On January 22nd of this year, an IV dripped toxic chemicals into my daughter’s body for the first time. Chemicals that are necessary to stop any more spread of her cancer, but which ironically could cause additional cancers in her themselves. Or damage her heart. Or her bladder. Or cause other issues that could follow her for the rest of her life.
For six months now, she’s endured numerous pokes, port accesses, tests, blood transfusions, IV drips and more. She’s learned how to drag an IV pole from her hospital bed to the bathroom and back while half-asleep, without blinking an eye. She’s thrown up in the pale pink nausea basins – and in the hospital sink and bathtub, when a basin wasn’t at-hand. She’s lost her hair, her eyebrows and eyelashes – and quite a bit of weight. Foods that she used to love don’t sound good to her anymore and the list of what she will eat keeps shrinking.
Six months ago, these long weeks and months stretched endlessly ahead of us as we tried desperately to understand and accept what was happening. We couldn’t see an end in sight – we could barely think ahead to the next week. We didn’t know how to get through the endless-feeling hospital stays or what to say to the well-meaning, “let us know how we can help!”. We didn’t know what we needed or how we were going to survive what we were told would be a pretty intense 8 to 9 month chemo regimen.
Life goes on, even in the midst of upheaval and cancer treatment. And these months have zoomed by so much faster than I ever could have expected. We’re nowhere near the end yet – only just over halfway done, due to delays and chemo holds, but once we hit that halfway point, I suddenly began to be able to breathe again.
I equate it back to when I had 2 small kids in diapers at once, and my time was spent in a sleep-deprived haze of just trying to make it through the day. And then suddenly you look up one day and realize that those two kids aren’t so little anymore and you don’t have to be in survival mode anymore. The world went on while you weren’t paying as close of attention. Somewhere in there, I think I missed a decade or so of pop culture – I don’t think I could name a song title or movie from the early 2000’s because I was too busy watching 5,403 episodes of Dora the Explorer and listening to The Wiggles everywhere we went.
This isn’t exactly the same – there are no cartoons or singing Australians… But that whole mechanism of being in survival mode just trying to get through the day… That feels awfully familiar right now. Although I think I’ve finally turned the corner from simply getting through the day and am starting to notice the larger world around me again.
Our ‘normal’ has changed, of course – in ways I never could have imagined six months ago. I’m always aware of Hannah – where she is, what she’s doing, how she appears to be feeling… The worry never goes away, and to some extent, it probably never will. I’m more comfortable leaving my other two girls home alone for hours on end than I ever thought I would be with Abbi only being 14. I know most of the nurses on the 9th and 10th floors of the hospital by sight if not by name. We have a routine in place for hospital stays – I know to put the air freshener in the bathroom as soon as we walk in the door when she’s admitted, to try and mitigate the ‘hospital smell’ in there because it makes Hannah nauseous right off the bat. I know where to get my own linens and towels without having to bother the nurses, I can silence an IV pump so the incessant beeping doesn’t drive us crazy while waiting for a nurse to add a bag of saline or fix the tubing. I know that ‘upstream occlusion’ will likely occur at least once a day and that it’s nothing to panic over. I know when the hospital cafeteria opens and closes for each shift change and when hot meals are available versus just whatever’s left over.
I look at the board to see who’s on the floor that we might know and recognize many of the names that I see on a regular basis. The Child Life folks know that they have to make Hannah get up and play a game instead of asking politely because she’ll always say no if given a choice, but has fun when she does get up and about. They know that she’s truly not shy, just avoids talking as her way of coping with having to be inpatient so much. They’ve been known to coax a smile or even a laugh out of her from time to time. Especially when therapy dogs are involved. 😉
This new normal includes a lot of uncertainty – my girls know that when Hannah and I head up to clinic, we may be gone for 2 hours or we may be there for as many as 6 hours. They know that texting is the best way to get a hold of me because my phone doesn’t always get good service up on the 10th floor. They know that when we head up to the hospital for an inpatient stay, we may end up back home if Hannah’s counts are too low. We can’t make long-range plans or look more than a week or so ahead because so much of Hannah’s schedule is dependent on how her body’s handling the chemo at any particular point.
And yet, none of this fazes us anymore. It’s just how things are.
I realized just how far we’ve come when I was talking to another mom of a newly diagnosed Leukemia patient – a friend and classmate of Abbi’s whose family also goes to our church. She is still at the very beginning of that survival mode stage, overwhelmed by everything that’s going on. I remember those days vividly. And I mourn a little for the person that I was back then. I would give anything to never know the feeling of giving my child injections or waking up to the sound of her throwing up in a bucket across the hospital room. But that’s our reality now – as it is for so many other parents at our hospital and all of the other ones across the country and around the world. Too many kids fighting cancer. And too few funds and resources to help find better cures that work, and work without all of the often horrific side effects and complications.
There are five kids (that I know of) who live in our town right now and are fighting cancer. Two are Abbi’s classmates who are heading to the high school this fall. Two are elementary school kiddos. And Hannah, starting middle school. Two of those kids have just been diagnosed this month. One has just relapsed for the third time. The other two (including Hannah) have also had relapses this year.
Two kids we know in treatment at our hospital have no current hope for a complete cure. Another is planning to undergo a bone marrow transplant as her only hope to survive. And yet another has just been accepted into a trial of an experimental treatment that may extend his life – or may not. So much pain, sorrow and worry. My Facebook feed is full of way too many pages of kids fighting cancer, or foundations created in the names of kids who have lost their lives to it.
We are fortunate that Hannah has (so far) not had any major side effects from chemo. She hasn’t had to be rushed to the emergency room with a fever or pain, as so many other kids we know have been. Most days she feels pretty good, just tired. And she’s always cold. Outside of hospital stays, she’s had very little nausea. We are grateful for this and for every day that brings us closer to the end of treatment. For the first time, I really feel like I can actually see an end to it. It’s still months away at this point, but the goal is in sight.
So much has changed over the past six months. I only wonder what the next six have in store for us.