Thursday, May 22, 2008

Day 17 - Vaccinations

Ben asked me to write for him today since he's tired. Sarah had a hard day today. She just didn't feel good and didn't have any energy. This morning after breakfast she had a short crying spell and complained that her legs and throat hurt so Katie and I took turns cuddling up with her on the couch and that's pretty much where she stayed all day, except for meals. Guess that's the steroids. The steroids make her feel weird. While taking her potty this afternoon she told me she was scared and then she said, "Mama, I don't like to be scared." Poor thing! When she acts like this we just hold her, comfort her, and wait for it to pass, and it does after a few minutes. We don't ask any questions and try not to make a big deal out of it, although sometimes distraction with a book or a toy does work really well.

Tomorrow is going to be a long day. Sarah, Betsy, and John all need to go up to DHMC. Sarah is going to get another transfusion (this will be the fourth) and Betsy and John will be getting some vaccines. The theory behind the vaccines is that some immunity will be transferred to Sarah with the BMT and since we don't know which of them will be the donor they are both getting them. I hate the whole vaccine thing but don't really see any way around it. Betsy and John will also need to be "isolated" from Sarah for several weeks. We'll share more about that after our visit to the hospital Friday.

-Zephaniah 3:12-19

Wednesday, May 21, 2008

Day 16 - Bone Marrow Donor Found


This afternoon Sarah's doctors told Susan that two of our children are bone marrow matches for her bone marrow transplant. The two matching children (and the rest of us) were pretty excited to hear this very positive news.

Sarah has a very long way to go, but today we feel blessed. We feel like we were given a gift.
-Psalms 130:1-8
The image to the right is Sarah and her sister Katie taking a walk on the hospital grounds.

Tuesday, May 20, 2008

Day 15 - New Drug Added

We headed back to the hospital today for Sarah's 3rd round of chemotherapy. She recieved chemotherapy via a spinal tap and intravenously through her "picc" line. Some bone marrow was also sampled to evaluate the chemo treatment effectiveness. Sarah was anesthesized for these procedures so she felt absolutely no pain.

Bone Marrow Donor Update:
Sarah's doctor said the initial test results for one of our children being a bone marrow donor looked promising. The doctor said a "couple of them" looked hopeful. He stopped short of saying one was a match until the final test results come in over the next couple of days. Hopeful news...
I'll post the results of the childrens bone marrow match testing as soon as we hear more.

New Drug Added:
Another drug will be added to Sarah's daily regimen starting Friday (Day 18), "Imatinib" also known as "Gleevec". The drug is primarily intended for chronic myelogenous leukemia (CML), but it works for her specific subtype of leukemia too (PH+ALL). The drug was added since the leukemia cell count in her bone marrow has not sufficiently reduced (below 5% of diagnosed levels) with the current regimen. The goal is to get Sarah into remission in preperation for a bone marrow transplant.

In general, Sarah is doing pretty good at home. Still no "difficult" side effects from the chemo treatment and we are having no trouble finding plenty of things to be thankful for. While Susan and I are having high and low moments, we still love and have faith in the lord.
-1 Cor 13:12

Informative websites:
http://www.childrenshospital.org/az/Site759/mainpageS759P0.html
http://en.wikipedia.org/wiki/Imatinib