Saturday, May 28, 2011

Saturday, May 28, 2011

Tonight's picture was taken in May of 2008. We took Mattie to Calvert Cliffs in Maryland. This is a very special nature trail, that is about a mile in length. After walking, the trail leads you right onto the beach. The wonderful thing about this beach is if you are patient and do enough digging, you are sure to come home with sharks teeth. Mattie always had a good time visiting this well kept secret and as you can see in this picture he was all business as he was examining sand and sifting through it to find a prize. Mattie always left every visit there with several teeth in hand! 


Quote of the day: In grief we know the worst of what we feel but who can tell the end of what we fear? ~ Hannah More

I spent the entire day in front of the computer. I was determined to work on the grief and bereavement grant proposal for Georgetown University Hospital and complete it so that Peter and I can go on a week's vacation to the beach tomorrow without taking work with me. I just received the paperwork for the proposal yesterday afternoon, so this was a QUICK turn around time. It was after spending over 9 hours on this today and part of the day yesterday, that I had to accept that without my degree I could not possibly achieve what I did. Sometimes I wonder if the stress of getting a doctorate degree was worth it, but the program taught me how to write, think logically, and synthesize and generate research. After I submitted my draft to Dr. Shad tonight, she called me immediately. She loved what she was reading and wanted to let me know her feedback. The ironic part about this is it meant a lot to me that she thought I had the skills to do this and was competent enough to take this on. I not only proved that to myself today, but I had to accept that what I accomplished was unique to me and my skill set. I rarely give myself positive feedback, but even this, I couldn't help but acknowledge.

So literally in a week's time I gave a presentation at the Medical Grand Rounds at Georgetown University Hospital, in which I had to tell Mattie's story and the lessons learned, then two days later I hosted the Foundation's Walk, and now I just completed a grant proposal. That may not sound like a lot, but when you consider the emotional component to each of these activities, it is actually a FEAT of an achievement!

I need a break for a week and Peter and I are thankful to Ellen, Charlotte's mom, for allowing us to escape to her beach house. So the next time you will be hearing from me, I will be by the Atlantic Ocean. I would like to share some more pictures with you from the May 22 Foundation Walk.

A brand new addition to our Walk this year, was having food from Clyde's at the Mark Center. This particular Clyde's was Mattie favorite place to eat. However, not only did we have Clyde's food, but the food was grilled for us right at the event by the executive chef herself, Rebecca Jacks. Rebecca and I had never met each other, but she heard about us and about Mattie from the restaurant's general manager. When Clyde's offered to donate food to the Walk, I had no idea that Rebecca was also going to volunteer her time, energy, and resources. In our book, she is a very special person! To learn more about Clyde's at the Mark Center, please visit:
http://www.clydes.com/main/RestaurantsDetail.cfm?Restaurant=Clydes_at_Mark_Center&Section=Main


Rebecca's food went over extremely well and she really worked with me to figure out what types of food would hold up outside without access to refrigeration! I admired her concern for the safety of the food and for those consuming it. Rebecca and Liz Cortes, from the Lego store, are very rare and fine individuals. Because from my experience so many people are motivated by incentives and final outcomes. These ladies are motivated by the cause and the passion to help children with cancer. I salute them and hope this is only the beginning of our connection together.

For three years in a row, there has been a bake sale at our Walk! The bake sale is coordinated by one of Mattie's caregivers, Marisa. Marisa never knew Mattie when he was well. Instead, she helped me at home when Mattie was battling cancer. Despite the challenges he presented, Marisa never skipped a beat and was a compassionate and trustworthy caregiver to Mattie. Marisa is now attending college at NYU, and what you should know was that only days prior to the Walk did she complete finals. Despite that she came home and started her summer break by baking175 cupcakes to sell at the bake sale. She is a very special person and does a remarkable job at keeping Mattie's memory and spirit alive. He would have definitely approved of cupcakes at his Walk. After all, during treatment cupcakes were one of the foods Mattie actually loved to eat!

Marisa set up a cupcake decorating station at the Walk and as you can see, people of all ages loved designing their own cupcake and then of course eating it!

