Saturday, May 12, 2018

Saturday, May 12, 2018

Tonight's picture was taken in May of 2009. Mattie was at the Mattie March, an event sponsored by his support community. It was an incredible event, with a record number of participants. HUNDREDS of people all united to support Mattie. As you can see Mattie was making laps around the track, being pushed by either Linda (his child life specialist) or Brandon (his buddy in cancer). Mattie had a great time. Don't think though that Mattie was holding water in that cup! Think again!!! It was Mattie..... so he had a cup full of tent moth caterpillars that he found in the bushes along the track! 

Quote of the day: Teamwork is so important that it is virtually impossible for you to reach the heights of your capabilities or make the money that you want without becoming very good at it. ~ Brian Tracy

We started off our day in the car! The car was filled to capacity with hundreds of Walk t-shirts! Sunny came along with us as we ventured to our friend Christine's house to drop off all these boxes. Christine and her team, fold every shirt, and separate out pre-registered attendee shirts in bins. It's a well oiled machine, but it takes a great deal of coordination. 

Later in the day, Sunny took to the couch! Apparently our working pace is tiring to him!!!

We created our Cup Tally poster today. This is basically our score board that keeps track of the number of laps teams complete around the track. Literally every team is given 240 cups of a particular color. Only a few teams collectively walk 60 miles and fill our challenge walk with their team cups. 

This year we have 19 Walk Teams, and in total 164 people participating on these Teams. Here are some Team Facts to date:

• Teams in total have raised $33,220 toward our $85,000 goal!
• The Team with the largest number of registered participants is the Blessed Sacrament Bullfrogs (with 43 members!!!)
• We have two teams neck and neck as our top fundraisers: THAT Walk Team (@$9,432) and RCC & Friends (@$8,985)
• Three of our corporate sponsors also have Walk Teams: SKS Dental, TeraThink, and Wellpass
• We also have five schools participating in the Walk this year: Blessed Sacrament, Bishop Ireton, Georgetown Visitation, St. Stephen's & St. Agnes, and TC Williams

Friday, May 11, 2018

Friday, May 11, 2018

Tonight's picture was taken in May of 2009. This was the photo taken on the track with Mattie, his cousins, and all his nurses, child life, physical therapy and doctors. Every year when we line up on the track for the Mattie Miracle Walk, I can't help but think back on this moment in time. 


Quote of the day: Fundraisers should use pride, not apology, when asking for a gift for a charity that is doing good work. ~ Henry Rosso

It has been a long day. So tonight's posting is short and sweet. The Walk thermometer 
currently reads..... $75,348 or 89% of our goal! We can't thank our supporters enough for making this possible! One more week left to generate $10,000, to meet our $85,000 goal. 

Thursday, May 10, 2018

Thursday, May 10, 2018

Tonight's picture was taken in May of 2009. Mattie was participating in the Mattie March, the event his support community planned for him and us. In fact, Mattie Miracle built off the Mattie March to create our annual awareness Walk. In this photo Mattie was surrounded by friends. His closest preschool buddy, Zachary and his buddy in cancer, Brandon. Look at how close Mattie's friends stood near him. They were there to help him, be his companion, and to find a way for him to have a good time. It was a very memorable day. Also note that sitting down behind Mattie were ALL of Mattie's nurses. I have no idea how all these nurses were able to attend and leave the hospital, but every single one of them was there to support us. 


Quote of the day: The greatest use of a life is to spend it on something that will outlast it. ~ William James

So you maybe asking yourself.... what is this? What this is plain and simple is disgusting. This was the graffiti I saw on the wall outside of the Watergate Hotel today. It wasn't there yesterday, but sure enough you couldn't miss it today. Sunny and I walk on this sidewalk daily and rest assured I don't plan on seeing this every day. 

While Walking Sunny, I pulled out my cell phone and I called the Watergate Hotel. I encouraged their management to walk to the sidewalk to see the graffiti and most importantly to do something about it. I said if they don't, I will call the city! The hotel took my name and phone number and I told them I was a concerned resident of Foggy Bottom. 

I am not sure what is worse..... the graffiti itself or the fact that NO ONE noticed it other than me. I stopped to photograph it for proof and literally people walked passed this horror without even looking at it or reacting!!! How on earth is that even possible???????????????

