History

Journal History

Friday, December 21, 2007 11:10 PM CST

Amanda continues to do just fine. We recently changed pediatricians when being one cattle in the herd became unbelieveably ridiculous. We changed to a single Doc and hopefully that will make it easier with routines things. Basically the pediatric group, whos only job was to reimmunize Amanda, couldn't keep anything straight.

With Christmas approaching I think back to tryng to get back home from Duke 2 years ago. How hectic everything was. How frightened we were to leave the comfort of the doctors and hospital in North Carolina. How coming back home was sweet. We are so very lucky today. Lucky Amanda is truly doing great, enjoying school, life, family and living.

I hope everyone truly appreciates the health they have. It is truly something you cannot buy. OK some hospitals think you can, but really it is a gift.

Merry Christmas, Happy 2008

Laurie
Amanda's Mom:)

Monday, October 22, 2007 6:58 PM CDT

Wow, it has been a while - sorry for the lack of an update. All is very well in my neck of the woods. Amanda is doing great. We visited Dr. Martin this summer and all her tests were good. She is enjoying school and we are all very busy. There isn't much else to report, just the mundane.

Thanks for checking in on us.

Laurie

Tuesday, March 6, 2007 9:43 PM CST

Sometimes it is so discouraging to read other patients web pages. I feel for so many of the parents who are in a desperate fight to save their children. Sadly, I recently learned of another local patient who lost his very lengthy battle. It slaps me in the face everytime I hear of this. We are unbelieveably lucky to have a child who has done remarkably well. I think back at everything over the past 6 years and we have been fortunate. Amanda continues to do great. We have not had any bumps in the road lately. I don't know why some children do very well while other struggle day in and out. It doesn't make any sense.

Amanda was asked to speak at a fundraiser for the American Cancer Society and ROCK (Camp Boggy Creek). She wrote a very touching speach and I was amazed at her courage to speak in front of so many strangers. I know she is so very old for her young age.

By the way my girl is going to be 12 this weekend - GOD I'M OLD!!!!!

Sunday, February 18, 2007 10:28 AM CST

Finally a new homepage picture! This is Amanda with one of the puppies. We have 3 left and the girls have a ball playing with them. They thought bathing them all at once in the tub would be a good idea. You can imagine the mess, but once they were done they looked and smelled fresh as a daisy. This little girl - called speckles - is wearing the latest fashion wear - Build a Bear in pink jumper.

As you can see Amanda is going great - no complaints. We will be traveling back to Duke in June for her 2 year post transplant check up. I am sure everything will turn out great.

Thanks for checking in on us.

Laurie

Thursday, January 25, 2007 9:27 PM CST

WOW! has it ever been a while since my last update. Amanda is just fine and we are all very busy with our normal lives. She continues to do very well in school. She is again on the principal's honor roll. I contacted Duke about moving her 2 year appointment up to June since we are going to be in that "neck of the woods" then. Hopefully it will be okay and we can go then. Amanda has had 2 sets of immunizations 4/5 shots each time without any side effects.

We have 7 new members of the family (for now). Right before Christmas our lab had puppies. They are the cutest things - pitch black like mom. Hopefully we can move them along to new families soon because we are all falling in love:)

Thanks for checking in on us.

Saturday, December 9, 2006 8:48 PM CST

Thursday, November 23, 2006 11:37 AM CST

HAPPY THANKGIVING

Last year we were in North Carolina enjoying Thanksgiving with good friends. Amanda was beginning to eat again and we were itching to go home. BOY OH BOY a lot has changed. This year we are home and Amanda is eating and cooking again. She made the pies yesterday and she is anxiuos to eat all the fixin's.

We have a relative from England in town and a great organization, Connor Moran, arranged tickets to a hockey game for 6 of us last night. Amanda had a blast and her cousin was amazed by the game.

Ed is working so we are off to Grandma's for Thanksgiving.

Enjoy your day.

Thanks for Checking in on us.

Laurie

Thursday, November 2, 2006 5:51 PM CST

We received Amanda's 1 year report on Saturday. As expeected everything is great. Amanda is showing 98% donor cells. Again, I would be happier with 100%, but I will have to accept that there are 2% of Amanda's cells that are as stubborn as she is. Amanda will begin being immunized again soon. She isn't looking forward to the prospect of receiving all her shots again. I mean ALL eveen infant shots.

Amanda came home with her first middle school report card: All A's with a 4.0 GPA. YEAH!!!!! She is very bright. She is talking about trying to get into a math and science high school so she is going to talk to her guidance counselor about taking on some advanced math classes. She is already taking advanced language arts. She is academically driven; one less thing for me to worry about.

Amanda was thrilled a few weeks back to have the opportunity to meet Cheryl Crow. A local group got some tickets and she went with her Aunt. They had a great time and now Amanda is really a FAN.....

Thanks for checking in on us.

Tuesday, October 3, 2006 6:37 PM CDT

We arrive back at home around 6:30 tonight. What an exhausting day! Yesterday started out great with Amanda being 1 hour ahead of her appointments. Those of you that have gone through this know that being ahead doesn’t last very long. Before we knew it we started running 1, then 2 hours behind. We finally finished at 6:00 p.m. It was a 10 hour day for Amanda with constant testing. She’s beat and so are we. So far the result we have received back are all good. She does have to start drinking more water at school so the Dr. gave a note. Amanda’s organs don’t work as well as the normal child so her kidneys need good hydration. Hopefully this will be okay with the school and I won’t have to take a day off work to argue her case and her RX. Even though I work for the same school system I can tell you they are not the least bit empathetic to any one child’s problems, the system is tooooo big. Oh well, you have to advocate for your children.

We should get back some important results in about a week. Then Amanda will start her immunizations from scratch. Basically, all the shots she has gotten since birth will be redone in the same order. That means it will take over 2 years to get her up-to-date on all her shots. YUCK.

Thanks for checking in on us…

Laurie

Sunday, October 1, 2006 8:41 PM CDT

Amanda's 1 year check up is tomorrow. We left Fl. yesterday and made a stop in South Carolina on the way to visit the aquarium. It was a nice day at the aquarium and then we saw an IMAX picture. Today we've kept busy outside. The weather here is absolutely perfect. Tomorrow is our BIG day. I'll update after we get all of the results - it may take a week or so. I keep hearing Dr. Martin say if she stays clean for a year you can pretty much write off luekemia....

Thanks for checking in on us.............

Laurie

Sunday, September 10, 2006 8:35 PM CDT

I didn't knock hard enough on wood! Amanda has caught a cold. It actually ran through the whole family and I think I brought it from my class. Anyway she is feeling pretty cruddy and Ed is taking her to the dr. tomorrow. Hopefully she won't miss too much school

On a happier note Friday, 9/8/06 was Amanda's 1 year post transplant. We have called it her re-birthday. Ed surprised both girls with their favorite cakes and a dinner out. It seems weird to look back at where we were a year ago. We are blessed and good luck continues to shine on our family.

Thanks for checking in on us...

Laurie

Monday, September 4, 2006 7:40 PM CDT

Amanda is so very upset after hearing the news of Steve Irwin's passing. If you remember we were set to go to Australia before her relapse. It was her make a wish to visit Queensland Zoo and hopefully meet Steve Irwin. In fact our package and tickets arrived only days after finding out about her relapse. While we were at Duke Amanda's cousin in England wrote to Australia's Zoo and explained Amanda's situation, that she was going to go to the zoo...relapsed...now at Duke....translant...Anyway, Amanda received a wonderful package from the zoo with all kinds of great items and a nice note from the Irwin's wishing her good luck. Amanda hung the many pictures and autographs on her hospital wall.

The news has been very personal for Amanda and it pains me to see her so very upset. Amanda wrote a sweet note to the zoo and Terri Irwin along with a nice picture she made while at Duke. We mailed it today and I am sure it will arrive in heavy company at the zoo.

Monday, August 28, 2006 7:19 PM CDT

Amanda is feeling great. She has bee in middle school for 9 days and all is well. She hasn’t caught a cold or a virus and she loves her teachers. I am soooo happy she is adjusting well to being back in civilization with the other middle school kids. Syndey is also loving her teacher and my students are so very sweet. I am really lucky to have such a great class this year. I am looking for wood so I don’t mess up my good fortune. Amanda will go back to our local dr on the 21st of Sept and we’ll return to Duke in October for her 1 year studies. I can’t believe it’s been almost a year!

Well gotta run and get ready for this hurricane.

Thanks for checking in on us…

Laurie

Thursday, August 10, 2006 10:28 PM CDT

Sorry for the lack of a recent update, but there isn't a lot to tell. Thank goodness. Amanda continues to progress and there are no real concerns about her health. With that said she is going to the dr. tomorrow for a check up. Last night she wasn't feeling well and I noticed a few bruises on her legs tonight. She also has a small rash on her thigh. Really, I am not overly concerned I think it is just regular kid stuff.

We are all getting ready for school. I've already started and the girls will join the early morning routine next week. Sydney will go to school with me so it is really early for her as we leave at 6:30. Amanda will start middle school so she has a later start. I think Amanda is happy, but somewhat jittery about starting school again. I know it will take some getting used too, but she'll be fine.

We return to Duke for her 1 year appointment and tests in October.

Thanks for checking in on us....

Laurie

Monday, July 17, 2006 8:10 PM CDT

We are all back home…Amanda had a blast at ROCK camp. She kept busy with all the activities and animals that are at camp. This year there was even a cooking venue, which is great for Amanda. She did manage to make several minor trips to the patch, I think she wanted to visit with the nurse. Sydney’s first camping experience was not very good. I picked her up on Friday and she was literally covered with bug bites. She must have had over 200 bites. Apparently she was eaten alive by no-seeums (sp?) every night. I told the camp nurse and director to call me if she was bitten, but because she did not complain they didn’t call me, bad choice. She visited the nurse everyday and the nurse applied an ointment and antibiotic cream to each bite. Needless-to-say she will not be returning to camp welaka.

Our Keys trip was great and the salt water did wonders for Syd’s bites. We had a great time on the water and the girls had a blast tubing and snorkeling. I took a ton of pictures, but cannot tell when they will be downloaded. We even managed to pack in a movie or two. This year we took the girls to Key West and had some pictures taken at the Southermost spot in the US. I am hoping to make a day trip to Key West next year.

Thanks for checking in on us…

Laurie

Monday, July 3, 2006 9:53 PM CDT

Yesterday I was able to get both girls off to their respective camps. Amanda is at Boggy Creek just North of Orlando and Sydney is at Camp Welaka enjoying the girl scouts. This is Syds first year at sleep away camp and last night I tossed and turned worrying about her. Hopefully the experience will be a good one and I don’t get an early departure call from the camp. Amanda is a pro at sleep away camp, this is her 5th year. I am sure she is having a ball. Ed and I are going to keep busy with projects around the house. We all leave for our annual trip to the Keys next week and I am sure there will be lots to update about when we return.

Thanks for checking in on us…

Laurie

Wednesday, June 28, 2006 2:35 PM CDT

We just returned from our Family Reunion and a check up at Duke. I’ll start with our Duke visit, which went very well. Amanda went through a battery of tests and all seem to indicate she is just fine. There is an important test regarding her immunities that will take about a week to get back. Dr. Martin seemed pleased with how well Amanda continues to progress. He seems to chalk things up to what a great match my girls are so we can all thank Syd again! She did have a few unexplained blisters in the back of her throat, but the dr. seemed to think it was a virus. Amanda will go back to our local oncologist in about a month and I hope the sores have gone away by then.

Prior to going to Duke, we sent 5 days in Ohio visiting Ed‘s family and attending the annual family reunion. We arrived at camp of Thursday to a muddy rainy mess. The weather didn’t cooperate at all until Saturday. Amanda had a ball visiting everyone (there was about 60 people there) and camping. There was a lot of boating, swimming, fishing, basketball, bocce, hay rides, drinking, crafting, billiards, and laughing to be had for everyone. Hopefully next year the weather will cooperate so we can leave the slickers at home.

We arrived back in West Palm late last night and today was spent gathering back animals and unpacking. Amanda and Sydney will both leave for a week of Summer Camp on Sunday so it is LAUNDRY and cleaning before then.

Thanks for checking in on us…

Laurie

Monday, June 12, 2006 10:32 PM CDT

Tuesday, May 30, 2006 11:56 PM CDT

Amanda is feeling great. We are leaving for Ed’s Family Reunion and Duke in a few weeks. I can remember last year at the family reunion everyone said how well Amanda looked and seemed. We had no idea that her cancer had come back, it was only a few short weeks after that we knew he’d relapsed. Time has been flying by since we’ve returned from Duke. We have been home since December and we have been keeping busy.

Sorry for the lack of a recent update, but this is why: Our latest project has been moving Amanda into a larger room. When she relapsed last year we totally redid her bedroom, replaced the carpet with wood flooring, painted, cleaned everything in sight etc…. When we returned it was great because it was easy to keep a small room clean and the air clean. But she needed a larger room. It has taken us about 3 months to convince her of this…. Imagine being 11 and your parents asking if you wanted a large room with a walk-in closet and your own bathroom. I would have jumped at the idea, but Amanda doesn’t much like change and it took a lot of convincing. We have been working on the room for about 10 days now and everything is a mess at my house. The room was a second master and we have been using it as an office/craft room. Tonight she is finally sleeping in her new room! The walls have been stripped of wallpaper, repainted from ceiling to trim. The carpet has been removed and replaced with wood, there is a new ceiling fan and window treatments…..It has been tiring. And we aren’t quite done yet. Next week we tackle the bathroom. Therefore if you don’t see an update it is because I am exhausted and, most important, Amanda is just fine.

Thanks for checking in on us…

Laurie

Wednesday, May 10, 2006 11:31 AM CDT

Amanda's piano recital was very nice. All the kids played beautifully and Amanda did an excellent job with both of her selections.

Amanda wasn't feeling well Monday night and by Tuesday she developed a low grade fever. Her symptoms lead me to believe she had a regular cold, but we took a ride into the dcotor just in case. She has strep and a sinus infection. Her blood counts are good, except the usual rise in her WBC that would come with any infection. She started an antibiotic and zyrtec. Yesterday she took a long nap in the afternoon and didn't have much of an apetite. Today she is feeling much better and doesn't have a fever. She is still taking it easy and she has made herself at home in my bed.

Thanks for checking in ....

Laurie

Thursday, May 4, 2006 4:19 PM CDT

Amanda is looking and feeling just fine. She will go back to our local doctor in about 2 weeks for a check-up. She is very antsy at home and is anxious to go back to school in the Fall. She’ll start Middle school so I’m not exactly anxious about her starting. I can remember Middle school very well, the boys were maniacs and the girls were starting to find things out…Ok that was about 40 years ago. I am sure she’ll do fine and I’ll get over my anxiety around this time next year. I know I am anxious to go back to work and Sydney is excited about going to school with her mom again.

Amanda has a piano recital this weekend at the Hible Art Museum. She likes recitals, but is always nervous when she finally plays. She is playing two pieces and I am sure she won’t shatter any of the priceless artifacts at the museum. She is also spending the night at a friends this weekend, this is a first since we’ve been back. I am not sure that we will do with Sydney, maybe a movie.

Sorry I haven’t updates as frequently, really it is a good thing. Not updating usually means things are going well and life is relatively normal.

Thanks for checking in on us…

Laurie

Tuesday, April 18, 2006 7:57 PM CDT

Dr. Martin e-mailed me back and I feel much better now. I've included his e-mail.....

Not to worry. This test never has a result better than >98onor. Nobody makes a 100

Sometimes there are a few of the patient's lymphocytes that survive the transplant. As long as they stay at a very low amount there is no trouble. We will monitor every 6 weeks until we know that the levels are stable at a very small amount (<2

If the levels are rising then we will be concerned and will likely add some extra cells from her donor. That often takes care of the problem. But we are not at that point yet. Let's see what the next test tells us.

Take care and try not to worry too much. Your a mom, so I don't even try to tell you not to worry at all....

Laurie

Monday, April 17, 2006 10:36 PM CDT

I've posted Dr. Martins news regarding Amanda's recent tests. I have e-mailed him back with a lot of questions and I am very concerned.

Looks good. >98onor. They did detect some of her original lymphocytes - which happens sometimes. We'll want to keep a close eye on this...

Tuesday, April 11, 2006 9:26 PM CDT

We made it to North Carolina in great time Saturday. Sunday the girls enjoyed playing with the animals and riding the horses at our friend's house. Monday was the big day for Amanda in Durham and things went very well. It was a very long day and the clinic was running behind so that only added to our wait. We made the rounds for all her specialists appointments then Amanda had her blood draw and Dr. visit. Everyone was happy to see Amanda doing so very well. Dr. Martin was pleased and he released her to do many normal activities and also to eat a more varied diet. We will have additional test results Friday that will tell us how her immune system is actually functioning. Dr. Martin believes, just by the looks of her tests and appearance, that she will be just fine. We had the opportunity to see another family from West Palm and they are doing very well and things are progressing nicely.

Today we took the girls to the NC Zoo. It is a great zoo with fantastic exhibits and attractions. It is a huge zoo and it took us an entire day to see. Unfortunately Amanda got a little too much sun on her chest. SHe had a button down shirt and the V area got burned. I have to be much more careful about putting sunscreen everywhere....hopefully it will clear up tomorrow and we will have no problems.

Thanks for checking in...I'm exhausted.....

Laurie

Friday, April 7, 2006 2:26 PM CDT

Amanda’s doctor’s appointment went well and there is nothing remarkable to update about her health. We have an appointment at Duke on Monday for her 6 month studies (one month late). It will be a long day, but I am sure the results will be positive. Amanda has been flirting with a cold for a few days. I’m hoping it’s just allergies and she will not develop a full-blown cold.

In the last 2 weeks I’ve attended 2 funerals for people who have lost their battle with cancer. The first was a friend’s 80 year old mother and the last a 6 year old boy. I found them both very difficult and I did not stay for the entire child’s funeral. At the Mother’s funeral there were pictures of a full life with marriage, children, grandchildren, celebrations and many full memories. The funeral for the child also had beautiful photos, but they were of a life cut short. The photos were of a baby, a toddler and a young child not yet in school. Photos of young parents doting over a first child, it was simply very upsetting. The parents are very remarkable. There were many families at the funeral with children that have or had cancer. It is a strange sort of club and club that you pay a high cost to attend; a club that outsiders can’t truly understand. I feel blessed everyday for Amanda and Sydney. Having a child with a serious illness puts so many things in perspective and in order of importance. When we had Amanda I immediately though about her future, immediate and far off. I thought about her first step, words, food…we bought a college plan….I told Ed we would need an RV one day to follow her around. Expectations are a good thing to have for your children, but things can change in the blink of an eye. With everything we have been through I still think and plan for her future…college, career, marriage, grandchildren… It was heart wrenching to see a young family who has lost there young child and their expectations for him.

We attended a camp for families with seriously ill children. There were about 180 people at the camp. Children in all stages of the “game”. The retreat is amazing with wonderful volunteers and staff members. There was one particular mother with her son who is battling cancer and has been sent home with hospice twice. In addition, she has a 3 year old daughter with sever developmental problems. I often think “there for the grace of god go I” and this weekend I said that many times. I feel so lucky and blessed to be where we are right now. Yes sometime is really stinks, but truly it could be sooooooo much worse.

If you have a chance take a look at the camp’s webpage. www.boggycreek.com, Amanda has attended summer camp there since she was 7 and we have attended 2 family retreats.

Thanks for checking in on us…

Laurie

The new pictures are huge. I'm working on getting them smaller. The homepage picture is not showing up.....

Sunday, March 19, 2006 9:01 PM CST

WOW it has been a busy few weeks….sorry for the lack of any updates. Amanda’s birthday was great and she loves her new puppy, Duchess. I hope to have pictures posted soon, please don’t hold your breath. Amanda has an appointment this week with her oncologist and I am sure it will be uneventful (knocking on wood as I write).

An interesting thing happened the other day while I was picking up Amanda’s prescriptions. As you can imagine I am a regular face at the pharmacy and many of Ed’s hard earned dollars go to the pharmaceutical companies. Ok I digress….While there a new person behind the desk asked me if I wanted to pick up Ed’s medication as well as Amanda’s. I was surprised and told her she was mistaken and that Ed didn’t have any prescriptions. She confirmed his address and date of birth so I said ok and I paid my co-pay. As you can imagine I opened the bag and took a look-see. I was surprised to find a very strong narcotic; the kind of narcotic that many drug users would be thrilled with. When I got home I asked him about it and he was as surprised and I was about the entire situation. After talking about what we should do and figuring it was some scam we called the police. They were not surprised at all about it and they opened an investigation. They took the drugs and are going to question the pharmacy. I am not sure if they will catch the person(s), but it was really strange.

