Mattie Miracle 10th Anniversary Walk was an $119,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are 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 stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief 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 us, and most importantly thank you for keeping Mattie's memory alive.


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



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

February 4, 2012

Saturday, February 4, 2012

Saturday, February 4, 2012

Tonight's picture was taken in February of 2009 right outside Mattie's hospital room door. As my faithful readers know, hospital admissions and discharges were a nightmare for us. Mainly because we had a ton of items to transport with us. After all we had to live in the hospital for days and weeks on end. So that meant we needed clothes, laundry detergent, plates and utensils, Mattie's favorite toys, videos, and snack foods just to name a few. With each hospital admission we also accumulated more things as well, since Mattie would get gifts from friends and supporters, and from childlife in the hospital. Which is why, after Mattie's death our home looked like a warehouse. With each discharge I would bring all our bins and items home and naturally things were piling up all around us because I was unable to get to cleaning out and organizing things. I had no time, because when I was home I was a full time nurse, doctor, mom, and play companion. After Mattie's death, one of the worst things we had to contend with was cleaning out our home. I did not deal with this for over a year. In fact, it was last February, that I began going through piles and donating items. I am showing you this picture tonight because yesterday's visit to the hospital triggered a memory. The memory was the importance to me of decorating Mattie's room. With each admission, out came my boxes of decorations. I had things hanging from the ceiling, posted on the walls, the door, and anything that I deemed needed cheering up. Which was literally the entire space. As you can see, Mattie was posing in front of his artwork, that I taped to his door. I felt that those who entered the room needed to see these things as much as I needed to post them. I wanted them to immediately see that this was our home, and just like one's home you put your own personal touches on it. In addition, the art and decorations just humanized the space. It wasn't easy bringing in the decorations, decorating the room, or disassembling the room with each discharge. But I did it!

Quote of the day: Do not let what you cannot do interfere with what you can do.  ~ John Woode

I simply love this quote! We all have our own limitations, yet the key is to focus upon what we can and do bring to our job, family, and life. Peter and I began our day with a conference call with one of the student groups from Georgetown University who is working with us this semester. It was interesting to hear this group's ideas about our website and strategies they would like to research to enhance our web presence.

Despite the greyness and rain, Peter and I took a walk in the city and went out to lunch. One of my friends gave me a gift card to a restaurant in Georgetown pretty soon after Mattie died. I had never used it, and today it seemed to motivate me to get out of our of home and try something different.

One of the highlights of my day was listening to a voice message that Heidi's daughter, Isabel, left for me. Isabel is part of the Girl Scout Troop I have been working with, and Isabel was inspired by Lauren's Bows for Hope and would like to create her own art pieces that can be sold at our Foundation Walk in May. Pieces that can be sold to generate funds for the Foundation! I really welcome this kind of creativity and commitment, because what I have determined is that the vendors which bring in income at our Walk are those run by teens. Children and adults who attend the Walk are more eager to support homemade crafts than manufactured products they can get else where. That was an important lesson I learned over the last two years. So I am thrilled that Isabel heard my desire to get kids her age more involved with the Foundation and generated a wonderful idea to accomplish this!

I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "The blog stimulated me to remember that people respond to kindness more than disappointment. It took great courage for you to step into Cory's room yesterday. Somehow I believe that Mattie wanted you to do this so that you would have a new experience with this room. I believe that he doesn't want you to remember it only as the room in which he died. He wants you to associate it with life as well. That's where Cory comes in. I loved his smile and I smiled at his red Mohawk. I wonder if he has had it red for a long time or just yesterday for Wear Red Day. You, like Mattie, wore a smile even though you were having such tender feelings about this room. I noticed your eyes and was reminded of your description of Mattie, who smiled when he was in pain. Brava to you for going through the process of obtaining 8 CEU's for professionals attending the Symposium. I know that takes a lot of preparation. It added another dimension to encourage professionals to take time from their days to participate in this worthwhile and important session. I am so proud of you for bringing another level of professionalism to the Foundation. I wish that I was able to experience you in your classroom and realize that I am with each description and venture that you undertake. When you write about your experiences, you give such detail and depth to the undertaking. It shows your devotion to what you believe in. Your attention to detail is inspiring!" 

