Tonight's picture was taken in October of 2004. Mattie was two and a half years old and he was at a Fall Festival with us. We absolutely loved getting outside on the weekends and these festivals truly got Mattie running around, exploring, and celebrating the fun of fall.
Quote of the day: What an awful thing then, being there in our house together with our daughter gone, trying to be equal to so many sudden orders of sorrow, any one of which alone would have wrenched us from our fragile orbits around each other. ~ Paul Harding
Honestly I am not sure why putting together slides, prepping and talking was so so difficult. I chalk it up to be physically and mentally exhausted. I was so overwhelmed that this morning, I wrote out talking points for each slide. As I feared I would draw a blank and given there was a time constraint to present in twenty minutes, I had to be succinct. All I know is it took whatever inner resources I had to do this, as I find it takes a lot out of me to appear normal and professional. My usual state right now is scattered, strung out, and constantly multi-tasking.
The title of today's overall webinar was "Caregiver and Clinician Conversations about Increasing Physical Activity in Pediatric Cancer Patients." The session was recorded and hopefully I can share it soon. This photo shows you my portion of the presentation.
After the webinar was over, my dad came back from his memory care center and I had to get both of my parents in the car and over to CVS for their COVID booster. Shuttling them from one place to another is getting much harder, as each of them requires attention and support. After the vaccine was over, my mom wanted to go to the bank and then I took them out of an early dinner. It is now 9pm, and I feel like I ran a marathon today.
Typically I present on psychosocial needs and care, so physical activity was a bit out of my comfort zone. Until I of course reflected on Mattie's journey. Mattie always shows me the way forward. In the presentation I made the link and connection between physical activity and positive mental health benefits for children with cancer.
I put together 25 slides for today's presentation, here are six of the ones I developed for this presentation to help illustrate the importance of physical activity and how this activity changes along a child's journey with cancer.
Physical activity and mental health are intertwined. When preparing for this talk, I turned to my lived experiences with Mattie to help guide my thinking.
When you look at this slide, what do you see?
• At baseline, Mattie was active in every sense of the word (running, jumping biking, riding a horse), he was the definition of a healthy and a typically developing child
• The assumption was this was going to continue, this would be Mattie’s life. He would have a long healthy and productive future
• We never expected a cancer diagnosis, and of course that changed everything.
This slide shows the dramatic transformation. Mattie went from being active to being wheelchair bound, never walking independently again. Mattie also could barely stand and had a limited range of motion with his arms.
• Imagine how frustrating this had to be for a once active six-year-old.
• Yet no one prepared us for what was happening. Sure, there were medical protocols that provided a standard treatment path, but there wasn’t a roadmap for the psychosocial impact and the impact on Mattie’s physical abilities.
• We really did not know what Mattie’s rehabilitation plan was, whether he would be able to walk again, toilet himself again, or dress himself.
• There needed to be a plan, guidance during this tumultuous transformation to help re-engage Mattie’s mind, body, and spirit.
The primary job of a child is to play. Play is very physical. Pre-cancer Mattie played a certain way. But children and families need help understanding that play and physical activities may look different after a cancer diagnosis.
• Movement and physical abilities are affected but they still exist, and the child, family, and the healthcare team need to evolve and creatively find new ways forward.
• Therefore, this is the perfect time to instill hope. This is done by expanding, modifying the traditional definition of physical activity in order to accommodate the changing needs and abilities of the child.
The next three slides show how we modified Mattie’s physicality.
• We tailored activities to meet Mattie’s abilities.
• These creative activities helped Mattie gain control, increase his self-efficacy and self-esteem
• They challenged him cognitively and also provided him a social outlet.
Legos are not just a toy. In fact, through building with Lego bricks, he was actually building his social, emotional, and physical strength.
• Cancer caused Mattie to turn inwards. Yet his Lego models helped him come out of his shell, interact with the world around him, and move his body at the same time.
Even Magic, and learning magic tricks provided physical activity and mental challenges. Challenges which produced positive changes in Mattie’s mood and anxiety levels.
• Not everyone can master the skills of hand and eye coordination needed to perform magic tricks.
• Having developed these abilities empowered Mattie, and enabled him to see himself in a whole new light. Not as a child with cancer, but a child with special skills.
After the webinar was over, my dad came back from his memory care center and I had to get both of my parents in the car and over to CVS for their COVID booster. Shuttling them from one place to another is getting much harder, as each of them requires attention and support. After the vaccine was over, my mom wanted to go to the bank and then I took them out of an early dinner. It is now 9pm, and I feel like I ran a marathon today.
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