Thanks for checking in on us…

Laurie

Thursday, March 2, 2006 8:30 PM CST

Amanda is feeling fine and growing more and more hair daily. She was busy this week with FCAT. She is taking the test at home and the woman administering the test is just wonderful. Amanda is very bright and I am sure she will pass the tests without any problem. She will be starting the 6th grade math book soon and she is very happy about the challenge.

Amanda’s birthday is on the 11th, she’ll be 11! She is happy that I caved and will allow some friends over. I told her next Friday evening from 4 - 9 she can have about 5 girls over for a movie and pizza. Grandma is coming over to help with manicures for the girls - it should be interesting…. The last time she had a party at the house she was 8 and her guinea pig went toes up… We had a funeral for the little rodent at 9 p.m. with a box and flashlight in hand. It was actually pretty funny and a story the girls will never forget.

Sydney had a wellness checkup for summer camp today. She is spot on where she should be for her age. She was just thrilled there were no needles involved.

Thanks for checking in on us…

Laurie

Thursday, February 23, 2006 11:42 AM CST

Amanda is looking and feeling great. It seems funny to open all of my update with similar words. The reason it seems funny is that prior to relapse those were the words chosen to begin updates. In fact, her relapse came as a huge shock to everyone, because she was looking and feeling great. That is one of the scary things about cancer…. it sneaks up on people. I don’t think there is anything lurking in the unseen cell count, but just a little food for thought….

Amanda went to the doctor today and her counts were all good. She hasn’t needed any blood products or boosts since before we left Duke. There is one issue of concern, her big toe is sore again. She will start another round of antibiotics and we are soaking it in Epson salts once a day. I have a feeling she will eventually have to have surgery on the toe, because we are simply treating the symptoms not curing the problem at this point. Amanda’s puppy is in and we are all thrilled. I am going to pick it up in North Carolina next month when I go up to retrieve another one of our pets. We actually bought a brother and sister combo, but plan to sell the brother when we get it down here. They are very cute, 7 week old, chocolate labs. The girl, which Amanda wants, is a rich chocolate and the boy is lighter chocolate. For now my friend in Thomasville will be puppy-sitting. They are in good hands as she is a vet tech with her own boarding/training facility that has great kennels.

Sydney lost another tooth yesterday. At the rate she is dropping teeth she’ll need to go on a liquid diet…

Thanks for checking in on us…

Laurie

Thursday, February 16, 2006 9:03 PM CST

Sorry I haven’t been very diligent about updating regularly. Honestly, there hasn’t been a whole lot going on and daily updates seem silly. But seeing as how it has been a while there are a few items to tell you all about.

First, Amanda continues to progress remarkably well and she is feeling and looking better every day. Dr. Martin gave us the okay to go a few places and so we jumped on the opportunity to leave the house. Amanda and I went to a bead shop and she made a name bracelet for herself. I made one for Sydney and they really turned out great considering it was our first time. After making bracelets, we ate alfresco at the pizza joint next door. Today Amanda went to see the endocrinologist at Memorial Hospital in Hollywood. I have to say we really like the doctor and really liked the hospital. The doctor spent a great deal of time speaking to us about Amanda and making suggestions. We never felt rushed and she was wonderful with Amanda. Amanda also had a hand bone x-ray to check her bone density. Turns out from the density of your hand and wrist bones at certain ages you can predict growth. Pretty neat hey!!! Amanda is very tall for her age, almost as tall as I am, so soon we’ll know if she is almost done growing or just starting. Amanda will have some blood tests done next month for the doctor and we’ll return in June. For now the doctor wants to see how she continues to progress and wants to give her a bit more time post-transplant before doing the blood tests. Amanda also went back to piano lessons last week and she has been practicing. I was surprised that she didn’t seem to forget much. Mind you she is no Beethoven, but she does pretty well and it is a nice activity.

Sydney had a traumatic Valentine Day. She forgot her valentine’s box , cards and candy on the bus. She was completely inconsolable and took a 3 hour nap. Valentines Day is such a big day for a first grader, she spent so much time decorating her box, I let my kids do their own decorating, labeling her cards etc… Then to leave everything from her party on the bus was simply too much for her. I was trying to make her feel better, but alas sometime a nap is all you need. The next day she found out her friend took her things home so in the end it turned out ok.

Ed has been busy restoring his MBG and actually got it registered and insured last week. It seems to be running pretty well and he plans to start taking to work. The girls don’t want to ride in it until he “gets the body work done”. It is really a labor of love for Ed and a great learning experience.

I have been busy making a quilt for a good friend of ours that is getting married Saturday. In fact, he is the man that introduced Ed and I 15 plus years ago. I am only hoping it is done in time, my fingers are raw! I have also been helping out at Sydney’s school a few days a week. I really like working with kids and it has been nice helping one particular child with her reading. I have also been working on Amanda’s one and only birthday present this year. We are getting her a lab puppy. We are buying it in North Carolina with the help of my friend and I’ll bring it home next month when I go for a visit. Unfortunately, I have not had any luck finding a chocolate lab so it looks like she’ll have to get a black lab. We have been talking about her present for many months and Amanda is simply over the moon about getting a new addition to our already hectic household. Those of you that know us, no I haven’t lost my mind, it is simply on loan to someone else for now.

Thanks for checking in on us…

Laurie

Tuesday, February 7, 2006 4:03 PM CST

Amanda had her stitches removed yesterday. She continues to do very well and we have no real complaints. She is driving me crazy about going swimming, but grandma’s pool is tooooo cold so she’ll have to simply wait a few more months. Ed suggested swimming in the bathtub, which went over like a wet blanket.

Big news today for Sydney! Today was the first day she took the school bus home. I was a very nervous mom waiting for her to arrive. The bus was about 15 minutes late and I was just about to call the school when it rounded the corner. The reason we are having her ride the bus is simply her school has so many car riders it takes about 30 minute of waiting in line to get her. I figured she could take the bus home and walk the rest of the way from the stop in the time I spend in line.

Thanks for checking in on us…

Laurie

Tuesday, January 31, 2006 6:43 AM CST

Things went very smoothly yesterday at the hospital. There were many running bets about what time we were actually going to be discharged. Everyone was on the ball and we were on the way home around 1 p.m. Amanda had labs drawn an eco and her surgery in 6 hours, which is a record. The surgery went very well and there were no complications. I’ll have to change her dressing every day for a week. The great news is Thursday she can get the site wet and her long awaited shower is in order. Next week she’ll have her stitches removed; she only has 2 stitches. The day did tire her out and she came home and napped for about 2 hours. She was a little sore yesterday, but that will pass.

Speaking of the hospital….we were in short stay and get wind of some very interesting news. It seems while we were gone, the hospital in its infinite wisdom did away with an important position. The oncology floor had a dedicated research nurse that was in charge of educating the parents about their child’s illness. She also handled the training for discharge and she was simply a wonderful resource for the parents. I’d heard the hospital was really profit driven now and was doing major cuts, but was blown away by this news. The kicker is they did it while she was on vacation. In the 4 years we have been going to St. Mary’s things have definitely gone down hill in the service and quality department. Maybe another local hospital would be willing to open a pediatric oncology department?

Thanks for checking in on us…

Laurie

Tuesday, January 24, 2006 1:33 PM CST

Amanda is doing great and everyone in the house is healthy. I guess a lot of people were sick with whatever was going around. Amanda is scheduled for her surgery on Monday and I expect things will go smoothly. There has been one change in plans. After speaking at length to her doctors and Ed and I discussing things, she will not have a port put in place. We are optimistic she is well on the road to recovery and the changes of her needing an iv are slim. We had her blood drawn from a vein during her last checkup and it went fairly smoothly. If problems occur and she needs blood or becomes ill they can place another temporary peripheral line. Amanda isn’t sold on the idea, but I think she’ll come around (she doesn’t have a choice).

I went to school for a meeting regarding Amanda’s home schooling today and I was really pleased to see everyone. I am anxious to be back at school next year looking at 20 + students. I know Amanda is anxious to go back to school. She thinks I am a hard task master…

Thanks for checking in on us…

Laurie

Tuesday, January 17, 2006 9:13 AM CST

Amanda is feeling great and things on the scheduling front are going surprisingly well. Amanda's surgery is set for Jan 30. Although the surgeon was, at first, reluctant to do the proceedure. His main concern was infection caused by the surgery. He thought removing the broviac was great, but didn't want to put a port in place. Ed explained about Amanda's bad veins and the problems we have getting blood. Hopefully everything will go well and we won't have any infection issues. She is extremely anxious to get it over with and to finally "take a proper shower.", as Amanda says.

Amanda sees her oncologist Thursday and I hope her counts are good. We REALLY don't need a platelet issue right before surgery....

Thanks for checking in...

Laurie

Thursday, January 12, 2006 9:13 PM CST

FINALLY! I’m feeling better thanks to some great antibiotics. Amanda is back home and I can actually breath and get out of bed. Sydney started complaining about a stuffy nose tonight, but with her asthma and allergies it is hard to say what is wrong. Amanda has been feeling great; she has no complaints about her health. Monday we have an appointment with her surgeon and hopefully things will go well and she will have her surgery sooner rather than later.

We have been having so much fun with the new addition to the family, Snuggles. As you can see from the pictures, Sydney just loves him to pieces. Snuggles goes in for his pre-op appointment tomorrow. He’ll be neutered next week.

There isn’t much more to report today. Thanks for checking in on us.

Laurie

Sunday, January 8, 2006 9:52 AM CST

Amanda is feeling great, which is much more than I can say. I woke up around 5 a.m. with a sore throat. Amanda is going to stay with her grandparents for a few days. I am hoping I just have a sinus thing, but you can't be too careful. Ed wasn't feeling very well either, but he worked a double and was out of the house for 48 hours.

I hope everyone enjoys the new photos in the album. Amanda continues to look better each and every day.

Thanks for checking in on us...

Laurie

Friday, January 6, 2006 9:03 PM CST

We are in the mists of scheduling nightmares! But today I did get somewhere… that somewhere happens to be Joe DiMaggio Cancer Hospital in Hollywood. Low and Behold they have 3 endocrinologists on staff… clarification… Pediatric Endocrinologists…. The icing on the cake is we only have to wait until February 16 to see her!!! Yes I am happy… The only pediatric oncologists in Palm Beach County wouldn’t even make an appointment to see Amanda without a reference letter from her oncologists (our insurance doesn’t require references we have a great PPO). Then it would be at least 3 months until she was seen. Ed thinks I am getting frustrated with things here because of the lack of communication within the medical community. The simple fact is this -- if you are really sick you need to go somewhere with a Medical University to really get proper care. This is unfortunate and all too true. Miami has a university but I don’t like the prospect of getting in trouble in Miami or god forbid lost. (p.s. I was born there, but don’t go there). Basically, we have to keep an eagle eye on Amanda’s care and keep pushing for her. It is truly a full time job, not to mention all the insurance hassles…

Amanda gets a certain breathing treatment about once a month to help keep pneumonia and other icky things at bay. She is due next week and we were supposed to go to the hospital for the treatment. Ed and I were really concerned about bringing her to the hospital unless it was a true emergency. I contacted her Home Health agency who would be happy to come and give the same medication by IV, which she doesn’t get. For some unknown reason the insurance won’t cover the breathing treatment only the iv stuff??? Anyway I was mentioning that to my mom and Amanda’s grandpa walked in from work and said, “I can do that at home”. I wasn’t even thinking about Grandpa, who is a respiratory therapist. So our day was good Amanda will see her specialist next month and we don’t have to go to “germ central” to get her breathing treatment.

LOOK AND THE NEW PICTURES IN THE PHOTO ALBUM!.

Thanks for checking in on us.

Laurie

Wednesday, January 4, 2006 10:02 PM CST

Ok, there are a few very important things I DO miss about Durham. One of those important things is the professionalism of the medical community. Since arriving back to West Palm it has been one hassle after another when it comes to home heath care and scheduling. Every time I need supplies I feel like I have to beg and plead with the company. In fact, just the other day I needed dressing items and the person taking the order could simply not believe masks were necessary. After waiting on line for a pharmacist I had a long drawn out conversation explaining every single item needed. Finally I was so frustrated, which takes a lot, that I told her to call Dr. Martin to verify the order. On top of the frustration of placing an order there is the wait time, usually a few days. In Durham I called and spoke to the same person assigned to Amanda every time and she was very nice, helpful and it was not 20 questions each time I called. In addition to the fact that they took the order the order was delivered the same day….AND getting appointments with specialists, which I realize is always tedious, has been a laugh a minute joke…I am still waiting for an endocrinologist to call me and it has been a week…. OKAY I’ve vented.

Amanda is great, she is going to the doctor tomorrow. Hopefully this will be her last weekly appointment. She should start going twice a month soon. A week from Monday she has an appointment to see the surgeon and then with luck we will get her surgery scheduled before Easter! (still venting)

Thanks for checking in on us.

Laurie

Saturday, December 31, 2005 11:17 PM CST

Happy New Year!!! We’ve had an interesting year to say the least. I certainly hope our 2006 is much more mundane than our 2005. Amanda will not soon forget 2005. I hope she can one day look back on the experience with clouded vision. I don’t want her to remember being so ill and all the horrible experiences she had to endure. I hope she will remember the fun experiences and take the rest as a life lesson.

I really don’t want this update to be ho hum or poor us…. So on I go….

Amanda is feeling great, a little runny nose, but nothing to worry about. Her doctor’s appointment went smoothly, nothing to be alarmed about. In a few weeks we should go to every other week appointments. They are switching some dosages on her medications and soon she will see the surgeon.

Sydney is enjoying the Christmas Holiday and I am enjoying spending time one-on-one with her. We spent Thursday at the Mall using some gift cards she received. I think it is important to have time alone with both girls. Ed and I have always tried to have special time with the girls.

I have a thank you to go out to our secret Santa. The post team had gifts for everyone delivered to them for us and there was no name only “secret santa”. Thank you for the gifts the girls had a Christmas after Christmas, which was very exciting.

Thanks for checking in on us.

Laurie

Tuesday, December 27, 2005 2:42 PM CST

WOW what a great Christmas! It was soooo nice to be home and that was the greatest gift in the world. We have been getting right into the swing of normal life. The girls bickering over the little things and Ed and I enjoying our home.

Amanda is doing just fine and looks and feels great. She has been slowly building up her stamina, but I know it will take a little while for her to get her strength back.

Ed is keeping busy in his garage making up for lost time on his MGBs. Mostly it is frustration, but he enjoys working on his projects. He is also back to work, which he really enjoys. Honestly I don’t know many people who truly love their job. If we won the lotto tomorrow I don’t think he would quit.

Sydney is thrilled to be on break and she is having a ball with her new puppy. We have been putting the finishing touches on her room redo and it looks just great.

I am keeping busy trying to simplify the items in my life. I think I need to have a huge garage sale and just get rid of the things that just take up space and are seldom , if ever used.

Thanks for checking in on us.

Laurie

Wednesday, December 21, 2005 12:43 AM CST

It has been a very busy week. We managed to get the house decorated and Ed and I went shopping last night. There are still a few odds and ends to get, but I am very proud of the progress that has been made. Amanda continues to do well and we have been in full school mode this week. Basically from 9 - 12 she and I are mulling through her school work. I feel we have so much to catch up on that we are in hyperspeed to get it all done. Fortunately Amanda is extremely bright and I know she will manage to get 5th grade done on time.

We went to the drivein movies Saturday and saw Narnia. Amanda has the books and we have enjoyed the books on tape several times. The movie was wonderful, with awesome special effects. Ed and I think we will take in a movie every week. Amanda isn't able to go anywhere in public (no regular theaters, malls, stores, zoos, etc...), but the drivein affords her the opportunity to have some normalcy and we enjoy going.

Amanda went to the doctors today and everything was perfect. I scheduled an appointment with the surgeon in January to schedule her broviac removal and port insertion. hopefully it will get done sooner rather than later....

I hope everyone has a wonderful Christmas. I know we will, especially since I am not cooking. Ed said "let's just do coldcuts and everyone can make themselves a sandwich"... I'll throw some stew in the crockpot and we'll be golden....Great idea Ed!

Laurie

Friday, December 16, 2005 4:09 PM CST

No we did not fall into a big hole one the way home..sorry for the lack of an update. Our computers are stillpacked.

Last update was from the clinic and things were gonig very well. That didn't last for very long though! Around 10 Ed called from the apartment and ask what our timeframe looked like. At that time we were on tract for leaving a little before noon. However, once Amanda's labs came in things changed in a big way. To make a very long story shorter we ended up leaving the clinic around 4:30 p.m. Amanda needed 2 units of blood (+2 hours) and magnesium (+1 hour) and a breathing treatment (45 minutes). While she was getting her second unit of blood she spiked a fever YUCK!!!!! and the clinic doctor didn't want us to leave... Dr. Martin saved us by giving us the okay to go. We decided to simply hit the road and if we needed to stop we would. The drive home was pretty uneventful and there was hardly any traffic. We pulled into the driveway around 5 a.m. Tuesday, exhausted.

We were so surprised to see what a wonderful job Ed's fellow firefighters did to the house and yard. They picked up all the hurricane debris, pressure cleaned the entire house and driveway. Our bushes were trimmed, weeded and mulched and the yeard looked wonderful. The inside of the house also got a great once over. Truly we have been so luckly to have Ed working with such great guys. They worked for him for 4 months and not every place would step up for someone.

Since then we've managed to unpack almost everything and get things put away (mostly). Amanda went to her local doctor yesterday and her counts were wonderful. She will continue to see Dr. Gowda weekly and Dr. Martin will monitor her case.

MERRY CHRISTMAS

Monday, December 12, 2005 7:47 AM CST

Today is the big day!! I am updating from the Clinic and waiting to wrap things up. Amanda has been feeling good and things definately seem on tract for us to leave in a few hours.

We spent the weekend in Thomasville visiting our friends. We will certainly miss Sonia and Eric, but plan to come back for frequent visits.

During our stay in North Carolina Ed has been looking for deer everywhere we go. We have spent many hours traveling the countryside looking for deer. Yesterday afternoon we were in the car for 3 hours looking for deer. Anyway you kind of get the picture.... Last night around 11:00 I was heading for bed and took a peek outside and low and behold right in from of our window were 6 deer. I went nuts and woke up Ed and Amanda and we spied on the deer grazing in the yard. I think it was a sign that our time here was up and we got to see deer -- finally.

We will be heading home soon and should arive around 2 a.m., full car plus 23 dogs and all.

Friday, December 9, 2005 6:40 PM CST

Amanda is feeling much better and her liver and gallbladder are much improved. As long as there are no setbacks we will be heading home by Tuesday. We are in Thomasville until Saturday evening visiting and enjoying ourselves. It is VERY cold, in fact, Amanda and I took the dogs for a walk tonight and only made it to the end of the driveway before heading back in to get warm.

The car is basically all packed and we have very little room left for the remaining items at the apartment. Add to all our stuff two dogs, one about 75 lbs and another( a surprise for Sydney) 10 lbs and you can imagine the 12 hour ride home. We are all very excited and anxious to get back home after 4 months.

Ed loves Sinfeld and watches the program a lot. With that in mind get this -- He has declared his birthday, which happens to fall on Amanda's 100 day post transplant, EDMAS. He even made a big poster with a paper chain attached to count down the days until Edmas. He cracks himself up and it is makig Amanda crazy!!!! Maybe I'll buy him some black and white cookies and a bottle of wine for the occasion.

Thanks for checking in...
Laurie

Tuesday, December 6, 2005 8:46 PM CST

Ok, who didn’t knock on wood yesterday? Amanda had a horrible night and we spent the entire day in the hospital. Around 4 a.m. she woke up with a severe stomach ache that didn’t subside. Eventually she started throwing up and things went down hill fast. Ed took her to the clinic around 9 a.m. and she went to the day hospital around 11 for tests. After a long day, it looks like her gallbladder is acting up and her liver is not functioning well. On top of all of this, she is constipated, which just makes things even worse. The main concern is her gallbladder, which they said has “sludge” building up in it and basically that sludge will have to pass. They tweaked her medications and put her back on iv cyclosporine and added Tylenol every 6 hours. The good thing is once the sludge passes she should quickly begin feeling great again. For now we are on a low fat, low sugar diet with extra hydration and exercise. They said this may or may not delay our leaving next week; they’ll need to see her daily to make a decision on when we leave.

We are all feeling a little low and hoping things get better soon.

Thanks for checking in on us.

Laurie

Monday, December 5, 2005 6:39 PM CST

A conversation with Dr. Martin: As he looks at Amanda’s toe, Dr. Martin says, “Wow Amanda your foot is cold” Amanda replies in a very serious manner “I know Dr. Martin it is because I have long legs”. After a good chuckle turns out she is convinced that the longer a persons legs are, the colder their feet will be! Dr. Martin has a great manner with his patients and Amanda will truly miss his attention. He was very sweet and even brought a camera to take her picture. Next Monday will be the last time he sees her until March. He gave her a few orders for when she gets home, one of which is she has to pick no more than 2 friends that are allowed to come over and visit. Not 2 at a time, but 2 friends that Ed and I are sure are not carrying anything nasty and that will comply with the sanitary rules of the house. Around the house and outside in the yard she doesn’t have to wear her mask, but she should have one with her in case someone pops by. She will not be visiting away from home. Good news, she can eat take out from reputable places, but absolutely no Taco Bell.

There is only one issue that has arisen in the last few days. It has to do with her liver function and they have added a pill that hopefully will help her liver. The thought is with Amanda eating so well the liver is having to work harder. Amanda’s kidneys are back to tip top shape, thank goodness.

We were packing again today and have just about everything taken care of, except the essentials we’ll need. Ed wants to head over to Thomasville, but we have to get the truck serviced tomorrow before anything. I had the tires rotated and balanced about a month ago, but it is has a shimmy so he thinks it needs an alignment.

Wish us luck this week and hope that nothing happens to delay our trip home.

Thanks for checking in on us.

Laurie

Sunday, December 4, 2005 10:10 PM CST

Amanda is progressing each day and she is very excited to go home. Today she told me she thought she was going to cry as soon as she went home. Amanda has almost all of her room packed up and ready for the truck. Tomorrow is an important doctors appointment, they should be taking her off her last iv medication. That means no more being hooked up to a pump and she is very thankful for that freedom.

We spent the weekend at our friends in Thomasville and it was a great distraction. Amanda loves all of the animals and enjoys the relaxation and freedom. We will be heading back to Thomasville on Saturday to pick up a traveling companion. We will be taking a dog back to the acreage for my sister, Julie, and her family. He is a beautiful, sweet and very large dog. He looks a lot like a flat coated retriever, just bigger. Hopefully he will be no trouble on the ride home!!! Amanda is thrilled, she absolutely loves animals. Actually she wanted the dog, but we already have a large dog and we are planning on getting her a lab for her birthday. The plan is in March, while we are up here for her 6 month appointment, we’ll pick up a puppy.

Thanks for checking in on us.

Laurie

Thursday, December 1, 2005 8:45 AM CST

Day 84-

Amanda has done remarkably well this week. Yesterday they discontinued her nutrition. She did loose 1 pound this week, but that is nothing to worry about. We are pushing fluids, because her kidney function was down a slight bit. Hopefully with not receiving her TPN she will become more thirsty and want to drink more. There is only one issue of concern for now, which is her toe again. There is definitely an infection and they cultured the fluid coming from it and placed her on an antibiotic treatment. If you don’t remember when we were inpatient she ran over her big toe with a chair and since then it has not been quite right.

Ed has a new hobby and he is bringing us along for the ride. He is geo-caching, it is rather like treasure hunting using your GPS. People place items and give coordinates and clues to the items. So far he has found about 5. Yesterday we all went to find one in the Duke Forest. It was a bit of a hike for Amanda, but she did just fine. We eventually found the box and it was filled with hero treasures. We placed a package of football cards in the box in exchange for an x-men movie. Today Ed is dropping Amanda and I off at a park nearby to find one near a camel sculpture.

We are counting down the days until we get home. Yesterday we were given our 100th day schedule which will be Dec. 12 (on day 95). Her 100th day checkup consists of several extra tests to make sure she is physically strong. If all goes well we will head home the next day - everyone knock on wood. With any luck we will have the storm shutters down, yard cleaned up refrigerator restocked and a sense of normalcy by Christmas.

Thanks for checking in on us.

Laurie

Tuesday, November 29, 2005 9:00 PM CST

Day 82-

Amanda had a great appointment today. The doctor decreased her nutrition in half and will monitor her blood levels and weight this week. The only little problem is a spot in her mouth that he wants us to keep an eye on for GVH. All of Amanda’s blood counts were great and she didn’t need any iv medications. If all goes well this week and she is able to maintain her weight and nutrition they will get rid of all her ivs next Monday. That doesn’t mean we’ll be heading home next week, but at least it is a start. Amanda has done remarkably well today with every aspect of her healing; eating, exercising, mouth care and her general attitude has been great.

She spent the day making out holiday cards and looking up addresses. We spent the evening driving around looking at holiday lights. To my great surprise there were very few houses that were lit up. Maybe it is simply too early for that? We also rode over to the Duke Chapel and took a tour of the church. It is simply one of the most beautiful churches I’ve ever seen. The detail and size of the church is breathtaking. The inside has ornate carvings and intricate lanterns. The most striking feature is the ceiling which is domed and there is great detail in the concrete. There is also an amazing organ with pipes throughout the entire church. I would love to go to a sermon there to hear the organ. By the time the evening ended Amanda was pooped and ready for bed.

Amanda wanted to get a small tree for the apartment, but I didn’t like the idea. I want to be home decorating our house, even if it is last minute. Hey if we get home too late maybe we should add time to after Christmas to take down the decorations. You know like having blinking lights in February! My neighbors would love that…

Thanks for checking in on us.

Sunday, November 27, 2005 9:02 PM CST

We all had a lovely Thanksgiving and Amanda enjoyed mashed potatoes, green bean casserole and a roll Thursday. Mind you, she didn’t eat an entire serving, but she ate quite a bit. Everyday she seems to be eating more and Friday the clinic let us know they will start reducing her nutrition on Monday. Things seem to be looking up for us and Amanda is very excited. We headed back to Thomasville on Friday evening and just now got back to the apartment. Amanda really enjoys being at Sonia and Eric’s house; she enjoys the company and the animals.

Starting Monday the doctor will need daily lab draws to check how Amanda does with her nutrition being reduced. Unfortunately, that means we won’t be able to go back to Thomasville for a while. Please think positive thoughts for Amanda to continue to eat and for her nutrition to balance out with the reduction. This week is very critical for Amanda’s chances of being home for Christmas.

On a very sad note a firefighter/paramedic that Ed works with lost his battle with cancer yesterday. He was a young man with so much life left to live. It is very difficult to image what his family and child are going through and Ed and I wish them all the best at this difficult time.

Thanks for checking in on us.

Laurie

Wednesday, November 23, 2005 5:04 PM CST

Amanda's appointment Monday went well, but were delayed again and we were in clinic for 6 hours! Apparently there was a problem with the lab and with Amanda's orders. On Mondays she received IVIG, which is blood donors immune systems. Apparently she will no longer need weekly IVIG, but this week she needed 2 units of blood. This is only the third time she has needed whole blood. Once we finally got the blood hung things were going well until they hung the second bag. I looked at Amanda and she was very red and her lips were swollen. They stopped the blood, the doctor came in and they gave her lasix (sp?). Things then got back on track until her last set of vitals before flushing the blood. The nurse took her vitals then ran out to get another nurse and something called a transfusion reaction kit? Amanda's blood pressure spiked and she had a large increase in temp. After about 15 minutes we were okay and on the way out the door. It was truly strange, because Amanda looked and felt great when this went down.

Amanda did start a drug to help increase her appetite and another that coats the stomach. Today she actually asked for eggs and she ate a few bits and half a clementine. I think things are improving daily, but I hate to jinx myself. We are in Thomasville enjoying company and will head back to Durham for clinic Friday.

Happy Thanksgiving. Count your many blessings.

Laurie

Monday, November 21, 2005 0:19 AM CST

Day 73 -

Amanda continues to improve very slowly. She is trying to eat about 5 times a day and we are managing about a teaspoon of food each time. The problem is Amanda is still battling the thrush on her tongue, which makes food taste and feel funny. I am curious to see what they doctor and nurse says tomorrow and what changes, of any, they will make. We do know we are heading over to Thomasville to visit our friends Tuesday through Friday and that means we will be taking inventory of Amanda’s supplies tomorrow.

We happened upon a celebration Friday on our way back from a ride in the country. The city of Burlington. Which is about 40 minutes away, was having their holiday light up celebration. We were not properly dressed for the 30 degree temp., but we had a great time. There was a lighting ceremony, big band, street vendors and horse drawn carriage rides. Unfortunately we were only able to stay for an hour, but we had a great time.

Have you ever seen the bumper sticker on cars that reads “Mom’s Taxi”? Well I need one that says “Mom’s courier”. Amanda needed some winter clothes and the trouble is she is unable to go to any stores. Therefore, for the last 2 days I’ve gone to Old Navy and picked out clothes in various sizes and styles for her to try on for size. I think we got everything figured out today and I only need to make one more return tomorrow. The older my daughter gets the harder she is to shop for, it seems like anything I like she doesn’t!

Thanks for checking in on us.

Laurie

Thursday, November 17, 2005 8:01 PM CST

Day 70 -

Amanda is feeling a little better, little being key here, and vomiting less. Her counts were great again today and our clinic visit went rather smoothly, unless you count the 2 hour delay due to lab error! Usually her clinic visit on Thursday is about 15 minutes; today we were at the clinic for over 3 hours. The results of the scope are in…..drum roll…. they didn’t show anything remarkable. Basically they are calling it a bad case of acid reflux. There is one culture that is not back yet so she will continue her antibiotics until Monday. They have also doubled her protonix which is a drug that is supposed to shut down the ducts that make stomach acid. The only problem we may run into with that is that insurance doesn’t like to pay for more than one dose a day. It is extremely expensive. Hopefully Amanda will get over this problem and her throat will heal before we run into insurance woes…. Basically, once we get this problem under control we will only have to go to clinic once a week. In addition, if she is able to start eating by Monday they are going to reduce her TPN. That sounds like a far off dream, but the nurse thinks she might be able to start eating once the drug is fully on board.

We got a pass for next week to go visit our friends for a few days in Thomasville. The plan is to go from Tuesday until Friday morning. Thanksgiving should be much better with a house of people. Speaking of Thanksgiving, we spoke to Sydney last night and it broke my heart. She asked if she was going to be with us for Thanksgiving, but I told her it wasn’t possible. She was so very disappointed and asked me to promise her that we would have another Thanksgiving when things get back to “regular”. The entire conversation set my night off and I was simply depressed all night. I asked what the chances of being home by Christmas were and the nurse practitioner assured me that unless something new arises we will definitely be home by then. I just can’t see everything getting into place anytime soon…yes, my positive thinking is not as high as usual.

Thanks for checking in on us.

Laurie

Tuesday, November 15, 2005 7:06 PM CST

Day 68 -

Amanda had a very long day yesterday at the clinic. She was still vomiting and feeling nauseated so we were on standby for her endoscope procedure. Amanda was very nervous about the procedure and kept asking the nurses if she would be sound asleep. The waiting really bothers Amanda. She gets very anxious before any procedure, but she is always fine when we get right to business. The staff in pre- op are always wonderful with the kids. The procedure only took about 15 minutes and the doctor came out and showed us her pictures. He took a total of 10 photos of the gi tract. Her stomach was slightly irritated, but her esophagus was extremely red. The doctor took a biopsy of her throat and we should have the results tomorrow. The rest of the area looked perfect. Doctor Martin started her on 2 antibiotics and a very strong antacid. Amanda seems to be feeling better today and only threw up twice today.

Today a nurse from the 5200 floor came by for a visit with Amanda. Amanda had been looking forward to the visit for some time and she was very happy to have the company. I think it was very nice of the nurse to come by and spend time with Amanda on her day off.

There is really nothing more to report.

Thanks for checking in on us.

Laurie

Saturday, November 12, 2005 9:57 PM CST

Day 65 -

Amanda was a pin cushion for the nurses today. Ed thought he contaminated her last good line on Thursday night so today she had to have them all checked. They also needed a small sample of blood from a vein. This is a simple procedure for most, just a little from the crook of her arm. Amanda’s veins don’t cooperate so she had to be stuck in both arms. Tonight the results were in and it showed that 2 of the three lines are still good for lab draws. This is great news, because it leaves room for error in case a line does get contaminated. Unfortunately Amanda is still not feeling very good and she is quite congested. Monday they are going to do a scope of her throat and stomach and I am hoping it does show something. Not knowing what is wrong is worse then knowing what we are up against. Tuesday a favorite nurse from the floor is coming to visit. Amanda is very excited to have her come and visit.

There is really nothing else to report, things are status quo and we are counting the days.

Thanks for checking in on us.

Laurie

Thursday, November 10, 2005 10:57 PM CST

Day 63 -

Amanda is still feeling very sick and vomiting quite a bit every day. No one can tell us why she is so nauseated and why she is unable to keep liquids down. We started giving her 2 tsp. of broth every 3 hours and she hasn’t kept it down since Monday. We were hoping after a few days her body would accept the nutrition, we were very wrong. It is becoming very discouraging and I don’t see how we will make it home this month. By Monday if she is still unable to keep anything down they will scope her throat and stomach to get a better look at things. Amanda will be asleep, but she will not feel great afterwards. They also took some mucous today and they are going to run a viral battery on it and look for any “bugs”. The kicker is that clinically she looks great and her blood counts are very normal. Amanda has lost only a few pounds, she hasn’t lost all of her hair, her color is great etc…. But I feel as though we haven’t made any significant progress in a month. The nurses and doctor keep saying how great she has done…how lucky we are not to have the problems of so many other patients… Believe me, I know we have been truly lucky, but frankly the problems we are having with Amanda are ours and they seem huge.

Thanks for checking in on us.

Laurie

Sunday, November 6, 2005 8:22 PM CST

Day 59 - Here are her counts: (She’ll only get on Monday and Thursday)

HGB (11.4 - 15.5)
RBC (3.80-5.50)
PLT (150-400)
WBC (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Things have been very busy around here the last few days. Friday we went for a ride in the country and the girls had a good time sight seeing. Yesterday I flew Sydney home and it was a very long day. I wish Southwest flew directly into West Palm! We had a 3 hour layover in Tampa; what a waste of time…. I had enough time to go home for an hour or so last night and survey the mess again. My neighbors have been great cleaning up what they can. I left West Palm early this morning and had a short 1 hour layover in Tampa, which wasn’t too bad.

Last night I slept over my mom’s house and at midnight my cell phone rang, it was Amanda. I knew something wasn’t right… She was calling from the truck and Ed was in the apartment calling 911. Apparently the restroom fan in the apartment below ours short circuited and smoke filled our apartment. Ed said at first he only smelled something burning and investigated the apartment. Soon though he saw white smoke coming from the floor in the bathroom and knew he had to get Amanda out. This is generally simple for the average 10 year old. Amanda isn’t average. She was hooked to her two pumps and she isn’t exactly speedy. She put on some shoes and put her pump back-pack on and headed to the truck all be herself. Ed called 911 and was checking things out…typical firefighter, I’d have run like a chicken. To make a long story short Ed banged on the neighbors doors to get them out, the fire department came very quickly, Ed was impressed with the response. They firefighters surveyed the apartment and used inferred goggles to look at the walls. By the time the apartment aired out and Ed cleaned the soot from things it was about 1:00. All’s well that ends well and Amanda has another story for her life book.

I miss Sydney….

Thanks for checking in on us.

Laurie

Sunday, November 6, 2005 8:22 PM CST

Thursday, November 3, 2005 7:01 PM CST

Day 56 - Here are her counts: (She’ll only get on Monday and Thursday)

HGB (11.4 - 15.5)
RBC (3.80-5.50)
PLT (150-400)
WBC (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Yesterday we headed over to Thomasville to visit our friends. The girls had a great time playing with the animals and Amanda felt very good all day. Sydney had been coughing quite a bit over the last few days and when we got back to the apartment she was running a low grade fever. We immediately separated the girls and put a mask on Sydney. I thought I might have to fly her home today, but we waited to talk to the doctor before making any decision. I stayed with Sydney and Amanda went to her clinic appointment with Ed. After describing Sydney’s symptoms the doctor said it is her asthma or allergies. He didn’t think Amanda was in any danger, but if we felt better masking them then to go ahead and do it. We are having Sydney wear a mask when they are in the same room and she is taking some cough medication. We received some great news today! Amanda will be switched to oral cyclosporine on Monday, which removes her from one iv pump. Her nausea is subsiding quite a bit (I can’t find any wood to knock on!!!!) which might be from the tumbs she is taking twice a day? It is so hard to figure things out with her body. She has been having dreams about food and actually tried some chicken yesterday. Granted she only took one bite, but she initiated the tasting.

My plan is to fly Sydney home Saturday and fly home on Sunday. I was tempted to stay until Monday, but the guilt of Ed and Amanda being alone is too much.

I was terrible with Thank You’s last month so if I missed you I apologize.

Thanks for checking in on us.

Laurie

Tuesday, November 1, 2005 10:08 PM CST

Day 54 - Here are her counts: (She’ll only get on Monday and Thursday)

HGB (11.4 - 15.5)
RBC (3.80-5.50)
PLT (150-400)
WBC (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Yesterday was a fun day for Sydney, but Amanda wasn’t feeling all that good. Both girls got dressed up for the Clinic and there were a great deal of activities available. Unfortunately, Amanda wasn’t up to trick-or-treating so Sydney did it for her. We did get good news from the doctor; we’ve graduated to 2 visits to clinic each week. Just to keep things balanced…the ying and yang of things and all… we got some upsetting news for Amanda. She will have to keep her lines in place when we eventually go home. This news was very upsetting, because all Amanda has been talking about is going swimming and enjoying the beach. Dr. Martin said she really will have to wait to do all those things until about March. We were also told that the zoo and other outside activities are strictly off limits until about March as well. Amanda knew inside activities were taboo, but we were hoping some outside activities would be okay. On the medical side of the visit Amanda’s liver functions were a little out-of-wack yesterday. The nurse practitioner told us before Sr. Martin came in and she mentioned that it could be a sign of GVH, which was very scary. Speaking of nurse practitioners there is one in particular that is a real treat (yes that is sarcasm). Dr. Martin doesn’t feel it is GVH because all of her other test were normal and she has no clinical signs of any GVH, her skin is beautiful, eyes clear, no gi trouble, nothing to point to GVH. They took her off her fungus drug until Thursday and hopefully if the levels are down we’ll know it was just the drug. She’ll go back on it and they’ll just keep a good eye on her liver.

Sydney was also able to do traditional trick-or-treating last night with Ed. She filled her bag within an hour and had a ball sorting all the candy and toys. I was shocked to see the full sized candies and really cool toys that people gave out. She was thrilled no one gave out toothbrushes…..

Amanda has had a great day today. She was ill once this morning, but later she had lots of energy to burn. We went for a walk and took a long drive in the country. Sydney even commented tonight while she was washing up that “Sissy had a great day today…” Amanda felt so good that the girls bickered on and off all day. I think it is a good sign when Amanda feels up to fighting with her sister. I will be flying Sydney home on Saturday and flying back on Sunday. There is still no official word about school going back I am only assuming it will be on Monday. If it starts before then she’ll miss a day or two. She did actually get some homework done and we finished a diorama on otters that is due when she gets back.

Thanks for checking in on us.

Laurie

Sunday, October 30, 2005 10:41 PM CST

Day 52 - Here are her counts:

HGB (11.4 - 15.5)
RBC (3.80-5.50)
PLT (150-400)
WBC (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Amanda ended up having to go to the Clinic on Saturday for a visit with the nurse practitioner. Her blood pressure was a little high, but it came down by the time we were able to leave. Her nausea has decreased quite a bit over the last 48 hours. She also has been trying to in-take food, but it doesn’t stay down for very long. She is handling liquids pretty well and I’ll ask if they can decrease her TPN volume tomorrow. We were going to try to take a trip to our friends in Thomasville today, but the day got away with us.

“All Palm Beach County Public Schools will remain closed on Monday. As of 3:00 p.m. Sunday only 118 of the 164 schools have power.” That is a quote on the district web page. I am not sure when the schools will re-open so I’ll just buy the tickets the night before I take Sydney home. I thought Ed was going to take her home, but he doesn’t want to go home until we go for good. Sydney and I will fly into West Palm so that means an overnight stay for me, because flights to and from RDU are only once a day. Amanda is extremely home sick and Sydney keeps referring to “when things get back to regular or normal”. With the blue mood over the girls I’m feeling a bit down as well and Ed is ready to go home too.

The girls are excited about Halloween tomorrow. We are all going to dress up for Clinic tomorrow and I understand there will be lots of activities for the girls. Tomorrow night Ed will take Sydney trick-or-treating in the neighborhood. Amanda and I will hand out candy and watch a movie at the apartment.

Thanks for checking in on us.

