A week ago, Julianne started a new medicine. It’s in the final testing stages needed to have approval for the general marketplace. We don’t know if she has the real thing, or if she has a placebo. We’re trying it out, testing it on her skin, looking for proof that it does what it says it will do. If it doesn’t, the assumption is that she has the placebo.
It definitely feels experimental. The recording of pain and itchiness. The re-application every day. The hopeful leap of my heart every morning as I unwrap her legs from their dressings, looking for a miracle. It’s not a stretch to say I have a lot riding on this. SHE has a lot riding on this. These 90 days of daily applications and daily bandage changes is certainly rocking our world, and I hate the thought that she might be doing this for 90 days of placebo.
I wonder at times if I have too many eggs in this basket. If I do, it’s only because we have tried SO many different things to help her in the past year, all with little to no result. What if this DOESN’T help her in the same way it helps others? I want so badly for it to alleviate her distress. The only reason I consented to her participation is because the itching she experiences has just gotten beyond what I could watch. I had to do something, I had to say I had at least tried to help her find relief. I know even if she has the placebo, on Day 91, she will qualify to roll over into the long-term study, which means she will definitely get the real thing then, even if she isn’t now.
Yes. There is this. There is distress and pain, but it doesn’t stand in the way of her joy. Tears are always followed by hugs and giggles.
Amidst all of the struggles, an old tune is being sung with new understanding…
Listen closely. It’s true.