Wednesday, October 10, 2007 - Madeline's ANC went down to ZERO today. When looking at her bone marrow, Dr. Friedmann reports very few cells but no leukemia, so she will be recovering at MGH for perhaps another week until her bone marrow produces some neutrophils. We are sad and disappointed about our continued stay, and will have more news in the coming days about the specific Minimal Residue Disease (MRD) test sent to Johns Hopkins Medicine. But, we are feeling very optimistic about the state of her leukemia. Her doctor mentioned that Madeline has done very well and often children are postponed from leaving the hospital or starting the consolidation phase due to infections, which Madeline has fortunately avoided. Consolidation ideally starts one week after induction (day 36) but the doctor anticipates that this date will be postponed for Madeline to recover and produce a consistent ANC level of 750. Love, c
Well, after having cleaned all the accoutrements out of Madeline's hospital room completely, there is some sad irony in the fact that we're staying in Ellison 1816 for a while longer. The nurses, trying to say something positive, commented that "the room sure does look a lot bigger." Julia and I will do something for decoration, but we don't yet know what. Julia wanted to just bring everything back when we visited this evening... Ha! We did bring back a wheelchair's worth of stuff: laptop, paper plates and spoons, a lovely pesto pasta dinner that friends dropped off for us, salt, Chris' bag of clothes and toiletries...
As Chris mentioned, while we're pretty disappointed by the ANC score, we feel better about the leukemia score. The oncologists took a microscopic look at today's samples, and they didn't see any leukemia cells. It will still take some time for the Johns Hopkins work, but Dr. Ebb said that the more accurate tests typically confirm MGH's preliminary in-house analysis. We'll take this as good news.
Dr. Ebb told us that Daunomycin was the important and very powerful chemo drug that has had the unfortunate side-effect of slowing the recovery of her healthy bone marrow. The treatment protocol allows one to two weeks for ANC recovery, and we are in that period. We had hoped to get home sooner rather than later, but we will get home... and it will be sweet.
In the meantime, keep that positive energy focused toward Ellison 1816! NDL!
Day 31: Oh no, ANC back down to...
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10 comments:
Dear Chris and Trey,
After learning of your blog in today's Unitarian, I sat down and read the whole thing...including returning just now to find today's disappointing news that Mady cannot go home as hoped. I shared with Monte and Michael at dinner tonight some of what I'd read and while we don't have the privilege of knowing Mady personally - other than as a beautiful familiar face at First Church - we are keeping her - and you and Julia - in our hearts. Your heartfelt sharing of the story is appreciated so that those of us at the periphery of your lives can know what you are going through and send you all the healing vibes we can muster. It absolutely sounds like there is plenty of reason for hope and optimism and yet what a journey she - and you - must travel first! We will hope for the very very best outcome.
With love and concern,
Sara, Monte and Michael)
Hi Chris, Mady, Trey, and Julia!
I'm sorry Mady and your family remain guests at L'Hotel MGH, but take comfort that it WILL end, and Mady IS getting better! Maybe it's time to have some fun in your last weeks, like pulling pranks on the staff (maybe escape to the park? wait, done that...), or making gifts for all the new arrivals on your floor? You have so much life to share, and hope to offer!
You are all in our prayers, and I know God is watching over you.
Love, Brian and Family
Maybe we can send some more things to Mady's room so you don't have to bring back the old decrotations. I am sure Julia will do a good job help re-decorating...
DAMN!
I was soo hopeful you would all be home today!
:-)
John Jordan
sorry i drew that simley face the wrong way
he was supposed to be :-(
John
.we continue to pray and do the dance. We will never give up. Happy, though, that bone marrow shows no leukemia cells. 'Way to go, Julia---keep decoratin'!XXOO, GP &E.
They took everything out of your room? Wow, that's hard to imagine.
Well, I'm glad you don't show any signs of leukemia. That means as soon as you get a high ANC you can come home! I will keep doing the neutrophil dance - I'm sure the ANC will pop right back up...giving it a day or so to do its stuff.
~~Stephanie~~
I will light some incense for all of you tonite.
JJ
Take a deep breath. It is going to happen. Just not soon enough for any of us. Weary one minute; determined the next. We hope you get some decent sleep in that place. Hospitals are notorious for waking people up at all hours of the night! But we know the folks there do the best they can. How can they help but love you?
Love to all of you.
Carlee, Steve and Joel
Soon, soon you will be home, Mady and Chris and Trey. This is just a hiccup on the way.
Besides, it's been a rainy, blechy week. You deserve beautiful weather for your grand return.
Think of you, and thinking NDL,
Gale, Karl and the boys
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