Tuesday, December 8, 2009

Tuesday, December 8, 2009 -- Mattie died 13 weeks (3 months!) ago today.

Tonight's picture was taken on Roosevelt Island. Mattie loved climbing on rocks there and you can see he is holding a large stick which he acquired along his journey. In fact, Mattie had one of the largest stick collections around. Each walk we took, he would acquire a new stick, and literally you should have seen the pile of wood he created right outside our front door. He was as sentimental as I am, and loved acquiring keepsakes as reminders of people and places he had been to.

Poem of the day (Thanks to Chris, Sammie's mom): Chosen One

If before you were born,
I could have gone to Heaven and saw all the beautiful souls,
I still would have chosen you...
If God had told me "this soul will one day need extra care,"
I still would have chosen you...
If He had told me "that one day this soul may make my heart bleed,"
I still would have chosen you...
If He had told me "this soul would make me question the depth of my faith,"
I still would have chosen you...
If God had told me "this soul would make tears flow from my eyes that would overflow a river,"
I still would have chosen you..
If He had told me "our time spent together here on Earth could be short,"
I still would have chosen you...
If He had told me 'all that you know to be normal would drastically change,"
I still would have chosen you...
Of course, even though I would have chosen you,
I know it was God who chose me for you...
Thank you God for allowing me to be your mommy!


Today marks the three month anniversary of Mattie's death. I calculate Mattie's passing in weeks. However, today I received a lovely e-mail from Mattie's social worker, Denise. In the e-mail she acknowledged the fact that Mattie died three months ago. Some how seeing the passage of time in months was startling to me. I am not sure why? Maybe because it is hard to believe three months have passed by already, and yet it feels like only yesterday we were fighting the battle of a lifetime!


I want to thank so many of you for checking out the Mattie Miracle Cancer Foundation website. We also appreciate the very generous donations that have come into us today. Peter and I are so appreciative of the fact that so many of you have continued to stay connected with us and are working hard at keeping Mattie's memory alive. There can be no greater gift we could receive!


I had the wonderful opportunity today to meet up with Ann, Mary (Ann's mom), and Ann's aunt (Dotty) who is visiting from Massachusetts. We all had a good time together, shopping and having lunch. It is a wonderful feeling to be included and in many aspects this in and of itself is very healing.

When we got back to Mary's assisted living facility today, I happened to look at the person playing the piano for the residents. I had to do a double take, because you will never guess who it was? It was Jerry! Jerry is the "piano man" from Georgetown University Hospital. He and Nancy were Mattie's favorite musical volunteers! I am deeply fond of Jerry for all the joy he brought Mattie and I. Even in my worst days, when Jerry would come into Mattie's room, for that half an hour, we forgot our troubles and sang and played Name that Tune with Mattie. When I saw Jerry playing today I was simply stunned. We both acknowledged each other, gave hugs, and the residents did not know what to make out of us. Joining Jerry in song comes natural to me, since I did this for MONTHS! So today, Jerry played the piano, I sang, and the residents played Name that Tune. I have asked Jerry to let me know when he comes back to Mary's assisted living facility again, so we can potentially team up. I introduced Jerry to Ann. Jerry has heard a lot about Ann, but hadn't met her before. It was like a reunion of some sort today, and for that moment in time, I felt as if Mattie was smiling down at me.

When I said goodbye to Mary and Dotty this afternoon, Dotty said to me that she thought it was fate that I met up with Jerry today, and that this was a positive sign. I think she was right, because seeing Jerry made me happy, and singing and talking with the residents was very special.


