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!

September 16th, 2010

Hi everyone. Sorry I didn't post last week. It got away from me :o)

We had our normal clinic day today. Alex had to have a bone marrow biopsy and also a lumbar puncture for spinal chemotherapy. Apparently there are still leukemia cells in her spinal/brain fluid. We will find out the results of how many cells today. We are really hoping that those cells are all gone too.

Alex's counts were good today and everything went pretty smoothly. I tried to find out more information about the next block of treatment, but we didn't get too many answers today. The next block of treatment is count dependent. Her ANC (good white cells) have to be above 750... today her counts were at 1800 which is great... BUT, who knows how much they will dip after her treatment from today, and the delayed effect from last week's visit. The doctor said the next block is also controversial in how they proceed. Some doctors believe the entire block should be done inpatient... and some doctors don't think it's necessary. Apparently the next block is VERY intense. This makes me sad for Alex. Since her counts are good today, we are going to take advantage of the next week and try to do some really fun things.

At home we are still doing the twice a day I.V. fungal treatment. We just call it the fungal ball... since she is hooked up to this cool ball thing. We are really hoping for some insurance news on the dang pill that isn't covered... but the I.V. system is. Go figure... Still makes me furious to talk about all the health insurance B.S.

I want to thank ALL the many people who have sent cards and gifts. Your thoughts and prayers are sooooo appreciated around here!

I also want to thank the ex (sounds better than old) teachers that Alex has had through the years. Your visits are the most amazing thing! Nothing lights Alex up like a visit from one of her favorite teachers. I also want to thank my very special friend, Dave Koz for your continued support. Alex just loves seeing you... And she is looking forward to your dinner date :)

Thanks again to everyone that cares enough to read about this awful journey of ours... I will update tomorrow (I hope :o) with bone marrow and spinal cell counts. PLEASE send good vibes! We need all the bad cells gone!

September 7, 2010

Just a short update to let everyone know that the doctor called this morning with Alex's bone marrow results. There were NO leukemia cells! The doctor even used the word "fantastic." So, the one concern that the bone marrow director had is now history! She can officially move forward toward the bone marrow transplant. Alex has to go through a lot of chemotherapy for the next few months. It will be interesting to see what the next step is on the BMT.

I will update more on Thursday after Alex's day in clinic and the RTU again.

Thanks to everyone that sent out the ass kicking vibes! They worked!

Here is a photo of Alex and her dad... this was taken the first part of September.

September 3, 2010

Hi everyone...

It was a LONG day yesterday. Poor Alex had to go through many things before we had a 3 hour consult with the Bone Marrow director.

We started off in the clinic where Alex got her SUPER big syringe of Vincristine. We did get to talk with her regular doctor today, Dr. Lemons. He is always so informative and straightforward with everything. He is the director of the Oncology department up at Primary's and we are so lucky to have him as our primary physician. (some kids aren't so lucky with their docs). Anywho... he is making a call to someone that's the head of the board with our insurance company. Apparently he knows them (another great thing with having the head of oncology on your case). He appears to have a low tolerance for bullshit as well.

So... the examination went well... the first part of chemo went well... and then they sent us down to the RTU for Alex to have her lumbar puncture and her bone marrow biopsy. This bone marrow biopsy will tell a lot. They really would like to see that the chemo she has been getting has almost cleared out the leukemia cells. I know it's been working because her labs this week show her white blood cell count as horrible. Last week her white cell count was at 4900 (which is great... and with help of LOTS of steroids) and this week she only has 200 onboard (that is super bad). Her doctor did not feel like he needed to admit her, but he did send us home with more antibiotics for Alex to start taking just in case. She is now on 4 different precautionary antibiotics. The risk of infection is great... and dangerous in her condition. I am really not sure why it's more of a danger this time around, but it is.

After her visit to the RTU we had to go back upstairs to the oncology clinic to meet with the bone marrow team. This was what I had been dreading all day. I filled out a TON of paperwork on her history, family history, and current information. Then the transplant team dropped off the perfunctory booklets and paperwork. All of which to blow your mind but with cute little cartoon people on the front. Once all the paperwork was done the director of the Bone Marrow department came in to talk with us. I immediately liked him. (not always the case with me anymore) He was very informative and did not talk with Alex like the normal age group he is used to addressing up at the children's hospital. He talked to us about her medical history since diagnosis and explained why he thought that the bone marrow transplant (BMT) was his first choice of treatment. There were a few reasons why...

