There are many reasons why I write this blog everyday. A lot of it has to do with needing a place to process my own feelings, an outlet for expressing my fears and hopes and all the good and bad that comes along with this. I often write to pass along information to all of you, my friends and family and the community that has formed a circle around us over the last two years. As I help you to better understand what we’re going through, you’re then better able to support us as we go through it. And sometimes when I write, it actually helps me and Mark see our situation and our path ahead more clearly.
After I posted last night about this dilemma, Mark and I both realized, first separately and then together after reading and rereading the post, that the decision is fairly clear. It is not easy. And it is not good. But it is there.
We cannot afford to keep cancer, or even potential cancer, inside Austin just to save his kidney. He can live without a kidney. And that is all it comes down to.
Now this doesn’t mean we are going to rush ahead with the surgery. It is still enormously risky and we’ll gather as much information as we can first, from the needle biopsy and whatever else. The doctor from St. Jude said he was willing to try a kidney-sparing surgery; he did not say he could do one (and he was very clear about that with me on the phone; doctors do not like to give guarantees, you know). So kidney failure has to be something we are willing to accept if we go down that road. And it is no walk in the park. I sat down with Austin’s nephrologist a few weeks ago so she could take me through some of the basics of dialysis and everything she told me sounded pretty awful. It was do-able, it was bearable, but it was pretty awful nonetheless.
First of all, you know we’d have to be in the hospital, with Austin hooked up to a machine for four hour stretches three times a week. She said they do their best to schedule it around school and work and other activities but most people are either on a Monday-Wednesday-Friday schedule or a Tuesday-Thursday-Saturday schedule. Now as much as I love Rainbow Babies’ and Chidlren’s and as happy as I’ve been with the care we’ve received over the past two-plus years, the idea of spending all that time in the hospital is crushing. It feels like a weight coming down on top of me, squashing the breath out of me.
Next thing (because I really can’t dwell on the squashing-the-breath-out-of-me thing right now) is that he’d have skin grafts on his forearm where they’d basically be putting veins and arteries on the outside of his skin large enough to allow massive amounts of blood to flow in and out of them during the dialysis process. If you’ve followed this story from the beginning, you remember the trouble we had with Austin’s central line (Broviac) and how difficult it was to keep him from touching it and dirtying it or tugging on it and all those things little kids do. These skin grafts would again need to be kept clean and dry at all times and would place him at great risk of infection, bringing back all those automatic trips to the ER for minor fevers and the like.
Then, there is what his nephrologist described as the most difficult part of dialysis, especially for kids and that is the serious dietary restrictions. I don’t know a lot about this yet, but I do know we’d have to limit potassium (bananas), phospherous (cheese — his all-time favorite food, which he requests in slices “as big as my house” and if I give him a normal sized amount, he whines and says, “No, as big as my new house!”), salt, and fluids. As in severely restricted intake of fluids because he wouldn’t be peeing anymore (which seems strangely sad to me in and of itself) and would only flush out all that waste every other day. Anyone who has ever tried to control the diet of a toddler knows that suddenly removing entire groups of food (especially those once thought of as relatively healthy) is exceptionally difficult.
I know we can do this. And we will if we have to. But I wish more than anything that Austin didn’t have to prove his strength yet again. I wish he didn’t have to be brave and resilient and tough. I wish he could just be normal, do the things normal kids do, eat the food normal kids eat, assume he will reach his tomorrows like normal kids will. I wish we could just leave him alone, let him grow up unharmed and unscathed. I wish he could just be.
Just let my Austin be.