Emily Hammond | 12 Years in the World of Childhood Cancer

We spoke with Emily Hammond, a Cancer Mama to her child Griffin, who was diagnosed with Rhabdomyosarcoma in 2011. Now over a decade later, Emily continues to share her family's story and how they remain involved with helping other families affected by cancer!

What is your son's cancer journey / your family's journey with childhood cancer?

Our family includes myself (Emily), my husband Marty, and our 14-year-old son Griffin. Griffin was diagnosed with Rhabdomyosarcoma at 22 months old. The cancer presented behind his eye, and he underwent 48 weeks of chemotherapy followed by 25 rounds of chemoradiation to his face. Now, he’s 14 and doing amazing. He still deals with some residual effects of the cancer such as issues with his sight, teeth, and some walking difficulties. But overall, he lives a normal teenage life. He just graduated from Grade 8 and will enter high school in the fall. 

It’s hard to compare his vision before and after cancer. He was so little when he was diagnosed that he couldn’t tell us anything. Before chemo, the tumor reduced vision in his eye to almost nothing. That initial vision loss was reversed through treatments.

Now, he deals with cataracts occasionally. It’s hard to zap the eyeballs of children, but that’s necessary to completely clear a cataract. He’s had the surgery before, but it looks like we’ll have to do it again. When the surgeons met him at 6 years old for cataract surgery, they were confused. He was too short to even fit inside the machine they usually use for the surgery! These post-cancer problems are brand new to these doctors.

Having a preschooler who was a cancer survivor led to some funny moments also! When Griffin went to kindergarten for the first time, he came home and asked me “Do those kids have cancer, or not?” I asked him why he thought all the kids in kindergarten had cancer. But then I realized, the only kids he grew up with were cancer kids. We attended their birthday parties, no more chemo parties, and they attended all of our parties. They truly became our family. So in his mind, every kid his age had cancer. We had to have a long talk where I explained that not every kid has cancer. Also while in kindergarten, there was a little play kitchen. The teacher once asked me, “Why does Griffin wipe down the kitchen every time he uses it?” I had to explain that he’s a cancer kid. We always had to clean everything! And that was reflected in the way he played.

How did you begin to heal after treatment ended? 

During the year of Griffin’s cancer treatment, I was Warrior Mama. I got stuff done. When Griffin completed his treatment, I melted into a puddle of useless blah. I couldn’t get dressed, couldn’t cook, couldn’t do anything. I assumed that as soon as his treatment was over, I would go back to work and life would be great again. Absolutely not. 

I had to work on myself both mentally and physically. We lost several close friends during his treatment, which caused a lot of survivor’s guilt. What the heck? Why is my kid okay and theirs passed away? We followed the same treatment plan! It just wasn’t fair. 

Unpacking all of those emotions took time. My friends and family gave me strength, and volunteering became a lifeline for me. I started participating in OPACC, Ontario Parents Advocating for Children with Cancer. One of their programs trains parents to become peer support persons. I found other strong cancer parents and we supported one another. We came from different cancer backgrounds: those whose children were actively fighting cancer, those whose children were out of active treatment, and those who were bereaved parents. Nevertheless, we came together and helped each other through some difficult years. 

Now, even 10 years after Griffin completed treatment, I’m still heavily involved. I’m currently the Chair of OPACC, and we continue to help cancer families. Not only do we have peer support groups, but we also have liaison staff members who work in local hospitals. Those staff members meet with parents on the cancer ward or in the chemo clinic, and hand out food gift cards to feed the family, parking passes, and gas cards to help with transportation costs. 

One of the things I struggled with the most during my child’s cancer treatment was asking for help. I always helped others but struggled with humbling myself and asking for assistance. Eventually, I realized that I couldn’t do this by myself. We owned a business and worked full-time, but couldn’t afford diapers. Since Griffin received treatment at a hospital out of town, we had to maintain our regular household plus a household at the Ronald McDonald house. We bought two sets of groceries. We had to continue supporting our businesses. Cancer strains your finances, your relationships, and your marriage. It was a lot for me to deal with, and it’s even more difficult if you’re a single parent. 

Groups like OPACC, IHadCancer, and other places are great for finding support. It’s so important to find ways to feel less alone. 

When Griffin's treatment ended, where did you need more support?

Even though this experience was 10+ years ago, the emotions are so vivid that I can still remember exactly how I felt. 

One day, I had six oncology team members at my beck and call. I could page them. I had their phone numbers. I was on it. The next day, Griffin had a fever and I had nobody to talk to. He still had chemo in his system and radiation burns on his face, yet the medical system expected me to take him to our family doctor who hadn’t seen him in two years. The aftercare was lacking.

Even now, I’ll tell our family doctor that Griffin had rhabdomyosarcoma, and they don’t know what that is. They don’t know how to deal with it. I have so many health questions for my post-cancer child. One such question: Does Griffin need new vaccines? He had them as a baby, but does he need any again after treatment? The primary care doctors just want us to return to the oncology hospital for our answers.

Mental Healthcare after cancer is also lacking, both for the patient and their family. It’s hard to find professionals who know how to help those going through life after cancer. Grief counselors exist, but I’m not just dealing with grief. I’m also dealing with PTSD and depression. The few professionals who are trained in cancer mental healthcare usually care for adults with cancer, not children. We found it very hard to find professionals who could help us. 

What other organizations supported cancer families?

Ontario had a branch of POGO. They paid for our Ronald McDonald House stays, saving us around 40 dollars per night. We still support the Ronald McDonald House through fundraising, they helped us so much. 

At OPACC, I started Courage Capes. We make homemade superhero capes for kids in the Hamilton Ronald McDonald House. When the children check-in, they get to pick a cape for for themselves and their siblings. The cape highlights the bravery of the child during their treatment. A strong group of cancer parents who have worked together for years pay for the materials ourselves. It’s a labor of love, and we love doing it for the community. Just the other day, I got a note from a mom whose kid dug through the Courage Capes box so he could find two capes that matched. He gave one to his favorite nurse because “She was his hero, and he wanted them to be heroes together.”

One night when Griffin was still in active treatment, I was up at 4 AM to give him his meds. His head was cold and I wanted to give him a little hat. At 4 AM, I watched Youtube videos and taught myself how to crochet. After I finished his hat, I started making hats for other kids and donating them to our local chemo clinic. 12 years later, I’m teaching crochet classes. We created a little group called “Caring Squares.” Each person makes a granny square, and we sew all the squares together to make one full blanket to donate. This is a way of giving back to the community that everyone can do, and it’s been so healing. 

Find something that brings you joy and that your community needs. It can be literally anything. Grounding yourself and finding the silver lining is so important when you’re going through something traumatic. 

What message do you have for parents whose children are facing a cancer diagnosis?

My main message has always been: You are not alone. Dealing with a cancer diagnosis is such a lonely place to be. Those hospital halls are long, dingy, gross, and you lose a lot of non-cancer-community friendships. But you’re not alone. You might have to reach out first, but there are so many people who would love to help you. Sometimes you have to be the one to open up, and then you’ll find another cancer parent going through the same heartbreaking journey. You can help one another. 

Cancer sucks. Everything about cancer sucks. But there’s little silver linings every now and then. At one point, I went to Griffin’s old cancer hospital for my own health stuff. He was upset when I returned home, saying “You went to my hospital without me? Did you have fun without me!” Here’s this kid who basically went through torture during cancer treatment, but he was just horrified that I went to have fun at the hospital with the nurses without him. Having cancer is crappy, but the people you meet and the friends you make for life can make it wonderful. 

We still have friends who come to every birthday party. We see them a few times a year, and now our kids are 14 and planning a camping trip together. We created a core family group who went through some pretty crappy stuff, but now our families get along fabulously. Life can be good even after cancer.

Photo courtesy of author.