Saturday, October 18, 2014

Saturday, 18, 2014

Tonight's picture was taken in October of 2006. Mattie was at a fall festival and as you can see in a moon bounce and jumping around. This was another thing that Mattie did not naturally gravitate to. Moon bounces can be intimidating places for some children because they are loud, chaotic, and once inside kids are falling all over each other. These were things Mattie did not care for. But over time we found a way around all of them so Mattie could enjoy the experience! 


Quote of the day: Don't judge each day by the harvest you reap but by the seeds that you plant. ~ Robert Louis Stevenson

Peter and I spent the day working on a presentation for next week's conference in Toronto. Many of the presentations at the conference are SHORT! I have found the shorter a presentation is the HARDER it is to deliver. Mainly because it is very challenging to deliver anything of substance, and I feel our story is of great substance. So the pressure is on. One of the highlights of my day was receiving this lovely lake photo from my friend Mary Ann. She went for a walk, and while on her journey she sent me photos and some video clips. She wanted me to know she was thinking of me. Also that there were scenes along her trip today that Mattie would have also appreciated.... such as a woolly bear caterpillar and a house fully decorated for Halloween. Mattie would have most definitely enjoyed these sightings!

As promised, I uploaded some of the power point slides below that we have been working on for one of our presentations next week. The presentation is to address the Quality of Life for Mattie and us from treatment to now and how it influenced our decision to advocate for a national psychosocial standard of care for childhood cancer. 

Of course it would be important to understand what Quality of Life even means. That isn't so easy to define per se or even measure. But in a nut shell quality of life is a concept made up of several dimensions, including an individual's physical functioning, psychological state, social functioning, and physical discomfort. 

We decided to have a simple slide depicting Mattie as a healthy child. We wanted the audience to know that he was born healthy and lived an active life up until the age of 6. This included going to school, having friends, and doing all the things typically developing children get to do. Which means that we as parents also experienced those things right along side him! Therefore our quality of life (both physically and psychologically) were high. For the purpose of this presentation, I am NOT going to talk about Mattie's previous issues with sensory integration, speech delays, or other issues. We do not have time to address these and in comparison to cancer they pale. However, if someone were to do a complete perspective of our quality of life though, I do feel this would be an important factor to take into account because we had already gone through quite a process with Mattie already even before entering the world of cancer. 

This slide captures Mattie's quality of life. To me the photos say it all! Exhaustion (top left), depression (top middle), pain (top right), sadness (bottom left), and isolation (bottom right). 

This slide captures what life looked like for Peter and I while in the hospital and now. The top left photo was around August 5th, when we learned Mattie's cancer metastasized. A day neither one of us will forget. The staff were entertaining Mattie in the clinic while we talked to his doctor. We had just come back from that discussion and you can see Mattie was staring at us to figure out what was going on. Meanwhile I felt like someone had just run me over with a car. The photo in the middle was taken on October 20, 2008, the day of Mattie's first limb salvaging surgery. It was some ungodly hour of the morning and Peter and I were very scared as we were trying to keep it together to support Mattie. The top right photo was taken on November 12, after Mattie's second limb salvaging surgery. This was a horror show to see and manage. The pain management went very poorly post surgery and Peter and I did a great deal of screaming for days until Mattie was out of agony. The other three photos capture our life without Mattie. The balloon release occurred at Mattie's funeral, the memorial tree is at Mattie's school, and the memorial stone is at Georgetown University Hospital. Needless to say, the point of this slide is to alert our audience that Mattie may have died but our quality of life has NOT returned to normal. The cancer maybe over, but the battle continues. 

This slide highlights the essential nature of psychosocial support!!! When Mattie had access to this support, he was happier. In our case, the majority of this direct support was provided by his child life specialist and art therapists. I have no idea where we would have been without these women. They enhanced our quality of life dramatically and to them we will be forever grateful. Which is why we are committed to supporting the Mattie Miracle Child Life Program Fund at Georgetown University Hospital in Mattie's memory.