Friday, May 27, 2011

Friday, May 27, 2011

Tonight's picture was taken in 2009 at the Mattie March. This was a day that I will always remember. I recall the excitement in the air and the amazing turnout of supporters for Mattie. Mattie couldn't get over how many people were there for him. In retrospect, I am so happy he had this moment in time. If I could title this picture, it would simple say "FRIENDS." Pushing Mattie's wheelchair around the track was his big buddy, Brandon. Next to Brandon was Robbie, one of Mattie's favorite Childlife interns, and right by Mattie's side, holding the side of the wheelchair was Zachary, Mattie's closest preschool buddy. If this picture doesn't scream out support and friendship, I don't know what does! 

Quote of the day: The greatest pleasure in life is doing what people say you can not do. ~ Walter Bagehot

Today was another non-stop and busy day. I began the day with a visit to the dentist's office for a check up. I typically see the same hygienist, but today, I found that Libby went on vacation and they assigned me to another person. This new hygienist and I took an instant disliking to each other, and needless to say, her cleaning was painful. Painful enough that I had tears in my eyes. When the whole procedure was done, I was absolutely NOT happy. So I spoke to the management in the office and not only had them write in my electronic file that I never wanted to revisit this particular hygienist, but I also had them make a note that if these personnel changes happen again in the future, they have to alert me ahead of time. I am on a crusade lately with doctors. For many of them, their lack of regard for patients is simply intolerable. If you think I am wrong, try to schedule an appointment with a doctor when YOU want to be seen!!! Good luck. I realize their schedules are busy, but if the rest of the business world ran like their schedules, NOTHING would get accomplished.

I then spent the rest of the day running around doing post-Walk chores, and then I headed to the Georgetown University Hospital to meet up with Dr. Aziza Shad. As many of my readers know, Aziza is the chief of the pediatric oncology division at the Hospital, in addition, she was the attending on call the week that Mattie was dying in the hospital. You can learn a lot about a doctor while watching her help your son die. Aziza was presented with a grant opportunity and she asked for my help in putting it together. It is due next week, and Peter and I are scheduled to go to the beach for a week on Sunday, so wish me luck with this important task. The grant would provide funds to Aziza to establish a grief and bereavement program for families who lost a child to cancer at Georgetown.

Tonight's Walk pictures focus on everything LEGO! We had a wonderful LEGO presence at the Walk this year, thanks to Liz Cortes. Liz is the assistant manager at the Tyson's Galleria store. Liz met Mattie in August of 2009, when Mattie's cancer was determined to be terminal. Liz held a special Lego building evening in the store for Mattie and his buddy Abigail. It was a special evening, because Mattie had the store all to himself and he got to build with several wonderful Lego employees, Brandon and Jared. Mattie touched Liz's heart and out of her own good will she accomplished SO many amazing LEGO activities for us at this year's Walk. Liz also brought 15 Lego folks with her to the Walk, and they all volunteered their time with us for the entire event. To me, they are a group of very special and unique individuals, who are passionate about our cause and helping children. 

There were THREE Lego stations at the Walk. The first station, was for Lego independent building. As you can see there were hundreds of Legos dispersed on every table. For a Lego fan, this was heaven! If Mattie were at this event he would never have left the Lego tents! Mattie would have been so proud of what Liz accomplished. She captured Mattie's spirit and love for building and creating with Legos at our Walk.


 

Another wonderful independent Lego
build table!

This picture makes me smile, because clearly DANIEL wanted to let us know he was here and loves Legos!

The second Lego station was the Lego Mosaic. A Lego creator by the name of Doug Hill donated to us 23,000 Lego bricks and his creativity. With the bricks he recreated our Foundation's Logo. However, the fun part was the Walk attendees got to assemble the pieces of the logo. As you can see in this picture, Mattie's kindergarten friend, Tim, was standing in front of a grey Lego base plate. On the plate, was marked as to which Lego piece went where. Tim worked diligently on this project, and he actually accomplished a good portion of the logo.

What I find fascinating about these pictures, is I did not tell the photographer which children to take pictures of. However, it seems ironic that the children participating in the Lego Mosaic were all of Mattie's friends. Featured here is Livi. Livi is Campbell's sister (Mattie's close kindergarten buddy). As you can see she was working with black and white Lego pieces and filling in the base plate.

Here is a picture of Liz Cortes, from the Lego store, working along side Tim. As you can see from the previous picture, Tim really made some great headway on this base plate!

Tim's whole family participated! Eliza and Alex, are Tim's brother and sister!















I wanted to show you this picture, because pay attention to the GREEN structure in the background. This was a frame constructed of Lego base plates. When each of the grey base plates (like the one you saw Tim working on) was complete, it would literally be attached to the green base plates. Since all the parts were made from Legos, they stuck beautifully together.

