Childhood cancer

A Day on the Chemo Ward, Part 2

A new kid has come into the chemo ward, which is great for me because it gives me something else to focus on.  I don’t want to indulge in worrying thoughts so it’s better if I can people watch.

The new kid is a teenager. They get to me the most. Maybe because I have two of my own. My teens are not too affected by Elliot’s illness, perhaps because when we told them it is a highly curable cancer, they, strangely enough, believed us. That’s what you get for raising confident, self-assured kids. I am generally alone in my obsessive worrying. But I worry enough for all of us so our family worry quota is full anyway.

The teenager is a boy, quite tall, and wearing a very cool looking wool hat, black with a red design on the front, that, unless I am mistaken, looks like a skull and crossbones.  Teenage irony? He keeps the hat on all the time, even after taking off his coat and shoes.  He is so physically different from the other kids in here it almost feels like he walked into the wrong ward. Even my five year old looks tiny by comparison. The nurse gets him to stand on the scale, the same one Elliot was on a few hours ago, while Martin and I hovered nearby glaring at the digital read-out as it settles on a number, trying to force it with the strength of our stares to increase a bit more. (Martin and I don’t really talk about these moments, so I don’t actually know if he is trying the mind-control-stare-thing on the scale, but I like to imagine he is putting all his energy into it. Hate to think I’m standing there controlling the number with my eyes burning from non-blinking all alone).

Despite his height and age, when the teenager stands on the scale he suddenly  seems just like Elliot to me. Perched there with his too-cool hat hiding his bald head, his thin teenage body obvious under the oversize t shirt and low hanging jeans.

He hops off the scale and sits casually on the edge of “his” bed. He looks at us and says hello politely to each parent. I notice his eyes linger a bit on the Rude mom’s daughter and her long blond hair. It’s not jealousy though, I think. Might be pity. Or… maybe it’s a flashback.  A memory of when it all started for him.

I think it’s harder on the teenagers. They know what’s going on. They understand the possibilities. They also know what a “side-effect” of medication is, they know why they happen and when they will happen again. They understand they are being made to feel awful so that they can get better. But like the younger kids, they really just want to have fun with their friends, and they don’t want to be here. I think they feel the unfairness of this even more. And it is unfair. They should be at school or maybe downtown, hanging out with their friends,  eating junk food, going to the movies, laughing at jokes we don’t get and listening to music we don’t like,  discussing anti-globalization like they know what they’re talking about and then twittering about it in complete innocence, posting updates and funny pictures on facebook every 5 minutes. They should be studying for their biology exams, not hoping biology is what keeps them alive a bit longer.

His mom comes in. Definitely not a newbie. She smiles at each of us and says hello, looks directly at our kids and smiles at them too. She acts like she is home. Or at least, like she feels safe here. And maybe that’s it, here is where her son will be taken care of by someone other than her for a change, where someone else can take over the worrying for her for a while. And here, she is not a freak, she fits in. She is one of us, in fact, it turns out she’s an old pro. Her son has relapsed from leukemia, originally diagnosed four years ago. He’s been in treatment for a few months, receiving chemo, and they are now looking into stem cell transplant options. When you hear that, you imagine a poor frail guy lying in a hospital bed and hovering on the edge of life. But this boy is sitting there drumming with his hands on his legs, listening to a song on his ipod, gazing out the window. He looks fine. He actually is, in reality, hovering on the edge of life, but he also has some good odds on his side. Not as good as the rest of us in that room; relapses are harder to cure, but for now the treatment is keeping his cancer from leaching his life away from him too quickly. It has slowed it down, put the brakes on the cancer steamroller plowing him over, but it hasn’t killed it. The drugs are just not strong enough for that. But he is very, very lucky to have a brother, and he is hopefully even luckier if that brother turns out to be a highly compatible match. A stem cell transplant for leukemia can be done even with a stranger’s donation, but the closer the match, the higher the cure rate. His mother has explained all this to the Rude Mom, just chatting in a friendly, casual way, while Rude Mom stares at her like a deer gazing silently into the headlights.

