It took less than three seconds one sunny Saturday afternoon for the doctor to tell us our one-month-old baby had leukemia. “But … how can a baby have leukemia?” I dully asked. I would learn all too soon—within hours of entering the pediatric oncology ward—that not only do babies get leukemia, they get tumors of all kinds. And although leukemia (a cancer of the blood) is the most common of childhood cancers, there are children of all ages with an unthinkable array of unpronounceable cancers—unpronounceable and unthinkable until it happens to them. Then the parents and the kids themselves become experts on their own special brand of cancer with a speed that would make the best med student envious.
Just after Tyler’s diagnosis, I went through a period of feeling that I was terribly unusual in having a child with cancer. Across the general population, thank goodness, this was very true. But on the pediatric oncology ward, it suddenly seemed there were far too many children there, with their parents present to offer words of encouragement and solace. Truly every child with cancer is special … and incredibly brave … and amazingly resilient.
It is simply devastating to have your previously healthy child diagnosed with cancer. It is heartbreaking to think of what they are missing in the outside world while in hospital. It is gut-wrenching to watch them bravely weather the barrage of treatments that will, with luck, eventually cure them. And it is desperately, desperately sad to acknowledge that, in a few cases, there will be no cure.
The medical care here in Japan is unquestionably of the highest quality. However, because of Japan’s risk-minimizing policy of keeping patients in hospital for most of the duration of their treatment, you could be looking at a nine-month to one-year (nearly two in our case) hospital stay. Most kids with cancer are not in a constant state of misery. They make a darn good effort to live and enjoy life, in whatever way it presents itself on a given day during treatment. But days in hospital pass slowly; distraction, a shoulder to lean on, and an air of hope become one’s sustenance. Even a healthy three-year-old is thrilled with a new toy or going to a new place. Imagine how little it takes to break the monotony for a child who is day-in, day-out on one ward in a hospital, or, as is the case after chemotherapy drugs are administered, confined to one bed.
Even as a non-Japanese in a Japanese hospital, often bumbling along in my best efforts at communication, I was given a huge amount of love and support from the hospital staff and other parents. For this I will always be extraordinarily grateful. But there is a limit to what these people can give: nurses are busy and other moms were as scared and exhausted as I was. Furthermore, no one outside the hospital—no one with healthy kids—could really understand how we, with very, very sick kids, felt day to day. And nor should they be expected to. Yet, for many parents in my situation, the desire to talk to someone is overwhelming. The kids’ desire to have something to break the monotony is also overwhelming. And everyone’s hunger for good news from “hot-off-the-press research” is palpable.
Children undergoing cancer treatment need and deserve as much as we can give … and so do their parents. The Tyler Foundation – Shine On! Kids wants to help Japan do even better, by helping these kids smile, supporting their parents, and giving them hope through offering funding for their doctors’ research.
Cancer has taught me many lessons—many which sound like clichés at first, but ultimately ring very true. One of the most fundamental is to take life day by day. That is where the Tyler Foundation – Shine On! Kids begins: one step at a time, one day at a time, we will Shine On!
We should stop to think how fortunate we are. Even in that which is sad, short and out of our control, something good will likely emerge. And we should be grateful. The Tyler Foundation – Shine On! Kids makes a difference in numerous people’s lives, many of whom are inexplicably subjected to cancer at an early age. And the sponsors, organizers, supporters, participants, and celebrities associated with our events also benefit by making a difference to others. What a privilege to celebrate Tyler’s short life by bringing together motivated people to engage in interesting activities while helping others! Thanks for this opportunity, Tyler, and Shine On!
I’m Masaaki Kumagai of the Division of Hematology/Oncology at the National Center for Child Health and Development. Since joining the Center in 1986—then called the National Children’s Hospital—I have examined nearly 1,000 child cancer patients. I also have had the opportunity to engage in child leukemia research at St. Jude Children’s Research Hospital, a leading pediatric treatment and research facility in the United States, for two years starting in 1993. At the same time, I was exposed to the latest clinical science in a country that leads the world in cutting-edge pediatric cancer research.
Though forty years ago children with cancer were considered incurable, enormous progress has been made in the ensuing years and today more than 70% of patients recover. That said, there is still an enormous burden on patients fighting the disease and their families, as patients undergo severe treatment and the severity of the treatment often advances. On the other side of the coin, there are still patients today with highly intractable cancers. It’s lamentable that we doctors lose about 20% of our patients. Pediatric oncologists are advancing research to find treatments and cures for intractable cancers. At the same time, we are looking for ways to reduce the hardships on patients and their parents in order to make each day a little brighter in their fight against cancer.
The Tyler Foundation – Shine On! Kids was established to commemorate one of our favorite patients, Tyler Ferris. In August of 2003, when Tyler was just shy of one month old, he came down with infant leukemia. In one cubic millimeter of blood, Tyler had a proliferation of 1.5 million leukemia cells—a number that the measuring device practically could not count.
The initial treatment combined with artificial respiration and blood dialysis in the ICU proved effective—the number of Tyler’s leukemia cells continued falling until they were no longer detected under examination. Later, with a transplant of Tyler’s mother’s bone marrow, our team was very hopeful for Tyler’s recovery. However, nine months after the bone marrow transplant, Tyler’s leukemia relapsed. Then, in June of 2005, when he was almost two years old, the light went out in Tyler’s short life.
Tyler and his family, as well as those of us on his medical team, joined forces to beat Tyler’s cancer … Unfortunately, we were unable to reach our goal. We were, possibly, just a step away from succeeding in our efforts. However, in order to close that gap, more support from individuals and more research are necessary. One of the ideas behind the Tyler Foundation is to provide a little support to the people working to save the lives of children with cancer.
However, the Tyler Foundation was set up to provide much more than just support for research. It promotes programs that work to bring relief and comfort, even joy, to patients and their families. Cancer treatment is tremendously stressful for patients and their families—it can transcend physical and emotional pain … For the patient, it’s the pain of daily medicine regimens and endless examinations and the despair in not being able to go home … For the parents, it’s the anxiety over whether they’ll lose their child, the pain of leaving their child in the hospital alone, and conversely the difficulty of “carrying on” at home while their child is in hospital. The Tyler Foundation – Shine On! Kids was established with the aim of lightening this burden on patients and families and making every day in the hospital a little brighter.
I’d like to conclude my message by sharing with you what I always encounter when working with young cancer patients. These children do not need pity. Of course, they get depressed and angry, but like all children they are also full of life and happiness. Just like the healthy children many of us are raising, these cancer patients laugh and get into trouble. And it’s because these children entertain us and cheer us up that we doctors and nurses are able to carry on our daily work to make them better.
Tyler, with an almost surprising bonhomie, spent the better part of his life smiling and laughing. It was his smile that really gave my colleagues and I the courage and push to give our all to his treatment.
Tyler left behind his legacy in the Tyler Foundation – Shine On! Kids … I’d like to ask for your support to give joy and some hope to children with cancer.