OK, so it’s probably a good thing that I’ve been far too exhausted and far far too busy to update for the past forty-eight hours because the plan had changed about forty-eight times since then. Well, no, it’s not the plan that’s changed so much as the details of the plan. But now I think we have it and I think it’ll stick, except of course for the unforseen detours we’ll undoubtedly take due to Austin’s health on any given day or week.
The basics: We are not starting chemo or radiation until Monday, December 28. Which means that yes, we will all be home, together under one roof, for Christmas.
We were released yesterday (Sunday) morning after what was an extremely long and scary night (for me at least) in which I felt certain, at several different points, that Austin’s kidney had just up and failed because he wasn’t peeing enough. I was literally lying in bed next to him, with my heart pounding in my chest, checking his diaper for wetness and feeling his belly for an imagined hardness that, in my own sleep-deprived and suddenly paranoid mind, meant he was filling up with fluid because his kidney could no longer filter it out. It took two separate calls to the nurse who then made two separate calls the doctor to calm me down and convince me that he simply hadn’t had a lot to drink that day. Actually he had had almost nothing to drink because he wasn’t allowed in the long and delayed lead-up to his surgery and then was groggy and only sipping in the after-math of anesthesia. It almost seems silly looking back on it except that I can see that these next few months are going to be filled with moments of concern that turn quickly into moments of panic.
Anyway, we’ve been home now for 36 hours and most of them have been spent holding Austin or dealing with a vicious cycle of constipation, cramping and diarrhea. It seems such a minor discomfort in the face of all that’s to come but I so badly want him to get well and be well and gather his strength that this setback has been both frustrating and heartbreaking. He does seem to finally be doing better and has had some really great moments, especially this afternoon at Braedan’s birthday party.
This party was the single sacred event this week that I told the doctors was completely off-limits. “Start chemo on Christmas Eve if you want, keep us overnight on Christmas itself but give me my son’s birthday party. Let me just be there.” Well, it was more than just me who was there. It was all four of us together, with a slightly dazed and definitely slower Austin enjoying the festivities as much as any other kid.
The rest of this week will be spent returning to the hospital over and over each day for all the necessary tests and appointments leading up to next week. Tomorrow, we have a quick visit to flush his mediport and remove the tube draining out of his incision site. Wednesday, he’ll have a six-hour long “nuclear scan” (I despise that name) to measure his kidney function in order to tweak his chemo dosages to a level his kidney can (hopefully) tolerate. Thursday is a much quicker audiogram to give us a baseline hearing level because one of the drugs can cause permanent hearing loss. I know, what the fuck, right? Funny the things that strike your heart, but I actually got over that one pretty quickly. We will take the boy deaf if that’s what we get.
And then three days of no hospitals, no doctors, no procedures, just family and feasting and presents and playtime and hopefully (for mom and dad, at least) a little peace and rest.
And then it begins. Monday we return for five days of in-patient chemo and radiation (the radiation is only in-patient because we are). Unlike his initial six months of chemo, which was administered once a week as an out-patient, this kind is administered each day for a series of days (sometimes five, sometimes three depending on which combination of drugs). Sounds to me like the real reason for being in-patient is for symptom control. At first, I thought, “No way, we can handle this at home. We’d always rather be at home.” But just these past two days of being here, when what he’s suffering from is pretty minor in comparison, I know it will be easier to be in the hospital. With people at the ready twenty-four hours a day to help us: change the sheets, clean the puke, make the decisions about what medicine to offer. We won’t have to wonder if a reaction is normal or if it’s dangerous, we won’t have to guess at how to best treat something, we won’t have to juggle the immediate needs of the sick child with the immediate needs of the healthy one.
Chemo will last anywhere from 18 to 30 weeks (sorry to all of you who read that when it accidentally said “months”!), depending on how much Austin (and his bone marrow) can tolerate. We’ll have one week on followed by two weeks off for “count recovery,” which allows his blood cells and bone marrow to multiply before being destroyed yet again. His immunity will be quite a bit weaker than it was the last time and we do expect to pull him out of school. This particular chemo regimen is actually designed to last for 90 weeks but few children are able to make it that far because their bone marrow is so thoroughly depleted. We are committed to 18 weeks and then may add the second 12-week cycle if he’s able and if we all deem it necessary.
So, having a plan is helpful, lets me prepare, both mentally and practically (new meal and playdate requests will come in a few more days). But more than anything, I am scared. Scared scared scared. Scared for how it’s going to be, scared for what it’s going to do, scared for what it might not do. I am trying to look at the one small inch in front of me, just one tiny step, one day at a time. And I know we’ll do it. But I am terrified.