February 3, 2012

Friday, February 3, 2012

Friday, February 3, 2012

Tonight's picture was taken in February of 2009 in the Childlife Playroom of the Hospital. Mattie spent many a day in this playroom when he was well. Sitting next to Mattie was Sally, the storybook lady. Sally is quite a gifted actress who has her own production company. Yet would volunteer her time in the hospital. We LOVED the days Sally came to the unit. We acted out all sorts of plays and things with her, and she took a liking to Mattie. She appreciated him and was able to bring him out of his shell on bad days. Each hospital visit, Sally came dressed as a particular part or theme, to help give flavor to the story she was sharing with us. However, Sally didn't just read a story, she made all of us ACT it out. I typically played the witch, something I perfected over the course of 14 months being locked up in a hospital. In this picture, Sally was celebrating African American history month, and she introduced Mattie to the power and symbol of the drum.

Quote of the day: Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~ Leo F. Buscaglia

Today we lived out Buscaglia's quote. I joined forces with Girl Scout Troop 3989 at Georgetown University Hospital and we delivered 100 Build A Bears to the Childlife Department. As my faithful readers know, last Friday, I went to the mall and met this troop for the first time and got to participate in their bear assembly process. However, that was only part one of their service hours to Mattie Miracle. The second part happened today. To me the act of service learning actually means participating in HELPING those you plan on serving. So making the bears was indeed important, but it would only have purpose and meaning if the girls then visited the hospital and got to see the units and delivered some of the bears to the children. I believe it is through human interaction and feedback that our quest and passion for service learning gets nurtured and further inspired.



Our wonderful friend Tim, who is an Associate, Administrator at Georgetown University Hospital came by to visit with the girls today and congratulated them on their service and contribution to the Hospital. When I entered the hospital today, I had a ton of Mattie's stuff with me and felt like a wilted flower. Tim immediately grabbed the Mattie bag and carried it throughout the hospital for me. That kind gesture meant a lot to me, as did his presence today.

As with all my Foundation presentations, I brought Mattie items with me. To me it is important for others who interact with us to know that Mattie was a real boy, who led a profound life in seven short years. He is our constant motivation for what we do and guides us on our mission.

My friend and Mattie supporter, Tanja, journeyed with me today. Unlike others in this childlife playroom, Tanja understands the ramifications of that room (since she played with Mattie in it) and just the simple presence of being in the unit. Tanja took a picture of the troop leaders with us. From left to right are: Pam, Trevor, Vicki, Tim, Katie (childlife specialist), Heidi, and Ellen.

The Girl Scouts had a half day of school today, and when they arrived at the Hospital, Linda (Mattie's childlife specialist) allowed us to close down the playroom for several hours so the girls could have lunch, I could do a presentation, and then we could assemble the distribution of bears. I have done many Mattie and Foundation presentations but ONLY to young adults and adults. Today was my first experience presenting to teens. I walked a fine line between being honest and graphic and trying to temper the information so as to not scare the girls. In my adult presentations, I am much more candid about the horror of cancer and the devastating on a family. I do think with this age group things do get absorbed but thoughts and feelings aren't always easily shared. However, in time I believe the pictures they saw, the information shared, and video of Mattie will get absorbed and sink in.


I introduced the girls today to Lauren Chelenza, the founder of Bows for Hope. As my readers know, Lauren is a 13 year old Osteosarcoma cancer survivor, who battled cancer in Pennsylvania during the same time as Mattie. When Mattie died, I think Lauren felt compelled to do something with this loss and she used her creativity to basically create her own non-profit whose mission is to financially support Mattie Miracle. I am in love with Lauren as a person and feel she is an outstanding role model for young girls. The Girl Scouts were very interested in Lauren, in how she was doing, and they also wanted to know about her mobility and prosthetic. Through Lauren these girls learned about repiphysis technology. Lauren was kind enough to make every girl today a Bow for Hope (www.bowsforhope.com). The girls were thrilled and we took a group picture with each of them wearing Lauren's bows. The irony is I did not have to encourage them to wear the bows, they naturally gravitated to the colors and wanted to put them on. Brava Lauren!


I would like to share some pictures I took of the girls walking around the pediatric units today. I entitle this one, "en route" to the transplant unit!

