Thursday, November 17, 2011

Thursday, November 17, 2011

Tonight's picture was taken in the Winter of 2006 in Mattie's first preschool class. Though Mattie's eyes were closed in this picture, it captures two things that I noticed right away. One, it illustrates the dynamic duo working and creating together. Mattie and his buddy Zachary were inseparable in preschool, both inside and outside the classroom. In addition, the second aspect of this picture was that Mattie was using the stapler. Mattie was a big gadget guy and it doesn't surprise me in the least that if he was given the choice between markers and a stapler, he would select the stapler.


Quote of the day: The greatest challenge of the day is: how to bring about a revolution of the heart. ~ Dorothy Day

Today was an absolute whirlwind that far exceeded our expectations and imagination. For us, I would say today was a good day! We haven't had many of these days since Mattie died, but even in our grief ridden state, we can't help but see the impact we are making. It seemed like one Mattie Miracle achievement after another day. Mattie would have been proud and pleased!!!

Our morning began by attending the "Creativity and Innovation" business school class at Georgetown University. As my avid readers know, this business class adopted Mattie Miracle as their service learning project. We met with these undergraduate students for the first time on the second anniversary of Mattie's death, September 8, 2011. During that class we introduced the students to Mattie's life, discussed his battle with childhood cancer, and then gave them an overview of the Foundation. Over these past two months, the students have been working on all sorts of strategies and ideas to help Mattie Miracle grow more effectively and productively. The purpose of today's class was for each of the five student groups to present their ideas on PowerPoint slides and then to seek our feedback and next steps.

The groups all presented innovative ideas, some of which we can easily adopt NOW! In addition, the students have done some of the leg work for us and have helped us connect to resources on Georgetown's campus and within the community! Peter and I very much enjoyed our time with this class and felt it was stimulating to hear their ideas and for us to pose questions! Later today, Dr. Bob Bies, the professor of the class wrote this to us....."you meant so much to my students. They got it.... they got Mattie!" That is music to my ears and I was touched to see a few of the students wearing their Mattie Miracle pins that we gave them back in September.

Bob ended his class today with the Dorothy Day quote that is listed above. I would say Mattie Miracle caused a revolution of the heart in several places today. One was with these business school students, but the second was on Capitol Hill, and the third was at Georgetown University Hospital's Friends and Sponsors dinner held at the Four Seasons Hotel in Georgetown. I could clearly see we evoked major changes in people today, whether it was through inspiring them to pursue an idea or literally feeling an emotion and crying.

Before the class ended we took a picture of this dynamic, bright, and inspiring group of students. Bob is on the far left and Peter is on the right.

For my readers who want to hear the student presentations to the Foundation, Bob videotaped them and sent us the link below. I wish I had access to such technology for all the things Mattie Miracle participates in.
Presentation Details:
Title: Classroom Presentation (140)_001
Date: Thursday, November 17, 2011
Time: 9:30 AM (UTC-05:00) Eastern Time (US & Canada)
Duration: 1:15:00
Link: http://msb.mediasite.com/mediasite/Viewer/?peid=1c0b86f9cb9541ffac5ca10e795d79451d


After Bob's class, we had a meeting on Capitol Hill with Rep. McCaul's Legislative Aide, Andy. I am very fond of Andy, and one of my gifts or curses is I can usually read people right away. I can tell whether you are listening to me and I can especially tell whether you are aligned with us on our Mattie Miracle mission. When I met Andy months ago, I sensed he was going to be an asset to our cause. Stay tuned for more on this front, because Mattie Miracle will be working with Rep. McCaul to plan an exciting and first ever event of its kind on Capitol Hill this spring.

In the midst of this good day, I was deeply troubled about a particular issue which I am not planning on discussing here. I can get easily upset and angry over certain things that tie or connect to Mattie's memory. If I feel that Mattie isn't being remembered appropriately or kindly by those in his life, I get frustrated. I am lucky however, because when I need someone to bounce feelings off of, I can send an email to Karen. In typical Karen fashion, she got why I was upset immediately, normalized the feelings, and helped me understand why there was a disconnect between myself and others in my life. Her email made a big difference to me.

Tonight, we attended Georgetown University Hospital's Friends and Sponsors dinner. Peter and I were being honored with a special recognition award. We found out last weekend that we would be given a table at the event and that our board or friends were welcomed to attend. When I quickly realized that our board members weren't able to attend, I began reaching out to our close friends, who also happen to be Mattie Miracle supporters. I did not give them much advanced notice, but one by one, each of them rearranged their schedules, found childcare, and came tonight to support us. If that is not true friendship, I am not sure what is. We had a lovely time together, and having their support, helped make a very challenging speech a bit easier to deliver.

Before the dinner started, we snapped some pictures of our friends and supporters. I entitle this picture....The girls! Pictured in the front row is Tina and Margaret, and the second row is Ellen, Vicki, and Christine.