So here is a close up. We went from all GREEN, to slowly each of the filled in grey base plates were snapped into place on the green ones. Mind you each white, red, black, yellow, and orange piece of this logo, was made out of LEGOs.









You can see Liz was transporting a filled in grey base plate over to the green frame and was going to snap in this last tile.

Peter and I with many of the fantastic Lego volunteers! The fellow in the front row in green (next to Liz) is Jared. Jared was one of the Lego employees who worked with Mattie in August of 2009.

The final Lego station at the Walk was hosted by the Washington, DC Metropolitan Area Lego Train Club (WAMALTC). This group displayed a wonderful working Lego city, with motorized trains to capture the imagination.


This evening I decided to do laundry. While dealing with that process, I ran into my 80+ year old neighbor, Kathleen. She too was doing laundry and we landed up chatting for an hour. She was very fond of Mattie and in fact, reminded me of the first time she met him. Which so happened to be in the laundry room! She said she was impressed with Mattie the moment she met him. She thought he was bright, engaging, and mature for his age. She said he captured her attention and wanted to spend more time just listening to him. YEP that sounds like my Mattie. I learned though that Kathleen was just diagnosed with cancer. However, based on what she had seen Mattie endure, she decided to keep her current quality of life and not elect to undergo treatment. She said many people do not like talking to her about this, and though she was hesitant to bring it up with me, she knew I would understand. Which I do! I greatly respect her decision not to undergo treatment and instead to live her life to the fullest now, without being incapacitated from surgery and chemotherapy. I suppose Kathleen's talk tonight made me once again reflect on how Mattie has touched all of our lives. Even in the lives of people who did not know him as well as me.

Thursday, May 26, 2011

Thursday, May 26, 2011

Tonight's picture was taken during the Mattie March in 2009. Mattie was sandwiched between Brandon (his big buddy) and Robbie (a childlife volunteer Mattie was very fond of at the Hospital). They were holding an umbrella over his bald head. Mattie disliked wearing hats as well as sun screen, so fortunately he had good friends looking out for him. What I want you to notice however in this picture was the cup that Brandon is holding. This was NOT an ordinary cup, meaning it was not filled with fluid. Do you want to guess what it was filled with? If you guessed caterpillars you would be right. In fact, Mattie placed a caterpillar on his left arm, and you can see him playing with it in the picture!

Quote of the day: I measure every grief I meet with narrow, probing eyes - I wonder if it weighs like mine - or has an easier size. ~Emily Dickinson

This morning I took my parents to the airport, and as I am writing tonight's blog I know they have already landed safely in Los Angeles. It was a strange day in a way. A day where I wasn't planning the walk and a day where I had no company in my home. This is a lot to adjust to actually, especially since the Walk has defined my life quite intensely over the last two months.

I am continuing to dig out from the Walk, organize paperwork, and pack up all the items we take out each year to host such an event. However, these items are all over the place, not just at my home, but also at the homes of my key volunteers. So slowly this week I am consolidating everything. I went over to Ann's house today to collect her piles so I can sort through them, and in the midst of that, I spent several hours in her garden weeding and planting. It was a super hot and humid day, but as my faithful readers know, this is how I like it.

As I continue to share Walk photos with you this week, I decided to focus tonight's posting on the actual Walk Program. The event itself took place from noon until 4pm. However, at 2pm, all our participants gathered for a 30 minute presentation. During this program our supporters heard from Peter and I as well as from our two official Faces of Hope, Lauren Chelenza and Noah Grove, and their moms, Carey and Rachael. This year's program ran smoothly and it was very meaningful and powerful for attendees to hear from Lauren and Noah. They made pediatric cancer real for their audience and I was very proud of both of these young survivors because telling your story and sharing your thoughts and feelings in front of hundreds of people is not easy. But they did it with grace, beauty, and sincerity.

This is how I introduced our special guests....................................

Peter and I could not think of a better way to bring awareness of childhood cancer and the impact it has on the family than for you to hear from two amazing cancer survivors, our faces of hope, and their moms. I am honored to be in the presence of Lauren Chelenza and Noah Grove.


• I know the types of treatments Lauren and Noah survived and the obstacles they have and continue to face. Yet despite this, they actively speak and educate others about pediatric cancer.

• It isn't easy to retell your cancer story, which is why I so admire their strength and courage and their passion to want to help others.