Laurie

Friday, October 28, 2005 10:22 PM CDT

Day 50 - Here are her counts:

HGB (11.4 - 15.5)
RBC (3.80-5.50)
PLT (150-400)
WBC (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

While I was in West Palm Beach on Wednesday Amanda was pretty sick all day. Yesterday she was even worse and today started out just as bad. Yesterday she vomited every hour and was miserable. Last night she wanted to go to the hospital, but Ed and I decided to wait, because she had a clinic visit this morning. She spent a great deal of time crying and wanting to go home. I am not sure that Sydney’s visit has been the great benefit I thought it would be. I think Amanda is dreading Sydney going home while she has to stay here and continue to improve. I am not sure what we can do about all of the emotions Amanda is feeling, but Sydney will eventually have to go home without Amanda. Today Amanda’s clinic visit was extra long. I know if you are a parent you have been in a situation where you are sitting in a room with a doctor or nurse describing a bad night your child had. Meanwhile the child is sitting there looking great, fever suddenly gone and a nurse or doctor giving you the “sure your kid was sick..look”. That didn’t happen to us today. Amanda threw up three times in the clinic today, twice with spectators. Once Amanda starting vomiting the nurse practitioner took us and Amanda’s feelings seriously. Amanda’s labs were off today as well and so she got a full days visit in the Day Hospital with fluids and drugs. The theory of her crappy feeling is that she is again having withdrawals from her methadone, which she was taken off of completely Monday. She is back on ½ a pill twice a day. If she does not improve tomorrow she will have to go back to the clinic this weekend for further observations and tests.

Syndey is enjoying her stay with us and we are hoping Amanda does get to feeling better in the next few days. There is a drive-in theater near by and I would like to take both the girls to a movie. We also want to take a ride northwest to see some beautiful terrain.

Thanks for checking in on us.

Laurie

Wednesday, October 26, 2005 10:51 PM CDT

Day 48 - Here are her counts:

HGB 11.1 (11.4 - 15.5)
RBC 3.71 (3.80-5.50)
PLT 117 (150-400)
WBC 11.5 (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Yesterday I was very anxious about the hurricane and Sydney so by the time evening came around I made the decision to fly down and pick Sydney up. I also wanted to check on the house and relieve my anxiety about the whole thing. Today has been a very tiring day. It started at 5:30 a.m. with a ride to the airport and a flight to Orlando. By 9:00 I was renting a car and driving the 2.5 hours to West Palm. I went to the house first and was somewhat surprised by the damage. It isn‘t anything huge, but I was not happy about things. Resigned to the fact that there was nothing I could do about the damage in the few hours I had before leaving back to Orlando to catch my 8:00 p.m. flight, I rode to my sister’s house. Julie had no idea I was coming, because her phone service has been non-existent. I walked in and she freaked, the dog went nuts and my niece and nephew continued their TV watching…. I was able to spend about an hour visiting with Julie, who had power. From there I rode to my mom‘s to pick up Sydney. There was much more damage at her house and the generator wasn’t working! Sydney was over-the-moon to see me and she showed me all the arts and crafts activities she’d been working on. After tooling around for a few hours and I was back on the road with Sydney by 3 p.m. The ride north was awful! What took me two hours in the morning took me 4 hours in the afternoon!! We arrived in Raleigh and Ed picked us up at 10:30.. Yes I’m tired.

Yesterday Amanda was feeling great, but Ed said things weren’t very good today. When Ed picked us up Amanda was vomiting in the back seat and apparently she was ill all day. Her Clinic appointment was fine and they aren’t concerned about her nausea. Sydney didn’t know what to do when she got into the truck. On top of the fact that Sydney was excited to see Amanda then got scared, Amanda was disappointed in herself for being sick. She confided in me that she was disappointed that Sydney had to see her sick again. Sydney wants things to get back to “regular” and seeing Amanda so sick. Just reinforced the fact that we are anything but regular now. I’m not sure when Sydney will go back we are playing it day to day and checking on the school status. I keep thinking there will be some miracle and Amanda will start eating tomorrow and we’ll leave in two weeks. If that actually happened I’d keep Sydney here until we left.

Thanks for checking in on us.

Laurie

Monday, October 24, 2005 8:22 PM CDT

Day 46 - Here are her counts:

HGB 11.7 (11.4 - 15.5)
RBC 3.90 (3.80-5.50)
PLT 118 (150-400)
WBC 3.2 (3.8-12.7) she received a boost today
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Amanda had her big Monday clinic visit today. The doctor is again pleased with her progress and discontinued more pills. She is only taking 4 medications a day now for a total of 7 pills a day!!! We are hoping this will help settle her stomach. Realistically she will only have one more discontinued before we leave and the rest she will continue to take for some time. She is also going to have her tongue painted for the next 3 nights. She is not pleased about it, but it is important to clear up the thrush. The doctor gave us the thumbs-up to go to Thomasville and visit our friends for the day. Amanda can play with the pets, but is not allowed in the barn. I expect we’ll take a day trip this week.

Amanda received a treat today from the Roger’s Family. Thank you for the wonderful activities and treats. Amanda has been busy with the latch-hook all night.

Hurricane Wilma’s eye passed right over our neighborhood. The reports from our neighbor is that we had a little damage to the house and barn in addition we lost some trees. My family said this storm was much worse than the two we endured last year.

Thanks for checking in on us.

Laurie

Sunday, October 23, 2005 9:04 PM CDT

Day 45 - Here are her counts:

HGB (11.4 - 15.5)
RBC (3.80-5.50)
PLT (150-400)
WBC (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Ed sisters left yesterday and we were sad to see them go. We had a nice visit and Amanda was very happy for the company of her cousins. Amanda continues to be nauseated in the evening and we cannot figure exactly why. Today we went for a ride in the country and Amanda took a nice long stroll, which really tired her out. Ed started organizing items to pack up today and we are going to slowly put thing into boxes. I am not sure if we are jumping the gun, but it at least gives us something constructive to do. Tomorrow we go in for our long visit and we are going to ask if Amanda can go to Thomasville for a day to visit our friends.

My thoughts are with our family in South Florida as we watch Wilma taking aim. WOW it has been a very busy hurricane season. I hope the trend does not continue….

Thanks for checking in on us.

Laurie

Friday, October 21, 2005 11:12 PM CDT

Day 43 - Here are her counts:

HGB (11.4 - 15.5)
RBC (3.80-5.50)
PLT 117 (150-400)
WBC 15.5 (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Amanda has been pretty nauseated since Wednesday. We had her taken off a study drug for fungus and placed on one brand. That reduced her pills by 3 a day, but she still is taking about 17 pills a day. We have also had a time with the home health company that provides the drugs we give through her iv at the apartment. We knew she would run out of one particular drug and not have enough for her Friday morning dose. We called and ordered the drug Wednesday. Friday morning came without any deliveries and I had to run around this morning tracking it down. They finally delivered it at 9:40 this morning and she was 2 hours late! Other than problem that are an irritant things are going very well and overall Amanda is feeling better each day. We have another week to wait until they begin pushing her to start eating. They might start a steroid to help her get an appetite. Amanda has never received any steroids so I will be anxious about any reaction.

Ed’s sisters and our niece, Lyssa, and a nephew, Eli, came for a visit Thursday. Amanda was so anxious to see them she got up and dressed on her own Thursday. We have had a very nice visit and Amanda will surely miss her cousins when they leave tomorrow. Ed’s sisters threw Amanda a party will lots of decorations and games this afternoon. Ed and I were tired of waiting for her to get ready and we walked down to their apartment while the girls stayed behind to primp. I was so thrilled when Amanda came into the apartment all dressed and excited. It has been a great distraction for all of us to have company. Lyssa came with us to Amanda’s clinic visit and afterwards Amanda took her to the outside play area and they actually ran around and played. I am sure Amanda misses being home and in school with kids her own age. This has been very hard on her both physically and emotionally.

Thanks for checking in on us.

Laurie

Wednesday, October 19, 2005 3:21 PM CDT

Day 41 - Here are her counts:

HGB 12.6 (11.4 - 15.5)
RBC 4.11 (3.80-5.50)
PLT 107* (150-400)
WBC 4.4* (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Sorry for missing an update last night. Amanda’s pump was not cooperating with us last night. At 7:00 she is hooked up to all three lines, each give a different medication. Two of the lines run her nutrition over 12 hours. Last night one pump kept acting up and eventually Ed simply swapped out the catheter, which seemed to do the trick. This morning her line didn’t cooperate while Ed was drawing her labs. We ended up having to go to clinic to get them done, because he was simply unable to get a blood return. The nurse said it was probably positional and next time to have her move or sit up. All of the activity made for a long night and early morning. Amanda went to the clinic in her pj’s and we were all tired. She ended up needing one medication in clinic so the visit was rather long. After we were done we took a long ride in the country.

The area up here is simply beautiful. The leaves are beginning to change and the terrain is very hilly. There are quite a few ranches and farms and the homes are very quaint. Being up here makes us long to live in such a simple quiet place, but unfortunately jobs are few and far between for Ed. Most fire departments are volunteer and those that are not pay very little. Ed and I are thinking this would be a great area to retire one day, who knows?

For those of you that know me you know how squeamish I am and how paranoid of needles I am. My fear doesn’t make sense and I simply know I have a week stomach. With that said, we were told Ed and I would need a flu shot and today was the big day. I went to the drug store and I was by far the youngest person there, because the shot is only available to high risk now. I am proud to tell you I was a great patient, I didn’t move, faint or make a sound! Ed isn’t afraid of needles or anything, but is convinced the shot is going to make him sick. Let’s hope neither one of us come down with any symptoms over the next week.

Thanks for checking in on us.

Laurie

Monday, October 17, 2005 6:23 PM CDT

Day 39 - Here are her counts:

HGB 8.1* (11.4 - 15.5) She received 2 units of blood today
RBC 2.56* (3.80-5.50)
PLT 156 (150-400) she continues to make her own!
WBC 17.5 (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

The morning routine went smoothly today with the exception of being freezing when I left to drop off labs. It was about 45 degrees this morning and my native Floridian blood is very thin. We arrived at clinic about 11:00 the visit went very well today. The doctor is pleased with Amanda’s progress and very happy with her blood counts. They are so pleased with how stable Amanda is that we only go to clinic and draw labs on Monday, Wednesday and Friday now. That was the reason she received blood today. Her hemoglobin was 8.1 and the parameters for receiving blood is 8.0. She was also taken off one medication for blood pressure, which she was taking twice a day and her methadone was reduced to one pill a day. The only area of concern is her thrush. If her tongue isn’t much better by Wednesday they are going to paint her tongue with a blue medication that should work quickly. The kicker is it is not very pleasant. The doctor also told us to completely drop the eating subject with her and if she is still not eating in 10 days they will bring it up again. During our 5 hour stay in clinic Amanda went nuts with homework. She is a very motivated student when she feels good. She was able to complete an entire chapter of decimals and tomorrow I’m going to give her a test. I was very pleased to see her enjoying studying again. She also started a new book, Number the Stars, which she is enjoying.

Thanks for checking in on us.

Laurie

Sunday, October 16, 2005 8:50 PM CDT

Day 38 - Here are her counts:

HGB 8.6* (11.4 - 15.5)
RBC 2.74* (3.80-5.50)
PLT 127* (150-400) she continues to make her own!
WBC 28.0 (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Amanda had a good morning. Her clinic visit was quick and uneventful. Amanda had her dressing changed during the visit and her site looks great. Tomorrow is the long clinic visit. We know for sure she will receive one medication that runs over 3 hours. She also has a doctor visit with Dr. Martin every Monday.

Amanda still is nauseated, but nothing unmanageable. She was able to eat some oatmeal and soup today, but not enough to even measure. We are settling into a great routine. Ed gets up about 6:30 to unhook Amanda’s night medications, draw labs, start her morning 2 hour infusion and start her oral medications. He wakes me up about 8:00 to run the labs to the office and change her caps. We get to the clinic about 10:30 and after clinic we run a few errands. Hopefully we will continue to keep this schedule and count down the days until we are home.

We are having a visit this weekend from two of Ed’s sisters and one niece. They are staying in the apartment under ours, which makes it convenient for visiting. We are hoping Amanda won’t have clinic visits next weekend.

I do like these pretty boring updates, it means things are running along as planned. I also know things are going well when I have my appetite back…yes I’ll be as big as a house by the time I get home!

Thanks for checking in on us.

Laurie

Saturday, October 15, 2005 9:03 PM CDT

Day 37 - Here are her counts:

HGB 8.6* (11.4 - 15.5)
RBC 2.73* (3.80-5.50)
PLT 109* (150-400) she continues to make her own!
WBC 46.8 (3.8-12.7) yesterdays boost really worked!
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

The day began fairly well today. Amanda was only sick once and after she ate 2 sand-dollar pancakes she felt better. Her clinic visit started a little scary when her vitals were taken she had a fever. Fortunately the nurse waited a few minutes and took it again and it was only 99.8. The nurse said sometimes when temps are taken right after the kids take off their masks it may show a fever. We were very happy she didn’t actually have a fever. That would mean readmission to the hospital for about a week. The nurse practitioner is great, we didn’t have to wait at all she followed us from the vitals room into the exam room and we were gone 15 minutes later. The only new development was a new mouthwash regiment. Amanda has terrible thrush on her tongue and so she has to treat the tongue 4 times a day. They said when it clears she should be able to taste food better. Amanda came home after a walk and we all took a nap again. Unfortunately Amanda wasn’t feeling very good this evening and it has been challenging to get her pills down. Amanda’s appetite is not very good, but I am sure it will improve soon.

One highlight of the day was purchasing Amanda’s Halloween costume. We went to a party store, which happened to have all their costumes displayed outside. That meant Amanda could walk on the sidewalk and choose one herself. She chose a vampire vixen, we bought a wig that matches the costume wonderfully. Amanda can’t trick-or-treat, but there are special events at the hospital she will be able to enjoy.

Thanks for checking in on us.

Laurie

Friday, October 14, 2005 9:18 PM CDT

Day 36 - Here are her counts:

HGB 8.8* (11.4 - 15.5)
RBC 2.84* (3.80-5.50)
PLT 86* (150-400)
WBC 5.5 (3.8-12.7) she got a boost in clinic today
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

What an exhausting day it has been. Funny thing exhaustion, it often comes from physical exertion, but can also come from mental strain. Amanda’s medication went through without any problem last night. Ed ended up sleeping in her room just in case the pumps went nuts in the night. He is going to get a intercom/monitor system so if she needs us in the night we can easily hear her. Today we were up bright and early and the nurse came around 8:15 to watch Ed draw labs and watch me change her line caps. She also double checked Ed hooking her up to the morning medication which runs over about 2 hours. After Ed drew labs I ran them over to the doctor’s office. We got to the clinic about 11:50 and were out by 3:20. Amanda’s appetite was not as good today, but we managed a few bites of this and that. Unfortunately when we left the clinic Amanda wasn’t feeling very good so she took a nap. Ed and I were pooped and slept for an hour as well. She ended up vomiting a few times this evening, but nothing unmanageable. We are pushing fluids so she won’t get dehydrated. The doctor said she looks great and doesn’t see anything to be alarmed about. He also thought by Tuesday we shouldn’t have to go to clinic everyday. It was nice to see some familiar faces from the unit at clinic today. Everyone stopped by to say hello and Amanda liked the attention.

Thanks for checking in on us.

Laurie

Thursday, October 13, 2005 8:40 PM CDT

Day 35 - Here are her counts:

HGB 9.2* (11.4 - 15.5)
RBC 2.91* (3.80-5.50)
PLT 96* (150-400) She is making her own
WBC 19.9 (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

I‘m writing this update from the apartment and Amanda is asleep in her bed. Things are going very good and today was wonderful. Amanda was discharged from the floor about 1 p.m. today. She wanted a piece of pumpkin pie so we made one this afternoon and she had 2 pieces! Amanda is on a very strict diet for about a year and she can only eat fresh foods. Thank goodness she and I like to cook. She also ate some yogurt and broccoli with cheese sauce. She hasn’t been sick since Monday and she is really much more active and happy. Ed and Amanda took a walk this afternoon and it did her good to be outside enjoying the great weather.

A home health nurse came by this afternoon and walked us through all her medications and infusions. Another nurse will be here in the morning to watch Ed draw labs then I’ll drive them to the doctors. Amanda will go into the clinic about 2 hours later after an iv med finishes. Amanda is up to 11 different pills a day, some she takes once a day, most are twice a day and a few are 3 or more times a day. It was difficult scheduling the pills so that she is only taking one no more than 15 minutes apart. Ed devised a schedule and I think it will work out great. Amanda will have to go to clinic everyday for awhile, but we think she will be switched fairly soon. If she continues to eat they will discontinue her TPN and that will save us Amanda’s 12 hour iv infusion. For now she gets hooked up to the TPN at 7 p.m. and it runs until 7 a.m.

I took some pictures of her discharge today and hope to have them on line soon.

Thanks for checking in on us.

Laurie

Wednesday, October 12, 2005 7:30 PM CDT

Day 34 - Here are her counts:

HGB * (11.4 - 15.5)
RBC * (3.80-5.50)
PLT * (150-400) She’ll get more tonight
WBC (3.8-12.7) she has been off her boost for 5 days now!
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Yesterday ended better than it began. Amanda seemed to come out of whatever it was that was making her sick. She did not vomit anymore and seemed to be feeling much better and definitely had more energy. We have been spacing her medications out and that has made a great deal of difference. She hasn’t gotten sick at all today and was feeling much better. In fact, on pass today she asked for lunch and she ate a few bites of sandwich and some soup. Ed and I think having family in town has made her home sick. It may have also given her more incentive to get out of the hospital and on the way to recovery and home. Sydney left with my sister today and it was very hard to say goodbye. I slept at the hospital last night and spoke to her on the phone today she said “I don’t want to go home mommy, I want to stay with you”. Yes, it made my heart sad, but I couldn’t let her know that. I told her how proud I was of her and how important it was for her to be in school. What I wanted to say was okay just stay with us.

All of Amanda’s cultures came back negative today and they said perhaps tomorrow we will get out. I hope they are right this time, but I won’t hold my breath. They did want to check one of her medication levels with a blood draw from her arm today, but I flat out refused to let them touch her with a needle. Amanda is a very hard stick and she was told the only reason they would have to poke her after her central lines were place would be if she was very sick. She does not qualify for very sick in my book and the anxiety the draw would cause I knew would set the day off to a bad start. For now I have saved her the anxiety and hopefully her levels won’t cause the subject to be brought back up.

On a much lighter note, the weather is really changing for the better up here. There is a nice cool breeze and it was very chilly last night. Some of the trees are changing, but I know the true nature color show is on the way. It is nice to experience some form of seasonal change.

Thanks for checking in on us.

Laurie

Tuesday, October 11, 2005 2:07 PM CDT

Day 33 - Here are her counts:

HGB 9.5* (11.4 - 15.5)
RBC 3.05* (3.80-5.50)
PLT 67* (150-400)
WBC 18.7* (3.8-12.7)

ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

***TRANSPLANT PICTURES ARE IN THE PHOTO ALBUM****

I’ll start with what happened yesterday. We all had a great day yesterday, Amanda seemed to be feeling pretty good and enjoyed visiting with the family. She took a pass and we went to the apartment. My niece, nephew, and Sydney horse played with Ed and Lynn and it was a loud and active afternoon. Amanda had few complaints and was laughing and feeling better. It was nice to have company and I enjoyed spending time with my sister. Ed and Lynn went back with Amanda to the hospital and Julie and the kids and I went out to eat. Things were looking great for leaving the hospital on Wednesday. Things changed within a few hours…

Apparently during the night Amanda got very sick with vomiting and diarrhea. When I spoke to Ed this morning he had already packed up her entire room. By the time I got to the hospital with Sydney, Amanda had gotten ill 7 times and was a total wreck. On top of everything the nurse let us know Amanda would not be going home Wednesday. The doctors aren’t sure what is the matter and are concerned she will be unable to take her oral meds and they are concerned with her diarrhea. This was veryyyyyyy upsetting to me and I had her primary doctor paged. Ed was angry about the entire situation. Doctor Martin called and basically they are running tests and he is happy with her blood counts. Doctor Driscoll came in soon after I called Dr. Martin and spent quite a bit of time with us. I told him not to even tell me when she might be released….We aren’t sure what else we can do to help. The doctor did say that he thinks the pill situation is problematic. She is now expected to take about 8 pills at a time 2 times a day. That for anyone will cause nausea, but with Amanda it is compounded by the ulcers and the fact she is taking them on an empty stomach. He asked the discharge nurse and Amanda’s primary nurse to come up with a plan so she is only taking one pill at a time, but that means she is taking one every half hour all day. He also still wants her to go out on pass today and that is a problem because she is throwing up and having to use the bathroom constantly. I’m frustrated and hope we claw ourselves out of this hole soon…..

Right about now my shoulders are aching from the weight.

Thanks for checking up on us.

