April 8, 2003 (Day 7 Post-Transplant)
Alex continues to do amazingly
well. She has developed a minor staph infection, but it's being treated with
antibiotics. She was in a lot worse shape on Day 7 of the first transplant,
so we're cautiously hopeful that things will be different this time.
We are moving to a new apartment
on Friday, so we'll have a new address:
200 East Eatondale Road
Durham, NC 27704
Our current apartment just isn't
working out very well for us, as there are parts of the apartment that look
like they haven't been cleaned in the last decade. Alex is going to be
neutropenic (no immune system) for our entire time here and we can't take a
chance that she'll be exposed to anything dangerous (e.g. Mold, Aspergillus,
etc...) . Our new apartment is in a brand new apartment complex and is a
significant upgrade over our current apartment. Amazingly it's only a few
dollars more per month than our current hole in the wall!
Well I'm going to wrap this up
and get some sleep. Andrea's parents are here tonight and they're taking
care of Nick, so I'm going to try to sleep for a full 8 hours! I'll try to
post some new photos soon.
April 3, 2003 (Day 2 Post-Transplant)
Just wanted to let everyone know
that Alex's transplant on April 1st went fine. The Cord Blood was infused
into her over a period of 45 minutes and so far there have been relatively
few complications other than some mucositis. Unfortunately the worst of it
is yet to come. Sometime within the next six days Alex will hit rock bottom
and then hopefully begin the long road back to good health. During the last
transplant, she hit rock bottom around Day 7 post-transplant and remained
there until Day 15. We would consider ourselves extremely lucky if we only
have eight bad days again this time.
Well I'm going to wrap this up
and get some sleep. I'll post more in a few days.
Sunday, March 30,
to believe it's been 16 days since my last update. Since then Alex went
through one week of inter-cranial radiation and one week of TBI (total body
irradiation) with only a few problems. Surprisingly the first day of
inter-cranial radiation was the worst day. About six hours after the
treatment Alex got a severe migraine and started vomiting. She has had
several similar reactions after spinal taps and interthecal chemo and we
always blamed it on the procedure. On a hunch we asked the anesthesiologist
to switch Alex from Nitrous Oxide to Propofol (magic milk) and that fixed
the problem. It appears that Alex is allergic to Nitrous Oxide, so that's
been added to her list of drugs that she should never be given!
During her two weeks of out-patient radiation Alex remained remarkably
active. We went out to dinner, visited our friends Henri & Steve, went to a
museum in Raleigh, went shopping, etc... We even took her to the North
Carolina Zoo on the weekend between treatments and she had a blast. It will
probably be the last time she gets to do something like that for quite
awhile, so it was worth the 90 minute drive back and forth from Durham.
Friday, on her last day of TBI, Alex was admitted to the Pediatric Bone
Marrow Unit at Duke University Medical Center. Yesterday (Saturday) she was
started on Cytoxin (high dose chemotherapy) and ATG (immuno-suppressant),
and she will continue on them through Monday. On Tuesday (April 1st) she
will receive her 2nd CBT (Cord Blood Transplant) and then it's just a
waiting game. Last time Alex engrafted (started producing donor cells) in 10
or 11 days, but it will probably take longer this time since she is
physically bigger. If things go well we could be out of the hospital by the
end of April, but we're not getting our hopes up yet.
As you can see from the
photo above, Alex's new hair finally arrived from
Childhood Leukemia Foundation paid
for the hair and one hat, which is extremely generous considering the set
Alex received usually costs $181! It was kind of a shock for us to see her
with a full head of hair again, but it was great to see her so happy.
While we're in the hospital Alex's mailing address will be:
Ms. Alexandra Martini
Duke University Medical Center
Durham, NC 27710
If you do want to send
something, just remember the rules. No flowers, plants, fruit, latex
balloons, puppies, kitties, fish, etc...
continues to do well. We have our first appointment with his neonatologist
on Tuesday, which coincidentally is Alex's transplant day. He was up to 7
pounds, 14 ounces last Wednesday, so I'm quite sure he's over 8 pounds by
now. He's been eating non-stop for the past few days, which means he's
probably due for a growth spurt very soon. It's fun to see the shock on
people's faces when we tell them that he's almost four months old. In fact
his original due date was March 22nd, so gestationally he is now 8 days old!
Well I'm taking care of both Alex and Nick tonight at the hospital so I
better wrap this up before one of them needs me. Thanks again
for over four years of love, prayers and support. Take care.
We are in the process of raising money for the expenses we are incurring during Alex's 2nd Transplant At Duke. We have
3 ways in which you can
make a donation:
Mail to: Frontier Bank
c/o Alexandra Elaine Martini
P.O. Box 527
Lake Stevens, WA 98258