2023 SOL: 4 fever free

It was about two years of tracking fevers and cycles, forty fevers, and I cannot even tell you how many bottles of Motrin and Tylenol. Sleepless night were a given and he practically lived in our bed.

McKenna caring for George during one of his fever episodes

George’s PFAPA scared us. We didn’t know what it was. Our doctor didn’t know what it was. But then someone did. And although the treatment was pretty straightforward, Covid made it difficult.

One of his higher fevers. He regularly hit 105*+

One year ago today, George had surgery to “take his fevers out”. He remembers very little except eating jello at the surgery center, getting to decorate a super hero cape, and eating a chicken nugget when he got home. Or so I thought.

George the day of surgery surprising us all with ZERO pain and a good appetite

Today he asked me if his fevers were ever going to come back. He asked what IF they come back. I hadn’t realized that was something we worried about. He’s grown so strong and healthy since his surgery. He has a big personality. He plays hard and loves hard. He’s my cuddle bug. He comes into my room each morning to snuggle with me. He still wants to be held and sung to at night before bed. And he must say, “Mama. I love you.” A hundred times a day. And during all those times, he’s never once mentioned being concerned about his fevers returning.

So imagine my surprise when he asked after we told him it was his one year anniversary. I reassured him that the doctors took those fevers out and they were never coming back. But…what if? I think it myself sometimes. I would be devastated to see him as fragile as he once was. It broke my heart before and it would again if they returned.

But over a year fever free and we have to assume he is in remission. He has been released from regular visits to the pediatric rheumatologist. He had his last followup with the surgeon 6 months ago. As far as the doctors go, he’s cured. So I will continue to reassure him…and myself.

He is fine. He is healthy. He is thriving.

George. Happy. Healthy. Strong.
I am writing for the 16th annual Slice of Life challenge presented by Two Writing Teachers.
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6 Comments

  1. I know we have talked about this before. My daughter didn’t have pfapa, but might as well have because she had the periodic fevers and other symptoms as well. I can emphasize so much. It takes such a mental and physical toll on everyone. I get the fear though. I still have it. My daughter still remembers some of it (hers ended around age 4 and she’s 9.5 now) and she still asks about it. Unfortunately, through all the testing, we found out she has decreased functioning natural killer cells, so she continues to get sick A LOT. So just like when she was a kid, she keeps asking why she is sick all the time. Sigh.

    Anyway, I am SO glad he is fever free!! What a relief it must be for you.

    Liked by 1 person

  2. Wow, thank you for sharing your story. I’ve never heard of pfapa. With two toddlers of my own, I think I can understand how scary it was and would be to consider the what ifs. Here’s to thriving! 🤎

    Like

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