Only one place to go

Only one place to go from here.


We are at rock bottom,  the bottom of the round. No lower to go.

We just finished the fourth infusion of immunotherapy. It was rough. He had an allergic reaction and couldn’t stop screaming in pain. Jacob has now had 16 infusions of immunotherapy and even with the meticulous notes, the hospital takes, no pattern can be found. Each time a different reaction. Each time no ability to predict, to feel prepared, to plan.

What makes it hard is that Jacob prefers to NOT be touched. When having his infusions he doesn’t want anyone to go near him. Watching your child writhe in pain and not being able to hold them is not easy. But we respect Jacob’s wishes. We respect the little bit of choice he has in his life right now.

So we are at the bottom. Jacob has zero immunity, and we got C-diff again (the gift of side effects). And most likely we have a night run to the hospital as he will speak fever.

But I see the light. From here on out, we are on the positive slope of the parabola of treatment. 

Today is the end of the “treatment.” Tomorrow we begin the recovery process.

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  1. Heartbreaking beyond words! You know you are always in our in our hearts and prayers but just needed to say it again❤️

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