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Saturday, October 29, 2005
The kids are getting really excited about Halloween. We went to a little carnival last night at the school behind us. Spook alley, games and lots of treats!!
Kara, Sam, Devin & Harrison
Today we are hoping to go to another Halloween party with some of our Candlelighters friends AND make a trip up to PCMC to get flu shots.
Thanks for stopping by. Please sign the guestbook and let Hippieboy know you were here!!!
Wednesday, October 26, 2005
Devin is back in school today. His cough has settled down a bit and he was past ready to get back to 'normal'. The kids were out last Thursday and Friday for teacher's meetings so he's had a long break.
Casey is about the same. He takes his medicine and shots with no problem at all. He smiles all of the time and just looks so darn cute. The doctor/vet seems to think that one day in the future the tumor on his spleen may just decide to burst. That is a scary thought. It seems everytime I see him lying so still I wonder if its over. What a horrible feeling.
Devin is still undecided about what he will be for Halloween. He's running out of time to make up his mind. Hopefully he will go with his original idea to be a hippie. I think he would be a great hippie. He's such a cutie.
Kara is still sold on the pink flamingo costume. Her dancing tights match the costume perfectly, so she is good to go. Of course she will want to put on make up...and in her opinion the more the better. Every flamingo needs make up and body glitter!! She's excited because dancing for next Monday night is cancelled so all of the kids can go trick or treating!!
Our friend Tuli is home recuperating from surgery!! Our cute little buddy Collin is feeling awful and in need of extra prayers. Kariis having surgery tomorrow. Princess Kaylais FINISHING CHEMO tomorrow!!!! Also, I just found out that the cutest kid in Kentucky's mom, Andrea, is celebrating a birthday today!!! Angel Ryan's site
Thanks for stopping by. Please drop Dev a message and let him know you were here.
Tuesday, October 25, 2005
We had a pretty good long weekend. Casey acts like he is feeling just as good if not better than he has in awhile. He sleeps alot and has trouble getting around, but honestly he has been that way for awhile.
Devin started getting sick on Sunday afternoon. I thought it was just a cold, but now I'm beginning to wonder if it might just be the flu. ??? He woke up feeling a little better this morning and anxious to get to school, but threw up before we could get out of here. He's just being lazy today. Me too. I've got at least a million things to do, but I guess they will just have to wait.
Our friend, Tuli had surgery yesterday. We had planned on visiting him in the hospital, but I think we'll just have to drop his surprise by the hospital....don't want to give him any Devin germs!!
Don't forget to stop by and wish Caitlin a Happy 7th Birthday !!!!
Thanks for stopping by. Please sign the guestbook.
Saturday, October 22, 2005
We brought Casey home from the dog hospital last night. He is so glad to be home. He is on pain killers/anti-inflammatories twice a day, as well as an antibiotic and insulin shots twice a day. Good thing Randy and I have plenty of nursing experience!!!!
Casey is glad to be home. The vet's office gave him a bath before they discharged him and he was feeling really good about himself. He has trouble getting around, but is just glad to be home with his family. He is full of smiles.
We bought Casey and Willie new beds yesterday before picking up Casey. Sam's Club has some new pet beds that are made out of that memory foam. They both LOVE the new cozy beds. Everyone slept a little easier last night.
We got the rest of Devin's labs yesterday afternoon and everything looks good. We can see improvements in his endurance every day. Its so good to see him looking and feeling so good.
I got a call last night from the Education Specialist up at PCMC. I had been trying to make contact with her for the past three weeks. She is just a wealth of information. She gave me the names of the people 'in the know' at our school district. (Its funny when I called the district office no one there seemed to know the names of these people) That will surely be helpful on Monday morning when I can start making some calls. She feels right now the 504 might be the best option for Devin. We'll see. I need to get some meetings set up and get this school problem straightened out...and SOON.
Thanks for stopping by. Today is a beautiful day out in Salt Lake. 60 degrees and just a beautiful fall day.
Friday, October 21, 2005
Yesterday was busy. Randy had been out of town in Kentucky and flew home early morning to see his Casey. We talked to the vet and Casey's bloodwork was not good at all. His WBC was 33,000...way too high. Turns out a dog's CBC normals are about the same as Devin's....sure made it easier to understand. His hematocrit was a little low, but all other red blood counts were within normal range. His main problem that we just found out about is serious diabetes. When I took Casey in his glucose level was 600, yesterday and today its around 400. It should be between 70-120. He's currently on insulin trying to get it under control.
He is able to get up and around with the help of two new prescription pain killers. We are hoping to bring him home this evening after he gets a second xray of his upper body. An xray of his lower body shows a possible cancerous tumor on his spleen. The dr. says that in dogs this usually means another tumor is present.....that is the reason for the other xray. Anyway, looks like his primary diagnosis will be cancer, with diabetes as his secondary. Anyway, we just want him home where we can give him lots of TLC.
We moved Devin's appointment up to early afternoon and got him seen for his first 'off treatment' appointment. We saw a new fellow who of course had never seen Devin before and was totally unfamiliar with any goings on in the hospital. Interesting. Devin's CBC was all pretty good...a little low on platelets. We're still waiting to get a faxed report on his liver function tests. Evidently his bilirubin was too high last visit. Anyway, the exam amounted to nothing.........a little, no alot disappointing.
Anyway, I'm feeling a little better about Casey's situation. He is certainly on a downhill slide. Poor guy.
In happier news, today is my friend, Mary's birthday. This is fl/caitlin's mom!! Happy Birthday Mary!!!!!
Thanks for coming by. Please leave Dev a message.
Wednesday, October 19, 2005
My gosh this has been a long week already. Luckily the kids get out of school today for an extra long weekend. I am past ready! This year's school situation is exhausting to say the least. Devin has spent the past two nights re-doing work that I know darn well had already been completed and turned in.....I don't know what is happening to his work, but doing every little piece of busy work not once, but twice is driving me crazy!!! Kara's situation is not much better and honestly I don't see any relief in sight. Thank God for UEA weekend!!!
In other news our oldest dog, Casey, is not doing well at all. It all began Monday night when he went to sleep in the garage and hasn't moved since. He is eating and drinking fine, but it is obvious he is in pain. This morning I verified that he is not able to get up at all. Poor baby. The entire time Devin was sick I prayed that Casey would stay with us. He is a big old dog who has been a member of our family for 11 1/2 years. It is hard to see him go downhill so fast.
I've got Casey an appointment at 4:00 today. I was hoping to take him to the vet while the kids were busy with school, but that was the first opening I could get. The kids don't realize how bad he is. Poor baby. Hopefully my neighbor can come over and help me lift him into the truck. Casey is over 100 pounds and just not able to help right now. Poor thing. I just feel awful about him. Hopefully the vet can fix him up to his normal cheerful self.
I'm working in Kara's class in a bit giving spelling tests. This is my third time this week to work at the school. I work Monday mornings in Devin's class and yesterday went with his class on a field trip to the Bingham Copper Mine. It was a lot of fun spending most of the day with the fourth graders. What a great group of kids!!
Thanks for stopping by to check on Devin. He has his first 'off treatment' appointment tomorrow afternoon. No scans or anything, just bloodwork. Hopefully everything looks as good as it should. I have a feeling he will be getting a GREAT report.
***UPDATE*** I was able to get Casey into the vet a little earlier this afternoon. Casey was unable to stand on his own so my neighbor was kind enough to come over and help me get him in the truck. Once at the vet, Casey was given a pain killer shot (he is already on pills for arthritis....he is 11 1/2 years old) The vet said as much pain as Casey was in it would be best to make him comfortable there; rather than lifting him up and down in the truck. Keeping Casey comfortable and pain free is forefront in my mind. Casey was admitted to the doggy hospital this afternoon with tests to be run. The first official report shows he is an extreme diabetic and this has come on all of a sudden. This was diagnosed with a urinalysis. We are still waiting for the blood work to come back. The doctor assured me that Casey was resting and comfortable. Thank goodness for that.
The kids are not taking news of Casey's hospitalization well at all. We've been staying away from the house most of the evening just because. It seems so wierd without Casey here. This will be the first night I have lived in this house without Casey here. Willie (black lab) is certainly puzzled. He just keeps looking for his Casey. It is just horrible. I'm hoping we will get some good news tomorrow and be able to bring Casey home where he belongs soon.
Thanks for checking in.
Saturday, October 15, 2005
Thanks for stopping by to check on Devin. He is looking and feeling better each and every day. Its hard to believe he has only been off of chemo for a little less than a month. He just acts like he feels so much better and more energetic. He goes to the doctor later this week for his first 'off treatment' clinic visit. I'm just a little nervous, but I'm sure everything will be just fine.
We had a good day today. It was a beautiful day here in SLC, so we headed up in the mountains to picnic and check out the fall leaves. The colors were just great. We went to one of our favorite spots up by Timpanogas Cave. Lots of beautiful leaves and a perfect picnic spot. Great for taking pictures!!!
Heres some from today:
Dad and the kids enjoying their picnic
Dev & Kara
Dev
Thanks for stopping...............PLEASE sign the guestbook.
Wednesday, October 12, 2005
I don't want to brag, but it seems as though school is going a bit better for Devin. Randy and I made up some check lists for him to use and so far they are working. He is so much happier and is starting to feel a lot more confident at school. I am so glad.
Yesterday he came home from school with a stuffed dog named "Rufus". He was supposed to take care of Rufus for the night and write about his adventures. Needless to say sitting around the house wasn't going to sound too interesting, so after dinner we headed to our favorite pumpkin patch!!
Devin and Rufus
Some pictures from Saturday's Lemonade stand...
Thanks for stopping. Click here for more info on the Volvo fundraiser. Hopefully your local dealership is participating. For EVERY person who test drives Volvo is donating $20 to pediatric cancer research!!!
Official Volvo site
Tuesday, October 11, 2005
Today is school picture day. I've got my fingers crossed that both kids remember to take off their jackets BEFORE remembering to smile!!
The weekend went well. Devin and Kara manned the "Alex's Lemonade stand" for several hours on Saturday. I'm thinking they probably took in $40 or so. Not big money, but every little bit helps!! The BIG money comes when people visit their local Volvo dealership and take a few minutes to TEST DRIVE a Volvo. Participating dealerships are donating $20 for EACH person who test drives this week!! That could add up to some serious money for pediatric cancer research!!
The kids will be out again on Saturday selling lemonade for this very important cause. If you've got some time this week PLEASE check out the volvo website and see if a dealership near you is participating. Its easy and it will make you feel good. Official Volvo website
School seems to be going better for Devin. Last week was hell. Not so much for him because he doesn't know the fight we've put up to get him a chance, but for us as his parents. I felt like Lance Armstrong hit the nail on the head when he said he thought the battle was over when he beat cancer and was off treatment. Sometimes the biggest battle is just being taken seriously as a human being and being given an opportunity to prove one is not 'damaged goods'. Thanks Lance for continuing to give so many of us HOPE.
Thanks for stopping by. Please sign the guestbook.
I love this picture!!!!!!
Saturday, October 8, 2005
"My legs feel stronger mom!"
That's how I felt too, after listening to Lance Armstrong speak last night. Stronger and energized!! I couldn't help but appreciate the hope and encouragement he gave our Co-pilot Hippie girl Chris in her final months of life. Thank you Lance Armstrong for all of the work you do. Thank you for keeping this horrible cancer fight right out there in the open where it needs to be!!
Kara waiting patiently to hear Lance....
Devin and Dad waiting to hear Lance....
Nearly 4 hours later we get our wish!!
Lance arriving to fireworks and a standing ovation!!!
Inspiring and definetly worth the wait!!! Listening to Lance tell his story sounded like I was telling the struggles we've had this past week with getting Devin an education....... I HOPE we have things squared away and are on track for a great year. Devin's got the confidence and skills we just need to keep reminding those around him that he does.....
TODAY...
The kids will be 'working' one of Alex's Lemonade stands at our local Volvo dealership. This is a big fundraiser Volvo has teamed up with to help support the fight against pediatric cancer. Hopefully there is a Volvo dealership near you where you can get involved. Check out the Volvo site The kids are really looking forward to it!!
Thanks for stopping by. We're glad its the weekend. We're all ready for a break...............off to sell lemonade!!
Wednesday, October 5, 2005
The talk on Friday with Devin's teacher went OK. We basically left with not much hope that she would do anything 'extra' to help. We figured we were on our own with trying to figure out solutions to Devin's "problems".
Devin's problems consist of:
1) Forgetting to put his name of his paper (this is almost as serious as getting your methotrexate levels down)
2) Forgetting to turn in his assignments after he finished them (almost as serious as forgetting to hep lock his line after flushing it)
3) General disinterest in school (I still can't figure out why he finds circling nouns and underlining verbs in sentences mundane)
Anyway, Randy and I came up with some little check lists that Devin can keep in his planner to help him stay on task. As of Monday morning his teacher reports he is ALREADY doing better!! Great!! She also took time to tell me that she re-thought Devin's needs and is now willing to help him. Ok, even better. Thirdly she makes sure and shows me that Devin is in the 2nd highest reading group....there are actually 3 groups of kids below him in reading. Good for Devin!!
OK....so that all turns to sh** today. I got a call from the school counselor who I had talked to Monday morning. I had gone to him to see if he could expedite the testing process that we feel Devin needs to address any 'missing information' that may be causing him difficulty. He was absolutely no help. I mentioned a little of the difficulty with the teacher and he specifically asked me if I wanted him to talk to her. I emphatically told him NO...that my husband and I had talked to her and come to an agreement.......
sooooooooooooooooooooo Early this morning the counselor, lets just call him Mr. Badattitude calls. He proceeds to tell me he has gone BEHIND my back and spoken with the teacher. He lists off any negative thing you could think of about any child and says that is what the teacher said and that she is NO LONGER GOING TO HELP??? What?? She just agreed to help. NEedless to say he had me beyond mad. Why, where did this come from?????? I don't know. I finally was able to get off the phone to answer the door....
Onto what I thought was problem #1,
We had horrible rains here all day and night yesterday. I kept checking our basement entrance to make sure the drain was clear, but evidently the rains while I was gone were too much and we came home to an inch of water in the office and family room area of our basement. Randy and I spent last night mopping up what we could, but the carpet guy was out early this morning to pull up the carpet and begin clean up. Like I said, I thought this was my number one problem until Mr. Badattitude called.
Anyway, just need to vent this before my head explodes. We are trying our best to keep ALL OF THIS NEGATIVE BS from Devin, so please if you want to comment about this, don't use the guestbook!!! Only happy, positive thoughts there....Thanks.
Thanks for listening...I'm off to make a surprise visit to the school.
Friday, September 30, 2005
Finally Friday. This has been a LONG, exhausting week. Apparently Devin is not doing well at school. This has been an ongoing battle since school started the end of July. I have continually met with the teacher and evidently things are not improving. Today we will be having another 'talk'. I'm certainly not looking forward to it, but I've certainly fought for more serious things in the past 2 years.
On to better topics.
Devin is doing well. He looks good. He feels good. He just looks like a picture of health. He'll be on septra two days a week for the next 6 months. He'll get a complete physical and blood work every month for at least the next 6 months; scans are every 3 months. Our cancer 'experience' is not over, but I think we may have finally got to the 'picnic phase' the doctors were always talking about......that is how they classified LTM, although Devin NEVER felt that way about it!!
Monday night was a fun night around here. It was GG's final full day with us and we had a good time. After Kara's dancing we headed over to Chili's restaurant to support their CHILDHOOD CANCER FUNDRAISER!! They kids thought that was very cool. We colored our own chili peppers to be hung up, ate lots of good food and saw some of our friends from PCMC. Our waitress was sooooo nice and even gave us dessert! A special piece of cheesecake for Devin; his favorite!!! She said our table had raised the most that night for childhood cancer.........we tried!!!! She even sent over the bartender to talk to Devin after hearing he had just finished treatment. The bartender was in his early 20's and had fought rhabdo and won TWICE!!!! I love to hear stories like that!!
Here's some pictures from Monday!!
GG and Devin showing off their artwork
Closeup of Mr. Devin's pepper
Closeup of GG's pepper
Hippie dad with his hippie bus pepper
Hippie mom is last on the creativity...
Kara's masterpiece!!
Some pictures from after our huge dinner:
Kara, GG and Dev
Thanks for stopping by...please sign the guestbook.
Thursday, September 29, 2005
Finally an update!!
Things are going ok here. Physically Devin is doing very well; mentally I am not so sure. He seems happy enough, but something still isn't quite right. I think the adjustment of 'being done with chemo' is harder than it sounds. It is great being done with all the pills and injections, but I think that Devin realizes that until that 5 year countdown is up anything could happen. He's just too smart for his own good sometimes.
We are exhausted around here. We all went to bed early last night hoping to catch up on rest. It seems like we've been going continuously for over a month now. I guess its time to settle down and get back to 'normal'.
Our new normal means full time school for both kids, dance twice a week for Kara, guitar lessons once a week for Devin, gymnastics and scouts one night a week. Glad we've slowed down. I'll be ready for the weekend when it arrives!!
Just a quick update. I need to get kids moving for school. I'll try and post some more pictures later. I was unable to get into ANY caringbridge sites yesterday so I'm very behind in checking on all our friends.
Sunday, September 25, 2005
Devin continues to feel better each day. He woke up this morning itching. After soaking for over an hour in the tub he said he felt much better!! We were able to take the main bandage off of his site and it looks soooo good!!! The surgeon was able to remove the keloid (excess scar tissue) that had formed on Devin's chest while Devin was sedated for the port removal.
He looks like a different kid. He said its much easier to move his arm now....he'd never complained, but this morning told me it had hurt to move his right arm every since he had the port put in (6-23-04...over a year ago!)
Not much news here. The kids go back to school tomorrow and aren't too excited. We've had a relaxing break and they don't want it to end...me either!! Its been an exciting month to say the least!!
Here's some more pictures from our Hawaii trip. One day we went for a helicopter ride over Kauai. It was beautiful!
Our family after the helicopter ride.
Here we are in front of the 'Fantasy Island' waterfalls....can't remember the real name.
A better view of the waterfalls
Thanks for stopping by.
Friday, September 23, 2005
Today has been a slow day. Devin is still not at 100%, so we've been taking it pretty easy. He's taking pain pills around the clock, but not sleeping as much today. He's been in a great mood. I can only imagine he'll feel better from here on out!!
Here's some pictures from Monday's LAST CHEMO!!
Some of the nurses signing "Happy End of Chemo to YOU!!"
Our family with the sign "Yahoo Devin" and quilt made by nurses at PCMC Oncology clinic
The special cake we picked up after Monday's appointment
Devin & Kara with the cake
Group shot with the cake...
Devin & GG after Saturday nights LTN walk
Devin holding his port after surgery yesterday. He was really out of it here and didn't even remember that he was able to take it home. I don't know what he plans to do with it......maybe hang it on his wall with his central line??
Thanks for stopping by to check on Devin. Please sign and let him know you stopped.
Thursday, September 22, 2005
It's official......Devin is de-ported!! We brought the port home to add to his 'collections'. The surgery went well. He is sore, but doing pretty good. We had some trouble getting him to wake up AFTER he was already in recovery, but finally got all of that worked out. We're glad to have all of this behind us!!
Grandma stayed home with Kara while Randy and I took Devin up for surgery. I felt like today had to be one of the happiest days of our lives. NO MORE CHEMO!!! We were all excited as we waited in the waiting room and watch Devin casually drink down some verced. Our excitement was short lived as we noticed some people we knew come into the surgery waiting area with a small baby.
To make a long story short we met a four month old baby girl, Gabriela, whose parents were teachers at a school where Devin and Kara attended 2 years of summer programs. This cute, innocent little smiley baby was diagnosed just yesterday with retinolblastoma.
This morning the parents brought her to PCMC for further testing and possible removal of her right eye. The last word I heard was the eye was removed. We are all just sick over this. Please keep this little one and her family in your prayers. They were to meet with oncology after the surgery this afternoon.
It just seems like cancer is way too prevalent. We have got to find a cure and the sooner the better.
Thanks for stopping by to check on Devin. We appreciate your prayers and well wishes. Please keep all of our CB friends in your prayers.
Also...many of you have asked about the official Light the Night total. I called yesterday and was unable to get any answers. My phone calls today to LLS have gone unanswered. My closest estimate is the $7200 that was turned in on walk night. Thanks again to all of you that supported Devin this year!!
Wednesday, September 21, 2005
Things are moving fast around here. Devin seems to have more energy than he's had in the past 2 years. He's looking and feeling good!!! Things couldn't get any better!!
We had a great time with Mrs. Pam here. Grandma is still here with us for a few more days. The days are going by quick!!
Tomorrow Devin is due at the hospital at 6am. He will get 'de-ported'...meaning he's getting that port taken out of his chest. He seems a little nervous, but the rest of us are really excited to put this final step behind us!!!!
Hopefully the surgery will go well and he will be home by early afternoon. He's the first surgery of the day so he's got that in his favor!!!
Here's some more pictures from our Hawaii trip and LTN:
Devin and Kara ready to snorkel
The kids in front of one of many banana trees in Hawaii.
Kara modeling her new Hula outfit complete with coconut bra
Devin, my hero!!
A group picture of about 1/3 of the walkers. We had 87!!!
Thanks for stopping by. I'll update again tomorrow after the surgery.
Tuesday, September 20, 2005
Devin's scans were perfect and clean!!!! He got his vincristine and is DONE with ALL chemo!!! Tomorrow officially starts his 5 year count down to a cancer-free life. He'll be scanned every 3 months for the first year; as well as blood tests every 4 weeks...NO MORE CHEMO!!!
We've been celebrating all day...well since around 5pm when we got the official news!! Devin is on cloud 9!! We picked him up a "NO MORE CHEMO" cake and had a little informal party tonight....lots of fireworks (enough to get someone to call the police), yummy cake, friends and an official 'pill flushing' of the remainder of his drugs.....
Quite a day!!
Thanks for checking on Mr. Devin. Thanks for your support!!!!!!!
some pictures from Saturday's Light the Night....
Devin & Kara with Clayton Brough from Channel 4 news...
Jimmy, Mrs. Pam, Grandma Gwen, Mom, Devin & Kara. The first three all flew in for the walk from out of state!!!
Jimmy and Mrs. Pam holding the sign..
Devin talking before the walk with the Channel 4 news people
Monday, September 19, 2005
Whew!!!
Busy, busy, busy here.
The Light the Night walk was a HUGE success!!
Devin personally raised over $6000 and his great team brought in over $1000 more!!!! (I'll put up the final totals when I hear from LLS) He was well represented with about 75 walkers....it was hard to keep track of all of our supporters!!! We appreciate all of you!!!
He was interviewed for the local Channel 4 news and was broadcast on Saturday nights 10pm newscast. He looked great!!!!
He was an 'honored survivor' for the walk and received lots of attention and applause!!! He LOVED it!!! We all had a great time. I told Devin he was probably the only team there that had international donations, donations from almost every state; as well as walkers from 4 different states!!!
GG from Oklahoma, Mrs. Pam from Missouri, Jimmy from Tennessee and of course all of his local Utah friends!! Thanks guys for all of your help. It was a big night and we appreciate you all!!
~~Devin has his FINAL CHEMO today after his gallium scan. If everything is clear and we are hoping and praying it still is....we will schedule his de-portation for sometime this week!!! Exciting!!!! WE WILL be getting scan results today, so I'll update when we get through up at PCMC.
Thanks to you all for your tremendous support. Its been a tough 2 year journey, but we are so grateful that Devin is doing so well and back on the road to being a normal, healthy 9 year old boy!!!!
Please sign in and let Devin know you were here!!!!!!!
Saturday, September 17, 2005
Devin chasing waves on Oahu!!
Devin, Dad and Kara hanging loose in the hammock.
Kara burying Devin in the sand.
One of many beautiful sunsets on Kauai.....
Just a small sampling of the pictures we took on our great trip to sunny, warm, beautiful Hawaii!!
Grandma and Mrs. Pam made it in safely yesterday. GG, the kids and I spent MOST of the day up at PCMC getting CTs and bone scans done for Devin. He was injected for gallium and will get his final chemo on Monday. It was a busy, busy day!!!!
We will have the BIG Light the Night walk tonight and are getting soooooooooooo excited!!! GG and Mrs. Pam are fixing these cute badges that say "Walking for Devin Ross" right now.
Thanks for stopping by....check out Devin's latest LTN total.....it keeps going UP!!! Thanks everyone!!
Friday, September 16, 2005
We are home!!!
We had an unbelievably GREAT time!! The trip was just amazing and beautiful. We are way off schedule now and are trying to finalize things for tomorrow's Light the Night walk!! Devin DID surpass his goal of $5000 and is still opening mail/checks received while we were away!! Thanks for all of the unbelievable support!!!!
I'll update more later. We've got grandma due here in just a bit, a trip to the hospital for CTs and gallium injection, then back to the airport to pick up Mrs. Pam....a very exciting, busy day!!
Thanks for stopping by. Be on the lookout for HUNDREDS of pictures coming soon!!!!!
Friday September 3, 2005
ANOTHER GRANDMA UPDATE:
Thursday evening, September 8
Just talked to Alisa again---still no internet access. They have moved to the island of Kauai---they are doing lots of snorkling and chasing giant crabs and gekkos around the beach. Also enjoying watching the giant sea turtles.
Devin said to tell everyone "Aloha" and
"Mahalo" (which means thank you) for
checking up on him and helping him make
his LTN goal.
They all seem to all be having a great time. I asked if they were ready to come home yet and there was a definite "NO" from all of them.
Good night---and God Bless!!
Grandma Gwen
UPDATE: Monday September 5
This is Grandma updating---they were told they would have internet connection where they are staying, but that didn't turn out to be true. So, Alisa asked me to come online and let everyone know how things are going with the Ross family.
She just wanted me to let everyone know that they had a good flight, the accomodations are great, and they are having a lot of fun. Devin still is battling a horrible cough---and that is slowing him down a bit, but they are still getting to go and do some fun things. This morning they were just letting Devin sleep in as he seemed completely exhausted. The beach is just right out their front door---so they can have a good time right there.
Yesterday they went through the Pearl Harbor exhibits and enjoyed that. They have been playing on the beach a lot--and just enjoying being away and relaxing......
Alisa said to tell everyone aloha---and she will update and post some pictures as soon as she can.
Aloha---Grandma
Devin is not 100but we are headed out tomorrow for Hawaii!!! We are all soooo excited that this trip is really going to happen.
We're planning on taking LOTS of pictures while we're gone!!!! Kara has insisted on taking EVERY bathing suit she owns, so we should get a picture of her in a different suit every day while we're gone.
Devin's Light the Night team is really coming together. I signed up another 7 walkers today just through casual conversation. It seems everyone is wanting to get involved.
People are starting to see the commercials on tv and hear about LTN on the radio; so it has been easy to get people involved. Devin is soooo close to his total!! He got 4 more checks in the mail today! Thanks to all of you who have donated to his team and have agreed to walk with him.
Thanks for stopping by!!
Please sign in and let Devin know you were here.
Thursday, September 1, 2005
Devin got a good nights sleep and was back to school today. I know he was glad to be feeling good and doing 'normal' things. He got all of his homework finished up last night, so hopefully he'll have a good day at school. The kids have a short day tomorrow then are off track until the end of September!! Hawaii here we come!!!
The kids and I spent too much time watching hurricane news this morning. The devastation is just horrible. So many people in such dire situations. Its hard to imagine that something like this could happen; especially in America. Devin was just mesmerized by the news. He is wondering what we can do to help and that is a really good question. I told him giving money to the Red Cross is probably a step in the right direction. These people need everything: food, clothing and shelter.
Devin told me that he wants to stop soliciting funds for the walk. He is sooo close to his goal and I would imagine with the checks that he has been promised he will make his $5000 goal. Right now he said he would like to help victims of the hurricane and ask people to help them. Cancer research is VERY important, but these people are without anything!! If you can help, please do so. These people need us.
Thanks for stopping by. Thanks for the kind messages and prayers for Devin and our family. We appreciate your donations to the Light the Night fundraiser. Please sign the guestbook and let Devin know you stopped.
Wednesday, August 31, 2005
Thanks for your prayers and well wishes for Devin. He has been feeling quite a bit better today and best of all NO FEVERS! I think we got lucky this time!! I'm just keeping my fingers crossed that he is feeling even better tomorrow.
Yesterday a lady from the Salt Lake Tribune came out to do a little story about Devin and the walk. He wasn't much into being interviewed since he was feeling so lousy. It sounds like the story will be in the paper while we are in Hawaii. I'll keep an eye out and post a link for it. We are hoping to raise more awareness for cancer research.
Dev's still got a bad cough, but sounds soooo much better than he did! I'm hoping he is well enough to go to school tomorrow. He hasn't been able to go yet this week. Kara has been bringing his work home to him. He finally has felt good enough this afternoon to start working on it. There's quite a bit of math (pre-algebra) and a unit of Russia. He has enjoyed that part. He was looking up some stuff on the internet about Russia earlier today.
Thanks for stopping by to check on Devin. He is still collecting donations AND walkers for the upcoming Light the Night walk. If you'd like to donate you can click here:
Devin's Light the Night Site!!!
OR
You can send your check or money order to:
DEVIN
PMB #429
6914 S. Redwood Rd.
West Jordan, UT 84084
Thanks.........he's just short of his $5000 goal and sooo excited!!
Tuesday, August 30, 2005
Devin is officially sick. Fever and everything!!
We are in a bit of a dilemma. His fever doesn't rank 'high enough' for oncology and since he's still on chemo the regular pediatrician doesn't want to treat him. We are kindof in a watch and wait situation. What to do??
He was up all night again coughing last night. I've been giving him cough suppressant (RX), but its not doing much to knock the cough. Needless to say he won't be going to school again today. He just doesn't feel good enough to even care. The only thing he seems worried about right now is getting well for the trip AND getting to his LTN goal.
Thanks for stopping. Please sign the guestbok and let him know you were here.
****Still time to donate****
HELP DEVIN'S FUNDRAISING EFFORTS !
DONATE TODAY !
Sunday, August 28, 2005
Its been a busy day.
Devin got up a little earlier than we expected (he usually sleeps in late on Sunday mornings due to Saturday night methotrexate). We had a pretty uneventful morning, then about 2pm Dev started acting wierd. He said his throat was hurting and he started coughing. Randy and Kara went out to get him a subway BMT to 'cheer him up'....that sandwich usually does the trick!!
Before they could get home from Subway, Dev had laid down on his bed and was fast asleep. No fevers; just sleeping away. None of us dared to wake him. About 8pm he woke up and was still feeling awful. I don't know if its just a cold or what, but he's not himself. Hopefully with his counts being so good he'll be able to kick whatever it is quickly.
While he slept, Randy, Kara and I were major busy. We got the dogs washed and brushed and even got the pool almost all the way drained. Things we were wanting to get done BEFORE we leave on our big trip. I've even got a stack of things in the hall closet that are just for Hawaii. We are so looking forward to this trip!!
Devin missed a couple of good phone calls this afternoon. T-shirt (that's what they call my dad) called and is sending a nice check for LTN tomorrow. Aunt Anita also called excited about her fundraising for Devin's team...she's got several of her friends sending him checks. We're sure hoping he makes his goal of $5000. That would be sooooo cool!!!
There is still time to donate. Any and all donations are appreciated. Click here to donate to Devin's Light the Night team
Thanks!
Thanks for stopping by. We appreciate your support. Please pray for those in the path of Hurricane Katrina and all of our Caringbridge friends.
Saturday, August 27, 2005
Happy Saturday!!
Devin is sleeping in and Kara has gone with dad to work. I don't know how much work he gets in while she's there, but they both seem to enjoy it. The past couple of Saturdays Randy has taken Kara with him so Devin can get some rest.
Devin made it to school every day this week. He acts to me as though he likes going, but his teacher indicates he doesn't act too thrilled to be there. I guess he just has a lot on his mind. More than most 'normal' nine year olds anyway! I think he is getting a little nervous about going off of treatment. He hasn't said anything, but I'm thinking that is what it might be. He keeps telling me that Chris and so many of the other kids were on treatment when they died....this chemo has been kindof a safety net for all of us....and he's smart enough to realize that even that is no guarantee.
Devin worries me to death. He just looks like he has so much on his mind that its hard for him to relax. I know he needs back in counseling, but thanks to our lovely new insurance getting things set up is taking longer than it should. I guess our new insurance really sends off some bad vibes...no one wants to take it!!
I found out when I took Devin in this last time that our new insurance had DENIED everything due to 'pre-existing condition', although they knew full well that he was undergoing chemotherapy. I still haven't received any EOBs from them....I think I'll put off that horrid task until AFTER vacation!!
This time next week we will be on our way to Hawaii. The kids are really starting to get excited. Kara has picked out some sand crafts she wants to do. I'm sure it will be a great relaxing time. We are sooooooooooo past ready for this trip. Its hard to believe we are really going. This trip has been cancelled/postponed sooooo many times since Dev got diagnosed. I think it will be a fun way to end up the chemo rollercoaster. I just wish he was completely off of drugs, but heck he is so close!!
We recruited 3 more walkers last night. After dinner we went over to R.C. Willeys and signed up our favorite furniture salesman, Shane. He said his wife and mother-in-law want to walk too. It is so exciting to have SO many people wanting to help! We've even got walkers recruiting more walkers. Devin should have a great turn-out for TEAM DEVIN ROSS.
Thanks for stopping by to check on Mr. Devin. He loves your messages so please drop him a line. If you haven't donated yet to his Light the Night walk there is still time. He's so excited about it. We all are. Its going to be great!!
Click here to donate to Devin's team
Please help....every $1 counts!!!!
Have a great weekend!
Thursday, August 25, 2005
Things are ok here.
The kids have a little homework which they do each night with MANY complaints. Neither of them enjoy taking time out of their play time to study. As a mom who has seen their child too sick and weak to laugh; much less play, I am just not very strict. I'd much rather watch them just playing and having fun and live in this moment.
Devin seems to be doing better with school this week. The week Co-pilot Hippie girl Chris
died he did absolutely NOTHING...no work at school and certainly didn't bring anything home to do. As a result we spent way too much time last week playing 'catch up'...totally out of character for Devin. He has always been a very conscientious student. This year he just doesn't seem to care much about getting top grades. We knew that for certain when he brought home his progress report yesterday.
I had no idea he would be bringing one home so early in the school year, but there it was in black and white. I think he was surprised when I didn't play 20 questions with him. The truth is I'm just so damn happy that he's healthy that school isn't my top priority either. It just feels good to see him going to school and doing what kids are supposed to be doing. Cancer really puts a damper on your social life.....to say the least!!
We signed up 6 more walkers at the Mary Kay meeting the other night. He did really well getting up and speaking in front of them. He really feels strongly that cancer gets cured NOW. He doesn't want any more of his friends to have to die waiting!! Me either. That is the only bad thing about CB....sooooo many of our friends are gone. Its hard. It really makes you wonder.
Please help Devin out with his Light the Night walk. He's hoping to make his newest goal of $5000....every little bit helps!!! If you've already donated THANK YOU...if you're considering donating, go ahead....donating is ALOT easier than undergoing radiation and chemotherapy..I promise!!!
Thanks for stopping.
Tuesday, August 23, 2005
No real news here. We were all pretty wiped out from our trip to Lagoon so last night was pretty low key. The kids both went to bed early and were somewhat excited to get to school today. Devin really acts like he likes his teacher and his class this year. I think he is finally starting to feel like he's a part of things. He's been able to go to school every day and that helps alot!! Even at the end of the year last year he had only made it every day ONCE!!
Thankfully this year is much different.
The fundraising has slowed down just a bit. Devin really wants to get it up to $5000 before the walk. I'm hoping his little 'talk' tonight to a group of Mary Kay consultants will add more walkers and funds to his team. He still insists his team is just Team Devin Ross....fine. Randy has joked around that maybe he should call it TIRED OF CANCER since that is his email/IM name. I think that would probably be fitting for anyone's team!!
Thanks for stopping by to check on Mr. Devin. He appreciates your messages so please drop him a line.....Caringbridge split the guestbook again so it is loading really fast!!
Have a great week....
Monday, August 22, 2005
Finally an update.
We met up with J.T. and his family yesterday at Lagoon. The Candlelighters were having their summer party there so we were able to get in for a discounted price. Devin was thrilled to see Riley, J.T.'s big brother and one of his friends from camp.
The kids had a good time riding on the rides and running all over the park. About 5pm after watching J.T. most of the day just not acting right...too quiet and just not himself, he spiked a fever. I took J.T. and his mom up to the ER so the dads and kids could stay and play. Everything turned out ok.....hoping that fever stayed away so they didn't have to make another trip down to SLC.
Anyway, keeping Devin super-busy we've found is the best way to keep him from dwelling on Chris. Dev and I had a very good, long talk on Saturday about Chris. He is just heart-broken. He told me that he knows more dead cancer friends than alive. It seems that is about the truth. I told him his story WILL have a happy ending. He is going to be cancer free and drive that hippie bus!!! I don't know that he believed me, but I sure tried. I know its hard.
Cancer is sooooooooooooo unfair. I know that. He knows that. Anyone who has experienced it first hand knows that.......there's no rhyme or reason to it. Why does one person get it and another doesn't? Who knows? Why does one person have to fight harder than others, only to lose the fight?? I don't know. How do you explain something like that....there's NO explanation.
No one should have to go through cancer treatments. Chemo and radiation are horrible at best. Please help us work towards finding a cure. I know I sound like a broken record here, but we need your nickels, dimes...dollars..whatever you have for Devin's Light the Night team...every little bit helps and is greatly appreciated.
Click here to donate to Devin's team
Please help him find a cure.
Thanks for stopping by. Please sign in and let Devin know you were here.
Thursday, August 18, 2005
Take a look at Devin's Light the Night totals!! He's exceeded his goal of $3000. Devin doesn't know it yet, but I'm sure when he finds out he'll want to up his goals. Thats just the way he is.
**UPDATE** Devin has decided to UP his goal to $5000!!! Lets see what he can do!!!!!
Click here to see his progress and/or donate
Any and all donations are appreciated!!
On to 'real' news. Devin is still struggling with the loss of his Co-pilot Hippie girl Chris . He is having a hard time concentrating and getting much of anything done. I found out yesterday that he did not do much of anything at school last week. We've had a little 'talk' and hopefully we are back on track. I know its hard, but I told him Chris would surely want him to participate at school. How can he get his driver's license to drive that hippie bus in 7 years if he doesn't study........gotta put things in perspective.
Other than missing Chris he seems to be doing great. He's so excited that this is his last round of steroids..me too. Having a kid of steroids is a little stressful to say the least. Those of you have dealt with it know what I'm talking about; the mood swings, cravings and just general irritability!!! This too shall pass!!
Devin in his Scotland shirt and cap.
We are just so glad to be at the tail end of this chemo rollercoaster. We've got so many fun things coming up in the very near future: our Hawaii trip, a visit from GG, a possible visit from Mrs. Pam, the LTN walk and Devin's final chemo!!! Things are good.
Casey & Willie say Thanks for visiting!!! Don't forget to sign the guestbook!!!!
Thanks
Wednesday, August 17, 2005
Finally got a chance to download some of this last week's pictures.
Devin letting off some of his fireworks for Hippiegirl!!
Devin and a bus we spotted on our way to Snowbird on Saturday........notice the clownfish!!!
Our family up at Snowbird
Devin & Kara in front of the survivor flags at Snowbird
Devin in his cool new shirt and hat from Miffy...Thanks Miffster!!!
The back of Hippie boy's head........out of control curls!!
Kara with one of her soap creations. We've been having fun doing this over the last week.
Devin's at school today and seems ok. I can tell he's on steroids.....he called me from school to request I bring him a subway sandwich..............please....for lunch. Of course I did. How could I say no to a face like that??
Thanks for stopping by. Please leave Dev a message and let him know you were here. Only 27 days of chemo...25 days until the big LTN walk!!!
Wednesday, August 17, 2005
On my third call into the clinic I told the receptionist that I did NOT need to talk to the nurse (the one who was due for work at 8am and had never showed up), but that I was re-instating Devin's appointment for today and we would be there!!! He seemed a little shocked, but I was a little more than shocked to hear the appointment had been cancelled!
I picked Devin up from school early, emla-ed him up and fed him some lunch. I dropped a big blob of emla down on his stomach so he was numb everywhere!!!! He seemed excited to get up to the clinic at do some fundraising. He said he wanted to raise at least $100 while he was up there.
We arrived at the clinic on time and checked in. Pretty soon the receptionist comes from around the desk to say with such excitement in his voice, "Mrs. Ross, you were right Amy looked at Devin's chart and you were right after all....Devin doesn't need an LP this time." I told him that I knew this, this is what I tried to tell him on the phone....I had always understood what the protocol was........as well as the start date for chemo.
No wait in the clinic. Devin was actually one of two patients there. Clinic has a neat new rule: The LATEST appointment they schedule is 1pm now........???? Go figure. Devin was accessed quickly, labs drawn and seen within an hour and a half's time. Labs are good. Higher than necessary, but since we're running out of days to tweak the oral meds they were once again left at 100%.
It was funny we saw the same dr. today that we saw last time and he took the time to explain to me that there had been a problem withe Devin's chart. "Evidently Devin's start date was written up as September 10th, rather than the 19th. This is what created the problem." OK. Yes, I knew that. Actually I spent a half hour a few weeks ago trying to convince the call back nurse that I indeed knew when Devin was diagnosed........evidently she forgot to log that "new" information in Dev's chart.
The next thing he told me was even funnier. He told me that Devin would be 'due' an LP on his last visit since he was on the study. Again, I corrected him. Devin is not and has never been on this study.........not that we didn't want him to be, but he had been treated with steroids (for the inaccurately diagnosed asthma) prior to starting treatment. This disqualified Dev from the study. Also the fact that Devin had to be treated with radiation (to shrink the main tumor in his chest due to his right lung being collapsed) he was ineligible to be a study participant. Of course this was all 'news'.
Yes, I know Devin is not their only patient, but wouldn't it make sense that any doctor/caregiver at that hospital could look at a child's chart and know exactly what was going on at any given time??? You can bet as Devin's parents we can give you lab results and drugs taken for any day of treatment with a moment's notice. It is mind boggling how many possible errors could have been made if we weren't so on top of things with his care. I'm just so glad we are on the official countdown!!!!!!!
In 27 days my son will be done with all chemo!!! Its hard to believe what he has done over the past almost 2 years. We're talking about after getting positive scan results next month about getting rid of the port.....that will really mean he's done!!
I need to update his LTN fundraising page. He signed up some more walkers today and collected about $150 up there today with promises for more to come. He feels so good about what he is doing and we're proud of him for working so hard on it!! Thanks to everyone who has helped him out.
Please sign in and let him know you stopped by.
Tuesday, August 16, 2005
I don't know where to begin. I am so unbelievably frustrated that I am losing patience for anything and everything.
It all started with Co-pilot Hippie girl Chris's death and has just continued to escalate.
Devin & Chris...........thanks Brenda!!
Devin seems to be doing 'ok'??????????? This is such a loose term. Is talking to dead people 'ok'? Is having your son talk about things in heaven like they are here in the present 'ok'?? I don't know. It seems to make him happy and thats always good, but honestly its kindof creepy. Not creepy because I find it hard to believe.....I very much believe it.......creepy because he tells me that Chris has him a spot reserved on the bus. I don't know something just doesn't feel right about it. You watch your kid go through 2 years of hell and then think they're ready to give it all up in a heartbeat. Its scary. He certainly makes heaven sound like a great place and names off several of his CB friends that are already there enjoying the perks of a cancer free life, but still it gives me chills.
Can I tell you that CANCER SUCKS????????????????? I hate it, hate it, hate it. Devin has 2 more treatments to go...including one that is SUPPOSED to happen today.........and then we're on to the 5 year count down to a cancer free life. I don't know something about being off of all drugs scares the sh** out of me!!!!! I liken it to a person on life support.....to me its like we're going to pull the plug and see if he sinks or swims. Scary doesn't describe this. Mind boggling comes to mind.........aaaaaaaaaaaaaaaaaaghhhhhhhhhhhhhhhhh
Ok....so I'm a little stressed. We've been working extra hard on our fundraising this last week trying our damndest to not only raise alot of money for the Leukemia Lymphoma Society, but also raise alot of awareness about the horrible facts of cancer. We've actually been doing really well.......really well until we hit up 'family' for help.......
So, Sunday night we go over to the inlaws for a birthday party. I ask Randy's aunt (the one he has been taking off of work to help move) if she is interested in joining us for the walk and/or donating. I assumed she probably knew something about it and would be glad to help for the following reasons:
1) Its the MOST IMPORTANT thing going on in our lives right now!!! 2.) She's living with Randy's parents right now and while Randy's mom has no desire to participate, his dad has agreed to walk and solicit donations 3.) Her sister-in-law of 40 years just died an awful death from brain cancer 4.) She has watched from the sidelines for the past 2 years as Devin has struggled for his life!! 5.) She proclaims herself to be a righteous, good person
Anyway, cut to the chase: NO, she doesn't want to walk and NO she doesn't want to WASTE HER TIME asking people for money........she doesn't LIKE having to ask people for money...........................ok........I bit, bit, bit my tongue before I had the energy to leave that place....
WASTE HER TIME, WASTE HER TIME, WASTE HER TIME??????? What the hell???????
I'll tell you right now, I would rather crawl on my hands and knees soliciting donations to rid the world of the curse of cancer than LIVE THROUGH THE NIGHTMARE MY 7 YEAR OLD SON WENT THROUGH!!!!!!!!!!!!!!! I was and still am in utter disbelief that ANYONE could be sooooooooooo selfish and ignorant!!!!!!! She has no trouble asking my husband to take off of work so she doesn't have to hire a mover, yet she doesnt' have the common courtesy to help with such a worthy cause!!!!! Unbelievable....oh, and did I mention that Randy works on billable hours?????????????? This means when Randy isn't working, he IS NOT GETTING PAID. HELLO!!!!!!!!!!!!!! WE are a single income family with MOUNTAINS of medical bills..........cancer is expensive!!!!!!!
On to other 'issues'.....we got a call yesterday from the hospital that the meeting we were supposed to attend on Wednesday night had been cancelled because 'not enough people had RSVP'd'. This meeting was set up by the oncology department to talk with parents and their children who are being treated to see how things could improve?????? So I guess our opinions do not matter...it makes me sick....
OK...so the day gets better..........took the kids to the dental office where we not only signed up more walkers for the team, but also got a clean bill of dental health for Mr. Devin and just one teeny, tiny cavity for Princess Kara. She was a little disappointed, but hey...thats not bad for someone with such soft little teeth...
OK..so it gets worse again..........come home after 5pm to hear that Devin's chemo appointment for TODAY has been cancelled because some certain nurse was reviewing his chart and decided this month is his last one.....and he needs an LP to go with his vincristine!!!!!!!!!! WHAT?? I know his protocol calls for an LP on the LAST chemo IF AND ONLY IF the child is CNS POSITIVE..............
So here's the problem: DEVIN has NEVER been CNS positive and is exempt from the LP. ALSO....this is NOT his LAST chemo......According to the protocol his last treatment of vincristine takes place on or before his inception date which is 9-17-03, not 9-10-03 as they have in their chart!! Believe me, I damn sure know when my kid started chemo...........that horrible day will forever live in my mind as long as I live!!!!!! I had a discussion with another 'all-knowing' nurse just last month about Devin's start date and evidently NONE of the discussion has been put into his chart! Why the hell does this not surprise me??
So................I called the clinic at 8am to find our the nurse who took it upon herself to cancel today's appointment and set up appointments for Thursday (won't work on so many levels) hasn't made it in for the day yet, another call at 9am...still not there. I finally just told the receptionist to listen to me.......we WILL be there.....just plan on it for TODAY!!!!!
Needless to say I am just a little stressed. Please say an extra prayer or two that these people can get their acts together and get Devin the chemo he is due.......Also, that my new insurance doesn't screw us up in scheduling all of the scans that are due next month and the following months.
If you've read all of this give yourself a pat on the back and be glad you're not me today. Also, please sign the guestbook and visit Dev's friends.
Sunday, August 14, 2005
What can I say, its been one hell of a week. Between Co-pilot Hippie girl Chris's passing, Peter Jennings death, Christopher Reeve's widow's diagnosis, our neighbor's death to NHL (diagnosed AFTER Dev) and Randy being gone all week......................aaaghhhhhhh!!!!!
Devin seems to be doing better; I think. Its hard to tell and honestly I've been keeping soooo busy this week to keep him from breaking down that I feel like we're on some fast moving ride........not the cancer ride....a different ride........where you try to go really fast so maybe you'll miss any more negative cancer news in the media and on CB. I'm thinking I'll be a much happier person when I STOP reading the paper and learning of yet another cancer death!!!!
Sometimes I wonder if we CB people are the ONLY ones that really 'get it'!!!!!!! For God's sakes we NEED a CURE!!! NOW!!!!!!! How many innocent people have to suffer and die from this dreadful disease before we get busy????????? Medical science has created viagra, but kids are still dying left and right????? It makes absolutely, positively NO SENSE!!!
Help us, help Devin, help whoever you know you is soliciting donations to find a cure for cancer. Devin is still as dedicated as ever to raising a bundle of money for his upcoming Light the Night walk. Help him out....your nickels, dimes, credit cards, personal checks....he'll take anything he can get. PLEASE.
HELP DEVIN'S FUNDRAISING EFFORTS !
DONATE TODAY !
The fireworks for Hippie girl went well. Since Randy was out of town our neighbor, Kevin, came over and lit them off for Devin. Devin and Kara got dressed in their YELLOW outfits for the special occasion. It was funny, Devin made sure all of the kids knew EXACTLY why we were lighting off the fireworks..............and of course they did!!! Our friend Chris. A person they never got the chance to meet, yet feel so close to because of all of the kind things Devin told them about her. Devin was proud of the tribute.
After our neighbors left and the kids were getting ready for bed we heard more fireworks outside!! Immediately I thought someone else must be celebrating Chris's life....we ran outside to see the most spectacular YELLOW fireworks lighting up the sky. I don't know who was lighting them off, but surely it was no coincidence.
We're hoping to relax a bit more since dad is home, although we spent most of yesterday up at Snowbird for our local cancer wellness house's "Survivors at the Summit". We rode the tram, played around and had an ok time. It was nice to see so many yellow survivor flags, but honestly sad too. Too many people die of cancer...every day!!! They had no way to honor those that didn't make it....?? I guess that is why its the Survivors Summit...I don't know.
Anyway, I've got some new pictures I'll try and download later. Our fireworks pictures aren't that great, but we tried. I guess its one of those memories we'll just have to keep in our mind.
Thanks for stopping. We appreciate all of the support we get from the guestbook entries and emails........Devin is saying maybe we should move to Wisconsin since he's had sooooooooo many posts from all of Chris's friends. Thanks to everyone.
Thursday, August 11, 2005
Its Thursday already. This has just seemed like the longest week ever. I feel like I can't sit still and I know for sure that Devin can't get still or he'll start to cry for Co-pilot Hippie girl Chris Its been an exasperating week here. I don't think if Chris would have lived to be 100 she would have realized the impact she had on so many people. I can remember telling her that one time and she just said "no". I wonder if she really knew what she did for all of us?
Today is the day for her family and friends to celebrate her life. I've heard talks of what will be done and it sounds nothing short of spectacular.......as it should be. I wish we could be there. NO. I wish I could be there. I honestly don't think Devin could/should have to handle that. We'll have our own Chris send-off later this evening. We'll all be wearing our yellow as we light up the sky tonight.
Thanks to everyone that has gone the extra mile by signing Devin's guestbook and sending him the special emails. They all mean so much. He was especially excited to be named an "honorary Wisconsin kid" for the Wisconsin Angels...quite an honor.
Thanks for keeping Chris's family in your prayers as they begin this new chapter in their lives.
Devin and his Co-Pilot Chris.........7/03/05
Thanks for stopping.
Tuesday, August 9, 2005
A big thank you to everyone who has taken the time to leave a message of condolence for Devin about his special friend, co-pilot, fellow hippie and role modelChris. He is doing well for the most part as we are keeping him extremely busy. We made a special trip up to Wyoming on Sunday to get some 'special' fireworks to be sent up to Chris. I guess we will let them off on Thursday when we do our own little memorial service for her.
Chris and Devin; July 3, 2005
Thanks for stopping by. Please visit Chris's site and leave a message of support for the family. Chris was a very special person who will be greatly missed; especially here in the caringbridge community. She was such a source of great HOPE and inspiration to so many.
We miss you Chris!! You will not be forgotten.
Sunday, August 7, 2005
Last night Devin's co-pilot, hippie girl and special friend Chris became an angel. We are all heartbroken; Devin especially. I've never in my life seen him so upset. Chris was a very good friend to Devin and many others.
He is understandably very sad and confused. This is making him question his own mortality even more. He's so grown up one minute and completely in the dark the next. Its hard to believe he's seen so much in the past two years. Losing Chris is hell! (his words)
We know you are free of cancer and flying free now Chris!! You must be more beautiful in Heaven than you were on Earth. We will see you again. Thanks for all the great conversations and just being there. You are a special person!
Devin and Chris, 7-03-05
Please go and offer your condolences to this remarkable family.
Friday, August 5, 2005
Devin here.
School was ok.
My friend Co-pilot Hippie girl Chris's site needs to get better.
I don't know what else to say.
Friday, August 5, 2005
The kids made it through their first full day of school. Its kindof nice to have the weekend, although we're having to keep Devin super busy to keep him away from this computer. He is constantly checking on Co-pilot Hippie girl Chris and getting discouraged that there are no updates. This is hard; very hard.
Each and every time we have a friend in such bad shape its horrible. Somehow this one seems the worst. Devin and Chris just have this connection. Its hard to explain. She has just been sooooooooooooooo good for him. Boosting him up when he was down and just giving him things to dream about. I guess, sharing his dreams is what I am trying to say. Its so unfair.
Thanks for stopping.
Thursday, August 4, 2005
Ok loyal readers; we need a miracle!!! Devin's co-pilot, hippie friend, role model and fellow cancer sufferer Chris is in serious need of a miracle.
PLEASE, PLEASE, PLEASE remember her and her family in your prayers. If you've got an extra minute drop her a line. You'll feel better, maybe she'll feel better and I know we'll feel better around here.
Thanks.
Thursday, August 4, 2005
Its Thursday already!!
This week seems to be flying by. Kara had her first spelling test today and Devin has his first vocabulary test tomorrow....he thinks. He said he'd get that figured out today. He is funny. He knows the information so he doesn't really stress too much.
He gave us a scare Tuesday evening. We had a friend over playing after school Tuesday. About 6pm the friend got picked up and we decided to order some pizzas. Devin was very excited about picking out exactly what he wanted for dinner. To make a long story short within minutes of ordering the pizzas the kid is complaining he feels sick. He went to bed and went straight to sleep. A feeling of panic set in...........even Kara was worried. I just had about 50 different horrible scenarios rush through my head. I know Randy did too.
We ate our pizza in silence and took turns 'watching over' Devin. My gosh I don't know if the panic of cancer ever goes away. My mind wasn't rational at all. All of a sudden I had the urge to get things packed up and move back to the hospital for 50 more years of chemo. Of course I stopped myself, but the fear is there.
He slept throughout the night, tossing a little and breaking into a sweat. About 2am he woke up, looked around a bit and went back to sleep. He said he felt better, just neck and head were hurting. I didn't give him any meds, just figured the sleep would be best and he was able to go right back to sleep.
Wednesday morning he wakes up feeling great and full of energy. All of our worrying about things that never happened (no rush trips to the ER, no relapse, no bad blood).........it was such a HUGE RELIEF!!!
Both kids had great days at school yesterday and came home and swam for awhile. Kara is convinced it must be winter now since 'lots of kids are wearing jeans to school'......NOPE, still in the 90s, so still shorts weather for these 2 kids.
She looked sooooo adorable this morning. Dad talked her into wearing a dress and she looked marvelous!!!! She rarely wears dresses anymore and we all miss how cute she looks in them. Maybe enough people will tell her how cute she looks today and she'll start wearing them again.
Not much else to report here. Devin's still working hard on his fundraising and enjoying every minute of it!! If you'd like to donate online you can click here:
Donate to my Light the Night walk
Any and all donations are appreciated!
Don't forget to sign the guestbook and let Dev know you were here. Also, don't forget to check on some of Devin's friends.
Co-pilot Hippie girl Chris's site Please go check on Chris...she's in the hospital right now.
Tuesday, August 2, 2005
Well, yesterday seemed like a pretty productive day. I went up to Devin's class in the afternoon and did a little presentation about the Light the Night walk. Several of the kids seemed genuinely interested in walking and fundraising. The teacher was certainly great in helping promote the event. She is soooo nice. I'm so glad that Devin got her this year. She just seems full of energy and ideas.
Last night we went out and signed up more walkers here in the neighborhood. That went a little easier than last year. I don't know if we're just a little more relaxed or what, but we've now got most of the neighborhood broken into zones with different families soliciting for the walk. Its exciting to think of sooooo many people coming together for Devin's team. The more the merrier!!!
Thanks to those of you that have taken the time to donate. It means so much to Devin and our family. His current goal is $2000 and he said when he meets that he will raise the goal. He really feels strongly about this.
There is still plenty of time to donate....47 days to be exact! Click here if you'd like to help:
Donate today!
Any and all donations are appreciated!!!
Dev told me the other day that he is having a hard time focusing at school. I'm hoping today is a better day. He was thrilled to see a 'real' (as he calls it) update from his co-pilot Hippie girl Chris I'm noticing that his moods directly relate with how well Chris is doing. We need you to get better soon Chris!!!!!!!
Mr. Devin
I did find out yesterday that Devin is due 2 MORE doses of vincristine. We've got him set up for it on August 16th, then September 19th will be his FINAL CHEMO!!! How exciting is that. Its a wierd feeling, but a nice one. I can't wait to get rid of all the medical stuff that has been taking up our entire hall closet for the past 2 years. If anyone here in SLC area could use anything, please email me and its YOURS!!!!!!
Thanks for stopping by to check on Devin. He's looking good and besides his concern for Chris, he seems to be doing so well. Please drop him a line and let him know you were here.
****UPDATE***** Devin's LTN campaign got a generous donation late this afternoon. He's upped his goal from $2000 to $3000. He is so excited that he is just beaming!!! Thanks!!!
Sunday, July 31, 2005
Hi,
Devin here. I was wondering if any of you can find me fireworks?? I can't find a place that sells all sorts of Roman candles. I think I would like to make some of my own fireworks sometime. I found the right recipe for Roman candles. I might change it around some and make it so they shoot out about 160 fireballs. My mom says it is too dangerous. It sounds cool to me.
Today was a hot day. My friend Harrison came over and played at my house. We played out in the back yard, then we came inside and played gamecube. Harrison loves playing video games. He has over 4000 !!
Tomorrow I am going back to school. It will be fun. In the afternoon I get to talk to my class about the Light the Night walk. My mom got the information for me to give out to the class. My teacher, Mrs. Kilcrease, said that she will for sure help me raise money and walk. I think that is cool. I'm going to ask the principal and see if she'll walk too. She's really nice.
If any of you want to donate to my team please send a check or money order made out to:
Leukemia Lymphoma Society (LLS)
and mail to:
Devin Ross
PMB #429
6914 S. Redwood Rd.
West Jordan, UT 84084
OR you can click here:
Help me find a cure!
and donate with your credit card. ALL donations are tax deductible and get us one step closer to finding a cure for cancer. Help me out.....PLEASE.
If you can find the Roman candles possibly the old fashioned ones you can mail those to me too.
Don't forget to sign my guestbook. I don't know you were here if you don't let me know. Also, please go visit my friend Chris.
Your friend,
Devin
Sunday, July 31, 2005
We've had a relaxing weekend. Everyone just seems tired. The first week of school always tires everyone out...including me!!
Last night we went to the drive-in see Willie Wonka and The Chocolate Factory. We all really liked it. It was a little different, but good. Kara crashed on the way home, but luckily Devin stayed awake so we could poke his pills into him when we got home.
Today should be another easy day. Its not extremely hot so thats always a plus too.
Here's a picture of the kids on their first day of school. Devin insisted on wearing his "Powder Keg" t-shirt from Silver Dollar City for the first day.
Kara the 2nd grader and Devin the 4th grader!!!
Thanks for stopping by. Don't forget to sign the guestbook.
****Just found out our buddy, Parker is celebrating a birthday today!!! Happy Birthday Parker!!!!!!!! Its great to be eight!
Friday, July 29, 2005
Its finally Friday. The kids are excited today is a short day at school. They both still seem a little apprehensive about school; Kara more than Devin. Hopefully by next week they will get into more of a routine.
Back to school night went fine. Both kids have nice teachers who seem dedicated to their job. I'm hoping that this is a great school year for the kids. The last couple of years have been hard to say the least. Hopefully this year will be more 'normal'.
We are all pretty tired and moving slow around here. Devin doesn't say much about it, but I know he is worried alot about Chris She has not been doing very well....hell that is an understatement. I hate cancer.
Devin is working hard on his fundraising for the Light the Night walk. Thanks to those of you that have already helped him.
Please sign the guestbook.
Thursday, July 28, 2005
First off ~~ Both kids did make it to school today. He laid around most of the day, but by evening was feeling and looking quite a bit better. He looked good and ate a good breakfast (most importantly it stayed down) before heading off this morning. They are both excited that the school is having an 'ice cream social' tonight along with back to school night. Exciting.
Randy made it home about 4am this morning. He's been down in Miami this week. He said he enjoyed the trip, but was sure glad to be home!! The kids were thrilled he was home when they got up this morning. They were so glad he was home that unbelievably they DIDN'T ask if he brought them anything. They miss their dad when he's away.
Thanks for stopping by to check on Mr. Devin. If you'd like to donate to the Light the Night walk by credit card you can click here:
Click here to donate to Devin's team
Please help....every $1 counts!!!!
Checks or money orders should be made out to the LLS (Leukemia Lymphoma Society) The checks will not be cashed until they are turned in at the walk which is September 17th.
Devin R.
PMB #429
6914 S. Redwood Road
West Jordan, UT 84084
Please sign the guestbook and don't forget to check on Devin's friends:
Jaxon and Robin's site
Co-pilot Hippie girl Chris's site
Wee Kayla in Scotland
Caitlin & her sisters Today is her sister Stephanie's 9th birthday!!
Kari's page
Collin in California
David's site
Angel Melody's site
Angel Ryan's site
Angel Christopher's site
7-27-05 2pm
Well, Devin woke up, got dressed and threw up. He told me he was fine..it was probably 'just the chemo' and he went off to school. I came home to work and got a call from him around ten...throwing up again.
He seems fine now. He has just been resting on the couch and has kept his lunch down. He says he'll be fine and I know he will be, but its soooo frustrating to know why this is happening. He looks good...no temp, so hopefully the throwing up will be short-lived and he can get back to real life soon.
~~Wednesday 7-27-05~~
There were no complaints about the first day of school. Devin said his class was alot of the same people, while Kara complained that she only knew 3 of the girls in the class. I told her that I bet by the end of the week she would know them all!!
They each had a tiny bit of homework last night; mostly 'getting to know you' types of things. Nothing major. Good thing because they were both wiped out!!
Our big excitement around here is a young bird chirping away in one of our window wells. Kara tried to rescue him, but he kept pecking at her. We've got a couple of ramp-type things set up, but he isn't taking the hint. I think I'll try the butterfly net on him and get him out of there before he attracts a cat with his noise.
Thanks for stopping by to check on Devin. If you'd like to donate for the upcoming LTN walk there is a link above. Thanks.
Tuesday, July 26, 2005
The kids are off to school!!! I can't believe I have 4th and 2nd graders on my hands. They both acted excited to be going back; Kara more than Devin, buth that is pretty typical.
We had a good day yesterday. I couldn't get them out of bed in time for the beginning of the parade, but we did get downtown before it was all over. We saw a few floats...enough for them anyway. Devin was especially excited to see the cool float for Primary Children's Medical Center (his hospital).
We met up with some friends (Nick and his family) down at Gateway and let the kids play in the fountains. Its really neat down there. The fountains were done as part of the Olympic park for the 2002 Winter games. The kids LOVE going there. Afterwards we shopped around a bit until everyone was ready to leave.
I did land up buying Devin some of those Heelies shoes against my better judgement. He did NOT wear them to school today. He wore them around the kitchen and definetly needs more practice before venturing into the real world with them on!!!
Thanks for stopping by to check on Devin. As soon as GG sends me the cord for my camera (switched cameras in OK) I can download the newest pictures...........hopefully soon.
Please don't forget to sign the guestbook and take a minute and visit some of Devin's friends:
Jaxon and Robin's site
Co-pilot Hippie girl Chris's site ***UPDATE*** I JUST read Chris's update and it is not so good. Oh how I hate cancer. We need as many people as possible to spread the word to pray for our friend Chris. Thanks
Wee Kayla in Scotland
Caitlin & her sisters
Kari's page
Collin in California
David's site
Angel Melody's site
Angel Ryan's site
Angel Christopher's site
Monday, July 25, 2005
Good Morning!!!
Dev is feeling good, although I wish I hadn't bragged so soon. We were out and about yesterday after he finally got up doing a few last minute school things and he fell on me TWICE!! I am almost certain its the vincristine, but he hasn't done that in quite awhile.
The second time he fell he was walking in front of the car and just went straight down. He looked at me like I had pushed him. I guess he was just in shock because later he told me that he didn't feel it coming at all. I hope this new little added bonus goes away soon!!! Especially with him starting school tomorrow!!
We went to our neighbor's last night for a cook out. The kids had a great time playing with Harrison and Samantha. It kept sprinkling on them and had actually cooled down quite a bit, but they didn't seem to notice as they kept going in and out of the pool. Sam got a really cool bouncy house type pool for her birthday. Its got a couple of slides that you climb up to slide into a little pool of water. Its really cute and lots of fun.
Anyway, after a great dinner the fireworks 'show' started. I think the whole neighborhood was lit up from fireworks. By the time we finished the air was really smokey and smelled of gunpowder. I could still hear fireworks going off way after the kids were sound asleep.
Today if Devin feels up to it we are going downtown SLC for the BIG parade. This is for the big holiday here today; Pioneer Day. I'm going to try and wake him up in a sec and see how he feels. We'll see. I could go either way. Its highly televised so it will be on tv all morning into the afternoon.
Thanks for stopping by to check on Devin. He appreciates your messages, so do drop him a line.
Also, don't forget to check on his friends. Thanks
Saturday, July 23, 2005 9:30pm
Finally an update.
Devin has been feeling good. Chemo hasn't made him slow down one bit this time. I'm so glad. We're still not sure if he'll get one or two more treatments of the vincristine, but I'll get that figured out soon enough. For now we are focusing on getting as much fun as we can in these last few days before going back to school....the kids start on Tuesday (year-round school)
We've been to the movies, been swimming, been shopping for back to school clothes along with MORE swimming and letting off fireworks. We had company from Idaho last night and we really enjoyed that. They brought down Devin's FAVORITE Papa Tom's pizza from Idaho Falls. He was thrilled!!!! Thanks Kevin and Cammy!!!
Today we went to lunch at Gardner Village, fed the fish and did a little shopping. Later we went out to Dillards to see the Hawk skaters show off. There were LOTS of people there; including one of Devin's good friends from school; Nicholas. Dev and Nick hung out and watched the skateboarders and both landed up winning a red 'Hawk' shirts. Then they stood in line to get some posters autographed while the moms and sisters went shopping. They had fun.
After that we met up at Wingers for dinner, then off to the new West Jordan park to play until the kids were worn out. It was a fun day. The kids are worn out and ready for bed.
I did talk to the Executive Director of the Leukemia Lymphoma Society's Phoenix office yesterday. (that branch is currently over the SLC office) She was very nice and apologetic for what had happened. I should hear again from her next week about what type of action is being taken.
Thanks for stopping by to check on Mr. Devin. He appreciates your messages so please drop him a line.
Thursday, July 21, 2005
Things are better now. I have simmered down a bit....not completely, but better than yesterday. The things this 'lady' said to me were hurtful and mean. I don't understand why some people have to be that way, but maybe hurting other people is her way of making herself feel better.
Anyway, to make a long story short I called on Tuesday because when I arrived home from Oklahoma I had a number of email and phone messages asking where the Light the Night information I promised was. I had called Leukemia Lymphoma society here to talk to the guy who was in charge of the walk when I left..................evidently the office has had a major upheaval and the guy I had dealt with is no longer employed there. Ok...so this makes sense why the letters and info. weren't sent out. The ONLY reason I hadn't sent them was 1.) I didn't have enough walker packets and 2.) The guy in charge of the walk wanted to send out the packets in official LLS envelopes.
I made contact with the 'lady in charge' on Tuesday. She informed me that she had "100's of people just like me calling her with empty promises of how many walkers and how much money they would be raising". She also informed me that the poster that the society had suggested LAST year would not be made..................because......"I don't know who would want a poster with your son's picture on it" "If you want a picture of your son, why don't you take him and get his picture made."
Ok...that was hurtful enough. I tried to explain that if she didn't have the time to send out these letters that I could do it, but I had been in contact with LLS and the man who is no longer there had assured me that the letters and information packs WOULD be sent out. She then proceeded to tell me that she had taken a cut in pay and benefits to work for the LLS. I told her that was a generous thing to do, but the people I deal with....primarily my son were not doing this for a paycheck, but because it is their life...24/7.
She did NOT like that at all. She then proceeded to tell me that "my son was NOTHING SPECIAL" and he certainly "wouldn't be getting any special treatment". Ok, ok...he didn't intend on becoming a celebrity from this, but he had been asked to be the youth 'ambassador' for the LTN walk for the state of Utah. She assured me that he would NOT be getting to do that and any promises that had been made to Devin and our family were not going to be honored.
Ok, ok....again, Devin did NOT choose to do this walk to become a celebrity. He wants to do the walk because he truly does NOT want anyone else to have to go through the living hell of chemotherapy and radiation. He has seen more friends die in the past 2 years than most people see in a lifetime. Plain and simple; he has chosen this as 'his charity'.
The absolute worst part was when she told me again that "Devin was nothing special" and "ONE PERSON CANNOT MAKE A DIFFERENCE".......this was in reference to the fact that the survivors who walk the walk could NEVER collect as many donations as a 'business woman' such as herself from major corporations.
Anyway, I feel this 'lady' is a HORRIBLE representative for our state's chapter. I could duck my tail between my legs and call it quits, but that is NOT the way we do things around here. The things she said were totally uncalled for, but the important person here is NOT her, but all of the people waiting for a cure....including my son!!!!!!
I've got a phone call into the Regional Director at the New York office. I want to remind her that 'under-paid, hateful people' do not deserve to work with people such as my son. Cancer is tough enough without the added bull-sh**.
Please do NOT say anything in the guestbook regarding the hateful comments that were made. Devin rarely if EVER reads my journals and for obvious reasons has not been told of the horrible things that were said.
Thanks for stopping by. Please leave Dev a message and let him know you were here.
If you're in the mood to donate the link is above.
Tuesday, July 19, 2005
Today started off good. I got to talk to Angel Chris's mom...Leslie.
The day quickly turned to sh** when I FINALLY got ahold of our local Leukemia Lympohlma office. The new 'lady' in charge was nothing short of mean on the phone. I don't know what to think or do. After listening to her scream for awhile I finally just got off of the phone so I could take Devin to chemo...............
Luckily chemo went well. My spirits are low....Devin's are low.....and this lady doesn't even have the decency to apologize for the cruel things she said to me. Unbelievable.
I guess it takes all kinds to make up the world. I 'll elaborate more later. I'm trying to keep my mind off of this crap for awhile.
Thanks for stopping by.
Tuesday, July 19, 2005
Chemo is done for another 28 days. Its been a long day already.
Thanks for stopping by!!
Tuesday, July 19, 2005
Good Morning!!!
The kids are sleeping in this morning so I thought I would take a minute to update. Dev has chemo today and is NOT looking forward to it at all.............go figure!!! We will be sooooooooooooooo glad to put this all behind us. His FINAL treatment is scheduled for September 20ish.....we're a week off due to our vacation to OK/MO.
The fundraising for Light the Night is going well. Devin picked up some more money while in Oklahoma and Missouri and I answered back SEVERAL phone calls yesterday regarding the walk. It is exciting to see how BIG this year's team is going to be!!!!!!!!!!! Devin is just thrilled with how much money he's raised so far and he has only just begun!!
If you'd like to make a donation to Devin's team he will be taking donations up until September 17th.......the night of the walk. All donations are accepted.......we need your help to put an end to this ugly disease that has claimed the lives of sooooo many people we love.
You can click here to donate online with a credit cardHELP DEVIN'S FUNDRAISING EFFORTS !
DONATE TODAY !
or, you can send a check or money order to Devin direct:
Devin
PMB #629
6914 S. Redwood Road
West Jordan, UT 84084
If you're in the SLC area and would like to walk with his team or have items you'd like to offer for the door prize drawings please send him an email:
tiredofcancer@yahoo.com
We appreciate all of the support we have received to date. YOU can make a difference!!!
Please remember all of our friends in your prayers. I cannot get Angel Ryan's family out of my mind.
Also, Devin's co-pilot Chris
Thanks
Sunday, July 17, 2005
We're home!!!!
The kids were so glad to see daddy and the dogs. Both of them commented that Casey and Willie had 'grown' while we were away....I think they were comparing our 2 dogs to little Pookie, who only weighs 2 pounds soaking wet!!
We had a great time in Oklahoma and Missouri. We got in some good visits with Nanny and she was just thrilled to get to see the kids and see Devin looking so good!! He does look just great................tons of that dark curly hair make him really stand out in a crowd too!!
While we were on our way up to Missouri my dad got really sick; REALLY sick. The dr's said they thought he had a double stroke and put him on some new medicines. He was really feeling awful after we got back into town, but you could still tell he was glad to see the kids. He thinks they are the cutest, funniest, smartest kids around ~~~~ can you tell my mom and dad only have 2 grandkids??? 2 spoiled grandkids that is!!
Anyway, everyone has dr's appointments this week. Devin has a couple of days to recoup before going in for chemo on Tuesday (he was allowed a week's delay), my Nanny is going in for a colonoscopy/endoscopy, Uncle Jeff (my brother) has an appt. and of course my dad has an appointment too. A busy week ahead!!!
Dev is still sleeping in this morning....he is wiped out!!! I'll try and get some of our new pictures downloaded soon.
Devin & Kara in front of a hippie bus in Branson, MO
Kara and Grandma in SDC
Grandma, Devin, Kara, Mrs. Pam with "Catfish" the world's tallest hillbilly in SDC.
Mrs. Pam got her hair 'done' while we were there too............
Devin swimming after a long day at SDC...notice how LONG his hair looks when its not all curled up!!
Thanks for stopping by....please sign the guestbook and let Devin know you were here.
Thursday, July 14, 2005 10:40 AM CDT
Good Morning from Oklahoma---Grandma here--(Mom is getting everyone a bath and ready for another busy day). We got back from Missouri about 10:30 last night. Everyone was pretty well worn to a frazzle!!
We had a wonderful time though. It was SO SPECIAL meeting Mrs. Pam. She is a delight to be around. She has spread so much of her love through the whole CaringBridge community and it was so good to finally get to meet her-live, in person!! We all fell in love with her instantly!!
Thanks Mrs. Pam for making the trip to join us. I am sure we will all have lots of wonderful memories to savor for many years to come.
Let' see---what did we do first---We drove from Oklahoma on Sunday and stopped by the Precious Moments factory outside of Carthage, Missouri. It was so odd that Devin said as soon as we drove on the grounds that it felt like a sad place-and he had no idea what it was all about.
After we visited the chapel-dedicated to the son of the owner who had passed away-and saw all the angels that were in heaven--the little ones that went home to heaven-Devin understood why he felt sad.
The entire ceiling is painted with little precious moments angels going to be in heaven-no more pain-sick no more. A truly inspiring place.
Devin, Rickey 3, Aryn and Kara
Then, it was on to Alisa's friend for many, many years--Sheila's house. We received quite a warm welcome there. The kids were all so happy to see each other again. They instantly were playing and having a great time together.
Soon, Mrs. Pam arrived (she was Sheila's daughter Aryn's preschool teacher year before last) and everyone was so excited to see her. We all had a good visit and looked at lots of pictures and Sheila's sweet husband Rickey cooked hamburgers and hot dogs for everyone.
We had a great time with Sheila, Big Rickey, Little Rickey and Aryn. 
Sheila and Alisa at the cabin
Next, Mrs. Pam left with our group and headed for the Golden Arrow resort (just past Silver Dollar City) and got rested and ready for our big trip to SDC the next day.
We spent two wonderful days going back in time with all the folks and SDC. If you get the chance and love history--and lots of good rides thrown in too---it is a wonderful family park with lots to learn along the way. They are making candy, and throwing pots, blowing glass, making lye soap, candles and all the things people needed to survive in the late 1800's.
This place is really special to me---my grandparents grew up and were married and started their family in this area. I have gone to family reunions there since I was just a little one.
The first time I went to SDC it covered about a city block-now it covers acres and acres. A fun place. I think we all enjoyed it and learned a lot. We spent two whole days taking it the sights and sounds of the place. I think Devin rode the Wildfire (a really HIGH rollercoaster) about ten times-the thing goes upside down six times he says-not a Grandma type of ride at all.
He also endured the PowderKeg a couple of times-but he had to rest after that one!!! He said it was really scary...and for him to admit that..it must of been BADDDD!!
Group outside of Silver Dollar City
Kara making her rag doll inside of SDC
Devin on Wildfire
Grandma and Kara taking a break.
When we got back from SDC the second evening, Mrs. Pam had Devin and Kara paint their palms and put their handprints on the tire cover on her vehicle.
She had all the Caringbrige kids names around the tire-with Cure Childhood Cancer in BIG letters and Let Kids Be Kids and the Golden Childhood Cancer symbol. It was really neat that they got to be a part of that.
Getting ready to paint; Mrs. Pam and Dev
Devin painting
Kara and Mrs. Pam painting
The finished product!!!! Devin Kara and Mrs. Pam
On the evening of the second day, Sheila and the kids came out to the Golden Arrow and spent the night with us.
We had lots of fun----eating popcorn, making the bracelets that Chris taught Devin to make when he met her in Wisconsin, talking and laughing and just generally having a good time. The next morning we loaded up and went in to Branson to ride the Ducks.
The Ducks are a WWII vehicle that runs on both land and sea. The kids all loved that tour of Branson and then out to Tablerock Lake and right into it we went. All the kids got to help "drive" the boat. It was the hottest day of our trip---and it was good there was a nice breeze off of the lake.
Bracelet making party at the cabin
Girls in the hot tub
The Ducks!!!!
Then back to Rogersville for a Braums run---and with tummies full and everyone happy--we said our farewells to Mrs. Pam as she headed back to St. Louis.
We went back to Sheila and Rickey's house and visited and let the kids play again for a while---then headed back to Oklahoma....
I think it was a lovely trip---would do it again in a heartbeat. So good to see Sheila and the kids again---and meeting Mrs. Pam made everything extra special---I guess she was our "Bonus"!!
Thanks for stopping by. Please remember our friends in your prayers....especially Angel Ryan's family. Thanks
Thursday, July 14, 2005 10:40 AM CDT
Good Morning from Oklahoma---Grandma here--(Mom is getting everyone a bath and ready for another busy day). We got back from Missouri about 10:30 last night. Everyone was pretty well worn to a frazzle!! We had a wonderful time though. It was SO SPECIAL meeting Mrs. Pam. She is a delight to be around. She has spread so much of her love through the whole CaringBridge community and it was so good to finally get to meet her---live, in person!! We all fell in love with her instantly!! Thanks Mrs. Pam for making the trip to join us. I am sure we will all have lots of wonderful memories to savor for many years to come.
Let' see---what did we do first---We drove from Oklahoma on Sunday and stopped by the Precious Moments factory outside of Carthage, Missouri. It was so odd that Devin said as soon as we drove on the grounds that it felt like a sad place---and he had no idea what it was all about. After we visited the chapel---dedicated to the son of the owner who had passed away---and saw all the angels that were in heaven--the little ones that went home to heaven---Devin understood why he felt sad. The entire ceiling is painted with little precious moments angels going to be in heaven---no more pain---sick no more. A truly inspiring place.
Devin, Rickey 3, Aryn and Kara
Then, it was on to Alisa's friend for many, many years--Sheila's house. We received quite a warm welcome there. The kids were all so happy to see each other again. They instantly were playing and having a great time together. Soon, Mrs. Pam arrived (she was Sheila's daughter Aryn's preschool teacher year before last) and everyone was so excited to see her. We all had a good visit and looked at lots of pictures and Sheila's sweet husband Rickey cooked hamburgers and hot dogs for everyone. We had a great time with Sheila, Big Rickey, Little Rickey and Aryn.
Sheila and Alisa at the cabin
Next, Mrs. Pam left with our group and headed for the Golden Arrow resort (just past Silver Dollar City) and got rested and ready for our big trip to SDC the next day. We spent two wonderful days going back in time with all the folks and SDC. If you get the chance and love history--and lots of good rides thrown in too---it is a wonderful family park with lots to learn along the way. They are making candy, and throwing pots, blowing glass, making lye soap, candles and all the things people needed to survive in the late 1800's. This place is really special to me---my grandparents grew up and were married and started their family in this area. I have gone to family reunions there since I was just a little one. The first time I went to SDC it covered about a city block---now it covers acres and acres. A fun place. I think we all enjoyed it and learned a lot. We spent two whole days taking it the sights and sounds of the place. I think Devin rode the Wildfire (a really HIGH rollercoaster) about ten times---the thing goes upside down six times he says---not a Grandma type of ride at all. He also endured the PowderKeg a couple of times---but he had to rest after that one!!! He said it was really scary....and for him to admit that...it must of been BADDDD!!
Group outside of Silver Dollar City
Kara making her rag doll inside of SDC
Devin on Wildfire...
Grandma and Kara taking a break.
When we got back from SDC the second evening, Mrs. Pam had Devin and Kara paint their palms and put their handprints on the tire cover on her vehicle. She had all the Caringbrige kids names around the tire---with Cure Childhood Cancer in BIG letters and Let Kids Be Kids and the Golden Childhood Cancer symbol. It was really neat that they got to be a part of that.
Getting ready to paint....Mrs. Pam and Dev
Devin painting
Kara and Mrs. Pam painting
The finished product!!!! Devin Kara and Mrs. Pam
On the evening of the second day, Sheila and the kids came out to the Golden Arrow and spent the night with us. We had lots of fun----eating popcorn, making the bracelets that Chris taught Devin to make when he met her in Wisconsin, talking and laughing and just generally having a good time. The next morning we loaded up and went in to Branson to ride the Ducks. The Ducks are a WWII vehicle that runs on both land and sea. The kids all loved that tour of Branson and then out to Tablerock Lake and right into it we went. All the kids got to help "drive" the boat. It was the hottest day of our trip---and it was good there was a nice breeze off of the lake.
Bracelet making party at the cabin
Girls in the hot tub
The Ducks!!!!
Then back to Rogersville for a Braums run---and with tummies full and everyone happy--we said our farewells to Mrs. Pam as she headed back to St. Louis. We went back to Sheila and Rickey's house and visited and let the kids play again for a while---then headed back to Oklahoma....
I think it was a lovely trip---would do it again in a heartbeat. So good to see Sheila and the kids again---and meeting Mrs. Pam made everything extra special---I guess she was our "Bonus"!!
Thanks for stopping by. Please remember our friends in your prayers....especially Angel Ryan's family. Thanks
Tuesday, July 5, 2005
6:30pm. NO pox....good news. Evidently Kara is a bit allergic to mosquitos........she is covered!!! At least its not the pox...that would really put a damper on our trip.
Dev is feeling ok. Tiring easily, but I attribute it to the humidity...its very dry in Utah, so he's not quite used to the humid conditions.
We spent the morning with TSG and the afternoon with Nanny. Its always busy around here. Hopefully tonight we can hook up with some of the cousins and play. I'm sure another trip to Braums will be on the agenda too.
Tomorrow is a 'bus painting' party and picnic at PA. That should be interesting....TSG bought Devin a VW bus awhile back that is in need of a new paint job.
Please keep our friends in your prayers.
Friday 7-08-05....
Greetings from OK. Things are going well?? here. Nanny is home from the nursing home, but sick......so grandma spent most of yesterday at the hospital with her doing tests.
We've already got an exciting morning here..............Kara woke up COVERED in spots.....hmmmmmmmm......I hope its not chicken pox.......we'll keep an eye on her.....its always something!!!
We've already made 2 stops in the past 2 days to BRAUMS......hopefully today we can hit the children's museum and some of the cousins.......depending on Kara.......
Please keep our friends in your prayers.
Tuesday, June 5, 2005
Hi. Its me Devin. I tried to update yesterday, but CB wouldn't let me into my site.
I got back yesterday from Wisconsin. My mom and I went out to see my co-pilot and fellow hippie: Chris. It was supposed to be a surprise, but she really knew that I was coming. Her mom, sister Amy, and niece Jade picked us up from the airport late on Saturday night. We knew it was them because they had a really cool sign to welcome us to Wisconsin.
Amy, Mary, me and Jade at the airport!!
The cool 'Calling all Hippies' sign they welcomed me with....
I didn't get to see Chris the first night because she wasn't feeling so good. The next morning we got up and went to her house. She was really glad to see me!!! I was really glad to see her. She is losing her hair again and needs to start feeling better so she can eat. I feel so bad that she feels so bad. I remember when I was so sick from chemo. She is doing chemo and radiation.........CANCER SUCKS!!!!!!!!!
Me and Chris.......Pilot and Co-pilot of the up and coming Caringbridge bus of Health, Hope and Happiness!!!!!
Chris had some really neat presents for me..............the best thing was the hippie bus that she painted JUST FOR ME. It has our names on it and everything. My mom didn't get a good picture of it and I'm still putting it together. It is sooooooooooooooooooooooooooo cool!!! Thank you Chris...I LOVE IT!!!! I'm going to keep it forever!!
Me and Chris putting the bus together........I'm still working on it!!
I had a lot of fun visiting with Chris's family and friends. They are all super-duper nice and were all really nice to me. We had a cook-out at Jenny and Jade's and all of her family was there. I got to play with Jade and Chris's other niece and nephew; Maddie and Collin. They are so cute and fun to be around!!! Jade and Chris showed me how to make some cool bracelets then we watched fireworks until Chris got too tired. She just isn't feeling good.
I had a good time. I wish Chris would have been feeling better, but the truth is.....cancer is a 24/7 disease...it doesn't take a vacation....it SUCKS!!!!!!!!!!!!!!!!!!!!!!! I feel so bad that Chris feels so bad. Please stop by her site and send her some positive energy and prayers!!!! PLEASE.
Also, don't forget about my other friends that need prayers:
Cutest kid in Kentucky; Ryan
Our local friend; JT
I'm still collecting money for the Light the Night walk..
Click here to donate to my team
Please help....every $1 counts!!!!
Thanks for stopping by.
Friday, July 1, 2005
School is OUT!!! Devin is officially a 4th grader and Kara is a big 2nd grader!! We've got big plans for our time out of school, so the updates will most likely be few and far between!!
Please continue to pray for our friends and have a safe Fourth of July!!!! Devin is feeling good and really looking forward to our big 4th party and of course the fireworks!!!!
Cutest kid in Kentucky; Ryan is still celebrating his birthday!!! If you haven't stopped by, do so!!!
Devin's co-pilot and fellow hippie: Chris started radiation this week and could use some extra prayers.
Also, our new little buddy JT is still in the hospital due to an infection. The kids and I went to see him this afternoon. He is a real cutie!!! Stop by his site, he'd love to meet some new friends.
Thanks for stopping by.....there's still time to donate to Devin's Light the Night walk.
HELP DEVIN' FUNDRAISING EFFORTS !
DONATE TODAY !
Thanks...please sign the guestbook!!!
Wednesday, June 29, 2005
Devin is feeling better today. Not 100but I can't remember when 100as.....long before his cancer diagnosis.
After sleeping 15 hours straight he finally got up yesterday afternoon feeling better. Not great, but better. He didn't do much at all yesterday...played gamecube and that was about it. It was too rainy and windy to get outside. We're still having wierd weather.
He insisted on going to school today. His class is having a 'readathon' so he surely didn't want to miss that. He loaded up a Goosebumps, Magic Tree House and Simpsons book to take to school. Those are his favorites. I told him to call me if he started feeling bad and he assured me he would.
Today is a very special day!!! Our friend Cutest kid in Kentucky; Ryanis celebrating his FIFTH birthday!!! Happy Birthday Ryan!!!
Also, our friend Chris is starting radiation today. Chris is the pilot of Devin's up and coming Caringbridge Hippie bus of Hope, Health and Happiness!!
Just found out our little buddy, JTis back in the hospital and in need of some extra prayers.
Dev is still collecting donations for SLC's upcoming Light the Night walk for the Leukemia Lymphoma Society. If you'd like to make a donation to his team please click here: Every $1 helps and is appreciated.
Thanks for stopping by. Please take a minute and sign Devin's guestbook. He loves seeing who stopped by.
Tuesday, June 28, 2005
To make a long story short, Devin is feeling awful. He went to bed EARLY last night with a killer headache and is still sleeping this morning. His temp is fine, but his color is awful. I've given him pain meds, but the headache continues.
The kids had 'field day' at school yesterday. Randy and I worked in Devin's class from 9-11 doing outdoor games. The first group we got was very energetic 3rd graders....by the third group the energy level was WAY down.......I can only imagine how Devin must be feeling if these 'normal, healthy' kids are worn out. It was just too much and I think he pushed himself too hard. He came shortly after the field games and did nothing. Days like this really make me hate cancer.
No school for him today. I'll see if we can get this headache under control and if not I'll be calling the clinic for suggestions. I hate to see him in pain and for him to go to bed early is just totally out of character. Another watch and wait situation.
Thanks for stopping by to check on Devin. I know he'd like you to check on his friends, so please, please visit Devin's co-pilot and fellow hippie: Chris and cutest kid in Kentucky; Ryan.
There are lots more kids truly in need of extra prayers and positive thoughts so please visit some of his friends.
Thanks.
Saturday, June 25, 2005
Last night was fun. We had a late dinner, then headed to the drive-in. Our neighbors met us there and we watched the new Herbie movie. The kids were all so busy trying to decide what snack to eat next that they didn't pay much attention to the movie. We didn't stay for the 2nd movie...all of the grownups were too tired!!!
Today has been lazy. Randy worked much of the day and the kids and I just spent the day at home. It rained off and on with lightening all around...so no swimming pool. That pool has been basically sitting for the past month. Either its too windy, too rainy or simply not warm enough. I'd like to think we'll get summer weather here sometime...probably while we're gone to Oklahoma!!!
Speaking of Oklahoma; the kids are VERY excited!!! They've got all kinds of plans for grandma and grandpa. Its fun to see them soooo excited!!! They LOVE Oklahoma and everything about it. I guess everything tastes better at Grandmas...I can remember Devin having a bib saying that when he was a baby. I really do believe it is true.
Devin has been rather solemn today. I explained to him that Chris is not doing so well. He's been racking his brain trying to think of something to make her better...and QUICK!!! He's thinking maybe 100 get well cards, but somehow I'm doubting that will do the trick. Cancer absolutely, positively sucks!!!!!! Days like this make it absolutely clear.
It sounds like our Kentucky buddy, Ryan had a good day and we are certainly glad for that!!! Ryan's birthday is coming by in a few days....stop by and offer him some birthday wishes.
I know many other of our friends are in need of extra prayers and support. Many of them have links in the guestbook...please if you have a minute, visit these kids. Even a simple..HI, thinking of you...can make a person's day a little brighter.
Thanks for stopping by. Please sign the guestbook and let Devin know you stopped by. He worked a little on soliciting teams for Light the Night this afternoon. If you'd like to donate to his team,
Please help....every $1 counts!!!!Thanks
Friday, June 24, 2005
Its been a busy week. I'll be glad when things settle a bit. Good news though; RANDY PASSED HIS TEST!!!! We are all so excited and proud of him around here!!!! He is now a full-fledged 'associate'. Only two more exams and he is completely done!!!!!! So exciting. By this time next year he'll be done. I'm so glad.
Dev has been feeling pretty good. He's at school now; he's made it everyday this week...all day!! Quite an accomplishment. He still gets days where he just doesn't feel up to staying all day, so this is terrific!!
If the winds aren't too harsh we are going to the drive-in tonight. I haven't checked what is playing, but hoping that some kids movies are still on. Our neighbors are going too with their kids, so it should be a lot of fun.
Last night Devin said the funniest thing. We were driving home from Randy's dad's birthday with the kids fighting over a sucker in the backseat. Kara kept putting the sticky sucker on Devin to try and make him mad. Well, her plan worked. He was beside himself....he was worried that the "ants were going to attack him" since he had the sticky stuff on him.
We were all dying out laughing, then he got super mad at us. He is so funny. I always tell them not to take food out of the kitchen so we won't get ants in the house....I guess he figured he was going to attract them with the sucker stuff on him. Kara thrives on keeping him mad and worried about something. I guess its part of her job as the sister. I'm sure my brother has some stories he could relay about me.
This morning Randy and I 'camped' with the 1st graders of Kara's class. We set up tent, sang songs and went on a nature hike. The kids all acted like they had a great time and it was fun to watch Kara interact with her friends. She was excited that she was the only one in our group that knew camp songs. She knows lots of them courtesy of Camp Hobe and her mom (a former Camp Fire girl).
Thanks for stopping by to check on Mr. Devin. He appreciates you stopping by to check on him, but doesn't know you've been here unless you LEAVE A MESSAGE.
Don't forget his friends either............Thanks
Boogie...
Ryan
Chris
Collin
Kari
Jaxon
Thursday, June 23, 2005
Wow..Thursday already. This is the kids last full week of school before getting out for their 'summer break'. They are on year-round school so when they go back the end of July they will be in new classes. Devin will be a big 4th grader and Kara will be in 2nd. They are both growing up so fast!!!
We've got big plans while off track. We've got a big 4th of July party planned, as well as a trip to Oklahoma where we'll visit grandma, grandpa, Nanny and lots of friends; including Boogie..........our favorite Okie from Muskogee!!!
After a few days at grandma's we'll head to see our friends, The Bohannons, in the Branson, MO area. Sheila and I have been friends for years and she is the one that 'introduced' us to Mrs. Pam. Mrs. Pam was her daughter Aryn's preschool teacher. Mrs. Pam has since created the "Preschool Pen Pals" who are very instrumental in sending happy mail to caringbridge kids across the globe!!!!!! WE WILL FINALLY GET TO MEET MRS. PAM, LIVE IN PERSON WHILE IN MISSOURI !!!!!!! We are all so excited!!!!! I just know we're going to have a great time!!!
Back to today....Devin woke up not feeling so great, but is at school. They've been doing lots of fun stuff for these last few weeks of school and needless to say he doesn't want to miss a thing!!!! I think being around friends and normal kid stuff is great for keeping him feeling good!!
For those of checking in on cousin Breanne...she is FINE!!! The biopsies were clean and she is good!!! What terrific news. She'll need to keep a watch on things, but thank God it had not spread!!!
Ryan
has been having some good days, but still needs your prayers. He is such a cutie and is getting ready to have a birthday!!!!
Chris still is feeling pretty rough. Please go by and leave her some happy thoughts.
Collin has been feeling pretty rotten too.
Kari is undergoing ANOTHER biopsy today and could use some support.
I know there's lots more out there.
Thanks for stopping. Please sign the guestbook and let Devin know you were here.
Wednesday, June 22, 2005
Things are good and busy here. The kids had a great time at the party yesterday. Worn out, but in a good way!! Randy landed up having to pick them up from school, then take them to the party.............wierd situation, but I landed up 'almost' falling down my stairs, then was unable to put any weight on my foot for awhile. It seems good now, so I'll just learn to be more careful!!!! Always something to keep it exciting around here.
Well, I guess if you've heard any news within the last 24 hours you are privy to Utah's BIG NEWS!!! Yes, thats right the missing boy scout was found. Brennan's recovery! Of course everyone is ecstatic in our state over this great news. We STILL have a missing boyscout from the same area from last year, so this truly is a miracle!!! Its great to read of the THOUSANDS of volunteers who dropped everything to look for this boy!!!
It makes me wonder...........if so many people can drop everything to look for ONE child, what is stopping us from making the commitment to spending a few hours walking to help find a cure for cancer???????
If you're here in the SLC area we would love to have you join us for the upcoming Light the Night walk on September 17th at Sugarhouse Park. That's about 90 days away for our local walk. I know other LTN walks are set up for late summer/early fall in YOUR area!!
Please make a pledge today to help not ONE, but many people fighting cancer. We need a cure!!! We need your help.
Click here to donate to Devin's team
Please help....every $1 counts!!!!
Please remember all the fighters in your prayers:
Cutest kid in Kentucky; Ryan
Devin's co-pilot and fellow hippie: Chris
Our friend Jana's father who just found out he has throat cancer. Jana and her family have been quite the support for our family. Jana herself battled with NHL....just like Devin!
Our 2nd cousin, Breanne, who is undergoing a biopsy TODAY to determine whether or not the melanoma is in her lymph nodes.
Heaven became a brighter place with Haley joining the angels yesterday.
Jake passed on the 16th.
Please sign the guestbook....................
Tuesday, June 21, 2005
As we inch closer to what we believe will be the end of Devin's chemo treatments the updates seem to be a little further apart. That is a good thing. Devin is feeling better since the steroids are done and just enjoying being a kid.
He is a kid....a smart kid...and one that has had to 'grow up' before his time. Sadly that is what cancer does to a person....it really makes you think!!
Dev and Kara actually woke up this morning BOTH looking a little pale and moving a little slow. No way were they going to miss school.....Kara had 'dot' day and they both have a birthday party after school. I could tell Dev wasn't feeling his best when he suggested maybe I pick him up from school an hour of so early so he could REST before the party!!! (Now that makes him sound like he's closer to my age!!!)
Anyway, I've been a little behind in the guestbook department. Randy's company is changing insurance effective July 1st, so I've been backlogged trying to get all of our medical stuff cleared up before the 'big change'. I may be fooled, but I am NOT looking forward to switching. Our insurance case manager is the best and I'll surely miss her. Thanks Deedra!!
On a sad note, I did get a minute and begin checking on MY KIDS as I call them. The pain never ends. Our buddy, Jacob passed on June 16th. Please go offer your support to this family. He was such a fighter!!! All of these kids are........!!!!
Kids are NOT supposed to be fighting cancer!!!!!!! No one should have to!! Devin's started fundraising in full force for the Light the Night walk coming up on September 17th. If you can donate and/or would like to walk you can either click on the link:
HELP DEVIN' FUNDRAISING EFFORTS !
DONATE TODAY !
Or email me at: tiredofcancer@yahoo.com
Thanks for stopping by. Please don't forget our friends in need of extra prayers and positive thoughts
Ryan the cutest boy in Kentucky
Jaxon & his dog Chewy
Chris the hippie girl
WE NEED A CURE FOR THESE HORRIBLE ILLNESSES!!!!!!!!!!
Please sign and let us know you stopped...
Sunday, June 19, 2005
First off.....Happy Father's Day!!!!!!!
We're due some good weather here so we'll be having Randy's parents over later for a dad's day BBQ. It should be a good day!!
Been busy here. Devin did NOT go to school Thursday or Friday. It has been a highly emotional time for him...I guess sometimes steroids do that to a person, but this time has been especially bad. He's not quite been himself, but no real complaints....don't know if that makes sense, but basically nothing hurts...he's just not feeling terrific.
We did go to Relay for Life. It was our first time, but believe me it will not be our last. It was tons of fun!! We saw several people we know; including Tuli and his family. Tuli and his mom even gave a little speech about their life with cancer!! Great job guys!!
Our new friend, Brenna and her mom also spoke. They have quite the story. Please go and check out her site. The methods they are using to treat Brenna are not traditional, but are WORKING!!!!!! Like mom said in her speech; we don't really care what you want to call it, we just WANT A CURE!!!!
Devin and Tuli on the Survivor Lap!!!!!!
The night was great!! Lots of food, music, games and a fun carnival to keep the kids entertained. The kids had a blast. When we first arrived the winds kept most of the inflatable things on the ground, but by the time it was getting dark the rock wall and other rides were up and running!!
Devin climbing the rock wall for about the 10th time!!!
During the event they continued to draw names for door prizes. Our little neighbor girl Samantha was thrilled to be the 1st name picked and owner of her very own, life-size "Toucan Sam". I'm sure mom and dad were thrilled too!!
The 2 Sams!!
The luminaria lighting ceremony was very neat. Due to high winds they were unable to use candles so they used multi colored glow sticks to light them up! Not only were the bags very symbolic, they were also very colorful!! I wish I could have got a decent picture of the stadium with those bags, but nothing turned out good enough to put here.
Devin and one of his luminarias. He was thrilled to see his name and friends' names on several bags!
A bag for those still fighting!
A bag for those who fought so bravely!
All in all it was a night to remember. It was a terrific family event with ALL money going to the American Cancer Society. Devin was given his 'Living Proof' purple shirt and medal for being a survivor!! We all thought that was extremely nice.
Our windblown family at the Relay for Life.
Before we left the relay we stopped by the table where names were being drawn for door prizes. Devin had won a putter earlier in the night, but we were hoping that Kara or someone else we knew might have won. Sure enough, while we were on the track walking Kara's name had been called...as well as mine and Randys!!!! Unbelievable!! Randy won a gift certificate for a free 1 hour massage, I won a hand-made step stool and Kara was thrilled to win one of those mini-tents that are on display trying to sell tents!! (they don't sell those....I know I've asked before) She was ecstatic. It is perfect for barbies.
Thanks for stopping by to check on Devin. Please remember our friends who are in need of extra prayers. Especially our favorite Kentucky cutie.
RYAN
Friday, June 17, 2005
A real update!!
This week has been crazy! The kids went back to school after being off for 3 weeks, both had zoo field trips and Devin had his monthly vincristine and 3 month scans!!!! Busy.
I got the official word back on scans. CLEAN. He still has that residual mass (very small area where cancer started in his mediastinal area), but it remains CLEAN. He's thrilled, we're thrilled.......how could we ask for any better news?? GREAT....the pressure is 'off' until gallium scans in September.
The blood work was NOT as great as I expected. WBC is 3.0 which is still below normal. ANC was 2100; everything else was within normal range. I had this feeling that all the counts were going to be through the roof..this was not the case. (Devin told me when he got home from camp that he did NOT get all of his nightly chemo because he was too tired to go to the infirmary to pick it up!!!!)
Anyway, Dev went to the zoo on Tuesday and had an excellent time. None of us have been to the zoo since before he was diagnosed; with a weakened and sometimes non-existent immune system we were told to stay away from animals...so of course we did. He was thrilled to be able to go.
Tuesday afternoon was chemo. Dad went with us since we had scans too. It was Randy's first trip to the infusion unit...boy was he impressed. Double the time and effort to get the same chemo....I still haven't figured that one out!! Anyway most of the waiting time was due to a pharmacy back-log...and heck by now we are certainly used to playing the waiting game.
Wednesday Devin surprised us all by feeling up to going to school. He woke up feeling rotten so I loaded him up on pain meds and before too long he was insisting he go. Wednesday is his counseling day at school and he really looks forward to that......being out of school he hadn't gone in 3 weeks, so he was anxious for that. He did last all day, but by the time he got home he was worn out!!!
Wednesday night was crappy. Devin becomes highly emotional while on steroids and everyone in his path gets to pay the price. He was crying and weepy most of the night. Finally after unable to get him calm I had him take a warm bath and go to bed early......even mom's have their limits of how much whining they can take...and I knew he was just completely worn out!!
Thursday he woke up in pain and looking pale. I got him up and gave him his morning meds and a pain pill, but 45 minutes later he still looks and acts awful. I call Randy to come and help me....I'm due to go on Kara's field trip to the zoo.
Luckily Randy's work is close. He gets home, I feel him in on Devin and Kara and I go to school. We spend the day at the zoo on the warmest day (90) so far this year!! It was fun, but tiring. I had Kara and two of her little friends in the group. Those energetic little girls were dragging by the time we made it back to the bus hours later. I was too; our zoo has a lot of hills to go up and down.
We came home to find Devin feeling better. Randy said he had just been lazy all day and taken it easy. Great. No trips to the chiro...which I thought might be necessary, but he has developed a harsh cough and sore throat. Just going to keep an eye/ear on that. I think being on steroids amplifies any problem he is having.
Tonight is our Relay for Life. The kids are excited. We've got a survivor dinner at 5 tonight, then the carnival and relay will begin. We get to meet Tuli and his family there so we are really looking forward to that!! Also, Brenna and her family, so it will be fun!! Also, some of our neighbors and their kids are coming. Exciting!!
This afternoon after school we are getting together with Harrison and Samantha (neighbors) to have a 'tie-dye' party. Devin and Kara had so much fun doing those at camp that I bought a kit to make Father's Day shirts. We are looking forward to that.
Better get off of here and get these kids up. I'm hoping Devin feels good enough for school today. We'll see.
Please remember our friends in your prayers:
Ryan
Jaxon and Robin's site
Chris...aka Hippie girl
I'm sure there are others...
Please sign and let Dev know you stopped.
***Also....I know melanoma is supposed to be rare in children, but if anyone has any information on a child with this...or info in general please send me an email. I got a call from my mom last night that one of our cutie 2nd cousins had a mole taken off earlier this week that is indeed melanoma. Any info is appreciated!!
Wednesday, June 15, 2005
Long day yesterday. Initial impression of the scans was good...CLEAN. We'll get the 'final' report today as well as results from his bloodwork. I told Dr. L. about him missing his chemo while at camp and he said he wouldn't hold any 'good blood' against Devin...meaning he would NOT increase chemo due to high counts twice in a row. What a relief!!
Dev seemed to tolerate things well yesterday. Everything took a little longer than he thought it should, but that is just typical clinic stuff.
We started him on his steroids last night so the fun has begun!!!
Thanks for stopping by to check on Devin. Please leave him a message and let him know you stopped.
Monday, June 13, 2005
We've had a lazy weekend since the kids have been home. They've both just been exhausted; especially Devin. Having so much fun at camp just wore him out!!
Devin did play his final soccer game of the season on Saturday. We missed seeing him get his trophy. Randy and I went to see John Edward while Devin played soccer, then went to a friend's house to play.
Today was back to school for both of them. They will go for 3 more weeks then be off until the end of July. I'm going to get some tickets tomorrow to go to Oklahoma. I told the kids and they are sooooo excited!!! I can't wait to see everyone. Its been a long time. I mean we were there in November, but it seems like forever.
My Nanny is back in the hospital. She is really not doing well at all. Of course the kids are worried about her. I am too. I tried to talk to her on the phone tonight and it just wasn't working. Two days ago she seemed really good. It seems to be happening fast. I'm sure my mother doesn't feel that way. Its been pure hell for her the past few days. Hopefully Nanny will show some signs of improvement soon.
The kids had a great day today. We FINALLY got a break from all these rains. I am so tired of rain I could scream!!! We've been stuck indoors more often than not and its been getting old. Our garden is a giant mudhole as is the playground area. We're supposed to hit 90 by the weekend. We are ready!! Randy set up the pool a couple of weeks ago and so far the kids have just been in it about 15 minutes due to rain and cold weather. Hopefully we are going to get some real summer time weather soon.
Tomorrow is routine chemo (vincristine) and 3 month scans for Devin. What a dreaded day. I know things should be good, but deep down I cannot help but worry. Thats the crazy thing about cancer....it really has no rhyme or reason. Anything is a possibility and cancer is so damn sneaky that it keeps you living on the edge. So unfair.
Dev starts back on steroids tomorrow too.....oh, the joys of chemo!!
Thanks for stopping by to check on Devin. We appreciate you stopping by to check on him and he loves to read your messages. Please drop him a line....even if its just a HI and let him know you were here!!! Also, if you'd like to contribute to his "Light the Night" walk you can do so online:
HELP DEVIN'S FUNDRAISING EFFORTS !
DONATE TODAY !
He is super excited about all of the money he has been collecting. Believe me, every little bit helps!! Last year most of his donations were $5 and $10....and his grand total was $880. He'd like to at least DOUBLE that figure this year. Please help if you can!!!
Also,
PLEASE remember all of our caringbridge friends in need of extra prayers:
Chris the hippie girl
Ryan
Jaxon
Saturday, June 11, 2005
HEY.....IT'S ME DEVIN!!!
I had a great time at camp. I met JT's
brother Riley at camp. He is the same age as me and his brother JT has leukemia. I am going to see if he can come to my house sometime. He is really nice.
It rained alot while we were at camp. It was lots of fun though. We hiked, did crafts...like made a windchime, my sister did yoga, we did tye-die t-shirts and did field games.
We had so much fun. We didn't even mind when it snowed on Monday night!!!! Yep, it snowed at summer camp!!! My mom and dad had no idea, but that was ok. We all kept warm even when it rained and had fun. The sun finally came out on the last day.
I will definetly want to go to Camp Hobe again. We both had soooo much fun and met so many nice people!!! Our counselors were all really nice and fun to be around. 
We got new bracelets while we were at camp. They are blue and say "Til there's a cure.....there's camp". I love collecting bracelets!! While we were checking out my mom say Brenna and her mom and bought some of the "HOPE" bracelets which are for the upcoming Relay for Life to benefit the American Cancer Society. Ours is next Friday the 17th.
My mom saw lots of other moms to talk to when they picked us up; Amanda's mom and Elizabeth's mom. Elizabeth wasn't able to come to camp with us because of low blood counts, but hopefully she'll get to go next week. Good luck Elizabeth!!! 
Thank you for stopping by to check on me while I was gone. I missed all of you. Thanks for signing in and for all the donations for my Light the Night walk. HELP DEVIN' FUNDRAISING EFFORTS !
DONATE TODAY !
I'm really excited to see my totals going UP, UP, UP. I'm hoping to at least double they money I raised last year!!!! Help me out if you can. Even a little bit can help.
I'll update more later. I'm tired.
My mom will work on getting the new pictures up.
Sign the guestbook PLEASE...
****Don't forget our friends in need to extra prayers *****
Jaxon
Ryan
Chris..hippie girl and imaginer
Thursday, June 9, 2005
Well, I got a letter from camp today. What a surprise!! I had no idea who it was from of course until I opened it...I had pre-addressed and stamped envelopes for the kids.
Anyway, my #1 son wrote the funniest letter telling us things were great; EXCEPT for some kid who talks very LOUD and at the moment was giving him a migraine. I just had to laugh..and laugh..and laugh. I could just see Devin sitting there wondering what to write and telling me that. He is so funny!! He ended the letter by asking us to come to the camp as soon as we get the letter.
No news from Kara. Who knows, maybe she really did write and we won't get the letters until she's been home a week. It sure was neat to get one from Devin today though...such a welcome site in the usual mix of bills and pre-approved credit card applications!!
I'm hoping they both have lots of great stories to share when we pick them up. We'll be picking them up tomorrow afternoon. So exciting!!!
Thanks for stopping by to check on Devin. He loves to read your messages so please do drop him a line. Our buddy, Ryan is still in need of extra prayers. Please go to his site and let him know you are thinking about him. He is such a cutie!!! We love you lots Ryan and think of you every day!!!
~~Almost forgot....Devin also got his fundraising pack in the mail for the Light the Night walk coming up in September. He's got a couple of checks in the mail this week for the fundraiser, But I've added a link so you can use your credit card to donate directly to Devin's team. Any and all amounts are greatly appreciated!! We are trying to get a company to match what he collects...so the more he collects the better!! Please help Devin by donating today. We need to help find a cure for this horrible disease NOW.
HELP DEVIN' FUNDRAISING EFFORTS !
DONATE TODAY !
Wednesday, June 8, 2005
No news is good news. I haven't heard a word from camp so I have to assume the kids are having a super great time. I hope so. I seem to be ok with them gone during the day, its the night time that is hard. Just two more sleeps for them away from home. I'll be glad to have them back!!!! They have been away from us for a few days, but never before have I gone without talking every day to my kids....it is wierd!!!
Randy and I have been keeping busy. Its is SO QUIET here without the kids. Its almost too quiet to think. We really, really miss them and hope they are having tons of fun. Its been raining here in Salt Lake since they've been gone. Hopefully they have seen some sunshine while they are at camp. I know they were both looking forward to swimming.
Devin at camp
Today has been an interesting day. I FINALLY got up my nerve and set up Devin's scans for next week. I cannot describe how much I dread doing those. He'll go in next Tuesday for chemo, then scans. Of course we are hoping and praying that everything is still clear.
I talked to a local caringbridge mom today. She has a daughter that is off of treatment for ALL and a neighbor boy who has finished treatment for another type of cancer. Both of these kids are at camp this week with my kids. Anyway.....another boy in their neighborhood was diagnosed just this week with the SAME EXACT CANCER as Devin!!!
I've never heard of another kid in this state, much less so close to us. Please keep this family in your prayers as they begin the journey into this nightmare. I know very little about him, but am hoping that his family will open a caringbridge site. Caringbridge has been a tremendous source of support for Devin and our family.
Kara with her gift bag at camp.
Thanks for stopping by to check on Mr. Devin. He appreciates your messages so please drop him a line. Also, don't forget to check on his friends. I know that little Ryan has not been feeling well. Also, Chris isn't feeling too great.
Monday, June 6, 2005
The kids woke up bright and early this morning excited to get dressed and on their way to camp. I was worried they might be hard to get up, but that was not the case. Even the pouring down rain didn't curb their enthusiasm!!
We got up to the camp and began the check in process. The enthusiasm was TREMENDOUS!! Everyone and I do mean everyone had a HUGE smile on their face. Randy helped the kids get name badge necklaces made while I got everything finalized. The warm atmosphere and smiling faces made it very reassuring!! Looks like it will be a fun filled week!!!
After getting through all of the check in lines (there were 4) we loaded up the stuff and were on our way to Kara's cabin. She picked out a top bunk and quickly got settled in.....she was sooooo cute. So much excitement and a smile that covered her entire face!! Her counselor, Ivy, had made up 'welcome' bags for the girls in her cabin so Kara thought that was extra special!!
Kara getting settled....notice the poncho...courtesy of a water-logged camp!
Next to Devin's cabin. He too picked a top bunk and quickly began setting up camp. He had the biggest smile on his face as he got things set up. While waiting for Tulito show up he got out some paper and started drawing. His counselor, Eric, started talking to the boys about coming up with a cabin name and cheer....Devin thought that was the coolest thing he ever heard of!!! Its so good to see him soooooo excited about camp!!! I just know he'll have a great time.
Devin, Kara and Eric....Kara refuses to miss a photo opp.
Tuli picked a top bunk next to Dev's and they got their sleeping bags set up so they can talk at night. Devin is really excited to tell ghost stories at camp. He's been thinking up new stories for the past couple of days. He's funny.
Devin, Tuli and Miss Kara in the boys cabin.
We kissed Devin good-bye...NO TEARS...just smiles...and took Kara back to her cabin for good-byes. She was all smiles as she gave us one last kiss before starting her camping adventure. How exciting!!! I felt so comfortable leaving her there. I know she will have a great time...even if it does insist on raining all week. Hopefully the rains will let up soon.
Kylie, Kara and Lani (Tuli's sister)in their cabin.
Honestly I thought this might be a really hard day; dropping my kids off for a week of summer camp. I am grateful for the many, many volunteers working at the camp who made me and Randy feel so comfortable leaving our kids. We both felt so at ease as we drove away...no second thoughts, no what-ifs...that is a good feeling!!
Thanks for stopping by to check on Devin. He did tell me to make sure and visit our caringbridge friends while he was away.(He doesn't have to beg me to do that....I'm as addicted to these kiddos as anyone) He certainly wouldn't want anyone to think they had been forgotten...plus I will have to update him on everyone on Friday!!
Please keep our caringbridge friends in your prayers. Our sweet friend, Ryanis in need of extra prayers. He is one of the toughest kids you'll ever meet!! What a sweetheart!!
I'll update if I get any 'news' from camp. Hopefully they will both have a super week with lots of great memories to share.
Saturday, June 4, 2005
Devin here..
For those of you who said YES I say THANK YOU. Maybe you guys can help make this dream come true. I really, really think this bus idea is a good one.
I am still mad at my dad. Does anyone know how come he hates VW's so bad?? I don't understand it. Doesn't he know that I'm a hippie and need my own bus??
Today I had a soccer game. YAWN. We got the crap beat out of us. It was BAD. I was so glad when the game was over. We got ZERO and they got NINE! Our team really needs some serious practice. Next Saturday is our last game.
