A day NEVER to be forgotten, July 23, 2008! A day that changed our lives FOREVER! Eleven years ago today, Mattie was diagnosed with Osteosarcoma (bone cancer). July 2008, Mattie was enrolled in a tennis camp. A week into the camp, Mattie complained of arm pain. We figured he sprained something or had a sore muscle from holding the tennis racket.
While enrolled in camp, I attended a conference in San Diego. Each night while I was away I checked in with Peter and I continued to hear that the arm pain wasn't getting better. Before leaving San Diego, I made a doctor's appointment to take Mattie in the day after I landed back home.
Fortunately Mattie's pediatrician took our complaints seriously, as I told her the issue had been going on for two weeks, with no improvement. From the doctor's office, we walked over to Virginia Hospital Center for x-rays. I admit that I got very frustrated with the radiology tech, because what I deemed should be an easy x-ray process turned into an hour fiasco.
After the x-rays were taken, the tech told me to go to a waiting room. I will NEVER forget this room. Mattie and I walked into a room filled with adults. NO hospital representative was in the room, only patients and ONE phone. We sat down and within five minutes the phone rang. NO ONE went to answer the phone, it just kept on ringing. So I decided to pick it up. On the other end was the radiologist, who asked for Mattie Brown's mom. When I told him I was Mattie's mom, he then said I needed to go right back to the pediatrician's office.
I said, ABSOLUTELY NOT! I wasn't leaving that room until he told me what he saw on those x-rays. He did not want to tell me, but I forced it out of him. So I heard that Mattie had osteosarcoma over the phone, surrounded by a group of strangers and Mattie staring at me. I tried not to sound alarmed but it's a bit hard after hearing...... your child has cancer.
July 23, 2008, was my first experience with medical trauma, and unfortunately that was just one of many traumas we experienced as a family. You maybe asking what's with these photos and the Christmas lights? Mattie requested that we take all our Christmas lights out on diagnosis day. He did not understand cancer, but he knew enough to know that something was very wrong and that the bright lights of Christmas may help lift all our spirits. The beauty of Mattie Brown..... you are dearly missed.
Quote of the day: If the people we love are stolen from us, the way to have them live on is to never stop loving them. ~ James O’Barr
Given that today marks the anniversary of Mattie's 11th anniversary of his cancer diagnosis, we wanted to make a statement in his memory. No better way to do this than with a Press Release! We are honored to partner with our friends at Momcology, a childhood cancer national non-profit that provides evidence based supportive care for families coping with childhood cancer. The press release highlights the fact that Momcology officially became an endorser of the Psychosocial Standards of Care. An endorsement means that Momcology feels the Standards are essential in the delivery of care to children with cancer and their families.
Peter and I know the founder of Momcology, Kim Buff. Though she lives in Florida, we have had multiple opportunities to meet and share ideas at various conferences. Momcology works directly with families and truly values our Psychosocial Standards of Care. Therefore collaborating in the future on ways to spread awareness of these Standards to families is vital. As I have seen parents effectively advocate for their children's medical care, but seem uncertain what they can do to help meet their children's psychosocial needs as well as the needs of their family. We want to change this as the Standards are NOT only for professionals. Families have the right to demand that their treatment institutions adopt and implement the Standards. As optimal psychosocial care impacts treatment outcomes and quality of life.
Here is a beautiful message posted on Facebook today by Kim Buff (the founder of Momcology)
Approximately 2.5 years ago, just as we were finishing up our first pilot cycle of Momcology peer-to-peer support groups at Children's Hospital at Philadelphia (CHOP), we were called-in to present our results to our program adviser and with that, also have the opportunity to share with certain members of Children's Oncology Group. Our team walked into one of the many CHOP campus towers with three things printed and tucked into our portfolios for presentation. 1. The survey results and testimonials from our pilot program, 2. A self-made flow chart and design schematic of scalability, and 3. A full printout and highlighted copy of the Psychosocial Standards of Care to support our position of the need for the implementation and approval of year 2 of that particular program. That day, with those resources, we accomplished our goal.
Momcology has always found value in the work of the Mattie Miracle Cancer Foundation and the Psychosocial Standards of Care as we grow our programming and mission. We've heard professionals at conferences call The Standards of Care their guidebook and roadmap as they build their own hospital's psychosocial services departments. This endorsement today officially shows our commitment to these professionally developed standards, but also that Mattie Miracle Foundation finds value in the community and programs we have built over the past 9 years for parents and caregivers of children diagnosed with cancer through Momcology. I personally consider this nothing less than a full circle moment in the mutually collaborative progress for families. I share this long statement because our work has been created with nothing less than thoughtfulness and intention by our team. We will continue to lean on the Standards of Psychosocial Care and the guidance of Victoria and Peter Brown as we continue to build meaningful support programming for parents with professionals. We are excited about what this collaboration means both today and for the future.
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I am lucky enough to have wonderful friends who want to celebrate my birthday. Today is my friend, Mary's (in pink) birthday. Our friend Carolyn treated both of us to a wonderful lunch at Le Refuge in Alexandria, VA. My loyal readers know that Carolyn and I go way back as her daughter, Ellie, was in Mattie's preschool class. Carolyn is also our Walk Raffle Chair, and has done this incredible job for ten years. I met both Carolyn and Mary through Mattie's preschool. Which was a very special and enriching place. It is the place where some of my closest and most loyal friendships were born. On a side note, I used to have lunch at this restaurant with Mattie's preschool teacher, Margaret. So I felt Margaret would be happy that the three of us got together today and are continuing her luncheon tradition. 
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