Saturday, May 27, 2017

Saturday, May 27, 2017

Tonight's picture was taken in May of 2008. We took Mattie to Calvert Cliffs in Maryland that weekend. This is a fascinating nature center, because you literally have to walk over a mile through the woods to get to the Bay. The wonderful part about this beach is that if you dig through the sand you can find fossilized shark teeth. You have to spend some time digging, but each time Mattie visited this beach he was always successful. In fact, Mattie kept a bag of his collected sharks teeth in the kitchen. Our visit there was always a full day endeavor of walking in the woods, time looking for sharks teeth, a picnic on the beach and then a walk back to the car through the woods. 


Quote of the day: Good order is the foundation of all things. ~ Edmund Burke

Peter and I spent the ENTIRE day organizing and then storing all our Walk materials. Literally we had piles of things on two levels. It was disconcerting to me! But literally we are so exhausted from the Walk that a full day of this today wasn't really what we needed. Nonetheless, it had to get done. There is something to be said to tonight's quote. I do believe that being organized helps to run our Foundation as well as this large event. 

In the process of going through bins in our large closet, I came across this laminated 8x10 sign. This was what signage looked like at our first Foundation Walk in 2010. Compare it to below. 

This was one of our posters at this year's Walk. It highlights our supporters. So we have moved away from the one sheet of paper to now a large 2 foot x 3 foot poster. 

We are fortunate that our complex provides us storage for all our Walk items for free. Peter and I went through all our posters and created an inventory for each of our six large boxes. However, because these boxes are going into the basement, they need to be wrapped in utility strength plastic to keep them from getting damaged. It was a large and heavy task which took hours!!! 

Literally we were living in a warehouse for over two weeks. Boxes, bins, posters, carts.... you name it, we had it!

In the distance you can see our six boxes of posters. In the lower left corner of the photo are some of our corn hole boards. Each of them had to be wrapped in heavy plastic. If I don't see this plastic any time soon, I will be thrilled!

 More corn hole boards!

These bins are filled with 5,000 colorful cups. We use the cups at the Walk to visually indicate the number of laps walked. 

Once all the items were packed, we loaded them on carts and brought them to storage. We can't get over how much space we have at home now that all these materials are gone. 

This was the morning activity. The afternoon activity involved putting away all the Walk materials we had on our second floor in our walk in closet. That may sound easy but that was another labor intensive task, which I am happy to have behind us! 

Friday, May 26, 2017

Friday, May 26, 2017


Tonight's picture of Mattie was featured at the Mattie Miracle Walk last Sunday. It was one of our Forever Heroes posters on display around the track. We feel it is important to show the real faces of children who survived cancer as well as those who lost their battle. However, whether a child survives or dies, there are psychosocial issues that arise from both the treatment and death. I am honored that so many families from around the world (as far as the Philippines) shared their children with us so that we could create this beautiful display. 


Quote of the day: The greatest gift in life is to be remembered. ~ Ken Venturi


Over the course of the next seven days, I will be posting photos from the Walk on Facebook, Twitter, Instagram, and Mattie's Blog. Today's photos highlighted our Forever Heroes posters at the Walk. This was a brand new addition to the Walk. In the past, Mattie Miracle only displayed posters of children who survived their cancer battle. However, after talking to my friend Ilona (who also lost an only child to cancer), at last year's Walk, I decided that Mattie Miracle had to address the reality of childhood cancer. Which meant acknowledging that five children a day in the United States die from this disease. I have been very cautious about talking about death and dying at our Walk because the majority of our Walk attendees are parents of healthy children. Seeing photos of children who died from cancer, maybe overwhelming to them and their children in attendance. But I decided that this had to be done and to push through my fears. We tried to display the posters in a sensitive and meaningful manner.... like a rainbow or half moon. 

