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Posts in category Matthew and Andrew Foundation

The Ride Starts Labor Day Weekend!

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!

Back in St. Louis

Dodging tornadoes along the way, I made it back to St. Louis safely.  I went to see an Orthopedic Surgeon who said I don’t need surgery on my shoulder and that everything should heal in 6-12 weeks.  My arm will be in a sling for 3 weeks and then I’ll start physical therapy.  Walking is getting a little easier each day but my left leg is still pretty sore due to the deep contusions.  The road rash on the left side of my body is healing quickly.  The deep gash in my elbow is causing me the most pain.  Thankfully, after having taken our children through four bone marrow transplants, my wife is a wonderful nurse.

I was supposed to be riding my bicycle into St. Louis tomorrow.  As some of you are aware, I was scheduled to throw out the first pitch at the Cardinals vs. Giants baseball game tomorrow night.  Unfortunately, that opportunity is being postponed.  I’m just not healed enough to get that done right now.  I’m sorry for those of you who bought tickets to the game just to come see me.  Hopefully, I’ll be able to get it rescheduled with the Cardinals.  Thank you so much to everyone who was coming out to support me.

This crash has messed up so many planned events.  I hadn’t crashed on this bike before and the possibility of it happening during this trip truly hadn’t crossed my mind.  As Matthew would say, “I betcha didn’t see that one coming.” No son, I didn’t.  Thank you to everyone who had worked to set up media opportunities along the way and who had planned to come out and see me on the route.  Also, multiple people offered to finish the ride for me.  Thank you so much but this is my ride I have to do it for my sons and all the other children out there battling HLH.

The first step is to get healed and then to get back into riding shape.

Once again, thank you so much for the support!


Broken shoulder – my ride is over

Unfortunately, things didn’t go as planned. I was 85 miles into my 86 mile ride yesterday when a pickup truck and I were in the wrong place at the wrong time together. He wouldn’t go around me so I sped up to get out of his way. At one point, I took my left hand off my handlebar to look at my directions and confirm my upcoming right hand turn. I then hit a huge dip in the road that sent me flying. If he had just gone around me, I would have been going a lot slower and wouldn’t have been on the very edge of the road. I know I would have missed that big dip. The cowboy in the truck stopped and told me that I was doing 30mph and he kept saying that my left hip looked like hamburger meat. Needless to say, that wasn’t helping. An ambulance was called and I was taken to the hospital in Clinton, OK. I have really bad road rash on my left knee, hip and elbow. They decided to not stitch up my elbow because it is such a bendable area. The people on the scene thought that my bone was sticking out. An X-ray was taken of my shoulder which confirmed that it is broken. X-rays were also taken of my left hip and my femur. There isn’t any skeletal damage but probably a lot of soft tissue damage. I truly can’t even walk right now. With the amount of pain I have in my left leg I’m surprised that something isn’t broken. I spent the night in the hospital and I’m still here right now. I’m hoping to get out within the next few hours. They have me on some pain meds and told me to go back to St. Louis and see an Orthopedic Surgeon about my shoulder. I would love to continue biking but know it wouldn’t be safe. My arm is in a sling and if I can’t hold on with two hands how am I going to hold on with one? If I can’t walk, how am I going to pedal another 1,033 miles. I have Kristin and Will to think about and need to remain healthy for them.

Thank you so much for all the support and prayers. I was having the time of my life out there. Being in the middle of nowhere and pedaling for my sons was very therapeutic. Seeing the countryside on a bike was amazing! Many times, Matthew’s funny sayings would pop into my head as I was going down the road. Yesterday, I had to ride through an underpass of the highway that had thousands of bats flying around. There was no way around it! Matthew then popped in my head saying, “betcha didn’t see that one coming.” No Matthew, I didn’t see the tunnel of bats coming. I loved getting chased by the dogs running from the farms. I would always turn and yell “not today boys” as I would hammer down on the pedals and pull away. I truly felt like a kid again.

One of my goals with this bike ride was to show other parents who have lost children that they can get through it. They can go do good things in the memory of their child or children and help others. I’m not done. I’ve already been online scoping out other bike rides. My sons never gave up and neither will I. More than likely, a child somewhere in this country today is being told they have a form of Histiocytosis. I have to ride for them! Hopefully, everything will continue on just a few months down the road. Thank you so much for all the support. It has meant a lot to me and helped more than any of you will ever realize.