Tonight's picture was taken in June of 2009 at the Lombardi Clinic at Georgetown University Hospital. Next to Mattie is Maya! Maya was the only same aged buddy he had at the Hospital. All the other friends Mattie had were teenagers or young adults. I am not sure why this was the case, but I do think that Maya has a special spark about her and she most definitely could hold her own with Mattie. She is intelligent, very articulate, and in tune with feelings. When Maya and Mattie were in clinic, you could always be assured that the creativity meter would be off the charts. In this picture you can see that they crafted a planet out of a box. They created a whole scene about outer space creatures and Mattie and Maya were in charge of trying to save this particular silvery planet! I not only have pictures of this but I also videotaped these plays. Plays which at times turned into musicals! The videos are priceless! At the event at the Hospital today, I bumped into Maya and her mom. Maya gave me a big hug, and we got to chat for a few minutes! Seeing Maya today reminded me of the fun she and Mattie had together, under the worst of circumstances.
Poem of the day: Anniversary by Charlie Brown
Anniversaries should be happy
Perhaps even filled with laughter
Full of joyful memories
And happy ever afters.
But this anniversary is a sad one
For you are here no longer.
For me to greet this day without tears
Would require someone much stronger.
I've finally come up with a plan
For how to recognize this day
By offering all who knew you
A chance to have a say.
I'm hoping for some stories
And some pictures too,
That show and tell me things
I didn't know about you.
As today is September 1, Peter and I want to make sure our readers know that September is Childhood Cancer Awareness Month. In fact, on the radio today I heard a listing of all the causes September is known for, like Coupon Awareness month OF ALL THINGS! However, in this entire list I heard, there was NO mention to the very important cause of pediatric cancer awareness. I realize I can not change or educate the world over night, but I certainly can make sure my readers know the importance of September. The purpose of Childhood Cancer Awareness month is to bring attention to childhood cancer and survivorship issues nationally. Many organizations dedicated to childhood cancer awareness, research, and support, recognize September as Childhood Cancer Awareness Month and use the time as an opportunity to reach out and educate the public about the prevalence of childhood cancer, the need for greater funding for research and support services and the long-term effects faced by childhood cancer survivors. In 2008, September 13, was designated as “National Childhood Cancer Awareness Day” as a result of a Senate resolution introduced by U.S. Senators Wayne Allard (R-Colo.) and Hillary Rodham Clinton (D-NY).
As many of you know, Peter and I were invited to attend two events by Dr. Shad today. Dr. Shad is the director of the Georgetown University Hospital Pediatric Hem/Onc clinic, and was the doctor on call the week that Mattie died. Dr. Shad and her team at the Hospital just won a grant from Hyundai, the automotive company. Peter and I got a real education on Hyundai today and learned about their long standing commitment to fighting pediatric cancer, a commitment that started in 1998. Hyundai donates over $6 million dollars a year to support innovative pediatric cancer research. Here is some information about Hyundai and their HOPE ON WHEELS program!
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Hyundai.... Committed to Fighting Childhood Cancer
Since 1998 Hyundai and its dealers have been committed to supporting the fight against childhood cancer. What began in 1998 as a local initiative supported by New England-area Hyundai dealers to raise funds for the Jimmy Fund at Boston’s Dana-Farber Cancer Institute has evolved into Hyundai Hope on Wheels, an independent 501(c)(3) nonprofit organization which is supported nationwide by all of Hyundai’s more than 800 dealers and Hyundai Motor America. At the end of 2010, Hyundai Hope on Wheels will have donated more than $23 million to children’s hospitals nationwide to help kids fight cancer. Every time a new Hyundai vehicle is sold in the U.S., $5 is donated to Hope on Wheels.
The Hope on Wheels Tour is the united effort of Hyundai dealers across the country to raise awareness about childhood cancer and celebrate the lives of the courageous children battling the disease. In 2010, the Hope on Wheels Tour traveled to 42 children’s hospitals across the country and donated more than $2 million to support further training and research for doctors involved in childhood cancer research. Hyundai Hope on Wheels designates the medical professionals supported by these donations as Hyundai Scholars.
The 2010 Tour also hosted Handprint Ceremonies for childhood cancer patients, both past and present, at the 42 children’s hospitals receiving donations. The symbol of the Hope on Wheels Tour is a white Hyundai Santa Fe vehicle covered with colorful handprints representing childhood cancer patients from all over the country. The Handprint Ceremony celebrates the courage of childhood cancer patients by capturing their colorful handprints on the white Santa Fe; children attending the ceremony are asked to lend a hand and place their own handprints on the car to commemorate their battle with cancer.
