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

September 25, 2016

Sunday, September 25, 2016

Sunday, September 25, 2016

Tonight's picture was taken in October of 2004. To welcome in the Fall, we took Mattie to several Fall festivals around our region. Practically one every weekend. The particular festival pictured here was in Leesburg, VA, and what I loved about it was that they had a petting zoo for kids. As you can see Mattie was very curious about this sheep! Animals, especially large ones, can be intimidating to children. Mattie was cautious, loved observing them, and really wanted to get to know these animals. 



Quote of the day: Tired, tired with nothing, tired with everything, tired with the world’s weight he had never chosen to bear.   ~ F. Scott Fitzgerald



For the past several weeks, I have been very busy with Sunny. He keeps me up, outside, and walking. However, this past Friday, I had a caucus to attend and luncheon. Which meant that I had to sit for several hours in air conditioning and then stand for the luncheon.... in more air conditioning. This is problematic for me. Many of the intense pains I had been experiencing for months prior to getting Sunny had begun to subside thanks to my walking routine and moving away from constantly sitting at a desk. I am not sure how one day away from this routine could impact how I feel, but it has! I am back to feeling achy all over, unable to find a comfortable position, and as such it affects my ability to concentrate and focus on anything. 

That is just the physical result of Friday, but of course there is a psychological component to Friday as well. It is hard at times for me to see that only the biomedical components of care are discussed and these issues SOLELY get the ears of legislators. In addition to that frustration, I find that each year we attend the caucus the message is always the same. There is an update on the medicine, with a discussion of the hope for a medical break through and the elusive CURE. A word I can't stand, because once cancer is a part of your life, it isn't going away. There is always the threat of recurrence, not to mention secondary side effects and psychosocial concerns. Part of the issues that the medicine faces is that  there isn't just one type of childhood cancer, there are hundreds and because the biology of childhood cancer isn't well understood, two children could have the same type of cancer, but respond differently to treatment. It makes for finding better treatments elusive if not impossible. After all, we have made very little progress from year to year. Keep in mind the FDA approved ZERO new drugs for childhood cancer this year, and only three new drugs in the last twenty years. Drugs that aren't targeted to all forms of childhood cancer either!

So why don't people advocate for strategies and services that can help in the here and now? I HAVE NO IDEA. It makes sense to discuss psychosocial care and invest in this care because it is this support that helps sustain the medicine and enhances the quality of life of children with cancer and their families. Psychosocial care isn't only needed during treatment, it is needed post treatment in survivorship, it is needed if there is a recurrence, and it is certainly needed at end of life and bereavement care. My running joke is that I will always have a job, because my job is to change a societal mindset and that kind of change moves at GLACIER speed. 

This coming week, Peter and I have been invited to Indiana to receive an award at a National nursing conference. We are very honored to be the proud recipient of this award from the Association of Pediatric Hematology/Oncology Nursing, an organization that was our first professional endorser of the psychosocial standards of care. It is very generous of them to finance our travel and hotel stay as part of this award package and we look forward to meeting the Association leaders and thanking them in person for their support of the historical psychosocial standards of care! 


1 comment:

Margy Jost said...

Dear Vicki,

I understand completely every part of your blog. I too, am tired and I haven't tried to implement the importantance psychosocial effects on as large a scale as MATTIE MIRACLE HAS. I have, however, seen the difference a well run program can make in the world of cancer, now!!
It befuddles me that so much time is spent discussing the elusive cures for all the reasons, you stated. That is not to say, I want research to discontinue. Quite the contrary, I want Childhoid Cancer research made a priority. The reality though is there are so many Cancers that affect kids and very true that no two kids with the same diagnosis, receiving the same protocol, will respond the same. I have watched kids with a good prognosis at diagnosis and all the cards stacked in their favor for response, relapse on treatment and die. I have been a part of the world of Pediatric Cancer since 1993, and it is disheartening to know of the slow progress for better drugs, to watch kids die when they have hardly begun to live, to see a child return after years off treatment with a secondary cancer, & hard to watch survivors handle all the devastating late effects. There are so many ways in the area of psychosocial support that all these kids/teens/young adults could be helped.
Many people underestimate or discount the strong correlation of response a patient will have in both physical & emotional ways when a good program happens. I wish for MATTIE MIRACLE to make this care a true standard that no one can ignore.

I am sorry that one day out of your routine, returned all the pain. I am hoping, it is better at least to the point of tolerating it.
Your blog is a wonderful gift of honesty about so many things. Thank you!!!