On Thursday I was given the opportunity to speak at another charity function. One that was also very near and dear to Rowan's heart...Marrow Match. They held a fundraising event, which was really more like a party or celebration, at the Rock Box in downtown San Antonio. Jason Cox, the founder, a 31 year bone marrow transplant survivor, really knows how to inspire people...and how to throw a party;) His life mission is to "Ignite Life", by educating people about bone marrow/stem cell transplantation and by adding as many of them as possible to the registry. He helped add hundreds of people as we looked for Rowan's match when we first found out we were moving forward with his transplant. Rowan and Jason were buds. Jason is kind of like an older version of Rowan (though he is still a kid at heart)... both funny, both handsome, both dancers, both larger than life personalities, both with a heart to help others and save lives.
When Jason first asked me if I would tell Rowan's story at his "Marrow Match- Fire Ball", I was in the middle of writing my speech for the Ferrari Kids Gala. In my mind, I thought, "Sure, it's something I tell all the time. Even if it's just a few days away, I've talked about the importance of adding registrants to Be The Match a thousand times. I don't even need to prepare a speech for this. I can do this one easy." However, the night before the event, I suddenly got very nervous. I realized, I had better at least jot notes down in case I got nervous and lost my train of thought. Thursday morning (the day of the event) on my way home from taking Ian to school, I started thinking about what I should say that would be most impactful. When I got home, I sat down and started typing my speech on my laptop. The strangest thing happened. I cried for about 30 minutes straight. It was uncontrollable. I just kept feeling like I wasn't supposed to say what I always say, so I deleted the intro I had typed so far. I felt like Rowan was telling me to change it up. I spent the next half hour typing. Really without even thinking about what I was typing. It just spilled out of my fingertips. When I was done, I read what I wrote...and felt such a sense of wonder. Where did this come from? Why was it so different from what I normally start saying? Then I decided that I just needed to trust it, trust the voice inside my head that gave me the words, trust Rowan, trust God. So I did. Here is that speech:
"Usually, when I start talking about Rowan, I start by
sharing how hard his life was. I list
how many medications he took, surgeries he had, days he spent in the hospital,
transplants, etc. Today, I want to begin
differently. I want to begin with how
amazing his life was!
Rowan was a gorgeous red head with the most beautiful blue
eyes and freckles.
He was smart…so smart.
He liked to act and sing and dance. He was in 9 stage plays, a short film, and
did countless interviews on tv about the charities he was involved with as
well.
He raised over $20,000 for Kidd’s Kids, in the first 4 years
following his own Kidd’s Kids trip to Disney World.
He donated thousands of patient and parent gifts to children
and their families in the hospital during the holidays over the years, through
the Rowan Jameson Windham Foundation.
He collected thousands of servings of cereal for hungry
children each summer through Methodist Children’s Hospital’s Annual Food
Drive. So many servings, they renamed
the drive after him and he was named “Hunger Fighter of the Year (for Food)”
last month by the New Braunfels Food Bank.
Rowan played in 3 seasons of soccer, and was a senior orange
belt in Tae Kwon Do, and an aspiring Chef.
He was an honorary member of the Army National Guard, his
proudest achievement.
He was also an honorary firefighter in New Orleans, and an
honorary K9 sheriff’s deputy in Comal County.
Rowan loved his family so much.
He liked to play video games and draw with his brother Ian.
He learned all his theatrical skills from his sister Zoe,
and fake cried every time she left the house or returned home. He wanted her to think he had been crying the
whole time she was away…whether it had been a few hours or a few days.
He liked to box with his Dad, and talk to each other about
how good looking they were. He liked to
say they were twins.
Me, his Mom…I can’t even begin
to talk about our relationship. I
wouldn’t get 2 words in without breaking down.
I didn’t just give him life…we spent every moment of our lives together…
for 10 years. His life, was my life.
Once Rowan learned that we were indeed moving towards a bone
marrow transplant, in the hopes of healing him from his failing immune system,
he had one question for the doctors…”Is there a chance of death?” The room full of specialists in Seattle fell
silent, looked at me, asking permission with their eyes, and I silently nodded
to them. They told him “yes, Rowan, yes
there is”. He thought for a second and replied, “It’s ok. There’s a chance I’ll die without it
too. Every time I go back in the
hospital septic, there’s a chance I’ll die.
