Wednesday, November 30, 2016

Wednesday, November 30, 2016

Tonight's picture was taken on Halloween of 2008. This was Mattie's last Halloween with us. Mattie picked out this mummy costume at the hospital because he felt that it hid the fact that his right arm was operated on and bandaged! Sitting next to Mattie was one of his closest friends from preschool, Zachary. Zachary invited Mattie to his house to trick or treat. However, Mattie moved very slowly and cautiously because he was afraid he would fall and hurt his arm. That night Mattie and Zachary went trick or treating with a group of kids. The other kids were running from door to door and they were encouraging Zachary to do the same and to dump Mattie. Zachary did not do this though. He chose to stay with Mattie, despite the group of kids that dumped Zachary instead. Very telling of what a good friend Zachary was to Mattie. In any case, after they trick or treated they came back in and Mattie was doing one of his favorite things.... NOT eating the candy but sorting it. Mattie wasn't into sweets and candy! This is NOT something he learned from me, it was simply Mattie. 


Quote of the day: I don't know what your destiny will be, but one thing I know: the only ones among you who will be really happy are those who have sought and found how to serve. ~ Albert Schweitzer



What a day today was!!! It started for me by leaving our home at 7:30am and heading to Alexandria, VA. I was invited to a class at Mattie's school, a class who has selected Mattie Miracle for an entreprenurial project. In any case, the class is a 3D modeling class, and they program computers and print models out in 3D. The class has agreed to design a model of an MRI machine for MedStar Georgetown University Hospital. So that child life professionals can use the model to help explain this frightening scanning process to children, before they take a scan. It has been shown that psychoeducation before a scan can reduce the need for sedation. Which can be beneficial since sedation comes with other medical risks. 

To help the class understand the context for the MRI model they are designing, I have created a three part speakers series. Today, I had a mother-daughter pair speak to the class. Bridget is now 24 years old and has been actively fighting Hodgin's Lymphoma for eight years. I met Bridget and her mom, Cathy, at Georgetown University Hospital, as Bridget was diagnosed a couple of months after Mattie. But in essence they were in treatment together. I purposefully selected Bridget and Cathy for the class because I knew they could make childhood cancer come alive for students totally unfamiliar with the disease. In addition, Bridget has an amazing sense of humor, which truly helps others engage with her story. It worked very well. 

Though I noticed the following.... the students developed a list of 20 questions for Bridget and Cathy. I saw the questions before class started and they were excellent. The teacher assured me that the students would be interviewing Bridget and Cathy. However, that isn't what happened. I am not sure if the subject matter was too difficult for them and they therefore felt uneasy, or what. Either case, I ran the interview. Though I am familiar with Bridget's journey, I was so proud of her. She was able to intelligently talk about her disease and the psychosocial impact it has had on her. None of us can truly know how challenging Bridget's life is. Basically she never was able to be a teenager. She was diagnosed at age 15 and has spent all these years in treatment and a hospital (though Hodgkin's Lymphoma has a higher "cure" rate than other cancers, the same isn't true if you relapse with Hodgkin's Lymphoma.... which Bridget has done several times). This isn't how she wanted her life to be, and of course she sees her friends around her going to college and getting jobs. Something she is unable to do. How she gets up each day and faces another day of cancer is truly a remarkable feat. I am not sure her classroom audience understood the depths and horrors of what Bridget and her mom contend with, but I was happy that Bridget shared this reality with us and also talked about her experiences with scans and procedures. I believe this will help students absorb what she was saying and potentially use this information when they create their MRI model. 



While I was in the classroom, this is what poor Peter was dealing with. He rented a Uhaul van and then went to retrieve the remaining candy and loaded it onto the truck for delivery.

That may sound easy, but it TRULY ISN'T! Candy weighs a ton in these bins. In addition, before Peter could load the bins, he had to make sure that all chocolate itemed ziplocs were placed in the appropriate bins, while non-chocolate itemed ziplocs were stored in non-chocolate bins. This is important because some facilities store the candy as we give it to them and mixing chocolate and non-chocolate items in the bins is not a good plan. For many reasons. The candy starts tasting the same, and also chocolate items don't last as long as non-chocolate ones. 

Peter and I drove 162 miles today in total! We covered a lot of territory and made FOUR deliveries. Three of which were in Baltimore, MD. The first delivery was to Children's Hospital at Sinai. In the photo is the child life staff at the Hospital. Mattie Miracle is happy to be launching a Mattie Miracle Snack/Item Cart there in the New Year. Needless to say we made a 2,000 pound candy delivery to Sinai today. 

Our second delivery was to the Hackerman Patz House (Baltimore, MD). This house serves as a home away from home for families caring for a child with a chronic or life threatening illness at Sinai Hospital. 

After our Sinai Hospital visit, half of our van was cleared out! But it was a harrowing delivery day, as it was raining ALL day, and in most locations it was only Peter and I moving these bins and boxes. 

Our third stop in Baltimore was to the Ronald McDonald House. I have been to two other Ronald McDonald Houses in our region, but this one truly stands out to me. Look how excited the staff was!!! They were blown away by the candy and our generosity. They are the ONLY site that has asked the significance of the candy and why I do what I do! So I told all these ladies about Mattie. When Mattie was battling cancer, our care community brought me treats DAILY! Daily for 14 months. I couldn't have made it without that support and I can't tell you how much seeing candy meant to me on a difficult day. So much so, that even today when I am stressed out I have learned to turn to candy! I suppose there could be worse problems. In any case, after Mattie died, I wanted to replicate what our care community did for us, but on a larger scale. So we started the Snack/Item carts and of course the candy drive which serves 4 hospitals, 8 childhood cancer organizations, and 2 homeless shelters. 

Our final stop was in Reston, VA! Not around the corner from Baltimore! We visited the Embry Rucker Community Shelter. I found out about this shelter from a friend of mine, who actually lived at the shelter for a period of time. I like to support this shelter in honor of my friend and I am so happy the shelter accepts candy. Because not all shelters will! 

This photo is misleading, but we left the shelter with a ton of candy! They were deeply appreciative, so much so that a 73 year old homeless man at the shelter came over to talk with me. He wanted me to know what a difference this candy makes in the life of a homeless person. He said it helps morale, it provides energy on cold days, and it also makes them feel special and worthy of such a sweet treat. Though Peter and I were doing candy delivery for over six hours today, it is this conversation with this man that has stayed with me. He has been living on the streets for thirty years and he told me how he sleeps on a bench at night. Yet despite the hardships and struggles he lives with, he has an incredibly upbeat and positive attitude. It just gives you pause.