Tom's at Day 95

August 9, 2005

Dear CML group members,

I haven't written much in regards to Tom's transplant. He is now at day

95 and on the upswing. I am not expecting to leave Minneapolis by day

100 (Aug. 13) but probably shortly thereafter. Tom's hundredth day will

be exactly one year after he was diagnosed with CML (Friday the 13th -

who could forget). Tom's complications from the transplant - graft vs

host of the skin and liver (both gone now), CMV (cytomegalovirus -

almost gone now), ganciclovir for the CMV which knocked his white cell

count down to .5, prednisone induced diabetes, and he still hasn't

finished all his homework. Good things that happened with the

transplant - graft vs host disease means graft vs leukemia effect, no

fevers since original discharge from the hospital (day 28), gaining

LOTS of medical/medicine knowledge, and I got to spend 95 days with my

son - priceless. Right now we are waiting for Tom's WBC and platelets

to rebound now that he is on foscarnet for the CMV. The counts have

slowly climbed. He stopped receiving growth factor shots to boost his

counts so there has been a slight dip in the WBC (3.7) and platelet

infusions almost every other day.

I am constantly reminded how blessed I am that Tom has had a relatively

smooth journey so far. University of Minnesota Children's Hospital

transplant unit is almost always full. We have gotten to know many

families whose children have had very rough journeys. To read more

about Tom's journey - go to:

Thanks for all your past support. It's been an important part of this

journey,

Barb Neddo,

Eagle River, WI

Mom to Tom, 16, dx CML 8/13/04

MUD BMT 05/05/05,

100 days coming up on 8/13/05

August 9, 2005

Barb I'm so happy Tom is doing so well. I check in on you guys

regularly and send prayers daily. Give him a big hug for all us CMLers

out here and tell him to keep on fighting.

Amy B.

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