Every hemo mom has the day she must send her child off on an overnight school trip, trusting that she has done everything she can to prepare her child for the responsibility of being on their own.
My time came a few weeks ago when my son went to Orlando with his Sing Out Loud (S.O.L to perform at Universal Studios. To be honest, when the school first informed us of the trip I never thought that hemophilia would be a reason he could not participate. Marques is 14-years-old and has been self-infusing for the last 3 years. Sure, I still have to remind him it’s factor day, but, he does the infusions and moves on with life. Although Marques has severe hemophilia A, he hasn’t had a bleed in years, in spite of playing competition basketball over the past 4 years. His disorder is well-managed and he is relatively self-responsible for taking care of his care.
I knew I had to prepare for his solo trip, but I was keenly aware that I could not make this a big deal to my son or to his school. I chose not to schedule a special meeting with his S.O.L Teacher. I completed the permission slip and medical forms and attached a copy of his hemophilia school instructions letter provided by the HTC.
Even though I didn’t want to make a big deal about hemophilia with the teachers chaperoning the trip, I did want to talk to them. After the parents meeting to discuss the trip, I stayed after to talk to them. The teachers had the responsibility for holding and administering all medicine to the kids – everything from Tylenol to allergy pills. However, after talking to them they did not want to hold on to Marques’ factor. They came to their own conclusion that it would be better for him to hold on to it in his room so he had quick access to it. I was relieved, knowing that because he was going to be locked in a hotel room all night with 3 other boys. No telling what type of “rough fun” they were going to get into!
I also had a conversation with Marques. Since Marques would be away from Thursday morning to Sunday evening, he did need to infuse during that time. We talked about what day he was going to infuse. I looked over the trip itinerary just to see what they were doing each day. I knew it would be a waste for him to factor on Thursday, since most of the day he would be on the bus. There is a lot of walking at theme parks and I wanted to make sure he did his factor in the morning before he left the hotel because they were not returning until late in the evening. We also discussed the importance of packing an extra dose of factor just in case. He tried to negotiate a change in infusion days so he could avoid an early morning infusion, but I wasn’t going for it because I wanted his factor levels as high as possible with such a long day in the park.
The morning of the trip I decided to pack up all Marques factor and supplies. I didn’t want to take the chance of him missing something and I had no way to get it to him. Also, he is a normal teenager that would tell me, “Yes, I have it” and then find out the hard way that “No, I don’t have it!”
On the Saturday morning he needed to do his infusion I sent him a reminder text to do his factor. He had forgot! He was already downstairs in the hotel eating breakfast. He told me later that all his roommates had to come back upstairs with him since they had to stay in groups of four. They sat around watching him do his factor. One boy playfully teased him, “Get those drugs out of here!” while the rest cringed as he stuck himself. I love that he doesn’t feel ashamed or uncomfortable in front of people taking his factor and times like this is when it matters.
It’s always difficult leaving your child’s hemophilia care in their own hands for the first time. This was a great step for us, and even though he needed my reminder text the morning of his infusion, I know that in the future he won’t even need those, and someday soon he’ll be able to handle his hemophilia completely independently.
Lovee’ lives in South Carolina with her husband, Charles, and her children, MaRee’ (17), Marques (14), Laithan and Layla (6).
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.