The Plan
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. And to give us a baseline for any future failure. 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 as long as we get the boy.
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 best to 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, 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 a 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 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.
Whitney and I send lots of love to all of you we have been thinking of you for the last ten days. Just called your parents and spoke to your Dad, who gave me your website. It’s great that you can write a journal, and you are a great writer. Will bring over one of my favorite easy family dinner makings.
Your new neighbor, Georgia
Krissy, it’s going to be a long haul, but you can do it! First, that nuclear scan isn’t hard to do – just a pain in the ass because you have to be there for so long, but so, so important to be able to titrate the doses of the chemo to his kidney function. Most of the time you’re just walking around killing time till the next part of the scan – so bring lots of things to do. Abby loved the fruit drinks at Java Jive and sitting out in the garden there (hard to do when it’s cold and snowy, I know, but they also have great chocolate covered popcorn there). Audiology test wasn’t bad either – just scary to think they may lose part of their hearing – Abby did fine – never had a hearing problem (except now, when she doesn’t want to hear what I have to say). And then of course, there’s that radiation and chemo – not a walk in the park, but not terrible either. They are really experts at controlling the side effects of the chemo – they have so many tricks up their sleeves, it’s amazing. You’ll do this, you’ll see it through. We made up a calendar that we put in a binder with all the chemo protocols on the designated dates which helped us feel a little more in control of our lives. Of course sometimes the dates moved, if we had to delay chemo, but mostly we were on time. The calendar was computer generated, so if the dates moved, we just re-printed the calendar with the new dates. In the binder we also kept a running commentary about our hospital admissions, clinic visits, tests, etc, which also helped keep us organized, and also gave us a sense of the progress we were making, every time we got to “check off” a dose of chemo on the calendar. Always made us feel better – OK – so that dose is over – now on to the next one. Abby was on a one week on, two week off, protocol – sounds similar to what Austin will be on. She did that for about seven or eight months, as I remember. It worked OK for us. We got through it. Beleive it or not, while we were in the hospital, there was another little girl around Abby’s age going through a similar (though even tougher) radiation and chemo protocol – and they became friends, and they were in the same pre-K class together last year! Her Mom was a teacher at Abby’s school! They both made it through! So Krissy, this is a “do-able” thing – that’s what you have to keep your eye on. If you have a chance, and I know you are doing a million, million things, I am just curious which drugs are in the chemo protocol. I’ll give you whatever tips I can. Barbara
Thanks Barbara, for all your practical advice. Jeff did put my mind at ease today about the fact that there is nothing “nuclear” about the nuclear scan! We’re using a tweaked version of the NWTS-5 protocol for relapsed Wilms. We’re skipping the 12-week Induction phase b/c it’s designed to shrink the tumor before surgery and we’ve already surgically removed it. So we’ll do the 6-week consolidation followed by one or two cycles of the 12-week maintenance. He’ll be getting various combinations of Cyclophosphamide, Etoposide, and Carboplatinum. Did Abby get these? (His first regimen was Doxorubicin, Dactinomyacin and Vincristine, also NWTS-5 for bilateral WT.) And yes, he got his radiation fitting last Friday.
Krissy – here’s what Abby got. We did 30 weeks of chemo. She had six cycles of flank radiation just at the beginning of her chemo. The chemotherapy consisted of various repeating cycles, but basically she would get a cycle of vincristine, doxorubicin, and high dose cyclophosphamide, then two weeks “off” (except that she would sometimes get outpatient vincristine once a week during those two weeks “off”), then a cycle of carboplatin, etoposide and lower dose cyclophosphamide, then two weeks off, then another cycle of either the first regimen or the second regimen, repeating every two weeks, for thirty weeks, sometimes with more vincristine sprinkled in during her “off” weeks, just for good measure. Interspersed with all this there were various tests and scans, especially the kidney function test to make sure her dosing was correct. And sometimes the dosing would change as her body surface area changed (from growing). During the first few cycles her white count recovered very well, especially with the use of Neupogen to boost her white count. Her white count tended, however, to go very, very low – probably more so than others on a similar protocol. As the protocol progressed, her white count took longer and longer to recover, and went down lower and lower. This is a natural thing to happen – after all – they’re wiping out that bone marrow, and it takes time to build itself back up. Sometimes the doctors would alter the protocol based on the response. As I mentioned before, Dave and I also altered Abby’s protocol somewhat, based on what we read and what we thought made sense, and out of fear of long term toxicities. But Abby had a diffusely anaplastic Wilms, the ones that are so hard to cure, so the regimen was pretty toxic all around – we tried to balance treatment with toxicity. But honestly, she basically tolerated the chemo very well. Not that it was a walk in the park – don’t get me wrong – I also had those long nights lying there next to her, with my heart beating fast – raging at the world – and fearful of what we were doing – listening for every breath – watching her pee output – you know – the whole nine yards of it. And sometimes raging at the doctors and nurses when they didn’t understand what I was trying to tell them – since we know our kids best – no matter what the doctors say! But everyone at Rainbow was so nice, and so understanding, and so helpful – if Abby wanted icecream at three in the morning, she got icecream or popsicles, or whatever else she wanted. She loved the playroom there, as did her older sister. We found the one thing that she never lost her taste for was raspberries, so we could always bribe her with raspberries, we always had a bowl of raspberries sitting in our little refigerator in the room, especially if we needed to get some medicine into her. We would often see the same families in the hospital over and over again – and we became a small community unto ourselves – and it was very comforting. But toward the end of the protocol, Abby did have a tougher time with things – her bone marrow was very depressed, and it took longer to recover from each cycle, and the chemo doses had to be lowered even more. But we did get through it. That’s what you have to focus on – just one step at a time – and any “problem” that comes up – you will deal with it – there will be a solution. You are a good planner and a good problem solver, so you will get through it. And you are a fabulous writer! And you have so many wonderful people supporting you – so just take whatever help is offered – you will get through this. Barbara
My mom and I are thinking about you and your family and praying and hoping for the best.
I was glad and surprised to see Austin out yesterday–he looked like he was having fun. Braedan and his buddies definitely were having fun, too. I’m glad you were able to do that and that you get Christmas at home together, too. I seriously hope you are able to catch up on a little bit of sleep. It’s much harder to handle things when you’re scared and sleep-deprived.
Merry Christmas, and a New Year full of hope and strength.