24 Sep What About Me? Cancer’s Forgotten Heroes
We’re more than halfway through Childhood Cancer Awareness Month, and no doubt your news feed has been flooded with stories of brave kids fighting cancer.
I believe there’s another story begging to be told. It’s about brave kids, too. They’re cancer’s forgotten heroes.
While we’re campaigning for awareness and pleading for more funding and everyone is working overtime to put childhood cancer on the national agenda, at home and in hospital rooms across the country, parents with sick children have another equally challenging burden: How do they invest the time and energy necessary to bring life-saving treatment to a critically ill child while simultaneously validating and celebrating the healthy ones they have at home?
Over the last year, I’ve given away hundreds of dolls and met dozens of parents, and the thing that always strikes me most poignantly is the sweet little souls who aren’t in the hospital, who haven’t lost their hair, who can walk without being tethered to an IV pole.
They aren’t sick, but cancer is part of their story, too.
Their parents don’t mean to leave them out. They’re doing the best they can. Cancer is complicated. Most adults don’t even understand all the different subtypes and treatments and side effects. It’s a lot to manage. No two families have an identical experience. I wanted to find out how some of them are traversing the great divide–managing the round-the clock care of a sick child in the hospital while keeping their healthy kids happy and safe at home.
These are their stories: (I’ve changed their names because their words are painfully personal.)
Mom: What my kids might say is: they are constantly scared their sister will get sick and die. Their worst fear. They don’t like having their world turned upside down and their parents torn away from them. They just want to be kids and have a happy normal life. Unfortunately that will never happen again for them. They now know too much and have grown up too fast. Bree is scared she will get cancer one day. She doesn’t understand why her donation of bone marrow didn’t save her sister’s life like it was suppose to. Cady misses her sister and best friend. She wants her sister to have energy again and be able to play like before. Siblings will forever carry scars from a cancer diagnosis. But hopefully there is some good that can also come from it. I pray they learn to lean and trust God more. I pray they learn to be compassionate and loving towards others with disabilities and illnesses. I pray they learn to take nothing for granted and to be forever thankful for their blessings. I as a mom just pray they can come out of this not permanently damaged mentally but instead a stronger and happier person. It is a burden I carry daily as I try to care for my cancer child and also be a good mom to my other children.
Another friend told me about her son who was ten years old when his sister was diagnosed with cancer.
Mom: We didn’t mean to, but we expected him to act like an eighteen year-old. At the time, he showed that he got it. He never complained that the world revolved around Bethany. Deep down, though, he was resenting everything. Almost five years later, I realized that it had actually affected him. Aiden was self-sufficient for the most part. For six straight months, Bethany received gift cards and presents nearly every day. Aiden got nothing. Sympathy, yes, but as a ten year-old, he didn’t understand why his sister was always getting something new to play with. People just didn’t think of the fact that it was hard on him, too. There was no one to put their arms around him and say, “I understand.” No one ever said, “I’m sorry.” Even now, Aiden is always looking for ways to outshine Bethany, even if it’s just for a moment. The struggle is everyone’s, not just the kid with cancer. At the time, we also had an infant. She had never had a bottle, a babysitter, or slept anywhere other than her own crib. On hospital days, I’d pack a big Rubbermaid tub filled with diapers, blankets, clothes, formula, and baby food. I never knew who was going to pick her up from the hospital and take her back to their house for a few days. It actually took her a long time to walk because she spent so much time at the hospital, and she couldn’t practice crawling there! She spent most of the time in the stroller. She’s actually fared better than her brother. She doesn’t remember her sister having cancer, but it’s definitely shaped her into the person she is today. That baby is in kindergarten now, and she has more empathy than most of her friends. She asks lots of questions. She’s not afraid of kids who are different. Diagnosis is a family diagnosis. Every kid is affected, not just the one who has cancer. We didn’t see until years later the impact it made.
Cancer is a trauma. And trauma has repercussions. Even when the sick child goes home and life gets back to normal, the new normal doesn’t look like the normal that came before the diagnosis. Nothing will ever be the same again.
Mom: Christopher wasn’t really sure how to digest all of this. To be honest, we were not too sure how to explain it. Although we had experience with cancer in our family and my dad passing 10 months earlier from leukemia, it still wasn’t going to be an easy task. We were very fortunate in that we were at an amazing hospital. The child life team there does amazing things, and they were able to walk us and Christopher through every bit of what we were about to start. They answered all his questions, made blood soup with him to show him the functions of all the good and bad cells in Sydney’s blood and explained how and what the medicine would do to his baby sister throughout treatment. During treatment, Christopher did become distant. He developed his own set of issues and started therapy where he was later diagnosed with depression and biopolar disorder. All of which doctors have connected to what he has been through. Christopher and Sydney have had their share of normal sibling issues, but they have a stronger bond than most. Christopher protects her a lot but he also becomes envious of the attentions she received and often still receives. Christopher was NEVER left out of anything, and family and friends always nurtured Christopher throughout Sydney’s treatment but because of his confusion he didn’t understand and acted out. Now that Sydney is 10 months post-treatment our life is beginning to get back to normal, but we have found that Christopher’s issues have only progressed and become worse. He has very little faith and is often way too hard on himself. His depression is constant and hard to control. Cancer doesn’t only affect the child but also the entire family. I hope that the blog I created and updated daily will one day help Christopher and Sydney understand how very strong they both were and are.
Some kids are able to overcome adversity with almost superhuman strength. It’s rare, but it can happen.
Mom: This battle has taken it’s toll on us all. My daughter has been forced to summon her inner strength. She watches and endures her brother’s sickness from the sidelines while her family is torn away from her everyday. She pushed off the tears as we left for Houston and walked brave and tall into the world of normal when nothing, nothing was normal. The large focus has been, has had to be, on her brother. It is too much to ask for a 13 year old. Jenna has grown and changed this year in a way we could not have planned. She has matured, becoming aware that life is precious and fragile. She has chosen to live in love and to believe that God is good. That people are good. That life is good. While her father and I would rather those lessons been learned in a different light…we are SO PROUD of Jenna’s strength and the depth of her love.
Most of us will never set foot inside a hospital. Instead, we manage carpool, help out in classrooms, have play dates, and make dinner for our families. It’s easy to pretend that cancer doesn’t affect us because it’s miles away, tucked safely inside a sterile building.
But cancer doesn’t live in the hospital. It lives next door.
If you want to help, do something for the kids at home. More than hearing us tell them that they’re strong and brave, they need to hear us tell them that they’re important. While many families affected by cancer often grow closer, others simply implode. The ones that fare the best are also the ones with the most support.
At Forever We, our mission is to nurture the opportunity to live together with meaning and purpose. We know there’s lots of ways to do that. Our dolls and books facilitate conversations, but more importantly, we just want families to know that we are with them.
Will you help us?