A Remembrance Video of Mattie

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to me that you take the time to write and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful and help support me through very challenging times. I am forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically have stopped writing on September 9, 2010. However, like my journey with grief there is so much that still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with me, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki



January 18, 2012

Wednesday, January 18, 2012

Wednesday, January 18, 2012

Tonight's picture was taken in January of 2009. It reflects one of my happy memories living in the PICU. Anna (Mattie's physical therapist) and I worked very hard by day at retraining Mattie to walk. Remember Mattie on November 12, 2008, had his right leg operated on, specifically he had his femur (the bone that extends from the hip to the knee) removed and replaced with a prosthetic. A leg operation would have been hard enough to recover from, but keep in mind that Mattie also had prosthetics in both his right and left arms and left wrist. That did not provide him with much upper body strength to use a walker. In fact, Anna tried a front moving walker, and Mattie hated it. He had a hard time moving the walker forward. So then Anna tried him on this reverse walker, and Mattie seemed to gravitate to it. In fact, Mattie began taking a few steps and as you can see, Anna raised her arms in victory. Though Mattie tried very hard and had a great support team helping him which was comprised of Anna, Linda (Mattie's Childlife Specialist), Meg (one of Mattie's Childlife Interns, who was his racing buddy), and Jenny and Jessie (Mattie's art therapists), Mattie never was able to walk independently after his surgery in November of 2008. So the victory you see in this picture was short lived and in many ways, it was devastating for us to not only have a child battling cancer, but also a child with significant disabilities. The combination was hard to manage at times, and naturally Mattie understood his limitations and this impacted his mental health in profound ways.


Quote of the day: Vision is the art of seeing the invisible. ~ Jonathan Swift


The Foundation has exciting news to announce! Today, our Mattie Miracle Face of Hope, Lauren Chelenza launched her new website: www.bowsforhope.com.   Lauren was diagnosed with Osteosarcoma about a week after Mattie, in August of 2008. However, we did not meet Lauren and her family through Georgetown University Hospital. That is because Lauren lives in Pennsylvania and was treated at a hospital in her state. So the question is how did we connect with Lauren? Lauren's aunt found Mattie's blog on the Internet and told her sister Carey (Lauren's mom) to read it pretty soon after Lauren was diagnosed. Carey then emailed me and the rest is history. Carey and I immediately related to each other, we had similar stories, had similar feelings about the experience, and since the medical treatment for cancer is basically standardized across the country, Mattie and Lauren were undergoing treatments about a week or so apart from each other. Though Mattie and Lauren NEVER met each other, they in a way had a camaraderie because they were fighting the same devastating disease at the same time. I am sure in many ways it is hard for Lauren to accept that Mattie died, because at her tender age of 13, I imagine it causes her to reflect on her own mortality.

Peter and I met Lauren and her family for the first time in December of 2009, at a Candlelighter's Christmas tree ribbon event in Washington, DC. Lauren has a brother whose name is Matthew and happens to be my Mattie's age. In fact, Matthew sent my Mattie gifts while he was battling cancer. Matthew and Mattie had similar tastes and Matthew's gifts always made Mattie laugh! Though Peter and I were traumatized at that Candlelighter's event, Lauren left an impression on us. As you can see from her picture she is a beautiful girl with a captivating smile. So bright, you wouldn't imagine that this face has experienced the horror of Osteosarcoma.

Lauren has taken her experience and uses it to bring awareness to her community. She began designing duct tape bows for a class assignment, and the next thing she knew she wasn't only generating funds but she was promoting a cause and spreading awareness of childhood cancer. Lauren to this date has generated thousands of dollars for Mattie Miracle, and I encourage you to visit her website where you can read HER own story. Lauren created her non-profit whose sole mission is to raise money for Mattie Miracle. She is passionate about this cause, she is energetic about it, and from my perspective she is a fine role model for teenage girls. She shows us all that with determination, a vision, and creativity anything is possible. Please visit Lauren's website and tell others about her great work.

Now I am switching gears to a totally different topic. The topic is Bald Barbie. Yes you read this correctly. A mom by the name of Rebecca Sypin contacted Mattel and asked the toy company to consider designing a bald version of Barbie. Rebecca's daughter is battling leukemia and she started a Facebook campaign which is gaining TREMENDOUS support. She feels that children with cancer and those with other diseases that cause hair loss would identify with this doll, but also the doll would bring public awareness to the crisis. Just an aside which I want to share with you...... if you ask most parents who have a child with cancer about their thoughts on the advocacy and support for breast cancer or even mention Susan G. Komen, you may be surprised by the reaction you get. Many parents will outright tell you.... I hate pink! I am sure that may sound shocking to you, but I believe this feeling is completely grounded in the frustration that childhood cancer is NOT promoted and in many cases it is swept under the rug by pharmaceutical companies and even big advocacy groups. In particular, I am singling out the American Cancer Society (ACS) since they blogged about bald Barbie and absolutely INCENSED the childhood cancer community. Which I will share with you below.

If you want to read about Rebecca's campaign, please click on this link:

http://abclocal.go.com/kabc/story?section=news/local/los_angeles&id=8503355

Over the course of the last two days, a major debate has unfolded. Andrew Becker, a director of media relations for the American Cancer Society had this to say about bald Barbie, ... the Bald Barbie movement could “do more harm than good for kids and parents." In addition, though you can't read his initial posting since it has been SCRUBBED from the Internet, he was so bold to state that childhood cancer was rare and therefore calling attention to it with a doll will only breed fear. In fact, his comments were down right insensitive and misinformed especially to all of us who are in a battle or lost the battle to childhood cancer. Frankly if I were the American Cancer Society, I would be wondering if Mr. Becker was really cut out for his job. Several parents posted that they wanted him to be fired. You can read the controversy through this link:

http://abcnews.go.com/blogs/health/2012/01/18/american-cancer-society-blogger-apologizes-for-bald-barbie-flub/

Today, after being blasted out of the water for over a day from childhood cancer groups, Andrew Becker (from ACS) apologized. You can click on the link below to read his apology. The problem however is the damage is already done. In fact I would like to think Mr. Becker is an isolated case of cluelessness. But he is not and ironically he represents a major cancer group. However, those of us in the cancer world know that ACS raises a lot of money but most of it goes toward their administrative overhead instead of being allocated to meaningful treatments and outcomes.

http://acspressroom.wordpress.com/2012/01/13/bald-barbie-demand-is-an-over-reach/

However, after sifting through all of this for the last two days, a part of me sits and ponders what I think about the whole bald Barbie campaign and using social media in this way to get the word out. I definitely understand Rebecca's motivations and also what she is trying to do. I admire her ingenuity and creativity and yet at the same time it just makes me pause.


