Journal History
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Tuesday, January 6, 2004 11:48 AM CST
Hi Everyone!
I know it's been awhile since I updated, but I have to say things with Nick have been pretty uneventful!!
Nick had his monthly check this time at Children's with his Oncologist Dr Heisel. We have been having Dr Cahill, here in Blue Earth, do 2 months of monthly exams and counts and then go up to Children's for the 3rd month.
Everything was PERFECT!!! Except for an ear infection that they started him on some Zithro for. But otherwise his counts were good...I couldn't believe his HGB was over 14!! Holy cow! He's was used to a HGB that ran around 9 or 10 during treatment.
As for his lungs, they sounded clear and we haven't had to deal with a cough in quite a while. So it was decided that we would continue the 2 months here and then we need to go back to Children's in April.
We have hit 6 months off treatment, and I was terrified to go yesterday because I am so afraid of the big "R" word...Relapse. The greatest risk for relapse is within the first year Off treatment. We are half way through, whew! We just need to keep an eye on his counts each month and look out for the bruising, leg pain, tummy pain (swollen spleen, liver), easy bleeding, headaches, dizzyness, etc. The two major places where relapse occurs in males is the testicles and the Central Nervous System (CNS)spinal fluid.
Thanks for checking in and for all your thoughts and prayers...we'll never be "out of the woods" completely, but at least we will be able to see sunshine more days than not!
Hugs,
Sheila
Thursday, September 11, 2003 10:45 AM CDT
IT'S a CELEBRATION for NICK SCHONROCK and a SINCERE THANK YOU TO ALL! ("ALL" meaning everyone...not A.L.L aka acute lymphocytic leukemia! :0)
OPEN HOUSE
Saturday Sept 20th, 2003
3pm - 7pm
Senior Citizen Center Blue Earth, MN
Please come and share our happiness!
Thursday, August 21, 2003 4:37 PM CDT
Hi All...
Just wanted to let you know that Nick's "deportation" went very well. Grandma and Grandpa Bleess and Tyler and Dad went up with us. We had to be there at 11:45am for scheduled surgery at 1:45. We were able to get in about 15 minutes early, which was good. Nick was very brave (as always).
The surgeon came in and did his little speech before surgery. Nick asked him if he could keep his port. Then Nick asked him if he would make sure to clean it up before we took it home as he didn't want it all disgusting!! :0)
When we got to the 2nd surgery waiting area, I gave him a kiss and told him I loved him and he started to cry and wouldn't let me go. That was hard. Dad went into surgery with him until he went to sleep. The surgery lasted about an hour. He was in recovery for about another hour.
Then they called to let us know he was on his way back to the room. I stepped out into the corridor and saw him coming down the hall. He partially sat up and lifted his shirt and said "See...no port Mom!" and smiled. We sat around for about 1/2 hour and then they let us go.
His counts were awesome!
WBC: 5.3
HGB: 13.3
PLT: 222
ANC: 2544
We are to go back in about 4-6 weeks to Children's to check counts with Dr. Heisel.
Last Saturday Grandma Karen and I took Nick school shopping! He is ALL boy! It took him about 5 minutes in Old Navy to tell me what shirts he liked and we were out of there in 10 minutes flat! He is getting excited for kindergarten!
On another note...last night we had Zac in the ER as he got a corneal abrasion on his left eyeball. It was quite painful for him yesterday and last night. But after sleeping a full night, it seemed to recover very well and he was feeling good this morning. We just need to continue an antibiotic ointment to help lubricate it and prevent infection.
Well...I will leave you at that. Will keep you updated.
Hopefully there will be no more ER or hospital visits in the near future! :0)
Hugs,
Sheila
Monday, August 11, 2003 2:28 PM CDT
Hi Everyone!
Nick is scheduled for his port removal on Monday August 18th. We are all so excited, yet kinda scared. As this signifies that he is officially "Off Treatment" and we are now trying to get used to this new phase, and it is a real adjustment.
Nick will need to get counts check about every 4-6 weeks. Since he will no longer have a port, it will be drawn from his arm. The last time he had this done a couple weeks ago...he was so brave and didn't even cry. Because he ran into some bumps at the end of treatment his Onc would like us to come up to Children's the first couple times for counts, and then eventually we will be able to alternate every three months and get two months drawn down here in Blue Earth. After traveling to the cities at least 2X a month on average for the last 3 years and 2 months, it will be a BIG change.
On Friday Aug 8, we enjoyed a night at the Faribault County Relay for Life. It was a beautiful night and we all had a great time. For some reason, I was a lot more emotional this year, than the last several. I had resigned as the American Cancer Society Advocacy Chair for the relay, so the only thing I had to do this year was walk and enjoy the night. Which must have gave me more time to think about how blessed we are to have such a healthy and happy little boy. I have added some pics from the relay on the photo page. I don't have the final $ amount, but I know that at about 9pm there were over 8000 luminaries lighting the walk.
Tyler went up north with his grandma and grandpa Ioerger for a whole week! I just don't know what to do with myself with only 2 kids here. Constantly feels like I'm forgetting something or SOMEONE!
Tyler will be going into 4th grade this year. Can't believe that it is happening! He is growing up sooo fast. Nick will be starting kindergarden and will be going all day Tue/Thur, every other Fri. Zac will then go to his preschool on Tue/Thur afternoons. Busy, Busy, Busy.
Well...thanks again for all your support and prayers throughout the last 3 years!
Hugs,
Sheila
Thursday, July 24, 2003 5:41 PM CDT
Hi Everyone!
Good News! Nick is off treatment for his crytococcal pneumonia now too! So...that means tonight is the first night without having to take any pills!!!!
We went to the Infectious Disease Doc today and she said he looks and sounds great. He did have to have his sed rate drawn today, as it was 29 two weeks ago. She said that if this was back to normal, he could discontinue treatment with the Diflucan. They called this pm and it is 8! So much much better. His chest xray shows a little residual scar tissue, but that is expected.
So... our next and final step is PORT REMOVAL. We have cancelled our trip to Northern MN in August. Too many unexpected expenses this summer. So...we are going to see about getting his port out in August before he starts school.
Again...thanks to all of your thoughts, prayers, and support throughout the last 3 years.
We will keep you updated!
Hugs,
Sheila
JUNE 7, 2003 10am
Update on Nick
June 7, 2003
We went to Children's yesterday for Nick's spinal tap to make sure that there was not fungus in his fluid. When we arrived they told us they wanted to do a Bone Marrow Biopsy and Bone Marrow Aspiration. I guess that that is one place that this fungus can hide out too.
We talked with the pulmonologist who said that he has been doing bronchoscopies since 1979 and has NEVER seen this cryptococcus neoforman fungus grow from any of his samples he's cultured. Nice! How reassuring! Geez... ! He didn't quite know what to say about it, so he said that he was going to confer with the Infectious Disease. They are the ones anyway that are taking over his treatment for this.
Then Dr Balani from Infectious Disease came in and was very reassuring. She said that usually this fungus is in the form of meningitis, which Nick obviously does not have since he is feeling better than normal and no signs of that disease are present. His spinal fluid preliminary results came back clear and all his organ function tests are normal. They usually see this fungus spread to other organs also. But this would be found mostly in very immunocompromised individuals. (ie AIDS, transplant patient) Since Nick is now OFF TREATMENT for leukemia, his immune system will only get stronger and will help to fight this off. But they also drew a bunch of labs for baseline and to make sure that it didn't spread to anyother organs.
So...what are they going to do? For these first six days we have to go to UHD in Blue Earth and receive Diflucan IV. It is infused over a 2 hour period and then they will keep him an additional hour to observe for any reaction. Then next Thursday we are meeting with Dr Balani again in Minneapolis and to hopefully change to oral meds. She didn't say how long this will last, just depends on how his chest xrays clear up. Also they drew several other labs to have base lines and to make sure it is not in any other organs.
This fungus can be found in the soil and it is originated from pigeon droppings. So it really could be anywhere. Of course, I have all boys, that seem to be drawn to the dirt. Because Nick's immune system isn't the greatest, it affected him.
Please pray that the labs all come back normal and that we can just go through the IV/oral meds and be done with it. Nick is off chemo...he should be able to enjoy it!
Hugs
Sheila
JUNE 5, 2003 8:30pm
Well...just when you think things are on the mend something else rears it's ugly head!
Nick's Onc called today and said that his cultures of his lungs grew out a fungal infection (Cryptococcus Neoformans) and RSV (Respiratory Syncytial Virus)...
So...we have to be to Children's in the morning at 7:30am for a spinal tap to make sure that the fungus has not invaded the spinal fluid. We then have an appt with the Infectious Disease specialist to see what kind of treatment we are dealing with. Our Onc said that it sounds like several weeks of oral and IV antifungal treatment, but we don't know for sure.
I know that you all have been praying for Nick, thank you!....please, please continue to keep him on your list.
Will keep trying to update the site when possible.
http://www.caringbridge.com/mn/nickshope
Hugs,
Sheila
****June 4, 2003 5pm
HI from the Schonrock house!!!! Yeah!
As expected Nick was discharged yesterday around noon. His counts keep getting better and his ANC is up to 580.
We went home with 2 oral antibiotics, Ceftin and Biaxin 2Xdaily...Albuterol nebulizer 4Xday...and Advair inhaler 2Xdaily.
The chest xray that they did on Monday actually looks worse then when he was admitted, but the Onc says that usually the chest xrays are 3 days behind how you feel. By about 2 weeks it is cleared.
We are scheduled to go up for follow-up the end of next week. He will get a chest xray and pulmonary function. We are scheduled to see his Oncologist and Pulmonologist. The pulmonologist is almost certain that we are dealing with asthma also...that is why he was put on the advair inhaler. I have a feeling we are going to have to "UN-ALLERGIZE" the house, which will do all of us good anyway since I also suffer from allergies.
You all are amazing! We are so extremely blessed and grateful to have each and every one of you in our lives. Thank you from the bottom of our hearts for all the prayers and wishes.
Hugs to you all!
Sheila and Chad
Ty, Nick, and Zac
Monday June 2, 2003 4pm
Looks like we are scheduled to come home tomorrow. He's looking pretty good and is clearing out well. He had a chest xray this morning and his Onc said that depending on what that said if he'll come home with one oral antibiotic or two. We haven't heard yet the results.
The pulmonologist came in and is going to talk to his Onc about coming home with a Singulair oral for asthma or an inhaler. We will find out more about that tomorrow too. We have to come back up here for recheck in about 10 days.
Otherwise, everything is the same as yesterday...
His counts:
wbc: 1500
hgb: 10.5
plts: 216000
ANC: 525
So it's looking good!!!
Hopefully the next time I update will be from my soft green recliner in MY livingroom!!!
Hugs,
Sheila
Sunday June 1, 2003 11:30am
Looks like we are turning the corner. Either he is going stir crazy because of being in isolation, or he is feeling better. Lots of smiles and he is sitting up coloring. Big difference from yesterday.
Grandma and Grandpa Bleess and Aunt Tricia stopped by yesterday. He was getting a transfusion at the time. He was very weepy, irritable, and just not feeling well. The transfusion, I could tell, was starting to perk him up about 7pm. He got up and took a bath and brushed his teeth. He then ate some pudding and cereal (Frosted Flakes of course) I think he is going to turn into Tony the Tiger here shortly.
They started him using a Peak Flow last night to try to build up his lung volume again. He is doing rather well on that. His temp has stayed around the normal range. It did go up to about 100 during the night, I guess.
Counts are as follows:
wbc: 1500
hgb: 9.5 ***YEAH***
plts: 142000
ANC: 465
They look good don't they? The transfusion brought him from 6.6 to 9.5, which you can really tell the difference. He also is not using the blow-by O2 any longer and his O2 sats are staying in the late 90s. He is doing a very good job getting all the "crud" out of his lungs, too.
Heather, his nurse practitioner from the clinic came in today and said he looks much better in person and on paper. We are still looking at a couple days yet to make sure that he is OK to be home as we don't want to have to come right back if he gets sick again. They took him off one antibiotic so now he is only on two.
The pulmonologist came in this am and said he is looking better too. The cultures haven't grown anything yet. So that's great!!
I think that is about all. Dad is coming up this afternoon. He is really getting bored with mom!
Thanks for checking in...
Hugs
Sheila
Saturday May 31, 2003 10:35am
Last night was the first night that his temp was normal with tylenol. Prior to that when he had tylenol it would only go down to about 100 or so. He has been eating and drinking. They have been giving him the Tylenol with Codeine prior to his BDs (karate chops) as his lungs may be a little sore from the bronchoscopy yesterday. So...he is a little more groggy than yesterday but still in good spirits.
His counts are as follows:
wbc: 600
hgb: 6.6
plts: 116,000
ANC: 282
So his ANC is rising! Yeah! They are going to give him a packed red cell transfusion today to give him a boost, since it seems to be inching it's way lower. That should make a big difference!
Nothing else really going on. Just waiting for the temp to stay gone and for him to be feeling better.
We'll keep you updated....
Hugs,
Sheila
Friday May 30 , 2003 12:30pm
First... his CT scan came back normal except for the pneumonia of course. That was such an experience. He did sooo good, in fact, I think he fell asleep on the table. They have some cool fiberoptic lights on the ceiling made to look like twinkling stars...very calming atmosphere.
