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

July 14, 2020

Tuesday, July 14, 2020

Tuesday, July 14, 2020 -- Mattie died 563 weeks ago today.

Tonight's picture was taken in July of 2007. That weekend we took Mattie to Roosevelt Island to walk. There were several places on the Island that Mattie loved to visit. Including climbing on this big rock. Every time Peter and I pass this rock now, we of course think about this moment in time. 


Quote of the day: Today's coronavirus update from Johns Hopkins

  • number of people diagnosed with the virus: 3,407,798
  • number of people who died from the virus: 136,252



One of the things we are managing for my parents is to sell one of their cars. My dad can no longer drive, and therefore caring for two cars is too much for my mom. We have been working on selling this car for weeks now. Finally, we came to an agreement with the dealership that sold them the car. They are willing to take the car. Wonderful, no? It would be if people actually followed through on their job or their promises. It has been a nightmare working on this from afar. If Peter and I were in Los Angeles, we would have shown up at the dealership in person until everything was done. Not as easy when we are 2,500 miles away! Any case, last night I called to check in on my mom. She was in an overwhelmed, tired, and snappy mood. Which then was directed at me. I get this all too well, as caregiving is not new to me. But by the time I finished a very short call, a migraine was triggered. I literally went to bed last night with my head spinning and unfortunately it did not improve today. Since I got back from Los Angeles, I am not sleeping well and have nightmares every night. Not unlike my sleep when Mattie died. It is interesting how one issue can re-trigger another. 

In the midst of everything else I did today, I started to research delirium. Which I am quite certain my dad developed during his first hospitalization in May. When I arrived in Los Angeles on June 9th, my dad was out of it completely! My mom reported this to be a sudden decline in his cognition, and I knew the stages of dementia don't move this quickly. Yet people with dementia are susceptible to getting delirium, especially when hospitalized. Because of COVID-19, my mom wasn't allowed to visit my dad in the hospital, and I am quite sure with months in lock down and then hospitalization, it was the perfect storm for my dad to develop delirium. As not having the consistent routine of leaving the house, having lunch out, and interfacing with the world, prevented my dad from maintaining a certain level of cognitive function. Which is why I psychosocially blame COVID-19 for my dad's cognitive and physical decline.  

In any case, I wanted more information on delirium and dementia and came across the wonderful article below. The article connected me to an informative site about brain training and its importance of expanding our cognitive reserves, to combat the development of dementia. I have been looking high and low for cognitive based exercises on-line for my dad to do daily. I found a great site created by a neurologist and I enrolled myself, so I get one free brain exercise daily. I sent the link to my mom and I am encouraging my dad's caregivers to do these games with my dad daily. 

I am aware of the significant issues my dad is facing. But it seems to me it is never too late to try to stimulate neurons and connections. As I always said to Mattie, I wouldn't ask him to do something I wouldn't do! So I am doing the exercises myself. As part of me fears that I too will develop dementia, and therefore want to be pro-active about physical activity (By the way, activity level has been connected with dementia, as has walking speed. The more active you are and faster you walk, the less likely you are to develop dementia) and brain stimulation.

Delirium in Early-Stage Alzheimer’s Disease, Enhancing Cognitive Reserve as a Possible Preventive Measure:

Delirium is superimposed on dementia (DSD) when an acute change in mental status (characterized by a fluctuating course, inattention, and either disorganized thinking or an altered level of consciousness) occurs in a patient with preexisting dementia. Several studies have reported higher rates of hospitalization in individuals with dementia compared with those without dementia, which may put them at risk for developing delirium. Delirium often occurs in the hospital setting.

The onset of delirium is associated with poor outcomes, including functional decline, increased hospitalizations, increased health care use, nursing home placement, and death. A study by Fick et al. (2005) found patients with DSD had the highest health care costs and use compared with patients with delirium alone, dementia alone, and those with neither dementia nor delirium. Prevention and improved management of delirium in dementia is clinically important and urgently needed.

Active reserve is often referred to as cognitive reserve and posits that individuals differ in the degree of efficiency with which they can use brain networks or cognitive strategies to cope with brain pathology. These differences are hypothesized to be due to mental stimulation that individuals are exposed to over a lifetime, including level of educational attainment, occupational complexity, and the mental complexity of leisure activities. One possible mechanism for delirium prevention in early-stage Alzheimer's Disease (a form of dementia) is the enhancement of cognitive reserve in individuals with dementia.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2814421/

This brain training program cuts dementia risk:

A large 10-year study investigating the benefits of a brain training program for older adults found that training designed to improve processing speed and visual attention in particular reduced dementia risk.

A decade after training began, the scientists found that 22.7% of people in the speed training group (using cognitive games on the computer) had dementia, compared with 24.2% in both memory and reasoning groups (face to face training without a computer). In a control group of people who had no training, the dementia rate was 28.8%. It's suggested that some of the reason for this effect may be that the training builds up brain reserve, perhaps by improving brain efficiency, or in some way improving the health of brain tissue.

https://www.memory-key.com/tags-problems/prevention-mental

Brain Training that works:

The BrainHQ brain-training program represents the culmination of 30 years of research in neurological science and related medicine. It was designed by an international team of neuroscientists, led by Michael Merzenich—a professor emeritus in neurophysiology, member of the National Academy of Sciences, co-inventor of the cochlear implant, and Kavli Prize laureate.

https://v4.brainhq.com/?fr=n&signup=success&v4=true

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