I invited Tiffany Moody, mom and mom-cologist, to her now 8th grader to share her thoughts on their lived experience thus far as they have transitioned over to the survivorship clinic at their treating institution.
I give you Tiffany’s thoughts, feelings, concerns in her own words.
“Following 8 grueling months of high-dose chemotherapy, the amputation of a portion of her right leg, our 10 year old daughter finished her treatment protocol for Osteosarcoma. It was an emotionally exhausting and physically brutal experience. We were, and continue to be, overwhelmingly grateful that she made it through because many of the children we 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 was missing half a leg was sent home with the parting words, “See you for scans in 3 months”.
Done or so we thought.
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, but because of the cure itself.
We are blessed and grateful that our daughter has shown no evidence of disease for almost 3 years now, but we also understand that completing the treatment portion of our journey was not the end, but rather a beginning of the lifelong battle faced by survivors which includes fear of recurrence and the possibility that long term side effects may reduce the quality and/or duration of her life.
When she was 2 years off of treatment, we had our first contact with the survivorship clinic. To outsiders, this sounds encouraging and hopeful, a proud graduation of sorts. In reality, survivorship clinic exists because childhood cancer treatment is so detrimental to a body that a survivor must spend the rest of their life monitoring for 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 obliteration everything. While the battle plan is sometimes successful in killing the rogue cells, it also destroys a myriad of other good things and can cause significant collateral damage.
This damage is magnified in young, still growing bodies.
Survivorship clinic is the point at which a patient looks marginally less over their shoulder for the cancer to return and becomes more aware of the potential for problems caused by the high dose chemotherapy, radiation, and surgical interventions 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, heart failure, endocrine issues, kidney failure, cognitive challenges, loss of limbs, infertility, and secondary cancers. What is even less understood by those outside the cancer community is that this list is not a list of rarities that only happen in worst case scenarios. No, this list is a life-altering buffet from which each child will get a plateful. All children who survive childhood cancer will likely have multiple health challenges for the remainder of their lives. Our daughter is no exception.
I am not sure what I expected at our first official survivorship appointment, but something in me felt as though the experience should have a different ambience than the oncology clinic where we did the bulk of her treatment. 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 enough, 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, survivorship clinic seemed very much like an oncology appointment rather than a wellness visit, and our general feeling as we walked away was simply, ‘Ugh’.”
Tiffany goes on in her post to ask the question what could be done differently in the provision of survivorship care as well as to offer a few things she believes would bring about change for the better for her daughter who is 1 of many, many survivors to ensure that they don’t merely survive, but THRIVE.
I invite you back to read Tiffany’s second post on Monday, 10/5 and Tiffany, thank you so very much for your candor, your transparency, your heart for those facing childhood cancer and life after the cure.