Katie, a childlife specialist, escorted us around the floor today and got consents from five families for us to take pictures. Which I appreciated! This is the second event Katie has participated with us on, and we value her support and enthusiasm. Featured here is Mathias and his mom. When we got to Mathias' room he was lying in bed. Yet with help he popped up, got his shoes on, and greeted us at the door. Because most of the transplant children live under constant contact isolation, we couldn't enter Mathias' room, but he was happy and motivated to receive a bear!

The next family we visited was baby Nicole and her Mom. Naturally it isn't easy for a family to be caring for a sick child and isolated in a hospital room. So in many ways I felt that Nicole's mom was grateful to see adults and have live interaction today. I remember the days being isolated in a hospital room, and I am not so sure I would have been as gracious about a stranger taking my picture as many of these families were today. Nonetheless, the children and their siblings appreciated the bears. I rode down in the elevator today with a sibling who received a bear and she was beaming from ear to ear and felt very special! Mission accomplished.

We then journeyed to the PICU. The unit Mattie lived in for over a year. Though Cory is a teenager, he was very happy to chat with us, he invited us into his room and was smiling as he received a bear. With Cory is Elizabeth (one of the girl scouts) and me. The irony about this room is the last time I was in it, Mattie had died. It is hard to look at this room the same way. Though the sun was shining in through the window, to me it was like walking into a funeral home. However, I was the only one seeing that vision.

Our next stop was to see this cutie, Sophie. Sophie was actually one of the children who was at the Verizon Center event with us. She was beyond thrilled to be visited by the girls and to receive her own bear! As you can see she invited some of the girls all around her bed!

Our last cutie which we were allowed to photograph is Destiny. A very beautiful name to go with a very alert and curious little girl. Destiny loved the bear and was playing with it once we walked out of the room. It is our hope that these cuddly creatures bring a smile and some moment of happiness into the lives of these courageous children.

As I told Tanja today, I was so happy she came to our Georgetown event. We had a good time processing the day and it always helps to have a friend there who knew Mattie and is part of our mission to see the Foundation grow! To end my day with a smile, my friend Heidi, told me that she and I were in the local paper, the Alexandria Gazette. Since I don't live in Alexandria, but I wanted to see the paper, I googled it. Here is the picture in question from our time together at the Zumba Explosion fundraiser last Sunday. If you look closely you will see Heidi and I!


I would like to end tonight's posting with two messages I received today. The first one is from my friend Heidi. Heidi wrote, "Your presentation got me thinking about a lot of things I never realized...the lack of drug choices for children with cancer, the effects on families, the financial issues...I know it must be difficult for you to re-examine and create awareness every day. You are an inspiration! So glad that our paths have crossed. You are so good at connecting with all types of audiences. You have a gift."

The second message was from one of the girl scout troop leaders. Pam wrote, "On behalf of St. Mary's Girl Scout Troop #3989, I want to thank you from the bottom of our hearts for everything you did to make such a beautiful experience for our troop today. Your presentation was amazing, and from the heart. The love you have for your son is contagious, and grows in those you surround and educate, and I know will impact the lives of the ten girls you met today. Fridays are always tough for the girls. They are very tired, and have been under a lot of school and social pressure at school. I assure you they were listening. As we drove home in my car with four of the girls, they talked about each child they saw and gave a bear. You had an enormous impact on these girls. I also find it amazing how they are like sponges - taking it all in - and sometimes you don't realize how much until you hear them conversing amongst themselves.
Thank you for all the arrangements you made with the staff and administration of Georgetown Hospital. Thank you for all your hard work in the preparation of your power point presentation. Thank you for your excellent presentation. You were so engaging with the girls. Most importantly, thank you for the opportunity you and the Mattie Miracle Cancer Foundation have given our girls. On behalf of our troop, I thank you!"