Laurie

Sunday, October 9, 2005 5:46 PM CDT

Day 31 - Here are her counts:

HGB 9.9* (11.4 - 15.5)
RBC 3.22* (3.80-5.50)
PLT 82* (150-400) She’ll get more tonight
WBC 10.1 (3.8-12.7) she has been off her boost for 5 days now!
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Amanda was slow to rise again today, but we managed to make it back to the apartment by 2:00. There has been a different doctor on this weekend - yep, don’t remember his name… Anyway he said he thinks her gi track is healing and that is one reason for the nausea and lack of appetite. He is comparing her lips which have continued to peel and heal to what is going on in her stomach. He asked if the new meds were helping and Amanda said she thought so. She continues to vomit at least once a day, but usually more. Everything is going along for discharge on Wednesday. I am praying there isn’t another set back to delay the discharge. We had another problem with her dressing site last week and we are back to regular dressings now. Amanda has such sensitive skin that she keeps breaking out under the adhesive. I really cannot wait until they pull her lines and replace them with a port.

Sydney should get here by 8 p.m. or so tonight and I am very excited. I am also excited that we will have family for Amanda’s discharge date. The doctors, nurses, staff and patients make a big deal about discharge days with confetti and bubbles and good wishes. It will be nice to have Sydney to share in the special moment. We have been very fortunate. There have been too many families on the unit that have left without their children. I cannot imagine, after going through so much, seeing your child suffer, to leave without them is tragic. I count my blesing daily.

Thanks for checking in on us.

Laurie

Saturday, October 8, 2005 9:08 AM CDT

Day 30 - Here are her counts:

HGB 9.5* (11.4 - 15.5)
RBC 3.06* (3.80-5.50)
PLT 78* (150-400)
WBC 20.6* (3.8-12.7)

ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

***TRANSPLANT PICTURES ARE IN THE PHOTO ALBUM****

Sorry for missing a few days on the updates. Amanda continues to hold her own and there haven’t been any new changes. Her loose teeth are a bother because she is bleeding in her mouth and swallowing the blood when she sleeps. This is adding to her nausea. They have increased her platelets parameters again, which makes me happy. They have also given her some powder stuff that when sprinkled on her tooth causes a clot. The good thing for Amanda is that for now she isn’t supposed to do mouth care. I am really counting the days until her platelets are normal without any transfusions. Amanda went on a pass yesterday and slept the entire time we were at the apartment. She also fell asleep for the night at 7 p.m. I am not sure why she is sooooo tired lately. She also had another iv med switch to a pill that makes 8 pills she has to take at night . I expect she will have one of her blood pressure medications dc today or tomorrow.

Ed and I had a night out last night . We went to a hockey game : Carolina Hurricanes vs. Pittsburgh Penguins. It was a good game, but the Hurricanes won in an overtime shootout. Amanda had two volunteers stay with her and it wasn’t too hard for them, because she fell asleep so early.

My sister , her family and Sydney should be here Monday. They have had an interesting trip so far - they broke down in Atlanta yesterday around 4 p.m. Literally in the city in rush hour they had to pull over. AAA finally got there to pick them up until after 6:30. Hopefully they won’t have anymore roadside adventures.

Thanks for checking in on us.

Laurie

Thursday, October 6, 2005 11:51 AM CDT

Day 28 - Here are her counts:

HGB 9.8* (11.4 - 15.5)
RBC 3.23* (3.80-5.50)
PLT 80* (150-400) she was given a unit.
WBC 6.3* (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

***TRANSPLANT PICTURES ARE IN THE PHOTO ALBUM****

Amanda is feeling about the same today. She is still nauseated and very fatigued. The doctor thinks she can start going back on pass tomorrow, but we are still going to be in-patient for another week. She is trying food pretty well now and we are really pushing the issue.

Ed is feeling a little better, but he is still stiff.

My sister is coming up with her family and Sydney. I am very anxious to see them and we are planning some fun activities that Amanda can also do while on pass.

Thanks for checking in on us.

Laurie

Tuesday, October 4, 2005 10:07 PM CDT

Day 26 - Here are her counts:

HGB 10.2* (11.4 - 15.5)
RBC 3.36* (3.80-5.50)
PLT 53* (150-400) she was given a unit.
WBC 15.1* (3.8-12.7) this is great news (do you know why it is especially good today? My CSC friends can figure it out, can you?)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

***TRANSPLANT PICTURES ARE IN THE PHOTO ALBUM****

Okay now we need to fix the holes in the road! The day started very badly with Amanda vomiting and feeling nauseated. I was not a happy mother and was on a rampage to her nurse about the doctors “she’ll be nauseated for a month it’s normal” stuff. After chewing the nurses ear for 10 minutes about something needing to be done and Amanda should not have to be sick if the doctors can help it….. And I know childbearing is supposed to hurt but they give you an epidural to help now…… and if there is something that can help she needs it… Anyway you get the picture. Frankly I think of myself as being fairly level headed, intelligent and polite, but I also think if there is something that is not working then darn it fix it!!! When you have a child that is ill it is incumbent on you to be your child’s best advocate. That does mean emotions sometimes get in the way but you always have the best of intentions. I was able to cool off before seeing the doctor later in the day, but the nurse relayed my concerns and Amanda’s medications were changed and wouldn’t you know it not only did she start feeling better, but she ate and entire peanut butter and jelly sandwich and some macaroni and cheese!!!! By the way she is on marginal and in 2 doses she is so much better. I hope I didn’t just jinx her.

There was some other news on the bacteria/fever front that was not nearly as good. Basically she has a bad uti and might have e-coli. They started two additional antibiotics today and the doctors are looking at next Friday for possible release to out-patient (yes, that’s another 10 days). While we’re on the search for the silver lining in all of this she should be off some more meds by out-patient. For all the bad news they really aren’t concerned about any of the bacteria they are seeing, it’s so weird to say e-coli no problem. There are actually a bunch of other things that are soooo much worse that these kids can get. I almost forgot the strange and bizarre thing that happened today. Amanda’s lips have continued to peel and basically they look much worse then they feel. When she woke up today I notices a lot of dry blood on them, but really didn’t think much about it. When she did her mouth care there was some blood in the bucket and when she vomited there was a some bright red blood. Blood, Blood, everywhere….. You kind of get used to it a bit. Anyway it turns out that her loose tooth in front is very loose now and is bleeding quite a lot. The doctors are so concerned they stopped her mouth care for a the day and increased her platelets. If it is still bleeding tomorrow they are going to sprinkle this medication on it that should cause it to stop.
On to the Ed factor - his back was a mess again this morning. I slept at the hospital last night and when he came in today he looked dreadful. He says he hurts all the way to his ankles now. He tried sleeping on the apartment floor with the heating pad on, but got no sleep. He actually has an appointment at 8:45 tomorrow morning for his back/shoulder/neck pain/nerve etc… he really cannot pinpoint the exact area or type of pain. I’m at the hospital again tonight and I hope he gets some relief tonight.

Thanks for checking in on us. Sorry this is so long I’m on a caffeine frenzy…

Laurie

Monday, October 3, 2005 8:38 PM CDT

Day 25 - Here are her counts:

HGB 10.7* (11.4 - 15.5)
RBC 3.56* (3.80-5.50)
PLT 37* (150-400) she was given a unit.
WBC 10.5* (3.8-12.7) this is great news!
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

***TRANSPLANT PICTURES ARE IN THE PHOTO ALBUM****

Remember the pot holes I mentioned the other day. Today we slipped into one. Amanda has a fever now, actually it started about 5 a.m. with a reading of 103.1. They started a broad spectrum antibiotic and let us know the fever bought us about another 3 days, at least, in-patient. It will take about 3 days to get most of the cultures back. Unfortunately there are always fevers of “unknown origin” in the cancer ring. Amanda’s fever went down by afternoon to around 101 and she enjoyed an art activity then played and won a game of Life with some other patients and parents. Because she was feverish she will not be allowed on a pass now until we go for good. The floor has 4 new admits today….. Cancer sucks!

Ed officially lost his phone today. Not that he is really broken up about it or anything. We went to lunch in Durham this afternoon after going to Ford to get a part for the truck. We ate and when we went back he realized his phone was missing. We called it twice and both times it rang once and went to voice mail. The third time we called it went directly to voice mail? We called the restaurant and they didn’t find it? Ed will call tomorrow to report it lost and he’ll have to use Amanda’s. If you need to contact Ed, e-mail me and I’ll give you my cell number. Oh yes, his back is a little better. He is staying at the apartment tonight to give it a rest.

Thanks for checking in on us.

Laurie

Sunday, October 2, 2005 10:55 PM CDT

TRANSPLANT PICTURES ARE IN THE PHOTO ALBUM*****

Day 24 - Here are her counts:

HGB 11.2* (11.4 - 15.5)
RBC 3.71* (3.80-5.50)
PLT 43* (150-400) She’ll get more tonight
WBC 11.7 (3.8-12.7) she has been off her boost for 5 days now!
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Amanda is still nauseated and her doctor told us it is nothing to be alarmed about and many teenage patients especially are nauseated for months after transplant. Does this make me happy - not really, but at least he is not worried it is out of the ordinary. Her urine on the other hand is now the color of root beer and they have sent it off for testing. He says it may be a virus that is somewhat common and if it comes back positive her parameters for platelets will be increased again and she will get additional fluids to avoid clots. He said it may become worse and they will check it, especially if it turns bright red that would mean she has more bleeding. I am much calmer about it now and I have spoken to some other parents on the floor and their children have the same thing. In fact they have had it for some time. Amanda will be taken off the PCA tomorrow, but will continue the methadone for another week.

Amanda had a wonderful day today. She played monopoly with a gang of people for 2 hours this afternoon and then went on a 4 hour pass. She also drank some juicy juice and asked for a peanut butter sandwich. I’m not sure if she ate it because she took it back to the hospital. We are still looking at Tuesday for discharge to the apartment then another 45 days in Durham (we‘ve been here since August 16). Ed did the lab draws today and was checked off and I did another caps change. Amanda’s nurse told us that the clinic appointments usually start about 8:15 in the morning so it is going to be early nights and mornings.

Ed is still in misery with his neck/back/shoulder. He thinks it is a pinched nerve, but he cannot exactly pinpoint the spot. I’ve been rubbing him with icy-hot and he is taking 800 mg of ibuprophin every 4 hours and alternating the heating pad and frozen veggies. He is having tingling in his arm and hand so it sounds like a pinched nerve.

I have her transplant pictures to put in the photo album, but they are too big. I’m going to have her grandpa shrink them then I can add them.

Thanks for checking in on us.

Laurie

Saturday, October 1, 2005 9:24 PM CDT

Day 23 - Here are her counts: OOPS

HGB (11.4 - 15.5)
RBC (3.80-5.50)
PLT (150-400)
WBC (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Amanda continues to be nauseated without much explanation. They have increased her methadone in the hopes that will help. Tomorrow is the last day she will be on a constant pain medication. They will keep her PCA as a bolus and they will continue the methadone for a few more days. We also had a surprise with her urine today and last night. Her urine is the color of coffee, so they sent it out for testing. The initial test did show blood, but not a huge amount. With the urine and the coffee ground throw up they have increased her platelet parameters; instead of getting platelets at 20 they are going to 40. I hope this passes quickly and the blood is just old. I am very anxious about any possible internal bleeding they are not catching and if things continue tomorrow I am going to ask for some testing. The floor rotated another doctor today and a new fellow as well. Yes you guessed it I can’t remember his name even though I’ve met him before today. He is the doctor that did the harvesting on Sydney. He also met with Sydney during her pre-op appointment and was really great with her. Amanda likes him as well, he has a good bedside manner. The doctor said everything looks great and was immensely surprised about how good Amanda’s lungs sound. He told her that she must be walking a lot and Ed, Nurse Andrea and I all laughed in unison. He said she is looking great, her organs are strong and her blood counts are great. Now maybe tomorrow he’ll have an explanation for the urine?

Amanda went on a 4 hour pass today with only a small fight and she enjoyed her time at the apartment. We are taking loads of stuff with us each time we leave the hospital so we aren’t overwhelmed with items when we go for good. It is amazing the things you accumulate after 31 days in the hospital in a room that is about 13 by 15.

Ed’s back and neck are still awful. He is simply miserable. He put three of those adhesive heating pads on today and then later a frozen bag of veggies. Next Thursday he said if he is still in pain he is going to have a chair massage on the floor. Thursdays there is this great guy who gives parents chair massages. I’ve had one and it was great. Ed being the man he is said no way I’m not letting him rub me! So you can image how miserable he is to want a massage now. I think it all stems from the cot he sleeps in at the hospital. I slept there last night and I barely fit - Ed's about 10 inches taller than me!

My sister was scrambling today to find a pet sitter for our animals that she is watching. She is bringing Sydney for a visit soon and we didn’t think about the zoo she was left with. She has been watching the guinea pig, bird, and our dog. It has been challenging to find a place for them all and finally tonight we got it all squared away. Thank you Bart for taking Stone. Hopefully he won’t run away.

Thanks for checking in on us.

Laurie

Friday, September 30, 2005 5:55 PM CDT

Day 22 - Here are her counts:

HGB 11.1* (11.4 - 15.5)
RBC 3.66* (3.80-5.50)
PLT 61* (150-400)
WBC 12 (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

We received great news today, Amanda’s DNA test confirmed that her cells are 100 percent Sydney’s. That means the transplant was a success. That doesn’t mean we are out of the woods, but it is just wonderful.

Amanda is still nauseated and they are thinking that her throat and stomach are healing in layers and the old skin is coming off. This old skin is not settling well in her stomach and so she is vomiting. Her blood pressure is now great and I expect that they will take her off one of the pills being used to lower her pressure soon. They have also switched her iv nausea medication to dissolving pill form now. She took 4 pills so far today and they all stayed down. Dr. Prasad told us that he is looking to send her to the apartment on Tuesday, I hope she is ready. I am typing this from the apartment and it is about 7 p.m. and Amanda is in the living room watching Animal Planet. It was a fight getting out the door again but she is doing well now. We are on a 4 hour pass today.

Thanks for checking in on us.

Laurie

Thursday, September 29, 2005 11:48 PM CDT

Day 21 - Here are her counts:

HGB 11.3* (11.4 - 15.5)
RBC 3.72* (3.80-5.50)
PLT 46* (150-400) she went up 6 on her own but got ½ a unit of platelets anyway
WBC 16.0* (3.8-12.7) she went down by 4, but it is expected
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Amanda woke up vomiting twice last night and today she vomited what looked like coffee grounds, but was actually blood. She vomited blood when she had throat and mouth sores, but this was a little different. Ed and I are confused about why she starting getting ill again. After she vomited the blood the doctor ordered a unit of platelets, but seeing as how the hospital was running dangerously low, she received ½ a unit. Platelets are always in high demand and I praise those people who donate platelets. After her bath and platelets she began feeling much better. Thursdays are bingo days on the unit and all the kids and parents like to participate. We had an unusually large crowd so it was lots of fun. Amanda stayed for bingo then stayed to visit with one of the many student volunteers. Amanda did not take her pass today, but she was up and moving and visiting all afternoon. Tomorrow we are having a cold front come through and it is going to get chilly in the evening. When Amanda heard the cold news she asked if she could go outside, so we made a date with the apartment balcony for 5:00 tomorrow night.

Good news on the eating front!!! Amanda ate today - first time in 21 days - she had two macaroni and cheese noodles and they stayed down. She was also able to drink water and lemonade today with her pills (4) all of which stayed down. Amanda’s TPN calories were reduced today so she should start feeling much more hungry in a few days. They are slowly changing over her iv drugs to pills, which are much easier to manage at the apartment. Things are rolling along fairly well and we are taking the potholes in stride (I think?).

Ed is feeling better today not nearly as miserable today. I think I forgot to mention he went to another discharge class this week on drawing labs and got checked off. If it was me I’d have to take about 10 classes and be held by the hand for a month!!! With lots of luck and good thoughts Amanda will be at the apartment next week and Ed can start putting his classes to use.

A few thanks - Sue thanks for the monkey tissues etc…., Leukemia Society Palm Beach Branch - Amanda received the book today and went absolutely bonkers over it she thinks it is the coolest book in the world! Amanda also received some really nice letters from a 5th grade class which she is now editing for errors - thanks she needs the academic practice. The students wrote some great letters that Amanda will enjoy reading for days.

On a very light note yesterday we went to a party on the floor and Amanda won a prize for a “pin the lead on Joseph game”. She won a game called 20 questions. Yes we have all played 20 questions, but this was not the 20 questions in the closet at my house. It is about the size of a tennis ball and is battery operated. Basically you think of something and the little ball asked 20 questions that you answer with a yes, no, sometimes, or unknown. Well the thing is possessed!!!!! It guesses right about 90f the time. Here is a list of a few memorable guesses made today: Platypus, toe, butterfly, peppermint, salt, tub, lemur, gecko… but here is the funniest. Ed and Amanda played and Amanda wanted it to guess Stone, our dog, who is a yellow lab; remember yellow. Anyway they decided to just go for a dog. In twenty questions the little ball spit out “Is it a yellow lab?”. NO KIDDING REALLY!!! We are having a blast with the game so if you run across one and have hours to burn like we do got for it I challenge you to beat the little ball.

Thanks for checking in on us.

Laurie

Wednesday, September 28, 2005 10:38 PM CDT

Day 20 - Here are her counts: I BROUGHT THE WRONG PRINTOUT HOME - SORRY NO COUNTS TONIGHT.

HGB (11.4 - 15.5)
RBC (3.80-5.50)
PLT (150-400) she received platelets
WBC (3.8-12.7)
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Amanda slept well last night. Ed on the other hand was sneezing all night. His allergies are really acting up and he had a miserable night and most of today. The staff says North Carolina is notorious for causing severe allergies in people who have never had them before. Kleenex has these great tissue that are supposed to kill 99f common viruses, they feel very soft and have small blue dots on them. Anyway I have stocked up on them for the apartment and when I got back tonight I found 3 empty boxes - poor Ed. To top it all off he has to wear a mask of the floor now and he is running through them as well. I bought some over the counter pills he is going to start tomorrow and hopefully they will work.

Getting back to Amanda’s health. The doctors continue to be pleased with her progress. They have stopped her G-CSF which up to now has helped to boost her White Blood Count. Today her WBC were over 20 so they will discontinue the G-CSF and watch her number. The doctor said it will fall and that is normal and if it goes to 5.0 they will start the G-CSF again. Another interesting thing that happened was her platelets went up all by themselves without any transfusion. Her number today was about 40. She still has absolutely no sign of GVHD and her sores on her site area have cleared nicely. One interesting thing was told to Ed by Dr. Martin today. Basically Amanda is physically doing good and he is pushing her to get off the floor everyday. The passes are like carrots to the kids and it is like removing a security blanket slowly. Amanda needs to start leaving willingly and eagerly. She has 4 things to accomplish and the staff has 1 thing to accomplish. The staff hopes to have their part done by Monday. If Amanda doesn’t have her parts done they may have to move her to 5100 floor which is an oncology floor. They need her bed for other kids that need transplants. We of course are not looking forward to moving to another room in the hospital if it comes to that. Unfortunately today was another struggle to leave the floor, Amanda did not want to leave the floor and it was not fun getting her out. Basically she is scared to leave and she gets herself worked up so much that she gets sick. Today she was retching so much it brought two nurses running in. Once they opened the door they knew what was happening and quietly left us alone. Amanda knows having a fit will not get sympathy from me and crying for no reason doesn’t get me mad. I simply pass her a bucket and her shoes and lead her out the door. Funny thing is once she is outside the unit she’s better and by the time we reach the truck she is back to herself. We had a nice outing in Durham we went to the famous Chapel after driving around looking for it for 30 minutes it was one of those “can’t see the forest through the trees”. The Chapel was beautiful and now that we know where it is next time we are going to park and explore the area.

Today there was a birthday on the floor for a boy who turned 10. He has been there for 80 days! I count my blessings daily.

Thanks for checking in on us.

Laurie

Tuesday, September 27, 2005 5:07 PM CDT

Day 19 - Here are her counts:

HGB 11.0* (11.4 - 15.5)
RBC 3.66* (3.80-5.50)
PLT 40* (150-400)
WBC 16.8* (3.8-12.7) this is great news!
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Due to the problem with Amanda’s pain medication she will need to stay in-patient for another week. They increased her medication and are planning on adding a medication to help and then decrease her amounts very slowly. Her nausea subsided a bit yesterday and she felt better. Amanda is taking her blood pressure medication by pill and is still vomiting after taking it, but they pill has stayed down for the last two days.

Amanda asked me to stay the night last night and I agreed with the knowledge it would be an early night for Amanda. She slept very well and only woke twice. She is still sleepy due to some of her medications, but we are managing to get things done.

