Thursday, March 3, 2016

Thursday, March 3, 2016

Tonight, I decided to post a video of Mattie. I captured this video in December of 2007. Mattie was headed that day to Lessons and Carols, a holiday event at his school. For this occasion he had to dress up in a jacket and tie. Which was an experience in and of itself. Since Mattie typically did not like anything tight around his neck. But he looked adorable in his snowflake tie! The song Mattie was singing in front of our Christmas Tree, was the song his class was performing that day in front of the school. I worked with Mattie over time, so he memorized all the lyrics. I think I still know them today! 


Quote of the day: The worst part of holding the memories is not the pain. It's the loneliness of it. Memories need to be shared. ~ Lois Lowry


There was a lot going on today. At 4pm, Peter and I were interviewed by Janet Detmeter (http://toginet.com/shows/childhoodcancertalkradio) for an hour. Janet hosts a talk radio show in California and wanted to highlight the Foundation and our psychosocial mission. Janet lost her son to DIPG (a form of brain cancer, which is an automatic death sentence, since there are no effective treatments for this disease). Janet started her own foundation and the foundation runs a childhood cancer talk radio show. When the podcast goes live, we will post it. But it was a good interview, despite Peter and I being in two different locations while taping it!

Peter was contacted today by Cox cable. They want to interview him tomorrow about his position on pain medications for children with life threatening illnesses. This is a controversial topic that is being debated within the FDA, because there are two camps on this. Those who do not want to give children access to potentially addictive pain meds, and the other camp, which is dealing with life threatening illnesses that really require such medications. Peter and I opt for access to these drugs for children. Of course we understand the complexity of the issue but also witnessed excruciating pain in Mattie and we learned first hand the importance to having access to these medications. Pain medications aren't distributed or administered in a haphazard or unethical manner. Instead, we relied on consultation with doctors, Mattie's overall care team, reports from Mattie, and our own instincts. When a child is in severe pain and/or dying, withholding such drugs can be devastating and have lasting consequences on the families left behind. 

The broadcaster asked us for photos of Mattie, NO PROBLEM, and video clips.... well that is MORE of a problem. Mainly because in Mattie's day and age, we used the old fashioned video recorder. Accessing those videos and transmitting them is MUCH harder. Yet as Mattie got older, I started using my digital camera to record videos. So the videos below are the ones I sent along today! I tend NOT to look at videos for the most part. I am not sure why. Perhaps they make the reality even more REAL. But they do give you a better perspective of Mattie.............

Mattie received this wonderful musical birthday card while in the hospital. This was taken in April 2009, Mattie's 7th and last birthday with us. 

In September of 2008, a month into treatment, several of Mattie's school friends came to visit him in the hospital. This was before Mattie lost his hair and his ability to walk. So friends were less threatened to visit him. Linda, Mattie's child life specialist, set up a place in the hallway for kids to blow bubbles together. DOING an activity helped to normalize a very abnormal environment for the children. 

I took this video in September of 2008. This was an impromptu piano playing session. Mattie just went over the piano and started to play, and create his own piece. You will notice while playing the piano the phone rang, and Mattie encouraged me to answer it.

This was what a typical physical therapy session looked like with Mattie. His therapist, Anna, knew that she had to think outside the box when it came to getting Mattie motivated to move. Mainly because Mattie wasn't feeling well and was in pain. But Mattie really pushed Anna, and Anna always rose to the occasion. This was one of Mattie's physical therapy conga lines in February of 2009. 

Last but not least.... this was a video of Mattie and his adventures with Speedy Red. My parents bought Mattie Speedy Red, because this was in essence his last wish. Mattie always wanted a ride on vehicle when he was well. I never allowed Mattie to have such a car because I felt it was too expensive and believed he would quickly get tired of playing with it.  Yet when Mattie was dying, your thought process and priorities as a parent get transformed. Speedy Red brought Mattie many days of joy. Despite having to ride it with oxygen and a pain pump. Mattie took to driving like a duck to water. I rode in the car initially with him to make sure he knew how to use the brake and gas pedal, but he caught on fast!