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

January 21, 2016

Thursday, January 21, 2016

Thursday, January 21, 2016

Tonight's picture was taken on January 11, 2009. We were in NYC, in order to take Mattie to Sloan Kettering to start an experimental treatment. I will never forget checking into the Affinia Gardens Hotel. They took one look at what we were balancing and Mattie's situation (dealing with cancer and being wheelchair bound) and decided to give us a suite at no extra charge. This suite was incredible. It had two bedrooms, two bathrooms, a kitchen and balconies over looking the city. As you can see, Mattie was attempting to walk or at least stand. But for the most part, Mattie could no longer take steps and move independently after his limb salvaging surgeries in November of 2008. 

Quote of the day: Death. It’s around more than people realize. Because no one wants to talk about it or hear about it. It’s too sad. Too painful. Too hard. The list of reasons is endless. ~ Jessica Sorensen

I received an email today from a doctoral student who is doing research on legacy planning with bereaved parents. She was writing to see if we would help her find subjects for her study. Having been in her shoes before and knowing it can be hard to find subjects for one's dissertation, I decided to fully read her message and to learn more about her study. By training she is a child life specialist, so she already caught my attention. It is also unusual that a student would want to investigate bereavement and bereavement associated with child loss. Yet I really value research is valuable and I want to support it. 

When I heard the work legacy planning, an alarm went off in my head. Peter and I went to a conference once where a social worker talked about the benefits of legacy planning. That one can do this when your child is still alive so that your child can direct how he/she wants to be remembered. Needless to say, we obviously did not have time to talk about death and dying with Mattie, nor did we do any legacy planning. Therefore the conference session made us truly depressed and also made us feel like we let Mattie down. So naturally when I read her dissertation would be examining legacy planning, my head started to shake back and forth. Until I read her definition of legacy planning and what she meant about it. Legacy planning from a child life perspective means doing something active like creating hand and footprints of the child. Some parents turn to these molds after the child dies and find great comfort in them, where as others do not. 

As I was reading about her study, I immediately remembered the many hand and footprints in clay that were created of Mattie. We did this two different times. One time a friend of ours came into Mattie's PICU room with a clay hand print kit and while Mattie was dying, we made a mold of his hand (photo on the left shows Mattie's hand print). Mattie was alive but not conscious to what was going on. The second time we made molds of Mattie's hands and feet, he had just died. Specifically, we did them about two hours after Mattie died. I have to say I feel very differently about the mold created when Mattie was alive versus the ones created after he died. The molds created after Mattie died are in boxes and we NEVER look at them. I know where they are in our living room, but I refuse to either see them or get rid of them. Whereas the other other mold created when he was alive is on display in our living room. 

I think it does matter the context and the environment in which hand/foot prints are created. Having these reminders is a mixed blessing, when they were created under duress they do not represent the spirit and essence of Mattie. Instead, they only remind me of the cancer. Did I know I felt this way? That I felt differently about these two different sets of molds? Not really, but when asked about them, the emotions and feelings the molds evoke provide immediate responses. What I found intriguing about this is I am not alone and there is a whole research study underway about such legacy planning methods. In any case, not only am I trying to help this student find subjects, but Peter and I agreed to be participants.

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