I do think that introducing these posters to our walkers before the start of the actual event was helpful. I wanted our attendees to know that they would be seeing 66 faces of heroes, children who lost their battle to cancer. Though that maybe sad, I explained that bereaved families want their children to be remembered and that remembering their children is considered a gift. Quite frankly it is awful to lose a child to cancer, but that pain only gets magnified if we deem our children forgotten. I think this message resonated with our Walk attendees as I received many compliments on these posters. 

Two reasons that the Forever Heroes posters are vital to our event:

1. Though it is heartbreaking to see a sea of innocent children on posters who died, the reality is this happens to five children a day! In addition, on top of dealing with a lifetime of grief, it is far worse for families to feel that their children are forgotten and that their lives no longer matter. 
2. It is important that our attendees understand that the psychosocial issues do not END for families once their child dies. The death of a child remains with us always and bringing awareness to this vital issue is necessary. The psychosocial consequences of losing a child need to be discussed out in the open. 

We want to thank all of our Facebook families for sharing their heroic children with us. Mattie Miracle received a lot of feedback about how important, moving, and meaningful these posters were at the Walk.  Keep in mind that it took LESS THAN ONE DAY on Facebook to get close to 80 Forever Hero photos. Which speaks to how families are compelled to share their children, their stories, and to find meaning and purpose for this loss. 

Theses are our friends Ilona and Attila. They lost Chris, their only child, to cancer three years ago. I am very glad that our photographer was able to capture this heartfelt photo. They have established their own Foundation, The Chris Lantos Foundation, in memory of their son. 

These are our friends Wendy and Gavin Lindberg. They lost their only child, Evan, to cancer six years ago. They have established their own Foundation, EVAN Foundation, in memory of their son. 

Thursday, May 25, 2017

Thursday, May 25, 2017

Tonight's picture was taken in August of 2009. This was what our living room looked like. Mattie wanted Peter to put his tent up and he wanted to sleep inside of it. So Mattie was on one aeromattress and I was on the other. Once Mattie began treatment, he could no longer sleep alone. He needed constant supervision and assistance. Even at home Mattie was attached to an IV (which was literally inside the tent with us). Therefore Mattie had to go to the bathroom throughout the night, but because of his limb salvaging surgeries he was unable to move on his own without help. 


Quote of the day: Whenever I feel blue, I start breathing again. ~ L. Frank Baum


For the next week, I will be posting photos from the Mattie Miracle Walk. I am very grateful that we had a photographer capturing the event, because I was literally jumping from one thing to another and do not truly get to see, absorb or appreciate the event. Before the Walk begins, we invite teams to the track to get a group photograph. This year we had 18 teams. Not all the teams chose to pose for photos. But I am sharing all the groups that did below. We are thankful for our 18 teams, who in total raised over $30,000 for the Foundation.

This is Team RCC and Friends. Comprised of families Mattie went to preschool with. This team won the Top Team Fundraising Award this year. In fact, they have won this award three years in a row. This year they raised $8,307!

This is the Blessed Sacrament Bullfrogs Team. This team won two awards (and they have won these awards three years in a row):

1) Team with the largest number of registered participants by May 15
2) Walk Challenge Winners - as a team they collectively walked 60 miles and placed all their Green colored cups in our Wall. Each person earns a cup per lap they walked. 

This is Team SAINTS. Comprised of high school students at Mattie's school. This team won the Spirit Award. Several members of this team held bake sales on campus to raise money for the Foundation, as well as register students to attend the Walk. 

This is Team Kimber. This is the first time the Foundation had a team dedicated to a person who died from cancer (other than my team in memory of Mattie). I never met Kimber, but thanks to my friend Margy, I have gotten to know what a special person, pediatric oncology nurse, mom, daughter, wife, and friend she was. I am so happy and honored that Kimber's mom, dad, husband, children, and dear friends could attend the Walk and remember Kimber in such a meaningful way. 

This is the Book Club Team, whose captain (second from the right), Peggy Elkind, won the Top Adult Fundraiser Award. Peggy raised $5,534, and she is our top fundraiser three years in a row. 

This is Ryan's Rowdies. Ryan is 14 years old and lives in New Jersey. For his Bar Mitzvah project, he held an ice hockey fundraiser and generated $3,035 for the Foundation. Ryan, his grandmother, mom, dad, and sister all attended the Walk to personally present us with this large donation. Ryan received our Top Teen Fundraiser Award. 

This was the Aerials/Tigers Team in Support of Olivia Egge. This team was comprised of gymnasts who gathered together to support their fellow teammate who is battling osteosarcoma. This is the first year a Team was formed to support a child undergoing active treatment. 

This is Morgan's Wolf Pack Team. When I knew Morgan she was 7 months old. She was undergoing chemotherapy at the same time as Mattie. Peter and I got to know Morgan's mom and dad quite well as we both lived on the same hospital floor. It was an honor to have Morgan and her family with us, and was one of the highlights of my day. Since Morgan now looks like the picture of health! Morgan's team was the first childhood cancer survivor team we have ever had at the Walk.

This is Team TECH and Friends, comprised of a Virginia Tech student, her mom, and their friends. The captain of this team is Lexi, a 20 year old who I have gotten to know quite well this year, as she has been debilitated and ill all year. However, she had surgery last week and is now hopefully on the road to recovery. When you look at her (second row all the way on the right), she looks healthy, happy, and thriving.

Wednesday, May 24, 2017

Wednesday, May 24, 2017

Tonight's picture was taken in June of 2009, literally in the pre-op room before Mattie's sternotomy. If you look closely we taped a sign to Mattie's gown which read, "Dr. Chahine, give us a Mattie Miracle." Dr. Chahine was the surgeon who was performing Mattie's lung surgery. It was a tough morning for us and all of us were very anxious. 

Quote of the day: You may not have saved a lot of money in your life, but if you have saved a lot of heartaches for other folks, you are a pretty rich man. ~ Seth Parker

I have begun to go through hundreds of photos from this year's Walk. I love this one on the track, right before the Walk officially began. We had around 400 attendees this year! As of tonight we have raised $87,000 from the Walk!

Peter and I always say a few words before the event begins. Peter thanked our corporate and individual sponsors who donated in total over $30,000 to the Foundation and Peter discussed the mission of the Foundation.

I then said a few words about our financial goal for the Walk ($80,000), and how much money we raised as of the day of the Walk ($77,000). I then announced our award winners..........

• Top Adult Fundraiser: Peggy Elkind (over $5,000)
• Top Teen Fundraiser: Ryan Goldstein (over $3,000)
• Top Team Fundraiser: RCC and Friends (over $8,000)
• Team with the Most Registered Participants: Blessed Sacrament Bullfrogs
• Team Spirit Award: Team SAINTS

I then shared with our attendees the two major things we learned from Mattie's battle with cancer, and how this guides our work and mission. First, we learned that childhood cancer is NOT just about the medicine. Which is why we fund a child life professional at MedStar Georgetown University Hospital, provide free snack carts to families caring for children at two local hospitals, and have been leading the charge (through the development of psychosocial standards of care) for the inclusion of psychosocial care as part of comprehensive cancer care.   
The second guiding principle is that the psychosocial issues do not end when the treatment does. We felt the best way to visually show this was through our Faces of Hope posters, which feature the faces of survivors, and then new this year, our Forever Heroes posters. Our Forever Heroes posters feature the faces of children who lost their battle with cancer. The message we were trying to convey to the observer was that cancer treatment leaves survivors with long term psychosocial consequences and that losing a child to cancer, results in a host of life long psychosocial issues for the families left behind. 

The energy and enthusiasm of our walkers. 

Quite a crowd!

Walkers passed by our Faces of Hope (survivors of childhood cancer) posters. Each of the posters feature a child's face, name, cancer diagnosis, age, and fun facts about him/her. 

Tuesday, May 23, 2017

Tuesday, May 23, 2017 -- Mattie died 401 weeks ago today.

