September is Childhood Cancer Month

In January 2011, I heard the dreaded words no parent ever wants to hear: “Your child has cancer.” The thoughts that go through your mind on hearing such a statement are so terrifying, they are worse than any horror story you will ever read. Along the initial dread, you feel a sense of disbelief. There was no way my little rough and tumble three-year-old was just handed a death sentence. But as I watched him laying there in a hospital bed hooked up to machines, the fear came back. I couldn’t lose my baby boy, I just couldn’t.

September is Childhood Cancer Awareness month. Many people think that childhood cancers are rare, but they are the leading cause of death by disease among children. According to the CDC, cancer has a higher death rate (57%) than all other diseases combined. Over 15,000 children get diagnosed with some form of cancer a year. This is a staggeringly high number, and it doesn’t seem to matter the child’s race or family’s socioeconomic status. Sadly, one in eight diagnosed children die each year.

After a series of tests, my son was officially diagnosed with Pre B Acute Lymphoblastomic Leukemia (ALL for short). ALL is the most common childhood cancer, accounting for about 20% of all diagnoses. This is followed by brain cancer at 18%. Non-Hodgkin Lymphomia only accounts for 7%. After my boy’s initial marrow extraction, he was admitted to the hospital in a ward specially designed for cancer children. There were about 30 rooms in this hall, with a dedication staff of cancer specialists. Sadly, most of the rooms were full.

There are many different treatments to fight cancer: chemotherapy, radiation, surgery, bone marrow transplant, and a few others. My son was given chemotherapy, since radiation cannot be used to fight leukemia. Leukemia is the cancer of the blood, so it doesn’t occupy a distinct area. For boys, the chemotherapy treatment of an ALL patient is 3 ½ years. Luckily (or sadly depending on how you want to view it), his cancer treatment was planned out from years of research and discovery. The doctors know what is the most effective treatment for getting rid of leukemia cells. I knew the first month was this treatment and months 3-6 were these treatments and so on.

While the chemotherapy drugs are effective, they do destroy the rest of the cells in the body. Cancer children have no immune system, making them easily susceptible to flus, colds, any sort of bacteria or virus. And since their immune system has been compromised, they cannot receive any sort of immunizations, making them even higher risk for disease. If a cancer child gets a temperature of 101, a trip to the ER is required and more than likely, a hospital stay will ensue. We were lucky that my son only got sick a handful of times. I know some of his clinic friends weren’t so lucky.

Fifty years ago, a leukemia diagnosis would have been an immediate death sentence. Today, that is not the case. It has been estimated by CureSearch that approximately 90% of children with cancer will survive their initial therapy. This is up from the meager 10% it was back in the 1970s. Each year a cancer child survives in remission, the chances of reoccurrence diminish.

Chemotherapy is an effective solution to cancer, but it comes at a huge price. 60% of child cancer survivors will have other long term side effects. Most will have issues with muscles, infertility and some will have another form of cancer later in life. I know the chemotherapy has affected my son. They have shown me an MRI of his brain where the white matter has leaked through the grey matter. They were able to show me on the scan where the chemotherapy has actually eaten away parts of his brain. He has difficulty with reading and writing, and has developed severe ADHD. There are times he struggles to tell me something simply because he can’t think of the words fast enough to tell me. And while he might have still had some of these problems, I am sure the chemo has compounded them. They say the chemo shouldn’t affect his reproductive system since he was so little during treatment, but there is a higher possibility that he will never be able to have children.

My son goes back every three months to the clinic to check his blood counts. He has been in remission and off of chemo for 3 years. I can never say that he is cancer free, since leukemia never leaves the system, it just goes back into controllable amounts. He will continue to go to the clinic every three months for another year, then we will switch to yearly. He will continue his yearly visits for the rest of his life.  They gave me a list of what I have to check for and what a doctor should check for every year. It isn’t as simple as you or I getting a physical. He will have to have his kidneys checked, his heart checked, his reproductive system checked and his motor skills checked among other things. Every year. For the rest of his life.

While my boy was on chemo, I used to cringe when he would sneeze, since that was sign of an impending cold and hospital stay. Now, I am super paranoid about bumps, lumps, and bruises since they could be a sign of returning cancer cells. On an almost 10-year-old child, it’s hard to determine which are normal bruises and which are scary bruises!

I try to stay current with information about leukemia treatments. My son’s blood is actually being used to help research future cures. The FDA recently passed the use of CAR-T cell therapy for use in leukemia kids. This will actually take the patient’s own immune system cells and use them to fight the cancer. If it is indeed as successful as the trials were, this will be life changing for so many children. No longer will the after effects of chemotherapy be a problem. The final FDA ruling for this therapy has been set for October 2017.

As I watch my son run, I am thankful he is able to play. He’s a little banged up mentally, but he is still here. His ordeal has given me a whole new perspective on everything. You learn to be thankful for smaller things, even something as small as the sneeze being only allergies. I know I talk about my son and his leukemia a lot. But his life will never be “normal”. And I am forever reminded of the day when I learned he was sick and given his fateful diagnosis. We were touched by death, but it has taught us how to live.

To listen to his sweet voice, make sure to check out our ad for Castle Rock Radio. Then listen to our other episodes!

Lori Michelle is the Editor-in-Chief for Dark Moon Digest and the CFO and layout guru for Perpetual Motion Machine Publishing. She is also the book formatting specialist for several other independent horror publishers. At night, she teaches dance classes to a group of baton twirlers. The rest of her time is spent mostly telling her son to quit bothering the dogs.