Saturday, May 26, 2018

Saturday, May 26, 2018

Tonight's picture was taken in June of 2009. That day we went over to our friend's house. They had a swing in their backyard. Mattie wanted to go on the swing, but was afraid to do it on his own. Most likely for many reasons.... he did not have the physical strength necessary to swing and because he was concerned he would fall and injure himself. Given that three out of his four appendages were operated on, it was a very valid fear. 


Quote of the day: For every minute spent organizing, an hour is earned. ~ Benjamin Franklin

After the Walk is over, we literally start that evening disassembling the materials we brought on-site to the event. It takes us about a full week to reorganize items before we are ready to wrap everything back up in heavy plastic sheeting, to bring to storage. Today was wrapping and storage day. 

Peter set up a wrapping station in our living room. I am not sure what is more challenging the wrapping or the loading of trolleys to bring things to storage. Either case, we took some photos of the before and after today!

Do you get the picture!? This is what our living and dining rooms looked like. They were filled with boxes, posters, pop up tents, and other Walk items. 

Stacks of stuff everywhere! Yet we can't just throw things back into storage like this. We have to be methodical about the items. We take an inventory of what we have and then each item is wrapped to protect it from any unforeseen issue in storage. 

Fortunately we have a large space at home that we are able to effectively stack things and still have enough room to move around. However, both Indie and Sunny are thrilled to have the entire space back for themselves. 

This was Sunny today! He headed to the couch to watch Peter wrapping items. 

This is the after photo! All large Walk items are safely wrapped and back in storage. We are thrilled!!! 

Not boxes, tents, or posters!!! OH MY!!!

Friday, May 25, 2018

Friday, May 25, 2018

Tonight's picture was taken on May 21, 2009. We were given tickets to take Mattie to a Nat's game. Mattie was like me, not a huge sports fan. Nonetheless, we took Mattie as we thought this would be a diversion. When we entered the baseball stadium, I can't tell you how many people looked at the three of us as if we were from another planet. They looked Mattie up and down! The fact that I did not smack someone or argue with them was a feat. Because I had several choice words to dish out. But my number one goal was to protect Mattie, so I did not expend energy on clueless people. Yet I recall that Army representatives were at the game and greeted visitors. They were giving out free t-shirts that said, Army Strong. I remember they handed Mattie a t-shirt and said that he earned it as he was very strong. That interaction was probably the best part of that day. 


Quote of the day: You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly – that still hurts when the weather gets cold, but you learn to dance with the limp. ~ Anne Lamott

At the Walk this year we had 19 teams. Teams are vital to the Foundation as they provide energy and expand our support community. In addition, many of our teams also fundraise and help us meet our financial goal. 

This was Team SAINTS. It is comprised of high school students at the St. Stephen's and St. Agnes School. The team was captained by Mattie's friend Abbie. It is hard to believe that Mattie would be a sophomore in high school if he were alive today. This team won the spirit award, as they held bake sales every Friday for a month in order to raise money for Mattie Miracle and register students to attend the Walk. 

This is Team Kimber. The captain of this team is my friend, Margy. Margy is the lady in the wheelchair, who is dealing with her own battle with ovarian cancer. Cancer was not going to hold Margy back from attending the Walk. Remarkable!!! 

Team Kimber joins us two years in a row. Kimber was Margy's friend who died from kidney cancer. Want to know who Margy's team mates are? Try Kimber's parents (who lost two children to cancer), Margy and Kimber's husband, and Kimber's children!

This is "That Walk Team." The captain is my friend Peggy. Peggy's team raised over $10,000 and she is our top fundraiser four years in a row. 

This was a new Walk team that joined us this year. They are from TC Williams High School. It featured several members of the School's robotics club. With the robot they designed of course! 

This was the Blessed Sacrament Bullfrogs team, captained by my friend Jane. The Bullfrogs are always our largest team and they are also the team that completes the Walk Challenge first! Walking 60 miles collectively. 

This was team RCC & Friends, captained by my friend and board member Ann. This team is comprised of families we know from Mattie's preschool. This team has joined us four years in a row and is always our top fundraising team. They raised over $10,500!

This was Team MedStar (the hospital where Mattie was treated). It was captained by Bob, who was Mattie's surgeon. His team mates feature Mattie's favorite HEM/ONC nurse, Tricia, and ALL of her family. Including Melo, the dog!







This was team Sunshine. It was captained by my friend Liz. In the second row on the left are Olivia and her mom, April. Olivia is an osteosarcoma survivor. 

Thursday, May 24, 2018

Thursday, May 24, 2018

Tonight's picture is a classic!! It was taken in June of 2009. Mattie was in the hospital recovering from his sternotomy (a surgery performed to remove tumors in the lungs). Pictured with him were Sarah Marshall and Ellen. That day, Sarah Marshall was Mattie's day time oncology nurse and Ellen, was his night nurse. As you can see they were giving Mattie kisses. In all reality Mattie was so ill, frail, and had undergone so many surgeries that it wasn't surprising someone wanted to kiss him and make it better. Sarah Marshall was our nurse the night Mattie was dying. The hospital assigned her NO other patients but Mattie, and I can assure you she did not have a minute's peace as there wasn't enough pain meds she could pump into Mattie's small body. Our room looked like a war zone, and Sarah Marshall was alongside us the whole time. Mattie's death was a painful five years. After Mattie died, Sarah Marshall switched from an oncology nurse to a pediatric intensive care nurse. I am quite certain that this decision was influenced by Mattie's death. 