February 2, 2012

Thursday, February 2, 2012

Thursday, February 2, 2012

Tonight's picture was taken in February of 2009. As you can see Mattie was in his PICU room, surrounded by all the items I brought with us on each visit. Mattie's room was always decorated with things, and this did not only help our morale, but it also gave medical personnel who entered Mattie's room an excuse to interact with him and ask him questions about his toys, art, and creations! Sitting on Mattie's bed is Katie. Katie was one of Mattie's amazing HEM/ONC nurses. Katie was used to Mattie's legs all over the place, and in many ways Mattie used his legs like arms. Katie had an infamous grey sweater. It wasn't featured in this picture but Mattie's left leg loved that sweater because the sweater had a belt. By the time Katie was finished with her exam of Mattie, he usually had untied her belt and  pulled it right off her sweater. In fact, one day, he kept the belt during the entire portion of her shift. He eventually gave her the belt back, but neither of us could look at Katie's sweater the same way after that day. That belt got the "Curious George" (the name given to Mattie's left leg) seal of approval!


Quote of the day: Thousands of candles can be lit from a single candle and the life of the candle will not be shortened. Happiness never decreases by being shared. ~ Buddha

In Mattie's case, he was an amazing candle, who did light the minds and hearts of thousands of people. But unlike Buddha's quote, Mattie's life and light were cut too short. Yet I try to see that Mattie's spirit and light remain in each one of us he touched, and with the friendships he made and nurtured for us. So perhaps if I think about the number of friends and people impacted by Mattie, I see that his candle wasn't shortened per se, but it has multiplied ten fold.

I had the good fortune of spending the day with my friend Junko. She and I are both not good at taking breaks or doing nice things for ourselves. So getting together gives us the perfect motivation to care for ourselves. Today's journey was to a spa for a massage and lunch. We spent six hours together in what we call our oasis in the city. Our time together always goes quickly and I joke with her often about how we need to pay money to remove ourselves from phones, computers, and the stresses of life. I imagine this is a familiar problem for SO many of us these days.

While talking about the Foundation today, we chatted about the use of interns to help us manage the administrative tasks of the Foundation. Ironically the MBA students recommended the same thing to me. But the catch is I am very protective of the Foundation, its image, and what documents, materials, and communications emanate from us. It was through this discussion that I realized my level of micromanagement is due to the simple fact that the Foundation is my baby. I take what we do personally and it is hard to give up control to others. I also feel that until we become a strongly established organization, our role in the direction and tasks of the Foundation are crucial.

I continue to plug away on the plans for the psychosocial symposium, and have various meetings next week to finalize things. However, I am happy to report as of today I have secured 8 continuing education contact hours for licensed professional counselors, social workers, and psychologists to attend the symposium. I feel very positive about this and have been overwhelmed by the responses I am getting so far from those who have seen our agenda for the day.

On Friday, I head to Georgetown University Hospital to present to Girl Scout Troop 3989 information about Mattie and the Mattie Miracle Cancer Foundation, and then help them distribute the 101 Build A Bears that they created for the children. This is my first time presenting information about Mattie and the Foundation to this age group, so stay tuned for an update and pictures tomorrow!

February 1, 2012

Wednesday, February 1, 2012

Wednesday, February 1, 2012

Tonight's picture was taken in February of 2009. It was close to Valentine's Day and one of Mattie's friends gave him this huge lollipop as a gift. The candy was bigger than Mattie's head. When Mattie's nurse, Erin, came into the room he couldn't wait to show her his latest gift! However, he wanted Erin to have a lollipop for the picture, so he handed her this smaller tootsie roll pop! So in reality this was a picture that was purposefully meant to display a comparison of gifts. Mattie felt special to have such a big piece of candy and truly was proud of it and that his friends had remembered him.

Quote of the day: Alone we can do so little; together we can do so much. ~ Helen Keller

I began my day by drinking 36 fluid ounces of water in under two hours. This may not sound like a lot of water, but for someone like myself, you might as well have asked me to drink the ocean. It felt like the equivalent. Because of how I have been feeling over the last month, my urologist, asked me to complete an intravenous urogram. This is a radiological procedure used to visualize abnormalities of the urinary system, including the kidneys, ureters, and bladder.

The test took place at Virginia Hospital Center (VHC), which was my hospital before Mattie developed cancer. In fact, Mattie was born at this hospital and also diagnosed with cancer at VHC. Going back to VHC holds various memories for me, good and the horrific. All my prenatal care was done at VHC as well, and to me this hospital helped to bring Mattie into this world and at the same time, through his diagnosis on July 23, 2008, they helped to take him away.

