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 12, 2017

Thursday, January 12, 2017

Thursday, January 12, 2017

Tonight's picture was taken in December of 2006. Mattie was on the Jungle Queen, a riverboat that takes you on intercoastal tours and to a tropical island that features an alligator show and other rare animal sightings. Mattie loved the adventure and enjoyed pretending that he was steering the boat. Mattie had a passion for being on the water and his one wish was to own a real boat. NOT a toy boat!

Quote of the day: To conquer frustration, one must remain intensely focused on the outcome, not the obstacles. T.F. Hodge

My morning started by talking to a few staffers on the Hill about the upcoming Roundtable event on January 24. They wanted to alert me that our event starts at 8am, however, the catering folks do not report to work until 7:30am and therefore there wouldn't be a enough time for set up. They requested that I change the start time to 9am. If the event was a month away, maybe, but not when we are less than two weeks away! There are people commuting from all over to attend this invitation-only event and I can't expect people to rearrange trains and planes for this last minute issue. It would make Mattie Miracle look completely unprofessional. I have to say I was deeply frustrated when I got off the phone this morning, because yesterday I spoke to the Capitol Hill catering team and NO ONE mentioned my start time as being an issue.

I admit after the call this morning I was frustrated and wasn't sure how to handle this. However, my rational side took over and I decided to email my catering contact and copied the staffers from this morning's call on the email. The cater wrote back immediately and told me that her staff would be on site two hours before my event and that this isn't a problem. It makes sense to me since everything on the Hill starts early, and I just couldn't imagine catering not on site early as well. Thankfully I have a can do attitude that took over, because initially I wanted to say THIS EVENT JUST CAN'T be done. Mind you other issues have unraveled throughout the week that led me to this conclusion. 

But we are back on track this evening and for those of you wondering, the Roundtable is an event in which we are bringing in researchers, insurance companies, legislators, and cancer advocates to strategize ways to move the Psychosocial Standards of Care forward. Thirty people will be in attendance, which is also hysterical since the room they assigned us on the Hill is small. This is very reminiscent of 2012, when we held the first ever psychosocial symposium on Capitol Hill. It was at this event that we charged the research community to develop standards of care. In 2012, the congressional offices gave us the smallest possible room in the Capitol Hill Visitors Center to host the event. In their minds they probably thought..... who is interested in psychosocial care and childhood cancer? After all the big advocacy push is for the medicine! Needless to say the room's capacity was 85 people in 2012 and I had 120 people who wanted to attend! We managed and it was a great success!

I tell you this because I am used to operating in small rooms on Capitol Hill, but the room we are assigned on January 24 sounds like it is as big as a storage closet. I have been working for two days with catering on how to fit people in this room to work and also eat! It won't be pretty! 

In any case, we have ten professional speakers. The speakers will lead the conversation in six topical areas (resourcing, outcomes, legislative/policy, delivery models, reimbursement, and re-accreditation). The participants will hear from the speakers for about twenty minutes on each topical area, and then discussion questions will help guide each of the topical areas for attendees. Thankfully our corporate sponsor, Dominion Consulting, has agreed to serve as moderators at our event and they even will assist us in developing a summary report once the event concludes. We have hired a professional photographer and audio recorder for the event as well. Breakfast, lunch, and snacks have been planned and we will even be visited by three congressional members (who will receive childhood cancer champion awards from us) who will give our attendees greetings! So there are many people and logistics to manage. In addition to planning for hotels and travel for ten out of our thirty attendees! 

1 comment:

Margy Jost said...

Thank you Vicki for further explaining what hapens at the RoundTable Conference! I feel certain the day will be a success! I look forward to reading more!

I love Mattie's picture tonight. I wish Mattie would have lived and gotten his boat!