Mattie Miracle 9th Annual Walk & Family Festival -- Raised over $97,000

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

July 10, 2012

Tuesday, July 10, 2012

Tuesday, July 10, 2012 -- Mattie died 148 weeks ago today.

Tonight's picture was taken in July of 2009. By that point Mattie was finished with chemotherapy and his hair was beginning to grow back. Mattie had completed three massive surgeries (two limb salvaging surgeries and a sternotomy) but it was before we learned that Mattie's case was terminal. I snapped a picture of Mattie with Anna, his physical therapist. Anna had tried using a front faced walker with Mattie, but he refused to step an inch with it. For some reason it was hard for him to manipulate it especially since both of his arms were weak from surgery. So then one day Anna decided to let Mattie use the walker you see in this picture. Mattie gravitated to this walker, and also to the antics Anna planned for him. Around the physical therapy hallways, Anna placed whoopee cushions in strategic locations for Mattie to find. Mattie was motivated to walk to them, just so he could stomp on them and hear the funny noise they made. Naturally such a noise was absolutely hysterical to a seven year old! You can see as Mattie was stomping in this photo, Anna was also laughing right alongside him. This only further egged Mattie on and inspired him to find the next noisy target.

Quote of the day: You live with the fact that you will never feel pure joy again. It will always be tinged with the sadness of longing. Every happiness is weighted. It's like a vise slowly squeezing your heart. Whenever you feel happy, you remember that your child isn't here to share it, that she isn't here to have the joy in life she deserved to have. It's always that minor chord intoning in the background. ~ Margot

Today I went to my third doctors appointment for the week. When my doctor came to examine me, alongside her was a medical intern. A medical intern is in essence a physician in training, in which he/she has obtained a medical degree but is not licensed to practice independently. Keep in mind that today was this medical intern's FIRST day of clinical work and to conduct a clinical history/intake. GOD help him!

I strongly believe the social sciences need to become better integrated into medical education. I am sure medical schools are excellent at drilling INFORMATION and skills into the heads of their students, but the art of interacting with a patient is NOT taught! I would imagine this is deemed an undervalued or unnecessary skill. Yet if med students had to take even one semester of interviewing skills and the art of human dynamics, I suspect in the long run this would make them more effective doctors. Because with patients the art of communication is not in facts and numbers captured in a chart, there are more subtle non-verbals that I think most physicians miss. It is within these non-verbals that many issues and problems lie. However if you aren't looking at the patient then you won't see these clues, and if you can't see them, you most definitely can't explore them (which produces an inaccurate assessment and treatment plan). I suspect doctors miss a great deal of the non-verbal messages patients send them for various reasons. The first reason, is they are poorly trained in communication and interviewing skills, the second reason is they are not given the time necessary for a true meaningful interaction/exam with patients, and third, in our litigious society, everything has to be documented. Which of course is important, but having to write or type into a computer creates a visual barrier for doctor-patient eye contact.

Back to today's medical intern. So my physician gave an overview of my history and issues to the intern. One of the issues she tells him about was Mattie. He registered that and did say he was sorry for my loss. But you could tell he was just overwhelmed, a deer in the headlights, and the notion of doing an intake scared him. The intern began asking me intake questions in front of my doctor. He was literally going through a check list on the computer screen in front of him.  After questions about my medical history, he then asked me if I was anxious or depressed. With that I started laughing! He of course had no idea how to respond to my laughter. At which point my physician stepped in and gave her two cents. Her response was basically that given my circumstances it would be hard not to be anxious and depressed. Yet she went onto say that I run a Foundation and am constantly doing things to help others. I listened to her explanation. The explanation fascinated me! Does it mean if you help other people and think outside of yourself that you can't possibly be depressed or anxious?! I knew what she was saying about me, but I can definitely say you can be active, do things for people, and still feel anxious and depressed!

I would like to end tonight's posting with a message I received from my friend and colleague. Nancy wrote, "your comment about Maya and Mattie meant a great deal to me. It reminded me how our friendship took a deeper turn when you were so helpful and compassionate during the time of my Mom's decline. I felt so helpless and sad that my relationship with my mom was not as it had been and your dissertation and thoughts normalized so much for me at that time. That is what I took away from the description of the photo of the two children. You said it perfectly when you mentioned how it allowed Mattie and Maya to be children, while cancer was robing them of their childhood. For me, friendship is being able to hear and understand the depth of the words, not just hear the sounds through one's own filter."

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