Saturday, May 22, 2021

Saturday, May 22, 2021

Tonight's picture was taken in May of 2009. Mattie was home between hospital stays and as you can see our dining room and living room were transformed. We had trains and train tracks in the living room and a racing track and cars in the dining room. Mattie had a way of filling up a room and a home. It has been an adjustment to go from this, back to the days before we ever had a child. It's a huge adjustment and not one that is natural or you ever really come to peace with. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 33,101,236
• Number of people who died from the virus: 589,660

Still working on Foundation acknowledgment letters from the Virtual Walk last Sunday. Yesterday I wrote 40 letters and today I wrote 60! I am making headway. It is vital that I make progress on this because I am going to Boston for Memorial Day weekend and then we we come back we are going to South Carolina. We are taking the trip we booked for 2020, but postponed it to this year. In between these trips, we close on our Oakton house. Once I come back from South Carolina, I have to focus on getting the house ready for us to move in. Then of course move in! It will be a busy summer. 

After walking Sunny around the National Mall, Peter and I drove to Oakton, and became exploring our neighborhood and what it has to offer. To be perfectly honest buying a house during COVID is insane. For many reasons, but the one main one that has bothered me is timing. You are only allotted about 45 minutes to tour a house. Then that's it. The next buyer comes in and you have to go out! In addition to making a big decision when rushing through a house, you are also dealing with a housing shortage. So there is no thinking and debating. If you think you like the house and neighborhood, you have to put in an offer in that day! We learned our lesson after losing two other houses. But in all reality, I am thrilled we did not get the other two houses, because the one we are actually buying surpasses them by a mile. 

In addition, to getting a better house, we are buying the house from the original owners of the house. We will be the second family who has ever lived in the house. The family loved my personal letter and they happen to be philanthropic too and are happy to learn about our Mattie and Mattie Miracle. Fascinating no!? They seem like lovely people and they want to meet us and celebrate the day we close on the house. They have invited us over for champagne and they will walk through the house with us. They sound like very special people and I am beyond impressed with how they maintained their home. Clearly they loved it and I hear they are crying about leaving it. 

The gifts keep coming! I learned that the owners of the house want to give us items for free. Items like TV's, porch and patio furniture, armoires, and the list goes on! I can't tell you how helpful this will be to us! 

Friday, May 21, 2021

Friday, May 21, 2021

Tonight's picture was taken in May of 2009, on Mother's Day. My last Mother's Day with Mattie. Mattie worked with his art therapists on creating this beautiful clay vase! Then they constructed tissue paper flowers for the vase. Mattie came into his hospital room that day to surprise me with the gift. To this day, I still have the vase and flowers in our living room. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 33,079,478
• Number of people who died from the virus: 589,135

Tonight's walk photos will highlight some of the wonderful step count photos we received. In total, our participants walked over 600,000 steps for Mattie Miracle. 

One of our supporters, Gary, in New Jersey, set me this photo at 6:11am! 

I was introduced to a family living in Virginia, whose mom is a childhood cancer survivor. Her son, Jeremy, participated in our walk, and he got his friend Preston to join along! I received a lovely message from Jennifer which said:

"We did not have the privilege of knowing Mattie, but I was a cancer kid myself. I know how precious and valued Mattie would have been to all who knew him. Thank you for allowing us to be a part of honoring the legacy of love he inspires."

Messages like this mean the world to me. Because we do not solicit from families touched by childhood cancer at ALL! Therefore, when I learn that someone impacted by childhood cancer participated in the Walk and made an effort to get to know us, it is a treasured gift. 

These two sisters, Shanthi and Shriya, have participated in our Walks for years. Not only did they attend every live Walk, but they were also volunteers. I am thrilled they continue to be a part of our event!

This is Tanuja, Shanthi and Shriya's mom! 

This is Lori! I met Lori in 2011, and we have been connected ever since. Lori is one of the leading researchers and clinicians internationally on the psychosocial care of children with cancer. Lori took our vision for the Standards of Care and made them a published reality. 

Our friends the Goldwater's! These children are the grandchildren of Mattie's preschool teacher, Margaret. Margaret was a dear friend of mine who died from ALS. Margaret's daughter, Ali, continues with the Foundation where her mom left off and she has encouraged her children to also get involved. 