I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "I was sad to read that you were still feeling so badly on Sunday. I was grateful that you advocated for YOURSELF by calling the doctor and bless Peter for going to the pharmacy. Of course, Peter would respond that way. He is such a warm and caring man. As I've mentioned before, there are many qualities of Peter that remind me of my Dad. His response to you is one of them. What I feel is that Peter gives of himself in the important ways. He is able to connect with those that he cares about with a "listening heart." I appreciate the quotes that Charlie sends as they give me much to think about. The Tillich quote and the Valett one, the day before, stress the importance of not listening to some one's words, listen to their heart. I read the story and was reminded that our greatest learnings are those that we discover on our own. Thank you for sharing it with all of us. The playing of Dancing Queen at Zumba was beautiful. I'm glad that you were able to get to the class yesterday and thanks for your note last night. I listened to my body and went to bed early. It isn't something that I've been able to do lately. Caring for others beyond ourselves is a gift to those that we reach out to. The danger is that we don't care for ourselves as completely. This isn't a subtle comment about your care of Mattie. Peter and you went to the limit with Mattie and for good cause, he is and was your child. I know that it was very difficult to subject Mattie to all of his surgeries and treatments, only to have him not survive in the end, however, your words tell it all; " that was where the great meaning lies." Your courage and resolve to give him all of the experiences that you did before and during the 14 months of his illness are a lesson plan for parents. It left you with this big hole! Each time that you speak of another organization wanting to support the Foundation, I know that others are listening with their heart. It confirms the goodness that does exist within our world. I pray that you are feeling stronger today and send my love to you in all ways."
Posted by The Brown Family (DC) at 10:01 PM 0 comments

January 17, 2012

Tuesday, January 17, 2012

Tuesday, January 17, 2012 -- Mattie died 123 weeks ago today.

Tonight's picture was taken in January of 2009. After our trip to New York City, Mattie came home with this great Empire State Building erector set. Mattie loved his trip up to the 102nd observatory, and decided he wanted a replica of this fine building in our living room. This set may look cute, but it took Peter and Mattie HOURS to assemble it. By the way, this Empire State Building is still standing tall in Mattie's room today. Building and creating were our life savers while Mattie was battling cancer. Even on horrible days, and we had many of them, we all built together and created. I think it kept us sane, talking to each other, and helped us forget life for a while and enabled us to transfer our energies to something more manageable and pleasurable. This erector set will always remind me of our trip to New York City together.

Quote of the day: The first duty of love is to listen. ~ Paul Tillich


I went to zumba today, and thankfully felt up to doing that. I hadn't moved in days, and really needed to escape our home and clear my head. Zumba seems like the perfect solution to many of my stresses. When I walked into class today, the instructor, Jenny and I began chatting. There are several moms from Mattie's school in the class and when I explained to Jenny that I was surprised I never met this one mom in particular, this caused us to pause. Jenny explained last week that this particular mom has a fourth grader at Mattie's school. My automatic reaction last week was... that is why I do not know her because Mattie was in kindergarten. Jenny and I let that comment sit, but both of us have been reflecting on it since last week. Because this mom with the fourth grader is actually a mom in Mattie's grade. Mattie would have been in fourth grade this year, but in my world, Mattie will always be a kindergartner. For me life stopped there at age 6, and at times I assume this is true for all of Mattie's friends. Of course it isn't! I am the only one with arrested development here. Jenny began our class today with ABBA's Dancing Queen. She did not say anything out loud, but to me that was her tribute to Mattie. Since we both knew that was Mattie's favorite song used at the hospital for his physical therapy sessions.

My friend Charlie sent me this quote today along with an article on listening which I will share below with you. Charlie is a former student of mine and I have found over the years that my very talented and good students remain in contact with me. I am very lucky to have had such a wonderful group of students who educated me and taught me to be a solid professor, and I feel particularly honored that they reached out to me throughout Mattie's battle with cancer and now our grief. As many of my faithful readers know, Charlie wrote to me each and every day while Mattie was battling cancer. She continues to send me quotes and I store them in a database that I pull from when I need a quote to address my feelings or thoughts for the day.

Today was Ann's birthday. For those coming to this blog for the first time, Ann was our Team Mattie coordinator. For 14 months while Mattie battled cancer, and actually beyond as we were mourning intensely, she coordinated lunches and dinners for us.  I did not see the kitchen throughout Mattie's battle, and without the food from Team Mattie, I most likely wouldn't have eaten. Stopping to get food did not seem possible or even desirable to me. Actually caring for my needs was VERY low on my list because Mattie was our sole focus. I know Peter felt the same way! However, Ann's support goes beyond coordination of meals, in a nutshell we were basically united by cancer and death and therefore it provides for a rather unusual and at times complicated bond. We are different people and have very different needs and yet we are there for each other.  

In my opinion, birthdays should be celebrated and certainly Ann has done a great deal for us, so there would be no way such a day could pass without us acknowledging her. A group of six of us met up for lunch to celebrate the day. As I told Ann in jest, today is not about her. It is about the opportunity for those in her life to acknowledge her. The art of a good friendship, as tonight's quote eloquently points out, is to listen. Though a gathering may not have been Ann's choice, I am happy she listened to my feelings. In fact, one of the greatest gifts of love we can give another is time together and time to listen. Listening sounds easy, but it actually is a very challenging and difficult skill. In fact, if you are listening deeply to someone, you will find it exhausting.

My friend Charlie sent me the article below, and when I read it, it simply resonated with me. Which I imagine she knew it would. The article is written by a Native American woman, who reflects on how the art of listening was taught to her by her father. I actually found the life lessons her father taught her very moving because he did not sit down and chat with her about the art and skill of listening. Nor did he model the behavior. He simply asked her thought provoking questions and gave her the freedom to figure out the message on her own time. She made mistakes along the way, but she was persistent and continued to try to hear someone's heart and listen between the words. My wish for all of you is that you always have someone in your life like Paula (the author of the article) who just doesn't listen but listens to your heart and between your words. Because it is usually between our words, that great meaning lies.  

If You Really Pay Attention

--by Paula Underwood (Sep 21, 2009)


When I was a little bitty kiddy, about five, my Dad began a process … anytime somebody came and said something to us, my dad would say, "You remember what he said, honey girl?” I would tell my father what the person said until I got so good at it that I could repeat verbatim even long presentations of what the person had said.


And he did this all the time.

