Tonight's picture was taken in April of 2004, on Mattie's second birthday. One of the gifts Mattie received that year was a plastic toy fire station. Included with the toy were all the sounds you would associate with a fire station. Mattie loved this toy set and it was one of his favorites for the longest time. Birthday parties were not easy for Mattie early on in life. The noise level and commotion bothered him. He eventually grew out of that, but this picture was taken before the party began. Mattie was happy, smiling, and being two.
Quote of the day: It's so curious: one can resist tears and 'behave' very well in the hardest hours of grief. But then someone makes you a friendly sign behind a window, or one notices that a flower that was in bud only yesterday has suddenly blossomed, or a letter slips from a drawer... and everything collapses. ~ Sidonie Gabrielle Colette
Peter and I attended the inaugural People Against Childhood Cancer (PAC2) workshop today. PAC2
represents the advocacy community and its mission is to raise awareness of childhood cancer. They strive to take ACTION as "One Voice United Against Childhood Cancer!" PAC2 was founded by Bob Piniewski, in honor of his 14 year old son, AJ, who died in January of 2008. To learn more about PAC2, please visit:
http://curechildhoodcancer.ning.com/
What I immediately learned from attending this meeting is that there are hundreds (maybe thousands) of foundations in this Country dedicated to addressing pediatric cancer. When I say addressing, I mean foundations are either raising money to support research, they are enhancing awareness and education, and/or are tangibly meeting the support needs of children and their families. Many foundations were created by family members in the memory of a child who lost his/her cancer battle. However, what is VERY evident to me is that this community is quite fragmented and not unified. The goal of PAC2's workshop today was to pull us together, brainstorm our needs, and plan a course for a unified direction.
As we all know, there is strength in numbers. As I was listening to all the groups in attendance discussing their issues, it became very evident to me that a professional association designed to meet the marketing, media, lobbying, professional development, and strategy building needs of our pediatric cancer community is crucial. Perhaps I have lived in the world of academia too long, but I know the value of being part of a professional association. It gives you a voice, access to trained professionals to guide your growth and development, and it also serves a vital role interfacing with the public. Professional associations promote public awareness and lobby on one's behalf with the community, and to me this is the ultimate way to build awareness for our pediatric cancer cause. It is very challenging for foundations to build out a platform for pediatric cancer awareness and advocacy, when we are in the trenches each and every day to keep our own organizations growing and thriving.
An immediate observation I made today, while looking around a room of 50 people, was that moms outweighed dads in the room. You could count the number of men in the room on two hands. This is not an unusual occurrence, since I observed this gender difference within the hospital too. Moms basically take point for their children's cancer care. However, for Peter and I, this wasn't the case. Though Peter HAD to work during the day (since we needed an income and HEALTH INSURANCE!!!), he was always present. He stayed at the hospital every night and slept (if that is what you can call it living in a PICU) on a slab of a cot, helped take care of Mattie throughout the night, and then went to work the next day. How he managed that is beyond me. Peter was a dedicated dad when Mattie was well and when Mattie was battling cancer. So I realize my experience may have been different from other families within the room today. Peter rarely gets recognized for his role, or let me put it this way, he doesn't get as much feedback as I do, so therefore I felt my observations were WORTH mentioning.
To give you an idea for the NUMEROUS pediatric cancer groups out there, I have listed the ones in attendance today. Clearly you can see that this is a very emotionally laden and passionate issue, which is why SO many parents create organizations and foundations to address the cause.
1) 46 Mommas Shave for the Brave
2) Aimee's Army
3) Alex's Lemonade Stand Foundation
4) American Childhood Cancer Organization
5) Andrew McDonough B+ Foundation
6) Arms Wide Open Childhood Cancer Foundation
7) Band of Parents
8) Bear Necessities Pediatric Cancer Foundation
9) Caleb's Crusade
10) Childhood Cancer Advocates
11) Children's Brain Tumor Foundation
12) Children's Cause for Cancer Advocacy
13) Children's Neuroblastoma Cancer Foundation
14) Children's Oncology Group
15) Cody's Crew
16) ConKerr Cancer
17) Cookies for Kids Cancer
18) CureSearch for Children's Cancer
19) Friends of Will
20) Gold Rush Cure
21) Grace Oughton Cancer Foundation
22) Keaton Raphael Memorial
23) Kids Kicking Childhood Cancer
24) Kids v Cancer
25) kidsStrong
26) Layla Grace Foundation
27) Mattie Miracle Cancer Foundation
28) Max's Ring of Fire
29) PLGA Foundation
30) Rally Foundation for Childhood Cancer Research
31) Rock Against Cancer
32) Solving Kids Cancer
33) St. Baldrick's Foundation
34) The Henry Tucker Foundation
35) The Lily Fund
36) The Pablove Foundation
For three days now (between the CureSearch events and PAC2), I have been focused on pediatric cancer issues and telling Mattie's story. Throughout the process, which has been very draining, I met some wonderful people, who started some fabulous organizations. I made a "new friend" in the process. I met Melanie yesterday while advocating on the Hill, and we also sat next to each other today. Melanie Goldish, in October of 2002, founded a non-profit called SuperSibs. The mission of SuperSibs is to "Ensure that siblings of children with cancer are honored, supported, and recognized so they may face the future with strength, courage, and hope." Melanie and I instantly identified with each other, since we both speak the same psychosocial language. Before Peter and I left the event today, we posed for a picture with Melanie. The backdrop behind us is art work that siblings of cancer patients created. The art was an expression of their feelings, fears, and hopes. As a person who loves art and self expression, I greatly appreciated this resource and outlet that Melanie and her organization provides siblings. For more information about SuperSibs, please visit: http://www.supersibs.org/index.html
Though today's event went until 5pm, Peter had to get back to work, and I had to report into the DC Licensure Board for a special meeting. So we left early. However, before we left, Melanie helped to organize an entire group photo! I look forward to reconnecting with several of the wonderful people I met over the last three days, and hopefully sharing our common mission with one another.
After my licensure board meeting, I headed to visit Mary (Ann's mom). As soon as Mary saw me she said, "there is my old faithful." Mary knows when Ann goes out of town, I try to step in and visit her. I don't replace Ann, but I am a good distraction. Having spent so much time with Mary over the past two years, I have gotten to know her friends and family. Especially when they call her on the telephone. Many of her callers now speak to me as well! As many of you know, Mary also has a new roommate at her assisted living facility. Mary's roommate is in her 90s and is as sharp as a tack. She is blind however, but recognizes my voice. She knows me by name and we really enjoy chatting with each other.
When I got home tonight, Peter and I sat outside on the deck. It was in the 70s today in Washington, DC and felt like spring. All our bulbs are blooming, and things seem to be coming to life. A sight we REALLY need to see. I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy wrote, "You not only talk the talk, YOU WALK THE WALK in all phases of your campaign to honor Mattie and assist any family dealing with this dreaded disease. I have told you often how proud I am to have learned about your family and call you my friends. I do not use this label frivolously; to me a friend is one whom I can be myself without reserve, and give to openly and when needed, generously. I am amazed by all that you have endured and had to learn to advocate, not only for Mattie, for anyone who needs a "Helping Hand." Thank you for your remarkable endurance and stamina in making a difference for humanity. I was blown away by your writings of the last few days. You took in a lot and learned a lot. As always, you were prepared and met with as many legislative aides as possible. I know that positive results for increased funding will come about in the future. It has to with both of you in this arena. With love always and in all ways. P.S. Your comments about Mattie and being a kid in spite of Cancer was very special. I see how reading Keaton's words would cause you to pause and think of all the months Mattie endured the changes to his body. This shows how play is a child's work. It never took away his indomitable spirit. Thanks Mattie for coming into each of our lives and making such a splash!"
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