When The Battle Doesn’t End With Remission – An Unfortunate Childhood Cancer Reality

Each day in the United States, 43 children will be diagnosed with cancer.  Every.  Single Day.  Shocked parents will hear that THEIR CHILD HAS CANCER. Grandparents, siblings, aunts, uncles, friends, neighbors and communities join in the fear and sorrow.  The impact is far and wide.  One in five children will not survive.  Of those who do survive, the story sadly does not end with remission.

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Advances in childhood cancer treatment and increased survival rates are cause for celebration.  Unfortunately, far too many children still lose their lives to cancer, the actual treatment is horrific, and those who do survive often face serious, lifelong and debilitating side effects.  In fact, as many as two-thirds or more of all childhood cancer survivors have medical (and emotional) problems as a result of their treatment.  Some statistics elevate the number of children with post-cancer medical issues to a staggering 90%.  Children face unimaginable pain and suffering simply to survive their diagnosis.  Remission is a blessing to be sure.  However, the frustrating and heartbreaking reality of post treatment medical issues is not well known or discussed.

Fighting cancer at any age is hard.  Pain, fear and enormous difficulties become center stage. People tend to find strength in the hope for survival. When a patient does achieve remission, many believe this is the happy ending.  For so many, though, the battle has simply changed.  Children are especially affected by this unfortunate reality.

Some of the common after effects of childhood cancer treatment include:

  • Second cancers
  • Heart problems
  • Reproductive problems
  • Growth, development and hormone problems
  • Severe chronic pain
  • Lung and breathing problems
  • Learning and memory problems
  • Emotional problems
  • Digestive issues
  • Mobility challenges
  • and much more

Several factors contribute to cancer care difficulties unique to children.  First, dangerous and toxic treatments are given to growing, developing bodies. Brains, organs, bones and soft tissue are not yet fully developed.  Chemotherapy, radiation and surgery can interrupt and damage appropriate and necessary growth.  It’s easy to imagine the adverse long-term consequences for interruptions in brain development, bone and tissue growth, organ maturation, and even emotional security.  Second, there are very few available treatments designed specifically for children. Children’s bodies are not suited for adult treatments, but that is usually the only option. Shockingly, children are still receiving treatments developed during World War II.  In two decades, only four new drugs have been approved by the FDA specifically for children. There are simply not a lot of protocols designed for children and havoc results within their bodies.  Third, most children are diagnosed into the late stages of their disease.  Unlike adults, there are no screenings for the various potential cancers in children.  They are also unable to articulate symptoms well, nor advocate or even understand the need for additional medical inquiries when appropriate. Diagnosis during the late stage of cancer makes it much harder to cure and requires longer and stronger treatment. These factors all combine to cause potential medical complications for children after cancer care and remission.

My son is a childhood cancer survivor who falls into the category of those who suffer from treatment-related long term effects.  Jake was initially diagnosed at age 5, but has continued with ongoing medical care for more than 15 years now.  His post-cancer condition is worsening and no improvement is in sight.  When Jake was 5, a partial foot amputation was required to excise an expansive malignant tumor. Doctors had to cut through large amounts of bone, tissue and nerves.  As he grew, the amputated area presented problem after problem. Additional masses appeared, scar tissue impeded movement, arthritis developed, stress fractures occurred, nerve damage resulted, phantom limb pain wreaked havoc, mobility issues arose, and more.  One necessary surgery after another (20 in all) both helped and hurt him.  Unfortunately, the last surgery failed to help and also created new issues.  Jake developed four inoperable neuromas in his leg and foot. These are benign nerve tumors that cause significant burning pain. He also developed Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS) which is a chronic pain condition involving a malfunction of the nervous system with resulting severe, ongoing pain. My son’s cancer is in remission and we are incredibly grateful, but his life has been heart-breakingly altered from the battle. He will face significant medical issues for the rest of his life due to a cancer diagnosis at age 5.

Jake’s story is unique in details, but fairly common in that the majority of children are permanently and adversely affected by cancer care. Hopefully the more people learn about the ongoing struggles and inappropriate treatment options for children with cancer, a stronger push for research funding and overall support will result.  Currently only 4% of federal funding is allocated for children’s cancer (pending legislation will slightly improve this figure, but not by much).  Many states provide NO funding at all for childhood cancer within their state cancer plans.  Pharmaceutical companies do not provide much funding for childhood cancer research and the private sector is unable to gather the necessary funding and support despite widespread efforts to do so.  Children are precious. Children deserve a chance to grow up, thrive, find happiness, contribute to society and live full lives.  We must find a way to give them this chance. We must find better ways to treat children with cancer.  Children deserve to not only survive, but to thrive.

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