Finally, one day there was this old gentleman, Richard Thompson. I still remember his name, he lived across the street. And every time my Dad started to mow the lawn, there came Mr. Thompson. And so I would stand out there.
Dad says, “You might come and listen to this man, honey girl. He’s pretty interesting.” And so I listened to him, and then my dad would say, “What did you hear him say?” And I would tell him.
Well, eventually I was repeating all the stories he liked to share with my dad verbatim. I knew them all by heart.
And my Dad says, “You’re getting pretty good at that. But did you hear his heart?" And I thought, what? So I went around for days with my ear to people's chest trying to hear their hearts.
Finally my Dad created another learning situation for me by asking my mother to read an article from the newspaper. He says “Well, I guess if you want to understand that article, you have to read between the lines."

I thought, "Oh, read between the lines. Hear between the words."
So the next time I listened to Mr. Thompson’s stories, I tried to listen between the words. My Dad said, “I know you know his story, but did you hear his heart?” And I said, "Yes. He is very lonely and comes and shares his memories with you again and again because he’s asking you to keep him company in his memories."
It just came out of me. In other words, my heart echoed his heart.
And when you can listen at that level, then you can hear not only the people. If you really pay attention, you can hear what the Universe is saying.
--Paula Underwood, clan mother of the Turtle clan, Iroquois nation



Posted by The Brown Family (DC) at 10:36 PM 0 comments

January 16, 2012

Monday, January 16, 2012

Monday, January 16, 2012

Tonight's picture was taken in January of 2009. We were center stage at the Minskoff Theatre in New York City. Jenny, Mattie's outstanding art therapist, helped us obtain 6 special tickets to the Lion King and when the show was over, we got a back stage tour by the actress who played Nala (Simba's girlfriend in the Lion King). This actress was a lovely person and she tried very hard to engage Mattie! She had us pose for a picture, and she asked us to roar like a lion! Karen captured us in motion and as you can see Mattie thought the whole thing was funny!


Quote of the day: You give but little when you give of your possessions. It is when you give of yourself that you truly give. ~ Kahlil Gibran

Last night, I could tell my symptoms were not getting any better and resting wasn't helping. So at 9:30pm, I called my doctor's office and spoke to the on-call physician. For me that is always tricky because my physician understands my case, but that isn't true for all her colleagues. Luckily however, my physician's fellow was on call, and we had met each other before during my office visits. Needless to say, she prescribed more antibiotics and at 10pm, Peter was driving to CVS. My pain was intense enough for me to mobilize forces at 9:30pm on a Sunday, and I knew without new medication, there was no way I could have made it through the night with the pain I was in.

Thankfully the antibiotics are starting to work and I was able to keep my schedule today. I had a fundraising meeting scheduled today between the salon I go to and a cultural group in DC. Specifically the group is called, Italians in DC. This group is interested in promoting Mattie Miracle's cause and they were initially attracted to us because I am an Italian American. We have already scheduled the event for March 31, starting at 8pm. So as the plans unfold, I will certainly keep my readers informed.

Today's meeting seems to illustrate Gibran's quote. After all, these individuals are not giving me their possessions. In fact, they are giving me MUCH more than that! They are sharing their time, expertise, skills, and giving me access to both of their communities! To me this is an enormous gift because they are all busy professionals, but they are people who feel compelled to help others and to make a personal difference in this world. This was a very touching philosophy to hear and a philosophy that in my perspective makes the world more meaningful and a better place. It would be nice if we all had a village supporting us. But life doesn't always work out that way. Instead, I do believe villages (or support networks) are created one person at a time!
Posted by The Brown Family (DC) at 5:59 PM 0 comments

January 15, 2012

Sunday, January 15, 2012

Tonight's picture was taken in January of 2009. We took Mattie to New York City to start his experimental treatment of MTP at Memorial Sloan Kettering. Our experiences at Sloan Kettering were LESS than stellar. In fact, the majority of the staff we interacted with were surly and attitudinal and I am thankful we did not have to stay there for more than one week. I will explain more about this below. In this picture, Mattie was in the childlife playroom at Sloan. The playroom was HUGE, as big as a warehouse and just as noisy and chaotic. The blue plane behind Mattie, was made by him. Linda (Mattie's childlife specialist) contacted Sloan's childlife director and gave her a heads up that Mattie loved constructing with boxes. So she saved several for Mattie and gave them to him for his day in the hospital. As you can see, Mattie had a way with boxes and the Sloan staff seemed overwhelmed by Mattie's desire to create and be different. I do want you to know that we did take this blue plane in a taxi with us back to the hotel, and though we did not transport it back to DC, we took many pictures for Mattie to remember his creation!

Quote of the day: The human heart feels things the eyes cannot see, and knows what the mind cannot understand. ~ Robert Valett

Today was like living in the land of the lost. I never got out of bed today, that is how good I am feeling. I have spent the day watching Hallmark movies and thankfully having big windows in our bedroom, I can see the birds and see the traffic going by at the same time.

As I was selecting the picture for the blog tonight, I couldn't help but reflect upon our experiences at Sloan. Sloan Kettering was not a positive experience for us for so many reasons. It was at Sloan that the head of pediatric sarcomas let us know that there were NO known cases of children with multifocal osteosarcoma who survived treatment in the world! Therefore in his perspective he recommended palliative care and no aggressive treatment for Mattie. That was a monumental piece of information to receive, and I felt he was talking to me as if Mattie were a number and not a live human being. We then had the pleasure to meeting the head of orthopaedic surgery, who was equally as depressing and just as dysfunctional at communicating with families. This surgeon had an overinflated ego the size of a watermelon. He made us wait in an exam room with Mattie for over two hours. It was beyond insensitive. If that wasn't bad enough, when he graced us with his presence he started talking about very grave things in front of Mattie. At which point I literally stopped him and told him that I was going to bring Mattie outside to wait with my parents and Karen who were in the waiting room. When I got back into the room, the doctor literally looked at Peter and I for five minutes. Neither Peter nor I knew what to make out of this odd behavior. Mind you we were paying for this staring contest. Any case, after the ridiculously long silence, he then began shaking his head and said he did not know what to say other than he was sorry. He too recommended NO surgery and palliative care. By the time we finished with both of these doctors we felt mortally wounded and that we were given a death sentence. Interestingly enough neither doctor seemed concerned by this emotional bomb they laid upon us that day.

Naturally these two doctors were ultimately right, but here is the thing..... could we follow this advice and not try our hardest to give Mattie some quality of life? I recall after hearing this news, we contacted Georgetown Hospital and Mattie's oncologist. The difference between Sloan and Georgetown was like night and day. Georgetown believes in hope and treating every childhood cancer aggressively, and as I always say, Georgetown gave us 14 extra months with Mattie, time we may not have had otherwise. Was the battle worth it in the end? Some may disagree with our choices, but there is NO way I could have lived with myself if we did not try everything to save Mattie. All the decisions, each day of the cancer battle, all the ups and downs of the process, and Mattie's death remain within me. They are memories all trapped within my mind and body and this stress (though some would say this stress is no longer a real threat) simply builds up at times and makes me sick. 
Posted by The Brown Family (DC) at 6:58 PM 0 comments

January 14, 2012

Saturday, January 14, 2012

Saturday, January 14, 2012

Tonight's picture was taken in January of 2009. Mattie had a clinic visit at the hospital and while there Jenny and Jessie (his art therapists) saved him a box. Mattie LOVED constructing all sorts of objects from boxes. You would be amazed the boxes that the hospital staff saved for Mattie, and then even more amazed by how he transformed them! As you can see Mattie took an ordinary box and made his version of a bicycle helmet out of it! He was wearing it at home and I snapped a picture of him. But if you knew Mattie, then you can tell from his facial expression that he wasn't really happy or feeling well. He was looking at me with a very glassy smile, and yet despite how he was feeling on even the worst days, he always tried to connect with me in some way.

Quote of the day: There is something in humility that strangely exalts the heart. ~ St. Augustine

This morning I attended a local gymnastics meet. Ann's youngest daughter, Abigail, was competing and Ann invited me to go with her. Typically Abigail's meets are out of town and therefore I can't attend them. In fact the last one I remember going to with Abigail was in January of 2010. A lot has changed in two years both developmentally for Abbie and emotionally for me.

I never studied gymnastics nor do I watch it on TV. So I do not understand how the sport is scored and judged, but that is okay. Actually it may be even better that I don't have this knowledge, because I was able to sit back today and watch things for there sheer grace and beauty. What I found intriguing was that my eye focused upon those gymnasts who presented themselves more like a dancer. Some looked like dancers and moved with the same grace and beauty. Clearly there are two very different philosophies to gymnastics, you either train and reward skill and power, or you really train the kids on the grace and poise of the sport. It would be lovely to see these things go together and I imagine they do as the children mature. Nonetheless, grace and style capture my mind and heart. It is a treat to watch a child defy gravity with beauty and to see her facial expression to match.

It was evident to me that the girls performing really had humility and for the most part supported their team mates, which was lovely to see. It is through this humility that I think the hearts of those in the audience are captured. Nonetheless, I would have to say that the children managed the stress of the day better than most of the adults in the room. The level of tension and anxiety in the room were high and I came home and I asked Peter, what on earth is all of this for? This is when my cancer world collides with the real world, and things or priorities do not make sense.

I spent the rest of the day at home in bed. I haven't been feeling well all week, and the pain has culminated this weekend. So I just have to rest. I truly believe all my physical ailments are very tied to grief and stress and most likely a direct result of the 14 months of intense stress fighting Mattie's cancer. This is a stress that lies dormant within my body and seems to pop up at interesting times. Any case, I am signing off for tonight in hopes that tomorrow is a better day.

Posted by The Brown Family (DC) at 7:45 PM 0 comments

January 13, 2012

Friday, January 13, 2012

Friday, January 13, 2012

Tonight's picture was taken in January of 2009 in a hotel in New York City. We took Mattie to New York to begin his experimental treatment of MTP at Sloan Kettering. I will never forget the hotel, The Affinia Gardens, we stayed at! When we checked into the hotel, they took one look at Mattie and us in the lobby, and immediately upgraded us to a suite with a kitchen, two bedrooms, and two balconies. Some how we really needed that touch of kindness. Thankfully we had Karen and our former neighbors from Washington, DC in the city, and it made the fear of having to be in a hotel and starting a new therapy less isolating. However, on the day of our arrival into the hotel, we were handed a package that came in the mail for us. The package was from Linda, Mattie's Childlife Specialist. I distinctly remember the card within the package, because she wanted us to know that our Georgetown Hospital family were thinking of us while we were away. I found that SO touching. Mattie loved all the great items Linda sent him. Linda knew exactly the kinds of things that interested Mattie, and the LEGOs and puzzles were a hit.

Quote of the day: We're never so vulnerable than when we trust someone -- but paradoxically, if we can not trust, neither can we find love or joy. ~ Walter Anderson

I have been reflecting on our dinner out with Jerry and Nancy this week. As I mentioned in Wednesday's blog, Jerry and Nancy were music volunteers at the hospital, who we instantly related to and appreciated because of their kindness, healthy diversion from our cancer battle, and their positive impact on Mattie. While at dinner we began talking about what our experiences were like living at Georgetown Hospital. After all, Jerry and Nancy met in the hospital while Nancy's son and Jerry's niece were in the PICU. So we all know quite well from a personal standpoint what it feels like to live in a PICU.

I sometimes make the assumption that we all have the same experiences, especially when living under the same conditions. But of course that is NOT true. I feel as if Peter and I have lived out Anderson's quote, because as soon as Mattie was hospitalized in August of 2008, we were very vulnerable. We did not have our friends and family around us and EVERYTHING and EVERYONE seemed foreign to us. Actually I would even beg to say that living in a hospital environment is like moving to another country, because there are customs, traditions, values, and a whole order to how the place operates. It is safe to say that we were hospital outsiders in August of 2008. However, Peter and I had a similar philosophy.... if nurses were going to come into our room and work with Mattie, then we were going to get to know them personally. Actually I am not sure if this is my philosophy in life because of my profession or because this is who I am at the core. Getting connected to people is important to me, and it was never more important than in the PICU. We got to know who our nurses were dating, we learned about their husbands, their children, their homes, their pets, their hobbies, their vacations, and so much more. Things you would most likely share with your family and friends. So while we were adjusting to their system and culture, they were also adjusting and getting accustomed to ours! I made the assumption that ALL pediatric families related to their nurses the same way we did. But as I was talking to Jerry and Nancy, they just looked at me in amazement. They were looking because they never forged this type of connection with their nurses and they went on further to say that they really don't see this happening with other patients they observe and work with.

I am not sure how I feel about learning this news. About our uniqueness! But I guess a part of me isn't surprised. I always felt that Mattie's nurses bonded with us and they were no longer just our healthcare workers, but they became part of our medical family fighting osteosarcoma with us. Mattie's nurses looked out for us, they advocated for us, and it wasn't unusual for me to receive hugs, a back rub, and hot tea from them! All extraordinary and compassionate women. In addition, my hypothesis is that Mattie's experience with some of them was so challenging that several of them either left the unit or even the hospital to work somewhere else. Naturally no one will ever confirm that for me, but there seemed to be a mass exodus of people after Mattie died.

So as Anderson's quote implies, by being vulnerable, honest, and sharing our feelings, fears, tears, and laughter, we developed a great deal of trust in one another. Through this trust.... love, hope, and joy were achieved. Who knew such things were even possible in a PICU. However, as we admitted to Jerry and Nancy, when Mattie died on September 8, 2009, we lost a huge part of our life that day, but when we had to leave our medical family behind and head home, it made the loss seem almost impossible. We entered the hospital as three people, and left with only two! In addition, the people we turned to for 14 months during Mattie's cancer battle, were no longer part of our daily community. Cancer is all about loss, and the loss does not only occur at the time of diagnosis and perhaps death. It happens at every stage of the treatment and even recovery process.

Today was another whirlwind day with a six hour long license board meeting and ethics violation trial. So I am wiped out tonight. However, I would like to share one more commentary from the undergraduate reflection papers. I found this one quite insightful. 

"To be completely honest, over the course of my Georgetown career, there have been few classes that I have looked back and gone "that was highly impactful to who I am as a person." This class has been able to have this effect on me mainly because of our involvement in Mattie Miracle. It has been an unbelievable experience and one that I hope to stay involved with throughout the following years. Throughout my life, I have been fortunate enough to be able to experience working for my family's foundation that gives away money each year. This is an extremely rewarding experience but it is not the same as what we did with Mattie Miracle. This project has been hands on, and we have been able to see the actual contributions and suggestions we made come to fruition. The event throughout this process that really stuck out the most was helping push the snack cart throughout the pediatric units. This was an unbelievable experience and really opened up our eyes when we did it. The thing that stood out about it was the extremes. There were the really young kids, who were in a crib and had so many things hooked up to them, it was devastating. Then on the other extreme, were the older kids who looked like they were more towards our age. This was something that we could relate to. But what it really did was put everything in perspective. We go through our days complaining about little things like a homework assignment or paper, while in reality we have an amazing opportunity to go to this amazing school while we all have relatively good health. We worry about things that are so minuscule in comparison to what these kids are going through that when you see their lives it really gives you a deep appreciation for what you have in your own life. In addition, when we pushed the cart around, we got to see the faces of the parents as they were actually going through the process. Vicki and Peter have already gone through it, as they talked to us in class. That is not to take away from anything they have been through, but they are not in the process at the current moment like these people. Seeing their faces and the pain that was in these parents as they watched their children go through this extremely tough process was unbelievably hard to see." 
Posted by The Brown Family (DC) at 8:46 PM 0 comments

January 12, 2012

Thursday, January 12, 2012

Thursday, January 12, 2012


Tonight's picture was taken in January of 2009. Mattie was home between hospital treatments, and what you maybe able to see in the background of this picture was Mattie's hospital bed in our living room. Cancer transformed every aspect of our lives. Our home included. Every corner of it looked like a hospital with medical supplies, IV poles, commodes, a wheelchair, and as time evolved oxygen tanks and pain pumps. Memories that will always linger within me. I captured a tender moment between Peter and Mattie here and from Mattie's bright smile it was evident who was taking the picture. Mattie reserved a special smile and look for me. Though cancer ravaged his body, his smile and beautiful eyes remained unchanged.  


Quote of the day: The greatest test of courage on earth is to bear defeat without losing heart. ~ Robert G. Ingersoll

Ingersoll's quote couldn't be more on target. How does one handle defeat without losing heart? It is some times hard not to lose heart especially when I reflect on the large defeat of losing Mattie to osteosarcoma. Yet we try to take it one day at a time and attempt to find courage in order to continue the journey without Mattie.

I spent a great deal of the morning balancing several different Foundation items and projects. Though I do not like multitasking, I can do this quite well. I had years of practice while pursuing an education, working, and then balancing Mattie. Yet post-cancer, I sometimes have a shorter fuse, and juggling different things only brings upon further stress and physical symptoms.

In the midst of this busy day, I had the wonderful opportunity to meet my friend Margaret for lunch. As my faithful readers know, Margaret was Mattie's first preschool teacher. We met Margaret in 2005, and now seven years later, we are still friends. In fact, I loved Margaret as a teacher and a person from the first day I met her. I sensed she would be the right teacher for Mattie and my mom instincts were correct. Mattie grew and developed exponentially in her classroom and at the same time she provided me with great support, insights, and feedback. Over time our friendship grew and we only became closer. When we are together time simply slips by. We have the art of conversation, connecting, and sharing with one another and today was no different. Though Mattie is not physically with me, the friendships he made and left me with are profound. Margaret and I often reflect on Mattie's first year at Resurrection Children's Center. Because it was within that year, or should I say during the first day of school, that Mattie found what we call his soul mate. Mattie and his friend Zachary were soul friends. They understood each other, appreciated each other, and were fiercely loyal! They had an unusual friendship, one that made even adults pause, because it was intense and yet so natural.

After my lunch with Margaret, I went to Mattie's school to meet up with Donna. Donna has become my friend and is one of the kindergarten teachers at Mattie's school. Some of you may recall that I did a Matisse and Picasso lecture series in her class last year. Donna has invited me back to her class this year, and I will give my three part lecture series in April to her students. However, what is very evident from seeing Margaret and Donna today is I fit in very well with teachers. We talk the same talk and we just get the challenges of teaching. As Donna and I walked our way to her classroom, along the way, we chatted with Bob (the head of Mattie's lower school, and also known to my faithful readers as the Magic Man), Leslie (Mattie's kindergarten teacher), several other teachers, and even a parent and her middle school child. Donna and I connected for several hours and we were not talking about the lecture series. We were simply talking about life, the Foundation, and Mattie. One of the topics we discussed was the art of storytelling. This is a form of education that I absolutely LOVE and I believe it can be incorporated into the classroom at all the developmental stages. I always used it at the college and graduate school levels, but I also know young children and children of all ages gravitate to it. I was expressing my concern to the teachers today about this new generation. We are so immersed into technology and SO focused upon grades that we are not teaching our children the core and fundamental values of life. Which are the life skills of listening, the art of conversation, and being able to emote and verbally express emotion! Sounds simple, but you would be surprised how challenging it is to have eye contact and conversation with children in today's day and age. We have become technology driven, which can be a beautiful tool, but also a curse. Storytelling captures one's attention and imagination. After all as you are process what you are hearing (which is also an important life skill), you are developing a picture that coincides with what you are hearing. In addition storytelling passes on cultural views and traditions and it also teaches children about non-verbal mannerisms and expressions. But at the heart of the matter, storytelling evokes feelings. Feelings that can be discussed and it is through these deeper conversations much more can be learned on ANY subject matter. Needless to say, we had another stimulating afternoon of conversation!

I would like to share another commentary for one of the undergraduate reflection papers. "The work we performed for Mattie Miracle and more importantly the way we impacted the children's lives was so special to me. We got thank you emails from parents telling us that their kids cannot stop talking about how much fun they had at one of our practices or at the Georgetown Basketball game. This made all of the work worth it because not only did we get to see the smiles we were putting on the kids' faces but the parents were so appreciative of our actions as well. Interacting with the kids and going up to the pediatric ward in the Lombardi Cancer Center made me realize how lucky I am and how much I have. I realized that I need to do more to help out people who are less fortunate than me more often. I am blessed with so much and I need to start giving more. Overall I enjoyed working with Mattie Miracle. It taught me a lot about who I am and how much a difference just a few college kids can actually make."

I would like to end tonight's posting with a snippet of a song I heard on the radio today. It is brand new, so the full song isn't on the Internet yet. Nonetheless, when I heard this song, it made me stop and want to hear ALL of it. I hope you listen to it, because it should give all of us PAUSE and re-evaluate our priorities. For me, cancer did that for me, I am happy I did not miss Mattie's seven years of his life, because I would never have had the chance to make up for that lost time. I introduce you to Phil Vassar's song entitled, Don't Miss Your Life!


Posted by The Brown Family (DC) at 10:08 PM 0 comments

January 11, 2012

Wednesday, January 11, 2012

Wednesday, January 11, 2012

Tonight's picture was taken in January of 2009. We took Mattie to New York City for the second time, to begin an experimental treatment at Sloan Kettering. The treatment was started at Sloan and then through a compassionate release program, the remaining dosages were given through Georgetown Hospital. Before Mattie began treatment, we took him to some of the wonderful sights of NYC. Though it was cold out, Mattie enjoyed the boat ride and passing by the Statue of Liberty. Caring for a child with a major disability provides great challenges, however, trying to do this in NYC was double challenging for me. Getting Mattie in and out of taxis was a feat and just moving at the quick and lively pace of NYC made life with cancer much harder. However, Peter and I worked hard at sheltering Mattie from these stressors and we particularly were aggressive about protecting his feelings especially when people looked at him like either he was a physical misfit or worse with great pity.

Quote of the day: As human beings, our greatness lies not so much in being able to remake the world as in being able to remake ourselves. ~ Mahatma Gandhi

Gandhi's quote is quite profound. I think it takes great effort to remake one's self. First that alone requires one to develop introspection into one's life and how one is being with the world, but second it then requires energy, will power, courage, and commitment to achieve this make over. Self change is hard just in general. If you doubt this just ask anyone who is addicted to a substance or activity, or ask someone who is trying to lose weight, or even ask a mom or dad who is having trouble parenting a child. Yet through self change or by remaking ourselves, it is miraculous to see how others (or the world) around us also change.

I know for me, having to remake myself after Mattie's death has been challenging, stressful, and at times disheartening. Mainly I guess because I did not ask for this change. I spent a great deal of time getting my education and working in the mental health field, and yet how I saw using these experiences and credentials no longer interest me. I have been forced to re-evaluate myself professionally as well as personally, and I believe Mattie's death has sometimes made me pause and ask why bother?

It was another grey and rainy day in Washington, DC. I met up for lunch with my friend Tina and we had a very stimulating conversation about fundraising ideas for Mattie Miracle. Over the course of the last month or so, she has been generating a list of ideas for me to consider. I appreciate this brainstorming because unfortunately right now the Foundation does not have a staff. Peter and I are the staff and at times it becomes a juggling act to try to create and generate ideas, while at the same time running programs and maintaining the administrative side of running the Foundation. I am always open to new ideas and certainly new connections and possibilities. It is through new connections  that the 5% Whole Foods day came to our attention. In the midst of talking ,Tina and I had the good fortune of being treated to homemade chicken soup at a local restaurant. It was the perfect meal for a damp and cold day. In a way, like other people talk about their children or work, my equivalent is talking about the Foundation. The Foundation is my job, but it is also requires nurturing. I appreciate Tina being able to see that.

Tonight, Peter and I had dinner with Jerry and Nancy. Our favorite music volunteers from the Hospital. We met them during our first week at Georgetown Hospital. Mattie's first week of chemotherapy was scary and stressful for all of us, yet when Jerry and Nancy came into our room one evening and started playing their keyboard and singing, we all forgot our problems! Mattie loved the music and as time passed, Jerry and Nancy created a Name that Tune game for Mattie which he loved. The cute part was that Jerry wanted Mattie to feel good about his singing and his participation, so Jerry would email me ahead of time to consult on the songs he would select for the game. He wanted to make sure whatever he played that Mattie actually knew the song and would be able to win Name that tune! So in essence we met this talented twosome in 2008, and we have been friends who periodically get together every other month or so for dinner. Another special connection in our lives thanks to Mattie. Several of my readers have asked me about Jerry and Nancy and I do want you to know that Jerry and Nancy are just friends, they are not married. They met and supported each other at the hospital when Nancy's son and Jerry's niece were undergoing cancer treatment. Cancer united them and once their family members went into remission, they wanted to give back to the hospital and therefore have been musical volunteers for several years. A rather touching story!

I would like to end tonight's posting with a passage from one of the undergraduate student reflection papers, "The Mattie Miracle Cancer Foundation project was the first time in my Georgetown career where I actually applied myself in a very positive way. At the start of the project, I was very excited and nervous at the same time. I didn't know how everything was going to turn out. When Vicki and Peter came to speak with us, I was very nervous when thinking of the semester long project. As they showed us the presentation the day they came to speak, things got very emotional and the entire room was just in complete silence. Actually going to the Lombardi Cancer Center and seeing the kids there made me grateful for the life I have. I didn't realize how good I had it. After complaining about this and that, it was a real humbling experience to go over to the hospital and see everything that was going on. This realization allowed me to really put my all into this project. Doing something for a greater cause really brings people together. Before this, I had never experienced anything like this at Georgetown before. I am grateful for this wonderful opportunity."
Posted by The Brown Family (DC) at 6:56 PM 0 comments

January 10, 2012

Tuesday, January 10, 2012

Tuesday, January 10, 2012 -- Mattie died 122 weeks ago today.

Tonight's picture was taken in April of 2009. Mattie was in the Lombardi Clinic, and if you knew Mattie, then you know that when he was in clinic he was going to find Jenny and Jessie, his art therapists. Jenny and Jessie are very talented professionals who unfortunately no longer work at Georgetown. For us, they made the clinic special and they knew how to engage Mattie both artistically, mentally, and socially. A rare gift! This cutie sitting next to Mattie is Maya. Mattie and Maya are the same age and Maya was the ONLY friend Mattie's age that he made at the hospital. I can recall the day they met in fact. Mattie, Maya, and a few other kids were sitting around the art table creating independently. Maya started talking about how she hated to get pricked with a needle. She expressed herself very well and shared her feelings. To my surprise, Mattie out of no where piped up and told her that he could relate to her and her feelings. That was it, that conversation cemented their friendship. Maya is very bright, humorous, creative, and a live wire. She was an excellent match for Mattie. In front of them, you can see a painting of a rainbow they painted together. This painting still exists and it is a ceiling tile within the Lombardi Clinic. I am sure many people pass under this rainbow each day, but to me this rainbow is special. It signifies the time when Mattie was alive and it captures the boldness and beauty of a special friendship.  

Quote of the day: A bit of fragrance always clings to the hand that gives you roses. ~ Chinese Proverb

My friend Charlie sent me this quote today, and I simply love it. I love it because the visualization it conjures up is beautiful. In essence when we give someone a gift, not just roses, a part of that gift remains on our hands. Our hands are responsible for sharing and spreading happiness and these emotions do stay with us. They get absorbed in our skin, not unlike lotion. I know I feel this way when I give someone I care about a gift, but this Chinese proverb captures that feeling in a very meaningful and visually pleasing manner.

Today was my first day back to zumba since I returned home from our trip. It is always hard to get motivated to start exercising again, but as always the class doesn't disappoint me. By the time the hour was up, I felt better physically and mentally.

As today is a Tuesday which marks the 122 week of Mattie's death, heading back to Georgetown Hospital was not an easy endeavor. But I attended the parent advisory board meeting tonight. Mind you I was just on campus yesterday too! To some extent I have to compartmentalize my emotions when I enter the hospital, otherwise I couldn't muster the energy to make it to the pediatric unit. The meetings are held in the childlife playroom, a playroom that was VERY significant to Mattie. To many of the parents sitting in the meeting, they never sat in this playroom. When their children were being treated at the hospital the playroom hadn't been built yet. But for me each corner of the playroom holds memories.

One of the items we discussed tonight was the annual medical grand rounds in which parents present to doctors and nurses about family centered care and their experiences at the hospital. Some of my faithful readers may recall that I testified at the medical grand rounds in May of 2011. I have been asked to speak again this year on April 20. However, I couldn't hold my tongue and asked what we were planning on doing to get physicians to actually attend this event. The chief of the PICU sits on our advisory board and I said it was "appalling" that parents should prepare and come to this event and then doctors do not show up. Certainly I am smart enough to know that one can't demand an attending physician to show up anywhere, but certainly medical school students can be mandated to do anything. To me medical students need to hear from parents directly and in many ways we are their paying customers and our feedback should be important to them. It was discussed that nurses were in attendance in 2011 and that nurses would be invited again this year. With that, again, I stopped the conversation and said I am not surprised the nurses attend, however, they are not the ones who need to be exposed to psychosocial content and the nature of parents' concerns, it is doctors. Parents all around me at the meeting were nodding their heads in agreement, and it is hard to challenge what I am saying, especially if you lived within a hospital setting. I lived in a hospital for 14 months and I can count on one hand the medical doctors who truly understood, embraced, and practiced family centered care. So it is my hope that the medical profession will not only talk the talk, but walk the walk. The walk has to start in MED SCHOOL! Whether physicians want to accept it or not, patients are taking a much more active role in their health care and the care of their family, and therefore instead of this being viewed as a hindrance or obstacle, it should be viewed as an added benefit.

After the meeting, I had the wonderful opportunity to talk to one of the hospital administrators who has become a friend. He let me know on stressful and challenging days, he stops and reads Mattie's blog. That the blog gives him perspective. I was deeply touched by his feelings and thoughts. On the drive home I looked up into the sky and there was a glowing and very full Mattie Moon guiding me home.

As promised, I would like to end tonight's posting with two of the commentaries I have received from the Fall undergraduate business class. As I continue to read these reflection papers, I realize introducing these students to childhood cancer was a profound experience for them.

From a female undergraduate, "There were many factors at play to consider when evaluating how the project has affected me as a student of creativity, as a group member, and as a human being. This project has been unlike any I have done in the business school or at Georgetown in general. It is a question of being human at our very core, suffering and accompanying each other as best we can. Vicki and Peter are incredible people and I think that there is no other foundation that we could have worked for that would have provided such an experience of mutual gratitude. I felt like they really opened their hearts towards us and as much as we helped their organization, they helped us back. Vicki was constantly available through email, and both of them actually took the time to come to our event at the hospital."

From a male undergraduate, "The project itself is very humbling. I'm known for being very vocal during everyday affairs with things that bother or annoy me. However, walking over to the hospital and seeing what the children go through is a very humbling experience. When you realize how sick some of them are and what they are going through, suddenly the problems in your life don't seem so bad. I won't pretend that it isn't human nature to find something to complain about during the day, but at least for those moments, you realize just how much easier your life is than any of the children's lives at the hospital." 

Posted by The Brown Family (DC) at 9:54 PM 0 comments

January 9, 2012

Monday, January 9, 2012

Monday, January 9, 2012

Tonight's picture was taken in February of 2009. Mattie was on his way to the Lombardi Clinic for treatment. Next to Mattie and I was Jenny, one of Mattie's incredible art therapists. What you may not be able to tell from this picture was Mattie was in a hallway that ramped down to the Lombardi Center atrium. When Mattie was feeling in the mood, he loved going down this ramp, as if he were on a roller coaster speeding down hill. Naturally Jenny nor I ever let his wheelchair completely go from our hands, but we definitely gave him the opportunity to feel like he was in a roller coaster seat speeding down the ramp. Notice a hospital employee in the background watching our antics. With Mattie, there were a lot of antics and those who knew him appreciated that side of him. In that respect Mattie made cancer easier for us because he had many interests, a good sense of humor, and knew how to captivate the attention of others.


