October 2nd

Day 10

Good morning everyone. Well, it's been a pretty uneventful morning so far. Alex finished up her last dose of ARC (the chemo) about 10am. She tolerated this round of treatment very well. Especially when considering that she has received SO much poison over the last few days. I think because of the violently ill night she had last week she decided to forgo food until the treatment is over. I hope she feels like eating something today.

We are officially stuck in the hospital room until her counts recover. Her white blood cell count has officially hit zero and she has no infection fighters onboard at all. Her platelets are still pretty low so I am not sure, but I think she will get more of these soon. I can't see those numbers climbing at all.

Also it appears they are worried about some issues going on in the bathroom and are now going to test for C-Diff. Clostridium difficile, often called C. difficile or "C. diff," is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. difficile most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications. This is another reason we are stuck in the room. This is contagious and even the doctors wear gloves and gowns to come in Alex's room until these tests come back. Which I have been told takes a couple of days.

Other than that we are just hanging out. I do believe the neupogen shots start tomorrow. I will update on just what that means when I know.

Thanks so much for all your thoughts and prayers. We do appreciate them!

October 1st - Day 9

Day 9

Good morning everyone!

Well, here we are again at the hospital. We checked in yesterday and were settled right into a room. It was a nice experience compared to last week when we moved around. We brought decorations to make the room as comfortable as possible for Alex for what will be her home for the next 3 weeks. It seems like such a long time.

Most of the hours leading up to the first dose of chemotherapy are about getting her correct weight and height. They check all her vitals and hook her up to a bolus of fluids (meaning they pump her full of fluids at a very fast rate). They want her kidneys and everything to start working quickly. They also draw blood labs out of both of her lumens that are coming out of her chest. They check these for blood counts, infections, and all types of things before they proceed with the chemotherapy.

Alex's blood counts yesterday weren't that great. Her ANC was only 200 (basically nothing). We left on Monday night with an ANC of 2000, so that is how much they have dropped in 3 days. Her red blood cells and her platelets were also low. I am pretty sure they will be doing a transfusion today on both of those. It's really a shame they cannot transfuse white blood cells :o(

Alex is getting 4350 mg of Cytarabine 4 times over the next two days. She will finish the 4th dose tomorrow morning about 9am. 24 hours after the last dose of chemotherapy they will begin Neupogen shots. This drug is used to promote white cell growth. It appears that they will be given at least once daily and will continue until her ANC reaches 1500 for 2 consecutive days. These shots can cause extreme bone pain as the bone marrow works to promote new cell growth. After reading about all of this today it appears that this is a side effect that not everyone experiences. So, let's hope this does not bother Alex. She has enough she is dealing with.

We are in room 4401 at Primary Children's Hospital. This is the dreaded room we had after Alex had her stroke almost 3 years ago. We are hoping to kick the bad voodo once and for all :o)

I am a little concerned about infections and all that. Alex got one bug last week with great blood counts and almost no interaction with people. What's going to happen during this 3 weeks while her counts are pretty much nothing? Uggg! Please send good blood vibes. We sure need them.

Thanks so much for taking the time to read about Alex. I know that I sure appreciate the support that I have here.

By the way... the cards are starting to come in and they really add to making this room personal. Thank you to everyone that are participating. Alex looks forward to the cards that arrive each day. Please keep them coming. Send them to:

Alex Thomas
1727 E Ramona Ave
Salt Lake City, UT 84108

September 29, 2010

I have had so many people write to me and ask "what can I do?" "what do you need?" Well, after some light reading last night I have some ideas. I read her bone marrow booklet from start to finish last night and one of the major topics that keep repeating is that when people offer to help, let them. This is hard for me. I never know what to tell people After reading the booklet last night, I can tell that I will REALLY need some help. Here are things in no specific order that will help. The clothing items will really help both of us as everything needs to be freshly laundered and taken to hospital in sealed bags. If she doesn't have more than a few of these items, I will be doing laundry constantly. Alex has to change to freshly laundered clothing at least once a day, sometimes more.

* Alex needs twin size sheets for her hospital bed. She loves flannel. They need to be for a thick mattress. These are strictly for her comfort. Also pillow cases. And nothing really has to match. Just something besides the nasty hospital stuff would be greatly appreciated. Her bedding needs to be changed once a day minimum. This is only to make her feel more at home. Something the booklet recommends. The hospital has plenty of these supplies but they aren't comfortable at all.

* new games... yatzee, scrabble, whatever... Things we have at home we cannot use, so? These will also be donated to the cancer floor once Alex is released to come home.

* Alex loves the socks at Bath and Body works that are that chenille fabric with the little nubbins on the bottom :o)

* Barnes and Noble gift cards so that she can buy books for her electric reader. She cannot bring her old books from home into the isolation room.

* Starbucks cards. She adores coffee and there is a Starbucks in the University Hospital that is connected to the Children's hospital.

* Corner Bakery gift cards - It's about the only place close to the hospital. Also appreciated are: Cafe Rio, California Pizza Kitchen, Z-Tejas, P.F. Changs, The Cheesecake Factory, Einsteins Bagels, Chilis, Olive Garden. We will not be able to spend much time at home for 6+ weeks once the transplant begins. We have at least 8 weeks left leading up to the transplant. Any food that I do not have to make at home will make things SO much easier that you have no idea!

* Leggings/sweats in XS and short length from A&E. Any color... http://www.ae.com/aerie/browse/product.jsp?catId=cat520029&productId=0494_2421

* These leggings from the GAP she LOVES! Size S http://www.gap.com/browse/product.do?cid=5953&vid=1&pid=763799

* chlorox wipes in the containers

* Baby wipes... all the chemicals give her sores almost like diaper rash. It's awful... and she needs the baby wipes for moisturizing during bathroom time. She is not partial to any kind.

* Dove - plain white body wash. She can no longer use bar soap.

* She loves the body creams at Bath and Body works. Her skin is so dry from all the chemicals that the body creams are about the only thing she likes. During the holidays her favorite scent is Vanilla Bean Noel. Other times it varies. I know she would get a lot of use out of Bath and Body work gift cards.

* Individual things of Nutella, peanut butter, and jams and jellies. She can no longer access a bottle of condiments. They have to be single servings. So, yummy jams and jellies would be great. The hospital only has the strawberry and grape type. She loves Nutella and they do not have this at the hospital. I know that I have seen these Nutella servings at the World Market/Cost Plus.

* Soft toothbrushes... These will need to be changed often as she will develop horrible mouth sores that are a big source of infection. She will need to clean her mouth often. She is so saddened that she will not be able to bring her electric tooth brush.

* Individual packages of Swedish Fish - she loves these. We can no longer get them in the large bag at the hospital.

* She loves Jone's Ju Ju Berry soda in a bottle

* X-Large zip lock bags... in the 2 gallon or greater size. These will be used to bring smaller items to the hospital. Things like a change of clothes, underwear, or other things that have been cleaned and can be brought in. I know they sell a 2.5 gallon size that would work excellent.

* iTunes gift cards so that she can buy movies or CDs right from her laptop. She won't be able to bring the discs in from Netflix while in isolation.

* One new DVD set that she is hoping to watch in isolation is the entire series of the Sopranos. So... a gift card to a place like Amazon or something like that where she can maybe put the money together and get this series. It's expensive so?

Things she cannot have as gifts:

No stuffed animals unless they can be washed and dried on HIGH heat for at least 15 minutes. She is not a stuffed animal lover, so this is no biggie :o)

No flowers or plants... Not even silk or dried ones. Strange but those are my instructions.

No balloons

Nothing that isn't prepackaged and sealed unless it can be easily sterilized.

No food can be sent to her, like the cookie bouquets. (She can't even have deli meats for the entire transplant process and then for 100+ days after completion.) I have to make any meats she has at home or they have to be prepackaged meats. YUCK!

I will try to update this list as she asks for anything special or we get more instructions. These things will help SO much. There are many different price ranges of supplies on here. Please know that ANY of these things will help us in ways that are hard to understand. Even to save me a trip of going to the store to get more ziplock bags is something that I am so grateful for. All of these things are to try and keep as many infections out of our lives and to help Alex make it through this procedure.

You can bring supplies or send them to our house at:

1727 East Ramona Ave.

Salt Lake City, Utah 84108

Or, if you live in Davis or Weber counties you can drop them at my mom's house at:

1889 North Alder

Layton, Utah 84041

Thanks to everyone!!!!

September 26, 2010

Hey everyone. Well, we are still stuck in the hospital. We aren't sure when we'll get to go home now. Alex was running a really high fever last night and they determined that all her blood cultures had come back with positive results for bacteria. This news is actually OK because usually Alex has a fever and they can't really tell where it's coming from. That is worse. So, it was nice to know that they did find out she had some type of bug... wish I knew where she got that... and that they were going to start her on a BIG antibiotic called Vancomycin. This will treat the type of bacteria that she has going on in her. BUT we aren't sure when it will take care of the fever, so we are here until it does. NOT great news for Alex as she was only going to get to be home for 5 days and now she is down to "maybe" 3 days. So we are really hoping to go home tomorrow. She will be back up to the hospital on Thursday (if we even get to leave) for a 3 week stay.

SO... in the interest of "laughter is the best medicine" (which we are big believers in) I am requesting from my readers your participation in bit of a contest... I would like to see who could can find and send Alex the funniest greeting card. And you can't really offend her... in fact the more the offensive the better :D Please send your cards to:

Alex Thomas
1727 E. Ramona Ave.
Salt Lake City, UT 84108

All cards WILL be posted on the walls of her room for this LONG stay of hers. They will be a great thing for visitors and nurses to read... laugh... something Alex can look forward to every day. So please!!! get your cards in the mail and let's see who can send the funniest one :D Store bought, hand made... whatever! As long as they are funny :o)

Thanks everyone. We appreciate the coooooool vibes coming our way. They haven't quite reached her yet, but I am sure they will.

September 25, 2010

Hi everyone.

Well, we are still up in the hospital. Alex was supposed to be released today but she has a fever and they didn't feel comfortable letting her go home today. It was disappointing since we were only going to get 5 days at home before we had to come back.

Alex finished her 4th dose of ARC cytarabine chemotherapy this morning about 8am. It was a brutal couple days for Alex. This was SO much medicine. I can't say that I am surprised that her body is running a fever. It's almost 9pm here and her temperature now is 103.5 Not a good thing. She is watching Dr. Strange Love and we are watching her. :o) They have drawn two sets of blood cultures throughout the day and are watching them for growth. So far everything is coming up negative to any bacteria so? Her counts are quite good today so it's a little surprising that this fever is spiking so high. Hoping it breaks in the night and she is good as new in the morning.

Please send nice little cooling vibes... I know you all can do it... you've done it before :o)

I will update as soon as we have more information. I am hoping to let you all know that we are home tomorrow.

You can also find more information on my Facebook page. Just "friend" me at "Stephanie Harris Burbank".

Have a good night everyone!

September 24, 2010

Hi everyone. SO, here is what's happened since Wednesday... quite a lot.

First of all we have gotten some great news on our fungal pill issue. The insurance has decided to cover the oral form of the medicine under the medical side and it will even be delivered to us. YAY! No more I.V. treatment for this medication.

Also on Wednesday afternoon we heard that Alex's counts were only 500 and did not think they would go ahead with the next series of treatments until they reached 750. Well, after the clinic talked with her Dr. he said NO, that he wanted to proceed as planned. We were told to check in on the 4th floor of the hospital on Thursday morning. Block 3 is about to begin... She just finished Block 1... Why these are out of order is because it used to be a study... Block #1, Block #2 and Block #3. The study is over and they determined that they had the most success with Block #1 first, then Block #3 and then finishing up with Block #2. Why they haven't renamed these? Who knows.

We arrived at the hospital as directed and were told they had Alex a room on the 3rd floor. That is basically the floor for kids with other issues that have them in the hospital... where the 4th floor is for immune compromised kids and the entire set-up is very special for the cancer kids. Being on the 3rd floor did not please me. First of all it's just not a great place for a child with no immune system to be. Kids are on the 3rd floor with all kinds of illnesses. It's not a good place for Alex. SO... I asked our admitting nurse if her doctor was aware of where she was?? She told me that he knew we were there at the hospital but she was sure he didn't know exactly what room. I told her to call and tell him where she was and if he really wanted her on the 3rd floor.... miraculously she was moved to the 4th floor within 20 minutes. YAY!

The doctor came into our room and spoke to us about what would happen over the next 48 hours. She is getting a chemotherapy called Cytarabine (ARC) and that it was an extremely high dose. If anyone remembers any of my previous entries where I gave this type of chemo at home? Well, her regular dose of this chemo was 75mg of Cytarabine and this one that she will receive in 4 doses is 4410 mg. So, almost 59 X the amount that she has had per dose in the past. This really stressed Alex out.

They hooked Alex up on large amounts of fluid. They want her to be going to the bathroom frequently so her kidneys are working all the time. A great thing for sure, but the poor kid is getting no rest. They also wanted to test her levels of everything in her blood and urine before getting started. The first dose of chemo started about 5:00pm yesterday and so far she has gotten 2 doses. It takes 3 hours for the full infusion to take place. She will get the same dose at 5:00 pm tonight and again tomorrow at 5:00am. Then she will go home until next Thursday. The doctor said that after she returns next Thursday it will be unlikely that she'll return home until this phase is over. The nurse said to get ready for a long boring hospital stay. No other chemo is administered during this time. It's all about getting her blood counts to recover. They do have some shot they can give her to stimulate cell growth, but the doctor hasn't really wanted to use these in the past. The shots seem to be part of this Block 3 protocol, so we'll see.

The doctors have just come in and said that Alex's red blood cells have just taken a dump, so she will be getting blood today. Which takes FOREVER! It's so nice they keep an eye on all this stuff.

Well, that's about it for the last few days. Alex has been reading books on her nook (that my awesome friend Kristy sent her) and watching DVDs. People have been writing me and wondering what they can do or get for Alex and it's so hard... I just tell most people that Barnes and Noble gift certificates are the best because she can shop right from her NOOK and get books... DVDs... She isn't a child that wants much more than books.

Thank you to everyone for all the support. You have NO idea what it means to me.

September 22nd, 2010

Just a short update for everyone...

The home health nurse stopped by this morning to take blood from Alex to see what her counts were. The counts came back at only 500 but after talking with her doctor we found out he wants to proceed as planned. SO... Alex will go inpatient tomorrow at 11:00 for 4 doses of high dose chemotherapy. She will receive one dose every 12 hours over 2 days. We are really hoping that she'll be discharged on Saturday. I am sure it will all depend on her counts. This same procedure will be repeated next Thursday as well. The admit coordinator tells us that it's unlikely she'll go right home next time. I guess this next chemical is really repressive to the bone marrow and it takes quite awhile for it to recover.

I will update with how things go over the next few days.

Please send good vibes! We sure need them!

Thanks everyone!