Saturday, July 25, 2020

Saturday, July 25, 2020

Tonight's picture was taken on July 25, 2009, the last birthday I celebrated with Mattie. Mattie's child life specialist, Linda, bought us this cake so that Mattie could surprise me! At that point in time, we thought chemotherapy and surgeries were behind us. Our goal was to continue the experimental immunotherapy treatment and work on physical therapy and rehabilitation. With the hopes of Mattie returning to school in the Fall. Of course about 11 days after this photo was taken, we learned that Mattie's cancer had metastasized throughout his body and whatever hopes we had, vanished. 



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

• number of people diagnosed with the virus: 4,164,226
• number of people who died from the virus: 146,299

I am very grateful to have received all these wonderful cards and messages. In the background of this photo are two paintings Mattie created when he was in the outpatient clinic of the hospital. 

In the midst of living through lock downs and a completely altered way of living, we went out today for lunch to celebrate my birthday. The restaurant is walking distance to our home and literally no one was around us. The restaurant took great cleaning precautions and what you can't see was the view. This restaurant is right on the Potomac River, and given the intensity of the heat, I was happy to sit inside!

Dining at Fiola Mare is a special treat! I love going there to celebrate birthdays or anniversaries. It is a memorable restaurant because of the food, service, and atmosphere. 

Peter started with burrata. But it wasn't any cheese! They crushed basil in a pestle and used dry ice in the process. Can you see the vapor? I had a wonderful gazpacho with edible flowers.   

Peter had wild Rhode Island Calamari and I had Branzino. Both were served with Salsa Verde and Sea Salt. Both were delicious.

We each ordered a dessert and the restaurant also gave me a complimentary dessert. So literally I worked my way through three! No problem for me.

MASCARPONE & TAHITIAN VANILLA CUSTARD

Black Figs Compote, Figs and Sour Cherries Granita, Port Wine Reduction

CAMPFIRE SUNDAE

Toasted Marshmallow Gelato, Caribe Chocolate Sauce , Caramel PopCorn , Honey Cracker and Smoked Sea Salt

 A photo of the complimentary dessert which was a basil infused cake (also delicious and light) and the card which came with it!

There is something special about a pot of tea and a lovely tea cup. Especially when what's being served was jasmine tea!

Friday, July 24, 2020

Friday, July 24, 2020

Tonight's picture was taken on July 24, 2008. Twelve years ago today! At that point in time, we had just found out that Mattie had bone cancer. We learned it the day before on July 23. On July 24, we took Mattie to the outpatient clinic at Georgetown University Hospital and met the oncologist assigned to work with Mattie. While in clinic, we met the dynamic duo of Jenny and Jessie, his art therapists. They were amazing women and clinicians and they made the unbearable much more manageable. They could see that Mattie loved art and was creative. That day in clinic, they got Mattie building and designing. He created this boat and decided to take it home to see if it would float! Alas it did!


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

• number of people diagnosed with the virus: 4,091,062
• number of people who died from the virus: 145,063

I got together with three friends today to celebrate my birthday. My friend Jane created this lovely card for me. It is very special to receive such a personalized gift, and to know someone took the time to think about me, reflect on our time together, and to generate this list of 51 things! It is a special gift. 

I met Jane at Mattie's preschool. Our children were in the same class. That was back in 2005! Now fifteen years later, we are still friends, and Jane is a significant part of our Mattie Miracle fundraising team. Mattie connected me to many wonderful people. 

I was given these flowers yesterday from my friend, Mary. Again, a mom I met through Mattie's preschool! Seeing a trend? It was a special preschool, that attracted wonderful families! In fact, the majority of my meaningful friendships in the DC area, came from this school!

My friends Jane and Peggy surprised me with this hand crafted bird house! An artist in Virginia designed it and it has a lovely copper roof, and a butterfly over the door, and a sun lining the door of the house. Seems quite symbolic to me! 

Though my birthday is tomorrow, it is always a bittersweet day for me. As I have trouble separating out the day from the time period in which Mattie was diagnosed with cancer. It is so wonderful to have friends who wish to celebrate my day and who continue to be on this childhood cancer journey with me. 

Thursday, July 23, 2020

Thursday, July 23, 2020

A day NEVER to be forgotten, July 23, 2008! A day that changed our lives FOREVER! Twelve years ago today, Mattie was diagnosed with Osteosarcoma (bone cancer). July 2008, Mattie was enrolled in a tennis camp. A week into the camp, Mattie complained of arm pain. We figured he sprained something or had a sore muscle from holding the tennis racket.

