We had just driven 4 hours and had an appointment with a pretty amazing team to have all the wind knocked out of our lungs. We came that day as normal parents, ones with hopes and dreams of grandchildren and career possibilities. We left that afternoon as Duchenne parents with a new goal of seeing him graduate high school. Where did we go from here?
With every diagnosis, your first thoughts turn to treatments. So we asked. And we were informed that the treatment options are very limited! There are clinical trials being held but in order to be eligible to be on any of them, we had one obstacle to go through. The approved treatment currently available to Duchenne boys is steroids. But with that treatment comes a lot of scary side effects.
I believe it is a personal decision for all families on the use of steroids. We decided that for our family, that Cade would not be put on steroids at this time. The downside to that is that the only treatment option we have right now is physical and occupational therapy. Cade does aquatic therapy once a week and occupational therapy once every 3 weeks.
The thing I have learned the most in Duchenne is that nothing is ever constant. We pray for stability at our clinic check ups, but even that can include minor changes. The process for diagnosis used to be long, painful and expensive. With organizations such as PPMD, the hope is to relieve that burden for families so research can be conducted and treatments can be found.
There is a fine balance between keeping Cade active and him overdoing it. The phrase “use it or lose it” comes to mind for the reason for keeping Cade active. However, if he overdoes it, his muscles may break down faster. So we focus on energy conservation and remaining positive.
But as a family, we also made the decision to focus on trying new things. Since Cade’s diagnosis, we have added chickens, a large garden, and the farmers market. Cade is hopeful that one day we will add a farm store too for him to run. I asked him about if he will live in the country someday to accommodate all of his loves and he informed me that he plans to live with me for his whole life. He is only 11 so I am guessing that might change someday!
We are heading back out to clinic this week, so I will update with the information we find out there. Plus stay tuned for updates about Cade’s hunt. Cade is so excited for the hunt that sometimes he has a hard time focusing on anything else. Good thing we have a bunch of stuff going on between now and the hunt. Hopefully we can distract him enough that I can just say it is time to leave instead of how many more weeks we have left!