We had a high note today. Amanda went to the apartment on a 2 hour pass again. This time things went very well. She felt good the entire time and is planning on asking for additional time tomorrow. Also when we were heading back to the unit she smelled pizza and said it smelled good!!! I asked if she wanted some, but she said no. The fluid situation is still the same it goes down pretty well but just ends up coming back up.

Thanks for checking in on us.

Laurie

Monday, September 26, 2005 7:18 AM CDT

Day 17 - Here are her counts:

HGB 11.7 (11.4 - 15.5)
RBC 3.90 (3.80-5.50)
PLT 35* (150-400)
WBC 17.0 (3.8-12.7) this is great news!
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!
ANC 2850 (day 14)
ANC 5912 (day 15)

I made biscuits and gravy for the parents today so I arrived early and spoke to her night nurse, who just so happens to be Amanda’s main nurse. She let me know that Amanda had a very restless night and she got sick a few times. They were also monitoring her blood pressure because it was up as well. They ended up giving Amanda methadone to help and they are hoping this passes in the next few days. She has to be weaned off her pain medication before we go to the apartment. At the rate we have been going we may not make it to the apartment until next week.

Yesterday was a pretty good day for Amanda she had similar complaints that are associated with her pain medication. She did not want to use her 2 hour pass, but did walk in the halls - yellow jumper and all. We looked like a bunch of bananas! Amanda’s chest is looking much better where her dressing is, but it will be a few more days of gauze bandages before she can have adhesive. When we finally go home they will pull her lines and replace them with a port. A port is just under the skin and it is much easier to manage. Also we will not have to worry about water because it is under the skin. Amanda’s white blood cells continue to climb and they will take her off G-CSF when they are about 20. The G-csf helps to create white blood cells.

Yesterday we had a visit with our friends in Thomasville and I had a thoroughly enjoyable time. Amanda said the boys kept talking about cars!!! Ed went to the apartment with Eric for a while and Amanda’s best buddy came for a visit. I have the apartment all ready for Amanda and I am excited about being there.

Today is going to be the big fluid push - wish me luck I think it will be a battle.

Thanks for checking in on us.

Laurie

Sunday, September 25, 2005 0:41 AM CDT

Day 16 - Here are her counts:

HGB 11.8 (11.4 - 15.5)
RBC 3.92 (3.80-5.50)
PLT 17* (150-400) she received platelets
WBC 10.6 (3.8-12.7) this is great news!
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!
ANC 2850 (day 14)
ANC 5912 (day 15)
ANC 5000 they are only going to check her ANC on Mondays now because it is so high.

When I arrived at the hospital Amanda was still sleeping and I assumed the night was long. Well I was wrong. The night was restful and Amanda was feeling better about her dressing. Soon after arriving the doctors came in to visit and had some good news for us. Dr. Martin, Davis and Parihk gave Amanda a 2 hour pass to go to the apartment today!!! In addition she is not required to wear the heavy duty masks that are not only expensive, but make breathing very annoying. She only has to wear regular surgical masks that are much less expensive for us when we go out-patient and also they are more comfortable for Amanda. It took a little while to coordinate her iv medications with the hospital break, but we managed to get all her meds in and her dressing changed in time. The main concern for the doctors was her pain management. We were told if she started being uncomfortable or in any pain we were to return immediately. We made it to the apartment without any problems and Amanda negotiated the stairs after an initial trip that landed her on her hands only - yes, she is still a bit clumsy. We had a surprise package waiting at the door from Diane Mathis and Amanda was excited to open it up. Diane picked out the greatest monkey presents for Amanda; she absolutely went ape for everything. Thank you very much Diane. After about an hour at the apartment Amanda got sick and was very frightened. She did have more dry blood come up and some sloughed off skin which is freaky for anyone not to mention a ten year old child who has been through the ringer. She said she wanted to go back to the hospital immediately, but after we did a clean up she got into an Animal Planet show and she was fine. After we returned to the hospital and told the nurse what happened the consensus was she may be having trouble being off her pain medication for an extended time. When she is released for a few hours tomorrow she will receive a loading dose of the fentynol before we leave. They are lowering her continuous dose of pain medication, but leaving her bolus alone for now. They will wean her off with the help of some other medications probably early next week.

There was more encouraging news today, the oral medication we were having so much trouble with has been stopped. Her liver is responding just fine and they like her numbers so the pill is not necessary. By Tuesday We hope that her throat has cleared enough for her to begin taking oral medications without any problem. She will need to take some before we can be released to the apartment. She did drink a few sips of water today and said her mouth felt dry.

Tomorrow our friends who live in Thomasville will be visiting. Sonia will take me to Raleigh and Eric is going to keep and eye on Amanda and Ed. I am hoping Amanda will keep the two of them in line. It is good that they will be able to leave the hospital and go for a ride or back to the apartment.

Thanks for checking in on us.

Laurie

Thursday, September 23, 2005 11:27 AM CDT

Day 15 - Here are her counts:

HGB 11.7 (11.4 - 15.5)
RBC 3.82(3.80-5.50)
PLT 22* (150-400)
WBC 7.2 (3.8-12.7) this is great news!
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2100 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!
ANC 2850 (day 14)
ANC 5912 (day 15)

Today has been a bit bizarre! Amanda was sleeping when I got to the hospital and kept it up until around 2 p.m. She was totally snoring, dead to the world,out. Her nurse and I could not figure it out, but we finally got her up and bathed. That is when it all started. I noticed her line site area had a lot of small blisters under the adhesive covering. She just had her dressing changed yesterday and her skin was very irritated, but there were no blisters or hives. We also had some other skin issues that needed the doctors attention. He came in to see her and prescribed some ointment for her skin and ordered her dressing changed again. The problem with the new dressing is Amanda is scared her line is going to come out because they are using gauze and coban only, no tape is used. Dr. Prasad wasn’t worried about anything and was again thrilled with her progress. I asked about GVHD and he said she has no signs of anything and that they will begin looking for graft vs. leukemia. So that was what happened until about 4 p.m. He also spoke to her about leaving the floor and walking to the Children’s Hospital, but she again said no thank you. He also spoke with her about trying to drink some fluids. She was off TNP for 6 hours today, but she did not try any liquid. I told her I wanted to see her at least trying water on Monday. Then things got interesting.

Remember she has one pill to take that we mix in gatoraid and she drinks from a syringe. She started vomiting again when she tried to take her medication. Ed said she vomited last night as well when she tried to take her medication. We handled that and Ed and I were in the kitchen when her nurse came in not looking very happy. She sat down and told us that Amanda got very upset because she is on contact isolation now - we didn’t know until then. Contact isolation means a culture they took is positive and she has a contagious bacteria that can harm not only her but others as well. When you are on CI the staff enters the room in these yellow gowns with gloves and all. Parents have to wear them anytime they leave the child’s room. Amanda is bright and when her nurse entered to speak to us she found Amanda who asked why she was wearing the gown. The nurse told her and it sent Amanda reeling. Amanda is very germ phobic and she freaked. So getting back to the kitchen…She gave us a quick minute letting us know Dr. Martin was on the way up to speak to us, but Amanda needed to be calmed down now. I knew there was going to be a problem as soon as I saw her … she was practically hyperventilating. We were in the room about 3 minutes and Dr. Martin showed up. Apparently a urine collection from last week grew a bacteria. He said she is colonized by this bug, they don’t consider it to be dangerous at this point to Amanda due to her counts. She is however contagious to other patients on the floor who are more compromised than she is now. They will continue to take specimens and culture them, but the culture for this bug takes about a week. Therefore chances are we’ll be released without a clean bill of health against the bug. If the bacteria - which is vancomycin resistant - shows in her blood they will treat it with some therapies. Now here is the kicker - She got the bug in the hospital, because they tested her for it before we went in-patient and she was clear. The doctor spent some time with Amanda and us explaining the details and left. Right after Amanda began vomiting again. She was so very upset that she just could not stop herself. We are now really counting the days until we get off the floor. Ed went home to bath and change then I’ll be leaving. CI leaves little room for leaving the room for much of anything. Things are going to be very difficult this next week.

Thanks for checking in on us.

Laurie

Wednesday, September 21, 2005 10:13 PM CDT

Day 13 - Here are her counts:

HGB 12.2 (11.4 - 15.5)
RBC 4.05 (3.80-5.50)
PLT 48* (150-400) she received platelets.
WBC 2.5 (3.8-12.7) this is great news!
ANC 952 (day 11)
ANC 1720 (day 12)
ANC 2000 (day 13) ENGRAFTED!!! THANK YOU SYDNEY!!!!

Well I didn't get a minutes sleep last night and headed over to the hospital around 6:30 a.m. I was just so very relieved to have one burden off our backs. Amanda was feeling fine all day no complaints. Dr. Martin stopped by to congratulate us and to let us know how great everything is looking for Amanda. He said he will start talking about releasing her to Durham next Friday. I again said I was content to stay put until it was time to leave for good. He pointed out that any infection we would get out-patient is easily fixed, but the hospital has some real bad bugs that are more hazardous. I truly never gave that much thought. Whenever we go he said it would be about another 30 days out-patient until we returned to Florida. I also asked when they were going to do DNA testing to confirm the new, fast cell growth is actually Sydney’s DNA. He assured us that he had no doubt the cells were Sydney’s. He said if they were Amanda’s they would not be multiplying so quickly. They will be doing the DNA test in about a week and it takes about 4 days for the results. He really was very pleased with Amanda’s progress and said it has a lot to do with the fact that her organs were in such good shape going into the transplant and they have been relatively unhurt through the chemotherapy.

Thanks for checking in on us. I'm exhausted and need to get my sleep.

Laurie

Tuesday, September 20, 2005 1:38 PM CDT

Day 12 - Here are her counts:

HGB 8.0* (11.4 - 15.5) She received a unit of whole blood
RBC 2.68* (3.80-5.50)
PLT 29* (150-400) she’ll probably receive platelets tonight.
WBC 2.0* (3.8-12.7) this is great news!
ANC 952 (day 11)
ANC 1720 (day 12) once she has 3 consecutive days of an ANC of 500 or greater they say she has engrafted. GROW CELLS GROW!!!!! THANK YOU SYDNEY!!!!

Just a quick update of her counts. We are all thrilled. She is receiving a "rescue drug" for her mouth and throat sores. The medication is to help with the effects of her methotrexate.

Thanks for checking in on us.

Laurie

Sunday, September 18, 2005 10:59 PM CDT

Day 10 - Here are her counts:

HGB 8.6 (11.4 - 15.5)
RBC 2.85* (3.80-5.50)
PLT 71* (150-400) after she received more platelets
WBC 0.5* (3.8-12.7) this is great news!
ANC 160 once she has 3 consecutive days of an ANC of 500 or greater they say she has engrafted. Therefore since there was a movement in her WBC I’ll start listing her ANC now.

It’s when you let your guard down in life that things happen. I guess we kind of let our guard down and I got a call at 6 a.m. this morning from Ed. Now let me tell you now I was wide awake as soon as the phone rang. Last night was a terrible night for both Amanda and Ed. She was in terrible pain that they were unable to control for hours. In addition to the pain, and probably because of the pain, she started vomiting again which is torture on her throat and mouth. From 11 p.m. to 3 p.m. the doctor and nurse were a constant presence in her room. She also began nose bleeds due to a number of things and she immediately received platelets even before the labs were pulled. So my call was to get to the hospital and relieve Ed ASAP which I did. I was there in about 20 minutes including showering! When I got there the nurse was in the room checking Amanda and she was still uncomfortable. During the night she was given 3 loading doses 15 minutes apart of her pain medication. They also tried to get her to sleep but her EKG machine was alarming all night and it took about an hour of investigations and tests which finally determined her heating pad was interfering with the EKG signal. On top of everything else her blood pressure was about 190/99 which freaked Ed out - of course. About an hour after I got there she finally fell to sleep and she was able to sleep for about 5 hours. When she woke up she was in a lot of pain again and they increased her pain medication. Finally around 3 p.m. she was back to something of a comfortable state and we were able to walk and play. The problem has been since the switch in her narcotic they are trying to get her dose just right. I hope they did it today. I left the hospital at 11 p.m. and she was getting sleepy and in bed for the night. Hopefully she will be able to get some rest.

Dr. Prasad is her attending doctor for the next two weeks and Amanda really likes him. He has a very playful bedside manner and you can tell he really enjoys children. With that said Amanda was very happy when he came in to see her today. He asked if I knew about her White Blood Count and I said yes I know they went up but I wasn’t getting excited yet. He said “you should be jumping for joy!” it is great that her number has gone up and he is thrilled. He prefaced this with she might go back down tomorrow and sometimes you see fluctuations and that is okay. In addition he gave us the good news that sometimes when your WBC begin going up it makes you feel bad. He also said TO Amanda that she will start feeling better in just a few days - now I say this because Amanda really likes him and will hang on those words… Amanda’s mouth is starting to look better as well. They tried to get her to do some oral pain relief that she could swallow that would numb her throat, but she didn’t want to try. She is being wonderful with her mouth care and I told her that was what is helping. He fever is going down as well just hovering around 101 and they are not least bit concerned about that.

Thanks for checking up on us. Start thinking good thoughts about Amanda’s cells growing. I’ll post her ANC daily. By the way ANC stands for Absolute Neutrophil Count which is an algorithm to determine your ability to fight off infection.

Laurie

Saturday, September 17, 2005 10:25 PM CDT

Day 9 - Here are her counts:

HGB 8.8 (11.4 - 15.5)
RBC 2.95* (3.80-5.50)
PLT 20* (150-400) she received more platelets
WBC 0.1* (3.8-12.7)

Today was another day that went pretty good for Amanda. Last night was very restless and she did not get much sleep. I decided when I arrived that she had to get up and get going earlier because she is getting her days and nights mixed up and I can’t let that happen. She was not happy with me, but I don’t have to make her happy with me that isn’t a mother’s job. After about 2 minutes of a tantrum which I all but ignored we had a heart to heart and she saw things my way. Amanda knows Ed and I have her best interest at heart and our decisions are final without debate. She got up and got going with an early bath and walking along with an hour of coloring and a movie. She tried her best to stay awake all day and asked me to keep poking her when she was falling asleep. Finally around 4 p.m. a nap was in order for an hour, because at 5 p.m. her “Best Buddy” was coming for a visit. Duke has volunteer hour requirement for its student and some students do their hours on the floor being paired with a patient who they visit about 4 hours a week. Amanda’s buddy is very nice and also plays piano. Tuesday she is coming and I hope to have a keyboard for them to play.

Amanda has a new doctor as Dr. Martin is on another rotation. The doctors do 2 week rotations which keeps them fresh. I cannot recall what this doctor’s name is, but Amanda really likes him. He reminds her of her dr. at home. It is important for patients to feel comfortable with their doctor. She has the same Fellow and she really likes that doctor - can’t remember his name either. I have a terribly hard time remembering names, it’s just awful, people should have name tags on for my convenience - ha ha… There was nothing new for the doctor to report. She has had another change in her antibiotic because her fever was higher today - hovering around 102 all day. They also took her off morphine and switched it to ??? Can’t remember that name either! Anyway she was having some icky side effects from her morphine and the drug they switched her to should work as well on the pain with less side effects. Getting back to the names of things I am assuming people really aren’t interested in all the drug names she is on so I don’t make a point of remembering. I know other patients with children that have cancer are probably the only people remotely interested. I may be wrong if so I can make up some very fancy sounding names?

The floor had some excitement today the Hendricks Motor Sports pit crew came by to visit. They are a sponsor of Duke Pediatrics Bone Marrow Unit and come once a year. They brought goodies for the kids and parents. They even brought Sydney a bag of toys which I am mailing down to her. They were really great with all the kids.

Thanks for checking up on us.

Laurie

Friday, September 16, 2005 11:18 PM CDT

Day 8 - Here are her counts:

HGB 9.0* (11.4 - 15.5)
RBC 2.98* (3.80-5.50)
PLT 44* (150-400)
WBC 0.1* (3.8-12.7)

Today went very well for Amanda. When I called over this morning she was actually awake and asked for her hats. I was at CVS filling a prescription and there was Halloween decorations all around me. I hope Amanda will be at the apartment for Halloween so she and I can decorate. I told her about the decorations and she wanted candy for the floor so I bought 7 big bags of candy and a cute plastic tray to put it in. Amanda loved opening the bags and mixing the candy in the tray then Ed, Amanda and I walked the floor and put out the candy. Amanda loves candy, she takes after me, but for now her only sugar high will come from her morphine and handing the candy out to the nurses.

Dr. Martin said again everything is going according to plan. He took her off the two antibiotic she was on and replaced it with one that is less harsh on her kidneys. The antibiotic she is on is a very broad spectrum one that is also better since they aren’t sure what the fever is from. She still is running a fever, but all of her cultures have been negative. They are generally associating the fevers with the chemo and the fact her counts are low. We aren’t treating the fevers until they get about 102 and so far they haven’t been there. Amanda’s organs have done very well so far and that is probably due to the fact they were very healthy going into all of her conditioning. Her mouth is a mess, but nothing is infected. She is much better now about her mouth care and I am proud of her. The mouth care consists of several steps, one of which is like a Listerine, just imaging using it on a mouth full of open, bleeding sores - my daughter is very brave.

Amanda’s teacher was able to come in for a bit today. There is no need opening a text book with her now due to the fact she is in a narcotic mental state; she won’t remember a thing. What her teacher does that is nice is to read to her from The Series of Unfortunate Events, we’re on number 5. Funny thing is we have read the same chapter to her 3 times already - she doesn’t remember a thing about it so we just start again… By about page 3 Amanda started drifting off and catching herself it was sooooo funny she was just literally nodding off. Finally she motioned to me that she was falling asleep and she didn’t want to get in trouble. Her teacher and I both said go ahead go to sleep and by the time the chapter was over she was snoring. When she woke up she said the chapter was going to have to be read again! Amanda will have plenty of time to play catch up with her school, believe me I will see to it personally. She already got ahead in math over the summer and we did a cool project in social studies already. Once she is feeling better she will have the teacher at Duke while in-patient and also while out-patient in the clinic.

Amanda received the coolest monkey in the mail today. Thank you Bonnie!!!! It is a 5 foot tall inflatable monkey holding a banana! It took Ed 30 minutes to fill it with air using a bike pump. The parents on the floor got the biggest laugh when Ed was filling it up in the playroom it made a lot of people smile. It is so large the only place it fits is in her bathtub. Amanda is going to play a trick on her doctor tomorrow with it then we are going to suspend it form the ceiling. Amanda likes to play tricks. In recovery after her central line surgery, when we were waiting for her room, she had a nurse wrap her arm in a fake cast. She then proceeded to have the nurses and each passing doctor write on it. To top it off the nurse made a sling so when we finally got released she looked like she broke her arm. Her doctor thought it was cute and Amanda loved the attention.

Thanks for checking up on us.

Laurie

Thursday, September 15, 2005 9:46 PM CDT

Day 7 - Here are her counts:

HGB 10.2 (11.4 - 15.5)
RBC 3.37 (3.80-5.50)
PLT 15* (150-400) Thank GOD she was given platelets!
WBC 0.1* (3.8-12.7)

The day ended better than it began. I called over to the hospital this morning and Ed said he wanted to come home. This is really unusual and he sounded exhausted so I guessed about the night. When I got to the floor I was stopped by Amanda’s nurse who asked if Ed told me what happened? Well he hadn’t . Apparently Amanda had a long and restless night. For some unknown reason her blood pressure sky rocketed and they had a hard time keeping her comfortable. In the past Amanda’s blood pressure, among other things, caused our stint in PICU so Ed gets a little worried when it goes through the roof especially if it happens while she is sleeping. She was also retaining fluids and other issues arose during the night. When I got to the hospital they had already given her two blood pressure meds and her blood pressure was something like 147/99 while she was asleep again! Not long after arriving she went to the bathroom they tried some other things and now it is hovering around 120/80 which is perfect.

Honestly the day was pretty uneventful. Pain management is essential now and I am very thankful that Duke is liberal with pain medication. Dr. Martin doubled her morphine which really made a huge difference in Amanda. I think Amanda has had more narcotics in her 10 years than the biggest hippy of the 60’s. I think when she is 16 and kids ask her to do drugs she’ll say “no thanks had my share already!

Dr. Martin is still happy with her progress and says that she is doing nothing out of the ordinary; not that any child should feel as &#* as Amanda or any of the other 15 kids on the floor. He says another 7 or so days of her feeling this bad and things should change for the better. One thing is sure the mouth sores are here in full force, her tongue looks like it has 3rd degree burns with a huge sore in the middle. She also sounds like she has laryngitis when she attempts to speak.

We have a hairy situation as well. He hair started falling out yesterday and today it is almost gone. She was bound and determined to get it all out today. Every waking moment she was pulling on it and putting it in a basin. She wants to save it for Grandma so I put it in a Ziploc (maybe I’ll mail some to Aunt Melissa?). I hope tonight will be more restful for Ed and Amanda.

