MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 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

November 19, 2020

Thursday, November 19, 2020

Thursday, November 19, 2020

Tonight's picture was taken on November 12, 2008. It had to be around 5am, and we were in the pre-op area waiting for Mattie to be taken back for his second limb salvaging surgery. That was quite the day! Imagine such a little body undergoing 12 hour surgery. In any case, we were all stressed out and anxious that morning, yet we tried the best that we could to keep Mattie calm, and to reassure him we were in this together. 


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

  • number of people diagnosed with the virus: 11,698,661
  • number of people who died from the virus: 252,419




Look who has taken over my side of the bed!!! Sunny and Indie!







In case Peter is lonely, Sunny is on the job. 









My dad had physical therapy today. One of the exercises Jon did with my dad, was walking with a cane up their street. If you look closer, you will notice 3 pound weighs around my dad's ankles. Jon is doing this to help my dad build up muscle. It took 10 minutes for my dad to walk up the street and 10 more minutes to walk back down. My dad had an entourage with him, as my mom, me, and Claudia (his caregiver) were behind him. We had a wheelchair in tow, just in case my dad did not have the energy to make it back. 






Before I came to LA, we purchased an aeromattress for my mom. I set it up in their guest room yesterday. While I am here, I want my mom to stay in the guest room, so that she can sleep without worrying about getting up with my dad and can sleep later in the morning. I am here and can manage caregivers and other issues that arise in the morning. My mom looks more rested this morning. So I do think two weeks of getting sleep will do a world of wonders for her. 


Meanwhile, I met my dad's wound care specialist today. Wound specialists are health care professionals who have been trained in the care and treatment of all types of wounds, acute and chronic. Among the most commonly treated wounds are those sustained from an acute injury, surgical wounds, diabetic wounds and pressure sores. This is the third specialist assigned to my dad. We lost his first two because of patient demand and timing did not work out for us. So we were assigned Ken (Ken is NOT his real name, I won't use his real name for the blog).

In May, my dad developed a pressure sore on the lower part of his spine. We were told by the first wound care specialist that my dad got this sore from being sedentary during COVID and being malnourished (as my dad refused to eat while in lock down at home). Though my parents have been working with Ken for a couple of weeks, it was my first introduction to him today! To cut to the chase, it was NOT a good meeting and while he was working with my dad, I picked up my cell phone and called the in-home health care agency. On the spot I fired the wound care specialist. I demanded a replacement effective immediately. He was that bad! I did not need anymore time to assess him, his personality, or his poor skills. Turns out that my mom hasn't liked working with this specialist, and she said his behavior today was typical of how his overall delivery of care.

When incensed, I write. I wrote an email to the wound care company, because I felt their management needed to hear directly from the patient's family! Below is my message, and it is my hope you can understand why Ken's treatment was not satisfactory!


MY LETTER:

My dad is a client of T. Home Care. He has been dealing with a wound on his lower spine since May. Recently, my dad was assigned to work with Ken, a wound care specialist from your company. I live out of town, so today was the first time I met Ken personally. I introduced myself to Ken and I could tell right away this was not going to be a good visit. Given our experience with Ken, not just today, but from feedback I received from my mom, I called T. Home Care and asked that Ken NOT return. I have asked for my dad to be reassigned a new specialist immediately. 


Here are some of our experiences today that caused the decision to request a new wound care specialist:

  1. When Ken arrived, I introduced myself to him, as Mauro Sardi's daughter. He did not say hello or make any effort to communicate with me. 
  2. Ken also made no effort to greet my mom, my dad's full-time caregiver. It was clear that Ken doesn't value family input and doesn't consider us part of the treatment team. Which is a BIG mistake, as family caregivers know the patient better than anyone else. 
  3. After I greeted Ken, he turned his back to me, and instead started talking to my dad's professional caregiver. Ken apparently lost a blue bag of his and wanted to know if he left it at my parent's house. Since our caregiver doesn't live in my parent's home, it would have made more sense to inquire about the bag from my mom or me. 
  4. The bigger issue arose when I started asking Ken about my dad's back wound. He wasn't forth coming with any responses.
  5. When I saw the wound for myself (after Ken removed the bandage), I was stunned to see NO progress in healing. I last saw it in person in August, but my dad's caregivers send me photos weekly. Under Ken's care, I feel that my dad has made little to no progress. In fact, the wound looks worse. When I expressed my feelings with Ken, he basically said I was wrong and that I am not around enough to make this determination. Which is very insulting, given the efforts I do make to ensure my dad is getting the best quality of care possible. 

I appreciate the opportunity to share this feedback with you and I am telling you this because I do not want other patients and families to experience with Ken what we did today. Much thanks, Victoria

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