Recently my 14 year-old son, Cecil, attended his class trip to New York City and Washington DC. While this sounds like a typical milestone for many teens, this trip and the preparation for going on the trip, were anything but typical.
Cecil Has Hemophilia A and Autism
You see, my son has severe Hemophilia A and autism spectrum disorder. He was diagnosed with Hemophilia A when he was just two days old. It is a rare bleeding disorder in which the blood does not clot properly. Excessive bleeding or even internal bleeding can happen.
Soon after he was diagnosed, Cecil started getting factor infusions three times a week to prevent bleeds. He had surgery to put in a port because his veins were not easy to stick. This was great because it kept us from having to make extra trips to Cincinnati Children’s for routine treatment. When Cecil turned 7 years old, I learned how to give him these infusions in his vein. However, we had quite the learning curve to overcome! Because he has autism, he had difficulty understanding what was going on. I worked closely with the nurses in the Hemophilia Treatment Center (HTC) to find the right mix of strategies. He needed a routine to make him feel comfortable: same time, same room, same site. And I needed to learn the right techniques.
Cecil Wants To Attend Class Trip
Fast forward to the beginning of Cecil’s 8th grade year. His school was planning a trip to take students to NYC and DC, two cities that Cecil had never been to. In fact, Cecil hadn’t been on any trips before. I’m certain that this fueled his desire to go. Through his school, he began selling candy bars as a fundraiser to earn enough money to go. He didn’t tell me this, of course, because he didn’t think I would let him. Parents weren’t allowed on the trip, and I’m the only person who can give him his infusions.
Eventually, Cecil told me about what he had been doing and his eagerness to attend the class trip. He sold the most candy bars out of his entire school! On one hand, I was so proud of him, and I wanted him to be able to experience new things. On the other hand, I didn’t know how it would even be possible. How would he get his infusions? What would happen if he got hurt?
Things fell into place
I soon learned that the school nurse would also be attending the field trip. Things began to fall into place after that. She reached out to me and we talked about what would need to happen for him to be able to go. He’d need someone there who knows how to infuse his factor. He’d need a plan if he got hurt. Someone would also need to remind him to stay calm. He doesn’t process emotions well, so if he gets overly excited or upset, he could accidentally hurt himself.
So his school nurse reached out to the Hemophilia Treatment Center to devise a plan and get trained. I was still nervous, but one of the HTC nurses, Ann, helped me feel more comfortable. She personally trained the school nurse. We’ve known Ann for years, and if she says the school nurse is trained and capable of administering his factor, I knew everything would be okay.
Cecil Attends His Class Trip
And, it was. With an emergency plan in place and a travel letter from the HTC, Cecil attended the trip. I was still a bit of a nervous wreck while he was gone, but I think that was unavoidable. Cecil’s health is always on my mind, and we’ve been on quite the journey to get to his teenage years. I want him to see, learn and experience new things, and this trip was the first step in making that happen.
Our Hemophilia Treatment Center provides comprehensive, multidisciplinary care for children and young adults with hemophilia and other rare factor deficiencies. To learn more, please call 513-517-2234, option 2 or fill out an online form for more information.