Why handprints? Because there's nothing more personal than a handprint – and the goal of the Hope on Wheels Tour is to share the personal triumphs of each of these children with other childhood cancer patients and their families across the country. Whether it's completing a round of chemo, celebrating a beautiful new head of hair or receiving a clean bill of health, one childhood cancer patient’s milestone can be another's symbol of hope.
This year, Hyundai and its dealers are expanding their commitment to battling childhood cancer with the “Hyundai Gives Hope on Wheels” September program. During the month of September - Childhood Cancer Awareness Month - Hyundai Motor America and Hyundai dealers will raise national awareness about childhood cancer and donate $6.8 million to children’s hospitals and other non-profit organizations across the country.
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Peter and I went to the Hospital this afternoon for the grant awarding ceremony. Before the ceremony started, we had the opportunity to connect with three families we really love. We saw Brandon and his mom, Toni, Bridget and her mom, Cathy, and Maya and her mom, Adina. These are all special people to me, and though it is hard to know that Mattie did not survive this horrible disease, I am happy that these three wonderful individuals are holding their own and keeping hope and faith. For the first time today, however, I did not feel comfortable driving into the Hospital parking lot. It was like how I imagine a soldier feels when returning to the battle field. On each floor of the parking lot, I imagined Mattie, and our struggles parking, managing his wheelchair, and of course the host of emotions that came with Osteosarcoma and its treatment. I saw several of Mattie's doctors today, two of Mattie's nurses, and Mattie's social worker, Denise. Unlike others in my life, Denise could tell immediately that I wasn't myself and I was also sleep deprived. We talked about the one year anniversary quickly approaching as well.
Once the ceremony began, I could see that all the Hyundai executives in attendance were truly dedicated to the mission of helping children with cancer. Their passion caught my attention. During the presentation, one of the speakers equated caring for a child with cancer to being like the Greek god, Atlas. Atlas who was punished and sentenced to hold the weight of the world over his head. Something about this analogy just got to me, and made me cry, because caring for a child with cancer is daunting, overwhelming, and the needs are never ending (like you are holding the world on your shoulders). However, I am afraid to report that this weight doesn't lighten up once your child dies. Instead, I find I am holding the weight of cancer and the weight of death all at the same time, and this can be a very debilitating and ominous task.
At the ceremony, we met a delightful 12 year old named Brianna Commerford. Brianna is a Hodgkin's Lymphoma cancer survivor and is the 2010-2011 Hope On Wheels National Youth Ambassador. Brianna delivered a greeting in a very sweet and energetic manner, and despite all she has been through, she is passionate about helping and supporting others with cancer. We also had the opportunity to meet Brianna's parents and sisters. They were very generous with their time and we had a wonderful time sharing stories this evening.
We also learned that Hyundai is the first company to spend money to create a commercial on pediatric cancer. This commercial is going to air tomorrow during the NFL preseason game, and then will run throughout the month of September. If you would like to see the actual commercial clip, go to this web address: http://www.hyundaihopeonwheels.org/ and click on "News From the Tour."
In this picture, the Hyundai Southern Regional Director and Brianna are giving Dr. Shad the grant!
This evening, Peter and I were invited to a reception and dinner at the Willard Hotel. We had the opportunity to reconnect with Brianna and her family, and we got to take a picture with Brianna and her two sisters.
Left to right: Peter, Brianna, Kristi, Janelle, and Vicki
I will be heading to the press club in the morning to hear the official launch of their Childhood Cancer Awareness campaign. So stay tuned for more information.
The second message is from my friend, Carolyn. In an email exchange I had with Carolyn last night, I asked her where on earth she got to energy to take her children to the pool after a full day of work and other activities. Here is what Carolyn wrote, "I got the energy for the pool tonight from YOU!!! Sure, it would have been easy to come home, make dinner and then let the kids play with their friends, watch tv, get ready for bed - but it was 100 degrees today, the pool closes in only 2 weeks, and my kids will not be this age forever - and, thanks to you, I now live my life appreciating every second that I am given to enjoy my kids and have "quality" time with them. Thanks to your blog, your honesty, your compassion and your friendship. So when Ellie and Gavin asked if we could go for a swim tonight - there was no saying no. And, just look at the great benefits. I was able to cool down at the pool, I got to enjoy the smiles on my kids faces AND Gavin has been asleep for almost 30 minutes already:)"
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