Thursday, May 26, 2016

Thursday, May 26, 2016

Tonight's picture was taken on June 1, 2002. Mattie was almost two months old. As you can see he was quite alert and tuned into his environment. As I always joked... Mattie was born on!







Quote of the day: There are as many worlds as there are kinds of days, and as an opal changes its colors and its fire to match the nature of a day, so do I. ~  John Steinbeck

Our first Corn Hole Tournament, held at the Mattie Miracle Walk, was a hit! It was a game for all ages and the energy it generated on the field was memorable. We want to thank the St. Stephen's and St. Agnes School Girl Scout troop for working with Mattie Miracle to create, assemble, and paint all six of our hand crafted corn hole boards! They did a beautiful job incorporating our logo (the sun with seven rays, a ray for each year of Mattie's life) on the boards.

A BIG congratulations to our tournament winners:

First Place: Mike Grusholt (winner of an iPad Mini 2)

Second Place: Alice Hurley (winner of two Nats baseball tickets, 4 Potomac Nationals tickets, and 10 raffle tickets)

Third Place: Sue Whitney (winner of a $25 gift card to the Great American Restaurants Group, and 5 raffle tickets)

The SSSAS Girl Scout Troop, their dads and grand dads working with Peter to assemble the Mattie Miracle Corn Hole Tournament boards. Thank you scouts!!!

The Girl Scouts presented Mattie Miracle with several artistic designs for the boards. One design in particular resonated with us. The girls incorporated the Mattie Miracle logo beautifully onto the boards. Boards which will be used each year at our annual walk.

Congratulations to Mike (Mike is Tricia's husband. Tricia was Mattie's favorite HEM/ONC nurse)! Mike and Tricia love corn hole. They play it at home! So Mike brought a special kind of life and energy to the game.

Congratulations to Alice on winning second place! We are so happy that adults and teens were winners this year!!!

This is Sue. She won third place in the Corn Hole Tournament, but she is also one of the Girl Scout Troop leaders at the St. Stephen's & St. Agnes School. Sue has encouraged her Girl Scouts to volunteer with Mattie Miracle over the last seven years and truly promotes our mission with the next generation.

An activity for ALL ages! The boards are beautiful, aren't they?!

Meet Debbie! Debbie has been our kid activity coordinator for seven years at our Walks. Peter and I knew we needed Debbie's skills this year to help run the corn hole tournament. Being that this was our very first tournament, we wanted it to run as smoothly as possible and for players to have fun.

Thank you Debbie for sharing your time, energy, and skills with us each year.

Corn hole was a buzz at the Walk! THROUGHOUT the day... both during free play and the tournament. We want to thank all our St. Stephen's & St. Agnes School and Bishop Ireton student volunteers who assisted us at corn hole and other activities at the Walk. We couldn't do this without you.

Doesn't this look like fun?!

This fellow is the grandson of Debbi, Mattie's sedation nurse angel. We were so happy to have Debbi and her family join us at the Walk this year!

We love this photo of Jake. Both concentration and style! Jake's mom is Jane. Jane is our Walk Team Coordinator and is instrumental to Mattie Miracle. Teams are a vital part of our Walk event and Jane helps me reach out to teams and brainstorms with me ways to get teams formed and engaged in the Walk. 

Wednesday, May 25, 2016

Wednesday, May 25, 2016

Tonight's picture was taken in May of 2002. Mattie was about a month old and though he may look peaceful, Mattie was NOT really a napper. At all! As a baby he would power off for thirty minutes, but that was the extent of it and we never knew when it was going to happen. It was impossible to get Mattie on a sleeping schedule, both during the day and at night. Night was definitely more problematic and I actually had to read books on sleeping methods. Mattie showed me that sleep doesn't come naturally, but it is something you have to be trained to do. 



Quote of the day: The strength of the team is each individual member. The strength of each member is the team. ~  Phil Jackson

We are proud of our 14 Walk Teams who collectively helped us raise $30,000 to support the psychosocial needs of children with cancer and their families! There was even a virtual walk team in Texas who joined us this year.

A BIG THANK YOU TO......................