Lauren is 13 years old and lives in Langhorne, PA. Lauren is an Osteosarcoma survivor and is approaching her second anniversary of being No Evidence of Disease. Lauren was diagnosed around the same time as my son, Mattie. We became connected with each other through Mattie's blog. Her mom, Carey and I endured childhood cancer together and in essence as I was tracking my son's progress, I was tracking her daughter, Lauren's as well.

Lauren is the founder of "Bows for Hope." Which is an organization that builds awareness about childhood cancer through the creation of her beautiful duct tape bows. I am wearing two in my hair today. Lauren creates hundreds of bows a year, and 100% of their proceeds comes back to the Mattie Miracle Cancer Foundation.

Noah is 12 years old and lives in Frederick, MD. He is an Osteosarcoma survivor and this year marks his 7th anniversary of being No Evidence of Disease. Noah and his family created Noah's Courage foundation. Over the last five years they have raised close to $75,000.00 for Georgetown University Hospital. Noah's dad, Chris, featured a horse in the Preakness yesterday and through this event Noah has had the opportunity to bring further community awareness to childhood cancer.

Below you will find the speech that each special guest delivered.......................................
 

CAREY CHELENZA

My name is Carey Chelenza and I am Lauren’s mother. My sister introduced me to Vicki’s blog a short time after both Mattie and Lauren were diagnosed with osteosarcoma in their right arms. It was nice to have Vicki to compare notes with about the treatments our children were going through. We got to meet Vicki and Peter in Washington a couple years ago at the tree lighting ceremony for families who have or have had a child with cancer. Unfortunately we never got to meet Mattie.

Before the summer of 2008, the thought of having a child diagnosed with cancer was the furthest thing from my mind. Little did I know that our family was about to join a club that no one ever wants to be a part of. Having a child diagnosed with cancer is a life changing event. You lose the control you thought you had in your life and are told by social workers that the change in your life is your ‘new normal’, a phrase that Vicki and I both hated, because it is not normal for your child to have cancer. You also gain more knowledge than you ever wanted to know about pediatric cancer.

Since Lauren’s diagnosis, our family has become more sensitive and concerned for other families going through this experience. I find myself connecting with other parents through the Internet to give any support I can to someone going through a similar situation. Lauren and our family have seen other children that Lauren became friends with, who lose the battle to this horrible disease.

Having a child that has been diagnosed with cancer is something that never leaves your mind. This past winter Lauren had multiple consecutive colds, many more than usual. Of course, I was wondering if it had something to do with either her cancer treatment or a recurrence of her cancer.

Because of Lauren’s limb sparing surgery she does have physical limitations that other kids don’t have. She has had to drop out of the sports she previously participated in and doesn’t participate in gym at school. I just thank God everyday that she has regained her health and is moving forward with her life.

If it wasn’t for the technology in this day and age, we would have never met Vicki and Peter. We are very happy to have connected with this family and are proud to have Lauren do work to support their Foundation.

LAUREN CHELENZA -- FACE OF HOPE
 

Hello, my name is Lauren Chelenza and I am a Osteosarcoma survivor. I was diagnosed in August 2008, accidentally, when I had an x-ray of my spine for scoliosis, and a tumor was discovered in my arm. I had surgery, to remove the cancer in my arm and went through chemotherapy treatments for a year. But, I am perfectly fine now. I have had no evidence of disease for almost 2 years. While undergoing treatment, kids like Mattie who had and was going through the same things as me gave me motivation. It also gave me hope to know that we were going to battle it together and never give up. Having cancer changed me in many ways. I became stronger and unfortunately faced what it is like to have to wear a wig, be very sick, and not be able to go to school for a year and instead be in the hospital. But having cancer made me realize that we all take like for granted, while other people are hoping that they will see a tomorrow. It was very hard for me going back to school after treatment because I had to wear a wig, deal with being able to lift your arm up and somewhat guarding my arm at times to make sure that no one bumped into it in the hallways. Also, keeping up with homework and assignments that I basically never had in a year. What inspired me to create Bows For Hope was that I was upset about Mattie passing away, and I didn't want anyone else to have to go through the same thing that Mattie and I did. So I wanted to raise money for Mattie's Foundation and lots of people started to like my bows after I did them for an English "How to" project. What you can do to help children and teens like me is for you to donate to the Mattie Miracle Cancer Foundation. THANK YOU! :)

 
RACHAEL GROVE
 

Good Afternoon, my name is Rachael Grove and I am the proud mother of 2 children, Noah and Carson. My oldest son Noah was diagnosed with Osteosarcoma at the age of 4 1/2. The day the biopsy came back positive ranked up there as one of the worst days of my family's life. We went from getting ready for kindergarten to spending the next 8 months hospital bound. AND then to have to tell your then 5 year old about a decision that his mom and dad had to make for him that would affect the rest of his life.  A decision that no parent should have to make. We had to do this all because of cancer........... It is with these faces of hope that we see here today, that gives me hope that I will see a cure for cancer in my lifetime. With that, I would like to introduce my hero and son, Noah.

 

NOAH GROVE -- FACE OF HOPE

Hi, my name is Noah Grove and I am 12 years old. I am a 7 year cancer survivor. I was diagnosed with Osteosarcoma, the same cancer Mattie had, when I was 4 1/2 years old. I had to have chemotherapy for 8 months. At that time I lost all of my hair. As you can see, I also lost my left leg to this horrible disease. I don't remember much of that time, but I remember my parents telling me that my leg was sick and went to heaven. Even though I am now cancer free, I am still not like the rest of the kids my age. Cancer took away my leg which means I can't run as fast as my friends or even my little brother. I used to go to bed at night praying that I still had my leg. But now that I am older I realize that this is my life now. My favorite sport to play is soccer and I have to play goalie because my prosthesis keeps me from playing the position I'd really like to play. I have been very lucky that I have good friends and no one has ever made fun of my leg. It is my wish that no kid has to go through what Mattie and I went through. That is why it is so important to me that I help raise money for the Mattie Miracle Cancer Foundation. It is an honor to be here. Thank you!

After Lauren and Noah spoke, the crowd took to their feet and gave these young survivors a standing ovation! It was a wonderful sight to see, which explains my facial expression on the left. I was happy and also so grateful that the audience gave Lauren and Noah such a well deserving reception!

 

After the standing ovation, I then spoke to the audience about the four main achievements that the Mattie Miracle Cancer Foundation accomplished this year (I will share the speeches Peter and I delivered in another blog posting). While I was talking, the photographer captured Lauren and Noah listening. In a portion of my speech, I talked about Mattie and how his life continues to motivate and inspire me to help other children with cancer. Mattie is what motivates me to do a walk each year! I have no idea when this picture was taken, but I would surmise that these facial expressions were a reaction to the personal information I was sharing.
The Mattie Miracle Cancer Foundation is honored that Lauren and Noah served as our Faces of Hope this year. They are excellent role models and deserve to be commended for the awareness they bring to the community regarding childhood cancer.

Wednesday, May 25, 2011

Wednesday, May 25, 2011

Tonight's picture was taken in May of 2008. We were walking on Roosevelt Island with Mattie, and as was typical for this time of year, Mattie was collecting tent moth caterpillars. If you look closely at the stick he is carrying, you will see a caterpillar right on it. It is the simple things like this that remind me of Mattie and though at the time, I wasn't wild about collecting caterpillars, I have now come to miss it.

Quote the day: Memory is a way of holding onto the things you love, the things you are, the things you never want to lose.


My parents and I spent our last day together, before they return to Los Angeles tomorrow morning. In the afternoon we met up with my graduate school friend, Amany. Amany and I have known each other for years and with each other's support we managed to survive and graduate from a doctoral program in counseling. I use the word "survive" because in order to obtain a doctorate degree you wouldn't believe the various tortures you are put through. It is a test of endurance, perseverance, humility, political savviness, and most of all determination. Not unlike the hazing process fraternity pledges go through, there is a great deal of UNREPORTED mental and emotional hazing that goes on to obtain a doctorate degree. If you think this problem just lies with Amany and I, I assure you it doesn't. Once I graduated with my PhD, I decided to develop a conference series to help doctoral students. I ran sessions to discuss how to complete a dissertation and to survive the process. Guess what? Each conference session was ALWAYS packed!!! Meaning that this is a COMMON problem, but an UNSPOKEN one. Actually the issue is so pervasive in academia that I always joked that one day I wanted to go on Oprah to expose this abuse.

