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Double
Digit!
Travis Update (-:
November 3, 2002
Dear family and friends,
This update is so long overdue… I was literally
overwhelmed with our amazing trip to DC to put the experience into words
until now. I’m still not sure how to describe the powerful emotions we
all felt at this packed and meaningful trip… but I’ll type and see what
comes out here.
First, though, the most important update. Travis
celebrates yet another milestone tomorrow, November 4, 2002, he “turns
double digit”. Yup, my oldest baby is going to be a decade tomorrow.
What an unbelievable miracle! I think back to the dark and frightening
hospital moments and hours… and then fast forward to today… it’s like
separate lifetimes that have somehow morphed together around one child.
Travis is still growing, playing, learning and doing – like a 4th
grader should be. He’s such a sweetheart -- again had gifts donated to
the HOT unit for his birthday this year – that’s our Travis!
Intellectually, emotionally and physically, he seems to be on top of the
world. I pray every day that this miracle continues. The only minor
things he’s experienced (for all you post BMT families) this year was a
few additional “Yag laser” eye procedures (2 on each eye – about 4 months
apart) to re-open the membrane that had grown back to cloud his vision
(post-cataract surgery). This is a breeze procedure – 2 minutes in the
doctor’s chair while the doctor shines a laser light into Travis’ eye,
opening the membrane. NO pain or discomfort. And after the dilation
drops wear off, Travis was seeing as well as possible (he’s had glasses
since he was 3 years old) and reading fine once again. We try to remember
to give him Pred(nisone) Forte drops each day (wow – how far we’ve come
from the days of panic at 5 minutes late for a med) – but other than that,
he’s just a kid who takes a multivitamin each day (oops, when we remember
that!). Who’d a thunk it? Unbelievable.
Washington DC – whew – how to put into words! Joe,
Travis, Spencer and I arrived a bit early in the day to squeeze in a
little sightseeing with the boys before the whirlwind began. And THEN, at
about 5 pm, we made our way over to the hotel where Travis’ hero donor,
Marge, was to arrive from the airport. We stayed out of sight at the
entrance to the hotel – and sure enough, as Marge and her friend got out
of the cab, Travis and Spencer ran up behind Marge (and quickly said her
name, to be SURE they had the right person) before Travis wrapped his arms
around her in a HUGE hug. Marge was breathless at this surprise hello –
and still had such presence and grace to sweep Spencer up and give him his
own special hug as well. I think Marge’s friend Debbie had only the first
inkling of how deeply moving this next 36 hours would be! I’d been pretty
calm while waiting for Marge to arrive – after all, we’d met 2 times
before this in person, and speak by phone every month or so… but sure
enough, after seeing her hug my boys, when it came time for me to hug her,
I melted – sobbing as I clung to her. Again remembering so vividly that
this woman was the only woman in the world who could save my child’s life
– and she did. After all this meeting emotion, Joe swooped in with
flowers for Marge – and more hugs. It was a beautiful way to meet up
again and celebrate 4 years since Marge donated her marrow to save Travis’
life.
We caught up at the hotel, and then over dinner,
joined by our now 4-year friends, Zak Rossbach and his dad, Gary. We’d
“met” via BMT Talk Listserve at the time Zak and Travis had their
transplants (about a week apart – different states) – and we’ve
corresponded (and met in person once) since then. It was surreal to be
enjoying dinner out – with Marge, Debbie, Zak, Gary and our boys. I kept
taking deep breaths just to soak it all in – while the 3 boys just chatted
like it was dinner at a great restaurant! The full health and “normalcy”
of our boys – how amazing!
