Mattie Miracle 15th Anniversary Video

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

October 13, 2017

Friday, October 13, 2017

Friday, October 13, 2017

Tonight's picture was created by Tim Beck, our Facebook friend. Tim sent it to us today and it is always a lovely surprise when he sends us a Mattie collage. At the center of this collage, was a photo I took of Mattie sitting on a white rocking chair in October of 2002. Mattie was only 6 months old and holding onto a real pumpkin. Then Tim superimposed on the pumpkin a photo I took of Mattie on Halloween of 2003. So in essence you are seeing the progression of Mattie at Halloween in this composition. All the other photos surrounding these central photos, are other Halloween photos of Mattie throughout the years.  


Quote of the day: The meaning of life is to find your gift. The purpose of life is to give it away. ~ William Shakespeare


Yesterday while attending an International childhood cancer conference, I heard mention of the fact that childhood cancer survivors experience aging at a faster rate than their non-cancer peers. This nugget of knowledge stayed with me all day until I decided to look up the research study that addressed this premature aging finding. Clearly, premature aging has great consequences on one's physical health and longevity of life.

Can you imagine managing this as a parent, and having to help an adult child cope with these bodily changes? Some of these adults were so young when they were diagnosed that they do not even remember their cancer journey. Yet their cancer can never be forgotten, even if they have no memory of the treatment. The problem with childhood cancer is that toxic medications are given to developing bodies and minds, unlike with adults, therefore children are more likely to deal with many long term effects from the treatment (e.g., heart issues, diabetes, secondary cancers, infertility, high blood pressure, hearing loss, eating disorders, addiction, depression, anxiety, ADHD, etc). When you think about all these chronic and life threatening issues that can arise in adulthood, it shouldn't be that surprising then that the body ages from all these stresses. 

Below are the specifics on the survivorship study on aging. I think you will find this enlightening, and yet like many aspects of childhood cancer, this too is not typically discussed. Yet like I always say..... the psychosocial issues do not end when the treatment does. Here is yet another example. 

St. Jude (located in Tennessee) is the coordinating center for the Childhood Cancer Survivor Study (CCSS). This multi-institutional collaboration is the world’s single largest resource for survivorship research. The data from this large study indicates that young adults who survived childhood cancer are more likely than their peers to be frail. Researchers also found that frail health was associated with a greater risk for adult childhood cancer survivors of death and chronic disease. 

Being frail was defined by the presence of at least three of the following – weakness, self-reported exhaustion, physical inactivity, low muscle mass and slow walking speed. In the general population, being frail is most commonly associated with advancing age.

In this study of 1,922 childhood cancer survivors, 13.1 percent of women and 2.7 percent of men qualified as frail despite having an average age of less than 34 years old. In a comparison group of 341 young adults with an average age of 29 years old and no history of childhood cancer, none qualified as frail. Nationally, an estimated 9.6 percent of women age 65 and older and 5.2 percent of men in the same age group meet the definition. The unexpectedly high prevalence of frailty among childhood cancer survivors suggests accelerated aging.

Adult Survivors of Childhood Cancer Article:

https://www.stjude.org/media-resources/news-releases/2013-medicine-science-news/adult-survivors-of-childhood-cancer-at-risk-of-becoming-frail-at-an-early-age.html

1 comment:

Margy Jost said...

Vicki, I think Timothy Beck is a Master of excellent photography. Of course, Mattie's pictures are beautiful. But how he interprets them in his collage is truly heartwarming.

Your blog tonight sent a wave of sadness through me. I knew some special kids who survived their cancer but did exactly what the study is finding. They aged prematurely and all died before 30. Chris died of a heart attack but his quality of life leading up to his death was not good. He was barely living as he had chronic pain in most of his joints. He had already had his one should replaced and was waiting to have the other when he died. Anna was treated as a young child diagnosed with ALL.. She relapsed on treatment so went to U of M hospital for a transplant. After that she did well. She did have cataracts removed at age 10. She did need endocrinology for several endocrine problems. She had concentration issues but managed to do well in school despite them. She always had fatigue & what everyone thought of as small issues after all she survived cancer. She went to college but then in her Sophomore year began experiencing a myriad of problems. They just kept increasing, she dropped out of school, spent a year just resting, then died from totall organ failure. In the end her lungs just stopped working. I have been to several funerals where the young adult died from problems that affect the elderly. There is no talk of these problems. All parents kemp the risk of relapse & secondary cancers but aging prematurely is not very known in the Childhood Cancer Community. Yet, it is happening and it is another tragedy from an unfair diagnosis. All these young people could have benefitted from Psychsocial support following the end of treatment. They all participated in the late effects clinic but no one said fatigue was from past treatment. No one said anything about aging earlier and there was no support!