Mattie Miracle Walk 2023 was a $131,249 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

August 11, 2017

Friday, August 11, 2017

Friday, August 11, 2017

Tonight's picture was taken on September 24, 2008. This was Mattie's second month of chemotherapy, but it was before his first surgery. So he still could run, play, and function quite well. That day, Mattie's preschool invited him back to the school to play with a friend on their playground. Mind you by this time, Mattie would have technically been in first grade. But we had a very close tie to Mattie's preschool. As you can see, Mattie was on the slide and his friend, Alex, was running underneath. Mattie had two wonderful years at this preschool and on this playground. It was there Mattie made some of his closest friendships, as did I. Many of our Foundation loyal and dedicated volunteers are moms I met during our preschool days. This playground playdate was a bright moment during a very tumultuous time. Several of Mattie's teachers and the preschool's director were on the playground with us, and we sat and chatted while the boys played. 



Quote of the day: For me, I am driven by two main philosophies: know more today about the world than I knew yesterday and lessen the suffering of others. You'd be surprised how far that gets you. Neil deGrasse Tyson



In January of this year, Peter and I visited this hospital. It is the Clinical Center at NIH, or otherwise known as Building 10. Why were we there? Because our lead researcher of the psychosocial standards works in this building and invited us to do a lunch time presentation on the Standards for clinical staff. I have to admit it was an impressive structure and you could tell that you are surrounded by the best and brightest.... devoted to either finding treatments for cancer, or meeting patients and families psychosocial needs. 

I really did not give much thought to what actually took place in this huge structure when I visited it, but then I turned on the Discovery Channel last night and found out they were televising a three part series called, First in Human. I have to admit at first, I did not get the title. But then as the show explained that a first-in-human study is a clinical trial where a medical procedure, previously developed and assessed through in vitro or animal testing, or through mathematical modelling is tested on human subjects for the first time

First in Human highlights some of the clinical trials occurring in Building 10. It features the scientists, researchers, clinicians and FOUR patients/families over the course of three, two hour episodes. I found this first episode absolutely fascinating. Not only because such cutting edge science is occurring in this brick structure, but I think what stopped me in my tracks was the courage and bravery of the patients who are willing to enroll in such a clinical trial. A trial where scientists truly do not know the impact, effectiveness, or side effects that will occur when a drug is given to a human. So you maybe asking yourself.... why would a patient ever sign up for something so risky? Well the answer is simple...... standard treatment has failed them, and this is in essence their last resort. Their choice is either definitely die or potentially thrive with experimental treatment. Experimental treatments like this provide hope. 

Here is a little more about Building 10.... it is the largest hospital in the United States that is completely devoted to clinical research and it opened in 1953. At the current time, there are over 1,600 different clinical research studies in progress. Patients volunteer to take part in research and, so far, the hospital has seen over 500,000 patients. Some of the pioneering work at this center include curing solid cancerous tumors, treating heart attacks with nitroglycerin, and the identification of genetic components in schizophrenia. Other important areas of research at NIH include creating blood tests to identify both hepatitis and Acquired Immune Deficiency Syndrome (AIDS).

This documentary is vivid, real, and the subject matter isn't little. But it is well done and worth watching. It airs on three sequential Thursday evenings on August 10, 17, and 24, at 9:00 p.m. ET/PT on the Discovery Channel. They are following four patients, who I listed below. One of whom I know has lost his battle to Leukemia. I know there is little comfort that the death of this young man has for his parents and wife, but without a doubt Bo died not only trying to save himself, but also trying to provide data on his disease that would help patients in the future. I would say that Bo, patients like him, and their families are true unsung heroes. 

Bo: Acute Lymphobastic Leukemia (died)
Deidra: Sickle Cell Anemia (disease free now)
Lucy: Job Syndrome (in treatment)
Anita: Melanoma 


A trailer about the series:

https://www.nih.gov/health-information/first-human


Depending upon your TV provider, you maybe able to see the First Episode by clicking on this link:

https://www.discovery.com/tv-shows/first-in-human/full-episodes/admission


No comments: