July 1: Day -1

Well, here we are, on the eve of another big day. Tomorrow, Bella gets her transplant. To be more accurate, she gets her transfusion. There is no "surgery" involved for Bella like there would be for an organ transplant. Since marrow can go straight in through an IV, they'll just hang a bag of Ali's marrow on Bella's IV pole and that'll be that.

Then, the waiting and counting begins.

In the meantime, Ali's work is a little more in depth. First, they need to draw some more blood in the morning. (The clinic was unsuccessful today for a second time in making Ali feel comfortable enough to overcame the fear of getting a needle stuck in your arm. I'm not going to get into the blow by blow, but suffice to say there is someone in that office that perhaps is not in her ideal job.)

Moving right along, Ali will then go into the O.R. and "go under" for her procedure. They will harvest marrow out of two spots in her hips. She'll then be admitted and hopefully end up in one of the two currently-empty rooms across the hall from Bella. Then, by dinner time, she should be ready to go back to RMH and spend the night there. Then, she'll lay low over the weekend and watch movies.

For Bella, the game is to just survive. She has mucositis already (kids with epidermolysis bullosa get it earlier than others), and it is making breathing really difficult. The good news is that her lungs sound clear, so it's just in her throat and mouth. Having said that, I can't describe how rough it already is. It's not phlegm in her throat; it's more like the thickest saliva you could imagine. It's clear, but it just keeps coming and coming, and Bella chokes and gags on it. In addition, she is in so much general discomfort from the effects of the chemotherapy, that she has no energy to even sit up. She is turning orange and pink, and the chemo just smells awful. She doesn't make eye contact and for the best part of the day, sleeps in a passed out sort of stupor. For the worst part of the day, she wrestles and screams while I try to suction the saliva out of her mouth while she gags on it. I can't imagine the damage I'm doing to her lips, but it's less than if she aspirates this think mucus. Baby Daylon already stopped breathing on his own earlier this week, and now thankfully rests on a ventilator. At one point today, I began to think that didn't sound too bad, compared to the incessant gurgling coming from Bella's throat.

Throw on top of all this that one of our fellow RMH families lost their little boy to cancer today who was up on this unit for a long time, and I have to admit I'm scared up here. All I can do is try to care for Bella the best I can, and let God handle the rest. I want to thank all of you for your continued prayers. I have little ability to pray right now, and I don't feel guilty, because I know you have that covered. Ang and I'll take care of the hands on stuff in the room, and you take care of the prayer. Together, we'll carry our sweet little Bella through this. Sound like a plan?

It's hard to imagine sitting where I am sitting right now, but one day, Bella will say, "yeah, when I was born, I had this rare skin condition, but when They brought me home from the hospital, it went away." If I can just pretend that while it's summer outside, it's a Minnesota winter in here, I can be reminded by just looking out the window at the endless lush green trees that the seasons change, and so too shall this. It is so beautiful here. It is impossible to imagine that this is the same place we visited in January. I will be dancing with Bella at her first dance of her wedding thinking this was the same girl who I had to suction to keep breathing the night before her big sister saved her life back in 2010. That makes for a pretty inspiring story line. A story I can get recharged to continuing to co-write.

Thanks for helping us write this tale.

God bless you.