While there are obvious visible signs of cancer, the unseen effects of cancer are likely the most damaging long-term. Cancer patients can experience side effects for years, and in some cases, the rest of their lives. Cognitive impairments fall into this category. They have a lasting impact on a cancer patient’s life, particularly the life of a child who has their whole life in front of them…now as a cancer survivor.

Impact of Cancer Treatments

Chemotherapy is a harsh treatment that ravages the body bringing about cruel side effects. It’s a battle without limits or boundaries. It is the most taxing fight anyone will physically endure: hair loss, weight loss, lack of appetite, intestinal and kidney disorders, nausea, mouth sores, chronic tiredness, septic shock, and the list goes with even more severe side effects. A cancer patient’s physical struggle is horrendously challenging and painfully apparent to those around them. However, a cancer patient’s cognitive deficits from chemo are just as severe, albeit not nearly as noticeable to the outside world.

Chemo Brain

A mild form of cognitive deficits is sometimes called “chemo brain.” These typically mild mental changes can disrupt daily living for a child, and long-term can impede their ability to work and have a successful career. It is especially damaging to children who are still in school and trying to give life their best effort leading to a future of independence. Cognitive brain damage is a real and expected outcome from chemo that is rarely spoken about, mainly because the struggle is unseen to the naked eye. The National Institute of Health (NIH) states that up to 75% of cancer patients have cognitive impairment during treatment. At least 35% of cancer survivors have permanent damage that follows them for years after treatments have ended.

Chemo brain symptoms include:

• Difficulty concentrating and multi-tasking
• Difficulty remembering things that occurred recently
• Difficulty completing tasks and following directions
• Difficulty problem solving
• Slow thinking and mental processing speed
• Inability to think clearly
• Loss of visual-spacial skills
• Disorganization
• Fluctuating alertness and orientation

If these were the only cognitive impairments that result from cancer treatments, maybe the conversation could remain personal to the patient and his/her parent and doctor. But the truth is cognitive impairments from cancer treatments is a much broader conversation that should be addressed with as much attention as the cancer treatment itself. 

Permanent Cognitive Impairments from Cancer Treatments

According to the Livestrong Cancer Research Organization, cancer survivors can suffer permanent cognitive impairments from chemo-brain. However, other cognitive impairments are often experienced from more aggressive treatments such as radiation, immunotherapy, spinal cord chemo, and high-dose steroids.  These cognitive impairments can include a reduced level of consciousness, unusual sleep patterns, agitation, confusion, memory loss, aggressive behavior, hallucinations, poor judgment and decision-making, disorientation, anxiety, delirium, dementia, depression, and inactive behavior.

High-dose steroids, for instance, are often given to cancer patients to circumvent the impact of chemo on the body and help bring down inflammation and manage pain. Steroids can have multiple roles, including being part of the cancer treatment itself. However, high-dose steroid treatments can come at a high cost. They leave lasting physical impairments and also impact the brain, causing severe and volatile mood swings. For parents of a child with cancer, this can leave them wondering where their real child has gone during treatment and sometimes after. Some children might even be aware of their own mental and emotional changes but are powerless to stop them and recover their true selves.

New Struggles for Childhood Cancer Survivors

A child’s life and future can be upended due to cognitive impairments even after cancer treatments are over when they become “survivors.” These mental struggles can be the most ruthless part of cancer and its aftermath for both patient and parents. Brain chemistry can change for life. Living life “normally,” especially for kids, can be a significant challenge. Academics, driving, organizing, school and/or working are all things that are dramatically affected. Particularly frustrating to a child is to see their peers do these things with ease. In addition, mental struggles can bring about a host of psychological issues, including but not limited to depression that will need medical attention, potentially for years.

Learning how to drive, for the average teenager, is a six-month or less process. For a cognitively-impaired child coming off chemo, it can take up to a year or more. Some may never learn how to drive. Working a job requires memorization and cognitive skills most cancer survivors can’t necessarily do at the speed most jobs expect. This leaves many cancer survivors either without the ability to work or bouncing from job to job because of being let go.

Parents Long for a Normal Life for Their Child After Cancer

A child’s cognitive impairments can be exceedingly challenging on caregiving parents who not only guide their child through cancer but back to what they hope will be a normal life. Often there is nothing normal about the life their child will now live. All any parent wants for his or her child is to live a productive and fulfilling life. Nothing hurts parents more than seeing their child left out, disadvantaged, and unable to create a happy and successful life because cognitive impairments have taken hold of their child’s future.

Many medical professionals say that half the cancer battle is mental. The reality is, even if one overcomes cancer, the mental battle is ongoing. Highlighting the struggle and helping those most impacted is a tangible way to advocate for pediatric cancer. Cancer research and hospitals treating cancer are well funded.  But cancer is a three-legged stool: Research, Treatment, and Journey. Focus on the journey cancer patients must take, and the aftermath of that journey is not even in the cancer conversation publically, let alone being funded. And don’t fool yourself into believing that medical insurance will take care of treating these issues. It does not!

Care and Funding For the Cancer “Journey”

Most people care about cancer because they have had some level of experience with it through a friend or family member. Thoughts on how to address cancer are often directed to fund hospitals and cancer research. Hospitals and cancer research foundations have done an excellent job! However, little attention and awareness are given to funding organizations that focus on the journey and the cancer patients themselves.  It is not wrong to fund research and hospitals.  What is wrong is that the journey is not given the same visibility, focus, or funding.

Here to Serve Is About the Journey

Here to Serve’s entire focus is on the Journey. They mobilize teams of people into care communities to take on everyday responsibilities so parents can spend more time with their sick child and other children. Parents need to tackle tasks that become exponentially more difficult with a sick child, like tutoring, medication scheduling, nutrition, treatments, doctor and clinic visits, helping their child manage emotions, and giving them tools to compensate for lost mental acuity. Here to Serve gives families the ability to manage their cancer journey with their child. If you know of the recent cancer diagnosis of a child or parent of young children, let them know they are not on this journey alone. Have them Get Help through Here to Serve!

By Bryan Quintas