2003 (Day 78 Post-Transplant)
I get an email from my dearest mother this morning... Here's her version of
"let's get her to write an update and act like I'm not being pushy". It goes
something like this..."I went shopping and got Alex some shorts and
shirts and oh, by the way, 4 people have called me looking for an update!"
Not pushy at all. Did I ever tell you that my Mom used to teach a class in
tenacity??!! HeHeHe! I love you Mommy!!!!
We are all doing very well. Really homesick and ready to leave, but doing
well. Todd had his 38th birthday on Saturday (man is he OLD!). He decided
that the only thing he wanted was a full 8 hours sleep! So, I laughed in his
face and then started planning behind his back. I made arrangements for Nick
to spend the night at our friend Margot's house with her family up the
street. Then I made arrangements for Alex to go play with her transplant
and her brother Mikey for the evening. Todd thought that both kids were
going to go play at the Mitchem's house (Madi's) and we were going to go
have an uninterrupted "big people" dinner! This at least allowed me to be
milling around getting Nicks stuff ready without him getting suspicious.
Then, Margot showed up. He still had no clue! Until I whipped out my Nick
how-to sheet! He was all smiles after that! We had a fabulous QUIET dinner
and he had his wonderful night of sleep! Thank you to the Hausmans and
Mitchems for making it possible!
had her weekly clinic appointment yesterday. We only have to go to clinic
once a week (Tuesday) and draw blood twice a week (Tuesday and Friday)! She
has not needed a platelet transfusion in 2 1/2 weeks and it's been about 5
or 6 weeks since her last whole blood transfusion. She is down to only 2 mg
of Solumedrol (steroids) twice a day, next week it will be only 1 mg twice a
day, and then the following week she'll be completely off of them!
They have taken her off the Enalapril (blood pressure medication), so she is
now on one blood pressure medicine. We are also weaning her off the Depakote
(anticonvulsant) which will be nice. We have a feeling that the Depakote is
adding to how tired she is and how flat her personality has been. The
doctors are still thrilled with her progress as are we. She has gotten to go
over to Mikey and Madi's quite a bit lately and loves it. In fact, I think
she feels her day is not complete if she doesn't get to see them and play!
Today, she spent the day trying to convince Todd and me that it was "Alex's
Day"! She feels very slighted that Mommy had Mother's Day and Daddy had
Father's Day, and she wants to know where her day is! We keep trying to
explain to her that every day is her day, but she's not buying it!!!
100 days post-transplant is quickly approaching, as today was Day 78. Only
22 more days until we get to go home!!!! I spoke with Liz at Corporate Angel
last week and convinced her to call the company that flew us out here from
Seattle. She did this to pacify me, since there was little chance they would
have their flight schedule set this far in advance. At least that's what we
thought. Needless to say we were amazed when Liz called us with the news
that there is a flight going from D.C. to Seattle on July 11th!!! We are
praying and keeping our fingers crossed that this one will work out because
the next scheduled flight after that is July 24th or 25th and we DON'T want
to wait that long!!!! Not only that, but we can't afford to wait that long!
The extra $3000 a month that we spend to be here has taken it's toll and we
are beyond tapped out. Plus our car had to be towed to the mechanic on
Monday because all of the oil leaked out of it!!! Hopefully it won't be a
major repair like the last three times it broke down. I want to be a kid
again. Kids don't have to pay bills!
had two appointments last week. One with the cardiologist and the other with
the pediatrician. The cardiologist was very pleased. There is no longer a
heart murmur and his EKG was perfect! The pediatrician was blown away again
at how well he is doing. He was up to 12 lbs 7 oz and 24 inches long! We
started him on Prilosec to see if it helps with his reflux. So far, it seems
to work for about 12 hours. I don't know if it can be given twice a day or
not, but we're going to find out.
The pediatrician also felt that since Nick is already doing much of what a 6
month old does, as far as how strong he is, that it's time to start rice
cereal! I kind of thought she was a little nuts, but I gave it a try and he
loves it! He's doing much better than I ever would have imagined with it. He
does however, seem to take after his daddy. If I don't shovel it in fast
enough, I get yelled at! We just can't get over how strong he is. He was
laying on the bed with Todd the other day and he pushed up on his hands and
was able to get his arms completely straight and hold it! It's a little
scary, as we're afraid he's going to wake up crawling in a few days! I don't
think he got the memo that he's a preemie!
As usual, we have some prayer requests...
- In the last update I told you
about the family from Greece who had two sons going through transplant.
Their son Aristophanes passed away on May 30th and now their other son
Hermes is in the PICU. I have not been able to find out why, but I will
let you know when I do. Unfortunately they do not have a website.
Baby Noah is still in
great need of your prayers and a miracle. He is still in PICU, but the
plan is to extubate him tomorrow and hopefully move him back to the bone
marrow unit. This is not as happy a time as it should be for Greg and
Debbie as they are faced with some decisions right now that no parent
should ever have to make. We love you Greg, Debbie and Noah. Stay faithful
and strong, we're all praying.
Baby Jordan is back on
the bone marrow unit, but still has a long way to go.
- Juan is still in PICU. He
also does not have a website.
beat Alex's record for getting out post transplant by a day, is in the
PICU with multiple problems.
Jillian, who relapsed at
a 100 days post-transplant, has been given a boost of cord blood cells and
a couple of doses of Campath, but so far she still has 33% Leukemia blasts
in her blood.
It seems that there is an endless
supply of heartache around here and while we try to rejoice in Alex's
accomplishments and good health, we know that in a blink of an eye it can
all be taken away. It's a terrifying reality to deal with everyday. I
guarantee that this is one reality show that NO ONE would sign up for. I can
just see the commercial... Hey TV land viewers! Are you expecting? Come on
our show! We'll be there as you give birth to your beautiful child and watch
you bond and learn to love this baby more than you ever thought you could
love anything. Then, to mix things up, we'll drop a bomb!!!! Yes, we're
going to make sure that your child gets a terminal illness!!!! Yes, let
America sit back and watch as you struggle to keep your child alive and
spend every last penny you have doing so! NOT!!!!
I'm sorry to be so cynical, but part of this is left over anger from a
guestbook entry posted on baby Noah's site a few days ago (by an obviously
sick person), accusing his parents Greg and Debbie, as well as all other
parents of sick kids, of using them to get money from people! This sick
person also had the nerve to tell them their kid would grow up begging and
that they should get a job! Fury does not even begin to cover how I felt
when I read it. We have been trying to save Alex's life for 4 years and 7
months now. We have relocated three times across country and moved twice. In
4 years and 7 months we have not been able to save a dime, as everything is
spent on keeping her alive, and our story is not unique. It's the same story
that you hear over and over from families on the unit. Nobody chooses to see
their child suffer and wonder how they are going to pay the bills,
especially the health insurance bill. I know that this is a very sick
individual in need of a lot of help, but it still really got to me. I think
I'm done venting now. Sorry.
We want to thank everyone that has signed Alex's guest book. We really love
reading the messages and thrive off the encouragement we get from them.
Thank you for your love support and prayers. It's been such a long road and
it wouldn't have been possible if we were doing it alone.
-- Andrea, Todd, Alex & Nick Martini
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