Amanda received two great gifts from strangers today. Both were stuffed gorillas and Amanda was very pleased. Thank you!

Thanks for checking in on us.

Laurie

p.s. If anyone runs across 2 gallon size ziplocs we could really use them. Amanda's clothes, pj's everything must be washed daily and ziploced after drying for transporting back to the hospital. I am having a time cramming her pj's and panties sets in 1 gallon size and I have not been able to find the 2 gallon size in Durham.

Wednesday, September 14, 2005 9:31 PM CDT

Day 6 - Here are her counts:

HGB 10.7 (11.4 - 15.5)
HCT 0.32 (0.35-0.45)
RBC 3.54 (3.80-5.50)
PLT 47* (150-400) They will begin giving her platelets when her number is 20
WBC 0.1* (3.8-12.7)

Amanda started two antibiotics today. One for a urinary tract infection the other is a general antibiotic. She started the day and ended the day with a low fever about 101.5 all day. There was some concern about her mouth sores and as to whether or not she would receive her 3rd dose of methotrexate. The doctor took a look and decided to go ahead. She has what looks like small blood blisters on her body from low platelets and she will probably receive some around 2 a.m. when they pull labs.

Amanda announced that TODAY was her worse day so far. The worse part of today came twice when she tried to take her pill. In the morning she was able to take her pill, but in the afternoon she threw it up and along with the pill came blood. It was just awful! She was screaming in pain and crying and kept spitting and the blood made her very scared. I was very concerned and the nurses investigated. They said it was from the sores in her throat. She was put on a constant morphine line along with a bolus she can push. Later in the evening we tried the pill again. Ed was comforting her as the nurses and I were giving her towels for her throat and she tried and tried not to vomit. She no sooner said “I‘m sorry I need my bucket” then it was a scene from the exorcist she absolutely got sick everywhere…The problem now is the drug they are giving her is for her liver and she has to get it; the drug cannot be given through her line. Tomorrow they are going to try to figure out a way to get it down and keep it there. She was also given a suction to keep her saliva in check without swallowing it. It is like one you would see at the Dentist and Amanda actually likes using it, surprise.

With all the trials today we managed a bath and 4 laps and about 30 minutes in the playroom making a sign for dietary that read in huge letters: PLEASE LEAVE TRAYS OUT! Thank you. In all the confusion of the day she did only get ill twice when she tried to take her pill so that was good. We also watched an entire movie Fly Away Home. Tomorrow will be another day and hopefully I will only hear about 7 more “Today is my worst day yet”. Oh yes! I got lost on the way home again!!!! I better stick to roads I already know at night.

Thanks for checking in on us. I almost forgot she is finally loosing her hair - what a mess. I’m trying to convince her to simply let me shave it all off!

Laurie

I've added a link to a Duke webpage all about transplants if you are interested it is the second one below.

Tuesday, September 13, 2005 10:25 PM CDT

Day 5 Here are her counts:

HGB 11.6 (11.4 - 15.5)
HCT 0.34 (0.35-0.45)
RBC 3.83 (3.80-5.50)
PLT 84* (150-400) They will begin giving her platelets when her number is 20
WBC 0.1* (3.8-12.7)

Today she also had an ultrasound to look at her liver. The doctor had some concerns, but the ultrasound came back fine. He is however going to continue to monitor her liver functions and she is taking a pill to help. Yes I said pill which she took like a champ. She will take the pill a few times a day for a while. She also began something called IVIG which is pooled antibodies from blood donors as she has no line of defense against infection or viruses it is supposed to help. She will continue to receive the IVIG once a week for a while. The doctor said she is doing very well and so far there have been no surprises.

Amanda was hooked up to her PCA pump today. She is experiencing a lot of pain in her throat as the lining of her throat is sloughing off, this is causing a choking feeling.. It is funny how you find out about things that are bothering your kids. Today while I was bathing Amanda, she told me she was coughing last night and something came up in her throat, but didn’t come out. She was afraid she was choking and because it “didn’t come out” that it might hurt her. She was sincere and thoughtful when she told me this. Amanda is very trusting and we are extremely honest with her about her condition and the terrible junk she has to deal with trying to get better. The thing that bothered me was she was scared all night and day about the “choking”, but didn’t say anything until we were alone. When the doctor came in to see her I asked her to talk to him about the incident and he told her why she felt that way and reassured her that she was fine. I just hope if something happens again she will tell them immediately. We also talked about how she was feeling and she said today was the worse day she has had. She wanted to know if it was the last day she would feel had and I told her the truth, no. I told her she would feel worse before she got better but eventually she would feel herself again.

Today wasn’t all bad, Amanda did exercise and she received a package from a friend. The package really made her day and she sat up to do a craft that was included. She was feeling good enough to stay up and walk for about an hour and a half then she ask for some medication to get some rest. Yesterday she got a surprise all the way from The Australian Zoo. The zoo sent a great care package with autographed pictures, stickers, magazines the whole works. Amanda’s cousin in England arranged it by placing a phone call. Amanda was absolutely thrilled!

I went to school today. I was a good pupil taking notes and all! I attended a Discharge Planning Class along with the other parents on the floor. Basically the class was a do’s and don’t of post in-patient life, your daily clinic visits, preparing labs, when to call the doctors etc… It is, of course, a long way off for us but I like to be prepared. When the time gets closer for discharge we will have a individual class with the nurse and Ed will learn to work the iv- pumps she will got o the apartment with. For those of you that know me you know I cannot stand the sight of blood so the thought of drawing blood from her lines daily turns me white and weak at the knees. I am the organizer and the one that will have the supplies ready and labeled for Ed. Ed on the other hand will have no trouble with the lines, medications, labs or iv pumps. (We make a good match)

WOW this is long! Thanks for checking in on us.

Laurie

Monday, September 12, 2005 10:45 PM CDT

Day 4 Her counts are lower especially her WBC

HGB 12.5 (11.4-15.5)
HCT 0.36 (0.35-0.45)
RBC 4.07 (3.80-5.50)
PLT 128* (150-400)
WBC 0.3* (3.8-12.7)

Cyclosporine 514* (100-300) This is a drug given to help with GVH. They have been regulating it for a few days. This should come down soon.

Today was a fair day for Amanda. She slept a great deal and they kept her comfortable. She actually took a sip of water today which was surprising. She is trying to figure out ways not to do her walking, like for example, becoming nauseated before walking so now we simply bring a bucket with us…. She has done her 5 laps everyday but I have a strange feeling it is going to get harder to get her up. I told the doctor Ed and I will physically drag her from the bed before we let her not exercise. He said ok her lungs need exercise as well and it would be fine. (I like the man!) I know there will be days when it is impossible for her to get up and that is fine, but for the most part she HAS to exercise daily.

We took Sydney to see Sky High tonight and she really liked the movie. She also had a surprise in the mail, a package from her class. The kids in her class each wrote nice letters to Sydney which made her feel very special. She is bringing home her donor certificate to share with her class as well as her Duke Id with her “picture and all!” We are certainly going to miss her she is such a sweet girl.

Thanks for checking in on us.

Laurie

Sunday, September 11, 2005 8:54 PM CDT

Day 3 was a good day. Here are Amanda's counts:

HGB 12.5 (11.4-15.5)
HCT 0.36 (0.35-0.45)
RBC 4.06 (3.80-5.50)
PLT 174 (150-400)
WBC 1.6* (3.8-12.7)

We need everyone to start thinking good thoughts about Amanda engrafting Sydney’s cells. In other words, the doctors shut down and killed all of Amanda’s bone marrow. They then gave her Sydney’s cells and those cells make their way from the blood stream into Amanda’s marrow where they should start up her marrow factory. When Amanda’s factory starts working and making cells again it is called engrafting therefore we say GROW CELLS GROW!!!!!

Amanda had a good day today. Around 1:00 she got showered and changed she was up and playing and walking until 8 p.m. She was ill a few times but nothing to speak of not anything like yesterday. Amanda and Sydney made a few crafts together played Polly-pockets together and then watched the Garfield movie. Amanda is certainly going to miss Sydney when she goes and so will Ed and I.

Dr. Martin saw Amanda and is still pleased with her progress. Her kidneys and liver are great and that is always a good sign. Amanda has a good deal of thrush in her mouth and some signs of the beginning of mouth sores. Dr. Martin asked if we wanted her PCU (morphine pump) hooked up for her to regulate the amount of morphine she needs herself. We told him to hold off as she is doing good so far just asking when she needs pain medication.

Ed, Sydney and I had a great surprise for dinner Grandma made a ham and all the fixings and around 5 p.m. relieved us to come back to apartment for a family style dinner. It was great and Sydney even had a small birthday cake. We ate and watched a movie then finished a puzzle we have been working on. Tomorrow Ed and I are planning on taking Sydney to another movie the Tuesday she goes back home.

Thanks for checking in on us.

Saturday, September 10, 2005 9:14 PM CDT

Day 2 (sorry I am at the apartment and I don’t have her counts with me)

I only know everything in in normal ranges except her WBC.

Amanda was feeling so so today. She was definitely vomiting a great deal more today and she finally had a bowel movement. Ed and I spent about an hour tag teaming getting her cleaned the room cleaned, the sheets cleaned the bathroom cleaned the shower cleaned etc… And when we thought it was over she got sick again. Oh well there is never a dull moment. Because she was not feeling well they tried to keep her asleep for most of the day. She walked one lap with Ed and made a picture frame in the playroom for a little bit with me. Really and truly on days like today the best thing for her is to stay asleep. Grandma and Aunt Melissa relieved Ed and & around 3:30 and we spent the evening with Sydney going to the movies and eating dinner. It was nice to have special time with Sydney.

Dr. Martin continues to be happy with Amanda’s progress. He says her counts will bottom out and hopefully rise again in less than a week. That means that she will not be open for infections for very long.

Sydney is feeling much better and is acting normal now. Tonight we started her birthday invitations. Grandma is anxious about there being rain on her party and having to entertain the kids inside. We are brainstorming ideas in case that happens. We did have a celebration at the hospital for Sydney . Amanda chose some gifts before she went in-patient and was happy Sydney liked them. Melissa goes home tomorrow and Amanda, Ed and I will miss her.

I finally got my mail yesterday after waiting for 3 weeks! Thank you for the cards, Amanda was thrilled to have so many to open. We have been taping them to the wall behind her bed.

Thanks for checking in on us. I will try to have a new 3rd photo on the photo album soon.

Laurie

Friday, September 9, 2005 7:27 PM CDT

Day 1 counts. Yes they are a bit higher, but that is because she basically got two whole units of bloods from Sydney. I expect the numbers to start to fall again soon:

HGB 11.3 (11.4-15.5)
HCT 0.33 (0.35-0.45)
RBC 3.71 (3.80-5.50)
PLT 262 (150-400)
WBC 4.1 (3.8-12.7)

Amanda has done remarkably well today. As usual the morning was difficult, but by 1:00 she was feeling better. Her teacher came and they read then she walked and did arts & crafts. She took her daily bath and got her hair washed. She hasn’t begun loosing her hair, but that will come soon. Her mouth care is a bother, because she tends to get sick from doing it, but it is an essential part of her treatment. She has no sores yet, but she got a drug called methotrexate today which is well known for causing sores. It is about 8:00 now and she is still feeling good and watching a terribly inappropriate movie Rat Race which she absolutely loves. I told her I was going to try and find Cannonball Run which is very similar. The doctor is thrilled with Amanda’s progress so far, but continues to remind us it will get rougher. Her transfusion was absolutely perfect she didn’t even get a fever.

Poor Sydney really had the worse end of the stick with the transplant. When she woke from her nap yesterday her face was completely swollen, her eyes were slits and her lips looked twice as big as normal. Apparently she had some type of reaction to the blood she received. Last night was very hard on her even with her codeine Ed carried her everywhere. I forgot to mention yesterday that she lost her front baby tooth when they inabated her. We were not too surprised because the tooth was a bit loose. The anesthesiologist said when they placed her breathing tube the tooth got very loose so he had to pull it out. The good thing was the Tooth Fairy visited and gave her $10.00! Really and truly that tooth is worth Amanda’s life, which is priceless.

Thank you for checking up on us and for all the e-mails and guestbook entries.

Laurie

Thursday, September 8, 2005 10:14 AM CDT

YEAH it is TRANSPLANT DAY!!!! Sydney did a great job for Amanda. She was given versed to relax her before they took her to surgery. She was so funny, at first she just started to giggle and look around the room. Pretty soon she was a laugh riot and you couldn’t understand a thing she was saying. Ed stayed with Amanda and I went with Sydney to the surgery room where they used gas to put her to sleep then I left. It took about an hour to complete the surgery and they were able to harvest 750ml, which is a HUGE amount for Sydney. Because they took so much she did receive a unit transfusion. Ed and I both were in recovery with Sydney and she took some time to come around. She also got ill when she sat up so she received zofran. All of this meant that we missed Amanda being hooked up to the harvest. Because they were a perfect match, blood type and all, the doctors did not have to “wash” the harvest and they wanted to hang it as soon as possible. Grandma and Aunt Melissa were there and they took pictures. Sydney and Amanda are now both sleeping soundly and Amanda has about 2 more hours left to completely infuse Sydney’s blood. Sydney will have a check up tomorrow with the doctor and she will get her iron supplement for about another 2 months.

I am really excited to be at this point, but Ed points out not to get too excited unit we are home. Amanda did start morphine today for something brewing in her throat. They are not sure if there are sores starting or if the pain she is having may be from her constant vomiting yesterday. Her mouth looks clear and that is very good.

Thanks for checking up on us.

Laurie

Wednesday, September 7, 2005 12:35 AM CDT

Amanda isn't feeling well and isn't eating now. They will begin TPN (nutrition through her line) tomorrow. For now they are keeping her asleep and comfortable as possible.

Sydney and Grandma arrived yesterday and Amanda was thrilled. My sister, Melissa, comes in tonight and will be here for Amanda's transplant. Sydney had her check up today and they drew blood. She was very frightened, but did not move while they took her blood. She isn't scared about tomorrow, her surgeon met and spoke with her today. They will put her to sleep with gas so she won't feel the iv.

Amanda's counts are on the way down:

HGB 9.5 (11.4 - 15.5)
HCT 0.28 (0.35 - 0.45)
RBC 3.09 (3.8 - 5.50)
PLT 294 (150 - 400)
WBC 4.9 (3.8 - 12.7)

Thanks for checking in on us.

Laurie

Monday, September 5, 2005 9:55 AM CDT

Amanda had started not feeling well. Her new chemotherapy Melphlan is knocking her for a loop. They have been premedicating her with benadryl and zofran and also giving phenegran (sp?) so she has been very tired. She did manage to eat in the afternoon yesterday. The chemo is given once a day in the a.m. and by around 3 p.m. she is feeling a little better. Her counts are slowly going down, but I am told they will take a dramatic drop very soon:

HGB 10.8* (11.4-15.5)
RBC 3.52* (3.80-5.50)
PLT 330 (150-400)
WBC 7.3* (3.8-12.7)

Sydney arrives tomorrow and I am anxious to see her. We have planned a little pre-party for her birthday. Amanda has made her posters and a card and is very excited she is coming. Sydney will have an appointment on Wednesday to draw more blood and check her for surgery Thursday. Thursday is the BIG day!!! There is a boy on the floor who also received a matched sibling transplant and is going home Wednesday 3 weeks after transplant. He had very few problems and is a ball of energy in the hall. I pray Amanda will breeze through like he has.

Thanks for chekcing in on us. I brought a camera today and plan to take some pictures that I'll post soon on Amanda's photo album.

Laurie

p.s. caringbridge is trying to fix my address link for those of you who have asked for our address. In the meantime I have added it to the paragraph under her homepage picture above.

Saturday, September 3, 2005 10:18 AM CDT

Amanda is beginning to feel bad today. She has not started vomiting, but she feels sick to her stomach. Her counts are still not very low:

Day -4 (4 days until transplant)
Amanda's # Normal Ranges
HGB 11.2* (11.4 - 15.2)
RBC 3.61* (3.89 - 5.50)
PLT 329 (150 - 400)
WBC 9.1 (3.8 - 12.7)

The doctor lowered her chemo back to the original dose yesterday. SHe has 2 more doses today and tomorrow she starts another chemo for 3 days. She is still eating very well and hopefully her mouth sores will be minimal and she continues to eat. (not likely)

Ed is not going back to the apartment. She really does not like to leave at all so he is staying here. I am sleeping at the apartment at night and running the errands.

Thanks for checking in on us.

Laurie

Friday, September 2, 2005 9:29 AM CDT

Amanda is still feeling fine. They increased her chemotherapy drug so the nurses were busy again with blood draws all night. So far she has had no significant side effects or illness. The doctors think those things will start next week for now her counts are low normal ranges slowly going down.

Some things we are thankful for are the fact that Sydney and Amanda are perfect matches, blood and all and the fact that they are "clean". That means they have not been exposed to many of the viruses that come back and cause trouble after trnasplant. They are both CMV negative which is great.

Ed and I are doing just fine as well. I think as long as Amanda continues to do well we'll be fine. It feels almost normal again to be in the hospital mode.

Thanks for checking in on us.

Laurie

Thursday, September 1, 2005 11:10 PM CDT

This connection at the apartment is aweful. I just did a huge update and it expired before posting. I'll update thoroughly tomorrow while I'm at the hospital.

FRUSTRATED!

p.s. Amanda's mailing address is under her picture. For some unknown reason it isn't showing up below all the time.

Thursday, September 1, 2005 7:40 AM CDT

GREAT I just updated and the page expired. Here is the short story -

Tuesday night was sleepless due to many blood draws and getting her all ready for her chemo that started at 4 a.m.

She is feeling fine, but still sore fromt eh surgery.

Her counts are still all in the normal range.

She starts school today and likes her teacher up here.

I'll do a better update this afternoon I have to run now and relieve Ed.

Laurie

Tuesday, August 30, 2005 8:18 PM CDT

WOW what a LONG first day. The phone rang early this morning. It was Duke asking if we would bring Amanda in early because they were ready for her. I should have said no, because the surgeon was ready, but her room was not. She stayed in recovery until 6 p.m. and her proceedure to insert the lines was done by 10. The problem was there was a child waiting to be discharged in her room. There are no room just waiting for kids on the BMT unit, so we had to wait for discharge then cleanup.

Amanda's procedures went well, except they could not get an IV start and decided to give gas to get her asleep then place the IV. She was in a lot of pain after the surgery and wanted pain medication often for several hours. I think the area will be very tender for a few days. She doesn't seem to have any problems from the IT Meds (thank goodness) and tomorrow they start to pound her with other IV chemo. The Chemo she gets starting tomorow has a risk of seizures so they started dilantan this evening. Chances are she won't feel really crappy for about 5 or 6 days then things get interesting.

Thank you Sue for the card and stickers we got them today and Amanda was thrilled. She decorated a door sign with the stickers.

Thanks for checking in on us.

Laurie

Sunday, August 28, 2005 3:56 PM CDT

Sorry it has been almost a week since I've updated. Amanda's second kidney function test came out perfect. Dr. Martin thinks there was a problem with her IV the first time. We finished all of our pre-admit appointments Thursday and then headed over to Thomasville. We have been enjoying visiting our friends and sight seeing. Amanda has been horse back riding and tagging along. Yesterday she met a few neighborhood kids and today she played with them for a while. We are planning on heading back to Durham, which is about an hour away, tomorrow afternoon. We still need to get packed for the hospital and take care of a few loose ends.

Ed & I are planning on decorating her room while she is in surgery Tuesday. We went to the local party store and found a good bit of monkey decorations. Amanda's grandma made her 8 pair of button down PJ's and they are double washed and bagged for the hospital.

Tuesdays surgery will consist of the doctors placing her lines (3) and she will receive IT meds, but will not receive any radiation. She has never received IT meds, but the doctors said there should be no long term side effects from the one dose. With her form of AML they don't suspect the cancer can cross to the brain, but because hers isn't playing by the rules they are giving her the IT meds. Certainly the IT meds are the lesser evil when compared to total body raditaion for 5 days.

One bit of good news we received on Thursday was her cytogentic tests came back negative. Basically the chromosome 15 & 17 mutation that was present the first time is not this time. That means more than likely this relapse was caused by a rouge cancer cell that was not killed the first time. The alternative would have been a mutation in her body again. Maybe if she would have received more chemo the first time this would not have happened? We don't know, but she was on one arm of her protocal which recently closed. The results and comparisions of the two legs should be available in a few years. Her protocal was an adult/child protocal so the date is large and needs to be broken down. I am very curious to see it when it is available.

Thanks for checking in.