So, what are his odds? I watch him as he gazes out the window. His name is Patrick. His mom has said it several times, in each conversation she says his name frequently, like saying it keeps him alive. His music is on too loud, we can all hear it, the staticky noise of music escaping from headphones. It’s some kind of annoying song that my older kids would like. He taps away at his legs, a casual drummer lying in bed in a roomful of strangers. His mom has gone back out now and is talking to the nurse.

I do some googling on my phone. I want to know more about stem cell transplants. I used to be afraid of looking these things up, but not so  much anymore.

If his brother is a good match, his odds, if he survives the transplant of course, are between 50 and 70%. If the treatment is a go, which they should know soon once they are done analyzing the brother’s cells, they will admit Patrick to the hospital and start destroying him. By that I mean they will begin the intense radiation and chemotherapy treatment to completely wipe out his own bone marrow, to make room for the new stuff. Also to destroy all the cancer hiding in there.

Of course, they kill everything else while they’re at it, and he’ll have a high risk of getting an infection from his own body. He’ll have all the fun chemo side effects, the nausea, mouth sores, aches and pains, etc. He has a fairly high risk of long term side effects like infertility and cataracts. Then, once he gets through the transplant and the risky period for the first weeks right after, he’ll have to keep taking immune suppressing medication for a long time so that his body doesn’t  destroy the new cells. But that means he also won’t be able to destroy any viruses or bacteria he is exposed to in the outside world. It’s like walking on a high wire, balancing precariously on the edge of possibilities.

It turns out they get the results that day.  Patrick is lucky. His brother is a good match. The mother is acting all happy, but also looks like she might cry. Her hands are shaking. She actually says “Patrick” three times in a row without attaching a sentence to it. For some reason, I keep wondering how the brother feels. They have a long road ahead of them, and about an hour later they leave, headed for the admissions office. Good luck, Patrick, I whisper in my mind. See you when they let you out next year.

I am humming one of the annoying songs he was listening to and find I like it after all.


…More in a few days…

7 thoughts on “A Day on the Chemo Ward, Part 2”

  1. Wow. Agonizing. Felt like I was there too. Elliot is doing so well, I was even forgetting it’s not like that for every kid. Good luck, Patrick.

    1. Hi Joelle,
      Yes, it’s true that some of the situations and kids we’ve seen have had much worse prognoses than Elliot, and yet, the miracle of modern medicine seems to be successful more and more! Patrick has some pretty good odds on his side now that he has a good donor match.

  2. Tu sais j’ai recommencé mon commentaire une dizaine de fois car après avoir lu ton blog je savais que je voulais dire quelque chose car j’étais vraiment touché mais c’est tellement difficile d’exprimer ce qu’on ressent quand on lit une telle histoire que je n’ai pas les mots.

    Même encore j’ai tellement de différentes pensée à l’égard de Patrick, d’Elliot de tous les autres adultes et enfants que je connais qui ont eu un cancer. Des fois il me semble que vous devez vivre tellement d’émotion que c’est un miracle que vous n’êtes pas anéanti comme avec un Tsunami.

    Vous êtes tous très courageux et je vous salue.



    1. Merci Chantal, le courage n’est pas toujours là mais on fait de notre mieux… Et maintenant, il ne reste que 3 chimios!!

  3. Oh my goodness, you’ve got a novella rolling here – what a day at the chemo ward, Nicole. Patrick’s story is indeed heart-wrenching for all the reasons you listed. He has a long road to travel, though it IS good news that his brother is a match.

    Thank you for sharing. You’re quite a strong writer.

    1. Thanks Catherine. Those are long days, so I end up with a lot of material! I am so grateful that my teenagers don’t have to go through this, and yet, Patrick had a wise look to him that I wish my kids had, but that can only come with these types of experiences. That’s life I guess.

  4. I’m so glad that you are posting your thoughts and and your observations of not only your family but families like Patrick’s. You have such a insight and humor about how you go through each stage in Elliot’s healing process.

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