He went in for his bronchoscopy at 9am. Everything went well and Dr Prior, the pulmonologist said that there were no abnormalities structural wise except for his epiglottis is alittle tilted which could be just his anatomical structure or could have been from trauma from earlier procedures. But this doesn't seem to be causing any problem or concern. He went down farther with the bronchoscope and there was a lot of pneumonia "gunk" He then lavaged and suctioned some out and they will be sending to lab to run cultures for TB, viral, bacterial, and fungal. The prelim stains should be back within 24 hours, but the cultures will take at least 48 hours with the fungal one still being allowed to grow for 7-10 days at least.
As for a time to come home? Dr Heisel came and checked him just a little while ago and said that his pulse ox has to be normal, his temp needs to have broken and has to be on oral antibiotics only. So it will be a few days.
So now, I am sitting watching my little one sleep. He seems to be more comfortable with the blow-by oxygen. His temp is about 101. His O2 sat is at 98.
His ANC is increased today from 36 yesterday to 178 today....so we are on the move...his white count went from 300 yesterday to 400 today. His hemoglobin went down to 6.8 from 7.3 yesterday. Still no one is looking at transfusing him yet. Platelets are a little low at about 120,000 but still good as low end normal is 150,000.
Thank you so much for all your prayers...they have worked wonders! We are truely blessed for each and everyone of you!
Will keep you updated as we are....
Hugs,
Sheila
Thurs May 29, 2003 10pm
Nick had a rough afternoon. His oxygen saturation is declining alittle. Right now he is getting alittle blow by oxygen just to help him sleep alittle better. We have to remember that his hgb is low also, so that contributes to the shortness of breath.
Dr Heisel requested a pulmonology consult for today. This was going to be done when he was off treatment, but she said that we might as well do it now then we won't have to try to get in to the clinic. The pulmonologist came by and asked tons of questions regarding history of allergies, house and neighborhood environment etc. He ordered a bronchoscopy to be done on Friday morning at 9am to check out how his lungs look from the inside. This is a procedure where they send a little camera down into his bronchus. If there is any type of mucous down there they will culture to see what type of organism it is and then adjust the antibiotic accordingly. This afternoon he also ordered a CT scan of his lungs to make sure that there are not any other issues that need to be scoped out while they are down there.
His temp has not subsided yet. When the tylenol wears off, it has been hovering between 102-104. It even got up to 104.4 today. Scared the living gajeebers out of me. But they got it under control within about 1/2 hour.
My brother took me tonight to Target to grab some shorts for Nick and some clothes for me as I of course forgot both. Nick had me call him from the toy aisle and read to him what they had so he could pick. He picked out a Hotwheels Metro city police force set up, then of course I had to get him a few other extras.
When my brother brought me back I got out of the car and I heard "Sheila?" It was my cousin. Her son has just been dx with lymphoma and he is inpt too. The wierd thing is that they were in the same room that we are now but had to transfer cuz Nick was coming. They are now right across the hall from us. We had no idea eachother was here until tonight.
Please say an extra prayer tonight for Brian and for Nick...these kids are going through so much right now.
Will let you know how everything is going after surgery tomorrow.
Hugs,
Sheila
Thurs May 29 1pm
Well... we are here. Yesterday evening Nick's temp reached 104 degrees even with Motrin on board. So...we were instructed to go to Blue Earth ER and get Rocephin, Chest xray, counts, cultures. The Chest xray showed some pneumonia over on the right middle lobe too now. So it was decided for Nick to be admitted to Children's in Minneapolis.
We got up here about 1am this morning. He has had a chest xray but haven't heard the results of that yet. He also has to have albuterol nebs every 4 hours and then after that they have to do a procedure called a Bronchial Drainage where they do like "karate chops" on his back to hopefully loosen some of that crap up. It is really painful for him as his muscles and lungs are so sore from coughing and the pneumonia itself. Next time they are going to give him some tylenol with codeine about 45 minutes before to hopefully help. If that doesn't work, then they may do alittle morphine the next time. His pulse oximetry remains good at about 97 on room air, while he is awake. It goes down to the late 80s when he is sleeping. He keeps trying to breathe out of his nose, but that is stuffed up too.
He is on 2 IV antibiotics and one oral. His Onc is leaning toward viral as the antibiotics don't seem to be doing their job.
His ANC today is 37 which it should be about 1000. His hgb is at 7.4. That seems to be a borderline number for transfusion. His Onc is hoping that it will recover on it's own since he is off chemo now.
We for sure will be here a couple days at the least. I will try to keep updating when possible.
This is where we are:
Children's Hospital
2525 Chicago Ave S
Minneapolis MN 55404
Nick Schonrock
Nurses station: 612-874-4877
Room number: 8164
Thanks again for checking in
Hugs,
Sheila
UPDATE WED MAY 28 2003 10am
I talked to his nurse Lee yesterday and she said that I was to wait for about 5 hours before I gave him Motrin to keep an eye on his temp. If that temp was above 101.5 I was supposed to call in. Well...of course it was at 101.7 so I called and talked to the Onc on call and they requested more Rocephin in the ER. So...we went and did that. I was hoping for a breaking temp as this is usually what happens when he gets Rocephin. Unfortunately, we woke up at 3 am this morning with 103.9.
Lee called this morning to see how he is doing. She is going to talk to Dr Heisel and see what she wants to do. She said that she might send him to pulmonology tomorrow to see whats going on since he doesn't seem to be getting any better.
I'll keep you updated...
Thanks for checking in and keeping Nick in your prayers!
***UPDATE*****
Well, the pneumonia is back. His chest xray looked like a little more pneumonia on the one side. Nick's counts have bottomed out, with a ANC of 125 and still dropping. His hgb went from 9.3 at 12 noon today to 8.4 by 6pm. He has spiked a fever and all he wants to do is sleep. We went out to the lake yesterday for a couple hours with Chad's family. I could see him getting more tired and his lips were looking alittle white. And by this morning he was sick...It all happened so fast. He was jumping on the tramp yesterday too.
We went in to the ER about 6pm for IV Rocephin, blood cultures, IV fluids, Chest xray, UA and counts. Tylenol hasn't worked very well keeping his temp down, so we are switching to Motrin. That seems to work alot better and alot longer. His platelets are doing well, so Motrin is OK. He is off chemo now and hoping and praying that this will allow his counts to recover. We are to check in with his Onc tomorrow to let her know how he is doing. We are also supposed to start Zithromax in the morning.
Looks like end of treatment isn't going to go "out like a lamb"...
Please say an extra prayer for Nick tonight for a quick recovery, so he can get back to jumping on his new trampoline!!
Will keep you all updated.
*************************************
Mon May 19, 2003
Hello Everyone!
49 DAYS and COUNTING!!!!!
Nick is scheduled to have his port-a-cath removed, final LP, final Vincristine, final IT methotrexate in Same Day Surgery on Monday June 30th!!!
Today was also and exciting day as Nick received his last Vincristine and port access in the HEM/ONC clinic from his nurse Lee. His last oral chemo will be given on July 7th and then Nick will have the honors of the "Royal Flush" of the remaining meds. Then that will be it! After 3 years and 2 months there will be no more chemo!!!!
Then he will be starting a new phase in his wellness! We will have to go up to Children's for the first three months as he still has to continue his Pentamidine nebulizer for prophylactic treatment for a certain kind of pneumonia. Then after that we will get finger pokes in Blue Earth to get his counts done for every month for two months and then the third month he will go to Children's and see his Onc on a rotating schedule. If there are any illnesses, broken bones, etc he will deal with our local family practitioner. If there are any scares or questions, his Onc will still be there to reassure us or do further testing but our local clinic will be his primary care. The first time he gets a temp, it will be wierd not having to do the normal call the Onc, get counts, IV Rocephin, and blood cultures in the ER....just think of it.....all we have to do is give him TYLENOL!!!!
His Onc will also be referring Nick to the pulmonologist to rule out asthma. This will more than likely lead to allergy testing of some sort also. He has had alot of bronchitis and ear infections, this may be triggered by allergies.
Nick seems to be on the road to recovery. He was dx with bilateral pneumonia and ear infection about 2 weeks ago. He was on Biaxin 2 times a day, Intal inhaler, and Albuterol nebulizer that we do at home. About 4 days ago, he wasn't getting any better, his fever had resurfaced and he was very fatigued, so I called his Onc and they wanted him to get blood cultures, urine, IV Rocephin, and counts done. The tests came back normal and the Rocephin really gave him the boost he needed. His cough is alot looser and is starting to clear with a lot less wheezing than before. We are all sleeping alot sounder nights and Nick is feeling alot more comfortable.
Again,.....we would like to thank all of you! Your prayers and support have made this day possible. And of course, Nick, being the tough warrior that he is...kicked some leukemia butt!!!
We will keep everyone updated on his big END OF TREATMENT BASH!!! At first we were thinking July, but I think it might be wiser to wait until after school starts since Nick will be in KINDERGARTEN this year!
Peace and Love to you all!
Sheila mom to Nick age 5.5 dx preb ALL 5-00 at age 2.5 CCG 1991....will end tx on 7-7-03!!!
Saturday, March 8, 2003 10:12 PM CST
Oh My Goodness...It has been alooooonnnngggg time since I updated. I am so sorry. Everything has been going so well with Nick that there isn't much to update.
When he went for his February visit, he had gained three pounds in one month. He is now 49 pounds and 46 inches tall! Also at his visit, they started to give us a run down of what happens at the end of treatment. I can't believe that we are almost done!! They said we should be able to do the last spinal/mtx/and port removal on the same day which will be the last part of June.
We will be going up again on the 24th of March for his 2nd TO THE LAST SPINAL TAP!!!
We also got a new addition to our family....her name is Paris. She is a bichon frise. They kids have had so much fun with her.
I have updated pics of Nick...take a look!
Thanks again for all your prayers...don't forget to sign the guestbook!!
Hugs,
Sheila
Saturday, December 07, 2002 at 07:46 PM (CST)
WOW!!! Is it Christmas time already??? Time has been just flying by. What's been up at our house? Well, Nick is now FIVE YEARS OLD as of Nov 25th!!!
His treatment is going very well. After his scare with chicken pox, he has recovered with flying colors. He has grown 1.5 inches since August and gained 1.5 lbs! I can't believe how he's grown! He continues with his monthly Vincristine, decadron, zantac....and daily 6-MP....and weekly methotrexate. On some fridays he has to take 11 pills....and guess what? He throws them all in his mouth at once and swallows them...what a extraordinary and brave child!
It feels like we are getting to a stage of the cancer taking a backseat. Never thought we would ever feel that way. But with our Faith in God and the love and prayers from all of you, we know that Nick will survive. We thank God everyday for keeping him strong and healthy.
What about the other two rugrats? Well, Ty is enjoying school and doing very well (a mom's just gotta brag alittle). He's unsure if he is going to wrestle this winter or not. Zac is just somethin' else! Typical "Terrible Two's" at 3.5 yrs. Calgon....take me away!!!
Everyone has been keeping healthy except for the little cold here and there. Nick is just sitting here now and he has his first loose tooth! He's trying to pull it out with a kleenex, but it's not quite loose enough yet. He's so funny!
Nick got a very special gift a couple weeks ago. When he was on the www.makeachildsmile.org website as AUG 00 kid, an organization makes the children hand cross stitched quilts. They are the most beautiful things that I have ever seen. You can see a picture of this quilt at www.lovequilts.org. Then scroll down to 2002 Kids and look for Nicholas S. and click. If you are interested in making quilt squares for the kids, all you have to do is sign up.
Please also visit a couple websites...
www.candlelighters.org
www.anniesflowersandscents.com (Nick's candle and new cookbook)
www.treeofhope Minnesota's Tree of Hope
Peace, Love, and Joy to you this Holiday Season!!
Sheila, Chad
Ty, Nick, Zac
Sunday Sept 15, 2002
Hi All...
Yes, we are home!! The boys are already fighting like normal. We were unsure yesterday morning after we saw the Onc if we were going to be able to come home as his ANC was 288. But by 4pm he had not had a fever and they let us go.
If he has ANY sign of fever we have to go back up. So far, so good.
The plan now? Well...since his ANC is low, we have to stay home and be careful of other infections. He is still infectious also, so we don't want anyone else to get exposed to chix pox that doesn't want to be.
He won't be able to go to daycare again for at least 3 weeks as it is still going around there. Why you ask that we have to keep him out since he has already had them? The Onc said that Nick will still be at risk to get them again since the Acyclovir lessens the effects of the pox, alot of times the children don't build up the immunity they need to fight it off the next time they are exposed. So it looks like we will be back to square one again.
Having to go through this really reminds us how serious his condition is and how easily and fast it can change. We was quite a sick little guy. He has done so well the last 2.5 years that we were feeling like we were getting back to "normal" and then this hit us.
Please continue to keep Nick in your thoughts and prayers.
Love,
Sheila
Saturday Sept 14, 2002
Thanks for all the thoughts and prayers! Today...we get to come home! After only 3 days inpatient!
His fevers have been low to normal and the onc said that she feels he will be fine to go home. He is feeling much better and is returning to his normal self.
His pox all have not crusted over yet, so he is still contagious. His ANC yesterday was 300+ so we still have to be careful of other infections that he could get exposed to.
