Sunday, April 19, 2009

4-19-09: Uneasy at Home

Sarah has been home for one week. Last week was tough.

Sarah's meds are scheduled around the clock (4 hours) to keep her nausea and fever at bay, which translates into little sleep for us. We did start her on some steroids to help control the fever; Fever that was getting really high (104-105F) and making her uncomfortable. Additional antibiotics were added to Sarah's meds to address possible infection as the source for her continued fever. The antibiotics do not appear to be addressing the fever source even after being on it for 4 days.

Sarah had respiratory distress immediately following her chemotherapy several weeks ago. The doctors went through several narcotics to ease her effort breathing and respiratory rate. She came home on methadone and a fair amount of ativan to help her relax. She is able to breath comfortably, but is fairly lethargic. Just like the fever, the source for the respiratory distress is not clear.

Sarah's oncology team tells us that often these symptoms present themselves in this manner at end stage leukemia but the symptoms may be due to a few other causes. Sarah's primary oncologist calls our home every day to check on her status and discuss next steps.

Sarah had outpatient chemotherapy Friday and came home. Her WBC and blast count remains very low. Hopefully, the approach of giving lower dose chemo before her counts go up will work for Sarah. Her blood will be checked again on Monday.

No new word on the clinical trial date. The doctors are working hard towards getting her into the trial. We are still looking at mid-May as far as we know. And as long as Sarah can make it.

Susan's sister, Sandra, is here to help out. She is a big help and has managed get all the laundry washed up on top of having a little fun with the children. We are very thankful that she doesn't have a career and was free to come back.

Please keep Sarah in your prayers specifically regarding the source of her fever, respiratory distress and blast count.
-Susan and Ben


Anonymous said...

Dear Sarah I hope you get well soon and ill keep you in my prayers.My favrit things to do is read books and hang out with little kids like sarha. iwill rase money to the hospital for sarha.My Dad works with your dad. I wish good lucks and prayer to the family. From Stasia Turner

Anonymous said...

Hi friends, we want you to know that we are praying for all of you! Please give Sarah a hug for us and tell everyone we said hello.
The Marshalls

BrendaFlickingerKline said...

I received your call. I am sorry I was not in that day. Please feel free to call me again. My prayers are with you. Barb's sister, Brenda

Diane said...

Hi Susan,
This is a wonderful web site you made for Sarah. You are obviously a very special family. I was sorry not to be able to chat with you more during Jeremy's hospital stay but glad to have run into you at the pharmacy on tuesday. I will continue to hope and pray for Sarah and you all. love, Diane O'Neil