My dad asked both Amany and I at lunch the following question... If we had known back then what we do now about obtaining a doctoral degree, would we have still pursued the degree? It was an interesting question. Cancer has allowed me to see that we waste a great deal of time pursuing stressful things in our lives. I lived with a great deal of stress for years trying to jump through professional and academic hurdles. Was it worth it? It is hard to say. But the conclusion I have come to is that the doctorate helped me to develop a certain level of confidence and a great deal of strength to handle inordinate amounts of stress. So in all actuality it prepared me to tackle cancer. Because after surviving a doctorate, I won't allow any medical doctor to intimidate me and I lived many years with little to no sleep balancing work, clinical work, and graduate school that this made me an ideal candidate to survive time in the PICU. 

I have received some beautiful emails over the last couple of days about the Foundation's Walk on Sunday. I appreciate all the positive feedback and it is through these comments that I know Peter and I are on the right track to effectively bringing awareness to pediatric cancer.
I am still sorting through pictures, but I wanted to share a couple more with you tonight. This photo features Lauren, our Face of Hope. Lauren sold hundreds of bows at the Walk and she was joined by her friends Katie and Colleen. Katie and Colleen assist Lauren in making Bows for Hope. For those of you who were unable to attend the Walk, Lauren is an Osteosarcoma survivor and was diagnosed with this disease a week after Mattie. Though she was treated in PA, and Mattie was in DC, Lauren's mom and I became e-mail buddies. We went through the treatment process together, shared stories, frustrations, and fears. In so many ways, being connected with Lauren makes me feel connected to Mattie and I am so honored she designs bows and donates all her proceeds to Mattie Miracle. She is an amazing young lady. I will be sharing her Walk speech with you shortly.

At Lauren's Bows for Hope table, she was visited by my friend, Carolyn. Carolyn was our chair of our very successful Walk Raffle. Next to Carolyn is her daughter, Ellie. Ellie and Mattie went to preschool together and next to Ellie is Charlotte (Mattie's girlfriend). Both girls were admiring the bows! In fact, Carolyn told me that Ellie bought several bows and plans to wear a different hair bow to school each day this week. I am actually quite impressed with the feedback I am receiving from attendees about Lauren's impact on their children. Children educating children, can be very powerful indeed.

In this picture is Margaret and Susan. Both are my friends. Margaret was Mattie's preschool teacher and Susan is a former student of mine. For two years in a row, both women have run our Foundation Table. This year the Foundation did very well on site, and we can not thank our attendees enough for their level of financial support and generosity!







Our friend Liz sent us several wonderful photos today. I happened to love this one in particular. One of the children's activities at the Walk was balloon creations. Clearly you can see this wonderful balloon hat on this cutie's head!

I am not sure who is more adorable here, the girls or the balloons they are holding. Either case, together, they are a great combination.

Noah was also our official Face of Hope. Like Lauren, Noah is an Osteosarcoma survivor. Noah had to have his leg amputated above the knee to remove the tumor. Noah actually did a beautiful job explaining how he feels about not having his leg. I will be posting Noah and Lauren's speeches on the blog very soon.

Noah and Amanda are pictured in this photo. Amanda also has a type of bone cancer, called Ewing's Sarcoma. As you can see, she too had to have her leg amputated.

To me this picture screams out HOPE! As you can see Amanda and Noah are running together on the track. It seems symbolic of the fact that nothing is going to hold them back from living their lives. I could type these words, but the picture I feel does a MUCH better job at conveying the message.

I would like to end tonight's posting with a message from our friend Liz. Liz's son was in Mattie's kindergarten class and you should also note that Liz was the thoughtful and caring person who chaired the first Mattie March in 2009. For that, we will always be grateful to her. Liz wrote, "I just wanted to tell you how terrific I think the walk was. It seemed so professionally done. It sure has come a long way since our first three years ago. My children had a great time. The program, the special guests, and the posters along the walk, were so well thought out and executed. The foundation's goals and what you have already been able to accomplish were clearly laid out. In short, it was fantastic. I was sitting in those bleachers thinking you are such an amazing woman and that your skills/education/career will make such a huge contribution to the cancer fight, especially to those families going through it (an obviously very neglected aspect of the whole ordeal). May God bless you and Peter in ways you have yet to realize. You are making the world a better place--all for the love of Mattie."

Tuesday, May 24, 2011

Tuesday, May 24, 2011 -- Mattie died 89 weeks ago today.

Tonight's picture was taken in July of 2007. You can see two things from this picture. The first one was that Mattie LOVED Lightning McQueen, the car character from the Disney movie. The other thing Mattie loved was building, stacking, and creating.  Mattie's friend from preschool was moving to California, and Mattie inherited his friend's blocks. Mattie loved them and in many ways despite it being 89 weeks since Mattie's death it is hard to accept that he and his toys are no longer surrounding us! 

