Tonight's picture was taken in February of 2009. You maybe asking yourself..... what was going on here? This was what a typical physical therapy session with Mattie looked like. Nothing with Mattie was ever ordinary or typical, and this illustrates my point. Mattie's physical therapist, Anna, learned very early on when working with Mattie that she had to think outside the box. She had to be creative to motivate Mattie to want to move his body in therapy. Mattie suffered from great pain and therefore doing therapy wasn't deemed a boring activity by Mattie, but his avoidance of it was due to protecting himself from additional pain. Yet when Mattie had a team of people around him who he liked and cheered him on then he was more eager to participate in the process, and get out of his wheelchair. Pictured behind Mattie were: Jenny (his art therapist), Denise (his social worker), Jessie (his art therapist), and the last person was a physical therapy intern who worked with us only one time.
Quote of the day: It takes longer to recover from cancer than to be treated for it. But we have focused so heavily on treatment that we almost entirely neglected the rest of the patient's life. The rest of a patient's life is like a room with the lights out. We don't even know what's in there. There's been such little investigation and study into that. ~ Geoff Eaton (cancer survivor and executive director of a cancer non-profit in Canada)
An article came out today entitled, Childhood cancer survivors found to be at higher risk of mental illness. Ironically what this Canadian study found was exactly what Mattie Miracle has been saying all along, and that is childhood cancer is NOT JUST ABOUT THE MEDICINE.
Researchers analyzed data from about 4,000 childhood cancer survivors in Ontario as well as 20,000 others in the general population to compare health care use. The findings have implications for mental health supports and parenting those who have survived cancer. According to the article, most children with cancer in Canada now survive (personally I am suspect of this reported FACT). But children are at greater risk of poor mental health outcomes, such as anxiety and substance abuse. Dr. Sumit Gupta, a co-author of the study and a staff oncologist Toronto's Hospital for Sick Children, was actually surprised at the severity of the mental health issues.
I always love hearing when medical doctors are surprised! Especially as it relates to psychosocial issues. As if they can't understand how such issues could possibly arise!!! Worse they haven't even prepared themselves or their patients for their possibility much less explored how to proactively mitigate them. Perhaps physicians work in a vacuum, but unfortunately for patients and families, we are deeply affected by the environment that we are exposed to during cancer treatment.
Here are the top findings from this study:
- Among cancer survivors who were four years and younger when they were diagnosed, 131 had a severe event (from a mental health issue) during the follow-up period of the study.
- By age 28, the cumulative incidence of a severe event such as hospitalization or visit to an emergency department for a mental health reason among this group was more than 16%.
- The most frequent mental health issues included anxiety, substance abuse and mood disorders.
- The researchers also found that childhood cancer survivors had a 34% higher rate of medical visits for a mental health complaint compared to the general population.
- Dr. Gupta and his team looked at some of the treatments children with cancer receive at a young age to see if the drugs triggered a reaction. The type of chemotherapy didn't pan out as an explanation. Instead, it seems like something about the experience of enduring cancer when young increases the risk of long-term mental health problems.
The last bullet point intrigues me because physicians are looking for a medical explanation for these psychological issues. As it is too far fetched for them to grasp that the experience of being diagnosed and undergoing treatment is in and of itself toxic, stressful, and disturbing. These experiences alone can trigger mental health issues and concerns.
I single out physicians, but in all reality I am not sure I would have understood the psychosocial consequences myself if I hadn't experienced them personally. Peter and I got to watch Mattie endure months of chemotherapy and surgeries, while living in-patient. We saw Mattie transformed before our eyes from a humorous, bold, and happy child, to one that had great sadness, fears, and preferred isolation. The transformation isn't only experienced in the child. It also happens with parents.
The study highlighted that parents become hyper vigilant while their child is in treatment. We have to, as our children rely on us for their round the clock care and to be on hand to report complications of treatment. It is very hard to go from living in this heightened state of arousal to returning back to baseline when treatment is over. Parents need support post treatment. Meaning it is hard to go from living in the cancer world, back to the real world, where cancer is not a daily threat.
I have attached a link to the article below, so you can read it for yourself. In either case, I am very happy that the reality of cancer care is being expressed in this study. As Mattie Miracle always says...... the psychosocial issues do not end when the treatment does." Thankfully medical researchers are beginning to highlight this fact.
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