Day +90: Gleevec Side Effects

Yesterday was Sarah's weekly visit to Dana-Farber. They told us her blood counts had dropped. In fact, they dropped enough that she needed a red blood cell transfusion. Susan and I were very disappointed and a little disheartened to hear she needed the transfusion. We new there was a pretty good likelihood that the Gleevec she will be taking for about 1 year as a relapse prophylactic could cause her blood counts to drop. We had hoped she would not experience this large of a blood count drop though.

Dr. Wang told Susan the drop could be due to the combination of Gleevec and Bactrim (pneumonia prophylactic). Sarah will come off the Bactrim soon and we'll know more regarding blood count performance then.

Sarah is very energetic now and since we've adjusted her anti-nausea med level and times she seems to be eating and feeling better. We are trying not to fret too much about the reduced blood counts, but it's keeping us on edge a little.

Please pray that Sarah will be able to tolerate the Gleevec and her blood counts will climb once she's off the Bactrim.

I'll see about posting a picture of Sarah with her new hair on the next update.
-Ben

Day +87: A New Playhouse

Sarah has been doing pretty good since the last update I posted, but since it's been almost 3 weeks since the last update, I thought folks should hear from us.

The Make-A-Wish foundation visited Sarah based on referral from one of Sarah's social workers at Boston Children's Hospital. The social worker is very kind and always stops in to say hello when we take Sarah in for her weekly visits. Make-A-Wish work with children that are terminally ill or have a life threatening illness (like Sarah). Susan and I and the other children all discussed possible wishes with Sarah for quite some before the visit by the foundation. In the end, Sarah wished for a pink playhouse for the yard. Cathy (at Make-A-Wish) said that Sarah's wish was super and wouldn't be a problem. I think they are giving her a bicycle too. The playhouse should be finished before snow sets in, so I expect to see them building it any day now. Sarah was pretty excited when the Make-A-Wish ladies showed up.

Sarah has been on her new medication to reduce relapse likelihood for about 2 weeks now. I think it has increased her nausea. She wakes up really queasy and vomits as well. A few days ago, she vomited 6 times in one day. Way too much. Sarah's main doctor at Dartmouth suggested we give her a moderate dose of Zofran (anti-nausea med) just before bed and a small dose when she wakes up in the morning. We've done this for two days and I think it's helping. We'll see how it goes over the next few days.

I don't think I mentioned on the last update that Sarah was going to have some blood testing done to check for cancer remission. The test (bcr-abl) for Sarah's leukemia type is very sensitive. It is intended to detect (at the molecular level) the chromosome abnormality associated with Sarah's type of leukemia. Well, the results came back negative meaning she is currently in remission at the molecular level with no detectable trace of her cancer. We were very grateful for that bit of news. Sarah will be tested every 3 months with the bcr-abl test.

The doctors really can't tell us that Sarah's cancer is gone for good. We are trying to accept that and frankly take each day as it is given. We love Sarah and the other children now as we did before Sarah's diagnosis, but something is different. I think something (or many things) have been added.

Please continue to pray that Sarah's cancer will not return and that her nausea will stop while she is taking her new medication (Gleevec).

-Ben