Quote of the day: There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief…and unspeakable love. ~ Washington Irving

I began my morning by crying. I had a visitor to my home today and she recently had a baby. She wanted to show me pictures of the baby and of her three sons. As she was talking she then realized that perhaps this was bothering me. At one point she stopped talking and she began crying. She was crying because she remembered Mattie and she wanted me to know that I was a good mom. She paused because in a way she couldn't understand how she could have three healthy children and I now have none. A brilliant question, but as we know there are NO brilliant answers. As I told her, talking about her children is a good thing and a natural thing. She shouldn't stop this just because of my situation. I also told her that I was happy that her children were so important to her since she should consider herself fortunate to have ones who are alive and healthy.

Peter and I received over 300 professional photographs today from Herman Farrer. Herman covered our Walk this year and he did an amazing job! I feel he captured the spirit of the event as well as the incredible expressions on people's faces. I will be sharing these photos with you very soon! For those of you unable to attend the walk, I believe you will get a good glimpse of the activities and excitement of the day from these photos.

My parents and I spent the day together and it is hard to believe they are leaving on Thursday. It seems like they just got here. But with a Walk falling in between their visit, time just zooms by. This evening, I took my mom to the Kennedy Center to see the musical Follies. This was a late Mother's day present. I happen to be a big Bernadette Peters fan, and was excited to be able to see her perform again live. Follies is a musical with music and lyrics by Stephen Sondheim. The story concerns a reunion in a crumbling Broadway theatre, scheduled for demolition, of the past performers of the "Weismann's Follies," a musical revue (based on the Ziegfeld Follies), that played in that theatre between the World Wars. It focuses on two couples, Buddy and Sally Durant Plummer and Benjamin and Phyllis Rogers Stone, who are attending the reunion. Sally and Phyllis were showgirls in the Follies. Both couples are deeply unhappy with their marriages. Buddy, a traveling salesman, is having an affair with a girl on the road; Sally is still as much in love with Ben as she was years ago; and Ben is so self-absorbed that Phyllis feels emotionally abandoned. Several of the former showgirls perform their old numbers, sometimes accompanied by the ghosts of their former selves.


I found the musical depressing in content, the music was not memorable, and worst of all, I was saddened to hear Bernadette Peters' decline. Her voice has lost its luster, range, and vibrancy. In fact, I wish I did not see this play because I would prefer to remember her for the stage presence and gift that she had and which made her so memorable.

I appreciate so many Walk attendees sending me pictures! I would like to share some more with you tonight. Stay tuned for more pictures coming soon!

Mattie's close kindergarten buddy, Campbell, was at the Foundation Table at the Walk making a donation with his own money! He is a cutie and keeps Mattie's memory alive.

The family featured in this photo lives in VA, NJ, and PA. Some of the family members actually traveled to get to our event! What you should know is the children shown here raised over $200 in contributions. They solicited their friends and also contributed their own money. These are children who NEVER met Mattie! Simply amazing!










This was an event for ALL ages! This cutie was one of our youngest attendees. She came all the way from Seattle, WA!

In the midst of running around, I sometimes forget to take pictures with my friends at the event. Margaret, my friend and Mattie's preschool teacher, captured Karen and I for a split second before I jumped to the next activity!


I would like to end tonight's posting with two messages. The first message is from Kristen, Mattie's oncologist and my friend. Kristen and her son, Conor, attended the event, and I will share a picture of them shortly! Kristen wrote, "It was so wonderful for me to finally be witness to Mattie's walk! Congratulations on your success!!!!  I enjoyed seeing your parents Vicki and having an opportunity to talk/walk with them for a bit.  And...as today is Tuesday...I send you my thoughts this day and every day."

The second message is from my friend and colleague, Nancy. Nancy wrote, "I've been looking at the blog over the last few days and was able to feel the energy of the walk through your pictures. What a tribute to all of Team Mattie and especially Peter and you as you assembled this magnificent group of people to Walk the walk towards awareness of Pediatric Cancer and its impact on children and their families. It was wonderful to see Lauren and Noah looking so well. May they continue to thrive. The video tribute was wonderful too. Mattie resembled you at an early age. His look was unmistakable from 6 months on. As I looked at the collection of pictures, many of them already shown on the blog, I could see his desire to put on a brave face. His eyes are what gave him away. They showed his fatigue and at times, pain, during those hard months for all of you.  Something else I saw was the love and attention that the staff gave to him. Somehow each of these special human beings were able to maintain energy and spirit while working with Mattie. His many interests were encouraged and it is clear how difficult it is to part with any of his creations. I was happy to read that you reached your monetary goal and know that support will only increase following this successful endeavor."