Tonight's picture was taken in June of 2009. Mattie was sitting in a wheelchair, at his physical therapy appointment. Linda (Mattie's child life specialist on the right) and Anna (Mattie's PT on the left) always thought outside the box in order to motivate Mattie to move his limbs and actively participate in therapy. That day they had Mattie moving his legs and feet by putting shaving cream on a mirror. Mattie got a real kick out of putting his feet in this mess and moving it about the mirror. What I really appreciated was that Anna and Linda understood Mattie's level of pain and exhaustion, and yet also knew the importance of keeping his body moving. Therefore these clever activities which Mattie deemed as fun really were not only entertaining but therapeutic. I would add therapeutic not only physically but psychologically (as these activities were a great distraction from our reality). 


Quote of the day: Life never ceases having a meaning for a humble person. The freedom of choice, the sovereignty that we hold over our own souls, enables a person to discover the meaning of his or her own life every day, even in suffering or death. ~ Kilroy J. Oldster


My parents and I visited the Larz Anderson House today in Washington, DC. It is hard to believe I never knew about this great house! I am grateful to the folks at Tudor Place for telling me about it. I bought tickets for my parents and I to tour Tudor Place today, but it shows how out of it I am, because when we got to the house, we realized we toured it two years ago. The staff at Tudor Place were very thoughtful and reimbursed our admission fees and suggested other local properties to visit. 

The Larz Anderson House is now the home of The Society of the Cincinnati. I have to admit I NEVER heard of the Society. But the Society is the nation's oldest patriotic organization, founded in 1783 by officers of the Continental Army and their French counterparts who served together in the American Revolution. Its mission is to promote knowledge and appreciation of the achievement of American independence and to foster fellowship among its members. Now a nonprofit educational organization devoted to the principles and ideals of its founders, the modern Society maintains its headquarters, library, and museum at Anderson House in Washington, D.C.

In the spring of 1905, Anderson House was completed and took its place as one of the capital city's most fashionable mansions—a "Florentine villa in the midst of American independence." The firm of Arthur Little and Herbert Browne of Boston designed the mansion as the winter residence of Larz Anderson, an American diplomat, and his wife, Isabel, an author and benefactress. For more than thirty years, the couple enjoyed their Washington home as a showcase for their art collection, a backdrop for high society galas, and a home from which they explored what they considered "the most beautiful of American cities."

At a cost of nearly $750,000, Anderson House included a walled garden, tennis court, and three-story carriage house and stable. The fifty-room mansion has eclectic interiors, dominated by English and Italian influences, feature the painstaking work of craftsmen who adorned the house with carved wood walls, gilded papier-mâché ceilings, ornate iron staircases, and intricate marble floors. Anderson House was also outfitted with all the latest conveniences, including electricity, central heat, telephones, and two elevators.

Larz and Isabel Anderson intended their Washington home to be a grand setting where the rising diplomat could entertain American and foreign dignitaries. The Andersons would distinguish themselves among the capital's most sought-after hosts. During the Washington social season—generally between New Year's Day and Easter—the Andersons held diplomatic and inaugural receptions, formal dinners and luncheons, concerts, and dramatic performances. Their guest lists included Presidents William H. Taft and Calvin Coolidge, Gen. John J. Pershing, Henry A. du Pont, and members of the Vanderbilt family.

The charming backyard, which is NOW used for weddings and other private events!

To the Andersons, their Washington home represented the culmination of what America's founders, including George Washington, hoped their capital city would become—a grand, modern city to rival European capitals, but with a patriotic identity and a sense of history that would make it distinctly American. When Larz Anderson died in 1937 with no children, his widow oversaw the gift of Anderson House and its contents to the Society of the Cincinnati, of which Larz had been a devoted member. 

Imagine that in front of this fireplace once stood Winston Churchill. 

Quite a dining room. You should note that the majority of entertaining space was on the second floor of this home. 

The home is filled with incredible tapestries and paintings. Art which filled up an entire wall!

The entrance doors to the front of the home. My parents are standing under them. But you can imagine the grandness of this space in the early 1900's!

Monday, May 22, 2017

Monday, May 22, 2017

Tonight's picture was taken in May of 2009. I remember taking this photo as if it were yesterday. This radio flyer wagon was given to Mattie by his child life specialist, Linda. Mattie LOVED this wagon. On this particular day, Mattie wanted to go outside and get fresh air, but did not want to ride in his wheelchair. So I put him in the wagon and we walked around the neighborhood. In fact, I even gave Mattie my camera

 and he was snapping photos along our journey. This was a Mattie photo, clearly viewing me from his perspective. To this day, we still have this Radio Flyer. It sits on our deck. 








Quote of the day: You need to be aware of what others are doing, applaud their efforts, acknowledge their successes, and encourage them in their pursuits. When we all help one another, everybody wins. ~ Jim Stovall


Today was a day of digging out from the Walk. Well in all reality the digging out process started last night. My lifetime friend, Karen, was visiting from New York and took on dismantling and reorganizing our walk CUPS. Around 5,000 of them to be exact. It isn't an easy task, but I am thrilled she did that for us, sorted through volunteer name tags and helped us begin to organize things in piles. So that eventually we can put things back into storage. Putting the Walk together may look easy, but there are many moving parts to it, and therefore that means great logistics and labor. 


One of our supporters dropped of a large toiletry drive collection for us at the Walk. The items were plentiful but all mixed up together. So my mom and Karen took on the sorting of items project this afternoon. I am so happy to have that help because I am truly tired and the notion of putting Walk things away at this point is exhausting. Will be making another push this week to try to get all the items back in storage so that our home can look more like a home again and NOT a warehouse!

I am proud to report that our Walk thermometer now reads over $86,000! So we have exceeded our financial goal, thanks to the generosity of our incredible supporters. 

Sunday, May 21, 2017

Sunday, May 21, 2017

Tonight's picture was taken in May of 2009. It features several of my favorite people.... Linda (Mattie's child life specialist), Anna (Mattie's physical therapist), and Meg (Mattie's child life intern). This photo illustrates Mattie in a physical therapy session. Which was never boring with Mattie! Meg had a way to inspiring Mattie to move his body and compete against her. Meg would ham it up and as you can see Anna was pushing Meg out of the way so Mattie could win the race. Meg has a personality similar to Mattie's and he gravitated to her right away. We will always be grateful to Meg. 


Quote of the day: I believe the power to make money is a gift from God...to be developed and used to the best of our ability for the good of mankind. ~ John Rockefeller


I am happy to report that the Walk generated $85,647!

This is a photo of Meg and I together today. I was very honored that Meg came to the walk with her husband and Noah, her son. 

A group of girls gathered together for the Walk. 

This is a photo of Team Kimber. Kimber was a PED/ONC nurse who died two years ago from kidney cancer. These are Kimber's four children who participated in the Walk today. It was an honor to have them. 

This is Morgan. Morgan is a childhood cancer survivor who was treated for cancer at the same time as Mattie. Morgan was diagnosed at 7 months. Now 8 years later, she is about the age that Mattie was when he died. Morgan was one of my highlights from today. 

This is a photo of our Forever Heroes posters. We received these photos of children who died from cancer through our Facebook campaign. My goal was for people to understand that the psychosocial issues don't end when the treatment does, and that these issues continue into survivorship and bereavement.  

I knew that seeing these photos would be sad today, but as I told attendees parents who lost a child to cancer want their child remembered. The worst thing besides losing a child, is to be forgotten. 

Our Lego train display.

A photo of Dr. Shad (the physician who assisted Mattie as he was dying) with Kimber's family. 

Georgetown Cupcakes featured at the Walk, with the Mattie Miracle logo.

I took a photo with Anna Leis and her family. Anna is the owner of DC Empanadas and isn't only a major donor but catered our walk today with her food truck. She donated 100% of the food proceeds to us. Absolutely amazing lady and I got LOTS of food compliments. 

Check out the gymnastic team who were at the Walk today. Got to love the hand stands no?