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!