Greetings, listmates!
The message from Rob recently requesting all members to post
occasionally prompts this update. I had wanted to wait until May
(you'll see why in a minute), but I don't want to be 'unsubscribed'
so I will update you all now. :-)
I haven't posted in quite a while and I think only the oldtimers
will remember my niece, Chelsea, now 17 years old, and me (Auntie
Lori). I have been a member of this group for 5 years next month.
Remarkable. I can't believe it's been that long.
My niece, Chelsea, was diagnosed 1/13/00, with CML. She had turned
12 just 2 1/2 months before. It was devastating to the family. And
she was a very sick little girl (Ph+, WBC 510,000, 10% blasts). I
found this group four days later and it was a HUGE lifesaver. THANK
YOU, ROB, FOR CREATING AND MAINTAINING THIS SITE.
At the time, Gleevec, known only as STI571, was in patient trials
but only for adults. My brother (her dad) contacted Dr. Druker who
advised BMT, based on Chelsea's age.
So, in May of 2000, she had a MUD cord blood transplant. The post-
transplant recovery was awful. She went through every problem you
could think of: subsequent(numerous and lengthy)hospitalizations
for septic shock, dehydration, shingles, post-herpetic neuralgia,
seizure (from from FK506), nausea and vomiting (2-month
hospitalizations--twice), avascular necrosis of both knees (from the
prednisone) and acute, then chronic GvHD of skin. Just to name a
few. :-) She currently only takes HRT (due to the pre-conditioning
chemo and TBI) and OTC analgesics for her knees.
Throughout it all she has been amazing. In 2002, the Make-A-Wish
Foundation sent her and her family to Africa for a safari! She came
back with some wonderful memories and pictures.
This past summer, I took her and my 14-yr-old daughter on a "Just
the Girls Roadtrip" to Washington State and back. We called
it, "The College Tour," because Chelsea's graduating from
high school this year and wants to go to college to become a nurse!
On our trip, we were able to visit with Nancy C in Oregon on a rainy
August night for a great dinner of pizza and conversation. Nancy
had always sent UO 'Ducks' gear to Chels when she was having her
transplant. Chelsea had never forgotten and wanted to meet this
lady. It was wonderful to see them connect.
We got a huge surprise when we returned home. She was notified that
she was to have surgery in a few days for her right knee. She had
a 'fresh osteochondral allograft' at a hospital in San Diego by Dr.
Bugbee who is an expert in this procedure.
It's turned out to be a success (so far) and she's currently on the
waiting list for a left knee donor. It is so exciting for her to
have a new knee and walk without pain. We're hoping that a left
knee becomes available soon so that the recovery process will be
over before she needs to go off to college.
And already she has heard from San Francisco State--they accepted
her! Yay! It was one of her top picks.
She still has health issues, but is living a pretty good life. She
has lots of friends, a job, stellar grades--a bright future and all
of us love her to pieces.
This Christmas we're going to be in a cabin up in the Big Bear
area. This is extra special, because the last time she was there
was the Christmas before her diagnosis. She has wanted to go back
for a very long time...and finally we will!
Well, this was written in haste and I'm sure I left out some things,
but I wanted to let everyone know that Warrior Chelsea is out there
striving and succeeding!
Take care everyone.
Peace and love,
Auntie Lori
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