I’ll be fine either way.”
So, the doctors began the search for a match for Rowan.
His siblings were ruled out.
Ian was not a match, Zoe had her own autoimmune health issues that excluded
her.
Then we got hit with the news that there were no matches for
Rowan on the national registry...zero.
Everything was back on hold.
We were discouraged…but not Rowan. He just said, “Everybody should have a
match. How do we get more people on the
registry so nobody else has to be without one?”
With the direction and help of some wonderful people, like
Jon with Gencure, Margie from Keller Williams, and of course, Jason here with
Marrow Match…we started holding swab events.
Seattle was moving forward with transplant anyway, with the plan of me
using me as a haplo (or half match) donor.
They were going to use a special new protocol, that genetically modified
my t-cells, but it was new, and came with greater risk than if Rowan had a 9 or
10 unrelated donor on the list.
Still, even as we packed to head out, on what would be our
last great adventure…Rowan didn’t worry about his own chances. He still would ask me, how many did we sign
up today, call and see if they found anyone else’s match yet, etc.
The very night before Rowan and I left in our van to head to
Seattle for his transplant, while swimming with Jon, myself, my son Ian, and
Jon’s son, Rowan told us, “I want to help find a million marrow matches.”
Rowan’s first transplant failed. We proceeded with a second rescue transplant,
another haplo, from his Dad this time.
That transplant was beginning to work.
Rowan had engrafted, he had his Daddy’s healthy marrow starting to
multiply within his bones… but it was too late.
Rowan’s body was too broken…devastated from all the chemo,
radiation, antibiotics and transplant complications he had endured during those
previous 5 months. His kidneys failed,
his lungs failed, and then his heart failed.
Losing your child is indescribably painful.
Knowing that there is nothing you can do to bring them back…heart
breaking.
Losing them while doing something that you had hoped was the
key to saving them... soul crushing.
But I know what Rowan would tell me if he were here. He whispers it to me every day. Sometimes his voice in my head is the only
thing that gets me out of bed…”I told you I’d be ok either way. I am.
Now, go help the others. Find
those million matches.”
Ian, Rowan’s brother and I, along with so many of you here,
are being called to take that seed that Rowan planted June 30th,
2016… in a swimming pool in the Texas Hill Country…”a million matches”, and do
all that we can do in our power, to help it grow.
To ignite life.
To prevent others from experiencing what we did on Dec ember
15, 2016 when Rowan died.
I want to close with this…Rowan dedicated his first day of
chemo in Seattle to fighting in honor of his buddy, the founder of Marrow
Match, transplant survivor, Jason Cox.
He did a crazy dance on his hospital bed and sent a video to Jason
saying “I want to be like you Jason…a fan of life!”
Rowan loved his life.
He was certainly a fan of life.
Thank you for helping us spread the word, so we can add more
people to the registry.
Thank you for being a fan of life!
Marrow Match held a wonderful event. Here are some of the pictures taken with my phone that evening. Once again, there were tears...but oh there was also so much laughter, and dancing, and games, and swabbing cheeks to save lives. Thank you Jason, Marrow Match, all your volunteers, all your friends, all the attendees, bartenders, photographers, sponsors, contributors, etc.
The ONLY thing missing Thursday night was Rowan...but I know he was there in spirit and so, so, proud of all you are doing Jason.
This was a group art project that night. I chose to color in the two rrs, for Rowan, or RoRo as he was known by to some very special people in his life:)
"Together we are stronger" (that goes for you too Jon, Adrianna ~not pictured, Margie & Kenna)...and I believe that we will hit that million one day!
Myself, Kenna (former donor and fellow speaker at the event), Jon Hudson (Gencure)
Margie Beecher (Keller-Williams & bone marrow registry advocate!) and myself
Jason Cox (Marrow Match Founder) and myself
And the most important photo of the night...
a group picture of the folks who swabbed that night (at least at that point...there were more later), adding themselves to the national bone marrow registry...adding themselves to that 1 million Rowan dreamed of adding!
***If you have not done so yet, and you are between the ages of 18 to 44, please take 10-15 minutes of your time to complete the form and swab the inside of your cheeks. You could be the cure for someone! As I also said that night, if Rowan had had a "Kenna" (former donor), he just might still be here with us.***
