Friday, May 24, 2019

Friday, May 24, 2019

Tonight's picture was taken in May of 2007. That Memorial Day weekend we took Mattie to Dutch Wonderland, in Pennsylvania. I snapped this photo of Mattie and Peter in a roller coaster car. This was Mattie's first experience on such a ride, and I wasn't sure he was going to like it. But he wanted to try it. Notice the smile! That day Mattie rode the roller coaster with Peter at least five times. After that he caught the roller coaster bug and couldn't get enough of them. Though Mattie and I were a lot alike, we differed very much when it came to rides involving motion. 


Quote of the day: True heroism is remarkably sober, very undramatic. It is not the urge to surpass all others at whatever cost, but the urge to serve others, at whatever cost. ~ Arthur Ashe

As promised, I will be sharing photos from our 10th anniversary Walk over the next week. This is our Cup Tally board. Each cup color represents a different team. We had 17 walk teams this year. Each lap that a person does, a cup is earned. The cup is then placed through a chain link fence. Which makes a beautifully colored visual, of the amazing number of laps walked for our cause. 

We are proud to announce that the Blessed Sacrament School's Bullfrogs team won the cup challenge. They walked 146 laps in total, which is 37 miles! 

Our cup table on the track. As walkers complete a lap, they grab a cup with their team's color. 

The fellow you see holding cups with the plaid shirt is our loyal volunteer and supporter, Dave. Dave was on campus, the morning of the Walk, at 6am with Peter. Dave helped with setting up our challenge wall for cups, our sponsor posters, and this cup table. Dave does this for us each year, and it is a ton of work. Which we appreciate! I also know when Dave is tasked with something, it will get done effectively! What you can't see behind the cups in Dave's arms, is that he was wearing our original t-shirt, from the Mattie March of 2009. The event that gave birth to the Foundation's annual awareness Walk. 

The teen holding the yellow cups is Abby. Abby went to preschool with Mattie. She is a loyal volunteer! Abby and her sister, Emily, not only volunteer at the Walk but prior to the event they visit local stores and shops and post flyers advertising the Walk. We are grateful for thier decade of service to the Foundation. 

The teen handing off a cup to the little one is Emily (Abby's sister). Emily is handing a cup to Charlotte. Who is Charlotte? Charlotte is the grand daughter of my dear friend Margaret (Mattie's preschool teacher). Charlotte was our youngest volunteer at the Walk this year, as she was working at our craft tables. 

This trio is Sergio, Lili, and Rachael. They are the children of our DJ, Sergio. Over this past decade, Sergio's children have helped at our cup wall. This year, I officially made them volunteers. I love seeing the little ones volunteering, because this is the best way to bring awareness of childhood cancer to the next generation. 

Thursday, May 23, 2019

Thursday, May 23, 2019

Tonight's picture was taken in May of 2009. It is hard to believe that four months later, Mattie died. At that point in time, we had every hope that Mattie's cancer would go into remission and we could focus that summer on physical rehabilitation. After all, we all thought Mattie would return to school in the Fall. No one, including his doctors thought his cancer would spread with a vengeance only six weeks off of chemotherapy.  

Mattie loved our cat Patches, however, because of Mattie's immuno-compromised state, we boarded Patches at our vet for almost a year. In lieu of our cat, Mattie had this cute stuffed animal, which he'd like to have sit on his lap. To this day, this cat resides in Mattie's bedroom. 


Quote of the day: Real courage is doing the right thing when nobody's looking. Doing the unpopular thing because it's what you believe, and the heck with everybody. ~ Justin Cronin

This evening my parents returned to Los Angeles. Before leaving, we went out to lunch at Mattie's favorite restaurant. He loved this place, as it was close to his preschool and there was a pond outside the front entrance. When Mattie would get bored at the dining table, outside we went to look at the koi. 

A fellow diner was kind enough to snap this photo of us!

Seems like the fundraising thermometer jumped $1,000 from last night. I think this maybe the final total.... $118,272!

Meanwhile the exciting news is that Peter was selected by the Washington Nationals as their "unsung hero."

Somehow I am on the Nats listerv and therefore I get communications from the team. When I saw the email announcement about the community contest, I immediately thought of Peter and applied last week! Because I was in over my head with Walk plans, I couldn't devote a ton of time to crafting an 100 word submission. But I wrote from the heart and it was easy! When I applied for this, I never really looked closely at the event date. But it happens to be this Saturday and we already had plans to fly to Maine to attend our nephew's college graduation. 

Last night, I received an email from the Nats, thanking me for my nomination of Peter and letting me know he won. Therefore, we needed to be present at the pre-game ceremonies this Saturday. At first, I wrote to thank the Nats, but explained we wouldn't be able to attend. However, since this is a once in a lifetime chance, I changed my mind and I encouraged Peter to rearrange our flights so he could attend. 

I asked the Nats representative how many people applied and how many will be acknowledged. She said 60 applied and four will be acknowledged on Saturday. Quite lovely I think! The Nats have been very accommodating. We will be there for the pre-game ceremony, but then running to catch a flight. All unsung heroes are given two free tickets that day to see the game. Because we will be running to the airport, they are willing to allow me to give our tickets to friends. 

I am so glad Peter will be acknowledged on Saturday, and also happy that Mattie Miracle's name will be announced to the whole stadium. Below is the submission I wrote to the Nats.............................

Peter lost his only child, Mattie, to bone cancer. Mattie was only 7 years old. In memory of Mattie, Peter created the Mattie Miracle Cancer Foundation. To date the Foundation has helped over 25,000 children with cancer. Peter works tirelessly to bring awareness to the psychological and social issues that arise from childhood cancer. This year, he helped raise over $125,000, spread awareness to over 400 people, all while taking no salary from the Foundation. Peter experienced the worst nightmare faced by any parent, and yet honors his son’s life and memory by selflessly helping others impacted by this disease.    

Wednesday, May 22, 2019

Wednesday, May 22, 2019

Tonight's picture was taken around Mother's Day of 2009. We were in the hospital and Mattie surprised me with a beautiful bouquet of flowers. Under the tissue paper flowers was a red clay vase. Something Mattie had made himself in clinic. To this day, I still have the vase and the tissue paper flowers in our living room. 












Quote of the day: No matter what people tell you, words and ideas can change the world. ~ Robin Williams

I am slowing digging out, and we have concluded that on the day of the Walk, we generated $7,986. Giving us a grand total of $117,536. However, a few more donations are still coming in and I think we will be up to $118,000 when it is all said and done. 

This afternoon, we took my parents to a wonderful lunch on the Potomac River, at Fiola Mare. It is one of my favorite restaurants in DC. After lunch, my mom and I went to Dumbarton Oaks. 

In 1920, after a long and careful search, Mildred and Robert Woods Bliss found their ideal country house and garden within Washington, DC. They purchased a fifty-three-acre property, described as an old-fashioned house standing in rather neglected grounds, at the highest point of Georgetown. Within a year, the Blisses hired landscape gardener Beatrix Farrand to design the garden.

Working in happy and close collaboration for almost thirty years, Mildred Bliss and Beatrix Farrand planned every garden detail, each terrace, bench, urn, and border. 

This orange butterfly was fluttering all around us!

To me Dumbarton Oaks is like entering a secret garden. You just don't expect all this beauty in the middle of Georgetown. 

Hues of purple filled the gardens. 

Fountains and water elements were also prevalent! 

Pathways take you from one terraced garden to the next. 

This is the pebble garden. Do you notice the chaff of wheat created by pebbles. Apparently the Bliss family motto was.... you sow what your reap and you reap what you sow!

My mom in front of the house, which is now a museum. 

The swimming pool for the property!

Me next to a wonderful gardenia bush! The gardens make you feel like you are stepping back in time. They are peaceful, beautiful, and a true escape from city life. 

Tuesday, May 21, 2019

Tuesday, May 21, 2019 -- Mattie died 504 weeks ago today.

Tonight's picture was taken in May of 2009, at the Mattie March. This event was organized by Mattie's community, to show support for him and us. What I want you to notice was the little fellow next to Mattie in the wheelchair. That was Mattie's closest kindergarten friend, Zachary. Despite how sick Mattie was and how frightening his treatments appeared, Zachary remained friends with Mattie and found new ways to play together. As prior to cancer, Mattie and Zachary did a lot of active play, involving running and climbing. However, after diagnosis, Mattie's treatment left him physically impaired. That could have altered their friendship, but what Zachary showed me was that friendship transcends disease. 

Quote of the day: You give to yourself by giving of yourself. ~ Matt Kahn



To several of my dear friends who wrote to me today.... THANK YOU! Thank you for reading my words last night on Mattie's blog. I can't say that today I am feeling much better, but with time I will rationally accept that this family friend is clueless, and move forward with our mission and my commitment to Mattie's legacy. Because unlike what this friend is implying, I think I am quite mentally healthy and I am in touch with my feelings about Mattie's death. Which just points out how insignificant his comments are, because to me denial of feelings associated with child loss, and trying to PUSH memories out of one's head are what leads to true mental health issues down the line. 

Peter had made significant headway on our first floor. All Walk items in our living and dining rooms have been organized, wrapped and are now in storage. Next week I will tackle all the items piled up in Mattie's room. I have yet to be able to dig out of walk donations and compile a total, but hopefully by next week this will happen. 

I want to begin by posting some Walk photos. This shows our attendance at the Walk. Unlike previous years, attendees this year came in and out of the event throughout the day!

Do you see the star shaped fans we created? They have the number 10 on them, to celebrate our 10th anniversary! 

Before the official start of the Walk, Peter said a few words and then I followed him. Our friend and board member, Ann, then stepped in (on her own accord) to thank us for what we do for the childhood cancer community. 

Walking laps!!! We gave attendees this year t-shirts, drawstring bags, and fans! I love seeing the orange bags!

The crowd! 

Monday, May 20, 2019

Monday, May 20, 2019

Tonight's picture was taken in May of 2009. Mattie was attending his community organized Mattie March. The entire baseball team came to the event and each and every player came up to fist pump Mattie. They even bestowed upon him a team signed ball (which you can see in Mattie's left hand). 


Quote of the day: There are some hurts that you never completely get over. And you think that time will diminish their presence and to a degree it does, but it still hurts because well, hurt hurts. ~ Bernajoy Vaal


In the midst of hosting our 10th anniversary Walk & Family Festival, we have had family in town and several family friends. It has been a three ring circus coordinating activities, dinners, and transportation for many people. Naturally I am happy people want to come in from out of town to support us, and therefore I make every effort possible so people feel appreciated and special. 

Which maybe why I wasn't prepared for what was dished out to me tonight at a group dinner. Basically I was told that I have to "move on" and "get over" what happened to Mattie and "live my life." It was suggested that I have other children and that I start to use my degree/license to truly help children with cancer. Frankly hearing this couldn't have come at a worse time, though I am not sure there is ever a good time to unload such venom on a mom who lost a child to caner. 

I can assure you, if I posted these hurtful comments to Facebook, about a thousand childhood cancer advocates would be lighting up my page in disgust! Such insensitive comments can incense bereaved parents! I would like to think the comments were not intended to be hurtful, nonetheless, I find it fascinating when people think they know better, when in reality they truly are clueless and have a total lack of insight. 

How someone could attend our Walk, see our 10th anniversary posters, and conclude that I am NOT helping children with cancer is beyond me. I was able to have the vision for psychosocial standards of care because that is my lens. It is my educational background and professional training that has allowed me to see what is severely lacking in our country's medical system and not only advocate for it, but find a way to make it a reality on a grander scale. Not helping one or two children at a time, but the potential to help every child diagnosed with cancer, every child in survivorship, or every family managing the forever loss of a child!

I am still digging out for the Walk and will be for some time, but I would have to say tonight's conversation first made me upset, but now I am just angry.  I was bombarded with ignorant, insensitive, and deeply disturbing comments, including that I am a therapist, so I should know that it isn't healthy to continue this focus on Mattie. Really? Fascinating! Instead of acknowledging this traumatic loss and admiring how I have tried to move forward with it to help others, I am instead chastised and practically called unhealthy and unhelpful to the childhood cancer community. All I can say is WOW! 

Sunday, May 19, 2019

Sunday, May 19, 2019

Tonight's photo was taken on May 11, 2009. Mattie's support community held a Mattie March in his honor. At the event, the Magic Man (Bob Weiman, the head of the lower school) and Mattie performed several magic tricks. In fact, Bob visited Mattie throughout his 14 month cancer journey and tutored him personally in magic. Magic was actually very therapeutic for Mattie, as cancer took away his gross motor skills, however, he still had his fine motor skills. Magic enabled Mattie to connect with his medical care team, because words weren't necessary. In honor of Mattie's connection with Bob, we have a magic show at every Foundation Walk. 



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

Highlights from today's Walk! First of all it was broiling out! Try in the 90s, high humidity, and NO breeze. Nonetheless, we had a good showing and I would say it was our best organized Walk yet!

Me and my friend in cancer, Ilona. We both lost our only children to cancer. We are pictured next to photos of our sons. 

This lovely lady is Tricia, Mattie's favorite HEM/ONC nurse. Tricia hasn't missed a walk yet! Tricia took care of all three of us in the hospital and we will never forget her. 

Me, pictured with Dr. Shad and Adina. Dr. Shad is the chief of pediatrics at Children's Hospital at Sinai and Adina is our child life specialist at the Hospital. We pay for her entire salary. Adina is a love and very competent, compassionate, and truly interested in Mattie Miracle and our mission.  

This is the magic man! Bob has been a part of our Walk ALL ten years. Bob performs every year at the Walk, in honor of Mattie. Mattie performed magic with Bob at the Mattie March in 2009. They had a special connection and magic was therapeutic for Mattie, as having these skills made him feel unique and special. 

Thanks to Take the Stage Performance Company we had a surprise Flash Mob at the Walk. 

This is my friend Ali and her family. Ali's mom, Margaret, and I were close friends. When Margaret died, Ali literally picked up where her mom left off. Ali fundraises for us, ran our craft tables at the Walk, and encourages her whole family to attend the Walk!

The wonderful Lego cityscape at the Walk! Mattie would have loved this!

Kids playing with THOUSANDS of Legos!

Rachael performing a Reptiles Alive show!

These ladies are from AT&T! They hosted a community tent at our Walk and they are looking forward to future partnerships. 

Me with Abby and Emily! Mattie went to preschool with these young women. Despite the heat, they both volunteered the entire day at the Walk! 

The Walk maybe over, but for us it is NOT over. My lifetime friend, Karen, is here helping us dig out! I truly mean dig out! Everything that was at the Walk is now in our living and dining rooms. It takes warehouse to a new level.

It is going to take me a while to figure out how much money we raised today, but a final count will be coming out within a few days!