Meanwhile, back to the Foundation's Walk. Today's grand total is $69,568 or 82% of our goal! I am recording our daily total for my records, so I have this data to guide me next year, as I panic every year before the Walk

Flyers about the Mattie Miracle Walk have gone up all over Alexandria, VA today. My friend Mary and her two girls, Abby and Emily, take on this important task every year. It's a lot of legwork, but very necessary as it increases visibility about our event. 

This is Emily!

This is Abby. Both Emily and Abby went to preschool with Mattie. I know most preschoolers do not remember their friends from that long ago. But what I appreciate is that my friends (their moms) keep Mattie's memory alive for their children and as a result the children become involved each year in the Walk. 

Our Mattie Miracle Walk flyer. 

Wednesday, May 9, 2018

Wednesday, May 9, 2018

Tonight's picture was taken in April of 2006. Mattie was four years old and was visiting the Reston Zoo. One of the things Mattie loved to do at that zoo was to feed the goats. There were so many wonderful hands on activities for Mattie at the zoo, that it kept him engaged, active, and interested. 


Quote of the day: Few actions of consequence in the world have been accomplished without passion. ~ Jerold Panas

Here is a view of today's thermometer for the Mattie Miracle Walk. We are now at $68,635. Or at 81% of our goal. We are slowly getting there! 

Every year around this time, I start getting tired. One maybe asking why? After all I have done this event for 9 years! Sure it does help that I have a system in place from year to year but that is where it ends. Because the coordination of vendors, interfacing with donors, finding volunteers, organizing a raffle, and the simple logistics of the Walk add up to a job for ten people. So far, we have received 225 individual donations toward the Walk. Each one of these donors needs a letter of acknowledgment. Add to that over 40 community members who have donated goods in kind to us, and that is more processing of paperwork. 

I dig out daily from event registrations and donations. So much so, that I can't get to the actual set up logistics for the Walk. I am hoping tomorrow is another day and with that I can focus and address this important task! Of course with that said, if I wasn't kept busy with all of this administrative work, it would mean that we had no donations and event participation coming in. Which we need in order to meet our financial goal! 

Tuesday, May 8, 2018

Tuesday, May 8, 2018 -- Mattie died 451 weeks ago today. 

Tonight's picture was taken in April of 2007, at Mattie's fifth birthday party! A party I will never forget. We held the party at the National Zoo. Sounds good in theory, but the zoo is a rain or shine event. The day of the party wasn't just raining, it was torrential rain. I really thought the party was going to be a disaster. It turned out to be a great success. No other visitors were at the zoo, so it was like we had a private showing of the zoo. The animals were all out and enjoying the rain, and the kids thought it was a total adventure with umbrellas and boots. The zoo gave all the kids safari hats. In fact, Mattie's hat is still in his bedroom today. Mattie was fully on and having fun at his party!


Quote of the day: A rock pile ceases to be a rock pile the moment a single man contemplates it, bearing within him the image of a cathedral. ~ Antoine de Saint-Exupéry

I have one station of operation now and that is........ ALL WALK, ALL THE TIME. 

Check out today's grand total: $66,905. I want to thank the Downtown Jaycees Foundation for believing in our cause. They have supported Mattie Miracle for many years, and made a significant contribution today. The Jaycees' goal is to provide leadership training through community service projects for people who are 18 to 35 years of age. In the midst of their own great work, they also do outreach to help other organizations that support children in the District of Columbia. 

As we are getting closer to the date of our event, I always get worried as to whether we will meet our goal. So today's donation really instilled hope in me. I live and breath the Walk which is quite intense. Yet when the Walk is over, there is relief, but it is also a real adjustment for me to integrate back into every day life. 

Monday, May 7, 2018

Monday, May 7, 2018

Tonight's picture was taken in April of 2007. That weekend we took Mattie to Calvert Cliffs Park in Maryland. Going to this Park is an experience. Because it is over a mile walk through the woods in order to get to the Chesapeake Bay. The walk is very scenic and it is worth the effort in order to get to a cute little beach on the Bay. A beach which is filled with sharks teeth, as long as you are patient to dig through lots of sand to find them. Mattie and Peter were always very successful and I still have Mattie Ziploc bag full of found teeth!




Quote of the day: Donors don’t give to institutions. They invest in ideas and people in whom they believe. ~ G.T. Smith


I think G.T. Smith was right on the money. I know I personally don't give money to institutions, I instead give money to the people within institutions that I believe can make a difference to whatever the cause is at hand. I try to remember this meaningful quote as well, especially during our Foundation's fundraising season. But what I have come to the conclusion is that fundraising is personal. Meaning if you are invited to an event by a friend or family member, you are more likely to get a contribution. Which makes sense, because in today's day and day there are so many non-profits, and many unfortunately do not follow through with their promises. So accountability is crucial, and something both Peter and I firmly believe in for Mattie Miracle. 

At this time of year, I feel like it's to beat the clock! I pull 12 hour or longer days to get this Walk coordinated, and on top of that, there is a fundraising component. When May 1st hits, we work daily on promoting the Walk through social media (facebook, twitter, instagram), through newsletters, and emails. It is a constant bombardment and the pace is exhausting. 

Here is today's thermometer. We have raised $64,197 toward our $85,000 goal! We are 76% of the way there. 

Here are our top fundraising teams:

That Walk Team
RCC and Friends
Mattie Moon
Blessed Sacrament Bullfrogs
Team Tilch

Here are our top individual fundraisers:

Peggy Elkind
Ann Henshaw
David Elkind
Virginia & Mauro Sardi
Jane Pisano

Sunday, May 6, 2018

Sunday, May 6, 2018

Tonight's picture was taken in May of 2009. Pictured with Mattie is Tricia, Mattie's favorite HEM/ONC nurse. That day, Mattie attended the Mattie March, an event his support community held for him in his honor. To March was designed to help raise funds for Mattie's care and to also show him that friends and family were united behind his recovery. 

Given that today is National Nurse's Day, this seemed like the appropriate photo to post. I should also mention that Tricia and her entire family attend our Walk every year. So she continues to play a vital role in our lives. We met Tricia the first week Mattie had chemotherapy. I experienced the beauty of Tricia right away, as she understood the impact of this diagnosis on all three of us and had no problem on several occasions advocating for our psychosocial needs with the care team. 


Quote of the day: Nurses dispense comfort, compassion, and caring without even a prescription. ~ Val Saintsbury

It's National Nurses Day! Peter and I would have been LOST without Mattie's amazing nurses. Nurses are the true deliverers of care, and I don't mean only medical care. They are the first responders to psychosocial issues and provide emotional support to not only the child but the entire family.

If you or a family member have been ill in any way, then you know the CRUCIAL role a nurse can play in your treatment. It is my hope that Mattie's nurses always know that they are FOREVER LOVED and appreciated.

Here is another photo of Mattie and Tricia together. Mattie loved to play on the floor of his hospital room. That did not stop Tricia from doing her job..... she got right down there with him!

There are many Mattie and Tricia stories, but our favorite, maybe when Mattie screamed across the PICU for Tricia. Tricia came running over thinking Mattie wasn't feeling well, only to find out that he wanted to tell her something and that something was ... I love you!

In this photo, Mattie was on a hospital gurney being transported to a procedure. Behind Mattie, is Linda (Mattie's child life specialist) and alongside Mattie (in pink) is Debbi (Mattie's sedation nurse). 

I am not sure Mattie and Debbi had the best of relationships. Mainly because for Mattie, Debbi symbolized a pending procedure (in other words fear). But to Peter and I, Debbi was a God sent, because she understood Mattie's fears and anxiety and was there to safely sedate him for most, if not all, procedures and scans.

Next to Mattie is Ellen. Ellen ONLY works the night shift. She was our favorite night nurse. Extremely competent, effective, and compassionate. Ellen went through some difficult times with us, as it related to Mattie's first oncologist. An oncologist who decided to give Mattie a placebo instead of pain medication, to illustrate to me that Mattie was just seeking attention. I can't tell you how unethical that was and how uncomfortable Ellen was to follow this order. Needless to say, the placebo DID NOT work and pain meds were necessary. 

This is Miki. Miki is a delight, very competent and gentle. In fact, early on in treatment, Mattie wanted to go outside while hooked up to an IV. Going outside put Mattie him three floors down from the pediatric units. Despite that inconvenience, Miki understood the importance of feeling more normal and going outside. So she set an alarm on her watch and came down to check on Mattie in intervals.  

Next to Mattie is Sarah Marshall. Sarah Marshall is a childhood cancer survivor! She told us this early on in Mattie's treatment, to let us know two things..... miracles happen and that she understood personally what we were going through. Sarah Marshall, I nicknamed, our Angel of Mercy. She heroically helped us the night Mattie was dying. Our room looked like a battle field lined with syringes of pain meds. She couldn't administer them fast enough, that was how horrific this five hour death scene was.

Next to Mattie is Kathleen. Kathleen referred to Mattie's left leg as "Curious George." Because like the story book character, Mattie's left leg (the only appendage that was cancer free and therefore wasn't operated on) had a mind of its own and could get into trouble. While nurses would examine him, he'd take that left leg and use it like a hand.... checking out things in their pockets. The funny part was one day, Kathleen put gak (kind of like putty or clay) in her pocket, to test Mattie to see if he would find it. Sure enough he FOUND IT.... he got a foot full of gak and loved it. 

This is Katie. Katie typically wore a grey sweater with a belt when she was cold. Which was often, since hospitals are kept cold. Mattie absolutely loved to take his left leg and pull the sweater belt out of the loops. In fact, on several occasions he was very effective and completely removed the belt without Katie knowing it. Katie also wore lovely red nursing clogs. So I would call her Dorothy, like in the Wizard of Oz. 

This is Erin. Erin left the unit early on in Mattie's treatment. But she is a peach. She was the one who taught me how to initially do a dressing change of Mattie's central line (where he received chemo) and I will never forget the nights where Mattie was besides himself. We got him to refocus and calm down by drawing things for Erin. He drew her a tree, which she had on her refrigerator for a while. I also recall Erin seeing me one time in the hallway distraught. She literally sat with me and rubbed my shoulders. NOT in her job description, but that is the beauty of nurses. All of Mattie's nurses went above and beyond. 

This is Laura. Laura entered our lives when Mattie was several months into treatment. Despite not starting with us from the beginning she was equally lovely and very effective. In fact, Laura helped me on numerous occasions when Mattie had a bad and severe reaction to his experimental immunotherapy treatments. 

Saturday, May 5, 2018

Saturday, May 5, 2018

Tonight's picture was taken in April of 2006. Mattie was four years old. That day I took him to the Reston Zoo. At the time, that was a small zoo, that was really geared to the preschooler. Lots of hands on activities, but in a more intimate setting than our larger National Zoo. Didn't Mattie make a cute sheep?


Quote of the day: You must have chaos within you to give birth to a dancing star. ~ Friedrich Nietzsche

I absolutely love tonight's quote, because I am hoping through all the chaos we are living through now, that the Walk on May 20th, is a shining star. Practically every room in our home has something Walk related in it. It is challenging to plan the Walk, but also a logistical nightmare, as Walk materials come out of storage and fill up our home. You maybe asking yourself what kind of stuff?

Try over 5,000 colorful cups to start with, as we use cups to denote each lap an individual completes. Then we have hundreds of Mattie Miracle professionally printed posters. Posters that highlight our work, childhood cancer facts, and children and families impacted by cancer. This year, we also bought 6 pop up tents because I am tired of not having access to the tents we need for our activities and vendors. So all of this is going on in our living and dining rooms.

Whereas, I am happy to report that Mattie's room was cleared out today as we delivered ten wrapped raffle baskets, their ticket holders, and placards to our raffle chair. My second floor headache has now become Carolyn's. It isn't only our home impacted by the Walk, it is Carolyn's and my friends, Christine and Debbie. Christine is our registration chair, and soon her home will be filled with over 400 t-shirts and Walk programs. Debbie is our children's craft coordinator and her home is being transformed by bug and flower crafts at the moment. I know why we take on this Walk challenge, but you have to really admire our friends who volunteer to be a part of this chaos. 

A visual of our first floor. Boxes all over the place of colorful cups. Each cup color represents a different Walk team. Peter helped me tremendously today reassemble all of these boxes and then placed the appropriate colored cup in each box. Since storing all these boxes would be unwieldy in storage, we break down the boxes and store them and the cups in bins. So the process to assembling and disassembling is tedious. 

Meanwhile under our staircase are Foundation posters. Of which we have to go through them and figure out which ones will go on display this year. 

Also keep in mind that I met with the printer on Friday and have 40 new posters to display this year. Just trying to paint a picture of the level of effort it takes to put the Walk together. 

Friday, May 4, 2018

Friday, May 4, 2018

Tonight's picture was taken in April of 2007. Mattie was five years old and in preschool. One of the things he did in class was a tracing of his body image. You know.... you get down on the floor and someone traces an outline of your body. Taped to Mattie's bedroom door was the tracing. Mattie colored it in and wanted it on his door to signify that it was his room. Mattie always loved his door decorated with things... ribbons, stickers, art projects, and the drawing in blue on the door says... Mattie (and a magnet symbol). At Mattie's school they always assigned a symbol to every child. The symbol started with the same letter as the child's name. So Mattie's second year of preschool, he was Mattie Magnet. Nonetheless, everyone always called him Mattie Moon, which was the symbol given to Mattie during his first year of preschool. 


Quote of the day: Let me tell you the secret that has led to my goal. My strength lies solely in my tenacity. ~ Louis Pasteur

It is 10:45pm and I am still working on the Walk! As of yesterday we raised, $58,729. Today, our fundraising thermometer reads... $61,178. We are 72% of the way toward our $85,000 goal. I wish I could say that raising money is easy or that it gets easier with every year. Certainly the more you do it, the more you know how to fundraise, but regardless of how many Walks we host, I will always be worried as to whether we will make our goal! It is actually stressful, and probably one of the hardest job I have ever done. It is difficult and stressful because of what the Foundation symbolizes. It is Mattie's memory and legacy and therefore, to me the Walk isn't just any event. 

In addition, to expelling cerebral energy, there is a physical energy component. It involves running around picking up items, dealing with permits, raffle items, heavy lifting of Walk materials from storage to our home, and the list goes on. With each successive year, I ask myself..... will I have the energy to keep doing this Walk? The verdict is still out, but for now, I am signing off. 

Thursday, May 3, 2018

Thursday, May 3, 2018

Tonight's picture was taken on May 11, 2009. Mattie was attending the Mattie March that his support community planned for him. The March was designed to be fun and to show Mattie that his community was proud of him and stood beside him. Sitting next to Mattie is Bob Weiman, Mattie's head of school. Also known as the magic man. Bob visited Mattie often in the hospital and taught him many magic tricks. One of them was called the Peanut Butter Booger trick, which Mattie always chuckled over. Bob continues to perform this same trick each year at our Walk, and he now lovingly calls this trick..... the Mattie Brown. Do notice, the young fellow behind Mattie. That is Brandon, Mattie closest friend in cancer. He and Brandon were diagnosed around the same time and became friends, despite the difference in age. I just love how Brandon was protecting Mattie from the sun by holding up an umbrella. That simple gesture says so much to me!


Quote of the day: If it were not for hope, the heart would break. ~ Thomas Fuller 

As we launch into the final countdown of weeks until the Walk, more stress builds up. Especially as it relates to meeting our targeted goal. Fortunately I have experience with this stress year after year, but of course there is always the question, WHAT IF WE DO NOT MEET THE GOAL? That is in the back of my mind always. But fortunately there are days like today, that instill hope. As we raised close to $3,000 today alone. So our grand total is $58,729, putting us at 69% of our goal. 

Our top 8 fundraisers so far this year are:

1. Peggy Elkind ($5,157)
2. Ann Henshaw ($2,550)
3. Jane Pisano ($2,250)
4. Virginia and Mauro Sardi ($2,165)
5. David Elkind ($1,850)
6. Ronee Weissman ($1,000)
7. Me ($804)
8. Peter Brown ($744; Mind you Peter and I do not actively solicit funds for "our" team. But we are grateful to people who wish to personally support our efforts. 

Our top five teams so far are:

1. THAT walk team
2. RCC and Friends
3. Mattie Moon
4. Blessed Sacrament Bullfrogs
5. Team Tilch

To find out more about the Walk and to support our efforts, go to:

www.mmcfwalk.com