Tonight's picture was taken in February of 2008. If you look closely, Mattie was holding a big stick in his right hand. We visited Roosevelt Island that day and in typical Mattie fashion, he always picked up a piece of nature along the way and then brought it home. I can't tell you how many branches, leaves, and acorns we had piled up in our commons area. Now, every time we pass these big rocks on Roosevelt Island we think of Mattie.
Quote of the day: The Ultimate Measure Of A Man Is Not Where He Stands In Moments Of Comfort And Convenience, But Where He Stands At Times Of Challenge And Controversy. ~ Martin Luther King, Jr.
We came across this article today entitled, Health‐related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: a systematic review. These types of articles always catch our attention because they focus on sarcoma, of which Mattie had a type of sarcoma... osteosarcoma.
Based on our cancer experience with Mattie, we felt the treatment for osteosarcoma borders on barbaric. Any time bones need to be removed from one's body as part of the treatment process, a red flag should go off! Maybe saying.... WARNING, this will have psychosocial consequences!
Such a warning bell shouldn't be coming from the parents and family. As we are too traumatized dealing with the diagnosis of childhood cancer. But what about the medical professionals..... shouldn't it dawn on them for example, that if Mattie had to have two arm bones and one leg bone removed that this was going to be problematic for him psychologically and socially? In our case, NO ONE flagged this as a problem and even when Mattie was exhibiting full blown medical traumatic stress symptoms, again no one recognized it. Other than us!!! It was Peter and I who demanded psychiatric assistance to help Mattie, but what if we did not have the energy to advocate, or even knew that we had the right to do so with our medical providers? All I know is without help, I am quite sure Mattie would never have been able to continue in treatment. As it had gotten so bad at one point, that NONE of his medical providers could approach Mattie and forget about touching him.
Though Mattie did not survive, I always felt there would have been real psychological challenges we all would have had to face if he lived. Mainly because Mattie had enormous scars from surgery all over his body and his range of motion with his arms was very limited. So limited that he couldn't get dressed without assistance. In addition, Mattie was unable to walk and it would have taken intense physical therapy to relearn the walking process. Therefore, I hypothesized that osteosarcoma survivors are faced with very unique challenges and stresses that would make them feel and look different. Or in essence depressed and isolated. I have voiced my theory to other researchers, who have told me.... no, these children aren't very different from other childhood cancer survivors.
So moving forward, reading the following conclusion from this study verifies my thinking...................
Compared to healthy individuals, patients with sarcoma frequently scored lower in physical and psychological quality of life domains and experienced higher rates of self‐image issues, depression, and suicide.
Now this makes intuitive sense to me, but what is being done about it? With regards to the medical treatment, I would say NOTHING. It hasn't changed much for children like Mattie, as they are still being given drugs from the 1950s and 1960s, and limb surgeries are still being done. Truly there is no humane way to treat osteosarcoma, which is why from our perspective what we can have control over and alter is the psychosocial care provided to children in treatment, survivors, and families.
Health‐related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: a systematic review.
https://onlinelibrary.wiley.com/doi/abs/10.1002/pon.5007
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