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: 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 16, 2017

Thursday, February 16, 2017

Thursday, February 16, 2017

Tonight's picture was taken in February of 2006. That was Mattie's first year of preschool and all the children were exchanging cards with one another for Valentine's Day. We could have bought cards, but I decided.... why not make them together. Mattie loved hands on crafts and projects, especially when I converted the living room floor into an art studio. We made some beautiful cards together and I am so glad I have these memories. 

Quote of the day: On Valentine’s Day, we are reminded what our relationships could be like the other 364. Steve Maraboli

As we were leaving DC this morning, Peter snapped a photo. You can see the Washington Monument right in the middle.
 Still over DC!
This was a photo taken while we were on descent to Orlando. There wasn't a cloud in the sky but lots of wind. It is in the 70s, but with the wind it is chilly. I am in two jackets and wearing tights and feel very comfortable!
This is a view of the conference hotel. I would say it looks better in a photograph than it actually is! 

How do I feel about attending conferences...... well to me it is a very conflicted feeling I have being here. Naturally it is wonderful to share Mattie's story, to highlight the standards, and to engage other minds and hearts into the project to implement standards. Yet on the other hand when I am surrounded by clinicians and researchers, they tend to think they are the gurus on cancer. Certainly they are from a professional standpoint, but regardless of how many years in the field they work, they do not share the lived experience with us. Having your own child diagnosed and die from cancer puts a whole other lens of complexity on the situation. Therefore hearing discussions about what works and things that need to be done to make care more effective, makes me laugh internally. Because you know the feeling when you are listening to a conversation and you have insights into the discussion that no one else has! Yet others know you have these insights and aren't curious to hear them.... that causes great frustration and stress for me.

Before Mattie developed cancer, I attended many conferences as a mental health professional. I even had leadership roles within several national associations. Perhaps it is my understanding for the politics behind associations that clouds my view point of them. Either case, I found I needed to retreat today from hearing this networking chit chat. Our 90 minute plenary starts tomorrow at 12:25pm. Mattie Miracle has paid for many of the speakers to present on this plenary... and the speakers range from researchers/clinicians, to parent advocates and a childhood cancer survivor. Mattie Miracle feels that hearing from a survivor and parents is crucial and adds a vital dimension to the presentation. But it wasn't only the presentation. The standards had families involved throughout their development process. Again, from my perspective you can't develop tools for a population without involving the population in question. That may seem like a no brainer, but this is something Peter and I advocate for all the time..... giving children and their families a voice.... in research and in directing clinical care.

1 comment:

Margy Jost said...

Vicki, As a PlayLady, your hands on Vantine project was in the scope of many activities, the children did with the materials provided. It was such fun to see each child's own idea of what his project should look like. Seeing your transformed room as an art studio makes me so happy. It looks like the perfect places for Mattie to be in his artistic glory!
As a PlayLady, I always saw 2 positions to th job. The first was to provide diversion for the children, whether it was a short visit or long. The play table was the place where the kids could choose how they wanted to spend their time! Of course there was constant movement to see the Dr., get blood drawn, get connected but all the while activity was proceeding. The other part was as an active advocate for the parents. This included many areas to help parents use their voices to be heard. They after all, lived the life of childhood cancer with their child. Without this important acknowledgement, communication that is vital will be lost. Parents & children know what they need in the area of psychosocial support. They need the advocate to make sure their voices aren't lost while all focus is on medical management of childhood cancer. The two areas have to bee on the same page! It is essential! Thanks to Mattie Miracle for working so hard & diligently to make this happen!