Infusions are a priority when we’re making holiday plans
It's a busy season, but enzyme replacement therapy takes precedence
It’s no secret that the holiday season is a busy time for everyone, but imagine having to incorporate a 6.5-hour infusion therapy into the mix of it all. That’s the case for our family because my 6-year-old son, Cayden, has infantile-onset Pompe disease. While planning everything out can be stressful, I’ve gotten the hang of it now that I have a few years of experience under my belt.
Cayden has been receiving these infusions since he was just 4 weeks old. Currently, enzyme replacement therapies are the only treatment options available for people with Pompe disease. There are a few of these on the market now, which is phenomenal.
The medication Cayden receives is Nexviazyme (avalglucosidase alfa), which is administered biweekly. However, until the age of 4, Cayden received a medication called Lumizyme (alglucosidase alfa), which was administered once a week. That might not seem like a big difference, but it certainly is!
Putting together a schedule
With the holiday season approaching faster than I could’ve imagined, it was time to figure out Cayden’s infusion schedule. He typically gets his infusions on a Tuesday, which works best for his home infusion nurse. Today is his scheduled infusion day, which means we don’t have to worry about anything interfering with our Thanksgiving plans.
Our family has already decided to do our Thanksgiving meal tomorrow, instead of Thursday, because of everyone’s work schedule. I plan to help my mom prepare, cook, and bake everything. So when Cayden’s infusion is finished today, we’ll head up to Mom’s house so I can help her get all of the prep work done.
As if this week weren’t hectic enough, my 23rd birthday also happens to be on … Thanksgiving Day! While I don’t have any extravagant plans, I’d like to go on a date night or something similar this weekend because I don’t dare brave the Thanksgiving crowds.
Once Thanksgiving calms down, we’ll have to worry about the infusion schedule for Christmas and New Year’s. In addition to that, my youngest son, Kyree, turns 2 on Dec. 28 — smack dab in the middle of it all. And, to top it off, the home infusion nurse who usually administers Cayden’s therapies will be on vacation that week, which is when his infusion is due.
Her vacation is well deserved. She’ll be heading to California to spend the holidays with her son and his family. Thankfully, she planned the trip ahead of time and let her nursing agency know. They were able to get another nurse to fill in on Dec. 23, the day before Cayden’s infusion is due.
That works out better for us anyway because it leaves our schedule open for Christmas Eve, so that we can spend the day with family. There have been times when we just couldn’t move things around, and Cayden had to get his infusion on important days like Christmas Eve or his birthday. Nobody wants to miss out on holidays, although we sure do our best to plan around them. But that’s not always possible, which is OK.
Thankfully, Cayden is such a good sport and just goes with the flow. We both realize that his infusions are necessary, whether it’s the holiday season or not. We always find a way to squeeze them into our schedule, even if it makes for a busy day. And after all, whose holiday season isn’t busy?
Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
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This blog beautifully captures the challenge of balancing essential infusion therapy with the holiday season. The way the author adapts and plans around these necessary treatments while embracing family time is inspiring.