Tuesday, June 2, 2015

Tuesday, June 2, 2015 -- Mattie died 299 weeks ago today.

Tonight's picture was taken in October of 2002. Mattie was six months old and I have to say this photo makes me laugh. It makes me laugh because Mattie for the most part hated his crib. Sleeping and lying in his crib were not things he enjoyed doing. In fact, I would put Mattie in his crib for short periods of time (like you see here) just to get him used to being in there. But I would say for the first three months of his life he slept on my shoulder. Than after that, he slept in his car seat which I placed inside his crib. Eventually Mattie transitioned to his crib.... but it was a process. 


Quote of the day: There is no education like adversity. ~  Benjamin Disraeli


I will share more photos from the Walk, but before I do so, I visited two hospitals today. I was at Georgetown in the morning for a meeting. While there, I bumped into Jey, Mattie's "big brother." For our faithful readers, you know that Jey was the man who worked in the radiology department and transported Mattie and to and from his scans and procedures. Jey came into our lives early on and understood Mattie's fears beautifully but he also respected Peter and I. Jey would visit Mattie each time we were in the hospital, and since we were always there, we saw Jey often. Jey shared with me his memories today of Mattie and of course the day Mattie died. Jey is the one who took Mattie's body to the hospital morgue. He wouldn't allow anyone else to transport Mattie! Jey was very protective of Mattie and shortly after Mattie's death, Jey left his position at the hospital and took a position in hospital security, working OUTSIDE the building! However, he still helps patients and their families. You should see him outside talking to people, making them smile and feeling like they MATTER! As I said to Jey today, you don't need a title or a degree to help people. It is simply in his nature, he is the ultimate patient ambassador and we are lucky enough to have found him in 2008! Jey helps me keep Mattie's memory alive and like he told me today.... HE CAN'T LEAVE GEORGETOWN, and guess what? I wouldn't want him too! He is one of the few remaining people left that is our institutional knowledge!

Then later in the afternoon, I went to Washington Hospital Center. I went in for a usual check up and came out with my head spinning because my doctor wants me to get rescanned! An issue which I thought was done and finished, she wants me to follow up on. The problem with this doctor is her insensitivity because she doesn't realize how she just sent me from zero to 100 with anxiety. Needless to say, I have already emailed my oncologist because in her mind when I saw her in the Fall, she was fine with my status. So apparently these two doctors are not on the same page. Lovely! So after dealing with her, I got back on the phone with Georgetown Hospital today to book my scan for next week. All I know is Mattie isn't the only one at this point who needs a child life specialist! 

Tonight's photos from the Foundation Walk feature other kid friendly activities! We had a table for face painting! This is always a very popular stop and our activity coordinator, Debbie, provides and sets up wonderful supplies for our volunteers! Including princess style hand held mirrors for the children to look at their finished product!

A happy painted face!

Another painted beauty! I saw some children with spiders, hearts, bugs, flowers.... but really what ever the child requested was painted on!

There were also kid tattoos provided at the face painting table!

This year we had the fifth grade St. Stephen and St. Agnes Girl Scout Troop at the Walk who hosted a "create a bird feeder" for kids. As you can see they set out bird seed and used twig balls. Frosting was used as the glue to stick the seed to the twig balls. They decided to do this project because they knew how much Mattie loved birds and wanted to do this in his memory. 

Also at the Walk was Nancy from Studio G. Nancy works with Georgetown University Hospital. Nancy volunteered her time at the walk to help kids build a "Bug Mobile." She learned from Linda (Mattie's child life specialist) that Mattie loved bugs. So Nancy created this fun activity in Mattie's memory. Mattie would have absolutely loved this creation! The bugs were adorable! 

Here is what the final product looks like.... two bug mobiles!!! The heart on top helps, but picture plastic bugs hanging from it with little chimes on the bottom!

Monday, June 1, 2015

Monday, June 1, 2015

Tonight's picture was taken in September of 2002. Mattie was five months old and doing something he absolutely hated..... sitting on his tummy! Mattie hated having to do tummy time and strengthening that portion of his body. Mattie preferred being upright on his feet. He desperately wanted to walk and actually run right from the beginning, which was why he loved "tot wheels" (his walker).


Quote of the day:  Nothing ever becomes real till it is experienced. ~ John Keats

Tonight's Foundation Walk photos feature the two moon bounces we had at our event. Since this year's Walk was designed to launch a whole new concept, the challenge wall, we decided to completely change up the moon bounces we offered at the Walk. Typically we always have a rock climbing wall at the Walk and a small moon bounce, but this year, we decided to have this enormous moon bounce called.... Circus City! The dimensions of Circus City are 28 feet in length, 47 feet wide, and 22 feet high.  

We rent all our moon bounces from Fantasy World Entertainment, and I like this company because they are family owned and operated and they are also the largest inflatable company in our area and one of the most reputable. I am very grateful to Amelia, the company's owner, who counseled me this year to bring Circus City to our event. This inflatable was a SUPER addition and very popular!!! I had parents tell me that their kids were IN LOVE with this moon bounce.

The other moon bounce at the Walk was this four person Wacky Basketball Sports Equalizer. This moon bounce was popular not only with kids but with teens and even adults. 

A person can either shoot hoops independently or you can be attached to a harness and compete against a person on the other side who is moving in the opposite direction toward the other hoop. This inflatable is large: 45' L X 45' W X 9'6!

Kids LOVED the slides of Circus City.... All day long! 

To me, Circus City was a happy and colorful sight to see at the Walk and I have no doubt that Mattie would have approved of this new addition at the Walk. 

Sunday, May 31, 2015

Sunday, May 31, 2015

Tonight's picture was taken in July of 2002. Mattie was three months old and was getting baptized. Our priest, Father Jim, who was a friend of ours from the George Washington University, was amazed by Mattie. Mattie just got water poured on his head and instead of being scared by that process, was smiling, as you can see by this photo! Jim was telling our family and friends that this was a FIRST for him. Usually when Jim baptizes babies they land up screaming as soon as the water touches their heads! 


Quote of the day: Your vision will become clear only when you can look into your own heart.  Who looks outside, dreams; who looks inside, awakes. ~ Carl Gustav Jung


Over the course of the last week, I began posting photos from the Foundation's Walk on the blog in hopes of giving our readers a feeling for the overall event. There was something for everyone at the Walk from:

1) a Challenge Walk
2) an amazing raffle
3) food from Clyde's and a bake sale
4) informational posters
5) moon bounces
6) Lego displays and interactive areas
7) face painting
8) kid games
9) kid vendors
10) opportunities to meet the Child Life staff from Georgetown University Hospital
11) a magic show
12) a zumba session and 
13) music -- thanks to Rack Impact Entertainment! 

We can not thank Sergio and Claudia Rivera enough for their outstanding services. They are the co-owners of Rack Impact Entertainment and they provided their services to the Walk pro-bono! They stand behind our cause and did a phenomenal job entertaining our walkers throughout the entire event! I am so glad to have found such a reputable DJ company and would not hesitate to recommend them to other organizations. 

Tonight's photos feature the magic show hosted at the Walk! In 2009, when Mattie attended the Walk that our care community hosted for us, Mattie and Bob Weiman, AKA "the Magic Man" (pictured here) hosted a magic show together. In honor of Mattie, the Foundation always incorporates a magic show within the Walk and Bob Weiman makes this all possible thanks to his talents! Bob taught Mattie magic both at home and in the hospital and magic became a very special talent that Mattie turned to when battling cancer. Mattie's limbs may have been impacted by cancer, yet he still could perform magic tricks and outwit his audience, which inspired him. 

Pictured here is Bob Weiman at our Walk this year dressed in Orange, one of Mattie's favorite colors, performing to kids of all ages. 

Bob brings several fifth grade students from Mattie's school to the Walk to perform several tricks! This American Flag trick was wonderful. It isn't only a magic trick that that audience gets to watch, but in a way it is part comedy show. The dialogue back and forth between Bob and his students is very humorous and witty and he truly gets those sitting in the audience captivated by what they are watching!

Two fifth graders performing a trick! The girl on the left is Kate. Kate happens to be one of the girl scouts who has been involved with Mattie Miracle this year and her troop was at the Walk this year. The troop set up an activity table to help children at the Walk create bird feeders. Since Mattie loved birds, they decided to host a craft that Mattie would have loved to participate in at the Walk. 

This trick is officially called the Peanut Butter Booger trick, but unofficially it is the "Mattie Brown trick." Bob and Mattie learned this trick together at the hospital and Mattie thought it was a riot, mainly because of the name! In honor of Mattie, this trick is always performed at the Walk! I can remember it being performed in 2009!

Just so you know what I am talking about.... here was a photograph of the Peanut Butter Booger trick from May of 2009!

When Bob performs, check out some of the faces watching the show! I find the reactions just as fascinating as the show itself!

I wasn't present to see this for myself, but I only heard about this little boy in blue from my mother-in-law. Barbara told me that this little fellow was listening very carefully to Bob describing the Peanut Butter Booger trick and how this trick used to be a favorite of Mattie's. Apparently this little boy was so inspired by this story that at one point, this boy cried out..... MATTIE!!! As if perhaps Mattie was there or could hear him! Just too adorable. Clearly this little boy captured the attention of Herman, our photographer, because I have several photos of this cutie!

Saturday, May 30, 2015

Saturday, May 30, 2015

Tonight's picture was taken in September of 2002. Mattie was five months old and just introduced to "tot wheels" or his walker. Mattie loved it because it gave him freedom and mobility! Things he craved and needed right from the beginning. I remember Mattie following me all over our home in tot wheels and he did not move slowly in it either. He would zoom around in it, and would even turn corners in it like a race car driver. I have scratches on our furniture and the floors as evidence!


Quote of the day: We must not wish for the disappearance of our troubles but for the grace to transform them. ~ Simone Weil

Tonight's Foundation Walk photos feature the wonderful food at our event. Since 2011, Becca Fischer, the Executive Chef at Clyde's at Tyson's Corner has been donating the food, cooking at our event, and freely giving of her time to the Foundation. This is her fifth year with us and she now brings her family as well as her sous chef from Clyde's to assist her. Pictured here from left to right are Greg (Becca's husband), Heather (a sous chef at Clyde's), and Becca. Who isn't pictured is Rachel (Becca and Greg's daughter). But Rachel was also on site helping at the event!

The food area is always a popular site at the Walk! What you aren't seeing however is set up! In order to have food at the Walk, we have to fill out an extensive health permit application with the City of Alexandria a month before the Walk. I complete this process and hand walk the application to the Health Department myself! This is my biggest joke with Becca, because I tell her it is the one day of the year in which I manage an executive chef!

Then on the day of the Walk, an hour before the event opens, an inspector from the City comes to inspect the site. The inspector checks EVERYTHING from where the food comes from, how it has been stored, how it is cooked, how it will be served, who is cooking it, how utensils are cleaned, how hands are cleaned and the list goes on! Behind this food area in the photo are two cleaning stations, one for hands and the other for utensils! It is thanks to Becca that we are able to manage this on-site inspection with ease because if we do not pass inspection, the EVENT IS SHUT down to the public! This is one of three inspections we undergo the morning of the Walk, the other two are for fire safety and building safety (because we offer "carnival type rides").

Next to where Becca cooks and serves the food is this food truck. Within this food truck, are our two dedicated volunteers, Patricia and Bernie. They have been in charge of the food area for seven years! They started before we had a Foundation! In fact, they served pizza in 2009, during the Mattie March, which was the Walk our care community hosted in honor of Mattie to show their support and love for him. Over time, this food area has evolved! So Patricia and Bernie no longer serve pizza, but oversee drinks, chips, and candy! Of course they also manage all the money in the food area. They are an incredible duo who also brings their children to the event, and all three children (Zachary, Maddy, and Tyson) work very hard each year at the event. Not only did Zachary, Maddy, and Tyson work at the Walk this year, but they also raised funds for their Walk teams! It doesn't get better than that.... they are the model volunteer. 

The Food Area! What you may or may not notice while at our event or in the photos are two things. We cover all our tables! Color is important to me. We put table cloths on all the tables. The table cloths are either orange, yellow, or red. These are the three Foundation colors, and colors that Mattie loved! In addition, on top of the picnic tables are always placed flowers. This is not in memory of Mattie, but in memory of my friend, Margaret. Margaret used to bring flowers to our Walk every year and decorate our tables. Like me, Margaret loved flowers. Each year I am on overload with managing the operations of Walk and usually can't get to setting up flowers, but my friend Ann knows about this tradition, and helps to keep it alive. Which I am thankful for. So when I see flowers on the table.... I think of Margaret! 

Pictured here are Marisa and Colton! Marisa runs our bake sale at the Walk. Marisa has been doing this for six years now. Marisa got to know Mattie when she was in high school, and she would assist me when I was home from the hospital between treatments with trying to entertain Mattie and keeping his spirits up. Marisa is dedicated to helping the Foundation, and though she lives in Pennsylvania, raises funds for the bake sale, and runs it each year at the Walk. 

At one time our bake sale used to involve home made products, but thanks to the City of Alexandria and their regulations, home baked goods are NO LONGER allowed to be sold at a public event. Therefore we are only allowed to sell store bought items. I get the liability associated with this, and the safety concerns, but it does take away from the tastiness of buying something that came right out of someone's oven!

Friday, May 29, 2015

Friday, May 29, 2015

Tonight's picture was taken in September of 2002. Mattie was five months old and eating up a storm. He was getting the hang of the notion of using a spoon, but Mattie had a mind of his own. He did not like his high chair and preferred eating in his car seat. That car seat served many purposes! It wasn't only used in the car! Of course there came a point that Mattie no longer fit in the seat and therefore had to transition to a high chair. That too was an adjustment which took time and coaxing.... first sitting in the chair for short periods of time with toys, without being latched in or having the tray table in front of him, to eventually learning to get used to sitting with the table latched into the seat so he could eat. 


Quote of the day: Time decides who you meet in life, your heart decides who you want in your life, and your behavior decides who stays in your life. ~ Ziad Abdelnour

Tonight's Foundation Walk photos feature the Zumba session at the Walk. This is the fourth year we have had Zumba, and the session is conducted by Jenny Cavanaugh. Jenny is my zumba instructor and I met Jenny when Mattie was in kindergarten. Mattie and Jenny's daughter were in the same kindergarten classroom. However, it wasn't until years after Mattie died that I started to take zumba classes with Jenny. 

Jenny kindly offers her skills and talents for free at the Walk and gets many of us moving and jumping around. It turns out, I hear, that people in attendance like watching those of us who participate. There is something about zumba that provides community fun and spirit to the event! 

This year it was like exercising in a sauna. The humidity and the temperature on the AstroTurf were a killer. Yet you can see some of us bravely did it anyway! 

From left to right are Nicole (Tricia's daughter), Tricia (Mattie's favorite HEM/ONC nurse), Ilona (Co-Founder of the Chris Lantos Foundation), my mom, and Heidi (a Mattie Miracle Supporter).

The trio -- my mom, Ilona, and Heidi

I do not know who this it, but I call him our "zumba fellow!" He was the brave guy who got out there and danced with us and did a great job!!! 

I love this photo..... the smile and the happiness of moving to music! This is one of our volunteer's doing zumba! 

Thursday, May 28, 2015

Thursday, May 28, 2015

Tonight's picture was taken in August of 2002. Mattie was four months old and by this point fully engaged with eating more solid foods, like baby cereal. In fact, Mattie loved rice cereal and baby oatmeal. So much so that as Mattie got older, oatmeal became his food of choice to start his morning. Every morning, like clock work he had oatmeal. He loved it that much! 