Quote of the day: What we have once enjoyed deeply we can never lose. All that we love deeply becomes a part of us. ~ Helen Keller

Tonight's photos feature the 5,000 colorful cups we had at the Walk. This rainbow cup display is set up by the track. So when walkers pass it, they can grab their team's colored cup from a volunteer. 

Two of our dedicated volunteers, who have been with us from the beginning. Tina and Tanja were distributing cups on the track to walkers.

Walkers then walk their cups over to the chain link fence, which is our challenge wall. The challenge is for teams to work together to fill this fence. Walkers hand their cups over to another set of volunteers behind the fence who stick the cups through the fence and then count cup colors. 

A photo of the challenge wall being filled!

This year we had a girl scout troop and their leaders helping us with cup counting. This enables teams to know how many laps they have walked. In essence it is a colorful score board. 

The big orange letters spell out CHALLENGE WALL. 

This is our actual score board. As volunteers count cups, they update the board. This is the fourth year in a row that the Blessed Sacrament Bullfrogs team won the cup challenge. They were the first team to place 240 cups in the wall, or in other words collectively the team walked 60 miles!

 Walkers grabbing cups!

The first lap is always the hardest, until walkers get the hang of what color cup they are and where to pick up their cup and drop it off at the challenge wall. However, our walkers are fast learners and you can see the walk itself produces smiles and fun. 

Wednesday, May 23, 2018

Wednesday, May 23, 2018

Tonight's picture was taken in June of 2009. Mattie was having a visit to the clinic and in typical Mattie fashion was full of antics. In fact, he and Jessie (his art therapist) were having wheel chair races in the middle of the clinic. This was the beauty of Mattie Brown. Even dealing with cancer, he had a life about him which caused people to gravitate to him. 


Quote of the day: Grief is learning that it’s possible for a part of you to die while you are still living. ~ Uma Girish


Tonight's Walk photos, capture the actual Walk.......................................

Before the walk actually began, Peter and I both greeted our participants. Peter gave a wonderful update about the Foundation's activities, and I shared Walk facts such as our fundraising totals, our top fundraising individuals and teams. I also acknowledged that we had four children with cancer in attendance and wanted to commend their courage and strength. In particular, I wanted to remind everyone that we walk for these children and children like them. I then explained that everyone would be walking passed 90 hurdles with posters on them along the track. I mentioned that if each hurdle represented a child with cancer, then these 90 hurdles would illustrate the number of children diagnosed with cancer EVERY two days in the United States. In addition, these 90 hurdles would also reflect the number of children who die in the USA in less than one month's time. 

Top Individual Fundraising Awards

Adult: Peggy Elkind ($7,104)
Teen: Abbie Henshaw ($837)

Top Team Awards

Fundraising: RCC and Friends ($10,574)
Most participants by May 15th: Blessed Sacrament Bullfrogs (45 members)
Spirit: Team SAINTS (for hosting weekly bake sales at school, to raise funds and to register students for the Walk & Family Festival)

Meanwhile, behind us on the track is Herman, our photographer. He was standing on a ten foot ladder so he could capture the extent of the crowd!

The crowd, as seen from atop of the ladder.

A close up of the crowd. You may notice a large robot on the right hand side. This robot was brought to us by a local high school robotics club who participated at the Walk. 

After photos are taken, the Walk begins. Literally people have to walk around Herman on the ladder without knocking him over!!!

Holding the banner from left to right are:

Dr. Aziza Shad (one of Mattie's oncologists, and the doctor we will be supporting at Children's Hospital at Sinai), my Mom, Eugene and Ronee (close family friends), and Peggy (our top fundraiser).

The lady you see waving and pushing a baby carriage, is a mom with a daughter in active treatment. This woman's husband is behind her and the little girl is on his shoulders. We are so happy they could join us!

Friends and family waving! The couple in the front are my cousins Maria and Peter. They came all the way from Michigan to attend the Walk. So this Walk was like a mini family reunion for us. 

Do you see the two ladies... one in a wheelchair and the other using a walker? Well this is my friend Margy and my friend in cancer, Patti. Margy is now courageously dealing with her own cancer battle, this is after she has helped hundreds of children cope with cancer through her role as a play therapist at a local hospital and then as a  cancer foundation leader. Patti is a friend of Margy's and believe it or not, Patti lost both of her children to cancer. So Patti and I see eye to eye, as we are now both childless. This is the second year in a row that Margy has captained Team Kimber. In memory of her friend and colleague, Kimber (who was Patti's daughter), who was a pediatric oncology nurse. 

This track is huge which makes our crowd of 400 people look small!

