Tonight's picture was taken in October of 2008. I know exactly what was happening here. Mattie was in the outpatient clinic recovering from sedation. Sedation he received in order to undergo an hour long MRI. How they expect a child Mattie's age to endure an MRI without sedation was beyond me. Though sedation made a huge difference in Mattie's life, Mattie did not wake up well from sedation. He would wake up screaming and agitated. Which was why our sedation nurse angel, Debbi, learned that she had to pump an anxiety med through his IV as he was waking up in order to transition Mattie slowly. This photo was taken after receiving Versed (the anxiety med). Mattie started coloring in the book Linda, his child life specialist, brought for him. Though I got used to seeing Mattie very pale and with no hair, something about this sight will never be normal or natural to me.
Quote of the day: I think we all have empathy. We may not have enough courage to display it. ~ Maya Angelou
The other day, a cancer advocate tagged me on Facebook. Those who know me well, know I do not spend a lot of time on Facebook. It is just not a platform that resonates with me, plus I think the only things that really get attention on Facebook are happy or outlandish things. Therefore, if you want me to read something and comment.... you need to tag me.
So I went onto Facebook to read the post. In a nutshell, I was introduced to a mom whose daughter is now a cancer survivor. Sounds great right? Well in theory this is what we all hope for, but survivorship is no picnic for children. Cancer treatment leaves long term, chronic, and in some cases life threatening consequences. But these consequences are not well publicized and most certainly aren't on the radar scope of the average person unaffected by cancer. To an outsider, a survivor is CURED and will be able to live a normal life. Both wrong! I remember early on one of Mattie' oncologists told me to remove the word 'cure/cured' from my lexicon. She said once you have childhood cancer, it is a part of your life and the best you can hope for is having no evidence of disease for a period of time. That's sobering no?
Back to the mom on Facebook. She is happy her daughter is a survivor but what she wasn't prepared for are the psychosocial consequences on her daughter and therefore her family. This mom is besides herself and ready to pull her hair out. Why? Because this mom reports that the cancer treatment altered her daughter's personality and behavior. She described how her daughter has constant/daily tantrums that are so severe her daughter lands up physically hurting herself. She mentioned when she told the doctors about this, the doctors suggested the daughter get connected with a behavioral therapist in the community to help her manage these concerns.
There is so much wrong with this suggestion, I don't no where to begin. First off, medical doctors refuse to see that these drugs have psychological consequences on our children. Like this mom, we experienced these emotional tantrums and outbursts from Mattie. So much so that the hospital psychiatrist referred us to an outside therapist to manage them. Which was even more comical, because we were NEVER living outside of the hospital. I was livid that this psychiatrist in essence abandoned us, left me to figure out these tirades on my own, and worse felt that the behavior was a reaction to his environment and not the treatment. He wouldn't even accept the notion that the medications may have triggered such outbursts. In Mattie's case, I reported this psychiatrist to the chief of pediatrics and shared with her my perspective on just how wrong his referral was, because for the most part community practitioners are not trained and skilled to work with childhood cancer issues.
In any case, I understood all too well what this mom faces each day and my heart went out to her. I tried to normalize what she was saying, letting her know that she wasn't alone and that we had the same problem. There were many psychosocial concerns that popped up during Mattie's 14 month treatment process and all of them together inspired us to create the Mattie Miracle Cancer Foundation. A Foundation totally devoted to psychosocial awareness and support. As I told this mom, one of our tag lines is..... the psychosocial issues don't end when the treatment does. This mom, who I don't know, wrote back to me immediately, letting me know she felt understood and heard. Also wanted to know more about Mattie Miracle.
Now how difficult was that to do for this mom? Why couldn't her medical support team listen and empathize? It is a rhetorical question of course, but it would be nice for medical doctors to acknowledge that the medicine alters our children. It changes them psychologically and it is unacceptable that this isn't publicized and even considered when parent's present these issues.
1 comment:
Hi Vicki,
Having worked with kids in treatment for just about 20 years & having spent many years as Director for a Childhood Cancer Foundation, Infind it frustrating that the majority of Drs. Can't & won't recognize the psychological impact the treatments for Cancer creates for their patients. I have known many children & there was not one who did not experience psychological trauma. Yet, the majority of these Childrens Care Teams blame manipulating behaviors, parents spoiling their kids, having no boundaries, etc. as the reason. Instead of admitting this is an area of care that needs attention, they pass the buck. This leaves the parent with no one to discuss this with or someone who could give them help,suggestions. Reality is important areas of care are dismissed if one doesn't have an answer. It is why MATTIIE MIRACLE means so much to me personally. I saw the need, recognized it was as important as all the treatments but knew it was a way bigger problem, than I could help or fix. I am glad you made this Mom know she was heard
Post a Comment