We are to get counts done on Wednesday and if they are ok he will start back on his chemo.
Please continue to keep him in your prayers!
Hugs,
Sheila
Thursday Sept 12, 2002
Hi everyone..
Well yesterday around 11am Nick's fever was about 101 then about 20 minutes later it spiked up to 103.4. I called the Oncologist and they told us to immediately go to the ER in BE and get Rocephin, cultures and counts and then to go to Children's to get admitted.
So...that's where we are. We got up in our room about 7:30pm and by the time everything was settled we didn't get to sleep til around 11pm. Nick was running a fever from 102-104 most of last night. But since early this morning he is normal or below. He has broken out quite a bit more now and is just starting to itch. He keeps looking in the mirror in his table and making funny and scary faces saying he's a monster. But is laughing about it, which is good he can keep his sense of humor.
The Onc hasn't been in yet today. But as of last night she said expect a 3-5 day stay, but don't be surprised if it is longer. They want to make sure that he is over the hump and feeling better before he goes home. When children with suppressed immune systems get chix pox they have to be very careful that the chix pox does not reach the internal organs. Which could cause pneumonia, neurological problems, etc. We are blessed this hasn't been the case with Nick.
I have updated the hospital info at the bottom of this page with room #.
Thanks for checking in and I will try to keep this updated as much as I can.
Hugs,
Sheila
Wednesday Sept 11, 2002
ATTENTION! ATTENTION!
CHICKEN POX HAS INVADED OUR HOME!!!!
Yes...it was inevitable! Nick has the chicken pox.
Chicken pox in a cancer kid is a very serious thing and could lead to many problems. So we were all quite concerned what was about to happen.
About two weeks ago on a monday a little gal at daycare broke out. Nick was with her the friday before she broke out. I called the Onc and they figured that being it was three days before she broke out, he probably did not get exposed. So they decided not to give him VZIG.
Well...just this past sunday night I had a dream that Nick had all these little red dots all over him. Sure enough, we woke up monday and Nick had little red spots on his neck and just a few on his trunk and legs. A couple of them had blistered and I knew by the looks of them (since I had just had them four years before) they were not bug bites!
I immediately called his Onc and we were told to come to Childrens right away and they would put him on IV acyclovir (which is supposed to help lessen the symptoms) When we got up there and the Onc looked at him he was not convinced that they were chix pox. There were no visible blisters at this point, only red dots. He decided to give him oral acyclovir instead of IV. If it didn't progress to chix pox we could discontinue treatment.
Tuesday he broke out with a low grade fever. By tuesday night he was itching and a few more blistered spots were evident.
Now it is Wednesday and he is definately peppered. Not near as much as I would have expected. The acyclovir must be doing it's job. Yeah!
He is off chemo for a week or so. Depending on what his counts do next week.
Nick had to miss his preschool open house last night as he starts next Tuesday. Hopefully he will be feeling better and will be able to go to his first day.
Please keep Nick in your prayers that he recovers from this with lightening speed and flying colors!
PLEASE, DON'T FORGET TO SIGN OUR GUESTBOOK, WE LOVE TO SEE YOUR WONDERFUL WORDS OF ENCOURAGEMENT AND LOVE!
PEACE AND INSPIRATION...
SHEILA
Saturday, July 20, 2002 at 07:46 AM (CDT)
You know...there is not much to update. Nick is doing wonderful. The last time we went to the Onc his ANC was over 3000....so they increased his 6mp and his decadron.
But that is it!!! Nothing happening here!
***2002 RELAY FOR LIFE*******
Friday August 9, 2002
Faribault County Fairgrounds
Blue Earth, MN
United Clinics has a team again this year
"The Arms of Hope"
If you would like to donate or purchase a luminary for
your loved one...please contact me.
Hope everyone is having a great summer! It is going by way too fast.
Peace and Inspiration,
Sheila
Saturday, May 04, 2002 at 08:16 PM (CDT)
Hidey Ho Good Neighbors!!!
What's up in the Schonrock household?? Well...the boys are growing up so fast we are starting to feel how small our house really is! When all three of them get wrestling around on the floor, it sounds like a herd of elephants being chased by a mouse! :0)
Ty is getting excited for summer and NO SCHOOL! He has several activities this summer...Church camp, swimming lessons, and baseball. Then he also goes with his Grandma Suzie and Grandpa Lafe to the cabin in August. We are hoping to take a trip up to my dad's in July for a family reunion.
Nick is done with Sunday school and preschool for this year. Next year he will be in preschool 2 days a week. He will stay busy this summer at Sue's Daycare and Grandma Karen's. He is still getting his oral chemo everyday at home and then he goes to Children's once a month, and every 3 months he gets a spinal with intrathecal methotrexate (chemo).
Zac just turned 3!! I can't believe it! He has changed so much in the last couple months. His sentences are full and he is getting his point across very well. He will be starting preschool in the fall...attending once a week. Plans for the summer are for him to be at Sue's Daycare...he loves it there. She has a dog, a puppy, two cats, a goat,and a pig. She lives in the country in case you were wondering. It is so good for the kids to be out on a farm.
We go to Children's on Monday May 6th....
He has his clinic visit which consists of Vincristine in his port, PE, counts, and his pentamidine nebulizer (prophylactic antibiotic for pneumonia). He does real well with this.
MAY 6th IS NICK'S 2 YEAR ANNIVERSARY OF DIAGNOSIS........Look how well he has done and how far he has come! Check out the pic on the photo page and see how he has grown and changed in the last two years!! That darn Meanie and Munchie pill (Decadron) sure gave him a moon face in the beginning of treatment when he was on it for 4-5 weeks.
Thanks for checking in and keeping Nick in your prayers!
Don't forget to sign the guestbook each time you visit....we love to see who is checking in on Nick's progress!!
Peace and Inspiration...
Sheila
Monday, April 01, 2002 at 06:46 PM (CST)
Hi Everyone...
Boy...it has sure been awhile. I couldn't believe my last entry was in December. Sorry folks! When there isn't much to update the time just flies by.
Nick is doing great!! His counts have been perfect and he has been feeling well. I guess I should say until last weekend. He got a little of the viral crud and then his ear began to hurt. Took him in today and it's just a little ear infection. She put him on some Zithromax and he should be ready for his spinal tap and chemo on monday.
Over the last couple months Chad and I have both had a little vacation. In February, he went to Dallas, TX for schooling. Which wasn't very relaxing as it was for his microsoft certification. He was gone for 2 whole weeks! Boy, was he missed. Then the middle of March I went down to San Diego, CA. Mine was actually VACATION. My dad, brother, and I went. We were scheduled to fly out on a Thursday night, but we got that big snowstorm and they cancelled our flight. So we only got to spend four days instead of five (boo hoo). It was just beautiful! I can't wait to go back. We were there meeting my Dad's birthfamily and they were so warm and welcoming. Chad and I hopefully will be able to take a short belated (9.5 years) honeymoon next fall.
That's all for now...
Hugs,
Sheila
Saturday, December 15, 2001 at 10:52 PM (CST)
Happy Holidays!!!
I can't believe that it is already Christmas! The year has just flown by. Plus, we have no snow here in our part of Minnesota! The grass is still GREEN!! I wish we would at least get a white coating for Christmas...doesn't look like I am going to get that wish by the way the weather guys talk.
We had Christmas today with the Mohr side. Grandpa David and Grandma Kathy came down to Great Grandma Gertrude's for brunch. We had a wonderful time and the boys brought home tons of new toys. We were about ready to eat and Nick said that he didn't feel good. I felt his head and sure enough, he had a fever. We ate and then had to leave early. Nick and I came home and took a nap. By 8:30pm his temp went up to 102.4. Sooooo....to the ER we went for IV Rocephin, CBC, Blood Cultures. His counts look good and his physical exam was unremarkable. So he has the same CRUD that everyone else in this family has been fighting.
Tyler had severe croup about 1.5 weeks ago, then Zac and Nick started getting a cold...then a couple days ago, I got a raging cold/sinus infection. Now Nick's must have just exploded. I wish it would just freeze hard to get those darn bugs that are causing everyone to be sick.
Nick was supposed to have his Church Christmas concert tomorrow, but he will have to miss it. I am a teacher, so I have to be there to help with the kids...hopefully I will be feeling up to that. Tyler has his Christmas Church concert tomorrow night and his school one on Monday night. He is Joseph in his class's portion and has to sing a duet with Mary.
Nick goes to Children's on Monday for his monthly Vincristine and his Pentamadine (antibiotic nebulizer). He totally hates the nebulizer!
I better get to bed as we have quite a busy day tomorrow...
Thanks for stopping by to see how Nick is progressing.
You are all so wonderful...we will never be able to repay all the kindness you have shown to us.
Love,
Sheila and family
Thursday, November 15, 2001 at 05:26 PM (CST)
Hi!
Well after I got several hints that I needed to update, I thought I'd better get to it. This fall has been pretty uneventful and not much to update...UNTIL this week.
Nick has been fighting a cough and temp for about the last 3 weeks. His counts a couple weeks ago indicated it was probably viral. But since he kept spiking temps of 101-103.5 he had 3 trips to the ER, 3 port accesses, 3 counts, and 3 IV Rocephin infusions last week. We thought he was on the mend, then last Thursday his cough changed. They put him on Suprax (antibiotic) on monday of this week. He broke out with an allergic rash on Tuesday from that. Yesterday Mom took him in for the rash and to check his lungs again as I was in Rochester for a meeting and a chest xray was done and we found out he had pneumonia. So....he is still off chemo for the 3rd week. They put him on Zithromax now and he is tolerating that well. We are scheduled for his monthly check on Monday Nov 19th. Hopefully he can get over this and not have to go inpatient.
Been quite busy around here....this year the kids and I are making all our Christmas gifts so you can imagine what my house looks like! I am home with Nick until he gets over this, so hopefully I will get some things done anyway. We are praying that he will kick this quickly...he will be celebrating his 4th birthday on the 25th!!
I better go and do the Mommie thing...it's supper time, ya know!! And with 4 boys in the house, I better have food for them!!
Peace and Love,
sheila
Sunday Sept 29, 2001
Hello...
Been a busy household this summer for us. As I am sure everyone of you had a fun-filled one too! We are just trying to get back into the swing of things.
Tyler started 2nd grade this year and is doing well. Nick started Sunday school and preschool. He is doing a lot better adapting to that then I thought he would. Although, it does help when I am one of his Sunday school teachers. Zac, well, he is still a mommie and Sue's little boy for at least another year! Betcha can't wait, Sue, for that day!! :0) Zac is known as "The Master of Disaster" so that should explain it ALL!
Nick had a couple weeks where his counts were low and his chemo was cut in half. Dr Heisel decided to take him off his Bactrim (prophylactic antibiotic for a certain pneumonia) since it causes low counts in some kids. They switched him to a monthly inhaled antibiotic given via nebulizer. He didn't like the first treatment very well...but his counts are recovered and he is back on full chemo.
Zac had been experiencing lumps on his head. We have come to the conclusion that he must be really sensitive to some kind of insect bites. Scared my pants off, though, as they didn't look like bites. Took him to the ER to check it out and they ran a CBC without me even asking them to, it came back normal. The lumps go away within a day or so. And he is his crazy, active self. We're just supposed to keep an eye on it.
I have started a website for Nick's MAW trip. The link is at the bottom. Please let me know if you cannot access this. Geocities only has a certain amount of data transfer that a free site can use. Please email me at the email below if ther eis a problem.
Nick's Hope team raised $675 for the Leukemia and Lymphoma Society's Light the Night Walk that was held on Sept 21st. Team members were Chad and Sheila, Ty, Nick and Zac, Chad and Tricia Hagedorn (Nick's Godparents), Jen Zabel (Nick's Godmother) and Jess Hanevik (Friend of the Family).
A special congrats to Jen as she raised a whoopin' $400....Way to Go Jen!!!
Also...I would like to Thank United Clinics of Faribault County as they donated an 8-hour paid day off to the winner of a raffle. We sold tickets for $5 a piece and made about $200 from the clinic employees for the Light the Night Walk. Congrats Susie on winning the day off!
The night was beautiful..we walked around Lake Phalen at dark with lighted balloons. Red balloons were for contributors and the White were for survivors. Then we stayed at Chad and Tricia's and came home on Saturday morning.
****Check out the Faribault County Register...There is an online article on Nick's MAW Trip. They ran a series the month of September for Childhood Cancer Awareness Month. Thanks Sara!
www.fcregister.com
Then click on "Featured Stories"
Then scroll down til you find "Brave Little Soldier"
****NICK's APPLE N ORANGE SPICE******
A wonderful Cancer Mom has given Nick the honor of being a featured kid on one of her candles...Check it out!! I already received mine!
www.anniesflowersandscents.com/candles_for_the_kids.htm
There are lots of new scents at Annies...the candles are awesome and decorated so beautifully! Great Christmas Gifts!!
Thanks for checking in!....Don't forget to sign the guestbook!
Love
Sheila and Chad
Ty, Nick and Zac
Monday, June 11, 2001 at 07:58 PM (CDT)
Hi...
Well, Nick ended up going for his monthly clinic visit a week early because of the anticipated Nurse's strike. Everything went well. His counts were great. His ANC has been running alittle on the borderline low side at 842. We have to get counts again this week. His Onc said that we may have to take him off his Bactrim (prophylactic antibiotic for pneumonia) and put him on a different kind which is given through a nebulizer. One of the side effects of the Bactrim is low counts in some kids.
Last Saturday we went to the Summer Picnic for Children's in the Cities. It was very nice...quite hot, though. The kids got to play games, face paint, etc. It was a nice outing.
Nick is growing up way too fast now! His vocabulary is unbelievable. (Although there are some words that I would rather not hear coming out of my sweet 3-yr-old's mouth.) He is getting quite a bit taller and gaining weight like he should. He looks great! He is potty trained now and doing very well! Now only one more to go! Yeah!
Tyler is so excited that school is finally over for the year. He is now a proud graduate of first grade. We just found out that he will be getting his tonsils out on July 9th. He has had 3 positive strep infections last winter. He was a little nervous when our NP suggested he see an ENT. But there was his little brother, Nick, saying "It will be OK Tyler" He is better with the idea now since we keep telling him he'll get lots of popsicles and presents! :0)
Zac is known to us around here as "The Master of Disaster"...man, I can really tell I'm getting old. He is growing up so fast too. He is starting to talk pretty good now and is very very stubborn!! He must take after his dad! :0)
As for Chad and I....we're hanging in there. Looking forward to a night in the cities this weekend with no kids! Thanks Grandma Joyce and Grandma Karen!!
Thanks for all your continued prayers!
Hugs,
Sheila
Wednesday, May 23, 2001 at 09:08 PM (CDT)
Hi All...
I know that it has been awhile...just been so crazy around here. Nick is doing well. He is back on 100% chemo. It took quite some time for him to recover from his mystery fever.
Tonight Make-a-Wish came to interview Nick for his wish. It looks like we will be going to Disney World or Disney Land which ever has Buzz Lightyear! They brought bags of goodies for each of the boys. I was surprised that Nick even talked to them, but the presents really broke the ice. It will be a 6 day, 5 night stay. Oh...the boys will be so excited! We don't know for sure when, but they will keep us posted!
Nick is scheduled for a clinic visit on Thur June 7th.
Thank you for your continued prayers...We love you!!
Love,
Sheila and Chad and Boys
Monday, April 23, 2001 at 09:58 PM (CDT)
Hi Everyone...
There is not much to update. Yeah!! Nick has recovered from his "mysterious" fever, but he is still on 50% chemo. Which means his counts are staying within tx range with only 50% of protocol chemo for his weight/age, etc. I guess this isn't bad as long as they keep his counts where they should be.
We go up to Children's on May 1st for his every 3rd month spinal and IT MTX, Vincristine, and counts. They will then adjust his chemo according to his counts. Tyler is going with us this time and has an appointment with the hospital psychologist. He has been acting out a bit since Nick's diagnosis and he has told me before that he is scared Nick might not win this battle. When Nick was dx we were having troubles dealing with our own feelings that having that kind of talk with Tyler was too heartbreaking. We did discuss what was happening with Nick and Ty is so smart he will tell you all about platelets and what they do, white cells, spinals, chemo, hair loss, etc. But as far as the emotional aspect of it...it was just easier not to deal with it. So hopefully this will help him feel better.
Saturday we are going to the Crappie contest that the Leukemia and Lymphoma Society is putting on at Lake Minnetonka. The boys get to ride in a boat with a Pro and fish. They are so excited! I think Chad is more excited than Ty or Nick. We are going to go up to Chad and Tricia's on Friday night and stay over and then they are going with us on Saturday. It should be a fun day and the weather forecast looks beautiful...but you never can tell in Minnesota :0)
Nick has been doing well with his potty training. We had decided to wait until he got into maintenance to begin as not to overwhelm him when he was going through his intense treatment. I went out and bought him some hotwheel, pokemon, and scooby doo underwear! He really liked them!
Well...that's about it for updates. Thanks for all your support...it means the world to us!
Hugs,
Sheila and Chad
Ty, Nick, and Zac
Sunday, April 08, 2001 at 06:00 PM (CDT)
YIPEEEE! YAHOOOOOOOOO! Boom Chicka Boom!
We got Nick's counts done today...
Here they are:
wbc: 3.3
hgb: 10.7
plts: 224,000
and.....ANC, are you ready for this???
1155!! :0)
He is so ready to go back to Sue's Daycare to see all his friends. I will return to work tomorrow also.
Thanks for all your prayers!
Hugs,
Sheila and Chad
Ty, Nick, and Zac
Wednesday, April 04, 2001 at 06:07 PM (CDT)
Hi Everybody!!
Well, we went up to Children's yesterday and everything went well. Nick now has decided that he doesn't want to put the Emla on his port. (Which is a numbing medicine to help with the stick of accessing his port). He is such a brave little boy! He didn't even flinch or shed a tear. I was so proud of him.
He got his Vincristine and his counts done. Before we left we got the first half of his counts which were:
wbc: 4.0
hgb: 10.2
plts: 268,000
So we were pretty happy to see that white count. We got in the van feeling pretty good. We conquered this virus. Take a deep breath and relax.
When we got home I was just about to call my daycare Mom and my boss to let them know I would be there wednesday. The phone rings...it was Lee. She said I'm sorry to tell you that Nick's ANC is only 200! Arghhhhhh! She said the virus must have kicked him harder than we thought. They were going to put him back on oral chemo 1/2 dose last night. But...since his ANC is still too low, they kept him completely off. Nick has to get counts again Friday or Monday.
Please keep praying that Nick's ANC comes back.
Hugs,
Sheila
Saturday, March 31, 2001 at 04:52 PM (CST)
Well Hello!
Nick has been FEVER FREE since Tuesday! It is so nice to have him returning to "cancer kid normal".
His counts yesterday were improving quite a bit. We still need to do a little jig to get those neutrophils up.
wbc: 3.8
hgb: 10.4
plt: 288,000
ANC: 304
He continues to be off chemo. We go to Children's on Tue April 3rd. He will get his counts done again and hopefully they will be high enough to start back on his daily 6mp. He will get Vincristine via his port also and start the "meanie and munchie" pills. Eeeewwwwww!
Thanks for keeping Nick in your prayers!
Hugs,
Sheila
UPDATE...MARCH 28, 2001
NO TEMP FOR THE LAST 2 DAYS!!!! Yeah! Thanks for all your prayers. His counts continue to be very low but he is feeling much better and is hopefully on the upswing of this mysterious fever. Now we are just hoping that his marrow starts kicking in. He has to stay home until his counts do rise. So Chad and I are taking turns going to work and staying home. Thanks for checking in and we will keep you updated.
PM UPDATE.....March 26, 2001
Well, Nick had a below normal temp when we took him in to our local clinic at 2 pm. But...this was after having motrin at 8 am. His strep culture was negative. His physical exam was negative. Blood Cultures will take 48 to 72 hours to grow. They gave him Rocephin today too. Here are his counts compared to last Wednesday:
wbc: from 1.1 to 3.9
hgb: from 9.6 to 8.7
plts: from 153 to 129
ANC: from 600 to 100
So....he has to have his mask on when we go in public. He actually looks better today. He was acting better too. We gave him Motrin, like I said before, at 8 am....and then we took his temp tonight at 7pm and he was at 100.4. So this is an improvement on the temp. Hopefully tomorrow morning he will wake up with normal temps.
Our local docs want to give him Rocephin on Tue and Wed. I will talk to his Onc tomorrow morning about what they think about the counts.
I will keep you all updated. Thanks for all your prayers.
**************************************
UPDATE.....March 26, 2001 AM
Nick is still running temps ranging from 100.5 to 103....We are going back in to our local clinic to get blood and strep cultures, counts, and more Rocephin. He does seem alittle better but to have a temp like that for 6 days constitutes more labs. We were OKd to switch to Motrin and that has been controlling his temps alot longer.
Please keep him in your prayers that this fever is wiped out soon!
**************************************
Hi Everyone!
Well, we kind of hit a bump in the road. On Wednesday morning Nick woke up with 101.3 temp. He has no other symptoms besides the fever. We called his Onc and they had us go to Dr Cahill here in BE to get checked over, CBC, and blood cultures.
When we got to the lab, I had forgotten that they needed more than a finger stick. They were going to draw him in the arm and I asked them to find Ronda to access his port instead. Thanks Ronda! He did real well getting it accessed here. Then we went out to the clinic and Dr Cahill couldn't see any ear, throat or other infection. The cultures as of last night were negative. And usually the lab will call if something comes up. He got a shot of rocephin on Wed afternoon and by Thursday I thought he was doing better. But this afternoon he spiked up to 103.5 under his arm. Yikes! So I called his Onc again. Dr Smith said that as long as the cultures are negative, and he has no other symptoms that it probably is viral. If the temp is not gone by Monday we are to go back in for more cultures.
Nick's counts were on the low side:
wbc: 1.1
hgb: 9.8
plts: 153,000
ANC: 600
We are off Chemo now until his counts recover.
Tyler celebrated his 7th birthday yesterday. Tonight he has Jake over night and we had pizza. They are now telling me they are going to stay up all night! We'll See.....
Zac is on antibiotics for ear infection too. So, this is a real happy household the last couple weeks.
Please pray that Nick and Zac both feel better soon.
Hugs,
Sheila
Sunday, February 25, 2001 at 04:57 PM (CST)
Hi Everyone...
Not really too much to update. We're scheduled to go for Nick's monthly check at the clinic on March 6th. All is well here. I am putting a couple updated pics on...take a look...the boys love to play in the snow.
I would like to post the following writing in honor of all of my fellow cancer moms! Warm Hugs to you all...
Why Us?
Most women become a mother by accident, some by choice, a few by habit. Did you ever wonder how mothers of children with cancer are chosen?
Somehow, I visualize God hovering over the earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger...
"Armstrong, Beth, son, patron saint Matthew."
"Forrest, Marjorie, daughter, patron saint Cecilia"
"Rutledge, Carrie, twins, patron saint Gerard. He's used to profanity."
Finally, he passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a child with cancer a mother who does not know laughter? That would be cruel."
"But does she have patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."
"I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."
"But Lord, I don't think she believes in you," said the angel. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them."
"And what about her patron saint?" asks the angel, his pen poised in mid-air.
God smiles and says,..."A mirror will suffice."
author unknown
Love,
Sheila
Saturday, February 10, 2001 at 09:25 PM (CST)
Hi All...
Today was the Holiday Stores/Leukemia and Lymphoma Society's Walk at the Mall of America. The total as of this morning for funds raised was over $207,000.00...Way to go everyone!
"The Arms of Hope" went up to the cities friday night and stayed in a motel. We went to Planet Hollywood for supper and then returned back to the hotel for some well-deserved Zzzzzz's. We had to be at the mall at 7 am. When we arrived I was so overwhelmed with all the people. We checked in and then had breakfast. We walked all three levels of the mall which was about 3 miles. Then there was a program at about 9 am.
Pat Ebertz, who is one of the Air Personalities from KDWB 101.3 was one of the hosts. I have to back track a little and tell you the story about this great radio station. In December of 2000, KDWB had a Holiday Wish Request Contest. Our very dear friend Shari wrote in and said that her wish was for my boys to receive Christmas cards from people in the mail. Her wish was granted and the boy's first names and their PO Box got put on their website and was announced many times over the air waves. Well Pat Ebertz was one of the personalities that was a part of this. So when I saw that he was there I just had to thank him so much for ALL the over 500 letters and cards the boys received. I introduced myself and he knew who I was and was very compassionate and sincere. I'll post the snap shot I got of him and I when I get it back.
A special thank you to the members of the
"ARMS OF HOPE"...
Becky
Jessie
Karen
Chris
Jamie
Andrea
and me...
It meant alot to me that you were there.
Thank you for all that donated funds and services! You are all great! Our final total was $1395.00.
Monday Feb 12th I will be at the MN State Capitol visiting with our legislators representing the Faribault County Chapter of the American Cancer Society. There will be one other gal going from here too. We are looking forward to our personal meetings with our reps.
Warm Hugs,
Sheila
Tuesday, February 6th, 2000
Hello Everyone!!
Finally got a chance to update the site after our visit to Children's on Feb 1st. It's been quite crazy around here lately.
Everything went well. Nick had a spinal tap, IT Methotrexate, Vincristine, and his counts done. Since he hasn't had to have a procedure for 3 months he had a hard time coming out of anesthesia. In the recovery room, I guess he ripped his allergy band off and he was very testy with us too for about 1/2 hour until it wore off. After that he was fine.
Counts were:
wbc: 3.0
rbc: 3.71
hgb: 11.6
plts: 249,000
ANC: 1000
So as you can see...we are good to go. He is feeling very well. Although, we did start the "meanie and munchie" pill last Thursday and just gave the last dose this morning. He is quite irritable and is starting to want to eat alittle more now.
We have to go back up to Children's in one month for a clinic visit.
Thanks again for all your support and love...you are all true angels to us!!
Love and Hugs,
Sheila and Chad
Ty, Nick, and Zac
Monday, December 25, 2000 at 08:30 AM (CST)
Merry Christmas Everyone...
This year has been a rough one for us. But with Nick's diagnosis has come a renewed faith in God and an extreme appreciation for the blessings in our lives.