This afternoon we got all the stuff on our deck. Kara and I went swimming for a little while, then our friends came over. I can't believe we didn't let off any fireworks.
Thanks for stopping by to check on me. Please tell my dad to get me that van. I need it!!!!! Please sign my guestbook.
Here's a picture of me:
Kara's new haircut. She got 7 inches cut off and its still long!
Kara riding her scooter in front of our house
Friday, June 3, 2005
Its Devin here.
I am mad at my dad. Hey that rhymes.
He won't buy me a VW bus that I found today. Its only $400.00. Why does he have to be so cheap??? Gosh I don't get him at all!!! Dad if you're reading this I have most of the money. I can earn the rest and pay you back. PLEASE.
I'm scared. If I don't get a VW my life will be ruined! PLEASE someone help me talk my dad into this.
Sign my guestbook and vote YES for my dad to help me!!! Please!!!
Tomorrow is Miffy's birthday. Its actually already her birthday in Scotland, but she is still asleep. Go to her site and wish her a Happy 4th Birthday!!!!! We love you little Miffster!!!! Here's the link: Kayla's site.
My sister got her haircut today. She got 7 inches cut off. She loves it. She keeps bragging about how good she looks. I'll have my mom put up a new picture of her.
I'm ready for camp. I found out yesterday that Tuli and I will be in the same cabin!!! That is awesome!!!! We are going to have so much fun!!! My mom bought me a new sleeping bag yesterday...it is cool.
Don't forget to sign my site. If you don't sign I won't know you were thinking about me and I won't get your vote.
Friday, June 3, 2005
~~Finally an update. Things are going well here. The kids are SUPER-EXCITED thinking about camp. Me, on the other hand...well lets just say I'm a tad bit nervous. Neither of them has ever gone to camp before or been away from home for soooooo long. They will be fine. I just keep repeating this inside my head.
I have mostly positive memories of camp; camp fire camp, church camp and woodman camp. Always a fun, yet tiring experience. I know they will have a good time, but deep down it burns me to think that either of my kids even 'qualifies' for cancer camp. What the hell has happened here? Cancer was not in my plans for anyone in my family; much less one of my kids!!
Camp will be good for Devin. In some ways I guess I can say maybe cancer has even been good for Devin and our family. It has made us appreciate each and every little thing all the more. Nothing is taken for granted and I'd like to think we don't 'waste' alot of time....UNLESS that is what the kids WANT to do. Does this make sense? We LIVE each day and try to make the most of it. We don't sweat the small stuff...and if you really think about it MOST of life is small stuff!!
I can still find more horrible, negative things about cancer in the blink of an eye. Devin knows more people on a first name basis (mostly kids) that have died than I do...and he's just nine years old!!! That is very wrong. He can spell the names of a lot of chemo drugs as well as list side effects for them. This is wrong. He knows TOO MUCH about cancer, which is a curse in my opinion. He often times asks me about relapse and the 'what-ifs' that unless you've lived this sh** on a day in and day out basis you just don't think about.
Thanks for stopping by to check on Devin. He loves your messages so please drop him a line!!
Wednesday, June 1, 2005
Devin here....
I just sent God an email. I found his email address on this one website. I told him to bring Christopher back to earth without cancer.
Today is my dad's birthday. We went shopping today for him. I am buying him a U2 single record. Its going to be a surprise. We also bought him some other surprise stuff.
We made him an ice cream cake tonight. It has Reeses in it. I love ice cream cake.
Today is Jaxon's birthday too!!! Please go wish him a happy birthday!!! He is one of my friends in Minnesota.
We love you dad!! Happy Birthday!!!
Love Devin and Kara
Monday, May 30, 2005
~~~From my endless vault of baby pictures.....Kara is 7 months old, Devin is 2 years and 7 months....and that is Kara's headband he insisted on wearing~~
Its been a rather uneventful day here. I guess that could be considered good, but honestly I have felt a bit lost. I can remember as a kid Memorial Day being a BIG deal. I really miss being 'home' for these types of things. I am so past ready to get to Oklahoma. It has been a long time!!!
The kids are wanting to go back too. Devin was just talking today how he 'needs' some Braums ice cream. I would like for them to see their only living great-grandparent (my nanny) before her time on earth is through. She's 89 years young and getting a little weaker with each day. I know she worries herself silly about Devin and it would be good for both of them to see each other. She LOVES seeing the kids and always makes sure and has a stash of popcorn and cheese crackers for them.
I miss my family. I miss having people around that love and adore my kids. I'm going to have to get some tickets and get back to Oklahoma. Last time we were there was at Thanksgiving and of course Devin got sick shortly after coming home and landed up in the hospital......the thought of a repeat performance is what keeps me grounded.
Devin & Kara during Devin's 'fire truck stage' which actually lasted several years.....man, how he loved those fire hats!!
We'll get to Oklahoma one of these days. I'd like to take the kids out to see everyone, then drive into the Branson and meet up with Mrs. Pam and my friend Sheila and her family. Devin would like to go to Silver Dollar City again (we were there just a few weeks before he was diagnosed). Anyway, one can dream. One of these days. I just need to keep this kid well and take it one day at a time.
Thanks for stopping by to check on Devin. He's looking and feeling good....getting ready for upcoming camp. Excited!!
Please sign the guestbook and let him know you were here.
Sunday night 5-29-05
Does anyone know these kids??
This is a picture of Devin and Kara taken around November 1999. Back in the carefree days of no worries and no cancer. We took everything for granted that everything was going to be perfect and it will be again one of these days...
Today was Christopher's birthday. We set off blue and yellow balloons in his honor. We took a drive up Parley's Canyon east of Salt Lake and landed up taking the Lamb's Canyon exit. It was just beautiful. Lots of yellow and blue flowers dotting the mountainside. A perfect place to launch our balloons.
We sang Happy Birthday and let them go. I still can't believe he is gone. Such a fighter!!! Thank you Christopher and family for being such an inspiration to Devin and the rest of our family. Your courage will not be forgotten.
Hippie kid and his sister with some of the balloons we launched.
Heading up to Christopher's party!!
Been a rather low key day around here. Devin is feeling and looking good. Still not eating much, but thats ok. His energy level seems great. We've been talking a lot about upcoming camp today. Mom is getting VERY nervous. I'm not so sure I'm up to sending BOTH of my babies away for a week..........Devin is a lot braver than I am. I need some sign that this will be ok. I'm not feeling so good about it today. His only concern so far is he won't get his meds on time. OK.
Forgot to mention that Devin lost a tooth on Wednesday. He was so proud of himself. The first one that didn't take real 'work' to get out. He said it felt loose, he wiggled it a bit and then it was right in his hand. The toothfairy must have been on vacation...so we decided...she kept forgetting to leave him money!! Don't know what is up with her; getting old I guess!!
Devin & Kara decided maybe she was on vacation and had a "substitooth" tooth fairy. They thought that was the funniest thing they had made up in awhile. Oh the humor of a first and third grader!!
Thanks for stopping by to check on Devin. He loves to see who reads his site, so please take a minute and sign his guestbook.
Sunday, May 29, 2005
Yesterday was a good day. The guys finished our deck pretty early in the day so that was exciting. Another week and we can put our furniture and plants back in their places.
Randy just worked a little yesterday morning, then he came home and we packed up a picnic and headed up to Wyoming. You guessed it: an illegal fireworks run for the #1 son. He was beyond thrilled!!!!! Randy let him pick out enough fireworks to light up the entire neighborhood. Now its ALL Dev can talk about. It was a good day. Even better, we made it back across the state line without getting stopped. What a day!!
Today Devin has big plans. We will be launching our blue and yellow balloons in honor of Christopher today. This is his 20th birthday and his first away from his mom. I've got to get notes made up to attach to the balloons and figure out where we'll launch them. We're not too far east of the flight path of the SLC airport so we're going to have to launch our balloons elsewhere. Happy Birthday Mr. Christopher!!!!!!
Thanks for stopping by to check on Dev. Things seem to be going well. He's starting to talk a little about upcoming camp; June 6-10th.....a tad bit nervous!! (ME TOO) Please sign the guestbook and let him know you were here.
~~~Also, our new little buddy, J.T. is in the hospital again and could use some cheering up. Please stop by his site and let him know you're thinking about him. He's a cutie!!
Friday, May 27, 2005
The past two days have been pretty good. Dev is starting to feel better and have more energy. He's not eating much of anything and of course that worries us. Hopefully his stomach pains will be a thing of the past when all this unneeded medicine works out of his system.
The weather has been great so we have spent quite a bit of time out on bikes and scooters. The kids both love to be outside and the dogs love having everyone outside talking to them. Its so funny to see how excited the dogs are just to have their people around.
Yesterday Devin made it to scouts and he thought that was really cool. They did a bunch of water balloon games and I can't think of any kid that could resist that. He was especially impressed that the balloons were 'tie-dye'. I think Stacy was thinking of Devin when she bought them.
The painters were here working on our deck most of the day. It is coming along really quick!!! We are so excited to have it fixed again. Devin is really planning this party out BIG. He's even trying to talk dad into driving up to Wyoming to pick up some 'illegal' fireworks. I don't know where he got the idea, but he's been talking about it ALL DAY.
Tonight we hung out at our neighbor's house and just relaxed. We ordered pizzas, which Devin didn't eat, and just enjoyed the weather. IT is soooo nice right now. Just beautiful weather. The kids all got along just great riding scooters, playing frisbee and of course the girls doing their cartwheels.
We have no plans for the weekend. I think Randy finally has all of the sprinklers up and running so maybe he'll want to do something. We shall see. The kids are usually always up for an adventure, so we'll just take it one day at a time and see what happens.
Thanks for stopping by to check on Devin. He loves your messages so please do drop him a line.
Thursday, May 26, 2005
Devin is sleeping in this morning. Its nice to see him looking so comfortable. The last week or so haven't been so kind to him. Probably the overload of all those drugs. Now that he's off of those he should start feeling LOTS better.
We've had some beautiful weather here in SLC. Perfect, mid 70's. The kids are making the most of it; riding bikes and scooters and just enjoying the sunshine. Devin has decided he's a 'grown up' since I allow him to ride 'all the way to Taylor's house' with his sister tagging along and me watching all the way. He loves his new independence. I can only imagine he feels like he's had not much of a say in his life for the past while.
We are in the process now of getting our deck re-done. Dev is so excited. It has looked so bad for the past year that we haven't enjoyed it as much as we ususally do. Word to the wise...next time you need some major work/painting done around your house CHECK THE CREDENTIALS of the person you are hiring. We learned the hard way that a fancy business card does not ensure a person is a licensed professional!!
Anyway, Devin is planning a BIG party for when the deck is done and the pool is up. So much excitement around here!!! I love to see him so excited and full of plans. He's definetly a planner. Cancer tried to take that away from us, but he's still got it!!!! He loves planning out the food and guest list. He's been reading recipes for the past couple of days looking for good ones. He's so cute.
We met a new caringbridge friend while in clinic yesterday. J.T. was just diagnosed with A.L.L. this past December and his family could use some support of our caringbridge friends. Please stop by his site and let him know you are thinking of him.
Also, if you've got some money thats burning a whole in your pocket please consider donating to Devin's Light the Night fundraising campaign. Also, if you live in the Salt Lake area and would like to join his team for the walk on September 17th we would love to meet you. Just send me an email. Click on the Leukemia/Lymphoma link above to donate. Thanks.
Please, don't forget to sign the guestbook and let Devin know who stopped by. He loves reading your messages.
Wednesday, May 25, 2005
Let me start off saying Devin is fine. After several phone calls the clinic agreed to see Devin this afternoon. I called them at 8:30 and got no response. By 9:30 I give up on them and make a call to a gastro. dr. I have seen in the past. The gastro. office refers me to another pediatric gastro up at PCMC.
I get an answering machine for the peds. gastro dr. I leave a VERY detailed message explaining about the scans that were done, dates, drugs Dev is on, etc.. I also explain in my message that I feel Devin is getting the run around from the oncology clinic (understatement)
Well, pretty soon my phone rings with the oncology call nurse on the phone. She has a panic in her voice and asks what is wrong now. I explain Devin' current symptoms and she says he 'definetly' needs to be seen TODAY. She'll check the schedule and call me right back....so she does. She asks me how soon I can get there. I tell her within the hour......she then asks if we can get there sooner. This worries me, thinking something is going to explode in his stomach or something....sure....I tell her we can be there in a half hour.
Once in clinic they send Devin for another xray. We see a doctor we haven't seen in months who says everything is 'fine'. Just a little bit of stuff in there, but nothing to be considered abnormal. She said it certainly looks better than the 4-17-05 scan and certainly better than the 3-22-05 scan. OK....this makes NO sense.
So we figure out that the scans had been mixed up (date wise) and Dr. L. was ordering all of the meds based on the 3-22-05 scan, rather than the 'improved' scan of 4-17-05. So this means that Devin was given all of these meds to try and resolve a problem that had actually improved over time, not become worse!!! Talk about exasperating....
Actually exasperating is an understatement. To find out that the doctor that we had put our trust into had mixed up the xrays was disheartening. To find out that the call nurse and the other dr's she was supposedly consulting with all of those times I called in to get some help for Devin couldn't figure that out the scans were mixed up is maddening.
Needless to say the TRUE reason for Devin's problems now revolve around the fact that his body is OVERLOADED (a bit of an understatement) with the laxatives. 3 kinds of medicine twice a day for several days could get anyone's system a little fouled up!!! Anyway they want him off of the latest drugs to give his body a chance to get back to normal....the pains are spasms from overuse of laxatives. The fact that food passes through him like water will continue to happen until this medicine is gone.
Can you tell I'm just a tad bit frustrated??? I'm angry that no one and I do mean NO ONE wants to own up to the fact that an error was made. Furthermore no one would have seen Devin today...probably just added yet another drug to the mix if I hadn't kept on calling them, then had the gastro docs calling to bug them. They never did admit that the gastro dr's called them, but I can almost bet that is who got them jumping.
The next major upset; Randy asks why the urgency in getting up to clinic with 1/2 hour? The dr. replies that she wasn't aware it was an emergency. She bails out of the room to talk to the call nurse, then comes back to tell us that if Devin needed 'further testing they didn't want to have to stick around until late'. OH........so this situation is STILL about THEIR CONVENIENCE.......lovely. I told the doctor then and there that that was exactly what the problem was...they DO NOT put the child first....always themselves. The call nurse doesn't call back in a timely fashion....EVER.....that is just the tip of the iceberg.
Anyway, he is ok now. Off of the 6 doses of explosives that have kept him feeling like crap for the past week.
Thanks for stopping by and please sign the guestbook and let Devin know you were here.
Tuesday, May 24, 2005
Things are pretty much status quo around here. No real new developments with Devin. Things are still moving rather slow.....the clinic did introduce mineral oil to the mix yesterday, but no developments yet. I'm really, really, REALLY getting worried. I don't think they understand my worry and I certainly don't feel like they care. Hopefully things will turn around today.
The A/C guy showed up about 7pm last night. Evidently our A/C is leaking puron (the new alternative to freon) very slowly. He could not find the leak, but went ahead and refilled the tank. He said he MAY have fixed it by tightening things up, if not, surely it won't leak for another 2 years..................we shall see. Anyway, NO CHARGE for him being here OVER an hour and getting us back in business!!! WOW.
I got an email from a friend I have met through Candlelighters inviting Devin to participate in the Relay for Life on June 17th. He is so excited!!! Thanks to Brenna and her mom for thinking of him!!! Please go check out Brenna's site. She is not new to cancer, but new to caringbridge and would love to hear from you!!!
Not much other news here, so I'll leave you with some pictures. Thanks for stopping by and don't forget to sign in and let Devin know you were here.
Devin & Kara getting ready for the birthday party
Devin & Harrison, the birthday boy, outside of laser tag.
Monday, May 23, 2005
Dev is not in a good mood today. The medicines have worked a little, but not too much. He is still feeling awful and making sure those around him know it!
He did perk up yesterday morning when we got a call from Rosi and Kayla in Scotland. Our whole family was thrilled to get to talk to our favorite wee lass and her granny. Thanks for calling Rosi. Your phone call definetly put a smile on Devin's face!!
Yesterday afternoon we went to a birthday party for our neighbor, Harrison. It was at a new place called 'Boondockers'. The kids just loved it; pizza, bumper boats, go-karts and games. Devin was worn completely out when we left!! Me too. It was fun, but it was hot yesterday afternoon.
Last night he was completely out of sorts. He was not only tired, but just worn out. He slept in this morning and is complaining of hurting just about everywhere. He and Kara are watching a movie together while we await a call from the air conditioning guy. We turned our AC on for the first time last night and it isn't working........aaaghhh. Its always something.
Also waiting for a call back from the clinic to see what the next step is for Devin. Randy's got an appointment to take both dogs to the vet this afternoon. Both are due for some shots and Casey has a spot that needs checked. Poor Casey is feeling his age.
Thanks for stopping by to check on Devin. I'm going to try and post some pics from the party yesterday. Please sign the guestbook and let Dev know you were here.
Saturday, May 21, 2005
A brief update. Devin is feeling better; not great, but better. The new medicine mixed with the old twice a day has FINALLY started working. None too soon. He is still very gripey, but hopefully getting some of this out of his system will start to make him feel better.
Kara's recital was great. She did such a good job. We were able to get good seats and had a great view of both of her dances. Devin fell asleep through the recital and griped through most of the rest. Just not himself.
Kara & Devin before the recital
Kara and Devin after the show. Dad's hand is in the picture forcing Devin to smile.
Dad and Devin bought the prettiest roses for Kara. Two dozen!!! I can't think of a time I got that many roses...wow!!
Kara getting a kiss from our neighbor, Samantha, who also had a dance recital tonight.
Thanks for stopping by to check on Devin. Please leave him a message and let him know you were here.
Friday, May 20, 2005
Short update; long day.
Devin's status is unchanged. He is feeling awful and makes sure everyone around him knows it. After several hours of waiting the clinic FINALLY called me back.I was told me to get an OTC drug and give it twice a day in addition to the rx one he is taking. I never got to talk to Dr. L.. I'm not even convinced anyone ever talked to him. The place is driving me nuts!!
Kara had recital practice this afternoon. We took her there at 2:30 with the intention of watching her ballet dance, then coming back about 6:30 to catch the tap. Dev fell asleep and slept about 2 hours while we were waiting in the auditorium. That is a pretty good indication to me that he feels lousy. It was so noisy in there with the music blaring and lights flashing off and on. Not like Devin at all to be able to fall asleep like that.
I'm hoping this new medicine will get him going. He's just so miserable and irritable. Just looking at him the wrong way will get him crying. The steroids certainly aren't helping the emotions any either.
He's due to play soccer tomorrow, but I don't imagine that will happen. Maybe dad coming home l a t e tonight will perk him up a bit. He's probably getting a little tired of being around mom again all the time.
Thanks for stopping by to check on him. He loves reading your messages so please drop him a line.
Friday, May 20, 2005
~~Frustrated is too loose of a word. Devin did not sleep 'right' Wednesday night. He looked puffy and was a very loud breather. I know I'm paranoid, but to me it sounded like his airway was restricted. I kept moving him around all night because he just looked and sounded so uncomfortable.
He did not get to school yesterday. He woke up looking and feeling awful. I'm sure me messing with him all through the night didn't help his sleep at all. What do you do?? I woke him up to get Kara up to the school, then came home and made my first call into the clinic.
By early afternoon I still had not heard back from the clinic, so I made ANOTHER phone call. Dev basically laid around all morning looking and feeling awful.
Kara got out early yesterday so we loaded up to pick her up. The fight was on as soon as she got in the car. She accidentally bumped him and he is just not in a bumping mood. He is in a horrible mood.
By now he is convinced he is hungry; he is on steroids afterall. I go by Schlotskys and pick him up a pizza. We bring the stuff home and eat outside. Within minutes of being outside he is turning red...not sunburn....just red. We go back inside and FINALLY get the call we've been waiting for all day.
I explain to the phone nurse that the medicine Dr. L. had prescribed is NOT working, that Devin is looking and feeling awful, etc., etc.. She then asks me if I'd like to "keep and eye on him for another day....or did I want her to talk to Dr. L. about him?" Now in my mind I thought this was a ridiculous question. If I didn't want to know what Dr. L. wanted to do next I certainly wouldn't have bothered to call up there 3 times trying to get an answer. She just doesn't get it. So anyway...the waiting game is on AGAIN.
She NEVER called back. Devin is miserable. He just plain does NOT feel good. He rode his scooter for a bit last night and then just burst into tears. He is an emotional wreck to say the least. He had a neighbor boy come over for a bit and play some video games with him, but his heart just wasn't in it. He is miserable.
Last night he cried himself to sleep. This doesn't happen very often, thank goodness, but it just shows how awful he feels. He's still sleeping this morning. He slept good last night. I'm sure until something gets this 'stuff' out of him he isn't going to feeling 100%.
STill waiting for someone....anyone to respond from the clinic. I guess my little talk on Tuesday didn't do much good. I don't understand it. Why in the hell does one have to fight for anything to get done?? I just don't get it.
Thanks for stopping by to check on Devin. He loves reading your messages so PLEASE sign in...we'd love to know who's visiting.
Wednesday, May 18, 2005
Yesterday was busy.
I picked both kids up early from school so we could get to the clinic on time. Even with loads of traffic and plenty of crappy drivers we made it up there by 3pm...even finding a parking place without a search!! I figured we must be on a roll.
We checked into clinic and Dev says he has to wait in the hall. Too many smells in there; he gets nauseated sooo easy. After waiting for 30 minutes they do his height, weight and blood pressure. He decides the smell is gone so we now wait in the clinic. We met a young teenage girl there with ALL. She was in a wheelchair due to avascular necrosis. Her mom said she is off of all steroids because of it. This chemo stuff is scary, mean stuff.
Dev in the treatment room wearing his lucky shirt from Kayla & Rosi
About 4:15 they take Devin into the 'treatment' room. He wasn't so happy about that. They don't do treatments in there anymore, but he was wanting a room with a tv and that one doesn't have one. Julie, the child lifer, quickly found Devin a tv and got him settled in with a movie.
Dr. L. soon appeared ready to take on our concerns. He felt around on Dev's stomach and said it actually felt good. I explained to him what Dr. A. had said and he basically said, "well his scan certainly showed he had a problem". He sent Dev down to radiology to get some more films of his stomach.
Dr. L. said he never would have guessed that Dev was in such bad shape from feeling of him. His stomach/colon are full of 'old stuff' that isn't coming out. Dr. L. put Devin BACK on the same medicine that Dr. A. had taken him off of.....telling ME I was causing him to be sick by giving him that medicine. He also upped the dosage to twice a day with some results needed by tomorrow. Serious results. I stressed to Dr. L. that this is a perfect example of why I like to see ONE doctor regarding my son. Not a group of people who are too lazy to look at his chart and his scans.
Devin is looking good. I was bragging about everything he has been doing; riding his bike, his scooter and playing soccer just to name a few. Guess I shouldn't brag so much; Dr. L. increased his vincristine since he's not up to 100 nd has had a reduced dosage for the past four months. That makes me nervous to say the least.
Upstairs to the new infusion center where Devin is the only patient. He's in and out of there in a flash, getting labs drawn then the vincristine push. His port site bled and bled after they pulled out his needle. That has never happened before so I'm not quite sure what that is all about.
Dev getting the dreaded vincristine
After the clinic Kara insisted on going into the ICS Unit to see if Tiffany was working. Tiffany is her friend, Abby's mom, and also one of the nurses on the oncology unit. Devin walked around and talked to several of the nurses up there. He loves them to make comments about how great his hair is. He is looking like a wild man these days.
By 5:30 we are leaving to get something to eat. Dev has been crying for food since before we walked in the door and the two Twix he ate in the clinic aren't lasting much longer. We stepped on the elevator right on with the Dr. M from ENT.
He is such a nice guy. After he finished talking to the other mom in the elevator I told him I'd like to speak with him. He let us ride down to the basement which the kids thought was very cool (you have to have a key for that). I told him about the hateful message his nurse had left on my answering machine regarding what he had supposedly told her to tell me. He apologized and said he would speak to her and also said he would be more than happy to see Devin anytime. I told him that I knew that, I just wanted him to be aware of what had been said.
Anyway I would consider this a good clinic day. Everyone was in good moods and we finally got some answers. Hopefully having Devin back on this medicine will get him moving in the right direction. If not, we'll have to explore other options. Dr. L. seemed to think this MAY BE WHY he is throwing up every day. We will see. I hope this works.
Thanks for stopping by to check on Mr. Devin. He is off to school today and I'm really surprised I haven't heard from him yet. Of course he threw up when he got up, then got dressed, took some pain pills and went about his day. He's got some real motivation for going to school. I'm not sure what/who it is, but I'm glad he felt like he needed to go.
Please sign the guestbook and let him know you were here.
Sunday night 5-15-05
Wow...2 updates in one day. Pretty unbelievable. I've just been thinking alot as I try to get to sleep and don't want to forget anything that happened this afternoon, so I best write it down.
We went to the big Sears Grand store this afternoon. This place is huge. Randy was wanting to get a new weedeater, which wasn't too exciting for me or the kids, so we headed back to Devin's favorite department: Music. Kara and I looked at shoes while Devin checked out their great selection of CDs. While shopping I noticed a masked kid being pushed around in a cart and mentioned it to Dev. Suddenly he was on a mission.
We looked high and low for this kid...finally finding him. Devin was so excited. The kid was 4 and was just diagnoses with ALL. Sweet bald head shining with that mask covering up his beautiful face. Devin ran over to him and patted him on the head and started talking. The family spoke very broken English, but I think they could understand when Devin told the little boy he was going to be alright. I could not believe my son. He is something.
We went to another store and got Randy's weed eater and some flowers to plant in our pots out back. Its kindof funny Kara was seriously helping pick out the most beautiful flowers to plant. She is really good at that. Anyway, I found some of those cute little periwinkles...you know the vincas. I showed them to Devin and told him that was his all natural vincristine that he enjoyed so much. Such a pretty little flower...
On our way home we could see a large group of balloons making their way into the sky. Devin immediately said, "Well, it must be someone in Heaven's birthday....and by the way mom, did you hear if Melody got her balloons yet?" I told him that I hadn't heard anything yet. This of course brought up a very enlightening conversation between Devin and Kara and how birthdays are spent in Heaven. I love to listen to those two 'figure things out'.
Anyway, this week is busy. Randy's grandpa's funeral is Tuesday, Devin's chemo is Tuesday and the dance recital practices start. The kids get out early on Thursday and will be out for 3 weeks, so hopefully Devin will feel like getting out and doing something.
~~~~Tuesday~~~~
Not such an exciting day here. Randy's grandpa's funeral is early afternoon, then I'll be headed up to clinic. I'll be picking up both kids early for our trip up to PCMC. Devin is not looking forward to it, but knows its what he has to do. Only 4 more 'official' trips up there after today. I'll be so glad to be done with that place.
The kids stayed with our neighbors last night while Randy and I attended the viewing. As we were leaving Devin asked me to do him a favor...I asked him what it was. "Well, I'd like to write a note to Melody asking about those balloons and have you put it in Grandpa Young's pocket." What do you say to something like that?? I don't know. I am hoping that Melody is having lots of fun right now playing with all of the other kids right now. Devin sure has been worrying about her though.
Thanks for checking in..please sign the guestbook and let Devin know you were here. The guestbook has been split again so its loading up extra fast....
Sunday, May 15, 2005
This weekend has been busy.
Kara is into the final countdown on her dancing. Friday's she has been dancing from 5-7 for the past several weeks. Next Saturday is the recital so they've been working extra hard getting things polished up. I did get a better picture of her in the tap outfit last weekend when they had their 'professional' pics made:
I figured Kara would be completely worn out after school, playing outside and 2 hours dancing....I was wrong. We got her home from dancing and ran up to the school. They had a really cool carnival at the school Friday night with all kinds of inflatables. The kids thought it was super cool!!!! I hadn't seen Devin so excited in a long time. He had a good rest while Kara was at dance so he was feeling good and energetic for the carnival.
Saturday we started off the day by running downtown to set up a table for a Candlelighters fundraiser. We agreed to decorate a table in Devin's honor. It looked pretty cool after we got it set up. Sorry no picture...dad didn't check the picture before we left and it was horribly out of focus. The theme for Devin's 'table' was Aerosmith, so we had frames with pics of him and Steven Tyler, copies of the CDs, guitar pics and a couple of hippie busses on the table since that is his 'goal' these days.
Next, off to soccer....Devin did a GREAT job playing hard. I was surprised that he had so much energy. He had already started off the day by throwing up, running downtown and now this. He amazes me. I'd like to get to the bottom of his daily throwing up.....cancer or not, throwing up every day as a course of action is NOT normal. We are due to see Dr. L. at our appointment on Tuesday to get to the bottom of the problem.
Devin is #6
Devin & Matthew talking about 'their hair' at a soccer break.
Sorry for the delays in updating. Needless to say we have been keeping busy..enjoying this beautiful weather; plus I have been feeling horrible. Hopefully I can get a chance to go to the doctor sometime this week.
Thanks for stopping by to check on Mr. Devin. Please leave him a message and let him know you were here....
Friday, May 13, 2005
Devin got up early this morning...he PROMISED he would!!! You see he has been waiting most of this week to talk to his friend, Chris , on the instant messenger. He was checking his site last night when she came online. He WAS THRILLED. Well, actually that is an understatement. Ecstatic.
I told him he could skip his bath and 'chat'...IF he promised to get up early to get cleaned up. Sure enough he did. He's a man of his word. I feel so lucky to have him in my life. Such a sweetheart.
He so enjoys his online chats with her. This is the hippie bus co-pilot he has visions of hooking up with and driving the Caringbridge bus of Health, Hope and Happiness all around the world. He's got big plans and no driver's license...he feels extremely lucky to have Chris on his team!! Our whole family does...thanks for all the extra-special posts. You put a smile on his face with all of your cool bus postings.
My son never complains. I'm the complainer. He is so strong and faces each day with such optimism. Thank you for your posts. He loves to read to see who has visited him while he's away at school. It puts a smile on his face to see how many friends have stopped by.....and let me tell you when Devin smiles we're all smiling!!!
Thanks for the smiles and words of encouragement. Devin is away at school...just so excited to be doing 'normal' things. Today, life is good. One day at a time.
Please sign and let Dev know you stopped by....also, don't forget he has begun his fundraising for the Light the Night walk this September. Click the Link above to donate online.
Thursday, May 12, 2005
Devin made it all the way through school. When I picked him up he was starving....he hadn't eaten his lunch. Go figure.
We fed him an early dinner which has stayed down. Hopefully the trend continues.
Short update. Oncology clinic NEVER called back. The ENT clinic nurse called the house at 6:10pm and left the most hateful message I have ever heard. Ok, ok..so I've led a sheltered life, but honestly I had high hopes that this nurse was going to get something done for Devin. Basically she said that THEY WERE NOT GOING TO DEAL WITH DEVIN AND I NEEDED TO QUIT CALLING THEM AND CALL THE ONCOLOGY CLINIC.
To make a long story short I am beyond pi**ed at the entire hospital. While I know this is not a life or death situation, I also know they TREAT EVERY DAMN SITUATION like this and after close to 18 months of FIGHTING FOR EVERYTHING up there I am burned out. I keep telling myself this chemo will be done in 6 months and anybody can do anything for 6 months.
Its kindof funny early on in Dev's treatment we had some horrendous things happen. Horrible, terrible screw ups that if WE AS HIS PARENTS had not been on top of things they would have killed him happen. Not once, but several times. We had a conference with several of the higher ups in the hospital and oncology unit. At that time they were running scared and to be honest things were beginning to straighten up. I guess its past time for another 'little talk'.
I could go on and on, but honestly I am so fed up right now that I should just end it now. Only 6 more months...
Thanks for keeping tabs on Devin. I'm glad that someone cares when it is so painfully obvious that the hospital doesn't.
Thursday, May 12, 2005
Sorry for the delay in updating.
Dev woke up, had breakfast, threw it up, brushed his teeth and insisted on going to school. I DID NOT feel good about it. He said he NEEDS to go to school. Ok. He's there.
I'm worried about him. I always worry about him. He has nothing in his stomach and I can almost bet he did not eat his lunch. Something is up and no one seems to care.
I'm still waiting to hear back from either clinic. I should be an old pro at waiting by now, but honestly I feel like I am being ignored!!!!
The scariest thing about the whole situation is Devin threw up for MONTHS like this BEFORE anyone figured out he had cancer. We've had the run-around before!!! Something is not right and I'd like to know what it is.
Thanks for stopping by. I'll update after he's home.
Thursday, May 12, 2005
This will be quick. I need to get kids up in a minute.
NO real 'word' from either clinic. The ENT dr. was in surgery all day and of course our oncology clinic doesn't take anything seriously unless you're bleeding out your eyeballs. I did get a call back from oncology around 4:30. They said 2 of the 3 samples were clear....still waiting on the 3rd. The nurse DID NOT talk to a doctor. She just basically told me to dope him up on benadryl (which would knock him out) to keep him asleep and not throwing up!!! Sounds like quite a solution.
Anyway...waiting to hear what the ENT thinks this morning. Dev was feeling better yesterday afternoon. He is still running to the bathroom quite frequently, so between that and the throwing up he just doesn't feel too great. He finally asked for some mac and cheese around noon. He ate a bit and actually kept it down. That was the last food he ingested yesterday.
He asked for chicken and mushrooms for dinner, but didn't even pretend to touch it. He refused dessert as well. He says his stomach is hurting and I would imagine it does. He is drinking and I would imagine when he feels it is 'safe' he will eat something. Getting sick and running to the bathroom every time you eat is not fun for anyone.
Kara brought home a stack of homework yesterday. He jumped right on that. He misses being in school.
I know that he will be alright, but I also know that he is sick and tired of being sick and tired. I also know this is basically 'nothing' compared to the crap he's been through, but its still not any fun. I'm so glad the crappiest of days are behind him. When I think back to those beginning chemo days this seems like a walk in the park.
Thanks for stopping by to check on Devin. Please leave him a message and let him know you were here.
Wednesday, May 11, 2005
Devin woke up this morning feeling good. I was so excited to see him feeling good and getting dressed. He had his hair fixed 'just the way the wanted' and even put on cologne!!! He had big plans for the day..........
Ate a little breakfast, then began violently throwing up; again and again. Poor kid. I got him cleaned up, rounded up one of our stash of puke buckets and we took Kara to school. Once home I have made a call into the ENT and oncology clinics to try and figure out what to do next. His right cheek is droopy again today and sore to the touch. Geez.....I need some answers. It is frustrating to say the least.
Please sign in and let Devin know you were here. Thanks...
Here's the pictures from last night's balloon launch for Melody
Devin & Kara with balloons
Dad & Kara letting off balloons
Kara watching the balloons go up...
Devin letting off balloons.
The last pink balloon going up..
Kara and dad
11am...still no word from either clinic.
Tuesday, May 10, 2005
What a run, run, run day.
We spent the morning at the oncology clinic. We got Dr. A., who in my opinion, is pretty lazy. She said she couldn't see anything in his mouth, but I pointed out to her that her scope's light wasn't working either. Go figure!! Anyway, she refused to do another belly scan. She said there was NO WAY that he could be having pain from anything being built up in his stomach since he is 'going' several times a day. I reminded her that last month Dr. L. had sent him for the very same scan and it DID show old 'stuff' sitting in his stomach.
Somedays are better than others. She did order stool samples and since my kid doesn't go on demand we had to bring the stuff home with us. What fun!! He was so mad to find out he was going to have to provide samples of his work!! Aaaaghhh....tell me about it...he wasn't the one going to have to get everything together for inspection!!!
Devin had his labs drawn straight out of his arm today. I hadn't brought a needle or even emla-ed him up so that kindof took us both by surprise. He DID NOT like that at all. Its amazing how mad he was about that. After all he has been through he acted as though that was the most traumatic!! Interesting.. Labs were good. ANC was all the way to 2100. I can't remember it being that high. WBC was 3.1. All other counts were good.
Anyway, since I felt SO strongly about those swollen cheeks the dr. was nice enough to call and get us into the head of the ENT department. We waited and waited...Dev drew some pictures while we waited while I sat and read some Ladies Home Journal from before his birth...interesting to read what was cool in 1983. Where do they get these magazines??????
The ENT said the parotid was definetly enlarged. Since Dev is NOT throwing up today he feels it will go down on its own. He felt it is getting bigger due to a problem with the muscles that control it....most likely due to low counts brought on by chemotherapy. Anyway, he said unless Dev starts throwing up again that it will probably (hopefully) go down without any intervention or meds. Dev is currently on antibiotics 2 days a week anyway, so that might even take care of it.
We left the clinic in the pouring rain to pick up some buffalo chicken for Devin and retrieve Kara from a friend's house. Then back to the house for 'sample' collection, eat a little dinner...then back up to the hospital to deliver the goods. We ran into a few nurses from the ICS unit who almost didn't recognize Devin with all of his hair!! He looks good, even if he isn't feeling his best.
On the way home from the hospital tonight Devin and I picked up 4 pink and 4 purple helium balloons in honor of our friend, Melody . Today was her 8th birthday. We attached notes to the balloons before setting them off in the rain. Randy folded the notes up and covered them in saran wrap before we let them off. We sang Happy Birthday to her and even let off some fireworks. The kids thought that was very neat. Happy Birthday Melody.
Thanks for stopping by to check on Devin. He is feeling better so we'll just see how he looks in the morning. Please sign the guestbook and let him know you were here.
Tuesday, May 10, 2005
Dev was feeling better for a while last night, but rotten again this morning. Both cheeks are swollen and droopy. I've checked inside his mouth and it looks like the parotid is enlarged on both sides. He's got an appointment in a bit.
Thanks for stopping by to check on Devin.
Please sign the guestbook.
Monday, May 9, 2005
Yesterday was great....today turned to crap early this morning. Dev woke up, jumped out of bed, got dressed and was looking forward to school. The excitement was short-lived....he started throwing up over and over again. It was horrible. He was so shaky and his heart was racing. It was just awful. I hadn't seen him sick like that in a long time..thank goodness. No fever; no other symptoms so he is resting on the couch now. I'll just keep an eye on him and see what happens.
Back to Mother's Day!!
The kids were excited for me to get up and see what they had picked out for me. They had bought one of those balloon gift things that was full of Clinique Happy perfume and lotion. It was really cool. I don't want to mess it up, so I'll wait for the balloon to go down. Kara also bought me some Hello Kitty gum that we shared and both kids picked me out a beautiful new bracelet. Lots of nice things!!
Here's a picture of the kids with the balloon full of 'stuff'. Devin was not thrilled to have to take a break from his computer time to take a picture!!
Dad and the kids fixed an enormous, delicious breakfast: omelettes, bacon, pancakes and smoothies. It was so good and everyone; even Devin ate!! It was really nice and the best part was watching them all work together to clean up the kitchen afterwards!!
After our late breakfast we headed over to Randy's parents to wish his mom a Happy Mother's Day. We stayed over there and let the kids play for awhile and checked out grandpa's garden. He's got dahlias, roses and of course vegetables planted. Hopefully we'll get to see some blooms soon.
Here's a picture of our family taken at their house yesterday afternoon.
We had plans to drive over to Hill AFB to see the airplane museum after visiting Randy's parents, but Devin decided he was hungry..again, so we drove over to Red Lobster for an early dinner. We got lucky it wasn't crowded at all (off time) and we got seated right away. The food was great and the kids really seemed to enjoy themselves. They were thrilled to get to pick out carnations for mom as we were leaving the restaurant.
Next we decided to take a drive to Park City since it was getting a little late for the museum. We had to make a pit stop after allowing Dev to drink FOUR cokes at Red Lobster so decided to look around the outlet stores for a bit. Kara spotted Limited Too and it was the only store we managed to see. She LOVES that place and especially loves it when she can take her daddy there and talk him into buying her something!!! She is a tad bit spoiled!!
The kids played at the outside playground before we left PC and we ran into some friends from tumbling. Their mom is getting VERY close to having her baby so it was fun to see all the new itty bitty baby clothes she bought up there. Lots of cute stuff!!
Next we drove on over to Midway to see all of the new construction going on up there. It is unbelievable all of the new, gigantic homes they are building. On the way up the mountain we had to stop and talk to some deer on the side of the road.
While in Midway Randy decided to take us by this natural hot springs he had visited last fall while at a conference up there. It was so cool. The water stays around 90 degrees all the time and they let you scuba dive and swim there. Check out the hot pots.
Here's a picture of me and the kids inside the cave-like structure that houses the hot springs.
Next, after a stop in Heber for the kids some ice cream we head down Provo Canyon towards home. We spot more deer and even some elk on the drive home. We stopped at Vivien Park (one of the stops of the Heber Creeper) on our way home for yet another pit stop. The kids enjoyed playing on the playground there until it was getting too dark to see.
We got home late with two happy, but tired kids. It was a very fun day and I was just so glad they were both feeling good enough to enjoy it!!!
Thanks so much for stopping by to check on Devin. Hopefully his illness will be short-lived so he can get back to his happy, active life!!
Please sign the guestbook and let him know you stopped.
Saturday, May 7, 2005
Its been a busy day here. Devin had soccer this morning and its been non-stop ever since. The rain let up just long enough for the game and started promptly as we got back into the truck. Good timing!! Dev wasn't really 'in' to soccer today, but he gave it a good effort.
After soccer we went by to visit Randy's Grandpa. He is not doing well at all. He was discharged from the hospital yesterday back to the assisted living facility. He's got congestive heart failure and is having a horrible time breathing. Randy's mom and her siblings were there waiting to make arrangements with hospice when we went by to visit. He looks just horrible. I feel so sorry for him.
From one end of town to the other to get a special color and brand of tights for Kara's tap costume, then back home to get her 'made-up' for official pictures today. I hot-rolled her hair and it looked soooo good. We rush out for pictures and its pouring down rain again. Pictures were an hour behind, so the girls basically ran around the gym until it was their turn.......which, of course leads to straight hair. Oh well...she still looked like a million dollars!!! I'll have to download the pics soon. I found out I had the tap hat on backwards...the bow goes in the back!! Oh well...better to find out today than on recital day.
Randy and the kids are gone shopping. I don't envy them at all. Traffic has been horrible everywhere we've been today and I would imagine the malls are the absolute worst. It sure is nice enjoying the quiet for awhile though....they should be home with their surprises soon.
Thanks for stopping by to check on Devin. He's got lots of energy and is looking and feeling really good. He appreciates your messages, so please drop him a line and let him know you were here!!!
Happy Mother's Day!!
Friday, May 6, 2005
Another good day yesterday. Devin is feeling good and was able to go to scouts after school. It has been a nice week. A nice return to 'normalcy'.
I got a surprise call from Laura and grandma yesterday. They are heading back to Hungary today. Laura said they had had so much fun and were tired, but still weren't ready to go home. They LOVED their trip to the U.S.A.. I'm so glad we were able to meet them while they were here. We had so much fun with them!
Dev fell asleep last night before he could get a bath, so had to take one before school this morning. After he got out and dressed he looked sooo pale. I asked him if he was ok and he said yes, but it hurt to breathe. Everything else looks good; no sore throat or fever or anything. He insisted on going to school, so off he went!!
This morning I went into his classroom with him. He wore his shirt from Hungary and told the class about meeting Laura and her grandma. We took in pictures so everyone could see what they looked like. The kids were impressed with all of the stuff he took in to show. I think the favorite thing was a bag with German writing on it that was from a toy store. They all thought that was cool. They also loved looking at the cookbook.
Devin enjoyed talking to the class. He told them that he will be going to Hungary next summer to see Laura. I guess we better tell dad so he can start working on getting the time off!! Sounds like a fun trip to me. He also wants to go to Scotland and see the Miffster while we are there. He definetly has big plans. I'm so glad.
Still digging through old picture files today. So here we go:
This is Devin with his first guitar; courtesy of Santa Claus. This was our last truly innocent cancer-free Christmas 2002.
Here's a picture of Devin and Kara in December of 2002. Devin's hair doesn't look quite so curly in this picture, but it was curly even before chemo...he just insisted on keeping it cut. Kara sure looks like a baby here.
This is Christmas morning 2002
Thanks for stopping by to check on Devin. He's getting VERY excited about the up and coming Light the Night walk and is already working on his fundraising. If you'd like to donate please click the LIGHT THE NIGHT logo above. We appreciate your donations!! Please sign the guestbook.
Thursday, May 5, 2005
Happy Cinco de Mayo!!!
Devin is away at school today; feeling good. The play was good last night, but he is glad to get it done. He was one of the narrators so he just had a little speaking part...as he said, there are about 150 narrators.
Everything is good here. Dev is feeling good and looking good. Scouts today, so hopefully he'll still have energy for that after school.
Randy is just glad to be done with his test so he can spend more time with the kids. He went to tumbling and the library with Kara last night while I went to the night performance of Devin's play. It was a good day for everyone.
I've been digging through old pictures again. Here's a couple I'd like to share:
Here's Devin getting one of many blood transfusions in December of 2003. Some of the Utah Jazz players and dancers had come up to the hospital to visit with the kids. We had heard one of the girls on the radio that morning was looking for a date. She asked Devin for a date and he turned her down!!
Here's a close up pic of Dev getting blood while playing nintendo. Whoever invented that is a genius!! He spent many hours at the hospital playing it.
Here's the two cuties in their matchies jammies that Aunt Anita made them in December of 2003. Devin had a Santa hat too, but didn't want to cover up his bald head!
Thanks for stopping by to check on Devin. He enjoys reading your messages so please drop him a line.
**Quick funny....Kara was telling me this morning about all of the accidents that had happened at school yesterday. One of her little friends had a broken leg which required several hundred stitches(her words not mine)...ok..funny how I saw this kid running around the halls with an ace bandage earlier. Then another boy was using 'crotches' to walk around. He didn't even need those 'crotches' mom..his legs were fine, its his head that is messed up. She is funny. I was trying not to laugh as I told her I hoped they both started feeling better soon. She is funny.
Wednesday, May 4, 2005
Dad and the kids are out looking for record stores. Randy came home early from work to go see Devin's play this afternoon and just took the rest of the day off. Dev will be in the play again tonight at 7 and Kara has tumbling. A busy night.
Things seem to be going really well here. Almost too good. It really makes me nervous when things seem to be going so well. I don't know why I can't just relax and enjoy, but it seems like I am always just waiting for 'something' to happen.
Dev is looking and feeling good. With the new medicine he is going to bed MUCH earlier and waking up more rested. It has been nice!!! We're gradually upping his bedtime every night.
Randy is just so glad the test is over. He won't find out the results of it for several weeks, but he feels pretty good about it. The kids are convinced he passed so that sure makes him feel good.
The weather is beautiful today. Sunny and 70. I don't think it could get much better than that...the rain is due back tomorrow. None of us are looking forward to that. Its been nice having warm, rain-free days. Its so much fun to watch the kids playing outside in the sunshine.
I am overwhelmed by this day. I am so happy and so grateful to have Devin so healthy. He has been through so much and come so far. I was digging through pics earlier today and found some before and early diagnosis pictures.
Devin and Kara just weeks before cancer entered our lives
Here's a picture of Devin with Grandma Gwen at the hospital. We had to bring Devin out into the hall so he could visit with Kara due to an RSV ban at the hospital. He hated those green masks...plus he is allergic to them, so had to wear a white mask underneath.
Finally, here is a picture of Grandma with Devin and Kara when she was leaving on Sunday. His hair is long and wild...and he's enjoying every minute of it!!!
Thanks for stopping by to check on Devin. He loves reading your messages so please do drop him a line. He's started his fundraising for the LIGHT THE NIGHT walk on September 17th and any and all donations are appreciated. To donate to his team, please click the LIGHT THE NIGHT logo above. Thanks.
Tuesday, May 3, 2005
Happy Tuesday!! Yesterday was a good day and I'm hoping today is even better. Randy is taking his test today so we'll all be spending more time together soon. This test has been a major stress on him for the past several months. We are all glad it will be over today. Good Luck Randy!!!
Dev had a great day at school yesterday. He came out of school so happy and chatty. It is good to see him like that. It really makes us all happy when he is happy and feeling good.
Devin with Casey
We didn't get much rain yesterday and by the time school was out it was a nice, sunny day. The kids enjoyed playing outside and enjoying the fresh air. Of course I am always worrying. I can't help but wonder how fresh our air really is....seems everywhere we look someone is spraying their lawn with the pesticides. Scary.
Devin, Kara, Casey & Willie
I don't fully understand why people insist on spraying these chemicals into the environment. Is green grass really that important?? The main documented cause of Devin's type of cancer is OVEREXPOSURE TO PESTICIDES.........how does a 7 year old become overexposed to anything????? Think about it.
Dev and Kara got to talk to their buddy, Chris after school yesterday. I think they wore her out keeping her on the phone so long. Thanks for chatting with them Chris and good luck on your 'draining' today.
After dinner and homework the kids played outside some more. The love riding their scooters up and down the block. Some of the neighborhood kids came by and they played chalk in the driveway. Devin is quite the chalk artist drawing 'hippy art' on my driveway. He is so funny.
Kierstin, Christopher, Devin and Kara
All in all it was a good day. Dev is happy, Kara is happy and this makes mom and dad happy. All was good until I gave Dev his night meds....he was finishing up one last page of homework when he kindof zoned out on us. Kara was the first to notice. She asked him if he felt ok...he answered NO. He said he felt dizzy, so he skipped his bath and went straight to bed. I checked on him several times in the night and he was sleeping peacefully.
Today he woke up and was soon singing in the bathtub. He was feeling so good and so full of energy. Maybe the new medicine just hits him fast...I don't know. He seems good today so we'll hope he stays good. He looks GREAT.
Devin and Kara with Mothers Day stuff from scouts
Kara with her VIP collage
Thanks for stopping by to check on Mr. Devin. He appreciates your messages so please drop him a line and let you know you stopped. ***ALSO*** He is gearing up for the big Light the Night walk on September 17th and his fundraising has officially started. Click on the Leukemia Lymphoma link above if you'd like to donate to his yet unnamed team.
Monday, May 2, 2005
Devin and Kara BOTH went to school today!!! I'm so glad. Dev only made it one day last week so I was hoping to get off to a little better start this week. We did.
He has been crabbier than I can remember over this last weekend. He didn't want grandma to go and I would imagine that is part of it, but he just hasn't been himself. Hopefully getting some more rest will get him back up to par. Crabby boys and crabby moms do not mix well!
Well grandma is back in Oklahoma and before long our lives will be back to status quo. Randy takes his big test tomorrow and we will all be so glad for him to have it done. He's been spending so much time away from home studying and trying to work that we just haven't seen much of him. It will be nice to have him as part of the family again.
Its raining AGAIN here today. Kara took a poster to school today full of pictures of herself. She is the 'farmer' of the day. This is pretty much the VIP for the class. I don't fully understand why its called the farmer, but Kara assures me that is what she is. She was supposed to take a collection of something to school for show and tell so she decided at the last minute to take a bag of stuffed animals. Actually she calls them her 'babies', but they will be stuffed animals to the rest of the class. She looked so funny going into school carrying a backpack and two large sacks. They probably think she is moving in up there.
Dev was smiling when he finally got up and around this morning. I hope that means he is feeling better. He's got the cough still, but seems to be feeling better. He ate 3 bowls of cereal before school so I'd say his appetite is back. The steroids seem to make him crabby for a week, then the hunger hits the NEXT week.....kindof wierd, but I am noticing a trend.
Not much else to report here. We're going to start in full force on this fundraising for the Light the Night walk coming up in September. He does have a link on the page if you are interested in donating to his 'team'.
Thanks for stopping by to check on Devin. Please sign the guestbook and let him know you were here.
Saturday, April 30, 2005
Yesterday started off very interesting. A friend of ours who works for a local radio station called to see if I wanted to talk to John Edward on the phone. SURE I did...so he set it up.
The conversation was short and to the point. In just a matter of minutes my Papa (mom's dad), Grandma (dad's mom) and my cousin Scott came through. It was very interesting.....very interesting. I wish I could have talked to him longer, but I do believe in what he told me.
Dev stayed home again yesterday. I guess the trip just wore him out. He slept in yesterday and just took it easy all day. Kara is doing fine. She was so excited to go play with a friend yesterday after school. The other big thrill was getting her dance costumes for the upcoming recital. They are so cute!!
Kara's tap dance..."Green Eggs and Ham"
Ballet costume
I finally talked the clinic into prescribing a med to get Dev to sleep a little easier. He has had so much trouble getting to sleep since all of this started. For the past seventeen months he just can't sleep........It has been a little frustrating to say the least. Last night he got to bed a little earlier and it was so nice.
We let him sleep in this morning. He's got a wet cough now so soccer in the rain wasn't on his agenda. He's been pretty crabby all day actually, but did land up going to Fat Cats for bowling. I'm so glad he decided to go. Kara REALLY wanted to go and she wouldn't have gone without him.
He had fun once he got there, although he refused to eat ANY pizza at all. He bowled two games and got to visit some with Tuli. That is what made it fun for him. He is really excited because Tuli and his sisters are planning on going to Camp Hobe. I'm so glad that the kids will all get to go together. It should be a lot of fun.
Devin and Tuli at Fat Cats
Kara refuses NOT to get her picture made...
It was a pretty good day. Like I said, Dev has been pretty grouchy, but hopefully a good night's sleep will get him feeling better.
Thanks for stopping by to check on Mr. Devin. Please drop him a line and let him know you were here.
**SUNDAY**
Noon and Dev is still sleeping. He woke up for a second and asked me if the clownfish was online yet...I told him no, he rolled back over and went to sleep. He is funny. He doesn't want her to get one up on him posting those buses back and forth.
Last night was methotrexate so we expect him to sleep in on Sunday, but usually nothing like this. Hopefully he'll get up soon feeling like a new kid.
The sun is shining in SLC today. Hopefully the rain will leave us alone for a couple of days. Grandma is leaving tonight to go back to OK. We don't know when she'll be back. I'm hoping she'll make it for Kara's recital on the 25th. We'll see.
Some of our friends aren't feeling so well. If you could stop by and visit
Chris and Jaxon that would be great!!
Thanks for stopping by. Please sign the guestbook..
Friday, April 29, 2005
Good morning from water-logged Utah!! The rains have finally stopped for a bit, but it is definetly wet here.
This will be a short update. I've got to start getting kids up in a bit. Please stop by our friend, Jaxon's site and wish him luck on his big surgery today. This little boy has already been through so much. Thanks.
Also, our friend, Lance is not doing so well. Please visit him too. He is a little sweetie.
The kids went back to school on Wednesday. I got a call about 9:30 that the spelling bee was about to begin; my son had somehow forgot to tell me that I was invited. Anyway, my mom and I rushed up to the school and watched the bee on the tv in his room. He had no idea we were there; which was the way I wanted it. I didn't want him to get more nervous. He did very well, but did not win. He was disappointed, but there is always next year.
Kara's big performance was at 2pm on Wednesday. She was one of the cutest little old woman in a shoe you have ever seen. I put her hair up in a bun and sprayed her hair a silver/grey. She looked VERY cute and did a very good job.
Kara and Grandma after the performance
We are wiped out from the trip. It was so much fun, but it really wore Devin out. He got up yesterday, ate a little breakfast and up it came. He spent the day at home not feeling so great. When he did begin to feel better he started begging grandma to fix him some deviled eggs!! That would be the last thing I would want on an upset stomach, but it seemed to work well for him.
Devin, Kara and Laura by the elephant at Rainforest in MGM
Kara came home from school worn out and not feeling so good. I don't know if she has a little something or is just worn out. I guess I'll see in a bit how she is feeling this morning and whether school is on the agenda for either of them.
IF Dev goes to school this morning he is supposed to talk about meeting Laura. He is planning on taking in things she brought, along with pictures and telling the class about his Hungarian friend. That will be fun to listen to him.
Well, I should go see if these kids are in shape for school. Thanks for stopping by to check on Devin. I'll try and get some more pictures up later in the day. Please sign the guestbook and let Dev know you were here.
Outside of New York, New York....it was a little sunny
UPDATE: Dev is still feeling under the weather so is missing school again. Hopefully he'll start feeling better so he can do soccer tomorrow.
Wednesday, April 27, 2005
We're home!!!!
We got in later than I had hoped last night; about 8:30pm. We all had a great time!!! It was just beautiful weather and everything worked out just perfect.
We arrived in Las Vegas on Sunday evening. We were supposed to meet some cousins of my mom's, but they got the stomach flu and couldn't come to the hotel to meet us. Maybe next time. We got checked in and went wandering around. There is just so much to see in Las Vegas. You could spend weeks there and still not see it all. Just an amazing place.
The first night we spent at Caesar's Palace messing around. Devin loves the autograph/collectible type stores. Several good Aerosmith collections in there; $3000 each, so we didn't take anything home. One day...
We ate at the Cheesecake Factory and it was just delicious. WAY too much food, so we got our cheesecake to go...4 different kinds. Great stuff!! It was definetly worth the wait.
The next morning the kids were up bright and early asking when we would meet Laura. She and her grandma had a late flight so we had agreed to meet at 10am. They came down to our room and we all met. It was great. They both speak English VERY well. Grandma is not as fluent as Laura, but she does a fine job conversing. It was so nice to finally meet. Laura is one of the very first caringbridge friends we 'met' in February of 2004. I don't think she has ever missed a day checking on Devin. She is such a sweet girl....and grandma too. They are super-duper nice people!!
Laura, Devin and Kara
We exchanged gifts. Devin was thrilled to get a hippie bus complete with flowers and another smaller bus...undecorated. Both of the kids got great Hungary t-shirts that are very nice. Kara LOVES the handmade purse that they brought to her and all of the other things. So many things; cookbooks, history books.....overwhelming to say the least. Treasures...everything they gave us is a treasure...
We talked and took pictures and decided what we wanted to do together. Grandma wanted to do whatever the kids wanted AND also wanted to make sure and ride the new monorail. We took off walking and caught the monorail outside of Harrahs; after the kids got their pictures taken with a 'real Vegas showgirl'.
We got off of the monorail at MGM. MGM is so big....way too big in my opinion. I always find myself getting turned around in that place. Devin was saying he wanted buffalo chicken so we bypassed Emerils and Wolfgang Pucks and landed up at the Rainforest Cafe. I felt bad because I knew they had already eaten at one in Nashville and was hoping to introduce them to something different. The kids loved the Rainforest, of course!! We also got to get a glimpse of the lion cubs there. Cute.
All of us at the Rainforest Cafe in MGM
We walked through New York, New York on over to the Excalibar. The kids were wanting to play games with Laura and they like those games better than Circus Circus. They enjoyed playing air hockey and kindof showed Laura how the DDR game works. I kept hoping someone would show up that really knows that game, but no luck. I think she would have really liked to see that. She was amazed at all of the games to play.
The kids spent their tickets and 'bought' Laura another bracelet to add to her collection: HOPE. They also landed up with candy and stuffed dolphins. Devin said he was going to send his to someone, so we'll see what his plan is.
We headed back to the hotel for swimming. The kids were begging to go swimming with Laura. It was a bit chilly for swimming...low 70's, but they didn't care. We got them changed and headed for the beautiful pool. Dev was a little disappointed that the water slides were closed, but they all had a good time.
The pool
For dinner we decided to take Laura and Grandma out for Mexican food. I know Randy would have preferred I get a taxi and take them to Gardunos (a REAL New Mexico restaurant), but I figured that La Salsa over at Caesar's would be a little better. I wasn't sure how much spice would be too much and I knew that La Salsa has good margaritas and fajitas (one of Dev and Grandma's favorites).
Laura wanted to take the yard long margarita cups home so the 2 Grandma's and I ordered margaritas...3 different color cups so she could take them home. We had chips, tortillas,salsa, guacamole, black beans, queso, rice and all of the fajita stuff; chicken and shrimp. They really liked it!! Grandma said she really, really liked it. I told her we made stuff like that at home all the time. She said she would come to Salt Lake City and we could cook for her and she would cook for us. Sounds like a plan!!!
Eating Mexican food at Caesar's Palace
We were so happy to be able to introduce them to something 'new' that they had never tried. Grandma, especially, seemed interested in learning more about cooking over the grill. She said they do a lot of frying food where here we do more baking and grilling. I told her I would for sure try some of the recipes she gave me until we meet again.
The grandmas
Before we started out yesterday we spent some time in our hotel room with Devin and Kara giving Laura and her grandma 'tatoos'. Dev had carried his new gel pen set to Las Vegas with him just for this purpose; along with his portfolio. They just acted like they were thrilled with the tatoos. Grandma even had Devin and Kara sign their artwork that is on her arm. That really made D & K feel good. It was just good all the way around!!
Outside of the Secret Garden
Yesterday we had decided we would go to Siegfried and Roy's Secret Garden before we had to leave for Salt Lake. It was just beautiful!! The most amazing lion you have ever seen; perfectly manicured. White tigers, elephant, black panther....and of course the dolphins. I could have watched the dolphins all day, but of course we had to get checked out of the hotel and get on the road home. I would HIGHLY RECOMMEND this to anyone. I don't know why I hadn't done this before, but it is a beautiful experience.
Checking out the dolphins...
Makes you want to jump in and swim!!
We all really enjoyed hanging out and visiting with Laura and her grandma. The time went so quick!! It seemed like we barely got there when it was already time to go again. I would have loved to stay longer and visit, but it will be good for them to do exactly what they want without us too. I know they were wanting to go to some shows and that should be fun too. They were so nice to help us get our bags downstairs so we could pick up the car and leave. There were lots of hugs...and then some more hugs. It was great!!! Thank you so much Laura and grandma for coming to the U.S.. Hopefully someday we will get to come and visit you.
Outside of the Secret Garden
Saying goodbye!
Its a busy day already with the kids being back in school and spelling bee and Kara's play today. Do me a favor though, do stop by our friend, Chris site and wish her a HAPPY BIRTHDAY!!!!!!!
Thanks for stopping by to check on Mr. Devin. Please sign in and let him know you were here.
Saturday, April 23, 2005
Looks like I fell asleep before I got Friday's update posted. It was a pretty good day for the most part. I picked up the kids from school at 1:30 and Devin was hunched over. (early day on Friday) Anyway, he went on to tell me that a dad from his class was teaching P.E. and insisted that he keep doing sit ups and push ups. Before cancer 50 sit ups would have been no problem, but the day or so after he gets the vincristine he is just lucky to be up walking around.
Needless to say we took a trip to the chiropractor right after school. He couldn't believe Dev was in such bad shape. His body was almost a 'C' shape and it took quite a while to get him back in order. When we get back from Las Vegas I will have a little talk to the teacher about Devin NOT getting pushed past his limits. I don't want him to have to go to the chiro. every day.
Better news for Friday was that Devin won the 3rd grade spelling bee. He said there was also a 6th grade class that participated too, so he beat out close to 100 people!! N E A T !!!!! He is a tremendous speller!!! Always has been. Next week he will participate in the school spelling bee against the 4th, 5th and 6th grade winners. E X C I T I N G !!!
We all went to bed early last night. Devin, Randy and Kara are still hacking. I called the clinic to try and get something else for this cough, since the medicine they prescribed on Tuesday seems to be doing nothing, but they wanted to 'wait' and see what happened. I explained that we were going out of town and I didn't want him getting worse, but no help there. He's feeling pretty good...except for the cough and our weather was great yesterday.
Today has been BUSY!!!
He had his first soccer game at 8:30 this morning!!!! He hasn't played since he was diagnosed and did really well. He was disappointed that they lost, but better luck next time. His soccer uniform is really sharp looking; red and black. He looks really good in red.
~~Devin not looking so happy after losing his first game~~
After soccer we came home to find out grandma's flight was arriving a little earlier than we thought. We raced out of here to the airport and got there just when the plane was landing. Randy dropped me off and within minutes grandma was down in the baggage area. We waited and WAITED and WAITED some more....we asked where the luggage was as none of the people on the OK flight were getting bags. FINALLY after waiting for AN HOUR (with Randy and the kids circling the airport) they called out to the tarmac and found the bags!!! First time for that and hopefully the last.
The kids are thrilled to have their 'Golden Grahams' back in town. She's only been gone for a few weeks, but you'd think she had been gone forever. They've been fighting over who gets to do what with her next. They do love their grandma!!
>~~Dev, Kara and Grandma~~
We went to the Red Iguana for lunch and have just been playing around this afternoon. We've had a sunny, nice day so we've spent some time outside. Dev is mad because he can't go to his friend Chris' party. Hopefully they can meet sometime in the future.
Nothing else to tell you about here. Our friends are always in need to prayer and positive thoughts so please remember them.
Jaxon and Robin
We'll be heading for Las Vegas tomorrow to meet our friend, Laura. We'll be back Tuesday night so Kara can participate in her class play on Wednesday afternoon. Please sign the guestbook and let Devin know you stopped to check on him.
Thursday, April 21, 2005
Things are good here. Devin's been going to school and feeling pretty good. We made a trip to the chiropractor after school and got him all lined back up. For some reason he really gets shifted around after a big dose of chemo. The adjustment has him feeling like a new kid.
The kids are getting excited about our upcoming trip to Las Vegas. Grandma flies out Saturday morning after the soccer game, then on Sunday we will head out. Randy will be staying home to study for his upcoming test. I'll be sooo glad when that is behind him.
Devin came out of school this afternoon all distressed. He had lost his 'COURAGE' bracelet somewhere at school today and was really upset about it. I told him I would find another one and get it for him.....he thought for a minute and said, "well, aren't those just sold for certain people?" I told him, yeah sure....they should be anyway. I guess he thought they were just for people who had been fighting cancer or something. He is so cute when he is so innocent like that.
Here's a pic of Devin from Tuesday at the hospital's new infusion unit. The second tile from the left is one he painted last spring while at the hospital.
This is a pic from last May before the tile was fired. All of the oncology kids and families were asked to paint tiles to go into the new infusion center that just opened up on the 4th floor. Pretty neat. I didn't see mine hanging up anywhere.....hmmmmm
Anyway, no real news at our house...which is GOOD!!! The highlight of my day was getting to talk to Angel Christopher's mom, Leslie for quite awhile today. We talked and we talked and we talked some more. I can't believe I have 'known' her for so long and just now got to speak on the phone with her. Thank goodness I got my international calling plan in place this morning!!! Leslie...you were just as amazing on the phone as you are on Chris' website. Thanks!!
Please pray for our friend, Robin . She has been having some problems and had an MRI today.
Thanks for stopping by...please sign the guestbook.
Wednesday, April 20, 2005
Finally.....an update!!!
The visit with the Schleigh family was terrific. They arrived at our house a little after 5pm on Monday. As soon as they drove into Utah they were welcomed with the winds and rain, but they got here!! That was the important part.
The kids ran out to greet their rv when it pulled onto our street. They were so excited. I immediately felt like these people were old friends. I cannot adequately describe in words how glad I was to see them. We felt and still feel honored that they came to visit. They are just super nice, incredible people.
The kids were running around and playing in minutes. The Devin's got along great together and were so nice to include Kara in all that they did.
The 2 Devins and Kara
We talked and talked and talked some more. Even though our children had different types of problems, we still had an awful lot in common. We 'knew' many of the same people and thanks to Rob's great writing skills when he would talk about Melody and things she had done I could actually re-call those events and felt as though I was there. It was amazing.
Another picture of 'the other Devin....aka Devin S.' my Devin and Kara
The kids went nuts putting tatoos on each other. Devin finally found a willing canvas who was up for just about anything!!! They were funny together. At one point they were looking up spells on the internet...it was all in good fun. They all made some wishes they are hoping to come true...me too.
I was sad to see them leave, but honestly I do know that we will see them again....if not in SLC, maybe sometime in California. They are definetly the kind of people who just radiate love and kindness.
Thank you Schleigh family for letting us get to know your Angel Melody. May the happy memories of her much too short life comfort you in the days ahead.
~~~~Clinic~~~~
SSDD...figure that one out.
Its done for another 28 days. I'll have to get into that one a different day. 24 hours later we don't have labs back...and Devin started a new medicine. Don't get me started on that..
GOOD NEWS!!! Make that GREAT news!!!!
Tuli is clean!!!!!!!!!!!!! Hallelujah!!!!!!!!! I am soooooooooooooooooooooooooooooo
happy about this news. This is a long story, but it relates in a big way to our day at the clinic yesterday. Just so thrilled that Tuli is clean!!!!! Way to go Tuli!!!!
Also, here's a pic of our favorite preschool teacher, Mrs. Pam and my friend who 'introduced' us to Mrs. Pam, Sheila. Sheila has been a friend since the stone ages and had a daughter lucky enough to be in Mrs. Pam's class last year. Mrs. Pam was introduced to the world of childhood cancer and caringbridge by Sheila. Thanks Sheila and thanks Mrs. Pam for all you do!!!! Love you both!!!
Thanks for checking in on Devin. He's feeling pretty good and is away at school today. Please sign the guestbook and let him know you stopped by!!
Monday, April 18, 2005
Well, I actually couldn't believe that Devin insisted on going to school today. His reasoning? He would have to miss tomorrow. He is still hacking. I'm sure he's not alone, but I just hope he doesn't spread those germs to everyone he knows!! He is really good about covering his mouth and washing his hands, so hopefully everything will be ok.
Dev got a hippie bus in the mail late last week. He wanted me to post a picture and tell Tammy 'THANKS'!!! He loves it. He treats it as though it is a baby..carrying it around the house so lovingly.
Kara received two pink cuties...as she calls them. She LOVES stuffed animals.
They also got cute new pillowcases from their favorite preschool teacher......who is also having a birthday today. HAPPY BIRTHDAY MRS. PAM !!!!!!! Hope you have a super great day!!!
Devin and the love bus pillow case....cooooooool !!!!
Kara and the ballerina pillowcase. Pink and purple her favorite colors!!! Note...Kara is wearing her favorite jammies from her favorite little Scottish princess...Kayla!! Thanks Rosi and Kayla
The kids are super-excited. Some time today the Schleigh family will be here. They are so excited to meet the 'other Devin'. Rob and Deb we're excited to meet you guys too!!!!!
Please remember to keep our friends in your thoughts and prayers AND don't forget to sign the guestbook. Thanks
Sunday, April 17, 2005
It has been an uneventful weekend. Devin has a cold and a hacking cough. He missed his first soccer game of the season because he just felt rotten. By late afternoon he got a little bit of energy and was moving around a bit.
Yesterday was probably the nicest day we've had this year. Plenty of sunshine and very little wind. Dev was able to get out for awhile and ride his scooter. Not a lot of energy. No fevers; just not feeling his best. I hope he gets over it soon. He goes in for chemo on Tuesday and I hate to think about him getting it while he already feels icky. It makes me wish vincristine was a count dependant drug. I'm sure his counts have come down since he's been so draggy.
Not much else to report. We've just been cleaning up things around here getting ready for our big company tomorrow. The kids are so excited. They've been having an argument on what to fix for dinner. Kara wants to grill fish and Devin wants pizza. I'm thinking we'll go straight down the middle and grill chicken. We shall see. We'll have to make a trip to the grocery store afterwhile and pick up some stuff.
Thanks for checking up on Mr. Devin. He appreciates your messages so please drop him a line and let him know you stopped.
Friday, April 15, 2005
Friday!!!!
We all woke up this morning in our own beds!!! What a deal. Randy usually the only one in the house that wakes up in the same place every morning. I'm not used to getting so much uninterrupted sleep. It was nice for a change.
Dev got up early this morning. He's got a snotty nose, but other than that acts like he is feeling better. He went to school ALL day yesterday, but was wiped out when he came home. He wasn't even on the computer too much....you know he's exhausted when he doesn't have energy for the computer!!
Today he was anxious to get to school. He never would admit what he was so excited about....?? Who knows. Maybe he'll tell me when I pick him up in a bit. It was good to see him so excited to be heading out the door. Kara is ALWAYS very enthusiastic, but she is a bit more social than Devin. Always has been. They are pretty much night and day different. She rarely closes her mouth and Devin really thinks things through before he says a word.
The kids are getting super excited about Melody's family going to be here on Monday!!! Devin has been planning all types of things that he and 'the other Devin' can do. He was mad this morning to find out its supposed to be rainy, windy and chilly while they are here. I told him he'd just have to come up with a different plan. He was okay with that.
Today is our friend Micah brother Joshy's 3rd birthday. If you get a chance go by and wish him a good one.
Our friend, Chris is starting a new chemo regimen. So please keep her in your prayers as well. The latest we've heard on Kaidrie is that things look pretty good for now. That is great to hear. Its nice to hear positive news.
Please visit Jaxon and Robin's site. Robin has developed some new problems and little Jaxon is preparing for another upcoming surgery. Also, Dev's local friend, Tuli has a questionable area on his most recent scans.
Please keep these kids AND all of the others out there fighting in your thoughts and prayers. Thanks for stopping by...please sign the guestbook.
Thursday, April 14, 2005
Its Thursday already. Dev has been a little sluggish, but for the most part good. He did call me to pick him up early from school yesterday. I think he's afraid he'll have tummy troubles at school. Hopefully today will be a full day. I certainly don't mind picking him up, but I think it is much healthier for both of us for him to do his thing and me do mine.
Yesterday was horribly windy here. We were surprised to wake up this morning and still have a roof!! The front yard is full of pine needles.....and our pine tree is in the back....so some pretty severe winds. Other than that our weather has been a bit warmer. The kids are wanting to start wearing shorts, but its NOT that warm. I told them when we go to Las Vegas they can wear them....it will be nice and warm there.
No other real news here. Randy hasn't been feeling so good so we are all hoping he keeps his germs to himself. We did get our taxes in the mail today so that is our only BIG news. What a relief. I guess I should go through my stack of mail and see what else is due by the 15th. For some reason all of the medical bills from last month are showing that I owe big time. Hopefully my insurance gal will read this and give me a call.......hope you're having fun on your vacation Deedra!!
No news is good news. Status quo is good. It doesn't make for a very exciting update, but then again this is just a day in the life of a kid with cancer. Boring is actually good!!!!
Please go and visit some of Devin's friends:
Chris is heading to the doctor today to get a new course of treatment. Good luck co-pilot Chris!!
Jaxon and Robin's site Jaxon is preparing for upcoming surgery.
Collin hasn't been feeling so great.
Tuesday, April 12, 2005
Dev called me around noon to report he didn't feel good. I got to the school to pick him up and found out his stomach hurt, back hurt, arm hurt AND he had a fever; 99.8. He usually runs about 96.8 so he was definetly warmer than normal.
I took him over to the chiropractor since he was walking so 'off'. While the chiro got him squared away (he told me to just bring Dev in anytime he is in pain) I called clinic and left a message.
After 2 hours of waiting for someone in oncology to return my call I called them back. I was patched back to my favorite call nurse (NOT) Anyway I explained that Devin and a friend had been horsing around yesterday after school and Dev had hurt his arm, plus he had a fever. She said that oncology could NOT see him because it was NOT an oncology issue....and the fever wasn't high enough.
She suggested I go to Dev's pediatrician, but I didn't figure he could diagnose a broken arm if he FAILED TO DIAGNOSE a tumor in his chest. She reminded me (how she remembered this I"ll never know) that my neighbor worked for an ortho. I called Holly and we went straight over to TOSH to be seen.
We arrived at TOSH (The Orthopaedic Specialty Hospital) and were seen right away. Luckily the xrays showed Devin's arm was just fine...perfect...beautiful even!!! I was so relieved. I just had so many guilty feelings of him having the pain that I was praying that he would be ok. He just has such a high pain threshhold and the arm was swollen...so I had to be sure. (Dev broke his arm when he was five...thought he could fly....he couldn't...and we didn't go to the ER for a couple of days)
Anyway, the fever is gone. He is kindof in a grumpy mood and I'm sure feeling crappy probably made his arm feel worse. Right now he's working on his homework and just hanging out.
After we picked Kara up from school the kids played outside for a bit. The weather was super nice today so it was perfect for scooters and chalk. I took some pictures of our dogs while we were outside. Casey is 11 1/2 years old and a golden retriever mix. Willie is 2 years old and a black lab mix.
Tuesday, April 12, 2005
There's not much to report here. Our weather has turned more spring-like and none too soon. It was nice to get out after school yesterday and just play in the sunshine. After dinner we even took a walk down to the park and let the kids run off some energy....evidently not enough because neither of them wanted to go to bed last night.
Devin is back in his happy go lucky mood. He is so thrilled that Chris is back and the hippie bus contest is back up and running. He is obsessed with finding buses to post to her. It is cute the way he gets so excited when he gets 'another bus'.
This morning started out with 2 kids not wanting to get out of bed. After telling Dev he had 'mail' he ran downstairs to check his site. Thank you Chris for unknowingly helping me get Devin motivated to get out of bed in the morning!!! I know you have a positive impact on so many of the kids you visit!!! Thank YOU!!
We were late getting out of here this morning...Devin had to check his mail THEN we got stuck behind a tractor going to school. We live in the city....I figured no one would believe the kids were late for school because of a tractor in the road!!!! But it gets better.....AFTER we get to pass the tractor we get held up by a family of ducks crossing the road!!! Who would have thought?? Anyway, the kids and I had a good laugh about that.
Please say a special prayer for our buddy, Tuli. He is having scans today. Good luck Tuli. Our thoughts are with you.
Thanks for stopping by to check on Mr. Devin. Things are good. No hospital visits until the 19th...so one more week of freedom!!!!!
Please sign the guestbook and let him know you were here.
Monday, April 11, 2005
Devin is away at school this morning. He didn't act like he felt so good, but I tanked him up with some of his favorite hemp cereal, fresh banana bread and lortab and sent him on his way. He must be feeling better because he hasn't called to come home. Sometimes I just think he needs a little push to do things.
The sun is shining today. Its supposed to get a little warmer each day this week. The kids are so excited that the rain will leave us alone. Maybe we'll get industrious and get our flower pots planted. We'll see.
Devin's been in a down mood all this weekend. I think he is missing his hippie bus friend, Chris. He and Chris have been having a 'Hippie Bus war"...basically a contest to see who can find the most hippie buses to post. He has really been getting into it and I know he misses getting her emails and stuff. Hopefully she'll be home and back in the contest soon.
This time next week, Melody's family will be here visiting us. Devin is really excited to meet the 'other' Devin. It sounds like the Schleigh family is taking quite a trip visiting caringbridge families around the U.S.. We are thrilled that they will get a chance to visit us here in SLC.
Thanks for stopping by to check on Mr. Devin. He is looking and feeling good. He appreciates your messages so please drop him a line.
Sunday, April 10, 2005
Yesterday got off to a slow start. The kids and I just hung out at the house for the morning and enjoyed being lazy. In the afternoon Devin realized he had two friends with birthdays coming up that he needed to shop for right then!! We went a couple of places and came up basically empty handed. He knows EXACTLY what he wants to buy...we just need to locate it.
After shopping a bit we stopped in at Randy's office and did a pit stop. We decided it was too windy to grill, so we had Papa Murphys instead. Maybe today will be a good grilling day; the sun is out and the wind seems to have settled a bit.
Last night after dinner a friend came over with his two kids. The kids had a blast playing together. They played outside until they were frozen, then they came inside and made a humongous mess downstairs. For some reason they decided to make a 6 foot roll of pink paper into confetti and empty Kara's sock drawer for added fun. I don't know what prompted that, but it sure looks like they had a good time.
Anyway, we got the mess cleaned up and off to bed we went. Dev has his methotrexate on Saturday nights now so he slept in a little late this morning. We expect it. It just really makes him feel rotten. (10 little pills, plus the 2 6MP) He was pretty wiped out this morning and actually got up for a bit, then went back to sleep. Rigth now he is working on his homework and feeling lots better.
Looks sunshiney today, but still pretty chilly. Only 40 degrees, so definetly not snow cone weather, but still a nice day. I define nice day by NO RAIN. We are wanting our garden spot to dry up so we can get it tilled. Maybe later this week that can happen.
Thanks for stopping by to check on Devin. He's feeling pretty good and hopefully will be headed back to school tomorrow. Please leave him a message and let him know you stopped.
This is from our 'warm' day last week.
Saturday, April 9, 2005
Devin is feeling better. I figured he would by now. It just seems that since his immunity isn't that great that he can and will wear down just doing regular, normal type things. Just attending school, playing around and doing regular 'kid stuff' wears him down. Usually after just taking it easy for a day he is back up and running again.
I don't know how long after he's off of chemo (scary thought) it will take before his counts go up in the normal range. Anyone know?? Everytime I ask the drs they just scratch their heads and say they don't really know. I guess thats a good answer. I mean everyone is different, but honestly after you have had a kid diagnosed with CANCER you just feel like doctors should be able to tell you some real information. Facts.
I was really hoping that he would make it to school every day this week. We've been having a lot of short weeks anyway so I can't even remember if or when he has gone 5 days straight. No big deal I guess. I'm just glad he is doing as well as he is. Believe me, no day is taken for granted. We know full well how lucky we are to have things so calm around here.
Devin is working on his homework he missed yesterday. I know, I know...why not put it off until Sunday night. That is one BIG thing that cancer has taught me...don't put off anything. Now you see, this goes both ways...if someone comes up with a plan for something FUN to do today we are outta here. We pretty much just seem to keep busy doing something, anything....its hard to explain. I guess what I am trying to say is we try hard to take full advantage of the good days and make them count!!
Thanks for stopping by to check on Devin. He LOVES your messages, so please drop him a line and let him know you were here.
Friday, April 8, 2005
Devin had a decent day yesterday. He seemed tired when I picked him up from school, but was excited to go to scouts. He said they are working on Mother's Day gifts so he had fun there.
Kara played with Kiersten and Chris while Dev was busy at scouts. They chalked up the driveway pretty good, but its raining AGAIN today, so the pictures are history. It was such a nice day yesterday; today is rainy and chilly. A good day for sleeping in...at least thats what Devin thinks. He is still sleeping this morning.
Dev started looking a little pale yesterday evening. He's having tummy troubles again so I guess I'll keep an eye on things. No fever, just seems worn out. I had high hopes that he would make it to school every day this week, but I guess it just wasn't meant to be. It seems like anytime he has a few really good BC-type days (thats before cancer) he has a few crap days to go along with it. Just a reminder that he is still compromised. Its such a slap in the face. I hate it.
He doesn't complain. I guess he figured out long ago that it wouldn't do any good. Hopefully he'll get tanked up on sleep and feel like a new kid by later today. We have no plans. Its hard to make any real plans when you know that they probably won't happen anyway. One of these days things will be back to normal...whatever that is.
Thanks for stopping by to check on Mr. Devin. Please keep him and the other caringbridge kiddos in your thoughts and prayers.
Thursday, April 7, 2005
Another good day yesterday. I actually felt like I got something accomplished. I cleaned and cleaned all day. I got all of the Easter stuff put away, along with all of the birthday goodies. So for the moment the house looks good.
I took Devin by the chiropractor after school. He was having some back pain when I picked him up, so he is now GREAT again. He absolutely LOVES going to the chiropractor. The dr. is really fun and the kids both love joking around with him. Dev was thrilled to show him an origami frog he had made at school. The dr. and Dev always talk 'hippie bus'. Dev was telling the dr. about his new co-pilot, Chris.
He is so happy about the hippie bus tag game he and Chris have going. He was surprised when I told him how "old" Chris is....trust me, she's NOT old...but I guess old to him. I think when you are only nine years old most people, even your mom, seem old. The chiropractor and I were laughing. I guess he thinks she is more attainable if she's 18 or younger.
We came home from the chiro. and played outside for awhile. It was really nice here yesterday so we took full advantage of it. Kara even talked me into making some snow cones. First ones of the season. They landed up eating them inside. Willie kept trying to get a taste...crazy dog.
Kara's tumbling was good. She has a couple of live wires in her class, so there is never a dull moment. The teacher is so patient. I don't know if she's on drugs or just naturally that calm, but she is so good with the kids. Devin and I worked on his ABC book while we watched Kara practice. He's finally finished the rough draft. He's just got to get busy typing.
Randy got home last night. The kids are glad to have him home. He's been at a study seminar in New Jersey for the past week so its good to have him back home. He slept in this morning and took the kids to school. They think it is so neat when daddy takes them to school. Something about their dad taking them or picking them up for any reason is cool to them.
Today is supposed to be nicer than yesterday. The kids are both in short sleeves. I think our warm weather will be short-lived, another storm is moving in tomorrow.
Thanks for stopping by to check on Devin. He's looking and feeling so good. He's on a remission mission...his words not mine. He loves your messages, so please drop him a line.
Wednesday, April 6, 2005
Yesterday was another good day. We are lucky. We seem to have far more good days than bad around here. Life is good.
Spring is all around us. We've got crocus, tulips, hyacinths and daffodils in full bloom. Our creeping phlox is finally living up to its name and taking over an entire flower bed. Seems the key to getting phlox to 'creep' is to simply ignore it and let it be. All of my flower pots and beds have certainly been ignored over the past 2 summers. Hopefully this year we will get to spend more time outside digging in the dirt.
Devin's class went to the planetarium yesterday. It was so much fun to get to tag along. He really enjoyed going. After the planet 'show' we all went to a nearby park for a picnic. Yes, it was a little chilly for a picnic, but the kids didn't seem to notice. It was good to see everyone enjoying the outdoors. I'll be glad when our weather is continuously warm. We absolutely love to eat our meals outdoors. As soon as the weather warms up we eat breakfast, lunch and dinner outside.
Last night I took the kids to Dennys for dinner. Randy is too busy studying to go with us, so we were on our own. He has really been studying hard for his upcoming test. We'll all be glad when his major study days are behind him. We do this twice a year and it gets real tiring for everyone. I feel kindof like a single mom for a few months while he immerses himself in actuarial science.
Tonight is Kara's tumbling. She is so excited. Devin is not acting like he misses the karate at all. I guess it wasn't as much fun as he thought it would be. I really like these community ed. classes where you can basically 'try before you buy'. Nice and inexpensive.
Thanks for stopping by to check on Mr. Devin. He is feeling and looking so good. I personally think if you didn't know he had been through all that chemo you would never guess....its amazing. He's amazing. We are so proud of him and how far he has come. Keep the prayers coming for Devin and his friends. We need and appreciate every single one of them.
Tuesday, April 5, 2005
Devin is doing well. People are constantly commenting about his beautiful hair and that really makes him feel good. We've been staying busy and thats good too. I signed him up for soccer the other day and he's really excited about starting that soon. He's been feeling good and just enjoying life...the things that all kids should be able to do.
I've had a lot on my mind lately. I am so grateful that Devin's scans look good that I feel I am on top of the world, yet so many of our friends continue to struggle. Its hard to find the middle ground. Some days I worry I will return to my 'pre-cancer' self where I don't worry so much about others the way I have lately. I want some kind of spot in my life where I can enjoy the blessings I have, while also able to sympathize with those not doing so well. When these kids and their families hurt...I DO TOO.
I just want to remind people my reason for starting this site. Devin was diagnosed with NHL T-cell lymphoblastic lymphoma stage III on September 17, 2003. That is a day I will never forget. EVER....It was somewhere in that time frame that I realized that surely he wasn't the only person ever to be diagnosed with this....to the internet I ran. Sure enough I found Christopher's site and began corresponding with Leslie, his mom. She convinced me to open the site and finally in February of 2004 I did. I wish I had done it sooner. The support we have received has been tremendous.
Shortly after opening the site I met up with * Kayla and another friendship was formed. Jana, a girl who had finished treatment for the same exact cancer, also introduced herself to our family. * Hunter's mom also found us and we developed a close knit group of kids fighting the same exact beast.
Over the past year we have met many other caringbridge families we care about deeply. Many of them have lost their children to cancer or some other horrible disease. While many of them will spend much of their lives in the hospital or just simply fighting. Life is not fair, no one ever suggested otherwise. Its no one's fault..that is just the way it is.
I've been thinking a lot. I spent 4 hours yesterday at the eye clinic and spent quite a bit of time talking with a man who had lost vision in both eyes due to tumors. His first eye was lost at the age of 12, the other ten years later. Someone there in the waiting room asked if he was bitter. "Of course not" he answered. These are the cards I was dealt and I'm just playing them. Thats the way life is. You can sit around and moan and groan..or you can just get on with your life and make the best of it. His opinion was that everyone's life is perfect UNTIL they get that life altering experience...Mine being Devin's cancer...his, of course was total loss of vision.
Slow down. Life goes by fast enough as it is. Smell the roses, the coffee...whatever. Enjoy what you have. Do your best to be kind and considerate to others.....who knows, when that person passes you 90mph on the road maybe they are on their way to the emergency room....just be glad its not you!!
I guess what I am trying to say is TO ME...these caringbridge pages are about support. As Devin's mom I get NOTHING out of seeing his counter going up if there are no guestbook entries to match it. If you don't sign WE DON'T KNOW YOU WERE HERE and we certainly DON'T KNOW YOU ARE THINKING AND/OR PRAYING FOR OUR SON. He is not out of the woods yet (is anyone ever???) and we still want and need your prayers. Our friends need your prayers. This site is not about entertainment...its about support. Thanks.
Tuesday, April 5, 2005
For those of you wondering; things are ok here. I haven't been in much of a mood to write, but things are fine. Thanks for asking and thanks for checking on Mr. Devin. I'll try and update this afternoon.
Saturday, April 2, 2005
At long last.....the PARTY update.
Devin's take on the party:
This party was a HUGE success!! Everyone showed up and had a great time. My neighbors came, my HH nurse's son came....who is also one of my best friends. My best friend Nicholas came (and his little brother Matthew).
My cake was so, so cool. Here it is:
Here's me, Nicholas and Taylor:
Everyone had fun climbing and jumping. Here is a picture of my dad and Michael (another dad) having fun:
Here's a picture of me and my friend Morgan from school:
This picture is before the party. My mom, Kara and I checking out my cool cake.
This picture kindof shows how tall the slide is. It is the tallest slide in the whole state of Utah and I think it is even taller than my house!
My sister loved her cake too. It was pretty and pink. Here's her cake:
We both got lots of cool presents and had lots of fun. All of my friends told me it was a really cool party and I agree it was so, so cool!!!!
Devin
Speaking of parties, today our friend, Robin is turning SIX. Please go by her website and wish her a Happy Birthday!!!! She's a real cutie!!
HAPPY BIRTHDAY ROBIN
Friday, April 1, 2005
Busy day today.
This will be a short update. I didn't update yesterday because I am sick...not me myself....just sick of cancer. Our local friend, Kaidrie, is not doing well. Her MRI was not good. It makes me so mad and sad. I was in no mood to update. To make matters worse, some UNCARING, HATEFUL person has taken it upon themselves to harrass Kaidrie's family. It just makes me sick!!! Please, if you have nothing nice to say...just walk away.
Devin and Kara are just fine. Everyone here is fine. Of course we are all very upset (that is an understatement) about our friend, but other than that things are good here.
I'll update more later. I just wanted to make sure and ask you to please pray for Kaidrie. Her site is password protected now, so you'll be unable to get updates but that shouldn't stop anyone from praying for her and her sweet family.
Also....if you're surfing caringbridge sites please stop by Jaxon and Robin's site One of our favorite girls, ROBIN, is turning SIX tomorrow. Happy Birthday Cutie.
I'll update about the party later. I'm working on getting my cameras ready to roll.....we will be taking lots of pictures!!!! Just picked up the hippie bus cake and boy does it look GROOVY.
Thanks for stopping by. I"ll update after the big party.
Wednesday, March 30, 2005
Another good day here in Salt Lake City. It snowed most of the morning, but by the time I left for my haircut appointment it had stopped and the streets were clear. By 3:30 the streets and yards were pretty much clear. Both of the kids enjoyed playing in it while it lasted, but we certainly didn't have enough snow by the time they got home to make any snowman.
Kara started back in tumbling tonight. She LOVES it. Devin decided to skip karate this time and focus more on his guitar.....AND we got him signed up back in soccer yesterday!!! He is sooooooooo excited to think about starting soccer again. Me too. We'll have to get rid of this snow first.
We went and ordered cakes for the kids big party on Friday. Devin ordered a 'hippie bus' cake complete with rainbows and peace signs; while Kara ordered a traditional white cake with pink roses - very Kara. They are both really excited for the big party. It should be a fun day.
I've been working on what I will say for Devin's VIP day. I'll go in on Friday morning.....I just hope I'll be able to STOP talking. I tell you, I can think of nothing but positive things to say about Devin. He truly is a one of a kind kid...just incredible!!! I'm afraid I'll get started talking and they will have to ask me to leave...I mean afterall he is my hero boy. Anyway, thats what I've been doing today....trying to remember all of the details of his life that I want to talk/brag about.
I picked Devin up a really cool bracelet yesterday. It is kindof tye-dyed looking (swirled colors) on one of those LIVESTRONG type bracelets and it says COURAGE. I think it is perfect for Devin and would be great for all of the people fighting cancer.
Only 6 more months of chemo to go!!!! Destination: A LONG CANCER-FREE LIFE!!!!!
Thanks for stopping by to check on Dev. Please sign his guestbook and let him know you were here.
Wednesday, March 30, 2005
Dev had a great day at school yesterday. He was glad to be back among his friends. He was not thrilled with all of the homework he came lugging home. I think some of it must have been things he missed on Tuesday (chemo day)
He did bring home a poster to fill out for the VIP person of the week. He had to put in his information; favorites and such and add some pictures. He is excited because mom gets to go in on Friday and give a little (don't know how little it will be) talk all about HIM!!! He is excited about that!!!! Me too....I'm afraid I'll start talking about him and not be able to shut up!!
Anyway, we had a good night last night. Somehow we got a bottle of cream in our milk delivery so Randy and Kara made us some fresh whipped cream and chocolate pudding for dessert last night. Kara loves to 'cook', so the pudding and cream was a good project for her.
Today it is snowing like crazy. The kids are at school so I am just watching the snow accumulate and wonder when its going to stop...I mean..its supposed to be spring!!! The kids were happy it was snowing. They are hoping we get lots so they can build a snowman when they get home...we'll see.
Thanks for stopping by...please leave Devin a message.
Tuesday, March 29, 2005
I think you could easily say we are still a bit overwhelmed with our wonderful news yesterday. There is so much anticipation leading up to these big scans that it is quite a load off your back. Its just one of those things that you don't fully understand until you've been there, done that. We are so, so grateful for Devin's clean scans.
I guess I had mentally prepared myself for about anything. You have to going into something like that. I had several different scenarios of what I would need to do if we received different news. The main objective, as always, is to make sure Devin is not upset; which means keeping our emotions in check. Luckily all of the bad things I imagined might possibly happen didn't happen. We are thrilled.
Devin did great during his gallium scan. He chose to watch School of Rock and got most of it watched while being scanned. He loves that movie and we can't find our copy. Anyway, after passing out candy to the radiology folks he took a ceiling tile from the CT room down to oncology clinic to paint.
I got a little worried as we walked into the clinic....everyone and I mean EVERYONE was being overly nice and friendly. My first thought was maybe they had found Dev's webpage and read my nasty updates about them.....then of course I started fearing the worst. Luckily they were just all in good moods. Thank goodness.
We started making the phone calls telling people the good news as we walked out of the hospital. Dev said he wanted to go to lunch at Archibalds and meet his buddy Nicholas. We called Nicholas and we all met up for lunch, then went over to Nick's house for an egg hunt. (It was raining by then, so we had it indoors)
Last night we went over to Fat Cats for pizza and games. The bowling was way too busy, so we just ate and played the different games. Devin found a new one he really liked. Its a climbing wall that actually moves. It was pretty cool. You have to keep climbing or it shuts off, but on his second try he was able to climb 13 feet. He was pretty proud of himself.
Today he was anxious to get back to school. He was up and ready to go. I'm glad he is liking it so well. He's so excited the big birthday party will be on Friday afternoon, so it is fast approaching.
Thanks for stopping by to check on Mr. Devin. Please leave him a message and let him know you were here.
Monday, March 28, 2005
10:45am
Just home.....
HIS SCANS CONTINUE TO BE CLEAN!!!!!!!!!!
Thank you to everyone who has kept Devin in your prayers. We appreciate you all!!!!!!!
Off to celebrate!!!!!!
Sunday, March 27, 2005
We had a nice Easter. Dev was up early to see if the Easter bunny had been here. Sure enough he had been here, hadn't completely finished his work, but he had made a pretty good dent in our house.
Grandma kept Devin busy while dad and I finished up the bunny work. Luckily we got it all done before Kara woke up. They had great fun hunting down all of the eggs. We had eggs inside and out. They absolutely loved hunting for them. We had a few more egg hunts later in the afternoon.
This afternoon Randy needed to study for his upcoming test so my mom and I took the kids to see the Winn Dixie movie. It was really cute and Kara especially liked it. I didn't know that much about it going in except the dog smiled alot, but it was a good show. Kara already said she wants to get it on video when it comes out.
Tonight we went to Randy's parents for Easter dinner. Bud and Anita, Randy's Seattle aunt and uncle, were in town driving back from spending the winter in Arizona. It was good to see them. They are always lots of fun to be around. Bud gave Devin a golf ball from Pebble Beach golf course and he thought that was pretty neat.
Dev went to bed early tonight after getting up so early this morning. He was completely worn out. We had a busy day yesterday, then all of the egg hunts and excitement today. Last night we had a little scare with him. He and Kara were playing; wrapping each other up in blankets then jumping over each other. Anyway she landed right on his port and bruised him up pretty good. I called the on call and an hour later got a call back (she was busy with a new patient diagnosis in the ER...how horrible) Anyway, she said that Dev should be fine and unless the swelling or pain was uncontrollable that he shouldn't need to be seen for that.
Scans are tomorrow. We are on edge to say the least. Tomorrow could easily be one of the most important days in our lives and everything we know right now could change in a heartbeat. It is so stressful. I don't know if I'll get much sleep until after he gets a good report. I know no reason why he shouldn't have a clean report, but honestly cancer just doesn't have a lot of rhyme or reason to it. That is what makes it so damn scary.
Please say an extra prayer for Devin and his scan tomorrow. I'd sure like to think that the majority of this cancer nightmare is behind him. I know that my mind is racing 100 mph, but this is my little boy and I just want everything to be all right.
Thanks for stopping by. Please sign in and let Devin know you were here. I'll update tomorrow after scans.
Saturday, March 26, 2005
Happy Easter!!
Here are the new pictures we had done last week.
Devin
Kara
center>
The kids together. Devin turned nine on March 13th and Kara turned seven on March 23rd.
Saturday, March 26, 2005
The sun is shining and Devin is feeling good today. Yesterday it was snowing and windy so the sunshine is a welcome change.
Dev didn't go to the party; just wasn't feeling so good. I emla-ed him up and we arrived in clinic at 3pm. He got the same nurse from Tuesday. She was in the same great mood. She asked him if he had remembered to bring his own needle. We had. The access went quick. She went to put one of the new tegaderm dressings over it and Devin objected. She told him they had been using those for at least a year....funny thing was he got a covaderm dressing on Tuesday. She found him a covaderm and made some rude comment about how she didn't know why radiology just couldn't access these kids. I guess because SHE WAS GETTING PAID TO ACCESS THESE KIDS. Needless to say I think her poor attitude was inappropriate. That is probably the reason I didn't update yesterday...just a little mad at the entire situation.
The way I have always felt about our oncology clinic is that the majority of the personnel do NOT want to be there. But, to be honest Devin DOES NOT want to be there either!!! He is there simply because of bad luck....cancer. He did not choose to work in the medical field and certainly not the oncology unit. If they are so damn unhappy with their jobs I feel they should get a job somewhere else. Cancer is hell without the added stress of being made to feel like you are a pain in someone's a$$.
On to radiology where positive attitude is abounding. Always smiling faces, always glad to see you (or at least they act as though they are) Anyway, Dev gets his gallium and meanwhile the CT guy is passing through. He stops to talk to Devin and notices Dev is getting the gallium....that lead casing gives it away each and every time. Anyway he tells me that Dev is NOT on his schedule for CT....we always do CTs along with gallium. I ask him to call Dr. L since the receptionist dude felt Devin didn't need CTs.....why the receptionist feels he knows more than the oncologist I'll never understand.....
Anyway, Dr. L. is paged; No answer. CT calls oncology...the receptionist informs CT that Dr. L. said Dev does NOT need CTs....We're on our way down to clinic when CT says Dr. L. has called back and YES INDEED Dev needs CTs with the gallium. Talk about overstepping one's authority....the receptionist guy definetly was out of place second guessing Dev's scan schedule.
CTs are done of the neck and chest, then back down to oncology. The gal who checks kids in looks up from her magazine disgusted saying "I didn't know you were coming back today" Well, yes...needs to get de-accessed. Same nurse comes in after I've cleaned Dev up and pulls out the needle and away we go.
So.........again I say WHY do these people have to make this any harder than it already is??? The stress of just thinking of setting up scans is enough for me without the run-around BS that goes with it. Truth is I tried to set up scans BEFORE Dev's Tuesday appointment so he could be injected then and the guy receptionist was too lazy to get it done....then when I call in to see what the plan is he tells me some stupid story of how "he told me that he would set them up WHEN WE WERE IN THE CLINIC"....now why would that make any sense for Devin to make not one, BUT TWO extra trips up there???? It doesn't.
Anyway. Once again I am not thrilled with the clinic. I had called BEFORE we headed up there and expressed concern over the new medicine he is taking. We get up there and NO doc around to do any further investigation. Yes, I could have got mad, threw a fit and probably had one show up, but honestly I wasn't in the mood. For now Dev is feeling pretty good and until he is hollering or crying I'll just plan on talking to Dr. L. on Monday after scans.
Gallium is 8am. We've been assured we'll get all results BEFORE leaving the hospital. Please pray that Devin is STILL IN REMISSION. We are so looking forward to being DONE with this cancer stuff in mid September of this year. We can handle 6 more months with these people...but I don't think any more than that.
Thanks for stopping by to check on Mr. Devin. Have a great Easter weekend.
Friday, March 25, 2005
Good Friday.
Devin is sleeping in again. Yesterday was a fun day. We went out messing around just having fun. We stopped by a place called Nickelcade and played some games. This place gives tickets like Chuck E Cheese so the kids were thrilled to cash in their tickets on a fortune telling fish, 2 paper fans and a Chinese finger trap. That fish kept them busy all day reading fortunes.
Devin bought himself a little mini sword set with some of his birthday money. I don't know why he thought he needed it, but like he reminded me, "its my birthday money". Ok, ok...I just didn't quite understand the need for a sword that looked like it belonged to a Barbie doll. Kara spent some of her money on lip gloss.....a girl can never have enough lip gloss.
It rained most of yesterday and according to the weather its supposed to turn to snow today. So far just rain though...cold and wet....perfect day for hiding eggs; NOT. I'm sure this year's hunt will be indoors for Devin and Kara. Right now our back yard looks pretty much like a giant mud hole. Not much green grass out there yet.
Devin felt really good most of the day. He picked out a cute gift for his friend's party today and is excited about going to that....I'm starting to wonder if he'll get to go....he wasn't feeling so great at bedtime last night. The new med still hasn't 'kicked' in, so we'll just play it by ear.
His gallium injection is at 3pm. I told him to remind me that we would take our own needle....he has already reminded me several times. Tuesday's experience will not be forgotten any time soon. That was painful.
Monday is the BIG SCAN day. I feel sick just thinking about it. The gallium is the BIG one. It will hopefully tell us that Devin is still cancer free and in remission. Dr. L. has already agreed to give us the findings before we leave on Monday so for that I am grateful.
Thanks for stopping by to check on Mr. Devin. He enjoys your messages so please drop him a line and let him know you stopped.
**Update 1:00pm****
Devin is feeling lousy. He ate a bit of soup for lunch, but didn't feel up to the birthday party. He has clinic at 3 today so hopefully they can figure out why he feels so bad. He's been freezing and shaky. Just not a good day for him.
Thanks for stopping.
Thursday, March 24, 2005
Kara had a really good birthday yesterday. Seems like she was opening gifts off and on most of the day. She opened some before leaving for school, had a good day at school, then opened more when she got home.
Dev had a good day at school too. He handed out a couple more invitations for his party. He is getting really excited about it. He felt good until about 4pm when he all of a sudden lost all of his color. He said his legs were hurting, but before giving him any pain meds I decided to take his temp. 99.5....not quite a fever by clinic standards, but very warm for him. He usually runs about 97, so of course I got worried he was getting sick.
He opted not to go out for Kara's birthday dinner. She picked The Mayan. We hadn't been there since her birthday last year so I knew he must really feel lousy if he chose not to go. Grandma stayed home with Mr. Devin while Randy, Kara and I met Randy's parents for dinner. Kara had a good time. They sang Happy Birthday to her and she enjoyed that. Her favorite part is watching the diving show. We had a very good front row seat, but somehow managed NOT to get splashed.
After dinner we came back to the house for some of Kara's pink cake. Luckily by then Dev's attempts at a fever were gone and he was starting to feel a bit better. Grandma had made him some deviled eggs so he was thoroughly enjoying those. He LOVES deviled eggs. He enjoyed his alone time getting spoiled by grandma; PLUS he said he got a phone call from Scotland while we were gone!! Lucky boy.
This morning they are sleeping in. Kara was completely wiped out last night. Lots of excitement over turning seven years old. I still can't believe my little baby is growing up so fast.
Thanks for stopping by to check on Mr. Devin. Hopefully he will be able to rest more today and get to feeling better before we start in on any major egg hunts. We'll most likely be doing them indoors. Its still raining lots here.
Wednesday, March 23, 2005
First off: HAPPY BIRTHDAY KARA!!!! My baby is officially 7 years old today!!!! She was so excited last night she didn't want to go to sleep, then was up early this morning!!! She opened a few presents then had to go to school. What an exciting day around here. More presents and cake!!! March is a busy month at our house.
Clinic went as well as it goes I guess. Devin waited in a room for over an hour before the nurse came in to access him. I don't think our nurse was in too great of a mood. Devin always asks ALOT of questions: "Are those latex gloves?", "What size needle is that?", "Have you done this before?"...etc., etc.. Sometimes I think he knows too much for his own good.
Well anyway the nurse asked him what size needle she SHOULD use. His reply was a one inch, so she said that is what she had. I DO NOT THINK THIS WAS A ONE INCH NEEDLE!!! He screamed and he cried and he has NEVER done this before. I stood over his head and I could see the needle was NOT flush with his skin as it usually is. I'm thinking that it was a bigger one. It was painful. I've never seen him act that way...usually its just a no big deal situation.
Anyway, after the nurse left the room I picked through her garbage she had placed in the trash (yes, I know..how smart was that?) Come to find out all of the misc. crap used for prep and stuff was there....BUT the port needle package was gone. I noticed she wadded something up in her hand and took it out with her...so I can bet it was too big. Next time we'll take our own. That was a bad experience.
Dr. L. came in to examine Devin. He of course says Devin looks good. I explained all of Dev's tummy troubles to him so off we went for a stomach scan. The scan definetly showed why he was in pain. Seems the old stuff is sticking around and the new stuff is going around it...causing the pain. Dr. L. said that sometimes extended use of pain killers (Dev uses them daily) can cause this type of problem. He was prescribed some meds to try and clean him out. Hopefully this will do the trick and he will begin feeling better. If it doesn't seem to help further tests will need to be done.
Dev is also starting on prilosec instead of the prevacid. So two new meds yesterday. The vincristine was kept at the same dosage as last time due to foot flap and the fact that his liver is not metabolizing the drug. All other oral meds are still at 100%. His ANC had dropped a little to 900, WBC is 1.7. All other counts are pretty good.
The gallium scan is set for Monday at 8:00am. Dev will be injected Friday afternoon. He's not too thrilled about that. He's got a friend's birthday party on that day and he'll have to leave it early to go up to the hospital. I'm just glad he gets to go to the party. He's so excited!!
The kids are out early today for spring break and don't go back until Tuesday. They are hoping to get some Easter cookies made, go bowling and make a music video with their grandma. They have been talking about making this video for most of the past year. That should be fun.
Thanks for stopping by to check on Mr. Devin. He LOVES reading your messages, so please drop him a line.
Tuesday, March 22, 2005
First off thanks for the prayers for Nanny and grandpa. Both are still in the hospital, but doing better. Nanny insisted that my mom stay out here for Kara's birthday so as long as Nanny continues to improve my mom will stay right here. (Kara turns seven tomorrow) We are keeping our fingers crossed. Hopefully she'll be able to stay with us at least until she's scheduled to go home.
Devin and Kara went back to school yesterday after being out for three weeks (year round school). They were both really glad to be back and see their friends. They passed out birthday party invitations so now we are just waiting on RSVPs...so far we've got 5 I think. Devin is soooooo excited. I know the party will completely wear him out, but he is really looking forward to it. Kara is too, but she hasn't been as isolated as Dev has over the past year so its not as big of a deal to her.
Today is the big chemo day. I'm wondering if the vincristine dosage will be cut yet again. He seems to be doing worse (to me) on his feet than last month. It had been about 60% for a couple of months until last month when he was walking so flappy. He's been doing exercises at home, but I really think we need to make the time to see the physical therapist. Vincristine is such a mean drug. Only 7 more doses and he's done!!!!
Steroids start today!!! Yuck. Most likely by Friday Devin will be a total grouch; not to mention the swelling and cravings. I try to prepare by buying things I think he might want, but honestly it never works out. I'm sure we will be doing a MAJOR grocery store shopping spree in the near future. Having a kid on steroids can be expensive. Of course it would probably help if I could ever say NO to him...I just can't. Not that he is spoiled or anything, but he is spoiled.
Scans are STILL NOT set up. I called the clinic yesterday and got the run around...AGAIN. We are planning on CTs as well as the gallium this time. No one is looking forward to them; least of all Mr. Devin. At least no MRI is scheduled for anything. That is his absolute all-time worst. I think that noisy machine could drive anyone nuts.
I am going to talk to Dr. L. about looking into Devin's tummy troubles. He seems to be having more than his fair share of them these days. Lots of pain on a daily basis. He takes prevacid but it is just not helping anymore. Sunday night when we were having all of the chaos with finding out about Nanny he discovered fresh blood; this is not the first time. Nothing since then, but I know this is not supposed to happen.
Anyway, nothing too exciting to report here....that is good. Just chemo...that sounds funny: JUST CHEMO. Just a normal part of my son's life.
Thanks for stopping by to check on Mr. Devin. Please drop him a line and let him know you stopped. Have a great day.
Saturday, March 19, 2005
We made it over to the candy factory yesterday and picked up lots of Easter treats. We shopped around a little after that, but the kids were NOT in the mood. Neither of them like to shop unless its specifically for them.
This morning Randy and Devin left and went to some salvage yards. Devin has been wanting to go for some time and Randy figured he wouldn't be happy until he went. Randy said Devin was a little disgusted with all of the 'wrecked up old cars'. He is funny. I think all this time he had figured there were going to be rows and rows of freshly painted hippie buses for his inspection. Not.
Grandma, Kara and I went shopping while they were off doing their 'guy' stuff. We didn't buy much, but it was fun to get out and mess around a bit. While we were out Devin called to tell me about the junk yard experience. He certainly wasn't expecting what he saw. I told him, "I told you so". He didn't think that was so funny.
We found out tonight that Randy's grandpa is in the hospital with his lungs full of fluid and pneumonia. Randy and I ran by the hospital to see him, but he wasn't too interested in company so we just stayed a minute. We hadn't been home 5 minutes when the phone rang: my aunt calling from Oklahoma, my Nanny was in the ambulance on the way to the hospital. Lungs full of fluid, trouble breathing, throwing up....they are thinking she had another heart attack.
Needless to say our laid back boring day turned to crap really quick. We're thinking grandma will probably be getting an early flight out of here in the morning to be with Nanny. We're waiting on a call from OK now.
Devin is good. Stomachache, but seems pretty good. Tonight is methotrexate so yuck!!! It always gets him down.
Please pray for our family and our caringbridge friends.
**Update 3-20-05**
Nanny was put into a room about 5am this morning. She has been stabilized, but is on oxygen, IV, catheter..etc. Her BP was through the roof when the ambulance reached her. Diagnosis: Congestive heart failure and double pneumonia. My aunt said as soon as they started draining fluid she started coming around, but they were really scared that she wasn't going to pull through. She is one tough lady. For the time being my mom has talked to her and is staying put here in Utah. If things get worse she will head on out of here back to Oklahoma.
Thanks for checking in. Dev is good..working on homework right now. The kids are back to school tomorrow, then chemo on Tuesday.
Friday, March 18, 2005
Yesterday was an ok day. Devin continues to get cards and packages in the mail here at the house. He told me we need to go over and pick up his post office box mail...I'm sure he's got a stack of cards over there. The Make A Child Smile readers keep his mailbox full. He LOVES that site!!!! He and Kara have made up a song about it. It goes something like this:
(some type of rappin' sounding music)
Make a kid grin with your big ole smile
and you'll make a kid happy for a good ole while.
du du du du
They sing this over and OVER and OVER again. They are funny!! Maybe I should record it and I could put the sound on here....sounds a little technical for me, but maybe a friend out there in cyberspace could give me a few pointers.
Devin has also got cards and packages from his friends at Tumbleweed Foundation . We have met so many new friends through these sites. The people we have met are incredible!!!
Only 5 more days until Miss Kara turns seven. I can't believe it. It seems she was just born last week, but already she is half-way grown up..well not quite half-way, but you know what I mean. I have no plans of making her move out at fourteen. She's a sweetie.
Yesterday was pretty uneventful. We took grandma over to her favorite Utah Chinese restaraunt for lunch yesterday. Devin just eats rice; must save room for fortune cookie!! Anyway, he got a terrific fortune yesterday: YOU WILL HAVE A LONG AND HEALTHY LIFE!!! We all thought that was perfect for him.
He's feeling good and looking good. Seems like he starts feeling the best and we know its just about time to knock him back down again with the dreaded vincristine.
Thanks for stopping...Please drop Devin a message and let him know you were here.
******NEW PICTURES......AFTER AEROSMITH PICS**********
Wednesday...March 16, 2005
"I'm a bit behind in updating so I'll catch everyone up to date:
Randy picked up grandma from the airport early Tuesday morning while I stayed home with the kiddos. The kids were thrilled to see her..its been since Thanksgiving.
We went to lunch over at Gardner Village and walked around a bit. It was pretty chilly here yesterday so we walked fast. Today is much warmer.
Last night we just hung around the house being lazy. I think we were all too tired to do anything. Devin's friend Ireland and her mom stopped by with Devin's birthday present. He was thrilled to have them over. The kids had a good time talking and joking around. Devin keeps talking about getting together with Ireland to do something....I guess we'll see what happens.
This afternoon we took the kids over to Toys R Us and grandma let them pick out some things for their birthdays. One of the things Kara picked out is a little Singer sewing machine. I'm excited to see if the thing really works.
Tonight we met up with Parker and Tuli for Disney on Ice. We met at McD's for a kid friendly dinner before heading off to the show. This was the first time we met Mr. Parker and his family. They were all so nice. It was nice to see everyone so excited about the show. Its a long story, but this time last night we weren't so sure we were going to get our tickets. Thankfully everything worked out and we all got to meet up...kindof like our very own Utah caringbridge get together.
Kindof funny we were just getting ready to leave McD's when one of the ICS nurses, Gene, walked into the playland with his newly adopted son. Both of the boys agreed that Gene-O was one of the best nurses up there. He has changed jobs so he can spend more time with his son. So cool to see him. He thought Tuli and Devin really looked good with hair.
The show was good. All of the kids really enjoyed it and seemed to enjoy each other's company. (Monsters, Inc.) Devin really likes hanging out with Tuli. He has told me several times that Tuli is one of the only kids that he knows that 'understands'. Its always good to see him....and he's getting his hair back. I've never seen him with hair and he just looks so good and WELL!!
Tired again tonight. Kara's got a dentist appointment in the morning, but other than that we don't have any real plans. I'm hoping we can take a drive over to Peppermint Place and pick up a few things. Maybe if we're lucky the oompa loompas will be making some suckers. Now that is entertainment!!
Thanks for stopping by to check on Mr. Devin. He appreciates your messages so please take a minute and drop him a line. Also, please keep Devin and his friends in your prayers.
Angel Christopher's site
Devin and I are up late tonight...he's been surfing the web for 'hippie things'..just noticed he had signed this guestbook on a website and thought it was so cute:
Thursday 03/17/2005 2:20:37am
Name: Devin Ross
E-Mail: tiredofcancer@yahoo.com
Homepage Title:
Homepage URL: http://www.caringbridge.com/ut/devinross
Referred By: Search Engine
Location: SLC
Comments: Hi, my name is Devin.I am 9 years old and now I am really interested in hippie things.Right now I have cancer.
