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

July 28, 2016

Thursday, July 28, 2016

Thursday, July 28, 2016

Tonight's picture was taken in October of 2002. Mattie was six months old and I am not sure what I love more about this photo! Clearly this was NOT a happy Mattie. Which the face reveals! Mattie for the most part despised his strollers. I mean really HATED them, which was why we went through at least three strollers with Mattie until we found one he tolerated. Mattie did not like to be seat belted into place, and really did not like his feet being up in the air and not touching the ground. Yet when I look at this photo it reminds me of myself! I swear, I make that same face at times, and one of the amazing things about Mattie, was I was able to see myself within him on so many occasions. Which maybe why I understood his thinking and behaviors so well. 



Quote of the day: Faced with crisis, the man of character falls back on himself. He imposes his own stamp of action, takes responsibility for it, makes it his own. ~ Charles De Gaulle


The oncology Nurse Advisor had an article circulating on Facebook recently entitled, Comprehensive mental health screening recommended for some childhood cancer survivors. This article is getting a lot of traction on social media and what continues to stun me is this reality seems so shocking to most. I posted a link to the one page article below, but in essence the key point is this.........

Screening survivors for attention problems alone might miss symptoms of anxiety, depression, or headstrong behavior, which means missed treatment opportunities," Brinkman said (this is the article's author). Dr. Brinkman noted that adolescents with untreated attention problems and headstrong behavior are at risk for substance abuse as adults, and survivors with those symptoms may benefit from substance abuse prevention efforts during adolescence.

The words screening and assessment are almost buzz words today. Yet in the health care system conducting such a screening or assessment for mental health issues are almost unheard of. Well that is until recently!!! In the adult cancer world, they have made it mandatory for distress to be screened AT LEAST once ANY TIME after a patient has been diagnosed. To ensure that hospitals comply with this screening, such a standard of care has been added into the hospital re-accreditation process. Therefore if hospitals want to be re-accredited, then they need to screen and comply. 

Again this all sounds good in theory, but the better question is so what? So you screen, but what do you do with that information? That is the REAL question. What is the follow up like??!!! Certainly most hospitals will refer patients out into the community for mental health care if their distress score/measurement is high enough, but how likely is this to work? Well it may work better in the adult world than in the childhood cancer space. Mainly because it is hard to find the time to leave the hospital to seek this community support with your child (given the intensity of treatment -- there are few days out of the hospital) and second even if you have the time, very few practitioners in the community are well versed in the psychosocial complexities of childhood cancer and the impact on the family and the future.

We are at the stage right now were educating and bringing awareness to the psychosocial ramifications of cancer MUST happen in our society. Clearly the ultimate goal families wish to achieve is to have their child survive cancer. But surviving cancer comes at a high price. As I always say, the psychosocial issues DON'T end when the treatment does. In many cases, for both the child and the family, these issues last a lifetime. Knowing this, then why is the constant mantra and focus solely on the medicine? It is my hope in my lifetime that the message truly gets expanded into practice and that we see medicine and psychosocial care truly integrated into effective comprehensive cancer care. Until then, I realize I have a job to do!

Comprehensive Mental Health Screening Recommended for some Childhood Cancer Survivors

http://www.oncologynurseadvisor.com/side-effect-management/robust-mental-health-screening-encouraged-for-select-childhood-cancer-survivors/article/512097/

1 comment:

Margy Jost said...

Vicki,

In looking for any recent posts, I may not have left a comment,I saw this one. Not sure if I combined comments but it is worthy of commenting again.. I know patients who have survived and their is absolutely no psychosocial support for all they go through psychologically as a survivor. First, they have to learn to accept all the things that changed forever in their life despite the fact. That while chemo was ridding them of cancers, it was also destroying health areas. So life is an adjustment apart from the physical side. Having been a cancer patient, confined, unable to join many things, insecurities creep into thoughts and actions. There are many young adults walking around this world with needs of care from both areas,