While enrolled in camp, I attended a conference in San Diego. Each night while I was away I checked in with Peter and I continued to hear that the arm pain wasn't getting better. Before leaving San Diego, I made a doctor's appointment to take Mattie in the day after I landed back home.

Fortunately Mattie's pediatrician took our complaints seriously, as I told her the issue had been going on for two weeks, with no improvement. From the doctor's office, we walked over to Virginia Hospital Center for x-rays. I admit that I got very frustrated with the radiology tech, because what I deemed should be an easy x-ray process turned into an hour fiasco.

After the x-rays were taken, the tech told me to go to a waiting room. I will NEVER forget this room. Mattie and I walked into a room filled with adults. NO hospital representative was in the room, only patients and ONE phone. We sat down and within five minutes the phone rang. NO ONE went to answer the phone, it just kept on ringing. So I decided to pick it up. On the other end was the radiologist, who asked for Mattie Brown's mom. When I told him I was Mattie's mom, he then said I needed to go right back to the pediatrician's office.

I said, ABSOLUTELY NOT! I wasn't leaving that room until he told me what he saw on those x-rays. He did not want to tell me, but I forced it out of him. So I heard that Mattie had osteosarcoma over the phone, surrounded by a group of strangers and Mattie staring at me. I tried not to sound alarmed but it's a bit hard after hearing...... your child has cancer.

July 23, 2008, was my first experience with medical trauma, and unfortunately that was just one of many traumas we experienced as a family. You maybe asking what's with these photos and the Christmas lights in July? Mattie requested that we take all our Christmas lights out on diagnosis day. He did not understand cancer, but he knew enough to know that something was very wrong and that the bright lights of Christmas may help lift all our spirits. The beauty of Mattie Brown..... you are dearly missed.


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

• number of people diagnosed with the virus: 4,021,053
• number of people who died from the virus: 143,967

It is hard to imagine that today marks the 12th anniversary of Mattie's cancer diagnosis. It is a day none of us will forget ever. Who would ever expect a healthy six year old to take an x-ray for arm pain and then be diagnosed with cancer minutes later? I can recall that day in the hospital as clear as a bell. 

There was too much to balance in 2008 when I learned the news that Mattie had cancer. But 12 years later, I wonder whether patients are still directed into that holding room at Virginia Hospital Center? I never gave the hospital feedback about this horrid experience! But I do hope that patients now learn about their diagnoses differently! Frankly to this day I have no idea if the room we were in was a holding room for patients to receive bad news, or what! But why have any room within a hospital unmanned and with a phone in it?! I have more questions than answers and I also don't understand why I was the only one in the room who answered the phone when it was ringing? As there were at least ten to 15 other people in the room with me! Why couldn't the call have been for one of them? 

Do I think people can get OVER medical trauma? Do we learn to integrate that trauma into our NEW NORMAL? Well if you are a long time reader of this blog, then you know I hate all these words.... OVER and NEW NORMAL. When your child is diagnosed with cancer and then dies, getting over that isn't likely to happen. Nor is accepting all of this as your new normal way of life. Similar to how people describe life now with COVID-19! As this is our "New Normal." Also hysterical to me, because I don't think the majority of the USA or the world for that matter as wants to self isolate, lock down in place indefinitely, be prevented from going to work, school, and socializing, and let's not get started with wearing a mask! None to this is natural or normal! The new normal with COVID looks as grim to me as the new normal did when Mattie was diagnosed with cancer. In both cases, I did not elect for life to look this way and to me a new normal, implies some control in dictating the change. 

So to answer my own question.... No I do not think one ever gets over a medical trauma, but I do think one learns how to live in the world with it and find a way forward. You don't forget it, it is a part of you, that you carry with you each day. It influences your choices, your opinions, your outlook on life, and most definitely how you live your life and view the future. 

Wednesday, July 22, 2020

Wednesday, July 22, 2020

Tonight's picture was taken in July of 2004. Mattie was two years old. This was his second trip to the Outer Banks of North Carolina. Big progress, because in 2003, Mattie did not want to be anywhere near the beach/water. The ocean scared Mattie. But by the following year, he was intrigued! Of course the trusty sippy cup of milk was always in tow. 

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

• number of people diagnosed with the virus: 3,940,592
• number of people who died from the virus: 142,677

Last night, we had a big lightning and thunder storm in Washington, DC. Sunny is deathly afraid of thunder. You can see he gets very agitated! But last night was a new one. Sunny never decided to fit his big body under this small side table before. Recently I cleaned the space under this table. Before there was a big Lego Taj Mahal that Mattie built. It stood under this table for ten years! Now that the space is free, Sunny uses it. 

