Sunday February 22, 2004
We're here for our forty
lashes!!!!! I'm telling you, two healthy active kids will keep you busy!!!!
We've been having fun!
truly hasn't been much going on. We are still waiting for the immune studies
from her 9 month blood tests, but hopefully we'll have them within the next
week. We are hoping that we can get her into school in the next month or so!
Talk about mixed emotions! On one hand, we are sooooo ready and on the
other, it scares us to death because we won't be there to protect her. We
think about how rough kids can be and how fragile (read klutzy) she is and
we cringe. She's doing well with her homebound schooling and loves her
is just as much of a maniac as ever!!! It is amazing how fast that kid
moves! He is cruising all over the place, but luckily he's not walking yet.
We are definitely not ready for that! He is such a happy baby now, what a
difference from when he was a couple months old! He's hilarious around
women! Especially blondes. The funniest thing is if we go out to dinner and
have a blonde waitress. He pulls out all the stops and flirts up a storm! If
we happen to sit by a young couple on a date, he'll work on the girl and
Alex will work on the guy!!!! My kids are definitely Italian flirts!!!!
(February 19th) was Todd's and my 10th anniversary! We don't know what's
more amazing, that it's been 10 years or that a little over half of that has
been spent trying to keep Alex alive! Either way, WOW! My wonderful (read
temporarily insane) parents came up last weekend and shooed us out for a
quiet weekend ALONE!!!!!! So, off to Vancouver we went for three glorious
nights - ALONE! We had a wonderful time being pampered, lazy and well fed -
ALONE! Did I mention that we were alone???!!! My parents on the other hand
were quickly reminded why you have kids young and why one of the first
responses from parents when you ask them how they are is, "tired"! Let's
just say that Nick kept them a little busy!!!!
are getting ready to leave for Washington D.C. in about a week or so. We
don't have confirmation on our flight from Corporate Angel yet, but we may
be leaving next Thursday. We are going with the Leukemia & Lymphoma Society
to speak to our two Senators and Congressional Representative about the
funding (or lack thereof) for cancer research. We will be hitting hard
especially on the NIH cuts that Bush has put through and the damage that
it's going to do to all the progress that has been made in the past few
years. While we are very happy to be going and honored to have been asked,
we wish we weren't talking to our representatives, but those that have
actually voted with Bush on his policies. I will refrain from getting up on
my soap box as Todd is going to be up there long enough for both of us.
the end of April, we will be returning to Duke not only for Alex's one year
studies, but also for the Rainbow of Heroes Walk. This is a walk not only to
honor the patients that have had and are having transplants, but to raise
money for the Pediatric Bone Marrow Transplant Family Support Program. The
Family Support Program does amazing things for the bone marrow patients and
their families. Some of the things that they are responsible for are the
Best Buddy Volunteers, CellMates (kids support group), and ArtMates (kids
craft time) for the patients. For the families they have a Crisis Team,
pagers, phone cards, community meals, and Salon Day. Two of the things that
we used the most were the community meals and Salon Day. Every Tuesday
afternoon, Jane Schroeder walks onto the unit carrying a large stack of
Pizza Hut pizza in all varieties! She is quickly stalked by parents that
have been standing at the windows of their child's room waiting for her! The
parents sit in the family lounge and eat, talk, vent, cry and comfort one
another. At least two times a month fresh pastries and bagels are brought in
from a local bakery and the same thing happens, although at a slower pace as
mornings tend to start a bit later on the unit. Something about your kid
keeping you up all night puking or having to go to the bathroom every twenty
minutes makes it a little difficult to drag yourself out of bed too early!
Salon Day happens twice a month and is such a lifesaver!!!! I can't tell you
what a relief it is not to have to worry about finding a hairstylist in an
area that you're not familiar with and then, having to leave your sick child
to go there! After all, not too many people can go four months or sometimes
more without a haircut! The stylists come to the floor to cut, color and do
whatever else is necessary to keep the parents looking like they actually
have time to take care of themselves! It's awesome! All of these things are
provided at no cost to the families and with no financial help from the
Family Support Program survives solely by donations (yes you're about to get
hit up), mainly raised through this walk. So, we need your help!!!! Please
consider making a donation to this very vital part of the bone marrow
families' lives while on the unit! In fact, please consider hitting your
friends, families, neighbors and employers up for donations as well!!!
Donations should be made payable to: Duke PBMT-04RH with Alex Martini
written in the memo section. They can be mailed directly to: Jane Schroeder
DUMC 3350, Durham, NC 27710 or to us at 2504 7th St NW, Gig Harbor, WA
Click here if you would prefer to make a donation with a credit card.
In the section titled "Designate my Gift to the following:" make sure to
check the box for Duke Comprehensive Cancer Center, which can be found
listed underneath the "Non Annual Fund Designations".
Lastly, in the comments write "Rainbow of Heroes Walk" and "Alex Martini".
to read more about the walk and the Family Support Program. Thank you!
As usual, this has taken me much longer than it should to complete! Thank
you for your patience with us and our slowness in updating the site. We will
try to update as soon as we get back from D.C. to let you know how it went!
Andrea, Todd, Alex and Nick
MTBE & the NIH Budget Cuts
In the past I've been hesitant
to politicize Alex Update for fear of offending anyone, but recent events
have changed my mind. You may ask what events I'm referring to. They are the
click to read