Tonight's picture was taken on August 9, 2009. Mattie was in the Lego store of our shopping mall. The special part about this was he had the store ALL to himself and got to work with two master Lego builders. This special visit was arranged for him by Linda, Mattie's child life specialist. Mattie never got the opportunity to have a wish granted through the Make-a-Wish Foundation because Mattie never reached remission. He went from treatment right into a terminal status. Linda took it upon herself to design and get a wish granted for Mattie on her own. Mattie loved the whole experience of wheeling around the Lego store and having the opportunity to build WHAT EVER he desired. He could have chosen a Lego kit, but the irony was he built every kit in the store that year! Legos was our form of therapy and whether we were home or in the hospital, we always had Lego kits with us. So on that special Lego night, Mattie decided he wanted to design a NYC taxi cab from scratch. Mattie was quite familiar with them after visiting Sloan Kettering twice! The Lego Masters helped Mattie design this creation from their HEADS! To this day, this Lego taxi sits in our living room on display!
Quote of the day: Nothing is ever really lost to us as long as we remember it. ~ L.M. Montgomery
It has been a very long day today. I will share photos and other thoughts tomorrow. For tonight, I will share the speech I gave at the Institute of Medicine's Conference I delivered today. I have to say as time moves further away from when Mattie died, it does get harder for me to talk about him in public, especially when I know I have to make a speech that has an agenda associated with it. I was only allotted three minutes, and three minutes isn't that long. So somehow I wanted to craft something meaningful to Mattie and also do his Foundation justice. Hopefully my words accomplished that today...............................
Good Afternoon. My name is Victoria Sardi-Brown and I am the co-founder
and President of the Mattie Miracle Cancer Foundation. It is an honor to be in
the presence of so many distinguished professionals and of course my fellow
cancer advocates.
In 2009, my husband, Peter, and I created a 501c3 called the Mattie
Miracle Cancer Foundation in memory of our 7 year old son Mattie, who lost his
14 month battle with osteosarcoma. Mattie endured 9 months of high dose
chemotherapy, three limb salvaging surgeries, a sternotomy, experimental immunotherapy,
and radiation. During that time Mattie was transformed from an active and happy
child to one who was unable to walk and function independently.
As a society, we are conditioned to think of childhood cancer as a
physical disease, but it is much more than that. In fact childhood cancer is
not just about the medicine as I learned firsthand when Mattie was diagnosed
during treatment with clinical depression, anxiety, and medical post traumatic
stress disorder. Diagnoses which warranted the use of psychotropic medications.
As Mattie's parent, I had to learn that I wasn't only fighting for his life but
in all instances I was also advocating for his mental health needs, for ways to
manage his excruciating physical pain, and in the process I was confronted with
a health care system that questioned whether a seven year old could really be
in that much pain, so much pain that Mattie did not want to eat or even drink
fluids. Instead I was encouraged to consider that Mattie was simply addicted to
pain medication and his refusal to eat was just manipulation. Now Mattie may
have been precocious, but HE WAS ONLY SEVEN! In Mattie's 14 month battle, he
never received a distress thermometer or any other standardized assessment tool
to assess his pain and suffering and neither did I as his parent who was caring
for him full-time.
Unfortunately we later found out that, YES indeed, Mattie could be in
that much pain because his cancer metastasized throughout his body only six
weeks off of chemotherapy. The torment of watching Mattie die in our arms has
been the driving force for why Peter and I created the Mattie Miracle Cancer
Foundation. We believe it is vital to bring attention to the psychosocial needs
of childhood cancer and to enhance access to these services.
From our experiences caring for Mattie, was born our vision to create
and implement a national psychosocial standard of care for children with cancer
and their families. Standards that would insure that all children and families would
have access to a minimum level of care from the time of diagnosis, throughout
treatment, and into survivorship or end of life and bereavement care.
If there is nothing else you glimmer from my words today, I hope I
leave you thinking about the following. We know from the IOM 2008 report,
Cancer Care for the Whole Patient, and the IOM 2014 report, Dying in America,
that optimal care must include psychosocial care.... and that integrating
psychosocial care and palliative care are vital along the entire cancer care
trajectory for positive health outcomes.
Yet it stuns me in the 21st century that there is a disparity in the
psychosocial care and services offered among hospitals across the Country. When
we talk about cancer care in our communities and when we lobby for this care
for our children, the predominant focus is typically on medical care and drug
development. Yet any of us who has helped a child endure medical treatment
knows that there are day to day issues that arise that are just as complex and
just as heartbreaking to manage such as when your child tells you he feels
ugly, that no one wants to be his friend anymore because he is so different, or
that he feels incredible physical pain and is screaming uncontrollably or worse
when he tells you that he knows he is dying. When we talk about cancer care in
our communities and when we lobby for this care for our children we must
remember that cancer care is much more than just about the medicine. It must
integrate the psychosocial distress and pain management needs of the patient to
be effective and this mindset change is the responsibility of all of us.
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