4 Years Post BMT
09/22/02
Dear Family and Friends,
First, for those of you who like
the short version and then skip to the end, please know that Travis is doing
GREAT!!! And there are new pictures on www.keeptrying.com!
Hugs and gratitude to you
all. Love, Melanie
(-:
The full journey: I’m overwhelmed as I type, looking out the
window at these two, amazing growing boys – sitting in the sunshine “working on
their bikes”. Yep, Travis and
Spencer. This past week, we celebrated an incredible milestone – 4 years from
the day Travis got his second chance at life.
That day, September
17, 1998, was the day his hero donor Marge gave him the gift
of life. I remember, back then, having so much
difficulty just pulling through, waiting for a donor match, pre-transplant
procedures and then to the first 100 days post transplant – the most critical
time of all. The hours were like years. And now here we are, with Travis and Spencer,
strong, healthy, happy and kind growing boys, fully partaking in life’s joys as
kids – in 4th and 3rd grade respectively. And believe it
or not, they’re still BEST FRIENDS! (-:
Every day, I’m contacted by
families who are struggling through the horrific nightmare of pediatric
cancer. And the best gift I can offer
them is that beacon of hope – the image of Travis – a living miracle – so they
can picture their own child in the future with that same miracle survival.
Holding onto that hope is so important.
I can hardly believe our own fortune as I tell these people who are so
shell-shocked and exhausted, that Travis now takes only a multivitamin each
day! Actually, he does take 2x a day PredForte eye drops for post cataract
surgery, as well, but that’s it. (For the “cancer families” reading this – do
know that Travis had cataract surgery on each eye – and then needed “Yag Laser”
procedures TWICE on each eye over a few month period, to open up the membrane
so he could see clearly again. This Yag is a SIMPLE procedure. 3 minutes in a chair – no pain or invasive
procedures. No sedation. Just like
looking into a little laser light, I think. Then clear sight! His eyesight
isn’t perfect, but he can read fine and his wonder-doctor said all he needs now
is a few years on him, as he’s ready to pass the driver’s test with this
eyesight!). It’s so humbling and
important to remember that SO many people are still in this struggle. We have
to keep fighting to find a cure. And keep insisting that people of all
backgrounds and ethnicities get into the National Marrow Donor Program registry
(www.marrow.org or 1-800-MARROW2).
We’re so excited, as this week we’ll be celebrating
the 4 year milestone WITH MARGE in Washington DC! We’ve not seen
her for about 2 years now, so it will be a powerful reunion as she sees the
gift she’s given us all. We’ll be participating
in activities with The Marrow Foundation and the NMDP on Capitol Hill, raising
awareness and support for marrow/stem cell transplant funding and research, as
well as attending an exciting fundraiser that evening celebrating the
anniversary milestones of NMDP and The Marrow Foundation. Over 15,000 lives
have now been saved by these organizations.
We can’t WAIT to see you, Marge!
Another exciting milestone –
the Ronald McDonald House in MKE (our “home” for 4 months during transplant)
had a big event to launch fundraising for their newly approved Long Term
Care/BMT wing – SO necessary to help these special families. We were so thrilled to attend, as I’d
participated on the committee and was overjoyed to know that finally, the huge
undertaking has been approved! It was a
lovely evening, back with our RMH “family” and friends – and even one of
Travis’ doctors was there to celebrate with us. We love you guys. (-:
Actually, it’s been an
emotionally draining week. I’d stopped
into the hospital Hematology/
Oncology/Transplant (HOT
Unit) floor to drop off a 4 year thank you card and picture of Travis (BOTH
boys had colds, so they couldn’t come into the hospital OR the RMH!). As I walked down the hall to the unit, it was
such a chilling feeling as I saw the drawn, frightened and driven faces of the
BMT parents quietly going in and out of their children’s isolation rooms. It’s SUCH a draining journey. I so pray for strength for them and full
recovery for their children. I watched
the nurses scrambling around from room to room – and it again reminded me how
amazing they are. What they face, day in and day out – the heartbreak, the
“art” of caring and treatment as well as the “science”, the parental fears, and
the demands on their own stamina -- their commitment is unbelievable. It was a very humbling visit. I’m so glad I could bring up Travis’ picture,
to help them all remember how they ARE helping families pull through this.
