Memories of a Cancer Kid’s Sister

Our Story

Brother 1, Cousin, Me, Brother 2: circa 1993.

My brother was diagnosed with non-hodgkins lymphoma when I was 10 years old. He is 5 years younger than me. Most would agree that is old enough on my part to have the experience ingrained in my memory. Having a brother with cancer was a big deal.

So here I am 20 years later and we are both healthy adults. I thought it might be helpful for you to know what I do and don’t remember about that time. Not everything I remember is probably true and there is a lot I don’t remember but the strongest memories are all good.

If you are worried about the siblings of your child with medical issues, please be encouraged… it can be a net positive time in your family’s life.

What I Do Remember

  • Make a Wish Trip shenanigans.

    My brother’s care team: Dr. Ruki a spitfire of a woman, short with a beautiful long braid usually wearing her white coat over a sari. Dawn & Mary our nurses, calm & encouraging. I can picture their faces in my mind.

  • POPSG meetings: The parents would meet and talk about cancer stuff while us kids ran around, got up to shenanigans and ate candy.
  • Hickman care at home: My brother had a central line called a Hickman catheter that needed to be cared for multiple times a day. I remember this plastic blue rolling cart full of all the medical supplies. My mom would wrangle my brother still for 2.5 seconds so she could clean and flush his catheter.
  • OCFOCF Camp: Cancer kids & cancer siblings just being normal. I loved the crafts and being in a cabin with all girls my age. There were a lot of skits and camp songs and silliness.
  • Grouchy brother: The steroid rages were for real. Every big sister has times when she thinks her little siblings are sassy twerps, I probably had more than average. My brother could get out of control fairly quickly… and he was fast… and devious.
  • Christmas parties: Every Christmas for several years we would have a big celebration with other cancer families. Santa would come with a toy for each of us kids. In later years we helped organize the party which was a great way to give back.
  • Make a Wish trip: My brother wished to go to Walt Disney World and Make a Wish over-delivered on an amazing lifelong memory. Can you believe we stayed at Give Kids the World while it was still being built?! I have amazing memories from Walt Disney World, Epcot & Universal Studios. We even got to go on a short Disney cruise on the Big Red Boat to the Bahamas. Wish families please know that this is my most vibrant memory from the year of my brother’s diagnosis, it overshadows everything else!
  • Being ambushed with a flu shot: I hate needles, always have, so I’ll never forget the day that my mom and both the nurses cornered me at the clinic and forced me to get a flu shot. I’ll admit that was pretty traumatizing.
  • End of treatment party: After my brothers last chemotherapy treatments we had a big party at a park near our house. We had a huge four tier cake. There was even a clown blowing up balloon animals.

What I Don’t Remember

  • Me and my bro 2012. All growed up.

    Being scared: There are plenty of things that I’ve learned about my brother’s treatment now that I’m older. I’m glad I wasn’t mature enough to comprehend the technical details then. At the time I remember feeling like everything was going to be ok. We joked about “the blob” that had been the tumor inside my brother’s chest. Maybe I did feel scared sometimes but fear is not the abiding memory of that year looking back.

  • Being ignored: My parents did a great job at including all of us in as much as possible and when we couldn’t be included they found other things for us to do. 20 years later I don’t remember that year as a period of neglect.
  • Feeling jealous: Perhaps because anything extra my brother got was “boy stuff” I didn’t have a reason to feel jealous. I think my mom & dad did everything they could to make sure big stuff was a shared experience, like camp, christmas parties and the wish trip.

This perspective has been so helpful for me in deciding how to treat both of my children through this time of Ethan’s treatment. We try to include Elyse as much as possible. When we can’t include her, we try to find fun things for her to do with friends and family.

Do your best and know that kids are resilient and remember the good things most of all.

About Emily

Hi, my name is Emily. I’m a wife, mother, christian, momcologist, doula, writer, nerd, entrepreneur and dreamer. I like Apple products, chocolate, books, lists, being pregnant and the color purple. I fancy myself as a quirky combination of dreamy Anne Shirley and feisty Scarlett O’Hara but in a schizophrenic sort of way. Read on...

Comments

  1. That was wonderful!!! Thank you so much for sharing!!!

Speak Your Mind

*