This is Craig. He is our top walker this year. He also won last year too! How does he do it? He's a runner. 

Maya is 13 years old and lives in Illinois. Her mom and I went to graduate school together. Maya won first place for the teenager step count. This is Maya's second year winning with us. I am so impressed with her. Just to so you know, 55,807 steps translates to 26 miles!

This is Melissa's step count. Melissa is Maya's mom! I absolutely love that a mom and daughter team walk together to support Mattie Miracle. Melissa is our second prize winner this year, and was last year too! 

Our third prize winner is Matt. Matt is no stranger to Mattie Miracle, as he is soon to be Tricia's son-in-law! Tricia was Mattie's favorite nurse. Tricia and her family have attended every Walk since we started in 2009. 

Thursday, May 20, 2021

Thursday, May 20, 2021

Tonight's picture was taken in May of 2009 at the Mattie March. To me this photo says it all. Next to Mattie is Bob Weiman, AKA "the Magic Man." Bob was the head of Mattie's lower school and devoted time practically weekly to visit Mattie in the hospital and teach him magic tricks. At the Mattie March, Mattie and Bob performed for the crowd. Specifically the "peanut butter booger trick." Or as Bob calls it "the Mattie Brown" trick! Magic brought a whole new life to Mattie. It made him feel special and accomplished. Because you do not need gross motor skills to perform magic, instead you need fine motor skills and quick wit. Both of which Mattie had! Bob was a great teacher to Mattie and truly a his kindness will never be forgotten by my family. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 33,053,454
• Number of people who died from the virus: 588,464

Donations are still coming in to the Foundation! I think this will be our final thermometer reading for the Walk:

$124,084

We have amazing supporters, who enable Mattie Miracle to make the miracles possible!

There was a lot going on today! Sunny went to the groomers. I swear I tell the groomer one thing, and I get another! Sunny was basically shaved today! Which isn't necessarily a bad thing, as he is fur is very woolly and with the heat, suffers terribly. But I think Sunny weighs 10 pounds less after this haircut. I miss Sunny's original groomer! She was the best! But she became a vet tech, and no longer grooms. I haven't found a groomer I like since her. 

In the midst of doing Foundation acknowledgments today, I got a call from our head researcher who works with Mattie Miracle. We have a team of 8 incredible psychosocial researchers and clinicians (from all over the US and Canada) who have been reviewing grant proposals for Mattie Miracle and the American Psychosocial Oncology Society (APOS). These reviewers are amazing people, as they offer their skills and time, without compensation. I am not sure who does that these days, but the professionals connected to Mattie Miracle are inspiring. 

Today I got the final scores of the studies that were reviewed for our Mattie Miracle/APOS grants. I am proud to say that Mattie Miracle will be funding two studies at the $10,000 level and two other studies at the $5,000! In addition, we recently awarded a research grant through the Association of Pediatric Hematology/Oncology Nurses. So altogether we are supporting close to $35,000 worth of innovative research this year alone, on top of the $68,000 to date. At the end of this year, I will be proud to say we have funded in total $100,000 of psychosocial research. 

I promised to start posting some Walk photos! Check out all the wonderful dog photos we received this year. I am quite convinced that dogs are indeed a part of the family. They are our fur babies, which is why we are intrigued by them and take lots of photos. People did send me photos pictured with their dogs, but tonight, I am highlighting some of our FURR FRIENDS! 

How do you like this fellow!? This is Lucky, he was sporting his orange for Mattie Miracle and was ready to get walking. 

How about Berky the puppy! He had his bandana on and was waiting eagerly for the door to open to start walking. 

This is Kona! From the MedStar Georgetown University Hospital team. What a cutie!

Another cutie from the MedStar Georgetown University Hospital team. This is Cru!

Goldie participates in all our walks! 

Naturally, I couldn't forget my Sunny!

