Monday, December 5, 2016

Monday, December 5, 2016

Tonight's picture was taken in February of 2009. Mattie was sitting on his hospital bed with Anna, his amazing physical therapist. It was Anna's birthday, so Mattie treated her to one of his cupcakes! 

Why did Mattie have cupcakes in his room? He had them because I would bake them for him between treatments. Cupcakes were a sweet incentive for Mattie to comply during his physical therapy sessions. By the winter of 2009, Mattie was depleted of energy, he was physically disabled (from his limb salvaging surgeries) and unable to walk or perform any activities of daily living independently. In addition, Mattie's high dosage chemotherapy left him with nausea, mouth sores, and a disinterest in eating. So he was losing a lot of weight. I know some families focus on good nutrition during cancer, but I did not espouse to this philosophy. My goal was to give Mattie anything he wanted to eat.... even cupcakes. 

Mattie loved cupcakes (non chocolate ones.... as he HATED chocolate) and would comply to use his walker and move his body for the chance to earn one. Moving was a total challenge for Mattie because he was in terrible pain, but we found distractions and incentives encouraged him at times out of his funk and into physical therapy. So the cupcake is very symbolic to me!


Quote of the day: What can I say? I've never met a cupcake I didn't want to get to know better. ~  Jasinda Wilder

Today was our annual check presentation at MedStar Georgetown University Hospital. In honor of this occasion, I always bake two dozen cupcakes. In memory of Mattie. I no longer have a reason to bake cupcakes, but this check presentation provides that for me. It also gives me the opportunity to share information about Mattie's life, the importance of cupcakes and why I am sharing them with others. 

Believe it or not we have been doing a check presentation event at Georgetown since 2011. Which means we are close to donating around $200,000 to the hospital. This doesn't include the thousands of dollars we provide through gifts in kind EVERY year! In 2011, we established the Mattie Miracle Child Life Program Fund at the Hospital. A fund that we truly believe in because Mattie, Peter, and I would never have made it through the horrors of Mattie's cancer battle without this very necessary psychosocial support. We saw it work for Mattie and wanted other children at the hospital to have access to these services. Last year, we started a new initiative.... adding a child life specialist on the weekends. Prior to our funding, children and families did not have access to a child life specialist on Saturdays and Sundays. I have been told by all medical staff that this addition makes things run smoother and families are happier. 

In the past we always had the check presentation event in the child life playroom in the pediatric units. This is the first year, we moved it! I asked for it to be moved because many of the nurses and other psychosocial professionals I had come to love, have left Georgetown. When staff you know leave a place your child was treated at, it feels like another loss. A loss because with them, they take the institutional knowledge that included Mattie. Now when I walk the hallways I meet many medical professionals but most of them do not know my story or Mattie's. So when our philanthropy contacts suggested meeting before the hospital board, I agreed. In fact, the hospital board said this was the first NON-PROFIT that has ever come to speak to them! Hard to believe! But I feel it is important for them to hear from someone who directly experienced their Hospital and continues to financially support it. There were 20 board members in front of us today, and they all eagerly listened to our story. Some were crying. 

Pictured from left to right:

Tricia Grusholt (Mattie's favorite nurse), Ann Henshaw (Mattie Miracle board member), Michael Donnelly (chief of pediatrics), Vicki, Jessica (Child Life Specialist), Peter, Michael Sachtleben (Hospital president), Katie (Child Life Specialist), and Jess (Child Life Specialist)

Mattie Miracle donated $30,000 today to MedStar Georgetown University Hospital's Child Life Program. We had the opportunity to talk to the executive management team of the Hospital and to meet Michael Sachtleben (Hospital President) and Dr. Michael Donnelly (Chief of Pediatrics). We shared Mattie's story, the Foundation's mission, and our commitment to psychosocially support children with cancer and their families.

This donation goes to fund a weekend child life specialist at the Hospital. Prior to the Foundation establishing this position, children and families did not have access to child life on the weekends. Child life is a necessary and vital part of comprehensive cancer care and we are thrilled to be able to provide this much needed coverage to thousands of children and families a year.