Childhood Cancer Awareness Month is a time when we strive to heighten awareness, but I’d like to share with you why it is so very important. This September brought much sadness to our team at Nebraska Medicine, as we said goodbye to three kids who lost their battles in the first week of Childhood Cancer Awareness Month. These three all fought valiantly and without complaint – for years. Their families talked about how they never asked, “why me”… they only continued to fight and live their lives with cancer. Each of these kids shows us why research dollars are so important.

Our first warrior was 24-years-old. Why was he a pediatric patient? Because his journey began 13 years earlier and he had “a cancer that just wouldn’t go away.” He died three days after his 24th birthday. He made the choice, at the age of 24, to take control and not seek any more treatment, as it would have not been curative. He had done surgeries, chemo, radiation, radiation, and then some more radiation throughout his battle. He decided that he wanted to control how he left this earth… spending his last days with friends and family, laughing and loving. This is exactly how he died – the same way he had lived – laughing and loving. I had originally met him at Camp CoHoLo (local camp for kids with cancer and blood disorders). I knew him as an amazing young man with the gentlest heart who treated everyone with compassion and loved to make people laugh. I watched as his brain tumor changed his physical appearance and altered some of his mental abilities, but what did not change was his sense of humor, his love of and compassion for people, and his amazing spirit. He donated his brain to be studied, “so that no one else will have to go through what I went through.”

Our second warrior was 13 and she died a few days before her 14th birthday. Her battle began in the second grade. Her treatment included chemo, radiation and a bone marrow transplant, which was successful at curing her initial cancer. Unfortunately, sometimes the treatment that is used to cure cancer can sometimes cause a different cancer and this is what happened to her. She developed a totally DIFFERENT cancer that was actually caused by the very treatment she received to cure her initial cancer. Her most recent battle lasted more than a year. If you don’t know anything about bone cancer, it causes excruciating pain and can be extremely difficult to manage with medication. Through it all, she filled her life doing as many of the normal teenage things as she could and inspired everyone around her.

Our third warrior was 17-years-old. He was first diagnosed at the age of eight. He relapsed at the age of 11 and received a bone marrow transplant. Although his cancer was eventually “cured,” he suffered from devastating side effects from his treatment. You see, he did not die from cancer, he died from those devastating side effects that destroyed his body until it could no longer sustain. If you ever had the pleasure of meeting him, you’d have thought he was perhaps eight or nine years old, because his growth had been stunted due to the drugs that killed the cancer cells. Much of the time, you’d have also thought he had some strange skin disease and perhaps would have feared that he was contagious. However, had you had the opportunity to talk with him, you’d have seen that he was a young man wise WELL beyond his years. He had this delightful sense of humor, a gentle soul and was always thinking of others. He was a man who accepted whatever God had given him and was grateful. He never complained about his life or his disease or about how all he really wanted to do was to just be like everyone else. He was never angry when his mom had to lift him out of bed into his wheelchair, or rub his legs when he had horrible leg cramps, or when he had to be pushed in his wheelchair by family or friends. He accepted his life and was grateful. He had the opportunity to attend World Youth Day in Poland this July and was able to make eye contact and exchange smiles with Pope Francis.

Only 4% of U.S. federal cancer research funding is dedicated solely to childhood cancer research. Then again, pediatric cancers make up less than 1% of all cancer diagnoses, so that’s fair, right? Think again. Let’s look at it from a different perspective; let’s look at it in terms of the number of years of life lost. The average age of an adult diagnosed with cancer is 66 and because the average life expectancy is 77, the number of years of life lost for an adult is 11. Meaning, on average, if they lose their battle right away, they would lose 11 years of their life. The average of a child diagnosed with cancer is 6-years-old. If we apply that same principle with the average life expectancy of 77, the number of years of life lost for a child, is 71 years. Meaning, on average, if a child loses that battle right away, they would lose 71 years of their life.

Every September, I fill my Facebook posts with statistics to educate and infuriate my friends. Why would anyone choose to infuriate their friends? Because in order for change to happen, there needs to be awareness. Awareness of the lack of funding. Understanding that what we’re doing is not enough. Posts have included such things as:

  • 43 children are diagnosed with cancer every day in the U.S.
  • Worldwide, a child is diagnosed with cancer every three seconds
  • In the past 25 years, only TWO drugs have been developed specifically for children
  • Most cancer drugs were developed for adults and are just given to children in smaller doses
  • More than 95% of childhood cancer survivors will have a chronic health problem as result of their treatment and 80% will have severe or life-threatening conditions
  • About 60% of all funding for drug development in adult cancers comes from pharmaceutical companies. For children – almost none. There isn’t enough PROFIT to be made because pediatric cancers make up less than 1% of all cancer diagnoses.
  • Nearly 2,000 children die of cancer every year in the U.S.

