Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 Success!!!

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: www.mattiemiracle.com 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

February 8, 2017

Wednesday, February 8, 2017

Wednesday, February 8, 2017

Tonight's picture was taken in March of 2009. Sitting next to Mattie is Linda, Mattie's child life specialist. Linda was a God sent to Mattie and our entire family, which is one of the reasons I was adamant to establish the Mattie Miracle Child Life Program Fund at the Hospital. That day, there was a ribbon cutting ceremony to officially launch the opening of the child life playroom. Linda asked Mattie if he would like to cut the ribbon at the ceremony. Naturally Mattie said YES! Linda knew Mattie thrived on responsibility. 


Quote of the day: I glanced out the window at the signs of spring. The sky was almost blue, the trees were almost budding, the sun was almost bright. ~ Millard Kaufman


The past two days in Washington, DC felt just like spring. The sky was blue, the sun was shinning, and it made you just want to be outside and walking in it! Of course with Sunny, I am outside and walking in anything. 

This was my morning view. I had Sunny on the couch with me and Indie on the floor trying to look out the window. This position did not last long for any of us, because as soon as I finished my cereal, we were all up and about. 
On one of my Sunny walks today, we walked passed the Kennedy Center. Right in front of it, there are cherry trees blooming. I really think they are confused with the heat. There were literally three people photographing these trees. They were enamored by the pink color and fragrance and I have to say when you pass them you can't help but be drawn to them and want a closer look. 


I did many things today, but one of them involved critiquing the work of a college class in Canada. Mattie Miracle is working with a university in Canada this semester that has adopted us for a community service project. This psychology class is trying to summarize the Psychosocial Standards of Care. There are 15 standards and they are creating two versions..... a summary of each standard for families and a summary of each standard for health care professionals. I have to say the summaries for health care professionals was easier to read and follow than the summaries for families. 

I would like to think that one doesn't have to live through a childhood cancer experience to have certain insights, but in all reality that may not be fair. Everything about childhood cancer is like being dumped into a foreign culture and you have to learn to navigate it on your own. So in essence there are things you could never know if you haven't lived them! In any case, the overall issue I had with what I was reading was the fact that students interpreted the standards as things families should be doing. For examples, families should talk openly to medical providers, that families should reach out to their child's oncologist after the death, etc. Needless to say as I was reading this, I had a very visceral reaction to it because the standards were not designed to be punitive to families nor to put the onus on them to identify their psychosocial issues and to provide the care. The purpose of the standards is to empower families so that they feel comfortable in identifying and addressing their child's and their own psychosocial needs and to know that treatment sites can provide services and interventions to help. In a way the standards are like an evidence based awareness and advocacy campaign for families and yet that wasn't how they were interpreted by the students. So fortunately the class sought my feedback along the way because I wouldn't have wanted to see this at the end of the semester. 

1 comment:

Margy Jost said...

Vicki,

I might have had to be pulled to get up and get going after seeing how cozy, Sunny & Indie looked. I really admire your walking. I know now you have Sunny but even before Sunny, you were walking, posting pictures of beautiful sites. The Cherry Blossom trees are confused but they all show what we can look forward to seeing shortly..

It seems a good project to separate Providers from families in their interpretation of the Standards of Care! I agree that the onus of communication, knowing how to navigate it, should not be on families. Most people, not having first hand experience of their child having cancer, are limited in understanding. Of course, this is my own opinion and certainly many people think, they know. But this heartache can't be imagined. The first step in providing support to a friend whose child has Cancer, is to acknowledge, I don't know what this is feels like. To me The Standards of Psychosocial Care should help alleviate parents from having to search & search for ways to help their child on another equally important part of treatment!