Wednesday, January 18, 2012

Wednesday, January 18, 2012

Tonight's picture was taken in January of 2009. It reflects one of my happy memories living in the PICU. Anna (Mattie's physical therapist) and I worked very hard by day at retraining Mattie to walk. Remember Mattie on November 12, 2008, had his right leg operated on, specifically he had his femur (the bone that extends from the hip to the knee) removed and replaced with a prosthetic. A leg operation would have been hard enough to recover from, but keep in mind that Mattie also had prosthetics in both his right and left arms and left wrist. That did not provide him with much upper body strength to use a walker. In fact, Anna tried a front moving walker, and Mattie hated it. He had a hard time moving the walker forward. So then Anna tried him on this reverse walker, and Mattie seemed to gravitate to it. In fact, Mattie began taking a few steps and as you can see, Anna raised her arms in victory. Though Mattie tried very hard and had a great support team helping him which was comprised of Anna, Linda (Mattie's Childlife Specialist), Meg (one of Mattie's Childlife Interns, who was his racing buddy), and Jenny and Jessie (Mattie's art therapists), Mattie never was able to walk independently after his surgery in November of 2008. So the victory you see in this picture was short lived and in many ways, it was devastating for us to not only have a child battling cancer, but also a child with significant disabilities. The combination was hard to manage at times, and naturally Mattie understood his limitations and this impacted his mental health in profound ways.


Quote of the day: Vision is the art of seeing the invisible. ~ Jonathan Swift

The Foundation has exciting news to announce! Today, our Mattie Miracle Face of Hope, Lauren Chelenza launched her new website: www.bowsforhope.com.   Lauren was diagnosed with Osteosarcoma about a week after Mattie, in August of 2008. However, we did not meet Lauren and her family through Georgetown University Hospital. That is because Lauren lives in Pennsylvania and was treated at a hospital in her state. So the question is how did we connect with Lauren? Lauren's aunt found Mattie's blog on the Internet and told her sister Carey (Lauren's mom) to read it pretty soon after Lauren was diagnosed. Carey then emailed me and the rest is history. Carey and I immediately related to each other, we had similar stories, had similar feelings about the experience, and since the medical treatment for cancer is basically standardized across the country, Mattie and Lauren were undergoing treatments about a week or so apart from each other. Though Mattie and Lauren NEVER met each other, they in a way had a camaraderie because they were fighting the same devastating disease at the same time. I am sure in many ways it is hard for Lauren to accept that Mattie died, because at her tender age of 13, I imagine it causes her to reflect on her own mortality.

Peter and I met Lauren and her family for the first time in December of 2009, at a Candlelighter's Christmas tree ribbon event in Washington, DC. Lauren has a brother whose name is Matthew and happens to be my Mattie's age. In fact, Matthew sent my Mattie gifts while he was battling cancer. Matthew and Mattie had similar tastes and Matthew's gifts always made Mattie laugh! Though Peter and I were traumatized at that Candlelighter's event, Lauren left an impression on us. As you can see from her picture she is a beautiful girl with a captivating smile. So bright, you wouldn't imagine that this face has experienced the horror of Osteosarcoma.

Lauren has taken her experience and uses it to bring awareness to her community. She began designing duct tape bows for a class assignment, and the next thing she knew she wasn't only generating funds but she was promoting a cause and spreading awareness of childhood cancer. Lauren to this date has generated thousands of dollars for Mattie Miracle, and I encourage you to visit her website where you can read HER own story. Lauren created her non-profit whose sole mission is to raise money for Mattie Miracle. She is passionate about this cause, she is energetic about it, and from my perspective she is a fine role model for teenage girls. She shows us all that with determination, a vision, and creativity anything is possible. Please visit Lauren's website and tell others about her great work.

Now I am switching gears to a totally different topic. The topic is Bald Barbie. Yes you read this correctly. A mom by the name of Rebecca Sypin contacted Mattel and asked the toy company to consider designing a bald version of Barbie. Rebecca's daughter is battling leukemia and she started a Facebook campaign which is gaining TREMENDOUS support. She feels that children with cancer and those with other diseases that cause hair loss would identify with this doll, but also the doll would bring public awareness to the crisis. Just an aside which I want to share with you...... if you ask most parents who have a child with cancer about their thoughts on the advocacy and support for breast cancer or even mention Susan G. Komen, you may be surprised by the reaction you get. Many parents will outright tell you.... I hate pink! I am sure that may sound shocking to you, but I believe this feeling is completely grounded in the frustration that childhood cancer is NOT promoted and in many cases it is swept under the rug by pharmaceutical companies and even big advocacy groups. In particular, I am singling out the American Cancer Society (ACS) since they blogged about bald Barbie and absolutely INCENSED the childhood cancer community. Which I will share with you below.

If you want to read about Rebecca's campaign, please click on this link:

http://abclocal.go.com/kabc/story?section=news/local/los_angeles&id=8503355

Over the course of the last two days, a major debate has unfolded. Andrew Becker, a director of media relations for the American Cancer Society had this to say about bald Barbie, ... the Bald Barbie movement could “do more harm than good for kids and parents." In addition, though you can't read his initial posting since it has been SCRUBBED from the Internet, he was so bold to state that childhood cancer was rare and therefore calling attention to it with a doll will only breed fear. In fact, his comments were down right insensitive and misinformed especially to all of us who are in a battle or lost the battle to childhood cancer. Frankly if I were the American Cancer Society, I would be wondering if Mr. Becker was really cut out for his job. Several parents posted that they wanted him to be fired. You can read the controversy through this link:

http://abcnews.go.com/blogs/health/2012/01/18/american-cancer-society-blogger-apologizes-for-bald-barbie-flub/

Today, after being blasted out of the water for over a day from childhood cancer groups, Andrew Becker (from ACS) apologized. You can click on the link below to read his apology. The problem however is the damage is already done. In fact I would like to think Mr. Becker is an isolated case of cluelessness. But he is not and ironically he represents a major cancer group. However, those of us in the cancer world know that ACS raises a lot of money but most of it goes toward their administrative overhead instead of being allocated to meaningful treatments and outcomes.

http://acspressroom.wordpress.com/2012/01/13/bald-barbie-demand-is-an-over-reach/

However, after sifting through all of this for the last two days, a part of me sits and ponders what I think about the whole bald Barbie campaign and using social media in this way to get the word out. I definitely understand Rebecca's motivations and also what she is trying to do. I admire her ingenuity and creativity and yet at the same time it just makes me pause.


I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "I was sad to read that you were still feeling so badly on Sunday. I was grateful that you advocated for YOURSELF by calling the doctor and bless Peter for going to the pharmacy. Of course, Peter would respond that way. He is such a warm and caring man. As I've mentioned before, there are many qualities of Peter that remind me of my Dad. His response to you is one of them. What I feel is that Peter gives of himself in the important ways. He is able to connect with those that he cares about with a "listening heart." I appreciate the quotes that Charlie sends as they give me much to think about. The Tillich quote and the Valett one, the day before, stress the importance of not listening to some one's words, listen to their heart. I read the story and was reminded that our greatest learnings are those that we discover on our own. Thank you for sharing it with all of us. The playing of Dancing Queen at Zumba was beautiful. I'm glad that you were able to get to the class yesterday and thanks for your note last night. I listened to my body and went to bed early. It isn't something that I've been able to do lately. Caring for others beyond ourselves is a gift to those that we reach out to. The danger is that we don't care for ourselves as completely. This isn't a subtle comment about your care of Mattie. Peter and you went to the limit with Mattie and for good cause, he is and was your child. I know that it was very difficult to subject Mattie to all of his surgeries and treatments, only to have him not survive in the end, however, your words tell it all; " that was where the great meaning lies." Your courage and resolve to give him all of the experiences that you did before and during the 14 months of his illness are a lesson plan for parents. It left you with this big hole! Each time that you speak of another organization wanting to support the Foundation, I know that others are listening with their heart. It confirms the goodness that does exist within our world. I pray that you are feeling stronger today and send my love to you in all ways."