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 5th 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!

February 2, 2012

Thursday, February 2, 2012

Thursday, February 2, 2012

Tonight's picture was taken in February of 2009. As you can see Mattie was in his PICU room, surrounded by all the items I brought with us on each visit. Mattie's room was always decorated with things, and this did not only help our morale, but it also gave medical personnel who entered Mattie's room an excuse to interact with him and ask him questions about his toys, art, and creations! Sitting on Mattie's bed is Katie. Katie was one of Mattie's amazing HEM/ONC nurses. Katie was used to Mattie's legs all over the place, and in many ways Mattie used his legs like arms. Katie had an infamous grey sweater. It wasn't featured in this picture but Mattie's left leg loved that sweater because the sweater had a belt. By the time Katie was finished with her exam of Mattie, he usually had untied her belt and  pulled it right off her sweater. In fact, one day, he kept the belt during the entire portion of her shift. He eventually gave her the belt back, but neither of us could look at Katie's sweater the same way after that day. That belt got the "Curious George" (the name given to Mattie's left leg) seal of approval!

Quote of the day: Thousands of candles can be lit from a single candle and the life of the candle will not be shortened. Happiness never decreases by being shared. ~ Buddha

In Mattie's case, he was an amazing candle, who did light the minds and hearts of thousands of people. But unlike Buddha's quote, Mattie's life and light were cut too short. Yet I try to see that Mattie's spirit and light remain in each one of us he touched, and with the friendships he made and nurtured for us. So perhaps if I think about the number of friends and people impacted by Mattie, I see that his candle wasn't shortened per se, but it has multiplied ten fold.

I had the good fortune of spending the day with my friend Junko. She and I are both not good at taking breaks or doing nice things for ourselves. So getting together gives us the perfect motivation to care for ourselves. Today's journey was to a spa for a massage and lunch. We spent six hours together in what we call our oasis in the city. Our time together always goes quickly and I joke with her often about how we need to pay money to remove ourselves from phones, computers, and the stresses of life. I imagine this is a familiar problem for SO many of us these days.

While talking about the Foundation today, we chatted about the use of interns to help us manage the administrative tasks of the Foundation. Ironically the MBA students recommended the same thing to me. But the catch is I am very protective of the Foundation, its image, and what documents, materials, and communications emanate from us. It was through this discussion that I realized my level of micromanagement is due to the simple fact that the Foundation is my baby. I take what we do personally and it is hard to give up control to others. I also feel that until we become a strongly established organization, our role in the direction and tasks of the Foundation are crucial.

I continue to plug away on the plans for the psychosocial symposium, and have various meetings next week to finalize things. However, I am happy to report as of today I have secured 8 continuing education contact hours for licensed professional counselors, social workers, and psychologists to attend the symposium. I feel very positive about this and have been overwhelmed by the responses I am getting so far from those who have seen our agenda for the day.

On Friday, I head to Georgetown University Hospital to present to Girl Scout Troop 3989 information about Mattie and the Mattie Miracle Cancer Foundation, and then help them distribute the 101 Build A Bears that they created for the children. This is my first time presenting information about Mattie and the Foundation to this age group, so stay tuned for an update and pictures tomorrow!

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