12-19-08: Good News and Not So Good News

Good News: Dr. Van Hoff called me on Thursday and said the Flow Cytometry results on Sarah's bone marrow biopsy came back negative relative to the presence of leukemia. This was the first of two higher resolution tests we were waiting on for her bone marrow. Next week we hear about the molecular level test results.


Not So Good News: Sarah was checked back into the hospital Thursday Night. She developed a fever of 102F and the doctors told us to bring her in. Several of Sarah's siblings have colds and we think she caught one too.


Sarah is now recieving TPN (Total Parenatel Nutrition) again. She is losing weight again and lost all the weight gain she made while on the appetite stimulant (Marinol) a few weeks ago. We are good with this as she needs to get as healthy as possible in preparation for her second bone marrow transplant. Susan and I will continue the TPN when Sarah is released from the hospital.


Unfortunately, Sarah still has encephalopathy. She had another EEG today at the hospital. The neurologist siad Sarah's brain wave activity was even lower than her last EEG(lastweek). This is most likely due to the two doses of Dasatinib she had afterher last EEG. She has been off the Dasatinib for alsmost one week now. The neurologist was pretty sure the condition would corect over time, but not much is known about Dasatinib use in small children.


Like I said, Good News and Not So Good News. God has done so much for us so far, but I believe he wants us to keep up the conversation. Plenty of things to pray for so please keep at it.


-Ben
Acts 12:5-11

12-17-08: Thank you God for Remission #2

I have had only limited access to the internet lately, so another late update on Sarah.
Sarah was released from the hospital Monday evening. Her blood pressure is stable and she’s taking two blood pressure medications. The doctors felt comfortable with this as long as we did.

Sarah had a lumbar puncture (intrathecal chemo) and a bone marrow (BM) biopsy today (Wednesday). This was an outpatient visit and we left the hospital ~3:30pm. On the way home Dr. Van Hoff (one of Sarah’s oncologists) called my cell phone with the initial BM results. Sarah’s BM was in remission!! There were no blasts (mature cancer cells) found in her BM under microscopic examination. There are also two higher resolution (molecular) tests being conducted on her BM. The doctor said he would expect to see some pre-blast cancer activity from the molecular testing. We’ll learn more over the next week.

The doctors told us Sarah might have a 10% likelihood of reaching remission this time. Sarah’s BM was 95% blast a little more than one week ago and now it’s not microscopically detectable in either her blood or her BM. The doctors said they did not expect these results and early on strongly suggested that no treatment was a reasonable course of action. Susan and I prayed really hard and often that she would reach remission again and I know that countless others have been doing the same. From Sarah’s doctors and nurses to folks outside of the US like India and Israel. I know that God always hears our prayers. He doesn’t always give us exactly what we ask for, but he always answers. Thank you God for hearing and answering our prayers. We are grateful that you directed us to continue treatment for Sarah and for the miraculously bringing her into remission again.

We are waiting for her recover from the encephalopathy that was brought on by the Dasatinib. We are watching Sarah and praying that within a few days she will be responding normally to her surroundings. She hasn’t been on the Dasatinib for 2 days now.

We aren’t sure where Sarah’s treatment is headed next. A revised chemo protocol should follow and then preparation for bone marrow transplant #2 I guess. More good news…
The initial BM donor database search yielded ~16 potential matches for Sarah. More on that as we get closer to a transplant.

-Ben
Numbers 11:21-23

12-14-08: Sarah's Mental State Improves

Sarah has been up on the pedi. floor since Thursday night and so far she hasn't had any more hypertensive events. That means her blood pressure has not gone too high and has been controlled by oral meds.

Since Ben last posted, Sarah has had an MRI and EEG to check out her brain. The MRI was normal. Great news! But the EEG did show some slowing in her brain activity. The neurologist told us that the brain waves of children Sarah's age are 6-8 cycles per second but Sarah was only at 4-5 cycles per second. We don't know exactly what this means but we sure do know what it looks like. Sarah is definitely not herself. Upon waking in the morning or even from a nap she can talk and tell us what she needs or wants. Saturday she woke and said she was hungry (at 4 am...thanks dexamathasone). Sadly we had to tell her no, since she was NPO (no food or drinks) from midnight on, due to a scheduled Lumbar Puncture that morning. Even on the way to her procedure she continued talking and asking for things like candy canes. As the day progressed she went inward. When we talk to Sarah she does make eye contact and smile sometimes. But most often she stares off into space and doesn't respond. Her walking is less coordinated and her speech becomes more slurred as the day progresses.

We think she is improving though. Today she has managed to "stay with us" mentally and is talking more with less slurring. Walking has improved too. The Dasatinib was held all day Saturday and this morning. One of Sarah's oncologists suspects the Dasatinib is the culprit for her reduced mental capacity. She'll go back on the Dasatinib tonight. If the doctor is right, Sarah's mental capability will diminish again. Personally, I think its related to the high blood pressure incident from last Monday. Either way, it does not appear to be permanent and we are hopeful her mind will recover 100%.

Sarah is scheduled for a bone marrow biopsy this Wednesday to evaluate her remission state. Her blood is still free of Leukemic cells. We think Sarah will be released to outpatient visits within 1-2 days.

Take a look at our new van below. The ice storm in the North East got the most of us this year.

-Susan