Mattie Miracle 9th Annual Walk & Family Festival -- Raised over $97,000

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: 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

Random Shots of Mattie, Family and Friends

January 30, 2016

Saturday, January 30, 2016

Saturday, January 30, 2016

Tonight's picture was taken on February 4, 2009. Anna, Mattie's physical therapist, came up to the pediatric unit to give him physical therapy. Mattie was truly disgusted with our request for him to do this, so in order to inspire him, Anna and I decided to turn the shoe on the other foot. We said that Mattie could make us exercise, but then we wanted him to join in. He seemed to like that idea a lot. Anna and I got down on the floor and did a physical therapy twister. Mattie was calling the shots and LOVED it! Anna and I practically did just about anything to get Mattie to participate in physical therapy, because at the time we thought after treatment Mattie would have the chance to rehabilitate and regain his strength. 

Quote of the day: The whole world can become the enemy when you lose what you love.Kristina McMorris

Peter and I were invited to an open house today at Sinai Hospital in Baltimore.
Dr. Aziza Shad, who once ran the pediatric HEM/ONC program at Georgetown University Hospital is now the Chief of Pediatrics at Sinai. How do we know Aziza? After all she wasn't Mattie's oncologist. It turns out that Aziza is the doctor who assisted us when Mattie was dying. She was with us on this journey until the end and made the tough but RIGHT call to give Mattie propofol to induce a coma. Basically to assist in his horrific dying process. These are moments and care you never forget. Aziza was also the person who encouraged me to have Mattie die in the hospital rather than at home. Ultimately Mattie is the one who made the decision and HE CHOSE the hospital. But Aziza was 100% correct, we needed a hospital not just for treatment but for end of life care. There is no way any of us or hospice could have handled Mattie at the end of his life. We needed extreme measures and a trained hospital staff on hand. Of course this was not just any staff, these were professional we had come to know, trust, and respect over the course of 14 months. 

Aziza held an open house today for many of her Georgetown supporters at Sinai Hospital. This open house was lovely. It wasn't staged or programmed but truly warm and inviting, which enabled us all to interact with one another and share ideas about what we could bring to Sinai. Mind you, Peter and I knew most of the parents sitting around the table today, so it was like a mini reunion. 

One of the issues we surfaced at the gathering was the Psychosocial Standards of Care and how we can bring these standards to Sinai. What impressed us was the doctors and administrators were interested in our work and truly understood the importance of family center care, which includes psychosocial care for the patient and the family. I wasn't necessarily going to bring this up at the meeting, but literally Aziza asked me in a room full of people... "Vicki what are your thoughts?" Meaning did I have something to say. She did not do this with anyone else, so I greatly appreciated her vote of confidence and belief in what amazing work we just accomplished with getting the standards published in a top tier medical journal. 

We had the opportunity to have a tour of the outpatient clinic and inpatient pediatric unit at Sinai. This is a typical patient room. It was designed with the family in mind and the spaciousness, cleanliness, and brightness caught my attention immediately!

This was one of their family lounges on the pediatric inpatient unit. 

What I fell in love with was this space..... The child life playroom! It was so inviting, bright, and engaging. 

The hospital has 26 patient rooms and has 3 child life specialists, which is EXCELLENT!

After our tour, we got together with Aziza Shad (in the center in red) for a photo with all our Georgetown friends (families with children treated at Georgetown). 

You may look at my arms and think they look funny. But what you can't see is that my left hand is wrapped around my body holding Marilyn's hand (who was standing behind me). I met Marilyn very early on in Mattie's treatment process. She is a nurse by training, and her daughter is a cancer survivor. She came by one day on the pediatric floor to talk with me. She had tried other times, but I wouldn't engage in conversation. That one day, she got a hold of me, and I appreciated being connected with her. We have remained friends ever since. In fact, in 2011 her daughter (a cancer survivor and now an art therapist at a children's hospital in Chicago) and her were our guest speakers at our annual Walk. 

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