On this 4-year BMT
anniversary date, we were deeply touched again. 4 ½ years ago, we met a family
at a local marrow drive promotion event, (we were all being interviewed for a
TV public service announcement). This family had just seen their young daughter
through BMT for Fanconi’s Anemia and they knew that their other two children
would need BMT’s for this as well. So
now, on the same day as Travis’ 4 year milestone, the oldest son, Jordan, was
receiving a stem cell transplant from his father. It was their last hope, after Jordan’s body had rejected the first two transplants he’d
received. I’ve never been so moved as I
was after spending time with Jordan’s parents that next day. They didn’t complain or
whine ONE bit about the challenges they’ve faced with their children. They were
resolute with their commitment to do all that they could to help their children
survive. The never stopped to ask why –
or feel victimized. They just focused on choosing to move forward and feel
positive. I just broke down sobbing as I
left them. I’d never seen such strength
– and desperate hope. Then, just 3
nights later, I got word that Jordan passed away.
This beautiful 17 year old child is now gone. I can’t begin to imagine how this family is
able to put one foot in front of another – and go forward -- sometime soon
bringing their youngest child to transplant and continuing to help their
daughter thrive now, as well. Yet they
will. They’ll do all they can to give their children this chance at life. Honestly, I think it’s SO important for us to
remember how very, very important it is to continue the funding, continue the
research, and continue the prayers for all these children and families who are
being sucked into the vortex of this nightmare. Please keep Jordan’s family in your prayers. And picture the smiling face of this boy –
who fought will a laughing spirit and a sweet heart.
The other milestone this week
was, fortunately, a delightful surprise. Travis, Spencer and I went to greet
the 5 Points of Life bicycle team, as they came through Hoffman Estates, IL on their way cross country from Canada to Florida. This team of riders represents all aspects of
marrow/stem cell transplantation, organ donation, blood donation,
platelets/plasma donation and tissue donation.
It was immensely inspirational to cheer for this team as they rode in to
the donor center parking lot and greeted all of us with their stories and
commitment. They’re giving speeches and press conferences all along the way –
to raise commitment and participation in these 5 life saving points of life. We met and instantly bonded with Tony and his
teammates, Gary and the other amazing riders, who have committed 7
weeks of their lives to help save other people’s lives. It was incredible to be
with them and share our 4 year victory inspiration with them as they prepared
to meet their next miles that day. Check
out www.aabb.org or www.lifesaversusa.org to cheer these
heroes on as they come through your area!
Eeek -- a long update (less
frequent from me now, but more catch-up each time)…a few last things for now…
In June, Joe ran the San Diego marathon with Leukemia-Lymphoma Society’s Team In
Training program (his 2nd one).
It was so fun to have the boys there, cheering him on. And he did it in 3
hours/53 minutes! I was so relieved to
be cheering on the sidelines for this one! Joe was really pleased at his results, and at
being able to raise over $9,200 dollars to help find a cure (thank you,
Gateway!). Me -- I’m taking a break from
TNT marathoning for right now – but am committed to encouraging others
to give this life-altering program a try. My friend Donna stepped up to the
plate and did a stellar TNT Triathlon event!
She was amazing. Our family
worked the event, and we got to cheer so many TNTers on as they hauled their
buns through this intense event in Chicago. Joe and Donna
were the big hero athletes this season!
OK, the last news. Many of you have asked what’s the latest my
work these days. Yup – made the BIG leap
a few months ago, leaving my corporate position at Carlson Marketing
Group. I’ve known for a long time
that I’m supposed to be using my life in a different way… so I finally stopped
dousing the flame within and made the change.
And am having a BLAST. Doing two
things: 1) I’ve formed my own consulting
firm -- Leadership Legacy Group.
Important work with great alliance partners and clients. Even worked for
several days in Israel during that first month. It was a fabulous trip. AND 2) I’m launching
a nonprofit organization called SuperSibs! -- to honor, support and
recognize siblings of children with cancer. Watch for more information
(website coming soon and links from Travis’ website as well) – but know that
this will eventually be a nationwide endeavor – to help these siblings feel
valued, validated, important and special, as their family is faced with
fighting pediatric cancer. Of course,
Spencer has been a major inspiration for this – and research and sibling
interviews have validated the need a hundred times over. As I tell people, right now one effort
(consulting) puts money in my pocket, while the other effort (SuperSibs!—where
my heart really lies) takes it out! I am
feeling tremendously fulfilled by this – and have every confidence it will make
a big difference to round out the family healing needs. Please contact me for
more info or to lend your support!
So that’s it – the BIG
scoop. We are committed to thanking all
of you for your love, kindness, prayers, positive attitudes and support by
“giving forward” ourselves. Thank you,
thank you, for being there. Thank you for these 4 ½ years since our journey
began.
With love, hugs, hope and
prayers (and wishes for a GOOD new year),
Melanie (and Joe, Travis- 9,
and Spencer - 8)
P.S. And if this isn’t enough,
watch for more pictures and an update after the DC trip with Marge, next week!
www.keeptrying.com
– check out the new pictures in the meantime. BOY have we come a long way! (-: