A road trip from Toronto to Sacramento by way of Calgary, Minnesota, Dayton and Cincinnati is certainly not the fastest route to take, but then, my trip wasn’t about making time, it was about taking time to honor the fight of my life and thank a selfless donor, without whom, I wouldn’t be alive to tell this story.
Hemophagocytic lymphohistiocytosis. It’s a mouthful. It’s much easier to just call it HLH. And, it’s a doozy of a diagnosis.
I was diagnosed with HLH when I was 18. The symptoms first looked like a bad case of the flu, but the doctors at the hospital close to my home outside of Toronto, Canada quickly realized something else was going on and transferred me to an excellent children’s hospital where after almost a month a diagnosis of HLH was made. It’s a tough diagnosis. The symptoms are actually fairly generic initially and look like any number of other conditions. I’m actually lucky that I was diagnosed as quickly as I was; many kids don’t survive the time it takes to make a diagnosis.
Fast forward eight months. Three rounds of chemotherapy were unsuccessful at stopping the progression of my HLH. I was sicker than ever before and I was out of options in Canada – my last resort was a stem cell transplant, also known as a bone marrow transplant. My doctor wanted me to have the best shot at beating this thing and sent me to Cincinnati Children’s and Dr. Michael Jordan.
My mom says Cincinnati Children’s is one of the best hospitals she’s been in for anything. And for HLH, it is arguably the best hospital in the world. The program sees more cases of HLH than any other center in North America and has one of the largest bone marrow transplantation programs in the U.S. The care I received during my six months in Cincinnati was exactly what I needed to beat HLH.
Now, please don’t take that as me saying it was easy. Nothing about fighting HLH was easy. And one of the hardest pieces of our journey was the news that nobody in my immediate family was a bone marrow match – meaning the doctors would have to look to a marrow donor registry for a potential match for me.
There was one. Only one. One person on California had taken the steps to generously become a bone marrow donor and her genetic make-up was close enough to mine that my doctors were confident in proceeding with a transplant. I am grateful every day for her decision to join the registry.
I remember on transplant day the nurse bringing the bag (of stem cells that had been extracted from the bone marrow) and me looking at the bag and thinking, ‘There’s my life right there.’
And it WAS my life, that transplant saved my life. That donor saved my life. The experience and expertise of Dr. Jordan and his colleagues saved my life.
Last summer, my friend Ryan and I decided to take a road trip across North America to visit some people and places that were so much a part of my HLH treatment and recovery. Ryan’s passion is filmmaking and he brought a video camera with us on the trip. As we talked about what to shoot along the way, we realized that we were creating a documentary about HLH and the importance of bone marrow donation.
Our trip took five weeks. We traveled more than 7,000 miles. We stayed with friends I’d made during my time in Cincinnati, we visited my caregivers at Cincinnati Children’s and we met the donor in California who gave me a gift for which the words ‘thank you’ will never be enough.
We have tons of footage of the trip and are making a trailer for our film with direction from a documentary filmmaker who has agreed to help guide us. Our next step is to apply for funding so we can continue with the editing process and do whatever needs to be done to finish the film and get it out there to help spread awareness of HLH and the importance of bone marrow donation.
If you would like to learn more about bone marrow donation or are ready to become a donor, Be The Match has all of the information you need. A simple swab on the inside of your cheek is all it takes to become a donor – please consider doing it. One particular woman made that decision and it saved my life. You could be that person for someone.
In September 2013, Sean first set off on another road trip, this one on a bicycle, with the destination being Cincinnati Children’s. He rode in 2013 and again in 2014 with Justin Akin of the Matthew and Andrew Akin Foundation, and other people whose lives have been impacted by HLH. A documentary was created during the ride, including interviews with all of the families involved. The result is nothing short of stunning.
You can watch the full-length (26 minutes) documentary here: http://youtu.be/52adKOxZ8u8