Tonight's picture was taken in December of 2004. This maybe one of my favorite photos we took of Mattie during the holidays. Mattie was in his footed pajamas, which he just loved, and he and Patches were hanging around some of the presents that came to us in the mail from Peter's family. Patches naturally gravitated to boxes, after all she was a cat, but her human counterpart was Mattie. Mattie was intrigued by all card board boxes and literally they inspired him to build and create. I love this photo because it captured two very important members of our family who we dearly loved and who are now both gone from our lives.
Quote of the day: You cannot solve a problem in the same frequency in which it was created. ~ Lynn Grabhorn
Peter and I had a long but very productive working session today with two of our key psychosocial standard team members. One of these members now officially works for the Foundation part time. We are thrilled to have Mary Jo on board, who brings not only her expertise and skills to us, but her compassion for children and their families with cancer. Peter and I met with Mary Jo and Lori for about seven hours today. We worked solidly and truly were able to sift through a great deal of material that was sent to us by all four working groups. Keep in mind that these group were only established in February during our psychosocial think tank held in Huntington Beach, CA (10 months later). Here is the remarkable part about all of this. The working groups are comprised of close to 40 people in total, and none of them are getting compensated for the work they are doing. The Foundation pays for their travel and some of their expenditures when we meet at conferences, but the rest of the time, they are driven by their own motivation and passion to make a difference. A rather extraordinary commentary in today's day and age.
The goal of this weekend is to establish some sort of draft psychosocial standards document, a document which we really generated today after compiling and sifting through all the materials we received so far. Upon completion of our meetings this weekend, we will then send this draft document back to the working groups for them to continue to provide evidence in support of what is being proposed.
Currently there is no standard of psychological care for children with cancer in our Country. This is problematic because psychological and supportive care services varies GREATLY between treatment hospitals. Yet it is well documented that such services play a vital role in the overall process and effectiveness of health care. Therefore our ultimate goal is to provide a set of minimum standards that all treatment facilities should offer their pediatric patients and families. It is a challenging task because what we are recommending can't be pulled out of a hat, it has to be based on research evidence or expertise and consensus among psycho-oncologists. We could have tried to accomplish this task over the phone or by computer but it honestly wouldn't have worked out as well. We really needed to be face to face, working off the same documents and drafting a single document projected on a screen in front of us.
We are taking a break for today and will resume tomorrow. This evening Peter and I are joining our friends in cancer at an event at the US Botanical Gardens. As many of my readers know, I became connected to Ilona, a mom who lost her son to cancer, in June. Ilona and her husband established a special scholarship fund at the Botanical Gardens this year in their son's memory. As a gift from the Gardens, they have been invited to a private event in which we will have the opportunity to see the Gardens decorated for the holidays before it is opened to the public. The Botanical Gardens does a beautiful job of decorating, with holiday trains, plants, and special Washington, DC structures comprised of plant materials. I hope to share some photos with you tomorrow from this special event. Peter and I remember taking Mattie to the Botanical Gardens during the Christmas season. It was something he absolutely loved and naturally for me being in a warm and humid environment during December is a rare treat! Ilona's son loved this holiday display too, something we both have in common. It is Ilona's hope that this venue gives us a chance to enjoy the holiday season on some level, since we both realize the challenge of this task. A task that doesn't get easier with time.
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