As my adult son moves back home, medicine fills our fridge once again

Reflecting on how my boys' hemophilia medication has evolved over time

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by Joe MacDonald |

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On Tuesday morning of last week, as I sat at my desk sifting through emails and attempting to plan my afternoon, my phone rang. I saw it was Julian, my oldest son, so I picked up the phone and steadied myself for our usual late-morning chat. I said hello in my chipper way, but instantly noticed that he sounded different.

Immediately, I grew concerned and asked if everything was OK. After an awkward pause, he said, “Dad, I have a college education, but I can’t get a job in Amarillo, Texas. This city proved helpful to me for a season, but I think it’s time to leave.”

I could hear him brace himself to ask me a big question. “Dad, can I move home?”

“Of course,” I replied. “Anywhere Mom and I live, you have a place to lay your head. When do you want to move?”

Julian responded, “How about this Friday?”

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I felt my heart skip a beat as I mentally ran through the list of things I’d need to do to get him moved quickly. Could I rent a U-Haul truck on such little notice? Who could help move everything?

While my thoughts swirled with the tasks at hand, I calmly said, “Of course you can. Let me call you back with the details.”

I called Cazandra, my wife, and explained the situation to her. We both agreed that moving home was best for our son. We could help relieve some of his financial concerns as he seeks a job in our area. He’s auditioned for several regional theater companies, but hasn’t heard back from them regarding casting for the upcoming season.

After making a few calls, I secured a truck, some help moving, and a tow truck for his car. I gave him instructions, and he made the big move to Belen, New Mexico, on Friday.

Embracing a full house — and a full fridge

As Julian unloaded his stuff, he showed me a large bag filled with Hemlibra (emicizumab-KXWH), his hemophilia medication. We cleared out a section of the fridge, as the medicine needs to be kept cold.

As we rearranged things, I couldn’t help but laugh at the multiple medications in our refrigerator. In addition to Julian’s Hemlibra, there’s also the Hemlibra for my younger son, Caeleb, and my insulin for diabetes. It seemed as if I could open a pharmacy out of my house!

This thought led me to reflect on the enormous number of factor products we kept in our refrigerator when the boys were small. Sometimes, we had to dedicate two full shelves to hemophilia medication. We often kept an extra refrigerator in our garage so we’d have space to store food.

While our current situation brought back memories of the past, hemophilia medication takes up significantly less fridge space nowadays. Medicines have come a long way from the early days of our boys’ lives, when reconstituting factor involved huge amounts of liquid.

With Julian living at home again, the dynamics in the house have changed drastically. My son is no longer a child, but a grown man capable of managing his bleeding disorder. I don’t know when he injects Hemlibra or schedules annual checkups with his hematologist. Those responsibilities rest on his shoulders.

I know that Julian won’t live with us for long, but I enjoy having him present and part of our nuclear family once again. I asked Caeleb if he likes having his older brother stay with us, and he gave an emphatic yes. So far, they’re enjoying each other’s company and often laugh at my expense. That’s OK. I love the joy that exudes from them. I stand there and soak it all in because it’s my earthly heaven.

The house feels different now as we struggle to accommodate another adult living here. But despite our space issues, we make it work.

When talking with both of my sons, I feel like I should take my shoes off because I stand on holy ground. I know that moments like these don’t last forever, but they can shape the course of our lives. For now, I celebrate a fridge that stores too many clotting products, unexpected phone calls that remind me to put my loved ones first, and incredible gratitude for the fantastic family Cazandra and I created.

To my amazing sons, I say, “Welcome home, but take your shoes off. Whether you know it or not, you step on holy ground in this house. You can stay as long as you like.”

Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


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