Even after all the heavy treatment I was on, my hair is really long.I used to be bald from all of that chemo. Right now I am really wanting to get a
hippie bus.I have a great idea for it.
I get a curved nose bus and put a vw microbus on top.Then I take the wheels off and engine out and bolt it on the bus.After that I drill a hole in the bottom of the vw then a hole through the part of the ceiling of the bus and put a rope ladder down in the bus so people can go from the bus to the vw.Finally I drill a hole through the top of the vw and put a step ladder to get to the roof and turn the luggage
rack into a lookout tower to see different sites.Well, that is going to be what the "Magic Bus Conversion" is going to be like. I hope I can get lots of hippie friends because I am going to bring all my friends in the bus.Please write me at my website www.caringbridge.com/ut/devinross.
PLEASE PRAY FOR ME AND MY FRIENDS!!!
Sincerly, Devin Ross
Monday, March 14, 2005
Well I've bugged Devin most of the day about updating his site....and I've given up, so I'll try my best to give a good account of his #9 birthday...
Devin was up around 10:30 yesterday morning for singing and gifts. He opened his gifts from the family and was thrilled that his sister got him a harmonica "just like Steven Tyler's". That was definetly a hit. The remote control airplane caught his eye, but those packages from Scotland were calling his name. He was absolutely thrilled with the football jersey sent by his favorite Scottish lass....and oh does it look sharp on him!!
On to gifts from his biggest fan in the state of Missouri. This is where he got a little sidetracked. The phone started ringing OFF THE WALL with well-wishers. We had him answering all the calls since they were for him anyway. Somehow we missed a call from Scotland and he was devastated!!! Luckily Rosi left a message and we have listened to that over and over and over and over....well, about 50 times!!!! The kids LOVE listening to Rosi talk and wish him a Happy Birthday.
So, many unopened presents were abandoned as we tried to figure out HOW we missed that call????? Who knows??? It is one of the great mysteries of life I suppose, but at least the kids have that message they can replay to their hearts content.
After much contemplating Devin decided he wanted to go to Fat Cats for bowling and pizza. No such luck...they are closed on Sunday. Chuck E Cheese would work so we started heading for the door. About this time Grandpa and Grandmother showed up with birthday greetings. After a few more birthday phone calls we all headed to Chuck E Cheese.
After pizza and games Devin was worn out. Too tired he said to open gifts...just awake enough to play a little gamecube as we prepared for his special birthday dinner. We met some friends at a local Tepinyaki restaurant (kinda like Benihana). The kids were thrilled with the cooking show. Kara said it reminded her of a real life 'Iron Chef'. (they both love that show) Anyway, we had dinner and cake to celebrate not one, but 3 birthdays. Devin, Grace (6 on the 12th) and Kara's upcoming on the 23rd. Gifts were exchanged (and opened...) and fun was had by all.
Back at the house it was getting late and a cheesecake had Devin's #9 candle calling his name. He ate a bit of it, but said he was too full...he had eaten his dinner and pizza earlier so I was not surprised. The cheesecake was not the best I've ever had, but Devin seemed pleased with it.
Devin seemed happy with his day and vowed to spend today opening more gifts. He did open one more from MO...a book about the Wright Brothers. He began reading immediately and the unopened gifts were once again set aside. Fine with me...we can just keep celebrating and celebrating and celebrating!!!!!!
Today we have been TRYING to tidy up the house...this explains the very late/or very early update. Grandma is coming in 5 1/2 hours and I have been trying to get the guest room organized. Its our 'Santa's workshop' type of room where presents get wrapped, boxes get packed, etc...so it is more often than not very messy. I don't think Grandma will mind though..she is just anxious to see her two cutie kids!!! We are anxious to see her too.
The only plans we have so far include seeing the Monsters, Inc. (Disney on Ice) show on Wednesday night. The kids are excited. We will be meeting Parker and Tuli.
Today is Jaxon and Robin's mommy's birthday!! Happy Birthday Heather!! Also, tomorrow is our favorite friend from Hungary's birthday...Happy Birthday Laura .
Thanks for stopping..please sign in and let Devin know you were here.
Sunday, March 13, 2005
Happy Birthday Devin!!!!!!
For days I have been trying to think of the appropriate words to describe Devin without people thinking I am crazy. This kid has got to be the most beautiful, loving, angelic boy I have ever known. He is the sunshine of my days. I love you Devin. I hope you enjoy your special day. Happy Birthday 9 year old. Where have the years gone?? Love, Mom
Saturday, March 12, 2005
Devin informed me today is the 'Eve of his Birthday'...I guess he is right. Tomorrow my baby boy turns 9 years old!! Hard to believe. It seems like he was just born. Time certainly is flying by.
Yesterday was a busy day. One of Randy's Kentucky friends, David, is in town for a conference and came over to our house to meet the kids and have dinner. It was fun. The weather has been really nice so Randy grilled some steaks and the kids provided the entertainment. David was quite impressed with the kids.
It was funny. David has a son who is a little older than Devin...actually is a Leap Year baby. Devin was trying to guess when his birthday was and David told him he only had one every 4 years. Kara's guess was 'Election Year'. I thought that was a pretty good guess....I guess she pays more attention that I thought.
This morning we are taking it easy. Kara has her Destination Imagination performance today at 2pm. She is looking forward to it. They are doing their version of how Jubal's Wish ends. I haven't seen it yet, so it should be interesting.
Devin has decided for tomorrow he wants a blackberry cheesecake. I'm on a mission to find a recipe that will work....oh, and it needs both strawberry sauce and chocolate sauce. No problemo. Glad he didn't wait until tomorrow to figure this out..now I'll have time to get to the store. He is a cheesecake fiend!!
Thanks for stopping by to check on Mr. Devin. Tomorrow is his big NINE year birthday, so please leave him some birthday wishes. If you've stopped to see his update of the Moab trip just look in the journal history. I'll get some new pictures posted later today. Thanks for stopping.
Friday, March 11, 2005
Hello friends. Devin here. I am home from my road trip to Moab. We came home this afternoon so my sister could go to her Destination Imagination club. She is at dancing right now so I am updating my site.
We got to Moab on Tuesday night. It is a place with lots of lizards, but I didn't quite catch any. My sister and I made up alot of songs when we were in the truck.
The first day we went hiking in Canyonlands National Park. It was fun. We had a picnic, but I didn't feel like eating. We hiked a little more and started driving back to the hotel. I started getting a headache probably because my sister kept farting in the truck. I started throwing up and throwing up. My parents were worried about me, but I was ok. My dad's truck is really clean inside now.
Yesterday we went to Arches National Park. My dad made me hike and hike and my legs were not working right. I just lost the feeling of them completely and my dad made me mad. He only gave me one piggie back ride and that was at the end. He was more into hiking than the rest of us. I just wanted to go to the hotel and swim, but mostly on the trip I really wanted to catch lizards.
I am hoping I get a lizard for my birthday since I wasn't able to catch one. I have several names picked out for a lizard. My favorite name for a lizard is Leonardo. Either that, or Earl.
My dad took us four wheeling before he would let us go and swim. It was fun. He wanted to get the truck dirty by playing in the dirt, but it was already dirty enough as it is.
This is about all I have to say for right now. Thanks for coming to check on me. Please pray for me and my friends,
Sincerely,
Devin
Tuesday, March 8, 2005
Today is better. I woke Dev up to go to the chiropractor and that always puts him in a good mood. The dr. is always kidding around with Devin and making him laugh.
This afternoon after Kara's club meeting we are heading out of town to Moab, Utah. The kids are really excited. We should be hitting right into rush hour traffic, so it should be interesting.
We went today and got the kids' birthday party set up. They will do it together at a place called Bouncin Off the Walls here in Salt Lake City. We've got them set up together on April 1st...April Fools Day!! The lady let them try the equipment out. Devin went down the slide about 5 times and is COMPLETELY WIPED OUT!! It doesn't take much to wipe him out. While I am amazed at his strength on a day to day basis, I am also alarmed at how quickly he can tire out.
Thanks for stopping by to check on Mr. Devin. We all appreciate the messages, so please drop him a line and let him know you stopped. See you on Friday....
Only 5 days until Devin turns NINE. Some people have written for Devin's mailing address for cards, here it is:
Devin
6914 S. Redwood Road
PMB #429
West Jordan, UT 84084
Thanks.
Monday, March 7, 2005
Monday again. Since the kids are off track it seems like all the days run together. The only way I know what day it really is, is by looking at Devin's pill chart. He always takes Septra along with his other drugs on Monday and Tuesday.
Devin is in a horrible mood. No, a HORRIBLE MOOD. I know a lot of it is lack of sleep and the other part...well I don't know. No fever, so as far as the clinic is concerned he is fine. I don't know why they can't take my word when I tell them something is wrong, but they prefer actual problems. Go figure.
Devin has been having a lot of trouble getting to sleep since Christopher died. This has hit him harder than anything. I try to shelter him from most of the deaths, but this one was impossible. I hate cancer. I hate it, I hate it, I hate it. If only you could see what it does to a person. Its hell.
Today we are sitting around the house waiting for something to happen. I don't know what. I always feel like we are playing some kind of damn waiting game. Waiting for symptoms, waiting for him to feel better, waiting for something. I don't know what it will take to get him in a better mood, but I hope it happens soon. I feel like I'm going crazy.
We took the kids swimming yesterday afternoon. While they were swimming everything was fine. The minute they stepped out of the pool the griping and complaining started again. Its maddening. He is just so sensitive these past few days that nothing and no one can make him happy. Aaaghhh.
This is a horrible update, but it is nothing but the truth. Hopefully things will improve this afternoon. When Devin can't sleep, I can't sleep...oh, it is a vicious cycle.
Only 6 more days until Devin turns NINE. I can't believe it!!
Sunday, March 6, 2005
Yesterday was a pretty uneventful day. Randy and Kara went shopping for Devin's birthday while Dev and I stayed home and did NOTHING. Devin and I have really been lazy this week. Just not getting much of anything done.
Kara and Randy found a couple of things they wanted for Devin. No hippie bus......we are looking hard to find a VW bus model at least....so far, so luck. Devin just keeps saying that is all he wants for his birthday. Wish us luck on that one.
The kids and I did go for a little bike ride yesterday while Randy tagged along with the dogs. Casey is fine without a leash, but Willie goes completely nuts when you let him out in the open. Poor Casey has really slowed down since Devin got sick. Hopefully we can get him out more often and get him feeling good.
Thanks for stopping by to check on Mr. Devin. He loves reading your messages so please drop him a line and let him know you were here. Also please go and visit our friends Christopher and Melody's site . They both earned their angel wings this week.
Oh, I forgot I had a cute story to share. While Randy and Kara were gone shopping yesterday Devin was getting a little antsy wanting something to do. I told him to call his buddy Taylor and see if they could play. Devin excitedly called Taylor only to find out that Taylor was on his way to his uncle's wedding. I could see the smile dissolve from Dev's face, then he had another thought and asked Taylor to come over AFTER the wedding. "Oh", was all I heard, then Dev hung up the phone. I asked him what was going on. "Well Taylor has to go to his uncle's wedding, then afterwards he has to go to the Conception before he comes home." I didn't say anything..just corrected to what I hoped he meant was the Reception....didn't want any extra questions. Kids are so funny!
Also, our buddy * Brock could use some extra prayers as he recovers from surgery.
* Savannah is also back in the hospital.
Saturday, March 5, 2005
March birthdays officially start today in our family:
HAPPY BIRTHDAY UNCLE JEFF !!!!!!!!!!!! Hope you have a great day doing things you enjoy.
Sunny here in Salt Lake today. It seems wierd that we sorta bypassed winter here in the valley and are heading into spring. I guess I shouldn't complain, but it just seems wierd.
Every morning I go outside to get the newspaper thinking that there is going to be a major front page story about the epidemic that is taking over our lives....that is the suffering and death of so many kids!!!! I know I am not the only one who feels this is a problem!!
We told the kids last night about Melody passing. They were quite upset. Kara was crying, but Devin just seemed MAD! Rightfully so. We are just losing too many friends to this cancer. This has been a hard week.
Today is Christopher's funeral. What a hard, hard day that will be for his family. I still am in shock over his death. I just thought that kid could pull through anything. What a fighter!!
We went over to our neighbor's house last night to let the kids play. Kevin's mom is very sick in the hospital and not expected to make it much longer. He just lost his dad to cancer not so long ago. What a horrible week.
I'm hoping to get the kids out of the house to do something, anything today. Devin especially is having a hard time dealing with so much sadness at once. He's having a lot of trouble sleeping and not dwelling on the 'what ifs'. Oh, how I hate cancer.
We need a break..get away from the computer for awhile....of course that doesn't stop things from happening, but at least our minds my be on something else. Please hug your kids a little tighter today. There are no guarantees in this life.
Only 8 more days until Devin's big day!!! He is getting excited about that!! Something to look forward to and plan. Eighteen days until Kara turns seven.
Thanks for stopping by. We appreciate your messages, so please sign in and let Devin know you were here.
Friday, March 4, 2005
Devin is still asleep this morning. We had an 'interesting' night last night. Since the kids are out of school we have been a bit off of schedule. Last night Devin, Kara and I were up late in Kara's room watching tv. We had actually fallen asleep before midnight when I woke up to a horrible smell. I got up and started investigating; nothing. I noticed the smoke alarms were blinking, so I knew they were working. Looked around the house and couldn't find the source....even went so far to open the dishwasher that was finishing up...nothing.
Pretty soon the smell had woke up the kids...we told Randy to get up and we got out of the house. Well, actually I did some more looking around and it seemed the smell was in the living room so I thought maybe something was amiss in the attic. I called the fire department from the driveway. They sent out 4 fire trucks; 2 from our town and 2 from the town east of us. Luckily they were in and out of our house in record time; the culprit: a butter knife with a plastic handle had fallen down and was touching the heating element. We were allowed back inside and went to bed close to 2am. Exciting!!
Hoping to get the kids pictures taken today. They both have new Easter clothes to have pictures done in...and of course its birthday month here. We always get pictures taken this month for sure. I remember last year's pictures Devin had just a covering of hair...this year...he's wild man!!!! Wanting to look like a hippie...and us just letting him enjoy having hair!!
Several people have e-mailed me about the kids' birthdays. They are both this month. Devin turns NINE on March 13th....then ten days later my baby Kara turns SEVEN. I can't believe my babies are getting so grown up!!! We are so lucky.
Devin cannot decide what he wants to do for his party this year; just too many options. Last year his choices were just so limited; neutropenic so he couldn't have a big party, plus just feeling like total sh*t most of the time. This year he just seems overwhelmed thinking that he is doing so well that ANYTHING is an option....I mean that. Swimming, bowling...jumping houses..whatever...the sky is the limit. We'll have the 'kid' party after they are back in school so he can hand out invitations to all of his classmates. In the meantime we'll have a few family parties and celebrate. With two kids birthdays this month we usually celebrate and celebrate and celebrate!!!!
Kara is thinking she wants a 'jumping house party' or a swimming party. I hope she chooses the jumping house deal. There's a place closeby that rents out a jumping house extravaganza for parties ONLY that she went to last year for our neighbor's party. She's leaning that way...I HOPE...the swimming party last year was a bit stressful.
In case you haven't heard our friend, Melody passed last night. Please go to her site and offer your condolences to this sweet family.
Also, our buddy Christopher's family could use extra prayers as they prepare to bury their fighter tomorrow. We miss you Christopher!!
And unless you've been living in a cave, just a reminder that today is Dillion's aka The Boogieman's birthday!! Happy 3rd Birthday little guy.
Thanks for stopping by to check on Mr. Devin. Hopefully he will be up soon and raring to go. He LOVES your messages, so please drop him a line and let him know you were here.
Thursday, March 3, 2005
Kara went to her club and Devin went to guitar lessons yesterday. All of that running around made things seem a bit more normal. Devin had a GREAT time at guitar lessons and the instructor says he is doing great. He's scheduled for another lesson on Monday afternoon.
Devin is doing better with dealing with Chris. He still talks about him quite a bit, but seems like he has come to terms with it. (like that is possible) We know that Chris is in a better place, but for now it just doesn't seem fair. I have never had a child's death do this to me before. I just feel like a piece of my hope is gone. I keep thinking about Leslie and wondering how she is coping throughout all of this. This has been her life, day in and day out for years. Christopher put up quite a battle against this horrible disease.
Randy seems to not be dealing so well with Chris' death. We have talked about Chris and his condition almost daily for over a year. Chris was very special to our family. He was the very first person we found who had the same diagnosis as our Devin. They seemed to have so many things similiar with the course of their treatment. It seemed that if we had any questions regarding what was going on with Devin it was Leslie...not Devin's doctors that could figure out what needed to be done. Randy says he feels like he is just going through the motions to get through the day. I, personally, have felt that way for 17 months. Cancer is so hard.
Randy talked to one of his friends last night who had lost a daughter to a brain tumor shortly after Devin was diagnosed. Randy was surprised to hear that his friend felt as though he had lost many friends after his daughter was diagnosed. Randy told me that his friend wasn't talking to some family members because they just simply didn't care enough to even call while his daughter was dying. I know the feeling. Just because people are your family...or live in the same town doesn't mean they care. Its sad, but true. We have gone weeks without so much as a phone call from many of our family members. Devin has been in and out of the hospital over the past 17 months without people even pretending to care and check on him. If you don't think that is hard to accept, think again. Like my mom always said, "you just can't make people care...either they do or they don't."
Many, many people have no tolerance for life-threatening illnesses and the uncertainty that surrounds them......no matter how well you think you know people it seems that when things get tough so many of your 'friends' disappear. I have talked to MANY, MANY caringbridge families that talked about this. Sad, but true. This is why caringbridge is so important to me. I have found people who truly understand what you are going through and are willing to help you get through the hard times.
Thanks to all of you who continue to visit Devin and leave such uplifting messages. Most of you we have never met, but trust me the time it takes you to sign in a simple HI means the world to our family. We count on YOU to help us make it through this nightmare of childhood cancer. Thanks for stopping by.
Wednesday, March 2, 2005
Today is a better day here. My head still feels clouded, but at least Devin is acting more like himself.
Devin went to the chiropractor this morning. He wasn't hurting too bad, I just thought maybe we would make weekly chiro. appointments as a type of 'preventative maintenance' therapy.
We met a friend and her baby for lunch. The kids loved getting to see Matthew and hear all of the new words he is saying. He is such a curly headed little cutie!! Just learning something new every single day. I can't believe he is getting so big.
I've got Devin signed up for guitar lessons....AGAIN. I hope I'm not jinxing him. Seems like every time I set them up that something happens. Hopefully today will be different. He goes at 3:30 and is SO EXCITED!!!
I'm still waiting to hear from Kara's school whether or not her club; Destination Imagination is meeting. Hopefully the teacher in charge will call me soon so I can figure out how I am going to get 2 kids to 2 different places at the same time.
Off to renew Casey and Willie's licenses to be dogs....we don't want the wrath of the dog catcher on us....that is the last thing we need right now.
Sunny and warmer...50ish today. A nice day. Thanks for stopping and don't forget to check by Christopher's site and offer your condolences. We miss you Chris.
Tuesday, March 1, 2005
Things are ok here.
Better than yesterday. I believe I am in denial about Christopher. I really never thought he would actually die. Sometimes I wonder if that is the only real escape from this beast.
Please visit Christopher's site and let his family know you are thinking of them.
Thanks.
Tuesday, March 1, 2005
Today has been a better day at our house. Devin is still sad, but a lot better than yesterday. I cannot imagine how Leslie is doing. I feel so bad about Christopher. I guess I am in denial. I just really thought he was invincible and would pull through. It scares the hell out of me.
We did nothing today. Nothing. I don't think our minds are working too well. Randy went to work, but I do believe his mind was elsewhere. Cancer sucks!!
I've been asked about Devin's scans. I don't have them set up. They are due this month, but so far I haven't got my nerve up to schedule them. As long as I don't have a date to dread I feel like its not so bad. I don't know. Just really don't want to think about it right now. Not that I think anything will show up, just not in the mood.
Last night was wierd. We went by the post office on our way out to dinner so I could mail some packages. Once inside I spotted a lady from behind that looked familiar. No big deal until I saw who it was....the nurse from Dr. Lei's office....this is the doctor who FAILED TO DIAGNOSE my son. She looked at me once, then twice and said "I looked familiar". I said, "well yes, don't you work for that one doctor...." "You mean Dr. Lei?....well I used to be his nurse, now I take xrays for the entire clinic." I replied..."OH, I DIDN'T KNOW YOUR OFFICE DID XRAYS....AS A MATTER OF A FACT YOUR GOOD, SMART DOCTOR ABSOLUTELY POSITIVELY REFUSED TO DO XRAYS ON MY SON.....BECAUSE HE WAS SO POSITIVE THAT HE HAD ASTHMA......WELL, HE DIDN'T HAVE ASTHMA...HE WAS DIAGNOSED WITH STAGE 3 CANCER..... " She kindof shrunk down and said "oh" and turned away. I got busy mailing packages and tried not to think about her standing next to me. I remembered how callous she had been towards Devin when day after day I took him in there seeking help. How she acted like he was some spoiled brat baby trying to get attention.......gasping for air. Before I left I looked her in the eye and she said "I just want to say sorry" I said, "well I wish Dr. Lei had the nerve to say he was sorry....do you realize he has no earthly idea how my son is doing?? Whether he is dead or alive???????" I felt horrible. So horrible I was shaking. I was so angry at myself for getting angry and at her for being part of that practice that made it seem like I was doing something wrong....what an experience.
Luckily Randy and the kids didn't witness any of this; they were out in the truck waiting for me. I'm just so mad about this cancer. I hate it. I hate it. I hate it.....................................................................................................................................................................................................................................................Thanks for stopping.
Monday, February 28, 2005
What can I say?? Christopher became an angel this morning. I feel like a piece of my heart has been ripped from my chest. I can't imagine how Leslie and the rest of his family feels. His earthly pain and suffering is over, but with it comes the pain of burying a boy who fought so hard. What a fighter Chris was!! So brave and fearless. I never personally met him, although I saw him many times in my dreams. He was always so kind. I am so sorry he is gone.
Devin doesn't know. He had trouble sleeping last night, was up early and is now back to sleep. He looks so peaceful. He says "something isn't right mom" and I know it isn't, but I can't tell him yet. He will be devastated. He had no idea how bad Chris had been these last few days. That damn cancer stealing him away. Yes, Devin will be crushed for sure.
Eight years old and knows so many that have passed on. We have met so many kids at the hospital only to have them pass. Now Chris. Chris always seemed like he could defy anything. What an amazing kid. A true fighter and a real inspiration. Devin will be scared.
Hell, we are all scared. This was certainly not the path we ever envisioned walking when our perfect boy was born. Who would?? Cancer happens to other people, but then again......we are all the other people. Sad but true. Cancer happens to anyone and everyone. NO one is immune. I hate cancer. I hate it, I hate it, I hate it.
Please pray for Christopher's family as they prepare to bury their hero. I hope he is flying free now. Free from his earthly pain he endured for so long. If anyone deserves angel wings its him. We will miss you Christopher. You will not be forgotten.
***Update 2pm***
I told Devin about an hour ago. He woke up, again and told me that 'something wasn't right'. I asked if he hurt..no...couldn't explain it. I told him about Chris. He was understandably upset. Upset isn't such a good word....maybe horrified. He just cried and cried. He told me all of the things that Chris could do now that he is free of cancer. He told me that his heart was broke and that he wanted to write Chris' mom. He did. He feels better, but is still upset. He keeps saying that Chris has been fighting for years...yes, it is true. Cancer is so damn unfair!!!! Chris fought this cancer right until the bitter end. What a warrior.
12:30
Devin and I just got back from buying that new Sponge Bob movie. Its the only thing other than Chris he wanted to talk about today. I figured if he wanted it we would wait for it to hit the shelves at midnight. He was thrilled!
Today was a hard day here. I can't imagine how Leslie is dealing. Devin has been in such a down mood all day. I couldn't talk him into getting dressed until after Randy came home from work tonight....sat around looking sad most of the day. Poor baby. I hate cancer. I've got a very pessimist attitude about it....it really seems to me that there is only one real escape from it. Horrible.
Hope you are at peace tonight Chris. I know your suffering at the hand of this beast is over. I'm so sorry it had to be this way.
Sunday, February 27, 2005
Devin has had a better day. We let him sleep in again. He's just been worn out from this last chemo.
Christopher is still fighting!!! What an amazing boy. He's been through it all and his body has just had enough. I can't imagine what he and his family have gone through....they are quite an inspiration to me.
Devin doesn't realize Chris is so bad right now. We have kept it on the hush hush. He will find out soon enough and he will be devastated. It will be hard. He has so many questions; too many questions already. I hate this is happening. I feel like somehow Devin's chances diminish with Chris' turn for the worse. I know that sounds crazy, but that is how I feel. I always felt that if Chris could make it that Devin could. This sounds horrible.
Melody is still hanging in there too. What a trooper. I just can't imagine what these people go through. So much hell only for it to end like this. Its so unfair!!
Please, please keep our friends in your prayers. Jaxon is having more problems. Poor kid just can't seem to catch a break. I'm sure there are many, many more. The suffering seems to be endless.
Thanks for stopping by.
Please leave Dev a message and let him know you were here.
Saturday, February 26, 2005
Leslie's entry tonight says Chris may not make it through the night. This makes me sick. Chris is the very first kid I met through caringbridge....before I ever set up Devin's page. His mom has been nothing short of a life raft for me during this horrible adventure through childhood cancer. Chris has the same diagnosis as Devin and that makes him extra special to me. Chris is a fighter. The kid has gone through years of chemo, radiation, bone marrow transplant only to relapse again...he is nothing short of amazing.
This cancer is such a hellious beast. I don't truly think people in the 'real world' can understand what it does. It steals your life and your loved ones right out from under you. My Papa has been gone 10 years (yesterday) due to cancer. All of us on the caringbridge know MANY kids tonight who have already passed on or are close.
Our Melody has really had a hell of a time. She was just diagnosed last March...not even a year ago!!! She has been on hospice now for some time. Her miracle never arrived. It makes me sick.
I don't understand how many people have to suffer and die before the world takes notice.....sometimes I wonder if all the cancer people died at once if someone would WAKE UP AND FIGURE OUT WHAT THE HELL IS GOING ON??????? I have nothing against helping victims of this and victims of that, but what about these suffering kids????? When is someone going to figure out WHY and DO SOMETHING ABOUT IT???????? PLEASE.
Please pray for our friends. This cannot be an easy journey for anyone.
Melody's site
Melody is on hospice
Christopher's site Chris not doing well
Devin is ok tonight. Not great, but better than so many others tonight. Thanks for stopping.
Saturday, February 26, 2005
I've been thinking a lot about yesterday. Randy and I were both really nervous going into that appointment. We knew they were planning on looking at that lower back again. (Dev had xrays/MRI of lower spine in August that showed breakdown of L3,L4,L5) We were desperately hoping that there would be no further developments...not sure that is the right word.
The good news is the xrays looked the SAME as August. That means no further breakdown OR worse, nothing NEW that shouldn't be there. While this does not answer the question WHY the pain started back up all of a sudden, it does mean that things are stable. This is VERY good news.
The doctor was unsure why Devin was having such a rough time this go around, but confident that this too shall pass. Between the drugs, physical therapy and chiropractor visits we can surely get him more comfortable. I hate it that this is happening, but things could always be worse.
He slept good last night. He's still sleeping this morning. Kara and I are practicing her tumbling...well actually I'm watching her practice her tumbling. Mom is not so limber!!
The kids are out of school now until the end of March sometime. Hopefully we can take a few road trips and have grandma come out and visit. It will be nice to have them home for awhile. The weather has been being nicer so hopefully we can spend some time outside enjoying the sunshine. We've got crocus out and hyacaniths peeking out of the ground. Spring is always exciting!!
Thanks for stopping by to check on Devin. We appreciate your concern. Please drop Devin a line and let him know you stopped.
Please pray for our friends. Chris is in real need of a miracle....
Christopher's site
Friday, February 25, 2005
It was a long day today. We didn't get out of clinic until almost 3, then I had to run and pick up Kara. Then get her ready for dancing and then run to pick up some more lovely steroids. Today and tomorrow and we'll be done with those until next time.
The clinic visit went as well as it could. They took a lot of xrays and everything still looked the same as it did back in August. They are thinking the pain is from the methotrexate/vincristine/steroid mix, but don't know why it is so bad this particular time. Again it was mentioned that we should get him in physical therapy, so starting this next week he will be.
Devin didn't really want to talk to anyone about his pain once he got up there. The doctor told him she thinks he is internalizing too many of his worries and that he should relax a bit. Hopefully since the kids are out of school for a few weeks we will be able to take some short trips. We'll see. I would like to go somewhere warm and just relax for a little while. I'm sure it would do everyone some good.
Thanks for stopping by to check on Devin. We appreciate the prayers and positive thoughts sent our way. Off to bed...we're exhausted.
Parker's site Parker is recovering from surgery
Melody's site
Melody is on hospice
Christopher's site Chris still in the hospital
Jaxon and Robin's site Both feeling lousy
Ryan's site Ryan has some growth and is starting new chemo.
Friday, February 25, 2005
Well, we avoided the emergency room. I called the clinic while Devin was sleeping yesterday (slept about 4 hours) and they said "no more lortabs", bring him in if his pain is unbearable.
He made it through the night. He is VERY grouchy and irritable. We'll blame that on the steroids and the fact that he just doesn't feel good. He overheard me talking on the phone about the 'plan' and I knew darn well that he wasn't going to mention his back. He likes to avoid the ER at all costs.
This morning he is still sleeping. He was up a few times in the night, but was able to get back to sleep pretty easy. I'll take him up to the clinic after I get Kara off to school. They want to do some more xrays of that area of his spine that was causing him so many problems a while back. It makes me nervous...to say the least.
Yesterday was exhausting. It is so hard to see my little boy suffer like this. I honestly thought this part was behind us, but looks like here we go again. Cancer is horrible.
Thanks for checking in on Mr. Devin. Please pray for him and all of his friends.
Parker's site Parker is recovering from surgery
Melody's site
Melody is on hospice
Christopher's site Chris still in the hospital
Jaxon and Robin's site Both feeling lousy
Ryan's site Ryan has some growth and is starting new chemo.
Thursday, February 24, 2005
My #1 son is just not feeling good today. He woke up earlier than normal asking for a pain pill. It didn't touch his pain, so after we took Kara to school we got a chiro. appt.
The chiro. appt. seemed to help for a little while. He was able to walk upright and look a little better. After eating lunch he was just wiped out so is napping now. He's just not feeling good.
I haven't said it yet today, so here goes: I HATE CANCER. I HATE EVERYTHING THAT IT DOES AND EVERYTHING IS DESTROYS IN ITS PATH. Ok. Done.
This maintenance picnic is still throwing us for some curves. Just when you think things are going a little better something else comes up. I can't help but wonder what else this chemo is doing to his body. Its toxic stuff.
Thanks for keeping Mr. Devin and his friends in your prayers. Please let Dev know you stopped by signing his guestbook. Thanks.
Parker's site Parker is having surgery today
Melody's site
Melody is on hospice
Christopher's site Chris still in the hospital
Jaxon and Robin's site Both feeling lousy
Ryan's site Ryan has some growth and is starting new chemo.
Thursday, February 24, 2005
Kids are still asleep so I have no idea if Devin will go to school today or not. He wasn't feeling so good yesterday; even at school he just wasnt himself. Back pain again and add steroids to the mix....not good.
The presentation with Child Life went well. He didn't get a chance to show off many of his pictures, but he did get to explain a lot of things and answer quite a few questions. His teacher was sick and they had a substitute so Julie said she would be happy to come back and do a follow up sometime. We'll see if Dev's teacher takes her up on the offer. The kids had a lot of good questions and of course many, many comments about people they knew with cancer that died. I guess that is most people's consensus about cancer; a death sentence. For way too many it is.
Like I said, Dev's back is giving him a lot of trouble. He has trouble getting to sleep, even with pain pills. He's hungry and can't quite find what tastes good; although he did eat 3 boiled eggs last night. Seems like when he really feels rotten that eggs always taste good to him.
I'll wake him up in a bit and see if he's up to school. I hope, hope, hope he is. I think mentally, if nothing else, that school is good for him. A good diversion from thinking too much about cancer.
Thanks for keeping Devin and his friends in your prayers. Please sign the guestbook and let him know you stopped.
Tuesday, February 22, 2005
According to Devin we may have set a record getting out of the clinic in 2 1/2 hours. I think he is right. I think our previous 'best' time was about 4 hours.
Clinic went well. We got a good nurse and that always helps. She came in and told me that they would do the vincristine and the blood at the same time. I told her that wouldn't work....last time I got a phone call hours later telling me his liver functions were off and they should have backed off on the vincristine. She wasn't too thrilled, but as soon as she consulted with Dr. L. it was decided mom was right.
I had a LONG, lengthy discussion with Dr. L. about just about anything and everything I could think of or had thought of in the past 28 days. We discussed the pros and cons of the PET scan versus the gallium; decided on gallium. He said lymphoma shows too many false positives on the PET. We discussed the sleep system Devin had been using and decided that the hazards of over-dosing on his oral meds could possibly be more hazardous than dealing with lowered counts. Devin's liver is already showing signs of not metabolizing these drugs. As a result his vincristine was cut back today.
Dev's ANC was 1000 today. Dr. L. would like to keep his between 750-1000. Last time he was 2000 and that was actually worrisome. 1000 seemed good, oral chemo was kept at 100%. Dr. L. wants him back in physical therapy for a very noticeable foot flap. I don't even seem to notice it unless we are up there getting evaluated...it just seems normal to me. Scans will be scheduled around our March appointment. I don't want to even start thinking about that for another three weeks or so. Scan anxiety is horrible.
While in the clinic, Julie, the child life specialist came and talked with Devin. She is planning on visiting his class tomorrow at 2:15 to talk to the class. He is really excited about this. After they talked she took us up to the new infusion center to look around. Devin and I tried to locate the tiles we had painted back last spring...not for sure, but we think we found at least a couple. We'll have to dig out some pictures from when we were painting and double check.
He felt good after clinic. He ate a little lunch and we stopped by a pawn shop to look at guitars. I know he is wanting to buy another guitar or get another one for his birthday. We shall see. I don't know where he would put it, but we'll see. I find it very hard to say NO to this kid about anything. He doesn't ask for much so if he acts like he wants something I do my best to get it.
We got home and he started feeling awful. He talked to 'Golden Grahams'(one of his many names for his Grandma Gwen) for awhile, then got off the phone and relaxed. He was really dizzy and sweaty...and a little yellow. The clinic said to keep him super-hydrated and keep a good eye on him..no problem. He seems good tonight. He's finished his homework and ready to take on school tomorrow.
Thanks for stopping by to check on Devin. Please drop him a line and let him know you stopped.
Monday, February 21, 2005
Hi. It's me, Devin here. Today I got to sleep in because there was no school. I watched Full House with Kara. It is a really good show. I like watching it.
We picked up my dad and went to lunch at Sweet Tomatoes. That place was really busy. Even though most of the time it is completely dead. I mean you don't see anyone there. We saw Kara's dancing teacher there. Some of the people who worked there didn't recognize me because last time I was there I was bald.
After lunch we met my friend Nicholas at the movies. We went to see Are We There Yet?. The movie was really goofball, but I think I would advise you to go see it. The girl in the movie is a little you know what (a brat). Those kids were really mean to him. I don't want to tell you anymore about it because if you see it it will ruin the surprise of what is going to happen.
My mom fixed pepper steak for dinner. I just ate the white rice. I think the pepper steak stinks. My sister ate some of the sauce on her rice. I ate my rice with chop sticks. I am really good at chopsticks even though I just taught myself today. I had vanilla pudding afterwards which was just a few minutes ago.
This is all I have to say for right now. I miss school tomorrow because I have to go to the hospital for chemo. I want to go see my friends at the hospital.
Please pray for me and my friends. Please sign my guestbook. Devin R.R.
Sunday, February 20, 2005
Devin here. Yesterday my friend Laura from Hungary called me right on the phone and that isn't just out of state, its completely out of the continent! In fact its right on the other side of the world. Her time is 9 hours ahead of the time here.
Today we have been really lazy' except for my dad. He has been at work all day. My mom and sister and I slept in through church. I haven't been feeling so good for the last few days. Yesterday I was so hungry that I couldn't talk very well and my stomach hurts.
Today I have been playing the Spongebob Squarepants Revenge of the Flying Dutchman game. I am getting very, very good at it.
We also watched "The Boy In The Plastic Bubble". It is a really good movie. I remember once even I had no immune system, but I didn't have to live in a bubble. The dad off of the Brady Bunch is also the dad in this movie. John Travolta from Saturday Night Fever and Grease was the bubble boy.
I think this is about all I have to say. Please pray for me and my caringbridge friends.
Devin R
Please sign my guestbook.
Saturday, February 19, 2005
Devin is hyped up this morning. He just got off the phone with Laura, his caringbridge friend from Hungary. He was so excited to talk to her and find out when they are going to meet. Her voice was so sweet. Devin, Kara and I all had a chance to talk to her. We can't wait to meet in Las Vegas on April 24th!!!!!!! Devin is so excited to tell the world about getting to meet her. He wants to update his site, so here it goes:
Devin here. I just got off the phone with Laura. Ha Ha Ha and she is about the first person I met on caringbridge! Now I will get to meet her in person in Las Vegas. I love Las Vegas. It is sooooooooo fun!! It has lights everywhere and lots and lots to do. I am feeling a lot better today and I think its because Laura called me. I was sick yesterday, but now I am feeling better.
I told Laura about my plans to get a bus and pick up my caringbridge friends from all over the world. I am going to pick up Robin and Jaxon so we can go to the Mall of America. My plan to get all over the world in a vehicle is to keep attaching other buses on to it and so it will be like a convoy. To get to the other continents I put skis on some of the tires so partly it could drive regularly and partly drive through the Arctic Ocean. The Arctic Ocean is all solid ice so I won't have any troubles about having to put my convoy on a boat.
When I pick up all of my caringbridge and other friends we will finally paint it, maybe like a hippie van. I can't stop smiling thinking about meeting Laura in Las Vegas. She said she is going to call me before my birthday and sing to me. I can't wait.
This is all I wanted to say. Have a good day. Mrs. Pam the answer is 4560. Thanks for the problem.
Please sign my guestbook and pray for all my friends.
Devin R.
Friday, February 18, 2005
***New Pictures***
I'm pretty sure that I had an update not so long ago bragging about how well things were going. Scratch that. Devin is sick. He's ok now...low grade temp, but just not himself. I don't know why, but its frustrating. Things were going so well.
He gave his Orville Wright presentation at school yesterday. At parent teacher conference, which were great for both kids, his teacher said that he did "the best job she had seen so far". Quite a compliment. She said he really enjoys getting up and doing public speaking. He does enjoy it and does a great job - this is an 'after-cancer' thing. Before cancer he just wasn't into that sort of thing.
Kids report cards were excellent. The teacher said that Devin sometimes has trouble concentrating and paying attention, but honestly I can fully relate. I find my mind wandering all the time; wondering what we can expect next. Over the past several weeks Devin has posed some VERY serious questions to me that no kid should ever ask. As you can imagine they are about things we don't talk about here; possible relapse and such. He knows way more than you would think!! It makes me mad that his innocence is being lost, but the deed is done. Its not fair!!
Today he's just not himself. He got a good night's sleep after he finally was able to fall asleep. Kara had checked out a Goosebumps video from the library that they watched last night and it really scared him. He landed up in our bed which is just really no biggie. We sure don't want him to be afraid after all the crap he's gone through.
I don't know what to think. I'll just keep a close watch on him and hope that the fever doesn't go up...I have no idea what his counts are at this moment. Its been a week and a half since he was last drawn. I'll just hope for the best. I was planning on getting some tickets to go to Oklahoma soon to visit family, but I guess I'll wait and see what transpires. Hopefully he'll perk up soon and start to feel better.
Thanks for stopping by to check on Mr. Devin. He loves reading your messages, so please drop him a line and let him know you were here.
Our friends in need of prayers:
www.caringbridge.org/ca/christophersfight Chris has the same cancer as Dev and is STILL in the hospital
www.caringbridge.com/mn/jaxon Jaxon is undergoing surgery today
www.caringbridge.com/ky/ryanbrown Ryan's last MRI showed change.
www.ourmelody.net Melody is on hospice
Thanks
Thursday, February 17, 2005
***New Pictures***
Yesterday was good. Devin enjoyed the wax museum although he did say it was tiring. The kids were very good at being still. Devin was the first one you saw when you walked in and he looked good. Randy and I went to see him and Randy's parents came too. I think Devin had more family members there than anyone. He was happy about that too.
Last night was karate and tumbling. Kara is doing really well in her class. Her balance is really good and she is starting to be able to walk on her hands. Devin enjoys karate and spending time afterwards just with dad. They went up to dad's office to play some tricks on people that work there and get ice cream. He had a good time.
He didn't get to give his oral presentation, so he is hoping to get it done today. He has really practiced and I think it will be enjoyable for the kids. I don't think he learned much from the report because he really has had an interest in the Wright Brothers for a long time, but thats ok, it is something he enjoyed doing.
Tonight are parent teacher conferences and the kids are excited about those. We got Devin's report card and he is doing really well. Kara's we havent' seen yet, but she has always been a good student.
Thanks for stopping in to check on my kids. Please drop Devin a line and let him know you were here. The guestbook has been split so it is loading really quick again. Thanks.
Wednesday, February 16, 2005
A 'normal' day. What is normal anyway?? I don't know.
The kids wake up in good moods. Kara insists she will pack 'her own lunch'....great!! Peanut butter sandwich, carrot sticks and pringles. What a combo. Devin requests the same so I make his while he is getting dressed.
One problem: Mr. Devin decides to turn on tv while getting dressed. Wayne's World 2 is on so he loses track of what he is supposed to be doing.....yells at dad that Aerosmith will be on...just doesn't know when. He is funny. He is absolutely positively obsessed with Aerosmith!!!
Anyway he gets dressed and eats and the phone rings!!! Great....a caringbridge friend!!!! So nice to finally get to talk to Kathy. We have been following David down in Florida for about a year now and finally get to talk!! It was great. Sorry I had to cut you short Kathy....had to get kids to school.
Anyway, look outside to see we are getting pounded by snow. Devin finds a bag to put his display board in so it won't get wet on the way into school. (The wax museum is today, not yesterday as I thought) So I load up Devin's poster and props into the trunk. While I'm doing this he runs to the yard and throws up and we are on our way!! Just a regular day at our house.
My new car does horrible in the snow so we slide all the way to school. (that light that says SLIP or whatever just kept coming on....how helpful) I can remember before cancer how scared I was to drive in the snow, even in my FWD car!!! Now I think the only thing that scares me is cancer and it scares the hell out of me!!!
Thanks for stopping by to check on Mr. Devin. He appreciates your messages so please drop him a line and let him know you were here!!!!!
PRAYER REQUEST:
www.caringbridge.org/ca/christophersfight
Possible new tumor ..........still in the hospital
http://www3.caringbridge.org/ut/jankini2/ Our buddy Tuli is still in the hospital recovering from surgery
www.ourmelody.com Melody is on hospice now....praying fro a peaceful transition
Thanks for stopping
Tuesday, February 15, 2005
***New pictures***
Valentine's was good. Too good. Devin's 'love bus' won an award for Most Colorful. He was quite pleased with himself.
I worked at Kara's party first. The kids were decorating valentine's boxes and had a good time. Kara gave out the LIVESTRONG bracelets attached to her valentines. The kids were well aware of what they were and acted excited to get them.
One little boy's grandma asked me where I got the idea for giving out the bracelets. Matter of a factly I told her that my son had cancer and he wanted to pass them out, and because big brother passed them out that Kara wanted to as well. She went on to tell me her own cancer story of being diagnosed 20 years ago. I tell you, I love to hear these survivor's stories....and especially from 20 years ago.
On to Devin's party. The third graders were thrilled with the bracelets. Most of the kids put them on immediately, digging them out of their boxes. This made Devin feel really good. He was just beaming seeing that sea of yellow wrists in his class.
During the card exchange I put a couple of 'special' valentines into some boxes for Devin. He said he was too nervous to do it himself so good ole mom came to the rescue. He didn't sign his name to them, but one mom came up to me this morning at drop off and got the scoop....AND dropped off 'special' valentines for Devin AND Kara. They will be thrilled!!
On the way home from school Devin talked about how much fun the party was. I told them that we needed to get home and get some potatoes in the oven to bake to go with our steaks.....LOUD GROAN....nope, they wanted pizza!! So pizza it was.
After school the kids came home and dumped their boxes. They had a ball going through the cards and seeing what kind of valentines the other kids had chosen to pass out. Devin noticed that one of his friends from way back (preschool) hadn't given him a card. He was heartbroken. I told him it was most likely an oversight and would probably get fixed up today....gosh, I hope so. He talked about it even after he was in bed last night....boy the little things like that can really hurt a person's feelings. I certainly hope it wasn't intentional.
Yesterday evening the doorbell kept ringing with neighborhood kids bringing over valentines and treats....even a friend from Challenger stopped by for a quick visit. Thanks Dominic and Isabella!! Yvette (their mom) was telling me a horrible story of how her father has been recently diagnosed with lung cancer and brain cancer. His prognosis is not good. There is just too much cancer in the world.
I'm glad the kids had a good day, but honestly it was a bit overwhelming for me. I have been so emotional lately and it seems that everything that happens makes me think too much of last year when he was so sick. I don't know what my problem is.
For about a month now I have been going back and forth to the doctor; first for an ear infection, then a sinus infection and now I just don't know why I still feel so bad....nauseaus all the time with tons of drainage. I feel bad physically so it makes me feel bad mentally. I think about all my son has gone through without complaint and feel like an absolute wimp. Never did he complain or cry. If only I could be more like him.
I'm waiting on a call from MY doctor now. In the back of my mind I know something with me is just not right (I'm talking physically again.....) I don't know. My mind automatically fears the worst. Then I wonder if maybe, just maybe I felt like this last year and was so consumed by the living hell of dealing with my baby's cancer that I didn't even realize it. I don't know. I don't know.
Thanks for stopping by to check on Mr. Devin. He is feeling and looking incredible. Everytime I look at him I just can't imagine what he has gone through. He's the cutest, strongest, smartest kid I know!!!! Here I go again..
Thanks for all of the valentine goodies for my two sweeties. Please drop Dev a message and let him know you were here.
Please check on our buddy Tuli...he just had surgery yesterday:
http://www3.caringbridge.org/ut/jankini2/
Sunday, February 13, 2005
Kara tells me that today is 'Valentine's Eve'. I don't know if that is of any significance to her...if she thinks maybe cupid will be delivering goodies or what. I think she now thinks that every day before a holiday is an 'eve'. Who knows, maybe it is.
Devin is good. We've had a good weekend and are trying to get everything ready for back to school tomorrow. The kids both have been busy signing valentines. I ordered some LIVESTRONG bracelets a while back and they finally arrived yesterday, so we stapled those to the valentines. Better than candy in my opinion!!
Devin has also been working with dad and grandpa to build a 'hippie bus' for his valentines. The 3rd graders are having a valentine box contest and Devin wanted to re-create a 'love bus' for his. He's got out the blow pens and is now decorating it. I'm sure it will look great.
Kara will do her box at school. I'll work in her class for the party then check out what is going on in Dev's class. I didn't hear anything about an official party in his class, I am just assuming they are doing one. (I hope so...they are only 3rd graders)
The rest of the weekend has been spent getting ready for Devin's wax museum book report. He has to have a typed report on Orville Wright which is his most complex book report to date. He's even had me doing some studying to make sure everything (like the bibliography) is done correctly. I'll be glad when its over!!! The actual report and was museum is Tuesday afternoon. Grandpa and Grandmother brought him over some suspenders this afternoon to wearas part of his costume. With his hat, suspenders and airplane pictures he's going to look very "Wright Brotherish".
Thanks for stopping by to check on my little valentine. He is doing good..so much better than this time last year. To think about last year this time is just mind boggling!! In and out of the hospital constantly for one thing or another. It was right around Valentine's Day last year that we opened his caringbridge site. Who could have dreamed what a gift it would be. It has saved us so many phone calls and such that I am thankful every day. Not to mention all of the great people we have met!!!!
Happy Valentines to you all. You have made our lives so much easier by coming to this site to learn about Devin. The love and friendship shown here is felt everyday. Thank you so much for being a part of our lives.
Friday, February 11, 2005
Yesterday was another good day. The kids were in good moods when I picked them up from school. Devin was excited to get to scouts. He had a good time.
After scouts we started working on homework. They both had some surprise homework from all of the days they missed. No biggie, we got it done and decided to play hide and seek. Kara loves hide and seek. She is always looking for new places in the house to hide. Well, she found a new place....
I went straight to my bedroom where I could hear her rustling around. As soon as I walked into the room I could see her head behind my headboard. She looked so cute up there. I said, "come on out Kara." One problem: she was stuck!! Not a little stuck..a lot stuck. I don't know how she managed to get back there, but she was definetly stuck.
The more she moved, the more she slid.......her shirt started coming up and before long she was sliding more down behind the bed. I started laughing so hard that she started crying. Devin saw and got worried saying "we've got to get her out of here she'll starve" I didn't think she would starve, but I was sure I couldn't move the bed alone. I had Devin call Randy, but he had already left work. Luckily he was on his way home.
When Randy got home he saw Kara and busted out laughing. This made her a little madder. He asked if I had taken her picture...I confessed that I had. Good...lets get her out of here. I held her up and he moved the bed out to free Kara. She was scraped up, but fine. We've got sandstone paint on our bedroom walls so I'm sure it was burning her little tummy. She was so mad at both of us for laughing at her. I bet she won't try that again soon.
Devin is feeling good today. I worked in his class this morning giving spelling tests, then in Kara's class getting ready for their Valentine's party. It was fun to get to work in both classes in one day.
Devin has been planning out more of his round the world trip. He's thinking there are so many kids that he'll drive to OK first and pick up grandpa's van and weld two vans together. He has really been thinking hard on this trip.
Kara stayed after school for 'Destination Imagination. She loved it. Devin went over and played with Nicholas while we waited for Kara. She's off to dancing now. She missed last week because she was sick so was excited to get back. She loves her dancing. She just loves being busy.
We're going to decorate cookies tonight. I baked a bunch of heart shaped sugar cookies last night so the kids will get them decorated after Kara gets home.
Thanks for stopping by to check on Mr. Devin. Please leave him a message and let him know you stopped.
Thursday, February 10, 2005
Devin is feeling and looking good. He loves going to karate with his dad and says he wants to go more than just once a week. I think once a week is perfect.
Today he is starting with a new scout group. Its actually the older group and he is so excited to go...mainly because he knows Stacy, the leader and because Taylor (Russ' son) will be there. I'll drop him off at her house after I pick him up from school this afternoon. He is excited.
I have a funny story about the post office yesterday. We had to go and mail a few things and were standing in the middle of a very long line. Kara and Devin were helping hold the packages and envelopes we were planning to mail, kindof horsing around. Kara gave Dev a big hug around the back of his neck and evidently felt his port. It kindof startled her and she asked if she could see 'his thing'. The whole place fell silent. I know I was bright red, the guy behind us was laughing....THEN, Devin says in a LOUD voice: Well, I do have a thing...the hospital put this THING in me and its called a port. He had no idea that they thought the thing was anything else....thank goodness he missed that. Anyway, it was pretty funny. I've never seen a roomful of people become so silent, so fast.
When we got up to the window to mail our stuff and pick up a package the lady handed D and K a very large package and said, WOW..someone must love you guys alot!!!!!! Devin said, "yes...I have friends all over the world and I'm going to buy me a hippie bus and drive around and see them". I bet everyone there thought we were crazy, but who knows maybe they are right.
These kids are hilarious. I don't know what I would do without them. Thanks for checking in on Dev. He loves your messages, so please drop him a line and let him know you stopped.
Please remember Devin and all of our friends in your prayers.
Wednesday, February 9, 2005
I hope I'm not bragging too soon, but I feel like I have entered the simple life. You know where you don't take your kid's temperature before they get out of bed, don't have to keep such close track of meds and just all in all have a little time on your hands?? Life is good.
Devin didn't want to wake up this morning, but is feeling and looking good. Kara was up and ready long before he ever rolled out of bed. They were both anxious to get to school. They were both talking about what they were going to do at recess in the snow.
Devin is in serious need of a haircut. He doesn't want one, but his hair is so thick and getting so long that I'm about to abandon the hair brush and just use a rake on his head. I feel like I did when he was 2 years old....like I just can't get his haircut. Afterall he was without hair for over a year....can't we just enjoy it?? It is beautiful..so soft and full of life. He had good hair BC, but this new hair is just gorgeous!!
The kids are excited about tonight: tumbling for Kara and karate for dad and Devin. I'm the designated 'watcher'. Devin said maybe I should find something 'to do', but believe me, I've got plenty to do. He is so funny. Always making sure that his mom is happy. He is such a good boy.
Thanks for stopping by to check on Devin. Please leave him a message and let him know you stopped. He enjoys reading your messages from all over the world!!! He has a plan as of the past week or so for he and Kara to buy a 'hippie bus' and drive it all over the world to see all of his internet friends. One of their first stops will be the Mall of America because Mary Kate and Ashley made it look so great in one of their videos. These kids are so funny.
Please keep our friends in your prayers:
www.ourmelody.net Melody on hospice
www.caringbridge.org/ca/christophersfight Chris still in the hospital
www.caringbridge.com/md/lance Lance still in hospital
www.caringbridge.com/hi/kayla The cutest girl with NHL that I know
www.caringbridge.com/mn/jaxon Robin and Jaxon are both sick right now
www.ourboogieman.com Dillion is still sick and big sis Karen is celebrating her 4th birthday today!!
http://www3.caringbridge.org/ut/jankini2/ Tuli and family are home from GKTW...go check out his great pictures
Tuesday, February 8, 2005
Devin is at school without his sis today. Kara fell asleep yesterday afternoon and slept until past bedtime. She woke up about 9:30 had a little dinner and was back asleep by 10:30. Randy tried to wake her up this morning, but she was just exhausted.
I woke up this morning with no voice. It is gradually coming back, but it doesn't sound too good. I've got a dr's appointment this afternoon to see what is wrong now. I did so well last year never getting sick that I forgot how crappy it feels to feel bad for so long.
Kara and I have just been taking it easy. She got up around 9am and has been my shadow today. She is feeling a lot better. I think she was just wiped out from being so sick for all of last week. She is just NEVER sick....kindof like Devin before he was diagnosed. Until cancer struck my son I had no real experience with sick kids. I've definetly learned a lot in the past year.
Anyway, hopefully Devin is having a great day at school. He worked all last night and even this morning after breakfast finishing up the work he missed. He never complains, just does it.
Thanks for keeping Devin and all of our caringbridge buddies in your prayers.
Monday, February 7, 2005
Back to school.
The kids were up and excited to get to school this morning. They were also excited to see how much snow we got overnight....about 6 inches!!
Its been snowing all day. I worked in Kara's class this afternoon and she seemed to be doing well. When I picked them up from school they were both pretty wiped out. Kara sat down and watched a little tv and fell asleep. That was 4:30....its now 9pm and she's still asleep. We're hoping she will sleep through the night, but also wondering if we sent her back to school too soon. She just doesn't sleep this much...EVER.
Devin watched a little tv and has been working on his missed work all night. I fixed one of his favorites for dinner; roast and potatoes, but he refused to eat anything. Who knows.
Russ was out this morning to do labs. His ANC has gone up even more and is sitting at 2200 right now. They said they will leave him at 100% of oral meds and re-evaluate at his next chemo, week after next. I'm thinking if he is still high they will raise his meds. Never in a million years would I have guessed his counts to go so high while on chemo. Makes me wonder.
Not much else going on here. Its snowing like crazy and it sure is nice to not have to be anywhere right now. Snow is really pretty to look at, but not much fun to drive in. I got a surprise this morning...first time driving this car in the snow: I hit a patch of ice and had this button light up saying 'slip'...or maybe it was 'slick'. I thought that was kindof wierd..what the heck good is that doing anyone?? I don't know. I guess I should get out the owners manual and see if that is really what it means.
Please remember our friends in your prayers.
Thanks for stopping:
www.caringbridge.org/ca/christophersfight Chris still in the hospital
www.ourmelody.net Melody on hospice at home
www.caringbridge.com/mn/jaxon Jaxon and Robin sick now
www.caringbridge.com/mn/lance Lance still in the hospital
Thanks.
Sunday, February 6, 2005
I'm back....
Took a little 'break' from the caringbridge, but I'm back tonight. The kids are both feeling a bunch better and planning on tackling school tomorrow.
We've had a busy day today and the kids are tired. Devin has been finishing up his Wright Brothers report and Kara has been working on getting all of her homework done. After a few hissy fits she is done!!
Thanks for all of the notes and phone calls offering your encouragement. Its great to know we have so many caring friends out there.
Off to check on some friends.....Please remember them in your prayers.
www.ourmelody.net Melody is home on hospice
www.caringbridge.org/ca/christophersfight
www.caringbridge.com/hi/kayla Kayla's little cutie brother Kyle turns 2 today!!
www.caringbridge.com/mn/jaxon Jaxon is home recovering from surgery
www.ourboogieman.com Dillion isn't feeling very well
I'm sure there are others....off to visit.
Friday, February 4, 2005
It seems over the past few days I have had not one, but several people tell me I should get educated about cancer. Let me tell you, I have learned MORE about cancer in the past 17 months than I would ever like to know. Cancer is not something you plan. It is something you deal with AFTER you get the horrible diagnosis.
When I found out my son had cancer it was about 3 in the morning in a hospital emergency room. The words; chemo, cancer, radiation, superior vena cava syndrome...and even death still ring in my ears. I felt as though someone was crushing me and pushing me under water. It all seemed so unreal. For months after the diagnosis I kept expecting to wake from this bad dream.
I had done plenty of research about what could possibly be wrong with Devin before his diagnosis. None of it included cancer research. Why would it?? Cancer is one of those things that we think happens to someone else. The truth is cancer happens all the time and unless you have personally lived with the day in and day out nightmare of cancer in your house you just don't know how f... horrible it is. The truth is Devin had ALL TEN WARNING SIGNS OF CHILDHOOD CANCER and the doctor he had been seeing for years chose to ignore it. Like I said, I was educated to cancer AFTER the diagnosis, not before.
When I was able to get my wits about me and finally talk to an oncologist about Devin's situtation we were not given a bunch of options. We weren't given a bunch of time. We weren't even given much hope. We had an option to do emergency radiation and hope to get the tumor which had collapsed his right lung under control so that a biopsy could be done. Basically we chose the hope for life over a painful and certain death.
I can remember the relief I felt when Devin was sedated and in a drug-like coma. I felt like it was the first time I could openly cry. I can remember crying and wondering then what the hell we had done wrong. We had never treated either of our kids different and now one of them.......had cancer!!! It was unbelievable. I kept expecting these people who had surrounded us to ask us what in the hell we had done to this kid for this to happen. Nothing....We filled out tons of paperwork to include Devin in research....nothing.
I can remember being so naive about cancer that I actually questioned one of the oncologists if maybe they could keep Devin asleep so he could sleep through the treatment....this was before I found out the treatment was 9 months....plus delays.....plus maintenance therapy for a total of 24 months...2 FULL YEARS!! Like I said, until you are actually knee deep in this shit you have no idea what you are in for.
To ask me if I am educated about cancer...well, yes I think I am. I have read anything and everything I can regarding Devin's specific type of cancer....NO, I take that back. I missed the live-chat through the LLS on long-term effects of chemo drugs in the lymphoma patient; honestly didn't feel I was up to that added stress at this time, as I try to live each day one day at a time. I honestly think Devin's cancer is due to our environment, but again...we have treated both of our children the same, and as of now, only one is being treated for this horrible disease.
To act as though I am not doing everything I can to get this kid well is insulting. The internet is full of people touting cancer-killing items that have no medical backing. I have no qualms about trying things in addition to the chemo, but am not willing to throw chemo aside and put my son's life in jeopardy.
For now my son is in remission...yes, thanks to harsh chemo and radiation, but he is alive and doing well. For now I have to use the tried and true methods of keeping him in remission and cancer free and that included daily doses or oral chemo, along with a monthly injection of the push-drug vincristine. For now its the best I have that is proven to kill this beast called cancer.
I will worry about the possible side effects of these drugs if and when they appear. For now I just enjoying my son and feel so lucky to have him here with me.
Kara is feeling better tonight. Devin is feeling better too.
Friday, February 4, 2005
More of the same here.
Kara went to bed about 8pm last night, woke up around 10 to take more drugs and actually slept through the night....the first time this week!!
She woke up about 9am throwing up; bright yellow. I made another call to the doctors office to find out that the dr. doesn't work on Fridays. The idiot I talked to on the phone insisted that the yellow vomit was ok and just to keep her home and make her take little sips. Her temp is still running over 100 with alternating motrin and tylenol. They didn't prescribe her anything yesterday. Her WBC was low at 4, but all other counts were in normal range. Her urine was clean; except showed signs of ketones (getting dehydrated).
Anyway, I was told to wait another WEEK and if she's not better to bring her in...whatever. If her fever spikes again tonight I will just take her into PCMC. Surely they could give her an IV of fluids and get her back to feeling good. She is a little beyond grouchy right now and I can see why. She is just not used to it and is sick and tired of being sick and tired. I can certainly relate.
The chemo kid is doing better today. Still coughing, but not as bad and no throwing up. Miracles never cease. His color still looks good and next to Kara he looks plain flat marvelous!!! She looks AWFUL. Her lips are bright red, but that is the only place she has any color. She looks very pale and weak.
I talked to Russ, Dev's HH nurse this afternoon. He was confused why the dr's office wouldn't do anything for Kara. Me too. It never makes any sense to me why the hell things have to be out of control before the medical professionals take action. Anyway..that is my opinion anyway.
Needless to say everyone around here is a little on edge and feeling a bit too close for comfort. Kara is chilling so much that even though it is a warm 50 degrees today she can't be outside. Ah..the fun never ends.
Devin has been working on his upcoming book report so at least someone has got something done today.
Thanks for stopping by and please don't forget to pray for all of our friends:
www.ourmelody.net Melody is on hospice
www.caringbridge.com/ca/christophersfight
Chris is still in the hospital
www.caringbridge.com/mn/jaxon
Jaxon recovering from surgery
www.ourboogieman.com
Dillion not feeling so good
www.caringbridge.com/md/lance
Lance still in the hospital
Thursday, February 3, 2005
I feel like we are stuck in that movie Groundhog Day. Its just the same stuff over and over and over. Kara's fever came back last night and got really high again early this morning. I got her an appointment with the pediatrician...no, not the one who failed to DIAGNOSE Devin. A different one that we started seeing shortly after Dev's diagnosis. Anyway, this Dr. Valentine seems to be on the ball.
He wrote orders for a CBC and some liver function tests to be done on Kara. 3 different vials of blood. Let me tell you, once you have a kid with cancer they treat your whole family like ticking time bombs. They also did a strep test, which was negative and a urine analysis. I'm still waiting on the blood and urine. They told me they would call me the results after lunch...but I forgot to ask which day after lunch....who knows when I'll get the results. Could be anytime. Anyway we are used to waiting around here and are actually getting quite good at it.
Devin really slept in this morning. So much for going to school. I tried waking him up to get ready, but honestly I knew it wasn't going to happen. Randy came home from work to sit with him while I took the princess to the doctor. So now, the waiting continues.
We're just doing more of the same: tv, valentines and dominoes. I really thought yesterday things were looking up, but looks like I spoke too soon. Oh well, maybe tomorrow.
Please keep our friends in your prayers:
Melody on hospice: www.ourmelody.net
Christopher in the hospital: www.caringbridge.com/ca/christophersfight
Lance in the hospitaL
www.caringbridge.com/md/lance
Jaxon recovering at home from surgery:
www.caringbridge.com/mn/jaxon
Wednesday, February 2, 2005
Today has been more of the same. Kara didn't have a fever when she woke up, but has had a low grade fever most of the day. She said she wanted to do her homework, did a couple of problems then went to bed. She woke up around 7pm and had a fever AGAIN of 101. She says nothing hurts so I'm not sure what it is.
The cough medicine has certainly helped Devin today. He hasn't had a fever all day. He really acts like he is feeling a lot better. Randy brought Devin his schoolwork home and he has been working on it non-stop this evening. He has really missed school. He got very sad tonight when I told him he couldn't go to karate. It was after karate last week that he started feeling so bad. I told him I'd like for him to be feeling LOTS better before he goes to karate again.
Not much other news here. The weather has been sunny, but the kids haven't felt good enough to be out in it. Devin is wanting to try school tomorrow so we'll see how things are in the morning. If Kara is not better I'm going to take her to the doctor. I just keep thinking that whatever she has will run its course and leave her alone.
Home health called today and confirmed they have an order for next Tuesday's blood draw. Devin is excited that Russ will be coming out for the blood. We haven't seen or talked to Russ in quite a while. Its nice not needing a home nurse so much.
Thanks for stopping by. Please remember our friends in your prayers:
www.caringbridge.com/ca/christophersfight Chris still in the hospital
www.caringbridge.com/mn/jaxon Jaxon is still recovering from surgery
www.ourmelody.net Melody is currently on hospice
www.caringbridge.com/md/lance Lance is still in the hospital
Tuesday, February 1, 2005
Tuesday night.
Devin's fever is down, Kara's is back up. We seem to be on a teeter totter today; one goes up, the other goes down.
The clinic finally called in Devin's cough suppressant. Hopefully his fever will stay away and his cough will leave him alone for awhile. I'm not sure what to think about Kara. She felt good for a few hours this afternoon, but is back to feeling crappy again.
Thanks for checking in on my kiddos.
Tuesday, February 1, 2005
Well, this is my 3rd attempt to update the site. Hopefully this will work.
To make a long story short things are better today.
Kara was up in the night Sunday night with fever. All day yesterday she had a fever. Her eyes were very sensitive to light and she stayed in bed most of the day. By bedtime her fever had spiked to 103.8 and we couldn't get her to keep any meds down. After some time in the bathtub she finally cooled down enough to keep some medicine down without throwing it back up.
Devin is coughing ALOT. He coughs so hard that it sounds like he will cough up a lung. He coughs so much that he eventually throws up. He acts as though it is not a big deal. Coughs, throws up, cleans himself up and does it again. Just like an old pro. I guess that is one thing that cancer has taught him: how to throw up with style.
Kara still has no spots, so we aren't quite sure what she has. I'm just glad she is feeling so much better today. So far Devin doesn't have any fever so I'm keeping my fingers crossed that he doesn't get whatever she has.
I am in a really horrible mood about this cancer crap. I guess I have been reading too much again....but the truth is there are just too many people suffering from this disease. Way too many. I cannot put into words how frustrated I am about cancer.
Please pray for Melody's miracle: www.ourmelody.net
Chris still in the hospital: www.caringbridge.com/ca/christophersfight
Please keep all of the kids in your prayers. Many of us are depending on the messages from caringbridge to boost us through the day. Most people I know got 'tired of cancer' long ago and gave up on keeping up with my son. (These are my supposed friends and FAMILY members who just call when the mood strikes them) I know we are not the only ones in this situation. If you have the time to read a kid's journal....PLEASE sign it..and let someone know you care.
5pm. Kara's fever is up and so is Devin's. The clinic finally called in some cough suppressant for him. When Randy gets home I can go pick it up. Hopefully it will help him. It usually works wonders. I'm hoping his fever doesn't go up or we'll be getting admitted. His color looks good so I think his counts are still good. Hope so.
Sunday night 1-30-05
No school tomorrow. Kara has had a fever all day. We found out on Monday that a girl in her class was home with the chicken pox....this same girl showed back up at school on Friday with spots. Now we are worried that Kara may be getting them. She did have the vaccine....matter of a fact I think she had 2 of the vaccine. Our last pediatrician....the one who FAILED to diagnose my son with cancer also gave my daughter double doses on some of her 5 year immunizations.
This day has not been so bad. Not good, but certainly not what one could call 'bad' in the world of childhood cancer. We have a friend; Melody, who is not doing well at all. I read her parents journals and it makes me sick. They have the same questions any of the rest of us dealing with this shit have.....WHY????? And when are we going to find a cure for this monster of a disease?? How many kids have to die?????? Melody could use all the extra prayers and positive thoughts she can get....please visit her: www.ourmelody.net
I am frustrated. I can deal with chicken pox. Kara can deal with chicken pox....but my son, I'm afraid is a different story. I hate that this damn cancer has made him so vulnerable to anything and everything. I feel like we are just waiting for 'something' to happen to land him back in the hospital. Besides this horrible cough he seems good enough, but you just never know. Deep down I'm thinking he should be getting sick. His counts were 'too' good the other day. If he's not getting sick, then what the heck is going on with him???
Before this cancer crap I was always such a planner. I liked to have things organized and know what was going on in my life. Now the only thing we plan is to change our plans. We've already decided tonight to change our Hawaii trip yet again. I found the paper and sure enough if we went when we were planning we would miss Kara's dance recital.....we don't want to do that. Hell, we were so worried about keeping on the chemo schedule that Kara's activities took a back seat.....again. I don't want to cheat her out of that.
Can I say that I hate cancer. We have met some of the greatest people in the world, but honestly the scariness of the entire situation and realizing that this is now YOUR LIFE......is overwhelming. We've realized who our true friends are and are happy they are still on the journey with us. People are dumbfounded when we tell them Devin has nine more months of chemo. Nine more months is nothing compared to the five year countdown we will start the end of September. Worrying about relapse and all the crap that goes along with that for close to the next six years.
This cancer stuff grows you up. I look at pictures of Devin just days and weeks before his diagnosis. He seems so carefree and innocent. That is gone. He's a loving little boy, but that innocence is gone.....lost forever. For hell's sake, he's known more people die in the past year that I've known in my life!!!!!!!! Doesn't anyone care that cancer has taken over as the #1 killer in America?? How many people have to have their lives turned upside down before we get serious and find a CURE for this stuff....
Please, please, please keep our friends in your prayers.
Melody needs a miracle: www.ourmelody.net
Chris is still in the hospital: www.caringbridge.com/ca/christophersfight
Jaxon is still recovering from surgery:
www.caringbridge.com/mn/jaxon
Thanks.
Sunday, January 30, 2005
The excitement never ends around here. Devin sounds like he is coughing up his lungs and is VERY emotional. Every time I look at him the wrong way he starts to cry. These steroids are not any fun. He took his last one this morning, so hopefully the moodiness will start wearing off soon.
Yesterday we got a little stir crazy and decided to go for a drive. We landed up driving over to Alpine and looking at some of the monster houses over there....WOW!!!! We found one that was for sale on top of a hill that was just gorgeous. It wasn't open, but the floorplan looked really nice. Randy said there was NO WAY he would move to Utah County......EVER. Whatever. I had no plans of moving any time soon anyway.
Alpine is home to Peppermint Place so we went inside and loaded up on candy. Devin was disappointed that the oompa loompas weren't working on Saturday, but luckily he didn't let that ruin his day. It seemed like he was getting upset at anything and everything yesterday.
Both kids fell asleep on the way home. This is not normal...so of course we wondered what was up. Kara was burning up when we got her out of the car. FEVER; 100.7. My first thoughts were the emergency room....but then I remembered that is just the chemo kids that have to go when they get a fever. We hurried and checked Devin who registered at 98.9. Hot for him, but not a fever. Whoooo...that seemed like a close call.
Anyway, everyone was pretty restless after we got home. We pieced together some dinner out of our fridge full of leftovers. Devin is still not eating much. Kara ate nothing. We watched some tv and went to bed.
All night long was spent playing musical beds. Kara's temperature is hanging on this morning so I wasn't too thrilled to see was breathing all over Devin this morning. He sounds like he is coughing up his lungs...but still no fever. He's eaten breakfast and taken his morning meds so hopefully he will start to feel better before the day is over.....he is ready for a good day. We all are.
Please remember our friends in your prayers. Thanks for stopping by.....
Friday, January 28, 2005
Devin stayed home again today. He is feeling better, but still not 100%. Hopefully over the weekend he can get rid of his cough and be able to go to school on Monday. He is sure hoping he can go.
Kara brought home the work he missed on Thursday and Friday. Luckily it doesn't look like he missed too much. I think they had an assembly on Thursday so that cuts down on the homework.
Our weather has finally cleared up. It snowed most of the day yesterday, but we have nothing to show for it. We can see the mountains though and that is a big deal. Its so nice to be rid of the fog and smog that had been with us for the past couple of weeks. Now hopefully everyone I know that has been feeling awful will start getting better.
Kara is off to dancing tonight. I have a real feeling since we confirmed our airline tickets for Hawaii that we will be messing up her dance recital. That will not thrill her at all. I guess I should get a little more organized and things like that wouldn't come up 'after' the fact.
Nothing else to report. Our only weekend plans include getting Devin back to feeling good enough to go to school. Thanks for stopping by to check on him. Please remember to keep him and all of the caringbridge kids in your prayers. Thanks.
Thursday, January 27, 2005
Devin is feeling better. He finally ate some lunch and took his meds around 12:30 this afternoon. He started back on steroids on Tuesday, but hasn't been craving anything. He ate a little lunch and very little dinner, but has kept it all down.
We took it real easy today. He seemed very emotional. I'm sure its the drugs. Seems like they all have different side effects and none of them too good. Steroids for sure make him moody. I don't even notice him getting hungry anymore, just sad and teary. Only 8 more months of this rollercoaster to go. I'm almost afraid to say it out loud. I don't want to jinx anything.
He worked on more homework tonight. I printed him off some cursive writing sheets and he worked on those. His penmanship is just beautiful. That is one thing he truly enjoyed doing while he was on homebound for so long. As a result his writing, when he decides, is perfect.
The clinic still hasn't called me back regarding the liver enzymes. I guess actually the damage has been done. If they would have checked his blood BEFORE giving the vincristine maybe an adjustment could be done. Somehow I don't think I'm going to like their new system. The only people I see getting a 'break' here are the people is clinic rushing kids through so they can have a quiet clinic.
I've been trying to get some of our Hawaii stuff figured out. We did get our tickets re-booked, but the place we were renting in December is not available when we'll be there. Devin watched a show on the volcano park this morning so now is more interested in seeing that. The kids are really excited to think about the trip. Gosh I hope it works out. It feels like it could. I don't know why, but I never felt like the December trip was really going to happen.
Its been snowing most of the day here. No accumulation, but it has been nice to clear out the fog. Hopefully the clear air will help everyone around here start feeling better.
Thanks for checking on Devin. He loves reading your messages so please drop him a line and let him know you were here.
Thursday, January 27, 2005
Devin had a good day yesterday. I picked him up from school and he was all smiles. We came home and he got started right away on his homework.
He and Randy went to karate last night. On their way home they stopped by Wild Oats and got Devin some hemp cereal. He keeps telling me he wants some more of it, but usually forgets to remind after he should be asleep. Last night he got his cereal.
He ate some of the cereal dry and talked to grandma and uncle on the phone. He is convinced that the hemp cereal makes him feel 'good'. I'm not so convinced. About a half hour later he started throwing up. He was so sick. We got him cleaned up and he went straight to bed.
His temperature was very low last night and is still low this morning. 97. His color is gone today, but he is awake. He says his back, stomach...basically everything hurts. He isn't too happy about missing school, but doesn't feel good enough to argue about it. Hopefully he won't get any worse and I can keep him home with me. We like to avoid the hospital/clinic as much as we can.
We finally got some relief from the smog and gunk last night. It started raining late last night and has turned to snow. Its so nice to get rid of the horrible air we've been exposed to for the past two weeks. I can't help but think that is one major reason Devin got sick.
Hopefully today will be spent at home getting Devin to feeling better. Please drop him a line and let him know you stopped. Thanks
Wednesday, January 26, 2005
Chemo went as well as it can I guess. Dr. L. listened to everything I had to say and was very open to doing further investigation. He said usually if it were to come back that it would start in the area scanned by CT, but that is certainly not 100%. He said that according to the protocol that Devin wouldn't need a Galliam until September of this year, but that just isn't quick enough. We'll do it in March when we do his other scans.
Dr. L. and I had a long talk about the 'protocol' and the fact that Devin isn't truly on the protocol. He is NOT a part of the study for three reasons: 1) His main tumor was treated with radiation before we even knew what kind of cancer it was....basically to shrink the tumor so a biopsy could be done. 2) Devin had been treated by other 'doctors and specialists' for his 'asthma' with steroids so could not be included in the study. and 3) Devin was unable to receive all of the doses of aspariginase that were called for on this protocol due to his severer allergic reaction to the drug.
Anyway, it always seems like when you have these 'talks' with doctors that you have to do A LOT of reminding as to what the COMPLETE picture is. I don't mind doing it...but everytime I have to start from scratch it feels like I am re-living this over again. To think what horrible shape this kid was in is hard.
The clinic has a 'new' way of doing chemo these days. Actually I think the idea is horrible, but they didn't ask me. Starting very soon the kids will go to oncology, be evaluated by a doctor, then sent upstairs to the new infusion unit being finished up on the 4th floor. On the 4th floor they will be accessed, drawn, given chemo (or blood, etc.) then de-accessed and sent away. AFTER you get home you are to call back to a special phone number, leave your name and number AND THEN someone will call you back with results. Seems dumb to me.....as many of my questions come up AFTER I see the bloodwork.
So a few hours AFTER getting home we find out Devin's bloodwork is TOO high. Maybe he's getting sick...maybe its something else.. Who knows?? Also, his liver enzymes are screwed up again. If they would have known that before they would/could have adjusted the vincristine. (vinc stayed the same at my request). Anyway, still waiting to hear today why Dr. L. thinks the liver is acting strange again..........worries me. Of course, everything worries me.
Devin's back was really hurting last night. He felt awful and has taken pain pills around the clock since getting his treatment. I figured he would want to stay home in bed today, but he said he didn't think his back would hurt any less being at school so off he went. I told him to call me if he needed some drugs. The school can't administer narcotics and I could either bring him home or bring him some drugs. No call. Evidently he is feeling pretty good and glad to be back at school. He is definetly tough.
His oral meds have been uppped to 100% again. He started back on the steroids last night so I'm sure his counts will continue to rise. Home health won't check him for 2 weeks and we'll see where to go from there.
Thanks for stopping by check on Mr. Devin. He enjoys reading your messages, so please drop him a line and let him know you were here.
Tuesday, January 25, 2005
Chemo day.
I hate it. I've spent the last two days anticipating this day. Not only do I despise chemo and what effects it has on my son, but just the thought of going up there and dealing with 'everything'...again makes me sick. Physically sick.
I have been trying to stay upbeat, but the truth is...the crap is just that..crap. Yes..its ONLY chemo, but its toxic and I hate it. I have a feeling they will bump up his dose. When he gets 100% he does not do well, or at least that has been our experience. I like the thought of lowered dose and lowered side effects, but is it doing the job???? Is 'just' vincristine, with the oral meds doing the job? Geez...I don't like facing the reality.
Today I will have a big talk with Dr. L. Not only am I planning on talking to him about the lack of communication with his office....mainly regarding the labs and game plan for my son, but also scans. I've been thinking alot..probably too much and I'm really wondering if JUST the CTs are good enough. Something tells me that we need further proof that this cancer is leaving him alone. I mean his cancer originally certainly wasn't contained between his neck and lungs.
Like I said, I've been thinking too much. Its reality though. I'm not a pessimist, just a realist. I could pretend like none of this happened and that just doesn't work. It did happen and we're dealing with it...one day at a time.
Devin is feeling good this morning. He's already reminded me to 'emla' him up. He's planning on doing today's school work while we are in clinic. He is such a good boy. I am so thankful that he enjoys school. He is doing so well. I guess I'm just really nervous that this chemo today is going to screw up his feeling and looking good.
Send us some positive thoughts....PLEASE. Devin is ok with everything..or so it seems, its just his mom that is a basket case. Just don't tell him and he'll never know. He thinks I'm calm, cool and collected at all times.
Thanks for stopping by. Have a great day.
Sunday, January 23, 2005
We are an exciting bunch around here. Yesterday we took the kids to the Children's Museum and landed up staying with them. The head honcho of Candlelighters was sick and wasn't there and evidently a lot of kids weren't able to make it either. There were only 4 other kids registered and we never made contact with them. It was fine. A little disappointing, but not bad.
Devin and Kara REALLY love the Children's Museum in Oklahoma and this museum doesn't even come close. Oh well. Like I said, no biggie. After the museum we headed north and landed up going to some open houses. We did find one house we really liked, but care nothing about living north of Salt Lake. It was a beautiful house. Way too big and way too expensive, but fun to look at and dream.
No, we aren't thinking of moving. We have just always enjoyed looking at houses. New houses, old houses...just looking. Its fun to get decorating ideas and just see what is out there.
After the open houses we went back into SLC and ate at the Red Iguana. We only waited about 15 minutes and got a great table. Kara ate all of her food and then some. Devin ate a little salsa and picked at his food. He just doesn't eat much these days. Its wierd to me that he hasn't lost weight.
Anyway, last night was interesting to say the least. My mom was telling me that she had heard of using ear candles to relieve ear pain. I had picked some up at the health food store and we had an 'ear candling' party last night. What an interesting discovery. Devin only had one ear done, but wants to get his other one done today. It is interesting to say the least. My ear does feel better, but my sinuses are still draining. Yucky.
We are being lazy today. Randy has been studying for his next test and the kids and I have been making valentines. Kara really, really loves to make valentines. I asked if she was going to make individual ones to give to her classmates and she said NO. She was just sending them to her most special friends. OK...guess she told me.
Devin tires easily of crafts these days. He has already picked out Simpsons valentines to hand out at school. I guess it just isn't his holiday....although he enjoyed last year. His mailbox was flooded with valentines!!!!! I think Mrs. Pam had everyone she know send Devin and Kara valentines. Our postman had to work overtime to get them all delivered.
Thanks for stopping by to check on Mr. Devin. He is feeling and looking good. He is at a point in this treatment that if you didn't know he had had cancer you certainly wouldn't guess it. It makes me feel so good to see him doing so well. I'm guessing he will get lots of compliments when he goes back for more vincristine on Tuesday.
Please drop Devin a message and let him know you were here.
Saturday, January 22, 2005
The kids enjoyed Tuli's party Thursday night. They got to eat icecream and check out the wishing place. Devin was excited to take his special key and open the 'wishing room'.....that is until one of the volunteers told him he COULDN'T be in there. He was really upset with that. Randy was up there with him when all of this went on, but he wasn't too happy about it either. He said the person was very rude and evidently didn't understand how Devin had got the key..........YOU HAVE TO BE A WISH KID. Anyway, Devin was mad about it for a while, but he's over it now.
School was good yesterday. It was a short day so the kids were home by 1:30. They wanted to go and spend some of their Hollywood gift cards so we went and rented some movies on our way home. They both agreed on Napoleon Dynamite and loved it. They said they want to watch it again. I'm sure we will as the movies don't have to be back until Wednesday.
Today the kids are up and playing some game they made up about being pillow warriors. Looks alot like sumo wrestling to me. They've strapped pillows to their bodoes and are crashing into each other. Should be fun until someone gets hurt.
This afternoon the kids are going with the Candlelighters to the Children's Museum. They are excited. They want to ride the trax, but its not the time of year to be exposed to anything and everything on the train. I'm sure dad will want to drive downtown.
Park City is still up in the air. We'll see how the kids feel after we get done downtown. I would love to get out of this inversion. It is disgusting here in the valley. You hate to even be outside for fear of breathing in too much of this gunky air.
Thanks for stopping by to check on Mr. Devin. Please drop him a line and let him know you stopped.
Thursday, January 20, 2005
The kids had a good time at school. Devin said the field trip was 'pretty good'. He was just glad to be able to go.
The kids are super-excited this afternoon. At 7pm we are going to 'The Wishing House' for our buddy Tuli's wish party. He and his sisters and brother will find out tonight that his wish to Disneyworld is being granted.....I am thinking they are leaving on the 30th or so of this month. How exciting for them!!!
http://www3.caringbridge.org/ut/jankini2/index.htm
You gotta check out the new song on Tuli's site. His parents find some of the neatest music to put on his site.
Devin has a headache, but otherwise feels good. I went to the doctor today and sure enough I am getting over a sinus infection and have an ear infection. I got some drugs, of my own I might add, and hopefully I will be back to normal soon.
The air quality is going downhill here in the Salt Lake Valley. I'm hoping to talk Randy and the kids into driving up to Park City over the weekend. Sundance starts and maybe, just maybe we might get to do some celebrity sitings. I can't imagine any of the rich and famous movie stars would want to waste their time down here in this smog. Park City will be 'the place' this weekend. I read that Liv Tyler (Steven Tyler of Aerosmith's daughter) will be in town. Devin would absolutely LOVE to see her!!
Anyway, we've got to finish some homework and get our dinner before the big party. The kids are making goodie bags for Tuli and his family so I should check on their progress.
Thanks for stopping.
www.caringbridge.com/mn/jaxon Still in the hospital..not feeling so well
www.ourmelody.net Melody is at home..not feeling so well
www.caringbridge.com/ca/christophersfight Chris is still in the hospital
Thursday, January 20, 2005
Off to school.
Last night Devin and Randy started karate, while Kara started tumbling through community education. They all had a good time. Kara was worn out. It was nice to not have to fight with her to go to bed.
Kara and I went by the library after tumbling. We haven't been in the library closest to our house in quite awhile thanks to messy road construction. Kara was glad to go back to 'her' library and see they had made some improvements. They have a new rug and tables and chairs in the kids section. New shelves and computers. It looks good. Kara picked out a few books and a veggietale movie. Evidently Veggietales are very popular in her class because she talks about them all the time.
Anyway, we had a good time going to the library..just the two of us while dad and Devin were doing karate. Kara was getting ready to try out the new rug in the kids department when she noticed that someone had let their kid poop on the brand new rug!! I couldn't believe that. You would have to be a major idiot to not realize your kid had pooped all over that rug. How disgusting!! I felt sorry for the guy who had to deal with that mess. What do people think???
That situation reminds me of the time we took Devin up to the clinic and saw a mom LETTING her little boy pee straight out the mini-van door into the parking lot.....with a bathroom a hop, skip and a jump away! No wonder these kids get sick so often when they are allowed to use the world as their toilet. It makes me sick.
We are so incredibly germaphobic since Devin was diagnosed. I think we have at least one bottle of hand sanitizer in every nook and cranny of our house, cars, school, etc..
Anyway, enough about that. Devin is off with his class on a field trip to the newspaper office. He was so excited to get to go. I'm so glad he is well enough to go. It just seems like anything can happen, but today things are good.
Thanks for stopping by to check on Devin. Please leave him a message and let him know you stopped.
Please remember our friends in your prayers. Chris and Daniel are still in the hospital.
www.caringbridge.com/ca/christophersfight
http://www2.caringbridge.org/europe/danielrochford/
Jaxon is still in the hospital recovering from surgery:
www.caringbridge.com/mn/jaxon
Melody is at home: www.ourmelody.net
Wednesday, January 19, 2005
Last night was not so good. Devin looks pale to me, but Randy thinks he looks ok. Homework time was horrible. Devin did NOT want to do his and made it take ten times longer than it should have. One of the things he was working on was a math pre-test. It was horrible. It makes me wonder how he would ever finish the test at school.
Kara was running around like a nut when she was supposed to be doing her homework. You'd think she might be a little more careful after Monday nights accident. She is a silly girl. Luckily, no more accidents.
Both kids had trouble falling asleep last night. Devin was trying out a new 'Nikken' sleep system and I was so hoping that he would fall right to sleep. I kept telling him how much better he was going to feel.......hopefully when he wakes up. He just seemed to be in such a horrible mood last night. Of course I can't help but wonder if his counts are starting to drop.
Kara was up several times in the night screaming. She had a different complaint each time....never her mouth though. I don't know. Maybe they both have something. She finally went back to sleep about 4am in my bed.
I'll be waking them up pretty soon to get ready for school. The way everyone was feeling last night I guess anything is possible. If they are both sick I just wouldn't be surprised. Not only are they exposed to lots of germs at school, but our air quality is also bad (and getting worse) right now.
Better go wake up some kiddies. They are slow movers in the morning.
Thanks for stopping by. Please remember all of our friends.
***Devin and Kara were feeling good when they got up and around this morning. They are both off at school. ***
Tuesday, January 18, 2005
Things are ok here. Kara took a fall last night after her bath....I can just assume her feet were wet and caused her to fall. Anyway, thank goodness she is missing the tooth beside the two middle teeth or I'm sure it would be gone. She has a cut inside her mouth on the gumline and on her lip. The lip looked fine this morning. The gum looks awful.
Both kids were in good spirits today. I was so glad. I have been dealing with a sinus infection since last Friday and was ready for some 'quiet' time. I decided yesterday to take one of Devin's septra pills when I gave him one. I felt kindof lightheaded most of the day, but didn't think much of it. Before bed, we both took another. That was not the thing to do. I haven't felt this sick-awful in a long time. I looked up septra this morning to find out it is a sulpha drug. I'm allergic to sulpha. Hopefully I'll get this stuff out of my system soon and begin to feel human.
As I lay still in bed last night hoping to avoid throwing up, I couldn't help but feel so extremely awful about the drugs these kids take. I can remember Devin's cycles of ARA-C making him so sick that he couldn't walk. He never complained. I feel like such a whiner compared to him. He is so strong. We are so proud of him. I cannot help but wonder what is in store for him. He seems to have gone through so much without complaining. He truly is my little hero.
Thanks for stopping by to check on Devin. He is fine. He looks good. He feels good. Its just his mom that is a big wimp.
Please keep our friends in your prayers. Little Jaxon had his surgery today: www.caringbridge.com/mn/jaxon
Chris is still in the hospital: www.caringbridge.com/ca/christophersfight
Daniel is still in the hospital: http://www2.caringbridge.org/europe/danielrochford/
Melody is having some bad days: www.ourmelody.net
Thanks for stopping by.
Monday, January 17, 2005
It was a low key weekend. We didn't want Devin risking busting his head open again, so we just took it easy. It was nice since the two previous weekends were spent painting.
Saturday Devin went with Randy's dad to a train show while Randy studied for his next test. Kara and I baked a cake for Grandma and Willie's birthday. We celebrate Willie's birthday on Grandma's and Casey's on Valentine's Day.
Devin's head looks good. So good that I can't even find where the injury was. Thats good. It means his body is working the way it should. Hopefully his counts will stay good and he will avoid getting sick any time soon.
Grandma was sick yesterday on her birthday. I guess its a good thing she didn't get to come see us. Hopefully she will get Nanny settled and be out pretty soon. The kids keep asking when she's coming back. They REALLY miss their Gramster.
Devin has a friend over this morning playing with him. They are having quite the time playing keep away from Kara. It is good to see him having such a good time.
Thanks for stopping by to check on Devin. He doesn't have chemo until the 25th so hopefully we can stay completely away from the hospital until then.
Saturday, January 15, 2005
Things are quiet here this morning.
Yesterday started off as an uneventful day. I worked in both kids' classrooms, met for lunch with a friend and worked on getting the house ready for our company.
I went to pick up both kids at 1:30. As I pulled into the driveway of the school I could see a mom a few cars ahead of me jump out and run. The next thing I know I am looking up and she has ahold of DEVIN with blood everywhere!! I parked the car and went to him. Evidently he was scraping mud off of his shoes and when he raised back up had hit a metal railing. He had hit his head, about 2 inches into his hairline, and blood was everywhere.
Devin was hysterical. He was crying and bleeding and was a big mess. I got some paper towels out of my trunk and started to try and figure out how bad he was hurt. It looked like a horseshoe shape cut and was bleeding pretty bad. I asked him where he wanted to go. He told me he wanted to go to Primaries since they knew him and could take care of him.
To make a long story short, I called ahead to the clinic and told them what had happened. They called the ER and told them we were on our way up there. They took Devin straight back and put some lidocaine medicine on it to numb it up. After they finally got it cleaned up they decided it was going to close on its own. Four hours later we were on our way home.....no stitches and no staples; just a sore head.
The actual injury itself is small. Probably about a 1/2 inch cut. As long as it doesn't split they will leave it alone. They gave me a sheet of symptoms to watch for and luckily everything seems good.
He is fine this morning. He said maybe a dull headache, but nothing major. Just a little excitement to start off the weekend!!
We got home after 6pm to our company. The kids were so excited to meet Jimmy. Devin and Kara really had a good time talking to him. He and Devin had quite the talk about 'hippy buses' last night; Devin's latest obsession. Devin was sad to wake up this morning and find out Jimmy had gone. Hopefully Jimmy will be back to SLC in March and will come back and see us. Thanks for making the time to see us JY!!
This morning we are off to a slow start. We are trying to decide what we will do. Randy has some work to do, but I know he would rather stay home and hang out with us. Playing 'Guess Who' and 'Pretty, Pretty Princess' is much more fun than number crunching.
Thanks for stopping by to check on Devin. Devin loves your messages so please drop him a line and let him know you were here.
***New pictures in the photo album***
Thursday, January 13, 2005
Another good day. Another day the hospital doesn't call me back. In a way I don't mind because it is nice to see him feeling so well. I know once he gets upped back on his 6MP and methotrexate things could go downhill. Its so nice to see him running around full of energy and wonder how I'll get him to settle down. Its been so long.
Randy and I made a trip down to the downtown Delta office to re-arrange our trip. Delta wasn't willing to work with us much over the phone, so we went in person and 'got things straightened out'. We are planning on Hawaii in May.
The kids were so excited to hear the news. We had the option to go in March, but the flights available were awful...a couple of plane changes and horrible times. I don't want Devin, or Kara for that matter, to be tired out before we get there. Its exciting to think about.
I'm working in both kids classes tomorrow. I help give the individualized spelling tests in Devin's class on Friday mornings. I don't know what I will be doing in Kara's class, but will be going there as soon as I finish in Devin's. It should be a fun day.
We've got one of Randy's friends in town tomorrow night. The kids are excited to meet Jimmy and tell him everything they know. They love to have company and show off. I guess all kids do. I'm sure between the two of them they will keep him entertained. They are funny together.
The sun was actually out here in SLC today. A nice break from the rain. Clear skies so we can actually see the mountains. Its so much different this year than last. I am so glad. Everytime I think of all the things we are getting to do I am just amazed. Simple things like going out to eat or painting...or just spur of the moment things. Its nice.
Thanks for stopping by to check on Devin. He loves your messages so please drop him a line and let him know you were here............he won't know you were here unless you sign.
Wednesday, January 12, 2005
An ok day.
I picked Devin up before lunch for the dentist. The dentist couldn't believe how good Devin looked. Everyone kept commenting on how great he looked. He loved getting all of those compliments.
The dentist said Devin's mouth/teeth looked GREAT. No cavities; thank goodness. Devin has never had a cavity and doesn't want any. He is very proud of that. The dentist said you could tell that Devin had had some gum problems; probably from the chemo. I know he has in the past, but he seems fine now. The dentist said to keep him on the peridex to help when his counts go down especially. Good report.
We met dad at Gardner Village for lunch. Devin ordered the buffalo chicken, of course. He ate every bit. I didn't figure he would eat much since he's not on steroids, but he surprised us all. It seems like its feast or famine with him.
After lunch he insisted on going back to school. I am so glad he likes school so much. He is a little mad because school is out on Monday for MLK Day. He was hoping grandma would come out for her birthday, but no such luck. She is still working on getting Nanny arranged.
The rain has stopped.....finally. I don't know what tomorrow's weather is supposed to be....most likely cold again. We've only had highs in the 30s.
Good night...please sign and let Devin know you were here.
Wednesday, January 12, 2005
Things are going good here. Devin went to scouts on Monday after school and had a good time. It was his first time to go since his diagnosis. It was all new to him; a new pack and a new group of boys. They went to the city hall so he has been telling us all kinds of things about what goes on at the police station.
Yesterday was a good day. He had his counts drawn and his ANC is all the way up to 1500. I got the results from home health. He was so excited to hear his counts were up. We were able to schedule him a dentist appointment this afternoon. We figured he could go while he was off for Christmas break but his counts bottomed out on us, so we are taking advantage of the good counts.
I haven't heard from clinic about his meds. Last time they took over a week to get back to me. We'll see what happens this time. They aren't real good at follow up calls; especially when its not a life or death situation. I will bet his chemo will be increased. Not looking forward to that....he has been feeling so good and having so much energy!!
We have had a rainy week here in Utah. We woke up to a little snow this morning, but the sun is out so it won't last for long.
Thanks for stopping by to check on Devin. Please drop him a line and let him know you were here.
Monday, January 10, 2005
The kids had a lazy weekend while mom and dad worked on the bathroom. What a mess wallpaper is. The kids 'helped' a little, but quickly decided it wasn't much fun.
Lucky for us the "Full House" marathon was on yesterday. That kept the kids entertained for quite a while so we could concentrate on the bathroom. The kids were about to go nuts because we were still getting paint mixed when the show was supposed to be starting. It was funny.
Last night I thought maybe Devin was getting sick. He was having trouble falling to sleep and just didn't seem right. About midnight I felt of him and he was burning up. Luckily this morning he jumped out of bed ready to take on the world. He absolutely hates to think about missing school.
Russ will be out in the morning to do the labs before school. Hopefully his ANC will be high enough to go to the dentist. I know he is past due. The last time he went to the dentist was while he was in the hospital. His mouth looks good, but it would be nice to get an expert opinion. I'm sure Kara is overdue too. Either my mom or Randy took her the last time she went.
Not much exciting going on here...and believe me that is a good thing. We are just thankful to have two healthy, happy kids doing normal kid things. Its raining like crazy today, so its a good day to stay inside out of the cold.
Thanks for stopping by to check on Mr. Devin. He'll want to see who stopped by while he was at school so please leave him a message and let him know you were here.
Saturday, January 8, 2005
A blustery day. It was so windy over night that our snow BLEW away!!! I woke up to NO SNOW!! Wierd.
Kara didn't go to dancing last night. When it was time to leave it was snowing and blowing so hard that I didn't want to get out in the mess. She'll just have to work twice as hard next week.
Devin is good. We got a new bookcase for his room today so he is supposed to be getting it set up. I don't think he is working too hard on it because I can hear the keyboards.......he certainly has a mind of his own!! I think he really likes to do things on 'his terms' this year after having so many rules last year. Heck, I'll cut him slack. The books will wait.
Everything else is ok here. I've been stripping wallpaper and we went and got paint samples this evening. Once we pick out the paint it shouldn't take long at all. It'll be nice to have it done. I think I've talked Randy into getting a new mirror for the bathroom too. We were looking at a bunch while we were shopping for paint.
Tonight is methotrexate night. He's still just on 50% and last week was a piece of cake. We're not expecting any ill effects from it this week either. Russ will be over on Tuesday to re-check counts. He's got to get his ANC to 1000 to increase the oral meds. He seems good though.....I was worried about him going to school this week, but things worked out.
The kids have been busy the past couple of days, especially Kara, making cards. Grandma's birthday is coming up and boy do they have some nice cards to send her. Kara LOVES to make cards. In her opinion the more glitter the better.
Thanks for stopping by to check on Mr. Devin. Drop him a line and let him know you stopped.
Friday, January 7, 2005
Its COLD here today!!! We are supposed to have the winds picking up and more snow by this afternoon. It certainly feels and looks like winter this week.
The kids were anxious to get to school this morning. We got all the way to school and discovered Kara had forgot her backpack. Devin got out of the car and headed for class, but Kara REFUSED. I drove home with her in the car to retrieve the backpack, then drove her right back up there. Luckily we don't live too far from the school. I tried to tell her I would bring it right to her, but she wouldn't hear of it.
I worked in Devin's class this morning giving spelling tests. They have a student teacher working in there now too, so lots of helpers were in the classroom this morning. Devin seems to really like the student teacher. His name is Mr. Ingalls.
This weekend we are going to try and get the hall bathroom wallpaper off and re-painted. I'm just not quite sure what color to paint. Maybe a pale yellow. I don't know. I've got to get rid of the wallpaper before I can even think of painting.....not looking forward to that.
Kara starts back to dancing this evening. She is excited to go and see all of her dancing friends. She loves dancing. Devin said he is going to take advantage of her being gone and call one of his 'friends'. He doesn't like to talk on the phone when Kara is around....she has a BIG mouth!!
Thanks for stopping by to check on Devin. He'll be online later after school so please drop him a line and let him know you were here.
Thursday, January 6, 2005
More snow!!
The kids are away at school. Devin seems to be having a really good week. I'm so glad. He was a little nervous after being away so long, but things seem to be going well. Tomorrow I get to work in his class.
Randy is off skiing today. Good thing he took his goggles, it has been snowing down here all day. I bet he will be good and tired when he gets home.
Kara's room is closer to being done. She loves it and says she 'sleeps better in it since its lavendar'. It is a very pretty color. I'll have to get the pictures downloaded soon.
Thanks to everyone who stops by to check on Devin. Please leave him a message and let him know you were here.
Wednesday, January 5, 2005
Yesterday was a MUCH better day!!! Devin had the biggest smile on his face when I picked him up. What a relief!!
He asked about Kayla as soon as he got in the car. He and Kara were disappointed to hear she was still in the hospital. I know it scares him to know she has been in the hospital twice in the last few weeks. He is very paranoid about getting sick. He has 3 bottles of hand sanitizer with him at school. He doesn't want to run out!!
Last night we watched a little of the Orange Bowl. We were all disappointed to see how bad the Sooners got beat. OUCH!!! Randy kept saying he couldn't believe how upset I was about the game.........I reminded him EVERYONE I knew wanted the Sooners to win and probably had money bet on the game. There is always next year.
The news last night showed the 344th Fighter Wing leaving for Iraq. These are the guys that took Devin under their wing...literally back on November 19th. What a day!!! We are praying that they all return home safe and sound. They were just so nice to our family.
We woke up this morning to snow!! It has been predicted for over a week and finally showed up over night. It is a real winter wonderland out there. Its so pretty and clean. The kids are hoping it sticks around so they can try out their snowman kit after school.
Have a great day and don't forget to sign in and let Devin know you stopped.
Tuesday, January 4, 2005
Yesterday was an ok day for Devin. I picked him up from school and he was wiped out. His back has been hurting, again...and I think the stress of going back to school and dealing with so many people adds to the hurt. He seemed a little down, but I attributed it to being tired.
We stopped by Cold Stone on the way home for some 'pep up Devin' ice cream. It seemed to make him feel a little better. Once we were home he called Taylor to come over and play Gamecube. He was pretty quiet the rest of the night..........until bedtime.
Randy said he was very upset last night. Usually when he is upset he needs his mom, but he seemed to need his dad last night. Randy relayed all of this to me this morning. It all seemed to revolve around the playing of dodge ball and him getting hit at recess. I guess he was afraid to tell me. He just wants to do 'normal' things and I can imagine he could just see me marching up to the school to inform them that he could NOT play dodgeball. Geez, I honestly thought that game was outlawed.
Anyway, he was anxious to get moving this morning. He said absolutely nothing about the dodgeball incident, so I didn't either. Evidently this was not a subject he felt like we needed to discuss.
Now I sit home and worry. Hell, I am always worried about something. The first thing I do when I wake the kid up is feel his forehead. It feels like we are just waiting for 'something' to happen. Its quite a way to live. I hate cancer.
Randy and I have been talking a lot this last week about Devin's diagnosis. Its a miracle he is still here with us. Its so unreal to me that the 2 medical professionals that he was seeing for weeks before the big C was discovered are so removed from the situation. I wonder if they ever lose sleep at night or have to cancel vacations? I doubt it.
Monday, January 3, 2005
Its back to school day !!!!! The kids were really excited and a bit nervous too. Devin just couldn't go to sleep last night. He kept talking and talking.
This morning he was up and ready for school. He was so excited to take his new backpack to school. He wants to tell everyone about his Scottish friends that sent it to him. It is a really cool Harry Potter backpack that looks like a briefcase and lights up. Cool.
Kara was obsessing over her hair this morning. I bought a hair straightener and she finally tried it out this morning and loved it. She was doing a really good job with her hair. We got four inches cut the other day and since she straightened this morning it is still down past her waist! She was thrilled with the way she looked this morning. She kept saying she 'looked like a teenager'.
Randy and I got Kara's bedroom painted this weekend. It is now officially lavendar with bright white trim. We went and bought some new blinds to put up. It will really look nice when we get it put together. She is really happy with it. She said she can't wait to sleep in it tonight. I bet she will go to sleep early tonight without any problem. They are both going to be tired.
Devin is feeling pretty good. He took a pain pill this morning for his back, but other than that has no complaints. He was excited to get back to school and see his friends.
I found out last night that our wee friend Kayla is back in the hospital. She is just the cutest little thing. Some extra prayers and well-wishes would be appreciated: www.caringbridge.com/hi/kayla
Off to check on some more kiddos. Please leave Dev a message and let him know you were here. Thanks.
Saturday, January 1, 2005
Happy New Year!!
Its been a very laid back day around here. The kids were able to stay up until past midnight. They were thrilled with themselves and talked dad into helping them let off some fireworks out in the front yard. It was snowing pretty hard at midnight and it was really pretty with the sparks going up and the snow falling down.
We went over to Randy's parents house for New Years dinner this afternoon. Devin didn't eat any ham and potatoes, but did manage to eat some beefstick and crackers. Once he got home he ate a couple grilled cheese sandwiches.
The steroids have definetly kicked in. He has been hungry for sandwiches; grilled cheese, beefstick and peanutbutter. We are running out of 'his kind of bread'...wonder white that is. Everyone else is eating the seven grain bread these days.
He hasn't been feeling so good since we've been home. He says he feels shaky and his temp is a little up for him. 99.6 He usually runs low...like 96.8, so this is definetly a temp. We will watch him. He has just been lying around playing his new games. Kara has been staying out of his way making pictures to send to everyone.
Tonight is methotrexate night so I would imagine he will be sleeping in tomorrow. The methotrexate usually gets him down. He's also on the 50% dosage of 6MP, along with steroids. Oh what fun this chemo stuff is.
I have really been wondering alot about these drugs lately. With all of the recalls and warnings on the main stream drugs it makes me wonder about the effects of these chemo drugs. The more I read, the more I DON'T want to know.
Thanks for stopping by to check on Mr. Devin. He appreciates your messages, so please drop him a line and let him know you were here.
Friday, December 31, 2004
Its New Years Eve!!
We are ready to say good-bye to 2004 around here. We've been waiting all day for the snow to begin, but still have nothing but heavy winds. The storm should be here sometime soon.
Everyone is ok around here. Devin has slowed down a bit with the vincristine, but for the most part feels good. Kara and I must have some kind of virus we are fighting. Neither of us has felt too great for the past couple of days.
We have spent the past few days just being lazy and enjoying our Christmas gifts. Devin got a Simpson's 'Life' game and we have been playing it off and on all day. He is loaded with money and I have no money and a bunch of kids. He thinks the game is great fun.
Thanks to everyone who has helped us make it through 2004. Your prayers and positive thoughts have kept us afloat during the not such good times of this last year. Thanks for hanging in there with us. Happy New Year!!!
Tuesday, December 28, 2004
We won the lottery again today: CLEAN SCANS!!
We basically spent the day up at the hospital and were able to get scans done while we were up there to get the vincristine. Devin's counts are pretty good. He is still at 50% on oral chemo. He starts the steroids tonight, so they won't re-check his blood for two weeks.
After my phone call last week everyone at the clinic was VERY attentive. Dr. L. was in Devin's room to see him before we could even get settled. That was nice. He didn't up the vincristine dose, just kept it the same. He said Dev is still a little flat footed and floppy so he wants him back in physical therapy for a while. Devin won't mind. He loves going to physical therapy.
Looks like school is a go for next week. Tonight he is feeling good and just glad to have today's events behind him. He doesn't let on, but scans are stressful for him too.
Kara took her new baby doll up to the clinic with us today. That baby is really getting some good care. Kara came into my room at 4:30 this morning and woke me up to 'watch the baby while she went to the bathroom'!! She isn't letting that baby out of her site for anything. She is really cute with it.
Thanks for stopping by to check on Devin. I am proud to report that he is still in remission and looking and feeling well.
Monday, December 27, 2004
Christmas was great. Its still going on. They are a bit slow at opening gifts, but that is fine with me. It is so fun to watch them enjoying their things.
Santa did pay us a visit. Devin was thrilled with his ninja sword set. Santa left a note with specific instructions on what NOT to do with the swords. We don't need anyone getting hurt around here.
Devin started back on chemo a few days ago and it is showing its effects. He was up bright and early on Christmas Day, but has been sleeping in the past couple of days. He's just wiped out. Tomorrow he will go in for the dreaded vincristine. He is mad that he has to go in, but at least he won't have to stay for long. We'll get the scans set up while we are up there. I want to make sure that I can have Dr. L. there to interpret them for me.
The holiday has been just great at our house. The kids are both healthy and happy. What more could we ask for?? It is such an improvement over last year. Its so nice.
Thanks to everyone who comes to visit and check on Devin. He appreciates all of the cute cards and gifts that have been sent his way. Your generosity is amazing.
Please sign Dev's guestbook so he'll know you stopped by. I'll get some new pictures posted soon. Thanks.
Friday, December 24, 2004
Christmas Eve...
So much better at our house this year than last. Last year we were in the depths of hell wondering if we'd ever be out among the living. Today, Devin is stronger and feeling good. We are so grateful.
Our eyes have truly been opened to the miracles all around us. So many times we have taken the 'normal' things for granted. Never again. Each day is a gift. Each day is a miracle.
We are thankful for the many friends we have met on this path of childhood cancer. You are all very special to us. Who knew there were so many children out in this world suffering, until our eyes were opened. Thank you to caringbridge for introducing us to the greatest group of people on the planet.
We share your hopes and fears associated with these horrible illnesses. If only there was a magic wand to make all of the bad go away, but then we wouldn't have been privileged to meet YOU. Thanks for your friendship, prayers and positive thoughts. We couldn't have done it without YOU and so glad we didn't have to...have a wonderful Christmas!!
The Ross Family
Thursday, December 23, 2004
Devin didn't care for the skiing. He wasn't too specific as to what the problem was, but indicated he didn't care if he went again anytime soon. I have a feeling it has something to do with feeling weak, but that is just a guess.
Yesterday was a good day. We took some packages around that had been sitting downstairs waiting to be delivered. Devin even took one to a special girl in his class and got one in return. He was beaming all day from that experience!! He was quite surprised to get a package from her...me too. It really made his day.
Last night we went to the Hale Theatre to see "A Christmas Carol". It was really good and the kids just loved it. We have been talking about going to see it for the past two Christmases. Two years ago Kara wasn't old enough; no one under 5 is allowed. Last year Devin was in bad shape so we didn't go anywhere that crowds were likely.
On the way home we drove around different neighborhoods and looked at Christmas lights. There are lots of pretty ones out there. This one neighborhood we visited has "The Night Before Christmas" story all done. It is really neat and draws quite a crowd. Pretty soon the kids started fighting in the back seat so the fun was over.
Before bed Devin started turning red and feeling not so good. I was afraid he was getting sick....really afraid, but luckily no fever. He kept complaining of feeling nauseaus, but luckily he fell asleep before anything came up. Today he is fine. Maybe a little quiet, but in a good mood.
We are crazy around here. We made another pan of 7 layer bars and another pan of raspberry bars. Last night before bed we made some very red rice crispie treats and the coconut balls. We have been wanting to make them for a week or so, but didn't have any room in the fridge thanks to an over-supply of IVs taking up an entire shelf.
We've got to get back to Devin's post office sometime today and pick up a package they have waiting. Also, we'll make a quick trip to the store for some more chocolate for the coconut balls. I can't believe we are still making things. Kara is constantly looking up recipes trying to find 'just one more thing' to make.
Please remember all of our little friends in your thoughts and prayers. Our favorite little princess, Kayla, is in the hospital:
www.caringbridge.com/hi/kayla
Also, a new friend; Daniel is inpatient as well:
http://www2.caringbridge.org/europe/danielrochford/
Thanks so much for stopping by to check on Devin. He would sure like to know you stopped, so please do drop him a note.....even if its just a "HI". Thanks.
Tuesday, December 21, 2004
Yesterday was a good, busy day. The kids and I finally found the gifts they had picked out for Pookie and got them wrapped and in the mail. We also baked another batch of cookies and got them all iced and ready. We are getting tired of baking.
Randy called yesterday with the news that he had passed his exam. We were all thrilled with that news. With each test he passes the closer he gets to getting his credentials. The kids wanted to take him out to dinner to celebrate, but couldn't agree on where they wanted to go.
When Randy got home last night they were still arguing over where we would go. Finally Randy picked Dos Serranos, only to find out they are closed. His next option was the Bohemian Grill. It was packed due to Christmas parties and took us over 2 hours to get our food. Randy's was inedible and Kara took a couple of bites of hers and threw it up. Not a good experience.
Everyone is fine today. I finally talked to a nurse in the clinic yesterday and found out about Devin's meds. He is back on 50% oral chemo....FINALLY. It made us nervous having him off for so long.
The kids and I babysat a friend's baby this morning. After lunch, Randy's dad picked up Devin and Randy to go skiing. Devin will have to rent skis this time. He hasn't gone since he was diagnosed and is SO EXCITED to be going. I hope it doesn't wear him out too bad. He was really looking forward to it.
Hope that everyone is gearing up to have a great holiday celebration. We are all feeling good and looking forward to the big day. The kids are refusing to open any packages until Christmas day........which will make for a long present opening session. It will be fun!!
Thanks for stopping by to check on Devin.
Monday, December 20, 2004
Yesterday was a good day. We built a gingerbread house with only a few scuffles, then went to the mall for a couple of last minute things Randy needed to pick up. We did the gingerbread house the easy way this year and used a kit. Boy, was that painless. The best $6 I ever spent!! Usually we build from scratch and spend an entire day just getting it to stick together; this worked out perfectly.
Last night Randy decided we should go to the movies. We went to see Lemony Snicketts Series of Unfortunate Events. It was an interesting movie. The kids seemed to enjoy it, but Kara was up in the night with nightmares. I DO NOT recommend it to little ones at all. Lots of scary scenes. Devin seemed fine with it, but Kara was a different story.
Today we are baking AGAIN. We made up another double batch of sugar cookies and a batch of cranberry chip cookies. The house sure smells good. The kids are wanting to make some rice crispy treats....green ones that is, so maybe we can do that this afternoon.
Its a cold and cloudy day here in Salt Lake City. There is a heavy frost on the ground and trees. I'm hoping we'll get a good snow before Christmas. Everything looks so blah right now.
I'm STILL WAITING to hear from the clinic on Devin. I did find out that the person who normally does the call backs won't be back until after the first of the year, but no explanation as to why the person taking her place is not returning calls. In the mean time, Devin is still off of chemo.....now 2 weeks off. Amazing. He is feeling good, but of course if worries us for him to be on nothing.
Thanks for stopping by to check on Devin. Please drop him a line and let him know you were here.
Sunday, December 19, 2004
We had a good day yesterday. We stayed home almost all day and let the kids really make a mess of downstairs. They had out all of their playhut tents all over the family room. They really played nice together.
We left the house last night to ship off a couple of packages at Office Max. We had no idea that Santa would be there, but sure enough he was sitting in there looking pretty lonely. Devin and Kara told him what they wanted and he just said OK. Wow...if only it was that easy!!
When we came out of the store a thick fog had come out of nowhere. We were planning on going back to Gardner Village to see their live nativity, but it was so cold and foggy we decided to skip it. Just didn't seem like weather Devin should be out in if he didn't have to be.
We ran by the grocery store and picked up some steaks to grill. All of the clerks were stopping to ask about Devin. They are always so excited to see him in there shopping.
The steaks were really good. Of course Devin wouldn't know because he is still refusing to eat real food. The kid only ate half of a grilled cheese sandwich all day. He is really looking a lot thinner this week. I would imagine his appetite will pick back up when he goes back on the steroids. They always seem to do the trick.
While fixing dinner two different sets of neighbors dropped by. The Fergusons brought over a box that the kids refused to open until Christmas and the Lairds brought over a hot loaf of bread. Perfect timing. Our neighbor makes the best homemade bread. Devin just took a little taste, but Kara and I each ate a couple of pieces.
Kara and I made chex mix last night. I told her that grandpa really liked chex mix and that my grandma, his mom, used to always make a big batch at Christmas. She thought we should make some and send to him. Looks like another trip for last minute shipping for us. If we can get the date nut cookie recipe from grandma we'll make those too.