We would like to thank all of our friends and family who have helped us along the way. You are all a very special part of our lives. The power of all your prayers has lifted us up and carried us, giving us the strength to get through every up and down. Fortunately, Nick has not had very many "downs" at all. We have been very blessed, there are too many out there that do not handle treatment this well.
As we approach the year 2001 we continue to appreciate each day as a gift. We want to wish you all a safe holiday and one that is filled with love, laughter, and warm hugs!!
Sheila and Chad, Ty, Nick, and Zac
Friday, December 01, 2000 at 06:22 PM (CST)
Hi All...
I hope everyone had a wonderful Thanksgiving. I can't believe that Christmas is upon us already! This year has gone so fast.
Nick had his monthly appointment yesterday. We had to be up there at 9:30 am. The weather cooperated with us and we returned home about 3 pm. He had to have his Vincristine (chemo) IV push through his port and his counts done. We were so excited that Amy was able to be Nick's nurse in the clinic that day. (Now, we have 2 Amy's that are close to our hearts from there. This Amy is the one that spent ALOT of time with us during initial inpatient in May.) We got a pic of Nick and her so I'll post that when I get them back. This was the best he has done with his port access. Not even a flinch. This was so strange for Amy since when Nick was first dx she couldn't even pull his shirt up without a BIG struggle. Since Ty was dx with strep throat on Monday, they decided to prophylactically treat Nick with antibiotics. Chad also came down with a sore throat yesterday and is on antibiotic too.
I don't have Nick's counts in front of me, but I can give you an approximate.
WBC: was 2.0
hgb: was 10.3
plts: over 200,000
ANC: over 1,100
What's up for December? Well...Nick will have a ribbon on the first Childhood Cancer Awareness The Tree of Hope that will be lit on Capitol Hill on Dec 15th. It will consist of over 1000 gold ribbons each representing a Childhood Cancer Survivor or a Precious Little Angel that lost their life to this beast.
You can read more about the Tree of Hope on:
www.goldribbons.org
Also, in December Nick is going to be a poster child for the Thank you for your Donation postcards that the Leukemia society sends out to donators.
Tyler has his church Christmas program on Dec 17th at 4 pm at Trinity Lutheran in town here. Then he has his School Christmas concert on Dec 18th. I am unsure of the time for that.
We are due up to Children's again on Jan 2nd at 11 am. Jessie (a good friend of our family) is going to go up with us. She wants to see what all goes on at these visits. Also that is Tuesday and Robert Smith...one of the MN Vikings, usually comes to visit the HEM/ONC kids that day. So hopefully we will be able to be there long enough to talk with him and get a picture. I think this will probably more exciting for Me and Jessie! Go Vikes!!
Please check out the following websites if you have time...
www.goldribbons.org
www.leukemia.org
www.cancer.org
www.makeachildsmile.org
Take Care...
Peace, Love, and Warm Hugs,
Sheila and Chad
Ty, Nick, and Zac
Tuesday, November 21, 2000 at 02:42 PM (CST)
Ok, I suppose I should update since I have been getting emails telling me to do so...aaahemmm!
We got Nick's counts done last Friday (11-17) They all were really good. Although I have the results at work, I can tell you a ball park range...
WBC: about 3.5
Hgb: was 10.8
Plts: were over 200,000
ANC: was over 2,000
I called Children's on Monday to make sure Lee got the fax of the counts and Joan called back and said that Lee was on vacation for 2 weeks and that she would check to make sure they were there. I also asked her if they had to up his 6mp because his ANC was so high. She said that they will wait and see. If his ANC is consistently high then they will look into it. You see, they want his ANC to hover around 1,000 during maintenance. But since he is at 100% chemo they are going to leave it for now.
Saturday we got to go to the airport in Minneapolis to pick up Auntie Kay. Tyler and Nick went with along with Grandma and Grandpa Bleess and Cathi D. The boys had a blast seeing all the big airplanes! Thanks to Grandma Karen the boys and I got escorted by Captain Rick and his Co-pilot Ron into the cockpit. Nick was pretty scared as it is so enclosed and it was pretty loud. Rick showed us the big engines and Tyler sat in both the pilot's and co-pilot's seat with Ron telling him what all the controls were for. We got a couple pictures so I'll have to put them on the site when I get them developed. Thanks also to Northwest Airlines for allowing us to do that.
Zac is now sick and on medicine! It never ends around this house. He has double ear infection and double pink eye. He looks pretty rough, the poor duffer.
We are due for our monthly check on NOV 30th. Hopefully the weather will cooperate!
Take Care...Happy Thanksgiving..We all have so much to be thankful for!!
Love,
Sheila and Chad
Ty, Nick, and Zac
Friday, November 03, 2000 at 11:41 AM (CST)
Hi..Happy Friday!!!
Ok, now I am doing the HAPPY DANCE! Boom, Boom, Chicka..Boom...Oh, yeah! Yeeehaaaaw! Now we can do the dance together. Kat, Kirk, Matt, and Lane are you with me? MAINTENANCE!!!
We were up at Children's yesterday and everything went great. Nick was awesome and he was so strong. Hardly even a flinch when they accessed his port. We did not need to have a BMA yesterday since Nick is not considered "On Study".
So, he had:
SPINAL TAP..to make sure there were no leukemia cells.
IT METHOTREXATE..chemo med into spinal fluid.
VINCRISTINE...chemo IV push through his port.
THE VINCRISTINE AND COUNTS WILL BE DONE ON A MONTHLY BASIS NOW IN THE CLINIC EXCEPT FOR EVERY THREE MONTHS HE WILL HAVE A SPINAL AND IT MTX.
Counts yesterday were:
wbc: 2.7
hgb: 10.0
plts: 406,000
ANC: 729
***********************
Ok, now this is what he takes at home...
DECADRON (steroid)....2xday for the first 5 days of every 28-day cycle...this continues until tx is over on July 7, 2003!!
METHOTREXATE...5 pills one day a week..this continues until tx is over on July 7, 2003!!
6MP....one pill at night for 6 nights and then a half pill on night 7...this also continues to the end of tx..July 7, 2003.
BACTRIM....2 days a week...Again..until July 7, 2003.
ZANTAC...given same time as the Decadron for tummy upset.
I think that is it.. Don't worry Sue, there won't be anything that you need to give him at Daycare!!
I am going to try to go back to work starting on Nov 13th. Just on Mon, Wed, and Fri to start with for awhile. It's going to be hard to keep track of everything. You should see my house. I have calendars everywhere, my own in-bin, filing cabinet, etc...There is so much stuff that needs to be kept and filed and sent in...Keeping up with whats going on with the medical bills is just a full time job in itself.
Yesterday we also got to meet Rachel. Rachel is one of the runners for the Leukemkia and Lymphoma Society's Team in Training. She is such a sweetheart. She also coordinated a fund raising effort in Minneapolis and raised over $7000 for leukemia and lymphoma research!! Way to go Rachel..and thank you! Unfortunately Nick was in recovery when she came to visit. Next time we are going to connect so they can meet.
Until next time...
Love,
Sheila and Chad..
Ty, Nick and Zac
Wednesday, November 01, 2000 at 04:29 PM (CST)
Hello to All...
Trick-or-Treat!! We all piled in the van last night and did our rounds. Zachary was a bee, Nick was Oscar the Grouch, and Tyler was a Vikings Fan. We went out to Richard Reinke's to see Mary dressed up as a penguin. The boys and Dad got their pictures taken with her and Richard. Then we went to Frost to see Grandma Mohr and then back to Blue Earth to make the rounds there. The kids had a great time. We went to Grandma and Grandpa Bleess' last and Nick fell and hit his head. They were all getting tired and plus they were on a big sugar high!!! We had to skip going to Grandma Susie's at Delavan.
We got Nick's counts done today...
wbc: 3.1
Hgb: 10.3
Plts: 526,000
ANC: 961
So, we are scheduled for tomorrow morning at 8:30 at short stay at Children's. Nick will have to have a Physical, counts, bone marrow aspiration (BMA), spinal tap, with intrathecal methotrexate introduced into spinal fluid, Vincristine through his port, start oral 6mp at home, start 5-day pulses of decadron every 28 days, oral methotrexate once a week, and Bactrim 2 x a week. But this is the starting of MAINTENANCE!!! Which will consist of going up once a month. As I look at the protocol, there is not another spinal or bone marrow needed. (within the next 84 days, anyway. I don't have the rest of the protocol) So we will just be going up monthly for Vincristine.
Nick is feeling well. He is running all over and has become quite an opinionated little thing. We have to make sure we have the right kind of cereal in the cupboard and use the right kind of bowl. He is craving sweets alot lately. Although Grandma Karen said he ate a whole bag of little carrots and veggie dip. I was surprised we didn't have to dress him up like a pumpkin for trick-or-treating for as orange colored as he could have gotten.
We'll update you when we get back.
Take Care,
Love,
Sheila and Chad and boys
Thursday, October 26, 2000 at 08:33 AM (CDT)
Good Morning All!!
Nick was supposed to start maintenance yesterday but, as expected, his counts were too low yet.
wbc: 1.9
rbc: 2.5
hgb: 7.2
plts: 335,000
ANC: 285
So it looks like we wait to do counts next week again and hope his counts recover.
Will update when we know something more.
Love,
Sheila and Chad and boys
Friday, October 20th, 2000...11:00 am(CDT)
Hello...we're back!
It was a long day yesterday. We left Blue Earth at 6 am. We were at the clinic by 8:30 am. Nick had his packed red cell transfusion and everything went fine. We were there until 3:30!!! By the time they got the blood drawn and typed and cross-matched....the blood actually to the hospital...and Nick's exam done it was 11:30 am. It takes a couple hours for the transfusion.
Nick's counts were...
wbc: 2.0
rbc: 1.98
hgb: 5.8
plts: 60,000...transfuse at 20,000
ANC: 1220
These are before transfusion. Now his red cell tank in full...hopefully the platelets will start rebounding so we don't have to make another trip.
We have to get counts done at UHD next week and see where we sit. We just have to watch for bruising, nose bleeds, gums bleeding, petechia to make sure we get him a platelet transfusion if needed.
Thank you for all your prayers!! He's doing Great!!
Hugs..
Sheila and Chad and boys...
Friday, October 13, 2000 at 09:10 AM (CDT)
Hello! :0)
Just a little update on our treatment yesterday....
We got up to Wasie on Wednesday night about 8:00 pm. When we turned into the entrance, there was smoke billowing out of the parking ramp and fire trucks. Nick was excited to see those. We parked in unloading and checked in. Chad ended up having to park at Children's which is a couple blocks away. Then..he decided to walk back and not use the tunnel. So I was biting my nails the whole time he was gone. Relief came when I heard him open the door to our room. Where Abbott and Children's is located is in a "not-so-nice" area of Minneapolis.
Then we had pizza delivered and relaxed for a while. Nick had to be at Children's at 8:30 am on Thurs. When we got there they were really busy. Usually there are 2-3 kids in our wing waiting for spinals and chemo, but today there were 6. We had to wait a couple hours before we even got hooked up to an IV..and Nick couldn't eat before his procedure and his proc wasn't scheduled until 11:00 am...so he wanted FOOD! The procedure went great and he was eating jello by 12:15 pm. We had IT MTX, spinal and was given Zofran and Ara-C.
His counts are low now. He was given Cytoxan the week before and that causes the counts to drop between 7-14 days depending on the kid. So his counts will drop more as the days pass. The nurse said that he probably won't need any transfusions, but we have to wait and see. The next couple weeks we need to be very careful that he doesn't catch anything because we will probably end up inpatient if that happens.
WBC: 1.3
RBC: 2.77
HGB: 8.2
Plt: 115,000
ANC: 728
We only have to get counts done at UHD on Thursday of next week, see how they are. We are starting another 4 days of Ara-C (that's the one we give IV at home) and he is still taking his oral 6tg for another 7 days. His Bactrim 2 X week. And then we wait until his counts recover and his ANC is above 1000 and his plts are over 100,000...Then we start maintenance, which is monthly visits to Children's..We will be through the intense stuff!!!! Yeah!!!! We all need a break!!
What are we going to do this weekend? I think my dad is coming over today before he returns to his home in Cornucopia, WI. He has been down to help with harvest. Then Saturday I will more than likely ride over with Mom to see Dale at Saint Mary's, Rochester as he was admitted yesterday for leg sores. Expecting him to stay at least until Monday. I also think that Tricia and Chad are coming down that day. Hopefully we'll get to see them. Clay is also coming this weekend, It will be nice to see him.
Thank you so much for all your support. You are all very special people and we will never forget all the kindness and love that you have given us.
Hugs to you all!!!
Sheila and Chad
Ty, Nick, and Zac
Wednesday, October 11, 2000 at 02:06 PM (CDT)
Tonight we will be going up to Wasie again as we have to be at Children's at 8:30 am tomorrow. He has to have another spinal tap and counts done. Plus have another IT MTX.
The administering of the Ara C went well over the weekend. We have to do that again this weekend.
Tyler had a surprise in the mail yesterday. He got an autographed picture of REGIS... He was so excited!! He couldn't believe that Regis signed his name to his picture for him. Way to go Mom you finally found something that he was excited about.
Will let you know what happens tomorrow.
Love,
Sheila and Chad and boys.
Friday, October 06, 2000 at 07:57 PM (CDT)
Hi...We're back...
Last night we got up to the Wasie about 7:30 pm. Chad, Nick and I were the only ones this time. Ty and Zac stayed at Grandma Karen's. Chad's sis Tricia and "Uncle Chad" came down to visit. It was so nice to see them. Then we had to be at Children's at 9am. Nick had a spinal tap ( Spinal fluid was clear of the little buggers) and then he had IT MTX, and he started new meds...again!!! Cytoxin (IV), 6tg (orally at home), and Ara-c. We have four more weeks until Maintenance, hopefully no delays.
Counts today:
WBC: 4.7
Hgb: 9.8
Plts: 307,000
ANC 1692
The Ara-c is done at home (IV push) 1 per day X 4 days. So they taught me how to administer that, the heparin (to keep his line from clotting) and saline to flush. It's kind of wierd having a sharps biohazard container sitting in my kitchen. The Ara-C and Cytoxan cause fever and nausea...but we have Zofran for anti-nausea med and it is wonderful.
Nick did very well today. He didn't get sick at all. He came out of anesthesia great. Not crabby at all. Just wanted to eat french fries with lots of ketchup. It was so funny cuz when Amy (his nurse for today) was hooking up his IV he grabbed it before her and started hooking it up himself...little smarty pants!!!
We left about 2:45 pm and all was well. Next week the plan is Wednesday night going to Wasie again and then we have to be a Children's at 8:30 am. He is due for yet another spinal tap and that's it that day. Except for starting Ara C again X 4 days.
That's about it...
#*#*Please don't forget to sign the guestbook, we love to see who is visiting#*#
Hugs & Peace... Love, Joy, and Faith...
Sheila and Chad...Ty, Nick and Zac
Thursday, October 05, 2000 at 11:08 AM (CDT)
Good Morning....
Yesterday we had Nick's counts done and this was the result...
WBC: 4.2
RBC: 3.53
Hgb: 10.1
Plts: 377,000
ANC: 1470
Sooooo....it's a GO for Friday. We are going to stay at the Wasie tonight because we have to be at Children's at 8 am.
Nick is feeling great! He doesn't even sit down for two minutes.
I'll let you know what happens...
That's it for now...
******* PLEASE DON'T FORGET TO SIGN THE GUESTBOOK WHILE YOU ARE HERE...WE LOVE TO SEE WHO IS VISITING....
Hugs, Prayers, and All things Good,
Sheila, Chad and boys
Thursday, September 28, 2000 at 04:53 PM (CDT)
Nick went in this morning to UHD for counts. We were hoping that they were high enough to start his next month. Unfortunately....NOT!
WBC: 3.7
Hgb: 10.5
Plt: 269,000
ANC: 370
The ANC is what kept us from starting. That needed to be above 1000 and the Plts above 100,000 (which those were OK).... He is feeling really well. He has a slight runny nose..which is clear, no fever. So he probably has some allergies going on just like his mama. He has been laughing and joking quite a bit. His hair is gone. I have to tell you a funny story about that. Yesterday when I was blow drying my hair he walked in and said "What doing mom?" I said..."I'm drying my hair, do you want me to do yours?" He looked at me like "Dah, lady...I don't have any" and laughed. What a card!
We've also been keeping up with the show Big Brother. Of course, this cancer mom's favorite houseguest is Eddie. (No bias there I'm sure) Even though, Eddie's mama should probably wash his mouth out with soap when he get's home, I believe he is very deserving of the grand prize. These children go through so much in their lifetime, that it's amazing how they just thrive....Eddie has one leg and you should see how that man can manuever around anything without crutches. What an inspiration to the kids that are going through tx now. Just my .02 and again, a very biased opinion. But I know who I'm voting for....GO EDDIE! (Of course, Tyler wants Josh to win ...and Dad, you know...Jamie all the way..of course)
I went to my first American Cancer Society meeting Wednesday night. Chad and I are going to be members. We are going to chair the Public and Media relations. This will be a good place to put some positive energy.
What else? I think that is probably it. Looking forward to a quiet weekend (well, I should say HOPING in this house)
Oh, yeah...I was watching the news on Tuesday night and they were showing Cris Carter talking with some oncology kids...Of course when the panned the waiting room...it was Nick's clinic at Children's...figures.
Well, that's it for this update...
Hugs, Peace, and all things good...
Sheila and Chad
Ty, Nick, and Zac
Thursday, September 21, 2000 at 09:00 PM (CDT)
Good Evening All...
Today Chad took Nick to get his counts done...this is what we found:
WBC: 2.3
RBC: 4.16
Hgb: 11.9
Plt: 364,000
ANC: 644
Now, he has been on decadron (steroid)for 7 days, and steriods up the blood counts. So this is not "actually" true numbers. But he is doing well, and we don't need to worry about transfusion. Now he will be off steroids as of tomorrow, so we look for his counts to drop off to what they "actually" are. Hopefully they won't drop too far so that we can't continue into the next month tx next friday. But, our Onc said a delay is normal. In fact, it might be kinda nice to have a couple weeks break.
Today Nick's hair was also falling out alot more. Grandpa Dale shaved it all off, it looks so much better. He cried when he looked in the mirror, though, when he saw he didn't have any hair. But now, Tyler thinks it's cool, so Nick does too!!!
Tyler started Karate on Tuesday...I don't know if this will be a good idea or bad idea. We'll soon find out! Tyler also is doing very well learning to read. I am so impressed on how well he catches on. Now Chad and I can't spell anymore, cuz he knows what we're talking about. I also want to Thank those who wrote to Tyler. He just loved it. He showed my a big envelope that a 2nd Grade Class from Wells sent him and said, "See, someone does care about me!"
We received Nick's song that "The Songs of Love Foundation" wrote for him...It is so cool..."Nick, Nick, Nick, Nick, Nick Schonrock. He's a singin' and dancin' kind of boy.." You can see more about the wonderful organization at www.songsoflove.org
Well time to go...until next time...
Love,
Sheila and Chad
Ty, Nick and Zac
Sunday, September 17, 2000 at 08:07 PM (CDT)
Hello..
I finally got here to update. Sorry it's taken so long.
Friday we went to Children's. Nick got his counts drawn, Vincristine (IV push), doxorubicin (IV), L-asp (IM-leg),and Zofran( for nausea). Hopefully this will be his last L-asp forever. But who knows, only time will tell.
Blood counts were good...where they needed to be....
WBC: 2.1
RBC: 3.32
HGB: 10.2
PLT: 227,000
ANC: 210
So....the mask has to be worn. Yuk! But this is where they are trying to zap the little buggers again, so the low counts is what we want.
Here is the plan for the next couple weeks.
On the 21st we need to get labs drawn at UHD just to make sure they are OK. Lee said that he may need a transfusion the end of next week....so we may have to go up to Minneapolis on Friday. It will depend on the counts. UHD cannot do pediatric transfusions unless emergent. Then if his counts are OK, the next Wed (which would be the 27th) counts need to be done again at UHD. IF his counts are back up...ANC above 1000 and Plts above 100,000 then we can proceed to the second month. If he has not recovered, then we will wait until they do. So this could be a delay for a few weeks. Again, we'll have to wait and see.
He started another spurt of decadron on Friay also. Twice a day for seven days. This will be a very trying time as the "meanies and munchies" are coming back. Good thing we have a little break after this spurt.
I also went to the Dr on Friday and got put on antibiotic, prednisone, and inhaler. Good thing my steroid isn't as high a dosage as Nick's otherwise we would definately have a problem.
Nick's hair is now definately starting to fall out. If you run your hands through it, it is like he is shedding. Our Onc said that within the next week it should all come out. The next time you see him, he may look like Jesse Ventura.
I think that is it for now. We'll let you know of any changes....
Take Care,
Love,
Sheila and Chad...Ty, Nick, and Zac
Thursday, September 14, 2000 at 08:34 PM (CDT)
Hi..
Well, we go tomorrow to Children's for Nick's weekly clinic appt. This last couple days have been quite challenging...his attitude has been up, down, up, down... Last night he was screaming, yelling, saying "Ooooweee" "Oooooweee". Throwing things, and not wanting to take any tylenol for the pain. With the meds he's on he gets headaches, and leg pains. Finally, after many hours, he settled down and fell asleep in my arms, whimpering, while I was checking email. I was so close to getting his counts checked last night at midnight. But I thought I'd see how he was today.
WELL.....he woke up crabby. Which I do all the time. But by the time the tylenol started working he was eating and running around with his brother. Totally different kid. You know what I think???? It is the "terrible twos" hitting us now too. That's what is going to be the hardest thing. Is it the chemo? OR would he have been this way without it? We now have to accept a "NEW NORMAL"...which is having a cancer kid. Life is now and will always be, different. Blood counts, leg pains, what if's, spinals, will it come back?, the list can go on and on and on...but within the midst of all the pain will be a closeness and an appreciation for many things that many people take for granted. Yes, it takes alot of patience (which I didn't think I had), organization (the meds are unbelievable!), and the belief that it all will be OK! And some days we are so tired that we can't see straight. But from somewhere the strength comes. You know, some have asked.."How do you do it?".... "How can you deal with it?"...."I don't think I could deal with it!" But you would, You just have to. You DON'T have a choice.
I found a quote on a card...and this is a good place for it....
"The world is a wonderful place and everyone should shut up and enjoy it every once in a while."...Sarah, Age 12
Take Care and we'll get you updated this weekend on our Friday visit.
Hugs to All....
Sheila, Chad..Ty, Nick and Zac
***Don't forget to wear your Gold Ribbon Pins!!! It's Childhood Cancer Awareness month!!!!
Friday, September 08, 2000 at 11:04 PM (CDT)
Greetings..
Well, today was quite a long day. It was our weekly trip to Children's. We didn't have to be there until 11:30 am, which was nice. Nick just had to go to the clinic today. We left BE about 8:30 and we got a visitor to ride with this time, Grandma Gertrude. She was hitching a ride to Ellen's to spend some time with her and then they are traveling to my dad's in Wisconsin on Sunday. It was a nice ride up. After we dropped grandma off, we got to start our jaunt to Minneapolis. We got to see the nurse that was with us most of the time while we were inpatient on initial diagnosis. Her name is Amy, and she is a very special person to us. She made those days alot easier. She caught me off guard while we were at the clinic. We didn't know she was working down there, usually she works only on the inpt ward. I came around the corner and almost ran right into her. She opened her arms up and said "Sheila" I cried, emotion just overwhelmed me. She was just so wonderful to us. Nick also met a friend there, his name was Toby. Toby is a golden retriever. He had a Vikings jersey and hat on and did tricks. Nick thought that was so cool. Then we got his port accessed and he had vincristine,doxorubicin and zofran through his port. He also had L-asparginase given IM in his leg. He handled it all like a trooper. No nausea or vomiting or reactions. He had his counts done, which were:
WBC: 6.9
RBC: 3.35
HGB: a whoopin' 10.5
Plts: 295,000
ANC: 1,932...yeah!!!!
So all is good there.
We will have to go to UHD next Monday and Wednesday for the L-asp IM to leg and then back up to Children's on Friday for the same as was done today.
He is off his "meanie and munchie" pill (that a chemo-mom friend of mine calls it...the decadron (steroid)) We are 7 days now free of orals at home except for the 2 days he takes of Bactrim (prophylactic antibiotic for pneumonia). This is cool....But after those 7 days we have to start the 2nd spurt of it. Fun, Fun, Fun.
Thats about it for now...
Just a reminder that September is Childhood Cancer Awareness month...if you have a gold ribbon, please wear it in support. If you want more info on the gold ribbons...go to www.goldribbons.org and www.childhoodcancermonth.org...
I am so tired right now, I hope this all makes some sense. Love to you all...
Hugs...
Sheila and Chad...Ty, Nick and Zac
Friday, September 01, 2000 at 10:56 PM (CDT)
Hiddy Ho....
First of all September is Childhood Cancer Awareness Month. Check out the website...www.childhoodcancermonth.org
Well, Thursday went better than I expected it to, considering all the hoopla around here Wednesday night. Chad, Nick and I were planning on leaving Wednesday night to stay at the Wasie. But Sue (our daycare mom) called and said that Zac was running a fever...golly gracious!!! So we decided to wait until Thursday morning to leave to see what was up with Zac. Well, that night Tyler broke out with a rash...Oh, yeah, I forgot to tell you that we had a mono exposure too...anyway, the rash was quite suspicious for Fifth's disease. I thought wait until morning and see whats up. We had to leave BE at 5 am as we had to be up to Minneapolis by 8 am. Grandma Karen came down to watch the boys and take them to daycare in the morning. But as it turned out neither one went to daycare. Tyler's rash was worse. So, they were hauled off to the clinic and dx with Fifth's. Yippee!!! At least that's not a big thing. If it would have been chicken pox I would have been a little crazy.
Anyway, Nick had to have a spinal tap and Intrathecal methotrexate put in his spinal fluid (again, that is a prophylactic to keep the little buggers out of his CNS (central nervous system)) He did so well. This was the best he has been coming out of anesthesia. No fits, throwing things, screaming, etc. He just started playing and eating. His aunt Tricia came down to help us pass the time.
