A mom’s guide for other parents from conception (diagnosis), pregnancy (treatment), labor and delivery (treatment and more treatment,) and the first months of life (life after treatment, that is).
Ok here’s the “but seriously” part. Ali asked me to write a guest post on her blog, something which “new” people entering the cancer world could read and relate to, maybe even share some pearls of wisdom. (Ack! Ali thinks I have pearls of wisdom! She clearly has let the chemo go to her head!)
The thing is, Ali and my 6 year old son Elliot, have a few things in common. For one thing, they both seem to be able to seize the day and enjoy life like few people I know. They also like to write (although Elliot tends to prefer writing the word “Elliot” repeatedly, even on objects and walls. Ali seems to sticks to books, blogs and songs. But I’ve never seen her place, so who knows.) And then of course there’s that other thing they have in common: a stage 4 cancer diagnosis.
Elliot was diagnosed in September 2011 at age 4 and a half with advanced stage pediatric kidney cancer (Wilms Tumor), and, like Ali, the cancer had already spread to his lungs. It was roughly three months into his treatment that I read Ali’s book “The C Card and Me”.
Elliot went through some tough times, lots of chemo, surgery to remove his kidney, radiotherapy, and then way more chemo. There were some pretty dark moments. But strangely, there were good times too. Meeting some of the other parents of kids in the chemo ward has been great. You might find it hard to believe, but there will be bright, shining moments of joy and hope during the treatment, and many of them involve sharing this with others who are going through it too. So if you’re just starting, open your heart and your eyes. It could be your lifeline to not losing your sanity during the dark times.
Many things in Ali’s book apply to caring for a child with cancer. I remember the exact moment when I was reading her chapter “Show No Fear”. I actually sat up and figuratively slammed my book shut (I actually have a kindle, definitely a lack of book-shut-slamming ability there) and literally said “Yes!” That chapter really spoke to me, as a parent of a kid with cancer. Fear is really the worst part of the whole thing. I know anyone with cancer must be terrified, their caregivers too. And I think that as a parent, the fear can be crippling. It’s instinctive, it’s gut-wrenching. But here’s the thing: if you are paralyzed with fear, you’re not able to enjoy anything anymore, including the limited amount of time we all have with each other in this life. We’re all basically on the same road, with the same destination; some of us just have longer stretches of road left ahead of us than others. So whatever it takes, you need to get that fear under control and enjoy the moments you have. I use humor a lot, as you may have noticed. Laughter is good for the soul, it’s hard to hold on to anxiety when you’re laughing.
I’m not sure what other advice I would give to a new parent entering the pediatric cancer world. Maybe I would just sit next to her and hold her hand a while.
Ali’s book gives lots of practical advice, here are a few of my favorite parts.
Ask lots of questions: Did that. I always entered the doctor’s office with a notepad with my list of questions, and wrote down their answers. Since in our case it was a team of oncologists who deal with all the kids, I could often ask the same question to different doctors and see how different their responses were. You know, you get your entertainment any way you can in this world. I kind of like to think they talked about me later in their meetings and felt slightly afraid.
Drink lots of water. Except in our case Elliot seems to always want water exactly after you have shut the light and left his room at bedtime… “I’m thirsty!!!!!!!!!!!!!” And of course, cancer moms don’t get to say “I just gave you a glass before you went to bed!” You just spend the next 30 minutes shuttling back and forth between the kitchen sink, the bedroom, the bathroom (“I have to peeeeeeeee!!!!!”)
Fill your life with positive people, get rid of the negative. You now have no time for emotionally draining friendships. Elliot has no problem with this: he chooses friends who are nice and have cool toys. It’s a bit harder for adults – we have guilt. But it’s a necessary part of the process, you (whether patient or parent) will have limited emotional energy left, you can’t be carrying someone else’s negativity too.
Chapter 8 in her book for kids could involve popsicles or ice cream. Whatever works. ‘Nuff said.
Oh regarding the port, Elliot insists that putting the needle in hurts. Ali says it doesn’t, so I’m not sure who to believe. In fact, Elliot says it starts to hurt as the needle is approaching his skin, and this forces him to squirm away on the bed requiring 4 strong adults to hold him down. Ali? Insight on this?
Well there you go, my pearls of wisdom. We made it, so can you. Childhood cancer has an overall cure rate of 80%. Sounds great until you’re in that world, and you realize that what that means is that out of every 5 kids, one doesn’t make it. I believe quite strongly in knowing everything about the cancer you’re dealing with, and its treatment, but I don’t think you should dwell too long on the statistics. For one thing, it will always bring up the fear, no matter what the number, because the number is never “100% cure rate with pain-free easy treatment that takes about 5 minutes”. And more importantly, any statistic you see is at least 10 years old, very often older. Newer treatments are being discovered, and current treatments are being fine- tuned. No number can represent you.
As I write this Elliot is drawing a picture of a dragon with two heads and a long tail with sharp red spikes on it. He wants to bring it to the hospital tomorrow to show the nurses. I’m not sure if he is trying to impress them or scare them.
He’s doing great. Diagnosed at age 4 and a half, he is now 6 years old and back at school. He actually complains when there is no school because he loves it so much. And tomorrow is a big day at the hospital! Elliot will have the port removed! We are now 6 months post-treatment, in the kids’ cancer world that’s a bit early to have it removed, but they do it if they are fairly sure the odds of relapse are low and the child wants it out. Elliot has asked to be given the port after, he thinks it will make a cool toy.
There’s finding the silver lining!
– Learn more about Nicole and Elliot’s inspiring story from Nicole’s blog “Adventures in Cancerland and Switzerland.”