Laurie

Monday, August 22, 2005 8:33 PM CDT

I was awoke this morning by a phone call from Duke about Amanda's kidney function test results. The number they were looking for was around 100, but her number was 17! So we are doing another test and hopefully there isn't a problem. The rest of her tests have been acceptable. We also met with Jayne Cash today and toured the unit. Really it is much smaller than I thought. Basically it is L shaped with 16 rooms. The hall is very narrow so there isn't much room ro roam. Each room as a vast number of gagets and monitors, much like ICU. The floor is very clean and they are very particular about germs (thank goodness). Amanda became very nervous on the floor. She has been great through all of this, but the closer she gets the more apprehensive she becomes and who can blame her. She asked how sick she'll be today. I asked her if she remembered how she was before on chemo and she said she did a little. We are going to go back tomorrow to finish our conversation about drugs with Ms. Cash and she'll have an opportunity to ask specific questions to her as well.

Oh yes, it turns out not only are the girls a perfect match, but they also share the same blood type O pos. Unfortunately, Ed and I are not O pos so Sydney will have to get her transfusion blood from the Red Cross.

We have been busy, yesterday we went to the Science Museum and it was wonderful. We spent about 3 hours there and did not see everything. Today we spent some time in the gardens at Duke; they are beautiful. Wednesday we have an appointment to tour the primate center and Amanda is very excited. We are trying to jam as much extra activities as possible into our pre-transplant days.

Thanks for checking in on us. Amanda loves to receive mail so... if you'd like her address is below. She also loves monkeys so if you see a monkey card send it her way...

Friday, August 19, 2005 6:07 PM CDT

Yeah we made it! The drive up was uneventful and only about 12 hours. Yesterday and today our days were filled with several appointments. The most memorable was meeting Dr. Martin who was nothing but positive. The item I am focused on is the fact that Duke University Medical Center, which does about 100 transplants a year has seen only 4 APL patients (oh yes, we're #4)! They are basically giving Amanda a AML protocal from here on out. He believes with her match and the numbers he is seeing and her general good health that she will do just fine.

Sydney has been through a lot these last few days including 13 tubes of blood drawn. She met with a child life specialist who really made her feel better about the entire surgery. There are amazing doctors, nurses and other staff members here.

Ed and I are very pleased with our apartment. They really did a lot to make it very clean including refurnishing everything. We were up to our eyes in plastic the first hour. The apartment also offers free shuttles to and from the hospital. I am hoping everything works out and we do not have to move from The Forest.

Tomorrow we are off to visit friends and see our baby horse they are watching. Amanda and Sydney are excited.

Thanks for checking in on us.

See below for our address.
Laurie

Monday, August 15, 2005 9:34 PM CDT

I have tried three times to update Amanda's web page today, yuck. Sometimes I am really computer challenged....

Amanda finished her last arsenic and started another antibiotic for yet another sinus infection. She is feeling good and packing for the trip. I on the other hand am a basketcase and running around trying to finish everything. Tomorrow she will have a biopsy and they will take out her pic line. Ed will take her to the hospital so I can do some last minute things. I am so glad my in-laws are here to finish up things while we are gone.

Thanks for checking in on our family.

Laurie

Wednesday, August 10, 2005 8:53 PM CDT

Tomorrow Amanda starts her 5th round of arsenic chemo. All and all it has been uneventful. She will have a biopsy on Tuesday and we'll leave for Duke on Wednesday. We are just about ready just a few odds and ends.

We got some rather bad news today. I was under the impression that NCCS was going to help take care of lodging for us in N.C. I was wrong. Apparently they will take care of lodging while Amanda is on an out-patient basis. Thereafter while she in-patient (3 - 6 months) we'll be responsible for the $2,500 a month rent!!! The POST was able to help us the first month and we have not figure anything else out yet. My friend in N.C. said we are welcome to stay with her, but she in an hour away. If we go that route we'll split our time at the hospital two days on then two days off. It turns out they will only allow one parent at a time in the room anyway.... Our little family is an oddity mostly just moms accompany children which is extremely stressful for them as you can't leave your child at any time. Ed and I will at least be able to take breaks and when it is essential for us both to be there we will.

Funny thing got a bill from Duke already $2,700 and we have not even set foot in the place or spoken to a Dr. POST thinks it was an error. I simply laughed.

Thanks for checking in. Expect some awesome pictures soon.

Laurie

Wednesday, August 3, 2005 11:07 AM CDT

It is sure nice having two days off from chemo a week. Amanda was feeling the effects of last weeks chemo on Monday. She is feeling better now thank goodness. She went Driftboat fishing yesterday and hooked a kingfish that got away. Yesterday we also had some great pictures taken of the girls and I cannot wait to get them and post them on the webpage. Today Amanda is going to get her hair cut. She hasn't begun loosing it yet, but when she does it is a mess of your hair is long. Imagine waking up to apile of hair on your pillow every morning. I think it will be less stressful if it short to begin with. SHe already has some hats to cover her head and she might get a wig this time.

Things are in full swing here trying to organize everything for the big trip. Tomorrow she will start her nueropsyciatric evaluation. IT may take a few days, but they need a cognitive baseline because she will be receiving full body radiation about 5 times at Duke. Amanda is very bright and I hope the damage done will be easy for her to overcome.

Thanks for checking in and thank you to all of you that have sent e-mails and cards.

Laurie

Friday, July 29, 2005 4:04 PM CDT

I know the picture is huge again. Caringbridge is going to fix it soon. I can never seem to fit them properly. Amanda is on week 3 of her arsenic regiment. She is really tolerating the treatment well. She is basically refusing to eat the cafeteria food. I don't blame her. We have been bringing food from home or buying from Olive Garden. I don't understand how the food can be sooo bad in a hospital. They can save your life, but don't touch their green beans!

I am nervous about getting everything done for the trip to N.C. The nurse from Duke called and left a message today that 8/18 looks good. I'll be speaking with her Monday to get all the juicy details.

Laurie

Sunday, July 24, 2005 6:59 PM CDT

Tomorrow is day 5 of 5 for Amanda's 2nd round of arsenic. She is tolerating the arsenic very well. The days are long though. We arrive around 10 to the hospital and get home around 4. Amanda's ANC is hovering around 500, but the doctors are not concerned.

She gets two days off between treatments (Tuesday and Wednesday). We are going to a mid -afternoon movie with her friends on Tuesday. It is hard trying to fit in fun without subjecting her to germs.

I will be calling Duke this week to ask questions about transportation of Sydney for donation. It is hard to plan and buy airline tickets for Syndey when we are not exactly sure when she will be needed. I am thinking we may want to just drive her up with us then my mom can fly up and bring her home. SO many questions and grey areas....

I am planning on going to school on Wednesday to wrap up loose ends and get Amanda's text books. Amanda's old hospital homebound teacher is glad to teacher her again this year. She is a wonderful teacher who specializes in Math. She also lives about 3 miles from our house.

Thanks for checking up.

Thursday, July 21, 2005 8:41 AM CDT

I just updated this page and lost everything. Our new computer I fear is not working properly. I'll just do a quick update:

Amanda had a sinus infection and pnuemonia.
She may be released from the hospital after chemo today.
Her new off chemo days will be Tuesdays and Wednesdays.
Ed, Sydney, Amanda and I will have HLA testing today.

There was more, but I'll update later.

Laurie

Monday, July 18, 2005 1:50 PM CDT

Well Amanda was released from the hospital Friday and readmitted for high fever Saturday. We hoped she would be released today, but they are going to keep an eye on her. She has a sinus infection and is on medication for that, but her fever continues.

Sydney, Ed's sister - Annette and I went shopping for Sydney's school uniforms today. Ed had the van and I took his truck which decided to stop on Okeechobee Blvd! I think it is the alternator. His Dad brought a baterry out and we nursed the truck home. It is just one more adventure. Now Ed has to work on fixing the truck and everything else.

Thanks for checking in.

Laurie

Thursday, July 14, 2005 5:59 PM CDT

Amanda seems to be holding her own at the hospital. There have not been any adverse reactions to the chemo, only her electrolytes are a bit off. We have hopes that she can come home Sunday and continue her treatments on an out-patient basis. She has been enjoying visits from friends and family at the hospital. I am glad she is up for company.

Last night I spent the night at the hospital and it brought back all the terrible memories of the first time around. I feel like I am living a dream and that maybe someone will pinch me awake. On top of everything else Amanda's make-a-wish package arrived yesterday with her tickets, camera, shirts, hats, visors, agendas etc.... Thank God she was not home. We gave it to the POST to return to Georgia.

I am taking comfort in the fact the arsenic treatments these next 5 weeks should be relatively mild. She won't loose her hair or get infections and immune system problems until she gets the chemo at Duke. They started her on her mouth treatments again which were such a huge problem last time. I think they are getting her ready for doing them 3 times a day at Duke. We are also trying to bulk her up because she won't be able to eat for a while. They should put in a feeding tube to take care of nutrition, but that stinks as well.

I'll try to continue with regular updates.

Saturday, July 9, 2005 2:26 AM CDT

Amanda is at the hospital and will start her treatment to get her into remission again tomorrow. The treatment is a 5 week program of arsenic. She will spend the first week in the hospital to monitor how she accepts the medication. Thereafter it will be given on an out-patient basis. 5 days on with 2 days rest.

Once remission is obtained she will transfer to Duke for 6 days of intense chemo then transplant of her sister's marrow.

We are pleased with the treatment, especially the fact that the aresnic has minimal side effects. She will be able to be home and that means the world to us. Ed and I are splitting duty at the hospital so one of us is with Sydney and the other with Amanda. When we go to Duke Sydney will stay with my sister here in Florida.

Thanks for checking up.

Laurie

Thursday, June 30, 2005 1:42 PM CDT

I have some rather disturbing news. Amanda went in for a biopsy yeaterday and Dr. Gowda called today. I knew something was wrong when he said his name; it was like a bloody nightmare. The initial reports are showing 16% immature cells. Ed and I are hoping it has something to do with the pox she had last month. They have sent the bone marrow sample to New Mexico for further testing and we should know more next week. If she has in fact relapsed we will need to go to Duke in North Carolina for a transplant. Sydney is a 6 / 6 perfect match (even blood type I believe). We aren't telling her anything yet until the reports are back late next week. In fact we are still going to the Keys Saturday. Dr. Gowda said it would be fine for her to to, but we may have to come back a day or so early.

Say a prayer.

Laurie

Saturday, January 29, 2005 5:20 PM CST

Amanda is doing great. She goes into the doctor for a routine check up on the 15th and I am sure everything will be fine. Valentine's Day marks her 3 year diagnosis anniversary. It seems strange to me to think back to that first year. For a year it was like walking on egg shells and waiting for the floor to fall out from under your feet. Gradually things get back to normal, nightmares fade and now we are very normal. Amanda looks and feels great. The every two month check ups are more of an inconvenience than a worry.

I have often thought of cancelling this web page, but don't because I remember what it was like to search for other APL families. If our story can bring hope to any other family it is well worth keeping the site up. So I am sorry if I don't update very often now, but life is back to a breakneck pace....

Laurie

Saturday, December 25, 2004 8:51 PM CST

MERRY CHRISTMAS.

I hope everyone is having a great day. We will be visiting Ed's parents tomorrow and are looking forward to a rest. Amanda is great. She had her annual EKG and ECHO on Tuesday and everything looks great. Ed, Amanda and Sydney delivered goodies to the hospital from my Daisy Troop on Wednesday. One of Amanda's favorite nurses didn't recognize her at first and thought Syd was Amanda! I was working, but I would have loved to have been there for that. Amanda has certainly made up growth in the last 2 years. She is almost as tall as I am and she is only nine!

Gotta run luggage awaits!

Saturday, November 20, 2004 8:45 AM CST

WOW! it has been almost 2 months without an update, sorry. Amanda is feeling and looking just fine. Her doctors appointments have been simply routine. Last week everyone was sick in the house with strep or ear infections, but we're all better now. Amanda got new glasses. We bought her the transitions lenses and they have been great. I'm just mad we didn't do it two years ago.

Thanksgiving is fast approaching and we have so much to be thankful for including our childrens health, our home, our family and our soon to be NEW ROOF. Can you believe it we finally got a decent roofer to come out and give a reasonable estimate.

We will be traveling during the holidays to visit Ed's parents in Indiana and the girls are thrilled with the possibility of seeing snow.

Laurie

Friday, October 1, 2004 10:08 PM CDT

Things have settled down with the weather, thank goodness. Now if I could only get an insurance adjuster to pay us a visit. We received a form letter from them 3 weeks ago saying to expect a phone call in 6 weeks. Meanwhile we were hit with another stronger storm. Boy I wonder if I can send a similar letter in March when my $2,800.00 premium is due???? Those without insurance get checks from FEMA the rest of us have to wait for insurance companies that don't give a *&#t.

Just needed to vent, before my roof begins to.

Wednesday, September 8, 2004 12:08 AM CDT

We all survived hurricane Frances!!! We have some roof and yard damage, but everyone is safe. The girls slept through the worse part of the storm. The storm really lingered. Ususally they blow in and out within about 12 hours, but this one stayed for about 36 hours. Ed was very busy at the station but that is okay we expect that in emergencies.

I hope everyone else out there is fine as well.

Laurie

Monday, August 2, 2004 1:37 PM CDT

Amanda made it back from the Keys in one piece. They had a wonderful time boating.

Amanda is feeling and looking great. No complaints. She has a cavity that needs to be filled next month, but that is the only concern. She goes into the Dr. for a routine check up on the 10th and I am sure it will be fine.

I will try to post new pictures soon from our vacation.

Laurie

Sunday, July 18, 2004 8:51 PM CDT

We returned from Indiana on Tuesday and things are rolling along as usual. We had a wonderful trip and thoroughly enjoyed the break from the everyday. Ed's parents were great and we also had an opportunity to spend some time with friends in Alabama. Amanda and Sydney had a terrific time with their cousins.

Amanda is at ROCK camp this week. She left Saturnday and I am sure she is having a great time. She enjoys going anywhere whereas Sydney is a home-body.

The girls will be spending a few days with grandma and grandpa in the Keys at the end of the month. They enjoy boating and hopefully they will both learn to waterski this year.

The school year is fast approaching and the girls will be attending Discovery Key Elementary where I have accepted a second grade position. We are all very excited.

I'll try to post some new pictures from our vacation soon.

Laurie

Wednesday, June 23, 2004 3:02 PM CDT

I hope this entry finds everyone well. We are anxiously awaiting our vacation. We'll be gone for a few weeks and the girls are looking forward to seeing their cousins and grandparents. Amanda is doing very well and keeping me running all summer. We have been swimming almost everyday and the girls have a nice tan.

Amanda only has a dentist appointment next month then nothing until August. She'll see the eye doctor in September and I'll be getting her an appointment for the cardiologist in December.

Saturday, June 12, 2004 8:57 PM CDT

Amanda went in for a biopsy Thursday. For the most part it was better than the last time however things did not go all that smoothly. Our appointment was at 9:00 at the Doctors and we were 20 minutes late (it's my fault). So we were not seen until 10:30 ish. We managed to get all checked in at the hospital around 11:30. On our way up to the room we ran into a hospital employee who was nice enough to take us on a tour of the newly remodeled oncology wing. Let me first say what they did remodel looks great. A nice fresh coat of paint, new flooring which is very cool looking and some new cabinetry. However, where they didn't spend the money was the actual kids rooms!!! I would think the first place to remodel are the individual bathroom which are in bad shape, then the kids rooms then the playroom then the corridors then the kitchen then the nurses station. But they seemed to do things the opposite and that meant I guess they ran out of money for the first two on my list. When the donors come to look they will see a pretty view, but I expect they will be kept from the actual rooms.

Getting back to Amanda though it took 3 nurses 6 tries to find a vien. She is black and blue today! Ed has had it and plans to work on his IV skills at work and do it himself next time. He had to do it once before in a pinch and BOOM hit the first vien he tried. He figures he has 6 months to brush up on his skills. The Doctor said to call in a few days for the results. I let her know I don't like initiating bad news calls and to call me if there is a problem otherwise I'd see everything in August.

I hope everyone is enoying their hot summer.

Laurie

Wednesday, May 12, 2004 8:30 AM CDT

Amanda has been enjoying her summer so far. She spent this week at environmental camp and enjoyed fishing, bird watching, hiking and visiting animals. We will be going away in a few weeks to visit Ed's parents and we are all excited about that.

Amanda goes in for a biopsy next week and I am sure everything will be fine and we will have no surprises. I'll update again after we get the results of her biopsy.

Laurie

Wednesday, April 28, 2004 9:38 PM CDT

Amanda is very well. She has been busy this week with chorus. We attended the Spring concert and art show at her school last night and the kids were amazing. Amanda will be transfering to the new local school next year and it is sad to think we will be leaving a great group of teachers behind. Amanda has really enjoyed chorus this year and I can only hope that the new school will have a chorus for her to join. A little bragging for Amanda also, she received her FCAT scores and they were great level 4 in reading and math (out of a perfect 5). She missed 4 questions on the reading test and 11 on the math.

Amanda sees the eye doctor next week and I am sure everything will be perfect. She still is complaining of sinus pressure and if it keeps up I'll have to take her back to the doctor.

We are all counting down until the end of the school year. I finished my internship last week and I am working a few days a week at the office. I hope to have a job in the Fall! Amanda is looking forward to camp and Sydney is looking forward to her preschool graduation.

Laurie

Friday, April 16, 2004 8:28 PM CDT

Amanda is almost over her sinus infection completely. She has about a week more of antibiotics. The doctor put her on them for 3 weeks! She will go in for another check up next month and a biopsy in June. The doctor also mentioned another EKG in June, but I think she is mistaken she is suposed to have them yearly and she had one in December. Amanda's protocal is so foreign to the doctors sometime I think they speak before reading it or they just feel more comfortable with other protocals. I know at this point she should only see the doctor every 6 months but we are going about every 6 weeks or so.

Amanda is enjoying a fun filled weekend with her girl scout troop camping. She was really looking forward to the weekend because they are using tents instead of a cabin like last year. The weather should be terrific the entire time. Frankly I think she just wanted to avoid piano practice, lately it has been like pulling teeth to get her to play.

Please take a look at the photo album as there are new photos that are great and show how happy and healthy Amanda is. I think we are truly blessed and very, very lucky to be living a normal life with our 9 year old daughter.

Sunday, April 4, 2004 5:42 PM CDT

NEW PICTURES FROM DISNEY ON THE PHOTO ALBUM

Amanda has been fighting off a cold for about a week. I've been letting it run its course and she has handled the stuffy nose well. She has a few bruises on her legs that I noticed last week and the other day she said "mom I think my counts are down because I have some bruises". Thankfully, they look like normal everyday bruises and I am not alarmed. She could not tell me where she got them, but that is no surprise. It is funny what my 9 year old knows about how the body works as compared to other 9 year olds. We are all well and Amanda is especially well playing at a friends house today. Sydney and I have enjoyed each others company and she got to paint which is by far her favorite activity.

Friday, March 26, 2004 2:30 PM CST

We are back from a great trip to Disney World. Camping was a lot of fun and very interesting. The campsite was wonderful and the facilities at Disney are really top notch. The only problem was a cold front from out of nowhere caused some chilly evenings for us. I only packed 4 thin blankets so to keep warm we slept in our clothes and sweaters; Sydney used socks as mittens. We had a great time riding the fun rides and enjoyed the shows. Amanda and I spent time horseback riding and Sydney went on a pony ride. We also saw Howie Mandel at Downtown Disney sitting on a bench! I expect he was doing a show at Pleasure Island or something. I took a lot of pictures and will post them soon.

Tuesday, March 2, 2004 6:58 PM CST

Amanda is 9 today! It is hard to beleive. We had a nice diner at a new restaurant near by, Kocomos, and I highly recommend it.

There is a new HUGE picture on the photo album. I hope the person that fixed the front picture will have the same luck with this picture.

Amanda went to the doctors yesterday because she hasn't been feeling well. It turns out she just has a cold and some over the counter drugs have been helping. She goes back to Dr. G next week and I'll need to make an appointment for the eye doctor very soon.

Hope all is well with you.
Laurie

Thursday, February 26, 2004 6:30 PM CST

It seems my journals are now always that Amanda is great and that has not changed. We are very busy and Amanda's schedule of activities keeps us busy. Amanda will be 9 next month and I can't believe it. We have plans to go to Disney for a few days next month. We haven't been anywhere for a while so it will be a nice present/vacation. We are roughing it in our pop-up trailer, but really disney's campgrounds are wonderful. We are going to the hoop-de-do review one night and the campfire with characters another. We are actually going for 4 days but only spending 2 at the parks. There is sooo much to do at Fort Wilderness area that we'll be plenty busy.

Can you all believe the picture finally fits the page. Some wonderful person fixed it for me, Thanks!!!!

Friday, February 20, 2004