Working in pediatric oncology has its ups and downs. Thankfully we have way more ups. People ask how we can do it. We reply, “How can we not?” Do deaths ever get any easier? Absolutely not.Do we ever know the right words to say? How can we? Are there ever any words that can take away the haunting emptiness that comes from losing a child? I don’t think so. We can only be there for the families, sharing in the laughter as we remember those stories that make us laugh, but eventually always lead us back to tears. We can share in those tears. We can help them know that they did EVERYTHING they possibly could and that we are always here if they need to reach out. We can pray for them as they muddle through the days, weeks, months and years trying to understand who they are when their lives are no longer consumed by cancer and its treatment.

Unless you have lived it, no one can know what it’s like to live daily with the worry of white counts and platelet counts, germs, infections, fevers, fear of relapse, repeat scans, lab draws, and doctor’s appointments. No one can understand how much cancer affects the entire family; the brothers and sisters who can sometimes feel “left behind,” the unexpected financial stress that comes with treatment (gas expenses of traveling to and from, hotel and food expenses, additional daycare fees for other kids, co-pays and more), having to quit a job or cut back to part-time because of the incredible amount of time needed to care for your child, the financial burden that results in having to suddenly have a reduced income, the strain that a cancer diagnosis can put on even the most solid of marriages/relationships, the unexpected hospital admissions, the family plans that often have to be canceled weeks in advance or even minutes before, the “I love yous” that have to come through the phone instead of in person, because you’re at the hospital instead of at home… the guilt that can accompany that as well.

We dream of a day when cancer no longer exists and pray that it comes sooner rather than later. We long for the days when no parent will ever have to hear the words, “I’m sorry, but your child has cancer.”

I received an invitation to a high school graduation for one of my patients who recently completed 2 ½ years of treatment for lymphoma. The invitation was address to, “Little Debbie Sunshine Wagers,” which made me smile and also brought tears to my eyes. Not tears of sadness, but tears brought about by blessings. I started to think about the relationship that I’d built with this patient and his family over the past three years and what a blessing it has been and what a blessing my career has been in my life. What is it that I do, am I a nurse? No, I work in the cancer center as a child life specialist. For anyone that doesn’t know what that is, I’ll take a moment to explain. Child life specialists are the part of the healthcare team whose job is to take care of the “emotional part” of the healthcare experience. We help children to understand their diagnosis, prepare them on their developmental level for what will be happening, and help them develop ways to cope with what can sometimes be scary, painful or unpleasant experiences. We also help them remember that no matter what else is going on with their bodies and in the world around them, at the heart of it all, they are still kids and teenagers. We do our best to help them move forward and help their families bring as much normalcy back into their world as is possible. You may have heard it said that play is a child’s work and that couldn’t be more true. Play is a universal language and it’s spoken by everyone in the world, and likely even beyond.

I’ve been practicing in child life for over 25 years and it’s hard to put into words what is so amazing about my job, but I’ll try. When anyone is diagnosed with cancer, it’s beyond devastating, even if there is a good prognosis attached to it. But, when it’s a child, it goes into a different category. How can that truly be fair? I am always touched by how our adult cancer patients talk about how unfair it is that children get cancer and have to go through this horrific treatment, and this is while their very own bodies are being riddled with chemotherapy. How really is any of this fair? When people ask what I do for a living and I explain my role, inevitably they say, “Oh my, it takes a special person to do what you do.” I’d like to explain why I think that I am the one who is blessed.

I can’t imagine anything more devastating than receiving the diagnosis of cancer, or worse yet, that your child has cancer. If you’re a young child, you don’t even know what cancer is, you just know it’s bad because it makes everyone cry. And if you’re a child who is at the age of magical thinking, you probably think that somehow you caused it. Our job is to help that child understand that it’s not their fault and teach them what the medical staff is going to do about it. I use dolls, pictures and real medical equipment to teach children about what is happening and try to take away some of that “fear of the unknown.” Using real medical equipment helps kids have the opportunity to see and use those items in a non-threatening way and allows them to play through what has or will happen. Looking into the face of a child or a teenager and empowering them to understand what is happening is an amazing feeling. While there is still fear, I believe that knowledge is power. Giving children the power to understand the best they can, what their role will be in battling this disease, and how we’re all going to work together as a team, is essential. Empowering the families to understand is also very powerful and watching them step forward with amazing inner strength that they never knew they had is, for lack of a better word, inspirational.

Teenagers probably have an even more difficult task ahead of them because developmentally they’re better able to understand exactly how big their challenge is and how long their journey can be. It’s hard enough to be a teenager today and now we’ve just added “losing your hair, feeling crappy, missing school and activities, not being able to participate in sports and other extra-curricular activities, and not being able to be a teenager and hanging out with your friends when you want to. We just made you different when all they really want is to fit in. Wow. Who dealt that hand, right? However, I will tell you that it is extremely powerful watching a 16-year old girl go from crying when she’s devastated to learn that her hair will fall out, to seeing her three months later, “rockin’ that bald head” because she knows that it doesn’t define who she is. Once again, truly inspirational.

So here is the blessing; from the very beginning of their diagnosis, on what is probably their darkest day, these families invite us into their lives. While I’m sure they all feel blessed to have such an amazing medical team, I believe with all my heart, that we are the ones who are blessed…by each and every child and family member we meet. Each patient and each family member brings with them, their own unique and special gifts. We really do learn something from each and every one of them and these things, these lessons that we learn, help us to provide even better care to that next child and family. We have no idea what it’s like to “walk a mile in their shoes,” but what we can do, is help them tie their shoe laces, point them in the right direction, maybe tell them where those long dry spells are going to be and even offer them a drink of water along the way. We get to watch them find that silver lining, even when the outcomes aren’t what we all wanted, but we get to watch them discover that special gift. Kids always talk about how much they learned about themselves along the way and how thankful they are to have such an amazing and supportive family and community. We hear parents talk about how much they learned about their child, themselves, their other children, their family, and their community. We get to be first-hand witnesses to the love, the dedication, the sacrifices and strength of families. We can walk alongside families, but they are the ones that have to walk that journey and they inspire me. Daily.

I used to get offended when people would see carrying toys to a child’s room, or playing cards or making play dough with a child, and they’d say, “Gee, I wish I got paid to play all day. You went to college to learn how to do that?” I would always want to reach out and with all the love in my heart, smack them upside the head and tell them about all the other parts of my job, but I never did. I’d just smile and tell them that I have the best job in the world, because I do. I’ve learned in all of my years in child life what is important; what is most important is the relationships that you build with people.

I remember one time I saw a patient out in “the real world” and she was with a group of friends. She was so excited to see me and introduce me to her friends and I was happy to see her out in her natural environment just being a teenager. This particular patient was a teenage girl who I’d done some pretty “intense” child life interventions with. She’d undergone nearly a year of chemo and had an extensive surgery to remove a tumor from her leg. She’d been confined to a wheelchair and on crutches for the duration of that time. We spent a lot of time talking about “medical stuff,” how much cancer sucked, and had done a lot of fun things together, because after all, “play IS a child’s work,” no matter how old they are. When she introduced me to her friends, she didn’t say, “This is Debbie, the child life specialist who taught me about my surgery and helped me afterwards.” She said, “This is my friend, Debbie. We used to bake cookies when I was in the hospital getting chemo. She was my child life specialist.” That was one of the most influential moments of my career. No longer do I choose to be offended when people say, “You get to play with kids all day?” That defined for me the very essence of why I come to work every day. It’s all about the relationships we build. While we baked cookies, or played cards, or played Guitar Hero (which I was pretty good at for an old lady), we were building and nurturing that relationship. It is sometimes because of those relationships, that
I’m able to find out a piece of information that maybe that child hasn’t shared with anyone else yet. If that piece of information is something that needs to be addressed, I can tactfully and without breaching their trust, find some way or some one to address it.
Sometimes we just can’t do anything to make someone feel better and nothing hurts your heart more than that. What I’ve found is that sometimes it’s just doing those little things to make someone smile, or maybe even just your very presence, that matters the most. Sometimes it’s just skipping into the treatment room with a basket of snacks and armed with a witty comment that brings a smile.

Sometimes it’s just sitting silently in a room with a family when they get bad news. Sometimes it means being a cheerleader, or a surrogate parent, or a mentor, or a playmate. Whatever it means, it’s based in building that relationship. I’ll end with my favorite quote:
One hundred years from now,
It won’t matter what car I drove,
What kind of house I lived in,
How much I had in my bank account,
Nor what my clothes looked like,
But, the world may be a little better,
Because I was important in the life of a child.
~ Unknown