I've posted some new pictures of the kids in the photo album. One of Kara after her dance last Saturday, one from our trip to Gardner Village this week and a Santa picture.
Thanks for stopping by to check on Devin.
Saturday, December 18, 2004
Yesterday was a lazy day here. We never left the house until after dinner. We just played around and wrapped presents, addressed a few Christmas cards and opened Devin's stack of mail from the post office box.
Devin got the most beautiful cross-stitched quilt in the mail yesterday. I'll get my pictures downloaded later today and get it on his site. He was in awe of it. He still is. It is done in a patriotic theme and is just gorgeous. Thank you to the many volunteers who put it together for him. We plan on getting it hung up. It is much too pretty to use.
We still haven't heard from the clinic so he is still off of all chemo. It will be two weeks tomorrow since he has ingested any poison...aka chemo. He sure has been feeling good. Lots more energy and smiles than I have seen in a while. I'm dreading him going back on it, but know it is inevitable.
Today is another lazy day here. We've made some cookie dough to take to Harrison and Sam's house later this afternoon. We are going to have a cookie baking party. The kids are really looking forward to that. More baking!!
Thanks for stopping by to check on Mr. Devin. He appreciates your messages, so please drop him a line and let him know you were here.
Friday, December 17, 2004
Devin is sleeping in this morning. He was looking pretty pale by the time we went to bed last night. At his insistance we just ran, ran, ran yesterday.
He woke up BEGGING to go to the mall. This is pretty out of character, but I figured if he wanted to go we could go. He was in need of some Hickory Farms beefstick so that was his main motivation. No, Devin doesn't snack on the beefstick....he lives off of it!! Yes, Devin's food choice is the nitrate-laden beefstick and yes one can survive on beefstick alone. He's been doing it for about a week now.
He checked out the two sword shops at the mall and was highly disgusted at me when I told him NO, he could NOT buy a sword. Who knows, maybe Santa might already have one for him. At any rate, we had the discussion about not buying things for yourself at this time of year.
He came home from the mall exhausted, took a little break and was ready to go again. We made up trays of cookies to take around to the neighbors we had missed last week. Now that we've got everyone covered we can relax. We've still got lots of stuff left around here; too much actually. We always get a little carried away with the Christmas baking.
Its quiet and WARM at our house this morning. The 2nd heating guy came over yesterday morning and was able to fix our heater. What a relief. He was here for a couple of hours working on it. I was really getting nervous. Having heat is sure something you take for granted; especially this time of year.
I'm STILL WAITING to hear what the clinic wants to do with him...as far as they know I don't have the blood results from Tuesday. I can't believe that place. Here it is Friday and no word from them......amazing.
Thanks for stopping by to check on Devin. Hopefully he will wake up feeling like a million bucks. We can only hope.
Thursday, December 16, 2004
Its early and both kids are still asleep. Its pretty cold in here, even with the space heaters we borrowed from Randy's parents. I would imagine the kids will stay in bed as long as possible today. I don't blame them one bit.
Another heating guy will be out this morning. Hopefully he can fix the furnace we have. I know I am jumping the gun here, but I really (really, really, really) don't want to have to buy a new furnace. I know worse things could happen, but I'm just not in the mood for it right now.
I still haven't heard back from the clinic. I've got Devin off of all chemo still....he hasn't had any oral meds since the 5th. I don't know when they are planning to re-check his counts....I don't know much of anything. That clinic is ridiculous. I am beginning to wonder if the nurse I am calling for is gone from the office. I have called 4 times and she has yet to call me back.....you would think that the front desk would get a clue, but maybe they are waiting for me to get a clue. I don't know....frustrating is a good word for it.
Kierstin and Chris came by yesterday afternoon to bring the kids some gifts. The kids were so excited to see them that they paid no attention to the gifts and went straight to playing. They brought over the cutest 'snowman kit'; complete with a top hat. Now we are all ready for it to snow. They also brought over some scone mix and jam. Sounds good to me; we will for sure be trying it out soon.
Their mom, Stacy, was telling me all about the car accident she was in yesterday afternoon. Poor Stacy, she was really upset. She has just not been having the best month lately. Her mom's cancer has relapsed and now this. Life is certainly not fair. She said the whole front end of her van is GONE. Hopefully her insurance will total it out so she can get something else.
No real plans today. Hopefully I can get through to the nurse at the clinic and find out what the plan is for Devin. We shall see.
Thanks for stopping by to check on Devin. He is looking and feeling good and even talking about skiing!! He is trying to talk his dad into taking him so we will see.....his counts are good enough so we'll see.
Wednesday, December 15, 2004
Yesterday was a better day. More baking, but that was just fine. Our heat went out on Monday so the oven really heats up the house.
Yesterday Randy came home early from work to get the Christmas lights hung. Kara was quite the helper up there on the roof. Devin went with me to mail more packages. Luckily we didn't have much to mail through the post office. That place was a zoo!
The kids were begging to go to Archibalds for dinner last night. We did. They didn't eat much, but did enjoy looking around Gardner Village. It looks so pretty this time of year. All of the trees and little shops are just full of lights. It really seemed like Christmas walking around out there.
Devin found one display that had elves checking off names on the "naughty and nice" lists. His name was on the 'naughty' list and he was so mad. We couldn't find Kara's name anywhere, but we did find Chris and Kayla's for sure on the nice lists. I bet they will be relieved.
He is still asking me today if those were the official lists. I told him I didn't think so....I don't think there is any way he could land up on the naughty list.
Today we have been out messing around to avoid our cold house. The furnace guy just left and said he couldn't figure it out, so I've got another guy called to come out and look at it. I'm hoping it is nothing major, but it sure seems like it is heading that way.
Devin's counts came back good; within normal range yesterday. That was a relief. Hopefully they will stay there. It would be nice to have a healthy Christmas and avoid the hospital and clinic altogether. He's still off of all chemo. He qualifies, but the clinic is not calling me back about what meds to put him on...and what percentages. I got the counts from home health, but of course they just report numbers.
Thanks for stopping by to check on Devin. Please drop him a line and let him know you were here.
Tuesday, December 14, 2004
Yesterday was a better day here. We baked again all day. The kids would help for awhile, then find something more interesting to do. Fine with me. Sometimes too many cooks in the kitchen can be a little daunting.
Devin was feeling good yesterday. His color looks good so I'm hoping that means his counts are staying up. He hasn't had the neupogen in a few days so hopefully he hasn't dropped too much. Russ was out this morning to check labs so I should hear the results soon.
The kids are still sleeping in this morning. I am just enjoying the quiet. Yesterday they were full of energy and loud all day. They had Taylor over in the afternoon and they had fun running in and out of the house. Yesterday was nice and warm, 50's. Today I don't think it will get quite as warm.
Hopefully I can get the Christmas cards in the mail today. I had written a Christmas letter, but Randy all but set the thing on fire, so if you want news of our family you'll just have to get it here. No Christmas letter from us this year....just a picture of my cutie kids.
The kids and I made a pact last night to try and get dad in the Christmas spirit. Hopefully we can work on that today. It has been a little tense around here to say the least. He is still pretty upset about missing Hawaii. Hopefully some of the kids plans will work.
Thanks for stopping by to check on Devin. He appreciates your messages so please drop him a line and let him know you were here.
Monday, December 13, 2004
Its almost 2am here and I cannot sleep.....again. My friend Ann called me earlier to tell me that the kids were on the half-time show for the Jazz game tonight. Since I had missed them I stayed up later to see (and record)the re-play game. They showed Kara more than Dev, but they were both on TV. They will be so excited to see it in the morning!! What a nice surprise.
The kids had a good day yesterday. It was warm outside so they were able to play outside. Randy gave Casey a good combing and we all went for a walk. While we were out we saw Taylor and asked if his dad (Russ the nurse) was home. He was, so we went over to his house and Devin asked if he would de-access him.
Russ probably had a million other things to do, but cleaned up and came over. He let Taylor stay and play for a while. The kids had a lot of fun. Taylor is a year older than Devin and they get along really well. By the time Taylor was getting ready to leave they were talking about having a sleepover. Russ said we would have to see how Dev's counts looked when he comes over on Tuesday before they make any big plans.
Last night we walked over to Holly and Kevin's house to take Sam some of Kara's outgrown Christmas clothes. The kids played while Holly and I talked. We just stayed a little while and were on our way out when their oven caught fire. That was exciting and scary all at once. They were expecting company in a half hour so we brought the food over to my house to finish cooking.
Randy is really not much in the Christmas spirit since we had to cancel our vacation. The outside lights are not up and I just told the kids not to say another word about them. Evidently he is not in the mood to put them up. Today was a crappy day. Someone was mad or crying all day. It started early and basically went on all day. I hate days like this. I told myself Devin was in a bad mood because of the methotrexate then remembered he was not on any chemo. He just acts like he does when he is getting sick. We shall see.
We did get to run a few errands, then went to watch Sam and Harrison in their Christmas program. The kids were good for that. The church was packed and the program was only for preschool through 4th grade. I was glad we were able to go. It seems like last year we avoided any big crowd events.
Thanks for stopping by to check on Devin. Hopefully everyone will get a good night's sleep and be in better moods. Kara wants to do some more baking so I can almost bet that is what we will do. Seems like our December is full of baking. Please sign Devin’s guestbook and let him know you stopped.
Friday, December 10, 2004
Devin slept in today. Late. He woke up in a good mood and ate a little cereal. He just hasn't been eating much at all. Its not like he's not going to blow away or anything, just seems like he should be eating more to re-build his strength.
The counts are on the rise. Thanks to the neupagen he can go off the IV antibiotics and shots. He is glad about that. He is still off of chemo and will have counts re-checked next week. Clinic scheduled home health for Tuesday, but home health will probably come Monday because the line has been accessed since Monday. I don't know much about the port access guidelines, but Russ told me a week is the limit. If they truly want the labs done on Tuesday we will have to de-access him on Monday and re-access him for the draw. Seems like doing it all on Monday would be the best for Devin.
It was good to see Russ today. It seems like forever since he was here. He was always so fun to talk to and my real link to the 'outside world' for many, many months. Devin didn't even remember him coming to the house this morning. When he woke up and I told him that Russ had already come and gone he was disappointed.
The kids and I actually got some things done today. We got four boxes shipped off; some real progress. Its nice to feel like something is getting done. I had plans of getting EVERYTHING done before we were to leave on our trip on Saturday...but since the hospital visit we have gotten a little further behind each day. Thats ok, it all seems to wait for us. I'd just like to get things that need to be done, done so that I can sit down. Since this admission really shocked me into reality I feel like I have to get everything done....just in case. I am still in disbelief that he went six months away from the hospital. I honestly thought our admission days were over. I guess I was in denial, but it sure was nice for awhile to just be normal and just live each day like tomorrow was open for anything.
I re-located the Christmas cards this afternoon. I had picked them up last Friday with hopes of getting them mailed out by Monday. Hopefully I can get them in the mail tomorrow. Randy said he will go ahead and put up the Christmas lights since we will not be going to Hawaii as originally planned. That should be a big project. He usually will spend a whole day on the roof getting everything hooked up and going. It seems wierd to drive down our street and not have Christmas lights up....I'll be glad for him to get it done. The kids have been asking him every day when he is going to get 'his decorating' done.
Tonight was Kara's Christmas dance recital. She did such a great job. Randy's parents and our neighbors came to watch Kara. She loved having so many people there to watch her. Ann had brought over flowers and balloons for her this morning and Devin and dad brought her flowers too. She was feeling like quite the little princess. She looked so pretty up there dancing. She is good at remembering to smile too.
Randy told me on the way out that he had the video camera on pause...instead of record while she was dancing. We'll have to get a copy of her performance SOON before she asks to watch it. He was just sick about missing it. Funny how a couple of years ago that would have seemed like a major thing....now...no biggie. I'll have that picture of her dancing in my mind forever.
The kids are looking good and excited about Christmas. Devin picked up several packages and cards at his post office box this afternoon. We were so busy with dancing tonight that he hasn't even had a chance to open them. Tomorrow.....
Thanks for stopping by to check on Mr. Devin.........as always, he appreciates your messages so please do drop him a line.
Friday, December 10, 2004
Well, looks like I never got the site updated yesterday. Devin woke up feeling ok. He threw up a little, but I attributed that to coughing. He seemed ok after that. He's not eating much, but he'll eat when he's ready I suppose.
Yesterday the kids and I spent the whole day baking. We made sugar cookies, gingersnaps, peanut butter kiss cookies, stained glass cookies and a new recipe for a bar cookie. The kids really liked making the stained glass ones most of all. I kept them busy opening up little candies then busting them up for the inserts. They turned out really cute.
Last night we took the kids over to Randy's parents house so that we could go to the company Christmas party. We had a really nice dinner at Rivers and Randy even picked up a box of New Orleans pralines. The kids had a good time visiting with their grandparents and were tired and ready for bed (and IV) when we got home.
Russ came out this morning for the CBC. Devin woke up just long enough to say HI and went right back to sleep. I'm still waiting to hear how the labs look. Hopefully the counts are on the way UP. I don't like having his counts so low.
Today we are going to try and get packages mailed out that were supposed to be sent on Monday. We are just a few days behind here with the unexpected illness and hospitalization. The house looks like a tornado hit with unfinished projects in every room.
Kara is dancing tonight at her annual Christmas performance. She is really excited. It always surprises me how at ease she is up there dancing. She loves the crowds, the applause...and the flowers. She is certainly a girly girl. I'm glad. She is a lot of fun.
Please sign in and let Devin know you were here. Thanks
Thursday, December 9, 2004
Devin is still sleeping this morning. I've got Kara downstairs with me, so hopefully he will just keep sleeping and sleeping. He looked so tired last night, but stayed up fighting sleep. He just is so worn out. Dark circles under his eyes...color looks bad to me. I had forgotten how bad he can look when he is so sick......of course he is still beautiful, but it hurts to see your baby looking so sick.
It is nice to be home. It has been chaotic to say the least, but nice to be here. Our phone lines are messed so that is a mess. You can call in, I just can't call out. Wierd. I had to rearrange the refrigerator so we could fit 30 IVs in it. They've re-packaged those ball IVs and now it is the ball inside of what looks like a baby bottle. No pump is needed, but boy does it run slow and take up a lot of space in the fridge. Luckily they are in a giant ziploc bag all sealed up, because as soon as you open the bag the smell is overwhelming!!!!!
Devin is glad to be home. We have been getting all kinds of Christmas mail which is very uplifting. Lots of cards from people we don't hear from often. I received a card from my old boss now living in TX and found out they were in Shawnee the same time we were. Gosh I wish I had known. I would have loved to have seen them. I haven't seen them in many years. I don't know that they have ever seen Miss Kara in person.....and she is 6 years old!!!!
Last night I FINALLY took the time and ordered Devin's gold ribbon to be placed on the National Cancer Awareness Tree in Washington D.C.. Kara wanted to order one too, so he has two now. As Kara would say "it really warmed my heart to do that". If you get a chance you can order one in honor or memory of one (or all) of your kids fighting cancer. I just wish I could see that tree in person. It will be lit this Saturday.
www.candlelighters.org/tree
I'll update after Devin wakes up and gets moving.
Wednesday, December 8, 2004
We are home!! ANC is only 100....up from zero, but still dangerously low. The trip to Hawaii has been cancelled. Basically the dr's said that if we went that he would be spending his 'vacation' in the hospital as his counts would most likely drop again and fevers would start up. Doesn't sound like much fun, plus they said another hospital might not let him come home until his counts were up close to the normal range.
Devin is mad about the trip, but glad to be home. Still no snow here in SLC, but it is very cold and windy. We just got home in time to start up an IV on him. He will be on cefepime IVs every 8 hours until at least Friday. If we can keep him fever free he can stay away from the hospital until his clinic appointment on Friday.
He was sent home on a handful of antibiotics. He will be completely off of chemo until his counts are back up. It seems like we were totally caught off guard with this sickness and admission. I forgot what total hell it is to watch these kids. They all seem so happy even in the worst of situations.
Life goes on. It has to, but it seems so unfair to see all of these little kids up there fighting for their lives. Bald headed little girls masked up and riding bikes in the hall. Babies just old enough to walk around adjusting their masks as they pull wagons around the hall. It doesn't make any sense.
Dev was fine to be up there inpatient. He hadn't been in since June 1st so it wasn't quite so bad as last year's admissions. Everyone was excited to see him and tell him how good he looked. I think he was about the only kid up there with hair. Hair is quite the novelty in the ICS department. A few parents mistakenly thought he was a new diagnosis since he had hair.......I felt bad when their mouths dropped when I told them he had been doing this since September of 2003. One mom about fell over when I told her he was on maintenance and had been admitted for F&N. I could see the fear in her eyes. Geez...it is unfair. Her little cutie was hopefully going home today after 3 weeks up there. I didn't have the heart to tell her that I have met parents up there who have been doing this for YEARS.....here I am expecting to be informed, but keeping all the secrets to myself. I feel horrible.
Yesterday Kara spent the day with us up at the hospital. I told her it wouldn't be much fun, but I was wrong. The kids had a picnic in Devin's bed...the only thing missing were the ants. Child life came by and invited them to go downstairs to see the Jazz players and dancers. They were excited to do that. Devin really caught Jerry Sloan off guard when he went over to him and offered his condolences about his wife. I was shocked that Devin would remember, but it seems that little involving cancer gets past Devin. (Bobbye Sloan died of pancreatic cancer)
Anyway, Devin was mostly glad to see the Jazz Bear. He ran up to the Bear and hugged him. Bear picked him up and was hugging him. Devin said, "Do you remember me Bear?" The Bear shook his head like he did. He came to visit Devin last year while Devin was inpatient. I had never seen the Bear so quiet or subdued in my eleven years of living here.
Kara made quick friends with Matt Harpring (#15). She and Matt were working alongside the Jazz dancers making 'glitter hands' yesterday. By the time we finished up and got back to the room we were all covered in glitter. The kids both got lots of autographs, along with basketballs, posters and cars. They thought that was great fun.....a very nice deviation from the normal 'hospital stuff'.
After getting back to the room Devin was worn completely out. He and Kara got in bed and put the bed up as high as it could go and watched the Karate Kid. They looked so cute sitting up there...and were so nice to each other. It was a really good day. Kara was wiped out when dad came and picked her up to go home.
This morning, after hospital bingo, Devin found out the news of his trip. He was beyond mad. I explained to him that it wouldn't be much fun to be in Hawaii with your port accessed and round the clock IVs. He agreed to that, but still said it wasn't fair. I know its not. None of this crap is fair, but we make the best of it.
We were watching Little House on the Prairie last night when something rang very true for me. Pa said that the Lord gives you bad times so you can better recognize the good times. Yep, I believe it. Its the truth, but my gosh I wasn't expecting this. The discharge planner saw me in the hall and said she wasn't surprised........well, I sure was surprised. Why does no one ever tell you that just because your kid had good counts last week that every thing can go to hell in a handbasket so quick??? I know why....but my gosh it is frustrating. One day at a time.
Mike, the child life guy, hooked Dev up with some of those huge Incredible Hulk hands and let Devin pound out some of his anger. It seemed to help. Devin missed seeing Mike (aka Punk) yesterday so they made up for lost time and played Connect Four before we left for home. Devin just thinks Mike is so funny. He is. He is very good at his job and makes Dev feel like a million bucks.
Thanks for stopping by to check on Dev. Sorry there was no update earlier, but no internet access in the hospital last night or this am.
Monday, December 6, 2004
Not a good day.
Devin woke up around 8:30 this morning looking very bad. He can barely talk due to a sore throat and just feels miserable. After going to the bathroom he got back in bed where he started throwing up.....again and again and again. Bright orange....a color I haven't seen before.
I got ahold of Russ, our home health nurse, who was due at our house at 10am. He suggested calling clinic. Clinic wanted him up there straight away. I got him bathed and dressed....thank goodness for Kara as she was a tremendous help. Devin was too weak to do anything by himself so she was really good to help him out.
I called Randy and got him home to help. We ran Kara by Ann's house and headed up to clinic where they were waiting on us. I saw Dr. L in the hall and told him we were here to see HIM....no one else. Just him.
Anyway, Devin is weak and too worn out to complain that he is here. He was quickly accessed with tons of labs and cultures done. The main thing they were checking for: pancreatitis. Thank God that was negative.
Labs are HORRIBLE. ANC is only 100, down from 600 last Monday (and 2000 the week before). His WBC is .6....so basically nothing there either. Platelets are the only thing that look decent.
They have been running fluids in his since he has been here. Still has a slight fever, but they are going to allow him to go home as long as it stays under 101. Right now he is a little over 100. He is one sick kid. He just keeps falling asleep on us. Did get up once to use the bathroom. They've given him anzimet to stop the vomiting and just gave him an IV dose of rocephin as well. They are talking of starting him on neupogen to boost the WBC...we will be able to do that at home, as well as IVs. They want to give him another hour of fluids before they release him.
He doesn't care. He is sleeping through it all. He feels awful. He didn't even complain when they took the strep culture. We should get the results of it pretty soon.
Anyway, hopefully we will be out of here and on our way home in the next hour. Thanks for stopping by to check on Dev. Please keep him in your prayers as they try to figure out exactly what is going on in his body. Thanks.
UPDATE:
Dev was admitted this afternoon. He is still throwing up: first orange, then green, now orange again. He has been lethargic all day. He is sleeping again. He is not happy to be here, but honestly feels too bad to complain.
Thanks for checking in on Devin.
UPDATE: Tuesday, 12-07-04
Dev is feeling better today. Still not eating, but not throwing up. He got his nupagen shot last night...didn't care for that one bit. The nupagen SHOULD have boosted his white counts, but instead they have completely bottomed out.
His chest xray looks good, the RSV test they did last night was clear as well. They still don't know what is causing him to feel bad, but hopefully they will get it figured out soon.
Thanks for checking on Mr. Devin. Please sign his guestbook and let him know you stopped.
Sunday, December 5, 2004
Yesterday was a busy day around here. Devin and Kara had to take the second half of their ALPS test so we had the day split right down the middle.
Devin still thinks he is starving all the time. Luckily he finished his steroids yesterday morning and they should be out of his system soon. I do his steroids as a taper to try and avoid the major headaches. So far, it has been working. This round has been especially hard on him. He thinks and talks about food all the time; then never eats anything he thought he wanted. Frustrating and expensive.
I went to the grocery store last night after I discovered I only had about half of the things I needed for baking. My cart was heaped over with groceries. I went to one of my usual cashiers that knows me. She took one look at the cart and said, "Steroid week, huh?" Funny how they can figure out that he is on steroids when he isn't even with me. Seems like that cart held at least one of everything in the store, but when I brought it home Devin told me there was still NOTHING to eat. He finally settled on a box of croutons while the rest of us ate homemade pizza.
Anyway, the kids were in rare form yesterday. Not cooperating at all. A frustrating day. Anytime they got within 10 feet of each other they were fighting. Needless to say they weren't too much in a helping mood. Kara helped a little while I got the cranberry chip cookies done. She gave up by the time I was mixing up the peanut butter bars and seven layer bars. I guess she is holding out for the sugar cookies. She loves to roll and cut them out. She is good at it too.
Today I am hoping to get some major baking done. Devin is wanting gingersnaps. Somehow in all that grocery shopping I did last night I forgot the molasses, so it will be back to the store for me. I'm sure he'll need another box of croutons while I'm there too. Who would have guessed a kid could live off of croutons.....or even want to?? Chemo sure does some wierd things to your taste buds.
Thanks for stopping by to check on Mr. Devin. Besides a slight cold and an unsatisfied hunger he is doing just fine. Home health will be out in the morning to check labs again. He is hoping they send Russ, his usual nurse. Me too. We haven't talked to Russ in a long time and he just lives around the block from us.
We met a new diagnosis last night. His name is Daniel and he has the same diagnosis as Devin. Daniel lives in England. He is an adorable little guy. Please stop by and tell him HELLO. I'm sure his family would love to hear from you. www.caringbridge.org/europe/danielrochford
Thanks..
Friday, December 3, 2004
Another good day.
I took the kids out of school early so we could take Kara to dance. Dev was in a good mood when I picked them up, but quickly got in a bad mood when I told him for the hundreth time I wasn't stopping anywhere for lunch. These steroids have really been affecting him this time. The dosage was upped this week and he just thinks and talks about food all the time. Not eating that much...just talking.
Kara did a great job dancing. The teacher asked me tonight what I thought of the class performance. I told her I really didn't know because I was watching KARA only throughout the dance. She's the star for me. I'm sure all the girls did a great job. She has a good class again this year.
The kids talked dad into lighting the fireplace tonight and roasting marshmallows. They have blankets spread out all over the family room and have been performing circus acts all evening. The house looks like a tornado has hit, but boy have they been having fun. They have been complaining about how hot it is and are now asking dad to turn off the fireplace.....its the real deal so its not going out any time soon. I think they are afraid if they slow down to breathe that they will fall asleep. Sounds good to me.
Their Christmas vacation officially started today. No more school until January 3rd. I know the time will go by fast. We will be busy, busy until they go back. We are leaving for Hawaii next Saturday so I am going to try and get some major baking done this week. Hopefully my little elves will be in a helping mood.
Thanks for stopping by to check on Devin. He is looking and feeling good.
Friday, December 3, 2004
Dev had a great day yesterday. He took some money to school and bought gifts for everyone. He was so excited to do that. Kara bought another gift too. She told me the store was open last night from 5 - 7 and so we went shopping again. Boy does she love that store. There's just all kinds of miscellaneous stuff in it.
Devin worked himself all night last night doing homework. He hasn't been to school much since before the Pilot for a Day program so has had a lot of work to do. He didn't complain one little bit. He just kept plugging away. It is amazing to me how he seems to enjoy the little things in life; like homework. I guess after missing school last year he is just glad to be doing 'normal', kid stuff. Me too. I am just so proud of him.
Today they are getting out of school early again. Kara is dancing at the "Festival of Trees" at noon. She is so excited. Her dance is really pretty. I still don't know who sings the song she dances too, but it is really pretty too. Devin can't wait to see her up on stage. He loves to watch her dance. She loves it too. She'll have this performance today and another one on the 10th.
Everything seems to be going great around here. The kids are enjoying their advent calendars and wrapping Christmas gifts. We've got our Christmas cards in the works so hopefully we can get those in the mail soon. Things are coming together. We'll start baking this weekend and it will really look like Santa's workshop around here. We love Christmas!!!
Thanks for stopping by to check on Devin. He's feeling and looking good. He appreciates your messages so please drop him a line.
Thursday, December 2, 2004
Devin is trying school again this week. He seemed to be feeling a lot better this morning so I'm hoping he can make it all day.
Yesterday afternoon I took him to the chiropractor. That seemed to make a world of difference. It takes less than 15 minutes and he is feeling like a human again. The chiropractor said Dev was about a 1/4 inch off - sounds alot like the 1/4 inch he supposedly grew in the last week. Interesting.
Last night the kids cooperated (somewhat) to try and get a picture for our Christmas cards. Randy thought the experience was so funny that he got out the video camera. They were mad at each other most of the time I was taking pictures. They are best friends one minute and enemies the next. Funny kids.
I'm thinking the holiday season is bringing out the worst in everyone around here. This morning we heard some yelping and growling: turns out that Mr. Innocent Willie (the black lab) was attacking Mr. Neverdoneanythingwronginhislife Casey (the 12 year old retriever). I haven't seen Randy this mad....EVER!!! Willie has been walking around with his tail between his legs ever since. We sure didn't see that one coming. They usually get along really well. It sure makes me wonder what is going on with those two.
Everything else is pretty much status quo around here. Kara was excited to come home from school yesterday with the first gift for under the tree: a gift she bought for me at the school's store. She was thrilled. She took some more money today to buy more gifts for everyone. She conveniently forgot where her money is hid and 'borrowed' money from dad. Thats one way to save money for sure. She is so funny. Devin took money this morning (his own). He is excited to go shopping at Santa's Secret Shoppe.
Thanks for stopping by to check on Devin. He is feeling lots better. Hungry, but nothing sounds good to him. He'll figure it out before too long I'm sure. Between having a cold and chemo his tastebuds are really messed up.
Please leave Devin a message and let him know you stopped.
Wednesday, December 1, 2004
It's December!!! This year seems to have flown by. It seems like I just finished sending out Christmas cards and now the time is here again. I guess I should get busy.
Last night Devin started crying and begging me to let him go to school. I told him if he thought he felt good enough to go, then it would be fine. He was up and dressed this morning ready to go. Its always so exciting to see him get so excited. We are thrilled that he loves school so much.
I got a call around noon to pick him up. He wasn't feeling well. No fever, just achy all over. He says his back is really bothering him (thank you vincristine) so I've got him a chiropractor appointment this afternoon. That usually seems to get him feeling better.
He brought home a backpack full of homework. He hasn't been there since the 18th so I'm not surprised. Hopefully he will feel like working on it sometime soon. I don't want him to have to be doing it over Christmas break.
He's asleep on the couch now. I filled up his stomach and he went right to sleep. He looks more pale to me, but I know I'm just a bit (ok, alot) paranoid. The thought of him getting 'really sick' makes me so scared.
I'm still waiting to hear back from home health regarding the labs to be done on Monday. I would imagine the clinic isn't calling them back - go figure. Anyway, when I told the pharmacist the liver function tests she thought they were still too high. I think the clinic feels as long as your kid doesn't turn yellow that their liver tests are ok.
Thanks for stopping by to check on Mr. Devin. He appreciates your messages so please do take a minute and drop him a line. The guestbook has been consolidated again so it loads up speedy quick.
Tuesday, November 30, 2004
Yesterday was clinic and it was awful. I had cancelled the scans and after getting up to the hospital I was sure glad I did. Devin had woke up throwing up and just not feeling good. He did fine in the car up there, but as soon as he got out of the car he started throwing up again. He threw up five times before we made it to clinic.
Once in clinic his port was accessed by a nurse I had never seen before in my life. No introductions....she just started unpackaging everything up on the table, leaving no where for Devin to lie down. We got things moved and she accessed him. She only had one vial for blood and I questioned her about it. She said that he just needed a CBC: Wrong. We were supposed to get everything we had done last Monday re-done, plus the fasting glucose. News to her. She said she would consult the doctor.
Pretty soon a young and I do mean young 'dr' came into the room. Once again, there were no introductions. He asked me what tests I was wanting run and why. WHAT?? I explained the situation and asked him to read Devin's chart. Sure enough Dr. A. was kind enough to document what was going on when we were there last week. No one had taken the time to read it to see exactly what was supposed to be done.
Reluctantly this dr. agreed to get all of the blood work that Dr. A felt was necessary (along with the neurologist last week). He did an exam on Devin and asked some questions. Devin told him that he had been throwing up this morning and the dr. told him he thought he was 'faking it because he didn't want to come to clinic'. WHAT???? How in the hell does a kid 'fake throwing up'? I don't know. I would imagine if Devin was indeed faking it he could have done a better job and not covered himself in puke when he knew he had no extra clothes to change into. What a deal.
The dr., of course, knew nothing about Devin and wasn't really interested in having to read his chart to know what Devin's diagnosis is. Too much trouble I would imagine. I caught a glimpse of the dr's name badge and recognized the name: This was the same dr. who I had the privilege of speaking with back in the spring when Devin's central line was oozy when we uncovered it one night. This particular doc happened to be on call. I remember how he asked me if I thought the issue at hand 'was a problem'....well, of course I thought it was a problem or I wouldn't have wasted my time calling.
Anyway, to make a long story short I did not have a good feeling about this dr. First he basically tells my kid he's a liar, acts as though "I" am making up tests to be done....next screw up: He comes into the room and tells me that Devin has grown "since he was here last time". Devin hasn't grown in over an entire year and he supposedly grew a 1/4 inch since last Monday?????? That sure seems wierd to me. He refused to re-measure Devin and began to tell me about the "new" dosages of the "upped meds".
He begins telling me what the dosages will be. I am sitting there with my mouth open because the "upped dosages" he is telling me are LOWER than the current meds he is taking. I told him that I felt that was incorrect. NO. He's right and I'm wrong...plain and simple. I explain that if I am wrong that I have been wrong for months, with the entire oncology staff knowing exactly (probably not, but they should know) what dosages Devin has been taking since starting maintenance.
The doctor looks at me with his disgusted look and said, "Well, evidently you have been doing it wrong because this is what he should be on with ALL". WRONG AGAIN. Devin does not and never has had ALL (acute lymphoblastic lymphoma). He has NHL. Anyway, news flash for the disgusted doctor. He leaves the room to look up the CORRECT protocol.
Pretty soon, he comes back to tell me that Dev's meds are getting increased due to his 'growth', but due to counts they will be cut to 50% of the new dosages. ANC is only 600; down from 2000 last week. Looks like Devin wasn't faking the throwing up after all, looks like he is getting sick!!!!!!!!!!!!!!! No apologies, none expected. This is standard procedure. It sucks, but that is basically the way it goes.
The dr. tells me that vincristine will be held due to counts. I advise him that vincristine isn't held on Devin's protocol for low counts; only toxicity. He goes to double check. He comes back to tell me that Devin will indeed get the vincristine. Mom is right again.
I ask the dr. for a new roadmap. He tells me "it will be the same as the last two". I tell him I sure hope so. I don't need any more surprises today. He tells me I don't need it. I insist that I do. He gets the roadmap and comes back with most of the counts. Everything is dropping. The liver looks ok. Sugar is fine. They will call me with the thyroid function tests.
Once again I leave with more questions than answers. We are glad to leave and get out of there. The heat wasn't working in the clinic and it was beyond cold.
We came home so Dev could relax. He's not feeling good and just wants to be lazy. I can relate. The clinic visit was horrible. It wore us both out. I was too disgusted to update Dev's site. I do not understand why things can be so good one time and so crappy the next. I am totally floored by Devin's bad counts. I was not expecting that at all.
This morning he looks more pale to me. He woke up with mouth sores, but no throwing up. He hasn't eaten since Sunday night so I would imagine there is nothing in there to get rid of. He is playing with legos and watching Spongebob. Hopefully he will feel like eating something soon so I can start poking drugs in him. I hate to give them to him on an empty stomach.
School gets out for my kids on Friday (year round school), so I'm hoping he will feel better so he can go see his friends before the Christmas break. He hasn't been to school since November 18th due to all of the fun stuff he's got to do (Pilot for a day, seizure, Thanksgiving holiday trip and chemo) It could always be worse. I know. We've been there before. I just don't want to be there again. I was really getting used to having two healthy, happy kids.
Thanks so much for coming by to check on Devin. He appreciates your messages, so please drop him a line and let him know you were here.
Monday, November 29, 2004
Finally an update. We got home early Saturday afternoon to a very cold Salt Lake City. Quite a shocker from the warmer OK weather. Randy's dad picked us up at the airport and we headed home where our dogs were excited to see us home. Of course they are just like a couple of kids and the first thing they asked "Did you bring us anything?" Silly dogs.
Saturday was a very lazy day. We talked about getting Christmas stuff put up, but everyone was so tired we decided it could wait until another day. Kara took a long nap in the afternoon and still went to bed early with the rest of us. We were worn out. We had a busy time in Oklahoma.
We woke up yesterday to snow. It had started snowing on Saturday evening and snowed all night. We only got about 3 inches here. Its pretty, but it sure is cold. We got our Christmas decorations down and started decorating yesterday. We got the tree up and had to take a break to run Randy to the airport. He'll only be gone for a few days, so I bet we will be so busy we won't notice he's gone.
Kara will miss her daddy the most while he's away. She really has him wrapped around her little finger...make that her entire hand. She had him playing 'retro' Barbie yesterday morning with the old Barbie clothes that Grandma had sent home with her. They really had fun making fun of all my Barbie clothes. Barbie sure dressed more conservatively back in the 70's!!
Devin will miss his dad too, but he's got plenty to keep him busy. He has missed playing with all of his stuff while he was away. He was excited to come home from Oklahoma and see his gamecube was still in his room waiting for him. He is so funny. He likes to 'master' a game before he wants Randy to play against him.
Today is chemo day. Dev is supposed to get all of the blood work from last Monday repeated, plus a couple more blood tests done. We will get that done, but Randy and I have decided to put the scans on hold. They are not due until AFTER Christmas and thats when we want them done. I have no fear that they won't be good, but just not in the mood to do them with dad out of town. I'm sure the clinic won't be too happy about me cancelling scans at the last minute, but I bet they will get over it. I can almost bet they will quickly find somebody to take Devin's spot. That hospital is busy.
It is a cold 15 degrees here this morning. The high temp is only supposed to get to 25. Cold, cold, cold!! I'm sure the kids will balk at the idea of getting up and dressed, but Kara is ready to get back to school and see her friends. Devin's mad that he has chemo today and has to miss school. I told him if he gets through at the hospital in time maybe he could go for a little while. We'll see. He normally doesn't start feeling bad for a day or two after he gets the vincristine, but of course it is different every time.
Thanks for stopping to check on Devin. Please drop him a line and let him know you stopped.
Saturday, November 27, 2004 6:11 AM CST
We had another BUSY day yesterday.
After we got Devin up and dressed we headed for Tulsa. The kids were so excited to finally get to meet Boogie and his family. We met at Chuck E Cheese; had lunch and played lots of games. We all had a good time. By the time we left all of the kids were hot and worn out. They were so cute running around from game to game.
The Boogieman aka Dillion is a doll. He was just so much bigger in person that I had expected. He is so cute and sweet. We were all so glad to finally meet him and his cute family. His big brother Jake and sister Karen were full of smiles. They are all really cute kids. It seemed like we had all known each other forever. We just talked and talked until we had to get back on the road.
Our next stop was Henryetta to see Nanny one last time before heading back to Utah. She was really glad to see us. She seemed more 'with it' yesterday and when momma and I took her back to her room she was so sad. It must be so hard on her to be there when she understands where she is. Its hard to know where she needs to be when she has times she is so confused. Its a sad situation.
On the road again. This time our destination is PA. That's my dad's nickname for his farm. The kids just loved going out there. Besides the little Pookie dog being such an attraction, they think my dad is really funny too. He is. Kara was trying to talk grandpa into letting her have his dog, but no such luck. We'll just have to come back and visit.
Finally back into Shawnee where I am reminded that we haven't eaten since Chuck E Cheese. The kids insist on Braums. I thought they would order food, but nope, double scoop ice cream cones for dinner. They are going to miss Braums tonight when they're hungry for ice cream. We'll just have to come back for that too.
Its been a good trip. Of course, as usual, time went by way too fast. There is just never enough time to see everyone for as long as you would like, but we just feel lucky to be able to make the trip at all. It has been fun and we know we'll be back.
We've got an early flight back into SLC this morning. The kids are worn out so I'm hoping that maybe they'll sleep on the plane. That would certainly make the flight seem a lot shorter. I can almost bet they'll be wide eyed and ready to roll for the day. Too much excitement.
Thanks for stopping by to check on Devin.
Friday, November 26, 2004
Happy day after Thanksgiving.
We ate our turkey dinner over at my cousin, Tara's house. We had just about everything and it was all really good. My mom had baked a turkey and Tara had deep fried one. They were both really good. Needless to say there was plenty of food. I guess Devin wasn't much in an eating mood. He ate a hot roll and called it quits. No turkey for him. This makes two years in a row or him boycotting turkey.
It was fun to see all of the little cousins. They are all getting so big. All of the girls; Kara, Scottlyn and Emily are about the same height. Andrew and Devin are about the same height with Scotty just a little shorter. Tracy is really looking more like a teenager these days. It seems like all of the kids, except for the girls, were especially quiet. The girls all went upstairs and played barbies after we ate. All of the boys just sat around in a daze like they were really tired.
After we visited the cousins for a while we loaded up a plate and drove to Henryetta to see Nanny. She was really sleepy and out of it when we got there. Kara fed her Thanksgiving dinner. She seemed to enjoy it, but was having trouble knowing where she was and what was going on. We got her tummy filled up and took her back to her room for a nap. It was sad to see her in such sad shape.
Last night we took the kids to see the Spongebob movie. The kids just loved it. Devin ate a few peanut butter sandwiches before we left. He still wasn't interested in turkey. I told him he was missing out. It was all really good.
Today we are headed to Tulsa to meet our caringbridge friend, Boogie and his family. We are planning on meeting them for lunch. The kids are excited. Me too. We have been talking about meeting for a long time. After that we will stop back through Henryetta to see Nanny one last time before leaving Oklahoma. We leave early in the morning to go back to SLC.
I'm not ready to leave just yet, but we plan on coming back soon. Randy's got a trip planned on Sunday, Devin's got chemo on Monday and Kara and Devin have school. It will be a busy week. Its been a busy week. Fun, but busy.
Thanks for stopping by to check on Devin.
Wednesday, November 24, 2004
Another good, busy day.
When Devin finally woke up this morning we headed off to Seminole so the kids could go to the museum. They just love that place. I don't know what their favorite part was. Randy, Grandma and I liked the bubble department the best. They have it set up so you can pull the bubble up around you and stand in it. Pretty neat.
After the museum Devin was starving so we went to Braums and got some lunch and ice cream. Devin says he will eat at least a double dip every day we are in Oklahoma. I tried the pumpkin ice cream and it was really good.
A trip to Grandpa's farm was next. The kids checked out his motorhome and fought over who would carry the little dog around. Kara really, really likes the dog. The dog really, really likes Kara and her coat. She kept biting at the (fake) fur on Kara's coat. She's a funny little dog. They talked grandpa into singing for them again. They thought that was the funniest thing ever.
Devin and Randy went down to the pond and did some shooting. It was Devin's first time to shoot a gun and he thought that was pretty cool. No beaver sitings though. The only animal we saw, besides the dog, was a chicken...or maybe it was a turkey dressed in a chicken costume. Who knows.
Tonight we went and visited with our friend Marie and her family. The kids had fun playing and running around with the other kids. I can't believe how big all of the kids and grandkids are getting. Time seems to be going by fast.
There is talk to going to see the Spongebob movie after Thanksgiving dinner tomorrow. We will see. We are going over to my cousin's house for dinner. The kids are excited to see all of their cousins. We haven't been back to Oklahoma in over a year because of Devin's health problems so we are anxious to see everyone.
Thanks for stopping by to check on Devin. He is feeling and looking good. We are so thankful to be here and to have our two healthy kids with us. Hope you all have a great Thanksgiving and thanks to all of you for your love, support and prayers over the past year.
Tuesday, November 23, 2004
We're in Oklahoma!!
We got into OKC about noon. The kids were so excited to have grandma pick them up at the airport. We were all starving so we went to a really good Mexican restaurant and had some fajitas (Cocino de Mino). Devin didn't eat much. He likes to order food, just never seems to follow through and eat.
My family lives in Shawnee; which is about 30 miles east of OKC. First we stopped by to see Grandpa and meet his little dog. The kids just loved the dog. She is so much smaller than ours. She almost doesn't seem like a dog. Probably just weighs a couple of pounds. Kara would like to take her home and dress her up in doll clothes. Devin told her that Grandpa would miss her too much. I believe it. That dog is spoiled!! He was singing to her and the kids thought that was really funny.
Grandma's house was next. We got unpacked and the kids started exploring. Randy and I went out to run by Nanny's house and get her mail while the kids stayed with Grandma and Jeff. When we got home Grandma said that Devin had eaten 4 peanut butter sandwiches! We were only gone about a half hour. I guess he finally decided he was hungry. He didn't eat any lunch and he threw up what little breakfast he had before we boarded the plane.
This evening we drove to Henryetta to see Nanny. She seemed ok. A little confused, but my mom said she seems much better. That is good news. Nanny was so glad to see how well Devin looked. I know it made her feel good to see him looking so good. She said that Kara looked so tall and slim since last time she saw her.
After we got back into Shawnee we made a necessary stop at Braums. We don't have them in Utah, so the kids want to try and go every day while we are in town. Devin got a double dip of mint chocolate and Kara got cookie dough ice cream. Even though I'm not supposed to eat ice cream I ate part of a black walnut malt. It was so good.
It has been a fun day, but also very busy. The kids have about 100 things they want to do tomorrow. Grandpa has invited them to go fishing and beaver hunting if the weather cooperates. They also want to take dad over to Seminole to the Jasmine Moran Children's museum. They really like that place and we haven't been there in a year and a half. Of course, we still have lots of people to see. Always a lot to do. Its good to be here. I just feel so lucky to be doing 'normal' Thanksgiving type stuff. This time last year was just plain awful!!
Thanks for stopping by to check on Devin. He looks and feels good. He's glad to be in Oklahoma. I know the time will go by fast.
Happy Thanksgiving!!
Monday, November 22, 2004
We are home!!
Arrived at the clinic a little after 9 this morning. Randy had to carry Devin to the car. Dev fell asleep on the way to the hospital. He was able to walk with help into the clinic. The doctor assessed him and called for a neurology consult.
The neurologist did a complete exam on Dev in the oncology clinic. He said his exam was pretty good, but he wanted to see an EKG and an EEG, plus thyroid blood work, glucose blood work and liver enzymes.
The EKG was done in the clinic, then we were sent to the other clinic for the EEG. It took over an hour, but luckily both the EKG and EEG were normal...so nothing in his brain that shouldn't be. Great. We are relieved.
The neurologist does believe Devin had some type of seizure but doesn't understand why. He knows that Devin had an identified seizure back on 7-23-04 so they are looking at similarities between the two seizures.
The bloodwork is kindof iffy. The thyroid test came back wierd. When clinic called the lab to breakdown the throid function test they said they weren't sure if any of the thyroid tests were coming up correct. They want it re-done on Monday.
Right now, they said to keep an eye on him. He was feeling and looking good leaving the clinic. He told anyone who would listen that he is going to Oklahoma in the morning. I'm so glad they didn't find some reason to keep him from his trip. I'm nervous that we don't know what caused the seizure, but just glad there is nothing in his brain causing it.
He is to go back to clinic on Monday for chemo. We're not sure of the dosage since his liver enzymes were out of whack today. They will re-check his liver enzymes, thyroid, plus do a fasting glucose tolerance test. Basically the options are: some type of liver malfunction, sugar problem, thyroid problem or mystery ailment. Hopefully Monday will give us some answers.
They also scheduled his 3 month scans for Monday. He wasn't due until December, but evidently the CT department is taking NO appointments...just emergencies the entire month of December!! I find that hard to believe, but thats what I was told.
We are getting up and out of here bright and early in the morning. Our flight leaves at 8:30am and the kids are so excited. Me too. I just hope things continue to go well so we do get to go. I will try to update again when we get to my mom's house.
Thanks for the e-mails, messages and phone calls regarding Devin. Our family certainly appreciates all of the well wishes and prayers for our Devin.
Oh.....one last thing: I got a phone call Sunday evening from the PTA at the kids' school. Evidently Devin WON the literature portion of the "Reflections" contest for his poem. He was supposed to receive an award this morning at school, but instead he learned of his winning from his sister this afternoon. He got a really nice trophy plus a bag full of goodies. Cool. We are so proud of him.
Happy Thanksgiving Everyone!!
Monday, November 22, 2004
We had a good weekend. Devin and Kara took their ALPs test on Saturday afternoon, then Sunday Devin finished up his Native American tepee for school.
I guess all good things must come to an end. He was basically lethargic this morning, clammy and unresponsive. We are on our way to the clinic now. He falls asleep any chance he gets and is not himself. Crap!!! Here we go. He doesn't feel good enough to argue.
Please pray for Devin and all the caringbridge kids. Thanks.
Friday, November 19, 2004
Hello,
Devin had a great day!!
Devin earned his wings with the 34th Flight Squadron "Rude Rams", 388th Fighter Wing, Hill Air Force Base. We spent the day with the F-16 pilots of the 34th FS, including breakfast, lunch, and a Thanksgiving dinner.
This morning after Devin changed into his official US Air Force flight suit, we got an up close briefing on the F-16 fighter jet. That includes flight gear, engines, armory, etc.
Next, he was able to practice with the flight simulator and shoot down a couple of enemy jets. This was one of his favorite parts. Dad really wanted a try at the simulator too, but it was wish kids only.
After lunch, we had a personal air show. One of only three USAF demo pilot teams is stationed at Hill AFB. They do all the air shows for the western United States. They put on a great demonstration of the F-16, pushing it to the limit on each stunt with precision! After the show, the pilots let Devin check out the cockpit and presented him with a patch for his uniform and a flight team official coin.
The awards ceremony was also really cool for Devin and the four other make-a-wish kids participating. They each received framed picutes of themselves with the F-16, and a framed print of the F-16 with signatures of the entire squadron. To top it off, the Base commander showed up to present each of them with their pilot wings. Devin learned to stand at attention and salute for this ceremony.
Many thanks to the people of the 34th Fighter Squadron. They were truly generous with their time to spend with these kids. By the way, they will be going to Iraq in January. Best wishes for a safe and successful mission.
Dev had a truly unique experience today, and I was lucky to be a part of it. He came home with a car loaded with goodies; 2 framed pictures, 2 hats, air force bear, flight suit, certificate for earning his wings as well as a better understanding of how importance of air force pilots. For those in the SLC area, he should be on Fox 13 news at 9:00 Sunday night.
Thanks for checking in on Devin.
Thursday, November 18, 2004
Yesterday was a good day. While Devin and Kara were at school Randy and I went up to the bone marrow drive. I'm not sure about the turnout, but the place was pretty busy when we left. By 11:30 they had 30 people sign up. (it opened at 10am) The entire process of getting signed up is very easy!! You watch a short video, complete a questionnaire, then get a blood draw. I tell you, I really felt good when I left there. Maybe someday I can really help someone.
Last night was parent teacher conferences for both kiddos. Both of their teachers had nothing but nice things to say about them. Devin and Kara both made the honor roll!! Also, both of their teachers commented on their great spelling and math abilities, as well as their beautiful penmanship. I am so proud of my kids. Devin's teacher said at times Devin seems to have trouble focusing on an assignment, but once he gets re-directed he does great. She said it probably from being away from school so long.
Devin FINALLY talked his dad into getting a sword last night. It is mounted in a frame and is now hanging above his bed. Dev has been begging for a sword for several months and finally got his wish. He was so excited. He slept in his bed all night last night. Quite an accomplishment for him. Maybe the sword is keeping his bad dreams away. I hope so. I'd be willing to buy him another one if it will help with the bad dreams.
Its so funny. Devin, dad and Kara went to the cutlery store and looked at swords while I was in another store. I met up with them and Devin looked like he would cry because he couldn't get a sword. We had a long talk with Devin and talked about the rules of owning swords for the hundreth time. Devin agreed to them so we went and got the mounted sword. The salesclerk told him if he took the sword off of the frame when a grownup wasn't around that a silent alarm would go off and a man from the store would be by to pick it up. Devin really believed that story, so hopefully we will have no problems with the sword.
A hectic day in Oklahoma yesterday. Grandma said that Nanny has been having LOTS of problems. She was picked up quite a ways from her house out walking. Luckily a very nice man picked her up and took her to my aunt's house so she was not hurt, but it is very evident she is not thinking clearly. My mom and aunt took her to the doctor yesterday and he wanted her put in a geriatric evaluation center. It is in Henryetta, OK of all places. She will be there for 2 weeks, so she will be there while we are visiting Oklahoma. That will be different for sure, but hopefully they can get her medicines straightened out and get her to feeling better. Jeff is still in the hospital in OKC, so sounds like my mom will be busy running back and forth to check on them. I don't know when Jeff will be discharged. Who knows, maybe we'll have to visit both of them in the hospital. We shall see.
Today is my dad's birthday. The kids called him this morning, but he was already gone. He'll have a surprise singing of Happy Birthday on his answering machine when he gets home. We will take him his presents when we are in Oklahoma next week.
We have an exciting weekend of events coming up. Tonight is "Disney on Ice". We are going to meet Tuli and his family. The kids are so excited!!! Me too. Its going to be fun. Tomorrow is the "Pilot for a Day" program at Hill AFB. We will have to get into bed early tonight because we have to be in Ogden at 7:45 in the morning. Devin doesn't know everything that will go on...but let me tell you, he is going to be surprised!!!! I talked to one of the pilots last night and he told me just a little of what would happen. Wow...its going to be cool!!
Thanks so much for checking in on Mr. Devin. He loves reading his messages when he gets home from school, so please drop him a line and let him know you were here. He won't know you were here unless you sign in!!! Thanks.
Wednesday, November 17, 2004
Good Morning!!
We had a good afternoon/evening last night. The kids played around on their bikes and scooters while I raked leaves. Then we took the dogs on a little walk to the school playground behind us. Devin was worn out by the time we got home; pushing his bike.
After dad got home we loaded up "ELF" and watched it. Randy had never seen it and thought it was funny. Kara kept telling him what was going to happen next. She doesn't seem to understand about just watching a movie. I guess she was just excited that she 'knew' what would happen next and dad didn't.
Today is a big day in Utah. I've been meaning to post this on Devin's website for awhile and for whatever reason I keep getting sidetracked:
BONE MARROW DRIVE TODAY!!!
Host: The Gregg Schaub Donor Foundation
Place: University of Utah Union Ballroom (Olpin
Building)
Date: November 17, 2004
Time: 10 a.m. to 7 p.m.
Cost: free, but donations are always welcome.
The blood test does costs the foundation $60 per
person*. They do fund-raisers through the year to pay
for drive.
*Registration is free for the foundation for members
of any ethnic minority group, due to the need of bone
marrow donors from these groups.
Anyway, now you know what Randy and I will be doing while the kids are in school. Please, if you live in the Salt Lake area think about coming out for this. You may just save someone's life.
Thanks for checking in today. I've posted some new pictures in the photo album.
Tuesday, November 16, 2004
Yesterday was a good day. The kids both went to school all day and had a good time. I worked in Devin's classroom in the afternoon. After school we went to the school's book fair and the kids each picked out a new book. Devin picked out a Simpson's book and Kara got the new Junie B. Jones book. They were both excited to get in the car and read.
After homework we started baking cakes. The kids had decided they wanted to enter the pillsbury baking contest, so we made a cake in the shape of a bubble gum machine. It turned out really cute. We had a lot of fun doing in. Now I just need to get a picture printed to send in with the entry form.
The kids were in good moods this morning. They have caught their daddy's cold so they both have the sniffles, but they both went to school. About noon Devin called me and said he wasn't feeling so great. I've got him at home with me now and he seems pretty good. I think he is just worn out. He still tires very easily.
Thanks for stopping by to check on Devin. I'm planning on posting some new pictures soon.
Sunday, November 14, 2004
A good day. Dev woke up feeling good....and wanting to go shopping!! I couldn't believe it. Kara was in agreement too. I told them we would rake some leaves while we could, then go 'out'.
We raked for a couple of hours. We got the front cleaned up and the flower beds cleaned. Last year it never got done. Its nice to be able to do things like that again. We got several bags of leaves and pine needles out of the back. The garden is still too muddy to mess with right now. We just wanted to get as many leaves raked as possible before we got a big snowstorm.
After leaves, we collected all the aging bread out of the cabinets and went to feed the ducks. Devin and Kara were excited to have some geese eating right out of their hands. For some reason a lot of the birds were coming out in the 'people area' to talk. The kids thought that was great.
We went to Costco and picked up a few things; including a little sushi sampler. Kara and Randy are big sushi fans. I guess it wasn't too great as most of it landed up in the trash. We picked up some steaks on our way home and Randy grilled tonight.
The kids have been in great moods today. Devin says he is ready to get back to school in the morning. He misses it over the weekend, but its good for him to have a break.
Thanks for stopping by to check on Devin.
Sunday, November 14, 2004
Devin had a pretty good day yesterday. He and Randy decided to go golfing while Kara and I went to dancing. He said he had a great time. Randy let him drive the golf cart around. Devin loves that.
Kara and I went shopping with Holly and Sam in the late afternoon. We had a good time. The girls really enjoyed looking at all of the earrings and girly things at the mall.
Randy said that we hadn't been gone fifteen minutes when Devin started complaining of a horrible headache. He gave him a lortab and then Devin started throwing up. No fever. Randy said after that was done he went straight to bed.
About 10pm Devin woke up and ate part of a waffle. He had really bad tremors, but said his headache was gone. I have no idea why he gets those tremors, but they are bad. Close to impossible for him to hold a glass at all when they happen.
He said his headache was gone. Thats good. He drew for a little while, then went to back to sleep. Maybe its the methotrexate. I hope so. I hope he's not getting sick again.
He's still sleeping this morning. Kara is doing play-doh and Randy is fixing us some muffins. Hopefully the smell will entice Devin to get up and eat a little this morning. We will see.
Thanks for stopping by to check on Devin. He loves reading his messages, so please drop him a line.
Thursday, November 11, 2004
Another good day here. The kids both had a great day at school. Kara was really wound up when I picked them up. She talked about the 'farmer day' excitement until she finally went to sleep tonight. She is such a cutie.
Devin had a good day too. He decided to keep his poem short and not add the other stuff he had written. That is fine with me. It would probably be hard for people to believe an eight year old wrote it as it is. It seems like a pretty powerful poem for a little kid. Here it is:
THE FIGHT OF MY LIFE
By Devin Ross
I look in the mirror and what do I see?
An eight year old boy looking at me.
He's been through a lot this is true,
But wouldn't you fight if it happened to you?
The cancer was not welcome; not now, not then.
I gave up my life of school, fun and friends.
I was poked, prodded, drugged, scanned and radiated.
This was just the beginning of my fight of my life,
For my life.
Wouldn't you fight if it happened to you?
Thanks for stopping by to check on Mr. Devin. Please keep him and all of the other kids in your prayers. Good night.
SATURDAY, November 13, 2004
The kids had good days at school. I worked in Devin's class yesterday morning and he always likes that.
Randy came home late last night after being gone all week. The kids were past ready for their daddy to come home. They both were trying hard to get his undivided attention.
Last night was methotrexate night so Devin is sleeping in this morning. We used to always give it on Thursday nights, but changed it so he could go to school on Fridays feeling good. Fridays he has spelling and vocabulary tests so he needs to feel as well as he can.
Today we woke up to NO RAIN. Hopefully we won't see any this weekend and we can get some leaves raked. Our yard is full!! Kara's got a dance practice today at 1pm, so we will have to plan our day around that. Hopefully it won't last longer than an hour.
Thanks for stopping by to check on Devin.
Thursday, November 11, 2004
Devin and Kara were up bright and early to get ready for school this morning. They were both in really good moods. Devin worked a bit on his poem, but didn't quite get it finished. I'll be able to post it tomorrow.....it has to be turned in by then. What can I say, he's a procrastinator!!
Today Devin will get his spelling and vocabulary tests he missed last week. He was not really looking forward to that. Kara was excited because today she is going to be the 'farmer' for the class. This means she gets to bring a treat to share (she reminded me of this at 8pm last night) and bring her favorite book to read to the class (Spooky Tales to Shiver Your Spine) and something to 'show and tell'. She took her picture of herself with Junie B. Jones (star of the Junie B. Jones series) and her pregnant Barbie. She was so thrilled to be able to take all the stuff today.
Both kids were dressed in their red, white and blue for Veteran's Day. Kara advised me this morning that they 'are supposed to wear red, white and blue' today. This is after I had already ironed clothes that they picked out last night....I guess she didn't remember it then...maybe the flags out in the neighborhood jogged her memory. She is such a cutie.
Devin acts like he is feeling really good. He has been eating well, even though he is off of steroids. While he was sick with the cold he ate basically nothing. Its good to see him eating (and breathing) normally. That cough was horrible.
Seems like most of our caringbridge buddies can use some extra prayers today. Poor Jaxon is having problems again: www.caringbridge.com/mn/jaxon
Christopher is back in the hospital with problems. Chris has really been through alot in his life. He and Devin had the same kind of cancer so I feel a real bond with him: www.caringbridge.com/ca/christophersfight
Please keep all the kids in your thoughts and prayers. We can all use all the positive thoughts and prayers we can get.
Have a great day.
Wednesday, November 10, 2004
Good Morning!!
Devin landed up coming home early from school yesterday. I almost knew that he would. He woke up in a good mood, but was not walking right.....those kind of things usually get worse before they get better.
I got the phone call around noon to pick him up. He was complaining of sore legs, headache, stomachache....you name it. I called the chiro, but they couldn't get him in until after 3pm. We started driving home and Dev spotted another chiro office. We stopped and sure enough the dr. was able to see him right away!!! A world of difference in such a short time. As an added bonus this chiro. even accepts our insurance!!! What a deal.
Anyway, he spent the rest of the afternoon at home working on his poem and playing Gamecube. His poem is really taking some major effort on his part. He has written it a couple of times, but now has decided he wants it to 'go into the future'.....which actually got him down. He was wanting to write about being 'cancer free', but I explained to him that it will be 5 years AFTER he finishes all the chemo before he can actually claim that prize.
The poem is really good; at least I think so. Hopefully he can finish it today and get his final copy done. He told me I could post it on his website AFTER he gets it 'perfect'. Ok, ok...
Off to wake up some kiddos for school. Hopefully Devin's adjustment from yesterday is holding and he'll feel like taking on another school day. Thanks for stopping by. Please sign the guestbook and let him know you were here.
UPDATE: Devin did get up feeling good and is away at school today. He said he feels 'fine' and was anxious to get to school. Looks like maybe we will miss out on the rain today....the sun is out!!!
Monday, November 8, 2004
It was Monday all day here today. It just seemed like the whole day was wierd.
Devin was up and ready for school this morning. The cough is basically gone and he is feeling lots better. I gave him his cough medicine...just in case. He was excited to be going back to school.
I worked in Kara's class this afternoon. Boy is that an interesting group of kids. It is fun, but seems like there are so many VERY active, opinionated kids in the class....and they are 1st graders!! I had a migraine when I left. Wow. That teacher needs a pat on the back. They had a substitute today and I think she needed a couple pats on the back and some advil.
After school we ran by Target to get Dev's cough medicine refilled. It was supposed to be waiting for us, but the clinic never called it in. Finally, we got our drugs and were on our way. Devin picked up a book and read the entire time we were waiting for the drugs.
Dev is working on a poem for the "Hero" project. It is coming along pretty slow, but I'm sure he will get it done soon. Kara is still not sure of what she is doing, but wants to do 'something'.
Scary incident in our neighborhood this afternoon. Nothing ever 'happens' unless Randy happens to leave town. I was telling him about it when he called tonight....of course I didn't hear about it until the 10 o'clock news; thank goodness. I don't like bad things happening so close to my house.
Kids are both asleep now. Kara went out quick tonight. She played over at Harrison and Sam's while I took Dev to a therapy session tonight. He seemed fine with it. I'm glad. His mood and outlook on life is just so much better since he was able to start back to school. Hopefully tomorrow will be another good day for them both.
Thanks for checking in.
*** Our buddy, Micah and his twin sister are celebrating their birthdays November 9th. Please go and wish them a Happy, Happy Day!!
www.caringbridge.com/md/micahfriend
Sunday, November 7, 2004
Happy Sunday!!
The sun is out and its a beautiful day here in SLC. Devin's cough is just about gone with no signs of fever. He looks pretty pale, but is definetly feeling better. He is confident that he will be back in school tomorrow. I hope so.
We're off to a slow start today. Randy is packing to leave for Kentucky this afternoon, so both kids have been 'helping' him pack. Hopefully he will make it there with everything he needs...and then some. They always have these big ideas of dad swimming and playing around the entire time he is gone on trips. I thinks as long as he brings them a 'surprise' when he comes home they could care less what he is doing while he's away.
This will be our first time alone without dad and without grandma. I can almost bet we will get some major snow. I haven't heard any news, but usually our first BIG snowfall happens while dad is away. Before cancer Randy was gone ALOT. This will be his first big trip in a long time. Thank goodness our driveway isn't too big...and we have neighbors in all directions with snow blowers!!!
I talked to my mom this morning. She said Nanny is not doing well at all. I know it is past time to 'do something'. I was hoping to see Nanny in her own home while we were in OK, but it sounds like she will be getting moved into an assisted living facility. It will be a hard move, but one for the best. It is just not safe for her to be alone for so many hours and she detests having someone with her all hours of the day in her house. I feel so bad for my mom. This is hard for her to do. Hopefully her sister will help out in getting Nanny situated.
Only 16 more days until we leave for Oklahoma. The kids are so excited. Devin wants to take Uncle Jeff to see the new Spongebob movie that comes out on the 19th. I'm sure thats going to be a good movie. While Devin has been home sick he has watched the trailer for the movie no less than 20 times a day.....at maximum voiume I might add. Sounds like a great movie. Uncle, I hope you are prepared!!
Thanks for stopping by to check on Mr. Devin. Its all good here...and I'm hoping it stays that way. Dev's planning on school in the morning so we'll keep our fingers crossed this cough leaves him alone.
Saturday, November 6, 2004
I thought today would be better for Devin, but so far its not. He's been throwing up and still coughing lots. He still has a low grade temperature and is tired of being sick!! He told me yesterday that he "better feel better by Monday because he's tired of missing school". I know he is. Like so many of these kids, he just wants to be 'normal' and do normal things.
Not much is going on here. Devin is counting down the days until we leave for Oklahoma. He has some new recipes he has been working on for the big day. One is for some twice baked potatoes that sound really good. He does have a good imagination. He told me yesterday that he thought his recipes were better than Emerils because more people would like them. He just might be right. He is funny. He seems to have so much more confidence these days. I'm glad.
The kids are supposed to be working on 'Reflections' projects this weekend. Its an optional activity, but both are interested in participating. The theme is "A Different Kind of Hero". We'll see what they come up with and go from there.
Thanks for stopping by to check on Devin. Please leave him a message so he knows you were here.
Friday, November 5, 2004
Devin is feeling better. He is still running a low grade temperature, but better. The cough may be a little better, but not much. It still sounds horrible. At least he hasn't thrown up today. That continual throwing up is awful. It brings back too many horrible memories of last year when he would throw up time after time after time. Boy that ARA-C was some mean chemo. I'm so glad he is done with that!!
Devin has worked some on homework today and played his games. Nothing too exciting. If he gets to running around too much he starts coughing, so I'm trying to keep him pretty still. Not a problem. He doesn't have much energy; me either.
Kara is still fine. Hopefully she will not get this gunk that Dev has. She managed to stay healthy all winter last year so we are hoping for a repeat performance this year.
Thanks for stopping by to check on Devin.
Thursday, November 4, 2004
A quick update:
Devin was up basically all night last night. He had fever and started throwing up around 3am. I had to get him up at 8am to get dressed to take Kara to school. He was feeling awful. We came straight home and he started throwing up...and has been throwing up pretty much non-stop since.
I FINALLY got ahold of the clinic and they decided since he has a fever, throwing up, coughing horribly and hasn't been to pee in a while that 'they will see him'. I've emla-ed him up and am trying to get him re-dressed for the trip.
He is none to thrilled, but hopefully they can give him something IV to stop the throwing up and get him home soon. He hates being sick...
Wish us luck!!
UPDATE:
We are home!! They put Devin back in a room and started drawing blood for CBC, chemistries and cultures. The counts look VERY good....meaning they are HIGH and he is fighting an infection on his own!!
The dr. said he could hear crackling in his chest so Devin was sent down for a chest xray after he received a couple IVs for fluid...he was starting to get dehydrated.
The xray shows streaking in both lungs which I was told is usually a viral infection...not bacterial, so that is good. They gave Dev an rx for the cough syrup with the codeine in it....I had called and tried to get it yesterday without success.
So far, his throwing up is under control. He is weak..and not eating, but he is taking little sips of sprite. His stomach hurts and I'm sure it does; not only because of being hungry, but also from all the horrible coughing.
Hopefully the medicine will get him to feeling better soon. Thanks for stopping by to check on him.
Wednesday, November 3, 2004
Devin got up again with that hacking cough. It sounds horrible. He insisted on 'trying' school today. He made it until lunch, then called to come home. I think if he could stop coughing for 5 minutes he could feel ok, although he is saying his back and chest are hurting. He's probably hurting from all the coughing.
I've given him medicine, but it doesn't seem to do much. I thought it might at least make him sleepy, but no luck there either. He's just been reading books since he's been home and snacking on cheese crackers. The steroids have finally kicked in...took a few days, but he is eating again.
Not much else going on here. Just trying to get organized once again. Kara called this morning from school and said she needed her library book so I have been turning everything upside down looking for it. I'm still not convinced that it was ever brought home. Oh well, I'm sure it will turn up sooner or later and as an added bonus her room is clean!!
Thanks for stopping by to check on Devin. Other than a horrible cough/cold he is just fine. Mad he is missing school, but glad he can be home rather than the hospital. Hopefully he will not develop a fever and can stay home.
Tuesday, November 2, 2004
Election day!! The flags are out and the sun is shining. Its nice to see the sunshine. Almost all of our Halloween snow is history; we got 3 inches at our house on Sunday.
Devin is off to school again today. He has the most horrible sounding cough. He always gets a bad cough every winter...except for last winter; he wasn't exposed to anything or anyone. Pretty much at home or in the hospital hiding out from the world. What a life that was. I guess the return of the cough could be a sign of a return to normalcy....I just don't want it to turn into something else.
Devin and Kara were both eager to get up and get dressed for school today. Gosh I am glad. I wouldn't have been against it if he stayed home. His cough is just miserable. He's got a bag full of peppermints to try to keep it under control. He tells me they work much better than cough drops. I'm sure they do.
After school yesterday we went to the post office to pick up some 'royal mail' that the mail man had refused to deliver last week. (Our ferocious dog Casey had scared the mailman away) Devin was so impressed to get another cool new car book in the mail; make that a 'fastest cars in the world' book. He loves it!! Thanks R and K.
The kids came home from school to an empty house. Empty meaning grandma wasn't here. Boy was Devin mad. I guess he just thought she would jet out to OK for a few hours then come home. Wrong. He gave her a call and told her how much he missed her. Boy did he and grandma have a connection. The "Gramsters" and the "little ole boy". He is counting down the days to Thanksgiving.
He brought home a progress report yesterday. It was unbelievably good. We are so proud of him. You know, the truth is, the report could have shown horrible grades and I still would have been impressed. I'm just so thrilled with his 'get up and go' attitude. I often wonder how I would feel if I was taking handfuls of chemo drugs each and every day. Devin you're amazing.
Kara didn't bring home a progress report. Hopefully we'll see one this week. I'm sure she is doing a good job in first grade. I know that she loves it and can't wait to get there every day. The school is great. Lots of stuff going on and lots to be excited about. We are so grateful that they are there and enjoying it so much.
Thanks for keeping our Devin in your thoughts and prayers. Luckily we have nothing but good news to report. We are so lucky. We know we are. Thank you for your support.
Monday, November 1, 2004
Its very quiet here today. The kids are at school and I am all alone. Its been forever since I've been home alone and it seems wierd. I've been checking on kiddos this morning. So many kids in such sad shape. Its amazing the fight the kids put up just to live. They are all such amazing people. Wise beyond their years. Amazing.
Connor has joined Cheyenne in Heaven. I just read on his website that he passed. What special kids these are. What a fight they put up with such dignity and grace. They made cancer appear to be something they just 'dealt with'. This cancer stuff is so unfair. Please pray for these families as they face burying their babies this week. Its something no parents should have to do.
Devin and Kara both woke up in great moods this morning, ready to tackle the day. Devin still has his cold, but insisted he felt good enough to go to school. I don't think much of anything will keep him away from his buddies in 3rd grade. He loves everything about it. I am so glad. We are so lucky. We are thankful for each uneventful day that allows Devin to live a 'normal' life. So many kids are not so lucky.
Grandma is home safe and sound. She is now checking on kiddos from Shawnee, America. The safety and well-being of these caringbridge children is addictive. When they hurt, we hurt. It is amazing how many wonderful people that caringbridge and cancer have led us to.
Thanks to every single person who visits Mr. Devin; the ones who never sign and the ones that do. We appreciate all of you. We can feel your love for our son through this website. Even the simplest, "HI" or "thinking of you" can make a child feel special and loved. Thanks. Please hug your kiddos today and let them know you love them.
Sunday, October 31, 2004
Yesterday was a hard day. Today is a hard day. Devin is doing pretty good; has a serious cold, but seems good. Grandma is leaving us this evening to go back to Oklahoma. I know the time has come, but I'm sure gonna miss her like crazy. I don't know how we would have come this far without her. It has been so nice to have her here, making sure things got done when things were so bad.
It seems the first ten months or so of her being here are a total blur. It was no fun, bearable.....because she made it so. So many times I felt like the load was too heavy, but she was there; helping me wash mountains of laundry that Devin had thrown up on, running to the grocery store for some obsolete item that Devin just had to have (then didn't eat), making sure Kara was taken care of, answering the phone and telling updates to whoever called....even if it meant re-telling details 50 times...this was before we discovered caringbridge. She truly has kept our family together.
I miss her already and she is not even gone. Devin has written her two letters this morning asking when she'll be back. He keeps saying she will be back when Nanny is better. I think she will be back then too, but the truth is Nanny is getting older and weaker with each passing day. I know my mom needs to be with her and I am just so grateful that she was able to spend the past thirteen months with us. It is wierd the way things work out. She certainly didn't plan on it, but every time she was scheduled to go home Devin would land up in the hospital, again.
Mom, from the bottom of my heart, thank you. Thank you, thank you, thank you. I'll love you forever, I'll like you for always, as long as I'm living my mommy you'll be. We will see you in 3 weeks for Thanksgiving!!!!!
Friday, October 29, 2004
Today's clinic visit turned out to be a good one. The kids wore costumes up to the hospital in hopes of getting some treats. It worked. Before we left they each had a bag of goodies.
Devin's counts were really good. His ANC is 1700. This is as high as its been in over a year; except for a few times when it was high due to neupogen. This is all on his own. I was impressed. Platelets are good too.
Chemistries were done and all was good there too.
He saw Dr. L. today. He seems to think Devin may have a sinus infection so he put him on some augmentin. Devin has been throwing up a lot and his face is still really puffy. Anyway, we will try this antibiotic and see if it helps. He took his first dose tonight.
EVERYONE at the hospital was commenting on how good Dev looked (and how pretty Kara looked). We saw Mike, the child life guy before we went into clinic and he and Devin were playing around out in the hall. All the clinic nurses were impressed with Dev's energy and smile today. You can just tell he is feeling so much better.
After the vincristine (75% dose; still foot flap), we went upstairs to ICS to see Mike again. We saw a lot of nurses we knew; including Joyce who was dressed in a prison outfit as Martha Stewart. I thought that was too funny. Devin asked her where her cupcake was....he keeps hearing that they call Martha's prison "Camp Cupcake".
Tonight my mom watched the kiddos while Randy and I went out for our anniversary dinner. We went out to a Mexican place that the kids don't really like and they had pizza at home. My mom said the kids were really good for her. They ate pizza then watched Ghostbusters together. They love that show. I remember when Devin was in first grade he wanted to watch it ALL the time!! We were even the Ghostbuster family for Halloween....all except for Kara; she always wants to be something pretty.
All in all its been a good day. The weather is still cold and rainy, but the forecast is for NO rain tomorrow. Just cold. I'm sure not much of anything will stop these kids from trick or treating tomorrow night. They are excited!! I'm excited too. Last year was just horrible. Several of the nurses commented on how much better he looked this year than last....like a different kid!!! He is. We are so thankful to have our Devin back.
Thanks so much for checking on Devin. He appreciates your messages so please drop him a line to let him know you were here.
Thursday, October 28, 2004
****NEW PICTURES****
Its been a long day.
The kids spent most of the day playing with Nicholas and Matthew. Devin and Nicholas played really well together, while Kara enjoyed being Ann's shadow and taking care of baby Matthew. They just acted like they had a great time. Ann fed them all pizza for lunch and they really liked that too.
The funeral service for Randy's Grandma Young was so nice. It was just so well done. Several family members spoke and just gave such eloquent speeches. She was such a nice, nice lady. Always so loving and caring. I know Grandpa Young will have a hard time adjusting to her being gone from this earth. November 20th would have been their 75th Wedding Anniversary.
Tonight we are just relaxing. All of the adults seem pretty worn out. I had big plans of coming home and getting some more Halloween cookies baked, but I'm tired too. Hopefully tomorrow we will get something done besides chemo. His appointment is 11:30 in the morning. Time once again for the dreaded vincristine.
I've FINALLY added some new pictures in the photo album. I haven't been very good at that lately..so hopefully I will be better in the future about getting recent pictures posted.
Got a call tonight that Mr. Boogie is out of the hospital. That is good for him. Its always nice to be able to sleep in your own bed; for the kid and the parents. Thinking back to all of Devin's time in the hospital last year is just a horrible memory. It is just so true that there is no place like home!
Off to check on some of our caringbridge buddies. Thanks so much for checking on Mr. Devin and keeping him in your thoughts and prayers.
Thursday, October 28, 2004
Good Morning.
Devin made it to school yesterday for the Halloween party and parade. I don't think he would have missed it for anything. He just amazes me the way he keeps going and going. I bet he will be sleeping a lot while he is out of school these four days.
He woke up with some congestion and took some meds; which he promptly threw up. It didn't deter him though, he just wiped himself off and was ready to go. This makes me remember all of those months prior to being diagnosed that he would get up, get dressed, eat breakfast...throw it up and be ready still to go to school. All of the time (months) the doctor said that was 'normal'. I still can't believe that we went along with that doctor for so long. Never again will I be so trusting.
He's sleeping in today. I'll have to wake him up soon to get dressed. He and Kara are going to play with Nicholas and Matthew while the grown ups go to the funeral. I am so not looking forward to this, but you know, her time had come. We will pick the kids up after the service so they can meet all of Randy's cousins he hasn't seen in years.
Thankfully there is nothing of any real significance to report here. Compared to last year I feel we are living on the top of the world. For the most part Devin is feeling good and looks good. We are so fortunate to have this little miracle here with us. I can't imagine how Connor's family is dealing right now. They are strong people. Kody too. It is heartbreaking to read about these kids that just aren't doing so well. Hopefully today will be a good day for them all.
www.caringbridge.com/tn/connorhunley
www.caringbridge.com/fl/kodysstory
www.ourboogieman.com
www.caringbridge.com/mn/jaxon
Thanks for stopping
Tuesday, October 26, 2004
An interesting day.
Devin got up in a good mood and went to school with Kara. While the kids were busy at school my mom and I tried to finish up the Christmas shopping. I think the kids stuff is done. I hope its done. She's got hers done anyway so she won't have to worry about shipping stuff back out to Utah.
My mom and I had a fun day shopping and going to lunch together. It seems like even though she has been here over a year we haven't had much time just to go and do something. Since Devin has been in school we have been taking advantage of the time and doing some fun things together. I am sure going to miss her when she leaves. Every time I think about it I just want to cry.
Devin was mad at me when I picked him up from school. He said he didn't want to be 'picked up so early'. He wants to stay and talk with some kids after school and evidently me showing up right after school is cramping his style. I told him I would try to remember to be a 'little late' from now on. He is funny. Just loving school and every single thing about it. I am so glad.
On the way home I ran by and picked up some pictures from Sams Club. Devin was fine and even walked in the store with me. On the way out he was slouching over and saying he felt awful. By the time we got to the car he was in dire pain and said he felt like he would throw up. Sure enough he did. All over himself and the car. He was holding his bookreport which was made out of a shoe box, so I told him to open it up and finish up there. What a mess. So much for his book report, but he was done with it, so I guess thats ok.
He came home and changed clothes and got into bed. He had asked Grandma to make him ham, mashed potatoes, gravy, corn and rolls for dinner, so of course she did. He ate a few bites. Not much. He was still saying his stomach hurt. He did enjoy having dad home to eat dinner with us. Even though he didn't eat much he still enjoyed spending time with all of us talking about how much we are all going to miss grandma.
Tonight he seemed better and even went out with Randy and Kara to walk the dogs. After he got out of the bath I thought he looked flushed. I took his temperature and it is 100.4 now. After I took it I also remembered I had given him lortab, which contains tylenol, not so long ago....so I'm thinking his actual temp. might be higher than 100.4.
Anyway, we will keep an eye on him tonight and see what happens. We're not sure of his counts since the last CBC was done at his last chemo last month. Since that time he has been to school most days and probably exposed to anything and everything. It is scary to think he might be getting sick. He's tired of being sick. If he has a fever and can't go tomorrow to the Halloween parade and party he will be furious!!!
I don't know what to think. On good days I am extremely paranoid about him getting sick.....I'm not ready for it. I know I have probably been taking all of these good days for granted, but I'm just not ready for him to get sick.
Hoping that tomorrow is a better day for Devin and all of the other kids that aren't feeling so great. Poor Dillion is in the hospital again www.ourboogieman.com
Jaxon isn't feeling good www.caringbridge.com/mn/jaxon
Connor of course; www.caringbridge.com/tn/connorhunley
Christopher www.caringbridge.com/ca/christophersfight
Anyway, thanks for stopping. Tomorrow is another day.
Tuesday, October 26, 2004
Devin has gone off to school this morning. He's got a bit of a cold this morning, but other than that said he was 'fine'. He was excited to go back even though he didn't want to get up this morning. He is just not a morning person. Me either. I told him I would much rather sleep in too.
Its cold here again today. It snowed all day here yesterday. It was all gone by 4pm or so, but it sure was a cold mess. The yard is full of wet leaves. It is a mess. Hopefully it will dry up soon and I will get some energy and get it all cleaned up before we get more snow.
It seems like all the kids I have checked on are having a rough week. I am just glad Devin was able to go to school. This time last year it just couldn't happen. He has come a long way.
Thanks for stopping by. Please let Devin know you stopped and leave him a message.
www.ourboogieman.com Dillion's site
www.caringbridge.com/mn/jaxon Jaxon and Robin's site
Monday, October 25, 2004
Well, Devin didn't make it to school this morning. He just wasn't feeling so good. I talked to the nurse up at the clinic and she wants to wait a couple more days until they do any cultures. It seems it is always a waiting game. Hopefully he will feel good enough to go to school tomorrow. He is mad that he had to miss.
Today is cold here in Utah. It started snowing early this morning and has snowed lightly all day. Devin was wondering if we could build a snow man, but there just isn't that much snow. Too cold anyway. I'm really not looking forward to winter weather.
We got a call yesterday morning that Randy's Grandma Young had passed away. She was such a sweet lady. Her funeral will be on Thursday. I called this morning and got Devin's chemo re-scheduled for Friday. The kids won't be going to the funeral, but the clinic appointment just won't work on that day.
Not much else going on here. Just hoping that Devin has some get up and go soon. Ever since he started to school he just doesn't want to miss.
I just got an email from Dillion's mom and the boogieman is sick. If you have a minute please go and offer them some support. www.ourboogiman.com
Thanks.
Sunday, October 24, 2004
Devin slept in yesterday, but was feeling good when he did finally get up and moving. He definetly was excited to go to the party. After eating some lunch, the kids got their costumes on and we headed up to the party.
Kara got lots of compliments on her costume. She did really look cute. Devin, being in his ninja costume, was pretty much incognito. Except for the name tag that I had stuck on his back no one knew who he was. Thats the way he liked it. I guess it adds to the costume.
The kids decorated trick or treat buckets, played games and watched a magician at the party. Their favorite part was the magician. He was really good and had several of the kids; including Devin, helping with the magic. Devin thought that was the coolest thing.
Devin's trick was taking shreds of paper and making it into one piece. Needless to say he could use some more practice. Our friend Tuli got to be a helper too. His trick was turning some hankerchiefs and an old sock into a bunny!! The kids were amazed. Kara and Devin kept trying to get Tuli to tell them how he did it, but he kept that secret to himself.
As we were driving home Devin decided he wanted some seafood for dinner. I told him to call and ask dad. Of course, dad said yes, so we met dad up at Red Lobster. Devin ate nothing. I say nothing, I mean nothing but the croutons off of my salad. His food arrived and he picked around at it, leaving it for dad to finish. Part way through dinner he put his head down and just started looking so pale.
Back at home Devin wasn't feeling good at all. He was having a major stomachache. I don't know what is going on with his stomach, but something is. He spends most evenings with horrible stomach pains.
We changed his meds a few weeks ago, but I'm thinking he needs something different. Of course this worries me to death and probably explains why I couldn't sleep. It just seems like any little thing prompts me to think of the big picture. Hopefully its nothing but an upset stomach.
The rain didn't stay away too long. It started raining again yesterday afternoon and is still raining this morning. Looks like another dreary, cold day in SLC. Randy is still putting in lots of hours studying so I'm sure we won't see much of him until after his test on Tuesday. I know he will be glad to have that over with for another six months.
Grandma got a ticket earlier this week to fly back next Sunday. I don't think the kids really believe she is going. Neither of them act as though she will be gone long. Hopefully we will see her in Oklahoma over Thanksgiving.
I'm going to work on getting us some plane tickets today. We have a bunch of Delta frequent flier miles that we would like to try and use...for more than one reason. We haven't been back to Oklahoma since before Devin was diagnosed. The kids are really wanting to see everyone; especially Nanny (grandma's mom). She has really been worried about Devin. I think it will be good for her to be able to see him and know that he is doing well.
Thanks for stopping by to check on Devin. He loves reading his messages, so please drop him a line and let him know you stopped.
Saturday, October 23, 2004
Another try at an update:
It is windy, windy, windy here today. No rain; yet, but very windy. The dogs are in the garage. They said its too cold and windy to be outside.
We got a break from the rain yesterday and FINALLY saw the sun. I think it was the first time we actually had sunshine in a week. It was a nice break. I would imagine it will be raining here today, if not snowing. Its cold out there.
Devin is still sleeping this morning. It seems like after he has gone to school all week he is just exhausted. He sleeps an extra amount over the weekends, but that is just fine. It is too windy to be outside today. On a day like today I wish I didn't have a fenced yard so my leaves would blow far, far away.
We didn't land up going to the school carnival last night. Kara had dancing until almost seven and Devin's back had started hurting him. The kids were fine with not going. Devin just didn't feel good at all last night. I don't know what got his back started hurting; possibly the 'ninja moves' he has been practicing every night. Anyway, it was a three pain pill kind of day.
Today is the Candlelighters Halloween party. I'm hoping that Devin feels like going. All of the Candlelighters stuff is so nice for the kids. You see kids in all stages of treatment; plus some off of treatment and its just nice. Kara really is wanting to go so I hope it will work out that he feels good.
Thanks for stopping by to check on Devin. He really appreciates your kind messages you leave in the guestbook. If you have a moment, Devin's friend, Connor, has an upcoming birthday and is collecting cards. Connor is not doing so well and can use all the prayers and support he can get right now.
www.caringbridge.com/tn/connorhunley
Friday, October 22, 2004
Happy Friday!!!
We have been having real weekends around here and it is just so cool!!! For over a year it seemed we were so busy with hospital, clinic and treatments that one day just pushed right into another. The kids both get out of school early today and are excited to go to a Halloween carnival at the school behind us later tonight.
Both kids were up and about ready to go this morning. Both excited to be going to school. It makes me so happy to see them enjoying it so much. Devin was ready to take on the world. Its so nice to see him smiling and happy.
No news but good news here. We've got a busy weekend planned with Devin finishing up his mystery book report for school, the Candlelighters party and the carnival tonight. The kids are excited. If the rain will stay away there is a chance we'll finally make it to the corn maze too. Lots of excitement in the air!!!
I found Kara the cutest costume last night when I ran in Albertsons. It is one of the inflatable ones that is a unicorn. She stands in it and it looks like a princess riding a beautiful unicorn. She loves it. It is really cool and different from anything else I have seen. Devin was wanting to try it on, but it was almost too small for Kara. It surprised me that it was so small. The box said it was for a child of any size and she is just an average little six year old girl....size wise that is!!
Thanks for stopping by to check on Mr. Devin. He LOVES coming home from school and checking all of his messages. It sure makes him feel good to know that so many people have him in their thoughts and prayers. Keep up the good work guys. It is most appreciated.
Have a great day and please, please, please sign Dev's guestbook and let him know you were here.
Thursday, October 21, 2004
Good morning!! The rain has finally stopped, but it is cold here in Utah. The kids are off to school again today. They both insisted on taking their lunch today. They weren't in the mood for pork dinner......good thing, because I am fixing a pork roast for dinner tonight.
We got rained out on the corn maze last night, but we did go out for pizza. Hopefully the rain will stay away and we can go some other day soon. The kids are wanting to go and take Harrison and Samantha. It should be fun. The kids have been having fun 'haunting' Harrison and Sam for the past couple of weeks.
Devin is really excited about Halloween this year. He has been putting on his ninja costume almost every night. It is looking pretty ragged already. I bought him a new one to wear for his Halloween parties and trick or treat. The first one just won't last through the end of the month.
Not much else is going on at our house. Devin is working on a mystery book report that is due next Monday. I'm hoping he gets it done before the weekend. I tell you, since this cancer diagnosis there just arent' too many things I will put off at all. (except for cleaning the office; this thing is a mess!)
Thanks for stopping by to check on Devin. At his request I have changed his vincristine appointment to next Thursday, the 28th. The kids are out for teacher's meetings then. Please sign in and let Devin know you were here!! Have a great day.
Wednesday, October 20, 2004
Its COLD here today. Rainy and wet. At least its not snowing. I'm not ready for snow just yet. The kids are wanting it to snow on Halloween again this year. I reminded Kara that she only went to two houses last year because she got too cold. She decided snow on Halloween wasn't such a good idea after all.
Devin had another good day at school yesterday and is off to school again today. It is such a good feeling to see him doing so well. I was thinking this morning as I drove the kids to school how different things are since this time last year. We certainly have a lot to be thankful for!!!!!! Every time I look at these kids I realize what a miracle they really are.
I felt like last year we were wading through the pits of hell and today just seems pretty much like a 'before-cancer' type of day. Its amazing the changes that have occurred. Not only has Devin amazed us with his physical strength, but he just seems so darn happy just to be alive!! I know the feeling. It seemed like this time last year that just anything could happen. Now it seems like anything could happen, but ONLY GOOD THINGS. I'd like to think that it will be good from here on out.
I've got his chemo appointment scheduled for next Tuesday. He said he would NOT miss school for chemo. I couldn't believe it!! Nope, not missing school for chemo. I'll have to re-schedule. This school business is serious. It is just so cute. He's just so cute and serious about it all.
I'll see if I can re-schedule for Thursday. The kids will be out on Thursday and Friday of next week for teacher's meetings; plus Randy wants to go and he has his big test on Tuesday. I am so looking forward to him being done with his exams. He's a year off schedule due to Devin's cancer diagnosis, but its so worth it to have Devin in remission.
Thanks for stopping by to check on Mr. Devin. He really enjoys reading his messages. He still checks them when he gets in from school before he gets into his homework. Thanks to all of our new friends for signing in from Allie's Angels. He enjoys any and all messages.
Tuesday, October 19, 2004
Devin went to school all day again yesterday. He was in a good mood when I picked him up. Kara said she had a fun day too. I'm so glad that school is going so well.
After school we stopped by a pumpkin patch and looked at pumpkins. The kids picked out 2 each and then I asked the guy how much I owed. I about fell over when he told me the price, so the kids kept the smaller $1 pumpkins and we were on our way. We'll have to make another stop at Albertsons where the pumpkins are more in my price range. Mainly I just wanted to go to the pumpkin patch for some fallish pictures. We did get that done.
We got home and Devin and Kara were both thrilled to get some mail from their preschool pen pals. Cute Halloween pillows for each of them. Boy, those kids sure are thoughtful!! These pillows look so cute with the adorable pillows they received in the mail last week. Our house really looks like Halloween town now.
Devin's legs and back were hurting him last night. I gave him some pain meds with a snack and he went to bed. He complained of freezing and such. Finally I talked him into taking a warm bath and that really seemed to help.
I'm not sure what today will bring as he was up many times in the night with tummy troubles. We shall see. I do know that he doesn't want to miss school. Even after feeling so lousy last night he insisted on staying up to finish his homework: a really cool looking map of South America.
Thanks for stopping by to check on Mr. Devin. Please keep him and all of the other caringbridge kids in your prayers.
Monday, October 18, 2004
The kids are off to school this morning. It is so nice for them both to be doing 'normal' kid things. Its chilly and wet here this morning. It really looks like fall.
Devin was so excited to be going back to school today. He was so excited that he had trouble falling to sleep last night and was up bright and early this morning. I bet he will be one tired kid before the day is over.
This weekend was pretty uneventful. We are having trouble with the Maxima again. We took it by Sears and got yet another battery, then took it up to the dealership. There has got to be some kind of electrical problem to keep draining batteries. Anyway, as soon as we get the kinks worked out Uncle Jeff will be flying out then helping grandma drive it home.
I still can't believe my mom has been here over a year. What a sacrifice she has made for us; basically putting her life on hold to hold our hand through this whole nightmare. Seems like every time she was scheduled to go home Devin would land up back in the hospital. What a difficult year it was. I am so glad we are on the other side of that.
We are going to miss her like crazy. I think the kids are in denial that she is really leaving. I know I am. Nanny is not doing well and really needs her now. I am hoping to get the kids out to Oklahoma to see their great grandma and cousins sometime soon. We haven't been back in over a year!!! This is the longest I have ever gone since living in Utah. Its wierd.
Thanks for the prayers for Devin and all of the other caringbridge kids. We appreciate each and every one of them. Please drop Devin a line and let him know you stopped.
Saturday, October 16, 2004
He did it!! He made it to school each and every day this week. He is really enjoying it. The feeling of seeing him so happy is just fantastic. This has been the best week I can remember. It seems like even the good times before cancer are a real blur.
I worked in his classroom yesterday morning. He made another 100% on his spelling this week. Its good to see he's 'still got it' after being away from school for a year. We are so proud of him!!
I had to check both kids out of school early for dr's appointments. Devin wasn't too thrilled about it, but I assured him that Monday would be here before we knew it. I don't think he has EVER been this excited about school. I'm sure he just feels good to be doing things he SHOULD be doing. We are just thrilled that things are working out so great.
Kara's appointment went well. The dr. was exceptionally nice and full of compliments for Kara. She liked that. The bump we have been concerned about since early July decided to disappear this week, but he couldn't feel anything inside the tongue that would indicate cancer. Anyway, he does want us to keep an eye on her. If and when the bump comes back he wants to do a biopsy; just in case. He said he was very confident that it is nothing serious. Thats what I wanted to hear. Watch and wait.
Devin's appointment went well. Everyone was surprised at how much hair he has. Devin is amazed too. He is constantly rubbing his arms to feel the hair. When you lose your hair to chemo, its gone everywhere. Luckily Devin was able to keep a good amount of eyebrows and eyelashes; but the rest of his hair was gone.
I was afraid he might have some flu like symptoms as a result of the shot, but he seems just fine. He did sleep in this morning, but I would imagine he was just worn out from a fun filled week at school.
It has been such a great week at our house. Devin is feeling better than he has in a year, the kids are both loving school and things just couldn't get much better than this.
Thanks for checking in on Devin. He still enjoys reading your messages, so please drop him a line and let him know you were here.
Friday, October 15, 2004
WOW!
He did it again!! We are just over the top excited about his successful week. I picked the kids up yesterday and they were both all smiles. Devin even commented that "he couldn't wait to go to school tomorrow". He just acts thrilled to be doing 'normal' stuff.
Today will be a short day for both of them. I'm working in Dev's class this morning. He will take his spelling and vocabulary tests then leave. Kara has an appointment with an ENT up at Primary at noon and school gets out at 1:30 on Friday here.
Devin doesn't know it yet, but he's also got a little appointment scheduled in the oncology clinic for a flu shot. I know he won't be thrilled, but hopefully it will keep him well. The next challenge will be finding flu shots for the rest of the family. They are scarce, but we should all qualify to get them.
The kids had fun last night. We had made and decorated pumpkin cookies and delivered them to neighbors. We had been the target on Wednesday night of the Halloween phantom, so we returned the favor. It is a fun thing to do. Devin put on his ninja costume for the deliveries. You are not supposed to know who delivered your treats. He took it seriously!!
Anyway, not much else to report. Devin is happier than I have seen him in over a year. Its great. His smile makes us all feel good.
Please sign his guestbook and let him know you were here.
Wednesday, October 13, 2004
Can you say THREE !!!!!!
Wow...he did it again!!!!!!
We are just beyond thrilled around here!!!! He came out of school with a big smile on his face!!! It makes me so happy to see him having a good time.
After school we met Austin and Ashley over at Gene Fullmers indoor pool and the kids went swimming. They had a great time. Devin and Austin are big enough to go down the slide and kept going up and down the stairs. Full of energy.
Tonight, he ate some pizza and is doing his homework. No griping or complaining out of him. He's been listening to his Aerosmith CDs and has a new theme song: Back in the Saddle!!!! Sounds great to me!! Now to find the music and get it changed.
Oh, I just feel so good about this. I know things could change on a dime, but for now, for TODAY, things are good and I am just thrilled!! Way to go Devin!!! We are just so proud of you!!!
Thanks for stopping by to check on Dev. Please leave him a message and let him know you stopped.
Wednesday, October 13, 2004
HE DID IT!!!!
He made it through TWO complete days of school!!! I am amazed and delighted at his strenghth. He comes home tired, but gets up ready for more. He really acts like he is enjoying it. He says his teacher is really nice. He has been more talkative about school this year. I would imagine he just feels so lucky to be there!!!! I know the feeling.
He was excited to go this morning. We made salt dough last night for him to take to class. He was excited to see what they would be doing with it. It is so good to see him so excited about school....actually about anything!!
This week ( I know, its only Wednesday) has been so good.....I'm trying to relax and think positive. One day at a time.
Thanks for stopping by to check on Devin. Please sign his guestbook and let him know you stopped.
Monday, October 11, 2004
Today was one of the best we've had around here in I don't know when. It just seemed like everything went as planned. To have things go the way they are supposed to go is a nice change of pace.
Dev and Kara headed off to school this morning. Grandma and I went Christmas shopping at Toys R Us while they were at school. The entire time we were in the store I was expecting a call from Devin. It never came. He stayed at school ALL DAY!!
I went and worked in Kara's class this afternoon. It was a lot of fun. The kids are just so cute and smart. She always acts like she is thrilled that I am there.
The kids did their homework with no hesitation tonight. I even had them give each other a spelling test. Kara did really well on her test, but was unfamiliar with the pronunciations on some of Dev's words. He landed up having to write all of his, but he didn't complain a bit.
Tonight we went to the Halloween store and got Devin his costume: a ninja. He came straight home, put it on and has been stalking around the house. He must really feel powerful in that costume. I would imagine we will be seeing a lot of it in the days to come. Kara still can't decide what to be. We'll have to go through stuff she already has and see what we can rig up.
Tomorrow are school pictures. They both had them taken at the other school, but they will get them taken again. The new 'class pictures' has an individual of each student in the class on a sheet with the principal and teacher. They are really neat looking.
Thanks for checking up on Devin. I'm off to visit our caringbridge buddies.
www.caringbridge.com/md/micahfriend Micah's in the hospital and could use extra prayers
www.caringbridge.com/ca/christophersfight Chris has relapsed again and could use your support
www.ourboogieman.com Dillion is not feeling so good
I'm sure there are others. This fight is not easy. Please remember ALL of the caringbridge families in your prayers. Thanks.
Monday, October 11, 2004
Devin and Kara are off to school this morning. Its red ribbon week at school so they were dressed in their red this morning. Devin has on red, white and blue since its Columbus Day. He is very patriotic.
Streets look beautiful this morning with the leaves changing and the flags in almost every lawn. Looks like it will be a beautiful, sunny day here in Salt Lake.
Yesterday was good. We packed a picnic and drove up the Alpine Loop. The kids had a great time running around and playing. I took lots of pictures. Maybe one will be good enough for a Christmas card...we'll see. It sure was neat to see them running around having fun. We went to the exact same picnic area last year and Devin wasn't able to walk. He was freezing and sick the whole time we were there. This year was such an improvement. We have a lot to be thankful for this year!!
Devin got his homework done last night without too much of a fuss. He'd rather draw or play his games, but I think once he gets 'into' his homework he thinks its fun too. He has been having lots of math story problems and they really make him have to think. Its good for him.
I'm so glad to have last year behind us. Yesterday was such a reminder of how far he has come. Cancer is a tough road, but I believe we are seeing the light at the end of the tunnel.
Thanks for stopping by to check on Devin. He appreciates your encouraging messages, so please drop him a line and let him know you were thinking of him. Also, if you have a chance, our buddies Dillion
www.ourboogieman.com
and Micah www.caringbridge.com/md/micahfriend
could use some extra prayers.
Sunday, October 10, 2004
Devin is in a better mood. He spent most of yesterday acting like he was mad at the world. I finally convinced him to get dressed and we went and fed the ducks. The ducks were really getting lots of attention yesterday. The place was very, very busy. Both of my kids really enjoy going there; it seems to relax them.
A cold front blew in last night. We had planned on going to the drive in after eating dinner at Randy's parents, but it was too windy. We stayed at Randy's parents house visiting and letting the kids play. The kids played ping pong and 'practiced' on grandmother's piano. Dev is really wanting a piano or keyboards to play at home.
Its chilly here today. The extra chill will have the leaves down pretty soon. I'm planning on taking the kids up the Alpine Loop and maybe packing a picnic. It is so pretty up there NOW....next week the leaves may be down.
Anyway, thanks for stopping by. If you have a second, please leave Devin a message. He loves to read his messages. The other day when he was feeling a little down he told me he was going to read his guestbook "because so many people out there really love me and want me to feel good." Thanks.
Saturday, October 9, 2004
Good Morning.
Dev wasn't feeling so great last night and was up in the night. His stomach has really been hurting him lately. Today we will try his 'old' drugs and see if they help with stomach pain.
I think the 5 days a month of taking steroids could make anyone feel like crap. Its just like he can't get enough food in his body. He's been off since Sunday, but still really eating. Thank goodness he's got 2 sets of clothes: steroid clothes and regular clothes.
No real plans for today. We just take things one day at a time. The kids were wanting to go to the drive in movies last night, but they were not getting along very well. (that is a huge understatement) It seems that Devin feels just good enough to fight with his sister...and boy does she know how to push his buttons. They were exhausting last night with their constant arguing.
We went out to Famous Daves for dinner last night and they were just great. Grandma didn't go because she had a migraine (wonder why?) They were very well behaved at the restaurant and ate VERY well. The ride home was none too pleasant though. Those two were arguing about anything and everything. I don't understand why they have to fight like they do.
Maybe if the weather cooperates, Dev feels up to it and there is NO fighting around here we will go to the drive in tonight. I'll have to see what is playing, but I'm thinking they have at least one kid movie on right now. Holly had mentioned going to the corn maze this weekend, so thats a possibility too.
Anyway, thanks for stopping by. Devin loves to read your messages and see who came by to check on him. If you have a minute, please go by and wish our friend David a very Happy Birthday. He is such a great kid:
www.caringbridge.com/fl/david
Thanks........
Friday, October 8, 2004
Friday
Yesterday was a pretty good day. Devin stayed at school ALL DAY. That was a first. He seemed like he really enjoyed it. They have Spanish on Thursdays and he really seemed to enjoy that.
This morning I went and worked in his classroom. He did his spelling and vocabulary test then came home. His stomach is still bothering him. He seems to be eating enough, must just be the drugs sitting in his gut. Tomorrow he will switch back on the capsules rather than zantac.
I just keep thinking how glad I am that he didn't get started on that vioxx. Seems the paper is full of lawyers wanting to sue for people who were on vioxx. Every page has some other ad about vioxx.
Devin is home and just not quite acting like himself. He has been coughing and lying around. He is in a grumpy mood. I'd blame it on the methotrexate, but I purposely didn't give it to him last night. He'll start getting it on Friday nights instead. Trying to keep the routine of school going as much as possible.
Not much else to report around here. Devin did receive a couple of more checks to add to his Light the Night walk. I need to get those in the mail. His total is $880.10. Thanks again to everyone who donated in his name. He still talks about how much fun that walk was.
Please sign the guestbook and let Dev know you stopped. Thanks.
Thursday, October 7, 2004
Yesterday was a crappy day.
Dev was feeling like crap and slept until noon. His stomach has really been bothering him lately. I don't know, maybe he needs something different for his stomach. He seems to complain about it a lot.
Yesterday was the psych. evaluation. We left with more questions than answers and little or no self esteem. The 'expert', in my opinion, was a pompous a**. I have never felt so belittled or worthless in my life. I think Dev pretty much felt the same way. The things we do for 'help'. I don't know.
He is in school today. He didn't want to get out of bed, but seemed ok once he was up and dressed. He's not a morning person on his best days, so this school thing is hard at best. It will get easier though. I know it will. Things will start looking up again. Yesterday was just a minor set back. I'm convinced that if I say this enough it will happen.
Crap. I hate this cancer. It has wrecked havoc on everything and I just am tired of it all.
Off to check on our c/b friends. Hoping today is a better day for everyone. Thanks for stopping by.
Wednesday, October 6, 2004
Yesterday started off as a really good day. Devin and Kara got up and were both excited to go to school. I'm so glad. They both really seem to like school.
Devin lasted at school until just after lunch. I got a phone call from him about 1pm. He had a headache and his legs were hurting. I brought him home and doped him up and he seemed ok. He is still eating alot from the steroids, so he had a snack and played with his trains.
Early afternoon he started having tummy troubles which lasted into the night. I don't know if it is something he ate, or if he has picked something up. No fevers or anything...we'll just have to keep an eye on him. I sure hope he isn't getting sick. He's having too many good days to have it screwed up by getting sick.
He DID NOT want to do his homework, but after much stalling and a couple of fits he did it. He didn't have much, but boy did he make a big deal out of it. I told him he spent more time avoiding the work than he did to just finish it. He is just really out of the routine. Hopefully the homework will start becoming routine and not such a big deal as he adjusts to school.
Not much else going on here. The kids are still sound asleep so I'm not sure how Devin is today. I will be finding out shortly. He has a doctor's appt. this afternoon so if he is able to go to school I will be picking him up early.
Thanks for stopping by to check on Mr. Devin. He really appreciates your messages, so please drop him a line. Please keep Devin and all of the c/b kids in your prayers. Thanks.
Update: NO school for Mr. Dev today. I woke him up and he still feels pretty cruddy. He also has a low grade temp...hopefully he will feel better soon and avoid the clinic.
Tuesday, October 5, 2004
Devin got out of bed yesterday morning ready to tackle the world. He ate a good breakfast, gathered his things and was ready for school. He said he wanted to try to stay all day. Great.
I dropped the kids off at school and went about my errands. The time got later and later with no call to pick Devin up. I was getting excited. I looked at my watch to see that he would now be at lunch, then recess. I was feeling very good about it all.
At 12:40 I went to work in Kara's classroom. As I checked in the office they assured me that Devin was doing great. They had seen him several times around in the school and he was smiling and having a good time. GREAT!! Just what I wanted to hear.
About 2pm, the school secretary comes into Kara's classroom frantic. She explains that Dev has been stung by a bee. I tell her I will be down in the office after I get my group settled to check on him. Before I can get them started the principal comes down. Evidently Devin was pretty upset and so I headed down to the office.
He was upset. He was trying not to cry. He was pretty worked up about the whole situation. He was holding a cold pack on the sting and trying to get himself settled down. He told me that "some people died" when they get stung by a bee. I assured him he wasn't one of those people.
Of course I was scared too. He's never been stung before and the reality is anything could happen. I was sitting there looking at him wondering how in the world this could happen. I checked out his throat; looked good. His face was pretty red and swollen, but he seemed ok. I told him I would finish up in Kara's class and we would go. He was fine with that.
I went back down to Kara's class to finish and collect my things. Kara insisted on staying at school for the last hour. Fine. Before I could get back down to the office the school counselor came down to let me know about Devin. Seems the whole school was VERY worried about Devin. Let me tell you, I was so relieved. The school really sprung into action to make sure Dev was ok.
Later, on the way home, Devin confessed that the reason the bee stung him was because he 'thought it was a fly and was trying to catch it'. No wonder. He is a funny kid. I asked him what he planned to do with the fly.....he didn't know. He just wanted to see if he could catch it. He did!! Bet he won't be trying that trick again any time soon.
The bee sting was a short lived tragedy. He is fine. We went to the library after we picked up Kara and he has been reading ever since. He seemed very happy with school yesterday. Very happy. I hope that it will just continue to get better each and every day.
Thanks for stopping by to check on Devin. Please keep him and all of our caringbridge buddies in your prayers. Our friend Christopher in Canada is in dire need of some extra help. He needs to come to the US in order to get in on a new clinical trial.....this is an urgent matter. Thanks.
www.caringbridge.com/ca/christophersfight
Monday, October 4, 2004
Sunday was a good day. Devin felt good most of the day and we just had a lazy day. The tremors came and went a couple of times during the day, but he seemed to just deal with it. We're thinking it must be from the vincristine.
He is still eating us out of house and home. He finished his five days of steroids last night. After he gets the steroids out of his system he usually doesn't eat much of anything. It all seems to even out eventually.
He wanted to play volleyball again last night. He has really been practicing his serve. He was really hitting them too hard last night. Eventually our game was shut down when I bounced the ball over the fence into the school yard. Boy was he mad at me about that. Seems like its the smallest things that get him agitated.
He had a hard time settling down for bed last night. He had another 100 questions to ask about school. He seems to like it just fine, just nervous that something might happen at school....like the tremors or falling or something.
He seems to really 'think ahead' about things like that. I think the week at school has been good for him. He has needed things to do. Hopefully he will feel good after school and he can start back in scouts. They meet on Monday afternoons. He loved it before when he could go.
Thanks for stopping by to check on Devin. Please drop him a line and let him know you stopped.
PLEASE keep our friend Christopher in your prayers.
www.caringbridge.com/ca/christophersfight
Saturday, October 2, 2004
A good day.
Absolutely beautiful weather here today. The leaves are falling and the sun was shining. Just a really nice day.
Devin went to bed last night dreaming about tacos. He is on the steroids now so he pretty much thinks of food all the time. After he ate a peanut butter sandwich and some cereal we went and got his tacos. Its amazing that he eats so much when he's under the influence of steroids, yet nothing when he's off of them.
We took the kids to a park at the Jordan Parkway to play. There were lots of ducks there, but lots of signs saying not to feed them. Devin made sure and told everyone that came up with bread NOT to feed the ducks. I guess he thought he was in charge today.
He has been feeling good all day. Eating and playing and just being a kid. He is looking good and seems to be getting stronger each day. Tonight we played volleyball out in the back yard and he really put his all into it. He should be getting pretty tired soon.
Thanks for stopping by to check on Devin. He appreciates your messages so please drop him a line. Also, all of our caringbridge friends could use some extra words of encouragement right now. Thanks.
www.caringbridge.com/ca/christophersfight
Please stop by and say HI to Chris. He and Devin have the same kind of cancer. Chris has relapsed again and can use some extra support. He is such a strong kid.
Also, our friend, TULI turns eight tomorrow. Please stop by and wish him a Happy Birthday!!
www3.caringbridge.org/ut/jankini2
Friday, October 1, 2004
A good couple of days.
Dev has gone to school for a few hours the past couple of days. He is slowly getting back into the routine. It has been hard, but he is giving it an honest try. He has been away from school for a year so there is definetly an adjustment period. Hopefully next week will be a little easier. One day at a time.
His back seems to be better this time around. He has been having more headaches, but maybe that is from doing more reading and schoolwork. Lortabs seem to take care of any aches and pains he gets. Thank goodness they decided NOT to start him on that vioxx. There was an article on the front page of our paper about the recall today.
The weather has been nice here. Looking more like fall every day, cool in the mornings, but still getting warm in the afternoons. Leaves are starting to fall. We made a lot of noise when we were out walking this evening...lots of crunching leaves.
The kids are starting to talk about Halloween and trick or treating. Devin wants to be a ninja and Kara is undecided. She'll probably change her mind a few dozen times before Halloween. She is funny.
Kara absolutely LOVES her new teacher and classroom. She is so excited to get up and get to school in the morning. She just loves everything about it. I am so happy for her. I am hoping that Devin will start feeling really confident in his classroom really soon.
My mom is talking seriously of going back to Oklahoma. I still cannot believe she has been here a year!! I don't know what we would have done without her. She has been a true lifesaver!! Well, actually, I think I probably would have gone nuts, but thats a different story altogether.
Mom, thanks so much for all you have done for us. You've kept us from falling apart and helped us to see the good in each and every day. Even in these hard times you were always able to point out something positive to be thankful for. We appreciate you more than you can know.
Please keep all of our caringbridge buddies in your thoughts and prayers. It seems like everyone we know could use a few extra positive thoughts and words these days.
Have a great weekend. Hug your kids.
Wednesday, September 29, 2004
Things are okay.
Devin fell last night when he and Kara were goofing around and twisted his ankle. He acted like it hurt at the time, but went to bed and we just hoped the pain would go away.
He woke up this morning and fell getting up to get ready for school. He limped around and said he didn't feel good. I called the clinic and they told me to elevate it and ice it. We did that and it seems better. If its still hurting in the morning he is to go see an ortho. He says it is fine now, so hopefully he will be going to school tomorrow.
He is telling me he wants to go all day. He really missed not getting to go to recess when he went on Monday. I told him he could go all day and if he gets tired to just call me. I can pick him up and let him come home and rest. He really wants to be able to be a part of something rather than the hospital scene.
Checking on our friends tonight is a little depressing. Jaxon's surgery is done, but it was a little more difficult than they expected. www.caringbridge.com/mn/jaxon
Christopher has three new tumors and that just breaks my heart. He is such a neat kid and has been through so much. www.caringbridge.com/ca/christophersfight
Kayla isn't feeling up to par and has clinic tomorrow.
www.caringbridge.com/hi/kayla
Please, if you have a minute, please go and visit these kids. We can all use all of the encouraging messages we can get. Thanks for stopping by to check on Mr. Devin. He likes messages too, so please drop him a line. Thanks.
Tuesday, September 28, 2004
Another good day.
Devin got accessed quickly then was sent down to CT. It went as smooth as could be. The techs in CT asked Devin if he would paint one of their ceiling tiles and he agreed. They loaded him up with a tile and paints and sent him back to clinic to 'work'.
Back in clinic the labs were back and looked about the same as last time. Finally we've got some pretty consistent numbers. Its about time. Dr. L. was impressed that Dev had gone to school and noticed a great improvement in his walking. He ordered the vincristine for 75% (last time was 50%). All oral chemo was kept at 100%.
While waiting for the chemo to show up Devin got his tile painted. He just used the black paint and painted an airplane....I don't think anyone was surprised about that. He does love airplanes.
As I was wandering the halls I saw one of my buddies whose child has a brain tumor. I was hoping to see her cute little guy, Jakob. She told me his chemo isn't working and they will start him back on radiation this week. What devastating news. His mom is so strong and this cancer is so awful. Here we are having a good day and they are back to square one, again. Its just so unfair.
Further down the hall I spotted someone else who looked familiar: TULI!!! How exciting to finally meet up with him and his extra-nice mom. Tuli was playing Super Mario while he was getting blood. I sure hope he is feeling lots better tonight after getting 'pumped up'. I know blood transfusions always made Dev feel better.
Devin was so excited to see people he knew up at the clinic. His scans came back same as July's, so that is good as well. Dr. L. said the only difference is the area looks more calcified than last time...so of course we will keep a close eye on it. Next scans in 3 months and hopefully we can stay the heck away from the clinic for 4 weeks.
All in all it was a great day. The stress of scan anticipation is over and with the great results I bet we will all rest a little easier tonight. Devin is planning on going to school in the morning, so we're all hoping this back pain stays away (don't even say it out loud) and he can go and have a good time.
Thanks for checking in on Devin. Please remember all of our caringbridge buddies in your prayers. Our buddy, Jaxon, will be having surgery tomorrow. Please, if you have a chance, go and offer his family some extra support. www.caringbridge.com/mn/jaxon
Good night
Monday, September 27, 2004
I'm happy to report that today went GREAT!!!!
After going with dad on Saturday to 'Bikini Cuts' for his first hair cut in over a year and shopping for a back pack, Devin declared himself ready to go to school. He was so excited that he couldn't sleep last night. He was constantly thinking of different scenarios that might happen at school. Thank you for all of the prayers that school would go so well.
He was a little nervous this morning, but seemed just fine going into the classroom. He said the kids asked him lots of questions and he had fun. He came out of the classroom with the biggest smile on his face. I was so glad. He seemed like he enjoyed it all. He giggled and grinned most of the afternoon. It was so good to see the 'old' Devin shining through.
Kara enjoyed her new class as well. She and Devin were worn out when they came home, but thrilled to be there. She has already made a few new friends, as well as hooked up with some of her old buddies from preschool.
I am so thankful that today went so well. I couldn't have scripted it any better. I'm so glad that Devin felt comfortable back at school and enjoyed going. He has really missed seeing everyone. He has chemo and scans tomorrow so I don't know when he'll go back, but just glad he had such a good experience today. One day at a time.
