Tuesday, December 29, 2015

Tuesday, December 29, 2015 -- Mattie died 328 weeks ago today. 

Tonight's picture was taken in December of 2002. Mattie was 8 months old, and I can still remember sitting Mattie in front of the tree! If I remember it correctly, Peter snapped the photo, but Mattie was looking up at me. This was Peter's joke all the time.... he felt that Mattie always knew where I was and was focused on me.


Quote of the day: I am not alone at all, I thought. I was never alone at all. And that, of course, is the message of Christmas. We are never alone. Not when the night is darkest, the wind coldest, the world seemingly most indifferent. ~ Taylor Caldwell


On September 8th, Brady Dennis, a reporter for The Washington Post interviewed Peter to seek his opinion with regard to using pain medications like Oxycotin for children. The article was entitled, Why the FDA approved Oxycotin for kids as young as 11. Once Peter made the connection with Brady, he then shared with Brady the work we have been funding to develop psychosocial standards of care. Brady suggested that Peter and I meet with him for an interview. Brady did a two hour long interview with us, which was followed by another interview in our home. When we were interviewed at home, there was a Post photographer, Bill O'Leary, who came along. The irony is Bill came to our home in 2010, when the Post did an article on us. Bill remembered our home, but was impressed with how we transformed it post-Mattie's death. When he saw our home in 2010, it looked like a warehouse filled with all of Mattie's hospital items and gifts he accumulated in his year of treatment. 

The Psychosocial Standards of Care were published on December 23, and now six days later, a Washington Post article was published to announce this historic moment! The article is below:
How one couples loss led to a push for psychosocial care for kids with cancer

https://www.washingtonpost.com/national/health-science/how-one-couples-loss-led-to-a-push-for-psychological-care-for-kids-with-cancer/2015/12/29/45f0eb86-977e-11e5-b499-76cbec161973_story.html?hpid=hp_hp-more-top-stories_cancerkids617pm%3Ahomepage%2Fstory

Peter and I flew to Ft. Lauderdale today. At first we weren't sure we were even going to make it out of DC. We were on the plane, sitting on the runway, when all of a sudden the pilot came on the PA system to tell us that we had to go back to the gate because of an indicator light error. We were at the gate for 90 minutes, with crew fixing parts and other issues with the plane. We had very anxious passengers aboard who wanted to get off the plane. However the ticketing agent came aboard to let us know that we could leave the plane, but that another flight to Southern Florida wouldn't happen for at least another 24 hours, given the holiday season traffic. 

We flew in clouds until we got to Florida. This is the site we saw flying over Cape Canaveral. The circular area closest to the water is where the space shuttle used to launch from. 

Flying into Ft Lauderdale! A warm 80+ degrees today. 

Here was our glorious site at dinner.