Tuesday, March 20, 2012

Tuesday, March 20, 2012 -- Mattie died 132 weeks ago today.

Tonight's picture was taken in June of 2003. Mattie was 14 months old and though he wasn't walking independently at that age, he had his own unique way of moving around. I recall this blue whale outfit very well, and the beauty of Mattie was he could wear any color and it looked great on him.

Quote of the day: Never give up on something that you can't go a day without thinking about. ~ Author Unknown

I think it may have been symbolic that our Foundation's Symposium was on a Tuesday. A day which marks Mattie's 132nd week from our lives. The Symposium today was quite a success and one that has left us beyond exhausted. We had 83 attendees today, and on the evaluation forms and also in person we received the feedback that people wanted to know if this was going to be a yearly event! All I can say is wow! Here is what the day's agenda looked like:

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Breakfast                                                                                                               

Congressional Summit Briefing Panel   (8:45am-10:00am)  

    Victoria Sardi-Brown & Peter Brown, Mattie Miracle Co-Founders 

    Jon Agin (Alexis, Diffuse Intrinsic Pontine Glioma Angel) 

    Anne Kazak, Ph.D., ABPP; Children's Hospital of Philadelphia                          

    Andrea Farkas Patenaude, Ph.D.; Dana-Farber Cancer Institute

    Kenneth Tercyak, Ph.D.; Lombardi Comprehensive Cancer Center

    Lori Wiener, Ph.D.; National Institutes of Health

    Robert Noll, Ph.D.; Children's Hospital of Pittsburgh

    Question & Answer

 
Welcome Remarks from Rep. Mike McCaul & Rep. Chris Van Hollen     (10:00am-10:15am)

Break    (10:15am -10:30am)                                                                                                                 

Research Symposium – Session 1   (10:30am-12:00am)                                                                 
"Hot Topics in Psychosocial Care in Childhood Cancer"

    Anne Kazak, Ph.D., ABPP; Children's Hospital of Philadelphia                                          

    Lori Wiener, Ph.D.; National Institutes of Health                           

            Discussant: Jimmie Holland, MD; Founder of Psycho-oncology

 

Lunch   (12:00 –1:00pm)

Remarks from Rep. Jackie Speier (D-CA) and Senator Jack Reed (D-RI) 

Moderated Panel of Parents   (1:00 – 2:30pm)

Moderators: Deborah Dokken, MPA & Kristen DeBoy Caminiti, MSW, LCSW-C, LICSW                                                  

Break   (2:30 – 2:45pm)                                                                                                                                                         
Research Symposium – Session 2   (2:45 – 4:00pm)
  "Hot Topics in Psychosocial Care in Childhood Cancer"

    Kenneth Tercyak, Ph.D.; Lombardi Comprehensive Cancer Center

    Andrea Farkas Patenaude, Ph.D.; Dana-Farber Cancer Institute

    Robert Noll, Ph.D.; Children's Hospital of Pittsburgh

Closing Remarks      4:00pm

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Today's symposium was a great undertaking because it meant designing a program for various audiences: congressional staffers, parents, psychosocial professionals, nurses, and childhood cancer advocates. This is a vastly different audience to appeal to, but one that I decided to take on. Originally when we thought about a briefing, it made no sense to me for the Foundation to financially sponsor the traveling and lodging expenses of our psycho-oncologists just for an hour long briefing on Capitol Hill. So over time, the symposium was created that incorporated an hour long briefing, followed by two research sessions and a moderated parent panel. My goal was to design something for everyone. This could have turned out to be a disaster, but for a first time event, it actually was very successful. There are always learning lessons, but considering all the speakers we were balancing today, it went off without a hitch.
Peter and I couldn't do this alone. We had several volunteers helping us today: Tina, Heidi, Dave, and two wonderful girl scouts (Isabel and Erin!). We needed every hand and eye to help the day run smoothly, because even the best laid plans don't always work out.

The audience had the wonderful opportunity to hear from four congressional members today as they received Mattie Miracle Outstanding Legislation Awards: Rep. McCaul, Rep. Van Hollen, Senator Reed, and Rep. Speier.

I will continue to share more about the Symposium, but I will end tonight with my greeting I delivered this morning, followed by a picture.

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Good Morning and welcome to the Mattie Miracle Childhood Cancer Psychosocial Symposium. My name is Victoria Sardi-Brown and I am the co-founder and president of the Mattie Miracle Cancer Foundation. Childhood cancer is a very familiar topic on Capitol Hill since many vital groups come here on a regular basis to advocate for the funding of medical research. However, today's  Symposium and goals are a bit different because it is the first event of its kind on the Hill to discuss the psychological, emotional, and social impacts of Childhood Cancer on the child and the entire family system. Impacts which you will be able to hear more about today from both leading psycho-oncology researchers and clinicians, as well as from families touched by the disease.

Based on our incredible registration numbers, with attendees representing 12 states throughout the country, I can only conclude that this is a topic that strongly resonates with all of you for personal or professional reasons.  For your attendance, support, and for the work many of you do each day to help children with cancer and their families, we thank you!

We want to thank congressional staffers for attending throughout the day and a special thank you to Andy Taylor in Rep. Mike McCaul's office and Erika Appel in Rep. Van Hollen's office for their continued support of our mission.

Some of you here may be asking yourself..... how did the Mattie Miracle Cancer Foundation get its name? In other words who is Mattie?

(Powerpoint display of Mattie) This was Mattie Brown! Mattie was my only child, who was born in 2002, as a healthy and happy child. Mattie was a force, he had incredible spirit, intelligence, and creativity. Mattie had a special way about him, he was intriguing and he could instantly capture your attention and heart, and engage you just by talking and involving you in his play schemes.  By age 2, I realized I had a live wire on my hands, when he would help himself to our screwdrivers  in order to disassemble AND THEN re-assemble his toys.

In the summer of 2008, Mattie was 6 years old and enrolled in a tennis camp. Throughout that week of camp he complained of arm pain. A pain he NEVER had before. After two weeks of pain that did not seem to get any better, but actually worse, I took him to see his pediatrician. Fortunately his pediatrician took our concerns seriously and ordered an x-ray of his arm. It was that day, July 23, 2008, that our lives changed forever, because Mattie was diagnosed with Osteosarcoma, a form of bone cancer. Mattie battled cancer for 14 intense months, in which he had 9 months of the most toxic forms of chemotherapy, two limb salvaging surgeries which basically left him confined to a wheelchair for his remaining days, 7 months of experimental immunotherapy, a sternotomy to remove nine lung tumors, and finally radiation.  However, despite his courage and strength, only six weeks off of chemotherapy, Mattie's cancer took over his body and he died on September 8th of 2009.

Mattie is the reason that myself and my husband, Peter, commit ourselves to the work of the Foundation. Mattie was only 7, but he was my life's greatest teacher. I observed not only the physical impact of cancer on his body, but more importantly I witnessed the deep and heart wrenching psychological changes on such a young mind. Mattie's cancer also impacted my husband and I enormously. I had to quit my job, Peter struggled to balance working full time and living in the hospital, we had to adjust to living in a small hospital room for weeks on end in which there was NO privacy, sounds and lights on 24 hours a day, we had to share showers with other families, sleep in chairs, survive from one scan to the next as we awaited test results to see if treatment was working, and overall we had to worry about whether we were making the best medical care decisions for Mattie. Mattie was unable to go to school and therefore became socially isolated, depressed, anxious, and developed medical post traumatic stress disorder from his intense treatments.  

As a society we are familiar with the standard childhood cancer facts such as .......

1.      Childhood cancer is the #1 killer of children by disease, more than asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined

2.      One out of every 330 children under the age of 20 will develop cancer

3.      Each year, over 16,000 children are diagnosed with cancer in the U.S.

4.      Each school day, 46 children are diagnosed with cancer

5.      Approximately 1,400 children with cancer die each year (that’s almost 4 children a day)

It is interesting that when we hear these facts they are not followed by a discussion of the profound emotional reaction a parent has to hearing that his or her child has cancer, or even worse that the cancer has spread and the child is going to die. No instead, these facts tend to be used to advocate for the need for more medical research and the development of better and more effective drugs in order to achieve a cure. However, do keep in mind that most drugs for childhood cancer treatments are over 20 years old and only one new drug (Clofarabine) has been FDA approved in the last decade! Money must be raised for new and effective treatments, but these treatments are truly a long time coming based on the field's history. In the mean time, little to no funding and attention is given to the day to day suffering of children with cancer and their families, suffering which in many cases produce very real mental health issues that can impact cancer treatment and outcomes. Whether a cure for childhood cancer is found today or not, there will ALWAYS be psychological ramifications to being diagnosed with cancer, and undervaluing the need for quality and standardized psychosocial care leaves children and families feeling isolated, disadvantaged, and hopeless.

Childhood cancer is as much a psychological disease as it is a physical one, and it impacts the entire family. In many ways, hearing your child has cancer is the ultimate blow a parent can receive and on many levels watching your child undergo cancer treatment almost feels as if it is happening to you.  It is beyond painful to hear your child say he feels he is ugly, that no one wants to be his friend, that no one wants to play with him, or that he thinks he is dying. These are only 1/16th of the psychosocial issues that can arise from childhood cancer, and the answers to these problems are not resolved through chemotherapy, radiation, or surgery.  They can only be tackled with effective psychosocial support and treatment.

Thank you for being with us today, your presence illustrates the importance of supporting psychosocial care for childhood cancer, and together we can take a stand, though I admit it is sometimes a hard and unpopular stance, for advocating for the development of a psychological standard of care to ensure that children and families get the help, support, and hope they need to battle childhood cancer from diagnosis through survivorship or end of life care.

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My camera did not like this room space. But we did hire a photographer and will be sharing her pictures shortly. This is a photo (thanks to Terri!) of the parent panel members with Peter, myself, and Ann (Mattie Miracle Board member). The panel delivered an absolutely wonderful presentation and our moderators did a fantastic job! There is nothing as powerful as hearing about the psychological impact of childhood cancer directly from a parent.