Tomorrow will be vincristine day. We are all really dreading it; especially Devin. This drug, along with the steroids is what causes his terrible back pain.
Praying for clean scans tomorrow. Please keep Devin and the other caringbridge kids in your prayers. Off to visit some of our friends. Thanks for stopping by to check on Devin. Please sign the guestbook and let him know you stopped.
Saturday, September 25, 2004
A good day yesterday. Kara and I went to both schools and tried to get all of the paperwork and stuff done. I think we got most of it all taken care of..just had to bring home Dev's medical form to finish. Kara was so excited to be there. Her new teacher was at school so she went and saw her classroom again. She is very excited!!
Devin slept while all of this was going on. He has been up early every day this week. I guess it finally caught up with him. He was glad to hear he was a 'go' for Monday morning. He will go from 9 - 11. Just a short, sneak peek at school. He is really excited. He keeps telling me things he needs to 'get done' before he goes. Number one on the list is get a haircut. Seems unbelievable that he hasn't had one in a year.
We went to the Scarecrow Festival yesterday afternoon for a couple of hours. The kids had a good time playing the games and doing the obstacle course. Both kids and Grandma won stuffed animals. They were thrilled. Devin got a massage while he was there. By the time he left he was on top of the world.
We came home so Kara could go to dancing. I figured while she was at dance Devin and I could go shopping for school things, but he was exhausted. It was a warm day yesterday and he tires out pretty quick. So, hopefully today we will get things done.
Thanks for stopping by to check on Devin. He appreciates your messages, so please do take a minute and drop him a line. He has a big week this week with school, chemo and scans so please remember him and all of our caringbridge buddies in your prayers.
Friday, September 24, 2004
Its Friday already!!
The kids are still asleep and the house is very quiet. Randy was up and out of here especially early this morning. He was driving up to Midway for a Fall Conference/golf tournament today. He's so stressed with work right now it will be good for him to have a change of scenery.
Devin had a pretty good day yesterday. His days seem pretty good. Its the nights that aren't so much fun. For whatever reason he seems to get weepy in the evenings. I have no idea why, but he seems to have no control over it. Needless to say, we have many one on one discussions every night about how he is feeling and such.
He is a good kid. Sometimes I think his being so smart is a curse. For the most part I think he understands TOO much about cancer. He is really afraid of IT coming back. I guess maybe the tensions are building because Tuesday is chemo and scans day. He is not looking forward to that at all. We'll have to keep his mind busy this weekend.
He is adamant that he wants to start back to school on Monday. Kara will go back to her new class on Monday, so he wants to go too. I haven't had a chance to talk to the school and let them know he's coming, but I will be doing that today. He is really excited about picking out a new backpack and school things today. He has worn out two backpacks just from lugging stuff back and forth to the hospital and clinic.
I am worried about school. He hasn't been in a YEAR!! Hard to believe. We will start him out slow and just take it from there. We already know that Tuesday is a bust because of scans and chemo, but Monday looks like it is a go. I'm nervous and excited all at the same time.
Thanks for stopping by to check on Mr. Devin. Please drop him a line and let him know you were here. It means so much to him/us to see who visited. If you have a chance please go visit some of our caringbridge friends. Our buddies can use all of the support and prayers they can get. Thanks
Wednesday, September 22, 2004
A not so exciting day here.
Devin woke up with arm and leg tremors. My first thought: the new medicine he started last Tuesday. I sent grandma down to look it up on the internet and sure enough tremors was there as a remote side effect. He just has a time switching drugs.
I waited a couple of hours thinking it would go away...he just acted like he felt awful. Kept saying he thought he would throw up and was stuffing his face with peanut butter crackers....not something I would have expected. Usually when he feels nauseaus he eats NOTHING...even smells can get him started. Figured he probably had a stomachache even though he wouldn't admit to it.
I finally called clinic and explained what had been happening for the past 2 hours. I told them I had held all meds today, but they still wanted to see him. He was none too thrilled to be going up there, but I have yet to see the day he was. I guess he always has that fear that he could land up inpatient.
He saw two docs today. Dr. O'Smiley who told me to stop worrying...sure not a problem. Its just any drug I happen to give my kid results in some wierdo side effect. No problem. We decided that the vioxx that he was supposed to start tomorrow is too risky. One of the rare side effects is blood clots.....don't want to risk that. He already has a history of clots with the one in his brain last October and the one under his right arm. So anyway, we'll try the lortabs to keep the pain under control.
Talked to Tuli's mom while I was in clinic. Tuli is still up on 4th, but feeling better. Hopefully he will get out of there soon. We feel your pain Tuli!! Hang in there and you'll be home sweet home soon.
Yesterday was a good day. It seemed wierd it was so good and hassle free. The kids have been wanting to ride the Trax train so we did. We got off at ZCMI mall and went to see the Titantic exhibit.
Both of my kiddos are really big Titantic fans. It was neat to see that Laura had posted Titantic pictures on Dev's site today. We must think alike. The exhibit was really neat. Everyone gets a boarding pass when you enter. Luckily, Grandma, Devin and Kara all made it safely. I, however, was not so lucky. It really makes it seem real. I recommend it to anyone. Its a traveling exhibit so I'm not sure where it goes next, but it was definetly something we're still talking about.
Not much else going on here. I'm still planning on getting the Light the Night pictures up on Devin's site. Just doesn't seem like I've had many free minutes these past couple of days.
Thanks so much for checking in on Devin. He loves your messages, so even if you just have time to say HELLO, please do it. It makes him feel good to see how many people are thinking of him and wishing him well.
Sunday, September 19, 2004
Whoa...a busy, fun-filled weekend. This is a long update, but a good one. Sit down and get comfortable. A lot happened this weekend.
Thursday evening we drove to Wendover, Nevada for the flight and air-show. The kids had fun swimming in the big pool at Montego Bay. The weather was perfect!
Friday we woke up, ate a bite and headed the few blocks to the airport. Devin was able to meet the Lima Lima pilots; who gave him a signed poster. He really enjoyed talking with pilot Ed Hicks and learning about his flying career.
It was decided he was too small to stay in the safety gear of the plane so he was unable to co-pilot the plane. In case of an emergency the pilots are ejected and Devin would NOT have stayed in the gear. We were glad that the pilot was so concerned about Devin's safety. One of these days when he is older and bigger hopefully the opportunity will present itself again.
Check out the Lima Lima site: http://www.limalima.com/about.htm
He also got to meet Chandy Clanton. She is an aerobatic pilot who flies the really cool Edge 540 plane. Devin was excited to hear that her current plane is built in Oklahoma...home to grandma, grandpa, uncle as well as many other relatives and friends. She gave Devin and Kara some tatoos and frisbees.
Chandy's site: www.chandyclanton.com
The guys at the Wendover Airport were just great. When it was discovered that Devin wouldn't get to fly the T-33 they began working quickly to get another flight arranged. Even with a big airshow to finalize, they put Devin's wish at the top of their 'to do' list. I cannot say enough what a great group of people we encountered.
Friday they were unable to get Dev a flight, but our family was treated to a tour of the base grounds there. It was a very interesting tour with plenty of history. The group that trained there was the first group to drop the atomic bomb on Hiroshima. Lots of history there. A little above the kids heads, but interesting. Devin was given a hat from the historic Wendover airport, as well as tickets for Saturday's airshow.
A good website: http://historytogo.utah.gov/atomicage.html
Saturday morning we got a call to come over to the airport. Devin and dad were taken up in a Cessna by a group from SLC. They both thoroughly enjoyed the ride. Devin was smiling from ear to ear. We stayed around and looked at all of the planes we hadn't seen yesterday; including a replica of the Wright Brothers plane from USU.
http://wrightflyer.usurf.usu.edu/news/2002-mar10
We stuck around for several hours after Devin's flight waiting for the airshow to begin. Mother Nature decided not to cooperate and many of the planes were not able to fly. Wind didn't scare Chandy though..we watched her go up and do her dizzying tricks. Its amazing what she can do with that airplane!
After hearing that it was questionable whether or not any other flights would take place we loaded up and drove the 110 miles back into SLC. It was so windy coming home that it was scary. Both kids fell asleep on the ride home. I was glad because I knew they needed to get rested up for the Light the Night walk.
We came home to more money in the mailbox. CCS had brought over a nice donation for Devin, grandpa and uncle had both sent money. He was excited to see all the donations. We tallied everything up and his grand total was $840.10 !!! He was thrilled with himself. We were proud too. His goal was $500. Next year he thinks he will collect twice as much as this year. I know he will.
We met our walkers at Sugarhouse Park at 6pm. Somehow Devin's name wasn't on the list of pre-registered teams, but we quickly got his paperwork turned in and got a list of things to do. First off we picked up t-shirts and sweatshirts, then raffle tickets. The kids started playing games and we just let them run around and have fun. It was still pretty windy in SLC, so we waited until the last minute to pick up our light up balloons.
Light the Night was a blast. The kids were having so much fun. We ate pizza and played games and listened to the live band play. It was just great. While we were playing games they announced for Devin to come to the pavillion. He was so excited. Becky from LLS had asked if he would speak and he gladly said he would.
He got up in front of all those people and told them who he was and what kind of cancer he was fighting. He was just so brave that we were all pretty blown away. Everyone was clapping for him and he was just smiling from ear to ear. It was a great experience.
After his speech they asked if he would lead the walk. Sure. He took his place at the front of the line holding his white survivor balloon. He walked pretty good for most of the uphill walk. Finally he gave up his leadership role and sat down to rest. He didn't rest too long before he was up again. He walked and walked until he was exhausted...by this time we were at the tail-end of the walk. He couldn't go anymore so he and grandma hitched a ride with the pick-up crew. He did his best and we were all very proud of him.
Back at the pavillion everyone was gathered around resting and waiting to hear the grand totals from the walk. I don't remember the exact total, but it was around $22,000 in walker donations. A lot of the people had corporations sponsoring them so had matching donations that brought the totals up to around $40,000. There was lots of cheering and applauding.
Pretty soon, names started being drawn for some incredible door prizes. Devin's name was called for a "Lucky You" women's perfume gift set. He was thrilled and promptly gave it to me. He is such a sweetie!!
We left the walk tired but happy. The kids had such a great time and are already talking about 'next year's walk'. We met some great people; including a friend's granddaughter that is finished with chemo. It was good to see so many people turn out for such an important event. I am looking forward to next year Devin being able to say he just took his last chemo treatment.
Today marks one year that Devin has been on chemotherapy. He has come a long way, but still has a long ways to go. Thanks for keeping him in your thoughts and prayers as he continues to fight to keep away this beast called cancer.
Thanks for checking in on Devin. He is exhausted, but still smiling. It was a great weekend. Please drop him a line and let him know you stopped. Thanks.
Tuesday, September 21st
Not much 'news' to report here. Devin is still recuperating from his weekend of fun. A cold front has moved into SLC and we have been staying inside, just relaxing.
We were supposed to leave today on Devin's MAW trip, but he just isn't up to it. We'll have to re-schedule for some time when he is feeling more like his pre-cancer self.
If you have a minute please visit some of Devin's friends. Tuli is back in the hospital and Jaxon is having some real problems right now.
Tuli: http://www3.caringbridge.org/ut/jankini2/
Jaxon: www.caringbridge.com/mn/jaxon
Thanks..
Wednesday, September 15, 2004
FINALLY....A GOOD DAY!!!!!!!
Today has been much better. Everything just seemed to fall into place today. Its about time. I know lots of people have been praying for Devin and our family and we certainly appreciate it. Please don't stop..we can use all the help we can get.
This morning was physical therapy. Kevin (the PT guy) said Devin is keeping his strength and looking good. He won't be seen in PT until after his next vincristine on the 28th of this month. Kevin said if he gets the horrible back pains he will refer him over to TOSH for water therapy in their pool. That sounded good to Devin. He loves swimming.
While we were at PT and Devin was driving the butt car (his name for it..you have to use your butt to make it go), Kevin mentioned to me that Devin seemed a little down. I told him that was an understatement. He asked if Dev was getting help.......NO..not really. He said he had a friend who works alot with oncology patients that he could connect Devin with...soon. Great.........The sooner the better.
This afternoon I got a call from Kevin's dr. friend. He will see Devin TOMORROW at 4:30pm. I just about cried when he told me he would help Devin. Devin needs someone, besides us, to talk to about all this stuff. I'm so glad we've got something set up. Devin feels good about it too. We talked a little about it tonight and he is ready to 'get some things off of his chest'.
I also called and got Kara an appointment speedy quick with an ENT. The white spot that showed up on her tongue the first part of July came back 2 weeks ago. Her pediatrician put her on an anti-fungal and said if it wasn't improved in 2 weeks to get an appointment with an ENT. I couldn't believe when the nurse said Kara could be seen tomorrow!! Someone has been looking out for me today.
This afternoon we went to our favorite little one year old's birthday party. Matthew turned one today and had a pizza party at his house to celebrate. The kids had a great time playing with his big brothers Nicholas and Ryan, plus the other kiddos at the party. Matthew is just so cute. He looks like he should be in commercials. Just a beautiful little baby..perfect.
We got home to an answering machine of phone calls. Margie called and asked if Devin and Kara wanted to go for a ride in her go-carts. You bet they did!! They really really enjoyed it. Miss Crump took Devin for a ride and Margie took Kara. They keep asking me when they get to go again. They loved it!!!
Tonight as I look at the flowers that a friend had delivered yesterday and reflect on the day I feel hopeful once again. Tomorrow promises to be a good day. After the doctor's appointment we are leaving to go to Wendover for the big airshow. Make a Wish has arranged for Devin to co-pilot a plane on Friday and he is VERY excited!!! We are too. We'll stay the night in a hotel, let the kids swim and let Devin get his dream to fly.
Devin is still collecting money for his 'Light the Night' walk. He has collected over $400 so far. He was excited to get 2 checks in the mail today and is expecting some more before Saturday. I think he will easily beat his goal of $500. Thanks to everyone who has helped sponsor him. It means a lot.
Thanks for stopping by to check on Devin. He appreciates your messages, so please drop him a line.
Wednesday, September 15, 2004
We had an OK day here yesterday. It seems a bit more like fall with the weather cooling down and our trees beginning (already) to drop their leaves.
No fundraising yesterday. We stayed out and about most of the day. I think a change of scenery from this house helps a lot. Devin loves looking at cars so he is always on the lookout for fast cars, especially Ferrarris, wherever we are.
I went again yesterday evening to pick up Devin's new pain meds. No more narcotics. I'm still thinking he could have some of this oxycontin in his system. I'm holding off giving him the new medicine until he specifically asks for it. Hopefully he won't need it until his next vincristine.
Last night we went to Randy's parents house. It was his mom's birthday so we took her some gifts and had some cake. Devin enjoys going over there so he can 'play' her piano. He loves music. I need to get his guitar lessons started back up again.
I've got a lot to do to get him well. Still working out the details of getting him a professional to talk about his fears and frustrations. This cancer stuff is so life altering. It not only affects the body, but the mind as well. Its so unreal the devastation it brings. Never in a million years would I have guessed something like this could happen to my child.
Cancer knows no boundaries. It is not prejiduced. Its like a thief in the night. Stealing your identity and your normalcy. Taking your life as you know it and turning it upside down, then kicking it around. I hate cancer. I'm not finding anything positive about it. It has taken so much away from my son, my family. This was not the childhood I pictured for either of my kids...for anybody's kids.
Please help us "Light the Night". Devin is collecting for his team's walk on Saturday, September 18th. Checks can be made to the Leukemia Lymphoma Society and mailed to:
Devin R.
PMB #429
6914 S. Redwood Road
West Jordan, UT 84084
Thanks for checking in. Hoping for a better day. Please sign the guestbook and let Devin know you were here....even a quick "HI" works. Thanks.
Tuesday, September 14, 2004
Where to begin???
This is not a happy update. No sugar-coating...so if you're looking for good news, I will warn you, you won't find it here.
Called the clinic early yesterday and was told to 'come on up'. I woke Devin and told him we were going to get him some help to make him feel better. He was none too thrilled, but I mentioned he could take his 'Light the Night' fundraiser stuff and collect donations....that encouraged him to get up and get ready.
Once in the clinic he was sent right back to a room. He began soliciting for donations right away and made sure everyone in the clinic knew he was walking. Funny thing was, no one in the clinic....make that the entire hospital, knew ANYTHING about the 'Light the Night' walk. What else is new?
Dr. L showed up in Dev's room full of concern. Devin told him EVERYTHING. Held nothing back...was just very matter of a fact. Dr. L. had our social worker in there...for whatever reason. He told her to get a psych consult and get it NOW. He was concerned. He felt like Devin should NOT be taking anymore oxycontin and we agreed that we didn't like the drug. I think we all knew that before we ever walked through the door.
Anyway, I leave Randy in the room with Devin to wait for the 'doctor' to show up for the evaluation. She shows up, I update her on what is going on....wondering whether it is drugs or a deeper issue. She wants to talk to him alone.......ok. I explain to Devin that she wants to help him....and we will be in the waiting room.
She is with him for about 40 minutes. Finally the social worker comes to get us and Randy and I go in, along with Dr. L. She thinks it is the drugs. Dr. L. starts asking her questions...which she can NOT answer....asking about something to lighten his mood to get through the remaining treatment. It is after all of this that she announces that she is NOT a dr., but a social worker, so she doesn't know much about drugs or such.........Dr. L. looks flabbergasted. Randy and I are speechless. Our social worker sleeks back into the corner where she usually hides out. !!!!!!!!!!!!!!!!!!!!!
Dr. L. asks her to get him into a psych. TODAY. No such luck...she 'does her best' and gets him an appointment for October the 6th!!!!! She also tells us she could get him admitted to the hospital for some in-patient counseling with a bunch of teenagers.....I think not. Plus, we would NOT be able to see him for a minimum of 5 days. I, personally, think that could do more harm than good. I mean he has always been with his family. He's eight!!!!
So, we leave the hospital AGAIN with more questions than answers. Oh, but we do have that appointment in 3 1/2 weeks to see a 'professional'. In my mind this is a crisis. I do believe that Dr. L. thought this was a serious issue as well. He said that usually kids on treatment that are older have these same feelings and frustrations that Devin is having...its just not so normal to see them in an eight year old...but then again, Devin isn't your average eight year old boy. This has been a year of serious growing up...for all of us...whether we wanted to or not.
The moral to this story is....the people that are put in place to help you have lives too. They still need to eat lunch and play golf and live their normal lives. I certainly can't expect a psychologist to drop everything and see my fragile eight year old son just because he has a plan for killing himself. It is just so damn unfair.
Praying for a better day. Thanks for stopping by to check on Devin. Please, if you've read this far, drop him a line in the guestbook. He can use all the cheering up he can get. Thanks
Monday, September 13, 2004
Well, I thought yesterday was a better day. We took the kids down to the aquarium at the Gateway, let them play in the fountains and went out for Thai food. Devin seemed to enjoy the day and absolutely loved his dinner.
We got home and walked around to some of the neighbors and Devin asked for donations for the Leukemia Lymphoma "Light the Night" walk that he is planning on doing this coming Saturday. He picked up over $100 just going to a few houses. That got him motivated to keep going. He is wanting to raise a lot of money. He wants to check his post office box and see if he's received some donations in the mail. The address again is:
Devin R.
PMB #429
6914 S. Redwood Road
West Jordan, UT 84084
Checks can be made out to the Leukemia Lymphoma Society...thanks!!
After we got home from our walk we just watched some tv and talked. I told him it seemed like he had a really good day. His response was 'he was just smiling to make us feel good'....he still has the sad feelings. I didn't expect them to just go away and I guess I should be thankful for his honesty. I've got ANOTHER call into the clinic to see if someone, preferrably HIS doctor can help.
Hoping for a good day with some answers. Thanks for the encouraging e-mails and guestbook entries.
Sunday, September 12, 2004
I believe everyone probably has a breaking point. I also believe that no child should have to go through the physical and emotional torture that cancer puts them through.
Last night was hell at our house. A lot of nights lately have been. We keep thinking we can ignore it and talk our way out of it, but something is not right. Devin's emotions are completely out of control. He is so sad.
I really thought we were on an uphill trend. He had been pretty good...seems to hit him in the evenings...for a few nights. These 'good'...I should say 'better' nights were the days that he received NO oxycontin. He just seems to be so out of control with his feelings when he is on that drug.....I'm not even sure it is taking his pain away. Physical pain. Back pain. I don't feel too sure of much of anything anymore. I just know that this is not right.
Cancer is hell. It robs and steals and steals some more. Many days I do not recognize my son. He has become hardened to the world. He is afraid. I am afraid. He knows too much. He tells me he is scared he is going to die, then he tells me he wants to die, that he is tired of all of this.
I am scared. Devin is scared. We are all scared. Here we sit right in the midst of what was supposed to be our 'maintenance picnic' and no one is smiling. Its all a front because we are all just waiting for the other shoe to drop.
I hate this life. I keep it to myself for the most part and try to keep up this false front of 'everything is going to be alright', but the truth is, Devin is tired of pretending. He is tired of it...and he told us so. He was in tears for hours last night. So upset and so afraid. What are we supposed to do??
I don't think this is normal. For an eight year old boy to tell me he is ready to die. I would like to think all of the worst is behind us and times are changing for the best. Thats a better thought.
Devin had trouble going to the bathroom last night. I called the on-call...another d*&* doctor I've never heard or seen. I explain Devin's emotional state, his taking of oxycontin, his inability to urinate. He says Devin should be seen......not for the emotional issues that are the forefront of MY mind as a parent, but for the urination issue.
We start to get Devin ready for the trek to the hospital when he is able to 'go'. Magic. I call the dr. back....a child wanting to die at eight years old is a Monday through Friday 9-5 issue....certainly not an emergency.
We will watch him close. We will pray for a good day. It is exhausting. This is our life. I don't want Devin to be so sad. He has so much to live for. I am totally unprepared for this.
Saturday, September 11, 2004
An interesting day...
The kids got up early this morning. They were excited to go to the University Kids Fair. Only one problem...we drove all the way up there and there were so many people that we were going to have to park far, far away. Devin could have probably walked to it, but not sure about getting him back to the car, so we skipped it. Kids were fine with that. No arguments. I guess Devin really understands his limits.
Since we were up by the hospital we took a little surprise up to our caringbridge buddy, Tuli. He was sleeping, so Kara and I just gave the package to his nurse. Hopefully someday we will get to meet him. Dev refused to go into the hospital, so he and grandma stayed out in the car. Good thing he didn't go in because they were having elevator problems when we were there and Kara and I had to walk down 4 flights of stairs. I honestly don't think he could do that right now.
We got the Maxima fixed........finally. Turns out it was just the battery. Landed up the battery in it was still under warranty so we didn't have to lay out a dime to get it fixed. That was a nice (and welcome) surprise.
Devin wanted to go to the mall this evening and look around. He likes to go and look at all the t-shirts and stuff. Didn't buy a thing, but saw one of Randy's college friends, Paul and his family. They were glad to see Devin up and around.
I think Devin has overdone today. We ran by Target to get him some blank tapes and his legs and feet were giving out on him. I had to prop him up on the cart(again) to get him out of the store. His temp is running about 99.8..which isn't much, but its high for him. We shall see what happens.
Devin is still planning on the Wendover Air Show on Thursday and the Light the Night walk on next Saturday. His friend, Mrs. Pam, was nice enough to walk for him in St. Louis tonight.......he thought that was really neat!! Thanks Mrs. Pam for all you do!
Thanks for stopping by to check on Mr. Devin. Our family appreciates your words of support and prayers for Devin and our family. Please drop us a line and let us know you stopped.
Friday, September 10, 2004
Finally.....Devin got a break from the pain!!! It was nice to see him smiling and not grimacing all day. He kept saying he was hungry, but wouldn't eat. Finally about 7pm he said he would eat some pizza, so Randy brought home a Papa Murphys and he ate really well.
Randy's parents came over last night to see the kids. Devin was running around and even played some volleyball with Grandpa. It was nice to see him playing again. I'm hoping he doesn't pay for it today. He sure had a good time though.
Today he is going back to the chiropractor again. Other than that we don't have any big plans. I need to make a trip up to PCMC to pick up another rx for the pain meds. Since it is a narcotic I have to have a 'real rx' in order to get it filled.
Kara starts dancing this afternoon. She is really excited. It will be good for her. She has loads of energy. I wish she could share some of it with the rest of us. It seems everyone around our house, except Kara, is worn out. Its been almost a year now since Devin was diagnosed. Seems unreal still.
Thanks for stopping by to check on Devin. I'm hoping he has another good day where he feels like being up and around. Please sign his guestbook and let him know you were here. Thanks.
Thursday, September 9, 2004
The chiropractor seemed to help Devin. He's still in pain, but seems to be moving a little quicker. His mood is not good and that scares me. He seems very angry with everyone and everything. He does not seem like Devin to me. It scares me.
Last night was awful. He was not himself. I thought perhaps he had some build-up of the meds since we were able to up his dosage last night. The on-call didn't think so.......but something is not right!! We've backed him back down on the pain meds and are putting the tylenol in between. He needs some relief. He feels bad and agitated more often than he feels good.
Clinic never called me back last night. I'm frustrated with it all. It seems to me that they aren't believing this pain is so severe. Maybe they would like to come and spend the day with us. Probably just a few hours would clue them in to the fact that Devin hurts and it is affecting us all. I just feel so helpless.
He is still sleeping this morning. Thats the one time that things seem somewhat normal this week. Kara is out of school and anything she says or does seems to wear on his nerves. Kindof like being in the past of a disaster. I feel sorry for her too. This is just so unfair to them both.
Hoping he will feel loads better when he wakes up. Its about time to have some good days. Thanks for stopping by to check on Devin. Please sign his guestbook and let us know you were here.
Wednesday, September 8, 2004
I hate writing entries like this. The pain is still there. He's still in a bad mood and I'm wondering when things will be better. I talked to the clinic yesterday and they agreed to up the meds to every 4 hours rather than 6, but it still isn't working.
Devin had some times yesterday where he felt like a human. We went out for a little drive yesterday and he even went into the grocery store for a couple of things last night. While in the store his legs gave out on him and I had to prop him up on the cart in front of me to get out of the store. Luckily Randy and Kara were out in the truck so Randy was able to lift him into the truck and finally into the house. This pain seems to be getting worse.
Wierd story. Talked to clinic yesterday and told them what had happened in the ER on Monday night. They asked who had suggested the IV of anti-inflammatories. I told them the dr's name and the nurse said she had never heard of him. I told her he was on-call over the weekend and I had never heard or seen him before either. She said it is clinic policy that none of the hem-onc kids get anti-inflammatories for ANY reason. (Anti-inflammatories will halt platelet production....and these kids usually are low in the platelet dept.) Anyway, the nurse asked around and NO ONE had ever heard of this doctor. This does not give me a warm and fuzzy feeling. I'm just glad I stood my ground and told the ER dr. NO to the IV. The nurse said he probably would have landed up in the hospital with bleeding problems if he had received it!!
Today I took Devin to the chiropractor and so far it seems to have helped. He's had another dose of pain meds and seems ok pain wise. He is in a horrible mood though. He just doesn't feel good enough for much of anything and anyone and everything seems to wear on him. I wish there was something we could do.
Not much else to report except his counts were good. I know the labs were artifically high from the steroids, but its good to see some decent numbers for a change.
Please sign Dev's guestbook and let him know you stopped.
Wednesday, September 8, 2004
I hate writing entries like this. The pain is still there. He's still in a bad mood and I'm wondering when things will be better. I talked to the clinic yesterday and they agreed to up the meds to every 4 hours rather than 6, but it still isn't working.
Devin had some times yesterday where he felt like a human. We went out for a little drive yesterday and he even went into the grocery store for a couple of things last night. While in the store his legs gave out on him and I had to prop him up on the cart in front of me to get out of the store. Luckily Randy and Kara were out in the truck so Randy was able to lift him into the truck and finally into the house. This pain seems to be getting worse.
Wierd story. Talked to clinic yesterday and told them what had happened in the ER on Monday night. They asked who had suggested the IV of anti-inflammatories. I told them the dr's name and the nurse said she had never heard of him. I told her he was on-call over the weekend and I had never heard or seen him before either. She said it is clinic policy that none of the hem-onc kids get anti-inflammatories for ANY reason. (Anti-inflammatories will halt platelet production....and these kids usually are low in the platelet dept.) Anyway, the nurse asked around and NO ONE had ever heard of this doctor. This does not give me a warm and fuzzy feeling. I'm just glad I stood my ground and told the ER dr. NO to the IV. The nurse said he probably would have landed up in the hospital with bleeding problems if he had received it!!
Today I took Devin to the chiropractor and so far it seems to have helped. He's had another dose of pain meds and seems ok pain wise. He is in a horrible mood though. He just doesn't feel good enough for much of anything and anyone and everything seems to wear on him. I wish there was something we could do.
Not much else to report except his counts were good. I know the labs were artifically high from the steroids, but its good to see some decent numbers for a change.
Please sign Dev's guestbook and let him know you stopped.
Tuesday, September 7, 2004
Where to begin?
Saturday was a good day. One of my childhood friends, Jami, and her family were in town for the weekend. We met them up by Timpanogas Cave and had a picnic and let the kids play around. Devin and Kara loved playing with Hannah and Seth and their cousins. It was a beautiful day. It was nice to see Jami and her family. Its been five years since they were in SLC. After the picnic we went in to Peppermint Place at Alpine. The kids love the candy factory.
Before we got home Devin was complaining about his back. He came home, took some drugs and relaxed for a while. He was worn completely out. It doesn't take much these days to get him down.
Sunday was uneventful. Devin lounged around most of the day and took his max of drugs. The steroids had him hungry so he actually ate his dinner. Randy grilled chicken. It turned out really good.
Devin woke up on Monday complaining of back pain. I gave him his medicine and it seemed to kick in. He was in a pretty grouchy mood, but was alright until dinner time. I gave him some more narcotics, but an hour later he was still writhing in pain. Grandma ran him a warm bath, but still no relief. Tried the massage chair...still hurting.
Randy called the on-call and got a dr. we had never met or heard of before...what else is new. Anyway, he said to give Dev 500mg of tylenol and give it 30 minutes. 30 minutes...no relief. The dr. says to give him another full dose of the oxycontin and see what happens. I'm nervous just thinking about the double dosing...the side of the bottle says 'breathing problems may occur'.....that alone scares me. Well, no breathing problems, but plenty of tremors.....hands, arms and legs. Bad. Randy makes another call and the dr. says to bring him into the ER.
Off to the E.R. we go. Devin is having an absolute fit. He says he wants to go anywhere but Primary Childrens. Somehow I believe him. He is tired of this. He is tired of the pain, of feeling bad and all of it. I know he is. We use our fast pass (green mask) to get checked in and into a room speedy quick. I make a mental note to myself to NEVER get rid of those awful masks....not only do they get you through the ER admitting process quickly, but they also make a great conversation starter..............................................................................................................................................................................
We spent a frustrating several hours in the ER. By the time we got there the tremors had settled down and the ER drs put their collective heads together and came up with.........NOTHING......Somehow I was not surprised. There was mention of giving him some IV anti-inflammatories....but I reminded them that the clinic DID NOT want him on anti-inflammatories for some good reason....my brain quit on me and I don't remember exactly what the reason was.....probably bleeding problem. Not sure.
Devin was in bed asleep by 1am, snug as a bug in a rug. He is still sleeping this morning and around here that can be a very good thing. It hurts to see him in so much pain and have no way to take it away. Its agonizing to know that the dr's are predicting the pain will be there, if not intensify, until he is done with this treatment. I hate cancer. I can't think of one good thing it has done.
Russ will be out at 1pm to do labs. I'm waiting to hear what the 'official reason' Devin can't have anti-inflammatories is from the clinic. Needless to say, I'm not expecting to hear from them anytime soon. Its all a waiting game. Every last bit of it. Its a tiring game too. Just when you think you have things figured out they change the rules on you.
Devin scares me. He is too smart to keep his mind from understanding why he is having this pain. He is also smart enough to know what could happen if he goes off of treatment. He told me yesterday that he is afraid the cancer is coming back....he just had a sense of it. I just hugged him and told him I hoped not. I hoped it would stay away and leave him alone and let him live his life. He is ready to get on with things. He is ready to be an active little boy again. I'm ready. We all are.
Thanks for stopping by to check on Mr. Devin. He appreciates your messages, so please do us both a favor and drop him a line.
Friday, September 3, 2004
Well the back pain is back. Again.
Devin's visit to the new physical therapist was great. Kevin was a super-nice guy with loads of ideas on getting Devin feeling better. He really had Devin working over-time and Devin was having so much fun he didn't realize he was working. It was fun!!
Wednesday night Devin started chilling. He took a hot bath and put on sweats. He had lots of pain in his calves. I'm assuming it was from vincristine. I gave him some oxycontin and he finally fell asleep until Thursday early afternoon.
Yesterday was horrible. He had cold-like symptoms and miserable. He hurt everywhere and was panting and saying his chest hurt. We made a rush trip up to clinic and his stats were good. He was sent for another chest xray and it was good as well. The dr said its probably chest wall pain from the vincristine. Dr. B. said that we could up his oxycontin. As long as we keep him doped up he is able to walk around and feel okay.
Yesterday was an enlightening day in clinic. The dr. gave us way too much information and left us all feeling a bit more discouraged than when we went in there. This cancer stuff is just so unfair. I hate cancer and what it has done to my baby boy!!!!!!! He does not deserve this. No one does.
Devin will be participating in the "LIGHT THE NIGHT" walk on September 18th. If you are in the Salt Lake area and would like to join "Devin's team", or would like to make a donation please contact me. Checks can be made to the Leukemia Lymphoma Society. Any and all donations are appreciated.
Dev's mailing address is:
Devin R.
PMB #429
6914 S. Redwood Road
West Jordan, UT 84084
Please drop Devin a line and let him know you stopped. Thanks.
Wednesday, September 1, 2004
Here we go again....this is my 3rd attempt to update and I'm getting a little frustrated. Being a little frustrated is what kept me from updating when we got home from our excruciatingly long day at the oncology clinic!!
Well, Devin went in for vincristine yesterday. No one seemed to know why we were there...and evidently didn't think we knew either. We were asked 3 times, by 3 different nurses if he was 'emla-ed' and ready: YES..all three times.
Anyway, saw three different doctors and pretty much got the same opinion. No one seems to know what to do about the back pain. Devin woke up late on Monday, in pain, and asked me to get him into a chiropractor. I did, and he is feeling much better. Due to go back on Thursday. Anyway, the dr's thought the chiropractor option would be ok; plus it seemed to help his walking.
After 2 hours of waiting, Dev was accessed and labs were drawn. The dr told me that Devin's counts were staying constant, but come to find out the clinic was 'missing' the last 2 CBCs from their charts. Most of the clinic visit was spent playing 'lets update Devin's chart with his mom's records'. Seems like that is what most clinic visits are spent doing. I'm wondering now if it is done on purpose so I will forget the questions I have.....probably not, but it feels that way.
Anyway, the dr said we could keep his oral chemo at 100%....trouble is, it hasn't been at 100% since mid July. On July 23rd he was neutropenic and taken off of all chemo. A week later he was put up to 50% and on the 17th of August he was increased to 75%. This was all news to the doctor....good thing I had all of this written down so they could get that updated as well....oh, and I remembered to tell her about the seizure activity, MRIs, etc. Geez.
The dr. decided to put him at 100% and see what his counts will do. Russ will be out next week to do a CBC at home. Hopefully Devin's counts will remain constant and he can start thinking about going back to school. As long as his counts are so jumpy they don't want him around lots of kids; me either. My worst fear is him back in the hospital with some type of illness. I want our hospital days to all be behind us!!
Devin got 50% of his vincristine dose due to a still quite noticeable foot drop. Vincristine is one of those drugs that I learned to despise long ago. It is so mean. They said if his walking improves they will plan on knocking him up to 75% next month. Wait and see.
He has PT this morning with a new therapist. He is looking forward to it. I'm hoping his back stays feeling good because its really hard to get him motivated to do much when he feels so rotten. I can't imagine the pain he goes through when he feels so bad. Its so unfair. This is certainly not what we had planned for this little guy. Maybe someday we will know why he needed to be so strong and brave.
Thanks for stopping by to check on Mr. Devin. He appreciates your kind messages and support, so please take a minute and drop him a line. Have a great day...
Monday, August 30, 2004
Its Monday again....these weeks seem to be flying by. I'm not ready to say good-bye to summer just yet. Doesn't seem like we've had our fair share of warm weather around here!
Dev had a good day Saturday. He, Randy and Randy's dad went to a really cool car show out at South Towne expo center. Lots of really neat, old, expensive cars. Devin took loads of pictures. He LOVES cars...the pricier the better. Seems like he told me he saw at least 5 Ferrarris. He loves Ferrarris.
Sunday wasn't all that great. Devin is being tapered off of the neurontin completely and has quite a bit of pain. The oxycontin isn't cutting it and the addition of tylenol is proving useless. He was pretty out of sorts most of the day yesterday, but did talk him into getting out of the house for a little drive.
He wanted a Blimpie sandwich, so he said. I found a Blimpies open in Sandy and he ordered his sandwich and some potato soup. He ate a little soup, but left the sandwich untouched. Kara, on the other hand, thoroughly enjoyed her sandwich and let EVERYONE know it. It was pretty much like the scene from 'When Harry Met Sally'. Who knew my daughter was such an actress. If only a talent scout had been around to catch her performance. She was in a super silly mood yesterday.
We came home yesterday to more entertainment from Miss Kara. She somehow coaxed Willie (the black lab, who until now knew absolutely NO tricks) to sing!!! We were all dying out laughing. It was the funniest thing I had seen or heard in a long time. Kara seemed to have many tricks up her sleeve yesterday to lighten the mood. She is lots of fun to have around.
Dev was up in the night with his back. The clinic doesn't want to start him on any new meds until this neurontin is out of his system. He got his final dose today. He has labs and chemo tomorrow. Hopefully the dr's have had time to put their heads together and get a plan for him. It is hard to think of him having the endurance to do much of anything; much less his wish trip to WDW, anytime soon.
Thanks for stopping by to check on Mr. Devin. Hopefully today will be more manageable. He wants to do things...just his back doesn't want to cooperate. If you have a minute please stop and see our little buddy, Boogie. He is still in the hospital. He is having yet another test this morning. www.caringbridge.org/ok/boogieman
Thanks
Saturday, August 28, 2004
Yesterday was a crappy day for Devin. He slept and slept and slept. Finally I was able to wake him up about 12:30. He was in pain because it had been so long since he had any meds. He got up, took his meds and said he was freezing. Not a good sign.
Before I knew it, he was lying on the couch, covered in blankets. He was really acting a little strange; not like himself at all. He started talking, but was NOT making any sense. He kept repeating himself over and over again. Not right.
He walked with grandma to pick up Kara and kept sitting down and talking nonsense. I called the clinic and they said a dr. would call me back. About an hour later she did call. She felt like it was the neurontin making him act so strange. She said 2% of the population cannot take the drug because of bizarre psychological side-effects; which included the things I was telling her about.
So, we are to watch him closely and take him in if things get worse. They are tapering him off of the neurontin over the weekend. He can still take the oxycontin and tylenol for pain; but thats it. We will just see how the weekend goes.
We are supposed to go to the Make A Wish rubber ducky derby today. They sell these rubber duckies then set them off in a water park to raise money. It is pretty chilly this morning so I'm not sure if we will make it or not, plus Devin is still sleeping.
Yesterday was a very frustrating day. It is hard to watch your little guy who has been through so much exhibit some NEW problems. It seems like every time we think he is on the right track something else happens. I just feel so helpless about everything.
Lets hope today is a better day for everyone. Thanks for stopping by and if you have a minute, please sign Devin's guestbook. He enjoys the messages and so does the rest of the family. Thanks.
Friday, August 27, 2004
Yesterday wasn't quite as good of a day for Devin. He just wasn't himself...or I should say, his before cancer, having no pain self. Its wierd how quickly things change around here. No fevers or anything, just something not quite right.
We skipped the methotrexate last night. Kindof an accident, but we will make it up tonight. I'm hoping he is more cheerful and feeling better today. It seems every day is just so unpredictable. He'll be walking around fine, then BAM his color is gone and he is slouching around trying to get comfortable.
He is going to try and go to scouts this afternoon. He wasn't able to go last year due to the intensive chemo, but this year he is healthier and should be able to participate in most activities. It is a small group of only three boys that meets across the street. It will be good for him if he's feeling good.
No other news here. Our little friend Noah is out of the hospital and feeling a little better. www.caringbridge.com/mn/noahhurley Our buddies, Robin and Jaxon, are still not feeling so good. www.caringbridge.com/mn/jaxon Kayla is neutropenic, so cannot go to school. www.caringbridge.com/hi/kayla These poor kids. It seems like life is going along pretty good, then BAM something else happens.
Please sign the guestbook and let Devin know you were here.
UPDATE: Just checked Dillion's site and he has been admitted to the hospital. www.caringbridge.com/ok/boogieman
Thursday, August 26, 2004
Good Morning!!
Devin had another good, uneventful day yesterday. Never once did he have to ask me for pain meds. I gave him all of his drugs according to schedule and they seemed to cover it. I am so glad. It is nice to see him feeling good and smiling more.
We spent yesterday at home with Devin working on pictures and descriptions of the 'super-vehicles' he is planning on building when he grows up. He is really fascinated with cars (and ninjas and airplanes) right now. I'm sure a psychologist reading this would say something like 'he is building himself up to be powerful'. I'd have to agree with that.
Speaking of counseling, I am STILL working on getting him someone to 'talk' with about his feelings. I have made numerous phone calls without success. Maybe today we will make some contact.
Also, still waiting to receive Devin's stuff in the mail about the 'Light the Night' walk. He asks me everyday when it is going to get here. Good question. I should probably call on that stuff again today. Its less than a month away.
Not much else to report. Our little buddy, Noah, is still in the hospital. www.caringbridge.com/mn/noahhurley
Thanks for checking in on Mr. Devin. Hope you all have a great day AND don't forget to sign the guestbook. Every little message means alot.
Wednesday, August 25, 2004
Another ok day yesterday. A lazy day, but a pretty good day nontheless. The clinic called and said NO to increasing the dose of oxycontin. Instead they told me to try giving him tylenol for breakthrough pain. Hopefully the neurontin will kick in and take care of things for him.
It seems so wierd that Devin is fast approaching his year anniversary of being diagnosed. On this day last year we were driving home from hiking Yellowstone. We had been told by more than one doctor that Devin had asthma. I remember Randy and I talking as we drove home about getting this 'asthma under control'. Devin had a good time on the trip, but was just so tired all of the time. Not like himself at all; sleeping more, trouble breathing, trouble concentrating and those horrible night sweats.
It is just unreal that less than a month later we would find out that all of the asthma meds in the world were not going to help Devin. The mass growing in his chest was slowly collapsing his lung and making breathing (and concentrating) very difficult. We are just so lucky that something didn't happen while we were hiking. I can remember on more than one occasion on our trip that Randy had to carry Devin.
Needless to say, the closer we get to 'the day', the more the memories of this come flooding back. We feel so lucky to have Devin here with us. His story could have easily not turned out to have a happy ending.
For now he is in remission with just 13 more months of chemo to go!! It has been a long road; actually more like a roller-coaster ride, but we are so glad to have had the opportunity to keep this little boy here on Earth with us. He truly is our sunshine and I cannot imagine life without him here.
Thanks for stopping by to check on Devin. We're hoping for another pain-free, smiley day around here!! Please sign the guestbook and let him know you stopped.
UPDATE: Our little friend Noah was admitted yesterday with fever. Please go by his website and offer your support. www.caringbridge.com/mn/noahhurley
Also, our little buddy Jaxon and sister Robin aren't feeling so great:
www.caringbridge.com/mn/jaxon
Wednesday, August 25, 2004
Another ok day yesterday. A lazy day, but a pretty good day nontheless. The clinic called and said NO to increasing the dose of oxycontin. Instead they told me to try giving him tylenol for breakthrough pain. Hopefully the neurontin will kick in and take care of things for him.
It seems so wierd that Devin is fast approaching his year anniversary of being diagnosed. On this day last year we were driving home from hiking Yellowstone. We had been told by more than one doctor that Devin had asthma. I remember Randy and I talking as we drove home about getting this 'asthma under control'. Devin had a good time on the trip, but was just so tired all of the time. Not like himself at all; sleeping more, trouble breathing, trouble concentrating and those horrible night sweats.
It is just unreal that less than a month later we would find out that all of the asthma meds in the world were not going to help Devin. The mass growing in his chest was slowly collapsing his lung and making breathing (and concentrating) very difficult. We are just so lucky that something didn't happen while we were hiking. I can remember on more than one occasion on our trip that Randy had to carry Devin.
Needless to say, the closer we get to 'the day', the more the memories of this come flooding back. We feel so lucky to have Devin here with us. His story could have easily not turned out to have a happy ending.
For now he is in remission with just 13 more months of chemo to go!! It has been a long road; actually more like a roller-coaster ride, but we are so glad to have had the opportunity to keep this little boy here on Earth with us. He truly is our sunshine and I cannot imagine life without him here.
Thanks for stopping by to check on Devin. We're hoping for another pain-free, smiley day around here!! Please sign the guestbook and let him know you stopped.
Monday, August 23, 2004
Today was good. Seems unreal.
Devin slept in this morning while I went and worked in Kara's classroom. Russ came over at 1 today and took his blood. I was right; the platelets were down a bit, but everything else stayed the same.
Clinic called with the lab results a few HOURS AFTER I had received the results from home health. I still haven't figured that out, but glad the labs were pretty good. The clinic nurse was asking me about changing Devin's oral chemo dosages. (She was asking because Dr. L. had not bothered to write anything down) Anyway, I told her it was to stay the same (75%) until at least next week when he goes in for the dreaded vincristine. She was fine with that. She was going to talk to the dr. and see if we could get the oxycontin dose up some. We shall see.
All in all an uneventful day at the Ross house. Devin and I went to the library so he could get some books on his latest obsession; Ninjas. He still loves planes and cars, but for today he is interested in learning more about ninjas. Great for us. He has been reading lots and practicing his ninja walk, which means he is very calm, cool and collected.
The rain continues here in SLC. Today's high temp was just under 70, so it has been a bit like fall today. It will be cool again tomorrow so Kara can wear one of her new sweaters to school for picture day....now if she can just decide on which earrings to wear!!
Thanks for stopping by to check on Devin. Its been another good day here. We sure take them when we can. Please sign the guestbook and let Devin know you were here. Also, if you have a minute, please go and visit some of his caringbridge friends.
Sunday, August 22, 2004
Two good days in a row...I almost hate to brag!!
Devin has been feeling good today. We went on a picnic at lunch...barely missing a downpour!! We left the park just in time. It was good to see the kids out playing and having a good time.
After the park we stopped by the pharmacy to pick up EIGHT prescriptions. Wow...thank goodness I didn't have to get all of his meds refilled. Also, good to hear that the prescription part of our insurance has NOT changed. Thats certainly good news. Also one of Devin's drugs became available as generic this week...so wow, what an exciting day!!!!
I can't believe how these little things like this can make such a huge impact on our days, but they certainly do. Thank God for small favors.
Devin worked on the school work I picked up for him on Friday. He still doesn't have a tutor so I guess 'I' am it!! Seems like this is a violation of his educational rights, but also seems like he's got bigger problems right now. Still, it seems like the kid should be granted a tutor.
Kara seems a little sniffly today. She fell asleep on the way home and sounds like she has a scratchy throat. Hopefully a good nights sleep will do her good. She lost a tooth Friday at the fair and left a letter to the tooth fairy to please leave money and the tooth. Every night she sticks the tooth back in her tooth box and re-checks for money the next day. So far her scheme has not worked....wonder why???
Kara told me that the tooth fairy should have more than enough teeth. She is tired of never seeing her baby teeth again, so that is why she wrote the note. Devin told her that the tooth fairy has built a city out of teeth. All of the teeth now are being given to homeless people. He can sure come up with some crazy stories. He seemed to believe it though...of course Grandma said Kara's little bitty baby tooth wasn't going to do a grown up person much good. He still stuck to his story.
These kids are funny. Devin keeps wanting to go and visit Russ' house (the HH nurse). He is wanting to 'adopt' Carson, the baby, because "he really understands me, mom". I said Devin he just smiles and babbles at you. Yes, "he is agreeing with me". I guess thats what anyone wants..someone to listen, smile and agree. Maybe we should take him on. I bet after a couple hours of chasing him around Devin would be exhausted. I know I would be. He is one busy (and cute) kid!!
Russ will be out tomorrow for labs. This will be the first time he has accessed the new port. Hopefully the labs will be up, but we are prepared for anything. I say that and if they aren't so good...trust me, I will not be prepared!! It is depressing. You try to look at the kid and guess.....if I was guessing, I would say platelets are down, everything else is probably about the same. Tune in tomorrow for the 'official' report.
Thanks for stopping by. Hope you all had a good weekend. Please sign the guestbook and let Dev know you were here!!
Sunday, August 22, 2004
Good Sunday Morning!!
Devin is still sleeping in this morning, so I'll take a minute to update his site. He had a good day yesterday and got to go to the car show. He loved looking at all of the cars. The event was a lot bigger this year.
We went to the car show for a little while, then loaded up and took Kara to her first modeling stint. She was asked a few weeks ago by a local store if she would like to participate in their 'fashion show'. She readily agreed; which kindof surprised me, but hey, I've been surprised many times over the past year. She did really well and even got some new earrings out of the deal; hows that for pay??
After Kara finished we drove back to the car show and walked around a little while longer. Devin just couldn't get enough of the cars. The weather was cooler when we went the first time, so he didn't last as long on his second trip. He did have fun though. Its always good to get him out walking and getting some fresh air and exercise.
By the time we got home he was pretty wiped out. He and Kara got in the pool for a while. It wasn't that warm, so dad once again rigged up the hot water for them. They had a good time doing their swimming 'races'. Needless to say, we have been watching a lot of Olympics around here!!! Everything at our house is a competition these days.
Devin's pain was pretty well managed most of the day yesterday. We upped the neurontin to 300mg, 3 times a day and along with the oxycontin he seemed pretty good. We're just hoping for another day as good as yesterday.
Thanks for stopping by to check in on Mr. Devin. He appreciates your messages so please drop him a line.
Saturday, August 21, 2004
For the most part yesterday was a better day. I was able to work in Kara's classroom, while Devin and Grandma stayed home. After Kara got out of school Devin said he felt up to walking around the county fair so off we went.
Dad bought the kids wristbands for the rides and they had fun going from one little ride to the other. Devin amazed us all when he climbed the giant slide stairs several times to ride down on a burlap bag. We stayed a couple of hours walking around and letting the kids ride the rides. By the time we left Devin was hurting and anxious to get home.
After eating some pizza at home Devin began throwing up. He threw up a few times and complained of a 'really bad' headache, but no fever. He went to bed early and slept well through the night.
He is up this morning and feeling ok. He doesn't admit to pain very often, so we really have to watch him. He has been wanting to go walk around a car show up at Gardner Village that is going on today so we'll just have to see how it goes. So far, so good for today.
I increased the neurontin to the max dosage starting today. Hopefully that will make him feel good plus allow him to stay awake through the day. He's still taking the oxycontin, but can only take it every 6 hours. Seems like the pain gets ahold of him before the 6 hours is up and the drug itself takes about 30 minutes to kick in for him.
Thanks for stopping by to check on Mr. Devin. So far he is looking and acting good today. Just hoping the day stays good for him. Hope you all have a good weekend. Please sign Dev's guestbook and let him know you stopped.
Friday, August 20, 2004
Surely today will be better than yesterday.......but I'm really not counting on it. I'm so glad that for the past several months we were told of the maintenance phase to be so 'great'. I think we had ourselves convinced that once Devin went onto maintenance it was smooth sailing....that has not been the case.
Yesterday Devin slept and slept and slept. I tried waking him up for drugs many times...trying to get ahead of the pain, but he wouldn't wake up. Finally about 1:15 he woke up with out of control pain with an attitude to match (I can understand this....just doesn't make it much fun anyway).
I got him his drugs and talked him into trying a massage. I got him an appointment for 2pm and took him in. By the time he and I both got a massage he was really acting good. Walking upright and smiling. Good to see. Within a couple of hours he was screaming in pain and begging me for drugs. He looked flushed so grandma took his temp; 99.5. Not good, as Devin usually runs VERY low.
While this is a temperature for Devin I didn't bother calling clinic. So what if a kid has slept for 15 hours straight, can't sit upright and has a temp (for him)....they quite honestly don't care. No one cares. Unless he is threatening to die on them, they just don't take him seriously.
Within a couple of hours I was able to give him some drugs. Within about 30 minutes the oxycontin finally kicked in......and the fever was gone. It was then I remembered the 'no tylenol' with fever, law of the clinic....but wait, I don't have to feel bad, because 1. He didn't have a fever by their standards and 2. I actually got rid of his pain and suffering for a little while.
Devin started feeling and acting more like himself with the drugs. Nice that you have to keep your kid doped up in order for them to be able to stand themselves. I really feel good giving my eight year old drugs that could knock out my husband. Wow, this cancer stuff is fun.
On a better note, while he was pain-free he did get on his bike and ride for a little while. We even rode over and talked to Russ for a little bit and let the dogs play. The fun was short lived though and pretty soon he was begging for more drugs. He has NEVER begged for drugs until this back pain took over. I'm not having such a good feeling about the neurontin right now. The neurologist was a little skeptical as well, but thought it was worth a try.
Kara's school is not going so great. The teacher seems a little un-motivated (this is a nice way of putting it). Anyway, supposed to work in her classroom yesterday, went over to find out he 'forgot' the reading specialist was coming in....ok...so he asked me to come at 9am this morning. No problem...take Kara to school at 8:25 and find something useful to do until 9am. Luckily I was standing talking to the kids before the bell rang and the teacher asked me to come in at 10:30 because he 'forgot' they were going to the library this morning. No problem........so home I came.
Come home to Devin waking up crying from his back. Not a good way to start the day. I got his drugs in him....going to try and get some pain management going here today......and got him back to sleep.
Trying to check on our caringbridge friends with a computer that for whatever reason does not want to cooperate. Surely the day will get better. I don't ask what could happen next...I've found out one too many times. In case you can't tell I am just a little bit frustrated. Frustrated that Devin has seemed to puzzle the clinic once again with this back pain, so another out of site out of mind.
Seems like everyone would just like for this cancer and all of its side effects to just go away, but guess what....the one taking all the crap is Devin...and the many other kids that deal with this stuff on a day in and day out basis. They are brave kids. This is a tough battle and one that he will win.
Thanks for stopping by to check on Dev. I'm hoping he wakes up in a while feeling like a new kid.
Thursday, August 19, 2004 11:03 AM CDT
Evidently I bragged too soon. Devin felt good most of the day, went to physical therapy and even wanted to ride his bike for a little while last night. By bedtime he was BEGGING me to give him drugs for his back....not like him at all. Sad thing was he wasn't due for any more and had to wait a couple of hours.
Physical therapy was ok. Dev was a little disappointed because he basically did the same things he had been doing with us at home. He was hoping to get to work on the treadmill or something else new and exciting. Maybe next time. He's supposed to go back in a couple of weeks.
Russ called last night to tell Devin 'Thank You'. Monday was Russ' birthday and we just about forgot about it. About 9pm I looked at the calendar and Devin called, got his answering machine and sang him Happy Birthday. Russ was really happy that Devin remembered....now to get over to Russ' house and give him his gift.
This morning Devin is sleeping in and I am working on hospital bills....thats always a fun job. Lucky for us, Randy's company decided to change policies July 1st, so we have been inundated with 'surprise' bills. Needless to say I am getting a little tired of these surprises bombarding my mail box....just when I think I've got everything squared away, the post office drops off more.
Speaking of insurance, I just got a call from our insurance case manager. Looks like our new policy will not pay for Dev's PT at this particular place. I need to get some phone calls made and get him set up somewhere else.......this insurance stuff is a full time job!!! I think I'll skip getting in the mail today...just in case!!
Hope you have a great day. Thanks so much for stopping by to check on Mr. Devin. He appreciates your messages, so please drop him a line.
Wednesday, August 18, 2004
Yesterday was a good day for Devin. I upped the neurontin dosage and it seemed to help. He didn't complain once about his back. It was nice to see him feeling good and smiling so much. He was in a very happy mood.
Today is the start of physical therapy. He is so excited. Mainly he's excited because its not up at PCMC. He will go to an outpatient clinic over in Sandy. He is burned out on the hospital. I know what he means. We all feel a little burned out on that place.
I'm still waiting to hear on the "Light the Night" walk that Devin is interested in doing. Also, still waiting to hear about a tutor for Devin. He keeps asking me every day when he will get a teacher. Yesterday he did LOTS of work at home; practicing his cursive writing and some math problems. He loves having something to do.
Not much else to report. Hoping today is another good day for Devin. Thanks for stopping by to check on him. He appreciates your kind messages, so please drop him a line. Thanks.
Monday, August 16, 2004
Today was a LONG day. I got through to the neurologist office around 10am to try and set up an appointment to talk about this neurontin. The first opening was at the end of October, then the girl said they had just had a cancellation for 11am today!! I told her to sign Devin up and we would be there.
I rushed around and got Devin dressed, drugged up and packed for a day at the clinics. Don't want Devin getting bored or hungry while we're away for the day. We barely made it up there in time, but we did it. So much for letting Devin sleep in this morning.
The neurologist reviewed the spinal MRI and said the neurontin dosage needed to be increased. He is currently taking 300mg and the neurologist upped him to 900mg. He said that he wasn't sure it would work, but it was worth a try. We'll give it a few weeks and re-evaluate.
Clinic accessed Devin with no problems and drew labs. He was then sent down to radiology to get his MRI done. I checked him in and was told the tech was running behind. No problem, I told her we'd wait outside since Devin was set up to be scanned in the portable out in the parking lot.
After sitting in the courtyard waiting to be taken into MRI for over a half hour, the tech came out looking for Devin. He acted surprised that we had been waiting....and acted as though he wanted to re-schedule. Anyway, we told him Devin was accessed and PAST ready to be scanned. MRI went well, but took about an hour, rather than 30 minutes.
A little after 2pm we went back to the clinic. We actually saw Dev's dr...which was a big shocker. I cannot remember the last time he took a look at Devin. Anyway, the MRI is good; which is a big relief. He said the breakdown in his spine is most likely from the steroid/vincristine combo and SHOULD get better when Devin is off treatment (13 more months).
We left with more questions than answers...once again. Glad to know his hips are clear and the avascular necrosis has been ruled out. Not glad to hear that their is only a small chance that upping the dosage on the neurontin is going to bring any relief. Another one of those watch and wait situations.
Counts were decent. He is still on oral chemo at 75% and is scheduled to get counts done at home next week. He looks good and other than his back has no real complaints.
Thanks for stopping by to check on Devin. HE appreciates your nice messages, so please drop him a line.
Monday, August 16, 2004
Another Monday...
Devin is sleeping in. I'll let him sleep as long as he can. He was up in the night with his back again. He finally got settled down enough to go to sleep around 1am. I know he has a high pain threshold, so he is hurting.
He rode his bike for a little while yesterday. Thats probably what got his pain started up again. I don't know. He seems to hurt whether he does anything at all. He's on the neurontin 3 times a day now; as well as the oxycontin.
Today is the MRI of his hips. This is the third week in a row he has had an MRI. Hopefully his hips will be clear, although it wouldn't surprise me any if they weren't. He's been having groin pain for a while and they say hip pain radiates to the groin. We shall see. His appointment is at 12:30. He goes in at noon to get accessed and get labs drawn.
Kara's off to another fun-filled week in the first grade. She was anxious to get to school this morning and show off her new perm and the bird egg she found last night on our walk.
Thanks for stopping by to check on Mr. Devin. He appreciates your messages of encouragement, so please drop him a line. Thanks...
Sunday, August 15, 2004
Today has been an all right day around here. Devin has felt better today than Friday or Saturday. We are thankful for that.
Friday Devin did get up and go see Kara get her award. He was really proud of her. She is one of the first students of the year to get an award. We were all really happy for her.
We picked Kara up from school early (she gets out early on Friday anyway) and went on a picnic. We drove up to Alpine to go to the candy factory, but wasn't that great of a trip. Devin fell flat on his face at the park, then when we went to the candy factory their air-conditioning had gone out and they were shutting it down early...so no candy.
I took Kara to get a perm on Friday evening. She looks so cute. She is really happy with her new 'do'. It was a long process, but she said it was all worth it.
Saturday was basically a nothing day. We went to a few open houses and found an absolutely beautiful house that we really liked. If only we were millionaires we would have bought it. It is close to Randy's boss' house and is huge. Doesn't cost anything to look and dream.
Yesterday Devin's back was pretty bad all day. He enjoyed getting out to take his mind off of it. He took the oxycontin for the first time yesterday and it didn't seem to do much for him. Today he has been good with just the lortabs.
Randy and Devin built one of his model airplanes this afternoon. He got quite a few for his birthday and he is wanting to get them all put together and hang from fishing line in his room. Right now I have all of his bandanas (there's a bunch...from when he was bald), tied together and hanging across his room. His room is packed with all of the cards and stuff people have been so kind to send to him since this cancer was discovered eleven months ago.
Thanks for stopping by to check on Devin. Tomorrow will be the MRI of his hips, so we are hoping and praying that will be clear. One thing is for sure, we need to get his pain under control and figure out what has done this to him.
Thanks so much for stopping by to check on Mr. Devin. We appreciate your kind messages, phone calls and cards. If you'd like to send Devin something in the mail the address is:
Devin
PMB #429
6914 S. Redwood Road
West Jordan, UT 84084
Friday, August 13, 2004
Happy Friday the 13th!!
We will go this morning to see Kara get her Principal's Pride award. She is so excited. I'm hoping Devin will wake up and feel like going. It would make her feel good if he was there to see it.
Last night was methotrexate night. He is at 75% on his oral chemo now, so he took the 7 pills. Also, the neurontin uppped yesterday to two pills. Today it will go to every 8 hours. I have no idea what to expect. He may be stuck in bed today. Every day is a new day so we'll just have to wait and see how it goes.
I guess my last updates were pretty unclear as to what the dr's think is happening to Devin. Their best guess is a condition called avascular necrosis. This is basically death of the bone. It usually starts in the hips, so he will have an MRI of his hips done on Tuesday. If his hips show signs of bone damage/break down they will most likely call it avascular necrosis. If NOT, then they will just blame it on the chemo and then want to give him more.
Steroids, which these cancer kids get a lot of, cut off blood supply. The LPs (lumbar punctures) were methotrexate directly into the spine....basically where the damage is showing up (L3, L4 and L5). Anyway, either way, the news is not good. This avascular necrosis sounds just awful, as does any of this stuff. The xrays show us that there is indeed a reason Dev has been having back pain. Now, that he has 'proven' his pain to them, he is able to get some drugs that hopefully will help.
Devin is a strong kid. He doesn't normally complain outright. We have to really watch him and his behaviors to know when something isn't right. He wants to stay as far away from the hospital as possible, so many times he will let pain get completely out of control before we know he is hurting. Poor kid.
Anyway, hopefully today will be a pain-free day for Devin. We appreciate all of the phone calls, e-mails and guestbook messages regarding Devin. The letters, packages and cards are real pick me ups when Dev is feeling so down.
If you'd like to send Devin mail the address is:
Devin R.
PMB #429
6914 S. Redwood Road
West Jordan, UT 84084
Thanks for checking on Devin today.
Thursday, August 12, 2004
An OK day around here. Devin got up early and has been being pretty lazy today. He and Grandma spent the morning together while I went over to work in Kara's classroom. That was a lot of fun. The time went by really quickly.
I did get a call back from the neurologist's office yesterday. The dr. Devin saw is out until the 16th, but the dr. on call said the dosing on the neurontin would be fine. He actually said it would be fine, sounded a little low for the final dosing, but he said it would be ok to start the meds. He did NOT look at any of the reports, but said the other dr. would and would want to see Devin again after he is back in town. Set up that appointment so the original neurologist can do another exam and see if he thinks the spinal thing is related to the walking problem. Watch and wait.
Got a call from the pharmacy that the oxycontin is in. They had to special order it in a liquid form since you cannot break up oxycontin pills and Devin needs a lower dose than the smallest pill. I've still got him on lortabs, but only every 6 hours today seems to be ok.
Thanks for stopping by to check on Devin.
Wednesday, August 11, 2004
We got home from the hospital late yesterday afternoon. It was quite a day at PCMC. Frustrating is a good word for it. Frustrating. Thats a nice way to put it.
Devin had his MRI. He was very good. The tech didn't even have to remind him once to be still. He is such a good boy. He is so used to doing exactly as he's told all of the time. I'm sure he must feel very out of control of his life.
We went back to the clinic after the MRI. The dr. came in and said she had one report, but wanted another radiologist to look at it. Ok, we left and got a bite to eat. It was a nice break to get out of there for a little while. Devin wanted potstickers so we went down to Gateway and ate at Z'Tejas. He ate really well.
Back up to the clinic. I had to drop Dev and Grandma off at the door. There is a lot of construction going on up there, so parking is even more limited. By the time I got back in Devin was feeling awful. I got the nurse to put us in a room and get him a bucket. He threw up and we began our wait.
Out in the hall I sam Dr. O'Smiley...this is not his real name, but it might as well be. This guy is just always happy. Too happy if you ask me...but then again he's not going through chemo. He tells me the MRI matches the bone scan done in June. WHAT??????????? Yep, you heard right, the damage was there in June and no one said anything...except "LOOKS GOOD", because Devin wasn't really complaining!!!!!!!!!!!!!!!!! &*%#@!!!!!!!!!!
I told him Devin had been complaining off and on with back pain for as long as I can remember and THEY ignored it!! Same as the foot drop....same as the headaches....everything is ignored until the problem is so out of hand......................This is my baby these people are dealing with!!!!!!!!! I was beyond mad and frustrated...but of course you have to keep it all inside because I don't want to upset Devin.
Dr. A. comes in and tells me exactly what I have heard in the hall. I tell her if this is the case that I am beyond frustrated with them. They ARE NOT LISTENING!!! She tells me that he needs an MRI of his hips since that is usually where the problem first begins....OK....seems like I had this conversation with her earlier. Set up an MRI appointment for next Monday for his hips.
So.......again we leave with more questions than answers. Two new prescriptions for some heavy duty drugs: Neurontin and Oxycontin. The pharmacist advised me yesterday that not only is the neurontin going to make Devin's WBC go down, but the dosage they've prescribed is going to make him VERY sleepy.......I had it filled, but put a call in this morning to the neurologist's office to question the authorities on this drug. I'm still waiting to hear back from them.
Just got a call from oncology advising me that since Devin's counts stayed the same from last week to up his chemo to 75% starting today....even though he threw up in their office and yesterday they didn't want to change the dose.......??????????????? Why does this not surprise me??? I know..because I am pretty much numbed out because of this whole experience. Nothing surprises me anymore.
Anything could happen and I will still keep fighting to get the best care I can for this little boy. We've hit roadblocks before with these people that are supposed to be helping. They have helped, they got rid of this cancer, but for hell's sake what have they done to him??
Won't you let Devin know you stopped by and sign his guestbook. He enjoys the messages and so do I.
Tuesday, August 10, 2004
I should wake Devin up and get him ready for the hospital. He is nervous I can tell about the MRI. He couldn't sleep for the longest time last night. I gave him a back massage, did the heat thing....and of course, round the clock drugs. It all seems so familiar.......
This is how the whole nightmare started back on September 17th.........................................aaghhh.
The MRI is today at 10:30.
Please pray for Devin.....
Tuesday, August 10, 2004
Dev is still sleeping this morning. He kept complaining of back pain last night and it took him forever to fall to sleep. He looks peaceful now and I'll let him sleep until we have to leave for the hospital.
I talked to my neighbor, Holly, last night about all of this stuff. She is a nurse for an orthopedic doctor. She has been so nice through all of this to try and make sense of what is going on. She has loaned me some more medical books to read up on what is going on.
Holly started talking about what was likely going on. It started sounding very familiar. I guess I was in total shock of the situation yesterday at the clinic. What we read last night is called avascular necrosis. Basically it is death of the bone. Steroids, which Dev has had more than his fair share of, cut off blood supply. Holly said that usually it starts in the hips.
After talking to Holly I started coming into reality and what was way over my head in the clinic began to make some sense. This stuff is awful!! It is awful, but I think, and maybe I'm wrong here, that this avascular necrosis is better than some other kind of cancer. I don't know anymore. I will just be hoping and praying for the best.
Thanks for all the notes in the guestbook and encouraging e-mails. We appreciate them all. Please keep Devin in your thoughts and prayers today as he undergoes this MRI and whatever other tests they feel are necessary.
Monday, August 9, 2004
Did someone say it was Monday??????
Or did they say that we're in the twilight zone??? Either way, this cancer stuff stinks.
Devin has had back pain off and on over the weekend. This morning he got up early and said he wanted to 'go shopping'. This IS NOT Devin. Devin doesn't care to go shopping. Anyway, took him to Sam's Club and he gets out of the car and is hunched over like an old man. He went in the store with grandma and I called the clinic.
After several phone calls back and forth (started at 10:30am) we were told to 'come right up'. I was told upfront that Devin's dr. wouldn't be able to see it.....big deal....I don't think "Devin's doctor" could pick him out of a line-up.
Dev saw Dr. A. today. First time we'd seen her in awhile. Of course, everyone, including her thinks Devin looks great!! Yes, but looks can be deceiving. He felt pretty crappy; even after being dosed up on lortabs. She sent him down for some xrays of his spine and lower back.
Xray took six views. Fast and painless. By the time we got to clinic I realized there was a problem. They took us right back into a room and told us that he was scheduled for an MRI with and without contrast tomorrow morning at 10:30am. Not good......MRI's usually take a while to get scheduled UNLESS there is something wrong.
The doctor and NP explained to me that the lower 3 vertebrae (there is a special name for this, but it escapes me now) are not right. They are not smooth as they should be and that is why Dev's back is hurting so bad. They need to know WHY this has happened, so the MRI should give them a clearer picture.
I had emla-ed him up before we headed up to clinic. I asked if the MRI was with contrast, Yes....so the nurse attempted to access him. No luck. Two sticks.....nothing. She tried her best, but no luck. She went to get the charge nurse who messed with him for what seemed like forever. She got a nurse from hemo to come in and access him. They used a longer needle and FINALLY got some blood!!! I felt so bad for him. This port has certainly not worked exactly as it should.
The charge nurse said since we have had so much trouble with it that she didn't want it accessed at home for awhile. I told her he was due for a CBC on Thursday (at home) to check his counts. They went ahead and took the labs while they were working on him to avoid accessing him again. I'm sure he will be very bruised up from today.
I didn't stick around to get the CBC results. We are due to be there in the morning, then to the clinic at noon for MRI results, so I will get them then. Devin was PAST ready to get the heck out of there and I was hoping to avoid rush hour traffic. We got home just around 5pm tonight.
Dev is accessed tonight, so no swimming until after they de-access him. Hopefully we will get some answers tomorrow. Kara was glad to see us when we got home. She was chosen to be "Principal's Pride" at school today and was excited to tell Devin the good news. Randy is in San Diego for SOFE conference for this week, so I am hoping things stay calm around here.
Thanks for dropping by to check on Devin. He appreciates your prayers and kind words so please, please, please drop him a line and let him know you stopped.
D
Saturday, August 7, 2004
Yesterday was not such a great day. One of those days where you wonder why you got out of bed, why you answer the phone and why you were in such a hurry to get in the mail. Not good.
This cancer crap is getting a little thick to wade through these last few days. Dev is on 50% meds still with low counts and no known reason why. He is looking more pale the past couple of days and just doesn't have much 'get up and go' in him. He's sick of cancer and I can't say that I blame him.
I can't remember Dev falling any yesterday, but then again he wasn't up much at all. Just not himself. He did eat a little more yesterday (thank you steroids), but just didn't feel like doing much. Luckily the gameboy still holds his interest when he doesn't feel like being up and around.
I know lots of kids have it worse than Dev right now, but honestly, he's eight years old....we've been doing this for almost a year now. He's sick and tired of feeling sick and tired....and as one website says; "The only thing worse than cancer is watching someone you love go through cancer." Its been one hell of a year.
Thanks for your kind words, prayers and support. As Devin's mom this caringbridge site has been just about the best thing I could have done during this difficult time. Please know that your messages; no matter how short or insignificant they may seem to you, do mean a lot to Dev and our family.
Thanks for stopping by. Please drop Devin a line and let him know you stopped............Have a great weekend.
Thursday, August 5, 2004
Good Morning!!
Yesterday was an OK day around here. Devin is still sleeping LOTS, but when he did finally get out of bed he was feeling good. He is missing Kara being away at school and feeling a little left out about the whole school business. I'm still waiting to hear when he will get his tutor.
For entertainment we went to Sam's Club yesterday. Devin loves gumball machines and got 2 new ones over the weekend. We went and bought some candy to fill them up. He is hoping someday to have a vending machine empire...along with his other plans to be a pilot, engineer, dad and vehicle designer. He has some big plans.
As we were walking around Sams Club he collapsed to the floor.....AGAIN. Seems everyday he is falling at least once with absolutely NO warning. Luckily the place was virtually empty so not many people saw him fall. He gets really embarrassed when he appears weak. He has such a strong will to be well and strong. I wish we knew what caused this. It is still a mystery and I guess until he gets hurt the issue will continue to be swept under the rug by the clinic.
After Sams Club we stopped by Target to get him a badminton set. We had been playing with some old racquets for the past week or so and they finally gave out on us. Grandma told him she would get him a complete new set, so he took her up on it. We'll set it up after he gets up and moving today.
Kara is thoroughly enjoying the first grade. She has made several 'best friends' and loves her teacher. He has nothing but good things to say about her and she does love that. She has been working on a fundraiser for the school and is trying hard to sell $200 worth of gift cards in order to win a limo ride. I'm going to take her to dad's office to sell after school. She's already been to see all of our neighbors.
Hopefully Devin will be up before too long feeling good. I'll be working on insurance problems today so I am sure hoping he wakes up soon so I have an excuse to do something more exciting. This cancer stuff is no fun.
Thanks for stopping by to check on Dev. He appreciates your kind messages so please drop him a line; it will only take a couple minutes of your day. Thanks..
Wednesday, August 4, 2004
Good news: The MRI is clear. Beautiful brain..nothing there that shouldn't be!! More good news: We were able to get 'everything' done yesterday to avoid another trip to PCMC today. The verdict: We still don't know why, if or when Devin had/or will have another seizure.
If you just stopped to get 'news', I advise you stop reading now. The following is just a 'part' of our incredible clinic day yesterday....mainly a gripe session. You are forewarned....
The rest of the story:
We arrived in the clinic at Devin's 3pm scheduled appointment. The nurse asked how the MRI went.....we told her it was at 3:30. We were at the clinic to get accessed, back tomorrow for chemo and results. Her response: Why not do access, labs, MRI, results and chemo ALL IN ONE VISIT??????? Great thinking.....seems like I TRIED to get that set up last week to more than one NO, NO, NO from these people.
So anyway, Devin is accessed, labs drawn and sent down for MRI. MRI goes extremely smooth. The tech remarks at "how good Devin looks". I agreed with that. Devin was looking very handsome in his Hawaiian shirt and hat. Last time Dev had an MRI he was looking pretty sickly.
After the MRI we go back to the clinic. The nurse advises me that she "has the chemo" and will be in shortly to give it. (I'm thinking, oh crap at this point, as I know a FULL dose of vincristine has been ordered......last week the neurologist said he wanted (if possible) for the dose to be cut).
Dr. T comes in and starts asking all the 'normal' questions. You know the ones like "which drugs Dev is on". (The ones you guys prescribed). "How did you come up with that dose?" My response, "This is the dose I was told to give him after he was put back on chemo." Dr., "Why was he off of chemo?" Me, "neutropenic". Dr., "When?" Me, "Starting July 23rd". Dr., "Well his counts are UP now, he can re-start chemo at 100%" (She hands me the labs) Me, "Actually, NO, they are down from last time" Dr., "No, they are up." (I get my handy dandy notebook and take out his last CBC results and show her his last counts that the clinic SHOULD have documented, but don't)
After going back and forth for awhile and getting Devin's hospital chart 'updated' thanks to my notes we proceed. Dr. decides to keep him on oral chemo at 50% due to low counts and re-check labs in 2 weeks. She announces that vincristine will be given at 100%. "What about the neurologist recommendations?" Dr., "Oh, you saw a neurologist? When?" We explain that they had received a copy of the report while we were up there last Wednesday.
Dr. goes through the paperwork and 'finds' the report. Decides to conduct her own 'neurological' exam. Yep, some serious foot drop/flapping going on. "Ok, we can cut the dose THIS time." I explain my frustration that TWO oncologists had tested Dev on Monday BEFORE he saw the neurologist and noted everything to be 'normal'. This foot flapping thing has been going on for months: basically ever since he has been on vincristine.
Anyway, she agrees to cut the dose. The nurse finds out, is unhappy, takes the 100% dose and leaves to re-order the drug. Dr. decides that Dev needs to see physical therapy. PT is brought in, leaves us some exercises for home and schedules some follow-up PT appointments. The PT person is pretty goofy, nice, but goofy. She basically tells us that everything the neurologist told us is a bunch of crap and this problem will not be 'long term' or 'permanent'. I told her I have friends (thanks to caringbridge) who would beg to differ with her 'expert' opinion. She also goes on to tell us it will be "no problem to cut that vincristine dose in 1/2 for the remainder of Devin's treatment." Anyway, in my opinion, she clearly was over-stepping her authority. Plus I'm sure the neurologist would LOVE to hear her talking about his line of expertise like that!!
I went out in the hall to get something to read as the nurse was coming up the hall with Dev's vincristine. She handed me an RX for blood draws to be done 'somewhere', anywhere.......some independent lab somewhere. She advises me that since Devin STILL has low counts that the Dr. has decided he needs WEEKLY blood draws, rather than the every 28 day cycle, or the every 2 weeks she had mentioned earlier. I asked why home health couldn't do the labs: "Your insurance WILL NOT pay for HH to keep coming out when Devin is doing so good." I then asked her why they thought he was 'doing so good' if we were doing weekly lab draws?? Also, wondered where she had got the info. about my insurance company........??????????
Anyway, Devin got his 1/2 dose of vincristine about 5:15, then we were to wait for him to 'see the Dr.' for the full exam that was supposed to be done BEFORE he received chemo. About 6:00 we got tired of waiting and decided we had been forgotten. Sure enough, we had. A lone nurse (not ours) found the Dr. and had her come and do a quick exam...then we were on our way!!! Hopefully not to return for another 28 days!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Needless to say, by the time we got out of there we were all exhausted!!!! Glad the MRI went so well and the results were so good, but actually left with MORE questions than when we went in. They still have no idea why Devin had the seizure. Don't know if or when it will happen again........who knows???
If you've read all of this give yourself a pat on the back. Thanks for stopping by
Tuesday, August 3, 2004
Just got home from taking Kara to school. She seems to be enjoying it and has made several new friends. She is going to try out the lunch room today so hopefully that will go well. So far she has been unimpressed with school lunch and has insisted on taking her own lunch.
Devin is still asleep this morning. He has been feeling good. He has fallen a couple of times, but no 'episodes'. Maybe it is the medicine. He is only on 1/2 dose right now and seems good.
He has an appointment in the clinic today at 3:00 to get accessed. His brain MRI is scheduled for 3:30. He is not looking forward to the MRI. That machine is so loud. He is going to take an Aerosmith CD with him to listen while he does the MRI.
We will get the results of the MRI tomorrow. He has another clinic appointment at 11am for chemo. Time again for the dreaded vincristine. Dr. L. should be back in town and hopefully he will agree to cut the dosage. Also, we will find out when Dev can start the physical therapy. Hopefully we can do it somewhere a little closer to home that PCMC, but we'll do what needs to be done.
Thanks for stopping by to check on Mr. Devin. He appreciates your kind messages so please drop him a line and let him know you were here.
Sunday, August 1, 2004
Good Sunday Morning!!
Devin is sleeping in this morning and Kara is watching 'Full House'. Ever since Mrs. Pam mentioned the show a few months back Kara has been addicted to it. She has been watching it every time she gets a chance. Its a cute little show for a six year old.
Devin has been feeling good this weekend. Its been pretty uneventful around here. Very hot yesterday so of course the kids did some swimming. Randy has rigged up a pool heater so hopefully it will warm up the water enough for mom and grandma to stay in the water a little longer.
Its very windy so far today with not such great air quality. I think there must be a wildfire somewhere, but I haven't seen any news or read the newspaper in a couple of days. Anything is possible.
I got Devin's home and hospital papers filled out while we were up at the hospital last week. I need to get them turned into the school tomorrow and get his tutor set up. He is excited to get to do some school work. As soon as we get his tutor schedule set up we can get the guitar lessons going again. Also, the clinic was going to get him set up for physical therapy. He needs some things to do. He is getting restless being home for so long.
Grandma watched the kids last night while Randy and I went out to dinner and a play with some friends. They took Grandma out to eat at Famous Daves for dinner. When we got home they had just finished watching Grease. The kids love that movie. We all had a good time.
Thanks for stopping by to check on Mr. Devin. He's looking and feeling good. We've got 2 appointments at PCMC this week: Tuesday for the brain MRI and Wednesday for chemo. We appreciate your prayers and well-wishes. Please drop Dev a message in his guestbook and let him know you were here.
Friday, July 30, 2004
Thanks for stopping by to check on Devin. He has been feeling pretty good since being off of chemo for a week. We will start him back at 50% dosages tonight. Hopefully he will tolerate it ok and still feel good enough to do some things he enjoys.
Last night we went over to Cold Stone. They were giving out Make A Wish ice cream cake and Devin wanted to see what it was all about. He didn't eat any cake, but was glad to see they were collecting money for Make A Wish. He got his usual ice cream flavor, as did Kara.
Speaking of MAW, I talked to Sam, one of Devin's wishgranters, yesterday. We have set the dates for Devin's MAW trip to Florida. We will be leaving on September 21st and coming home on September 27th. Devin is SO EXCITED to finally have the dates set up. We are just hoping now to get those counts up so he feels good and has the energy for the big trip. It is so exciting to think about it.
Not much else going on here. We are just hoping to have a relaxing weekend at home with no ER trips. Thanks for stopping by. Please sign the guestbook and let Devin know you were here. Also, the mailing address for Devin's mail is:
Devin Ross
PMB #429
6914 S. Redwood Road
West Jordan, UT 84084
Thursday, July 29, 2004
Devin slept in until noon this morning. He has been sleeping so much lately. He woke up for just a few minutes while the nurse was here (we had a substitute nurse; Russ is recuperating from surgery). Anyway, got the labs drawn after 2 pokes and he went back to sleep.
The labs are still wierd. His RBC's have all started dropping now, with a slight increase in his WBCs. His ANC has come up a little, while his WBC is only 1.5. The hospital said to put him back on his chemo starting tonight at 50% of normal doses. They are afraid he is probably getting sick; especially since he woke up with a runny nose, sore throat and cough.
This afternoon he did go to school with me to pick up Kara. Its good to get him out of the house even for a little while. He wanted to ride his scooter so I let him. He was tired by the time we got back home. It got hot here today!
The clinic wants to get him into physical therapy starting next week to see if we can get him strenghthened some. This was something that the neurologist had asked them to get set up for Devin. I think he will enjoy it. He went a few times when he had the clots in his brain and really enjoyed doing all the stuff.
All in all it has been an uneventful day around here. Thats ok, we are just glad to be home. Thanks for checking in on Devin. Please leave him a message and let him know you stopped......the guestbook is loading VERY quickly so it will only take a minute of your time and will be most appreciated!!!!
Thursday, July 29, 2004
Dev had a big day yesterday. The EEG appointment went smoothly. They glued, then taped 22 electrodes to his head then performed several tests on him. Finally after a while they let him go to sleep and sleep for about half an hour. He didn't like the stuff on his head, but who would?
We went by the clinic to see if we could get his labs drawn there. They were very busy, but were able to fill out some new home and hospital forms for Devin. Home health will be out at 8am today for labs at home.
We ate lunch down at the Gateway then went back to the clinic to meet with the neurologist. He was very nice and gave Devin a VERY thorough exam. I thought the neurological exam in the ER was thorough......this one was twice as detailed.
The neurologist said that the neurological exam was great, except for Devin's feet. He said he was assuming that prior to starting chemo that Devin would have had a great reflexes in his feet, but since he had not had a neurological exam prior to chemo there was no way of being certain. He said that Devin DID have some nerve damage in his feet. This is something that is very common with vincristine (chemo drug). He explained that most oncologists do not have enough training with neurological exams to know when enough is enough.
Devin had always had trouble right after receiving the vincristine with falling and such. The exam yesterday confirmed that there is indeed a reason for those falls. Evidently he does not have full feeling in his feet and may not be feeling exactly where he is stepping. The neurologist said this is all too common in kids receiving the vincristine. It is mean stuff.
The EEG results were good. The only thing is truly ruled out was epilepsy which we didn't think he had in the first place. The neurologist agreed with the oncology department that an MRI of his brain should be the next step. Just to be sure that there is nothing there that shouldn't be. That is scheduled for Tuesday, August 3rd, next week.
All in all, Devin did just great yesterday. He was so over-tired by the time he went to bed. It was a long day, but I do think we are making some progress. Since he is considered to be in remission the neurologist is going to talk to oncology and see about the possibility of reducing the vincristine dose. Dev is scheduled for at least 14 more doses. Hopefully they will agree to that.
Thanks for stopping by to check on Mr. Devin. He is catching up on his zzzzz's now, so leave him a message and let him know you stopped. Have a great day.
Wednesday, July 28, 2004
Devin has a big day ahead of him. Neurology has him scheduled for a sleep-deprived EEG at 9am this morning. We were told to keep him up until midnight last night, then wake him at 4am this morning and keep him awake. He and Randy have been hanging out this morning mostly watching a movie.
I am not sure how long the EEG will take, but he has another neurology appointment at 12:30 today for a full work up. After we are finished there we will be going into the clinic. I'm not sure if they will draw labs or not. Home health was supposed to be out this morning, but since we will not be here I cancelled that.
So far Devin has been off of all meds since Friday and has not had any other 'episodes'. He acts as though he is feeling better and is eating a little. His energy level is still low, but he has been in a good mood for the most part.
Thanks for stopping by to check on Devin. I'll update when we hear something about these tests today.
Monday, July 26, 2004
Thanks for stopping by to check on Devin. Things have settled down a little bit around here. Devin spent most of the day in clinic with two oncologists checking him out and trying to get him set up with a neurologist. After being there for several hours without getting in touch with the neurologist he was sent home to 'be totally supervised'.
The neurological tests done by the oncologists were good they said. They were good in the ER on Friday too. Oncology wants an EKG done and a full neurological work-up..soon. If the neuro stuff is negative they will proceed to an MRI of the brain, even though the CT of the brain was negative.
The oncologists reminded me that the initial CT of his brain back in October was clear; while the MRI (actually an MRA) found the clots. That is not news I wanted to be reminded of, but we are keeping a positive outlook and just hoping for the best.
They did not take Devin's counts again today. He is neutropenic and VERY bruised up from the falling. His port site looks awful (bruised all over) and they didn't want to aggravate it. They know his counts are bad, possibly worse due to his tiredness, etc.
I was supposed to hear from oncology tonight regarding his appointments, but so far nothing. Hopefully they will have something set up soon. I don't like waiting and it makes me especially nervous when they say 'don't leave him alone'. I am scared of what could happen. This stuff is just so unfair.
Saturday was uneventful for Devin. Luckily. To spice things up around here I started having chest pains and Randy landed up taking me to the ER. They told me I was too young for a heart attack, doped me up and sent me home. I'm glad they thought that as I really didn't have time for any extra ER visits or hospital stays.
Sunday Devin was feeling a bit down so we drove up Millcreek Canyon for a 'hike' and picnic. Devin's energy level is non-existent so we had a very small hike, played in the creek and ate our sandwiches. We all enjoyed getting out of the house. It was a beautiful day up there. We hadn't been up there since last year for scout camp. I know Devin is missing being in scouts. If we can get his counts up I am going to get him back involved. He loved it when he was a tiger cub.
Grandma came back Sunday night. The kids were so glad to see her again. They put on a water show out in the pool for her. They were swimming and doing all kinds of tricks. She said it looked like Devin's hair had grown while she was away. I think so, it seems to be thickening up the past week or so.
Sorry the updates have been further apart. I am a little depressed over the recent turn in events and just am not up to it. I am having trouble taking it 'one day at a time' right now. I am ready for Devin to get well and be a normal kid with a good immune system. This cancer is no fun.
Please sign Dev's guestbook and let him know you stopped by. It is loading up very fast, so PLEASE take a moment and sign in. Thanks.
Friday, July 23, 2004
It has been a crappy day to say the least around here. Devin woke up about 10am after going to bed around midnight (didn't get up until 2pm yesterday).
Anyway, said he was cold and asked to take a warm bath. I ran him bathwater, he got in and I went into the kitchen to do some cleaning. After a while I didn't hear any noise in the bathroom and went and opened the door to find him on the floor. He was staring up at the ceiling looking very dazed. His body was mixed around like he had fallen AGAIN. I talked to him for a while and he was not making much sense. Finally I got him up and onto my bed. I started asking him simple questions that he could not answer. I called the on-call.
On-call said to bring him right in. I gave them his counts AGAIN and they asked if he had fever. No fever, but definetly not right. I called Kevin and Holly, got Kara packed up and took her across the street. Lucky for Kara they are both off of work today. We took Devin straight up to the ER.
The only perk I've seen of being a chemo kid is the fact you DO NOT wait for a room in the ER. He was taken right back and made comfortable. A doctor soon came in and gave him a full neurological exam. She had a second dr. come in and they talked with hem-onc. A head CT with contrast was ordered, as well as a full metabolic panel and another CBC (just had one on Wednesday).
By the time he went to CT he was acting more like himself. He had been accessed (only the 3rd time with the new port) and was ready to roll. He looked so calm lying up there in the CT machine. He smiled the entire time and just made me want to cry. I just don't understand how these kids can endure so much and keep on smiling. I guess it is just becoming 'part of the routine'.
Good news: the CT was clear. No clots, no masses, nothing. We couldn't have asked for better news. The wait for that seemed to take hours, but we were certainly glad to get a clean report. Bad news: Dev is officially neutropenic AGAIN. This means his counts have dropped yet again since Wednesday. No one seems to know why, but he was taken off of all chemo until at least Monday to see if they can go up.
Bad news: Devin is having seizures for some unknown reason. He will be going into clinic this next week for a complete work up. Today is actually a holiday in Utah, so all clinics were closed. We are to watch him very carefully until he gets up for this study. He is not to be left alone and of course now that he's neutropenic, if he gets a fever he will be admitted.
We are home now. He is acting good (and normal). It was a long day at the ER, so hopefully he will be sleepy pretty soon. Thanks to Harrison and Sam for tiring out Kara while we were away. She is trying hard to keep her eyes open now.
Thanks for checking in. Please sign the guestbook and let Devin know you stopped.
Friday, July 23, 2004
I'm hoping today is LOTS better than yesterday. Devin FINALLY got out of bed about 2pm yesterday. I would go in and check on him and he would rouse a little, say he didn't feel good and go immediately back to sleep.
Finally at 2pm he jolted out of bed, ate a little cereal and went outside to swim. Within an hour he was exhausted and freezing; even had chill bumps on him. As he was coming up the deck his legs gave out on him and he fell flat on his face. I don't know if he passed out or what, but he didn't feel it coming at all. I got him up and ran him a warm shower. That seemed to make him feel better.
We watched some Spongebob and began our count down to pick up dad from the airport. Devin said he wanted to go inside the airport, but he got up to get some drawing paper and fell AGAIN. No warning...just fell. By this time he was really getting discouraged. He started crying and was just so upset. He was just NOT himself at all yesterday.
He fell AGAIN as we were leaving to go to the airport. I called Russ and he advised me to call on-call. I am really out of practice at these 'emergency' situations. I had forgot what the procedure was. I called on-call and got a very nice, new oncologist that I had never talked with. She called Chi (another onc) since she wasn't personally familiar with Dev. Anyway, its another one of those watch and wait scenarios that seem to be all too common in the life of a cancer kiddo.
They told me to go ahead with the methotrexate, but to hold the 6MP. Most likely he is getting sick, so no tylenol. I'm supposed to call today after Dev wakes up. He was back asleep by midnight yesterday and still snoozing today. Something is just not right. He is normally not weepy at all. He talked to grandma on the phone last night and was just crying and begging her to 'come home'. I guess he is ready for his golden to be back doting on him.
We'll hope today is a better day. Usually the methotrexate day is pretty crappy, as it makes him feel nauseaus, but we'll just hope for the best. He needs a good day about now. Randy is gone to work, but said if Devin feels up to something he will take off and 'do something'. I would like to go fishing, but we'll see.
Thanks for stopping by to check on Mr. Devin. He appreciates your kind messages so please drop him a line. The guestbook has been split, so it is loading VERY fast. Have a great weekend.
Thursday, July 22, 2004
First off..thanks to Dillion's mom for telling me how to split the guestbook. It is now MUCH easier to load...so go ahead and leave a message!!
I'm still waiting to hear from the hospital about Devin's chemo. The nurse was going to call me back after she heard from the main oncologist, but so far nothing. It seems we are always waiting for something.
Needless to say the mood is not so great around here. Devin's little party should have been fun, but when I picked him up he looked like he was going to cry. It was super-hot and everything was outside. I think it just wore him out and was upsetting to him that he couldn't keep up. This is hard to see. I was sure hoping he would just have the time of his life. He said several of the kids wouldn't talk to him. I don't know if they are surprised he is alive, or scared they will catch cancer or what. He was down anyway.
Me, I am down as well. I am so tired of this cancer crap that I could scream. I honestly thought the counts would have gone up. I mean they were so surprised that they were low on the 7th, now for them to drop even further. Shock...I think is the best word. I was on my way to pick up Dev from the party when I got the call. The pharmacist started telling me numbers and when I heard they weren't good I just had to pull over. I got this big lump in my chest and just felt sick. This cancer stuff is just so overwhelming.
I told Dev his counts had gone down more. He really should be wearing his mask when he's out in crowds AGAIN. Also, this knocks him out of the 'good count count-down' he was hoping to do. He needs 2 consecutive months of good counts (meaning somewhere in normal range) before they will release him to go back to school. Anyway..no deal.
So..just waiting for the clinic to call. Its sunny and warm outside right now. Dev is sleeping in. We'll just see what the day brings. Thanks for stopping by. Please sign the guestbook. Its loading up VERY fast....so it will just take you a minute.
Wednesday, July 21, 2004
Diane came from HH this morning to get Devin's labs. He was in a good mood and ready to get it done so he could go to the birthday party. He was so excited to finally be getting out of the house and being a part of something.
On my way to pick up Devin home health called. Devin's labs have gone down AGAIN. I was basically shocked. I have thought he looked pale for the past couple of days, but this confirms it. I'm not crazy after all. All of his counts are below normal, so we are on hold, yet again for school. It is a big downer to say the least.
It was super HOT here today. The party was outside and when I got back to pick Devin up he was worn out. I had talked to Mr. D. earlier this morning, so we ran by the school to meet the teachers. We met the new 3rd grade one. The first grade teacher was gone. At least we got something done.
Mr. D. was telling us that his son just bought a Cold Stone Creamery franchise over in Murray. Devin and Kara thought that was pretty neat. Mr. D. invited us for ice cream some time. He is a really nice guy.
I couldn't believe that the hospital had called before I got a chance to call them. I'm still waiting to hear from the clinic nurse. His ANC is border-line for holding chemo right now. We shall see.
After we left the school we stopped by, you guessed it, Cold Stone and got some ice cream. We then came home and jumped in the pool. We hadn't been in it since probably Saturday because of all the thunder and lightening. It was nice to be out in the backyard. Its nice to do something 'normal'.
Thanks for stopping by to check on Devin. He appreciates your messages.
Tuesday, July 20, 2004
I just talked to my mom and Nanny is sick. She is afraid she will land up dehydrated and in the hospital, so she cancelled her return trip for tomorrow. I haven't told the kids yet. They will be disappointed, but they will get over it. Hopefully Nanny will be feeling lots better tomorrow and Grandma will be back out here on Sunday. We'll see.
Randy called after Kara fell asleep. He and Devin talked a long time about school. Devin wants to go to school so bad. He doesn't quite understand WHY he can't go. I really thought he understood all about the counts, then I think how crazy that sounds....after all he is just a kid. He was seven when he was diagnosed and turned eight in March. I think I may be losing my mind. Why in the world would any of this cancer stuff make sense to him?? It makes no sense to me.
Anyway, Devin is disappointed that 'Kara gets to go to school'. Hopefully his counts will be good tomorrow and he can begin his 2 month count down. That would put him going to school at the beginning of October. Watch and wait.
I talked to Make A Wish yesterday. I gave her some dates in September when Kara is out of school. Devin wants to go to Disneyworld and Cape Canaveral. His real wish is to fly an airplane, and thanks to our friends at MAW he will get to do that on September 17th in Wendover, Nevada. He was picked to go up with a pilot and be the co-pilot of either a T-33 or T-34. Pretty cool because that is his true wish; to be a pilot. Also, it is the anniversary of the day he was diagnosed. Its hard to believe he has been doing chemo that long.
Thanks for stopping by to check on Devin. I will know tomorrow afternoon how counts look. I'll post then. His next clinic chemo is August 4th, so two weeks until that.
Tuesday, July 20, 2004
Everything is going good here. Devin looks pale to me, but seems to be doing ok. Tomorrow HH will be out and take a CBC to see where he stands. I'm keeping my fingers crossed that his counts have come up from 2 weeks ago.
Its been raining quite a bit here. We got woke up last night by all of the thunder. We're not used to that around here; seems more like Oklahoma weather!! Lots of thunder and lightening for the past week or so. Its raining right now again.
This morning we tried to meet the teachers over at Jordan Ridge. We were unsuccessful, but we did get to see Mrs. Burgon, Devin's teacher from last year. She was glad to see Devin out and about. This afternoon we met some teachers over at the other school. They were both really nice.
We are still pretty up in the air about school. It is going to be hard to get Dev up to take Kara every day if he's not feeling well in the mornings. J.R. is an accelerated program, but it is a little bit of a drive. I just don't know what to do.
We walked over tonight and saw Russ. He had his tonsils taken out yesterday and is pretty sore. He was glad to see Devin out riding his bike. He was glad to see that Devin's port area is looking less swollen. Hopefully the blood draw tomorrow will be pretty painless.
Diane will come do the CBC at 10am. Devin has Chase's birthday party at 11:30, then we pick up Grandma at 1:30. If its not too stormy I think we will go over to the candy factory after we pick her up.
Randy comes home either Thursday or Friday night. It depends on how much work he can get done. He left yesterday afternoon for New Mexico. This is only the second trip he has taken since Dev was diagnosed.
Well, not much else going on. Just trying to get the school things figured out. We know Dev can't start for a while, but Kara starts on Monday.....decisions, decisions.
Thanks for stopping by to check on Dev. Please leave him a message.
Sunday, July 18, 2004
Not too exciting of a day around here. Raining off and on and lightening all around us. Not like summer in Utah at all. The lightening is scary. We don't take any chances in it at all. A teenager got struck and killed last night here in SLC. Sad.
Devin has been pretty grouchy all day. Mostly just playing his gameboy and trying to stay away from his sister. He is mad because he can't go swimming, but its just not safe with all the lightening. Hopefully tomorrow the storms will go away and they can be outside more.
Randy grilled tonight. Devin didn't eat anything. He seems so picky with what he will eat and when he will eat it. There is no second-guessing him. I guess he eats when he is hungry or when I harass him enough. He usually decided he's hungry when I'm ready for bed. Oh well.
Tomorrow we are going to see if we can meet the kids' teachers for next year. Devin won't be eligible to start until early October, but Kara is due to start next Monday!! It has been a short summer for her. We are going to have to make the most of this week. She has been talking about going to the candy factory so maybe we can do that after we get Grandma on Wednesday.
Speaking of Wednesday, Devin has a birthday party then. He is so excited. This will be the first time he has seen any kids from his class in a LONG time. He is a little nervous and a whole lot excited. Wednesday will be a big day. Blood work, birthday party, picking up Grandma from the airport and possibly going to the candy factory.
Thanks for stopping by to check on Devin. He is feeling good. This maintenance stuff is so nice compared to what he has done over the past ten months. We feel like we are on vacation....just hope we can stay on this schedule and eventually have him declared CANCER FREE for good!!
Sunday, July 18, 2004
Happy Sunday!!
The kids are still sleeping in this morning. We had a BIG rainstorm last night and I think everyone slept really well. We sure needed the rain. Now maybe our grass will green up some.
Friday we spent most of our day cleaning out things for the garage sale. In the late afternoon we finally took a break and went swimming. We hadn't been outside 20 minutes when it started lightening all around us. Needless to say we came inside to do some more cleaning.
Yesterday was a perfect day for the garage sale. It was overcast and cool all morning. We did really well and got rid of about 80% of the stuff we had out to sell. By 12:30 the sun was out and it was getting steamy so we loaded it up to donate. The kids didn't want to participate with the garage sale at all. As a matter of a fact they were all acted scared to be out there; except for Devin, he really slept in yesterday. He has been sleeping a lot more lately.
Anyway, the portion we made was $140. We gave the kids each $20 that they can spend now and I will put the rest of the money in the bank for them. I don't think they will spend it as they both have yet to spend their birthday money (from March). They are little savers......they just talk mom or dad into buying something they 'need'. Smart kids.
Last night we went over to a cook-out at some friends that we hadn't seen since this time last year. The kids had a great time playing with Jonathon and Jeremy. They tried to swim for a while, but the water was too cold and it was lightening all around again.
I realized as Randy and I were talking to Patty and Dave that we need to get 'out' more. Neither of us could come up with anything to talk about except childhood cancer. That is really not good 'dinner' conversation. I'm going to have to get something else to talk about. I'm sorry guys. I will try better to have something not so dreary to talk about when we see you in a couple of weeks.
Anyway, the good news is Devin is still feeling and looking good. It even seemed like he tolerated the methotrexate a little better this week. Thats good. He's got MANY more doses of it to go before he's done with it for good.
Thanks for stopping by to check on Devin. He appreciates your kind messages, so please drop him a line. Have a great day.
Thursday, July 15, 2004
We spent most of the day cleaning out toys downstairs. The kids re-discovered a lot of things that they 'needed' to keep. We haven't made much progress in getting rid of things, but maybe we are getting organized. I'd like to think we got something accomplished anyway.
I talked to my mom for just a minute this afternoon. She said the funeral was very nice and there were lots of people there. That is good. I'm glad there was a good turn-out. He was a really nice guy with a nice family and lots of friends. I still wish I could have gone, but there was just no way at this time.
Momma also said Nanny seemed a little better today. She is trying to figure out just what to do with her. There is the option of a nursing home, full-time caregiver or trying the geriatric program through the hospital for a couple of weeks.
I don't think Nanny really wants any of those options. I don't blame her. I try to put myself in her shoes and its really just not much of a life. She has lost her vision and can't do the things like sewing and reading that she did for enjoyment. Like Nanny says, the golden years aren't all golden.
Devin talked to Grey (in Alaska) and I talked to his mom this evening. Devin was excited to finally get to talk to him. They will be coming back to Utah in December to spend Christmas so hopefully we can get together with them then. Dori says Alaska is just a great place to live. She was telling me about all of the wildlife they have seen up close, as well as all of the great fishing. It sounds good to me. I am envious to say the least.
We spent the late afternoon and early evening in the pool. Somehow Kara got a little sunburned on her face. I don't know what that is about as I covered her in sunscreen.
I just gave Devin his methotrexate so I don't know what tomorrow will be like....watch and wait. This drug usually makes him a little nauseaus and not feel up to par. At least it is only once a week though...we can handle once a week.
Thanks for stopping by to check on Devin. We appreciate your messages so please leave a message.
Thursday, July 15, 2004
Yesterday turned into not such a good day for swimming. The sky was dark a lot of the day and it was lightening and thundering when the kids decided they were ready to swim. Instead of swimming we went with Nicholas to see the movie 'Two Brothers'. The kids enjoyed the movie. They all ate lots of candy and popcorn. We hadn't been to the movies in a long time so it was a nice change.
Looks like it will be sunny today. The kids are wanting to surprise their dad and take him out to lunch today. They'll have to get dressed first. They have been in a very lazy mood today. They are supposed to be cleaning their rooms, but we haven't made a lot of progress. They keep finding things that were 'lost' and playing with them. Oh well, at least they are keeping themselves entertained.
I haven't given Devin his methotrexate yet today. I think I will wait until bedtime and hopefully he will feel good today. I hate methotrexate day it always makes him feel nauseaus and draggy. I guess we should be glad its just one day a week. It could always be worse.
Devin got an invitation in the mail yesterday to a friend's miniature golf party next Wednesday. He is really excited. He hasn't got to see Chase for a long time, plus he LOVES golf. We went and played indoor, glow-in-the-dark miniature golf one day last week and the kids just loved it.
Devin also got a call while we were out from his friend, Grey, who moved to Alaska shortly after Devin got diagnosed. He is anxious to get him called back, but there is quite a time difference...I think about four hours. We don't want to call him too early or too late. Hopefully Dev will get ahold of him today. He has been wanting to talk to him for a long time.
All in all we are hoping for an uneventful day. Kara's mouth is looking better (finally), so hopefully that will resolve itself and we won't have to make another trip to the doctor. This is the first day it has looked clear since we started the meds.
Thanks for stopping by to check on Dev. He loves reading your messages so please drop him a line. Have a great day!!!!
Wednesday, July 14, 2004
Good morning from an already hot Salt Lake City, Utah.
The kids are sleeping in this morning so I thought I would attempt a quick update.
Grandma Gwen finally made it to Oklahoma early yesterday evening. She was exhausted, but ready to be done with traveling. She said Nanny is in BAD shape and not doing well home alone. Sounds like a nursing home or full-time care-giver are in Nanny's future. She is not safe to be home alone anymore.
Today Grandma was going to spend the day with the Reesers. They have been like a second family to us for many, many years. I wish I could have gone back for the funeral, but I really don't want my kids to go and everyone I know and trust will be going to the funeral.
The kids are already missing their Grandma. The past few nights Kara has had a 'slumber party' with Grandma downstairs, so last night she missed that. Devin is missing Grandma calling him 'little ole' and keeps asking me when she'll be back. I told him he would just have to share her for a while, then hopefully she'll come back soon to help take care of him.
The kids are planning on swimming and cleaning their rooms today. Hopefully I can get them motivated to get rid of some things. Our neighbor is having a garage sale this weekend so I told them they could keep whatever money they made.
Thanks for stopping by to check on Mr. Devin. Everything is going good..AGAIN...and hopefully he will stay well and keep feeling better and getting stronger every day.
Tuesday, July 13, 2004
Finally an update.
Things are going ok for Devin. He is feeling good for the most part and working hard at keeping busy.
We've had some MAJOR computer issues, as well as phone problems so thats the reason for the lack in updates. We've missed being able to check on all our friends...hopefully we've got everything straightened out, AGAIN.
We went to our neighbor's 4th birthday party on Saturday. The kids had a great time. Sam was turning the big four so she celebrated by bowling, pizza and games at Fat Cats. It was fun and the pizza there is so good.
Saturday night we drove to Logan to go to a reception for some friends. Devin enjoyed listening to the band play and seeing Bryan's new guitar. They were especially impressed to see how big Josilyn was. I can't believe she is one already.
Sunday and Monday we spent swimming. The kids just can't get enough of the pool. The water is still pretty cold, but its supposed to be HOT all week so it should be getting warmer very soon.
This morning we took Grandma to the airport to go back to Oklahoma. She was going home to help get Nanny situated and go to Leonard's funeral. Not too much of a fun trip, but I'm sure it will be good to see everyone.
Thanks for stopping by to check on Dev. He is looking more like himself everyday. His hair seems to thicken up everyday, although it is coming in straight....so far.
Please sign the guestbook..
Friday, July 9, 2004
I guess I bragged too soon. Devin slept in until early afternoon. I finally got him up, but he feels awful. He is sniffling and coughing. Not up to par today.
I asked him if he wanted to go get some buffalo chicken, but he said he didn't feel like it. Instead he said he could eat some soup from Rileys so off we went to pick some up. He ate a couple of bites and called it good. Even on these steroids he isn't eating. Thats a record. He has gone back to bed so hopefully he will fall asleep and feel better when he gets up. He looks ok, just not feeling so good. Probably (hopefully) it is the methotrexate. I gave it to him late last night so he could have a good day yesterday.....so he pays for it today instead. I hate cancer. I hate that it takes my innocent little boy and makes him feel like crap. Its not fair and this is the best it has been in months.....
Enough of this. This too shall pass. Its just very frustrating. I thought we were past this hour by hour business, but evidently we're not. I wonder if every month will be like this after vincristine and steroids. Who knows. Watch and wait.
Thanks for stopping by. I know this is nothing compared to what he has gone through and what so many others are going through now, but right now we're tired of cancer around here and would enjoy being 'normal'.
Friday, July 9, 2004
I can't sleep. Too much on my mind. Its been another good day. No complaints....just in awe of my kids. Again.
Just got Kara to bed past midnight. I am tired, she's tired, but we were just having too much fun to go to sleep. Teasing and giggling around about what will happen when she goes to first grade. She is so funny. She started tickling me, then I started tickling her. Finally she asked for a time out and told me we needed to get to sleep...but before she drifted off she told me that she loved me and it made her happy to hear me laugh. She said, "mom, you were laughing for real...a real laugh...I love it when you do that.". I guess it has been a long time. I've missed that.
Devin is doing well. I finally feel like I can relax...about that anyway. His counts have come down so of course there is the fear that they could come down lower and we could land up back inpatient.....but it feels less likely. He looks good. Surely that is worth something. He acts more like himself. He's amazing. He had that vincristine yesterday and hasn't fallen once today. No complaining, no falling...and has even eaten a few bites today. What more could you ask for?????
We got up this morning and decided to go feed the ducks. There's a good place a few miles north of here so we loaded up the bread and took off. Grandma and the kids had a blast. It was so much fun to watch them feeding and talking to the birds. Lots of ducks, geese, pigeons and the dreaded sea gulls. The kids are already planning their next trip to feed the birds. It was fun.
Today Devin told me that it is still my birthday and I can keep having my birthday until someone else in the family has a birthday. This means I will get to keep celebrating for a LONG time. He is so good to me. He also asked me what kind of car I want when I'm a grown-up. He is so funny. This is after he told me of all the vehicles; including cars, trucks, planes and rv's that he will have someday. He is funny. He has BIG plans for the future.
Mr. D. has been out of town but hopefully will be back soon to get started visiting with Devin again. Devin needs to get some routines going on. I'm afraid he is going to be lonesome when his sister starts to school in a few weeks and he is home alone with mom and grandma.
I need to go and visit with the principal about keeping Devin on the home and hospital school for a while longer. His counts need to be good for at least a couple of months before he's eligible to attend school. He is up to doing the work, just pretty risky having him around so many kids with his counts being so questionable. We'll see what happens.
Thats about all for now. Dev looks good and so far is feeling good. I waited until this evening to give him his methotrexate so hopefully he will sleep through the worst of it. It makes him feel pretty sick, so I thought this was worth a shot...so far, so good.
Thanks for stopping by to check on Devin. We all enjoy reading the nice messages so please feel free to sign his guestbook.
Wednesday, July 7, 2004
We've had a good day here today. We had to kick Devin out of bed this morning in order to get out of here in time for the clinic. We were out of tegaderm, so just put a regular covaderm over the emla......doesn't work.
Anyway, ran into road construction (welcome to Utah) on the way up to the clinic, but we weren't the only ones running a little late. We spent about 2 1/2 hours up there and got re-emla'ed, then accessed that brand new port. They used a bigger needle this time because he is still pretty swollen. Its only been 12 days since surgery so he is still bruised up.
Anyway, got the CBC and vincristine and were on our way home. Finally called and got the counts about 4pm. His counts have dipped quite a bit, but still qualifies for 100% of his dosages for chemo. His WBC is down below normal range, so still playing the waiting game as far as school is concerned. We are set up to have home health come out in two weeks (if we don't land up there before) to do counts again. Devin is excited that Russ will be coming to see him again soon.
Its been a good birthday for me. I've had a lot of phone calls and friends stopping by to visit. Grandma and Kara surprised me with a really pretty cake when we got home from the clinic. We'll cut it after dinnner. The kids made a really neat Happy Birthday Mom sign that is hanging in the living room. Its good to be able to be home and have everyone relatively healthy around here. It seems that Devin has spent everyone else's birthday stuck in the hospital so its good to be home.
Thanks for the well wishes for Devin. He enjoys reading his messages, when he's not out swimming. Please drop him a line and let him know you stopped by. Thanks.
Tuesday, July 6, 2004
Things are going good around here. Devin has been feeling pretty good and just enjoying being a normal kid. We had some friends over Saturday night for a cook-out and all the kids enjoyed swimming together. On the 4th the kids swam some more and we had a cook out at Randy's parent's house.
Devin isn't eating much, but seems to have plenty of energy when he's awake. He has been wiped out from the Las Vegas trip so has been sleeping more than he did before.
Tomorrow will be vincristine day. He has a clinic appointment at 11:00 am. It will be the first time he has had the port accessed so we are all a little nervous about it. I need to see if I can find his emla cream so we are ready to go in the morning.
His chest is still pretty bruised up, but most of the swelling is gone and you can kindof see the port now. The steri-strips are still on one side of his chest and he enjoys showing his scars off to anyone who is interested.
Thanks for stopping by to check on Devin. I'll update tomorrow after we get in from the clinic. Hopefully it will be a short and sweet visit.
Saturday, July 3, 2004
We're home!!
We had a good time in Las Vegas, but are glad to be home. The kids enjoyed the hotel. We stayed in the Aladdin and it was really nice. They got to see their cousins dance and win numerous awards. The girls are good!! They got so many trophies that they gave Kara and Devin one trophy and one medal to bring home.
The kids played games over at the Excalibar and at Circus Circus. We came home with a bag of 'prizes'. Lots of stuffed toys, pencils and hats. The kids were really proud of their haul of goodies.
One night we ate at the Harley Davidson cafe. Devin didn't eat any of his food, but enjoyed looking at all of the bikes. Of course we were thinking of our little buddy, Boogie, while we were there. He would have loved it!!
There is just so much to see in Las Vegas. It is an amazing place. We went to the M&M place, Coca Cola, New York, MGM, Rainforest.......we went ALOT!! Devin did really well, but tired out pretty quick. He had fun though.
On our way into Utah we saw a convoy of trucks and highway patrols with a firetruck and wreckage from the 9-11 tragedy. It is on its way into Utah for a 4th of July celebration. It was neat to see it.
Today is a relaxing day. The kids slept in and went swimming in our pool this morning. This afternoon dad took them to an indoor pool with the slide. Tonight we are having a cook-out with some friends...with more swimming!!
Thanks for stopping by to check on Devin. He's doing good and happy to be home. Hope you all have a safe and happy 4th of July!!
Saturday, July 3, 2004
We're home!!
We had a good time in Las Vegas, but are glad to be home. The kids enjoyed the hotel. We stayed in the Aladdin and it was really nice. They got to see their cousins dance and win numerous awards. The girls are good!! They got so many trophies that they gave Kara and Devin one trophy and one medal to bring home.
The kids played games over at the Excalibar and at Circus Circus. We came home with a bag of 'prizes'. Lots of stuffed toys, pencils and hats. The kids were really proud of their haul of goodies.
One night we ate at the Harley Davidson cafe. Devin didn't eat any of his food, but enjoyed looking at all of the bikes. Of course we were thinking of our little buddy, Boogie, while we were there. He would have loved it!!
There is just so much to see in Las Vegas. It is an amazing place. We went to the M&M place, Coca Cola, New York, MGM, Rainforest.......we went ALOT!! Devin did really well, but tired out pretty quick. He had fun though.
On our way into Utah we saw a convoy of trucks and highway patrols with a firetruck and wreckage from the 9-11 tragedy. It is on its way into Utah for a 4th of July celebration. It was neat to see it.
Today is a relaxing day. The kids slept in and went swimming in our pool this morning. This afternoon dad took them to an indoor pool with the slide. Tonight we are having a cook-out with some friends...with more swimming!!