Wednesday, May 19, 2021

Wednesday, May 19, 2021

Tonight's picture was taken in May of 2009, at the Mattie March. This event was hosted by Mattie's community and people united together from all avenues of our life.... Mattie's preschool, elementary school, Peter's work, and the George Washington University where I got my doctorate and also worked. In this photo is Ariel and Tess. They were both in the human services program at the University and were two of my top students. They came to the Mattie March and spent time with Mattie doing crafts. To this day, I am still in contact with Ariel. Ariel is now a pediatric nurse in NYC and I am proud of all she is achieving. She could have continued on her merry way and never looked back at me or Peter. But that isn't Ariel. She remains connected and also is a Foundation supporter. When I look at this photo, I see a happy Mattie! I am so happy his doctors and nurses worked with us so that Mattie was well enough to attend the event.  

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 33,021,312
• Number of people who died from the virus: 587,794

I was surfing through TV channels and came across a series called Cruise Ship Killers. I am not sure why this intrigued me, especially since I am not a big murder mystery fan. But I think what got me was the fact that I have been on almost 20 cruises myself and that the show addresses real life stories. 

Here is the description.... Cruise Ship Killers is a true crime series that tells the stories of people who never returned home after taking a holiday on a cruise ship, featuring interviews with family, friends, investigators and experts."

The majority of cruise ship deaths are caused by natural causes or accidents but with 30 million people taking a cruise each year, murders do happen. This was NEWS TO ME!!! 

The episode I watched was about the mysterious disappearance of a 40 year old woman, Merrian Carver, who was reported missing by her cabin steward early on in the Alaska cruise. This was truly troubling to watch as it seemed the cruise line was being evasive and did not take the issue seriously from the beginning but then really avoided helping the family find answers. They even donated all her clothes and belongings, so that her family never got to see them or have them for any sort of closure. A lot went wrong here, and because cruise ships are located in water, they respond to no jurisdiction. So in essence families and passengers have no rights and cruise lines are not culpable. Merrian's father did change that and created a 501c3 called International Cruise Victims. 

It is sad to me that tragedies need to occur before supports or systems are put into place to prevent such incidences. I found the article below fascinating as it accounts the run around the Carver family experienced with the cruise line, and then I attached the link of the non-profit created because of this tragedy. It is so horrific to think about how this family's future changed overnight, from simply taking a cruise. Something we typically think of as fun and an adventure. After reading this and reflecting on what passengers experienced on cruise lines during COVID, it makes me pause about this whole mode of transportation. 

https://archive.azcentral.com/specials/special14/articles/1110vanished.html

https://www.internationalcruisevictims.org/index.html

Tuesday, May 18, 2021

Tuesday, May 18, 2021 -- Mattie died 607 weeks ago today.

Tonight's picture was taken in May of 2009, at the Mattie March! It was at the end of the event, when we were all cleaning up and saying our thank yous and goodbyes! Mattie and his buddy, Zachary were sitting quietly with each other. Why this was so noteworthy was because prior to cancer, they both had a very ACTIVE and in MOTION friendship. Yet as Mattie was confined to a wheelchair, Zachary accommodated. It actually was a sight to witness their friendship over time. It did not end, but evolved. They are the perfect picture of a true friendship. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 32,995,817
• Number of people who died from the virus: 587,188

It was a day of running chores. I had to mail gifts to top walkers and to our raffle winners. Which meant getting organized, packaging items appropriately, labeling them and taking everything to the post office. I can say everything is now in the mail. I like winners to have access to their items within a week of winning them. While in the post office, I picked up Mattie Miracle mail again this week. More checks came in, therefore bringing up our total to $123,937! 

I love where our Mattie Miracle post office box is located. It has been our mailing address since 2009, when we created the Foundation. I love the people who work there and they look out for me and my box! They say they can always tell when I have been in the post office, because they can see that all my mail is missing from the box. I love this post office so much that I mail all my personal mail from it too! Honestly the post office should clone Darryl and Lily! They are very customer focused and truly care. When we eventually move, our house will be the Foundation's address and I will have to say good-bye to our PO Box. Given the geographic distance, it will not make sense to keep the box. But I get attached to quality people and it is hard to let go. 

Meanwhile, yesterday I got stung in the arm while walking on Roosevelt Island. It hurt but I went on my way. By last night my arm blew up, it is red, swollen, hot, and painful. It hasn't gotten worse today, but it hasn't gotten better either. Another thing on my list of problems for the week. 

