Waiting For The Trial

We brought Sarah home from the hospital yesterday afternoon. This time the decision to bring her home was a tough one. Sarah is still having fevers and sometimes at night her oxygen saturation's drop down to the high 80's. We are very concerned that she has an infection somewhere that the docs cannot find. Sarah has had numerous x-rays and CAT scans that have turned up nothing.

Ben and I waited until the last minute to tell her she was leaving the hospital just in case something happened and she had to stay. Before being discharged Sarah was beefed up with platelets, and a dose each of Ativan, and Benadryl for the ride home. Amazingly, she made it the whole way home without throwing up.

Arriving home from the hospital is always very busy and a little stressful. This time it was a little easier because we had separate cars. Ben stopped by the pharmacy while Sarah, Asa and I went ahead to the house. As soon as Ben got home we wrote up up Sarah's new med schedule and started with them.

Sarah is still sleeping with us at night so that we can keep a close watch on her. I wasn't sure we were going to get any sleep last night because Ben kept asking me to wake up and listen to Sarah breathe. We are only scheduled to wake up once (2 am) for meds. Though, last night went well.

The clinical trial looks like it is going to happen later rather than sooner; They won't be ready for Sarah until the middle of May. No one is sure Sarah will be able to wait that long. We are trusting God to work out these details. But still doing our share of worrying.

St. Judes is working with Sarah's Dartmouth Oncologists to manage her leukemia prior to her slot opening. Since Sarah's cancer is still responding to chemotherapy (but returning shortly after treatment), she'll be given more frequent smaller (less physically stressing) doses of chemo while her blast count is low. In contrast, the approach up until now has been to give her more intense chemo treatment and wait as long as possible to repeat. Hopefully, the new approach will prove effective and easier on her little body.

Sarah was in God's hands even before her diagnosis on May, 4 2008, but we feel it every minute of every day lately. We are grateful she is still with us and pray for God's mercy, strength, comfort and continued hope.

Please pray specifically for Sarah's fever and underlying issue to correct and the alternate chemotherapy treatment to prove effective for Sarah.

-Susan and Ben