#1 - One of the big drugs used to treat leukemia is a peg asparaginase shot. This is what they have linked to Alex's stroke that was completely debilitating back in the beginning. That chemical has been taken off the table since the stroke. No one knows if this is one of the reasons why she has relapsed, but it could be. It is a key player to treating leukemia. So, without being able to use it again, he just feels that is one of the reasons why BMT would be more successful where chemotherapy alone would fail again.

#2 The most successful BMTs are done with cancer in full remission. If Alex were to choose to treat this relapse with chemotherapy alone (which she can) and she were to have another relapse, the chances of putting the cancer in remission for a third time would be very unlikely. It would also make having a BMT less successful or even possible. The body can only handle so much chemotherapy. Your body either becomes immune to the chemicals, or organs start getting so damaged by the effects that they shut down.

SO... after meeting with everyone, it's more clear what we need to do if Alex is going to have a chance at surviving this relapse. We need to move on to the BMT course of treatment. It's SO radical... it's completely foreign to me... and it's so incredibly scary. BUT... it sounds like it's about the only thing that could save Alex's life. It's an easy decision based on everything we heard yesterday. It's just not an easy course of treatment.

Here is what will happen:

Alex will continue on with the 3 blocks of chemotherapy treatment. Each block is 35 days or 5 weeks. She is day 16 into Block 1. These 3 blocks of treatment are designed to put the cancer into total remission to have the BMT successful. It also gives the BMT team time to find her perfect match. There are many factors to doing this... once they find the matches they have to coordinate with each and every one (they pick 5 or so) and they have to submit more blood test for local testing. After local matching is approved, they get with the best matches and schedule the bone marrow donation. This all takes time.

After block 3 is complete she will move into the BMT phase... this is a 5 to 6 week inpatient hospital stay in total isolation. I am not sure when everything takes place or if her counts recover at all for this?

There is WAY more information about the bone marrow grafting and when all that takes place, but I won't tell you about it here until I know more.

Here is the good news:

Alex has 3,008 PERFECT matches. She has plenty of 100% matches to choose from.

Here is the scary news:

This chemotherapy that she is doing now MUST put the cancer into remission for this BMT to take place.

The complications of a successful BMT are vast and can be long term.

Here is the weird news:

The donor may not have the same blood type as Alex. Once the BMT takes place her DNA will still be her, but her bone marrow and blood will be someone else. The director told her that if she wanted to turn to a life of crime after, it could be easier. She is weighing her choices now... College professor/International art thief. It's a hard choice.

All of this information that we received yesterday, although encouraging, was devastating to Alex. We are all trying to figure out how to cope with what lies ahead.

I will update the blog more this week when we find out her preliminary bone marrow results from yesterday's appointment.

For the locals (and non locals) wanting to visit:

This is EXTREMELY dangerous stuff we are working with here. If you have been exposed, or possibly exposed to any infection of any kind, PLEASE stay home! Even something as simple as strep throat for someone else is highly dangerous to Alex... even deadly. This is especially important to all those that have young children that are still in school or in daycare. There is just no way to tell if they have been exposed to anything... and then have exposed you (the parent). I know there are many that want to visit Alex, but everyone really needs to check themselves... a simple cold will send Alex to the hospital for a prolonged stay, and a set back to the BMT process... We really appreciate your thoughts and prayers. Please know that we would love to see everyone. It's just not possible with this treatment plan. And anyone who does come to our home for a visit (thought I would post this here so you aren't surprised) the first thing I will have you do is wash your hands. Also... make sure you are wearing CLEAN clothes! This is especially important for any of Alex's friends because they like to go down to Alex's room and sit on her bed. Everyone picks up many things on their clothing... please just be aware of where you have been, and how serious it is to Alex's life.

Thank you SOOOO much to everyone that has emailed me or sent text messages to me... or called. The support is just amazing and I appreciate each and every one of you!