I promise to share Walk photos soon on the blog. We received many from all over the USA and even this cute one from JAPAN!!!

Monday, May 17, 2021

Monday, May 17, 2021

Tonight's picture was taken on May 10, 2009, at the "Mattie March." Mattie's support community hosted a big event in Mattie's honor on the school's field. Hundreds of people united that day around Mattie. In this particular picture you see the school's baseball team lining up to greet Mattie, fist pump with him, and wish him well. Each team player did this, and then they all got unto a bus and went to play in a baseball game. I heard later on that day that the team won the game, and the coach attributed it to Mattie's fist pumps! Cute. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 32,991,869
• Number of people who died from the virus: 586,329

More donations came in over night! I believe this is now our final walk total:

$122,637. It was our most financially successful Walk yet. 

Today, I spent the day digging out. I have a way to go, but I organized gifts for our top walkers and packaged them up for mailing, I organized raffle items and boxed them for delivery to winners, and then started updating spreadsheets for hard copy acknowledgment letters that have to go out. I have my work cut out for me, because I have around 100 or more letters to write!

Here are our top walkers for 2021...

1) first place (adult): Craig Lytle (52,180 steps)

and first place (teen): Maya Spriggs (58,807 steps)

2) second place: Melissa Spriggs (46,683 steps)

3) Matt Milano (23,740 steps)

Our first and second place winners are repeat performers! They won last year. I absolutely admire their commitment to Mattie Miracle and the energy they devote to walking. Keep in mind that Maya is only 13 years old! As I told her mom, she's a walker! I love how Maya and Melissa do our event together. Melissa and I went to graduate school together and we have bonded over that experience. Despite our geographic distance, we have remained connected. As for Matt, he is Tricia's (Mattie's favorite nurse) soon to be son-in-law. Matt has attended all of our Walks and is committed to our cause. 

Peter and I needed a break today! So we took Sunny to Roosevelt Island. While there we bumped into one of Georgetown's child life specialists with her daughter. We had a lovely chat! 

The island is green and beautiful! Along our journey, we were greeted by a snake. A Mattie favorite, NOT a Vicki one. 

Sunny found a skink! It we did not stop him, it would have been a consumed skink.  

A big turtle! Mattie LOVED turtles and in so many ways he was one with nature. Therefore, I can't go on any walk without connecting with Mattie in some way. 

Sunday, May 16, 2021

Sunday, May 16, 2021

Tonight's picture was taken in May of 2008, at the Mattie March. The Mattie March was the inspiration for the Foundation's annual Walk. Mattie was surrounded by friends who really looked after him at the event, so that Peter and I could walk around and talk with friends and family. In Mattie's hands were a cup! Not full of liquid, but try caterpillars. Mattie loved tent moth caterpillars in the spring. He used to bring home several every year from school and we would nurture them into they metamorphized into moths. Mattie truly had a good day at the Mattie March, which was extraordinary, because by that point nothing really brought him joy. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 32,939,799
• Number of people who died from the virus: 585,960

What a day this has been! Our most successful fundraiser yet! Final thermometer for today is

$121,740 (this includes our raffle proceeds). 

• 244 registered walkers
• 20 walk teams
• 529 contributions

Here are our Raffle Winners:

1. Legos: Ali Goldwater
2. iPad: Alison McSlarrow
3. Dining: Cesar Vinas
4. Money Tree: Kellie Souza
5. Caps Tickets: Lana Sonoda
6. Movie night: Jeff Foor
7. Quilt: Debbi LaViolette
8. Wine: Debbi LaViolette

I have been working around the clock for weeks. Today was a whirlwind, or being glued to the computer for over 12 hours. Processing donations, writing to supporters, downloading photos and data! 

At the end of the day, I received SUNFLOWERS from my friend Carolyn. Hand delivered! Sunflowers mean a lot to me, as they were given to me when Mattie was battling cancer. In fact, every time we were home between treatments, our support community gave me a bunch! To me they symbolize love, compassion, and community. Which is why Carolyn's gift is so meaningful today! There is NO WAY I could get through the Walk, without my core team, of which Carolyn is front and center.