Tonight was the Mattie Miracle Cancer Foundation's first board meeting. The meeting went extremely well, and the dynamics amongst board members was collegial, open, and most importantly I felt everyone was motivated to make this Foundation a success. We talked about the complexities of funding research, and while we build up funds to actually support this endeavor, the Foundation can focus its attention to enhancing social support services for patients and families. In fact, the medical professionals on the board encouraged us to pursue this portion of the mission. This is certainly an area that I am very passionate about, but wasn't sure how the rest of the board would perceive this. So when I heard the medical doctors on the board express that this would be a value added to the pediatric cancer community and that this would be a great contribution on behalf of the Foundation, I was extremely happy and pleased. After a productive meeting, we all went out to dinner together, and the conversations and ideas continued flowing. I want to thank many of you for the positive wishes today, and I am happy to report we are off to a good start with a very talented board.


I would like to share Part II of the Mattie Capers with you. As many of you know, this is a story told by my mom. What I particularly like about Part II is it allows me to see how cancer transformed Mattie's energy level and the kind of play he was able to engage in. I hope you find this as insightful as I did, because I got to see Mattie through the eyes of my mother.

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The Captain Mattie Capers - Part II by Virginia R. Sardi

Mattie’s Fighting Spirit keeps “The Game” Alive

In reflecting back over the last years of Mattie’s life, the changes that cancer made in our lives clearly differentiates the previous innocent period of play from how we played ”the game” after Mattie became ill. Nonetheless “the game” went on and transformed itself on an “as needed” basis primarily because Mattie loved it and wanted it to continue. In the early days before his illness, I naively took for granted the stability in our lives that made it possible for us to interact freely with Mattie, all of us carefree and exuberant, unsuspecting of what life had in store for us. Our five senses could not detect a threat so ominous and devastating in its capacity to inflict pain that in retrospect it seems impossible that we had no awareness of the dark clouds amassing over us that threatened our precious tranquility and peace of mind shattering forever all our conventional expectations about life, faith and destiny. With a fateful telephone call from Vicki on July 23, 2008, I realized at once that Mattie, a healthy and bright little boy with no previous history of serious illness would be faced with the fight of his life in the days ahead and was stunned to hear that the diagnosis of multi-focal osteosarcoma meant that the disease was aggressive and that the prognosis for a cure was iffy at best. His odds of survival were about 10%. I was enraged that an innocent child like Mattie had to experience the horrors of chemotherapy and limb salvaging surgeries even though there were no guarantees that any of these invasive and debilitating procedures would actually save his life or even prolong it. At first, some doctors expressed the hope that he could make a complete recovery but after he was seen by specialists at Sloan Kettering, I understood how challenging his case was. I still wanted to believe that a cure was possible because I could not face the alternative. In my heart, I knew that he would have to endure suffering, deprivation and pain which seemed incomprehensible then and still troubles me now for there is no earthly explanation for WHY he was chosen to carry such a heavy burden in this life given that he was so gifted and bursting with energetic youthfulness that shouted to the world with passion, “I want to live.” His decline and fall is a condemnation against nature itself! It is not possible to rationalize away the trauma that tested the heart and soul of his parents and be witness to the slow painful obliteration of a beautiful life that held so much future promise without feeling deep bitterness.

I know that I digress from my original objective which was to depict the events of “the game” and how it was transformed by cancer but it seems imperative to take a moment to express my feelings about how much more needs to be done to increase survival rates of children with osteosarcoma. Much progress has been made in fighting cancer in the last decade, although very little of it directed towards promoting better medical treatment of osteosarcoma. There is still so much more that can and should be done. That is why I’m so pleased that the Mattie Miracle Foundation will address this need by making the public aware of the deadly nature of the disease and undertake the funding of research projects to improve the survivability of more children with its attendant goal of finding less invasive and traumatic ways to treat children who are stricken.

Getting back to “the game” itself, you may wonder what happened to it after Mattie was diagnosed with osteosarcoma and began his rigorous and debilitating treatments at the hospital. “The game” underwent a metamorphosis that transformed it into an activity more suitable to his physical limits and more innovative in scope. But, indeed, “the game” did go on. Interestingly enough, we never played it in the hospital but whenever he returned home and we assembled in his living room, he was ready to go and so were we!

The very first time though that I can vividly remember playing the game after the diagnosis was sometime before his first surgery. He had been undergoing chemotherapy for a number of weeks but still had a lot of spunk, verve and drive. Mauro and I had rented an apartment in the complex that Vicki and Peter live in to be close at hand and lend support more easily during these difficult days. It was a Sunday when Vicki suggested that Mattie come to our apartment so that she could get some much needed rest for a few hours. We were delighted with the suggestion and were equipped to engage in “make believe” because Vicki had asked us to store one of Mattie’s big art projects from the hospital in the living room of our apartment. It was a structure made out of at least 8 big cardboard boxes and became the basis for our new play protocol. In this play scenario, “Captain Mattie” became the head of a team of computer experts tracking down evil doers in outer space who were being lead by none other than,” Captain PopPop Bad Guy.” It was a complete departure from the past and was a natural extension of Mattie’s inventive genius and his growing maturity and interest in outer space. The cardboard boxes became “Captain Mattie’s Control Station” which we outfitted with improvised computers to track the progress of our actions to insure peace in outer space and apprehend and bring to justice all the troublemakers lead by “Captain PopPop BadGuy” who wanted to take over Mars to make it his new base and subjugate all the friendly little Martians who had lived there for centuries. “Captain Mattie” used all his resources to help the Martians keep their planet safe from the nasty invaders. In the end, the Martians thanked him and everybody lived happily ever after. This was the first time we played the space version of “the game” because he did not have all his toys readily available and so it was necessary to use the box structure as the basis for the new adventure. We played whenever possible until we left in June. After chemotherapy and the surgeries he was not able to do all the physical stuff that usually was a big part of every game, so the dynamics of “the game” had to be modified to allow him to command the action from his wheelchair or a comfortable place on the couch in his living room. As he could no longer build the electric power station or the city with all the little people, we looked for other ways to continue “the game” because we knew that Mattie still wanted to be involved in imaginative play with us. As he could no longer rely on his body for any comfort, we thought it important to find ways to preserve the one activity that could fully engage his mind. Together with Mattie, we slowly recreated a tantalizing new story line that developed into an exciting game over the course of the few remaining months of his life.

When we returned in August, we continued “The Game” with renewed vigor but under very stressful circumstances and with a very different purpose. We played it with him whenever he was up to it until the last week of his life and regard it as our unique contribution to Mattie’s peace of mind, giving him something pleasant to look forward to and some final childhood moments of joy and happiness. How “the game” evolved and changed during the last three weeks of his life is to be the subject of the final Chapter of “ The Captain Mattie Capers!”

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I end tonight with six messages I received. The first message is from my friend, Charlie. Charlie wrote, "First, I have to say I love the logo for the foundation. It is wonderful, warm, strong, striking in appearance and very unique. I love how the sun is part of the "c" for cancer to indicate that there is hope for a cure. You and Peter did a wonderful job. The website is coming along well and I am pleased that you chose to put your tribute to Mattie on it. The first (and last) time I saw it I was crying so hard I could barely see through my tears. I am sure yesterday's efforts with the gingerbread houses were frustrating but good for you for going back and getting them done. That's the sort of effort running a foundation takes. I know Mattie will be with you, singing you can do it, into your "inner ear". Be patient today as you get your foundation board up and running. I hold you in my thoughts."

The second message is from Mattie's oncologist and now our friend, Dr. Kristen Snyder. Kristen writes to us every Tuesday to acknowledge the day Mattie died. Kristen wrote, "Today is Tuesday. But I feel like it is a different kind of Tuesday than the Tuesdays we've had for the last twelve weeks. Today, is the Tuesday the Foundation website was launched! And it is a beautiful site...with Mattie's sun as the backdrop and his face smiling over the pages! I love it. I've read through it. Your words are heartfelt and palpable. I'm looking forward to the events of the spring and summer!! Good luck tonight with your first board meeting. I can feel the energy for the foundation moving things forward and I'm certain Mattie is excited and so very proud! Thinking of you, this Tuesday and Always."

The third e-mail is from a former student. Tess wrote, "I was thrilled to get a link to your Foundation website in tonight's blog posting, and I have just taken in each page with amazement. This is already turning out to be such an incredible initiative, and your mission, descriptions, everything looks phenomenal, compelling, articulate, compassionate, heartbreaking and impactful. I'm thrilled to see some of the figures who have become familiar to your blog readers as serving on your board - I am so excited to watch this project grow. What an extraordinary tribute to Mattie. It is also delightful to recognize Mattie's Mr. Sun painting as the background of the website - one more detail that speaks movingly to the brilliant power of Mattie's life and the light-filled impression he has left on all of us. I want to tell you how much your writing and reflections mean to me...your descriptions are so full of human feeling, it is sometimes overpoweringly potent to read - filled with such love, grief and tender, deep emotion as I have never seen put into writing the way you do. I am thinking of you daily Vicki, especially in this brutal holiday season, and am holding you, Mattie and your Mattie Miracle Foundation in my thoughts and prayers, deep in my heart.You are a true hero to me Vicki - vulnerable, brave, tireless, real, loving mother."

The fourth e-mail is from a colleague of mine. Denise and I went to graduate school together and she came up from North Carolina to attend Mattie's funeral. Denise wrote, "I just saw the foundation's website, and it looks amazing! You can tell a lot of love and effort went into its creation. I love the sun as the background for the pages, and the pictures of Mattie are a wonderful touch. It really personalizes the website, especially for those who didn't know Mattie. I wish you all the best as you lead the foundation to find happier endings for families. I know in my heart of hearts that you will be successful!! Please let me know if there is ever anything I can do to assist, aside from the donation we will be making later this month."

The fifth e-mail is from a former student of mine. Cynthia wrote, "After reading the blog, I clicked on to the foundation website. When I got to the Mattie's Story page, I felt the world nearly stop. I never knew the story of how you discovered the cancer. Those few sentences about the tennis camp are like a terrible car accident: Everything is fine one second, but that is the very last second that they will be. In the very, very next second, "fine" is blown away.I applaud you for your fight and determination to as you claw your way through your grief. I know it hurts probably every second of every long minute for hours and days at a time. Yet, you are living, and you are trying, and you get together with friends, and you take projects upon yourself, and you complete them well, and now you set about to do battle with Mattie's disease in a whole new way.Anyway, this is just to say, I am so very sorry; but it also is to say, you are inspiring."

The sixth e-mail is from a former student of mine. Ariel wrote, "I just wanted to let you know that even though I haven't written in a while, you, Peter and Mattie are constantly in my thoughts. I continue to ready your blog daily and am in awe of your ability to be so honest with the struggles you continue to face. I can't even imagine the pain you are going through. It is hard to describe the feeling that I get just reading about you and Peter attempting to live your lives without Mattie. Based on how devastated it makes me feel, I can only imagine how it is for you. I admit, there is no way for me to understand how you feel, but like all your other readers, I am trying to. I also wanted to tell you that over Thanksgiving I was helping my 6 year old cousin build an Indiana Jones lego set and I couldn't help, but think of Mattie. I was never really into legos, but I have to say I was fascinated and enjoyed watching my cousin as he attempted to put the pieces together. I can't help but think this is a result of reading about and seeing many of Mattie's creations over the last year. I have to say, I didn't realize how truly complicated legos can be -- Mattie was clearly a lego master. I am so happy to see the Mattie Miracle Cancer Foundation coming along. I am thrilled to have made my first donation and I hope to not only donate myself, but to also brainstorm some ways to fundraise in NYC. Thinking of you always and wishing you as much peace as possible during this difficult holiday season."