The Reality of Childhood Cancer

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I used to think that childhood cancer was rare – maybe one in a million children. I’ll probably never even know someone with it. Right?

That is exactly what I had thought before my son was diagnosed with Langerhans Cell Histiocytosis (LCH). How on earth did I think that childhood cancer was rare?

Or better yet, how did my family think we would go our entire lives without meeting a child with cancer?

The reality is, CHILDHOOD CANCER IS NOT RARE!

Did you know when your child goes to school, 46 children are being diagnosed that same day? That’s two full classrooms a day in the U.S. alone. Over 800 children are diagnosed globally every day, with 400,000 children being diagnosed with cancer worldwide every year.

Does that seem rare? Not to me.

When my son was diagnosed, I thought the doctors would offer all kinds of treatments. Again, I was wrong. Did you know that since 1980, there have only been FOUR new chemotherapy drugs that the FDA has approved for childhood cancer?

Would you like to know why?

It is because children get different types of cancers than adults. Childhood cancer is made up of 12 major types and over 100 subtypes of cancer and is given less than 4% of the annual budget from the National Cancer Institute. They can’t possibly research every single childhood cancer based on that budget.

When my son was first diagnosed, LCH wasn’t even recognized as cancer. While that designation changed a few years ago, his particular type of cancer doesn’t get any research funding because it’s such a small subtype.

Seeing my son so close to the finish line, after a long 9 and a half years, is a blessing. However, cancer is the leading cause of death among children in the United States.

One in every five children who are diagnosed will not survive.

Chemo Buddies

My son has met so many friends while going through chemotherapy. We call them his “chemo buddies”. Over the years of treatments, he has lost several chemo buddies. We don’t have enough fingers and toes to count the number of friends he’s had to say goodbye to because of childhood cancer:

  • His friend, Wyatt, also had LCH. He was always so happy. His smiles would light up a room.
  • Sweet baby Charley was a character; you always knew she was coming. She was the one we got to see the most.
  • We met two friends at a childhood cancer retreat that are no longer here.

It’s hard not to feel guilty when so many families have lost their children to cancer. I still have my child while they have a deep hole missing in their hearts.

The Harsh Reality of Treatment

Two-thirds of childhood cancer survivors will experience at least one of these side effects as a result of treatment: Secondary cancers, heart/lung damage, infertility, chronic hepatitis, alternations in growth and development, impaired cognitive abilities, and psycho-social impact.

My son will have to live with the chance of getting these side effects. He already has difficulties with physical and occupational activities. Some of his chemo buddies do as well. Even though children make it through chemotherapy, it does not mean they are finished.

We will always have to worry about side effects from treatment.

My husband and I had to make the most difficult decision we had ever had to make when our son got diagnosed. No one wants to give their child poison to help them survive. No one wants to sign their child up for the potential risk of those side effects.

We all just hope and pray that our child is the one that makes it through it all.

I hope this has clarified some misunderstandings of childhood cancer and that you will share this information with others.

We need more funding for childhood cancer research.

If this has touched you and you would like to help, contact The Rally Foundation or Alex’s Lemonade Stand Foundation to make a donation or get involved.

 

 

 

 

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