Quote of the day: It is well to be prepared for life as it is, but it is better to be prepared to make life better than it is. ~ Sargent Shriver

I began my day with a beautiful text message from Toni, Brandon's mom. As my faithful readers know, Brandon was Mattie's big buddy. Mattie let VERY few people into his life while he was battling cancer. In fact, I can count on one hand the friends Mattie made at the hospital who were either ill or had cancer. The list was short, it was Brandon, Jocelyn, and Maya. Mattie related to Brandon, and I deeply believe he felt Brandon understood and appreciated him. Brandon and Mattie battled cancer together and in the process we came to love him and his family. Toni and I fortunately had each other for support and both of us express ourselves passionately, so we appreciated each other right away. Toni knew Peter and I were headed back to campus today and she understands how challenging returning to the scene of the crime is. Toni gets it because she survived days and nights within the hospital and saw the horror that cancer produces in your child and within yourself. To some extent I do not think others can possibly grasp the full extent of the trauma of returning to the hospital, if you haven't lived through the process yourself. Toni wished us well today and wanted me to know the impact Mattie has made on Brandon's life! Her text message brought an immediate smile to my day and in a way we felt less alone as we journeyed back to campus.

Peter's former business school professor Bob Bies (http://explore.georgetown.edu/people/biesr/?PageTemplateID=319) invited us back to Georgetown this semester to work with his MBA students. We are their community based learning project. Which means we are their business client and as such they need to learn and hear about the Foundation and then utilize their knowledge to help us develop strategies that will enable us to grow more productively and creatively.

Many of you many recall we worked with Bob's undergraduates in the Fall. What I love about Bob's teaching style is he operationalizes Shriver's quote. He challenges students "to make life better than it is." Throughout the Fall semester, Peter and I wondered whether we were making an impact on the young minds we interacted with in Bob's class. Today, Bob handed us copies of his undergraduate students' process papers. Each student in the class wrote a one to two page paper about their experience interacting with us and working for Mattie Miracle. I haven't read through them all, but what I am reading is amazing. If we had any doubt whether we impacted them or got our message across, these papers squelch any of these concerns. Over the course of this week, I will share with you some of the writings we received today. This is definitely one of the aspects of teaching I miss. I always learned deeply from my students.

As we were driving to the Georgetown campus today I had a bag of what I call "Mattie props" in the back seat of the car. These props are all meaningful toys or items of Mattie's that I bring because I feel it will help personalize the beauty of our son. We work very hard to make him real for the students and to let them understand that this Foundation is based on the memory of a once vibrant, healthy, dynamic, and creative little boy. All the props were secured nicely in the back seat, and yet while driving all of a sudden one of Mattie's toys started to make noise. Mattie's Thomas the Tank engine just seemed to miraculously turn itself on and its wheels were moving. Both Peter and I took that as a sign. A sign that I shared with the students at the end of class. I told them that Mattie was here with us today and approved of my selection to bring Thomas into the classroom and to share his life story with them. Before our presentation began, I took a picture of the props. On the desk was Sunshine (Mattie's yellow boa constrictor), Thomas the Tank engine, Scooby Doo, a Lego yellow grater (for road building), a picture of Mattie's Mr. Sun painting with a butterfly propped on top, and on the floor was an excavator, Mac from the movie Cars, Lightning McQueen, Wall-E, and naturally a rubber ROACH! 


I snapped a picture of Peter today presenting to the Imagination and Creativity class. There were 46 students in the class, an ironic number, since 46 children a day are diagnosed with cancer. A message we closed our lecture with, because we wanted them to know they were lucky that they were healthy and able to learn, because while this was happening, children are being told they have cancer. It is profound to think that if we congregated all the children diagnosed with cancer today, this would fill their 46 seats in this classroom!

Perhaps I was just more observant or the dynamics in today's class were different. But what the undergraduates said to us in words, I could see on the faces and non-verbals of the MBA students before us. Like the undergraduate students, the MBA students also asked good questions and were engaged, but I sensed that our story was overwhelming for them to hear. I shall see if I am right when I read their reflection papers at the end of the semester, but I told Peter at dinner that I read the faces and some were just overwhelmed. I actually do not feel badly about that, mainly because when students are overwhelmed great progress can be made. To some extent cancer and the death of a child should make them feel uneasy and if it did not then I would have thought we did not do our jobs today. Childhood cancer needs to evoke emotion, because it is through this emotion that passion for change and the conviction to think differently and innovatively are inspired.  

Just like last semester, we went through a PowerPoint slide presentation with the students and also showed them a "remember me" video of Mattie which is posted to this blog. The video instantly moved many of the students and some of them were crying and sniffling. In fact, it takes super human strength for Peter and I to be in the same room with this video and then be asked to speak as soon as the lights come back on. In our PowerPoint presentation there is a slide that addresses the psychosocial impact of cancer. However, before discussing the content of that slide, I had the students pause and reflect on how their lives would change if I told each and every one of them that they were diagnosed with osteosarcoma today. With the undergraduates I basically went through this visualization exercise with them and gave them the responses. Today I paused and asked the class to generate the responses for themselves. I got about four of five students who bravely stated their feelings and each one was very profound and right on target. For example, the first student to respond said to me if he were diagnosed he would be upset about how his life was going to change. That he wouldn't be able to come to class and better yet that getting an MBA may not even be a priority any more. Bravo! Indeed, they got it right away, because cancer demolishes plans and one's hope for the future. Instead, the only thing that matters during the battle are life and death decisions and factors.  

As we finished class today, several students came up to talk with us. However, we all immediately noticed it was snowing. Bob took that as another sign from Mattie, and he maybe right. This was what things looked like as we were driving home!
I would like to end tonight's posting with two paragraphs from an undergraduate reflection paper. It is my hope that as I continue to share these comments, you will see the effect we had on these students. This male student wrote, "In high school, I volunteered at Ronald McDonald House charities. There, I frequently met families of pediatric cancer patients. Going into this consultant project with the Mattie Miracle Cancer Foundation, I expected Vicki and Peter's story to be similar to the ones I had heard in the past. I could not have been more wrong. I was completely blown away by their emotion as well as their can-do attitude. It must have been extremely tough for them to start a Foundation that remembers Mattie's life and also looks to raise money for the cause for Mattie's death. A big reason why I was so excited and passionate about working with my team on this project was because I felt an emotional connection. Knowing that my work was benefiting the lives of others in a very tangible way not only made me want to help out more, but also encouraged me to tell my friends and family about the Mattie Miracle cause."
Posted by The Brown Family (DC) at 8:57 PM 0 comments
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