Nick also had to have vincristine (IV push in his port) and doxorubicin (IV over 1 hour) and he also starts a 7 day cycle of decadron (the dreaded stuff...steroid) Now we start going every Friday for four weeks. He also will start his L-asparaginase shots IM in the leg 3 times a week for the next two weeks...and those can be done at the hospital in town here. OK? Is that it? Oh, also Zantac and Zofran on a prn basis for his tummy upset. Nick will also lose all his hair in probably about two weeks. So don't be surprised if the next time you see him he looks like Jesse Ventura (especially being on the decadron...it will pump up the volume)
His counts were:
WBC: 3.0
RBC: 3.24
HGB: 10.2
Plt: 317,000
ANC: 810
Liver profile came back normal.
Tyler started first grade today. He said it went good, and that was all he told me. He is feeling a little left out lately as Nick has been getting a lot of attention. If at all possible...could someone send him some mail at
Tyler S.
Po Box 192
Blue Earth MN 56013
He is having a hard time, and he has even said "I wish I had cancer" I remind him what Nick has to go through and how serious it is. I also try to remind him of all the things he gets to do because he is Tyler and because he is older. But he is only 6 and I can't expect him to understand to the point I need him to.
I think that is it. We are hoping to make it to the parade in Frost on Sunday. Just what we need around here...more candy. The kids are hyper enough as it is.
We'll keep in touch,
Please continue to keep Nick in your prayers.
Love,
Sheila, Chad and boys
****Remember, don't place a period where God has put a comma...
Sunday, August 27, 2000 at 04:34 PM (CDT)
Hey....Guess What???
NEW PICTURES!!!
Were all doing well here. Saturday we took Nick and Tyler to Sesame Street Live at the Mankato Civic Center. It was a lot of fun. I think Tyler thought he was a little old for the event...but MOM and DAD had a ball. I must have taked 30 pictures!! We sat in the 4th row. Zac stayed at the Iron's household and got completely spoiled. Although he would only let Mari hold him..he's already going for the older women!! (Like father, like son)
This coming week is going to be crazy! We have meetings on Tuesday, We have school meetings on Wed, and we also have to decide if we are going to the cities that night, or waiting until Thur morning early. Nick has to be at Children's for a spinal tap and counts. Hopefully we will be able to start his next phase. Although, we are dreading it as it is supposed to be a tough one. Please continue to remember Nick in your prayers.
Nick has been having so much fun being on Make A Child Smile this month. Him and his brothers have gotten so many neat things from all over the world. I finally finished all the thank you's for that. I just have to send then out. We are meeting some wonderful people, from Australia, UK, Canada and all over the States. If you want to do something to make a difference in a childs life...this is the site. Please visit...www.makeachildsmile.org....it only takes a minute and a stamp to send a hug to one of the kids.
We'll keep you updated...
Peace and Love,
Sheila, Chad and boys
Tuesday, August 15, 2000 at 11:13 AM (CDT)
Wow! This weekend is finally over. My class reunion went well...and everyone lived through it... The Relay for Life was wonderful. There were over 6,000 luminaries lining the walk ways. On Saturday we went to the tumble-a-thon that the Blue Earth gymnastics club put on in honor of Nick...I couldn't believe how talented those kids are. And they tumbled for 1.5 hours straight!!!
Nick had his counts done on Friday and they were great!!
WBC: 8.3
RBC: 3.44
HGB: 10.4
Platelets: 373,000
ANC: 3,901
They had cut the chemo meds in half which led to the normalized counts and also the decadron tends to up the counts also, and he had just gotten off of one of his monthly 5 day pulses.
Lee called this morning and said to go back to his full dose of 6mp and oral methotrexate. We are due for a spinal tap on Aug 31st...that will lead us into our dreaded...Delayed intensification.
Until then...
Love,
Sheila, Chad and boys
Just a reminder ....Nick is on
www.makeachildsmile.org for the month of August...he has gotten so many cards and kind words....
Wednesday, August 09, 2000 at 05:44 PM (CDT)
Hi All...
Sorry I'm a couple days late updating, but it has been a busy couple weeks. We have a class reunion on the 12th and I'm on the committee of about 4 now, so we are rushing around trying to get it all done.
We went up on Friday the 4th. We didn't have to be to Childrens until 1:30 which was nice. We saw Dr. Clark Smith this time as Dr. Heisel (our primary onc) was on vacation, a well-deserved one I'm sure. Dr. Smith was our admitting Dr back in May when Nick was diagnosed. He is a very smart and caring man.
Nick got his blood drawn (through his port) and then had his Vincristine (chemo med)also per the port. He did so well. He stood on the scale all by himself and stood by the wall to have his height taken...he has always fought these things before.
Nicks counts were:
WBC: 2.5 (which is low)
HGB: 9.7 low but still good for Nick
Platelets: 206,000 normal
ANC: 775
We were off tx for a week the third week in July. Then they put Nick back on regular schedule the last week in July. This amount of chemo was too high so now they cut it in half. They want to keep his counts in a normal range during this phase.
Friday night we have the cancer walk in Blue Earth, which Nick and Dad will walk and lead the survivor lap. Then on Saturday I have our class reunion at night and the Blue Earth Gymnastics Club has Nick as an honoree for their tumble off. So we will be there in the afternoon. Sometimes I don't know if I am coming or going. Busy, busy, busy.
One of the gals that is in my online support group was talking about this plaque that she has hanging on her bedroom wall...it says....God, Give me Guts!!! That just about sums it up!!
Don't forget Nick is the Featured Kid this month on www.makeachildsmile.org. He has already gotten so many wonderful things from so many wonderful people from all over the US and Canada.
Take Care...
Sheila, Chad and boys
Friday, July 28, 2000 at 05:19 PM (CDT)
Happy Friday, everyone!!!
Nick got his blood counts done today. He did rebound very well.
WBC: 3.2 up from 1.9 still low, but good
HGB: 10.3 up from 7.6 wow!!!
Platelets: 510,000 normal
ANC: 906 up from 171
We are back on his chemo schedule now. I can sure tell that his HGB went up quite a bit as he is looking better today!
Today we got the names and addresses of the marathon runners that will be running in Nick's honor for the Team in Training program. It will be a 26.2 mile marathon that will take place this fall. The marathon will take place this year in Cozumel, Mexico. The $ raised will be donated to The Leukemia & Lymphoma Society. It will be wonderful to correspond with them and have them get to know Nick.
Also, the Gymnastics Club here in Blue Earth has asked Nick to be the recipient of sponsorship for their tumble off this year. What an honor for the little guy. That will take place Aug 12th in the afternoon.
ALSO.....Just to let everyone know that KAREN BLEESS is turning 50......on July 31st!! Wish her Happy Birthday and give her a hard time...
Oh yeah, Nick will also be "The Featured Kid" on the web site:
www.makeachildsmile.org
for the month of August...please check it out..it is a wonderful site!!!
I think that is about it. We have a scheduled appointment at Children's on Aug 4th for his check up and other chemo administration.
Until then...
Peace,
Sheila, Chad and boys
Saturday, July 22, 2000 at 04:09 PM (CDT)
Hi Everyone...
Well, we hit our 2nd bump in the road. We had Nick's blood counts done on friday and they were low. WBC at 1.9....HGB at 7.6....ANC at 171!!!!! AUGHhhhhhh!! His platelets were good at 400+ so bleeding is not the problem...but infection is. Since his ANC is under 200 he needs to wear a mask in public place and we need be extremely careful on the handwashing, etc. He's feeling pretty good, even with low counts. Just a little tired and irritable. And also since his hemoglobin is low his muscles are a little weak as they are not getting the oxygen they need. So he is having trouble again getting up stairs, etc. His nurse, Lee, said that kids get used to the low counts and that is why Nick seems OK.
So, here we sit. They decided to pull him off chemo for a week...for his counts to rebound. Then we need to check his blood again next friday to see if he can go back on.
We'll keep you updated.
Blessings & Light...
Sheila, Chad and Boys
Sunday, July 16, 2000 at 06:41 PM (CDT)
Hello!
Everything is going well. No problems have come up and Nick has stayed healthy, along with everyone else in this family. (KNOCK,KNOCK) We need to have a blood draw at UHD in BE on 7-21 and then up to Children's on 8-4-00. The only updates that we have are FUN things!!!
Ty, Nick and I rode in the Blue Earth Giant Days parade on 7-8-00. That was fun. Nick enjoyed throwing candy and waving at the people. What a Ham. Tyler was whipping candy into the crowd at first like he was a baseball pitcher. With a little correction from Mom he did wonderful after that.
I got to work last Monday ( for a little while) and then on Wednesday and Friday. It was nice to get out. It was also nice to see Nick playing normally with the kids at daycare. He had a lot of fun. He went to bed very early those nights...pooped out. Poor little duffer.
Chad went to a bachelor party on Saturday. Golfing started at 10 am and then they went to Mankato...wonder what they did up there????? He came tripping in at 2:30 am Sunday morning...I take it he had fun!
Today we went to the Mohr family reunion in Wells at Eldo and Joann's. It was a nice day, but pretty hot. The boys had fun running around their nice backyard. We had picked up Grandma Gertrude before to take her with us. It's always nice to see her.
Next week Kay and Chris will be here from Colorado. (My aunt and cousin) That will be great...never a dull moment with that crowd.
Also I just want to say that the Faribault Co. cancer walk is on August 11th at the fairgrounds in Blue Earth. It is a wonderful event. The clinic I work for is decorating our camp site in Scooby Doo stuff for Nick as they are using him as an inspiration this year. We also are going to be leading the survivor lap at the beginning of the festivities.
If anyone is interested in buying luminaries in memory of/honor of a family member or friend who has battled this nasty beast let me know. They are $5 a piece and then the bag will be lit with their name on it for the walkers to walk through. It is the most beautiful thing I have ever seen. The opening ceremonies start at 7:00pm I think and then the lighthing of the luminaries will be at 9 pm. Come out if you can...It is very touching.
Blessings & Light,
Sheila, Chad and Boys....
Sat Jul 8 14:08:53 CST 2000
Hi All...
Well our day was pretty uneventful on Friday. We didn't have to be to Children's until 2 pm. We needed to do alot of stopping on the way up so we left at about 9 am. Zac and Ty stayed at Sue's (their other mom (daycare)). We took 169 up as we needed to stop in Mankato. It was a nice ride up. Nick is quite talkative in the car. Every two seconds he says "MOM, MOM" and I just can't respond I have to LOOK at him everytime. I really need to see Tina soon for a massage. We ate dinner at TGI Friday's.
When we arrived at Children's Nick had just woke up from a nap and he was crabby. He kind of fought getting his port accessed. But after it was done he was fine. He even hugged his nurse, Lee, before we left and sat on her lap. He is starting to gain trust with her. That was a very good sign.
Nicks counts are:
WBC: 3.0 (white blood cell)
HGB: 8.9 (hemoglobin)
PLT: 278,000 (platelets)
ANC: 1140 (absolute neutrophil count)
So we are OK without a mask as ANC was above 200. WBC and HGB are low because of the 6mp (chemo drug,oral) he is taking once a day. PLTs are awesome...this is the clotting ability. So, where does this put us?
In interim Maintainence...the next phase of treatment. His body gets a well-deserved break now. 56 days worth. We need to get one blood draw at UHD in two weeks and we don't have to be to Children's for a month! Let's keep everything crossed that thats the case. Keep him healthy.
He added a Decadron (oral) spurt of 5 days (steroid) at the beginning of each month. Oral Methotrexate (5 pills at a time) once a week. Continue Bactrim (prophylactic antibiotic for pneumonia) X2 a week. His 6mp is continued...1 full pill M-F and then on Sat/Sun 1/2 pill. We can add Zantac during his decadron spurts if he acts like his tummy is getting irritated. Then the last thing is his Vincristine IV push once a month that is done through his port at Children's. That's it...lets just hope no one around here gets an ear infection, I don't know if I can handle another med dispense for someone else.
Today is Giant Days in Blue Earth. Ty and Nick are going to ride in the parade with me for UCFC. That should be fun. We went to the fireworks last night. They were the best I've seen!!! Nick was scared at first. We had the radio on the music for this, but it was too loud. Nick loosened up after we turned that down and then he had a ball....He was just sitting looking then he said "beautiful" It was so cute.
For everything being so uneventful I sure had a lot to tell.
Blessings and Light...
Sheila, Chad and boys
Quote for the day:
"Friends are angels who lift us to our feet when our wings have trouble remembering how to fly..."
Tue Jul 4 22:58:56 CST 2000
Hello Everyone...
We just need to tell you our exciting news...
Nicholas can swallow his pills now, instead of crushing them up and mixing in chocolate syrup. We couldn't believe it. At 2 1/2 this kid is swallowing pills...what a remarkable thing for him to learn this early. I said "Nick, come here and let's try this" I told him to open his mouth and stick his tongue out, then I put the pill on the back of his tongue...and then told him to drink some water. You should have seen the look on his face when he found out the pill wasn't there anymore. He was so excited he doesn't have to take the "Yuk" medicine with the syrup...because no matter how we tried you could never cover up the taste.
All we can say is WAY TO GO NICK!!! You amaze us once again.
Blessings and Light...
Sheila and The Boys (that's including Dad, too.)
****I found a quote on my online support group, and it is wonderful...
"Excellence is the result of caring more than others think is wise, risking more than others think is safe, dreaming more than others think is practical, and expecting more than others think is possible."