Pictured in yellow is Leslie. Leslie was Mattie's kindergarten teacher. Next to Leslie is Jaylene. Jaylene is the new head of the lower school, who I had the pleasure of meeting for the first time.

This was participants walking passed our Forever Family posters. This poster series was NEW this year. The point of the series is to illustrate that childhood cancer is a family disease, and the disease impacts families at every stage of the journey from diagnosis, throughout treatment, into survivorship or end of life and bereavement. 

On the posters are photos of families whose child has been diagnosed with cancer. In addition, the poster highlights the five words that each family members gave us to describe the impact of cancer on their lives. In all cases, the five words highlight psychosocial issues and concerns and NOT the medicine. No surprise to Mattie Miracle, as we firmly believe that childhood cancer is NOT JUST ABOUT THE MEDICINE. 

Tuesday, May 22, 2018

Tuesday, May 22, 2018 -- Mattie died 453 weeks ago today. 

Tonight's picture was taken in June of 2009. My friend Christine, held Mattie's 7th birthday party at her house and she arranged for Reptiles Alive to perform for the children. This was right up Mattie's alley since he LOVED snakes and basically anything that creeped me out. 

I think it is quite special that now ten years later, Reptiles Alive came to our 9th Annual Walk & Family Festival to entertain our participants. They hosted a 30 minute show, followed by a 30 minute meet and greet with exotic animals. It seems like we have come full circle now. 


Quote of the day: Never forget that you are one of a kind. Never forget that if there weren't any need for you in all your uniqueness to be on this earth, you wouldn't be here in the first place. And never forget, no matter how overwhelming life's challenges and problems seem to be, that one person can make a difference in the world. In fact, it is always because of one person that all the changes that matter in the world come about. So be that one person.  ~ R. Buckminster Fuller


Tonight's feature photos from the Walk were taken during the Reptiles Alive show!

This is Rachel. She is the educator from Reptiles Alive who spent time with us at the Mattie Miracle Walk. As you can see she brought all sorts of snakes to the event!

Kids and parents of all ages were fascinated! Look at these expressions. 

Rachel told me that the kids were very animated, bright, and inquisitive! So she loved her audience and her audience seemed very engaged with her show. 

Look at the focus and concentration!!!

A show that appealed to big and smaller children. Given that this was our first year having a Reptiles Alive show, I wasn't sure what to expect! But I am so happy it was a hit. 

I took this photo of Rachel with Peter and my mother in law, Barbara. I think it is a priceless shot and I know Mattie would have been proud!

This snake's name is Sunglow. Believe it or not, I even touched Sunglow. Can't say I loved it but I did not freak out as I usually do around snake. With that said, I think I was brave because Rachel was holding this fellow. If I saw this thing out in the real world, I most certainly would have bolted the other way. 

Monday, May 21, 2018

Monday, May 21, 2018


Tonight's picture was taken in May of 2009. Mattie surprised me with a gift for Mother's Day. A gift that he worked with his art therapists to create. They made paper tissue flowers, but what you can't see was Mattie made a red clay vase for me in clinic. This vase holding the paper tissue flowers remains in our living room today. 










Quote of the day: Grief is love with no where to go. ~ Uma Girish


Over the next week or more, I will be highlighting photos from our Walk & Family Festival that was held on Sunday! Here are three top Walk facts:

1) There were over 400 people in attendance
2) The event raised over $97,000 (exceeding our goal by over $12,000)
3) Our 19 teams raised $41,232

Last year, Mattie Miracle did a Facebook campaign. We invited families to submit photos of their child who died from cancer. In addition, we asked parents to supply their child's name, age, diagnosis type, and five words that describe their child. These posters became our "Forever Heroes" series. It is a very haunting and meaningful visual at the Walk. This year, I explained to attendees that if the hurdles around the track represented a child with cancer, then this would illustrate the vast number of children who die in less than one month's time in the US. It is a very sobering visual, in which children lose their battle with cancer daily. In fact, four children a day in the US, die from cancer. This is tragic for parents, but what is even more tragic is when people forget about the lives of these children. As tonight's quote points out.... grief is love with no place to go. It is our hope that the posters provide a place for that love and also the faces and lives of these children are never to be forgotten, but instead shared with others in the community. 

A close up of our challenge wall and gold pinwheels. As gold is the official color for childhood cancer. Those of you not familiar with our walk, maybe saying, what's with the cups?! The cups help track the number of laps our teams walk around the track. So a cup a lap! 

We did a second Facebook campaign this year. This campaign generated our "Forever Family" poster series. The point was to emphasize that childhood cancer is a family disease and every one in the family is affected. In addition, we encouraged our participants to read the five word description, these families provided, of how cancer has impacted their lives. The words they used were purely psychosocial in nature, with no mention of the medicine. As families know from personal experience, childhood cancer is NOT just about the medicine. 

Families play a vital role in the health and wellness of their children and must be included as part of the cancer treatment team for the medicine to be effected. We wanted to illustrate the importance of family and also the simple fact that some things are bigger than cancer, such as family. Family lasts forever, regardless of diagnosis, treatment, survivorship or grief and loss.