As I headed to the radiology department, I naturally couldn't shake from my head the afternoon of July 23. I remember taking Mattie to the hospital for what I thought was going to be a quick x-ray to determine if he fractured or broke a bone. I honestly in my right mind would never have guessed I would receive the news of Osteosarcoma. That word and the scene of how I received that news will be permanently etched into my mind.

Mattie taught me about every scanning procedure possible, so I knew exactly what to expect with a ct scan today, accept for the actual feeling of being injected with a contrasting dye. Mattie always hated that dye, but it wasn't until today did I have the foggiest understanding why. As soon as the dye goes into your vein, it feels like your body is on fire from head to toe. Fortunately my tech prepared me for this feeling and told me how long it would last. But from a six year old's perspective this had to be down right frightening for Mattie. The ironic part is after the test was over, the contrasting dye left me shivering and I had to sit down in the hospital and drink hot tea to gain composure. I am a very sensitive person and over 14 months at Georgetown, I learned to read the techs' expressions and actions very well. I could immediately sense when they saw something on a scan, and this usually meant that the scanning process was going to take longer so they could get additional data and views of Mattie. I am also used to receiving devastating news, so until I get the scan report and results, I will be on edge.

Later in the day, I met up with Ann, who took me to lunch and then we walked together in the fresh air. It was another beautiful day, in the 70s, and it felt like spring. I would be happy to eliminate winter altogether, because I find I just feel better when it is warm. At lunch today, we bumped into one of Mattie's first preschool teachers, Lana. It is funny, because the last time we were at this restaurant we saw Lana as well. Lana is an avid blog reader and Mattie supporter, and it is always nice to catch up with her and share stories. In a way, each person who knew Mattie is a part of his living history.

I spent the rest of the day working on the symposium and had a delightful conversation with the CEO of a cancer organization in Sacramento, CA. This professional is very interested in our symposium and is planning on attending. I am simply thrilled and value this kind of support.

January 31, 2012

Tuesday, January 31, 2012

Tuesday, January 31, 2012 -- Mattie died 125 weeks ago today.

Tonight's picture was taken in February of 2009. As you can see Mattie was shaking hands with Geoffrey, the Toys R Us mascot. Geoffrey came to celebrate Georgetown University Hospital's ribbon cutting ceremony for the childlife playroom. When Mattie entered the Hospital in August of 2008, the pediatric unit had NO playroom. However, within months, this space opened up and it gave us a new found freedom. A place to see and interact with other children and families, and most importantly a diversion from being stuck in a hospital room. Linda, Mattie's Childlife Specialist, understood that Mattie was the kind of kid who needed responsibility and a task. So she appointed him to participate in the ribbon cutting ceremony, and actually was one of the kids who cut the ribbon that was attached to the entrance into the room! It was a very exciting day for Mattie that involved pictures and CAKE! Though I am not sure who was happier about the cake, me or Mattie! Though this may not be public knowledge, there were some VERY bad days at the hospital, in which I would literally eat frosting right out of a canister. I am not sure who knows this other than Linda and Peter, and now of course all of you.


Quote of the day: Moral imagination is the capacity to empathize with others, i.e., not just to feel for oneself, but to feel with and for others. ~ Thomas McCollough

Empathy is one of those buzz words that gets over utilized in our society. If you had a bad day at work, at home, are sick, something happened to your child, you suffered a loss, a death, and the list goes on, chances are someone is going to tell you they "EMPATHIZE" with what you are dealing with. But is that really TRUE??!!

I remember in grad school, one of my professors pounded into us the difference between sympathy and empathy. To some these words are used interchangeably and are perceived as expressing the same thing. But in reality sympathy and empathy are vastly different and we can thank the American Psychologist, Carl Rogers for this beautiful distinction. From the moment I first learned about Rogers, I loved his theory and philosophy. Rogers felt that to truly experience empathy for someone else, you need to feel "as if" you were that other person. It is not how you perceive the situation, but instead the art is to be able to enter into someone else's world and viewpoint and experience the pain and emotions from that person's lens. This is not as easy as it sounds to do and frankly it can take a huge emotional toll on a listener to be able to empathize all the time. Nonetheless, when Charlie sent me this quote today, my gut reaction was I hope that all my readers have someone in their life they can turn to who truly empathizes and understands them, and in return that we can share this gift with someone else. To be heard, understood, and appreciated are probably life's greatest gifts.

