The Road Trip of My Life

Sean-Ryan-Car

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

If you have questions, or would like to request an appointment, please contact our HLH Center of Excellence.

Sean Feltoe

About the Author: Sean Feltoe

Sean is a college student studying for an undergraduate degree in criminal justice with plans of becoming a youth parole officer. He coaches youth soccer and plays guitar regularly with his band. He is also a Cincinnati Children's patient who fought and survived HLH and is now working to spread awareness of the disease and bring attention to the importance of bone marrow donation.

Write a comment

Your data will be safe! Your e-mail address will not be published. Also other data will not be shared with third person. Required fields marked as *

Comments

  1. Carrie April 26, 08:54
    What an uplifting and inspiring story! Thank you for your interest and dedication to sharing your experience with others.
  2. Shannon April 26, 16:52
    I would love to watch your documentary once it is complete. My son was diagnosed with HLH at 3 months old and received his bone marrow transplant on August 31st, 2012. He was also treated at Cincinnati Children's. Your story is inspiring and gives me hope that my son will beat this awful disease and grow up to share his story, like you have, to raise more awareness. I wish you the best.
  3. Tammy Zimmermann April 28, 00:53
    Your story is amazing!!! Thank you so much for taking the time to take this journey and filming the documentary as well !!! There are so many in our Histio community facing these same issues you survived thank God that will be so inspired by your story!!! God bless you
  4. Sue April 28, 08:29
    YAY YOU!!! I am so glad you are well!! Thanks for making a film ....awareness is so important! My 12 yr. old son has had HLH for 2 years now~~he's doing well!! Thank you...Thank you !!! Sue
  5. Jody Scarnecchia April 28, 17:02
    What a wonderful outcome for such a dreaded disease!! Thank you for spreading the word and may God Bless You each and everyday!! My grandson, Preston is an HLH survivor after a liver transplant. We too have been blessed with a miracle! Take care!!!
  6. Panne-Marie August 08, 10:29
    Hey, Great news. Our daughter Megan is 17 now but was 16 when diagnosed with HLH she Is doing well. We in England are somewhat behind the States on HLH. We're you given any advice on prevention etc... Hope you don't mind me asking.. Best Wishes, Anne-Marie
    • Kate Setter
      Kate Setter August 09, 12:12
      Hi Anne-Marie - I will make sure Sean sees your question and will also ask our HLH experts here and will get back to you.
  7. RIA April 12, 10:46
    May i pls ask if HLH always presents wt high grade fever? or can it be without fever?
    • Kate Setter
      Kate Setter April 24, 16:50
      Hi Ria - Fevers related to HLH are complicated. There isn't a clear-cut rule one way or the other and a diagnosis is based on several clinical elements. If you'd like to speak directly with one of our HLH experts, they would be happy to help you. The best way to reach them is to send an email to HLH@cchmc.org and someone will get back to you.
  8. Mike Walsh September 04, 23:51
    Hey Sean, Great article. As a fellow HLH & BMT survivor, I can agree with how horrible HLH is and how lucky we are to have a second chance. So glad to hear you're doing well and that you make time to give back to Cinncinnatti and HLH awareness!
  9. CB dad March 22, 17:15
    This is so great. I'm the father of a beautiful young nurse that lost her battle with HLH. She would have been 25 the next day. God blessed us with beautiful pictures, songs and memories. This disease is terrible and awareness is such a needed thing. We had a young lady in our church that was diagnosed with HLH just after my daughter passed. She went through a terrible battle but won. My blessings and prayers for all those that face this battle. It is win able. FIGHT FIGHT FIGHT