Survive? Thrive.

My friend, Stephanie Zimmerman, runs an organization called "myHeart, yourHands." She is a Ewing's sarcoma survivor, nurse and also, because of heart failure due to her cancer treatment years ago, a heart transplant recipient. The purpose of MHYH is to bring attention and support to the issue of the long-term, late effects of childhood cancer treatment. For more information, the website link is below:

A few weeks ago, Stephanie asked me to write a post for the MHYH blog. The entry was divided into two parts, but I've posted it here in its entirety:

Eight grueling months of high-dose chemotherapy. Amputation of a portion of her right leg. It was emotionally exhausting and physically brutal, but our ten-year old daughter, Bailey, had finished her treatment protocol for osteosarcoma. We were overwhelmingly grateful that she made it through, because many of the children we had met along the way did not survive. But we left the hospital that last day with very little fanfare and even less information. It felt anti-climatic, incomplete and lacking any sort of formal closure.  They had been dumping toxic sludge into her body for months, yet there was no next step. There was no doctor ready to help us put her back together. Our bald, painfully thin, ghostly pale child who also happened to now be missing half a leg was sent home with the parting words, “See you for scans in three months.” Done. Or so we thought. What we did not realize was that the unsettling feeling with which we left was only a hint of the new normal to come. A life after childhood cancer is a life filled with the fear of relapse and the possibility that the long-term side effects of her treatment would dramatically reduce the quality or duration of her life. As we celebrated the hope that the osteosarcoma was truly gone, we also began to see that there was much of the journey left to travel and that some of it would still be incredibly difficult, not because of the cancer itself, but because of her cure.

We are blessed and grateful that Bailey has shown no evidence of disease for almost three years now, but we also understand that completing the treatment portion of our journey was not the end, but rather the beginning of the lifelong battle faced by survivors. When Bailey was two years off of treatment, we had our first contact with the survivor clinic. To outsiders, this sounds encouraging and hopeful, a proud graduation of sorts. In reality, survivor clinic exists because childhood cancer treatment is so detrimental to a body, that a survivor must spend the rest of their life monitoring and managing the health issues created by the long-term side effects of their cancer protocol. Since the drugs used for childhood cancer are decades old, they destroy the cancer by obliterating everything. While that battle plan is sometimes successful in killing the rogue cells, it also destroys a myriad of other good things and causes significant collateral damage. This damage is magnified in young, still-growing bodies. Survivor clinic is the point at which a patient looks marginally less over their shoulder for the cancer to return and more forward-facing to the possible problems caused by the high-dose chemotherapy, radiation, medications and surgical intervention that were part of the initial treatment plan. The long-term side effect list is terrifying and includes, but is certainly not limited to, hearing loss, cardiac failure, endocrine issues, kidney failure, cognitive challenges, loss of limbs, infertility and secondary cancers. What is less well understood outside of the cancer community is that this list is not composed of rarities that happen in worst case scenarios, but is rather a life-altering buffet of which each child will get a plateful. All children who survive a battle with childhood cancer will likely have multiple health challenges for the remainder of their lives. Bailey is no exception.

I am not sure what I expected at our first official appointment in the world of survivorship, but something in me felt as though the experience should have a different ambiance than the oncology clinic where we did the bulk of Bailey’s treatment. But in reality, the mood was still quite clinical, bordering on depressing. We were faced with new nurses and doctors with whom we had no relationship and who knew very little about the specifics of our child. These doctors rattled off potential issues and asked a multitude of questions in a tone that came across as slightly condescending. It was quite cold and distant. Interestingly though, none of the information they provided was either new or particularly helpful. By the end of a cancer fight, any true “mom-cologist” already knows exactly what the risks are to her child and what to be watching for in the future. Sadly, survivor clinic seemed very much like an oncology appointment rather than a wellness visit and our general feeling walking away was simply, “Ugh.”

In these years since Bailey finished treatment,  I have given much thought to how we can more seamlessly 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, but 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. Secondly, there should be an extensive focus on counseling and psychological care. Most cancer parents and many cancer children and 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. Lastly, 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. One, that treatment should be proactive and anticipatory. And two, that 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 for Bailey 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 and 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 Bailey 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.

1 comment:

Carol Jennings said...

Hope she s doing fine. Soft tissue sarcoma can occur in the muscles, fat, blood vessels, tendons, fibrous tissues and synovial tissues (tissues around joints). About 40 percent occur in the legs usually at or above the knee. Fifteen percent develop in the hands and arms, another 15 percent in the head and neck and 30 percent in the shoulders, chest, abdomen, or hips. Soft tissue sarcomas can invade surrounding tissue and can metastasize (spread) to other organs of the body. forming a secondary tumor. Secondary tumors are referred to as metastatic soft tissue sarcoma because they are part of the original cancer and are not a new disease. Some tumors of the soft tissue are benign (non-cancerous) and are rarely life threatening. Keep going to doctor. Take care.