I began my day by visiting Ann's mom, Mary. Mary was happy to see me but unfortunately was unable to verbalize her thoughts today. I miss the days that Mary could freely talk and we could converse about various topics. Nonetheless, I am happy that I met Mary a few years ago, because it gives us some history together that enables me to understand sometimes what she is trying to say or feel.

Today in a way was a miraculous day. I woke up without a headache. That may not sound earth shattering to all of you, but for me this was a gift. I have suffered with intense headaches now for two weeks straight. So much so that it was hard to keep my head up and eyes open. But today was spectacular, and to add to this, it was a beautiful spring like weather day which inspired me to walk for several miles.

This evening, Peter and I went to Georgetown University to meet with one of the business school class groups. This group has adopted Mattie Miracle as their community based learning project in two classes. I learned tonight that I am a "social entrepreneur," which is someone who recognizes a social problem and uses entrepreneurial principles to organize, create and manage a venture to achieve social change (a social venture). I simply loved the title, and Peter and I had a productive session brainstorming several ideas with this group that ranged from analyzing our mission to developing an innovative psychosocial service that could be transferable to other hospitals. I find it very meaningful interacting with students and am inspired by how our story impacts them personally. 

January 30, 2012

Monday, January 30, 2012

Monday, January 20, 2012

Tonight's picture was taken in February of 2009. This photo I realize may need explanation because at first glance you are most likely confused by what you are seeing. Dressed in a yellow gown, blue mask, and pink basin on her head was Linda, Mattie's Childlife Specialist. Looking at Linda were Mattie and Anna (Mattie's physical therapist). What was happening was a show down with water guns. Linda was dressed up in this get-up to inspire Mattie to shoot her with water. She was very successful. Certainly Anna could have just assigned Mattie exercises to do with his arms to try to strengthen them after his limb salvaging surgeries. But both she and Linda knew this would never have worked for Mattie. Mattie needed to be stimulated and engaged, and through these interactions he landed up exercising and getting rehabilitated. Physical therapy was painful and hard for Mattie, most likely not only because he had surgeries and was undergoing chemotherapy, but because unbeknownst to us, his cancer was aggressively spreading all over his body. When I think back on what we asked Mattie to do, he amazes me. Since most of us wouldn't have even gotten out of bed if we felt the way he did.  

Quote of the day: The door of opportunity won't open unless you do some pushing. ~ Anonymous


Christine (my friend) has been trying to introduce me to her friend for months. Today, thanks to some "pushing" as the quote implies, I had the opportunity to have breakfast with Christine and meet her friend. Her friend is a parent at Mattie's school, who read my blog while Mattie was battling cancer. We had never met before today since her son is a year younger than Mattie. However, like me this woman has an only child, who is a son. In addition, she is a mental health professional as well, and these two commonalities just really caught my attention. Christine's son, Campbell, and Mattie were very close friends in kindergarten and in some respects I am happy to hear that Campbell was able to make another special connection with this lady's son.

We talked about all sorts of things at breakfast and I had the opportunity to reflect on what life was like living in the hospital for 14 months. Rarely do people reflect on this aspect of my life anymore, nor do they talk to me about it and ask me questions. I am not sure why? Perhaps those days are viewed to be in the past, or maybe because they were so horrible then, that people do not want to resurrect the pain. Nonetheless, talking about that time in the hospital is real. It is a part of who I am, and when I see the reactions on the faces I am telling my stories to, I then realize and understand that.... yes this indeed was a nightmare and it gives me insights to why I feel the way I do on certain days. I had the opportunity to retell some of my experiences with doctors, radiology techs, and pre-surgery meetings. For me no matter how much time lapses, I can recall the stories and the scenes like they happened yesterday.

