Day +133: Dasatinib Arrives

Sarah and her Mom (Susan)
Today







The drug designed to target Sarah's strain of leukemia (Dasatinib) arrived late in the afternoon today. We were anxious to get her started on the medication. Earlier in the day it looked like it might not show up until tomorrow (not good). At any rate, Sarah took her first 20mg pill tonight at 8:30pm. She'll be taking one 20mg pill at 8:00am and another at 8:00pm. She will also continue to receive chemotherapy similar to that used during her first induction.

Early this morning Sarah's oncologist gave us some great news. Sarah's white blood cell count went from 140,000 to 69,000 over the last day. This was a clear indication that the chemotherapy was being effective at killing the cancer cells in her blood. This should translate into some level of cancer cell reduction in her bone marrow too, but from our previous experience not the same level of reduction. We had to use Imatinib to get her bone marrow completely clear during her last induction. We are not using Imatinib this go around as her cancer cells have mutated and are now resistant to Imatinib. The Dasatinib will be replacing the Imatinib for Sarah's relapse induction.

More good news, Sarah's oxygen saturation level was normal all day. She had another x-ray today and there is still some cloudiness present, but reduced from Wednesdays x-ray. The doctors are still not sure what is causing this.

Sarah felt tired most of the day, but she is clearly in better shape than before we brought her back to the hospital and she seems to be heading in the right direction. She looked good and enjoyed visiting with her brothers and sisters and one set of grandparents.

I'd call today a good day for Sarah and her family. Again, I'm grateful to God for what he has given us.

Sarah's oncologist is diligent to remind us (kindly) of the real possibility that Sarah may not reach remission this time, but we are keeping that goal in site and remain hopeful. Please keep that goal in your prayers for Sarah too.

-Ben
Lamentations 3:24-26

Day +132: Small Improvements

Sarah did not sleep soundly last night. Her oxygen saturation was low during the night so Susan and I sort of half slept/half watched Sarah. We were helping to keep an external oxygen supply near her face to keep her saturation level up. I was pretty tired today, but not as much as Sarah.

She has been very tired today. Her red blood cell count was low and the doctors planned to give her a transfusion, but they wanted to see the results of an EKG and Echocardiogram also scheduled today first.

There was concern that the low saturation level was due to difficulty with Sarah's heart. The EKG and Echocardiogram turned out clean and her heart function is normal. The blood transfusion is finishing up right now.

Sarah 's oxygen saturation level returned to normal, her elevated pulse dropped to normal and her shallow breathing appeared normal immediately after the red blood cell transfusion began.

Sarah's white blood cell count had been rising very rapidly (doubling in just one day) over the last several days, but did not rise at all over the last 24 hours. It could be the chemotherapy is beginning to work, but it's a little soon to tell.

The Dasatinib will arrive from California tomorrow to begin that part of Sarah's treatment.

I do not know if these improvements will hold, but we are very grateful for them. We remain hopeful that God will allow Sarah to remain with us.
-Ben

Day +131: Chemo Returns First

Sarah has been in the hospital one night and one day now. The stress for Susan and me is pretty intense.

Sarah is exhibiting low oxygen saturation levels similar to what she did during the bone marrow transplant. Her doctors found some fluid in her lungs from an x-ray this afternoon. We are trying not to freak out about this. It could be another case of pneumonia like we saw during Sarah's BMT. Sarah's doctors are working to get a handle on this.

Both Susan and I are going to be staying with Sarah at the hospital tonight. The other children are at home being watched by a close friend of the family. They are going to be coming back to Dartmouth to see Sarah everyday for the time being.

The chemo hasn't caused a great deal of suffering for Sarah yet. She has experienced some nausea and the steroids are starting to effect her behavior. Like I said, not bad yet. She had intrathecal chemo treatment today around 11:00am.

Sarah's primary oncologist gave us some more specifics regarding her treatment plan to get her into remission. They had been having trouble tracking down the Dasatinib Sarah needs, but managed to find some in California. She will begin the Dasatinib treatment Friday and continue chemotherapy in the meantime. They are checking her blood counts twice a day to detect increases/decreases in blood counts and determine if the treatment is moving her towards remission. Sarah's doctor said they'd could use apheresis to remove some of the white blood cells to buy some time giving the Dasatinib a chance to work. Apheresis is a process used to harvest different types of blood cells for uses like bone marrow transplants (oddly enough).

Please keep Sarah in your prayers over the next few days. She is a good little girl and we want her to grow up to be a good woman.

-Ben

Day +130: Hope for Remission

Sarah Today...

My update on Sarah's relapse is late due to our computer being down yesterday, but here it is...

We were not given very encouraging news from Sarah's doctors. We essentially have three options regarding Sarah's relapse:

1. Try to achieve remission using "moderate" chemotherapy w/Dasatinib

2. Try to achieve remission using "extreme" chemotherapy w/Dasatinib

3. No treatment (other than minimizing discomfort)

Dasatinib is a newly approved drug intended for difficult to treat leukemia's.

If options 1 or 2 successfully get Sarah into remission, we'd need to keep her in remission for 3 months and shoot for another bone marrow transplant. Options 1 and 2 have ~10% likelihood of getting Sarah into remission. The difficulty Susan and I have with options 1 and 2 are the low likelihood of achieving remission coupled with the suffering Sarah would likely see with the chemotherapy. She would also possibly spend many of her last days in the hospital and not at home.

The difficulty we have with option 3 is obvious.

Sarah's bone marrow is 95% blasts (cancer cells), but her spinal fluid showed no cancer cells. After much praying by us and many others God led Susan and I to go with option 1. We made that decision this morning and arrived at Dartmouth this afternoon to begin treatment.

We should know if the treatment is being effective in about one week.

We are very hopeful that God will and know that God can cure Sarah of her cancer. Please pray specifically that God will put Sarah back into remission.

-Ben

Matthew 14:24-27