Intensification - Block 1

One of Sarah's doctors told me that her eye lid droop was caused by a chemo drug, Vincristine. He also said it would go away after being off the Vincristine for a little while. I was glad for this news and very grateful to God that she is doing so well.

Susan developed a stomach bug last night. Yes, with all the bell's and whistles. Must be tough when you're pregnant (4 weeks to go!). Susan was sleeping in Sarah's hospital room and I was sleeping at Davids House when she started vomiting. She called me @ 5:30am asking me to trade places with her. I knew this meant she was going home today and not going to be with Sarah on the first day of her new chemo treatment. Susan's father came to take her home around 2:00pm. Susan was with Sarah when the chemo started though.

Sarah seemed to take her first day of Intensification chemo pretty good. It's a little early to tell how the entire 5 consecutive day treatment will effect her. "Intensification" is the treatment period that follows the "Induction" treatment period. Sarah will likely only have one of these Intensification "blocks". Sometimes, and for a variety of reasons, more than one block is conducted. It's a little scary because we don't know how the chemo will effect her or to what degree. It could be really bad or no problem. You know which one we're praying for.

It's a little tough to tell how Sarah feels when she's at the hospital and especially when she's on medication. She doesn't talk or engage much so we kind of have to assume what she's feeling based on what we know about Sarah as her parents. However, she always cheers up when some of her siblings are around her. The children are a blessing in so many ways, but to see them be a blessing to each other is comforting.

I know that many of you pray for Sarah and our family often and I thank you for that.
-Psalm 71:20-22

Another Round of Chemotherapy

View from Sarah's hospital room window

Wow...
Things have changed since our visit to the hospital a few days ago. Sarah developed a fever of ~103.5F during the night Wednesday and we had to take her back to the hospital Thursday morning. Later that day the doctor recommended we pull Sarah’s next chemotherapy block in from next Wednesday and start the 6 days of chemo on Friday. We were a little disappointed that we were not going to spend the next week/weekend with Sarah at home, but agreed that proceeding as soon as possible was best. The longer Sarah has this strain of Leukemia, the more opportunity it has to mutate into a more resistant strain.

As it turned out, Sarah had a fever all day Friday, so we don't start chemo until Saturday afternoon. Susan and I worked out the schedule for next week regarding who would stay with Sarah at the hospital and who would be at home. Susan wants to be at the hospital the entire week. With Susan being due to deliver within 5 weeks and the other children’s needs, I’m not sure her staying the entire week would be best. We’ll talk about it a little more.

The doctors are starting to talk to us about “hard” dates for admitting Sarah at Boston Children’s Hospital. End of July/Beginning of August was what we heard today. We’ll probably visit the Boston team by end of next week. I’ll post more on that when we hear.

Susan and I are a little worried about the effects of the chemotherapy injected in Sarah’s spine. Maybe it’s our imagination, but she seems to be “not quite right” since her last spinal chemo treatment on Wednesday. Please pray she will not have any lasting effects from this treatment specifically.
-Romans 8:37-39

When it Rains it Pours

Sarah has been home with us since last Thursday (6 days). She is doing great and has enough energy to move around and play some with her brothers and sisters. She doesn't walk very well, more of a shuffle/hobble. She takes a small amount of Tylenol w/codeine for muscle and joint pain (it makes a huge difference). Hair is going fast, but some is hanging in there.

We visited the doctor's today to have her blood counts checked and discuss the next steps in her therapy. She did have some chemo treatment in her spine today (read spinal tap). The good news..., Her blood counts looked good. The bad news..., Since her blood counts look good she is ready for more chemotherapy. She goes back to thehospital for the chemo next Wednesday (6/18). Thankfully, she will spend this next week at home with her family. We are so excited about having her home (and in good spirits) with very little meds until next Wednesday (now that is a gift)!!

Sarah has to go through one and maybe two "blocks" of chemotherapy before she begins the bone marrow transplant phase. The doctor's tell us this is normal and expected and that things are still moving along in a positive way. The one block of chemotherapy we know she needs will be for 6 straight days. Sarah has to be in the hospital for observation the entire 6 days. The hospital stay is required since the drugs will be an entirely new set and she may respond badly. Something else new..., we will be giving Sarah daily injections of a growth factor at home starting on the sixth day to boost her blood cell recovery. The block ends 3 weeks later with a bone marrow biopsy to check her status and blood cell counts.

If the doctor's are pleased with her response to the first block, then we can move into the bone marrow transplant (BMT) phase. We're not looking forward to the BMT, but we do want to go into and out of the BMT phase as soon as possible.

So, it looks like another several weeks of uncertainty and "going with the flow". Did I mention that Susan is due to deliver baby #9 in 5 weeks? We better wrap up the naming process pretty quick.
-Song of Solomon 2:10-12

The upper right image is Sarah at the hospital today waiting to see the doctor.
The upper left image is Sarah resting after her spinal chemo treatment today.