Saturday, May 30, 2020

Saturday, May 30, 2020

Tonight's picture was taken on May 5, 2002. Mattie was one month old. I remember taking him out with his cousins. We sat and had ice cream outside and while in this shopping village, his cousins bought Mattie this cute bunny. It was a bean bag bunny and I absolutely loved Mattie's facial expression as he was trying to focus on the bunny and understand what we put before his eyes. Whenever I go to this shopping village now, or think of May 5th, I remember this moment in time.


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

• number of people diagnosed with the virus: 1,769,776
• number of people who died from the virus: 103,758

Last night was a first for us. We were invited to a virtual graduation party for my friend's daughter. It involved a parade of cars and a socially distancing gathering. I bought gold fans for the car and made signs acknowledging the graduate's schools (both undergraduate and where she is going for her master's degree). While decorating the car, my friend's neighbors were watching and got a kick out of what we were doing!

We brought Sunny with us! As we were driving passed my friends house we were honking the car's horn and causing a commotion. Literally every neighbor came out. Once they understood what we were doing, they joined in the fun. 

As one could possibly imagine, graduations are not easy for us. They are a reminder of what once again we are missing. In fact, Mattie's high school graduation would be this coming week. How does one come to terms with that? I am not sure!








I woke up this morning with a text message from my mom which alerted me that my dad fell and was rushed to the hospital last night in an ambulance. It is never good being carted away, but I have to say during COVID it is even worse, as caregivers and loved ones are not allowed in the hospital. But the paramedics did the right thing and I am glad they didn't take NO for an answer. As my dad did not want to go to the hospital. Yet they were correct, he has a bad urinary tract infection and needed emergency kidney stone removal today. It is our hope that now that the kidney stone has been removed that they can stabilize him. I want to make sure that all my readers know that in older adults, urinary tract infections can present with different symptoms, symptoms that are not common in younger adults. Such symptoms include confusion, frequent falls, lack of appetite, nausea, and strange behavior. 


One of the activities we did today was walk around Washington Harbor. This was a sight for sore eyes. Restaurants (outdoor dining) have opened in 
DC, Maryland and Virginia and people and boats were out and about. A sign of life and normalcy. 

Friday, May 29, 2020

Friday, May 29, 2020

Tonight's picture was taken in May of 2002. Mattie was about one month old. We were sitting outside on our deck getting some fresh air. As you can see, even at that young age, Mattie was full of life, motion, and wanted to understand what Peter was doing! 




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

• number of people diagnosed with the virus: 1,735,971
• number of people who died from the virus: 102,323

I went to the post office today for Mattie Miracle business, and what I noticed for the first time was people out and about and dining outside on patios. Virginia is in phase one of opening and this allows restaurants to open their outdoor portions. I can't tell you what a glorious sign this was today, it was like a ray of hope. 

This is the first time Peter and I ordered entrees to go. Don't ask me why we never did this before, but after months of non-stop cooking, it was delightful to eat trout NOT prepared by me!






For the last two weeks, I have been working on this year's Walk video. It was a labor of love this year as we had messages and photos coming from all over the place. It took me a while just to get those communications organized and then to figure out how to highlight the virtual walk. It is much easier covering a live event, but a virtual one has to tell a story. I am hoping after clicking on the video below and watching it, you feel the incredible energy that we received through social media. I am not sharing this video yet on our social media platforms, but will within the next week or so. So my blog readers are getting the preview!

Walk 2020 Video.... big thanks to our supporters!

Thursday, May 28, 2020

Thursday, May 28, 2020

Tonight's picture was taken in May of 2003. I took Mattie that day to visit a long-time friend of mine. A friend I made when I started graduate school in Washington, DC. This friend even held my baby shower at her home. Mattie liked visiting with her, because she had a dog and always had some fun toys and puzzles for him. 

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

• number of people who were diagnosed with the virus: 1,719,855
• number of people who died from the virus: 101,562

The picture above reminds me of happier times. A time when I was ignorantly bliss to the fact that children can get cancer and die. By the time Mattie was born, I had already known my friend (whose house I am standing in) for 10 years. We were very close, went through graduate school together, and we emailed each other everyday. Everyday for at least 8 years. As I mentioned above, she held my baby shower at her home, and after Mattie was born, she invited me over often so we could chat and she could get to know Mattie. She had an only child of her own, and she was well versed with dealing with bright boys. 

When Mattie was diagnosed with cancer, she still reached out, visited us in the hospital, and was even doing research behind the scenes to try to offer me ideas about available treatments. However, as Mattie's cancer continued to progress and it was clear that his case was terminal, I seemed to have lost track of my friend. Honestly I was balancing so much, that at first I didn't notice her absence in my life. However, it was at Mattie's funeral that I remembered.... I did not see my friend in attendance. Nor did she write to me about Mattie's death. I found that very unusual, so about two months after Mattie died, I emailed her. I was convinced that something was wrong, because it was unlike her not to communicate with me under normal circumstances. 

Therefore, I emailed her and wanted to make sure she knew Mattie died. She did return my email, but I have to say, to this day, I am still shocked at the response. The response was that her husband and son told her to sever communications with me because my situation was making her ill. That was the extent of the message. This was not someone I casually knew, we knew each other for ten years and went through many ups and downs together. I am not pining over what happened or even dwelling on it. I am just telling the story, a story that tonight's photo triggered. What I learned from this is people you think will be there for you, won't. Friendships you think are unbreakable, are! 

Over the years, my friend gave Mattie toys that belonged to her son. I was never quite sure if they were a gift or something she wanted Mattie to borrow. Years after Mattie died, I finally was determined to clean out his room. As the room was a mess and it did not showcase Mattie's creations in a manner fitting of his memory. While cleaning out, I found my friend's toys. I literally boxed them all up and mailed them back to her. After all, they were her son's and I figured she would want them as they were part of their family's history together. This is how our friendship ended and and I have never heard from her again. 

Wednesday, May 27, 2020

Wednesday, May 27, 2020


Tonight's picture was taken in May of 2003. That day I took Mattie to the Reston Petting Zoo. A zoo which was the perfect fit for him. It was small and intimate in size and very hands on. It was never too crowded either and Mattie loved petting the sheep, goats, and horses. Not to mention feeding them too. I remember this moment in time like it was yesterday. 








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

• number of people who were diagnosed with the virus: 1,695,776
• number of people who died from the virus: 100,271

Today we were all edgy as my dad was sent to have an hour long cat scan to rule out stomach cancer. I remember these days all too well, as I know the harrowing nature of preparing for a scan, taking a scan, and then waiting for results. The waiting is a killer. But fortunately the results came back negative. Ironic, how the word negative can be a blessing when it comes to cancer and other life alternating diseases. 

Peter and I spent the day in the car. As we drove an hour away to a boarding facility for Sunny. Soon we will be going to Los Angeles to help my parents move, and given that Sunny had major surgery about 8 weeks ago, he needs a special facility to look after him. 

After the facility tour, we then took Sunny for his physical therapy appointment. Today he had aqua therapy. I wasn't sure he'd like it, but they give him plenty of treats and with that he complies. His therapist calls him the "professor." She feels he is very intelligent and is evaluating her as she provides him care. She had me laughing hysterically today, because she feels that his expressions have meaning. Specifically she thought Sunny was saying to her today (through his eyes)....... 'you could have done this better.' She has Sunny's number, and feels he is smart and analyzes everything and everyone around him. I am happy to report that Sunny maybe graduating early from physical therapy! We thought he'd need 8 weeks of it, but she feels after only four, he maybe done!

She sent us a video of Sunny treading water today. Unfortunately I can't figure out how to post the actual video to the blog. But for a boy who dislikes water, he did a great job!

Tuesday, May 26, 2020

 Tuesday, May 26, 2020 -- Mattie died 556 weeks ago today.

Tonight's picture was taken in May of 2005. Mattie was three years old and one of his favorite activities in the warmer weather months was using his sand box. I can't tell you how many items Mattie stored in that box. Toys, shovels, and vehicles. Now the sandbox sits outside our deck door. Kids in our complex use it and sure enough if you pop the lid, you will still see many of Mattie's things inside the box!


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

• number of people who were diagnosed with the virus: 1,672,714
• number of people who died from the virus: 98,636

Here is another story from this year's virtual walk, that I would like to share. I received an email from someone I do not know on the day of the event! She had never supported our Foundation before this year. But she learned about our event through her local neighborhood listserv. It turns out that her son has brain cancer, is in active treatment, and he is about five years old. 

Since the pandemic, this little boy and his family have remained home. They rescheduled even some of his treatments in fear of his susceptibility to the virus. Yet on May 17th, this little fellow, his siblings, and parents all got outside to walk together as a family. The mom wanted me to know that her son was eager to walk, seemed to have more energy than every before, and the virtual event gave the family something productive and fun to do altogether.

In fact, the mom said she experienced her own "MIRACLE" that day, when she saw her son outside, doing normal things, and watching the family bond over something other than illness and cancer. Hearing that our Walk provided her the opportunity to see this "miracle," made my day. As I remember exactly the feelings and sentiments she was expressing! The story remains with me now over a week later, and this mom and I agreed to keep in touch, with the hopes that when the pandemic is behind us, we can meet in person. 

Though our Walks are not typically geared to the cancer community (as I strongly believe in raising money from the non-cancer community to help those with cancer), I was deeply touched that this family living with childhood cancer would want to participate. I would never have guessed that our Walk could be a psychosocial intervention, but that was indeed what happened for this little guy and his family. 

Monday, May 25, 2020

Monday, May 25, 2020

Tonight's picture was taken on Memorial Day of 2009. That day, friends brought Mattie all sorts of patriotic decorations. With that, he decided to decorate his wheelchair with red, white, and blue streamers and flags. Though we couldn't see the Rolling Thunder parade of motorcycles down Constitution Avenue, Mattie decided to make his own version of rolling thunder with his wheelchair. 


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

• number of people diagnosed with the virus: 1,662,302
• number of people who died from the virus: 98,218

In April, the Mattie Miracle Cancer Foundation, held its annual Item Drive in memory of Mattie's 18th birthday. We are grateful that in the midst of the Pandemic, people still donated toiletry items! 

Today, Peter and I drove to Baltimore, to drop off half of the supply to Children's Hospital at Sinai. Tomorrow, we drop the other half at MedStar Georgetown University Hospital. Mattie Miracle has two free in-patient carts that provides snacks, candy, and toiletry items to families caring for a children with cancer and other life threatening illnesses. These carts are crucial to families, who typically can't leave their child's bedside to get their own needs met. But now, the items on these carts are more important than ever, as COVID-19, limits the freedoms of children and parents. As they must remain isolated in their rooms for their own safety. 

When we arrived at the Hospital, we were greeted outside by Adina. We fund Adina's full-time child life position and we are honored to be working with her. She is not only highly competent and professional, but she has positive energy and is a deeply caring person. As face to face conversations are rare these days, it was nice to be able to catch up with Adina in person, enjoy fresh air, and also be able to drop items often. It is our hope that these items will be of help in supporting children and their families. 

I would say that the rest of the day, I spent on post-Walk administrative tasks. In addition, I am working on putting together a video of the virtual walk. That may sound easy, but with hundreds of photos that came into us through email and social media, it has taken me a while to dig out and organize them. So this video is truly a labor of love and because there was no live event, it takes much more thoughtfulness to create a story through the video.  

On another note, a cousin of mine in Italy, sent me this photo today. It was me of course with my paternal grandmother. I have no recollection at all when or where this photo was taken. But clearly, I know that I was trying to do a ballet pose for this photo!

Sunday, May 24, 2020

Sunday, May 24, 2020

Tonight's picture was taken in May of 2004. Mattie was two years old and we took him that weekend to the National Arboretum in Washington, DC. Outside the visitor's center, is a lovely pond filled with koi. They even sell food to feed the fish, which of course Mattie was eager to do! Well maybe not do himself, but he had me do it and he watched very carefully!











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

• number of people diagnosed with the virus: 1,641,585
• number of people who died from the virus: 97,686

Given the amount of time needed to coordinate the virtual walk and manage its administration, I haven't been able to take longer walks with Peter. Today, we went for our first long walk in a while. We headed down to the National Mall. I am glad we did. As we were walking down Virginia Avenue, we saw a familiar sight..... hundreds of motorcycles and the "the Saluting Marine." Actually signs of life, which was very welcomed. 

Every Sunday before Memorial Day (for the last 22 years), our National Mall experiences Rolling Thunder. Which has now been renamed... Rolling to Remember. Thousands of motorcyclists ride into DC in a patriotic display in order to honor our veterans, and also to remember those lost or missing soldiers from our nation's conflicts. These heroes from across North America ride into town for this annual event represent their fellow soldiers, sailors, airmen, marines, coast guardsmen, firefighters, rescue personnel and law enforcement officers and make the event especially memorable for riders and spectators. This is the first year the event has been CANCELLED! 

Nonetheless, the Saluting Marine was standing in his usual position today and there were some veterans who were present and united together. 

This is Staff Sergeant Tim Chambers, better known as "The Saluting Marine." He is the uniformed veteran who stands and salutes in the middle of the motorcycle traffic during the Rolling Thunder demonstrations in Washington D.C., on the Sunday before Memorial Day. He has done so since 2001, in the aftermath of "9/11."

This marine is truly incredible! He can stand there for hours and he represents the beauty of patriotism and the spirit of what makes America a great country. 

This is the first year I have ever seen a posting about the "Saluting Marine."

In a city, country, and world transformed by a virus, I found seeing our Nation's saluting marine and the hundreds of motorcycles surrounding him a sign that we must all remain strong, keep the faith, and not lose hope.