Saturday, March 21, 2009

The last couple of days have gone well for Sarah and the rest of us. The VNA came on Friday morning and the lab work showed that all of Sarah's counts were down. Her WBC's were at 0.18 and the blasts were 10% of that. We are glad the blasts came down but still mindful that we need to be watchful for infection with such a low white count. The VNA will be back early Monday morning for more labs and most likely she will go to the hospital to get some red cells and platelets. I almost forgot to say that Sarah's fever is gone. yay. She is on some heavy lifting antibiotics.

I have worked out my clinical trial issues and come to a decision as to what I am willing to do. If Sarah does qualify I will definitely agree to take her. Which brings up a few other thoughts. The trial we are thinking of is taking place in Maryland and Tennessee. We are not sure which hospital we would go to yet, but be assured wherever it is, we will all go. Neither of us are willing to let the other parent take Sarah hours away or to another state to most likely die without her family. Sarah's need for her siblings became very apparent to us during her BMT and most recently the last few months that she has spent in the hospital. Without her siblings she became very depressed and has sometimes cried, "I need more people", and "I need my family". No, wherever she goes Sarah will have all of her "people" with her. At this point, I can not imagine us making any other choice. We don't know how we are going to make this happen logistically and financially but we have decided in our hearts that if it comes to a trial we will.

Most people have no idea what it is like to have a serious illness like cancer take over your life(including us before). It is all consuming leaving little time for anything else. My good friend Lynn has been doing most of the Sam's club runs for us and thankfully all our children help with running the house. Even so it can be very difficult at times to get our brains to think anything not cancer related, especially now. So normal every day things seem more difficult to accomplish.

Thank you to all of you who sent us your love and messages. I knew you were out there. We were overwhelmed by your love and compassion and so blessed and encouraged to hear from you. Keep em coming.

Susan

PS Sarah has been having lots of fun playing with her siblings, her cousin Philip, and her Leapster.

Thursday, March 19, 2009

Clinical Trial?

We brought Sarah home from the hospital yesterday afternoon. She was so adorable as we were leaving, hugging and kissing all of her nurses goodbye. Sarah is a precious little girl and has won many hearts with her sweet disposition. Bringing her home was bitterweet. We want so much for her to be at home but at home and well. Sarah came home with a fever and blasts in her blood. The fevers are worrisome in a big way because her white cell count is so low; for example, she is at 0.3. And the blasts are... just bad!

We called to someone at the NIH in Maryland about a clinical trial and had Sarah's blood sent to them to see if she would qualify. We should know by Monday. It is very hard to accept that modern medicine has nothing more to offer Sarah other than a Phase 1 clinical trial. Not a place you want to be with your precious baby. Ben definitely wants to take Sarah to a clinical trial if she qualifies. Although, it goes against everything inside of me to accept an end to Sarah's treatment, I am not sure I can agree to a clinical trial. On the flip side of that, I desperately want for her to be well and would travel to the ends of the earth if I knew we could cure her. We'll see how God works things out for her. Praying on this.

If Sarah does qualify for a clinical trial, and we do move forward with that, and if by some miracle she is able to go for another BMT we are going to set up a charitable fund of some sort to help these expenses. A number of people have asked if they can help us in this way and up until now we haven't needed it, but if Sarah is able to receive continued treatment we are definitely going to.

Sarah's VNA will be coming tomorrow morning to draw labs. If Sarah needs to be transfused we'll be at Dartmouth most of the afternoon.

I know that Sarah's Circle gets a lot of hits every day but we don't know who is reading the updates. It would really encourage us if you would leave us a note and let us know you are praying or thinking of us.

Susan

Monday, March 16, 2009

3-16-09: High Dose Methotrexate Fails

The chemotherapy administered Thursday evening through Friday evening did not reduce Sarah's blast percentage in her white blood cells.

She went in at 73% blast and is currently at 86% blast. The treatment did lower her total white blood cell count which reduces the urgency of follow on treatment. Susan and I are working with the oncology team to determine what to do next.

The options being investigated:
-Clinical trials Sarah might qualify for. These would be phase 1 clinical trials. Sarah would need to meet specific requirements to participate in a clinical trial and be off all chemotherapy for several weeks before beginning this option.
-One more targeted drug (Nilotinib). This option would essentially be close to a stab in the dark since safe and effective pediatric dosages have not been investigated. We'd be using it off-label for Sarah.
-Control of the leukemia for as long as possible with chemotherapy. To some extent that's what we've been doing since her diagnosis as none of the treatments have yielded a durable remission yet. Still something we would not like to consider as the primary objective.

We think Sarah will be released from the hospital Tuesday or Wednesday. I think we'll need to make a decision sometime this week regarding Sarah's next treatment. We do not like any of the doors in front of us and are praying God opens the right one for Sarah. It's very difficult but we are remaining hopeful. We also have faith that God is doing good in Sarah and our lives. Please keep Sarah in your prayers.

Sarah had a nice time at the park last Sunday playing with her family. I attached a slide show below (it's a little big).

-Ben

video