The next morning, our activities with The Marrow
Foundation (TMF) and the National Marrow Donor Program (NMDP) began. In
honor of the NMDP’s 15th anniversary and TMF’s 10 year
anniversary – and the almost 15,000 transplants that have been made
possible by these organizations, a morning ceremony and press conference
was held on Capitol Hill. This event was to thank and honor Congressman
Bill Young (FL), Chairman of the House Appropriations Committee, for his
vision and determination some 15 years before, as the founding driver of
creating this national registry – the NMDP. Against much criticism and
discouragement from other politicians and even medical professionals at
the time, Congressman Young held fast with his belief that indeed, people
would be willing to be entered into a national registry to help save other
people’s lives. At the time, people said he’d be lucky to ever get 50,000
people into the registry. And here it is, 15 years later – and 4.8
MILLION people are on the NMDP registry – and there’s no stopping now. At
this event were approximately 20 donors and 20 transplant recipients – all
present to graphically represent to Congressman Young and others on
Capitol Hill (and TV viewers of CSPAN, as this was filmed and supposedly
televised) what a difference their support has made in so many people’s
lives. Our family was invited to sit with Marge and some of the other
hero donors and recipients on the dais behind Congressman Young as he and
a number of other Congress colleagues spoke in support of this cause. The
speeches, including those of an articulate and passionate young BMT
survivor and her donor, were moving beyond belief. Marge and I kept
looking at each other – our eyes streaming tears the whole time. (How
COULD I have forgotten to bring tissues to this event??) I don’t know
that I’ve ever been so deeply touched as on that day – the enormity of
that reunion of donors and recipients. The enormity of how one person’s
selfless act can not only save one life, but impact so very many others in
unforeseen ways. I’m choked up just thinking about this.
After the draining and exhilarating event (in the
House Appropriations session room) – and hearing several Representatives
commit their support to continued funding of the national registry and
transplant research – we moved on to lunch and briefing before the
afternoon of “working the Hill”. What a hoot! Travis was dressed like a
little CEO, in his suit and tie… Spencer decked out in his favorite dress
clothes… and we all scrambled around from building to building and
appointment to appointment, meeting with one Illinois Congressional
Representative (Congressman Crane, who is firmly in favor of supporting
this cause as well), 3 others’ Legislative Assistants and one Senator’s
Legislative Assistant. We tried as best we could to quickly share our
story – and the importance of their ongoing support of the national
registry and ongoing research. And generally, everyone “got it”, in a
heartbeat. How could they not, with these sweet two boys sitting together
with our life-saving donor, Marge? It was a learning experience for these
boys (and us adults as well!) like we could never have imagined. Who’d
have thought that our boys would be such helpful spokespersons to save
others’ lives? I’m so very proud – and grateful.
As if that weren’t enough of a tear jerker and
awe-inspirer… we quickly got decked out in “beautiful people-wear” and
enjoyed a magnificent evening, again honoring Congressman Young, at a TMF
fundraiser/Gala at Union Station in DC. It was so fun to have Marge with
us (and Debbie, who is a beautiful person – and now a huge proponent of
getting into the NMDP registry with everyone she meets, all of us dressed
to the nines for this evening, with Marge and other donors being
celebrated in such a special way. The boys made it through all the
mingling, speeches, honors, hugs, tears and pictures with such sweetness.
Marge, Joe and I were beaming with pride at these boys – still best
friends, after all this time. Best of all, this celebration raised almost
$2 million dollars to support the NMDP in saving more lives.
As you can imagine, I felt like we’d been through
the wringer, given all the emotion of Travis/Marge’s 4 year anniversary,
let alone our reunion and these events. Nonetheless, even after Marge and
Debbie had to leave that next morning, Joe and the boys pulled out the
afterburners and went sightseeing while I attended the full-day Board
meeting for the NMDP. As always, this was a most stimulating and
productive meeting – with incredibly diverse and professional
representatives present – all with the shared intent to save more lives.
Believe it or not, we even squeezed in a few hours
visit with some local and favorite cousins before pouring ourselves into
our seats on the plane, totally fulfilled and exhausted. Words can’t
come close to describing our experience and emotions from these intense
few days. Suffice it to say that each day I’m filled with gratitude and
awe at our amazing fortune – Travis is alive today because of Marge’s gift
– and the dedication of so many incredible professionals. And tomorrow,
we celebrate Travis’ double digit day. How cool is that?
Thank you, everyone. Thank you for your ever-present
prayers, care and concern. We’re so glad we can be that beacon of hope
for so many families on this same journey. Thanks for being there with us.
Love, hugs and hope,
Melanie
P.S. Check out Washington DC pictures at
www.keeptrying.com!
Check out TMF at
www.themarrowfoundation.org
Check out NMDO at
www.marrow.org
AND stay tuned for more information on
SuperSibs!, to honor, support and recognize siblings of children
diagnosed with cancer. Soon to come on
www.supersibs.org |
