Almost exactly two years ago, we got the diagnosis that scares the heck out of any parent – the big ‘C’ word. The funky-looking thing that had been growing on Hannah’s right knee? Was cancer. Which was terrifying. But while the surgery to remove her knee of any extra cancer cells itself was extensive – and frightening – at least at the end of the experience, Hannah came out of it with scars, but no long-lasting effects. We breathed a sigh of relief and gratefully accepted the schedule of tests and scans to make sure that things stayed that way.
This time, as soon as I heard the word ‘recurrence’… I knew. The tumor had spread into her lungs, and even though it was tiny – we know it’s been in her bloodstream and there could be microscopic hemangiopericytoma cells elsewhere in her lungs – or anywhere in her body, for that matter. At this time, there’s only one treatment that works on cancer cells throughout the body – and that’s chemotherapy. The doctors confirmed the treatment plan the next day, and we began this process of what is slowly becoming our ‘new normal’ last week when Hannah underwent her first round of chemo.
My dad went through chemotherapy last fall, so I kind of had a general idea of what it entailed. But the plan for an 85-year-old with a history of heart trouble was very different from the plan outlined for us for an otherwise healthy and active 12-year-old. My dad was on a ‘gentle’ chemotherapy regimen – one treatment every 3 weeks, for 3 treatments. Nine weeks, with reassessment afterward and potential for another 3 treatments if needed.
Hannah’s chemotherapy regimen is much, much different. First, her chemotherapy treatments are given inpatient, not outpatient. And every 2 weeks. For 36 treatments. That’s 8-9 months (or longer if any treatments get delayed by illness, infection or her body needing a longer break). Each hospital stay is either 2 nights or 5 nights, alternating. On the ‘off’ hospital weeks, she still needs to go into clinic for an afternoon for blood draws, one additional chemo drug and eventually, blood transfusions as well.
The first treatment was a ‘short’ one – only two nights. This week she has her clinic appointment and then next week she goes in for one of the longer stays. We know more of what to expect now, so can plan ahead a bit better. I don’t think it’ll ever get easy, but eventually we’ll get used to it and it will all seem commonplace, I suppose. She is a good student and loves school, so I’m not worried about her being able to keep up. At least right now. Starting middle school next year will be a whole new challenge, but we’ll deal with that when the time comes.
Hannah has been a trooper through all of this. The lung surgery and recovery. And now the first chemo treatment. Tears have come, but only briefly and only a few times, when she found out that her new normal would impact things she loves. Like losing her hair. And missing library time at school every week. Otherwise, she has tried her very best to live life as close to her ‘old’ normal as possible. I don’t know how easy that will be once we get further into the treatment regimen, but at least for now, I know it gives her a lot of comfort to be able to still attend school, hang out with her friends and just be a 6th grader.
Her friends, teachers and the whole community have been incredible. I don’t even know how to put into words what their support has meant and continues to mean every day. From little things like promoting hand washing to the bigger ones, like making sure Abbi and Becca are fed while Ron and I are at the hospital with Hannah, or donating hats for Hannah to wear once she loses her hair… We truly are blessed and so grateful.
I know it’s going to be a long, bumpy road ahead and we’re only at the very beginning. Things are going to get a lot harder, but we will get through this. Hannah will get through it.
What have we learned so far?
- Button-down pajama tops are the only good way to deal with IV tubes attached to a port in the chest.
- Having to drag an IV pole everywhere you go, even to the bathroom, isn’t fun – but it gives you something to lean on when your feet aren’t quite stable as you go for a walk.
- Giving injections to your child is much, much worse than if you had to give them to yourself.
- EMLA cream quickly becomes your best friend, to numb injection and port access sites.
- As hard as this is, I can’t imagine trying to go through it without having a quality children’s hospital in town.
- Nurses are heroes.