Fiji, anyone?

Fiji is warm and sunny and the beaches look amazing. There are no doctors to say Alivia is sick, or take her blood, or schedule another bone marrow biopsy. And no one there will offer meds that might kill her or bone marrow transplant. Just fruity cocktails and suntan lotion. So I'm moving to Fiji. Anyone want to come along?

Livi's counts all stayed pretty much the same. Her plateletes were up a bit but otherwise pretty much stable. I get excited about stable but it turns out stable isn't really that great either. The levels still aren't normal. Our doc heard from Arcici (Hopkins bigwig) and he recommended another bone marrow biopsy (on September 12th). From that biopsy they will run all the citogenetics (AGAIN) and test for AML once again. Then they would like to either start treating for AML if she has it or go straight to bone marrow transplant. (read with tears in your eyes). I can't even believe I'm having conversations like this calmly. Inside I feel like I should be shaking the doc and screaming "this is my baby your talking about!! how can you calmly go through options that might kill her!?!" I guess the rational is that at some point her bone marrow may stop working all together and it would be better to transplant before that happens. Next week when they take her blood they will take a bit extra so they can get her into the registry to start looking for a match for her. He said that doesn't mean we will definetly do the transplant but matches can be hard to find so its better to start looking now. I may be asking a big favor of all of you soon. If she needs a transplant and none of her family matches we will have to search for a match. None of this is set in stone yet but it feels likes its creeping up on us. I told the doc that we wanted to at least try Glevace first and he said that would be fine and they would start trying to get it into liquid form. Also they might give some steriods and maybe vincristine to try to do everything possible before transplant.

I know that God is in control and that I'm not supposed to trust in what the doctors are say but instead trust that God is in control but it sure is hard when they are saying words like "fatal", "death", "highest levels of chemo", "kill the bone marrow".

Here are the very specific prayer requests...
...bone marrow biopsy that shows all is well
...counts that are NORMAL not just stable
...some new test that shows nothing is wrong
...healing.


Thanks to
Jill Wilson and Sue Minich for thank you notes

This is my last plea for thank you notes. Folks if we can spend one day a week at the hospital you can spend 5 min writing a thank you note. Please do this for me, James and Alivia. If mailed tomorrow I will get them Monday. I am fully expecting to see a ton of notes in my mail Monday or be handed a bunch on Sunday. Our address (one last time) 2768 Lititz Pike, lancaster, pa 17601. I'm not sure you realize how much this means to me, to everyone who has done it already thanks times about a million.

Most recent tally
Janiece- 39
Holly- 39
Lois- 40
Chris-39
Cindy- 43
Carol- 41
Joanne- 40
Maritza-41
Denise-43