I was telling these ladies today about one of the techs at Georgetown University Hospital. This particular tech I found out disliked Mattie. She found him to be spoiled and difficult, and really disliked coming to his room to give him mobile x-rays (at 2am no less!). She felt he was spoiled because he got a lot of attention from other hospital personnel and she felt it was not merited. As Mattie's status turned terminal, this same tech happened to see Mattie toward the end stages of his life, and she was mortified by what she saw. By that point Mattie was ravaged by cancer and was having trouble breathing. Mattie died a horrific death, death by suffocation in a way. Make a long story short, after seeing what Mattie endured, she reflected on his time at the hospital, and felt deep remorse. I was told that she felt horrible guilt for being so judgmental. Though I was saddened to hear all of this, it is my hope that she gained some perspective from Mattie, and will never be harboring these feelings toward another sick child again. 

Christine's friend and I talked about the benefits of therapy and therapy for dealing with grief in particular. I suppose one of the downfalls about being a mental health professional, is I am quite aware of what therapy can and can't do. I know in my particular case NOTHING and NO ONE can possibly repair the reason for my loss, therefore I believe I have to process this and handle this in my own way and time. As Christine's friend said to me today... "you know too much." She had my laughing, but in a way she is right, knowledge in a particular field can sometimes provide greater challenges than benefits.

I spent the rest of the day immersed in Foundation items, jumping from Walk related items to Symposium related items, and then to conference calls. I had the pleasure of talking to my friend and colleague, Denise, today about the symposium. She brainstormed some symposium ideas with me, and I appreciated hearing her insights and strategies for marketing the symposium to the community. It is my hope within the next week or so to finalize aspects of the symposium so we can begin advertising it and getting the word out.


January 29, 2012

Sunday, January 29, 2012

Sunday, January 29, 2012

Tonight's picture was taken in February of 2009 in the Lombardi Clinic. As you can see Mattie was sitting in his wheelchair and getting his left foot painted red. Why? Because Jenny and Jessie (his amazing art therapists) were creating a Pediatrics welcome sign on the fifth floor of the hospital, and they wanted to place hand prints of children treated at the hospital on this sign. Mattie listened to that request and was not interested at ALL. Until I said what about a foot print? Particularly a footprint of "Curious George." The name associated with Mattie's left leg. The ONLY appendage of Mattie's not ravaged by cancer. Mattie LOVED the idea and sat still for the painting process. I typically do not show two pictures a night, but I wanted you to see the finished product.



This sign can be found on the fifth floor of Georgetown University Hospital. It greets everyone to the pediatric units. Notice the red footprint on the upper right hand corner. This is Mattie's left foot. Though Mattie is no longer with us, I can't pass this sign without thinking of that day in February of 2009 or naturally of Mattie!




Quote of the day: Live as if you were to die tomorrow. Learn as if you were to live forever. ~ Mahatma Gandhi

Though the goal was to rest this weekend, I have done everything BUT that! I spent a great deal of time yesterday and today working on Foundation items. As the afternoon rolled around, I had signed up to attend a "Zumba Explosion" fundraiser in Alexandria, VA. This fundraiser was organized by Brooke Curran, who Peter and I got connected with through our friend Tina. Brooke loves to run and is committed to running a marathon in each of the 50 states, the District of Columbia, and all SEVEN continents. Brooke runs now to raise money for five local charities in Alexandria, VA. All charities that support a local children's cause!

Tina connected us to Brooke on Facebook and Brooke learned about our Whole Foods event on January 25. We had the pleasure of meeting Brooke in person at Whole Foods and we appreciated her support and enthusiasm for our cause. So when I learned about her mission to support children and that she was doing a zumba fundraiser today, it seemed like a great match for me. In fact my zumba instructor encouraged us to go, and there was a group of four of us from my zumba class in attendance tonight. The four of us danced together and chatted throughout the evening. On an aside, I have really learned that NOT all zumba classes and instructors are created equal. I have done zumba now on Princess Cruises, in my weekly class with Jenny, and now tonight at the Caryle Club with Zumba Fitness instructors. There is a lot of truth to the fact that you need to find the right class for you. The beauty of Jenny's class is she is a trained dancer and therefore her class gets you dancing, not only jumping around. I love the way Jenny's class makes me feel. Nonetheless, tonight got me to forget about some of my own pains for a while, and of course gave me the opportunity to spend time with my friend Heidi and to support a good cause.

I invite my readers to check out Brooke's website and the charities she supports. Brooke is an excellent example of someone who has taken something she loves and channels it to help and give back to others. Please visit: www.runningbrooke.com