Here is a picture of our entire table of friends. In the front row is Ellen, Tina, Vicki, Margaret, and Christine. In the second row is Jeff, JD, Peter, Brian, and James.

Pictured with us is Linda Kim, Mattie's Childlife Specialist! One of my main objectives tonight was to make Linda feel special and for people in the audience to acknowledge her amazing contributions to children and their families at Georgetown.

At the end of the evening Linda gave us flowers and the Hospital gave us this Tiffany engraved bowl! A bowl I will cherish.

Tonight's event was an incredible experience. To help my readers feel like you were there, I am going to share with you how we were introduced, then you can read Peter's speech, followed by mine.

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Introduction of Mattie Miracle from Dr. David Nelson, Head of Georgetown University Hospital Pediatrics

We are honored to recognize the contribution that has been made by the first foundation that we are acknowledging this evening with the 2011 Special Recognition Award.  

The Mattie Miracle Cancer Foundation was founded in the loving memory of Matthew J. Brown, or as he was better known to his friends and family – "Mattie." 

The Mattie Miracle Cancer Foundation is dedicated to increasing awareness for Osteosarcoma and other pediatric cancers, education, advocacy, research and supporting the psychosocial needs of children and families living with pediatric cancer.

Although much of their work involves increasing awareness, education and advocacy for pediatric cancers…the Mattie Miracle Foundation also makes significant contributions to support the psychosocial care of children and families facing cancer. Because of their generosity and support, we have a new Child Life Specialist position here at the Hospital to assist Linda Kim and her team…particularly to support, educate and comfort children and families during procedures and scans. They have also provided support for the PAB Family Snack Cart that provides – at no charge - snacks for families who have children admitted to the Georgetown…along with books, toys and other gifts for children that are contributed on a regular basis. 

The Mattie Miracle Cancer Foundation intends to make a difference…which they do every day. In recognition of that difference, we are honored to present the 2011 Special Recognition Award to the Mattie Miracle Foundation…it is my pleasure to introduce Mattie’s parents and the co-founders of the Mattie Miracle Cancer Foundation - Peter Brown and Victoria Sardi-Brown. 

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Peter's speech!

First, I want to thank Georgetown Pediatrics for this award.  It’s amazing and a little overwhelming, to be getting an award from an organization that treated us so well as a family, for helping them to continue to do the incredible job that they do for families.

Second, I want to thank our friends table, down in front here, whom have become our family. They have been with us through thick and thin, and they continue to be there for us, and without them, we could not do the things we do today.

I want to start with a quote by Ruth Smeltzer:  “You have not lived a perfect day, even though you have earned your Living, unless you have done something for someone, who will never be able to repay you.”  I find this a great motto to live by…

I am a co-founder of the Mattie Miracle Cancer Foundation, a national 501(C)(3) non-profit, that my wife Vicki and I created in the memory of our son, Mattie.   

Mattie, our only child, was diagnosed with Osteosarcoma, a type of bone cancer, in July 2008, and after a 15 month battle here at Georgetown, he died on September 8, 2009 at the tender age of seven and a half.

Two months after Mattie’s death, we founded the Mattie Miracle Cancer Foundation, because inspite of the excellent care we received here at Georgetown, we learned ourselves and from other families that the psychological, emotional and social aspects of a child and their families dealing with cancer, was just not getting the proper attention that it should by the overall medical profession.

So, we did something about it, and created the foundation, whose mission is to address the psychosocial needs of children and families with cancer.

In reality, inspite of the all the medical treatments that Mattie endured, the chemotherapies, the radiation, the surgeries, the drugs, the experimentals, and anti-nauseas, that the medicine is really only just a small part of what really goes on in treatment and survival. 

In fact, a vast minority of the time was actually spent on medical treatment, whereas the vast majority of the time was spent on all the time in between those treatments….

This only underscores the importance of recognizing that the psychological and emotional aspects of childhood cancer are just as important, if not more important proportionately, than the medical treatments themselves. 

Because remember: even if we had a 100% cure rate, there would still be devastating psychological and emotional impacts on the children and families fighting childhood cancer.

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Vicki's Speech

*** Note to my readers (I did not say this!): Until last night, I had NO idea what I was going to say at this awards ceremony. I ran into a complete block, mainly because for me talking about Linda is very emotionally laden. I wanted whatever I said to be powerful and to convey her unique, special, and outstanding skills, not to mention her compassion as a person. Finally last night I was able to move past my writer's block and began to think clearly. I copied my speech below, but you should know I wasn't reading it, I was talking from the heart (and had the speech to turn to if I got flustered). While I was talking, you could hear a pin drop in the room, that is how quiet it became and when we were done, we were the only award recipients to get a standing ovation. It was a powerful moment, which I wish we had recorded.

Sometimes a person comes into your life and transforms it by giving you hope under life's worst circumstances. For us, Linda Kim is that unique and rare ray of hope. Linda steadfastly helped us throughout Mattie's cancer journey, especially during the times in which Peter so aptly referred to as "the majority of time in between treatments." It is hard for me to briefly talk about a person who we are so grateful to and admire professionally. But I will certainly try. I must admit that when I entered Georgetown Hospital in July of 2008, I had no idea what a childlife specialist was or even did. Like most six year olds who are diagnosed with cancer, Mattie was frightened, scared, and upset about being isolated from his friends. In addition, we had no local family to support us through this crisis. Mattie's art therapist, Jenny, felt given Mattie's significant issues, that we would benefit from meeting her colleague Linda Kim.

The idea of allowing one more person into our life during those first weeks after diagnosis, did not appeal to me. Mainly because we were being inundated with so many professionals and specialists that I did not think I could manage another one. However, we did decide to meet Linda one day in clinic. When Linda meets with any child and his/her family, she never comes empty handed. In tow, she had a cart filled with toys, books, and other things to stimulate, engage, and connect to Mattie. When Mattie saw Linda (for the first time) and her cart enter the clinic, his face began to light up. It was at that point I realized we needed this medical Mary Poppins on our team.

However, play is just one component of Linda's job. It doesn't take long to see that Linda has outstanding skills at assessing the needs of her patients and their families and finding a way to meet those needs. For me, Linda became my Mary Poppins, my Florence Nightingale, and my Mother Teresa, all rolled up in one.

After that first encounter, Linda became an integral part of our world, who we turned to in both the good times and the too numerous to mention bad moments. Linda connected, understood, and appreciated Mattie, but she also connected with me. Mattie's treatment left him physically disabled and psychologically and emotionally fragile. In many ways, Peter and I were not far behind. I recall that one day when Mattie was inpatient, he had an MRI scheduled. Linda accompanied us to the day surgery center to await his sedation for the scan. However, I was emotionally wiped out and also not feeling well that day. I was congested and my left ear was completely filled with fluid so I could barely hear out of it. While in the day surgery area, I collapsed into a chair with a blanket around me and closed my eyes. I had to unplug from the situation, and fortunately I could do that since Linda was there to play and talk with Mattie. While I had my eyes closed however, something caught my attention. I was hearing the joy, laughter, and happiness of not Mattie with cancer, but what Mattie sounded like before he was diagnosed. The next thing I know, I felt as if something miraculous was happening. My ear popped and I began to hear clearly again. I was so excited that I said, "Linda, I can hear." I am telling you this story because I want you to know I have many of them, this wasn't an isolated incident. That day Linda gave me the respite I needed to regroup and feel better, but she also gave me hope, that despite Mattie's body being ravaged with cancer, his spirit and personality were untouched and very much intact.

Peter and I had the opportunity to interact with other childlife specialists at different hospitals during Mattie's extensive treatment. I can assure you that not all childlife specialists are created equal. Georgetown has a very rare gem in Linda Kim. She gives 110 percent of herself to her patients and families and I can attest to the fact that it is due to her, Mattie always looked forward to coming back to the hospital. Not for his treatments, but to spend time with his friend Linda who understood him.

We couldn't imagine going through the cancer journey without Linda, and by establishing the Mattie Miracle Cancer Foundation Childlife Program Support Fund, this ensures that every child at Georgetown has access to Linda and her fine team.

Awards mean different things to different people. I would like to think Mattie is with us tonight in spirit and looking down on us and saying... "Mom and Dad you did good, I am happy you are supporting my buddy Linda. A person I trusted and loved." We want to thank Georgetown Hospital for 15 months of outstanding care and for giving us the opportunity to remember our son in this special way.

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After the event was over, I received this lovey text message from my friend Tina. I really appreciated her observations and feelings! Tina wrote, "You did great tonight! Both of you. Such a moving speech. It was an honor to be with you! Could you feel the vibe in the room when you were done? I'm not as used to it as you. Such admiration. You move people. Mattie would be proud."

After we spoke, many people came up to talk with us, hug us, and some even cried with us. One of the people who approached me did not know that Mattie died and was visibly upset to hear this in our speeches. Why? Because this man's son, Nicholas, played Scooby Doo in this picture (we did not know this, we learned this tonight). This picture was taken in August of 2008, during Mattie's first chemotherapy treatment. Nicholas' dad told me tonight that people were cautioned not to go into Mattie's room that week, because things were frankly quite volatile. However, Mattie loved Scooby Doo (stuffed animals on the bed should be a good indicator), and when he saw this huge character, Mattie immediately invited Nicholas into his room. Apparently this encounter has remained with Nicholas (who is only 19 years old now) even today, and his dad tells me that Mattie transformed his son's life. It was one powerful story after another tonight and was a real reality check for us about how Mattie touched people's lives and what the Foundation is doing to help.