Canyon’s Journey to Mayo Clinic

Hi. My name is Betsy…Canyon’s mom!

I know that a lot of you have been following Canyon’s journey from the very beginning…but for those of you who haven’t, here is his story!

At the young age of around 6 months, Canyon went into the hospital for his very first stay and his first round of unexplained fevers. They tested him for multiple things and every test came back negative with no answers as to why his fever was so high and why it was lasting for so long. This is the hospital stay where they found his Pulmonary Stenosis and where we started our journey into the world of cardiology.

Fast forward over the next several months and into years, Canyon is still having unexplained high fevers that reach up towards 106.0 at times. It drains his body completely and usually we end up in the hospital for a couple days with IV fluids and steroids to get him over the hump. His longest run with a fever of 105.0+ lasted thirteen days and the drs at Children’s Hospital tested him for everything under the sun. Every single test was negative. They ended up doing bone marrow biopsies and removed some nodes from his neck. The marrow study came back ok…the nodes were very large. He still gets really bad swollen lymph nodes on the back of his head that actually open up and drain to the outside of his head.

Not long after this visit, they diagnosed Canyon with Periodic Fever Syndrome. Basically unexplained high fevers. They started him on some medicine to help treat it. Today, Canyon has no immune system. The drs say his works in overdrive all of the time trying to keep even the smallest of colds fought off. Which usually puts him down for days. He has a lot of problems with his stomach, and with vomiting and nausea as well! He complains of muscle cramps and is fatigued a lot of the time. Even on Canyons best days he doesn’t feel great. He doesn’t feel as good as a four year old little boy should feel. Often asking me to just let him rest even after the simplest of activities.

The Mayo Clinic in Rochester, MN has been reviewing Canyons case for the last week and they have accepted him into their clinics. His insurance here in MO doesn’t cover any of the cost of his visits or care there. But they believe they can help him and that’s all the hope I needed! He will see general medicine, cardiology, immunology, and rheumatology while he is there. We are waiting on an appointment with immunology to open up so he can see all departments in the first week of his visit there. Our Mayo rep says it will be within the next 12 weeks for sure…hopefully a lot sooner. We have to have his initial deposit paid the day prior to our arrival. I’m asking all of my friends, who I know have already given so much with their prayers and such, to please help me make this happen for my sweet boy! It’s a light at the end of the tunnel for us! I can’t help but believe there’s a dr there somewhere who has seen a case identical to Canyons and will know exactly how to treat him! I have faith God will let our paths cross his!

If you can’t give, please continue to pray for Canyon! For healing, and a diagnosis to help get him set on a path to normal! We will also be doing a fundraiser with Chic-Fil-A in Cape and some baked goods fundraisers as well! We appreciate you all much more than we have words to say! We’re claiming the victory here!!

I’ll keep you all posted on my personal Facebook page of his journey to Mayo! You can add me as a friend if we’re not already!

Again, thank you all so much for all that you’ve done already!