RCC MOMS ROCK (Team Captain: Ann Henshaw)

The Bookclub (Team Captain: Peggy Elkind)

Leis' Luchadores (Team Captain: Haley Leis)

SSSAS 2020 (Team Captain: Charlotte Gehrs)

Mattie Moon (Team Captain: Victoria Sardi-Brown)

Team Voxiva (Team Captain: Caroline Anderson)

Team Tilch (Team Captain: Patricia Tilch)

Blessed Sacrament Bullfrogs (Team Captain: Jane Pisano)

Team Flames (Team Captain: Carolyn McFadden)

SAINTS (Team Captain: Katharina Harding)

BI Charity Through Medicine Club (Team Captain: Isabel Anderson)

Walking With Purpose/Blessed Sacrament (Team Captain: Jane Pisano)

Arlington Aerials, Xcel and Tigers Gymnastics (Team Captain: Tina Lytle)

Love from the Heart of Texas (Team Captain: Jennie Burger)

This is a photo of the combined St. Stephen's & St. Agnes School teams.... SSSAS 2020 and the SAINTS Walk Teams!!! Charlotte was the captain of the SSSAS 2020 walk team and was our top middle school student fundraiser and the SAINTS team WON the CUP CHALLENGE AWARD (for walking over 60 miles on the day of the event).

We congratulate RCC Moms Rock walk team for winning the top team fundraiser award two years in a row. We are proud of you!! The team raised over $6,000!

Team Voxiva walked over 189 laps around the track, almost 50 miles collectively! Voxiva is also a corporate sponsor of the Walk and we are appreciative of the fact that they raise funds for Mattie Miracle through their walk team as well!!! 

This is Team Bullfrogs, from the Blessed Sacrament School. This teams has been a part of our Walk two years in a row!!! We love their spirit and energy they bring to our event.

This is the Book Club Team! The captain of this team, Peggy Elkind, has been our top adult fundraiser two years in a row. Peggy raised over $4,000 for us this year.

The handsome teen on the right is Zachary. Zachary and Mattie went to preschool together and were the closest of friends. He was with Mattie at the first Mattie March (2009) and has been a part of our Walk for seven years in a row. 

This is team Aerials, Xcel, and Tigers Gymnastics!!! A new team first year. This talented group of young people participate in our annual item drives which stock our FREE snack cart at MedStar Georgetown University Hospital. We welcome them to our Walk family!

Tuesday, May 24, 2016

Tuesday, May 24, 2016 -- Mattie died 349 weeks ago today.

Tonight's picture was taken on May 5, 2002. I did not take Mattie out to public spaces in the beginning, but we did go out with Peter's family to an outdoor area filled with restaurants and shops. Mattie handled the day very well and seemed to enjoy the outing. While out, he received this wonderful bunny, a bunny which Mattie held onto for quite some time. It was one of his favorites and overall Mattie was NOT a stuff animal kind of kid. 


Quote of the day: The leader who exercises power with honor will work from the inside out, starting with himself. ~  Blaine Lee

Mattie Miracle LOVES it volunteers! There were over 60 volunteers at the Walk this year, many of whom have been with us since the Foundation was incorporated in 2009. We could never host such a successful event without these dedicated individuals.

We are also VERY GRATEFUL to our community partners who attend our Walk and provide food, fun items, and activities for attendees. All the proceeds from those sales were donated to Mattie Miracle. A BIG THANK YOU TO.........................

1) Clyde's of Tysons Corner
2) Rack Impact Entertainment
3) Play-Well Teknologies
4) Seeds of Hope
5) Sprout Kitchen Gardens
6) Bob Weiman and his SSSAS 5th Grade Magic Show

Christine and Jennifer have run our registration tent seven years in a row! Working registration isn't as easy as it may sound. Large groups can show up at one time and this team has to process them into the event and also accept donations. 

This dynamo on the ground dressed in black is Carolyn. Carolyn has been our raffle chair for seven years and is invaluable, along with her husband Don, who heads up our Walk logistics team!

This adorable couple runs our bake sale. Marisa has been a long standing volunteer with Mattie Miracle and even helped care for Mattie when he was battling cancer. Marisa worked with Georgetown Cupcake this year and surprised me with cupcakes that had the Mattie Miracle Logo on them!!!

Can you see the sun on the cupcakes?!

This was the fantastic Clyde's of Tysons Corner team who worked with us this year. Thank you Heather (Sous Chef) and Eddie for working so hard! With 30MPH winds and cool temperatures, hot foods were very popular and needed this year. We are deeply grateful to Clyde's of Tysons Corner for their continued generosity with the Foundation. 

Two years ago I contacted Gigmasters (an on line entertainment referral site) looking for a DJ for our walk. I put out a request and several DJs responded to me with various price quotes. Sergio's quote caught my attention because he gave me a price quote of $0. Sergio said he would offer his services pro bono because he valued Mattie Miracle's work and wanted to help us raise funds. Needless to say we hired Sergio, and he is now a part of our Walk family! Thank you Sergio for keeping us moving to a great beat!!!

Food operations at the Walk is NO EASY feat. First our friend and board member, Ann, sends out requests in the community for snack and drink item donations! Then Ann and the entire Tilch family transport and set up all these items at the food truck on the day of the event. Much thanks Ann, Patricia, and Bernie for seven years of incredible service.

The teenager in the blue fleece is Ellie. Ellie and Mattie went to preschool together. At each Walk, Ellie features and sales hand crafted items to walk participants. 100% of the proceeds go to Mattie Miracle. This year's item was her Seeds of Hope flower pots! Don't you just love these hand painted pots with forget me not seeds in them?!

Thank you Play-Well Teknologies for providing hands on fun, creativity, and engineering challenges to kids of all ages! This is a VERY popular tent at our Walks.

This is Bob Weiman, AKA.... the Magic Man. Bob taught Mattie how to do magic while he was battling cancer. In fact, at the Mattie March, and event that his care community planned for him in May of 2009, Mattie performed several tricks with Bob to a large audience. The Walk wouldn't be the same without Bob. It is a meaningful tradition!

Thank you Judy (COO of Sprout Kitchen Gardens) for joining us this year and helping our participants sprout their own gardens!!!

Monday, May 23, 2016

Monday, May 23, 2016



Tonight's picture was taken in May of 2007. Mattie was five years old and as you can see full of life and happy to be outside and on our deck. Mattie preferred being outside, in the fresh air, and experiencing nature. This "got lobster" shirt seemed absolutely perfect for him. It was bold, red, and made a statement. Not unlike Mattie!









Quote of the day: Left alone, no matter at what age or under what circumstance, you have to remake your life. ~  Katharine Graham

I ran around today doing chores and one of my stops was the post office. While waiting in line to mail something, the woman in front of me turns around and says to me..... "I LOVE your necklace. It is beautiful and must have been given to you by someone who loves you a lot." 

I spared her the story or the symbolism behind this piece, but instead thanked her since she meant the feedback in the nicest way. 

The irony is NO ONE gave me this necklace, I gave it to myself. While Peter and I were in New York City last year for a conference, I bought the pendant from an artist at the conference. She was displaying her creations at a booth. However, I did not like the necklace the pendant sat on. So indeed, I brought it back to DC and gave the pendant to my friend Laurie. Laurie creates her own jewelry and is an artist by heart. Laurie is the one who transformed this necklace. This necklace is important to me for multiple reasons. First it features a moon and Mattie's nickname in preschool was Mattie Moon. Second, the saying, "I love you to the moon and back," is something Mattie and I always used to say to one another. Lastly, check out the star hanging down off the moon. It features the letter M. M for Mattie. Actually when the artist designed the pendant, she used the letter M, because her daughter's name begins with M. But my luck, it works for me too! 

Tonight, I am featuring more photos from this year's Walk. Check out some of our faithful supporters..... childhood cancer survivors and their families, as well as families who lost a child to cancer. 

Three beautiful childhood cancer survivors..... Brandon, Bridget, and Zoe!

Pictured from left to right are: Holly (Bridget's sister), Brandon, Tricia (Mattie's favorite HEM/ONC nurse), Bridget, and Zoe! Brandon, Bridget, and Zoe are all childhood cancer survivors. Also in this photo is Tricia, a nurse who provided care to all of them! They got into the spirit of the Mattie Miracle Walk, so much so that when the "Chicken Dance" was played they showed us that they are ANYTHING but chicken!

This is Bridget's family! We met them when Mattie was battling cancer. While Mattie was battling so was Bridget. Bridget is hopefully in remission now, after 7 years of fighting this disease. 

Pictured from left to right are Holly, Vicki, Cathy (Bridget's mom), Mattie's best buddy Brandon, and George (Bridget's dad).

Pictured with Peter and me is Brandon (Mattie's best buddy), Toni (Brandon's mom), and Gigi (Brandon's niece)! Mattie and Brandon were both diagnosed with cancer around the same time, and became the closest of friends.The walk wouldn't be the same with the Johnson family in attendance. 

Mattie had a very special friend named Jocelyn. Jocelyn and Mattie both battled osteosarcoma together. In many ways Jocelyn was not only a friend but a mentor to Mattie. There was a difference in their ages, but they got along splendidly. Jocelyn helped normalize Mattie's first limb salvaging surgery for him. She took this upon herself to do because she knew such a surgery would be daunting for a six year old. Peter and I tried to help Mattie, but since we hadn't experienced such a surgery personally, it was hard for us. It ultimately was Jocelyn who emotionally prepared us for what was about to happen.

Jocelyn lost her courageous battle to osteosarcoma in 2014, but she will never be forgotten. We are deeply honored that Jocelyn's family is a part of our Walk each year and that they continue to support a Foundation that meant so much to Jocelyn.

The beauty of our wonderful sedation nurse angel, Debbi! Also pictured with Debbi is Jessica... a fantastic child life specialist at MedStar Georgetown University Hospital. 

Our family together at the Walk. We thank our parents for contributing $3,000 toward the successful challenge wall competition!! There will now be a second Mattie Miracle Snack Cart that will be funded. The first one is at Georgetown Hospital and the second one is going to Children's Hospital at Sinai in Baltimore.

Pictured from left to right are Don and Barbara Brown (Peter's parents), Peter, Vicki, Mauro (Vicki's dad), Ilona (our close friend and co-founder of the Chris Lantos Foundation, in memory of her only child who died from Leukemia), Virginia (Vicki's mom) and Karen (Vicki's lifetime friend). 

Our Georgetown family..... Debbi (Mattie's sedation nurse) and all of Tricia's family including our canine buddy, Melo! 

This is Wendy and Gavin, co-founders of The EVAN Foundation! They too lost their only child to cancer (Neuroblastoma). We appreciate their support of our work. 

This our friend Margy! Wearing an orange sweatshirt and showing Mattie spirit. Margy runs a non-profit cancer organization called Growing Hope. She has successfully provided support to children with cancer for over 20 years. 

We are so happy that we had so many of our cancer network present at the Walk!  

Sunday, May 22, 2016

Sunday, May 22, 2016

Tonight's picture was taken on April 8, 2002, five days after Mattie was born and I was released from the hospital. What you can't see was the car we put Mattie into to drive him home. A month before Mattie was born we bought a VW Passat. We bought the Passat because of its high safety ratings and the fact that it had a wonderful trunk to put Mattie's stroller and items into! That car has been with us ALL these years and I nick named it the "Mattie Mobile." The car survived Mattie's birth, his growing up, his entire cancer battle (which meant Mattie was in the car post surgeries in which his limbs had to be completely straight, and the seats of the car had to be folded down to accommodate him), and of course all the items we have transported for the Foundation over the years. If an inanimate object could be part of the family, this car came pretty close. 

Quote of the day: Hard is trying to rebuild yourself, piece by piece, with no instruction book, and no clue as to where all the important bits are supposed to go. ~ Nick Hornby

The Mattie Mobile is 14 years old! Yet if you looked at her, you wouldn't know it! She was in great condition and well cared for. The Ford dealer today was super happy to take this car off of our hands and while I was transferring items out of the car, two people asked me about this car and if I was selling it! I have no doubt she will make another family very happy! 

Peter has been working on me for TWO YEARS to sell this car and purchase another one. But I wouldn't hear it because I was attached to my car. It reminded me of Mattie and our times together and some days when driving the car, I would still look in the rear view mirror expecting to see Mattie sitting right behind me. 

Though Mattie has been gone from our lives for over 6 years, there were still Mattie items in the Mattie Mobile. The arm rest in the back seat kept several of Mattie's toys he used to play with, the front seat had several of Mattie's creations, and the trunk also housed many of Mattie's things. So there was a lot to clean out of the car today. In fact, I NEVER thought I would be driving the Mattie Mobile to the Ford dealership, just to leave it behind today.

I photographed this portion of the back seat, because that is where Mattie used to sit. Directly behind me, the driver. We could see each other quite well that way!

This is the new car we purchased today, a Ford Escape. The name is perfect, because on any given day Peter and I do feel like we need to escape! Mattie's favorite color, which also happens to be mine, is red. So I felt that symbolically this car had to be red and given that red is one of the three colors of the Foundation, it is perfect. Since as I drive around and accomplish Foundation work, I might as well have a color car that reflects in my mind Mattie Miracle. I haven't named this Ruby Red number yet, but in time, I am sure she will have a name. Needless to say, I have placed many of Mattie's items back in the car with me. You just need to look for them, but they are there! I know Mattie would have thought this car was NEAT, given that it practically has the technology to parallel park itself, it can talk to you, and just do about anything you would want in a car. Our "little engineer" would have found it intriguing.