Tuesday, May 22, 2012

Tuesday, May 22, 2012 -- Mattie died 141 weeks ago today.

Tonight's picture was taken in June of 2008. A month before Mattie was diagnosed with cancer. To me Mattie looks like the picture of perfect health, and there was absolutely NO sign that he was ill or any of his bones were bothering him. In front of Mattie in this photo was a science experiment in the making. Mattie loved the whole scientific hands on process, and it wasn't unusual for us to have all sorts of projects occurring in our home simultaneously.





Quote of the day: The power of God is capable of finding hope where hope no longer exists, and a way where the way is impossible. ~ St. Gregory of Nyssa

As I continue to highlight the Foundation's third annual Walk, I would like to share the greeting I delivered to our attendees. I have received positive feedback from attendees about my honesty, sincerity, and ability to capture each person's attention in the audience. In fact, after the Walk, my family and Peter's family went out to dinner. At the restaurant, we actually sat near several Walk attendees (they had their Mattie Miracle shirts on!!). Before they left the restaurant, they made a point to come over to me, to give me a hug and even kiss me. They said our story moved them and they plan on attending our Walk next year and supporting our cause. Hearing that we touched the hearts and minds of complete strangers, allowed me to see that it was a very successful event.


Vicki's May 20th Greeting

When you think of the theme Love of Family, the first thing that probably comes to mind is the traditional family unit..... mothers, fathers, siblings, grandparents, aunts, uncles, and cousins. Certainly as the Eichner family has illustrated to us today, the biological family unit is a crucial component to surviving and thriving with childhood cancer. However, for many of us battling childhood cancer, we learn that family becomes more broadly defined. In fact, people who are not even related to you at all, suddenly become vital parts of your life and probably will always REMAIN vital parts of your life because of the life altering things you experienced together. For Peter and I, our family grew in 2008 when our only child Mattie was diagnosed with Osteosarcoma, a form of bone cancer. Suddenly we had a team of doctors, nurses, a child life specialist, and social support staff who walked every month by month, day by day, hour by hour, and sometimes minute by minute with us. These people saw us living under the worst of conditions and also helped us face life's greatest tragedy. Many of these special individuals are here at the walk with us today, and remain committed parts of our family. These are women from Georgetown University Hospital who came into our lives because of their profession, but remain in our lives because of our emotional bonds and connections. They are with us in our grief and continue to walk this journey with us. If this isn't the definition of family, I am not sure what is.

It was also during Mattie's battle that we witnessed our communities coming together to form what we called, Team Mattie. Team Mattie was comprised of faculty and families at Resurrection Children's Center (Mattie's preschool), faculty, staff, and families at the St. Stephen's and St. Agnes School, Peter's place of employment, Voxiva, and his former place of employment, Arthur Andersen, and my place of employment, The George Washington University. There was nothing too great for Team Mattie to accomplish. From meals planned and delivered to us every day for 15 months straight, to toy and video tape deliveries, and play dates for Mattie on demand. This group also planned in 2009, the Mattie March. Which was a family fun day, not unlike today, in which Mattie was the guest of honor. The Foundation is continuing the tradition of an annual walk that was established for us by our Team Mattie family. The point of me telling you all of this is that Mattie has been gone from our lives for two and a half years, and yet these families he created for us remain in our lives today.

Surviving childhood cancer takes much more than chemotherapy, radiation, and surgeries. In a way the treatment is such a small component of the battle, and the true test of survival, if you ask any parent, is the day to day living, working through the fears, isolation, loneliness, hopelessness, loss, and sadness. Solutions to these real psychological and socio-emotional problems are not found in medicine, instead they can only be found through human connections or in other words.... within the LOVE OF FAMILY. It is through our experiences, that the mission of the Mattie Miracle Cancer Foundation was born and continues to evolve. Mattie Miracle is dedicated to advocating, educating, and enhancing the psychological and emotional support and services offered to children and their families battling childhood cancer.

This leads me to our 2011-2012 Foundation accomplishments. Mattie Miracle has had an extremely busy and productive year. It is thanks to your contributions and support we have accomplished the following:

1. We have helped to fund and keep stocked a free Snack Cart for children and their families who are inpatient at Georgetown University Hospital.

2. Three successful drives, generating hundreds of items such as Kcups, bandaids, crayons, construction paper, kid video tapes/DVDs, and basically a year's supply of chocolate for Georgetown University Hospital.

3. We served as a community based learning project for two Georgetown University Business School classes this year. We exposed young minds to the facts and psychological consequences of childhood cancer, and had these students tour the pediatric in-patient units and meet many of the children. The classes had the opportunity to use their learned skills to help our non-profit continue to grow and develop.

4. Mattie Miracle worked with Girl Scout Troop 3989, and as a result the girls built and delivered 100 Build-a-Bear teddy bears, distributed valentine's cards, and hosted a successful Easter Egg Hunt for in-patient children and their siblings at Georgetown University Hospital.

5. Mattie Miracle was instrumental in generating and contributing to three forms of legislation: HR 262, HR 3015, S1613, all focused on the psychosocial needs and concerns associated with childhood cancer.

6. Mattie Miracle hosted the first ever Psychosocial Symposium on Capitol Hill. There were 85 participants, from 12 different states in attendance, and 4 congressional members greeted our participants and also received a Mattie Miracle award.

7. Established a Nurse's support group at Georgetown University Hospital. Nurses serve on the front line of managing patients' needs, concerns, and fears. Therefore, providing nurses with an outlet to express their feelings and challenges, and discuss positive coping strategies to effectively work with children and their families will only enhance the patient/family experience.

8. In 2011, we endowed the Mattie Miracle Child Life Program Fund at Georgetown University Hospital. This helps to pay the salary of Jess Abrams, a Child Life Specialist dedicated to working with children on scan and procedure days. Days which are very scary and stressful for children and families. With Jess' presence, support, and psycho-educational techniques, 20% of children are now able to undergo procedures without sedation. The funds generated from the Foundation's 2012 Walk, will pay Jess' salary for another year.  

As I come to a conclusion, I wanted to say that being on this track is special to me. Maybe it is special, because only three years ago Mattie was standing right here besides me as I was talking to all of you. In so many ways, this is hallowed ground.

I realize we all come here today for various reasons. However, it is my hope that as you walk around the track today, you check out the posters you will be passing.

Linda Kim, Mattie's child life specialist, and I asked 12 families at Georgetown Hospital to create a poster that displays what love of family looks like to them as they battle childhood cancer.

So today we are celebrating families and how the power and connections of these bonds can help us survive one of life's greatest challenges, childhood cancer.