Quote of the day: We are what we repeatedly do. ~  Aristotle

Tonight's blog posting features some of the posters we had on display at the Walk. We had over 64 posters on site for people to view and read. Under our Registration tent we always feature a photo of Mattie. He is the reason why we created the Foundation and his memory is the driving force behind our psychosocial mission. As you can see, this little fellow seemed to like our posters and the hurdles they were positioned on. He fits right in. 

Also in the Registration Tent, was our Schedule of Events poster. 

Along the track, we place 51 posters. Twenty five of the posters were featured in this concentrated area. The posters had: 1) content on them about the Foundation, 2) they had childhood cancer facts, and 3) they also had photos of all the work we have accomplished to date addressing our core areas of Advocacy, Awareness, and Psychosocial Support. 

Here is a close up of some of these posters!

Throughout the event, our attendees wandered into this informational gallery to check out our posters. To me these posters are very important because they depict what we actual do, accomplish, and where our funds actually go!

As you can see the title of this poster was, "What does Mattie Miracle do?" We had many descriptive posters about Mattie Miracle on display, in addition to factual posters about childhood cancer and the psychosocial impact of the disease.

This was our creative poster to match teams to colored cups. Each team was assigned a color cup, and each team member earned a cup for each lap walked around the track. In essence the number of cups placed in our challenge wall helped us track the number of laps each team walked!

Our teams also brought their own posters! These were beauties! Team KW and Friends (which was comprised of members of the St. Stephen's and St. Agnes School community) and was captained by Debbie Keefe (Mattie Miracle's kid activity coordinator six years in a row!). These posters helped to pull Debbie's team together for a group photo, but they were also wonderful visuals for our banner photo.

Can you see Debbie's posters in the middle of this photo?!

Around the track we also had our 26 Faces of Hope posters! We created this project in 2012, and our participants find these posters very meaningful! On each poster is a photo and small description of a child or teen who is either in treatment or is a survivor. They are why we are walking and serve as reminders to those at the Walk that they are there to have fun, but their fun is for a purpose and good cause.... to raise money to help meet the psychosocial needs of children and teens, like the ones around the track. 

People really do look at the Faces of Hope posters and some even stop to take photos beside them. 

Wednesday, May 27, 2015

Wednesday, May 27, 2015

Tonight's photo was taken in July of 2002. Mattie was three months old. I happen to love this photo because of Mattie's facial expression! It was almost as if he was saying...... "hum that's very interesting!" Mattie definitely looked more like Peter when he was a baby, yet as Mattie grew into his toddler years and beyond, there was no doubt who he looked like!


Quote of the day: Everyone sees what you appear to be, few experience what you really are. ~ Niccolo Machiavelli

Tonight's pictures feature the LEGO activities that were present at our Walk on May 17th. We always have LEGOs at the Walk because Mattie was a huge LEGO fan. When he was battling cancer and was unable to walk and move around, LEGOs became our form of therapy. We did LEGOs in the hospital and at home, and literally in 2008 and 2009 we built every LEGO kit on the market. We want to thank the WAMALUG and WamaLTC groups who come to our Walk every year and set up this wonderfully elaborate city scape and train display. It is a labor of love and the beauty of this is the trains are operational and run around the track. In fact, many of the LEGO structures you see here are models of actual historic buildings in Alexandria, VA where the Walk was held. Very clever! 

The other LEGO group that joins us is Play-Well TEKnologies. This is the second year Play-Well has been at our Walk. Play-Well sends two educators to our event and does very hands on activities with kids of all ages. But the activities are very directed to engage the engineering mind of a child. 

At the Play-Well tent this year, one of the structures they built were towers! As you can see one of the towers was quite high.

The kids get very engaged in building, so much so that the LEGO bricks come off the tables and onto the ground!

Marta, was one of the Play-Well educators who joined us this year. How do you like that suspension bridge?

Ian, the fellow with the plaid shirt, is the Virginia Area Manager of Play-Well and helped me coordinate this year's tent at our Walk. He brought many wonderful new ideas to our Walk and we were thrilled to have his participation.