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 2, 2020

Thursday, July 2, 2020

Thursday, July 2, 2020

Tonight's picture was taken in July of 2008. We took Mattie to the Aquatic Gardens in Washington, DC. Every July the lotuses bloom and are glorious to see. It was an annual tradition. This was a park Mattie loved to visit. Notice that Mattie was holding a toy car in his left hand. Not unusual as Mattie never traveled empty handed. 


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

  • number of people diagnosed with the virus: 2,732,639
  • number of people who died from the virus: 128,651


Don't ask me what happens in the morning around here! I wake up around 6am, make the bed, shower, dress, prep breakfast, and then greet one of my dad's caregivers at 8am. When she arrived today, we went upstairs and greeted my dad. As we were coming up the stairs, my dad managed his way out of bed and was headed toward the bathroom. I walked the caregiver again through the process. We picked out clean clothes for him and proceeded with the showering routine. After which, we lotion and dressed him and supervised him walking down the stairs to the breakfast table. While having breakfast with my mom, the caregiver and I went back upstairs to collect towels and clothes for the wash, and made the bed. 

After breakfast, we encouraged my dad to do his occupational therapy exercises. He always fights us on this request, but he did his six exercises and then rested for an hour before his physical therapist arrived. We try to have structure to my dad's day because if not, he most likely would sit or sleep the day away. Having a routine keeps him up and moving at times, which is important for both his physical and mental health. 

My dad's physical therapist had him walking with a cane today, rather than a walker. Naturally he had a gait belt around him and held it throughout all the exercises. If my dad got off balance or began to fall, the therapist would be able to support and catch him. Of course all this exercising is physically taxing and my dad reports constant exhaustion. In fact as soon as his shower is over, he tells us he is very tired. So we are fighting his chronic exhaustion and his lack of motivation to do any activity or comply with his home exercise program. He constantly tells us we are "beating him up." Which of course is not true, but in his mind, this is how he interprets what we are asking him to do for his own health and recovery. 


All I know is that from the moment we wake up and until we go to bed, we are focused on something. My dad's caregiver is here from 8am to noon. At noon, my dad is resting until we are ready to go out of lunch. I am very aware of the challenges we are facing with the pandemic, but I have to weigh the consequences of not going out. Which would be my dad won't eat and consume fluid. That would lead to a direct failure to thrive, which was how he was diagnosed in May. In older adults, failure to thrive describes a state of decline that is multi-factorial and may be caused by chronic concurrent diseases and functional impairments. Manifestations of this condition include weight loss, decreased appetite, poor nutrition, and inactivity.

On Tuesday, I will be here for one month. We accomplished a lot in a month. Because when I arrived in LA (June 9), my dad hadn't moved from his recliner chair since being discharged from the hospital on June 3. He was wearing the same clothes for a week, and was using a urinal from the chair and not getting up to go to the bathroom. It was a bad sight, on top of which he also had delirium (serious disturbance in mental abilities that results in confused thinking and reduced awareness of surroundings). He refused food and liquid. Since that time, we have definitely made progress. Having structure, a routine, and expectations are important for us at all ages... but they are even more important as we age. 

No comments: