Tonight's picture was taken at Butler's Orchard in Germantown, MD. Mattie and I loved this farm during the fall season, because you can take a hayride out to a pumpkin patch and pick a pumpkin right off the vine. This picture was taken when Mattie was 5 years old. It happens to be one of my favorite pictures. I love it because it captures Mattie's excitement over picking out just the right pumpkin. Mattie and I could spend 15 or 20 minutes easily on such a pumpkin quest! When I look at this photo, and particularly look at Mattie's hands and arms, it is hard to believe this was the same child after being transformed by chemotherapy and surgery. After his cancer treatment he was a shell of his former self, he was fragile, extremely thin, and the color of his skin looked sallow and pale.
Poem of the day: Mattie's Walk by Charlie Brown
Were you with us?
Are you proud?
Your friends were here
We had quite a crowd.
Your artwork
It was on display
With your photos
It was quite a day!
I heard laughter
And there was magic
We shared your story
And the end, so tragic.
Sean Swarner came
And he shared
About his battle
And those who cared
And then before the day
Was done
We all joined in
To have some fun
We raised money
And awarness too
Of childhood cancer
And the loss of you
We made the news
So more people know
And the foundation
Continues to grow
You would have loved it
Your friends had fun
The only thing missing
Was you, my son.
Over the course of this week, I will be posting links and photos to the blog, so that you can see some memorable moments captured at this year's Walk. The picture below was taken about 30 minutes prior to the Walk beginning. Ann, our Walk Chair, convened the Team Lead volunteers together for last minute instructions and directions. Our Team photographer, Jeff Gehrs, captured the group and the excitement present before the activities began.
Second row: Debbie, Sue, Ellen, and Christine, Leslie, and Leslie's husband
Third row: Katherine, Bernie, Patty, Carolyn, Peter, Bob, Junko, Tad, Mary, and Tamra
Today was another big day for the Foundation. The Mattie Miracle Cancer Foundation brought Sean Swarner to the Lombardi Pediatric Cancer Center at Georgetown University Hospital. Two TV networks were present, Fox 5 and WUSA 9. Fox 5 covered yesterday's Walk as well as today's event at the hospital. Fox 5 has been absolutely wonderful to work with, and I feel they truly value the work we are trying to accomplish, and this came across in their actions to be present for interviews both yesterday and today. Peter and I are very thankful to Marianne Worley, the director of public relations at Georgetown University Hospital for contacting these stations on our behalf. We feel quite lucky to have this connection with Marianne.
When we arrived at the Hospital, we set up our banner, photos of Mattie, and posters about pediatric cancer facts. Soon there after, our friend Alison arrived. Alison is well versed in the area of media communications and I felt very happy and less stressed out that she was there. Alison is calming and unassuming, however, I have no doubt if things weren't moving in the right direction for us or the Foundation, she most definitely would have stepped in. It is wonderful to have a friend like this behind us!
At the Lombardi Pediatric Cancer Center, Dr. Shad (the director of the Center) welcomed all attendees, and then Peter and I gave a greeting. Sean Swarner spoke to the children and their families for about 15 minutes. Little ones were sitting in tiny chairs right at Sean's feet, and they were glued to his stories and his messages of hope. One little boy later stated that if Sean could survive cancer twice, so could he! This little boy's name was Ryan and he is only 6 years old! Ryan is a RED SOX fan, and immediately identified with Peter. Ironically I have come in contact with the organization that Ryan's mom and her friends started called, "Just Tryan it." I was introduced to it by the "Magic Man," (Bob Weiman). If you want to learn more about Ryan, and this non-profit Foundation's upcoming triathlon, please visit http://www.justtryanit.com/.
Peter and I felt very supported today by all the Hospital staff and nurses. Denise, Mattie's social worker, was dressed in a beautiful red dress to capture Mattie's spirit today. She knew red was Mattie's favorite color. After Sean's talk, I had the pleasure of interacting with many of the children and their parents. I spoke to many moms, and many of them were in shock over the fact that Peter and I lost Mattie around 8 months ago, and here we were in clinic trying to help others. I appreciated their acknowledgement, and one mom was so overwhelmed by our story, that she hugged me for minutes. It is hugs like that, when I usually land up crying. I cry because I can feel that the person holding onto me gets my pain. I connected with that mom today, and so many others.
As Denise accurately observed, I couldn't help but take my camera out at the Hospital. It is almost by instinct. So I snapped a few pictures.
Left: My mom, Karen, Toni (Brandon's mom), and Brandon. Brandon and Toni came purposefully to the Hospital today to support us! We so appreciate their support, and Mattie would be so happy his "best" buddy was there. Toni also brought me a flower pot with forget me not seeds that were blooming. Toni planted Mattie's butterflies from his celebration of life ceremony, and wanted me to have them, since none of mine were sprouting out!
Left: You can see the little cutie in this picture is holding a Foundation gift bag. Her name is Fatou. Fatou and Mattie were in the PICU for treatment during the same time. Some of my readers may recall me mentioning Fatou's mom, and her struggles in the blog. Fatou and her mom were in the hospital for about five months straight and Fatou was on life support. It is miraculous that she is here today. However, Fatou's mom never forgot the help and friendship I offered her while we were both living in the PICU. So she purposefully came to the event today because she wanted to see me. There is something to be said about being bound together by cancer.
Right: After Sean's presentation some of the children went back to playing. Pictured here are Ryan (in red), his brother, Sean, and Tracy (the director of the art therapy program at the Hospital).
Dr. Shad graciously offered everyone a beautiful buffet lunch during the event. After which, we packed up and moved the event up to the fifth floor of the hospital, which is where the three pediatric wards are. We took Sean around to the transplant unit, the PICU, and the HEM/ONC unit. We were quite a troop. Since it was Peter, myself, my parents, Karen, Alison pulling the little red wagon filled with Foundation gifts, and Mary (the head HEM/ONC social worker). Peter and I had the opportunity to see many wonderful nurses and doctors we had come to love over our 15 months at the hospital. I can't quite explain it, but going to Georgetown is like going home. One particular story I wanted to share is we learned about a boy in the HEM/ONC unit today who was having a rough day. It was his 17th birthday, and he did not want to celebrate it, nor did he want to talk to anyone. However, after some coaxing by Mary (the social worker) and Dr. Gonzales, he allowed Sean in. Sean spent about 20 minutes with him. When the door opened back up, I could see this teenager smiling! Because I believe it is important to respect a patient's privacy, I did not take a picture, but imagine the feeling of seeing this beautiful smile! A smile on a face that was so upset only 20 minutes ago. Peter and I felt like we accomplished a lot today by bringing Sean to the hospital and delivering 35 gift bags to children!
Below you will find some links to Fox 5's interviews. I appreciate one of my former students, Marie, e-mailing me to let me know she saw us and the Foundation on TV! It is such a nice way to document the beginning of Mattie's Foundation!
Cancer Survivor Sean Swarner Climbs Highest Mountains
http://www.myfoxdc.com/dpp/health/cancer-survivor-sean-swarner-climbs-highest-mountains-052410
Mattie Miracle Cancer Foundation
http://www.myfoxdc.com/dpp/news/web_links/mattie-miracle-cancer-foundation-mmcf
For those of you who were unable to attend the walk, and would like to know what I said in my greeting to the attendees, I copied it below. I hope you find it as moving as it was intended to be.
___________________________________________________
Vicki's Greeting at the Mattie Miracle Cancer Foundation 2010 Walk
I am Mattie's mom. A title and role I loved and never took lightly. Mattie was my seven year old son who fought a courageous battle with multifocal Osteosarcoma. It is ironic that last May, I was standing almost in the same spot on this beautiful campus, delivering a message to our loving community. Last year, sitting to my left, while I was giving my greeting I could see Mattie out of the corner of my eye. He was watching the crowd and soaked in all the attention, support, and love you all bestowed on him. Naturally standing in front of you this year is a bit harder and much more bittersweet. It is sweet because Peter and I are charged with the calling to help other children and their families battling cancer. However, it is also very bitter because, in our own battle with cancer we lost our precious and only child.
Before I continue, I want to acknowledge our special guests today. Seated in the reserved section with our families are Brandon Johnson, Jocelyn Sweet, and Maya Goldberg. These were three very close buddies of Mattie's from the Georgetown Pediatric Lombardi Cancer center. In addition, several of Mattie's outstanding nurses are also there, along with Dr. Shad, the director of the Lombardi Cancer center, and Dr. Bob Henshaw, Mattie's incredible surgeon. We are honored to have these individuals with us because through Mattie's cancer, they became and will always be a part of our family.
As Mattie's mom, I know there must be a reason for Mattie developing cancer and dying. It is a pain that I hope none of you will ever experience. But when I look around today, I am reminded what Mattie was able to create in seven short years............ Mattie lived to create just this! A community who can come together and rally around pediatric cancer. Mattie made pediatric cancer real for so many of us. It is no longer an issue we only see covered on television. Through this amazing unity you helped our family in extraordinary ways, and your support and strength is now being channeled through the Foundation to potentially help countless children and families with cancer.
As many of you know, Peter created Mattie's blog in July of 2008. For almost two years now, I have posted a blog entry each and every night. I have never missed a posting regardless of my circumstances. The blog evolved over time, from a mass communication platform to convey Mattie's diagnosis and treatment, to an emotional account of our family's internal struggles with cancer and the death of our child. On any given day, 300 people read the blog. You may read it because you have an emotional connection with us or because you have or know someone else who has a child with cancer. I imagine what keeps people coming back to our story is the sheer need to understand the unthinkable..... which is how do you survive and cope with cancer and the death of a child? Our children are supposed to outlive us, to be happy, and healthy. But what happens if one day a doctor sits you down and tells you your child has cancer? Better yet take it one step further and imagine hearing that there is nothing else left to do, there are no more treatment options available for your child because the cancer has spread everywhere? How do you take in this kind of news?
As human beings we have a very strong desire to understand what makes us resilient, and I know many of you ask yourselves daily, what would I do if I were in Vicki and Peter's shoes?! I do believe that Mattie touched the lives of all of you and by sharing his story, I think it has had a profound impact on others. It has caused you to grapple with life's fragility and uncertainty, it causes you to re-evaluate your priorities, to hug your children more, and to simply spend more time truly being engaged with your children. Cancer simply stated, is a wakeup call!
Mattie and our community have been our greatest teachers. Through Mattie's cancer journey, we learned what types of support families need in order to cope and survive the endless treatment process. Peter and I were fortunate to have you to turn to. I have quite a good memory for emotional content, and I assure you, I will never forgot each of the hand written letters, e-mails, meals, or toys you gave to us. Some days these tokens of kindness were the only things that sustained our hope. However, I observed in the hospital that not all families are as fortunate as us to be the recipients of such love and community support. Through the Mattie Miracle Cancer Foundation, we are committed to providing other children and their families with the opportunity to experience this type of support and assistance.
Your presence today makes a difference. As a community we were not able to save my Mattie, but with your continued support, I have no doubt we will be able to make a difference in the lives of other children touched by cancer. I have learned the hard way that fighting cancer is not only about the outcome or the end result. It must be about the humane and compassionate treatment and support that is received from the time of diagnosis, through treatment, and beyond. Thank you for having the faith and the confidence in the Mattie Miracle Cancer Foundation to follow our passion and vision to help children with cancer and by doing so ultimately keeping Mattie's memory alive.
____________________________________________________
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you for the wonderful pictures and for sharing with those of us who could not be there yesterday. I know I was praying for the sun to show up yesterday afternoon and I was so happy and relieved when I saw an end to the rain. I am sure that along with the hopes of all who made the event happen, Mattie was there making sure the sun shone down on you all. So many thanks to all who put in the countless hours to make this event such a success, from all the walk volunteers to the Georgetown staff who were able to come and be a part of things. And special thanks to Sean whose inspiring words reached children and adults alike. Hopefully, this will be a touchstone on the road to solving the tragedy of osteosarcoma. I am so glad the event was a wonderful success and that you can build on that for the future of the foundation's work. Remember, after something tremendous like this event, there is often a natural letdown. Give yourself time and space to recover your energy. I hold you gently in my thoughts."
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