Thanks for stopping by to check on Devin. He's doing good and happy to be home. Hope you all have a safe and happy 4th of July!!
Monday, June 28, 2004
Well we didn't leave as planned. Devin had a fever over the night and wasn't feeling up to par. This will be his first trip away from the house so we are all a little nervous to say the least. We are planning on leaving early in the morning.
Dev slept in this morning. He felt better by this afternoon and he had a quick bath then we uncovered his broviac site. It looks really good. His chest is still sore on both sides, but it is looking better. Bruised, but that is to be expected.
We had some big thunderstorms late this afternoon. All of the flowers look pretty beat up. We need it though, so we don't complain. It stopped just in time to go to Randy's company picnic. Luckily they had it in a covered part of a park. The kids had a good time playing, but are worn out tonight.
Thanks for stopping by to check on Devin. If things go well we will leave in the morning for Las Vegas. Please leave Dev a message and let him know you stopped to check on him.
Sunday, June 27, 2004
Devin is feeling much better today. He says his pain is at a zero so that is good. He is still pretty puffy and swollen, but that should be gone soon.
We've decided to take a little trip to Las Vegas. Some of our family is out there now for a dance competition so we thought we would meet up with them and have a mini-family reunion. The kids are excited. Randy will stay home and take care of work and the dogs. Grandma, the kids and I will take off in the morning.
We won't be doing any swimming, but hopefully the kids will find other things to do with their time. It will be fun just to see the cousins. They are all in a big dance competition so it will be neat to watch them perform LIVE. They are really good.
We will probably be home sometime on Thursday so I don't know when the next update will be, but know things are going well and Devin is on the mend. Thanks for stopping by. Please drop Devin a line and let him know you were here. Thanks.
Saturday, June 26, 2004
A better day here today. I have been keeping Devin on pain pills today. He is feeling lots better, but still quite swollen. Moving a lot easier and quicker though. He is definetly sore, but lots better than yesterday.
He is counting down the days until he can get in the pool. Randy got our pool set up last night. The kids had a blast in it last year so we know they'll love it again this year. We didn't set it up until we knew that Devin would get to use it this season. He is so excited.
This morning his friend Nicholas brought him balloons, a car set and Krispy Kreme donuts as a congratulations for getting rid of that broviac. They are talking about swimming together sometime soon. Hopefully next weekend. We are hoping it will get hot and get the pool water warmed up by then.
All in all it is a good day. Randy left with some friends to Wendover to gamble. Kara just got back from Kierstin's swimming party with a goodie bag for herself and Dev. He was excited. He wants her to have another swimming party so he can go. Next time.
Thanks for stopping by to check on Devin. Hopefully tomorrow he will feel even better than today. Please sign the guestbook and let him know you stopped. Thanks.
Friday, June 25, 2004
Just a quick update: The surgery went well. It took a little longer than they were expecting, but everything is done and looks ok.
We had to be there at 6:30am and he was taken back into surgery at 8:30am. At 11:10am the surgeon came out and talked to us. About 20 minutes later we were allowed to see Devin. He was in some extreme pain and moaning. Hard to see.
They had started an IV on him while he was sedated so the nurse was able to get him some fentanyl in the IV. Before long he had settled down and went back to sleep. He slept pretty good for a few hours, then turned in bed and the pain woke him up. He is sore on both sides of his chest, with bandages on both sides.
He got his wish to keep the broviac. We brought the part that hung outside of his body home. He didn't really pay much attention as he is feeling absolutely awful. I just got him to eat a little dry cereal so he could have some pain pills. Poor kid. Its been a while since we've seen him feel this bad.
Hopefully he will begin to feel better soon. He is watching Spongebob right now and just taking it VERY easy. Thanks for all of the well wishes for Mr. Devin. He enjoys the messages so please drop him a line.
Thursday, June 24, 2004
Today was a good day. Devin is looking and feeling good. His hair is a little longer so that it is beginning to lay down. He is still wearing his new hat 24/7. We have to take it off of him to go to sleep.
We had Randy's parents and Bud and Anita over for dinner tonight. The kids enjoyed having company. They played out in the yard until Devin couldn't go much more. He had fun running around.
We got 'the call' from the surgery unit late this afternoon. Devin is to be there at 6:30 am, so he will be one of the first kids to go into surgery. This is good because he absolutely hates being NPO. This way he can still eat or drink (if he wants) up until midnight.
He is so excited about getting this broviac out. He is a little nervous about the port, but everyone who has one says it is just great.....and he will soon be able to go swimming. What a deal!!!
Thanks for stopping by to check on Devin. Tomorrow will be a big day. He is excited for it all to happen. Please drop him a line and let him know you were here. Thanks.
Thursday, June 24, 2004
Devin continues to do well. We did his FINAL dressing change Tuesday night. What a nice feeling it was to know this was the last time we would have to do this. It has never been a big chore, mainly an aggravation for him. Devin said he is going to write a note on the bandage for them to save it. He wants to bring it home with him. We'll see.
He had his first guitar lesson in weeks yesterday. He really enjoyed it. His teacher was really glad to see him back. Devin told him that his cancer isn't showing up and he is getting lots better. He is so happy to tell anyone and everyone that he is getting that broviac out. Its exciting news.
Last night was Grandpa's birthday. We went over to their house for a cookout and birthday cake. Devin and Kara had great fun playing ping pong. He is aggressive!! He kept hitting the ball so hard I was afraid he would bust it. I think he was getting it confused with baseball. He's a good hitter.
Not much other news except Devin continues to feel great. His hair is getting long enough so it is not sticking straight up in the air. He looks more like Devin every day.....the Devin BEFORE cancer. We are talking about the possibility of going back to school. Lots of things to think about.
We don't know what time surgery will be tomorrow. Hopefully he will get an early slot so he won't have to be NPO too long. We'll see. He's ready.
Thanks for stopping by to check on Mr. Devin. He really enjoys reading all of your great messages, so please drop him a line.
Tuesday, June 22, 2004
The party continues.....
Dev is feeling pretty good. I think a little overwhelmed about all of a sudden things seem to be moving so fast. If things go as planned he will get his broviac out on Friday and get a port placed. This is a big deal!!!
The central line has been his link to life for the past TEN MONTHS. He has received many IVs; both for medicinal purposes, as well as nutritional. The blood transfusions, chemo....the majority of it has passed through that line. Its amazing.
I told him last night he had the line longer than he was in my stomach!! That made quite the impression on him.......it has been his true link to life. We are so thankful for the line and all the pain it has saved Devin from enduring. He is just so excited to think about getting it out. A little nervous, but so am I. Its a big deal.
He woke up this morning early to go golfing, but felt sick so didn't go. Instead he stayed home and went for a walk with Aunt Anita and me. He rode his bike a little while, but was afraid he wouldn't get to talk to Anita, so walked most of the way. After we came home he let Anita borrow the dot paints and they made a sign for Gpa's upcoming birthday. Then he and Kara made a stepping stone for Anita and Bud to take with them when they leave......so now they HAVE to stay until at least Thursday.
He is wiped out this afternoon. We went and got snowcones and he thought a lot about what his summer plans are......one guess: SWIMMING!! Lots and lots of swimming. Randy is going to get our pool up and let the water start warming up. It won't be long after Devin gets his line out that he can just SWIM, SWIM, SWIM all he wants. That may take a while. Its all he can talk about!!
He has really appreciated all of the nice messages that people have left for him. It makes him feel so good that so many people across the globe have taken the time out to say....WAY TO GO DEVIN!!!!!!!!! Thanks
**just posted some newer pictures...for some reason cannot get them sized down***
Tuesday, June 22, 2004
The party continues.....
Dev is feeling pretty good. I think a little overwhelmed about all of a sudden things seem to be moving so fast. If things go as planned he will get his broviac out on Friday and get a port placed. This is a big deal!!!
The central line has been his link to life for the past TEN MONTHS. He has received many IVs; both for medicinal purposes, as well as nutritional. The blood transfusions, chemo....the majority of it has passed through that line. Its amazing.
I told him last night he had the line longer than he was in my stomach!! That made quite the impression on him.......it has been his true link to life. We are so thankful for the line and all the pain it has saved Devin from enduring. He is just so excited to think about getting it out. A little nervous, but so am I. Its a big deal.
He woke up this morning early to go golfing, but felt sick so didn't go. Instead he stayed home and went for a walk with Aunt Anita and me. He rode his bike a little while, but was afraid he wouldn't get to talk to Anita, so walked most of the way. After we came home he let Anita borrow the dot paints and they made a sign for Gpa's upcoming birthday. Then he and Kara made a stepping stone for Anita and Bud to take with them when they leave......so now they HAVE to stay until at least Thursday.
He is wiped out this afternoon. We went and got snowcones and he thought a lot about what his summer plans are......one guess: SWIMMING!! Lots and lots of swimming. Randy is going to get our pool up and let the water start warming up. It won't be long after Devin gets his line out that he can just SWIM, SWIM, SWIM all he wants. That may take a while. Its all he can talk about!!
He has really appreciated all of the nice messages that people have left for him. It makes him feel so good that so many people across the globe have taken the time out to say....WAY TO GO DEVIN!!!!!!!!! Thanks
Monday, June 21, 2004
THE RESULTS WERE GREAT!!!! He remains cancer-free!! His scans look identical to the scans on 3/11, so he will continue with this maintenance.
The tumor is still in his chest, but no signs of cancer...or at least that could be detected with the gallium. What a relief!!
Devin is so excited. He asked the doctor about getting his broviac out.......we have an appointment for Friday. The surgeon will take the broviac out and place a port on the other side. He still has 13 more doses of vincristine to go and they don't want to ruin his veins.
We are so happy. We just got home to a 'CONGRATULATIONS DEVIN' sign as we drove in the driveway. Thanks Grandma and Kara!!!
Off to celebrate...........
Sunday, June 20, 2004
We had a good day and Randy had a good Fathers Day. The kids wanted to take him to IHOP for breakfast, but we got a VERY LATE start, so it was more like a brunch. Devin ate and ate and ate. He just loved the pancakes. I had to order him more.
Randy really liked his stepping stones and he put them out in the garden with the rest. Kara is still picking the blueberries and peas daily. Today she found strawberries too. She loves gardening....which means watching daddy weed, while she searches for something in the garden to eat.
Randy's dad liked his rosebush. We got him the new Jackson & Perkins bush for this year. It is called Wildfire. Thats also the name of the cool rollercoaster Devin rode shortly before he got diagnosed. Dev helped to pick it out. Hopefully it will do well in grandpa's garden.
Bud and Anita will be by in the morning. They are driving in from Seattle and will stop by before Devin goes in for his gallium scan. The kids are SO excited to see them. Anita was here in February, but we haven't seen Bud in a long time. The kids just love Anita and Bud so we are all excited for morning to get here.
Tomorrow is another big scan day. We have been promised we will get all of the results tomorrow, so I am keeping my fingers crossed that we are not let down again. I am just hoping and praying for nothing but clear scans for Devin. He is just so ready to get on with his life.
It seems that everything in our life is on hold waiting for the results of these scans. School, grandma returning to her life in Oklahoma, vacations, etc.. Its hard never knowing what the next day will bring.......but the reality is everyone's life is like this...there are no guarantees in this life.
After your child has been diagnosed with cancer or some life threatening illness you tend to view the world a little differently. Things will never be the same as before Devin's diagnosis. Its not altogether a bad thing. We've learned that so many things in life are insignificant compared to the well-being of your child. The point is until we find out these scans are clear nothing else really matters. We are going through the motions and just hoping for the best.
Thanks for stopping by to check on Devin. He really enjoys reading your messages, so please sign his guestbook and let him know you were here.
Sunday, June 20, 2004
Happy Fathers Day.
Devin's cough seems better. He's been taking cough and cold meds all day on Saturday.
1AM He is getting his dressing changed and watching TV. Hopefully he will go to bed sooner rather than later.
We came home tonight to find our patio table was busted everywhere. Evidently we had a micro burst at our house and it picked up our table and umbrella. The table top is in a few million pieces and the umbrella is up in the tree. What a mess.
Thanks for checking on Devin.
Saturday, June 19, 2004
No news.....
We got a phone call just as we were leaving for the hospital. It was the clinic telling us NOT to come to the clinic for results.
Scans went ok. Devin absolutely hated the contrast this time. It was the worst he's dealt with it. After all the chemo, drugs, shots, etc.; its the contrast for the CT that gets him mad.
After he got the CT scans and bone scans we took a trip down to the clinic. We were surprised to see the door was still open so we went in. We were met by a VERY RUDE 'lady'...who said WE WERE TOLD NOT TO COME IN THERE TODAY. I told her that I knew the scans were in the system...if someone could please interpret them for us. Anyway, I guess RUDE is really not the word that would describe her, but she insisted that WE WOULD NOT BE GETTTING ANY RESULTS....plain and simple.
So anyway, then she tells me that I had told her he had an appointment on Monday at noon......I told her that the gallium was at noon......and was wondering WHEN the clinic appointment was...........since they had CANCELLED his appointment for Friday.......
Anyway, to make a long story short I did talk to Dr. Y. He went and checked and said the scans weren't in the system. I know they were in the system...just no official report. So, of course I am really nervous.......but hopefully MONDAY we will get the other scan done and get all good news.
Today Devin has cold symptoms and a barky cough........just not up to par. I did take him out for a bit this afternoon to an RV show that was going on. He LOVES looking at RVs...especially since he is always designing these recreational vehicles. He enjoyed looking, but it wore him out. His strenghth just isn't there.
Thanks to you who came by to check on Devin. Thanks also for the phone calls and e-mails. Hope you all have a great Fathers day weekend. Drop Dev a line in the guestbook..thanks.
Friday, June 18, 2004
This is the BIG day. Scans this afternoon. I feel sick just thinking about them. The worst part is that we can't even get all of them done today. We have to go back on Monday for the gallium. Just pray that everything looks clear. I would love to think we are getting towards the end of treatment.
The kids had fun painting tiles at the Candlelighters dinner last night. Devin wanted to take his home, but the tiles will be put up in a new area of the hospital. The new ICS unit has the tiles as well and it is fun to watch the kids who have painted tiles come in and look for theirs. I think it will be a positive thing for Devin because best case scenario we will be making monthly trips up there for awhile.
We got home last night and Devin's teacher had stopped by. His "Treasure" book was inside the front door. He was really happy with it. It is all bound just like a regular book. He thought the stuff he had written was pretty funny. Now that I think about it, he was working on writing that book at the last 'scan day'.
Anyway, we will be low key around here this morning. Scans start at 2:00 this afternoon so it will be late when we get home. Devin is NOT thrilled to be going through all of these again, but he knows he has no choice. When you think of it he is pretty much used to having NO say in anything in HIS life. Cancer is so unfair.
Thanks for stopping by today to check on Mr. Devin. Please pray, pray, pray that these scans bring him nothing but GOOD news. He is ready to 'get on with his life' and be a normal kid.
Thursday, June 17, 2004
We just finished with the stepping stones. We decided to do them inside since it was so windy outside. They turned out really cute. Kara's is octagon and Devin's is a square. They both put lots of pretty stones on them; along with a hand print and a foot print. Dad will be impressed!!
Right now we are working on some more Father's Day surprises. The kids have also been drawing pictures. Tonight we will go to the Candlelighters BBQ up at PCMC and they will get to paint tiles. Devin is so excited. They will eventually hang the tiles permanently in the oncology unit of the hospital.
The sun has FINALLY come out. Its about time. We never did get the rain they predicted so maybe it will pass us by so we can eat outside tonight.
Devin just got a package in the mail from our friend Jimmy. Jimmy had read that Devin likes MAD magazine, so he found an old Mad book he had and was nice enough to send it. Devin just thought that was the coolest thing. Thanks also to Jimmy for the cool pasta basket we received last week. Some really nice surprises.
Not much else to report. The kids both act like they are feeling good. PCMC called and said Dev's 48 hour cultures were negative as well, so that is great news.
Tomorrow is a big day. Scans, scans and more scans tomorrow. Nervous just thinking about it. Dev will get injected for the gallium and have to make another trip up there on Monday. Prayers and positive thoughts are certainly appreciated!!
Thanks for checking on Devin. Please sign his guestbook and let him know you stopped.
Thursday, June 17, 2004
Overcast here today. We were going to make 'surprise' stepping stones for Father's Day today, but I don't think the weather is going to cooperate. We will see.
Devin woke up sniffling and coughing this morning. No fever though. His fever finally went away last night. Its wierd, he had a fever all day yesterday, then when he, Kara and dad went for a bike ride it disappeared. Who would have guessed?
Anyway, Kara really slept in today. She NEVER sleeps in, so of course I am wondering what is up with her. Probably just growing lots right now. It seems she gets taller each day. She's a good size 6 year old.
Hopefully the weather will turn nicer so we can get outside and play. Also, our Candlelighters is having a BBQ tonight so I hope it doesn't get rained out.
Thanks for stopping by to check on Devin. Please sign the guestbook and let him know you were here.
Wednesday, June 16, 2004
Not too exciting around here today. Devin developed a fever last night..nothing major, 99.3. He slept in this morning and has had low grade fever all day.
I talked to the clinic and they said to just keep an eye on him. His 24 hour cultures were negative, so unless he spikes a real fever or starts throwing up again he is ok to be home.
Its a nice day today. Not too hot, just right. We baked cookies this morning. Our neighbors, Kierstin and Christopher, had given us some really cool colored cookie dough last week, so we made all kinds of cool cookies earlier today. Butterflies, happy faces, you name it.
Its almost dinner time and Devin still hasn't eaten anything. He's still smiling though. This kid is tough. Its always amazing to me how little he needs to eat to survive.
Thanks for checking in on Dev today. He looks good and isn't complaining so we'll just keep an eye on him and hope he stays feeling as good as he does.
Please sign the guestbook and let him know you stopped by.
Tuesday, June 15, 2004
The clinic visit went well. We were only there for 3 1/2 hours so it went by very quick. Kara wanted to go too. She is still convinced that there is some kind of party going on up there. She is funny. She did talk Devin into doing some painting while they were waiting for his appointment. He enjoyed that.
All of his vitals were good. No temp or anything. The nurse changed his dressing and drew line cultures. The nurse was suprised to open the dressing change kit and find the new dressings. They are clear and you can see the site itself just fine......this is supposed to be the new and improved thing.....actually it looks GROSS....especially since Devin still has a stitch sticking out of his. Anyway, he is all changed and we are awaiting the results of 24 and 48 hour cultures.
The NP said it looked like Devin was severely dehydrated by the looks of his mouth. It looked very strange and light colored. They gave him 2 IVs and an antibiotic, just in case. He was acting like he was feeling better before the first IV stopped. All the docs were commmenting on how good Devin looked. His labs were drawn and they looked great. Evidently the new drug schedule is working well for him....not dragging his counts down. Great.
Devin talked about Arby's roast beef sandwiches all the way home...so he actually ate a few bites of one for dinner. He doesn't eat much anymore and he is off of steroids until July 7th when he goes in for more vincristine.
It is nice here today so he rode his bike tonight. Nicole, our neighbor came by and the kids had a great time killing snails tonight. We have some serious snail problems around here. They are eating all my flowers out front.
Tonight Devin had a low grade temp, but is feeling good. I'll keep checking him through the night and hope he continues to do well. He just looks and acts so good that it is hard to imagine anything could be wrong with him.
He is still scheduled for scans on Friday. We are anticipating them to be just great. He just seems so good right now. Its been a long, hard road and its about time for him to be able to relax and be a kid.
Thanks for stopping by. He loves the messages you leave for him, so please drop him a line.
Tuesday, June 15, 2004
Dev had an EXCELLENT day yesterday. It was Kara's first day of summer vacation and they both wanted to do something...anything. Of course, he isn't as strong as he thinks he is, so we kept it simple. We went to a dollar store, then went to Sweet Tomatoes for lunch.
Devin went WITHOUT HIS MASK yesterday and I think we all felt like different people. No one staring, no one pointing....it was just like OLD TIMES....before cancer invaded our lives. It was just so nice. Devin's self confidence was up and I don't think he even realized why...of course I knew.
After lunch we dropped by some more stores to look for a Father's Day gift for Randy. Devin found himself a cool new hat which he talked Grandma into buying for him. He is calling it a sombrero, but it is actually like a Panama Jack type hat...straw hat with a wide brim. Anyway, he looks and FEELS super cool in it. He has been wearing it non-stop since he got it yesterday afternoon. He even told me that he felt 'adorable' in it. He did. He was in such a happy, smiley mood that I took picture after picture of him in that hat.
All was well with Devin until about 10:30 last night. He had taken his night time meds and developed a headache. An excruciating headache. He was freezing, nauseaus, then fell asleep. What a way to end such a perfect day.
Anyway, by 12:30 he was up and throwing up over and over again. In his misery he said he needed to go to the hospital...so I take that as a serious sign he feels AWFUL. We got him cleaned up and back in bed by 1AM and he slept in until 10:30am.
To make a long story short, he is NOT complaining this morning because he wants to stay home. He considers every clinic visit a serious threat to his freedom of being home. I did talk to the clinic and they want to see him. We have an appointment in an hour. He is not going to be thrilled.
I'll update more when I know something. Please drop Devin a line and let him know you are thinking of him. Thanks.
Sunday June 13, 2004
We had a great weekend around here. Devin and dad went to the airshow at Hill AFB, while mom and I stayed back home and went to Kara's last day of kindergarten.
The picnic turned out well. The rain had stopped and we were able to set everything up under a covered area at the park. About half of the class showed up and it seemed like everyone had a great time. I know Kara did and thats what mattered to me.
Devin and Randy came to the picnic when they got back into town from the airshow. Randy said Dev really enjoyed himself, but was extremely worried about 'missing' Kara's picnic. He is such a sweetie. Randy also said he was so wiped out from all the excitement that he fell asleep as soon as they began the drive home.
After the picnic on Friday night we unloaded our stuff at home and took off for Kierstin's dance recital. We were so lucky. We got our seats just as the dance before K's first dance came on. Perfect timing!! It was a great show. I wish Devin would have felt like coming with us, but he was just too wiped out. Next time.
The airshow on Saturday was a couple of hours away. It was small, but nice. The weather was just perfect, maybe a little windy, but sunny and nice. The kids were really excited to fly in the helicoptor, but once they were on it they were scared to death!! Both of them were clinging to me the entire trip....which was really only about 5 minutes up in the sky.
Devin is looking good and more like himself every day. It feels good to finally be on the tail end of treatment. If things continue to go well he should be done with this cancer stuff in September of 2005. That sounds like forever away, but actually it will be over and done with before we know it.
Saturday, June 12, 2004
Hi, thanks for stopping by to check on Devin. Dev has been feeling good.
He and I (dad) went to an air show yesterday at Hill Air Force Base. Make-a-wish invited him, and made it really nice for us. They had reserved seating, snacks and drinks for us. The stunt pilots put on a really good show, but the highlight was definitely the USAF Thunderbirds! Six F-16s doing aerial maneuvers in perfect formation. Those jets and their pilots are amazing!
After the show, the pilots came over to meet all the make-a-wish kids. Devin met and talked to them, and they autographed their photos in his Thunderbirds booklet. Each of them were real gentlemen, and really liked meeting Devin. Thanks to make-a-wish for facilitating that experience!
We all went to another smaller-scale air show today. It was mostly ultra-lights and small aircraft at a county airstrip about 90 miles south of here.
Devin wanted to go for a helicopter ride. He was even able to talk Kara and his Mom into doing it. But I was the only one who enjoyed that. Devin and Kara were scared through the whole ride. The pilot liked doing roller-coaster turns and dips. The helicopter did not have any doors. I don't think that Kara opened her eyes once during the ride.
Thanks again for checking on Devin. We're all excited to finally have him on maintenance. His blood counts have been good, and he has been going out more without his mask. Scans are scheduled for Monday, June 21.
Thursday, May 27, 2004
I apologize for not updating sooner. Things are good. Devin is feeling good and eating so we are grateful for these things.
His appointment went well yesterday. His counts were still good from the neupogen so he was able to start on maintenance. What a vacation this new schedule will be. Every 28 days he will go into the clinic for vincristine, then five days of prednisone, 1 day of methotrexate pills and every day of mercaptopurine (6MP). This cycle will repeat itself every 28 days for the next 15 months. Not bad compared to all the other stuff he has done.
Scans are set up for Friday the 18th. He will get a bone scan, cat scan, etc. and get injected for the gallium. The gallium will be on Monday the 21st. We are hoping that we get a great report and even the small tumor that was still visible on the last scans will have disappeared. I'm trying not to think of scans, but of course they are forefront in my mind.
Devin is feeling good and acting more like himself. He has some funny stick up hair right now that people just can't leave alone. It is hard to walk past him without playing with his hair. He doesn't mind though. He is just glad to have hair at all. It seems like he has been bald forever.
Tomorrow is Kara's last day of kindergarten. I can't believe the school year is over. My baby will officially be a big first grader. It seems they have both grown up way too fast. They are both excited for Kara's summer break. Hopefully Devin's medicines won't effect his counts and he will keep feeling good. He is tired of this being sick stuff.
He is excited for the weekend. Kara has a school picnic tomorrow night, plus there are two airshows he wants to go see. He has been invited to an outdoor birthday party so it will be a very busy weekend. I'm hoping he has the strength to do half of this stuff and that will be just great.
Thanks for stopping by to check on Devin. He loves reading your messages so please drop him a line. Thanks.
Tuesday, June 8, 2004
Devin is asleep. He finally ate some scrambled eggs tonight and I think getting his tummy full actually did the trick. Now to get him upstairs and in bed. That will be a trick.
Yesterday was a wierd day. Seems like they are all wierd anymore. The deal with the clinic nurse is just exasperating. Honestly, every time I know I am going to have to deal with her I have to psyche myself up. It is amazing to me that she is allowed to talk to people (meaning me and whatever moms she relays information to) this way.
I have yet to find anything fun about this experience. One would think we could get something done around here, but we never do. Monday is one of those days I just wish someone would come in and bulldoze this house and make me move far, far away. I would like a fresh start for Devin away from all the memories of this experience.
I think I am too tired to be typing. I'm just about too tired for anything anymore. I'm tired, tired, tired and I feel like I did when I was seven years old and the firemen came to the school and talked to us about fire safety. Those guys scared me so bad that I wore my shoes to bed for a year after that speech about being prepared. I feel like I can't let down my guard at all.
I can't let down my guard and this is as relaxed as I have been in months. No, this life is no fun. I'm still waiting for something bad to happen. I read these other sites and read about these poor kids and I know Devin is not out of the woods yet. Scary.
Maybe they will let him start maintenance on Wednesday. I don't know. Who knows. I just know that out of the clear blue his maintenance has changed from 83 days to 15 months and that seems like such a huge deal. I can't even say that out loud.
Scans are still not set up. I spoke with the nurse no less than six times today and got nothing done but some IVs that I practically had to get on my knees and beg to get. How ridiculous is this???? I'm begging this uncaring person to order out some IVs to keep my son from crossing that line he has crossed before.
In my mind this is just such an easy request. Why does it take her 8 1/2 hours to get it done?? Within 2 hours of starting the IV I can see 'Devin' coming back....I mean, becoming himself....not some kid who feels so bad that he would just like to call it a day, but just feels too bad to fall asleep.
You can call me frustrated. I am. I just get so tired of fighting for the simple things. I can't get tired. This is the easy part of this cancer trip. Devin's got the real burden on his shoulders. He doesn't complain. He's just rolling with the punches. I just want it to be easier for him. Tuesday will be better.
Monday, June 7, 2004
We have problems around here. Again. Devin is still not eating and his WBC is now OFF the charts at 18.1. The nurse that I talk to said it is because of the neupagen, but it is much higher than it has ever been. (its usually about 6 after 3 shots)
To make a long story short, she decided that Devin was fine without talking to the doctor. After I have told her he is NOT eating, NOT drinking, throwing up (after not eating) and still having stomach problems. She doesn't think that is a problem..........why does she not think this is a problem????????????? Its not a problem:
1. Its not a problem because its not her kid who is
feeling this way.
2. He DOESN'T have a fever.
3. She doesn't want to mess up the clinic schedule by
adding another kid.
4. She doesn't want to admit that she DIDN'T talk to the
doctor AGAIN before telling me what the doctor thought.
I am frustrated AGAIN with the clinic. My home health knows Devin and KNOWS this is not a good sign for him. What I know is I DO NOT TRUST THIS NURSE AT ALL AND I HAVE ASKED MORE THAN ONCE NOT TO HAVE TO DEAL WITH HER...........the first major upset with this woman was back in December when she took it upon herself to 'read' Devin's scans and reported to me that there was NEW growth in his spine when the reality was the scans were good. She had no business reading those scans, just as she had no business today telling me what Dr. L. had said I should do. (especially when I know she DIDN"T talk to him)
When I finally pressed her to TALK to him, he ordered out some IV's for the next 2 nights to get Devin back on track. He is weak, not eating and is starting back on that trend where he figures out he can still survive without eating and risking tummy problems and/or throwing up. This took ALL DAY!! She called me a little after 5pm to tell me she had just called in the order to HH for the IVs...........of course this was AFTER they had already brought out my supplies for the week, so they had to make another trip.
Once again, thank God for our home health company. Without Critical Care Systems and their caring and educated staff I can only imagine what would have happened around here. They have argued in Devin's behalf many a times when I was too exhausted or too medically-challenged (meaning I didn't know what to ask regarding labs, etc). They are the BEST!!! We really appreciated the double delivery today.
So, anyway, Devin FINALLY ate after being hooked up to the IV for about an hour. Two scrambled eggs. Wouldn't be my first choice, but he has eaten a lot of eggs since he was first diagnosed. Hopefully he will keep them down and want to start eating so he will start feeling better. Fingers crossed.
This is Kara's last week of school. She is really wound up with excitement. She made cards for her teachers tonight. I hope they are half as excited to get them as she was to make them. She is a crafty little girl!! Always drawing hearts and flowers. Luckily Mrs. K (a real live artist for a teacher) has been teaching her some how-to's on drawing faces. She is getting good.
Hard to believe the school year is coming to a close. I think Devin went about three weeks in school before we got the shock of a lifetime. Someone at the hospital asked him what grade he was in the other day and he told them he didn't know. I bet he doesn't. This has been an 'interesting' school year to say the least.
Off to get Devin his last pill of the night. They stopped the fortaz this afternoon due to the ultra-high counts, so 'only' 3 antibiotics today. My pill poppin' son. I'm just glad he is keeping them down today. That is an accomplishment in itself!!
Thanks for stopping. If you're still reading this, do us a favor and sign the guestbook. I thought this warm weather would kick us outside, but the truth is, Devin's skin is so darn sensitive right now that we are VERY limited in being out.......meaning this guestbook keeps us from going completely nuts. Please sign in.
Sunday, June 6, 2004
Happy Cancer Survivor's Day!!!!!!!!!
Not a mention of this in our paper here. Kindof surprised me. Seems like a BIG deal at our house....I'm sure at lots of caring bridge houses!!
Dev is feeling ok today. He has more energy that he should. He's not eating and threw up just once today. He just keeps going and going and going...kindof reminds me of the energizer bunny.
Randy, his dad and Devin went a played a little golf this afternoon. Randy said Dev did pretty good and played all of the holes. I think Devin's favorite part is driving the golf cart. Devin is wanting to take golf lessons again. He went to a few last summer and enjoyed them.
We grilled chicken for dinner. Devin said it smelled good, but wouldn't even touch it. He refused cake and ice cream too.....I'm telling you this kid is NOT eating.
Devin is in a happy mood. He is excited to start on maintenance. Hopefully that will start this week. Russ will be out in the morning for another CBC. I'm expecting a good white count from the neupogen. I'm not so sure about the hematocrit. He is looking pale, even after getting a little sun this afternoon. Watch and wait.
This is Kara's last week of school. She is excited. She's been telling me all of the fun things she wants to do while she is on summer break. I just hope that Dev can get his counts UP and keep them UP so we can do something.
We've made a list of some of the things she wants to do and we are going to make a jar with all of the things in it. Every day she will pick something and we will do it. I'm going to have to figure out how to color code the things so I don't have to tell her no too many times. If Devin can keep his counts up we should be able to do just about anything; except swimming. (He still has his broviac)
Hope you all had a great weekend. It is beautiful and sunny here. It feels like summer.
Sunday, June 6, 2004
2 AM
I can't sleep. Of course I am wondering about Devin. I guess I should say he had a good day on Saturday....but is throwing up 'just 3 times' when you haven't eaten 3 bites really good?? Maybe it is.
I guess the point I am trying to make is I am wondering if he will be able to get counts up and stay well enough to stay home. He's not eating, not drinking enough and throwing up.....so who knows what will happen next. No fevers and nothing else wierd going on. I do notice his lips are getting more pale and his freckles more prominent. This is usually a sign of low hematocrit. Watch and wait.
He really is enjoying being home. He and Randy rode bikes this afternoon and he hit some balls around in the back yard. I hope this nupogen does the trick to get these counts up.
Kara, on the other hand, had a great day. We got to see Junie B. Jones (from the kids books) this morning. Kara loved it!! She even got a couple of books signed and had her picture taken with Junie B. This afternoon she went to a rock climbing party for one of her school friends. A big day for the sister.
Anyway, hopefully Devin is just worn out from trying to over-do. It doesn't take much to wear him out, so hopefully he will wake up ready to take on the world. Tomorrow...actually today..June 6th, is National Cancer Survivor's Day. We are planning on doing 'something'. We don't know what, but one thing is for sure, we certainly have a lot to celebrate.
Thanks for stopping by to check on Devin.
Friday, June 4, 2004
Hey, Devin here...I'm home from the hospital. I hope I get well soon. I'm feeling pretty good. My mom just gave me a shot and I didn't like it. She also just gave me some fortaz. Thats the stinky medicine.
I got a neat surprise in the mail today. Mary Pope Osborne, the author of the Magic Tree House books, wrote me back!!!! How cool is that?? I was so happy to get her nice letter. She said that she really liked my poem. She also wrote about some new books she is writing. These are some new books that aren't out yet.
Day before yesterday my sister and I got some cool new matching t-shirts from Mrs. Pam. Guess what they say??????
Ross Elementary !!!
I think that is pretty cool. I wish I could go to a school named after ME. Thanks Mrs. Pam.
I'm glad to be home. I have to just get one more shot, but lots more drugs. My sister came home and I was so glad to see her. We miss each other when we can't be together. Tonight we are going to eat the butterfinger cake that we made for my dad's birthday.
I'm wearing my Wildfire shirt today. I was telling the nurses at the hospital about my trip to Silver Dollar City last summer. It was a lot of fun. They have some cool roller coasters there.
To all my Aerosmith friends I would like to tell you that Aerosmith will be on the A&E channel tonight.............................................................................................................................................................................................................I'm so EXCITED!!! I'm going to record it!! It comes on at 7pm here. Watch it!!
Thanks for checking on me....Devin
Friday, June 4, 2004
Dev had a good day yesterday. He didn't eat any of his lunch, but I tasted it and I really didn't blame him. He had good energy yesterday and had fun riding the recumbent bike they brought in for him. He likes to keep busy. He also has been shopping online for an airplane and found a couple he liked online......just need to get him a pilot's license and a million dollars and he would be set. He has such good taste...its a shame he isn't independently wealthy.
The mouth test came back positive so they started him on yet another antibiotic. That makes three he's on since being admitted. They also started him back on neupogen shots yesterday.
Mike from childlife came by again for another connect four championship. Devin is still winning. A doc came by last night and played with him. The first dr. Devin has ever had do something like that. He enjoyed it...nice to have some visitors in here. It gets real boring quarantined to the room.
Dev was up too late last night. He talked me into ordering a pizza (free from Dominos) and some cinnamon sticks. He actually ate a couple of the cinnamon sticks and drank some coke.....so plenty of sugar anyway.....hmmmm..wonder why he couldn't get to sleep??
Anyway he is still snoozing; which gives me time to update his site. He looks pale lying in bed, but due to the neupogen he actually has some counts today. There is a chance they will send him home. He is ready whenever they are.
Thanks for stopping by. Please sign his guestbook and let him know you were here.
Thursday, June 3, 2004
Dev is looking good today. He took a LONG shower this morning to get rid of that horrible fortaz smell. That stuff is stinky! He looks like he is ready to go somewhere fun and exciting; he just looks so darn cute today!!!
His site looks ok...probably a little red, but they don't seem to concerned about it. Peridex has been ordered for his mouth, but not here yet. They took a swab of one of th mouth sores to see if it is 'anything'.
I ordered him some lunch. I told him if he would start eating he would PROBABLY get out of here sooner. I'm sure it won't hurt anything to get some food in his system. I'm not counting on him eating anything, but its worth a shot. Once this kid figures out he can still function without eating he quits.......silly kid.
Thanks for the e-mails, phone calls and messages regarding Devin. He loves them and so do I. Thanks!!!
Thursday, June 3, 2004
Devin is still sleeping in this morning. Randy stayed with him last night and said everything went just fine. No major fevers, no high bp; so things seem to be going better. Counts are staying about the same...platelets have dropped a little, but still up around 90. (thats the most Dev has had since I don't know when) Anyway, the biggie...ANC is still ZERO.
Devin took a good nap yesterday and woke up feeling better. His color looked pretty good; which makes me feel good. Not too pale and not too pinky. Just looks sick.
He's still not eating much of anything. His mouth is now in worse shape with lots of gum problems. They are a bright red and now it looks like the gums are separating from his teeth...not a good thing. They called in a dr. who said she didn't know..I could have guessed she didn't, but get a dentist in here. The way this is opened up is just a real good way to get 'anything' in there. His gums are sore. Just a couple of mouth sores that I can see.
He played connect four with Mike again yesterday. I had no idea that they had some kind of championship going on in there. Devin has been declared the King Punk of Connect Four. He is very proud of his title.
Randy, Kara and Grandma came up last night. Dev has been quarantined to his room so he's tired of that already. They have him an exercise bike in there that he can get on when he feels like moving around. Kara loves the bike. She loves the hospital in general. She was drawing pictures for everyone at the hospital last night.
Devin just looked so much better yesterday afternoon. He hasn't asked much about coming home and we don't talk much about it. They are wanting to try and figure why he has this low grade fever before sending him home. Seems like a good idea to me. I still can't believe that discharge planner yesterday.....
Hope you all have a good day today. I will try and update again soon when I get up to the hospital and check him out for myself.
Wednesday, June 2, 2004
Dev is feeling awful. He is sleeping now and just looks so sick. They don't seem all that worried about him today. The discharge planner came in this morning trying to talk to me about sending him home today. I told her that he was still running a fever and none of his tests have come back.....PLUS, Devin had NOT seen a doctor yet today.
So anyway, the labs are not back for the cultures. Thats probably a good thing. If the line cultures were positive I think they usually show growth before 24 hours. The CBC is holding ok...just the platelets have dropped. Nothing has gone up,so still no ANC.
Xrays were clear. That is good. He is still saying his back hurts, but everything looks good there. What a relief.
They are still giving him fortaz and flagyl, plus his regular meds. I don't plan on taking him home until his fever is gone and he looks more with it. Right now I would imagine he wouldn't be home long enough to unpack before we had to come back up. I haven't seen him look this bad in a while. I just feel so bad for him.
His glucose level is high, but they don't seem to be too concerned. It has never been too high........usually they like to wait and see before they do too much investigating.
All in all a frustrating day. He has been confined to the room because of the c-dif they said was not contagious....but the reality is he doesn't feel good enough right now to care.
Thanks for stopping....please leave Dev a message.
Wednesday, June 2, 2004
Dev is still sleeping. They gave him the fortaz IV a little before 11pm and within about 20 minutes he turned bright red, felt nauseaus and started sweating. I called the nurse, who called the dr. Anyway landed up with a fever and really having to go potty a lot.
He kept complaining of the smell, which turned out to be him and all of his bedding (from the fortaz).....so changed everything, kept watching. He was very agitated by this time and still pinky an hour later, so finally gave him some benadryl.
They think the reaction is from fortaz, but it could be a reaction to the niphedipine they had given a little before for HIGH blood pressure. No one really knows since he has had boyh of these drugs before without problems.
So the plan is to give the fortaz again this am at 8 and watch him VERY closely. Still waiting for the xrays from yesterday eve (of his back) to be read.
Thanks for your continued thoughts and prayers.
Tuesday, June 1, 2004 9:52 PM CDT
Devin is feeling ok. They sent him down for xrays of his back about 6pm. I guess we will hear about those tomorrow.
He came back as C-Dif positive a little earlier so they started him on the flagyl pills every 6 hours. He is on the fortaz IV as well.
Randy, Grandma and Kara brought some cake and presents up to the room. Everyone on the floor is amazed at how long Kara's hair is...these people aren't too used to seeing kids with hair...much less hair down her back.
Devin has enjoyed playing 'Connect Four' a lot of the afternoon. Mike the childlife guy brought it by since he couldn't find a Nintendo. He has been drawing on the dry erase door in the room too. Tonight Aerosmith was on tv so he thought that was cool.
Hopefully he will be getting tired pretty soon. It has been a long day and I am exhausted. I'm glad he's feeling so good and they are really checking him out. It has been such a different experience this time. It just seemed like we had non-stop docs and nurses today trying to figure him out. This is good, but also worries me.
There was talk of putting him on the nupogen, but nothing yet. Before they have wanted him to come back on his own...we will see. Watch and wait.
More later...thanks for stopping....please sign and let Devin know you are thinking of him.
Tuesday, June 1, 2004
Labs are bad. ANC is zero. I was told to bring him straight up here to be admitted. He is in room 4409.
He didn't argue or complain about coming up. He actually acts relieved. He has been acting like he felt so much better just walking through the doors of the hospital.
They've run all kinds of tests...the usual blood cultures, urine, etc. Now we are waiting to get some xrays done on his back.
He's got some mouth sores, but has eaten some chips, so they're not really slowing him down.
He's busy making a door hanger for his room right now. He is content, but worried that he's going to miss dad's birthday cake. I told him we could have cake at the hospital............Happy Birthday Randy!!
More later.
Tuesday, June 1, 2004
Noon here....Devin still has a temp..AND we don't have labs back yet. Just talked to home health and they don't have them yet either. My first thought is...oh no, they're ocunting them by hand, but evidently the lab is over worked from too many labs coming in STAT.
Frustrating to say the least. The clinic won't talk to me until they get labs...so basically here we sit. Devin openly admits he feels awful. He doesn't look pink now, just pale.
Watch and wait, watch and wait. Russ just called to see how the labs looked. He was shocked we didn't have anything 3 HOURS later!! Amazing.
Devin is watching tv and just lying around. I got the cakes baked, now just have to wait for them to cool to ice them. AT least we got something done today.
If you get a chance, stop by and wish Jaxon a Happy 3rd Birthday. He is a real cutie who just happens to have the same birthday as Dev's dad: www.caringbridge.com/mn/jaxon
I'll update when I know something...thanks.
Tuesday, June 1, 2004
Well we didn't start off too well this morning. Devin finally went to bed about 2:30 this morning. At 1:30 he told me he didn't feel good, but no fever. Bright red ears, but no fever.
About 8:45am Russ came over. Devin woke up and was talking to Russ and told him he felt awful. This was BIG news because Devin NEVER talks about feeling bad. He learned early on that if he admitted he was in pain or not feeling good he would most likely land up at the hospital.
So anyway, Russ says he is flushed. His BP is very good...which is very surprising. Seems like usually if he gets that bright red ear thing that his BP tends to be high, but 100/60. Thats good. Not too high, not too low.
His temperature was a different story: 100.8. The hospital's criteria (unless they have changed it since last week) is 100.8 for an hour or more he must be brought in. So far fever is sticking around and he feels like crap. Looks bad and is chilling. Seems like we've done this before.
Devin is mad that he's possibly getting sick. We're waiting to get his labs to see where his blood work stands. He looked so good yesterday, even up until 1:30 this morning, so it is hard to fathom how fast things can change.
He'll have to miss his home schooling; again. He was disappointed about this. He has quite a bit of stuff he has been wanting to show his teacher. Hopefully she will get to come over soon. He had me take a picture of him at the hospital a couple of weeks to give his teacher. It is a picture of him doing school work. He is funny.
Anyway, right now just waiting on the labs to come in. Watch and wait. Watch and wait. Seems we say that alot around here. For now, Devin has me busy baking some birthday cakes for Randy. He wanted a butterfinger cake, while Kara opted for an oreo cake. Trying to get something, anything done before we hear from the clinic. Happy Birthday Randy!!!
Monday 5-31-04
Its almost midnight and Devin is still going strong. He has lots of trouble getting to sleep at night. He seems to be able to stay up until he basically passes out. He amazes me that he can stay up and be so alert at this hour.
Randy and Devin went out looking for a bike for Randy's birthday. They came home empty handed. Randy said that most of the bike shops were closed today. Anyway, he called one of his friends and they said come over and they would give him a bike. So, Randy has a bike. Now, to find a helmet to fit him.
We have no graves to visit here. I miss that. It was always such a big deal when I lived in Oklahoma. So many relatives graves' to visit. I remember hating it when I was a kid, but looking back on it as I 'grew up' am glad my papa took the time to show us where all of these people are buried. I feel bad that I couldn't visit my grandma's grave for memorial day. I am assuming they have all of her information on her headstone now. She died just 2 weeks before Devin was diagnosed so needless to say I haven't been back to OK.
I have not been able to think today. I think of my poor Nanny sitting back in OK with her delusions and all of my poor friends that have lost their children to cancer. I have never known so many dead until this year. I can't even begin to count how many have gone since Devin started treatment. Believe me, we know how lucky we are to have him here with us.
The what ifs and the why's keep creeping into my head. My mind seems to be mushy. I hate this cancer. I want to know it is all gone, but I guess that won't be 'official' until he's been off of treatment for five years. That sounds like forever away. I know he can do it, but it is certainly not the life I had envisioned for him. This lady at the grocery store asked me the other day if I thought Devin would ever truly be free of cancer.....well, I sure as hell hope so. To think of this as a lifetime disease plain and simple sucks. He deserves more than this. Who doesn't?
Tomorrow is Randy's big day. He'll be 38. The kids have a cake in mind that they want to fix and hopefully Devin will actually eat some of it. He's not been in much of a eating mood. Eats a couple of bites a day and just keeps on going.
I wish his brain could relax and be a kid....he seems not to be able to relax. I've talked to Dr. L. about it, but he wants counseling/relaxation exercises. Easier said than done. I will try and get something set up tomorrow, plus I need to get some stuff in place about testing and such for getting back to school. Maybe I am jumping the gun on this, but I think it would make him feel better about things...who knows...maybe I should wait until after these next scans....which is something else that needs to be scheduled.
Russ will be here after Kara leaves. He's working Devin in on his day off..how nice is that?? I'll tell you, I don't know what we would have done without him. He has helped us out so many times. Great nurse and friend. Devin is excited to ride bikes with his boys again soon.
Sunday, May 30, 2004
Good Sunday here. Sunny and warm. Randy lit up the smoker this morning and has been 'smokin' all day. Hopefully sometime soon he will be bringing in something for us to eat!! Smells really good.
Today mom, Kara and I went out shopping. Turns out that Randy is going to have a birthday on Tuesday and none of us had bought him a thing. I think he really wants a new bike, but he'll have to go pick that out himself. I'm sure I would get the wrong thing and have to hear about it for the next 20 years at least. So, he'll be on his own for that. Kara did pick him out a couple of things so he will have something to unwrap.
Devin is feeling good. His mouth is still sore, but honestly he is dealing with it just fine. He is tough; thank God for that. In the scheme of things these mouth sores are just annoying. Thats all. He has dealt with so much over the past 8 1/2 months that mouth sores seem like a cake walk.
We have been talking about when Devin can go back to school. The doctors want his counts up somewhere in the normal range for a couple of months before he'll be eligible. Until then we will continue our home and hospital stuff. I talked to the education advisor up at PCMC last week and she helped outline what needs to be done to get him in school. Daunting, but not impossible. He wants to go NOW. He is tired of this stuff. Cancer is no fun when you're 100 and its NO FUN when you're 8.
For those of you who know Angel Chris, just a reminder that today is her birthday. Chris is one of the behind the scenes 'Angels' that keeps these caringbridge sites looking GREAT!! Chris, we appreciate you and hope you have an extra special day!!!!
Thats all for now. Thanks for stopping by to check on Mr. Devin. He appreciates the messages, so please drop him a line.
Saturday, May 29, 2004
Lucky us, the weathermen were wrong. By 11am this morning the sun was shining. It turned out to be a nice, sunny day. A nice change from all of the rain.
We went driving all around town today. I drove right by the car dealership and forgot to get my plates. I guess I am holding out for them to find me that second set of keys and remote they promised. It will give us something to do next week.
We took a good long walk today. Devin found another helmet in the garage. Let me tell you there is lots of stuff in there I have never seen before. It is like a bottomless pit of stuff that we might or might not need in this lifetime. It is such a mess...and that is after mom and I spent the morning cleaning up after Willie. Poor Willie he has a sensitive tummy. I will be keeping the door open tonight for him. I have learned my lesson: when a dog's gotta go, he's gotta go.
We were going to ride over by Russ' house and show him Devin's mouth. Dev's gums are bright red and extremely sore. I had to help him brush last night and just about gave him a blood bath. It stopped quickly, so not a platelet issue, but something is amiss. He is building a lot of plaque too. I put him back on the rinse last night and he's been using it all day.
Anyway, its always good to see Russ out and about, in regular clothes being dad to his four boys rather than taking Devin's blood. He is such a nice guy and we feel very lucky to have him as our nurse. He wasn't quite sure about Devin's mouth, so as usual it is a watch and wait.
No new news here. The kids are happy and playing pretty good today. They are both full of energy even after a long walk that I figured would have worn them out. I guess we'll go a little further next time. I'm trying to get Devin on a more regular sleep schedule.
Thanks for stopping by. Hope you have a great weekend. Please drop Devin a line and let him know you stopped.
Saturday, May 29, 2004
Devin is up early this morning. These kids DID NOT want to go to bed last night. They were being goofy and couldn't stop giggling. You know, pretty much acting like kids. It was fun to watch them playing so well together.
I woke up this morning to hear scratching at the garage door. This was not good news. I opened the door to find the outside door from the garage had blown shut over the night. Poor Willie and Casey had been trapped inside needing to go potty for who knows how long.
Anyway, to make a long story short, Willie got tired of waiting for someone to let him out. I now have a huge mess to clean up; which included Devin's bike helmet that Willie decided to try and eat over the night. What a dog. Just when I think he is learning he pulls something like this.
So, sounds like we will be going somewhere today to find Devin a new bike helmet. He doesn't know yet and I'm pretty sure he is going to be mad. I know I was mad, but I think I'm the maddest at the other 'mess' that was left. What a dog.
Anyway, supposed to be raining most of our weekend so I'm sure we will be hanging out at home. Thanks for stopping by to check on Devin. He is looking and feeling so much better than last weekend. If you get a chance, go wish Happy Birthday to Devin's friend Christopher. His site is www.caringbridge.org/ca/christophersfight
Thanks....
Friday, May 28, 2004
We have had a good day here today. It was nice this morning, then turned cold this afternoon. Rainy tonight and supposed to be rainy tomorrow too. No big deal...we didn't have any real plans. We'll just stay home and relax.
Thanks to all of you who always come by to check on Mr. Devin. I haven't been to very many sites today. I've been playing around on the internet looking at houses that maybe some certain grandma might want to buy. I don't think I have convinced her yet, but the kids and I have been working on it.
Devin has been in a great mood today. He and Kara have been getting along pretty good. Randy was working at teaching them chess again tonight. Kara is pretty into it, but Devin thinks its too time consuming for him right now. He'd rather surf the web for an airplane to buy. This kid has big plans.
I've got his teacher set up to come over on Tuesday. We are planning on getting his CBC done then and hopefully his WBC will be up. It scares me to expose him to too many people when his counts are so low. I don't want him to get sick. Right now his WBC is pretty much non-existent so hopefully it will go up on its own and he can avoid the nupogen shots. He hates them.
Finally got to talk to Nancy, a friend I have met off of Devin's site, tonight. What a conversation we had. We talked and talked and talked. When I finally got off of the phone Devin asked me who I had been talking to; I told him Nancy. He was surprised I was on the phone for so long. He said HI to her, but that was it. He usually doesn't talk much on the phone.
Nancy and I talked about Mrs. Pam. She was surprised to learn that I had never met her. I explained that Mrs. Pam is my friend Sheila's daughter's preschool teacher. (Sheila and I have been friends for about 100 years growing up in OK..she now lives in St. Louis) Mrs. Pam is just the BEST!! She is always so good to keep Devin and our family in her thoughts and prayers. She has been so kind to Devin and Kara. They just think she is the best...next to grandma of course.
Sometimes when I'm signing friend's pages I noticed Mrs. Pam has signed them just before me...what a lady. Sounds like she is just busy, busy, yet finds time for my Devin. Thanks Mrs. Pam and thanks Sheila and Aryn for sharing her with us. I know that little Aryn is going to miss her next year when she's a big kindergartener.
Hope everyone has a great UNEVENTFUL weekend...this to me means no emergency trips to the emergency room and no fevers. Funny how this time last year how boring uneventful would have sounded............times have changed!! I wouldn't trade it for anything. Devin's going to beat this CANCER and we will be 'normal' people once again.
Thursday, May 27, 2004
Devin is feeling good. Randy just did his dressing change and that looked good too. Two for two is good. He only screamed a little when the bandage came off so that is pretty good.
We've been talking to Devin about the possibility of getting a port. He doesn't want to get poked, but he wants to be able to go swimming. Dr. L. said that there is a possibility that his veins will NOT be able to handle the vincristine, so a port is an option....actually an option AFTER he gets his counts UP and keeps them up.
We took a long walk tonight. Devin rode his bike and Kara rode her scooter. For some reason I don't think she is too impressed with her fancy pink bike. She always wants to ride the scooter. Casey and Willie went too. Poor Casey was worn completely out by the time we got home. Casey turned eleven this year and has arthritis in his hips. Poor dog.
Good day here for the most part. Grandma had Devin working on some math homework while Randy and I went to the dentist. This afternoon he FINALLY got around to working on thank you notes. Seems everything gets done around here a little slower these days. I guess better late than never.
Thanks for checking in on Mr. Devin tonight. He is wound up and wanting to stay up and watch some movies tonight. He has turned into a night owl for sure. Fine with me. I am too, just I have to get up and get sis ready for school in the morning.
Raining now...supposed to rain all day tomorrow. We need it so I'm not complaining. Thanks for stopping by.
Thursday, May 27, 2004
Today has been a good day for Devin. Uneventful, but that is not always a bad thing. He slept in, but has felt and looked good all day. Its good to see him with some 'color' in his face. He always looks so sickly when he is in dire need of blood. I'm glad he got his blood and is feeling good.
He has been laughing about the 'trip' yesterday. He isn't mad or anything, just asking when we are going to the Grand Canyon. It seems he knows the answer before he even asks the question: When he gets his counts up and keeps them up. Hopefully they will start rebounding and he will be able to start maintenance.
It seems he has come so far, yet still has a long ways to go. Maintenance just sounds so great compared to all the stuff he has been through over the past eight and a half months. Sounds like a real vacation.
Today he just seems so much more like himself. It is good to see him looking so good. It worries me though too. There was another obituary in our paper for yet another PCMC cancer kid. It always feels so shocking. I hate the feeling. The last time I saw this girl she looked good and was giggling around like teenagers do. This cancer stuff is just so unfair.
Its amazing to see theses obituaries week after week and not wonder why? Its even more amazing to see that life still goes on all around us. Even when Devin is having his 'good days' we are so far from our old 'normal' that it is dizzying. I have never, ever wanted to speed through any part of my kids' lives until now. But honestly even now I can't say that this has been a bad experience. It has not been pleasant, or even fun, but it has certainly been a learning experience.
I feel like my family has been to hell and back and I know any and all of us would do this all again to save this boy's life. He is so special to us and I just can't imagine how these parents can deal with the loss. It is depressing and thought provoking.
I guess you could say I have been in a depressed mood today. I should be happy and glad that Devin is doing so well, but the truth is I am scared. I am so addicted to these caringbridge kids and their families that when they hurt I hurt too. I know Devin has it a lot easier right now than many and for that I am thankful.
Please continue to pray for Devin and all of the other caringbridge kids and their families. No one deserves to watch their loved ones suffer with this. Thanks to all of you who continue to check on Devin.
Thursday, May 27, 2004 8:43 AM CDT
Good Morning!
Well the kids had a good time yesterday. Turns out we DID NOT go to the Grand Canyon as we had been told, but took a flight over the Salt Lake Valley. The kids had fun, but Devin was disappointed because he was really looking forward to the Grand Canyon.
It was a good day. We got to the airport before 11am and they had all kinds of food and stuff set up. We got to see the governor and Orrin Hatch along with some other local celebrities. Anyway, we did have fun, just didn't get to go to the Grand Canyon.
It seemed like we were the ONLY ones on that flight that DIDN'T know there had been a change of plans. Wierd. They gave everyone a bag of goodies as we boarded the plane. The kids thought that was just great. We flew with a few other kids from Make A Wish, as well as some kids from PCMC, Easter Seals, Big Brothers, Special Olympics and the Guadalupe School. All of the kids were very excited.
As we landed the flight attendants passed out special 75th anniversary pins to everyone on board. Devin immediately put his on and wore it all day. After we landed the kids got to meet with the pilot and sit in the cockpit. This, of course, was the highlight of the trip.
All in all it was a good day. Devin is now asking when we will be taking him to the Grand Canyon. Of course the answer about that trip is the same as the answer to all the rest of his questions: When you get done with your chemo and your counts stay good.
He is looking good and feeling good. The blood really perked him up and gave him the boost he so desperately needed. Hopefully he will stay feeling good and do nothing but get better from here on out. He's got to get his counts up in order to start on maintenance, so thats what the goal is right now.
Its rainy and yucky here today. Its supposed to be this way all weekend. We went and picked up some movies from Jeremy yesterday afternoon so maybe one of those will be good to watch. Also, Mrs. Winter sent Devin home a whole book of math problems to work on so he has lots to do.
Thanks for stopping by to check on Devin. He appreciates the messages you leave him in the guestbook so please if you have a moment sign and let him know you were here. Thanks.
Tuesday, May 25, 2004 11:00
Devin is getting two more units of blood today and possibly platelets. It will be a long day. He was actually looking forward to getting the blood today since he had such a crappy day yesterday.
HOpefully everything will go smoothly and we will be home later on tonight. He has been pre-medicated and is asleep now. His blood pressures are lower than normal so they are watching him for that.
He is excited for tomorrow's big day: Our trip to the Grand Canyon. We just read a story about how Paul Bunyan supposedly built the Grand Canyon by dragging his ax so he thought that was pretty cool.
Thanks for stopping by to check on Mr. DEvin. WE are having computer problems again at home so I apologize for not getting around to check on all our buddies.
Please sign Devin's guestbook and let him know you stopped by to check on him. Have a great day....and THANK YOU, THANK YOU, THANK YOU to blood donors everywhere!!!
Tuesday, May 25, 2004 11:00
Devin is getting two more units of blood today and possibly platelets. It will be a long day. He was actually looking forward to getting the blood today since he had such a crappy day yesterday.
HOpefully everything will go smoothly and we will be home later on tonight. He has been pre-medicated and is asleep now. His blood pressures are lower than normal so they are watching him for that.
He is excited for tomorrow's big day: Our trip to the Grand Canyon. We just read a story about how Paul Bunyan supposedly built the Grand Canyon by dragging his ax so he thought that was pretty cool.
Thanks for stopping by to check on Mr. DEvin. WE are having computer problems again at home so I apologize for not getting around to check on all our buddies.
Please sign Devin's guestbook and let him know you stopped by to check on him. Have a great day....and THANK YOU, THANK YOU, THANK YOU to blood donors everywhere!!!
Tuesday, May 25, 2004
Well we are at the clinic now getting Devin the blood he should have received on Sunday night. For whatever reason the doc on call Sunday wanted him to get one unit Sunday in the RTU and get re-checked Monday morning, then get the other unit (and possible platelets) in clinic on Monday.
Anyway, got a call yesterday morning from home health about 9:15 with Devin's counts. BAD. The pharmacist told me tht they had been faxed and received at the clinic PRIOR to her calling me. I jumped in the shower to get ready expecting the clinic to call at any time. Finally about 10am, no phone call, so I call clinic.
I talk to the nurse case manager who tells me "We don't have Devin's counts, we will CALL YOU when we get them". I assured her they had been received as HH had talked to the receptionist as they were coming across the fax machine. NOPE, we don't have them. So I proceed to give her the numbers and explain that Devin had received one unit in the RTU on Sunday night.
Her answer: "Well why didn't they go ahead and give him both units in the RTU" Good question, I asked the doctor to do it that way and she thought making 2 trips to be pre-medicated for blood would be easier than one. So when do you want us in the clinic? Well, she said she would need a copy of the labs as she COULD NOT take MY WORD for the counts. Anyway, I felt this was pretty insulting...so then she goes on to tell me how busy they are that "she has no idea when she will have the TIME to call for his counts".
This was not the end of my frustration with this lady. I had left 5 messages for her LAST WEEK which went unanswered regarding an appointment she had scheduled for Devin on June 9th. The appointment info was left on my answering machine and involved giving Devin a lumbar puncture which I could find no where that he was due. She told me that she had called and talked to ME about this on Tuesday and had it noted in his chart......I told her that was a pure and simple LIE...then she backtracked to tell me that the doctor had called and discussed this me. I told her again, that it had NOT happened. I have two phone lines with caller id and answering machines: NOTHING.
Anyway, yesterday was exhausting. AFter she got the official counts AGAIN from HH she called me back about 11:15am to tell me it was 'gettting late' and the clinic was busy with sick kids. HELLO.....the day the clinic isn't busy with sick kids is the day they are no longer in business. Long story short: Devin DID NOT get blood yesterday and as a result had a horrible, crappy day. He felt awful and told me flat out that he did.
Devin could not understand why he didn't feel better after getting blood on Sunday night. I told him that he only got a portion of the blood and he would have to get enough to tank him up in order to begin to feel good again.......................frustrating!!!
Monday, May 24, 2004
Well, we got home later than we were expecting: 2am this morning.
Devin started itching about 11:15 last night so I went out to get the nurse. By the time I got back in his room his face was getting puffy and turning red. She turned off the blood and asked me what 'they usually did' when this happened.
Anyway, he received some more benadryl in his line and re-started the blood. After he got the drugs his blood pressure and pulse ox were too low. They ran the blood even slower and eventually finished the one unit at 1:15am. By 1:30 we were cleared to go home.
Devin was VERY sleepy so the nurse helped me get him into the car. It was COLD when we left the hospital. Devin woke up and was mad when the cold air hit him. Lucky for me the heater in the new car works very well. He was warmed up and asleep before I got out of the parking lot.
I was surprised at how well he handled the hospital experience yesterday. He was just so chatty with his nurse and acted like he enjoyed being there. About 10:30p he asked if we could go up to 4th floor and see who was there. He saw a lot of nurses he knew and of course our friend Christa was working too. He talked for a little while then we went to the vending machines and got him a snack.
Right now he is still snoozing and we are waiting to get his blood results. Russ was out at 7:30 this morning for another CBC so I should hear results soon. The dr. yesterday felt like he would need another unit of packed cells today with the possibility of platelets as well. We will see.
Thanks for stopping by to check on Devin. Please sign his guestbook and let him know you were here.
Sunday, May 23, 2004
A quick update:
Got the call from PCMC that Devin's labs were bad. (Russ from HH had come out earlier this afternoon and took the CBC because Devin looked so pale) Anyway, his hematocrit was at 17, WBC 0.7, ANC 200, platelets at 23. Not good.
Dr. wanted Devin to get a unit tonight in the RTU, then go home, re-evaluate labs in the am. So, we get here a little after 5pm...get into RTU room about 5:20p....get a nutso resident that asks ME what she needs to do to get Dev some blood. I explain that SHE needs to write up orders for the clot tube, the pre-meds, then the blood....so anyway, get that taken care of.....
8:45pm, just brought blood into Devin's room. He will get it slow....should finish in about 3 1/2 hours, so will be a late night. The nurse told Devin he could stay the night since he will most likely be back up here after labs are drawn in the am (Russ is coming at 7:25am) for more blood and possibly platelets.
I have no idea why we are doing things this way....seems pretty crazy to me......but we shall see how it goes. Devin really likes his nurse tonight and he is busy playing Mario on the nintendo, so life is good.
Thanks for stopping by to check on Devin.....going to be a long night. No computers in these rooms so I will update when I can.
Sunday, May 23, 2004
We have had a pretty good weekend here. Randy got in late Friday night from his Kentucky trip. The kids were excited to see him. Randy was really impressed by how much hair Devin had grown over the week while he was out of town. Devin was looking and feeling good on Friday and Saturday.
Saturday night we had Kara’s dance recital. Grandma wasn’t feeling very good still, but she went with us anyway. We got to the auditorium and figured out we had forgot to bring a mask for Devin. It was his first outing without a mask since he was diagnosed. Scary. I guess we all figured there was a mask in the truck, but we did a very thorough cleaning last weekend and so there are no extra masks in any of the vehicles.
Kara did a great job. She just sparkled on the stage. Randy's parents and the Wakemans also came to watch her perform. Devin brought her some flowers to give her after the dance recital. She was thrilled.
The Millers were going to come and watch, but they landed up putting their house on the market last night and were meeting with their realtor. I am going to miss them so much. They have been such a big help with Kara this year; taking her to and from school with their kiddos. They brought Kara a cute bunny this morning and told her they were sorry they missed the show.
Today Devin is beyond pale. His lips are the same color as his skin; which is basically transparent. He has very little energy and is complaining of being cold. After staring at him most of the morning I couldn’t take it any longer and called Russ. Russ got an order from the hospital and came over right away to draw blood. He was going to take it up to PCMC and see how it was. We are guessing his hematocrit and possibly his platelets are low. His blood pressure is lower than normal too.
So right now just waiting to see how the labs turn out. He was due to get them drawn in the morning, but honestly the way this kid looks it would not surprise me if anything happened. It seems like things can turn on a dime and I would really like to know TODAY, not tonight in the emergency room, how things look.
I can’t help but feel guilty for not having that mask for Devin yesterday. I know his immunity just isn’t there and it is totally out of character for us NOT to have the mask. Please keep Devin and the other caring bridge kids in your thoughts and prayers. Thanks for stopping by.
Friday, May 21, 2004
Devin got up pretty early this morning and is in a good mood. He is tired of staying indoors all the time so we took a little drive. We drove out west of Salt Lake and saw tons of new homes under construction. It is amazing at all of the building that has gone on out here since I first moved here eleven years ago. Lots of houses out there without a tree in sight.
Yesterday I took Kara to a birthday party for our neighbor. Devin was a little disappointed that he didn’t get to go, but knows that next year he isn’t going to miss anyone’s birthday parties. I think that is one of the hardest things for me about this cancer. I just love to watch my KIDS having fun…..and it seems like Devin is always coming up on the short end of the stick. I sat through the party and listened to the other moms talking about their ‘problems’ and am actually jealous of them. I wish I had problems like which dry cleaners to take my clothes to and who has beach towels on sale. This cancer sucks!! I am doing better about not thinking about it 24/7, but it is always forefront in my mind. It seems everything revolves around Devin’s chemo as well as his general well-being.
Today is Kara’s dress rehearsal. She woke up in a crazy mood. She is excited and nervous all rolled into one. I will pick her up early from school to get her ready. I’ll have to see if Devin wants to go and watch the girls dance. He hasn’t seen this new dance at all and I bet he would just love it. Today would actually be the day to go because the auditorium won’t be as crowded as it will be tomorrow night. We’ll see. He is saying NO, but I think he wants me to beg him to go. He is funny.
Devin was excited to get two HUGE packages in the mail from his friends at the Tumbleweed Foundation. Lots of cool stuff…the best being an actual letter from a dog!! He is excited to write “Gracie” back. None of us have ever received a letter from a dog before so it was a big deal. Thanks Tumbleweed for having Devin as one of your featured kids this month. Check out their site: www.tumbleweedfoundation.org Lots of cutie kids featured this month.
I’m glad to say Devin is feeling pretty good today. We all have colds and sore throats, but they seem to not be getting worse so that is good. Its rainy here today so we are inside. I guess now I have a good excuse for not getting any yard work done today. I was hoping to impress Randy when he got home by getting the rest of the planters done, but instead I got nothing done in the yard. Oh well, maybe next time he leaves I’ll get something done.
Thanks for stopping by to check on Mr. Devin. He appreciates your messages so leave him one and let him know you were here. Hope you all have a great weekend and I’ll update again when I get a chance. Thanks
Thursday, May 20, 2004
Devin had another good day yesterday. He was feeling better and looking more ‘pink’. He has been so pale and sickly looking that it is good to see him looking more like a normal kid. He is pretty bruised up from his bike wrecks.
We went up to see Kara’s spring program yesterday afternoon. Devin was really impressed with the show. He went up to Kara and told her she did an excellent job. He is such a nice brother. He had a good time talking to Miss Peggy and Miss Linda. He was telling them about his upcoming trip to the Grand Canyon. I think everyone he told is as excited as he is about the trip.
Mr. D. came over yesterday to talk to us. He had talked to the principal and it was decided that Devin DID NOT need to take the test that was brought over last week. That was good news. Devin is feeling good enough to do it, but it is supposed to be a measure of what the kids have learned this year…..I’ll almost bet there are no cancer related questions on the test.
Anyway, it is always good to see Mr. D. He is really nice and had us all drawing. He said you can tell a lot from kids’ (and adults) drawing. Evidently Devin’s drawings need some more color….expand your world. My drawings mean I am stressed..don’t know why. Kara’s drawings…well, I didn’t quite figure out what her drawings meant…maybe next time. Mr. D. thanks for coming by.
The kids were hungry after Mr. D. left. We decided to go over to Gardner Village and get something to eat. The kids usually eat pretty well over there. Sure enough, Devin ate all of the buffalo chicken from my salad. He really liked it. He is a tough kid. The chicken on the salad there is HOT. Just glad he enjoyed it. He talked about how good that chicken was all night last night. I’ll tell you, if he’ll eat it I’ll gladly go get him some more.
We walked around Gardner Village after we finished eating. It is so pretty this time of year. Lots of flowers; delphinium and iris are everywhere. We spent some time feeding the fish and the kids really liked that. The fish were hungry and were really getting aggressive and jumping up out of the water. Devin even spotted some type of muskrat-like animal swimming across the water. The fish were the entertainment for the evening though.
Kara wanted to go for a walk when we got home, but Devin was worn out from walking at Gardner Village. It doesn’t take too much to tire him out, but I know that will do nothing but improve as he gets stronger each day. He finished the last of the thioguanine on Tuesday so he is completely off of chemo for a few weeks for count recovery. It will be a nice break.
Devin is still having trouble sleeping so he is sleeping in again this morning. Hopefully he will wake up feeling even better than yesterday. Randy called last night from Kentucky and he is sick. Hopefully he will get to feeling better and be well by the time he comes home. We don’t need any germs around here, plus Kara’s got her big dance recital this weekend.
Thanks for stopping by to check on Devin. Please leave him a message and let him know you were thinking of him today. Also, he’s got many friends here on the caringbridge that would love a note of encouragement. Have a great day
Wednesday, May 19, 2004
Yesterday turned out to be a pretty good day. Devin woke up in a good mood and looking better than he had on Monday. About 1:30 he surprised me and asked for pancakes for breakfast. I told him he had missed breakfast, but he could have some for a late lunch.
The kid ate 3 small pancakes and was stuffed. This is the most food he has eaten in I don’t know when. I think now that he has started eating he may develop a trend. Before the day was over he had also eaten part of a pickle and a popsicle. Not much, but better than nothing.
He felt good enough to ride his bike yesterday evening. We walked down to the park we went to on Sunday. We found a house in the neighborhood east of us that is in foreclosure and is sitting empty. The kids have started calling it ‘grandma’s house ‘ and we stopped to look at it again. We are going to see if we can get some information about it today.
The kids were excited to see the ice cream man as we were leaving the park. He never comes down our street and the kids are convinced their dad pays the ice cream man to stay away. Both of the kids picked out popsicles and we started back home. Devin had another bike wreck on the way home and scraped up his leg pretty good. I told him if he would start eating every day his bike riding should improve.
Sam, Devin’s Make A Wish wish granter, called last night. She had some exciting plans for Devin in the works that she wanted to run by me. Anyway, next Wednesday is Delta Airlines 75th Anniversary and they are going to be taking a group of people on a special plane ride to the Grand Canyon and back to celebrate. Our family has been invited to attend and Devin is really excited…..Kara will be missing school, but she is excited to FINALLY be going somewhere, even if it is just for a few hours.
There is an airshow in June at Hill AFB that Sam said several of the wish kids will be attending. She knows how much Devin loves airplanes and wanted him to be able to attend. Devin said, “I’ll be there!”. He is really excited.
Last, but not least there is going to be a special air show in Wendover, Nevada (120 miles West of SLC) on September 17, 2004. (Anniversary of Devin’s diagnosis of CANCER) This organization wanted two wish children who are interested in airplanes/flying to go up and sit in the cockpit with the pilot and actually fly a plane. The planes are the T34 and T35. Sam wasn’t sure which plane Devin would get to fly, but honestly it just doesn’t matter. He is BEYOND EXCITED about the opportunity.
Devin is excited to get on the computer today and look up these two airplanes. He talked to Anita on the phone last night and talked and talked about these upcoming events. He absolutely loves airplanes and Anita got an earful. She said she was surprised he talked to her for so long, but I guess he had a lot to say. He was smiling from ear to ear when he finally crashed and went to sleep last night. I’m sure he will be online doing some airplane investigation when he wakes up today.
Thanks for stopping by and please leave Devin a note if you have a minute. He was excited to see that 2 of his school friends have left messages for him while they have been on vacation! One in Hawaii and the other at Disney….thanks guys!
Have a great day….off to get a little girl ready for school. Her class is doing their spring performance again today to be filmed. She is excited.
Tuesday, May 18, 2004
Well I guess the doctor’s office went pretty good. We were there until about 6:30 last night getting the kids checked out. The strep tests for both were negative and the doctor doesn’t think that it is Kara’s parotid that is inflamed, but another lymph node in her mouth…of course her mouth looked SO MUCH better when we got to the dr’s office.
I am glad they don’t have strep, but I am still worried about Kara. I looked at her mouth this morning and it looks good, but if it flares up again I am taking her IMMEDIATELY for some doctor to take a look at her. I don’t want this to happen again.
Both kids were up in the night. Devin was up coughing and Kara was up complaining of leg pain and a sore throat. It was a restless night here. Devin is still sleeping this morning. Hopefully he will look and sound better when he gets up. Kara got up in a good mood and we worked on her recital invitations before she left for school. She said she is feeling ‘FINE’. She does NOT want to be sick.
Kara is going to have a busy week this week so I hope she can stay feeling good. She brought home a note from her teachers yesterday that they will be doing their spring program AGAIN tomorrow for the corporate office to film. She is excited about that. Thursday night the kids (I’m sure Devin will not get to go) are invited to Harrison’s 6th birthday party at a place called Bouncin’ Off the Walls. Friday afternoon and evening is the dress rehearsal for the dance recital. Saturday evening is the official dance recital. This is a week she doesn’t want to miss so I hope she can stay feeling well.
I appreciate the phone calls and e-mails asking about the kids’. I wish I had some definite answers, but I guess that is why they call it ‘practicing medicine’. Thanks for stopping by to check on Devin. Please leave him a message and let him know you stopped. Also, if you have a minute please visit some of Devin’s caringbridge friends.
Have a great day.
Monday, May 17, 2004
Well today is a weird day, but then again it is Monday.
I looked at Kara’s throat last night and found out that her parotid is inflamed. This makes me scared as hell. When Devin’s first became inflamed I took him to the doctor and the dr. told me he had never seen anything like it before. He knew what it was, but had no idea why it was inflamed. Anyway, Devin’s presented on 4-14-03. The only reason I remember is because Devin is a Titantic fanatic. He and one of his little friends were supposed to go and see the Ghost of the Abyss on that date; which is the date the Titantic sunk.
Now I am scared. When I first told PCMC about Devin’s parotid being infected when he was first being diagnosed they said if Devin’s pediatrician would have called them they could have told him THEN….on 4-14-03, rather than 9-19-03 what the cause was………………which was Stage 3 Non Hodgkins T-cell Lymphoblastic Lymphoma. It is likely if he would have been diagnosed at that time he would have been a Stage 1 and be done with his chemo by now.
Anyway, Randy and I talked about this and the odds are definetly AGAINST this happening, but I am really nervous about it. Randy is a numbers guy and was spouting off statistics, but honestly it doesn’t make me feel any better. I have known something is NOT right for a couple of days with Kara and now to be confronted with this is too much. I know it has to be something simple…….I am hoping for strep.
Kara insists she is ok. She even went to school this morning. She wanted to go and I knew I couldn’t make her an appointment until after I got Devin’s labs back. I was thinking there was even a remote possibility that she could get swabbed for strep in the oncology clinic. I feel like a bad mom for sending her to school like this, but if its strep I’m sure that is where she got it and if not…well then she isn’t contagious.
I’ve always made stupid comments like WHY Devin? We haven’t treated this kid any different than Kara…now this. They eat the same foods and have been exposed to the same things so now I guess I should ask WHY NOT?
Devin’s labs are horrible. I knew they would be. I first got them from home health. Shortly after I got off the phone with home health I got a call from the nurse in clinic. She told me the criteria (always changing) for transfusions and Devin needs to get WORSE before they will transfuse.
She asked me about Devin’s well-being. I told him he was acting like he had a sore throat, but his cheeks are so swollen inside that I cannot see his throat. He has a slight cough and has been sneezing.
I told her about Kara’s situation and her response was Kara needs to be swabbed TODAY…and you might as well take Devin in too. He should be swabbed for possible strep. I told her I thought the clinic would need to see him for that. NO…..he needs a regular pediatrician..take him where Kara goes. So I repeat to her that I am supposed to be taking a neutropenic child who is on chemotherapy to a doctor he has NEVER seen to be swabbed for strep. Yep…that’s what I am supposed to do. She said she is trying to make it “easier” on me…..I told her I didn’t think that would make it easier on me, just on the clinic there.
I am always amazed after talking to this nurse. She always seems to have the best interest of the clinic in the back of her mind. Maybe I am crazy, but it seems like a child who is on chemo, is neutopenic, has a history of severe allergic reactions as well as history of high blood pressure should be seen by someone who has seen him before and KNOWS his history??? What do you think?? Am I the only one this makes sense to?? I mean its hard enough going into clinic and being seen by a doctor who has never seen Devin before, but at least the dr. at the clinic has access to his medical file.
Anyway, I’ve got appointments for the kiddos at Dr. Valentine’s office at 4:30 this afternoon. Kara has been to him twice and we were impressed by his thoroughness. He has come highly recommended and understands my distrust of brushing things off. I talked to his nurse and she was surprised to hear that PCMC was sending them a neutropenic child on treatment, but is willing to see Devin. She said they would get a room sterilized for him and get him into it as soon as we arrive.
So far Devin is chilling, but no fever. He is still not eating or drinking enough. I know these last meds can be hard on his kidneys and his liver so that makes me nervous. Hopefully he will think of something that sounds good to eat soon.
Wish us luck today. I am feeling a bit overwhelmed with the thought of something being wrong with my innocent baby girl. We appreciate your thoughts and prayers. I will update tonight after we get home from the doctor.
Sunday, May 16, 2004
Randy has been working on sprinklers ALL day. He is trying to get everything in good shape before he leaves for Kentucky tomorrow. This is his first trip in what seems like forever, but I guess in about 8 months. He used to travel frequently, but ever since Devin was diagnosed he has stayed in town.
Mom and I took the kids to a different park this morning. Devin rode his bike and Kara rode her scooter. It was a nice little walk from our house. The kids found Grandma a house to buy while we were walking. It was empty so we peeked inside the windows and yard. It would be neat to have Grandma so close after all of this mess is over. I know someday she will be headed home and the kids are going to miss her like crazy.
By the time we got home from our walk mom was pushing Dev’s bike and I was pushing the scooter. The kids were both worn out. Something is not right with Kara. She has been a little more clingy this weekend and not exactly herself. She is talking like she has a sore throat, but insists she is fine.
In the afternoon mom and I ran over to the mall to pick up a few things for Randy’s trip. He didn’t like most of what I picked….which is a first, so Randy and I went to a different mall and got him some other shirts and new shoes. He is excited about his trip. He loves going to Kentucky. He has a lot of friends there so he always has a good time.
Devin is not eating this weekend at all. He takes a bite of something and that is it. His urine is too dark too, but he seems to be drinking ok. Russ comes out in the morning for labs. We will see then if he is eligible for blood. His color is very pale so we’ll have to watch and wait.
We went over tonight to show Randy’s parents the car. While we were at their house we started talking about Devin liking MAD magazine. Randy’s mom found the MAD game that used to be Randy’s. She let Devin bring it home. He was thrilled. He just can’t get over that MAD magazine has been around so long. He is funny.
Thanks for stopping by to check on Devin. Please sign his guestbook and let him know you stopped by to check on him.
Saturday, May 15, 2004
Today is a good day. Russ came over and did Devin’s LAST ARA-C chemo today. Devin was so excited!! We just have a few more days of thioguanine left, then count recovery and onto maintenance. Russ was glad to see Devin in such high spirits. Me too. It is good to see him smiling and having a good time.
Randy was washing his truck while Russ was here. Russ asked Devin if he would wash his windshield. Devin did…actually he would have washed his whole car if Russ would have let him, but Russ surprised Devin and gave him $5.00. Devin was really happy and now he thinks he wants to start washing Russ’ car everytime he comes over.
I woke up this morning and realized that today is Aryn’s birthday and we don’t have her package in the mail yet. I’ll have to get it in the mail to her this week. Sorry Aryn. I guess I have too much going on right now. We are thinking of you and hoping you have a fun party and a great day.
The kids have really enjoyed driving around in the new car. Devin wants me to drive FAST, but I really don’t need any more tickets. It is a really nice car. It seems to sit up a little higher than my ‘old’ car, but I like it. I haven’t seen another one on the street yet. They just came out in ’03 so maybe I won’t anytime soon.
Randy and I stopped over at Ann’s house on our way to return our long overdue movies. Randy got the official tour of the new house and I took Ann, Nicholas and Ryan on a drive. We took the movies up to Hollywood and saw Jeremy. He liked the car. I’m glad he works there so he can take care of my mountain of overdue movie fees. Thanks Jeremy!
Kids wanted to stay with Grandma while Randy and I went out driving. Neither one of them has felt all that great today. No complaining or fevers, just not themselves. We’ll have to see what happens. Devin’s counts should be just about horrible right now. I hope they aren’t getting sick.
Thanks for stopping by. Hope you are having a great weekend.
Friday, May 14, 2004
We took Devin over to look at the car this afternoon. He really liked it. It looks a lot like the car I have been driving, but that’s what I like. It is really safe. Has front and side air bags along with air curtains to protect the kiddos in the back.
Devin was glad to get out of the house for a while. He doesn’t get out much so its fun to see him having a good time. He was tired when we got home. He said he wanted to ride his bike, but I knew he was too worn out to do it. I told him to wait until after Kara came in from dancing and they could bike together. He forgot about it by that time. He was just worn out from looking at the car.
UPDATE:
Randy came home and said he bought the car. We have to take the check over to the dealership and pick it up. I feel kindof sick about it. I am really attached to my old car and now I have to worry about keeping this one “looking new” and pristine. We will go pick it up in awhile. I’m going to go and buy Kara a new car seat for the new car; one of the booster seats without a back. Devin is big enough now that he doesn’t have to use one….I’ll hold on to his just in case. I know his major ‘growth’ was from steroids. He normally still weighs under the limit for car seats.
Friday, May 14, 2004
Devin is sleeping in again today. He has been having lots of trouble getting to sleep at night so he lands up sleeping in on most days. I talked to his dr. about it on Wednesday and he gave me the name of another dr. for Devin to talk to…now to get ahold of this dr.
Yesterday was another uneventful day. Devin’s energy level is still really low so he has still not been on his bike since his crash last Friday night. He basically just draws, reads and plays on the computer. He has been drawing up a special machine that can go on land, water and in the air……basically indestructible.
He still isn’t eating, but he’s also not throwing up. I guess he knows when he can and when he can’t eat. Randy picked up Famous Dave’s for dinner last night, but Devin just ate fries. Just no appetite.
Nanny got out of the hospital yesterday. She had a fever and a really swollen arm that they weren’t sure what was wrong with, but they let her go home. I guess she told them she wanted to go home and the hospital didn’t want to argue with an 88 year old woman. I hope she is doing better and feels safe again to be at home. The dr. changed her meds while she was in the hospital this time, so hopefully she will start doing better.
Randy, Kara and I went to look at cars again last night. Devin wanted to stay home and watch Survivor with Grandma. She said he chattered the entire time we were gone. He seems to get VERY chatty at night, then starts bouncing off the walls. About the time everyone else is getting ready for bed Devin is getting his energy.
He gets VERY silly and giddy and is just funny to be around. I’m sure it’s the drugs he is on because it seems like he is on some type of high. Wish it came earlier in the day, but we enjoy the giggly Devin when we can. He just seems more like his old self when he is laughing and joking around. Hopefully soon he will be in a good mood all the time.
We are so proud of Devin with the way he is handling this round of chemo. Last time he got these drugs he was sick all day. So far he has just thrown up the once and seems to feel pretty good. Russ was out yesterday afternoon with the ARA-C and will be out today, then tomorrow. Labs are due to be drawn at least every Monday until his counts are up enough to begin maintenance. Sounds like things will be getting easier around here very soon.
Thanks for stopping by to check on Devin. He enjoys checking his guestbook and e-mail while he’s on the internet shopping for more musical equipment to start his own band, as well as his own airplane. (He’ll need a way to fly his band around for the concerts). What can I say, the kid has BIG PLANS. Anyway, let him know you were here. Also, if you get a chance, sign some of his friends’ guestbooks. These kids really appreciate the messages.
Have a great day.
Thursday, May 13, 2004
Good morning.
Devin is still sleeping this morning. He slept almost the entire time we were at the hospital yesterday. He has to be pre-medicated for the blood so they kept him asleep with the benadryl and tylenol combo. He woke up just before the last unit finished and was ready to go.
He never did eat much at all yesterday. I think he ate a candy bar late last night, but no food. He just hasn't been hungry at all. I guess he will eat when he gets ready.
We got home in time to eat some dinner and take Kara to her spring program. Lucky for us that grandma had dinner waiting for us when we got home.
Grandma stayed with Devin while we went to the performance. His counts were so low and his mood was so BAD that we figured he should not go. I figured he would have felt better after getting 2 units of blood, but I was wrong. He had a headache from the spinal so he was better off staying at home.
Randy changed his dressing last night and said it looked just great. We are back to changing it just twice a week now so his skin around the bandage is looking better too. He was really sore from the frequent dressing changes. Taking the covaderm off so often really makes his skin sore and sensitive.
Hopefully Devin will wake up here pretty soon and be in a better mood. Usually after getting tanked up on blood he feels like a different kid. Russ will be out later this afternoon with the ARA-C. Devin will get three more days of that then wait for counts to come up to start the maintenance.
The doctor said that they will expect Devin's counts to drop even more this next week so we will definetly be staying home and away from germs. His WBC is basically not there so his ability to fight off anything is non existent.
Thanks for stopping by to check on Devin. He appreciates the nice messages you leave. Please keep Devin and the other caringbridge kids in your thoughts and prayers.
Wednesday, May 12, 2004
Hello from PCMC.
We came in for Devin's 10am appointment and had a CBC done. Devin's counts have dropped a lot. His platelets are still ok, but his hematocrit is only 22. They drew up a clot tube and sent us down to the RTU for the LP.
LP went smooth. Devin was a little harder to wake up this time, but everything went well. They gave him some fluids before leaving the RTU and sent us back to the clinic.
The blood bank is conducting an audit today so Devin was the lucky kid to be involved. He is always a little tricky getting blood....has to have it washed, then be premedicated...so lots of questions for the nurse to answer. Right now they are running the blood slow and he is sound asleep.
The official bone marrow aspirate test is back....nothing...NOTHING...clean bone marrow. This is great news.
I was reading Devin's road maps last night and discovered his maintenance will last longer than we were expecting. We had thought he would have one round of maintenance and be completely finished with treatment in early September. This is not the case. He will stay on maintenance until September 19, 2005....exactly 2 years from the day he started induction therapy. This was disappointing to say the least.
Anyway, maintenance is going to be alot easier. He will have the vincristine just once a month, rather than once a week...so that will be better.
He will be taking a bunch of pills, steroids and chemo pills, but in lower doses. When he gets his counts up he will be able to go back to school. Hopefully within the next six months he will be back at least for part days. He has really missed seeing his friends and doing normal things.
Hopefully we will be out of here by 5pm or so. Kara's performance is tonight so we need to get home before it is time for that.
Thanks for stopping by to check on Devin. Please keep him and the other caring bridge kids in your thoughts and prayers.
Tuesday night 5-11-04
Devin had a pretty good day today. We had wierd weather so we just stayed inside most of the day. Devin has been practicing his guitar LOUD today....thats the only way he knows!
We took him to the library this afternoon. He has discovered MAD magazines so he checked out some more of those as well as several books on airplanes and one book on guitars. He loves to read and I'm glad because reading has definetly helped him pass the time.
Mr. D. came over to visit with Devin this afternoon. He really enjoys playing games and talking to him. Mr. D. told me about a bad dream Devin has been having...so now we think we know why he is having such a hard time getting to sleep at night. I'm going to talk to the dr. about getting him something...he has been restless at bedtime for months now. Its really hard to get him to fall asleep and he is TIRED..fighting sleep.
He hasn't eaten much today so I have had a hard time getting him to take all of his meds. I've been making him take the chemo pill first to make sure he gets it in his system. The rest of the drugs he is taking now are pretty much preventative maintenance types of drugs: Prevacid, Diflucan, Septra and the Thioguanine.
Tonight he is watching his tape from when he met Aerosmith. It is so cool that not only does he have all the great pictures, but a video as well. What a cool experience. Steven Tyler and the rest of the guys were SO NICE to Devin (and our family). It was such a great experience. Wish we could do it AGAIN!!
Tomorrow is a big day. Devin has to be in clinic at 10am, then down to RTU at 11:30. We're hoping to get the official GOOD report on his bone marrow aspirate in clinic. He will get the LP, then the cytoxan and ARA-C. So far he has done so well with these drugs. The first phase he had them in he was so, so sick. This is a big improvement.
Tomorrow night is Kara's spring program at school. Devin is hoping he feels good so he can go. She told me tonight that she is a 'little nervous' about the performance, but I know she will do just great. Oh, and Kara came home with the Student of the Day award today. She LOVES being student of the day. Student of the day is the helper and the leader for the day; she loves that. She's a sweet girl.
As usual, I have a request to keep all the caring bridge kids and their families in your prayers. I'll update tomorrow. Thanks for stopping by and please sign Devin's guestbook and let him know you were here.
Tuesday, May 11, 2004
Good morning.
Devin is up and feeling well. He has been practicing his guitar and acting more like his old self. He hasn't eaten yet, but hopefully he will think of something that sounds good pretty soon...I'm getting hungry too.
Tomorrow is another big day. I guess its time. Usually about the time he starts feeling 'good' we realize its time for more chemo. Its amazing how much better he has done with this round of treatment. The doctors had indicated that since he has such a small tumor now that they were expecting him to tolerate the drugs better...luckily that has been the case.
Tomorrow will be another LP (methotrexate), cytoxan (1 hour), then the ARA-C (push). This is exactly the same as he had last week, just without the bone marrow aspirate. Hopefully the tomorrow the dr. will have the official percentage on Devin's bone marrow. Last week the initial impression was good....thats all that was said, so I am assuming it is lower that the 17%, which is what he was originally had (9-19-03).
I am so glad to be so close to maintenance. I just can't help but think that things are going to be getting better and easier each day. He is still pale and looks sick, but to hear him laugh and joke around is music to my ears. It seems like so much of the winter was spent with him feeling so horrible that we didn't hear a lot of laughter in our house. It is good to see the 'old'...meaning all of eight years old, Devin shining through.
I've missed him. I know for sure that this cancer has made him a stronger person, but I also know he has been made to grow up way too fast...as have the other kids suffering with this disease. Kids should be out playing and having fun...not fighting for their lives.
Devin told me awhile back what he had learned from cancer.......He told me he had learned patience....he had learned to wait and wait and wonder what was going to happen next. I know he worries more than he should...we try to lead him a sheltered life, but the truth is he is smart and knows full well what is going on. I believe he will come out of this a better person and he was pretty great to begin with....I love you Devin. You make us proud everyday.
Hope you have a super day. Please remember all of the caring bridge kids in your thoughts and prayers. We are all in this together and any and all of these kids could use a little extra support.......Thanks.
Monday evening 5-10-04
Devin started feeling better this afternoon. He told me he wanted spaghetti for dinner so I told him we would have to make a quick trip to the store. He was able to look around in the store without feeling nauseaus and also pick up his mail at the post office box. He was excited because he got two packages today.
He worked on some of his school work and also wrote out some thank you notes for the many things he has got over the past week. He has received many letters, cards and packages from all over thanks to the Make A Child Smile website. Many of the packages are from different elementary school classes. He loves getting the mail and sending notes back to the kids.
At home in our mailbox he FINALLY got an envelope from EMERIL. It was a signed picture (5x7) of Emeril…said Devin, BAM, Emeril. Devin was sad to see that Emeril hadn’t responded to any of his questions…not even a form letter. I had just been explaining to Devin how to write a good letter, so he was a little disappointed to not get a letter after waiting for 6 ½ months. I guess Emeril is a busy, busy guy.
This afternoon his teacher was supposed to come over for lessons between 3:30 and 4:00. At 5:00 we finally gave up on her and sure enough she showed up….with pink eye! She asked if it was ok to teach Devin today and I told her NO. Pink eye is very contagious and the last time our family had contact with it we had it for six weeks. Not something I want to deal with again.
The teacher left me with an end of year test to give Devin. It is supposed to be given over several hours and I’m not quite sure when we will get it done. Yes, we are home most of the time…more than most of the time actually, but his endurance really isn’t there. We will get it done, but I’m hoping we don’t all get pink eye from touching the papers.
Before she left she told me that the kids in Devin’s class were tired of coming to Devin’s site and having the guestbook take so long to come up. I told her I would work on it. I am only one person so it might take me a while to figure it out. It would have been nice if she had ANYTHING at all nice to say today, but hopefully she reserved that for the kids that are lucky enough to be taught IN HER CLASSROOM…NOT STUCK HOME DAY AFTER DAY WITH THEIR MOTHER UNABLE TO GO TO SCHOOL BECAUSE THEY ARE FIGHTING CANCER.
No I don’t expect a lot. I just would like my child to be treated as though he matters. I wonder if she understands how frustrating it is for Devin to anticipate something is going to happen only to be let down. Devin is so confined to this house and away from the general population that he looks forward to having her come over to teach. He feels isolated and alone and feels rejected when he is treated this way. Cancer sucks enough without the total lack of support we are feeling right now. I know brighter days are ahead, but today is crappy.
Bad news coming in from Oklahoma this evening. First impression was Nanny had another heart attack. She is now in ICU and the enzyme tests aren’t back, but now they are thinking she has some type of infection in her chest (it is very sore), plus her “sundowners syndrome” appears to be more involved. She still is convinced that people have been breaking into her home and stealing everything she has stashed in her basement…this has been going on for awhile now. She is in ICU now and after they figure out what the problems are she will be moving into a nursing home at least for a while. My mom is not quite sure what she is going to do. Depends on the diagnosis I guess. She may be flying back to Oklahoma to help out this week. Watch and wait.
If you have something nice to say…maybe a word of encouragement or a smiley face please leave it in Devin’s guestbook. I am trying my best to get this thing fixed so no one has to deal with the disappointment of waiting for it to come up. I know how frustrating it must be to have to wait for so long for this thing to come up and I’ll apologize right now for putting so many people out. Sorry.
Monday, May 10, 2004
Good morning.
Devin has slept in today. He is telling me that he doesn't feel good and he is freezing. He doesn't have a fever, but still looks awful.
He is really pale and says he feels like he might throw up. Sounds like another Monday. I hate cancer. It is such a mean disease.
On a brighter note, when we get through this delayed intensification phase things should settle down. The next schedule looks SO MUCH easier than the previous ones. I am really looking forward to Devin feeling good.
I'm going to see if I can get some of these pills in his system and get him to feeling better. He has been pretty down the past few days. I know he must feel awful and I feel awful for him. Cancer is no fun.
Thanks for checking on Devin. Hope you all had a great Mothers Day.
Mothers Day 2004
Today was a good day. Devin and Kara both woke up in very good moods. Kara first presented me with a pine cone that she had hidden away just for me. She was really proud of it. I am still trying to find the perfect place to put it…I’m thinking of putting it on the shelf of the grandfather clock my mom got me for Mothers Day.
They had each picked me out a shirt, a new gown and some plants for the pots outside. Kara had brought home her story she had written for the Young Author assignment at school, as well as a book she made me on the planets, a refrigerator magnet and a card. The school really makes sure the mothers are taken care of on Mothers Day. I think Devin was a little disappointed that he hadn’t made me anything, but I told him it was all ok. Next year he will be back in school doing all of the things the other kids are doing AND most importantly, feeling like doing ‘normal’ things.
We decided to pack up a picnic and go somewhere. We landed up driving north of Salt Lake out to Antelope Island. It is in the middle of the Great Salt Lake. We had never been there before so it was neat looking around out there. We did see some buffalo, but no antelope. We saw lots of sea gulls. They are aggressive birds. As soon as we started eating they showed up to beg for food. The kids really enjoyed feeding the birds…from a distance.
The island was pretty quiet when we first got there but busy by the time we left. There are some nice sandy beaches to walk in, but it’s a long way to the water. Randy found a pull off on the side of the road where Kara could get close to the water. It is pretty stinky stuff. Lots of little flies buzzing around on the algae in the water. No fish in this lake, just brine shrimp.
The kids both liked stopping at the ranch on the island. It has an old home, bunkhouse and buildings that you can walk around and look at. The kids even found some buffalo fur on some branches pretty close to the house. The only buffalo we saw up close were pretty close to the houses.
All in all it was a good day. We had a cookout after we got home then Randy wanted to go over and see his mom for Mothers Day. I always leave their house feeling like crap. Randy’s mom informed me that they had celebrated Mother’s Day with “their family” yesterday…with her parents and her daughter and her family. Had a “family” dinner…guess we didn’t qualify as family once again. I am so glad my mom is here to keep me from going crazy. I just felt so awful after finding out ONCE AGAIN that I mean NOTHING to Randy’s family. I still never understand HOW or WHY I let myself get talked into going over there to find out how little I mean to these people.
If my mother wasn’t here during all of Devin’s treatments there is just no telling where Kara would have landed up. I am so thankful that my mom has basically put her own life on hold to help us out. Most of our offers of helping out ended long ago so it is good to have someone I can count on. I would hate to have to wonder where or what Kara was doing during all this hell we have gone through with Devin. My mind doesn’t need that worry too.
Hope everyone had a great Mother’s Day.
Saturday, May 8, 2004
Devin woke up in not such a great mood. He threw up and acted agitated most of the day. Randy took the kids to the lumber yard to get some more flowers. The kids picked out a couple of lilies to put in one of our front flower beds. We are trying to get it full of perennials so the lilies should just about fill it up.
We took Devin out for Mexican food for lunch. This kid has absolutely NO appetite so it was pretty much a waste of time and money. I guess he knows best when he shouldn’t be eating.
Kara had her dancing pictures this afternoon. Grandma fixed her makeup and she just looked so grown up. We just got her costume last night so I spent this morning tacking down the ribbons on the tutu. It is a really pretty raspberry color. Looks really good on her.
Russ was over at 3:30 for the last of this round of ARA-C shots. He was trying to joke around with Devin, but Devin is NOT in the joking mood. He never did tell Russ what he got me for Mothers Day. He pretty much acts like he is mad at the world. All of these meds make him feel sick most of the time.
Devin didn’t ask to ride his bike today. He said it is too hot outside and too cold inside so we decided to take him for a drive. We landed up going to RC Willey and looking at furniture. We have been talking about getting a new entertainment center, but didn’t really see one we could live without. There is one I would really like to get over at Vintage Oak so possibly we can get RC Willey to order it for us.
Devin acted like he enjoyed getting out and seeing our buddy Shane. Shane is always really nice to the kids and they like to tease him that he was on the Kiki movie. Luckily, Shane hasn’t seen the movie…it is animated and I’m sure he wouldn’t like being referred to as a cartoon character. The kids found a neat coffee table as we were leaving the store. It opens up so you can put lots of junk inside. We’ll get it today and load it full of the kids art supplies. They have tons of markers and papers so this will be a good place to hide them.
By the time we got home Devin was in better spirits. We went by Papa Murphys and got a take and bake pizza….Dev’s request. He ate a little, but not an entire piece. Before cancer this kid could really put away the pizza. Hopefully someday soon he will be feeling more like his old self.
Thanks for stopping by to check on Devin. Have a Happy Mothers Day tomorrow.
Friday, May 07, 2004
Another good day today. Devin has been feeling a little sick, but it really hasn’t slowed him down much. He tried to go to the grocery store with me this morning, but he said the smell was too much for him. We did get his mail from the post office. He’s still getting cards from the MACs site. What a nice group of people we have met. He has enjoyed the mail and marking his map with the pins.
Randy went this morning and had his somnoplasty re-done. It went well and hopefully now he will stop snoring again soon. He had it done when Kara was still in the baby seat so I guess it has worked pretty well. I was surprised when he said the dr. decided not to charge him. Randy is a little sore, but that should be a thing of the past tomorrow.
Devin got a package from his friend Mr. D. this morning. Movie tickets and candy; it was a nice surprise for him. Devin has been wanting to go see the Scooby Doo 2 movie so maybe we can go one day next week when the theatre is empty. His counts are on the decline so he really needs to be careful.
Dev’s friend Nicholas came over to ride bikes for a little while before Devin got his chemo today. They rode over to the school and Devin did pretty well keeping up. Devin wanted to ride some more tonight, but I guess he was pushing it because he had a pretty bad wreck. He really scraped himself up good this time. We were a couple of blocks from home so Grandma pushed the bike home while Devin hobbled home. He is pretty sore tonight, but I’ll bet he’ll be wanting to go out again tomorrow.
Devin isn’t eating now. He has eaten a couple of bites of soup all day. I guess he knows when he can and when he can’t eat so I don’t really push him. He is drinking good so hopefully that will keep him up and running. It always amazes me how little it really takes to keep him moving.
Margie brought over a flier about an air show that is coming up. He is really looking forward to going to that. It is advertising that they will have ultra lights there so he is really interested in those. Thanks Margie.
Happy Mothers Day a little early to all my friends reading the caring bridge sites. I’ve met some great kids and MOMS on this site. Hope you all have a GREAT Mother’s Day Weekend and get all the hugs you can handle.
Thanks for stopping by to check on Devin. He enjoys reading his messages so please drop him a line and let him know you are thinking of him
Thursday, May 6, 2004
I can't believe how well Devin has done today. He said he felt nauseaus most of the day, but so far has not been sick. I'm so happy for him. It seems once he ever starts throwing up he starts refusing to eat...so all is good.
He was out for a little while tonight riding his bike. He tires easily, but does enjoy it while it lasts. Everyone who sees his bike is really impressed with it. His doctor told him he wanted a picture of Devin on his new bike to hang up on the bulletin board. We'll have to remember to take one to clinic next week.
Tonight mom and I went out Mothers Day shopping. We made some real progress at the mall. We managed NOT to buy anything for Kara; which is close to impossible. I just kept telling myself that she doesn't need clothes. We got Devin a really cute outfit at the Gap. I keep forgetting that we need to turn in a receipt for an outfit for the clothes that got ruined in the chemo disaster a while back. I'll have to remember to get that turned in too. Devin doesn't need anything either, but I couldn't resist.
Today turned out so much better than I could have hoped. I'm keeping my fingers crossed that the nausea stays away and he continues to feel well.
Thanks for stopping by to check on Devin. He loves checking his messages so please drop him a line so he'll know you stopped.
Thursday, May 6, 2004
Hello
We've had an uneventful day here, but uneventful is good. Devin slept in late this morning. He has been draggy all day and says he is nauseaus, but no throwing up. The anzimet is really doing its job. Thank God for the people who created all these drugs. Hopefully someday there will be a simple vaccine to keep everyone from experiencing the life-altering effects of cancer.
Devin is still smiling and happy from his good visit to the hospital yesterday. Russ came out and did the ARA-C this afternoon and left Devin with a couple of new jokes. It was pretty funny, Russ asked Devin what he was getting me for Mother's Day and Devin said he wasn't going to tell him.........because he didn't TRUST him!!! What??? Russ said, well you better trust me, I'm giving you chemo right now. Oh, Devin said, I trust you with chemo, just not with my Mother's Day secret. It was pretty funny.
Tonight we need to practice Kara's dance. Tomorrow is dancing in the afternoon. They only have a couple more regular dance classes before recital practice starts. Hopefully Devin will stay well as his counts go down so we can get all of our dancing stuff done: pictures are soon, then practices and the big day!! Devin has ALWAYS loved to watch the girls dance so I'm hoping he is feeling good by recital time.
Thanks for stopping by to check on Mr. Devin. I'm so happy to report he is still smiling and feeling as good as one can with all this chemo dragging him down. He's been online a lot of the day looking up everything from guitars to vending machines. I've checked on a few kids today and as always they can use some extra cheering up:
www.caringbridge.com/ca/christophersfight
www.caringbridge.com/al/courtneyhuff
One of these days I will get a pull down menu with all of our friends listed......one of these days!!
Thanks again for stopping and do us a favor and sign the guestbook. This is our big entertainment around here!!!
Wednesday, May 05, 2004
Cinco de Mayo!!
Today’s trip to the hospital went better than I could have hoped. The clinic was packed, but we got a room pretty quickly and Devin’s CBC was drawn. While we were waiting for the results Devin’s main dr. came in to take a look at his broviac. It looked so much better when I uncovered it this morning. Yesterday it had quite a bit of drainage, but today is clean. The dr. said all of the cultures were negative, but to go ahead and finish the course of augmentin Dev had started Saturday night.
The doctor was VERY attentive. He stayed and talked quite a bit with Devin today. Devin likes it when the doctor makes the time for him and treats him like a person. ( I do too) The doctor told Dev what a great job he was doing. He also told him that he is really strong and being tough on this cancer. Devin was surprised when Dr. L. told him he was on the toughest chemo protocol of any kid in the hospital. Those words of encouragement really made Devin feel good.
The RTU went very smooth. We had a different anesthesiologist this time, but she was very nice. All the other RTU people were the regulars…all very nice. Devin’s nurse told him that they had his poem hanging up in the RTU. He was surprised that they had seen it too. He had nothing but positive experiences today. He woke up from the anesthesia and he was so funny. He was trying to talk the nurse into letting him take some of the ‘go to sleep’ medicine with him. He wanted some for his line so he could use it at home when he ‘needed’ it. He had everyone laughing while he was waking up; he was very chatty and seemed to have an opinion on anything and everything.
He started telling the RTU people that he was going to be on the SOBE website so they looked it up and sure enough he was on it. It is under the Love Bus tour, then Salt Lake City. He then told everyone he was on the Aerosmith site so we spent some time looking up DEVIN on the web. Finally they had to kick him out to go back to clinic for the rest of his chemo. He loves playing on the internet.
Clinic went well. The dr. said the bone marrow they took looked VERY good. Devin had bone marrow aspirate as well as spinal today, so he has two bandages on his back. In the clinic he received his anzimet (line), then ARA-C, then the 1 hour cytoxan. He seemed fine with it all and talked the whole time. Devin has been very chatty today; normally he is more on the quiet side. It is good to see him feeling good. I keep thinking anytime the nausea will sneak up on him.
Tonight he wanted ‘his recipe’ of chicken carrot soup. I put chicken in the crock pot before we left this morning so we were able to come home to one of his favorite smells. So far he seems fine with smells. I’m hoping it will last. He’s eaten very little today. A bit of a smoothie, then a fudgsicle with his sister. He barely touched the soup, but maybe later he’ll try it again.
Today he started a new drug: Thioguanine. The side effects are basically the same as a lot of the chemo drugs: nausea, lack of appetite, etc. He will be on it for three weeks. Tomorrow, Friday and Saturday we have Russ scheduled to come out for the ARA-C. Hopefully Devin will continue to do well with it and keep feeling good.
Thanks so much for coming by to check on Devin. He looks and feels good. He enjoys reading his messages so please drop him a line. He LOVES reading his messages.
Tuesday, May 04, 2004
Today is a better day. We spent most of yesterday at the clinic. That place is exhausting! Devin’s site actually looked better yesterday than it had, but definetly not right. The nurse took cultures of both lines as well as a culture around the broviac site area. The site itself doesn’t look as puffy as it did, but still red and sore.
We actually saw Devin’s primary doctor yesterday…first in a long time. I discussed with the social worker my list of frustrations with Devin’s care. We are planning on a meeting Wednesday (tomorrow) when we are back in clinic. Hopefully we will get some issues resolved. I am so frustrated with everything that ‘isn’t happening’ that I could scream.
Yesterday Devin’s doctor decided that since Devin’s blood pressure was good in the clinic that we could stop taking it and go off of the norvasc. So, how do we tell WHEN to take the bp? Simple….if Devin looks like he is going to blow up, passes out or complains of a headache…we take it. Very reassuring. This really puts my mind at ease.
Devin’s counts are finally starting to come up. His platelets were ok yesterday, but if they drop at all he will be off the schedule for tomorrow. He has an appointment at 10:00 at the clinic. He will get his labs drawn again and the doctor wants to see the broviac site and know the 48 hour cultures are negative before starting any chemo. If he can hold these counts he will be in the second phase of delayed intensification.
I’m really nervous about this chemo. It made him so, so sick last time. I’ve enjoyed having him feeling good. It seems so mean to put him back on this stuff. I am hoping someday VERY soon a medical break through will be made that makes cancer and the pain it causes a thing of the past.
Devin is feeling better today. We made a trip to the guitar store so he could check out some more guitars. He was really having a good time checking out their stuff. We found one strat on sale for $100. I figured he would want to buy it, but we left emptyhanded. He still has all of his birthday money and a gift certificate to Amazon to spend.
Tonight we will try and tank Devin up for tomorrow’s big day. He is NPO tonight so nothing to eat or drink after midnight. Normally if we don’t tell him he CAN’T eat he does just fine. If he gets chemo tomorrow he will get an LP (methotrexate), ARA-C (push) and Cytoxan (1 hour IV). Quite a combination. They will give him anti-nausea (anzimet) in his line before they start.
Thanks for stopping by to check on Devin. He’s been giggling and acting more like himself today. We’re hoping everything will look good tomorrow and he can get back on track to get this chemo done!!
Monday, May 03, 2004
Well we set the alarm for 6am yesterday morning so we could do ANOTHER dressing change on Devin. The on call dr. had told us to look at it at 6am and re-evaluate. Since it was about the same we were able to stay home and avoid the ER. Plan was to re-check yesterday evening and see how it looked.
We spent the day outside enjoying the sunshine. We got a few more flowers and veggies planted and the kids played outside. Devin isn’t a bundle of energy, but he acted like he enjoyed being outside. He’s weak, but doesn’t complain. He is bruised up from trying to ride his bike. He looks like a posterchild for child abuse right now. Pale, sunken eyes and covered in scrapes and bruises.
About 8:30 last night we figured we had stalled long enough on checking out Devin’s dressing. Randy got the bandage off and had me come and look. It was not as dark as Saturday night, but the area surrounding the line itself is definetly bigger. It is more flat and not as puffy. We had been instructed to call the dr. back last night so we did.
The nicest thing I can say about that conversation was rude. The dr. acted as though I was begging to go to the ER. He commented that “if you want a trip to the ER and admission to the hospital I will be glad to do that for you”. Whatever. I don’t understand why worrying about your child is a damn crime. This line has been in Devin’s chest for 7 ½ months now and it has NEVER looked like this…..of course we are concerned. Just because it is the weekend doesn’t mean the need for medical advice should be put on hold. Seems to me that this hospital has some ridiculous motto of “The Child First and Always”. After my conversation with the dr. last night I was left to question that yet again. He asked us to draw a line around the area and see if it got bigger.
Today is depressing to put it mildly. We both know that Devin’s site is not right. Whether this doctor admits it or not, he knows it too. We were asked to call the clinic at 8:00 this morning. Finally about 8:30 I got through (phones were NOT busy, just NOT being answered). Devin has an appointment at 10am.
We are familiar with the drill. We will go in and cultures will be taken from both lines, then blood will be taken from his arm. He will scream his head off because this thing (site) hurts, not to mention taking blood out of his arm. He is tired of it. He is tired of not feeling good. Tired of not being able to do normal things…tired of his parents pretending they didn’t hear him when he asks when he is going to feel better so he can go back to school. I wish I had some answers for him, but the truth is I don’t know and my best guess is not anytime really soon.
I hate cancer. It is robbing my kids of their childhood and me of my sanity. A person can only take so much of the s*** that our hospital and clinic are so good at dishing out. Everytime we talk to a doctor we get some other “opinion” as to what it going on with Devin. None of them consistent. If that’s not enough to make you go insane I don’t know what is. Today I am pretty much at a point where I have had enough. Normally I am a very patient person, but I have had enough. Enough of the “I don’t give a crap about your kid attitude that seems to be so prevalent up there”. I cannot remember a month since Devin has been diagnosed that they haven’t ‘lost’ at least one child. I don’t know it that’s normal, but I do know I need my baby here with me. I’m sure there is another kid up there right this very minute that is more sick and needy than Devin, but that does NOT change the fact that he is sick and needs some help. Today he will get it…whether they want to do it or not.
I hate cancer. I hate it. I hate it. I read about these poor kids and the crap they are dealing with and all I can say is WHY??? Is this life? Is this what my child’s life will be for as far down the road as I can see? It’s not fair.
As you can see I am in a lovely mood this morning. I’ve got a bag packed just in case. Devin is still sleeping. I won’t wake him up until I just have to….he will not be thrilled to be going in….actually that is an understatement. He is going to be MAD AS HELL …and I completely understand. Poor kid. Seems like he should be doing something fun at 8 years old: maybe school and soccer. Hopefully someday soon.
Please keep Devin and the other caringbridge kids in your thoughts and prayers today. I hope something nice will happen today. I just can’t take any more crap today..and the day has just started.
Saturday, May 01, 2004
We went this morning and picked up some flowers to plant. We didn’t get everything we needed, but we got enough to get us started. The only snap dragons we found were too tall so we will keep looking for some smaller ones. Both of the kids love snapdragons.
Tonight we had Randy’s parents over for an early Mother’s Day dinner. We celebrated MD a little early with his mom anticipating that Devin will start chemo this week and not be able to be out and about next weekend. Before we sat down for dinner my mom started getting sick. No warning or anything. She is really sick tonight; throwing up, chills and headache. Hopefully it will be short lived and she will be back to her old self tomorrow.
I called Russ tonight to see what he thought she might have….he had called me the day after he took Devin’s labs to let me know he had strep throat. He said she might have food poisoning or some flu. I hope, hope, hope it is NOT food poisoning. Devin wanted ham sandwiches for lunch so that’s all any of us had to eat before Grandma got sick. Anyway, Grandma missed a good dinner. Randy grilled steaks and they were really good. Devin didn’t eat either. He hasn’t eaten much of anything today. Not really acting like he feels too good.
Tonight was dressing change night. Randy got Devin uncovered and hollered at me to take a look. It doesn’t look good. Devin’s site where the line comes out of his chest is red with what looks like pus coming out of it. It is sore to touch it. I took his temp and called on call. Temp 99.1 BP 88/64 low for Devin. (no bp med at all today)
We got a new dr on the phone. I told him what was going on and the fact that we had taken a picture of it while Devin was inpatient a couple of weeks ago – kindof a fluke. ( Randy was in the middle of changing the dressing when I remembered we didn’t have a picture of that thing. I thought that maybe SOMEDAY….a long time from now, maybe Devin would ask about it, so I took a picture ( we have digital, so no need to get it developed…just put it in my files for safekeeping)) Anyway, the dr. said to take a picture of it now and e-mail them to him. He was hoping to avoid a trip to the ER tonight.
Verdict: Watch Devin overnight. The dr. called in an rx for Augmentin. We are to uncover the site early in the morning and see how it looks and call him back. If it is worse or has something coming out of it we will go into emergency room. Watch and wait.
It was sunny and warm here today in Salt Lake. Perfect weather for just about anything. I’m hoping tomorrow is uneventful, but I’ll update when I get a chance. Please keep Devin and the other caring bridge families in your prayers. Also, if you get a chance Devin’s friend Courtney is having a birthday tomorrow. Please drop by her site and wish her a great day.
www.caringbridge.com/al/courtneyhuff
Also, Christopher could use a few extra prayers and well-wishes
www.caringbridge.org/ca/christophersfight
Also, just got word tonight that Devin is one of the cutie kids featured on the Tumbleweed Foundation site this month. Check it out: www.tumbleweedfoundation.org
Saturday, May 1, 2004
Happy May Day! I can remember getting the crap scared out of me when I was a kid trying to celebrate this holiday. The neighbor kids, my brother and I used to pick flowers (from other people’s yards) then wrap them in colored paper, ring the doorbell and run off. Anyway, I can remember one year we messed with the wrong lady. I think the real problem revolved around the fact that all of the flowers we were using for our May Day surprises were coming directly out of her gardens. She was not pleased and to make matters worse most we were all scared to death of her. I don’t think I ever admitted to my mom that I stole flowers from the Finleys so I guess this will serve as my confession.
It seems the May Day holiday gets a little more forgotten each year. I can remember my mom telling me elaborate stories of she and her sister being in May Day parades, dancing around the May Pole in dresses that matched their ribbons. Sounded like an ideal little girl holiday: flowers, fancy dresses and ribbons. I’ve relayed these stories to my kids because they like to hear the stories of when grandma was a little girl. We are lucky that grandma has a great memory and has a story for each occasion. Lucky us!!
No update yesterday. Between Devin’s blood pressure going sky high and my allergy eyes I just didn’t get much accomplished. We did talk Devin into going up to the school to hear Kara recite her poem. She did a good job. We were so proud of her. Devin was hoping she would want to come home early, but yesterday was Teddy Bear Picnic at her school, so no such luck. I was so glad he was able to get out of the house. The teachers are always so glad to see him and it certainly helps his self esteem to have so many people smiling because they are so happy he’s there.
I talked to the clinic yesterday only to find out that NONE of the things that I had discussed with the nurse earlier this week had been documented. I am beyond frustrated with that place. Once again, I got a differing opinion on what is causing the fluctuations. I’m tired of thinking about it so I won’t go into any details. Lucky for Devin his blood pressure finally settled down last night and is good this morning.
No big plans here today. I need to check on some kiddos and see how they are doing. We’ll probably try and get the rest of our garden and some flowers planted today. Its nice and sunny here so it should be a good day. Tomorrow is our friend Courtney’s birthday so please if you could, some birthday wishes would be appreciated.
www.caringbridge.com/al/courtneyhuff
As always, a quick message in these kids’ guestbooks is always appreciated. It only takes a moment to put a smile on someone’s face. Have a great day and thanks for checking on Dev.
Thursday, April 29, 2004
After we got Devin’s counts we decided to get out of the house for a while. Devin wanted to stop by and get his mail so we did. On our way to get the mail Dev spotted the SOBE Bus. They were handing out samples and stickers and such. Devin started talking to them about his favorite drinks, tatoos, etc. and they asked him if they could take his picture to put on their website. He told them he already had a website, but they explained that they wanted HIS picture on THEIR site. So he took off his mask and had his picture taken in front of the ‘Love Bus’. They gave him lots of temporary tatoos, stickers and 2 cool new t-shirts. He made quite the haul. They told him he would be on the site in about a week.
He got some neat things in the mail from the MACs site today. It seems hard to believe he has been on the site almost a month now. Time seems to be flying past us. Not getting much accomplished but we keep on trying. Kara even got a couple of really cute cards in the mail. She was beyond thrilled. Both of her cards were handmade and she just loved them. I was thinking to myself that maybe I should try making cards, but my mind just doesn’t seem to work very well anymore.
Maybe after this cancer stuff is behind us, or at least seems more settled I will get some type of hobby other than charting blood results. I have been accused of thinking of not much else other than cancer; to that I plead guilty! My question to those wondering why I’m not out being my normal self is simple: WOULDN’T YOU DO THE SAME THING FOR YOUR CHILD?? I would certainly hope so. We’ve got one chance to get this stuff done right and that’s it. There is no room for error. There are no trial runs. Walk in my shoes and see if your life doesn’t revolve around your child’s chemo calendar.
As we were leaving Randy called and asked Devin to meet him for lunch. It was about 1:30 so I figured we would be ok. We went to one of Dev’s favorites: Archilbalds. He loves their buffalo chicken there. He ate almost his entire lunch. It was funny we were all so proud of him for eating so well. His appetite hasn’t been so great since he’s been off of steroids so to see him eat most of a kiddie meal is a big deal. Funny how in our life before cancer we wouldn’t have given any thought to how much of his lunch he consumed. Now we are obsessed with each morsel that goes into his body.
After lunch we walked around Gardner Village. He wanted to go to the candy store where he picked out a treat. We looked around a little, but it was so chilly outside. The sun was out, but it was still cold. Too cold for much walking around, plus his stamina just isn’t there. No running around today. It was nice to get him out of the house though and he sure seemed to enjoy himself. He came home and was tired out and ready for his sister to come home. He checked the SOBE site and was disappointed that his picture wasn’t on there. (They told him it would be posted in about a week…I’ll post the link when it is there)
Tonight Grandma watched the cuties while Randy and I made a short trip to a school district meeting. It wasn’t as informative as we were anticipated so we talked to a few neighbors and headed OUT. We never go anywhere just the two of us without kids so we took an exciting trip to test drive cars. It was pretty fun pretending like we had a normal (cancer free) life for a couple of hours.
Tomorrow is the day we go and watch Kara get her award for the speech contest. She admitted to me tonight that she is nervous. She is afraid someone is going to laugh at her. I told her she will do just perfect. She is doing Devin’s poem and I told her if anyone laughs at that poem they need some serious mental help. I wasn’t joking. I’m so excited to go to school and see her. I’m hoping Devin will get up the nerve to go up there with us.
Well, I had every intention in the world of having a great report tonight. Devin has had a great day and we have absolutely NO complaints at all. I got online this evening to do a positive update and while checking my e-mail found out some bad news. My friend in Canada, Leslie, has a son who has had the same cancer as Devin. Christopher has had more than his share of encounters with cancer. Today he found out he has a mass in his stomach. I told Devin and all he could say was WHY? Please, please, please keep this boy in your prayers. If you have a moment I am sure his family would be grateful for some uplifting messages in his guestbook. As you can imagine this was a blow to them.
Christopher’s site: www.caringbridge.org/ca/christophersfight
Please keep Christopher and the other caring bridge families in your prayers. If you have a moment please sign some guestbooks.
Thursday, April 29, 2004
We woke up to snow this morning. No one wanted to get out of bed. Seems more like sleeping in type weather. Russ was out at 7:30 to do a CBC. About 9:30 HH called with the results. Better, but not great.
Dev has an artifically high WBC due to the nupogen. Its actually in the ‘normal’ range today. ANC is up as a result of nupogen as well. Platelets are coming up, but still not enough for chemo. He needs platelets of 75 for this round of chemo and he is at 62 so not too far off base.
The nurse from clinic called about 10:30 to give me the results. She said Dr. L. wants to have Devin’s labs re-done on Tuesday for possible chemo on Wednesday. “This would give Devin the best possible chance of seeing HIS PHYSICIAN, DR. L.” Great…we set up for Wednesday, May 5 at 10:00. He is due for cytoxan, ARA-C and an LP (methotrexate). Also, we will get the chest x-ray re-done and see if there is improvement there.
I know it is important to get Devin back on track, but I am not looking forward to these drugs. This is the combo that made him so sick. Throwing up from the time he was awake until he went to bed. Not something any of us are looking forward to starting. We will prepare for the worst and hope for the best. I have made a mental note of where every puke bucket in this house is stashed. I’m hoping things go smoother this time. Last time with these drugs was as close to living in hell as I’d like to be.
Looks like a lazy day here. This weather makes us want to stay inside where it is warm. Maybe Devin will let us watch something good today. We’ll see. Thanks for stopping by to check on Mr. Devin. Please drop him a message and let him know you’re thinking of him.
Wednesday, April 28, 2004
Devin had another nupogen shot at bedtime last night and also some more blood pressure medicine. His blood pressure was high last night, even after being down most of the day. This morning his blood pressure was in normal range.
I called the clinic this morning. After letting the phone ring 10 times I gave up and called again…same problem. No one is answering the phones in the oncology clinic. All morning I wait to hear from the nurse I spoke with yesterday.
About noon the nurse called me and asked what Devin’s pressures had been. I told her then she proceeded to tell me that Dr. L. was not happy that Dr. Y. had told us last week they would do further tests THIS week if counts weren’t up. She said that Dr. L wanted to wait until his counts had been bad for a month….HELLO…they HAVE been bad for a month now. Oh…….well, he wants to wait another week. I then told her that if Dr. L (main doctor) had ANY clue what was going on with Devin we would NOT be having this conversation. I told her that Dr. L hasn’t even seen Devin in clinic since he REFUSED to give him blood week before last and he landed up in the hospital. News to her.
Anyway, it was a polite conversation. No yelling or anything. I just told her how FRUSTRATED I am that the hospital and clinic rely on ME to get their records regarding my son, their patient, in order. She asked me if I would feel better if I brought Devin in tomorrow to do his labs in the clinic. Why, I am wondering, would I feel better to have these people draw his blood. They would have to ‘work him in’ so we would have to wait for a room. No thanks I told her that we would have home health come out and get the results before any of them were in the clinic. We will discuss Devin’s counts when she gets to work……ha.
Devin is totally lacking energy today. It has been a really lazy day. I got a few errands run while Devin and Grandma stayed home and watched movies. It was raining, then snowing today so we didn’t get to play outside at all. Seemed like a fall day rather than spring today. I fixed some chili and baked potatoes for dinner, but Devin has decided since he is off of steroids that he isn’t hungry anymore. Go figure.
Russ will be out bright and early to do labs on Devin. Hopefully I will get the results early so I can make plans for the week. If labs are where they need to be the clinic wants him in on Friday for all day’s worth of chemo. We just found out yesterday after school that Kara will be getting an award on Friday so we will have to plan around that. We are proud to do it.
Thanks for stopping by to check on Devin. He is hanging in there. Not great, but not bad either. Good by cancer standards, but in the world of ‘normal little boys’….not so good. This cancer stuff is getting old for him, but he is tough and he will get through it.
Tuesday, April 27, 2004
My mom got a phone call early this morning from her sister. Evidently my Nanny had a really bad night the night before and was very confused. Aunt Sue had been over there during the night and Nanny is ‘seeing things’ that aren’t real. Not good. Anyway, my mom was on and off the phone today with people in Oklahoma trying to get something settled for Nanny. Not sure that much of anything got done, but maybe got her settled down a bit. She has been having some severe confusion since she was in the hospital back in March. We are hoping it isn’t time to put her in a nursing home. That is something we have been putting off time and time again. She doesn’t want anyone living with her so the nursing home may be the only option. It’s a hard thing to face. My mom is really having a struggle with being so far from home right now.
Devin woke up about 9:30 this morning and seemed a little out of it. I checked his temperature; fine. His blood pressure however was a different story. Instead of the high readings we have come to expect it was VERY low. Scary low. Anyway, I rechecked him and called the clinic. The nurse told me to hold his AM dose (I had already figured that out), plus he had NOT had his evening dose due to low pressure at bedtime. Anyway, she said a DOCTOR would call me back.
All day it seemed like every time the phone would ring I would be disappointed. Finally at 3:15 a NURSE calls me. She tells me that Dr. L. has told her the high blood pressure was from the steroids and he was just coming into normal range now. I told her to tell him NO…it started being high on his 2nd high dose methotrexate back on January 16. It has been high and he has been being treated for high blood pressure since that time. His normal pressures are about 110/70 consistently, not 84/54. She told me it was because I had given him the bp medicine when he didn’t need it. I assured her that I had held the dose for the past 3 nights. She told me to “watch” his blood pressures and dose accordingly. I asked her what the NEW criteria would be for dosing..……….she forgot to ask!! She said she would talk to the dr. and call me back.
5:00pm she calls me back. She said that Dr. L. now remembers when Dev was put on the bp medicine and I am right…..imagine that. She says the dr. thinks his blood pressures are coming down because the methotrexate is FINALLY leaving his system (as well as the steroids). I tell her that I could understand that, but I still need to know the criteria to give the medicine. Again, she doesn’t know. She will call me back.
5:40pm again she calls me back. She said she could not get a hold of the original dr. (Devin’s dr) she had been talking to, but was able to talk to Dr. Y. He had given her the criteria of 120/80..to give if either number was at that level. I asked her why all of a sudden we are forced to wait AGAIN to get any information regarding Devin’s health and well-being. I explain to her that I had called this morning BECAUSE I WAS WORRIED, NOT BECAUSE I DID NOT HAVE OTHER THINGS TO DO!! She apologized and said she would ask the people taking the messages to make sure and get the nurses the messages. Whatever. Anyway, I also asked WHY Devin’s counts have NOT rebounded for a month. Dr. Y. had indicated last week that if Devin’s counts had not improved by Monday that some further investigation would be done.
The nurse proceeds to tell me that evidently the dr’s had a change of plans…no biggie. I tell her that this is MY SON’S LIFE they are talking about…if changes are going to happen with his treatment plan HIS PARENTS need to know. I told her that Randy and I were both VERY disappointed that no one seems to take Devin’s care seriously. Time and time again our personal journals and records have been used to “catch the clinic and hospital records up to date”. It is beyond ridiculous. She apologized up and down, but seriously it has happened so many times that I am just not buying into it.
I plan on talking to her in the morning. (She promised she would call me to check on Devin) Randy and I have decided that in order to get things done we are going to have to call another “care conference” and get nasty with these people.
On a better note we had a few surprises today. Our neighbors, Bryce, Catherine and Nicole stopped by with some ice cream and cones for the kids. Thanks guys. We found out our little neighbor Kiersten is a star! I was thumbing through a magazine I had picked up at the library and she was in it. Congrats Kiersten. Also, Kara came home with school with an invitation for us to attend the awards ceremony on Friday because she won one of the places (not sure which 1,2,3) in the speech contest with Devin’s poem.
See the day wasn’t all crappy. Some days are better than others. I think my frustration level is way off the charts, but hopefully we can all get some answers tomorrow.
Monday, April 26, 2004 afternoon
I got a call from home health with Devin's preliminary counts about 10:20am. His platelets are only 44 and his ANC was 410. Not good enough for chemo. Dev is glad he doesn't have to go into the clinic today.
I call the clinic rightaway and make sure they don't want to see Devin anyway, since his counts SHOULD BE going UP, not DOWN since the transfusions last week. Nope, they don't need to see him. (Great part here is the nurse asks ME what chemo Devin is supposed to be getting today....evidently his chart doesn't have that detailed info) The nurse said he would get back to me regarding the plan for Devin. (This was about 10:25am)
1:40pm home health calls to see what the plan is for Devin. They haven't heard back from the clinic and neither have I. Shortly after my conversation with HH, Dan calls from the clinic and says Dr. L. wants to put Devin on nupogen. No problem. He asks ME if Devin has received nupogen before...........yes, he has. He asks ME what Devin's weight is for dosing. Anyway, I give him the info as of last Wednesday and he gives me a dose.
Devin will get nupogen tonight and tomorrow night. Home health will be back out on Thursday morning to re-check counts. The nupogen will raise the WBC, but will do nothing to the platelets. My question was and still is....WHY are his counts NOT rebounding??? He had fevers, low counts then transfusions last week...no fevers or cold symptoms since...so what is going on with his blood?? Basically no one knows, so you guessed it!! Watch and wait!
Devin rode his bike for a little while this afternoon. He has been up all day without a nap so I bet he will go to bed early tonight. I'm scared again to let him ride too much. I don't want him to fall and break something or start bleeding. We don't need any mishaps around here.
Today is HOT. Devin wants to grill out tonight so I've got stuff for Randy to grill hamburgers and hotdogs. It will be nice to sit outside and eat dinner. We love being outside this time of year.
Thanks for stopping by to check on Devin. Although his blood doesn't look so great he still has a great attitude and acts like he feels pretty good. If you have a chance please sign his guestbook and let him know you stopped.
Monday, April 26, 2004
Well today is a true Monday!! Russ got here at 7:30am to take Devin’s blood. It should have been a short and sweet visit; only one problem, Devin’s lines (he has two) won’t draw. Not good. He is normally VERY positional so we move him around, wake him up, etc.. No luck.
Russ takes his temperature and blood pressure and we try it all over again. Still no luck. Finally Russ asks me if I have the de-clotting supplies (TPA) at my house. I told him I didn’t think I did, but when I checked sure enough (in the way back corner of the refrigerator) there it was. Just like a miracle.
Russ has a good memory. Anyway, then he got worried that he may not have orders to administer it so he called the hospital. After being on hold for what seemed like forever he got patched through to the clinic. One of the nurses checked Dev’s record and told him to go ahead. By this time it is 8:30am and we have Devin completely awake and downstairs watching tv. I was hoping to let Devin sleep in to avoid telling him he couldn’t eat, but that’s how it goes sometimes.
Anyway, Russ got the TPA done on both lines and sure enough they are working again. We don’t know what the problem was, but it is fixed now. Devin is wide awake and I am just waiting for him to start telling me he is hungry. That is what I am dreading.
When the TPA is done it wastes 5cc of blood per line so there is a chance that Devin will not qualify now. We weren’t so sure he was going to anyway due to all of the bruising, but it is a watch and wait. We’re thinking his platelets are too low not to mention the extra blood loss now. Devin usually can’t afford to lose any blood.
Watch and wait, watch and wait. Seems to be our motto around here. I hope to hear from home health in the next half hour. Then we will know if he needs to show up in clinic. His appointment is scheduled for 11:00. He is due for cytoxan (1 hour IV), LP of methotrexate and ARA-C (push). None of us, especially Devin, are looking forward to this next round.
Thanks for stopping by to check on Mr. Devin. If you have a moment please sign his guestbook and let him know you stopped. He loves reading the messages. Have a great day!
Sunday, April 25, 2004
An uneventful weekend. Thank goodness. Last weekend was spent taking his temp and blood pressure repeatedly so this was a relaxing time. Our weather was beautiful and we have been outside playing. The kids are both still trying to get used to the bigger bikes. It really scares me having Devin so off balance, but he insists that he is ok. He is a tough kid that’s for sure.
We went over to the school park last night and flew Kara’s new kite. She got a really cool butterfly kite for her birthday. The eyes move and it has a really long tail that blows around. Randy had it going pretty good for a while. It was fun. We saw a couple of our neighbors over there and the kids enjoyed playing together. I’m trying to talk our neighbors into taking the kids’ smaller, outgrown bikes. No takers. The kids are all wanting to have a garage sale. We’re talking about having one Harrison’s soccer season is over. We’ll see.
Not much else going on here. Devin isn’t eating much, so it should make being NPO tomorrow a little easier. I really dread when he can’t eat, but it usually turns out just fine. He is count dependent for tomorrow’s chemo so home health will be out early to do labs. I’m not so sure he is going to qualify. He has bruises on both of his arms just from the blood pressure cuff! It took me a minute to figure out what was causing the bruising, but I’m certain that’s what has caused it. The more I look at him closely the more bruises I see. He doesn’t have petechia on his neck and usually that is the first place we notice it. It will be a watch and wait AGAIN.
Thanks for dropping by to check on Devin. Please sign his guestbook and let him know you were here.
Saturday, April 24, 2004
Yesterday was a quiet day around here. Devin’s energy level is still pretty low so we stayed inside most of the day. He worked some on his homework, but mostly practiced his guitar. He is really anxious to get started back in lessons. Hopefully we can get him set back up when we figure out his chemo calendar. It seems our whole life revolves around the chemo.
Yesterday at lunch time Devin got a surprise; a pepperoni pizza delivered to the door. It seems that Devin may have a secret admirer. This is the second time this happened. It was such a nice surprise. He was speculating who may have sent the pizza all day. It sure lifted his spirits.
Devin’s teacher came over yesterday afternoon. She gave him some tests and some more homework to do. She is planning on coming over next Friday if all goes well this week. We will see. It seems like most of the times she is supposed to come over we land up making an emergency trip to the hospital.
I recorded Kara’s dance yesterday at dancing. She still has a lot of work to do to get it perfect. It is a really difficult dance for this age, but they are doing so well. The recital is only a month away so Kara is getting a little nervous. She was supposed to get her costume yesterday, but somehow another little girl got hers so we will wait until next week. That’s ok. If we had it here Kara would be wanting to wear it all of the time.
The kids rode their bikes for a little while yesterday evening. They are both trying to get used to the bigger sized bikes so it can be a little frustrating at times. Devin is doing very well, although he did have a pretty good fall and scraped up his belly. He said he was ‘fine’, but he was definetly through riding for the day. His balance is still a little off from the weight gain/vincristine combo. He will get better. He is already doing so much better that we know big improvements are on the way.
Today is the big marathon in Salt Lake City. It is really exciting because a lot of the money is going to the Huntsman Cancer Center for cancer research. This is the same place that Devin helped with a radio fundraiser. He was excited to hear so much money will be going to such a great cause. Until a cure is found for this horrible disease many innocent people are dying. Way too many. We are hoping in Devin’s lifetime a cure can be found and cancer will be extinct!!
Thanks for stopping by to check on Mr. Devin. He loves reading your message so please drop him a line and let him know you are thinking of him. Also, if you have some time think about visiting some of our other caring bridge friends. These web sites truly are our link to the ‘outside world’ as many of these kids are in the hospital or home bound. Thanks for you support.
Friday, April 23, 2004
Happy Friday!!
The sun is finally shining today and it looks like we will have a nice, sunny weekend. It was raining off and on yesterday so not 'outside' type weather. Our radishes are looking pretty good in our garden. Hopefully we will begin to see some peas pretty soon too. We've got some more seeds to plant if the garden will dry up a bit. Its pretty much a muddy mess right now.
Mr. Devin is feeling much better since getting to come home. His swelling is going down a little more every day so he is more comfortable. He was mad about the rain yesterday, but honestly I was glad to keep him inside and rest. He is not as strong as he thinks he is and continually wants to push it to the limit!! Typical kid I guess. He is so used to being inside that he is ready for a change of scenery!! I don't blame him.
Luckily his blood pressures have settled down. Last night was the first night in weeks that he didn't have to take his second blood pressure pill. Hopefully getting rid of all the excess fluid will resolve his problems. If he qualifies for chemo on Monday they will do another chest xray to see if the area in question has improved. We are all hoping it was only fluid retention.
The blood drive was held yesterday afternoon. We took the kids over to see the "Blood Vessel". A cool name for a bus that collects blood. They let us look around inside and check the place out. It is really cool how they can get so much done with such a small space. Devin thanked everyone for coming out to make the blood drive a SUCCESS!! He was excited to see parents of some of his friends there. Very nice. It really made him feel good for so many people to give blood in his honor.
Kara has her speech festival at school today. She is going to recite Devin's poem for it. She has been practicing and practicing. He was happy that she chose his poem to recite. We're hoping she does a great job with it. Earlier this week she surprised us all by bringing home the "Golden Author" award for a story she had written at school. She has really been working hard in school this year. She has learned so much and just acts like she loves her teachers.
Today Devin is practicing his guitar. He wants to get set up to take some more guitar lessons, but his teacher is only there on Mondays and Wednesdays for lessons. I told him after we get his chemo schedule worked out we should be able to get started again. He has some big plans of going on tour with Aerosmith someday so he can use all of the practice he can get.
Thanks for stopping by to check on Mr. Devin. He's so glad to be home. He's not anxious to possible re-start his chemo on Monday, but he knows thats what will get rid of this cancer. Please drop him a note and let him know you are thinking of him.
Wednesday, April 21, 2004 8:00pm
Home again, home again!!
Devin was discharged this morning. He was happy to get to come home. They did an EKG about 10:00pm last night and said that he looked good. Great news.
The dr's seem to think the xray was showing his heart to be larger than normal due to fluid retention in the sac around the heart. They started him on lasix while in the hospital and are hoping that will do the trick. His blood pressures were becoming more consistent before he left the hospital and his fever was gone.
The 24 hour and 48 hour cultures of his lines came back negative, so most likely he just had a viral infection. It is good to know that it is nothing serious we are dealing with here. He just looks and feels so much better after getting the platelets and blood. Like a new kid. I just wish they would have given him platelets on Friday WHEN HE WAS ELIGIBLE so we could have avoided the hospital.
Home health is scheduled to come out on Monday(early)to do labs. He will be NPO Sunday night and if counts are good he will go in for another chest xray. If the chest xray shows improvement it will be on to clinic and RTU for an LP(methotrexate), cytoxan (1 hour IV) and ARA-C(push). I'm hoping the doctors are right and it is fluid around his heart rather than something else. I don't even want to think of something else right now!
His energy level is still pretty low, but he is just so glad to be home. They really made sure he was comfortable during this stay. Christa really makes sure he gets what he needs while he is there! He had 3 tv's in his room at one time!! Luckily he had the largest room on the floor so we were good. One had a tv with vcr, the built-in one has DVD and computer, while the last one was hooked up to nintendo!! Quite a set up he had going!!
We appreciate all of the prayers and well wishes for Devin and our family. Please continue to keep Devin and all of the other caring bridge families in your prayers.
Tuesday, April 20, 2004 6:00pm
Devin is still in the hospital. He still has a temp and his bp's are still not consistent.
He was sent this morning for an echo, but now they are saying his heart is ok.....yet, later in the afternoon they are telling us he needs an EKG....so go figure.
Mom and I left here this afternoon to get Kara. We were home long enough to get Kara's homework done and answer some phone calls. Luckily they lifted the RSV ban at the hospital TODAY so Kara is able to go in the room. She was very excited.
Devin is feeling and looking better. They had unhooked his IV earlier, but his urine output is not good enough so they are re-hooking him. His color looks SO MUCH better than it has in days. The swelling has begin to come down as well.
He is feeling better, but not good enough to ask when he is going home. We haven't got the results of the 24 hour cultures (took these of his lines yesterday). Also, we are still waiting to get the EKG that was scheduled to happen at 4:00.
It's another watch and wait day. He isn't eating. This is a big switch from his 3 weeks of steroids. We can't talk him into anything. Hopefully this too shall pass because once he starts the next chemo he is for sure not going to feel like eating.
Thanks for stopping by to check on Devin. I will post more when I find something out. We appreciate your thoughts and prayers. Please take a minute to leave Devin a message. He really enjoys knowing who stopped by to check on him.
Tuesday, April 20, 2004 8:00am
Hello from PCMC room 4404.
Devin received over one unit of platelets, then lasix, then 2 units of blood over the night. While he has been here his blood pressures have been VERY inconsistent. His temp has been moving all around as well.....not normal.
A dr. came in during the night and was just blown away at the size of his belly. I told her that we had been VERY worried for over a week. She felt like his liver was enlarged, so we will be going for scans today. Also, the wierd blood pressures are because the sac that surrounds his heart seems to be full of fluid. (this is what they are thinking from the xray they took last night) He will be going for an echo laster this morning.
All in all he is feeling better and looking better. His color has perked up. We are going to get some answers here and hopefully be home soon.
Please keep Devin and the other caringbridge kids in your thoughts and prayers. Drop Devin a line....we will be checking in to post (hopefully) through the day.
Monday, April 19, 2004 5:00pm
We came into the clinic for blood today and Devin was admitted. They have ordered a unit of platelets and 2 units of blood. They have taken line cultures and started him on IV antibiotics. He will spend the night and re-evaluate in the morning.
We are also waiting for results of a chest xray. If he has fluid in his lungs they will start him on lasix. They will start him on nupogen shots tonight.
Devin seems fine with being here. He really doesn't feel good enough to do much complaining.
More later.
Monday, April 19, 2004
This has been a frustrating weekend to say the least. Devin has had a low grade fever all weekend. The hospital’s guidelines are 100.2 for an hour, then call the on-call. So, last night we call the on-call to find out we are still playing the same game, however; the rules have changed.
Previously we were told NOT to give him tylenol because they didn’t want the tylenol to mask any fever. Last night it is “give him tylenol” and he’ll be fine. “I’m sure his counts will be re-bounding, vincristine doesn’t affect counts.” Well, maybe vincrisitine doesn’t affect counts, but something sure has. His counts were BAD on Friday, but the dr. (head of oncology) decided that he will rebound on his own. Well it DIDN’T HAPPEN.
Our home health nurse was out at 7:30 this morning to do a CBC. A little before 9:00 I got a call from HH with the labs. They are awful!! Platelets have dropped again…now at 15. Hematocrit is low as well, so in addition to needing a platelet transfusion, he now needs blood as well. Great. Just great.
I called the clinic shortly after 9:00 to see what the plan was. I was told that they didn’t have the results yet even though HH had faxed them before calling me. At 10:45 HH calls again with the final numbers and to see what the clinic wanted to do. I tell HH that the clinic says they don’t have….she re-faxes them (3rd time actually)
I call the clinic again after she has time to re-fax. “We have so many faxes that we will call you when we find Devin’s labs”. 1:00pm I get a call from clinic: SURPRISE!! Devin needs platelets and blood. The nurse starts giving me the numbers. I told her I had received the numbers BEFORE 9:00 this morning. I have just been waiting, PATIENTLY, to hear what their plan is for Devin.
Here’s the plan: DON’T show up until after 2:00pm. They want to see him because he has had the fever and high blood pressure. They PROBABLY will only have time to do platelets (take about an hour) and draw a clot tube. Most likely we will be making ANOTHER trip to the clinic tomorrow to receive the blood (about 2 hours per unit…Dev has to have his washed and be pre-medicated due to reactions). Anyway, Devin is not happy about this. He feels really bad and I told him he will be feeling much better as soon as he gets the transfusion. He knows he will, but he is certainly not looking forward to the clinic.
Hopefully the transfusion will put both of us in a better mood. I am beyond frustrated with the clinic’s attitude. Seems like it is time for mom to “get mean” again. Wish us luck!! Please sign the guestbook and let Dev know you are thinking of him.
Sunday, April 18, 2004
Weird weekend here. Devin has not been feeling good. If he lies down his BP goes up and he has trouble breathing, if he sits up he looks so uncomfortable. He sounds like he may have something going on in his chest, but no coughing. Yesterday and today both his temperature has been staying between 99.6 and 100.2. The docs here want it to be 100.2 for an hour before they will mess with him. Frustrating.
The whole weekend has been spent staring at him. We are just basically waiting for his temp to stay at 100.2 or greater for an hour so the hospital finds him worthy. I’m sure his counts have not improved since Friday. He probably looks a little more pale, but I haven’t noticed any new petechia.
Tonight is dressing change night so I’m sure that will just about wear him out. It doesn’t take much these days to completely wipe him out. He has been sleeping in because he is just tired all of the time.
Tomorrow morning Russ, the HH nurse, will be here. He comes early in the morning so we can get the results early. I would imagine if we don’t land up in the ER tonight we will be in the clinic tomorrow for a transfusion. Either way, this week doesn’t sound like a whole lot of fun.
Kara is supposed to be going in tomorrow for her well child visit. I got a recommendation from several people at the hospital, as well as a friend about a good pediatrician across town. We will be giving him a try. Its just a well child visit so I would assume things will go smoothly. ( She’ll be mad when she finds out she misses one of her recesses.)
The kids had been going to the same dr. for years until Devin was diagnosed with cancer. We had taken Devin in repeatedly to this doctor only to find out he wasn’t interested in figuring out what was wrong with Devin, but collecting insurance money. Like my father in law said, the guy who graduates at the bottom of the class still earns the DR. title. This may just be the case with this “doctor”.
Anyway, a frustrating weekend. Devin’s energy and patience are running thin. The only positive thing I can think of about this experience is the fact that he WON”T qualify for the ARA-C and cytoxan on Wednesday. That stuff made him SO SICK before. I’ll have to re-locate all of the puke buckets before he gets started on that again. Cancer is no fun.
Hoping tomorrow will be a better day for Mr. Devin. Thanks for stopping by. Please leave him a message in his guestbook. He’s not up to being online right now, but I can certainly pass on the well-wishes to him.
Friday, April 16, 2004
Today is not so good. I took Kara to school then went by my doctor’s office to get some blood drawn. The dr. thinks I may be diabetic so I had to do a fast, then blood draw. Since it is Friday they won’t get the results until Monday, so I will probably have to go in for more blood tests if there is any free time next week. So basically I feel like I have wasted my time.
Devin is up and has eaten breakfast when I get home. I took his blood pressure and it if sky high. Unbelievable high. (168/149) I don’t believe the figure and remained calm and took it again in 20 minutes (as I had been instructed by the hospital). It is still HIGH. (132/117) Not as high as it was, but definetly too high. I called the clinic and was told to bring him right up.
By 11:00 we are in the clinic. Devin’s blood pressure is fine. He does, however, have the petechia on the right side of his neck. These always show up when his platelets are getting low. The dr. decides to do some labs and see what is going on. In the mean time the dr. is trying to dismiss the blood pressure issue. Luckily I had taken my charts of Devin’s blood pressures for the past couple of months and was able to show him that this has happened before. The time before was just a few weeks ago and home health was involved….and NO it is not my machine. There is a drastic fluctuation in his BP.
The dr. leaves and calls a cardiologist. The cardiologist says there definetly must be something going on to cause it. Prior to chemo ever started this kid had low blood pressure. Now he is taking BP medicine twice a day and still having problems?? The cardiologist recommends another drug, but the dosing is controversial. It is another capsule where I would have to withdraw medicine with a syringe and mix with juice….so not exactly accurate at best. The dr. tells me how important it is to get the dose right………because you don’t want him to ‘bottom out’. I ask him which is worse; too high or too low. They are both bad. I just don’t want him to get too low when you are at home….ok, I decided right there that if we experience this problem again we will be going BACK to the hospital. Frustrating.
Even more frustrating: Devin’s labs come back and are absolutely AWFUL!! His counts have dropped dramatically since they were taken on Wednesday. The dr. says his counts shouldn’t drop with the vincristine, but something sure as heck caused them to take a nosedive!! Who knows?? His ANC is close to non-existent, while it was borderline ‘good-enough’ for chemo on Wednesday! No one seems to know what has caused this drop. Also, his platelets are 21. They were 71 on Wednesday. He needs a 75 for chemo and the dr. didn’t want to transfuse until he dropped below 20. (He was looking at his watch as he told me this…happy Friday!!)
Before we left he reminded me to keep Devin away from people. He put a standing order for HH to come out whenever I felt Devin was ‘getting worse’, plus one for Monday….”if we are home”. Not a good feeling. He even told me he would talk to the on-calls for the weekend and update them on Devin and the probability that he would be in over the weekend.
I told him I really thought he should go ahead and give Devin a boost….it has always been his idea before (of course not on Friday)…..nope….”also, I don’t think Devin should make any attempts at riding his new bike over the weekend….hopefully it will be raining and he won’t even attempt to go out…if he gets a stubbed toe or skinned knee he will be back in”…….GREAT!!
Truthfully though Devin doesn’t even feel good enough to care!! He had gained a couple more pounds since Wednesday and is absolutely miserable. His right hand is shaking, while his left leg is shaking….Vincristine? He did this type of thing before with it. Not a fun drug. I am hoping to have an uneventful weekend. Wish us luck!!
Thursday, April 15, 2004
Randy took off from work a little early and we took the kids bike shopping. We went to 4 stores before we could get someone to wait on us. Seems we weren't dressed in our black spandex so no one was interested in waiting on us. Pretty funny.
Finally the 4th store we went to we got a really helpful sales guy. He sold Devin on a TREK bike. Devin was really impressed with the bike. The color he wanted wasn't fully assembled so Randy will have to go pick it up tomorrow. Devin is really impressed that this is the kind of bike Lance Armstrong, the cancer survivor, rides. Pretty cool. We spent much of the time at the bike shops talking to Uncle, the bike expert. Thanks for the input Uncle.
Kara found a pink/purple combo that she really liked. The name of it is Slumber Party and now she wants to have one..maybe someday Kara. Not tonight. She was so excited to get her pretty new bike. I can't believe she agreed to it even though it doesn't say 'Barbie' on it. She is a big Barbie fan.
Tonight when we got home Devin went back through his stack of mail. He got some really neat cards, letters and gifts. He got a couple of snap together airplane models from Aunt Sue and Uncle David. He was really impressed with those. He wants to hang them from his ceiling when they are done. I told them he would have to hang them becuase his room is full. He tells me it is all 'important' stuff. I know it is.
Devin tried working on the cool craft kit Margie brought over last night. (thanks again Margie) His right hand is very shaky so he has put it on hold. The vincristine is to blame. He is unable to hold his pencil with much success either, so didn't get much done in his homework book. Hopefully tomorrow will be better. He says his leg feels the same way. One wants to walk, the other wants to stay. Wierd the things these drugs do.
Thanks to everyone that has shown an interest in the blood drive. The blood drive will be hosted by ARUP and they will be accepting all blood types. Your donation can help many different patients. If you'd like to sign up call 565-1058 and tell them Devin asked you to call.
Devin appreciates you coming to visit his website. Please sign his guestbook and let him know you stopped. Have a great day and come back again soon.
Thursday, April 15, 2004
Yesterday’s visit went as well as any of them go. We were in and out of the clinic in 2 ½ hours which is kinda like record time in that place. Dev got the full dose of vincristine. The dr. says he is walking better and the counts were ok, so full dose.
After the clinic we decided to drive into downtown and visit my old work. Devin has been talking about going in there for awhile so we did. Everyone was glad to see Devin out and about. He was wearing his hat and mask, but I’m sure they wouldn’t have recognized him even without them. It was good to see Dr. C., Janet and Sheila. Like Dr. C. always says, “Good to be seen”. He is a really nice, funny guy. Good to see them. I’ll tell you that was one fun job…never a dull moment.
We also stopped next door and saw the ‘other’ Janet. She said all of her grandgirls are doing just fine. One was in the hospital a few admissions ago when Devin was up there….heart problem. Anyway, Vivian got a pacemaker and is pretty much good as new it sounds like. She’ll have to get another someday, but for now she is good. Janet also got a new granddaughter since I saw her last. I’m sure they are all cuties.
I fell asleep after Kara got home yesterday. Pretty soon Kara was out too. I’m feeling pretty run down today, but Kara was up and ready for school. Hopefully she will still be feeling good when she gets home. I know she won’t want to miss tomorrow; school class pictures.
Today Devin is feeling pretty good. He made another trip to the grocery store. We picked up some more yogurt, lunchables and some steak to grill. I told him I thought it would rain tonight so we will save the steaks for a nicer day. He picked up a MAD magazine at the store. He thinks it is pretty funny. Seems like it might be a bit more raunchy than I remember, but it has been a long time since I even saw the magazine.
We picked up Dev’s mail after the grocery store. He got LOTS of mail today. He received several envelopes and two boxes. Cindy let us hang up a poster about the blood drive. The blood drive will be held on Thursday, April 22, 2004 (next Thursday) from 4:00 – 7:00 pm in the blood vessel in front of the WJ Challenger School. If you’d like to sign up the #565-1058. Tell them Devin asked you to call.
Dev is a little shaky after his outing. His right arm is really jerky (thanks to the vincristine), but his balance seems just fine. He’s gained about 20 pounds from the 3 weeks of steroids…but we are told this is ‘normal’. He took his last dose of dexamethasone this morning. If his counts hold (or go higher) he is scheduled for an LP, cytoxan and ARA-C next Wednesday. This is his first LP in quite a while, so something else for me to worry about. Cancer is no fun….
Devin has been working quite a bit in the homework book his teacher brought over earlier this week. He has really been having fun doing ‘normal’ things. He misses school and was asking yesterday when he gets to go back. The dr. isn’t really ready to talk about it yet. He was very vague and basically said we will just have to see how it goes. I think the warmer weather has made Devin realize that he is ‘missing out’.
Thanks for stopping by to check on Mr. Devin. He loves reading what his guestbook so please leave him a message.
Tuesday night
The day got better. After lunch we had to run by Target and pick up some more drugs. Its always nice to go to the pharmacy. They are always so nice and concerned about Devin. He was feeling good so we walked around awhile in the store. Pretty soon a lady comes up to me and tells me she has some pictures for me. She looks familiar, then I recognize her. She is the gal that took pictures of the kids at the Target Portrait Studio just days before Devin was diagnosed.
She ran and got a large envelope filled with pictures that SHE had reprinted for me!! How nice. I was so surprised. I had taken the kids into Target in a panic a few days before Devin was diagnosed. Kara had come home from kindergarten with a loose tooth. I was afraid I wouldn’t get a good picture of her before she lost it……so a mad dash to Target. Boy was I ever glad I had those pictures done. They are such good pictures. Kara has her cute little baby teeth and Devin has hair. Never would I have guessed that those pictures would mean so much to me. Thanks for making my day.
We picked up a HILARIOUS surprise for Randy for whatever reason. He has his birthday and Father’s Day coming up and who knows if I will have Devin at the store to pick anything out anytime soon. A t-shirt with Homer Simpson on it that says something like Best Dad in THIS house….something to that effect. Devin was laughing so hard. Uncontrollable laughter. It was so nice to see him so relaxed and having fun. He laughed like I hadn’t seen him laugh in a long time. A good feeling. I don’t know if his laughter was really from the shirt or this new promise we have made to Grandma to find a song playing somewhere, anywhere that she doesn’t know the words to. He was getting a kick out of that as well. Lucky for Devin and Kara to have such a nice, singing Grandma. We kept teasing her the rest of the day about selling a video of her as the ‘Amazing Singing Grandma’…..he was laughing so hard.
Picked up one lonely card from the PO. The map is looking better with all the pins showing where the cards come from…….got some more cool cards in the mail today from Donnie and Linda, so gave Tennessee some more pins. Devin really thinks Grandma’s map idea is cool. Good geography lesson as well…….he loves geography.
Went into our favorite Cold Stone before heading home to pick up Devin’s daily dose of ice cream. He went for the banana with peanut butter cups today. He agreed that it was better than mint. I enjoyed talking with Phyllis (owner) there….she gave us a great deal on our ice cream…thanks…..their stuff is delicious….PLUS their company donates to the Make A Wish organization. How sweet is that???
Kara came home from school with the ‘science award’. She was really proud of herself. She was also happy to tell Devin that there is a poster of him up at her school. Her little buddy Gabriel pointed it out to her. The school is hosting an honorary blood drive in Devin’s honor on Thursday, April 22nd from 4:00 to 7:00 in the blood mobile. They also sent home a flyer with the kids telling about the blood drive. Devin is beginning to feel famous…seeing his name in print.
Mr. D. was able to come over this afternoon. Devin was glad to see him. They had fun playing games and Devin even earned a treat before Mr. D. left. He is a really cool guy with lots of fun things in store for Devin. I’m glad we finally got hooked up with him. Devin needs all of the positive reinforcement he can get. Mr. D had him laughing and asking when he would be back before he left….a good sign.
Devin’s teacher came by with some work for Devin to do. Hopefully he will remember to take it to clinic tomorrow and make some headway on it. She also brought a copy of the school newsletter. It has Devin’s picture in it…cool. He was impressed. First his name in print, now his picture. He feels good.
Tomorrow will be clinic for chemo. It should be his last vincristine. He seems so good I am hoping that it will be a quick visit. We always prepare for the worst and hope for the best. I’ve got his stuff together and ready to walk out the door in the morning. I feel like I am finally getting the hang of this clinic ‘stuff’.
Thanks for stopping by to check on Mr. Devin. I am happy to report that the lady at Q4U did not have the ability to ruin our day. There are still great people in the world who care. Thanks for being one of those people!!
Please leave Dev a message and let him know you were here….write something funny and you just might hear him laughing. Thanks
Tuesday, April 13, 2004
Interesting day. I woke up NOT wanting to stay home. I am not used to staying home all of the time and it is getting old. Devin woke up in a decent mood. He was feeling much better than Monday night. I talked him into going for a drive. We really had no plan, but after driving around for a while came across Toys R Us and decided to go in and look for a connector for his gameboy to the gamecube: no luck. We also looked at their bikes but he didn’t see any he liked as well as one he had seen on Saturday.
After leaving Toys R Us empty handed except for a pack of M&Ms we hit the road again. He told me he was starving for a BBQ sandwich. I remembered hearing about a BBQ place out by Toys R Us so we headed over there. First AND LAST time we will go there.
We walked in the door with Devin wearing his masks. He wears his masks diligently when he goes into public places. He is VERY aware of the danger of germs. He is also used to small children asking WHY he is wearing the mask. Of course the kids are curious…..not every day (Thank God) that you see a child out with a protective mask. Dev never has a problem telling people he has cancer and he needs to protect himself so he doesn’t get sick. No biggie. We have yet to run into a person who had a problem with this……………………..until today.
The lady at the front counter first says HI MICHAEL…..we don’t get it. Devin, Grandma and I look at each other puzzled….then she says, MICHAEL JACKSON, you look like you are playing MICHAEL JACKSON. We take a seat and order our food. Devin is embarrassed and angry. Why is she comparing me to Michael Jackson? I explain to him that Michael Jackson was first known for wearing the mask….for whatever reason, I don’t know. He tells me NO..that he knows about Michael Jackson. The Michael Jackson he knows about (thanks to newspapers, magazines and television) is an alleged child molester. He is upset. I am upset. The lady brings our food. I ask for an extra plate…..for whatever reason Devin’s sandwich is brought in a basket, while mine and mom's is brought in some take out container. No can do….we would have to buy ANOTHER PLATE. I am dumbfounded. First she insults my kid and next she wants to charge me for a paper plate…what a place!!
We eat in silence. I feel like we are in the twilight zone. I notice all of the awards on the wall for great this and great that……none for hostess of the year I notice. Devin enjoys his sandwich. I am glad. I can’t get over the initial impression to enjoy this crap. I am mad. I get Devin out to the car and come back inside to ‘have a little chat’. I explain to her WHY the hell this kid is wearing a mask….certainly not for fun and games. I guess the bald head and sunken eyes I have come to associate with cancer kids was way past her head. No apology from her….her response: Oh, I thought he would think it was funny. Sorry, wrong kid. He honestly does not want to be compared to a cm.
Anyway, I am calm and collected. I have learned through all of this cancer crap that people who really want to hurt you would REALLY like to see you cry and I had no intention of giving her the satisfaction. Devin had NO idea why I went back in…never said a word. I know he knew, but he didn’t say anything. I am very tired of cancer today. I don’t dare say this outloud. It just angers me that people can be so damn mean. Its not me fighting this crap, but then again I am. Devin, thank God, is still just an innocent in all of this. I read about these little babies, toddlers with cancer and think about how innocent they are, but the truth is they are all innocent. NO matter how old they are. These kids are amazing in their endurance level.
I do what I can to try and lift some of the burdens from him. Its not much, but it is all I can do. People used to ask…what can I do, what can I do. I don’t know. Just be there. Just know that I don’t want to have to think of something that needs to be done. Look around….I’m sure there is something that NEEDS to be done. My mind doesn’t work that way anymore. Today is a GOOD day. I am glad. It felt nice to pretend to be normal: go to the store, go out for a little lunch (11am to avoid any crowds)…..then be shot down. Damn her…I won’t let her get me down.
Monday, April 12, 2004
Weird day here. Devin slept in today. I guess he is over-tired from the weekend. He isn’t used to doing that much in a week, much less a weekend.
He is tired today and not himself. We ran by the post office box and got his mail. He was really excited that he got a letter from France in the mail. It had some really cool stamps on it. He loves stamps. After that we ran in Cold Stone and got him some ice cream to bring home. Devin just loves their mint ice cream with peanut butter cups in it. Sounds gross to me, but he gobbled it up.
3:00 pm
We got home and he was wiped out. Pretty soon he started throwing up. Not good. I checked his temperature…none. I called Mr. D. to see if he was planning on coming over…he was just fixing to call me so I told him what was going on. Devin is disappointed that his time with Mr. D. isn’t going to happen; we will re-evaluate tomorrow.
He wanted spaghetti for dinner. I fixed it, but he still didn’t feel like eating. He acts like he feels awful. I took Kara out of the house after dinner so it would be quiet. When he doesn’t feel good she really aggravates him.
He has a low grade fever now, but nothing the clinic would find ‘worthy’. I talked to his HH nurse tonight and he said just to keep an eye on Devin. His blood pressure is ok and he is drinking ok, so watch and wait. I just know he doesn’t feel good. I am sure hoping it is nothing and he will be on the mend.
Hoping tomorrow will be a better day. Did find out about the next blood drive. It will be held on Thursday, April 22nd from 4:00pm to 7:00 pm. I will find out how to sign up and post the information when I get it. Hopefully we will get a lot of people to donate blood.
Monday, April 12, 2004
We had a great Easter. The kids were up early to follow the chocolate coin trail to their Easter baskets. So much stuff, too much stuff. Between Grandma and the Easter bunny these kids are loaded up! Seems like we have candy in every room in the house – not a good thing.
The Easter bunny had left eggs all over the living room and in the kids’ bedrooms. Later the kids looked outside and found the backyard was covered as well. Lots and lots of eggs. They had a great time hunting for eggs. Devin was moving a little slower this year, but still found his fair share. The rest of the day was spent hiding and re-hiding the eggs. The kids even hid them for the grownups; dad won (I think he had a little too much help from one little girl).
The Easter dinner was just great. We had a ham, of course, and all the fixins. Grandma made some hot rolls and I made some of the mini cheesecakes with blueberries. Devin just loves cheesecake. He really enjoyed the meal. He ate and ate and ate. It was good to see him enjoying himself. I just wish I could have taken the salt out of that ham. He is already really puffy from the steroids and I’m sure he didn’t need any extra salt. He did act like he really liked it.
Devin was wiped out from all the egg-citement. Randy, Kara and I took the dogs walking later in the day, but Devin was too tired to go. He stayed home with Grandma and looked at the bike catalogs. He is really wanting to get a new bike. He had out the phone book looking up bike shops last night. He wants to take a day and go look at bikes with his dad. If only dad didn’t have to work for a living that would work out just fine!
He is still sleeping this morning. It is amazing how tired he gets from doing so little. Like the doctor said last week in clinic: his body is similar now to a woman who is nine months pregnant, so he is going to have the same energy level and aches and pains; along with the side effects of chemo. Hopefully he will be feeling better and more energetic soon. He looks miserable.
Thanks for stopping by to check on Mr. Devin. I hope you all had a great Easter. It was a beautiful day yesterday and looks like it will be nice again today. We just love spring around here. Its just so full of nice surprises; the trees and flowers are blooming and its just so pretty outside. I’m going to see if I can get Devin up to enjoy the day.
Saturday, April 10, 2004
After we left the Make a Wish egg hunt we decided to go look at some bikes. Devin found one he really liked, but Kara didn’t find anything PINK enough for her. The bike shop has one on order that should be in later this week. We will go back and see the bikes again when the pink one comes in. They have both outgrown the bikes they have so it is that time again.
We went over to another friend’s house for another egg hunt. The kids had a great time over at Nicholas’ house. They had fun playing, eating snacks and hunting for eggs. By the time we had the egg hunt over there the wind had calmed down a little, but it was still cold. Nicholas was surprised to see that Devin had lost his hair AGAIN. Devin seems a little self conscious of the fact that he is bald again (almost…has a few stray hairs hanging in there). He was just getting used to having hair, almost enough to brush. He has been wearing a hat continually, even to bed!
Next year little Matthew will be down running around after Easter eggs. Its hard to believe he is seven months old now!! He was born just right at the time Dev was diagnosed. Seems like he should still be teeny, tiny and Devin should be DONE with chemo.
The kids had a hard time settling down yesterday. It was a busy day and we have been indundated with treats from friends and neighbors. Yvette brought over some cookies Friday night while we were away. They are almost too fancy to eat. She makes a sugar cookie with IMO, the artificial sour cream, in them. They are almost like a pastry. They are GOOD. She brought over a giant tray of them, so between the cupcakes and cookies we made and those cookies we are stocked for sweets. (OVER STOCKED)
Randy and I went to Brent’s wedding reception last night. Mom watched the kids while we went downtown for the reception. The only parking place we could find was to double-park so we just stayed long enough to unload a gift and sign the guestbook. After that we made an exciting trip to the Fed Ex drop off at the airport so Randy could send out a report. We have a real exciting life around here…..oh, and then we stopped by the party store to get some ‘gold’ coins. Kara informed Grandma and Ann yesterday that the Easter bunny always leaves a trail of coins to the Easter baskets. That kid’s memory is TOO good sometimes!
It’s funny the things kids remember. Just hoping this Easter doesn’t pale in comparison to ones of the past. I know that Devin is uncomfortable most of the time and not feeling like himself. It seems so different to me. I just want the kids to enjoy themselves and be KIDS!!
Saturday, April 10, 2004
A big day here. Devin woke up several times in the night asking if it was time for the egg hunt. He was very excited. Cold and very windy here today. Looks like it could rain. The kids are dressed WARM for the egg hunt.
The egg hunt was at The This Is The Place park. It is across from the zoo. I couldn’t believe how many people were there. It was busy. Devin was disappointed because they didn’t have lunch first! His appetite is still out of control even with the taper of steroids. Dad found him a cookie and got him settled down until the egg hunt started. Kara enjoyed going around to the different tables and playing the games and doing crafts. Devin just wanted an egg hunt and FOOD!!
We saw the Easter bunny then the egg hunts started. The kids were in two different groups for the egg hunt. They each got a few eggs and came on out to open them. We were told prior to the start that we needed to empty the eggs and turn the plastic eggs in before leaving. Devin was really disappointed when he opened his eggs to find unwrapped candies inside. Needless to say, with a compromised immune system one does not eat unwrapped candy. He was really angry. I told him we had lots of candy at home that was ok to eat.
Speaking of eating…by this time the pizzas had arrived. I’d never seen so many pizzas in my life. We found a place in the sun and Devin filled up on pizza. Pretty soon he forgot about the egg hunt and was ready to go. We turned in the plastic eggs and the kids each got a coloring book and a coupon for a kids meal at Chic F Le. It was COLD up there and we were glad to get in the truck and headed for home.
Friday, April 9, 2004
We had a good day today. Kara has been out of school on spring break all week. For the most part it seems that Devin has enjoyed having her home. She has been wanting to take a trip to the candy factory over at Alpine all week. Today Devin decided he felt up to the trip.
We were surprised at how many people were there. It was BUSY! Devin really had trouble making up the stairs to observe the candy makers. The steroids have really made him hurt. Devin likes to watch the video. Kara really likes to watch the people making the candy climbers. We watched for awhile then went downstairs to get some treats.
It was so busy. Devin gets VERY nervous when he is around so many kids. He doesn’t want to get sick. We saw another chemo kid over there. His mom said his counts were good so he was un-masked. Devin’s counts are ok….but he is very diligent about wearing the mask. I’m glad its not a struggle to get him to wear it.
As we were leaving the candy factory we saw Cindy, the nice lady from the UPS store. She had some of her grandchildren with her. We were surprised to see someone we knew over there. Small world.
After the candy factory we drove over to Orem/Provo area. We stopped at a barbeque place that Kara, Grandma and I had been before last year while Dev was in school full time. He really enjoyed it. We were lucky that we were able to get in and out of there before the lunch crowd hit. It is nice to be able to go out to eat every now and then. Devin feels safe about it as long as the place isn’t too busy.
We came home from the trip and Devin had to take a break. We watched some Sponge Bob and got ready for our egg coloring at Holly and Kevin’s. We went over and dyed lots of eggs and had an egg hunt with Harrison and Samantha. It was a quick egg hunt…right after the guys hid the eggs it started raining and thundering. Those kids were running as fast as they could to get the eggs. They had a good time.
Tomorrow will be a good day. The kids are excited about the egg hunt sponsored by Make A Wish. We also will have an egg hunt over at a friend’s house in the afternoon. Randy is wanting to look at new bikes for the kids, so we will try and fit that in somewhere. Should be a BIG day. I’m sure this weekend will wear Devin out.
Critical care called with his counts. Still dropping, but doesn’t need a transfusion. That’s good. Devin is feeling so much better since the doctor upped his blood pressure medicine. His blood pressure is still running high, but he just acts like his old self for the most part. Nice to see him feeling good.
Friday, April 9, 2004 8:00 am
Yesterday was a MUCH better day for Devin. I had given him a 2nd blood pressure pill on Wednesday night so he woke up with normal blood pressure. He just acted like he felt so much better. It’s about time. He has felt pretty crappy for quite a while now. Good to see the ‘old’ Devin shining through!
It was really rainy and stormy yesterday morning. We decided we would make some Easter cookies…just one problem…no shortening. I planned on a quick trip up to the store. I was really surprised when Devin asked if he could go too. He hasn’t asked to go anywhere in a LONG time. It was good to see him take the initiative. He was proud of himself too.
We went to Albertsons. Everyone was sure glad to see him up and out. He was surprised that so many people had so many kind words to say to him. It seems I am in there all of the time with employees asking how my little curly headed boy is doing. I was so glad he felt like getting out.
After baking cookies; sugar and chocolate chip, Devin found a recipe for some cheese balls he wanted to try. A little bit interesting. You roll them into balls and bake them. We saved them to go with our dinner. I don’t think he was very impressed with the way they turned out. Kara really liked cutting out the cookies. She is getting VERY good at rolling out the dough and cutting out perfect cookies.
Grandma went out yesterday and bought Devin a HUGE United States map. He decided to start tracking all of his mail since he is now getting so much thanks to MACS. He has really got some cute cards. He is enjoying it for sure! The UPS store was very kind in donating him a box to receive goodies.
When Grandma got home from the store she took over the cookie operation. It was so funny. I went out to put the cheese balls in the freezer and come back in to see Grandma and Kara cutting out cookies and singing the theme song from Annie. Those two were cracking me up! Just wish I could have found the video camera in time to catch them in the act!
All in all Devin had a good day yesterday. The forty minutes we were gone to the store pretty much took away all the energy he had. It is amazing how little endurance he really has. I am hoping that he will be able to hunt eggs this weekend. He has ALWAYS really loved egg hunts. We will see.
Right now I am just waiting to hear about Devin’s bloodwork. Russ was out early this morning to do labs so now is just watch and wait. There is a chance he may have to go in for platelets. The doctor has lowered the criteria for transfusion so we will see. Watch and wait. Low grade temp so we’ll see what happens there too. He looks good so we’ll just see how the day goes.
Thursday, April 8, 2004 2:41 am
The clinic visit went as well as I had expected. I could tell there had already been talk about what had happened on Tuesday. As soon as Devin was put into a room, the main doctor came in to see him. The usual procedure ( the last 100 times) has been for the nurse to come in ask the questions, then the dr. comes in. Not this clinic visit. I could tell he had been forewarned that mom was not going to be happy.
I did tell him (in the nicest way possible) what had happened. Of course he acted as though this was news to his ears. He asked what time all of this took place and I told him all FOUR times that I had called in, along with the responses. He was very nice and reassured me that Devin could be seen at PCMC at ANY time that he needed to be seen. I told him I knew that was what was SUPPOSED to happen and the staff there should know me well enough to know that I WOULD NOT call if there was NOT a problem. He did apologize and was very thorough in his examination of Devin.
Kara had gone along with mom and I to take Devin to the clinic so he even spent some of his valuable time asking her questions. It was so funny for Kara to visit the clinic for the first time. She had envisioned some type of mini amusement park…..just sure that Dev was having the time of his life up there. She was sadly disappointed. After she had done all of the crafts she could tolerate, taken a trip to the cafeteria and gift shop and met most of the staff in the hospital she was ready to GO!! Not so soon, Kara, we’ve only been here an hour……….still need to get Devin’s labs back and see where he stands!
The labs were still headed south. The WBC has gone up…thanks to the nupogen still being in his system? Or an infection? All other counts have dropped even more since Monday. His platelets were only 32, but the doctor now says since Devin’s WBC is higher he would wait to transfuse at 20. Watch and wait. He is VERY bruised up. Dr. said unless he starts having nose bleeds or other noticeable bleeds that he wouldn’t transfuse. His BUN is also STILL high so that brings up the question of continuing Ivs.
I told the dr. that I had taken it upon myself to NOT give him an IV on Tuesday night since all of my medical experience (NONE PRIOR TO 9-19-03) had told me that the excessive fluids from the Iv’s could be contributing to his elevated blood pressure. I had done this BECAUSE THE CLINIC DID NOT HAVE TIME TO ADVISE ME ON WHAT NEEDED TO BE DONE WHEN I CALLED ON TUESDAY. (His blood pressure was normal at home prior to the clinic visit and also normal at the clinic.) The dr. agreed that this was a good idea and again apologized for the clinic not finding the time to see Devin. He ALSO said that Devin’s blood pressure medicine needed to be increased. THIS WAS THE MAIN REASON THAT I HAD CALLED THE CLINIC ON TUESDAY….THINKING THAT IF A DOCTOR HAD TIME TO LISTEN TO WHAT THE PRESSURES WERE THAT THE MEDICINE MAY NEED TO BE ADJUSTED. (Just call it mom’s intuition)
Because of poor liver and kidney function tests Devin was only given half a dose of vincristine. The dr. also said that he was not walking right. This is most likely due to the vincristine. Devin’s breathing is still labored, but dr. says it is from the pressure of his stomach. He said Devin’s aches and pains right now would be similar to a woman who is 36 weeks pregnant. That is pretty much how he acts as though he feels: bloated, back pain, trouble bending and walking. That’s what he reminds me of too. I feel bad for him because he is not happy right now. Thank goodness the taper on the steroids finally started. Hopefully his ravenous appetite will subside. It has been pretty much out of control.
After Dev got his chemo he insisted we take Kara to the Hard Rock Café. He really enjoyed eating there last week. It was nice because it was not busy so he could relax and not worry about crowds. Kara liked it too. Seems like ages since I had both kids ‘out to lunch’ with me. I really feel bad that I had to change Kara to all day K after Devin’s diagnosis; but luckily she just loves school. I still can’t help but feeling guilty for having her gone all day. I guess the only way I can justify it in my mind is the fact that if she were home it certainly wouldn’t be like old times. For the most part Devin just doesn’t feel up to doing much. I have to keep reminding myself of that. It is nice to have her home this week. Hopefully Devin will feel like doing a little something Thursday. I would hate for the highlight of her spring break to be a visit to the clinic. Ha.
Thanks for stopping by to check on Devin.
Tuesday, April 6, 2004 9:20 pm
Frustrating day here. Devin woke up not feeling well. I took his temp and it was normal…his temp is usually normal…actually he usually runs low, if anything. Anyway, then checked his blood pressure….HIGH. I don’t panic, I check again in 20 minutes, as I have been instructed to do. Still HIGH. I get Devin some breakfast and call the clinic.
The clinic responds by telling me how busy they are and ask me if I really think there is a problem. I go on to explain to the nurse that not only is his BP high, but also he is having trouble breathing STILL. He is bruised all over and hasn’t done anything to get bruised. Her response: do you really think this is a problem? We have a lot of kids in the clinic today and I’m not sure if/when we could see Devin……..what? The kid has extremely high blood pressure WHILE ON BLOOD PRESSURE MEDICINE, can’t breathe, looks and feels awful……..and his mother is calling???????? Honestly, did she think I had nothing else to do????????????????????????????????? Of course I think there is a problem. I would not have wasted my morning back and forth with these “professionals” if I didn’t think there was a problem.
I am beyond frustrated with the ‘practice’ of the clinic. Each and every time he has been there we are told about some other child having a worse day than Devin. Yes, I know there are children that are in worse shape than Devin, but does that really mean he is less important? I have NEVER in my life been to any doctor that explained to me that my ailments were any less important than another patients. I find it ridiculous that Devin is ever compared to any other patient.
What these doctors don’t realize is I KNOW this kid and what is NORMAL for him. Today was not NORMAL. I realize that the fluids from the IV along with the steroids and chemo can raise his blood pressure……I honestly realize this, but I also realize when your child is gasping and panting for air that there is a PROBLEM.
Today was a day of constantly checking his bp and temp. He has had a low grade fever at times today, but nothing ‘Hospital worthy’. It is frustrating. I know there is a problem but unless he gets MUCH WORSE he is not worthy of the doctors time. It makes me mad.
Tomorrow is clinic day. For once I am excited about going. I know he needs to be seen and tomorrow I am hoping the dr. I really like and trust will be there. I HOPE, HOPE, HOPE she is there. He needs someone to take the time and figure out WHY this is happening and WHAT needs to be done to help him.
Monday, April 5, 2004 5:00 pm
Devin is ok. He isn't feeling that great, but not too bad. I FINALLY heard from the clinic about 2:30. The nurse wanted to know if I thought Devin still needed an IV since his BUN was high...............yep, I would imagine he would. It never ceases to amaze me how the parents, not the doctors, are asked to make these decisions.
Anyway, now waiting for home health to bring out some more IVs. Devin is eating ok...not as hungry as he has been, but ok. Not drinking quite like he should so the IVs should definetly help keep him hydrated.
The clinic decided to wait until Wednesday to transfuse. The doctor is thinking eventually his counts should start coming back up. The nupogen brought the WBC up, but all other counts have dropped.......???? Anyway, I guess if counts don't come up on their own then he will get a transfusion. Watch and wait.
Talked to Craig's mom this afternoon....what a neat lady!! It was so nice to talk to her after exchanging e-mails for so long. Helen it was GREAT talking to you!! Have a good trip, you guys definetly deserve it!!
Not much else to report. We did have a picnic at lunch. We have year round school for the most part here, so the park was EMPTY. Just us. Kara enjoyed playing, but Devin remains too weak to do much. It was an effort just to get him from the car to the park. He tires so easily. Hopefully his counts will start to come up and he will begin to have more energy.
Thanks for stopping by to check on Devin. He enjoys reading his message so please take a moment and sign his guestbook.
Monday, April 5, 2004 10:40 am
Devin had an OK day yesterday. Energy level is still low. We did another IV and nupogen shot last night. The preliminary numbers are showing that his WBC is up; actually higher than we have seen it, but all other numbers are still headed down.
I am waiting to hear what the final labs are. His platelets are borderline so I am wondering if they will want to do a transfusion. Watch and wait.
Today is Kara’s first day of spring break. It seems different having her home. Not to mention the day light savings time thing. Seems like a true Monday today.
Devin’s IV stopped after he got up this morning. Actually Russ (the HH nurse) stopped it when he came over to do a CBC and panel on Devin early this am. He re-started it and the pump started beeping after Devin had eaten breakfast. I wasn’t prepared for it to stop so I had to run upstairs to get the supplies. In the meantime I forgot to clamp it off and had a entire tubing of blood. Scared me to say the least. I called the HH pharmacist and Hau told me that it really wasn’t that much blood loss……just looked like a lot!! I feel horrible because I know that the clinic and HH are always SO CAREFUL not to waste blood…………..!!!!!!!!!!!!!!!!!Aaaaaaggghhhhh!! Makes me mad at myself that I made such a stupid mistake.
I don’t know if Mr. D is coming over today or not. Devin is feeling OK..not great, but OK. The sun is shining and it looks like a beautiful day outside. Hopefully he will feel like getting out and getting some sunshine. It is good to see him outside, even if it is only for a short time. I would like to take the kids and do ‘something’, actually anything. Grandma is not feeling so great so probably would be a good idea to get Devin away from her today.
Still waiting to hear what the clinic wants to do with Devin. I’ll update when I know something. Hope you all have a great day. Thanks for stopping by…please sign the guestbook and let Devin know you stopped!!
Saturday, April 3, 2004
Devin is feeling about 100% better than yesterday. I was surprised at how much better he was acting and feeling. More like his HAPPY self!!
He has been saying he is hot all day....a complete turn around, as he has been freezing for the past week or so. He acts like he is feeling so much better. The IV and shot must have really perked him up.
I just started his IV again to run over the night. He still needs to get his nupogen shot, but shouldn't be too bad. He has plenty of experience with shots. He doesn't complain.
He played outside today. He even rode his bike a bit. He plays for a little while, then has to rest. Certainly not up to par, but much, much better. The sun has been shining and we have taken advantage of the beautiful weather.
Last night I noticed he is losing quite a few of his eyebrows. Tonight as I pat his head he is beginning to lose his hair....he was just getting a good covering too!!
He's happy that his friend Craig got out of the hospital today and is feeling better. His friend Laura is feeling good as well. Seems like life is good today. We take the good days when we can get them.
If you'd like to send Devin a card:
Devin Ross
6914 S. Redwood Rd. #429
West Jordan, UT 84084-2407
He loves reading his messages, so please sign the guestbook.
Thanks for checking on him!!! Have a great day.
Friday, April 2, 2004
Well, quite an interesting day. We spent most of the day at the clinic. Devin’s nurse came out to do the CBC and thought Devin looked and sounded awful. He called the clinic and gave them Dev’s stats and we were told to bring him right up.
Upon arriving at the clinic we found out that Devin’s counts had NOT improved since they were last taken on Wednesday. His ANC is very low..160. The labs said his plasma lipids were extremely high…..the NP didn’t know what this meant. The dr. said it was probably a problem with his liver or pancreas.
They ordered another CBC and several different panels. The panels all came back good….within range anyway. His BUN was elevated; which means he may be getting dehydrated.
Since the second set of labs were ok the dr. decided to hold off on the ultra sound of the abdomen. His belly is VERY distended (looks like he is about 9 months pregnant) and looks very painful and tight. The dr. seems to think TODAY (didn’t think this on Wednesday) that the stomach being so enlarged may be causing him to have trouble breathing. Anyway, another watch and wait.
He was sent home on IV fluids over the weekend; as well as nupogen shots to try and build his counts. He is EXTREMELY GRUMPY. I feel really bad for him. He is mad because he is getting the shots, but we do what we have to do!!
Hopefully tomorrow will be a better day for him. Kara is acting like she is feeling better, so hopefully what the rest of us have is allergy related. Everything is blooming and the wind has really been blowing today.
We just need to keep him well and hope that he doesn’t get a fever or he will be for sure in the hospital. Home health is scheduled to re-do the CBC on Monday. I don’t know when he will get his home schooling. His teacher was due to come today, but we were in clinic, so had to cancel. Hopefully she will be able to come out sometime next week. We’ll see.
Thanks for stopping by to check on Devin. He appreciates the notes you leave in his guestbook, so please leave him a message.
Friday, April 2, 2004
Well we are not off to such a great start this morning. Kara woke up sniffling and sneezing, I woke up with really itch eyes and Devin just acts like he feels miserable. Who knows what the day will bring.
Russ, our home health nurse, just called. He won’t be here until 10am so they will be running the CBC stat. Still we probably won’t get the results until close to noon. This is a little aggravating to say the least. If he needs blood we won’t find out until later, then we will land up spending the day at the hospital. Well, we will cross that bridge when we come to it.
Right now he has eaten a BIG, monster truck sized breakfast. He is lying on the couch looking absolutely awful. Pale and says he is freezing. No temp. BP is a little high.
UPDATE:
Nurse just here. He thinks Devin looks awful. BP is high, breathing is labored. Stomach looks distended. Color is not good. Clinic is waiting on us.
More later.
Thursday, April 1, 2004 10:21 AM CST
We had a visit from the tooth fairy last night. Kara lost another tooth yesterday at school. This is the fifth one she has lost..all since Devin was diagnosed and all of them at school. She was excited to wake up this morning and see that the tooth fairy had left her some money.
Well today is April Fools Day. Devin got out his whoopie cushion and ‘hid’ it under a towel and made grandma sit on it. That one just never gets old. He was up before Kara left for school and had a bowl of cereal. Right now he is playing gameboy and thinking up some more April Fools Day jokes. I’m sure he will think of some good ones before his dad comes home from work.
Devin says he is feeling ok today. He is VERY pale. Yesterday he was a really pinky color so today he looks sick. He says he is ok though, no headache or nausea. We will just see how the day goes.
Rainy here. A depressing day. Today is my Grandma Woods’ birthday. She was killed in a car accident on September 2 just shortly before Devin was diagnosed. I couldn’t sleep last night because I was thinking about her. I’m sure it will be a hard day for my dad today. The first birthday without her here. I hope you are dancing in the flowers grandma….and giving out medical advice!! Grandma was a GREAT nurse and friend to many people. She is definetly missed.
Not much else going on here today. Home health will be out in the morning to check a CBC on Devin. If his counts are lower we will probably be headed up to the clinic for a blood transfusion. Watch and wait.
Thanks for stopping by to check on Mr. Devin. He loves reading his messages so please sign his guestbook. Have a great day…..and if you have sunshine where you live, please send it our way!!
OK day here. Devin went to clinic today and got a really thorough check up. We got the same doc as last time, Dr. McAllister and she is very nice and thorough. Devin has been having some weird breathing the past few days so she was very interested in that. She said the bottom of his lungs aren’t working exactly like they should be. He was sent down for another set of chest xrays. The xrays look good. No fluid or anything.
Labs were not so great. His counts have made a nosedive and the dr. doesn’t think it is from vincristine. His platelets went from 127 last week to 50 this week. His WBC is basically non-existent….so low ANC as well. The dr. seems to think he may be getting ‘something’, so best to keep him away from kids. Doesn’t want him to catch something with his counts so low. He is scheduled for a CBC at home on Friday morning to see if he will qualify for platelets and/or blood. Watch and wait.
I had told Devin after his appointment we would go to the Hard Rock Café for lunch. I knew it would be an off time, so figured it would be ok. Sure enough the place was pretty empty. Its funny I suggested eating there a few weeks ago when we were driving down town waiting for a room to open up and he thought it was a bad idea. He had a conversation with Uncle the other night and suddenly it is a great idea. He did enjoy the place…a little disappointed that there was no Aerosmith stuff, but still some neat stuff to look at. He ate every bit of his cheeseburger and fries. The steroids really keep his appetite up!
He was wiped out from the big day at the clinic. We were only up there a couple of hours, but that place really wipes him out. He only played outside for a few minutes tonight. He had his mask on because the wind was really up. Seems like there is so much stuff in the air you just can’t be too safe when his counts are so low.
Hopefully tomorrow will be a better day for him. The combo of steroids and chemo have NOT made him a happy camper. Keeping my fingers crossed that tomorrow is better.
If you’d like to send him a card:
Devin Ross
6914 S. Redwood Rd. #429
West Jordan, UT 84084-2407
Please sign his guestbook and let him know you stopped by.
Wednesday, March 31, 2004
Devin is up and hungry. We decided to get online before going to clinic and check on some of his caringbridge friends. Poor Craiggy is still in the hospital and now Laura is sick…..GET WELL SOON guys!! It is amazing what these kids are going through. I think it makes Devin glad to be home and feeling ok.
Besides being hungry, Devin is doing just fine. He is not looking forward to the clinic visit, but hopefully it will be short. They will do a CBC then decide if he qualifies for a full dose of vincristine. The taper on the decadron doesn’t begin until the 7th.
Not much else going on here. Kara has decided she will memorize Devin’s poem for the school speech contest. She has been working hard on that. She will be on spring break next week so she will have lots of free time to practice.
It is another beautiful day in Salt Lake City. The flowers are peeking out everywhere. Spring is such a fun time of year. It is always surprising to me to see where my bulbs have landed up. So far we have several hyacinths, crocus, violets and different tulips. It smells very fragrant at our house. Randy and Kara planted some veggie seeds over the weekend so we will see what happens there. Hopefully we will have some luck. I think as long as we have tomatoes and chilies everyone at our house will be happy.
Thanks for stopping by to check on Devin. Starting tomorrow he will be one of the featured kids on the Make A Child Smile website. If you would like to send him a card here is his new address:
Devin Ross
6914 S. Redwood Rd. #429
West Jordan, UT 84084-2407
Please sign his guestbook and let him know you stopped to check on him!!
Tuesday, March 30, 2004
Devin reminded me this morning that AEROSMITH's new CD was coming out today. We went over to Media Play and picked it up. I was really surprised when they had a picture of me inside the case.......I said that to Devin and he did a double take. He is too funny. I figured after he saw the picture he would die out laughing, but instead he told me that my belly wasn't pierced. He is too funny..... For those of you who know me and have seen the CD please try to contain your laughter. I tried to get him to go for a picnic while we were out, but he just wasn't feeling so great.
It has been a lazy day around here. Devin's feet are swelling and making it more difficult to get around. Today he tried to ride his bike and found out his legs are too tight to ride, so instead we play basketball.
I'm glad Devin can find something else to occupy his time when bike riding is not possible. He loves riding his bike. He just loves being outside in general. He always has been an outdoor kind of guy. Hopefully this year we can do some camping. The kids love camping and we pretty much have all of the supplies; of course if would be different this year because we would have to take another vehicle just for medical supplies.
Devin is not looking forward to his clinic visit tomorrow. I told him I would like to go upstairs and say HI while we are there, but he is totally against it. He told me that everytime some kid goes up for a visit they land up in the hospital...he may have a point. So we probably will skip the ICS visit. Maybe I can talk him into doing something else fun while we are out. We will see. I'm curious to see his counts, he still has the spots, but no worse than they have been.
Overall no major complaints. This is probably the easiest Devin has had it since being diagnosed so it is nice to not be 'on hold' for admission at any time.
Please take a moment and sign his guestbook. He loves to read who has dropped by to check on him.
Tuesday, March 30, 2004
Well the month is almost over….its always been a big month for us, with two kids and two birthdays! A fun month!
Devin was feeling pretty miserable yesterday. He is aching and says he has a headache. He stayed inside under the blankets yesterday just being lazy. He didn’t feel like reading or playing his game. Finally about 3:00 he decided he wanted to go out and shoot some hoops.
He is really getting good at basketball. Randy raised the hoop to increase the challenge and Devin is doing really well. By the time Mr. D. came over Devin had a whole new attitude. He really enjoyed meeting with Mr. D. last week and was excited that he was coming to see him again.
Mr. D. had plans of playing some board games with Devin, but it was such a nice day that they landed up playing basketball the whole time. Devin rode his bike just a little. His joints are really freezing up from the steroid/vincristine combo. What a combo. What one drug doesn’t do to make you feel miserable, the other does. I looked at Dev’s schedule yesterday and he doesn’t begin the taper until the 7th!! Seems like a long time away.
This morning Devin is complaining of being cold again. He has already eaten his first breakfast, but I’m sure will be eating another soon. The steroids make his appetite OUT OF CONTROL!!!! It is almost like it is not him digging through the refrigerator and cabinets. I guess you could say he is ‘under the influence of steroids’…..with the hunger also comes the sad mood. Poor kid. I’ll be glad when he is through this phase of treatment.
We went over to Gardner Village for dinner last night. Surprisingly Devin didn’t eat his dinner….he did eat mine though. After dinner he wanted to walk around and check out the candy store. He talked grandma into getting him a GIANT twirlypop. He liked looking around the store. He loves gumball machines and the store had several; even some old fashioned ones. Dev was impressed.
The sun is shining and the birds are chirping. Looks like a beautiful spring day. I’m hoping to get Devin out in the sunshine to enjoy the day. Seems it would be a perfect day for a picnic. I think I will pack some sandwiches and take a little drive. I think it is good to get him out of the house for something other than clinic. Speaking of clinic, he has another appointment tomorrow for more of the dreaded vincristine.
Have a great day…thanks for stopping to check on Mr. Devin. Please take a minute and sign his guestbook. He really enjoys reading his messages from well-wishers. Also, if you have a free minute, please visit some of Devin’s caring bridge friends site. There are several listed in his guest book….hopefully I will get a pull-down menu on his site soon.
Thanks..
Monday, March 29, 2004
Happy Monday. Devin was up EARLY this morning crying for food. After two egg sandwiches and 2 yogurts he was tired and went back to bed. His energy level is way down and he is moving a little slower each day. It will be nice to be finished with the steroids. We will begin the taper soon.
Yesterday was a sunny day. Not as warm as it looked, but a pretty day. We drove up to the Bingham Copper Mine only to find the visitor center was closed for the winter. It will be open again on April 1st, so maybe we will go next week while Kara is out for spring break..
I also took the kids to the park, but Devin was chilling and just generally too wiped out to play. Its amazing the effect these steroids have on his body. Its almost like his joints are freezing up more each day. Between the over-eating from the steroids and the chemo kicking in he is not feeling so great.
Hopefully today I can get him out of the house for a little while. He got his gumball machine in the mail over the weekend so we need to go buy gum for it. Also, I was thinking maybe we might go over to Barnes and Noble and spend the gift certificates Aunt Anita and Uncle Bud were so nice to send. He loves going there and looking at all the great books.
Right now he is playing his gameboy. He feels hot, but no temperature. His spots look about the same as yesterday…so watch and wait again. It seems weird not to have home health coming out twice a week…right now we are only scheduled for weekly in-clinic blood draws.
Thanks for stopping by to check on Mr. Devin. He is home and we are thankful for that. Many other kids are stuck in the hospital at this time. Please if you have a moment sign Devin’s guestbook and take the time to visit some of the other caring bridge sites…….just a quick note is all it takes to put a smile on a child’s face.
Sunday, March 28, 2004
Kara had a really fun time at her party yesterday. She had 16 kids show up for her party, plus some of their siblings; so quite a large group. She got many of her favorite things; barbies, bratz, clothes and art supplies. One of her friends brought her a snow cone machine that she just loves. She also got a pretty pink pony and some more dress up stuff. She really acted like she had a nice time. The pool was VERY busy so it was nice to have so many parents stay to help out. The level of chaos went down when we were able to get the kids out of the pool and into the party room.
Devin was past tired of waiting for us when we got home. One of Kara’s friends had arrived at the party late so we stayed after cake and let her swim with Grace. By the time we got home Devin was mad. He really felt left out of all the excitement. Next year he will be there! This year his immune system just couldn’t tolerate being around so many kids….next year!
Again, it was good to have so many parents stay and help supervise these kids. I don’t think we will be hosting a swimming party again any time soon. It was very fun for the kids, but as the ‘people in charge’ it was very nerve-wracking!! Thanks to Stacy and her family for helping…good to see Stacy’s mom out and about….(she was diagnosed with lung cancer shortly after Dev was diagnosed). Also, thanks to Ann for helping me get the party room organized and set up…hopefully she got some good pictures for me. Luckily we had quite a few parents in the pool….thanks to all of you!! Holly thanks to you guys for taking the plunge with the kids.
Devin and Grandma were shooting hoops while we were at the party. Devin is having some joint pain from the combo of steroids and vincristine, so hasn’t been riding his bike. He acts and looks pretty uncomfortable, but he is still up and walking around. I think the bike may be on hold for a few weeks….it seems like his knees are really bothering him. They aren’t as swollen as last time, but still painful.
Devin has been in a down mood all weekend. The steroids have made him pretty miserable and incredibly HUNGRY. He acts as though he cannot get enough to eat. His stomach is tight and I keep expecting him to be getting sick from so much food. This morning he has the spots on his neck and arms….petechia. We’ll have to keep an eye on them. He is not due for CBC until Wednesday…so if it gets worse we’ll probably be going in earlier for blood…at least a platelet transfusion. Watch and wait.
We are talking about going outside and playing for awhile. The sun is out and looks like it will be a beautiful day. Devin is really getting into basketball these days so maybe he will shoot some hoops. He is also wanting to take Grandma to the Copper Mine since she has never been there. It should be a fun day.
Thanks for stopping by to check on Mr. Devin. Angel Chris has been working hard on a new and improved slide show for Devin which should be up and running soon. Also, a new friend, Helen, has made Devin an ULTRA COOL banner for his site. Hopefully these things will be in place soon. Please sign his guestbook and let Devin know you are thinking of him!!
Saturday, March 27, 2004
Well Devin had an ok day yesterday. He is grouchy…the steroids have made him puffy and uncomfortable. His face is a little rounder each day and his belly looks tight. He is eating lots. The steroids have definetly kicked in!!
His teacher came to tutor yesterday. He was worn out by the time she left. He really tires out quick. As the teacher was leaving the school counselor came by to visit with Devin. This is his first time with the counselor. Devin seemed to enjoy meeting him. Mr. D. is planning on coming back on Monday after school time. He has some games he wants to play with Devin. It should be fun!
I fixed turkey, dressing and mashed potatoes for dinner last night. Devin really acted like he liked the meal. He completely missed out on Thanksgiving this year so I figured yesterday was as good a day as any to have turkey. His favorite was the pumpkin cheesecake. It was really good.
Today is Kara’s big day. Her party is this afternoon at Gene Fullmer indoor pool. She invited about half of her classmates, plus several other friends. We got one more RSVP this morning, so sounds like everyone is coming!! Should be a fun party! She is really excited. We just picked up her cake from Sam’s Club and it is just beautiful! Pink with a beautiful multi-colored unicorn. She was impressed. It should be a fun party.
Devin and Grandma will stay home while we are at the party. Devin is still mad that he can’t go to the party, but he certainly doesn’t have the stamina to go to the party. Swimming is definetly not an option for him…..next year!! The sun is finally out today so hopefully he will feel like getting out and riding his bike.
Thanks for stopping by to check by to check on Devin. He appreciates the messages you leave in his guestbook……so sign away!
Friday, March 26, 2004
Devin had a pretty good day yesterday. He rode his bike for a little while. Doesn't have a lot of energy, but knows when he has reached his limit. It was good to see him outside enjoying the sunshine.
Devin's friends Margie and Gypsy brought him dinner last night: a delicious pepperoni pizza, cheesy bread, salad and cheesecake suckers!! What a treat. These ladies really know what Devin likes! Thanks guys!! Devin and Kara loved the new books Margie brought over......the birthday party continues.........we've been celebrating since we got Devin's good news on the 11th!
Devin is cold today. Not feeling so great, but not complaining. Let me tell you this kid is tough. He has to be really uncomfortable before he lets on to anyone. I am so proud of his strength. I'm happy that he is still moving around so well after the vincristine and steroids. The steroids are really making him puffy and I'm sure uncomfortable.
It is raining HARD this morning. The flowers are really enjoying the rain. We certainly need it. Hopefully the sun will be out for a least a little while so Devin can get out and ride his bike and get some fresh air....don't know how fresh the air is...seems like every other house in our neighborhood has a sign where the lawn service has been out. Scary.
I guess I am paranoid about everything....even more so than BEFORE CANCER.......Randy never put chemicals on our lawn because of the pesticide threat....and Devin gets cancer anyway...seems like it doesn't really matter how careful you are when it comes to cancer.
Anyway, I will stop rambling and say have a GREAT day!! Please sign the guestbook. It will make his day!!
Thursday, March 25, 2004
Devin is up and feeling good this morning. He has been very tired since his last admission so he falls asleep very easy. The dr's yesterday said this is very normal, so not to worry.
He looks a little puffier today. I was massaging his legs last night and they are just so smooth!! Took me a while to figure out why...they are completely hair-free....so soft!! I guess chemo is the ultimate in hair removal.
His head still has a covering of hair. He will probably be losing it soon. It has been just over a week since he got the daunorubacin. That is the drug that got rid of it before....and will most likely take it again. I'll tell you that first time of losing hair was pretty traumatic. I'll bet this time it will seem like old hat.
Devin is still talking about the make a wish from last night. He was presented with a key to the special 'wishing room' and told he can come back at any time. We keep joking with him that we should go back every day just to 'hang out' up there. I bet they would not expect that!!
He is really proud of the key. Kara was wanting to keep it in her room, but he refused. I'm glad he did. He usually seems to give in to her. This is something that I'm sure he will keep for a VERY long time.
We took lots of pictures last night. My favorite was Devin in front of that sign: Welcome Devin Ross May All Your Dreams Come True!! That was just too cool. He really liked the sign. I'll have to post a picture of it on his site.
We are lucky here in Utah that we have the one and only wishing place right here in Salt Lake City. It is a really COOL place. Everything about it is just perfect. The house has many special rooms each with a special purpose.
When you enter the building and look up there are bunches of stained glass stars hanging from the ceiling. When Devin gets his wish he will pick one of those stars and engrave his name on it. It will then hang in the MAW house from now on. He said he wants a blue star.
The room where the sign was is also a place to hold parties. Last night after Devin was through with everything we made ice cream sundaes in the party room. Everything is so special....stars everywhere....even the ice cream bowls are star shaped!! You would have to see it to believe it!! The best thing, in my opinion, are the kids' pictures and stories hanging in this room. There are some pretty cool stories of these kids and their wish.
The wishing experience here is a BIG deal!! Evidently the house has been in the works for quite some time and Devin is one of the first children to actually go through the wishing process there. Pretty special!!
Although Devin was completely tired out by the time we were finished last night I know he had a good time. I am glad that he is aware enough to want to hold off on recieving his wish until his line is out. It will be nice to go when he is finished with his treatments and has more energy.
Thanks for stopping by to check on Mr. Devin. He is tired, but feeling good. He enjoys reading the messages you leave for him, so please feel free to sign his guestbook, even if you just say HI! He especially liked the message from Nancy yesterday...a person he has never met, yet takes the time to come back to visit. She was even kind enough to send a letter to Emeril asking him to write Devin back!! He was really impressed with her kindness.
Please, it just takes a few minutes to sign these kids guestbooks. Caringbridge is full of kids, like Devin who could use your support and kind words. If you have a couple of extra minutes visit some of the kids who have signed Devin's guestbook.......there are many of them out there!!
Have a great day!
Wednesday, March 24, 2004
A big day today.
Devin had clinic at 1:30. His labs were really good. Some of the best blood results I have seen in awhile. His counts should start dropping with the vincristine, but for today he is good.
Devin looks good. He is a bit puffy and will get even more so. The steroids have taken effect and he is now hungry. It is wierd to have him eating again. His favorite thing to eat right now is a cheese quesadilla...made at home, of course. He ordered one the other night at the Mayan but didn't even touch it.
He loves the new bear he made at Build a Bear. He carried it to the clinic with him. This is quite out of character for him, but he REALLY seems to love that bear!! He spent most of his time in clinic lying down with the bear beside him. Usually he wants to play their nintendo, but he was just so tired yesterday.
Randy's dad came over and helped Randy til up the garden. The kids are excited about what they will plant this year. Kara said there are some onions already growing out there. Seems like we usually will get quite a few volunteer tomatoes before the summer is over.
I fixed chicken stir fry for dinner. Devin said it smelled good, but refused to eat it. He opted for peanut butter crackers instead. His tastebuds are pretty out of whack from the chemo. At least he is eating some protein. There have been times when he even refused peanut butter...it used to be one of his favorite foods!
Tonight we had our big appointment with the Make a Wish people. It was quite a deal. They had a sign on their projector that said "Welcome Devin Ross May All Your Dreams Come True!!" It was really cool.
Devin's wish granters are Tom and Samantha. Samantha is our neighbor Holly's friend. They gave us all a wish coin to throw in their fountain and make our own wish. Pretty cool.
Make A Wish gave Devin all kinds of goodies: a hat, t-shirt, balls, frisbee and a slinky. They even gave Kara a popsicle maker and Barbie watch. She was really impressed with the watch. Nice of them to think of her too. She (along with some others) thinks that Devin is getting WAY too much attention. Let me tell you he would trade the "attention" to never having cancer in a heartbeat.
The wishing session went very well. Tom played a game with Devin to find out exactly what Devin likes. He then took Devin's wish and put it in a special container to be put in the wishing room. Very ceremonial.....anyway, Devin's wish was to go to Florida and see it all....mostly interested in the space museum and of course the Rockin' Rollercoaster in MGM.
Devin's real wish I believe was to be a pilot, but of course being 8 years old that isn't really a reality. I know he will have a lot of fun when he goes to Florida. He wants to wait until his central line is out because he really, really wants to go swimming. We are hoping to get his line out in September.
Wednesday, March 24, 2004
Kara had a good birthday yesterday. She asked me to bring her lunch; a sandwich from Subway. She didn't want to go out for lunch because she didn't want to miss recess. I stayed after she finished her sandwich (the kids are eating outside now it is so nice) I pushed her and five of her friends on the tire swing. Devin said the reason they call it the tire swing is because the person who pushes it gets "tired". I believe it. Those kids were having a blast and I was worn out.
Devin wanted to make some brownies for Kara for her birthday. We made a pan of brownies then cut out some circles and put icing (pink of course) between the layers. She didn't eat the brownies, but she did eat the frosting! She is a silly girl. Icing and sprinkles, what a life!
Devin and Grandma took a walk yesterday to the park while I was at the UPS store and Kara's school. Cindy at the West Jordan UPS store donated a post office box for Devin to use. We got word while he was in the hospital this last time that he will be featured soon on the Make A Child Smile website. He will most likely be getting a lot of mail from this site. He is excited. He has been writing some letters to celebrities in hopes of getting a response. It is good for him to practice his writing skills while he is away from school.
By the time Devin got back from his walk yesterday he was completely exhausted. He is sleeping so much more now that before. He seems a little less stressed about his whole situation and relaxes to sleep a little easier. It is nice to see him at peace. It seems like the last six months have involved such stress. Hopefully the rest of his treatments will get rid of this tumor in his chest and let him be done with chemo. He is ready to get on with his life!
He has a clinic appointment at 1:30 this afternoon. He is getting vincristine. I cannot tell you how much I am dreading this. I absolutely, positively despise this drug. It made him so miserable last time he had it....back in September and October. I am NOT looking forward to its horrible side effects! It just seems so mean. I feel like we are in such a catch-22 situation. His scans don't show cancer, yet he still has a tumor in his chest. All it takes is one cancer cell. Just scares me to death.
He enjoyed Kara's day yesterday. It wore him out, but he did have fun. She wanted to go to the Mayan to eat so we tried to get there early. We go early to avoid the crowds and the possiblity of germy kids. We are so out of the loop that we had no idea it was "kids night". Kids eat free. Devin ordered a meal, but he just doesn't eat much. He did enjoy the divers. I think that is the only reason we go there....they really do have a good diving show. The place was swarming with kids...a little scary.
After dinner the kids wanted to go to "Build A Bear". Their friends, Rickey and Aryn, had sent them gift certificates so they wanted to use them. They both picked cute teddy bears. Devin made his into a pilot and named him Phillip. He was really proud of his bear. Kindof wierd that he picked Phillip of all names; my dad had a brother that died before he was born named Phillip. Strange coincidence. Kara picked a bear and dressed her up in a very cute...you guessed it, pink outfit. She named hers Anastasia Heart. She is a cutie. They both had a really good time. Devin seems oblivious to the kids pointing and asking their parents why he is wearing the mask. I'm sure most parents (thank goodness) have NO idea why he is masked. Hopefully they will never find out first hand why my son is so paranoid of germs and getting sick. Cancer is NO fun!
All in all Kara had a good day. She was beyond tired by the time she got home, but a good tired. Devin was tired too and glad Kara had a good day. He was so excited that we were able to find her a pink Barbie scooter for her birthday. She has been wanting a big girl scooter for quite some time. Hopefully this vincristine won't make him unable to join her outside riding bikes and scooters. This is why I am so much dreading this drug. I am thankful that the chemo works, but do not like the side effects at all. I will be glad when he finishes treatment and can get on with his life.
Please sign Dev's guestbook and let him know you were here.
Monday, March 22, 2004
Well Devin had a busy day today. He finished his treasure book for school so we were able to play outside this afternoon. He loves to shoot hoops and is really pretty good at it. He tired very quickly, but enjoys it while it lasts.
This evening we went over to Randy's parents to celebrate Kara's birthday a little early. Randy's mom fixed a roast and of course cake and ice cream. Kara was so impressed with the beautiful cake with the pink flowers and swirly pink candles. She thinks birthdays are just great!!
Tomorrow is Kara's big day. We are finally starting to get the RSVP's on her party. She is having a swimming party on Saturday at a really cool indoor pool. She is really excited. Devin is unhappy because he won't be able to go: too many people and the dr's don't want him swimming with the broviac in his chest. This will be Kara's first birthday party that he doesn't attend. I'm sure it will seem really wierd.
Devin has had a pretty good day today. He is not looking forward to going to the clinic on Wednesday, but knows he doesn't have any other options. Hopefully it will be a short visit and we will be done with clinic for another week. A week away from that place seems like a real vacation!!
Thanks for stopping by to check on Devin. He is looking and feeling more like his old self every day. He's a much skinnier version, but surely these steroids will kick in and he'll start gaining some weight soon. Please sign his guestbook and let him know you stopped.
Monday, March 22, 2004
Happy Monday!
Devin is up and is feeling ok. He has been so tired since he has been home from the hospital. He came home on two nights of IV fluid and finished his last bag about 9am. He has eaten a little breakfast, but mainly just lying around complaining of being cold! Trust me, it is not cold here. It's already about 70 degrees outside. Something about this last chemo has made him cold.
He doesn't have a lot of energy. He has been working on finishing up a project that is due at school today. After he gets it done I am hoping to get him out in the sunshine for a little while. Hopefully that will perk him up.
He didn't have a blood draw this morning so I am assuming his counts are pretty good. His next appointment is Wednesday at 1:30 for the vincristine push. I am not looking forward to it at all. Last time he received it he really suffered with it. It caused his knees to swell and his balance to really be off, not to mention jaw pain and headaches. Hopefully this time will not make him so miserable.
Tomorrow is Kara's 6th birthday. Last night grandma and I took her to see Disney Princess' on Ice. She just loved it. All the pretty princesses; including her, of course. It really was quite a show. I'm hoping that Devin feels good for her birthday. I think she will probably want to go out to the Mayan to eat for dinner.....that seems to be what we have done for the past several years on her birthday. It's hard to believe these kids are growing up so fast!!
Thanks for stopping by to check on Mr. Devin. Hopefully getting out in the sunshine will perk him up a bit. It is another beautiful day here in Salt Lake City! Spring has sprung!
Please sign his guestbook and let him know you were here!
Saturday, March 20, 2004
Thanks for stopping by to check on Devin. He was released from the hospital this morning. He finished his second chemo IV, cytoxan, about 2:30 am. He acts like he feels pretty good. A little grumpy, but we'll blame that on the steroids he is now taking 3 times a day.
He is out riding his bike with his sister right now. He wanted to ride over to the park behind our house and try out one of the new airplanes he got for his birthday. It is a beautiful day here...very sunny and nice. Hopefully the week will stay nice and he'll feel like being outside.
Yesterday was a good day at the hospital. He was very sleepy most of the day. Didn't wake up until after noon and took 2 naps after waking up. The nurses made a sign for his door that said "Happy Last Inpatient Chemo Devin" and sang to him. He acted like he was a little embarrassed because they caught him out in the hall and started singing at the top of their lungs with their crazy party hats on. They gave him a quilt too, very nice. His friend Christa, from the admitting desk, gave him a framed copy of his poem with his picture in it. He was really happy about that and the card with vending machine money in it. A pretty good day.
So far he just acts so glad to be home. He lost a little weight in the hospital, but will most likely be gaining weight again because of the steroids. His next clinic appointment is the 24th. He will go in and receive vincristine. It should be a short visit because it is just a push drug. He will be on it for 4 weeks, then start another drug.
Thanks again for stopping by to check on Devin. He looks and feels good. We're glad to have him home!
Thursday 3-18-04
Well we had a little 'incident' tonight. Devin was lying in bed playing gameboy and I was on his bed watching tv when all of a sudden he told me he was leaking. I asked him what he was talking about.....he lifted up his shirt and his IV (the one with chemo) had come completely undone. It was dripping down his chest so I pulled it away from him and pressed the nurse button. I shut off the iv, but of course it had enough fluid in the line to drip on my hand and on the bed. It scared us both!!
When the nurse came in the room she was basically in shock. The nurse we have tonight is a float nurse, so she basically knows NOTHING about chemo. She ran and got another nurse and the clean up began. After stripping Devin and his bed the incident patrol came. What an experience. They gathered up all of the laundry, including Devin's clothes, and put it in hazmat bags. Quite an ordeal.
By the time it was all said and done...2 hours later, Devin was completely wiped out!! He has not been in such a great mood, so this certainly didn't help. Not to mention that it absolutely terrified him. Devin has a red patch on his stomach that they will be watching. Hopefully it will go away and not become anything big. He has so many newly discovered allergies that I am not holding my breath.
I got it all over my hand and it is burning. I'm not sure if I am just paranoid or if it really hurts. One thing is for sure neither of us will be forgetting this incident any time soon. He hasn't been in a very good mood (blaming it on the steroids and the fact he feels like he is going to throw up) and this certainly didn't help matters.
Here's hoping tomorrow is a better, UNEVENTFUL day!! Please sign Devin's guestbook and let him know you were here.
Thursday, March 18, 2004
Just a quick update.
It is about 3:00 here and all of a sudden Devin decided he was tired, so he is taking a little nap. He has been in a good mood all day and HUNGRY thanks to the dexamethasone.
We made a trip earlier to the candy machines and decided to walk across the bridge over to University Hospital. He decided the best machines are right here on the 4th floor. It was nice to get out and walk around though.
He started the chemo last night about 9:15, so it won't end until about that time on Friday night. After this stops he will begin another chemo drug, which takes one hour. They will want to evaluate him after he finishes both, so we are looking at going home Saturday at the earliest.
He is having a good day. No complaints. Hopefully it will be smooth sailing from here on. Thanks for stopping by to check on Devin. Please sign his guestbook and let him know you stopped by to check on him.
Wednesday, March 17, 2004
Devin woke up in just a great mood today. I guess he is glad to have his grandma back in town!! We got the call from the hospital that Devin should be there around 2:00. Devin wanted to go and eat at Sweet Tomatoes before he got admitted so we went and he ate really well. He didn't even complain too much about having to go to the hospital.
He got admitted and in room 4407 about 2:30. He quickly got situated and the nurse told him he needed to have a good urine output before they could start the daunorubacin. We weren't exactly prepared for this, but Devin started drinking and finally about 7:30p they gave him the anzimet (anti-nausea). Dad, Kara and Grandma came up to visit and we went walking down candy machine hall. Devin picked out a few things and by then his IV was beeping.
Randy is staying tonight with Devin. He said Devin had a shower, then a dressing change and the 48 hour IV officially started at 9:15pm. This means it should end about this same time on Friday night, then he will get another drug. The NP said before Devin can be discharged he will have to be doing ok as far as keeping his food down. So, hopefully Devin will get out Saturday morning if there are no complications.
He has had a good day and smiling and happy all day. He will start the dexamethasone (steroid) tonight and will get it 3 times a day. Hopefully his mood won't be altered too much, but its certain his appetite will increase.
Thanks for stopping by to check on Devin. We are certainly hoping this chemo admit goes smoothly. Please sign Devin's guestbook and let him know you stopped by.
Tuesday, March 16, 2004
Thanks for stopping by to check on Devin. He has had an uneventful day. Not feeling the greatest, so he has been a little lazy. He did help me make an ice cream cake this afternoon. That has been about the extent of him doing anything.
Dev's blood pressure has been a little on the high side today. I told the hospital about his elevated blood pressure, but they didn't seem too concerned about it. They just said his blood pressure medicine (norvasc) would probably be increased tomorrow if it stays high.
We don't know what time he will be admitted. The charge nurse will call me sometime tomorrow before 2pm....so that really narrows it down!! I pretty much have everything gathered up, so basically it will just be driving up there. Hopefully we can get him checked in quickly and get the chemo started. The daunorubacin is the first drug he will be getting. It is a 48 hour IV. It is also the very first chemo drug he ever received. I'm not quite sure what to expect from it this time. The last time he got it he was in the PICU. We will see.
Devin is not at all looking forward to going to the hospital. I told him it SHOULD be his very last chemo admission, but he still wasn't too impressed. He has been in a rather down mood today....until grandma got here tonight. Now he seems to be in a better mood. That's good.
I got a call from Sam from Make A Wish this afternoon. We are scheduled to go to the wishing place on the 24th if Devin is feeling ok. He will get to play a "wishing" game and try and decide what his wish really is. He is excited about going. Our wishgranter, Sam, is my neighbor Holly's friend...small world.
We had another celebration tonight when grandma got here. Devin really liked the cake. It was chocolate chip ice cream with butterfinger and chocolate layers. This was Devin's 4th birthday cake this year. We like to spread out the festivities around here. Seems like we are celebrating the entire month of March!! A busy month.
Thanks for stopping by to check on Devin. I will post tomorrow when I find out for sure if and when he will be admitted. Please sign the guestbook and let him know you were here.
Monday, March 15, 2004
Devin slept in today until about noon. He has just been wiped out from all of the celebrating!! He finished his oreo cake and is ready for me to make him another cake tomorrow. I still haven't decided what kind to make. We'll have to have another birthday celebration when grandma gets here tomorrow night, so I need to get busy.
He is still really enjoying that game cube. He got 2 new games at his party, so he has been "busy". Hopefully tomorrow he can work on the illustrations for his book he is writing for school. He got most of the writing done while we were at the hospital on Thursday.
Today was the big blood drive. After lunch Devin and I met Randy down at Club MAC. While we were there we saw Joe and Scott from KBULL, as well as Anna's parents and our friend Steve. It was nice to see so many people coming in to donate blood. Very nice. We certainly appreciate all of the people who took time out of their day to come to the blood drive. The last I heard over twenty people had donated. I didn't get to find out the exact number donating, but do know that some people were not allowed to donate. It makes me feel good to see how thoroughly the donors are screened.
Devin enjoyed seeing how the blood drive worked. He was glad to hear that grandpa and his cousin Travis had donated earlier in the day. We really appreciate all of the blood donors; both at today's drive and the "regulars" who keep Devin supplied. What a great gift.
Tonight we took the kids and had their birthday pictures made. The pictures turned out really good. Devin's hair is just growing in enough that you can see it. I'll have to get the new pictures posted soon. I still can't believe that my babies are growing up so fast!! Devin just turned eight and Kara will be six on the 23rd. Time sure goes fast!
Tonight Devin is intent on practicing his guitar. He is getting better and has been talking again about getting his band together. He is totally serious when he talks about it. He really has some big plans for the immediate future. He is so funny. Just this week he has told me of his plans to get his pilot license, become a rock star and an engineer. He is always making plans for when he is "done with this cancer". I'm glad he can fast forward past this and focus on other things.
Thanks for stopping by to check on Devin. He's had a great day and not through celebrating yet. He's still scheduled to go into the hospital on Wednesday for his last scheduled inpatient (daunorubacin) chemotherapy. That is cause for celebrating!! Make sure and sign his guestbook and let him know you stopped by!!
Sunday, March 14, 2004
Devin has had a great birthday weekend. He got up early on his birthday. He was excited to turn eight and wanted to make the day last as long as possible. His favorite gift would have to be the game cube that his dad insisted on getting. I’m not sure who wanted the game cube more; Randy or Devin.
He also got a lot of nice books. He received several books about airplanes, one about mummies, an atlas and a book about the Titantic. He loves to read and I’m sure when the novelty of the game cube wears off he will be hitting the books. He got some really nice airplanes too. Seems like by now everyone knows of his love of planes.
On his birthday we had a very low key day. He said he wanted to grill pork chops for dinner with baked potatoes so we did. He ate ok. He had to save room for the cake and ice cream. I was too lazy to bake a cake so I let Sam’s Club handle that one for me. It was really good with whipped cream frosting. A little too much frosting if you ask me, but the kids sure seemed to enjoy it. Devin received a bunch of cards in the mail and several phone calls. It was a pretty exhausting day. I think his life has just been a whirlwind since we found out on Thursday he is cancer free.
Today we had a very small party planned to celebrate Devin turning eight. He decided he wanted to play miniature golf for his party. At 8:30 last night we were calling a few friends to come and play with us. I had nothing set up. It was all very thrown together this morning, but it all worked out just fine. The weather was just perfect and the kids (Devin, Kara, Ireland, Nicholas, Harrison and Samantha) all seemed to have a good time. There were a few hole in ones – one by a very proud Kara. Devin just loved the cake (chocolate with oreo frosting) I picked up this morning at Albertsons and the smiley face napkins. He just acted thrilled with the whole thing. The quickest and least thought out party I have ever done, but honestly the most rewarding. Thanks for all the friends that were able to make it!! Couldn’t have asked for a nicer day for an outdoor March party.
After the party Devin was exhausted. He has pretty much been worn out the rest of the day. Randy grilled hamburgers tonight, but Devin opted for a pizza lunchable. I couldn’t believe he could turn down one of his dad’s famous hamburgers!! He did eat cake though. We sang to him again and he blew out that #8 candle yet again.
Plans are to have another “party” on Tuesday night. I am planning on getting my act together and baking a cake this time. Last year I made an ice cream cake for him and he really enjoyed it so maybe I will try that again. I’ll have to see what I can figure out tomorrow. We are just planning on spreading out this celebration as long as possible. He is feeling and looking so good. He thinks it is just great to be eight!
Tomorrow is the blood drive. If you are reading this and you are in the Salt Lake area and are interested in signing up I believe spots are still available. You can call Susan at 561-2200 to sign up. I have been told they are extending the hours to accommodate more people. We are excited about all of the response. Devin, Randy and I are planning on going down to the blood drive some time tomorrow. Devin is interested in seeing how it all takes place.
Tomorrow should be a busy day with the blood drive and making sure we have everything ready for the hospital on Wednesday. Devin is not at all excited about the prospect of going back in the hospital, but we are hoping if things go well this will be his last inpatient chemo. All of the other chemo on his schedule is to be done either in the clinic or at home!! That is exciting news. We are hoping, for once, to follow the road map given to us and be done with this cancer sooner rather than later.
Thanks for stopping by to check on Devin. I’m happy to tell you that he has had a fabulous birthday weekend with no plans of stopping the celebration any time soon. He’s feeling and looking good…even has a covering of hair!! He’s enjoyed all of the messages people have left him from all over the globe. The Aerosmith fans have just been AMAZING with all of their special birthday notes. Thanks everyone!!
Saturday, March 13, 2004
A little bird told me that someone was turning eight!! Hope you are finding it great to be eight Mr. Devin!! The day you and Kara were born were two of the happiest days of our lives. Who would have thought to hear the words
CANCER FREE
would ever mean so much!! We are so proud of you Devin!! We are proud of what you have done so far and what you will do in the future. God has big plans for you Devin and we know that the sky is the limit!!
Have a super day Devin!! You deserve it!! We love you so much.
Love, Mom and Dad
March 12, 2004
Thanks again to all of you who have stood beside us throughout this nightmare. We appreciate the phone calls, prayers, taking care of Kara, meals and JUST BEING THERE more than words can express.
At times like these we are amazed at how many people truly do love and care for our family. Your kindness and generosity have overwhelmed us. No words can express the thanks we feel in our hearts.
Thank you, Thank you; from our family to yours. We appreciate you all. Keep those prayers and positive thoughts coming. He still has a long road ahead.
Friday, March 12, 2004
Well I think I am still recovering from the news that Devin is CANCER FREE. I certainly wasn’t expecting such terrific news, but I will certainly take it!! I guess I truly under-estimated the power of prayer. Now I must beg, don’t stop just yet! He is still in treatment and will be for a minimum of 156 more days!! Please keep Devin and all of his buddies in your prayers.
Today I feel a little shell shocked from the news. Maybe even a bit wary. Randy seems a little more cautious today as well. The phones have been ringing off of the wall with everyone hearing the exciting news!! What news it was!! Cancer free!! We had no idea we would be given such terrific news. It was so much more than we were expecting. Devin had these same scans done in December, with not much change from his original scans. The first scans done in September lit up his body like a Christmas tree….cancer here and cancer there. Amazing!! Thank you, thank you.
Devin received a galliam scan and CT scans yesterday. The galliam scan lights up cancer in the body. Devin’s scan was clean!! The CT shows a very small tumor still in his chest. This tumor has shrunk approximately 95% from its original size, but is still there. Even though it did NOT light up the dr’s have to treat it as though it is cancer. All it takes is one bad cell to let cancer begin growing again. He will have to finish this treatment in order to truly become cancer-free. He is not at all thrilled with the prospect, but he realizes it is something that must be done.
What is next for Devin? Well, he will be admitted on Wednesday, St. Patrick’s Day, hopefully for his last inpatient chemotherapy. The last scheduled one anyway. He will begin delayed intensification which is due to last a minimum of 10 weeks. It is count dependent and he does meet the requirements, but we are waiting until after his big birthday to put him in the hospital. Some of the next drugs are not so fun, so it is good we were given the option to wait. It scans had taken a turn for the worse he would probably have been admitted today.
Delayed intensification actually is very similar to the very first phase he was on. It contains a lot of the same drugs, but hopefully he will not get as sick from them this time. The dr. said he should do better with them this time as he is in so much better health than he was at onset. Also, since he will not be dealing with the death of a large tumor while on chemotherapy he should tolerate the drugs better. I hope so.
Daunorubicin in the first drug given. It is a 48 hour IV. He tolerated it well the first time. It is hard on the kidneys so Devin was given a 12 hour urine test today to make sure his creatnin level is to their liking. Other drugs in this phase are vincristine (caused terrible jaw pain, headaches and foot drop last time), L-spar (horrible allergic reaction –will not receive again), dexamethasone(steroid-should dramatically increase appetite), cyclophosphamide(IV), cytarabine(made him really sick, counts drop), thioguanine (pill, new one) and methotrexate (only 2 LPs this phase).
Devin has had a lot of nervous energy today. Randy took him golfing this afternoon and said he was very rambunctious. I am sure he will crash hard tonight. It was a big day for him to find out he has no more cancer, yet still has a lot of treatment to go. He is tough though and is determined to keep fighting his way through this. We are so proud of all he has done so far.
He is very excited for his birthday tomorrow and the blood drive on Monday. He is hoping to go play miniature golf (weather permitting) with some friends on Sunday afternoon. Hopefully the weather will cooperate, he will continue to feel good and no one gets sick and we will get to go. He is really looking forward to it. I really that he didn’t over-do today so he is able to enjoy his birthday tomorrow. Happy Birthday eve Devin. I can’t believe you are turning eight years old.
Thursday, March 11, 2004 6:00 PM
Well, we couldn't have had a better day here if we tried. The doctor said the Galliam scan showed NO CANCER at all!!!!! I am still in shock. Just so thrilled that we are finally seeing the light at the end of the tunnel!!
The CT scan does show a tumor in his chest, but it has shrunk and is now only 5f its original size!!!! We are just so unbelievably happy. This is much better news than we could have ever hoped to receive!! These same scans done in mid December showed no real change, so to have such GREAT news is incredible!!
Devin will still have to finish out his treatments. He is scheduled to be admitted on Wednesday, unless a bed comes available on Monday. This will begin his delayed intensification phase. The dr. said it should be a lot easier on him due to the fact that scans are showing the cancer to be gone!!! Also, should be easier since he is so much healthier at this point.
We are just so happy to report such incredible, great news!! Randy hasn't wiped the smile off of his face, Kara is jumping up and down and Devin and I are still kindof in a state of disbelief: happy, but maybe a bit dumbfounded!!
Thanks so much to all of you that have had Devin (and our family) on your prayer lists. We appreciate each and every one of you!! Miracles do happen!!
We're off to celebrate our great news!! Thanks for stopping by to check on Devin!! Please sign the guestbook and let him know you stopped by!!!!!!!
Thursday, March 11, 2004
Thanks for stopping by to check on Mr. Devin. He is up and getting ready for his big day. We will plan on spending the day up at the hospital getting all of his scans done. It will be a big day. He seems fine with it. Luckily he doesn't fully understand how important these scans today are. He's just worried about getting to ride his bike again this afternoon!
Its been a busy day here already. The phones have been ringing off of the wall with friends hearing about Devin's blood drive on the radio this morning. KBULL 93's Tommy and Joe were nice enough to help promote the upcoming blood drive this morning on the radio. The response has been just great!! They even put the information on their website.
Sounds like lots of listeners have been calling in to sign up. This means so much to us. Thanks so much to all the people who take the time to donate. Devin is really excited to hear that so many people are signing up!! It makes him feel good to know that so many people will benefit from this blood drive!! I'm so glad that the Midvale Athletic Club was able to host the event.
Thanks for stopping by to check on Devin. Please keep him in your thoughts and prayers today as he gets these important scans done. We are certainly hoping to have nothing short of fantastic news to report to all of you this evening!!
Have a great day!! Please sign the guest book and let Devin know you stopped by!!! Thanks...
Wednesday, March 10, 2004
Thanks for stopping by to check on Devin. He has had another great day. He's been feeling good all day. Hasn't had much of an appetite, but he has had plenty of energy!
He had another guitar lesson this afternoon. He told me he is working on a song from Blink 182, "All The Small Things". I haven't heard him play much of it, but he's excited to be learning more. He really thinks that playing the guitar is cool! We got a catalog in the mail from Guitar Center today and he is already shopping for his "next" guitar. He certainly thinks BIG!!
Speaking of mail. Devin got quite a load of mail today. One of his friends from school, Ireland, sent him a really cool bubble wand today. She also sent Devin and Kara subscriptions to some really cool magazines: Your Big Backyard and Ranger Rick. Sounds like some good reading! The kids are super excited to start getting them in the mail. They also got cards from Archibalds for their free "birthday meals" today. They just love getting stuff in the mail.
After Kara got home from school the kids played outside on their bikes and scooters. Devin is still building up his endurance on his bike, but he loves being outside in the sunshine!! Luckily he is growing some hair back so his head isn't quite as shiny as it was a few weeks ago. He makes sure he always wears his helmet. He told me he doesn't want to have to go to the emergency room....me either.
Tonight we were invited over to grandpa and grandmother's for dinner. She fixed a really nice meal, but Devin didn't eat a bite....until we got to the main course: BIRTHDAY CAKE AND ICE CREAM. Now that is what he considers a meal. Six months ago I would have thrown a fit, now I am happy if he eats ANYTHING. He did enjoy that cake and ice cream. Glad to get a little celebration in before his big day...spread out the birthday fun.
Tomorrow is the BIG day. He will have all of his scans done and we will take a look at the big picture. We are both nervous. Really nervous. I don't know why I am so much more nervous than last time, but I do believe that I am. I am so hoping that this chemotherapy is doing its job. I know he has had some delays in his treatment, but we need for this to work. It is scary. Thank goodness Devin doesn't understand the seriousness of the situation. I am grateful for that. I feel like this cancer has stripped enough of his innocence away without having to worry to death about the scans. That's my job.
We appreciate you stopping by to check on Devin. He is feeling and looking so good. We all know what that means: time to hit him with some more chemo. It all seems so unfair, but we do what we have to do!!
Tuesday, March 9, 2004
HELLO, DEVIN HERE.....I thought I would give my mom a break and update my site myself!!
I am feeling very good today. I slept in, but when I woke up I was feeling GREAT!! I put on some of my favorite Aerosmith clothes and told my mom we should surprise my dad and take him out for lunch. He was surprised!! He is not used of me even eating lunch, much less picking him up for lunch. He took me to a brew pub. I only drank water. No beer for me. I'm not even 8 yet!!
It's only 4 more days until my birthday! I can't believe it. I hope my mom and dad get me some good stuff. The main thing I want is a Gamecube, Mario games and the Simpsons Hit and Run game. Also I would like a roadrunner gum ball machine. Maybe some cash would be good too.
My sister hasn't even bought me a present yet. I went to the store today to hang up one of my blood drive posters and bought her a makeup kit. My mom said it is just what she needs. She seems to already have a bunch of makeup, but what the heck.
Its almost time for my sister to come home from school. I'm excited to see her. I really miss that little girl when she's not around.
Thanks for stopping by to check on me. I'm feeling good and my mom says I'm looking good too!! I'm so lucky that so many people care about me. I really love reading all the messages that people send me!! Did you know I have friends all over the world now? How cool is that??
Make sure and sign my guestbook. You'll make my day!! Glad you stopped by.......Devin
Monday, March 8, 2004
Thanks for stopping by to check on Devin today. We've had a quiet day here. Kara had her dentist appointment this morning and was so good. She had to get two fillings and was just perfect for the dentist. Her main concern was getting back to school in time so she didn't miss recess.
Devin has been feeling good. I fixed him pancakes for breakfast this morning. This afternoon we made a quick trip up to PCMC to get injected for his galliam scan. The galliam scan has to be injected 72 hours prior to scan. All of the scans will be done on the 11th. It will be a big day as we will be finding out if all this chemo has been doing its job.
I got a call late this afternoon from the Make A Wish Foundation. They have received Devin's application from the hospital and it is now time to begin the "wish process". SLC has a new wishing place that we will visit when Devin is feeling well. They have a special wish game that the kids play to try and decide just what their wish really is. Devin is so undecisive; so hopefully the game will help him with his decision. Exciting to think about. I'm not sure exactly when Devin would qualify to fulfill his wish due to his treatment schedule, but it will be fun to start planning.
Devin got really excited when he saw the posters for the blood drive. They are REALLY nice with a color picture of Devin on them. The first blood drive will be held Monday, March 15, 2004 2:00 -- 6:00 at the Midvale Athletic Club. Devin is really excited. I took some posters to my neighbors to hang up at their work. I also need to get a poster to another neighbor to hang up at church. The blood drive was announced in our LDS ward on Sunday, so hopefully we will get people from the neighborhood willing to donate. Another blood drive is in the works for a later date. I'll keep you updated.
I still haven't heard an exact total on the fundraiser done at the school. The original goal was $2500. I do know for sure that the total was exceeded. The principal had challenged the students to double their goal. I'll post the total for the Leukemia Lymphoma Pennies for Patients fundraiser when it is available.
Another good day here at the Ross house. No emergency trips and looks like spring is on its way. Devin's counts are slowly but surely going UP, so he is feeling better.
Thanks for stopping by to check on Devin. Please sign his guestbook and let him know you were here!
Sunday, March 7, 2004
It’s been a great day here at the Ross house. The sun has been shining and the temperature has warmed up. Devin is feeling SO MUCH better than yesterday. He’s actually felt better today than any day since he’s been home from the hospital. He’s been eating better (mouth sores are finally gone) and just had a lot of energy.
One of Devin’s friends, Cecelia, came by with his birthday presents. She is getting ready to go to Florida with her family and will be gone on Devin’s birthday. The kids did some painting while the grownups talked. It was nice to see Devin having fun with his friend. It seems like seldom he feels like doing much of anything.
The kids played outside on the scooters this afternoon, then later took our two dogs for a walk. We were all tired out by the time we got home, so hopefully everyone will sleep well tonight.
Randy has just finished Devin’s dressing change, so we will get his last IV started and be off to bed. Home health will be out early in the morning to draw labs. Since we just had them drawn in the ER last night we are pretty confident that he will not need a transfusion tomorrow.
Tomorrow’s day includes taking Kara to the dentist in the morning and Devin to PCMC for his injection in the afternoon. Hopefully all will go smoothly and both visits will be short and sweet.
Report from Oklahoma is Nanny is sick with some type of flu stuff. She has been throwing up and in the bathroom all evening. Hopefully it will pass soon or she will be in the ER getting an IV. She wasn’t in that great of shape to come home, so she really cannot afford to get sick.
Just found out about the funeral arrangements for our friend tonight. Hopefully Randy and I will be able to get someone to watch Devin for a while so we can attend the funeral. It will be a hard funeral to attend, but I do believe we should show our support to Cody’s family. I know they are hurting right now.
Thanks for stopping by to check on Devin. I am happy to report he is feeling so much better today. It is nice to have a good day. We love good days around here! Let Devin know you stopped by: Please sign his guestbook!!
Saturday, March 6, 2004
We had a little scare with Devin today. He has been sleeping so much more and today was no exception. He finally got up close to 1:00 in a terrible mood. He was complaining of a headache and insisted he was not hungry. His face was swollen and his pupils were dilated. He just didn’t look right.
About 3:30 he decided he wanted to go back to bed. He still had the headache, I had been giving him lortabs, but evidently they weren’t working for him. By 4:00 Randy was home and agreed that “something was not right”. We called the oncologist on call and were told to bring him up to the emergency room. We packed a bag, took Kara to Holly and Kevin’s and headed up to the hospital.
Devin’s balance was off and his speech was not normal. He was talking nonsense; which was very scary. He is normally very “with it”, so this was completely out of character for him. We knew when we got to the hospital he would get a CT of his brain and/or an MRI. Scary to think about. Nerve-wracking actually. We do not need this cancer to spread. I had just had him in the clinic yesterday and the dr. mentioned that if he wasn’t acting more like himself by Monday they would be taking a look at his brain…just in case.
Luckily the ER was not busy and they were expecting Devin. He was sent for a CT with contrast. Luckily he has a central line, so no IV. He did great by holding still and sure enough we got the news we wanted to hear: PERFECT !!!! Nothing there that shouldn’t be there and NO clots.
Devin’s labs showed a slight decline since yesterday, but he was cleared to go home. By the time we got his results he was feeling and acting more like himself. He even ate a couple of bowls of fruit loops while we were waiting; so he was feeling much, much better.
The doctors are stumped at what was causing the problem. He couldn’t walk to get into the ER tonight, but was basically running out of the place. We were very relieved to see him in so much better spirits tonight. It feels good to know that his brain is clear. One less thing to worry about tonight. Hopefully he will continue to feel good and get some really great news on his scans later next week.
Thanks for stopping by to check on Devin. I’m happy to report he is feeling so much better tonight.
Friday, March 5, 2004
When I called and talked to the oncology clinic this morning they wanted to see Devin. For the past few days he has been sleeping so many more hours. Twelve to fourteen hours at a time. I can wake him up and get him to take meds, but he goes right back to sleep, like he has no energy or ambition. Not like Devin.
I got Devin dressed and talked him into eating a little yogurt before heading up to the clinic. He was not at all thrilled about going, reminding me that his teacher was supposed to be coming over. Glad he reminded me. I would hate for her to think we blew her off. Quickly called the school on the way out and left a message for her. Glad he has such a good memory, seems mine is full of blood results and drug dosages.
We arrived at the clinic before noon. He had his labs drawn again (drawn yesterday by home health) and we waited for results. He enjoys playing their nintendo when he is in the clinic. Anyway, the blood counts are still going down; probably due to methotrexate. They don't know for sure, but that is the best guess. They are guessing he will be eligible for a platelet transfusion after labs are drawn on Monday. We are already planning on being in the hospital Monday for the galliam scan injection, so why not get some blood while we're there.
Today's clinic visit was basically a "let's wait and see" type of visit. Wait until labs go lower to qualify for blood, and if headaches and sleepiness persist they will do an MRI on Monday. Of course, maybe its nothing. I wish all of their thoughts could be collected before throwing out scenarios at me. This cancer stuff is scary at best.
For now he has been put on IV fluids for the weekend. There is a real likelihood that he could get dehydrated because he is not up and drinking like he should. The dr has told me to increase his pain medicine and gave me some medicine for the mouth sores. His mouth is in sad shape. I can't remember him getting sores this bad before. Hopefully he will improve and feel better over the weekend.
Thanks for stopping by to check on Devin today. Please sign his guestbook and let him know you were here.
Friday, March 5, 2004
Good Friday morning. We got some more snow last night, so our crocus are hidden this morning. Hopefully the sun will be out soon.
Devin is sleeping in again this morning. He was complaining of a headache at bed time last night, but says his head is fine this morning. He just seems so over-tired. The clinic should be taking phone calls soon, so I will see if they would like to see him. The nurse yesterday said his counts are high enough right now that he could have something that hasn't really presented itself. It would certainly be nice to know BEFORE the weekend.
We got Devin's first honorary blood drive scheduled yesterday. It will be held on Monday March 15, 2004 at the Midvale Athletic Club. Devin is really excited about it. ARUP will be making up posters with his picture on them asking people to donate blood. Hopefully there will be a good turn out. I'm sure that Susan, the owner of MAC will do her best to get people to donate. She is really nice and is glad to be hosting the blood drive. Anyway, we are all excited.
Well, Nanny is doing better this morning. I talked to my mom and Nanny was going to be discharged this morning. Hopefully being in familiar surroundings will help her to feel more comfortable. I sure hope so. My mom will be spending the night tonight and we will hope for the best. I really don't want to think about the possibility of a nursing home, but it is a very real possibility. We will hope for the best.
Almost forgot. Today is Uncle's birthday!! Seems we have a lot of March birthdays in our family. A busy month. I would say an expensive month, but the truth is I haven't even bought my own brother a birthday card. Guess the kids and I will have to get busy. It is just so seldom that we get out of the house.....don't worry Uncle we WILL get you a birthday present!! Kara has some big plans for making you a belated "glittery" birthday card. I'll get her busy after school. Happy Birthday Jeff!!
Well, going to work on some more insurance and billings. We only received 5 medical bills yesterday, so a slow day. Glad to see that an old pathology bill from way back in September was FINALLY billed out correctly and paid. IT really makes me nervous to have all of these unpaid medical debts riding against my name, but really no other options. Thank goodness our insurance has been so good.
Well, thanks for stopping by to check on my little patient. I'm going to give the oncology clinic a call and see what the "plan" for the day is. Have a great day. Please sign the guestbook and let Devin know you were here!
Thursday March 4, 2004
Thanks for stopping by to check on Mr. Devin. Home health was in early for labs. Devin slept right through it...matter of a fact, he slept through most of the day. He has been sleeping an incredible amount since coming home from the hospital. Worries me, but what doesn't.
His labs are pretty good. Counts are dipping down, but no transfusions needed. I talked to the nurse about his total lack of energy and ambition. She thinks even though he doesn't have a fever or elevated blood pressure he may have "something" going on. She is worried about him getting dehydrated since he is not up as many hours and therefore not drinking.
He acts as though he is feeling down. She said if he is still sleeping so much tomorrow they will want to see him in clinic. There is just so much stuff going around that he could have picked something up. So, we'll be keeping an extra close eye on him.
Word from Oklahoma is Nanny is doing better today. She is acting more like her old self....all of 88..and realizes where she is and what is going on. A possibility the confusion could be from a mini stroke. Anyway, good news is she will probably be discharged tomorrow. Hopefully all will go as planned. My mom said it is raining like crazy there, so hopefully she will get a break in the storm to get Nanny home.
It was snowing when I got up this morning, but by the time Kara came home from school it was sunny and warmer. The kids got out their scooters and played around a little in the driveway. The kids noticed we have some tulips and crocus trying to peek out. Like Devin said, spring is just around the corner. Sounds good to me. I'm getting a little tired of the snow. Give me some tulips!!
We had another excellent meal from our neighbors Gypsy and Karen tonight. Homeade spaghetti and meatballs. But thats not all. I'm telling you these gals can cook! Garlic bread, salad and the fixins for banana splits for dessert (homemade hot fudge sauce). These two are amazing!! If you ever are hungry I'd say their house would be a good place to stop. Even brought Devin and Kara birthday presents since we are officially in "birthday month" around here. Cute little pocket radios. I know those will get a lot of use!! Good thing we keep a stash of batteries around here. Thanks guys!!
Devin is still not eating much. He did enjoy the garlic bread and ice cream though. His mouth seems to be feeling better, so he is getting a bit more adventurous with his food. Hopefully by tomorrow the sores will be a thing of the past.
Thanks for stopping by to check on Devin. He appreciates you all checking up on him and leaving him a little note in his guestbook. Good night!
Wednesday, March 3, 2004
I received word earlier this week that one of our friends was dying. I really didn't know what I could do, but thought I should at least try...you know, let him know I cared. I have become good friends with this child's father. It is amazing how you close you get to these people. His son's treatments are over. There will be no more chemo, no more radiation. He's only a kid..only 20 years old. He's dying, he's accepting it; but its certainly not fair.
His dad said that his son looked at Devin's picture and asked why???? Why? He's only a little boy. They are all just someone's little boy. Every damn one of these kids is somebody's baby. Cancer knows no boundaries. It doesn't ask any questions. It just takes away. A person can only handle so much and Cody has fought his fight. He has fought and now he is ready to be free of his pain. We can only hope now that his exit is peaceful. He deserves it.
Cancer is not fair. It grows until it is killed or contained or it kills its host. These kids are dying every day. It is so unfair. We have heard of several in the past few weeks losing their battle. It is hard to hear. These kids fight so hard. I pray that we never have the nightmare of losing the fight.
I talked to Cody's dad for quite some time. He told me he knew his son was tired. He hoped it would be peaceful. That is all we can hope for now. The fighting is done. He will most certainly be missed.
Wednesday, March 3, 2004
Well, quite a day. Devin has been completely wiped out from his party yesterday at school. He slept in most of the day. Finally got him up when I reminded him that he had a guitar lesson today. He's just really not been up to par.
Guitar lesson is only 30 minutes, but he was wiped out. Now I am really wondering what his counts will be tomorrow. Russ is coming out early, so I should have results by 9:30 or 10am. It seems like we are getting better at knowing when he is going to need a transfusion. We shall see.
I have talked to my mom off and on today. Not such a good day in Oklahoma. Nanny is not at all herself and very much convinced that everyone; including my mother is out to get her. So sad as she was doing so much better at bedtime last night. Something for sure is amiss, now to find out what it is. She is waiting for some type of brain scan, not sure if it is an MRI or CT, but whatever it is the machine is down. Hopefully it will be up and running this afternoon and maybe we can find out exactly what the problem is. One thing is for sure, she cannot go home like this. Like Nanny has always said, the golden years aren't so golden...a bit more tarnished. Sounds like she hit the nail on the head.
Devin has promised me he would eat a baked potato, so the spuds are in the oven. I know his mouth is really sore from the blisters. He hasn't eaten anything yet today, so hopefully the potato will work for him. It makes me nervous when he doesn't eat. He figures out that he can still function without food and pretty soon he is refusing to eat anything. The dr. prescribed me some marinol in case we run into this problem again.
I've talked to the blood drive person again today. We are still trying to work out some dates for an honorary blood drive. Devin is excited about this. He would like to donate blood, but for now he is strictly on the receiving end. Thank God for all the blood donors. I don't know where we would be without them.
Thanks for stopping by to check on Devin. He is really enjoying seeing who stopped by....please sign his guestbook. He is really enjoying seeing all of the names from all around the globe.
Wednesday, March 3, 2004
Devin told me tonight that hopefully when he grows up he will be a billionaire. He would like to pay these researchers so much money that they would have to find a cure for cancer. Great idea.
He also told me a really good joke. I think he made it up: Question:
What do you call a cow lying down?
Answer:
Ground beef.
Maybe I'm crazy, but I thought it was a good joke. He is a funny kid. I'm glad he has a good sense of humor because you certainly need one to deal with cancer. It is certainly a life altering experience.
I know that he has done better from day one than me or Randy. I can still remember him lying in the ICU after his dad had gone home in the early days...prior actual diagnosis. He told me he was worried about dad. I said, no, dad is worried about you...Devin knew that cancer was not good and knew his dad's heart was breaking, but he was worried more about how his dad was going to "handle" cancer than how he was. He has been a trooper since early on. We are so proud of him. He is just so strong!! Keep it up Devin.
Wednesday, March 3, 2004
Well, Devin is worn out from his party yesterday. He had a good time, but sure tired him out. I guess he is still feeling the effects of the chemo. This last drug stays in his body for about three weeks. Usually he gets the mouth sores while he is still in the hospital, but they showed up Monday night. Blood pressure is good though. The dr. wanted to keep him on the Norvasc at least until the methotrexate has cleared.
Still waiting to hear what the hospital thinks about the elevated LDH level. I have called for the admitting nurse three times now and she keeps "forgetting" to call me back. Hopefully it is the methotrexate.
Scans are still scheduled for the 11th. Devin will have to go in on the 8th for the injection for the Galliam scan. I asked home health about getting the meds for the Galliam, but they aren't able to get it. I guess we will make a drive up to PCMC. I'll have to find out if he gets the med in the clinic or in the radiology department. I cannot remember how that one works. I do know I am nervous about the scans. Very, very nervous. Luckily Devin doesn't realize the importance of these scans.
Well, thanks for stopping by to check on Devin. He is doing well in the world of cancer. Please let him know you were here by signing his guestbook.
Tuesday, March 2, 2004
Well Devin had an exciting day today. I finally told him last night about the surprise his class was planning for him: a birthday party! He was excited to hear that they were thinking of him. It seems so long since he has been to school.
He was a bit nervous to go. Most of the kids hadn't seen him since his diagnosis. His teacher had asked that he wear his Cat in the Hat costume from Halloween...we opted to go with the hat. I didn't figure he would want to stand out as the only kid with a costume and a mask. That would have been a sight! Anyway, he donned his hat and away we went.
Randy went with us. Good thing. It is hard to go into the school when you have been on the outside looking in. Devin was nervous. He is very aware of the germ potential. I was nervous. Seems like last time I included him in the general population he landed up sick, but we held our breath and went. He had fun. Took him awhile to feel comfortable, but it went just fine.
The teacher wanted to take a picture of Devin and the other little boy that the fundraiser is being held in their honor. She had all of the money (lots of heavy coins)in a plastic container that some of the kids rolled down the hall. They got it into place in front of the fundraiser signs and started taking pictures...then time to go...just one problem, the entire plastic container burst and money was flying everywhere! Took a picture of the kids cleaning up the money. Cute.
The party was fun. Consisted of some Dr. Seuss games, books and the kids asking questions of Devin. He was totally unprepared for this and was quite nervous, but he held it together til the end. I know I would have been nervous sitting up in front of a crowd of thirty people with my mask on answering questions about what I had been doing. I really felt sorry for him. He is usually a little better at public speaking, but he usually practices what he is going to say beforehand. This was totally impromptu.
Anyway, left the school and came home. He basically collapsed; mentally and physically. Just worn out. Now I just hope tomorrow will be a quiet day. I'm sure he will need it.
Monday, March 1, 2004
Devin has been upbeat and happy all day. Not eating much, but certainly acts like he feels good. No more blood work until Thursday, so hopefully we will have a very quiet week.
His classmates are having a surprise party for him tomorrow. It is in celebration of his upcoming birthday and Dr. Seuss' 100th Birthday. He has no idea. I am afraid if I say something about it I will jinx it for him.
Hopefully he will wake up tomorrow and feel great. This is what we hope for, but not always what we get. Its kindof a play it by ear situation. We prepare for the worst, while hoping for the best. Anyway, hoping he can make it. Sounds like all of the kids are really excited about him "coming to school". He hasn't been there since...I don't know when. A long time ago.
Devin's teacher called me this afternoon with the totals on the Leukemia Lymphoma fundraiser. The total through today is $3829.29. Quite a bundle of change from school kids. Devin was very impressed to hear the total.
Thanks for stopping by...oh, and for those who came to see what Mrs. Clark named her baby...no such luck. She's still pregnant...Kara was VERY disappointed. Hopefully she will have a snuggly baby boy very soon. I'm sure she is rather uncomfortable by now.
Please sign his guestbook......let him know you were here!!
Monday, March 1, 2004
Another uneventful day here at the Ross house. This is good. I have had so many reports today of friends kids in not such good shape. It is hard to hear about these sick kids and not wonder why? Let me tell you cancer is mean. We've been having good days, but many of these kids are not so lucky today.
Hearing that your friends are in pain is hard, but to hear they are probably not going to make it is torture. We have a good buddy tonight who is there. He has put up a good fight and I'm sure he is tired. I cannot imagine how his parents are feeling right now. I feel so sorry for them. The truth is, this could happen to any of us. There is no fine dividing line in the cancer world. Its not fair, but its the truth. Cancer is mean and it has no boundries.
We are scared as hell about our upcoming scans. This will be pretty much a half way point in our treatment. We will have a decision to make depending on the scans. We are hoping it will be easy, that we can stay, but if we have something "new" show up, we are willing to go and try something different. We have absolutely no choice but to get the best possible treatment for Devin. If I didn't think I was doing the best by him I certainly wouldn't be able to live with myself.
Cancer is sneaky and mean. Devin will beat this. He will. He is tough..................he will do it.
Monday, March 1, 2004
Happy Monday. Thanks for stopping by to check on Devin. He really slept in today. I think his sledding adventure yesterday just about wore him out. His endurance just isn't what it used to be BC (before cancer). Anyway, he did have fun playing in the snow. He actually did better than I thought he would. Never ceases to amaze us.
I got his counts from home health this morning. They look pretty good. Much better than I was expecting for sure. I guess the blood transfusion on Friday really did help him out. I was certainly expecting lower numbers, but so happy they are up. I know he still has a lot of methotrexate in his system so they could drop, but for today he is good. Pleasantly surprised!
Still waiting to hear from the hospital nurse. I know his LDH level is running high today. I would like to know if this is from the methotrexate still being in his system, or from "something else". Hopefully the dr. will tell me what I want to hear. We want only good news from here on!
We are set up for scans on the 11th. This will be a big day for Devin. No MRI this time as his clots are gone, but will be going through all the others. It's hard to think of anything else besides the scans. They are just so important. Everything is hinging on the results of these scans. Nervewracking to say the least.
Dev is just being lazy today. Has not been interested in eating, but not complaining either. Last night he asked for his anzimet, hopefully today he will feel fine without it.
Nanny is hanging in there. The doctors just may have her figured out and home before we know it. It will be good to get her straightened out and back home if possible. The dr's seem to think that is a possibility. Just have to see how it goes today.
Well, enough for now. Not much real news to report, but that is fine with me. No news in this case is good news. Until next time...
Sunday, February 29, 2004
Happy Leap Year!!
Another quiet day here in snowy Utah. We have about 10 inches at our house now, so Randy was busy this morning shoveling. Never got out to make a snowman, but did take the kids for a little sledding. They both had a good time, but are worn out tonight. I think we are due for more snow over the next few days. Hmmm...maybe I'll have to put Devin to work making up a new soup recipe.
We have enjoyed our day today. Devin asked for his nausea medicine this morning, but hasn't complained. Mainly just snacked around...no real meals. Maybe tomorrow he will be hungry. You just never can tell. His next round of chemo will put him back on steroids for a few weeks, so we know for sure he'll be eating then!
Russ called tonight and will be here in the morning to do labs. It will be interesting to see what Devin's counts are doing. I am sure they will be low, but hopefully not low enough to warrant a transfusion. If we have to get a transfusion we have to make a special trip up to PCMC for a clot tube to be drawn, then go up the next day for blood. Not something I have in my plans for this week. Plan on an uneventful week. No hospital!!
Well Kara will go back to school in the morning. She is excited to go back. Her teacher was having a baby on Friday so she is anxious to hear what he was named. Guess you'll have to tune in tomorrow for the big name announcement. Anyway, she is excited.
Devin and I stayed up late last night goofing off. He wrote a letter to Aerosmith and is also working on another letter to his favorite author, Mary Pope Osborne. He just loves the Magic Tree house books. He wrote her last year and got a response so hoping she will be so kind again. He has an idea for a book for her to write. You can only guess what it would be about....you guessed it, one of those kids gets cancer. I'm sure he could be a wealth of information for her. She publishes research guides that tell how she has obtained her information for her books. She could talk to Dev and some other oncology patients and skip the "real deal". Most of her research guides tell of her trips to Hawaii, etc., so I am sure a trip to the oncology department would not be quite as luxurious.
We are still waiting for some positive news about Nanny today. She is very awake, but very unaware of reality. I'm not sure if this is a medication problem, but hoping the doctors can get her figured out. I can only imagine how horrible it must be for her to be so scared right now. Hopefully tomorrow will be a better day for her. I have talked to my mom several times today, but still no for sure as to what will be done. Hard to know what to do. Right now just wishing for the best.
Trying to finalize our taxes tonight. I thought we would wait until April 14th, but Randy has other ideas. Who knows maybe we'll get lucky and get some money back. Wonders never cease. Also, trying to sort through these stacks of medical bills and determine just what we owe. Better give my insurance case manager a call in the morning and make sure I don't pay someone I shouldn't. She is great...very funny, very good sense of humor. So glad to have another person on "our side".
Thanks again for stopping by to check on Devin. Please sign his guestbook and let him know you stopped by. Better go and get some kiddos to bed. Until next time...
Saturday, February 28, 2004
Quiet day here at the Ross house. Quiet is good. No trips to the hospital, no bad phone calls from Oklahoma...all is good.
Thanks for stopping by to check on Devin. All is well. He is feeling good and he and Kara have been having a fine time together. They really miss each other when they are apart.
We went over to our neighbors to watch Spy Kids in 3D. The kids hadn't got to play with Harrison and Sam in awhile, so they were all glad to see each other. They all looked so cute sitting there with their 3D glasses. Good thing the movie came with four pairs!
We have been racking our brains trying to think of "safe" birthday party ideas for Devin. We are hoping he will not start his next treatments until AFTER his birthday, which is only 2 weeks away. He is used to big birthday celebrations, but this year will be different. We will go a lot smaller with very few people...by this time he should be building back up, so may just feel human on his birthday. Seems like we just get him feeling good when it is time for more chemo. Chemotherapy is no fun anyway you look at it.
Kara is wanting to have a swimming party. We have been trying to talk her out of it. The dr. said absolutely NOT to Devin swimming. I kindof figured we would get a big NO on that, but didn't hurt to ask. He could run into some big problems if he got a serious infection while on his next round. Heck, I don't know, maybe he will be inpatient on her day. We will see.
No real news from Oklahoma. First Nanny is talking sensibly, the next she is in her own world. They will keep her in ICU over the weekend to see what they can figure out. One thing is for sure she has been very sleepy. Worn out. Hopefully tomorrow will be a better day for her.
Not much else to say except thanks for stopping by. The positive energy and prayers sent our way have been great. It seems ever since we set up this website Devin has felt so much better. Thanks to you all. Please make sure and sign his guestbook so he knows you stopped by....he loves reading all of your messages.
Until next time...
Friday, February 27, 2004
We got Devin's level back about 4:15pm......0.10!! Great, just need to get tanked up with a unit of blood and we will be on our way!
Devin received his 20th unit of blood this afternoon. Thanks so much to all of the people who take the time to donate. It is amazing how much blood a kid on chemo needs! We are so grateful for all the people who take the time to donate. What a gift!
It was so nice to leave the hospital with the thought of not coming back until March 8th. How exciting. We will certainly miss all of our friends while we are away. It is wierd that even though we want to come home we miss so many people when we are away!! It almost seems like we are turning our backs on them, leaving them there. We will be back soon enough.
Well, Dad and Kara took Grandma to the airport about the time Dev and I were leaving the hospital. Quite an interesting day. All of the anticipation to leave the hospital, then to have grandma gone before we get home. I sure hope nanny is okay. She is one tough lady. A lot stronger than she looks for sure!
Another new kid tonight when we were leaving the ICS. So sad. It seems like only yesterday I was in that mom's shoes. I know it SUCKS and it seems to get worse before it gets better....all of the uncertainty and urgency is very unsettling. I wouldn't wish this experience on ANYONE.
I can say that while I hate this cancer I do believe that we will have a good end result...meaning Devin will be cured. Of course it doesn't happen overnight and the road is long, but he is tough and he will get through this. He is stronger than cancer. We are stronger than cancer...hell, we don't have a choice. He will beat this!!!
Thanks for your thoughts and prayers, until next time...
Friday, February 27, 2004
Well Devin is still in the hospital. His level was checked at 6am, but it was still 1.26. The level needs to be 0.10 before he can go home. They re-checked his level again at 2:00, but we are still waiting for results.
His CBC was pretty good this morning. His counts are starting to drop from the chemo, but that is to be expected. His hematocrit is low, so he is waiting on a unit of blood now. He just got his premed for the blood, so it must be on its way up.
He has been feeling good again today. Not as much of an appetite, but still eating. His energy level is good and should improve with the trasnsfusion.
We found out this morning that Nanny, his great grandma in Oklahoma was admitted to the hospital this morning. The dr's think she has had another heart attack. Devin has been worried about her today. We're not sure is Grandma Gwen will be flying out tonight to help her. We are still waiting on some tests to come back from her doctors.
Please keep our Nanny and Devin in your thoughts. Thanks for stopping by....until next time.
Thursday, February 26, 2004
Hello from PCMC 4404
Devin is having another great day. His methotrexate level was checked at 1:30 and was 1.9. He needs it to be 0.10 or less to be discharged, so he is still connected to an IV and being urged to drink!!!! He will be checked again at 6:30am to see if he can be discharged...keeping our fingers crossed.
He has been in good spirits today. He was especially excited to see that his poem about cancer has been published in the hospital's newsletter. A proud moment for him.
The doctors say he looks great. Actually I think he looks better than great...he looks like he feels so much better than he has in so long. It's good to see the "old Devin" shining through. We definetly take the good days when we can get them.
I'm just glad he is such a tough kid. Now that he has finished this last methotrexate without incident he will be moving into his next phase. The count requirements are higher; platelets 75, ANC of 750, so it will probably be about 3 weeks before he qualifies. Luckily we have home health that will come out and do CBCs until he is "ready".
Nothing but good news today.....thanks for stopping by to check on Devin. He certainly appreciates all of the prayers and positive thoughts being sent his way! Until next time...
Wednesday, February 25, 2004
Devin has had one of his best days in a while. He has been up smiling and acting like he did in his days before cancer. It is so good to see a smile on his face. He was laughing and just genuinely enjoying himself. It seems like these good days are so few and far between that we don't want them to end.
We enjoyed watching Wayne's World again....I don't think he will be tiring of this movie anytime soon. He was ready to watch it again with dad when I left.
Dad brought Kara and Grandma up and Devin took a break from eating his new favorite: bbq potato chips to take a ride on the IV pole. He and Kara think it is great fun to jump on the pole and take it for a run down the "vending machine hall" on the 4th floor. Devin grabbed some goodies from the snack machine and headed back to his room, IV beeping.
Randy got him into the shower and got his dressing changed after I left. He said that Devin was still in a great mood ....he hates dressing change night because his skin is so sensitive from the adhesives. Randy said his chemo finished at 9:10pm...so machine is still a little off. Now the wait begins.
Devin has been trying out new drinks at the hospital. Mixing all of their selections of sodas together to come up with just the right concoction.......I came up with this game to get the kid to drink, drink, drink.....drinking LOTS is his ticket out of there!! Or, as Devin now says, "to bust out of this taco stand".....(thanks Steve)
Great, great day for Devin. We certainly take them when we can get them. It seems like it is always so touch and go up there...all these great kids in such horrible circumstances. Today we are thankful it was our turn to have a great day...one day at a time.
Wednesday, February 25, 2004
Good morning from room 4404 at PCMC. Nice room with a great view of the courtyard and front entrance. Of course Devin wouldn't know, he has basically been sleeping since he got into a room.
He got his methotrexate started last night at 7:10pm. So far, everything is going just great. He has been pre-medicated with tylenol and benadryl, so very sleepy. We had a great nurse last night. She woke him up every 2 hours to go to the bathroom, but other than that just let him sleep.
He woke up this morning in a great mood. We played hospital bingo...and guess what, he won. (Everyone wins at hospital bingo) Anyway, we are now watching the old "Wayne's World" movie. He likes it. He likes the music..I knew he would. He loves rock and roll.
Hopefully things will continue to be smooth sailing up here. The IV should stop around 7 tonight, then we will just be waiting for his meth. level to drop.......that truly is a waiting game. We've had it drop in as few as 3 days, but also take as long as a week. We'll just have to keep our fingers crossed that he clears quickly so he can go home.
Thanks for stopping by to check on Devin. Thanks for all of the well wishes sent his way! Until next time...
Tuesday, February 24, 2004
Quite an exciting day.
Devin had a dental appointment at the hospital. His regular pediatric dentist was out of town, so we were referred to the hospital clinic. We arrived on time and after waiting for 30 minutes the dental assistant informed me that he would not be seen because they did not want to just see a patient once, then have them go back to their regular dentist!! What? I explained the situation to her, but she refused to listen. Finally I asked to speak to the dentist who brought Devin straight back for another cavity free check up!
After the dentist we headed up to the 4th floor to the ICS unit. A room was not yet available so we were told to come back at 2pm. Devin and I left and went to Quizno's to get a sandwich. We drove around trying to pass the time. I knew if we went home it would be close to impossible to get him back in the car. We decided to go get the new Spy Kids 3D movie and headed back to the hospital.
We arrived in the admitting office a little after 2pm. We were told that there was still no bed for us, but ICS would let us use the "treatment room" until a real room was available. Fine. We signed the paperwork and headed upstairs.
The treatment room was just fine...just one problem, no bathroom. Devin's urine pH has to be 7 or greater so everyone was really anxious for him to go to the bathroom. He was hooked up to IV fluids upon arriving and within a half hour was headed down the hall to the bathroom. Great. We are off to a good start.
Not so great, the nurse "forgot" she was supposed to take the pH and flushed it all. Not very happy....anyway, try, try again.
Ordered a little dinner, which Devin determined was inedible. He did eat his dinner roll and requested another. Bathroom break again...this time pH is taken: 7.5. Perfect.
5:30 we are told we will start the methotrexate. 5:31 I ask about his normal pre-meds.......news to them....Ok, so pre-meds are ordered.
6:30 our luxury suite is available...one problem, no bed. We take the bed from the treatment room across the hall. Ok, great, ready to start. Pre-meds given. 7:10pm is the official start time.
Dad, Kara and Grandma come up for a quick visit. Devin is getting VERY sleepy from the pre-meds. He gives Kara a quick hug and is ready to go back to his room. I get him changed into some jammies and he is OUT before 8:15. Sleeping soundly, blood pressure is still great.
He will be up every 3 hours during the night to check his output and pH, but hopefully he will get to sleep through most of the 24 hour IV and skip the nausea. Keeping my fingers crossed.
Thanks so much for stopping by to check on Devin.
Tuesday, February 24, 2004
Well, here we are the 24th day of February. Devin is scheduled for a dentist appointment at the PCMC dental clinic today at 11 am. The last I heard the ICS unit is full, so we won't know until this afternoon if there is a bed available.
I am packing up with the "hopes" of being admitted for chemo, but it all hinges on bed availability. We shall see.
Dev is still sleeping, so not much to report there. He has requested I take his new favorite: Chips Ahoy with chocolate chips with us to the hospital. He eats so few things these days. These cookies just happen to be one of them.
We went to Famous Daves last night for dinner. He always eats well there. We talked to the manager about making a donation to Dev's school for the Leukemia Lymphoma society. He said he would have to forward the information to his "general manager", so we won't be counting on that one.
I haven't heard from Devin's teacher since before the weekend so I don't have any new totals to report. I do know that the principal had challenged the students to double the original goal of $2500. We will see what happens.
It is so funny to think about these fundraisers. I don't know how much money I have given to "Pennies for Patients" and St. Judes in the hope WE WOULD NEVER HAVE TO USE THESE FACILITIES. Seems like my investment plan did not work out. I just hope we can get this chemo to do its job so Devin can get back to his job of being a kid!!
If admitted this will be Devin's last dose of high dose methotrexate. He will officially be done (except for the LP he missed due to RSV) with interim maintenance. He will be moving on to delayed intensification. Wish him luck!! He's still got a long row to hoe!
Until next time...
Monday, February 23, 2004
Thanks for stopping by to check on Devin. Luckily he woke up about 6 pm last night feeling 100etter. No nausea, no headache. Great!
Russ came this morning and took his CBC and did a cap change. Devin pretty much slept through it, or so I thought. The moment Russ was out the door Devin was up and jumping around like a monkey. He brushed past Kara and went downstairs to work on yet another Lego masterpiece.
Home health called around 11am with lab results. I was pleasantly surprised with Devin's numbers. His ANC was 1247, platelets 211. White blood cells are up to 2.9. Wow...some of the best numbers we have seen in awhile! Looks like he can finally go to the dentist!! Hurray! He had to miss his last 6 month cleaning in December due to low counts. This is the first time this year his counts have been good enough for the dentist!!
Called the kids' dentist. He is out of town, the dr. covering for him is working at PCMC dental clinic today. Our family dentist is out.......counts are FINALLY up and we can't get a dentist. I'll call up to PCMC and see if I can get him in up there. He just needs his check-up, but he needs to be premedicated before he has any type of exam done. I'll see what I can find out.
Talked to Dr. Lemons this morning. He wants to skip the LP tomorrow and just bring Devin in for the high dose methotrexate. None of the anesthesiologists want to put Devin under due to his recent diagnosis of RSV. Lemons says we can make up the LP at a later date since Devin has already had so many. We will wait for a call from ICS in the morning to see what time Devin will be admitted. Wait, wait, wait....we are very good at playing the waiting game around here.
Until next time....
Sunday, February 22, 2004
Well, we finally got word about Devin's treatment for tomorrow. We called on-call and were told that his appointment in the RTU had for sure been cancelled. His name was no where on their schedule for tomorrow; so no admission tomorrow.
The doctor asked me how Devin was doing today. I told him that he had woke up and began throwing up. He said it sounded like he was "getting something", so we would cancel everything for tomorrow. He said if Devin's counts are good tomorrow and remain up that maybe an anesthesiologist would agree to put him out later this week for the lumbar puncture. We will find out more tomorrow after labs are back. Who knows with this new "bug" if Devin will even qualify. Each time he gets sick it drags his counts down. His last counts were artificially high due to the nupogen shots. We will see.
The doctor on call was talking about NOT skipping the LP. He said it is very important to do the IT methotrexate (lumbar puncture) with the high dose IV methotrexate. We will see what anesthesia says. Devin has always been sedated for the procedure. If we must wait the 6 weeks his treatment could possibly be delayed until March 19. This is a long time! His last admission for chemo was February 3rd. It is scary to have these delays.
Devin has been feeling awful today. He has been out of bed only to throw up. He has been sleeping most of the day and had complained of a headache earlier. Hopefully the rest will do him good. We worry about him getting dehydrated from the throwing up, but luckily his temperature has been normal all day. If he is not able to keep liquids down we will most likely have to call and get an IV sent out.
It is so touch and go with cancer. It seems like one day he is up and running around; the next he can barely move. He had such a good day yesterday. I could have figured that he was going to be tired today, but certainly could not have anticipated the throwing up. It was nice to see him having a good day yesterday. Hopefully he will be up and running around again soon.
Thanks for stopping by to check on Dev. Make sure and let him know you were here by signing his guestbook.
Sunday, February 22, 2004
Happy Sunday to everyone. Devin is still sleeping soundly this morning, so not much of an update. I did wake him up to take his morning meds and take his blood pressure. His bp was normal. This is good. I can't believe he is still able to sleep with the smell of bacon in the air. Who knows, maybe that's what is keeping him in bed. Every day is different.
Well, we are still unsure as to what the real plan is for tomorrow. The girl in the RTU said she was going to cancel Devin's Monday appointment, but she also said she would call me back and let me know what Dev's dr. said. So who knows.
Our plan is to get things packed up as though we are going to the hospital tomorrow. This will mean Devin is NPO tonight, so hopefully we can get him to fill up before midnight. Of course the entire plan of admission is based on his bloodwork tomorrow morning, which luckily will be drawn at home.
It is amazing that these people can leave us hanging like this. The hospital's motto is "The Child First and Always". I have to remind myself of that saying because at times like this it certainly does not ring true. Cancer is frustrating enough without the added aggravation of not being called back to know what is happening. It is not fair to make Devin be NPO if the procedure will not be done. Does anyone care if he is NPO for no reason except for us? Sure seems that way.
This is not the first time we have been left hanging, waiting to have answers. Guess it is time to have another big pow-wow with the dr's again. It seems throwing a fit is one sure way to get their attention...at least for awhile. It makes me mad that there is so little continuity between the departments. It saddens me that we have to get "mean" to get the proper treatment, but we do what we have to do.
Hopefully Devin will be up in awhile and we can get him out of the house. He always resists, but if he is feeling good at all he will enjoy the break.
Thanks for stopping by..don't forget to sign Devin's guestbook while you are here.
Saturday, February 21, 2004
We've had a good day here at the Ross house. We talked Devin into going bowling with our local Candlelighters group. He woke up and said he didn't want to go, but we talked him into it. It is so hard to get him out of the house these days.
After a few gutter balls, he finally got the hang of bowling and got a strike. He was so happy. Kara got one too, so did mom and grandma. Dad didn't get to go..working again. Dad is trying to play "catch up" at work before he takes off for Devin's planned admission on Monday.
Randy was planning on meeting us at the bowling party, but Devin tired out quicker than we thought. We just played one game and had to call it quits. They had pizza at the party and Devin ate most of a piece. He had fun talking to one of the helpers there. He told Devin that he used to have cancer too. Devin thought it was neat to talk to someone who knew what it felt like to have had cancer.
I think the realization of how weak he is came to light today at the bowling alley. His physical activity has been so limited due to just not feeling good a lot of the time. It was nice to have a new friend to tell him he understood.
I'm going to find out this guy's name and see if maybe he could be someone for Devin to talk to about cancer. The child life specialists at the hospital are great, but as far as I know they have not personally experienced cancer.
Randy called just as we were leaving the bowling alley. He was planning on coming to bowl with us. I told him that Devin was tired and we were just leaving. We decided that we would stop by the ribbon cutting ceremony for "The Wishing Place". It is the brand-new building for the Make a Wish Foundation. We just stayed a little while, as it was crowded and Devin was tired. We will be going back someday when it is time for Devin to pick his "wish".
We talked a lot about Devin's wish tonight. He is so undecided. One minute he wants to go to Disneyworld to ride Aerosmith's rock'n'rollercoaster again...the next minute he is talking about getting his own airplane. When he dreams he does dream BIG. I know that someday will be Devin's day to make a wish. I have talked to many parents at the hospital who have had their children's wishes granted. It just sounds like an incredible program.
Today was a big day for Devin. I'm glad he had a good day. It is nice to get out of the house and join society. We are hoping to get him out again tomorrow before he has to go back in the hospital.
Sometimes I feel like we are living in our own world and only those who are right in the midst of it know how fragile we feel. I miss my friends at the hospital and wonder how they are doing. Do I really want to know? Yes and no. It seems like we are all living on the edge, but the reality of it is we have today. That is all any of us have.
Here's to an even better tomorrow!
Friday, February 20, 2004
Thanks for stopping by to check on Devin today. He is feeling ok. He hasn't been as energetic today as the past few days, but he has been up playing around the house. He still has a little bit of a cold, but it hasn't seemed to slow him down too much.
The RTU called late this afternoon about his Monday afternoon appointment. They proceeded to ask me the normal questions they always ask: allergies, reactions, etc. She then asked if he had any cold symptoms. I told her that he still had a little cough, probably left over from the RSV. She asked if he had the "official" RSV test....he had....so she informed me that the RTU DOES NOT put kids "out" for 6 weeks AFTER they are diagnosed with RSV.
If this is indeed the case, our plans for admission on Monday will be cancelled. As of this evening I have not heard back from her. She was going to call the oncology clinic and talk to them about Devin. I'm sure that we will not know anything until Monday now. This really makes me mad, as the admitting nurse in the ICS should have known about this. Anyway, we will just have to "wait and see" if he will actually be admitted. I hate the suspense.
On a brighter note we received an e-mail from Devin's teacher regarding the Leukemia Lymphoma fundraiser. The current total is now $2623.22. The original goal was $2500, so they have done great! They have decided to extend the fundraiser and see if they can double their money. Hopefully they can get some businesses to donate. I have left fliers at several businesses around our home with the information.
Devin and Kara are excited for tomorrow. We are going to go bowling with the kids from Candlelighters. They both love to bowl, so if Devin feels good we will mask him up and go! Kara is excited to maybe meet some new friends. She acts more excited than Devin. I'm sure if we get to go they will have a great time. Keeping my fingers crossed.
Thanks again for stopping by. Don't forget to sign the guestbook and let Devin know you were here!
Thursday, February 19, 2004
Well, we received Devin's labs back this afternoon. Once again he did NOT qualify for chemo. His ANC is still not up to par (400), but all of his levels have improved from Tuesday's labs. He needs an ANC of 500 and platelets of 50 for this phase of chemotherapy.
For the next 2 days we will give him 2 doses of nupogen to see if we can get his blood up where it needs to be. His cold seems about the same, so if we can keep it from getting worse we should be a go for next week. Labs will be drawn early Monday morning.
We have been officially scheduled for an RTU appointment this coming Monday at 1:00. If labs are up to speed he will receive his LP of methotrexate in the RTU, then be admitted for his final dose of high dose methotrexate. This means NPO Sunday night.
I talked him into getting out of the house this afternoon. We got some valentines finished that he was wanting to pass out to people at the hospital. Due to the re-admission after his last chemo we are running just a little behind schedule. Oh well.
He said that Sweet Tomatoes sounded good for lunch. He loves their chicken noodle soup and pizza, so off we went. He ate pretty well, then decided he was tired....not just tired of eating, tired. He was ready to go home and take a "break". He threw up on the way out...luckily he made it to the parking lot. He wiped himself off and said it sure tasted better going down. At least he has a sense of humor about it.
He is still complaining of a stomachache since getting home. His sister is home and they are having a good time together. He was really excited because not only did she make 100n her spelling test today, but also 100n her math sheets as well!! Way to go Kara. She sure seems to do better with her school work when he is home, rather than in the hospital.
More good news today. Devin received word from the hospital that they will be using his poem for the big Dr. Seuss 100th Birthday celebration. He is hoping they will print his picture with it as well. We will see.
Thanks again for stopping by to check on Devin. Please make sure and sign the guestbook so he'll know you stopped.
Wednesday, February 18, 2004
Thanks for stopping by to check on Devin today. He has been having another great day with seemingly limitless energy. He has been jumping around like a monkey most of the day. Feeling good.
We had some of his favorites for dinner; barbeque pork, baked potatoes and corn on the cob. He ate and acted like he enjoyed it all. We hadn't seem him eat that well since he was on prednisone, so it was a nice improvement. No nausea, no complaints...just came to the kitchen and enjoyed a meal with the rest of us.
He was given another nupogen shot tonight. This should give us some nice results for tomorrow's blood draws. Russ will be out in the morning to do labs. I am so grateful for home health. Without them we would be making a trip to the hospital each and every time Devin needed a blood draw. They have truly been a lifesaver.
Got an update on the fundraiser from Devin's teacher this evening. So far the school has raised $2386.88 for our local Leukemia Lymphoma Pennies for Patients fundraiser. Wow!!
Plan on checking back tomorrow for more good news about Devin.
Thanks again for stopping by. Please sign Dev's guestbook. He loves checking his messages.
Wednesday, February 18, 2004
Thanks for stopping by to check on Devin today. It has been another good day here at the Ross house. Devin has been in a great mood all day.
I was surprised to get his blood counts back this morning. Counts have really dropped since they were last taken on February 13th.
His ANC today is low at 210...this is down from 1100, so quite a drop. He needs to have an ANC of 500 and platelets of 50 to qualify for this phase of chemotherapy. Platelets are down to 35 from 62....so his bloodwork has gone south on us.
Still he continues to have a lot of energy and is having fun practicing his guitar and reading some books he checked out at the library today. He surprised me by checking out some World War II books today. Seems his interests in reading are constantly changing.
His doctors wanted us to give him a nupogen shot tonight and tomorrow night. They are hoping this boost will at least get him through his lingering RSV symptoms (mainly just a cough and runny nose now). He will have to get his counts up on his own before he is eligible for chemo again, so who knows when he will be re-admitted. We are already way off schedule.
He didn't even flinch when I gave the shot tonight. He hasn't had one in a few days so he doesn't look so bruised. I'm sure stopping the lovenox on 1-12-04 has helped eliminate the bruising as well. I certainly don't miss giving those twice daily injections. Glad they worked, but don't miss them. I know Devin is glad they are a thing of the past. He wanted to throw ALL of the needles away as soon as he found out his clots were gone...no such luck.
For now we are hoping Dev can knock this cold/RSV and get his counts up. As much as he hates chemotherapy he knows that it is what he needs to beat this cancer!!
Good news tonight when checking the e-mail, got a message that a picture of Devin and Steven Tyler of Aerosmith (from the October concert here in SLC) has been posted on the website. Too cool. Devin was SOOOOOOOOOOOO excited to see himself on the Aerosmith website for all the fans to see. Thanks again to Aerosmith for an unforgettable night.
Check out Devin on the "official" Aerosmith website at:
http://www.aeroforceone.com/cm/index.cfm?ac=fan_reviews
Too cool. Thanks for stopping by....please make sure and sign his guestbook.
Monday, February 16, 2004 8:04 PM CST
Hello and thanks for stopping by to check on Devin.
Today has been an exceptionally good day for Devin. He requested pancakes for breakfast and surprised me by actually eating them. We had Kara home due to the holiday and they are really enjoying their time together. It certainly is good to see them "getting along". When he feels bad that is next to impossible, so today is good.
Devin and I stayed up late working on a "Seussical" poem for the hospital. His is about cancer and is really cute and sweet. It's amazing what he can do when he puts his mind to it.
Grandma is sick today so we decided we would quiet the house and get "out" for a while. She slept most of the day so I don't even think she had a chance to miss us. Seems all of us have had some kind of bug we have passed back and forth for the past few weeks.
I had scheduled Devin a guitar lesson for this afternoon, so he was excited about that! He hadn't been able to schedule any lessons since he was diagnosed back in September. He is really excited about learning to play that new guitar Santa was so kind to leave him this Christmas.
We went by the gym, Club MAC, to see what was going on down there. It seems like years since I've been in the place. It was nice to be recognized still after all of these months. We talked to Susan the owner and asked about the use of her facilities for a blood drive. She was very excited about the prospect of doing it. Devin was excited. Its things like this that keep him smiling.
We made a "field trip" to the local Red Cross. Not only did Devin and Kara get to see some people donating blood, but we also got the wheels in motion to organize a blood drive in Devin's honor. He is very aware at how important blood donation is. Since his diagnosis on Sept 19, 2003 he has been the recipient of 19 units of whole blood, plus several units of platelets, plasma and cryoprecipitate. He was feeling really good and really excited about the possiblity of having the drive on his birthday on March 13th. We will have to see how everything works out. I am just happy that we had a day that he actually felt good enough to leave the house and "get some things done".
Tomorrow morning will be another CBC. Russ called and he is feeling much better, so he will be here a little before 8am. Hopefully I will get the labs back by ten or so. This CBC will tell us if Devin's body is building back up on his own, or if it is coming back down (due to stopping the nupogen). Since he still has signs of a cold his first possible admission date will be this Friday. It is a watch and wait.
Thanks for checking up on Devin. He has been feeling remarkably well. Make sure and sign his guest book as it has become his newest obsession. Thanks
Sunday, February 15, 2004 3:08 PM CST
Devin is up and feeling good. Ready for me to fix him some chicken carrot soup. He reminded me that I was going to post his page from his class' book of what "Love Is..".
Here's Devin's page:
Love is....
Love is having friends call to say hello.
Love is getting a kiss from your dog.
Love is knowing that someone is going to be there for you...no matter what.
Love is being treated with respect.
Love is my favorite chicken noodle soup.
Love is receiving donated blood.
Love is having your friends do a fund raiser in your name.
Love is having doctors who want to make me well.
Hope you had a great Valentine's Day...thanks for stopping by to check on Devin. It's good to have great news to report about him!! Thanks for all of the continued prayers and positive thoughts.
February 15, 2004
Devin is still sleeping in this morning. He had a great day yesterday, but by bedtime was past tired. He tires so easily compared to the "normal" days. It was good to see him up running around the house.
The mailbox was full again yesterday with cards and packages from friends. His sister tends to get a little jealous, so she was really excited to see one addressed to her!! Thanks guys.
Devin's appetite is still continuing to improve. He doesn't eat a lot, but he is eating. Pepperoni pizza still seems to be something that "sounds good" to him, although I did catch him eating a bite of some of the valentine cookies we made yesterday morning. It is amazing how in the days before cancer junk food was so off limits....now we would gladly feed him anything just to see him eat. Amazing how things change.
He checked out his new on-line quilt yesterday and was so impressed. A lot of work went into making it and let me tell you HE LOVES IT!!
His blood pressure seems to be stabilizing. Hopefully this means the methotrexate is leaving his body and his next admission will run a little smoother. Every time he is admitted it seems that nothing happens the way it did last time. Frustrating. It's funny to hear the doctors tell us what is a "normal" reaction. What is normal about cancer? It almost makes me laugh when they start telling me what "normal" is.
Kara and I watched the video "Why Charlie Brown Why". It is on loan to us from the school. It was part of an information packet given to the school by the Leukemia and Lymphoma Society to help with the fundraiser. It certainly is a good video. We both cried when we watched it. It was so true to our real life. I'll see if Devin is interested in watching it when he gets up.
Saturday, February 14, 2004 12:37 AM CST
Happy Valentine's Day. Devin is up in a cheery mood this morning. Blood pressure is normal. He is excited about the day...he still has mail to open, plus he wants to check out his "site".
Thanks to everyone for all the supportive messages. The response to the web-site has been overwhelming in a GREAT way!!
Please make sure and check out the new link for Devin's online quilt made for him from those great people at Quilts of Love.
Friday, February 13, 2004
Devin is up and in a good mood today. Home health is over to draw his CBC. BP a little high, but he looks great. If his counts are on there way up we will probably get to stop the nupogen shots. Keeping our fingers crossed for this.
I take Devin's valentines up to his class. We made valentines with his picture on them (playing his guitar...what else). He is disappointed that he can't go, but I promise him I'll bring him back some valentines.
His class is anxious to hear an update on his condition. I explain to them that he has no immunity right now, so school is off limits...too many germs. They are excited to show me the bucket of money that has been collected by the school for our local Lymphoma Leukemia Society in Devin's honor. His class reports that in just a few short days they have collected $1600 in pocket change from students!! I know Devin will be impressed to hear this news. I know I certainly was!!! $1600 from elementary school kids? Impressive. The goal is for the school to raise $2500. The class with the highest totals will win a party! Cool!
I bring Devin's valentines from his classmates home to him. There are certainly some cute cards...and plenty of candy. This is shaping up to be an extra fun day!
Clinic calls: counts are on their way up!! We can stop the nupogen shots and the fortaz. The doctor wants to see if he can get his counts up on his own now. Devin is glad to be stopping the shots. They are certainly no fun.
I go to Kara's Valentine party. She looks like a little valentine is her sparkly red dress. I am so lucky that I am able to go to her party. It seems like I've been short-changing her since Devin was diagnosed.
Aunt Anita is here visiting from Seattle via Tucson. He has been wanting to see her for quite some time now. He slept through her visit yesterday morning, so we made plans to take her out for an early dinner.
Before we can leave, we have more company. A surprise. Austin, a Challenger classmate arrives with a giant box filled with toys, books, cards and candy. It is overwhelming. Many of the students have created cards wishing Devin to get well and come see them!! It is overwhelming to get so much attention. He is beaming.
We go to Famous Daves (where else). We don't get out much, so Famous Daves is always willing to accomodate us by giving us a great table. A great table to us means away from all the germs associated with crowds. Devin enjoys the meal. It is good to see him eating, smiling and acting like a normal kid. We will make a trip later to Grandpa's for dessert.
A great day. He is exhausted by the time we get home, but happy. He is too tired to open the mail that was arriving when we were leaving for our early dinner. (will give him something to do tomorrow am) Card count from the St. Louis area was 32 as of last night.....all I can say is WOW!! Our mailbox is running over.....but it is great!! He does love and appreciate the cards from everyone!!
Thursday February 12, 2004
Devin is so glad to be home from the hospital. It is amazing how good it feels to be home. The hospital is amazing....but just not home.
This creation of this website has been in my mind for so long...with all of the positive response, I wish I would have done it sooner.
Devin is SO EXCITED to check his page SEVERAL times a day to hear what people have to say. This is a tough fight, but he knows there are people all around that are cheering him on!! Thanks so much to all of you who have taken the time to drop him a line. It means more than you know.
Devin is having a good day. He sleeps in today, but is still feeling good (perhaps a lingering effect of the marinol?) I don't know, but I do know it is so good to see a smile on his face. He has had more energy yesterday and today than we have seen in months.
He is still on the IV push (fortaz) every 8 hours and the nupogen shots (to increase white counts). His cough is MUCH improved today. He is still trying to get rid of this RSV, but he is definetly sounding and feeling better.
He is excited for his class' party tomorrow at school. He was hoping to get to go, but his counts are just too dangerously low right now. We will be baking cookies at home to celebrate the holiday....who knows he might just eat one!! His appetite is up...not great, but at least he is eating. I have wondered for so long how he can be up and around with absolutely nothing in his stomach. He amazes me everyday.
BP still a little high, but controllable with the norvasc. Hopefully the bp problem is due to the high dose methotrexate. We only have one more admission for that drug.
Home health will be out in the morning to do labs. Things are looking up.
Wednesday, February 11, 2004 2:20 PM CST
Devin was released from the hospital early afternoon and is now home. He is looking and feeling SO MUCH better than when we brought him in on Sunday night.
He was sent home on a new blood pressure medicine: Norvase and will receive 7 doses of neupogen to try and build his counts.
He seems to have so much energy!! It is so good to see him feeling like a normal kid. He is playing and running around the house. So glad to be home.
Thanks to everyone who continues to write and keep Devin's mailbox full!!! We appreciate all the well-wishers!!
Wednesday, February 11, 2004 12:27 AM CST
Randy said Devin was up most of the night after his late evening nap. Was in a great mood and EATING.
Received a unit of platelets after he woke up last night. No reaction. Great.
Feeling much better this morning. Possibility he will get out since he is doing so much better. Dr. will be changing him to a once a day blood pressure medicine.
So far, he is due to be re-admitted on February 17th (next Tuesday) for his last dose of High Dose Methotrexate.
Tuesday 2-09-04
Had a horrible night. Had to have a couple of breathing treatments. He was scared. Having trouble resting at all. Still not drinking. Good thing he is hooked up to these IV's.
Cough was so bad last night. Nurse was in and out all night. He could only sleep for an hour or so before waking up coughing. Bad night. Hopefully these breathing treatments will have him a little cleared up so he can rest.
Afternoon: He was finally able to sleep. Still not eating or drinking. I know he is afraid to eat because he is afraid he will start throwing up AGAIN. He tells me he has no appetite.
Talk to dr. about getting Devin some nutrition. He suggests a feeding tube...I ask for other options. He says we can try marenol. (a drug made from marijuana). It should not only give Devin an appetite, but mellow his mood and work as an anti-nausea drug. Ok..lets try it. The feeding tube does not sound appealing.
Well...within an hour of giving the drug, Devin freaks out!! He has been in a rather sad mood all day and this drug seems to have made it even worse.
He starts asking if he is going to die and says his stomach is bouncing around. He begs for food and seems to have an uncontrollable appetite. I get the nurse and we assure him that he will be ok.
He begs her to take his blood pressure. It is surprisingly normal. He whispers that it is not normal. Can't she help him. The dr. comes in and takes one look at him....orders some ativan to counteract the drug........he begs for oxygen. Says he can't breath...Finally within a few minutes he has drifted off. NO MORE of this drug!!
Certainly not the reaction they were hoping for.....the dr. says it should not have done that to him, but we will certainly not try it again any time soon.
Hopefully the food Devin ate before he went to sleep will stay in and get him in the mood to eat.
Monday 2-09-04
Feeling awful. Temp is 101.8 Coughing uncontrollable. Finally get a breathing treatment and calm him down. BP is still running high, even with medication.
The unit is full. Seems we aren't the only ones in the unit with RSV.
Devin is lethargic. Doesn't do anything except sleep and flutter his eyes every now and again. He is one sick kid. Not eating or drinking.
Sunday 2-08-04
Sleeps in until about 10. Blood pressure is high. Temp is 99.5. Feeling absolutely awful. Breathing easier today. Give niphedipine and sudafed....temp hovering around 100 all day.
Blood pressure up all day. Temp as high as 100.8. BP as high as 157/145. Call on call....come to ER.
ER..throws up..nothing to throw up. Put him on a moniter for bp. IT seems to be settling down.
Do line cultures and take a clean sample from his arm. He does not like this at all. It is very late and he is past tired.
Dr. orders another chest xray and starts him on Fortaz for possible infection...
Counts are LOW. WBC is 0.6. He feels awful. We are waiting to go upstairs......wait, wait, wait....finally about 2:30 am we are sent to room 4422. Gene and Suzy are the nurses, he knows them both...great. Give him some medicine and lets let him sleep.
Saturday , February 7, 2004
Devin feeling awful. High BP and fever of 99plus all day. On call prescribes some sudafed cough and cold and albuterol. His breathing is labored.
Albuterol gets him calmed down, but he is lethargic. Can't lay down to sleep. Sits up and does nothing all day.
Hook up his IV at 8pm. Finally he takes a bite of food. First he has attempted to eat all day.
Hopefully tomorrow will be a better day.
Friday February 6, 2004
Sniffly and a little short of breath today. Doctors insist his lungs are clear. They have been threatening to do an RSV test for the past three days...looks like Devin will get one today.
Morning methotrexate level is 0.18. They will re-check this afternoon. Getting 2 units of blood. I believe these are units 17 and 18 he is receiving. It is starting to all run together.
10am..RSV test. He is positive. Feeling like crap.
Talking about discharging him on bp medicine. We will need to get a bp machine for home. Meth level is 0.10 - perfect.
He finishes blood at 3:55. By 4:30 they are discharging him with not only lymphoblastic lymphoma, but RSV and high blood pressure. Not so sure it is such a good idea leaving the hospital, but we head on home.
Thursday 2-05-04
Devin looking good today. Needs 2 units of blood, but his BP is still running high. Dr. wants to wait until tomorrow to give blood. Wants to try and get bp under control.
Level at 6 am was 1.9. The original level was 49.58
Hopefully we can get this bp under control and start getting blood, although cold symptoms seem to be worsening.
Wednesday, February 02, 2004
Devin wakes up after sleeping good last night. Had to get up every 2 hours for the bathroom, but other than that, had a great night's sleep.
BINGO day at the hospital. He really gets excited for that.
Blood pressure still on the high side. Giving him niphedipine. Asked dr. why the high bp all of a sudden. She thinks it is from fluid overload.
Not much energy today. Starting to have some real cold type symptoms.
Decorated Devin's window with hearts. He woke up and saw them and said they looked "cool".
Still watching Devin's blood pressure very closely...but seems to get more energetic as it gets closer to bedtime.
Tuesday 2-03-04
Snowing hard.
Wake Devin up at 9:30. He is a little sneezy. We head up to clinic. Lemons sees and listens to Dev. Says his lungs sound clear, but sends him for a chest x-ray. Luckily, it is clear.
Miss original RTU appt and are re-scheduled to 1:15. Meet some parents in the RTU whose son is through with chemo and is getting his central line out today. THERE IS LIGHT AT THE END OF THE TUNNEL!!!
A different anesthesiologist again. I was for sure we had met them all. He gives Devin the option of having nitrous....Devin says he will try it..........
Devin wakes up screaming for more NITROUS. He liked it. He is acting a little wierd to say the least. He asks if he can take the mask with him...sure....kept crying for more nitrous. I think we will stick with the "milky" medicine next go around.
Same room AGAIN...4408...Devin gets a really cool blanket. Covered in airplanes.....what a cool blanket. He tells them NOT to take it when they change his bed.
6:40pm..finally able to start chemo. Pre-medicated this time. See if we can avoid the rash. He still has rash left over from last methotrexate!!
Blood pressure is running a little high..first time for that.
Monday February 2, 2004
Russ comes at 7am for CBC.
10am: Lola calls, he qualifies.
Noon: Stephanie calls. RTU for 10:30am tomorrow. Re-start 6MP. He has been off of it for a week now.
Here we go again....start packing for our new home away from home: PCMC.
7pm: Devin not looking so good. Refuses to eat, then starts throwing up. Waits a while and eats a waffle. Hope he is not getting what Kara has had for the past few days.
We will go to the clinic before RTU to see if he is still eligible.
Saturday January 31, 2004
Devin feeling a lot better. He wants to go to the KBULL radio telethon for the Huntsman Cancer Center. He agrees to talk on the radio.
I was surprised at how excited he was to do it. He even held one of their canisters and collected money. Acted like he had a great time. He kept asking when he was going to be on the radio…..you were LIVE on the radio. Cool.
Thursday January 29, 2004
Russ comes at 7:15am. He thinks Dev looks absolutely awful. I agree. I feel so stupid. There is such a sense of urgency in Russ' voice. Labs will be run STAT.
Devin sleeps through it all, even cap change. Looks so defenseless.
Call HH, Lola, around 9am. Nothing. Having to do counts by hand...not a good sign. Preliminary platelets are a 12.
10:30 official counts: WBC 1.2, ANC 520, Hct 31.1, RBC 3.8. Not good. He will at least need platelets...poss whole blood as well.
Clinic wants us there ASAP. I pack a bag just in case.
Wake up Devin....crys, doesn't want to go. I remind him how much better he feels after blood.
3:20, received platelets without incident....on our way home!!!!!!!!!!!!
Wednesday, January 28, 2004
NO ENERGY AND VERY IRRITABLE.
Finally gets out of bed around 12:30. Not eating..what else is new.
Plays on the internet a little and trys to do some homework. Weak. Not much patience for anything.
Getting him ready for bed. He is bruised and spotted all over. Looks like he has been beaten up all over. Looks awful.
11pm, decides he needs a snack. Eats a little cereal and then heads for bed. Falls and cannot get up. I carry him to the bathroom and brush his teeth...very carefully. Seems like he could start bleeding at any moment.
Looks awful. He is telling me he does NOT want to go to the hospital. I bet his platelets and hct are too low..will see in the morning. He looks so bad, so weak. No energy, can't rest. Has such a wierd appearance-- white with bright red around his features. Eyelids and mouth are lined in a blood red line - almost looks painted.
I can't sleep. I know he should be up there, but he just has been begging me to stay home...keep a VERY close eye on him all night.
Tuesday January 27, 2004
Counts were low yesterday. Will re check on Thursday. He sleeps in until 1pm. No energy. Not eating. Counts too low for chemo...no 6MP
Sunday January 25, 2004
Devin is feeling good. We tell the kids we are going on an adventure and drive over to Hill Aerospace Museum. The place is empty.....so Devin gets to walk around WITHOUT his mask. Love it!!
He really enjoys seeing all the planes. Loves the Wright Brothers plane and the fact that he can walk around without being looked at funny....just like a normal, healthy kid.
Snowing hard on the drive home. Go to Great Grandpa's birthday. Devin is nervous around so many people. We just stay a few minutes.
Big day. Devin is wiped out.
Friday 1-23-04
Results from HH blood draw: 0.08. Stop IV and leucovorin. Great. Devin is free!!
Feeling pretty good.
Thursday 1-22-04
Devin is doing well with his IV. Sometimes we have to remind him he's attached, but for the most part he does great.
3:45p the IV pump starts screaming. No kinks. Finally turn it off and call HH. They say to unhook him and try to flush. NOTHING. They will send TPA supplies.
Randy comes home at 4:30. He gets one line to flush and we re-start his IV.
15 minutes later the IV is screaming again. We turn him off and unhook. No way either line is flushing.
6:30, Russ here--he changes caps, and dressing. Gets to flush and starts a new bad. He says if we have any more problems with it to go into ER.
Keep our fingers crossed...make it through the night.
Wednesday January 21, 2004
Level at 8:30 am is 0.13. Will re-check at 2pm. Devin feeling better and ready to go.
3:45 got result. It is up again to 0.14. Lemons says he can let us go home on IV's and let home health check his levels. Devin is sent home on leucovorin every 6 hours as well.
Go to PCMC pharmacy to get rx for leucovorin. It is wrong. The pharmacist says it isn't....I go out to the truck and get the discharge papers...SURE ENOUGH....another rx is wrong. They had filled it for 15mg every 24 hours, rather than 15mg every 6 hours. More than a small error. This is the 2nd time this pharmacy has screwed up one of Devin's prescriptions.
Get rx fixed and head home. HH arrives shortly with the IV's. We hook Devin up and put his IV in a backpack so he can walk around. He is glad to be home.
Tuesday 1-20-04
Has been quiet up here because of the MLK holiday. Devin gets 2 more units of blood and sleeps through most of it. He has a rash all over his body. After ordering the cream we get it 12 hours later....efficient.
Saturday January 17, 2004
Had a rough night. Throwing up and freezing most of the night. Randy said Devin had a bad night.
Not eating today. Drinking ok. Playing nintendo and surfing the net. Looking to buy himself an airplane...a real one!!
Chemo finally finishes at 11:15pm. 26 hours and 15 min....sounds like the pump needs to be calibrated. Becky is his nurse today. She is so nice to him.
Friday, January 16, 2003
Grandma's birthday. No special birthday breakfast. We don't have food on the days Devin has to be NPO. NPO is not fun....even when he doesn't have an appetite. Just knowing you CAN"T eat can put one in a bad mood.
Steve does the LP this time. Really nice anesthesiologist too. Seems like we will meet everyone that works in this place before it is all said and done.
Get upstairs in a room about 3:30. Same room as last time. 4408. What are the chances? We can see Lifelight helicoptor coming in from our window...also all the trees still covered in Christmas lights in front of the hospital. Nice view.
Devin gets his IV started and starts playing Nintendo. Everything is running exceptionally smooth.
By 9:15pm his pH is finally good enough for the chemo to start. Premedicated to try and avoid ANOTHER reaction.
Devin's room looks really good. I hung up the newly laminated AEROSMITH pictures on his bulletin board and on the door. Surprising how many fans Aerosmith has at PCMC.
Thursday 1-15-04
Good to be free of those shots. I was totally unaware at how restrictive they made our life, but so happy they did the job!
Get a call from clinic about results: Platelets high enough to re-start. Can re-start 6Mp tonight. Scheduled for RTU tomorrow at 1:30. Crappy time slot, but good to be getting back on schedule.
Devin will be pre-med for the high dose methotrexate this time.
Monday January 12, 2004
One of our best days yet:
NO MORE BLOOD CLOTS.....HIS BRAIN IS OFFICIALLY CLEAR!!! What a relief. He had a little trouble (more than a little trouble) staying still for the MRI...the tech was about to make us re-schedule for another day..........WE BEGGED HIM TO GIVE DEVIN ANOTHER CHANCE.....it worked!!! 180 shots later we are free and clear!!!!!!!!!!!!!!!!!!!! I don't know who is happier me or Devin.
Clinic: Dr. is excited too. Platelets too low for chemo. Stop 6MP until counts rebound. Glad to leave this place with some good news................
Sunday 1-11-04
Trying to get everything squared away before we go to clinic for our big day tomorrow. Devin will get his MRI to see if we can stop these lovenox shots. He is past tired of the two shot a day ritual. Keeping my fingers crossed.
Talk Devin into going to Famous Daves for dinner. He actually eats. Great.........nervous about tomorrow. Please give us some good news!!!
Monday January 5, 2004
Clinic will let home health do the TPA. GREAT. Russ will be out at 1pm to fix him up.
1:30 Zoe calls...she will be doing it. She can't get either line to draw now. One turns out to be positional - thank goodness. We only have TPA supplies for one line.
Zoe gets the TPA done and also takes his lovenox level. Home health has once again saved us from a trip to the hospital. What would we do without them?
Sunday, January 4, 2004
Devin feeling good today. He is playing on a hill Randy has constructed off of the deck with all the snow. I can't believe we still have a yard full of snow from Christmas!!
He is still not eating or drinking much, but still seems to have energy to play.
Good day until we go to flush Devin's line. One won't budge. I call HH....Lola calls hospital for me...they say it can wait until tomorrow. Great. Hopefully home health can fix him up and avoid the clinic. Home health is so great!!
Saturday January 3, 2004
Dr. came in this am. He is still red. Levels are better at 0.04, but he looks absolutely awful. Dr. wants a dermatologist to look at him --- possible allergic reaction to the high dose methotrexate or leucovorin (rescue drug), but which one????
Dermatologist comes over from the U. Probably allergic to one of the new drugs...not sure which one...prescribes some ointment to take care of rash. He clears Devin to go home.
Devin wants to go to Sweet Tomatoes on the way home. He throws up just walking in the door. Guess we will see if we can get him to eat at home. We have an IV for tonight, just in case.
Saturday January 3, 2004
Dr. came in this am. He is still red. Levels are better at 0.04, but he looks absolutely awful. Dr. wants a dermatologist to look at him --- possible allergic reaction to the high dose methotrexate or leucovorin (rescue drug), but which one????
Dermatologist comes over from the U. Probably allergic to one of the new drugs...not sure which one...prescribes some ointment to take care of rash. He clears Devin to go home.
Devin wants to go to Sweet Tomatoes on the way home. He throws up just walking in the door. Guess we will see if we can get him to eat at home. We have an IV for tonight, just in case.
1-02-04
His methotrexate level at 6 am is .21....needs to be .10 or less to leave..
Devin loves the new shower in these new rooms. He stays in there singing for a long time. We had wrapped his dressing, but it got wet anyway. He is not thrilled to have to do a dressing change.
Dressing change mishap: first ever, squeezed the chloraprep and it went everywhere; hitting Devin in the eye. He screamed and screamed. The nurse flushed his eye, but he is now miserable.
Dev falls asleep for a while, then wakes up and has horrible diahrrea, puffs up and turns red. He could not stay out of the bathroom. He is sick....take stool sample.
Can't stay out of the bathroom. Bad. finally passes out.
Nurses hook up another IV and give him some meds..he sleeps and sleeps. Looks awful.
January 1,2004
Randy spent the night last night. I bring up some peanut butter sandwiches from home...he is tired of hospital food already. He is glad to see his sister. He has to mask up and go outside the unit to see her.
12-30-03
Another big day. RTU appt...has been changed from 12:30 to 3:15. Great. Finally get room at 6pm. Room 4408 on new unit.
Waiting for pH to get to 7 or greater so we can start high dose methotrexate. Then we will officially be on Interim Maintenance.
Finally at 1:30 he is there....we get him started....just 24 more hours to go.
We stay up late....Janet is his nurse. She is so nice and one of the first nurses we ever had in ICS. Has to get up every 4 hours to check his urine. Not much sleep tonight. Hospital is quiet because of the holiday.
Christmas
Santa left Devin a trail of guitar picks to a Fender guitar. He was thrilled. Had a great day. Kara got a new Barbie house..it is big. Also, the icee maker she had to have.
Uncle is here. Got in yesterday. The kids are enjoying him being here. He is impressed with the stuff Santa left.
HE EATS CHRISTMAS DINNER WITH US !!!!!! THIS IS THE GREATEST GIFT OF ALL.....he hasn't sat at the same table with us in so long. He even ate some dinner.
Great day.
12-23-03
Clinic at 11
Blood starts at 12:15...3:30 still running. Devin is eating and feeling good. Loves playing Nintendo while we are here. Everything seems to be going smooth.
Monday 12-22-03
Kara's first official day of Christmas vacation. She wants to play Mrs. Claus and elves. She is in charge and Devin and I are the elves. We bake all day.....until Russ came over at 1:30 for CBC and lovenox test.
clinic calls: WBC is 2.0. We head to hospital for a clot tube. We will come back tomorrow for blood. Devin is feeling good...this blood tomorrow should make him feel great!
Sunday 12-20-03
He is feeling pretty good. Wants PIZZA for dinner...what else. Seems like pizza is the only thing he will eat. Still lucky getting him to attempt to eat one "meal" a day.
12-18-03
Sleeps and sleeps. No energy. Russ comes for CBC. Still doesn't qualify for chemo. He is scheduled for admit on 12-30-03 for 24 hour methotrexate....does not sound like fun.
12-17-03
Feels awful, but insists on going to Kara's school program. He masks up and goes...really enjoys it.
Tuesday 12-16-03
Finally wake Dev up at 10am for lovenox shot. He is not feeling well at all. Not eating, not drinking much either.
Blood in his poop...no energy...clinic wants to see him.
Clinic: nupogen again.....draw clot tube and CBC. Blood again.
Friday 12-12-03
He had trouble falling asleep last night. Need to go to hospital for galliam scan and CBC.
Clinic gives him a stocking full of goodies. He seems impressed...lots of stuff inside; including magic tricks..cool.
Kevin's dad died last night. He was diagnosed with cancer around the same time as Devin.
blood counts: too low for dentist and too low for chemo
12-11-03
Company party tonight. Dev is feeling really good. Good to have a nice, fun day. He was laughing, playing and acting more like himself.
Wednesday 12-10-03
Got nupogen yesterday in clinic, nupogen at home again today. A total of 3 doses. HH brings over auditor from CA to watch Russ "teach" me how to administer shot.
Devin falls asleep while they are here. Guess he doesnt care for an audience.
Tuesday Dec 9,2003
Clinic ordered IVs for home yesterday. He seems to feel better. Seems to enjoy the Sponge Bob tree his class made for him. It is really cute with lots of glittery shells.
Today is a big day. CT's, bloodwork and bone scans....hopefully we will get some GOOD news. It is past time for some good news.
we have CBC and clot tube drawn in the lab. Now we are in radiology having Devin drink the contrast for CT. He was just injected for bone scans.
Devin is NPO which is no big deal since is not eating. His appetite is basically non-existent.
Got ct done - fast. Went back to clinic to get blood results. We wil1 get platelets in clinic, then go to bones scan, then back for 2 units blood.
Noon: Just finished platelets, 3pm, over 1/2 way through 1st bag of blood. 4pm, 15 minutes into 2nd bag. Hopefully we will be out of here in time to go to the Polar Express.
Jazz players and dancers come in and see Devin. One, Ashley, was on the radio this morning looking for a date. Devin tells her he heard her on the radio...she asks him for a date...he tells her no. They give him four jazz tickets for a game against the Mavericks on Jan 5. Good day.
Leaving hospital at 5:15. Go pick up momma and Kara. Pick them up and head for the Polar Express. Barely make it up there in time, but we are here!!!!!!!!!
POLAR EXPRESS
A humbling experience. We get to ride the train with some of the bravest kids on this earth. What a special night for these special kids.
On the way to our train car we are stopped by a camera man from KSL. He asks if he can follow us and interview us for the 10 o'clock newscast.....of course.
The trip is incredible. We are so happy to be here. So lucky. Just an hour ago we were getting life-saving blood, now here we are gettng ready to go to the North Pole!! How can you top that???
Kids love the trip. Devin tells Santa he wants NO MORE CANCER for cancer.
Tuesday Dec 9,2003
Clinic ordered IVs for home yesterday. He seems to feel better. Seems to enjoy the Sponge Bob tree his class made for him. It is really cute with lots of glittery shells.
Today is a big day. CT's, bloodwork and bone scans....hopefully we will get some GOOD news. It is past time for some good news.
we have CBC and clot tube drawn in the lab. Now we are in radiology having Devin drink the contrast for CT. He was just injected for bone scans.
Devin is NPO which is no big deal since is not eating. His appetite is basically non-existent.
Got ct done - fast. Went back to clinic to get blood results. We wil1 get platelets in clinic, then go to bones scan, then back for 2 units blood.
Noon: Just finished platelets, 3pm, over 1/2 way through 1st bag of blood. 4pm, 15 minutes into 2nd bag. Hopefully we will be out of here in time to go to the Polar Express.
Leaving hospital at 5:15. Go pick up momma and Kara. Pick them up and head for the Polar Express. Barely make it up there in time, but we are here!!!!!!!!!
Monday 12-08-03
STILL SICK
Throwing up and so weak. Cancer is so unfair.
Sunday 12-07-03
He has this routine where he wakes up throws up and by mid-afternoon can eat. Seems the nausea is always lurking.
Today Randy takes the kids Christmas shopping. Trying to get all of the Christmas "stuff" done in case he gets re-admitted. The fear of being back in the hospital is very real.
Comes home from shopping...acts like he enjoyed getting out. He starts getting sick: throwing up...more like a chemo sick. Finally at 9pm he passes out from exhaustion. Hard to watch him be so, so sick.
Give IV anzimet in the night....hopefully tomorrow will be a better day.
November 30, 2003
Russ took CBC. Platelets 133, ANC 335. Great, doesn't need blood. He is so cute. His face is starting to thin back out.
Thing 1 from Cat in the Hat movie comes to see him. Her name is Danielle and she lives in Pleasant Grove. She brings him an ornament and signs his books. Devin and Kara are so excited......a real movie star!! We all enjoy looking at the photo album she brought.
Friday
chemo at noon
Great mood. Eats a sandwich and keeps it down. Best day he has had in a long time.
Thanksgiving 2003
We have been giving the anzimet in his line before he gets up. Seems to be working wonders.
Dev wakes up in a good mood. He actually eats a Krispy Kreme donut...wow. Excited about the turkey.
Gets chemo at noon..we will eat at 2.
Comes to the table. The smell is overwhelming to him. He goes to bed.
Thanksgiving is depressing. He has not eaten a meal with us in so long. I was really hoping today would happen. I can't believe he can eat so little and even walk around.
Tuesday 11-25-03
No chemo today. Russ does CBC. good news HE DOESN'T NEED BLOOD......HOORAY...we can stay home. Just going into the hospital makes him throw up.
Saturday 11-22-03
Slept well in our bed. Looks tired, but is walking better. He has been so sick it is unbelievable. What a horrible feeling to be unable to make him comfortable.
9am..lovenox shot. No band aid today....he is getting marks all over his legs from band aid, not to mention all the bruises. His legs look so scrawny and beat up.
10am give anzimet...temp is 99.9
By noon his temp is 100.2 and throwing up. I call on call. She calls in an order for IV anzimet and another rx for anti-nausea.
2pm give new medicine. Doing better...takes a bite of a banana.
Friday 11-21-03
Sleeps in until 8:25. Has diahrrea. Give anzimet and a little water. By 8:45 he is throwing up.
Call clinic....come on over. Threw up on the way. They check him over and start iv...sent home, still eligible for ARA-C.
I don't know if this is good or bad.....it is hard to see him so sick.
11-20-03
Russ comes out at 7 am for CBC. We might go in for chemo, depending on counts...watch and wait.
Clinic calls: 11am appt. RTU at 12:30. Dev in a good mood, playing the gameboy. Whoever invented that thing was a genius!! Thanks again to the Wakemans for such a great gift!!!!!!!
2:45 Just got ARA-C and cytoxan. It will run an hour. They will set us up to get home health for the ARA-C, then 3 days off,, then start back.
CBC and possible clot tube on Tuesday -- possible transfusion on 26th. Asked Lemons about doing another MRI He said afer Dev has been on lovenox for 3 months the would re-check. Devin is doing a lot better with his balance and walking. His hands are still red off and on since he got the transfusion on Monday. Has a lot more energy.
Home from hospital by 5pm....won't eat. Starts throwing up about 6:45. Very, very sick. He can't stand up straight. Says his back really hurts. Looks pitiful.
Call hospital. Dr. says to give benadryl. He throws it up. We call again....she says he will be ok. If not better in the morning to call clinic.
Finally at 11pm he falls asleep. One sick puppy. It seems he is too weak to move. He just looks so sick. I feel so sorry for him. CANCER SUCKS.......I have a hard time looking at him tonight...He just looks so sick.
11-17-03
Snowing hard. ANC is 645, up from 80 last week. Hct is LOW at 16.5. Needs transfusion: to the clinic we go.
Dev throws up just inside the door.....especially no fun when you are wearing a mask. Poor kid.
Arrive in clinic at 11:15. They want another CBC, clot tube and bathroom samples. Dev is sick with diahrrea too.
12:45 we are sent to BMT to get blood. Pre-med, so falls asleep. 5:45p we get admitted to ICS room since BMT is closing.
Dev starts coughing 1/2 way through the 2nd bag. Blood pressure 118/88...color good.
Hands start turning red and blotchy...then bp gets wierd, going up and down....then face turns red.....finally get him under control. Next time we will have the blood "washed".
11-16-03 Sunday
He is feeling better. No lovenox shot tonight or in the morning...NPO. Russ will be here in the morning for CBC. Should know by 8am if he goes into clinic for chemo.
11-15-03
Dev better today. Figured out why he couldn't keep anzimet down.... hospital pharmacy had mis-filled the rx with 100mg rather than 50. Called clinic. Good thing he threw it up...or would be in the hospital for overdose.
Call pharmacy. Told them of the error...their first concern was the fact they had lost money of the rx!! Unbelievable.....called DOPL to report. Also talk to quality assurance dept.
11-13-03
Counts too low for part 2 of consolidation. Throwing up lots. Lovenol level checked..increase to .25 twice a day.
So sick. Can't keep meds down or anzimet......this is not fun. I feel so bad for him. what can we do if he can't keep anti-nausea med down?
Thursday 11-06-03
Home health does chemo at home this week. Still nauseaus a lot. Still loading up on the anzimet. Appetite isn't so good.
Monday 11-3-03
Another fun day at the clinic. Devin is still feeling awful. This Ara-C is MEAN. He wakes up every morning throwing up. He is taking anzimet regularly. Not so sure it is doing the trick. Hasn't eaten since Saturday.
Labs are back on culture: negative. stop vanco
CBC back: Dev needs blood today. His hct is very low
Setting up to do the rest of our ARA-C at home through Home Health. Keep us out of clinic as much as they can.
Almost through 1st unit of blood, Dev complains of a headache...next unit, starts throwing up. Blood is stopped. He is turning all red. Poor Devin. He is having a reaction to the blood. Dr. decides he has had enough for one day.
We go home, tomorrow we will talk to surgeon about what to do about the incision site.
HH scheduled to do chemo at home. Nervous
Sunday, Nov 2, 2003
Back to the ER today for Dev's horrible headache. Do an MRI to see what is going on with the clots. Put him on morphine. No relief.
ER dr gives Devin the option to stay or go home....we go home with vanco upped to every 6 hours.
Devin feels awful..not eating. Poor kid. I wish there were something I could do to help.
10-31-03
Clinic again today. M, T, W, TH this week for ARA-C. It is already getting sick every morning from ARA-C. No fun. Last night while doing his dressing change he sid it hurt. Dr.'s will take a look at that as well. Here we are on his "Friday off".
Took off dressing and took cultures of both lines to see if he has a line infection. Cultures take 24 hours. He is put on vancomyacin AGAIN, but every 8 hours, rather than every 6. Seems like we just got through with vanco. Here we go again. I think vanco makes him feel just as bad as some of the chemo drugs.
We are going home. Snowing. Devin is excited for trick or treat tonight. He will be Cat in the Hat. Looks too cold for trick or treat to me.
Got home to a house full of goodies. Friends had brought over candy, cookies...even a Simpsons DVD. He still wants to go out. Snowing like crazy. We bundle him up and Randy pulls him around the neighborhood in the wagon. Kara opts to stay home and eat the goodies already there -- good choice Kara. One cold Halloween!!
10-31-03
Clinic again today. MWF this week for ARA-C. It is already getting sick every morning from ARA-C. No fun. Last night while doing his dressing change he sid it hurt. Dr.'s will take a look at that as well.
Took off dressing and took cultures of both lines to see if he has a line infection. Cultures take 24 hours. He is put on vancomyacin AGAIN, but every 8 hours, rather than every 6. Seems like we just got through with vanco. Here we go again. I think vanco makes him feel just as bad as some of the chemo drugs.
We are going home. Snowing. Devin is excited for trick or treat tonight. He will be Cat in the Hat. Looks too cold for trick or treat to me.
Got home to a house full of goodies. Friends had brought over candy, cookies...even a Simpsons DVD. He still wants to go out. Snowing like crazy. We bundle him up and Randy pulls him around the neighborhood in the wagon. Kara opts to stay home and eat the goodies already there -- good choice Kara. One cold Halloween!!
Monday 10-27-03
Starting Consolidation today. This is the 2nd phase of chemo. We are off schedule due to the blood clots.
No lovenox last night or this am. Appt at 10:30. Lines won't draw. TPA...again. Miss original RTU appt due to line problem.
Today is ARA-C, cytoxan and spinal. Waiting...long day.
Saturday,, 10-25-03
Still exhausted from the concert. We head up Alpine Loop for a picnic. The leaves are really pretty, but Devin is unable to walk around. The clots really mess up his balance. He complains of being cold, so it is a short trip. Glad to get out of the house for a while.
Thursday 10-23-03
Devin up at 7am...still smiling. What a day. Take his pictures over to Sams to get developed....can't believe how many good ones we have!!!
Wednesday 10-22-03 CONCERT
Devin is soooooooooooo excited. Me too. Can't wait. Devin is in a super good mood....great.
Mark Powell calls from the Delta Center asking for a letter about Devin. There is a possibility we will meet Steven Tyler ..... not going to tell Devin. Don't want to jinx it.
A man named Don Powell calls from CA. He is one of Sheila's friend, Gayle's in St. Louis.
Mark is hoping something special will happen for Devin. Me too. I'm about ready for something good about now.
Talked to a limo service earlier.....I think we are set to meet the wheelchair at the curb. Devin is NOT walking much at all. Very unsteady.
Devin is so excited in anticipation for the concert tonight. He has no idea about what might happen. It is so thrilling to see him so excited and happy. It has been a long time.
Decide I should borrow a camcorder...just in case...ours is giving out. I call Kevin what might happen...he is thrilled too. Everyone is so excited about this big night.
8:15p.....limo is here. Dev is so impressed and excited. It is so big. Takes grandma, Kara and Kevin for a ride around the block.......I'm shaking I'm so nervous.
8:20p..Mark Powell calls....we WILL meet Steven Tyler. Or should I say...Steven Tyler will meet Devin.......I call Jeff and Sheila to tell them.
We leave for concert. A wheelchair and Delta Center employees are waiting at the curb. We are rushed into the Delta Center and down elevator.......our 1st stop was conference room with a buffet.
NEXT........out in the hall to meet STEVEN TYLER.........WOW.......OH YEAH....................................................................................................................................He poses for pictures with Devin and asks him what he thinks of KISS.......we haven't seen them yet, just got there.....he says go see KISS then he will talk more to Devin.
We are taken up next to the stage for KISS. Devin has his earplugs in....seems to be enjoying it. He's not familiar with their music....but enjoys the rest of the show. Tommy Thompson (aka the new Ace Frehley) hands him down a guitar pick. Pretty cool
Next...............on to Steven Tyler's Rocksimus Maximus dressing room. What an experience.........Devin and Steven talked like they had known each other for years. It was beyond COOL. Won't be forgetting this experience for a LONG time!!
Met all of Aerosmith: Joey Kramer, Tom Hamilton, Brad Whitoford and Joe Perry. They were all so NICE. Incredibly nice.
Devin had taken many CD's and things to be signed...Steven Tyler signed them all..........even a set list for Uncle Jeff....who was on the phone listening to the entire conversation, as well as the concert.
Concert itself was great. Great seats.....security people all around Devin to keep him safe.
Wished the night would never end. Our limo awaits.....a box will be sent soon.....Devin is smiling and falling asleep..........smiled all the way home.
I know Steven Tyler can have no idea what kind of impact he has had on Devin. We are so grateful for all the "behind the scenes" people YOU KNOW WHO YOU ARE who helped make this unbelievable night happen.
Tuesday, October 21, 2003
Jury duty this am. Takes too long to "get out of it". Randy spent the night with Devin.
Dev gets to go to PT today. He loves the cool 3 wheeled bike. It works arms and legs. His coordination is not good at all right now. Therapist gives him some exercises to do at home. His favorite part...bowling. Nice for him to get to do something fun.
4pm...dr. is giving up on cumadin. Dev's body just doesn't like it at all. He will be going home on lovenox .18 twice a day at 8 and 8. Glad to be free.
Monday, Oct 20, 2003
Meeting at 3:30. I hold nothing back. I am confident that Devin will now be treated like he should have been treated all along.
Received 2nd opinion FINALLY today. Same treatment plan, still the unknown of just how important asparaganase is to Devin's treatment. No replacement drug.
Depressing to say the least. Hopefully we will get out of the hospital before Wednesday night so we can go to the Aerosmith concert.
Sunday night
Devins nurse comes in to do the dressing change.......some type of reaction.....possibly a trace of latex in the kit HH used yesterday?? It's always something.
Saturday 10-18-03
Devin is worn out...very weak. falls alsleep easily. He is not looking so good.....scared to have him home.
5:30 peeing blood.......to the ER we go.
ER...order a cat scan of his belly. He drinks the contrast without much problem. Chases it down with a pickle.
We express to the ER docs and social workers how angry we were at Devin's early (too early) discharge...........we are getting a meeting scheduled for Monday.
11:15p...finally in room. gets 2 units of fresh frozen plasma and vitamin K. Thank God for all of these blood donors.
Feeling much better Sunday morning. No one at the ICS is surprised to see us back so soon.
We have such a nice nurse. Devin is really enjoying visiting with her. He is looking better, but not great. Says his pain is a 6. Both underarms hurt, head aches and belly is distended. My poor baby.
He tells me today that he is tired of cancer. Mom, did you know that some people have cancer for 3 months?" I don't say anything...what could I say. He has only been diagnosed for 5 weeks !!
Friday 10-17-03
Still waiting to hear what the surgeon said about the clot under Devin's arm. We have no idea if he will need to have this fluid drained.....waiting again.
Dev is in bad shape. Not walking well. WEAK.. Home health gets his labs and calls.....NO MORE COUMADIN!!
Thank goodness for HH. Dev's levels are out of control............beyond scary. HH advises us what to watch for...
Falling when he walks....don't let him........he has no idea he is going down. Scary
Thursday 10-16-03
Feeling crappy today. Getting shots and coumadin now...has to be off shots to go home.
Ultrasound of biopsy site at noon......blood clot and fluid collection.
THIS IS WHERE I GET TOO MAD TO WRITE: SIMPLY, Devin was discharged against my will before he met the criteria to go home.
Devin's coumadin levels had NOT been stabilized AND he had NOT been off of shots to see how much coumadin his body needed. ALSO, we were still waiting to hear what the surgeon thought should be done about the fluid collection under Devin's arm (biopsy site).
I left the hospital not only furious, but scared as hell. This kid could not walk 10 steps unassisted and had been discharged. UNBELIEVABLE
Wednesday 10-15-03
Incision site is bothering him still. Waiting to get an ultrasound done. Attempting to get him off of shots and onto coumadin.
MRI at 5pm...just as Nicholas and Pam were showing up. Seemed like the MRI took forever. Devin dand Nick watch Scooby Doo.
Devin shows Nicholas his wish bosx he made yesterday with Derek Parra. He was so nice. Even let Devin hold the god medal he won at the 2002 Olympic games. Cool.
Talked to Dori..sold their house. Devin is upset that he wont get to see Gray any time soon.
Tuesday,, October14, 2003
Dev is looking bruised from all of the heparin shots. Poor kid. His appetite has been good, but still hasa headache.
Saturday 10-11-03
Devin barely stirred when I did his 5am IV. At 6 he woke up with headache still. I had given him lortab at 10:30 last night, but still hurting. He goes back to bed and sleeps until 9:30. Eats 3 bowls of cereal, took meds and another lortab. Headache is VERY evident. He says it hurts to touch his head and he is cold. Wrap his bare head in a bandana and cover it with a stocking cap.
By 1:30 I call on call...she asks me to describe his symptoms.....says possible side effect of peg-spar shot (received 10-06) is blood clots. Off to the ER we go.....we are packed and ready to go.
Arrive at ER about 2 pm, send us for a cat scan, then an MRI.....results of MRI show clots in 3 areas of his brain.
Dev is admitted to PICU after some blood draws....can't get his line to work, so take it out of his hand.
We are mad that the dr. in clinic did not recognize the fact the headache could have been a reaction to peg, since Dev was allergic to L-spar. Also angry that we were sent home without an IV from clinic when his BUN was high.
They get Devin dosed up on morphine. He is hungry, but they arent sure if he needs to be NPO. Morphine doesn't work, so they change him to fentanyl and give him a shot of blood thinner. He will need a shot every 12 hours.
He is miserable and it takes what seems forever for him to get comfortable enough to drift off to sleep.
Randy and I take turns at his bedside. I leave first to borrow a "sleep room"....Devin is not doing well.
Sunday .......still NPO...there is a possibility they will try to go in and remove the clots. This is a scary scenario.
1:30pm...NPO lifted. They have decided to let tehe clots clear. He wll be weaned off of heparin shots while in the hospital, then sent home on coumadin. We will probably be here another 5 days. Should be moving up to ICS soon.
Friday 10-10-03
Clinic at10am. Devin has a bad headache. I drop him and momma off at the front door to park. He falls. Scares us. Not walking well at all...seems unsteady.
The jolly dr. is there. Says the headache is from the latest dose of vincristine....well, here we are for more! It seems so mean.
Get home and review bloodwork...notice the Bun is high..why? Headache is still continuous...poor kid.
10-09-03
Quiet day. Stay home and enjoy NOT going to the hospital. STill on IVs. Starts having headache. Treat with tylenol- seems to help. Sleeping a lot. Sleeping anywhere he gets still.
Loves his new Simpsons game boy game.
Tuesday and Wednesday
Devin wants to pick our pumpkins. I make him point to the ones he wants. Don't want him to get any dirt or pesticides on him. Nervous about his lack of immunity.
Went to Del Taco...his choice. Every time he moves hair is flying around. This is too much. We need to go home. Devin seems oblivious....seems as though everyone is staring at us..wondering what is wrong.
Took a nap. Still on IVs at 5 and 11,
Wed...sleeps in until almost 11. Marie brings a card the class made. We still haven't opened the adorable cookie bouquet from Ireland. The phone is still ringing incessantly. The mail box is full or cards from all over. A popular kid.
Monday 10-06-03
Nurse comes to take blood before 11 am IV. Nothing....tries everything. Talk to Dan at the clinic...Start IV and come on down.
Dev is crying for Dairy Queen. We go to get food. I will get Devin fed before we rush up there. I hope we don't have to stay!!
Clinic--receive peg-spar shots. Wait an hour. Blood drawn without a problem. Thank God. I feel like celebrating. We need to get home by 5pm to start IV so we drive straight home.
Exciting day...Devin's shot landed up being 2 one in each leg. What a kid...didn't even flinch. Not scheduled to return until Friday!! Does feel like a vacation! Mood is good. WBC is up slightly. Still lacks energy. Just basically wiped out all the time. Poor kid. What a change of pace. Everything in his world has been turned upside down and dumped. What an unbelievable nightmare. Every morning I wake up and we're still in it.
Dev lost most of his hair over the weekend. He looks quite different. His face is so round and his belly so distended. Thanks to steroids 3 times a day. He doesn't like looking in a mirror at all. I have been calling him Peaches. He laughs at that.
Having headaches off and on. Is it the new med or vincristine? Vincristine has headache as a side effect. Will ask dr at appt. Tylenol or 1/2 lortab seems to cut it. Nice to not go in until Wednesday.
Sunday, October 5, 2003
Wakes up in a good mood. Makes a list for the grocery store and wants to go. I start his IV and we get ready. He sits in the basket. Too tired to be up walking, but glad to be out and about. He is interested in "Cat in the Hat" anything and a Hickory Farms beef stick. Prednisone has really made him think about food ALOT!
Thing 2 from Cat in the Hat called for him last night. He thought that was very exciting. Put him in the mood for all the Cat in Hat foods.
Nurse, Russ, comes for blood draw...nothing....we have had trouble with his line before.....great. Tries to get blood out of his hand twice. No luck. Devin is mad and overwhelmed.
Marie has taken Grandma and Kara up to Silver Lake for the afternoon. Nice to have some quiet time. Randy and I are working at sorting through bills.....it has been a long time since we did anything "normal".
One day at a time.
Saturday, October 4, 2003
Randy is up at the hospital with Devin. He is waiting on the pathology report. This takes forever. Also, waiting on labs drawn at 6:30am to see if Devin will get vincristine that he should have received on Friday.
Around 5 pm Devin gets his shot. FINALLY. He still needs to be discharged. He gets tired of waiting and unhooks his pole to leave. Luckily the dr. was just outside the room and ready to come inside. Devin told him he was tired of being there and wanted to go home....released at 6:20pm.
Kara and I run by Ann's to FINALLY drop off a baby gift. We've never even seen the baby yet!! Born on Monday before Devin was diagnosed. Baby has more hair than Devin.
Most of Devin's hair came out while in the hospital this visit. We sat him in the tub and tons of hair was coming out. It was wierd to see if happening. Devin acted ok with it. Harder on us to see. I guess this means the drugs are working.
Run by Famous Dave's for pick up. They recognize us and ask where my little boy is and what is wrong. I tell them and they said they will deliver to our home or PCMC anytime. Sent Devin a brownie and get well wishes. Pick up bottles of all their sauces...seems going out to eat may be a thing of the past.
Diane comes over at 10:30 to show us how to start IV's. He will be on IV's every 6 hours at 5 and 11. Life is changing more, but we are so glad to get him home. At first IV's are overwhelming...we just got the dressing change and flushes down pat!
We'll get it figured out....Iv's at home for 10 days...40 IV's alternate lines between blue and yellow. We can do this.
10-02-03
Planning on getting our family pictures made if Devin got out of the hospital. Looks like it is a go. Thank goodness. We are wanting a fall picture with the leaves turning...not a lot of color yet, but we will seize the opportunity to get the thing done...who knows when we will land up back in the hospital.
Pictures at 2pm at Murray Park. Momma and I had raced around town to find Devin something navy to wear. Finally found something......everyone else, for some reason, already had their navy blue clothes ready for the picture.
Everything went so, so smooth for our pictures. The dogs and kids were so cooperative. I couldn't believe Willie could be so still. That dog had given us so much grief in his short time with us...I was totally surprised how well he behaved. Devin is too weak for much. Glad to have it done.
7pm I told Devin it was time for dressing change and line flush. He took off his shirt and was dripping.
Called nurse at 7:15, at 7:30 Holly came over and told me to call the main home health #. Eventually called PCMC and was told by on call oncologist that he was probably infected at his incision site.......come on in!!
Saw Dr. Strand AGAIN in the E.R. What a nice dr., but I was already tired of seeing her so much. She admitted Devin. ICS full, so sent to Med Surg, room 3024. We were told we would see a surgeon at 5:30 am--then 7 am--finally the NP for the female surgeon came by and said he was fine.....AT 1pm the surgeon said NO, he was infected. She would make him NPO at 2pm and do surgery at 8pm.
Devin made a dreamcatcher from the craft cart. Mood is pretty good. Wrote me a story and drew some pictures. What a sweet boy.
An extra nice nurse today, Diane. She also works for our home health company. She called CCS to tell them Devin was admitted. Zoe and Hal came out to see us. Nice to have some company.
Finally at 10:30 during the Simpsons the dr. showed up. Finally. Wanting to get this over so I could get home to see Kara.
11pm headed home. Construction on 2-15 AGAIN. Every time we leave the hospital we must take a different route due to road construction. Randy is staying with Devin tonight. Nice that we can take turns. Devin is planning on eating the Arby's sandwiches dad brought. He is tired of hospital food.
Wednesday, October 1, 2003
Clinic again at 10am. I ask NOT to have Heather this time. She is upset and confronts Devin while I'm in the bathroom. This is so ridiculous. Why does she even care?
Dr. Afifi is in and out. She likes Devin, but always wants to talk to momma. Sheri comes in and gives the L-spar shot. Afifi comes in and says she wants a chest x-ray. I don't know why. I had asked earlier when we would do another and she said at the end of induction (Oct 22 or 23).
Heather clears us to go. We are to go and get a chest x ray. We mask Devin, collect our things and go to radiology. Heather stops us in the hall to look at Dev's leg. She says he is fine. We go on to xray -- Dev's face is swelling around his mask. Soon Pam is there and hurrying us back to RTU. She says Devin is having a reaction. He has a hive on each side of his neck. (He had one when we left prior and Heather said he had probably scratched himself) Robin the NP said they were hives.
He was given the epinephrine and benadryl. Soon he was very sleepy. I left momma there to get the lab results ---his airway started closing up and the room was soon full of emergency people working on him --- it was beyond scary. Heather, Robin, Pam, Derek...and many more were hovering over Devin. It was unreal and it was happening right before our eyes!
They said they would admit him. He was so sleepy he couldn't argue. They said they would move us into a room--instead we spent the night in the RTU.
When Devin woke up he was furious. He was tired of hospital food. I told him I would order Dominos. I ordered 2 orders of cheesy bread and a medium pepperoni pizza. He ate all but 2 slices of pizza and an order of bread. Prednisone had made his appetite out of control.
Randy came about 8pm and momma and I left. Kara was once again at Holly and Kevin's. The next morning I went to his room before 7am hoping to talk to his doctor. Randy and Devin were sleeping peacefully. By 8am they were awake and Devin was past ready to go home.
Dr. Frazier came in and saw us. We talked about a nephrologist--he thought it was unnecessary. I told him I thought it was. He discharged us at 10:30am
Monday, Sept 29, 2003
Clinic at 10am. They say we won't be here long, but we don't leave until 5:30. Devin has had Heather for a nurse. He acts like he doesn't like her for some reason. Next time I'll ask NOT to get her. He screams throughout the L-spar shot. It is not fun. We leave exhausted.
Sunday, Sept 28th
Go to the new Famous Dave's to eat. See the Ottos there. Give Marie her birthday present and bags of clothes we have been cleaning out. We have been doing some SERIOUS cleaning and still have lots of work to do. Trying to make way for all the newly acquired medical equipment that is taking over our house.
Friday, 9-26-03
Nervewracking day!! Devin is NPO since midnight. Hungry and nervous. 12:30 do back poke. He wakes up and is starving. He eats crackers and oreos, then we go back to original room. He orders 2 corn dogs, a hot dog and cheese sticks. Eats it all...also dessert.
Time for l-spar shot. I guess with the emla cream its not so bad. They give me a rx for the cream...I'm in charge of putting it on for next time...great I'll be the bad guy.
Only gets 1/2 dose of vincristine, because of high bilirubin. His sodium is too low so he gets a 4 hour IV. He is not thrilled to be at the hospital. NOt so bad with the snacks from room service. Orders 2 desserts but doesn't eat them...craving salty foods instead. At 6:30 we can leave the hospital. Randy is at a conference so momma and I rush home to pick up Kara from Holly's. It has been a LONG day.
Gypsy has called to bring over dinner at 5. It's now 7. Bring over a delicious turkey dinner. LONG day.
Shortly after eating Dave and LaRee come over with LenNae. Everyone stands around and stares at Devin like he will begin to do tricks. I'm ready for some quiet time.
Weekend is fairly quiet, except for the phone ringing off the wall. Everyone is calling to check on Devin. More cards and gifts arrive. Devin gets his hair hat---he is ecstatic!! Thanks Scott and Amy!!
We go up the canyon to see the leaves. Grandma goes too. Beautiful colors..Devin is weak. He and Kara fall asleep on the way home.
Wednesday, Sept. 24, 2003
Left the hospital with an appt. for Friday a 11am. We had to get a wagon and a wheelchair to get all of Devin's stuff out of the room. Quite a site. Balloons, toys and gifts from many friends. He definetly felt loved.
Asked to stop at Color Me Mine on the way home. He had been wanting to make Kara "something"....made her a cute little tooth box to put her soon to be missing teeth in. What a thoughtful brother. Insisted we make a plate for Ann's new baby. He's wearing his mask, out in public for the first time...I'm nervous as hell. He seems just fine.
Home...Kara and Grandma made signs to welcome us home. He wanted to go to his room and lay down. Never fell asleep, just enjoyed the peace and quiet.
Lairds brought over dinner...mannicotti. Devin ate well. Not a lot of energy, but hard to imagine how sick he really is. He's afraid to sleep alone is his bed. Fine. I'm scared too.
How it all began:
Our whole world changed when Devin was diagnosed with cancer on September 19, 2003. I had taken him to a local E.R. on the evening of Sept. 16, 2003 because of recurrent back pain. He had been complaining of back pain for a couple of days, but tonight was different. We had tried everything to get him comfortable and hoped the E.R. could get him some medicine so he could sleep. Little did we know how quickly our life would change. Chest xrays and bloodwork were done. It seemed as though we were there for hours. Devin was in excruciating pain and could not get comfortable in any position. I could not figure out why they would not give him something to relax. Soon I was told an ambulance would be taking Devin to PCMC. Devin heard this and was terrified. The dr. said that since mom drove you here he bet she could drive you to Primary. "You know how to get there don't you mom? "Of course" I told him. At this moment I finally clued into the fact that something was terribly wrong. I asked the nurse for the quickest route and was escorted to my car. That nurse had the kindest eyes and told me, hopefully they caught it soon enough. I was more scared than I had ever been in my life.
We quickly drove to PCMC where the doctors were expecting us. It was a frightening experience to have dr's waiting in the doorway for you to arrive. They took the xrays from my hand and quickly drew more blood. Devin was feeling horrible and was unable to even talk coherently. His body was slumped and his head looked as though it was coming out of his chest. Something was wrong. I begged them to give him something for the pain. I had never seen anyone is so much distress, much less my own child. I was in total shock of the situation.
Within a few minutes the dr. came into the room and told me that Devin had cancer. He had a mediastinal mass in his chest which had collapsed his right lung and was pressing against his heart. She told me he had superior vena cava syndrome and all the blood on the right side of his body was being shut off. I was told it was extremely dangerous to sedate him because he might not wake up. I was dumbfounded. I asked her to step into the hall and repeat what she had said. She was so matter of a fact. Oncologist was on the way..chemo would be started soon. I was in shock and disbelief! Was this some type of cruel joke? They had to have the wrong kid. What had I done to have something so wrong happen to Devin? I called my in laws and asked them to go to my house so my husband could come to the hospital.
It seemed like hours before Randy got to the hospital. By the time he arrived Devin had been admitted to the PICU. I don't think Randy even recognized Devin when he saw him. He was walking around the PICU like an old crippled man. His head was jutting out of his chest and he was making wierd noises. It is a sight that still lingers in my mind. How could this be? This kid had been hiking in the mountains just days earlier?
The oncologist on call arrived around 5 am. She okayed giving Devin a little morphine....well a little morphine wasn't cutting it. He was in so much pain. He had been put on oxygen in the E.R., but was still having trouble breathing. Finally they put him on a morphine pump and allowed him to sleep. The oncologist said the tumor was most likely cancer, but the tumor would have to be shrunk with radiation therapy before he could tolerate a biopsy.
Later that morning he was taken to the University hospital with a life flight nurse at his side for radiation. What a scary experience. He was totally unconscious for the experience and I am grateful for that. First he was taken in a room to be marked up, then to the radiation room. We were allowed to be in there while they strapped him up to receive radiation. While receiving radiation he was in the room alone, while we were kept on the other side of the door. Luckily he would only need two treatments to get the tumor under control enough to perform the biopsy.
After radiation the scans began. Bone scans, cat scans, MRI's, you name it, Devin had it done. Slept through every bit of it. All the hospital staff was so nice to us. We were grateful for their kindness during this difficult time.
Later that day, we met two more oncologists. Seems they always traveled in pairs. They explained that a sample of Devin's lymph tissue from under his right arm would be taken for biopsy. This would need to be done in order to tell what type of cancer Devin had. The scans would be read shortly and we would know where else cancer might be growing in his body. While they were taking the biopsy they would also take bone marrow aspirates out of his hip bones and place a double lumen broviac in his chest. This, they explained, would eliminate the need for many "pokes" down the road. We signed the paperwork and waited.
We were told the surgery went well. His broviac was now in place. He had tolerated the surgery well. Dr. Lemons said his first impression of the tissue sample was Non Hodgkins Lymphoma. We were ecstatic with this news. Here we were sitting in the o.r. waiting room praying for Non Hodgkins Lymphoma. I started to think I was crazy, but from what little I had read in these past couple of days, it sounded like a "good" cancer. Treatable...sign us up!!
At 4:30 pm on September 19th we got the "official" report. The cancer was Non Hodgkins T cell Lymphoblastic Lymphoma stage III. The doctor seemed really excited. We were excited too, he said he could fix Devin up and be good as new. Best news of all was that although Devin has cancer in his spine, his spinal fluid is clear. I didn't realize at the time, but this was VERY good news.
We quickly went to go over the treatment plan with the other oncologist. The information was overwhelming. It certainly sounded like a big project. I was glad Devin's kind of cancer had such a good success rate. Of course we were worried about all of the known side effects that were listed, but the facts were Devin needed this treatment to beat cancer!! We signed on the dotted lines and made the big jump into the world of childhood cancer.
At 6 pm that night (19th) the haz-mat girls showed up to start Devin's chemotherapy. We were totally unprepared for the sight before our eyes. Three nurses dressed from head to toe in blue chemo apparel. They started his first chemo drug, Daunarubacin. We watched him, sleeping through this and wondered what would happen next. The doctor had advised us that kidney shut down is a risk with this drug, so the dialysis machine was standing by. Scary. Luckily it was not needed. He amazed everyone in the PICU by getting up every time and dragging an oxygen tank and IV pole to the bathroom. He was doing just fine. Good mood and breathing SO MUCH better. He was now on prednisone and was really enjoying the hospital food.
After finishing his first treatment without incident he was cleared to go to the 3rd floor to the ICS unit. We soon learned what this meant. It was a scary adjustment from the PICU, but he had so much more freedom, plus there was talk of sending Devin home soon. It seemed like years since we had been there. Before discharge we would need to learn some nursing skills: flushing lines, dressing change, cap change and shot administration. It seemed like a lot to learn, but we did it...slowly but surely.
Devin received a dose of asparaginase on 9-22-03, then another on 9-24-03. He seemed to tolerate them well.
Finally on the 24th he was cleared to go home!! It had been a long haul, we were nervous, but ready. So much to remember. We would have a home health company to help us out. We certainly would need help. Excited to be leaving, but scared at the same time. We were due back on Friday the 26th, but we could take our boy home!!
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