As usual, things don’t always go as planned. I had targeted this past Saturday as the day I was going back to Clinton, OK where I crashed on my bicycle and broke my shoulder a year ago. The plan was to ride the remaining 700 miles back to St. Louis over the course of 8 days. But life got in the way and I’ve had to postpone the ride to start Labor Day weekend instead. The schedule of the ride is now up on www.afathersride.com.
I’m riding for my sons and all the children who have battled and are battling Hemophagocytic Lymphohistiocytosis (HLH). I’ll be dedicating each days ride to a child currently in the hospital fighting this awful immune disorder. I ride because I can. My sons no longer have the opportunity to ride their bicycles down the street. I ride because more awareness needs to be brought to doctors and parents across the country. This immune disorder is in the “rare” category but it isn’t rare at all. It is just “rarely” diagnosed correctly. There are many children and adults who are dying because their doctors think they simply have a virus or are in liver failure. If the patient is lucky enough to have a doctor who has heard of HLH, they’re usually able to narrow the possibilities down to 2 or 3 diseases/disorders. Of those, cancer is usually one of the possibilities and the parent is told that Cancer is the one they want. Cancer gets so much publicity in this country and it is mind blowing to a parent when they’re told that between cancer and HLH, they want their child to have cancer.
But the good news is that awareness is increasing due to the many foundations that have been started in memory/honor of children with HLH. More and more doctors are starting to get it right. The Matthew and Andrew Akin Foundation purchases all the keywords on Google associated with HLH, so newly diagnosed families are finding our website and reaching out for help. The number of families reaching out to us continues to increase and that is a good thing. Because that means the patient was diagnosed correctly, which is the first step.
But even when it is diagnosed correctly, keeping the disease under control can be very difficult. If the correct combination of steroids and chemo aren’t given immediately, the patient can be gone within the first 24-72 hours. That is what makes this disease so unique. It is hard to diagnose and even when it is diagnosed correctly, it is hard to keep it under control to get the patient to transplant. When families reach out to us, we help facilitate getting them in touch with the world-renowned HLH expert at Cincinnati Children’s Hospital. My wife and I spent 33 months at 3 different pediatric hospitals and we can tell you first hand, there is a difference.
When a child with HLH is admitted to Cincy Children’s for their bone marrow transplant The Matthew and Andrew Akin Foundation sends out a $200 Toys R Us gift card to the child. They’re going to be stuck in that room for weeks and possibly months on end so we try to put a smile on their face with some new toys. Kristin likes to tell people to just imagine putting their child in their room at night and not allowing them to leave that room for a month. It really is mind boggling when you think of it that way.
For the second year, the foundation just awarded a scholarship to an HLH survivor who is graduating high school and attending college. Maddison Reaves was the winner this year and she’ll be attending Weber State in Utah this fall semester. Congratulations Maddison!
So, Labor Day it is! I’ll be riding out of Clinton, OK on Saturday, Sept 1st and ending up in St. Louis on Saturday, Sept 8th. Approximately 700 miles over 8 days! Anyone is welcome to come join me on this journey. All I ask is that you try to fundraise for The Matthew and Andrew Akin Foundation. I have someone who will be driving a car along the route to transport luggage and provide support. He’ll also be responsible for getting all of the daily videos uploaded so I can just peddle! I have a friend who has already committed to riding with me on the journey and another one that will ride the last couple of days into St. Louis. You have all summer to prepare!
As I learned the hard way through the deaths of my children, life is short. Enjoy it to the fullest while you can!