Today’s post is a continuation of Tiffany Moody’s thoughts from 9/29 with regard to her daughter’s life after cancer treatment, specifically the transition to survivorship care.
“In these years since our daughter finished treatment, I have given much thought to how we can provide a more seamless transition to post-cancer care.
Is there a better way than this relatively useless plan of doing only scans and blood work for a few years, until you ultimately progress to a once a year oncology pilgrimage where they do essentially nothing, wait until a problem develops, and then try to determine how to treat it?
The options for improvement are endless, and I am not a medical professional. Based on our personal experiences, it seems there are three obvious changes that would make a significant difference in the after cancer lives of these kids.
First, immediately following treatment the child should be connected with a post-treatment team of integrative doctors. The focus of this group would be to help the child’s body recover from the effects of the chemotherapy, radiation and other tragedies of treatment. This would include good nutrition, supplements, detoxification and any other east meets west medical practices proven to aid in the body’s healing and recovery process.
Second, there should be an extensive focus on counseling and psychological care. Most cancer parents and many cancer children as well as their siblings are left with some level of post-traumatic stress, and in many cases, it is so severe that it makes it difficult to function in everyday life. They have been through a war of a different kind, and many need help being made whole again emotionally.
Third, children’s survivor clinics should look more like wellness centers. It should be a non-clinical environment comprised of compassionate care and relationships. The medical team employed there needs to fully realize two things: 1) treatment should be proactive and anticipatory and 2) even as “survivors,” cancer kids will be facing new losses and grief repeatedly over the course of their lives. Whether they will need drugs to start puberty, are told they can never have children, require hearing aids, are unable to return to an activity they loved prior to cancer, are having learning difficulties, or cannot keep up with their friends on the playground due to physical challenges, the medical team treating these children must understand that each loss related to cancer is a new one and must be validated and mourned properly before the child will be able to move forward.
The care must fully encompass mind, body and spirit.
When we were forced into this world almost four years ago, our goal was simple: Live. What we did not realize was that the transition to survivor would be laden with so many questions, much watching and waiting, anxiety, endless appointments, significant challenges, many losses, and much grief and wrestling in an effort to find peace and a new normal. It has been three years since her treatment ended, yet we still live with some result of this beast almost every day.
The physical list is long and includes scans every three months, survivor clinic once a year, echocardiograms to monitor for heart damage, auditory tests to monitor for hearing loss, physical therapy, and endless appointments with her prosthetist. But emotionally, there are other struggles. Because our daughter is an amputee, there are a number of daily life challenges, and it is something she will deal with forever. She has said good-bye to friends who did not survive, and she has experienced sorrow that prevents her from being a normal child ever again. She has grown up far too quickly.
All of these kids suffer greatly both during their illness and after. We long for better treatments and for a day when being a survivor means just that. A day when a survivor can go months or even years without giving cancer a moment of thought. Until then, we hope for providers who will come alongside with a wellness approach. Doctors who will help childhood cancer survivors anticipate issues and pursue health.
These kids deserve a cure that does not leave them with additional pain, fear and a lifetime of health problems. Until that day arrives, they deserve long-term care that will allow them to not only survive, but to thrive.”
Well said, Tiffany, well said.