Friday, June 30, 2000 at 04:11 PM (CDT)
Hello Everyone...
We just got home from our trip to Children's. It went real well this time. Nick came out of anesthesia less crabby and actually laughing.(Maybe they gave him alittle too much propofol:) He's still a little goofy. Maybe now that his body is in whack, this is the way he is really supposed to be...oh geez!!!!
His counts look better today. His ANC went back up to over 1000. His WBC are still at 3.4 but holding. His platelets are way up over normal...???'d that and they said that is a normal reaction. His hemoglobin went down a little, but he's still far from a transfusion of packed reds. Now we are heading into whats called INTERIM MAINTAINENCE...This is where his body gets a well-deserved break. For the next 62 days we will only need to be up to the CLINIC on 7-7-00 and then again 8-4-00 with NO PROCEDURES. Yippee!!! Yahooooo! (This plan is only if things go well during this time.) He needs to take 4 meds on an alternating schedule at home yet, and on the days he goes to the clinic he will get chemo there too...but IV push. It should be a nice summer. Dr. Heisel said that daycare should be OK now. So we are going to try Wednesdays for sure and see how it goes.
We have another request...It is Dale's 50th Birthday on Sunday July 2nd...Will you please email him and wish him a Happy Birthday...you only turn 50 once!
bleessdk@bevcomm.net...Thanks
Blessings & Prayers...
Sheila, Chad, Ty, Nick, and Zac
Thursday, June 29, 2000 at 03:22 PM (CDT)
Today we are on our way up to Children's for the postponed spinal tap. Nick's cough is alot better, and he hasn't run a temp since Monday afternoon. So....I think we should be OK tomorrow. Tyler is so excited as he is staying with his friend Jake overnight tonight. Those two really can be a handful. Good Luck Jess.
We also want to wish "Daddy Dale" a Happy 50th...yes....50th Birthday on the 2nd of July. Please if you see him, give him a hard time. Thanks..
We'll let you know what happens tomorrow. Have a good weekend everyone.
Blessings & Light,
Sheila, Chad, and boys
Tuesday, June 27, 2000 at 08:44 PM (CDT)
Hiddy Ho Neighbor...
Well, we hit our first bump in the road. Nick was running a fever on Sunday and Monday. We went to stay up at Kelsey Corner on Monday night. We had to be to Children's at 7:45 am for Nick's spinal tap. BUT....when we got there I told them of his cough and temp. A chest xray was ordered and sure enough...it looked "suspicious". PROCEDURE POSTPONED... So we are either looking at early bronchitis or just the "crud". Even though he wasn't running a temp at all today, they gave him a shot of Rocephin and put him on yet another antibiotic orally. They just want to make sure that they cover all areas.
His blood counts are going back down. Which, again, this was expected from the 6MP (chemo drug) that he is on orally now. This drug destroys blood cells at a certain stage of maturity. Unfortunately it kills good cells too. That's why his counts are low. His ANC (Absolute neutrophil count-immunity) is low at 800+. He will need a mask when he gets to 200. Hopefully we won't get down that far.
We are going to have to miss the cruise tomorrow as Nick just isn't up to going. It was a disappointment, but there will be others.
We have to be back to Children's friday morning. So we are going back up to Kelsey Corner on Thursday night. This time I think Tyler is going to stay home as he is getting a little anxious now that the newness of the whole thing has worn off.
Well, We will keep you posted with another episode.
Just want to let you know of a neat web site I found. Nick will be featured on here in September.
www.makeachildsmile.org
Love,
Sheila, Chad and boys
Sunday, June 25, 2000 at 06:25 PM (CDT)
Thank you to all who took part in the Benefit today. It turned out great! It was so nice to see all of you. A special thank you to "Friends of the Schonrocks" and all the volunteer workers...it was quite a hot day and was quite uncomfortable I'm sure. Although, it was nice to see those guys from Bevcomm sweatin' in the KITCHEN. (Ha, just kidding) Thanks guys!
Jess...you better let Calgon take YOU away tonight!!
Nick had a little fever today so we had to go home sooner than expected. Tonight he is still running a 101 degree temp, so we'll have to watch him over the next day to make sure he doesn't spike higher. Their definition of a fever is 101.5 or higher. If he does then we have to call the Dr on call up at Children's. They are so wonderful and call back within 20 minutes when they are paged. If we don't hear from them in 20 minutes we are to page again, no matter what time of the day.
We are still planning on staying at Kelsey's Korner (a special place designated at the Wasie for oncology families) monday night. Then Nick has a spinal tap, chemo in his spinal fluid, and then I'm sure that they will check his lungs as he has been coughing the last few days.
Wednesday we have a fun day planned. Children's is taking the oncology kids and their families on a cruise down the St Croix. It's a two hour cruise with lunch. Tyler and Nicholas are going. Zac is staying with his WONDERFUL daycare family for the day..thanks Dean and Sue for being so great through this whole ordeal.
Well... better retire for the day, it has been quite a busy day. Again, THANK YOU ALL>.... We love you!
Sheila, Chad, Ty, Nick, and Zac
PS...we had some asking about the gold ribbon pins that we were wearing. Check out the website..
www.goldribbonpins.org
Tuesday, June 20, 2000 at 08:02 PM (CDT)
Oh, Happy Day....
Well, we didn't get up to "the Wasie" until 9pm again Monday night. Our intentions were good to get there earlier, but with 3 kids...it never works to be on time.
Nick's visit went well. We needed to be there at 8am. He had to have the spinal tap and an introduction of methotrexate (another of the many chemo drugs) into his spinal fluid. He was running a temp of 100 degrees, but they didn't seem to worried about it....ears looked fine, throat OK...labs were great..SOOooooo it was a fluke, they say. They gave him a shot of Rocephin just to be on the safe side...knock out anything that might be lurking as far as an infection goes. His hemoglobin(part of the blood that carries oxygen to all parts of the body) was a little low today at 9.5 (normal is 11.5-13.5), so he was a little pale and a little more tired than normal....but still full of pea and vinegar. His ANC (absolute neutrophil count---the body's ability to fight off infection) was 2,592(normal is over 1,260).....SO YEAH...we are still OK with NO MASK>>>>>>White blood cell count was just a little low at 5,400 (normal is >5,500), but that was to be expected as he started 6-MP (another chemo drug) and one of the side effects expected was low counts.
Dr. Margaret Heisel, his PED-ONC Doctor, said that he is doing VERY well. She is such a wonderful and caring person. Makes me almost feel like we're back home at United Clinics of Faribault County...(Do you like that little plug fellow UCFC'ers)
Nick is even warming up to her a little bit.
We will be going up again on June 27th for just about the same routine. Then the week of July 4th we will be switching to Friday's. For how long??? I have no idea. We just play it by ear. We're getting pretty good at that.
Thanks everyone for signing the guestbook...it makes us smile :)
"Sometimes you get shown the light in the strangest of places if you look at it right"
KEEPIN' THE FAITH*****
Sheila, Chad and Boys
Monday, June 19, 2000 at 08:54 AM (CDT)
Hello, Hello, Hello....
It's a wonderful day in the neighborhood....
Nick's effects from his "BAD MEDICINE (Decadron-steroid)" are finally hiding themselves. He is starting to look like my Nicholas, the 2 yr old, instead of Nicholas the front lineman for the Vikings. He is alot happier now too. He will sit on the couch, wiggle his eyebrows and wink. What a stinker.
Well, tonight we are going for our family night to the "Wassie" again at Abbott. I hope we'll get going a little sooner this time. Grandma Susie is going to watch Zac...boy has she got guts!!!! Nick will have a spinal tap done on Tuesday and some chemo put back in his spinal fluid. Again, this is just to make sure the leukemia cells (blasts, little buggers)---we call them many things in this house---stay out of the central nervous system (CNS)...We don't want them there...stay away! Then we are planning on stopping this time at Cabella's in Owatonna to see the stuffed animals and the fish. The boys will love this.
I'll let you know what happens tomorrow. Hopefully it will be uneventful, so I won't have to write much....
Again>>>>Thank's for everything. Hopefully we'll be able to see some of you at the benefit on June 25th....10am to 1pm at the Ag Center in Blue Earth.
Believe**********
Love,
Sheila, Chad and boys
PS...don't forget to sign the guestbook,THANKS
Tuesday, June 13, 2000 at 08:59 PM (CDT)
Hi Everyone!!!
Today we enjoyed one of our weekly visits to Children's-Minneapolis Short Stay Unit. Nick had to be up there for a spinal tap( to make sure there are no leukemia cells hiding out in his spinal fluid and deciding to multiply) and to put some chemo in his spinal fluid to make sure that the little buggers stay out of there.
We decided to go up last night and stay over, instead of having to get up at 4am and drive through rush hour to get there. It was a wonderful idea. We left after Chad got done with work and were up there about 9pm. Tyler, Nick's older brother, went with this time. Zac, the younger one, stayed with Chad's mom and stepdad, "Grandma Susie" and "Papa Lafe" Really her name is Joyce, but she has a cat named Susie. So, that is what we call her.
It could be worse. It could be "PIG GRANDMA AND GRANDPA"....that's what my brother Clay and I called my grandma and grandpa Mohr...I'm sorry Grandma! You should have had the horses still after we were born. Then you could have been "HORSEY GRANDMA AND GRANDPA".
ANYWAY, we had a good time Monday night. The boys were so good. As soon as we walked into "The Wassie" (the "hotel" at Abbott-Northwestern) though, Nick started to cry. I think he thought we were going to a hospital room, because of the elevators. He is so gun shy now. But as soon as we got to the room he relaxed.
We drank pop and ate cookies that Aunt Julie had given us. MMMMM good!!
Nicks blood counts are good. YAHOOOOOOOOOOOO! YEAH!!!!!! ALRIGHT!!!!!! Couldn't be any happier with those results! Thanks for all your prayers. His ANC (which is his absolute neutrophil count-his body's ability to fight infection) is at 7,000+. Normal is 1,000 to 8,600...AWESOME. So he can go wherever he wants to without a mask on.
On our way home on Tuesday afternoon, we stopped at Heritage Halls Museum in Owatonna. That was worth the stop. The boys had a good time...Especially the biggest one...DADDY!!! You know...planes, trains, and automobiles....the only thing that was missing was power tools and a remote....
So, now, we are home...Ahhhhh....Calgon? The boys are chompin' on popcorn (one of Nick's favorites now, only 2nd to CHIPS and DIP) I still can't talk them into going to bed on time these days. There's always 50 drinks of water, back scratching, bathroom breaks, and "tummy aches". How funny, Chad and I just smile. I think cuz we remember doing the same thing.
Stay tuned..for the next episode....
Keeping the Faith,
Sheila and Chad..Ty, Nick, and Zac
Just a reminder to please sign the guestbook when you are here. We love to read all the messages....
Friday, June 09, 2000 at 02:38 PM (CDT)
Hello from the Crazy Farm!!!
I can sure tell Nick is feeling better. Cuz now mom's going crazy!!! I never thought I'd say, "Oh, it's so nice to see the boys fight, scream, run around, throw things, eat furniture, destroy my house like a F5 tornado, overflow my toilet, etc., etc, etc." Thank the Lord for GRANDMAs and GRANDPAs that's all I can say. Nick and Tyler, and their friend Devon are going to see the movie "Dinosaurs" this afternoon with their grandma. Nick was so excited he even took a bath. He used to love baths until all this started and now I have to set him in there while he is in a state of panic. So for him to make the bathtub without much problem was wonderful...Now, since everything is quiet I think Moms going to relax....CALGON, TAKE ME AWAY!!!!
Thursday, June 08, 2000 at 01:13 AM (CDT)
Hi All...
I just wanted to let you know that today was a good day. We have started tapering the steroid (decadron) off. I don't know if it is because of that that he was in a better mood, or what. He was laughing more and playing with toys more. He was even down tickling Zac, and Zac was laughing hysterically!!! He got his hair cut today, YES CUT!!! Its still there. I have noticed today, though, some eyelashes coming out. But, not very many.
I just want all of you to know how much we deeply appreciate all that you have been doing for our family. All the prayers that are being said are doing amazing things!
Please make sure to read the past journal entries and sign the guestbook.
Keeping the Faith...
Chad, Sheila, Ty, Nick, and Zac
Tuesday, June 06, 2000 at 08:32 PM (CDT)
Hi Again...
We started our 2nd phase of treatment today. We had to be up to the cities by 8:00 am, so our day started out very early!! 4:30 am to be exact. The next four weeks will be that way. Every Tuesday we will need to be up there for spinal taps. They need to make sure that no leukemia cells (blasts) are hiding out in there. Today he also had a bone marrow biopsy which came back at .2% leukemia cells. Which is wonderful compared to 96% when we were diagnosed. The doctor said that we are now in remission. We just need to keep it there. All his blood counts are good for now.
Nick's doing quite well, other than being very irritable. Today we get to start tapering off the steriod which will make things alot less stressful around here.
I think I got the pictures figured out!!!
Keeping the Faith...
Sheila
Tuesday, June 06, 2000 at 07:51 PM (CDT)
Hi Everyone!
This is the first entry in Nick's website journal. Please check back for updates on his progress and hopefully cute pictures, too. (If I can figure it out.)
Click here to go back to the main page.
----End of History----