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Childhood Cancer and The Trauma You Can’t Prepare For As An Adult

The long term effects they don't tell you about

Photo by Ryan Holloway on Unsplash

My niece is a childhood cancer survivor. She is now a young adult at the lovely age of 23 years old. Jess was diagnosed with Acute Lymphocytic (also known as Lymphoblastic) Leukemia at the young age of 5 years old. 

Jess endured approximately 2 years of treatment. When Jess was diagnosed they found cancer in her spinal column and brain. Most children when diagnosed early on have a high success rate for remission, Jess’s prognosis was a bit more grim because they did find the Leukemia had spread to her spine and brain.  When she was diagnosed they gave her a prognosis of a 70% survival rate and this meant her treatments were going to be more aggressive

Jess spent more time in the hospital the first few years than she did at home. She developed more than one critical infection due to her white blood count being so low. Jess was given chemotherapy for some time, along with radiation therapy to the spine and brain. She had surgical procedures to place and replace catheters for long term medications and her chemotherapy. To be frank, little Jess went through hell.  

Every child who develops childhood cancer will carry their experience with them for life. They are too young to understand why they are so ill and going through treatments that make them extremely sick. They are too young to understand why people are hurting them. They are too young to understand the implications let alone anticipate how their treatments will affect them later in life. Healthcare Professionals can’t even predict all the effects treatments will have on childhood cancer patients. 

The treatment of cancer may cause health problems for childhood cancer survivors months or years after successful treatment has ended. Cancer treatments may harm the body’s organs, tissues, or bones and cause health problems later in life. These health problems are called late effects.

Treatments that may cause late effects include the following:

Doctors are studying the late effects caused by cancer treatment. They are working to improve cancer treatments and stop or lessen late effects. While most late effects are not life-threatening, they may cause serious problems that affect health and quality of life

My niece Jess, developed early onset osteopenia (Osteoporosis) which is bone failure due to varying issues. It’s not uncommon for Acute Lymphocytic Leukemia to rob the bone of vital minerals and nutrients but many drugs and/or radiation therapy to the brain can also cause early onset osteopenia.  Jess also had growth failure and received Growth hormone therapy in the form of injections for quite some time. She managed to reach 4’10” and is one spunky, creative young woman. 

Jessie wrote a blog on Facebook since this is Childhood Cancer Awareness month. Some of Jess’s thoughts: 

Take me for example, as a rare side effect of my cancer I developed Osteopenia at the age of 5, and have had a history of compression fractures in my spine since then. Often times when I tell doctors this they stare at me in awe, and tell me that being so young they aren’t sure how to treat me since my medical issues are typically something you develop in your senior years of living.

 I personally know a few people in the childhood cancer community that have survivors guilt. They wonder why they made it over someone else, feeling like they were lesser of a person than the other, and they shouldn’t have made it. The thought of life and death is such a heavy subject for someone who has gone through or going through childhood cancer.

Through it all most childhood cancer survivors would tell you, yes, the effects of cancer negatively effect their lives daily, but they wouldn’t take back what they have been through. See it makes us stronger, from a very young age we develop a greater value of life. I love who I am today, scars and all, and I don’t know how I would of gotten here without going through childhood cancer.

Jess is a beautiful soul who doesn’t complain about what she’s been through, she puts others needs ahead of her own and lives life like an adventure. Jess has been a Cancer Camp Counselor since she turned old enough to become one. She gives back because at one time she was the cancer patient/survivor attending camp(s) and her experience was so positive she was determined to become a camp counselor as well. I think many childhood cancer survivors are the only people who can truly understand what younger children’s needs and fears are. They are there to help them temporarily forget and have fun while sharing empathy and hope.  Family dynamics play a large role when it comes to the child’s psyche. Jess’s parents were determined to keep her childhood as ‘normal’ as possible. They wanted her to experience as much as she was able to tolerate because they too, learned early that life is short and no one is guaranteed tomorrow. They skied together as a family before Jess was diagnosed with cancer and continued to ski when she was well enough to get back on the Mountains. Jess wore a back brace for quite some time because of the early onset osteopenia and still skied. Activities with semi-limitations became a new norm for Jess but she wasn’t missing out on life or focusing on her cancer when she was busy with her family doing what they loved. Many within Jessie’s extended family worried strenuous activities were too much for her. To our delight, we were proven wrong about the physical activities and Jess thrived.  Jess also has a younger sibling and childhood cancer affects siblings too. He was way too young to understand why life did a major flip flop over night. He was too young to understand why mom and dad had to be away from the home so much while he spent many nights with friends of the family. He was too young to understand the unspoken stress that was present. 
 Childhood cancer not only causes late term effects on the cancer survivor, it affects everyone in the family emotionally to one degree or another.  Families need a lot of support from the medical community and their external environment as well. 
Jessie is now 23 years old and graduated this year with her Bachelors in Graphic Arts. She was diagnosed with a learning disability after she received extensive radiation to the brain but she never allowed her disability to define her, she defined who she was and where she was headed in life. Jessie is also a very gifted artist.   There still are not a lot of programs available to Childhood Cancer survivors and it’s Jess’s hope along with many that there is more focus put on developing programs to help grown children to not only cope but to find resources for those who will be dealing with the life long effects of all the toxic treatments they went through in order to live!   Childhood Cancer survivors need a long term holistic approach for the mind, body and soul,  so they can continue to stay healthy and live the lives they dreamed of living long before they developed the dreaded “C” word.   As a society, we owe Childhood Cancer Survivors all the tools available because these children are Angels among us and have so much to offer society as well. They suffered enough during long term treatments. It’s my hope one day sooner than not, they will have more resources available to help them deal with the effects they deal with daily, it becomes their new norm but it shouldn’t have to be that way. 
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