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

July 1, 2020

Wednesday, July 1, 2020

Wednesday, July 1, 2020

Tonight's picture was taken in April of 2002. Mattie was only a day or so old. Since I was recovering from an emergency c-section, Peter took over all of the caregiver duties. In fact, he was the first one of us to ever change Mattie's diapers. I think this is a precious photo that captures the love of a great dad. 



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

  • number of people who were diagnosed with the virus: 2,678,202
  • number of people who died from the virus: 127,970

Last night was another night for the books. By 9pm, my dad was moaning in pain. Again, I could see he was constipated. I will remind my readers that I took my dad to the ER on June 16 because he had an impacted colon. I knew the situation wasn't as serious this time, but that I had to act quickly before it became a crisis. Now one would think that a gastro-enterologist would counsel a family of an older patient, who is sedentary and brought into a hospital with an impacted colon. Counsel us on a laxative regimen! Unfortunately as I learned all too well the health care system is fatally flawed. They may be good at dealing with a problem at hand but TERRIBLE at maintenance and prophylactic care. So when my dad was released from the hospital on June 20, no bowel regimen was provided in the discharge notes. With COVID-19, family caregivers have no interface at all with the hospital staff, therefore, if its not in the discharge paperwork, it doesn't exist. 

Since discharge on June 20, my dad has had minuscule bowel movements daily. Maybe something that looks like the size of a quarter. In fact, every time he had to use the bathroom, a nugget size bowel movement appeared and in the midst of all of this my dad was developing bad to severe gas pains. On Monday night of this week, I called the after hours number for my dad's gastroenterology practice. The doctor on call responded and it was this doctor that talked with us about a daily laxative plan! Where was my dad's doctor? Asleep at the switch! I can say this with confidence because my dad and mom saw their doctor last week in the office (I wasn't allowed back into the appointment, which was a big mistake). At no point in that visit was a laxative plan prescribed! Shame on him!!! 

Any case, last night, my mom called the practice and we spoke to another on call doctor. He understood the severity of the problem and suggested I give my dad two enemas and more senakot. I did administer two enemas, but with age it is hard to hold the fluid in for it to do its magic. So instead, after I inserted it, my dad passed the fluid right back out! It was very frustrating. I helped my dad back up out of bed (a bed which I lined with plastic sheets and chuc pads in preparation for a lot of pooping) and dressed him because I was going to take him to the ER at 10pm. After I dressed him, he said he had to go to the bathroom. It was at that point, he began to poop. In fact, he pooped during the night and had a massive bowel movement today. It was like winning the lottery. My dad told us after he woke today that he had bad dreams about having to go back to the hospital. So clearly all of this has created great anxiety. 

On top of all of this, I was up at 6am. We met a new (the third) caregiver today and trained her on my dad's routine..... getting him up, showered, dressed, given breakfast, and we did his physical therapy exercises together. Later in the morning, my dad's occupational therapist came and my dad did more strength building exercises. So my dad has had a full day, and we are right along side him. 

The challenging part of all of this is my dad doesn't like eating at home. I mean NOTHING! He prefers eating in restaurants. This would be challenging under the best of circumstances, but now with COVID, you have to be a miracle worker. For over three months my parents lived in quarantine. During that time, my dad lost 30 pounds, because he lost his appetite and desire to eat. In addition to losing a dramatic amount of weight, he also developed a urinary tract infection, a kidney stone, and his dementia advanced significantly. I blame COVID-19 for my dad's significant decline as getting out into the world is vital for his psychological, social, and physical health. 

When Peter and I arrived in LA in the beginning of June, we began to take my parents out to lunch. We only go to three restaurants we know and trust. Don't you know it, as my dad started going out to eat, he began eating and is now regaining weight! We are careful and are being safe. Yet today, Governor Newsom once again CLOSED inside dining of all restaurants in LA County! Honestly!???? I think our leaders want to kill us, because if COVID doesn't do it, then the psychosocial impact of lock down and quarantine definitely will. 

No comments: