There are four significant cycles or stages in childhood cancer. The four cycles are: Healthy with no sign of cancer, Cancer Diagnosis and Treatment, then Survival, and back to Healthy. Notice that I did not use the term “cured.” “Cured” is not a term that is used much in the childhood cancer community.
Every day, 36 children like Max (of Max Cure) randomly fall into the battle with cancer. For the most part, childhood cancer, unlike some adult cancers, is not preventable. No one has actually found the cause. Many people chalk it up to a cell division lotto where a single cell divides incorrectly during the normal process of cell division that takes place millions and millions of times in a child every day. The National Cancer Institute (NCI) explains it this way, “Environmental causes of childhood cancer have long been suspected by many scientists but have been difficult to pin down, partly because cancer in children is rare and because it is difficult to identify past exposure levels in children, particularly during potentially important periods such as pregnancy or even prior to conception. In addition, each of the distinctive types of childhood cancers develops differently—with a potentially wide variety of causes and a unique clinical course in terms of age, race, gender, and many other factors.”
For each child diagnosed, all energies, efforts, and treatments are focused on beating the cancer and having that child survive. Let’s examine survival and what happens when a child is successful in fighting cancer.
When it comes to childhood cancer, and the treatment process, the truth is that not everyone gets to go home, most that do survive will never be completely healthy, and before it’s over, many families will suffer tremendous financial hardships. The average hospital bill for children with cancer is approximately $40,000 per day for each day of hospital confinement.
For the purposes of this conversation, let’s follow into the future an average group of 36 kids, ages 5 days old to 15 years, who were diagnosed today. Thirty-six kids in the United States are diagnosed each and every day of the year. Using known statistics, we can look into their future for the next thirty years of their lives.
Twelve to fourteen, one third of our 36 kids may be trying to survive a form of blood cancer. Leukemia is the one most people know about. The most common type of leukemia in children is acute lymphoblastic leukemia(ALL). This type has the highest survival rate of about 90%. NCI defines it as, “an aggressive (fast-growing) type of leukemia (blood cancer) in which too many lymphoblasts (immature white blood cells) are found in the blood and bone marrow.” Lymphomas are another type of blood cancer. This type of blood cancer actually forms a tumor. The most common is intermediate (aggressive) and high-grade lymphomas. While they are fast growing, they respond the best to intensive chemotherapy.
Six to eight of our study group may have brain tumors. The most common solid tumors are brain-tumors such as gliomas and medulloblastomas. Brain tumors are the most difficult to cure. Radiation to a child’s brain can significantly damage cognitive function, or if radiation is given at a very young age, it will limit their ability to read, do basic math, tell time or even talk. DIPG which kills 99% of its mostly five to nine year old victims, will claim at least one of this group of 36. The average survival is only nine to ten months from diagnosis. Eight to ten children may have other solid tumors known as neuroblastomas (attached to the nervous system), Wilms tumors (kidney), and sarcomas such as rhabdomyosarcoma (soft tissue, muscle), Ewings sarcoma, and osteosarcoma (bone) which is less common.
Most, if not all, of the 36 kids will receive some type of chemotherapy, radiation therapy, or surgery. You hear people talk about cutting, burning and poisoning our kids in order to try and save them. Parents don’t know what to do. Most feel so guilty using the only known cures available, but continue on in hopes that they will beat the odds. Advances are being made to develop less toxic treatments to improve the long-term outcomes of children with cancer. We need to advocate for more funds to be made available to bring fully researched and promising, but underfunded, therapies to clinical trials. We also need to promote genomic sequencing research for the purpose of developing personalized treatment protocols (precision medicine) and in diagnostics for early detection. Particularly in these economic times, we need to continue to let our lawmakers know the needs of our children. Please consider writing your representatives.
A large number of children will require a Bone Marrow Transplant (BMT) and it has its own set of adversities with which survivors will have to live. One problem with the BMT is that it may cause deafness depending on the age and circumstances of the treatment. We have no other choice but to follow the best path our oncologist recommends.
What Might Survival Look Like?
Now, that we have some idea of the make up of this group and what cancers they will encounter, it’s time to look at their futures. Keep in mind that this is a daily group of US children we are watching, a new group, similar to this one, appears in hospitals in the US each and every day, 365 days a year. So what will happen to these children?
Five of our 36 children will die within a few months to within five years of diagnosis. Some enter the hospital and never return. They die from the cancer and/or from the treatment itself. Five more will die in 6 to 30 years. Often, they develop a second type of cancer caused by the treatment they received with the first cancer. Sometimes the same cancer returns, but always with a vengeance. It is estimated that children in the above two groups (10 to 13 children) lost 67 years of life each, compared to 16 years of life for breast cancer victims which is more publicized and much more highly funded.
Seven of the original 36 children will survive at least 30 years, but will suffer life-threatening or disabling chronic health problems. Heart transplant, cardiac arrest, kidney transplant, and cognitive deficit disorders are just a few of the many serious health problems in this group.
Nine will survive at least 30 years, but will suffer mild or moderate chronic health conditions. Infertility, asthma, immune deficiency disorders, vision problems, memory issues, fatigue, hearing loss, depression, and other moderate health issues will be affecting this group of survivors.
Only ten of the thirty-six will survive at least 30 years and will not suffer chronic health conditions. The average age of this group is only 38. Keep in mind that if a child was two years of age at the time of diagnosis, they would only be thirty two and would still have plenty of time for a chance of major health issues occurring that could be tied to their cancer treatment.
First of all, let me acknowledge that any parent of a child lost to cancer would consider all the rest of the childhood cancer survivors as being lucky compared to their unimaginable loss, and I would have to agree with them. However, when you consider what each of the survivors goes through over their short lifetimes and the fact that they constantly live in the shadow of cancer’s return and will continue to do so for the rest of their lives, it is much too difficult for the writer to label any of them, or any other child affected by cancer, as being lucky or “cured.”
Author: Joe Baber
Joe is a retired retail executive whose Grandson battled high risk neuroblastoma and is currently a six year survivor. Joe is now an advocate for all children and families battling pediatric cancer in an effort to increase the awareness of cancer in children, adolescents and young adults.
The only way to change this is to find less toxic treatments for our children battling pediatric cancer, and ultimately find a cure for each of the 16 different types of pediatric cancer. Support the research needed to give our children a chance! Donate today!