Monday, May 23, 2011

Monday, May 23, 2011


Tonight's picture was taken in April of 2007, on Mattie's 5th birthday. Mattie had a zoo party that year, and I will never forget that day, because it wasn't only raining, it was pouring. Because of the down pours, we had the zoo to ourselves. Ironically all the animals were outside, and enjoying the rain. Mattie and all his friends thought walking around in the rain and getting completely wet was an adventure. Fortunately they all had a great time, and as you can see from this picture, Mattie had a great day! The hat that Mattie was wearing is something we still have as a remembrance of that special occasion. The hat is currently sitting on the head of a stuffed animal in Mattie's room.


Quote of the day: The healthy and strong individual is the one who asks for help when he needs it. Whether he has an abscess on his knee or in his soul. ~ Rona Barrett

I would like to share some of the photos I tried to take at the Walk. Peter and I are awaiting our professional photos. As soon as I get them, I will start posting them. However, the Foundation received a 4Imprint grant this year, with these funds, 4Imprint printed these wonderful drawstring bags for us. On the bag is our Foundation logo and naturally the bags feature one of Mattie's favorite colors - orange.

Last night I posted a picture of Lauren. Tonight I am posting a picture that features our other face of hope, Noah (an Osteosarcoma survivor). In this picture, Noah was walking around the track with Amanda (a Ewing's Sarcoma survivor).

This is Maya. Maya was a friend of Mattie's from Georgetown University Hospital. This is the second year Maya has come to the walk. When she arrived at the Walk this year she greeted me with a big hug. She is a very sweet, sensitive, and bright little girl. Maya showed me that she participated in Relay for Life earlier that day, and had Mattie's name painted onto her arm. She was walking for her friend, Mattie.

Many of our Faces of Hope are actually patients of Dr. Aziza Shad. As you can see Dr. Shad is standing next to one of her patient's posters. Trying to execute the faces of hope project was NO easy task for me. Parents are hesitant to share their child's face with an outsider. Naturally that is understandable. I was fortunate to generate 26 photos to display at the walk, and I was able to accomplish this because of my Georgetown Hospital home. I met many wonderful families while Mattie was being treated, so it made it a lot easier for me to contact these parents individually. It took time, but I am so proud of the 26 photos that I was able to display.  

This afternoon, my parents, Karen, and I went to a Paul Gauguin exhibit at the National Gallery of Art. I am somewhat familiar with Gauguin's works, but I had no idea about his personal life. Gauguin spent a lifetime traveling to distant lands in search of a primitive paradise. Believing that the key to unleashing his creativity was to be found in faraway places not yet corrupted by civilization, he sojourned to ever more remote areas in Europe, the Caribbean, and Polynesia. On arriving at each destination he discovered that the reality he encountered was very different from the paradise he had imagined. He had envisioned each new place as a sacred world where people lived simply, freely, and without inhibitions, but he instead found complex societies with their own difficult realities. He turned to his art to capture this elusive paradise, depicting an idealized, mythic dreamworld.

The "Maker of Myth" exhibit explores the ways the artist created myths over the course of his career. Gauguin knew that most potent myths were not wholesale fabrications but rather those that blended fact with fiction.

Karen took a picture of my mom and I right outside the Gauguin exhibit. We seem to blend right into the back drop of color.

A picture of Karen and I outside of the National Gallery.

Two paintings of Gauguin's intrigued me. The first one is entitled, Self Portrait, 1889. Gauguin portrayed himself as an artist deeply divided. The upper part of the canvas depicts the artist as a saint, a halo hovering above him as he averts his eyes from the tempting apples. In the lower half, Gauguin appears as the tempter, holding the biblical snakes between his fingers.

 
 
 
 
 
 
 
 
 
 
 
 

Vision of the Sermon (1888). In this painting the struggling angel is pushed to the background against a fiery red, witnessed by devout Breton women bystanders who populate more than half the canvas.
 
 
 
I continue to be quite exhausted from the Walk, and feel asleep twice while writing tonight. But very soon, I will give you a more comprehensive description of Sunday's fabulous Walk.