Tonight's picture was taken in March of 2009. Mattie was in the Child Life Playroom at the Hospital with Peter. He was hooked up to a Wii, and doing yoga of all things. Katie, his nurse, was also in on the action. In a way there was a mini contest going on to see who could do the better yoga pose...... Mattie, Katie, or Peter! Here was the irony in all of this.... Mattie, with all his operated limbs was able to do a great job. He was precise and delicate! Katie snapped this photo of Mattie and sent it to me because I wasn't in the room to observe Mattie in action! Everyone knew I was obsessed with photos, and thankfully I was!
Quote of the day: Funerals, I had decided, are for the living. ~ John Green
I had a busy working day. This is the first day where I have been able to somewhat concentrate, focus, and work. For the past several weeks, given how I was feeling, I was wondering if that would ever be possible again. Frankly I never thought about going back on headache medication again until I went out to dinner last weekend with Mattie's sedation nurse and our friend Debbi. Debbi's motto, while Mattie was undergoing treatment was.... "better living through chemistry." Typically I avoid medications, but when Debbi reminded me of this, I decided to talk this over with my doctor this week. I am really hoping that this new medication, which is designed for epilepsy, gives me some relief.
I started my day being interviewed for an hour by an undergraduate student at the University of North Carolina at Chapel Hill. She is enrolled in a seminar which is looking at the role of patients and families in medicine. A rather fascinating course if you ask me. But what is even more intriguing is this young lady was asked to write a paper about a disease of her choosing. She was asked to explore its causes, treatment, and the role of family in its care. To my surprise, she selected osteosarcoma. I asked her today why she chose osteo, and her response was she read about it in John Green's book, The fault is in our stars. One of the main characters in this book had osteosarcoma. Fortunately I had the opportunity to read (at least half way through) this book thanks to my 16 year old friend, Isabel, who lent it to me.
The college student had already perused the Foundation webpage and the blog and we had chatted back and forth by email previously. She came prepared with about 10 questions for our call. The questions themselves were diverse, in that they ranged from..... did Mattie experience any side effects like hearing loss or heart issues from chemotherapy, to what role did art therapy play in his treatment? Naturally while talking about art therapy, which was KEY, I also had to mention child life! Since I write daily for five years and talk often at conferences about Mattie, I am used to answering just about every question possible. However, one of the questions posed to me today had to do with the blog. The question was did I ever have second thoughts about publishing candid material on the blog? In essence did I regret sharing private information about Mattie and myself?
My answer to her today was NO. It was no for many reasons. First we needed a forum to share Mattie's story with his schools, friends, and family. We did not have the where with all to share the story multiple times in one day. Especially since it changed minute by minute! In addition, I think it is much harder for the story to be kept private when it is a child battling cancer. Mainly because it is so unnatural and people want information and want to help. In addition, I was very cognizant of the fact that Mattie was socially isolated and therefore, keeping people posted about his daily struggle was crucial to muster support. I admit that my blog is different than the average caring bridge page, mainly because I share very personal information and am quite up front about my feelings and thoughts. But I think that is what helped capture people's imagination and attention, and perhaps still does even until today. Writing the blog is a labor of love and it takes some level of courage to share and be candid. But our story is our story and if it helps someone else, then it is worth writing. It is most definitely worth capturing in my opinion, because it chronicles Mattie's journey as well as our own.
Another question she asked me today was whether Mattie acknowledged being different or transformed by cancer. The answer to that is most definitely YES! But Mattie was six. He couldn't logically verbalize and chat about the subject like an adult. But yet it came out in subtle ways. Such as when he said he was ugly and no one wanted to be his friend. Or when he said he couldn't do things like his friends anymore (like run, play, go to school), but the tell tale sign that Mattie recognized he was different was that he socially isolated himself. Mattie internalized his trauma and became depressed and anxious and as such did not want to see friends and even family. He did not want to hear the phone ring, he did not want to hear Peter and I talk to each other, and basically he wanted to be safely protected and alone within his two by four of a PICU room some days. If I heard someone tell me this kind of information over the phone, I think I would have had some sort of verbal reaction..... the student provided me with none. There could be two explanations for this. One she was overwhelmed by the content she heard or two she just couldn't appreciate how devastating it was to see a six year old shut down on life. Either case, when I do not get a reaction, I stop talking. I stop because I can not invest my emotions into explaining and reliving such horrors.
Toward the end of our conversation today, we talked about art therapy and child life. All I know is that Mattie and I couldn't have made it without these psychosocial services. Cancer treatment is much more than just the medicine, because in all reality, it is the day to day living that seems insurmountable. What happens when Mattie barricaded himself inside his hospital room and didn't want to see or hear anyone? This had ramifications on him but also on me. For 14 months, I lived on about two or three hours of sleep a NIGHT!!! I am not exaggerating. It wasn't the doctors who were helping me by day, it was the amazing women who checked on me, gave me periodic breaks, engaged Mattie physically and emotionally, and brought me glimmers of hope into what seemed like hell on earth. It is no wonder why Mattie's team of amazing women will never be forgotten by me!
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