Feeling Guilty

Last week, my husband and I took our mighty warrior Caeleb to the hemophilia treatment center so that we could touch base with his hematologist. Caeleb recently had labs drawn, and it was time to sit for a meeting about his treatment.

We were called to the back to have Caeleb’s vitals taken, and a familiar hematologist greeted us. “How are you all? It’s been a long time!” Indeed, it has been. My husband and I thought that our hematologist would simply put her eyes on Caeleb and give him a good once-over.

This day, Caeleb had not a single bruise in sight, except for a couple of small ones under his shirt. He is walking and running and looks fantastic! And he is only 1 inch away from looking at me eyeball to eyeball.

I have no complaints about Caeleb’s treatment, but if there is one drawback to daily infusions, it’s that he is using a plasma-based product that requires us to push 30 ccs of factor through his port. This amount of factor makes it difficult to self-infuse and push the product with one hand. He is 12 years old. This is the age he should be infusing on his own. But the difficulty of self-infusion is the only drawback to his treatment.

The hematologist completely surprised us. She wants to put him on a new product for people with inhibitors: Hemlibra (emicizumab-kxwh). It’s not just a different product — it’s a product that is injected (rather than infused) once a week subcutaneously. Subcutaneously, meaning a shot like a person with diabetes would take in their stomach area, arm, or thigh. My husband and I were speechless for a moment, which doesn’t happen often.

“Really? Are you sure,” I asked the hematologist. She responded, “It will give him a better quality of life, Cazandra.”

As I was about to justify my feelings by telling her that we can’t complain, she pointed to the very large ziplock bag I brought with Caeleb’s supplies for an infusion, and that’s when I got it. It’s not “normal” to stick a needle into your child’s chest every day! I mean, for us it is, but for people in the regular world who are not dealing with a chronic illness, their kids get up in the morning, brush their teeth, get dressed, have a bowl of cereal, and watch a cartoon before the bus comes. There is no 10-minute time period to prep for an infusion and stick your child before going to the bus. Instead of 30 or 31 sticks a month, we would inject a needle four times in a month.

I have dreamed of this opportunity for my mighty warrior. But now that it is here, I almost feel guilty. Guilty because my son has an inhibitor but is not bleeding. Guilty because our insurance is paying out millions of dollars a year for his care. Guilty because if everything is so good, why should we want better?

Caeleb’s life is dramatically changed compared to four years ago because of his infusions. It is like night and day. And if all goes well with this new product, we’ll look back to daily infusions and wonder how in the world we ever thought that life was fine the way it was.

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