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

January 23, 2020

Thursday, January 23, 2020

Thursday, January 23, 2020

Tonight's picture was taken in January of 2006. That day I brought two gingerbread houses to Mattie's preschool. I baked and assembled them myself. I also brought in royal icing and lots of different candies for the children to decorate the houses. It was such a fun activity that literally all four classrooms at the school got a chance to rotate in and decorate the houses. At the end of the day, Mattie got to take both houses home. You can see Mattie posing with the finished products! Mind you prior to this activity, I had NEVER baked a gingerbread house before. Mattie introduced me to many FIRSTS.



Quote of the day: A man who carries a cat by the tail learns something he can learn in no other way. ~ Mark Twain


Tonight's quote makes me laugh! I laugh and yet there is SO MUCH truth to Twain's quote. Anyone who has a cat as a pet, realizes what will happen to you if you pick your cat up by the tail. If you don't know this, then after trying it, I bet you will never forget the outcome! By analogy, I would say after experiencing Mattie's cancer first hand, I have learned lessons that others may not intuitively know. This brings me to yesterday's conference that we attended. 

We had the opportunity to hear a presentation by Dr. Kristina Hardy at  Children's National Medical Center (Washington, DC). The presentation was entitled, "Neuropsychological sequelae following diagnosis and treatment of pediatric cancer." It is pretty much understood in the cancer world, that treatments that involve radiation to the brain will produce cognitive impairments (such as lower attention span, short and long term memory issues, and executive functioning problems - organizational skills, time management, and planning). 

However, what we learned yesterday is that researchers are realizing that ALL children with cancer maybe facing these same cognitive impairments, even if their central nervous system wasn't exposed to radiation. Why? Because chemotherapy in general causes neuroinflammation and cardiopulmonary issues, which can prevent oxygen and other nutrients effectively getting to a child's developing brain. 

Given our experiences with Mattie's horrific treatment, I wouldn't be surprised if he faced these cognitive issues post-treatment. Of course we will never know, and in Mattie's case, his level of trauma and anxiety would also need to be taken into account, because to me trauma would have a direct impact on his ability to focus and his working memory. 


What also intrigued me is the younger a child is at diagnosis the more significant cognitive impairment may occur if the child received cranial radiation. Compare a child who is 12 versus 5 at diagnosis. By age 12, several skills have already been learned. The child had a longer time in school and has experienced social interactions. For children who have had cranial radiation, research indicates a 10 point decline in IQ for a child who is 5 years old at diagnosis, compared to a 12 year old (this figure illustrates what I am talking about). We also learned that there is NO known treatment to improve declines in IQ scores. So clearly the younger a child is diagnosed, the more significant the consequences. 


I took photos of Dr. Hardy's slides. This slide illustrates that children with central nervous system tumors and Acute Lymphoblastic Leukemia (ALL) typically have cognitive impacts.  
This slide caught our attention, because it mentions that cognitive impairment may occur in people with solid tumors (in other words, treatment that does not involve cranial radiation). 
This slide lists other forms of childhood cancer. Cancers that do not require cranial radiation. Yet in these cases the treatment impacts hearing and the heart which can also produce cognitive deficits. With the heart, nutrients aren't getting to the brain, and with hearing.... if you have trouble hearing what is being said to you, this will directly lead to cognitive challenges and difficulties. 

Look at this graph. The top arrow points to the expected cognitive development of a child. The bottom arrow applies to the same child, except it shows the decline in cognitive development after being diagnosed with cancer. I think this whole notion is frightening, because it shows the long term ramifications of cancer on a child. In essence the treatment permanently alters a child's potential in life. This has huge consequences for the entire family. Which is why there really is NO cure for childhood cancer. How can there be, when children are left with such devastating consequences. They may have no evidence of disease as the medicine beat back cancer, but it comes at a high price to one's overall long term quality of life. 

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