Our Life is About to Change

It's Sunday morning, and I wish I were getting ready for church. But instead, I'm sitting here typing and mentally going through my to-do list for the day. Phillip and Bryson made a quick trip to Indiana, so I'm home with Emerson and Avery. Taking them to church by myself would be difficult since neither of them walks, and they both require bottles and diapers. I could probably get us there with the help of my double stroller, but once in a pew, if they both require attention, I know I couldn't carry them both at the same time. So, I'm home today. I'm hoping to make the most of it by getting some house work done.

I'm sure you're tired of hearing it by now, but our days of normalcy (if you consider our current lifestyle "normal") is running out. If nothing happens, next Thursday is admission day to the Bone Marrow Transplant Unit, and then Friday the chemo begins. I got the schedule for the first couple of weeks while Avery is there, and it's like 5 days of one kind of chemo, a day of rest, then 7 days of another kind of chemo, then a day of rest, then 1 day of the heaviest chemo that will make him the sickest, then two days of rest, and finally the stem cell infusion. We've been told that by about week 2 of chemo, Avery is going to be very sick with vomiting, diarrhea, mouth sores, possible fever, and just feel yucky overall. He will basically have no immune system. I met with the transplant doctor on Friday to go over the consent and officially sign it, and if I weren't freaked out enough before reading it, I certainly was afterward! The words "risk of death" and "fatality" were in there just too many times. Not to mention organ damage and changes in the central nervous system. She told us that any illness or infection can be life threatening during this process, so isolation and protection from germs is critical. Lucky for us, cold and flu season is just starting. :( Dr. Mehta said that mild to moderate illness can be treated, but anything that becomes more severe will lead to Avery being moved to ICU, and could cause death. I know that they have to lay it all out and give us every possible risk involved, but when it's YOUR child, even those unlikely risks are scary. With each day that passes, I feel my anxiety level rising just a little. I lay in bed and think, "Can we do this?" "Can Avery handle this?" "What if it doesn't work?" In some ways, Avery is such a strong little boy, but in other ways, he's incredibly fragile.

After the stem cells are infused, it's a matter of waiting for them to graft into his body and start producing cells on their own. This time is probably the most critical, as most patients develop some level of Graft vs Host disease as the new cells realize they're in the wrong body and attack it. Again, mild to moderate can be treated, but severe GVH can be life threatening. If Avery responds well, and the new cells start grafting and producing some cells, after about a month or so, he will be moved to the Ronald McDonald House across the street from the hospital. We will stay in an isolation transplant suite and go to the hospital every day for check ups, transfusions, and occasional admissions depending on his blood counts. We were told to expect to be at the McDonald House for at least 100 days. If Avery's new marrow starts producing cells and his health is stable, we can eventually come home and just drive to Dayton Hem/Onc clinic daily for check ups there.

Phillip and I both were feeling a little overwhelmed the other night after reading through all the paperwork they gave us. After talking about it for awhile, we came to the conclusion that the only way we're going to be able to make it through this is to keep our eyes focused on the end result. We have to believe that no matter how bad things get, and the doctors keep reminding us that things are going to get quite bad for awhile, that he will get better. In a year, Avery will hopefully be living a life free of transfusions and weekly blood counts.

And, by the way, we ARE going to take a vacation as soon as Avery is healthy enough to go. :) I told Phillip that I don't care what strings we have to pull to make it happen, we need it. With Avery's health being so bad over the last year, we've not been able to go very far. So visions of my 3 kids, husband, and me sitting on the beach relaxing are also keeping me going!

So I'm going to try to enjoy the next few days with us all under one roof and get us all packed to be going different places. As always, we sincerely appreciate your prayers for the Hoskins family!

~Bethany