Apparently Sunny found being under this small table comforting. I told Peter it reminded me of when I was a teenager in California. We had earthquake drills (not unlike a fire drill) in school. During a drill we would each climb under our desk and remain there quietly. 

Sunny followed me upstairs last night. Normally he loves to sleep on his dog bed downstairs at night. Last night, he wanted to be where he could see me!

See what I mean. He was by my side of the bed!

It was close to 100 degrees today. Sunny needed a walk, so we took him back to Turkey Run Park. Beautiful and green. 

The boys out for a walk. Prior to the walk, I cut Peter's hair! My resume is growing!

The trail took us besides the Potomac River. 

A typical DC day, hot during the day and by late afternoon, there are terrible storms. This one was scary! The wind was howling and the rain was everywhere. 

Besides Peter's haircut, I got the paperwork process done for my dad's catastrophic major medical plan, talked with the doctor's office, and made calls to the insurers and the caregiving agency. The administration work of my dad's illness could be a full-time job in and of itself. 

Tuesday, July 21, 2020

Tuesday, July 21, 2020 -- Mattie died 564 weeks ago today. 

Tonight's picture was taken in July of 2005. Mattie was three years old and this was his third trip to the Outer Banks of North Carolina. By this point, Mattie loved being by the ocean and playing in the sand. I snapped this photo as it was close to July 4th and I loved Mattie's pop of color and the American flag in the background. 

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

• number of people diagnosed with the virus: 3,858,686
• number of people who died from the virus: 141,426

We walked Sunny early on Roosevelt Island today. It felt like it was 1,000 degrees outside, and our boy had to take frequent breaks for water and rest. Sunny is dealing with a stamina issue not just from recovering from his knee surgery in April but trying to walk in intense heat. The spirit is willing but the body isn't. While on the Island, there was a group of about 10 elementary school aged children with their parents. Clearly these parents were trying to come up with activities to keep their children busy and active during this prolonged lock down. 

The kids wanted to meet Sunny. Sunny is the perfect gentle giant and no matter how many people surround him or touch him, he is always calm and friendly. The age group of the children happens to be my favorite. I am not sure if it is because elementary children remind me of Mattie or just the simple notion that children at that age are just that...... children. They tend not to have an agenda, are eager to learn, are full of energy, and enjoy taking in the world around them and sharing their thoughts about it. Today's children were adorable and each one shared with me their experiences with having a pet. One little boy told me about his fish that died, with the hopes of getting a new fish soon. The whole encounter was adorable and for just that moment in time, it seemed like a NORMAL world. A world where people interact and talk with one another, without running the other way. 

I would say that Sunny has opened up our world for us. He requires walking every day, so regardless of the weather, we are out in it. That even applies to a Pandemic. In many ways, Sunny has keep us to a routine, which is good, because when you really assess everything around us, it is quite evident that the world we were living in prior to COVID-19, is no longer. In fact, things are unsettling all around us. In DC, businesses are still boarded up, rioting is still happening, and the level of homelessness around us has gotten out of control. We are instead surrounded by people in tents. In fact, I will begin photographing this, because my words don't do it justice. A vibrant area which once housed business and government employees, as well as college students, is now a ghost town. Truly this pandemic is enough to make one edgy, stressed out, and with an inability to focus and look toward the future. Please tell me that one day we won't all be wearing masks? It just isn't normal not to have the freedoms we once enjoyed. Which is why I am thankful to Sunny, he is the one constant in our lives, a constant that also provides love and companionship! 

Monday, July 20, 2020

Monday, July 20, 2020

Tonight's picture was taken in July of 2006. Mattie was four years old and we took him to a park that weekend to walk around. Typically parents share things they like to do with their children. With me it was the other way around. Mattie loved being outside. He seemed happier, calmer, and engaged when in nature. So since it worked for him, I learned to adapt. 


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

• number of people diagnosed with the virus: 3,808,104
• number of people who died from the virus: 140,828

Check out who I found in the kitchen this morning, basking in the sunshine! That's right, Miss Indie!

Our typical outing for the day is taking Sunny for a walk. Because of the intense heat, we are driving to a park and then walking. Today we went back to Roosevelt Island. There were few walkers about, which explains why the deer were everywhere. I can't tell you how many baby deer we saw! They looked just like Bambi with the spots. 

Do you see these two deer looking at me?! Of course if Sunny was not on a leash, he would have been chasing deer all afternoon!

The boys running on the path. Sunny is in his element in the woods and he gives us a great excuse to get outside and face the world. 

Sunday, July 19, 2020

Sunday, July 19, 2020

Tonight's picture was taken in July of 2006. Mattie was four years old and that day we took him to the National Zoo. The zoo has a hands on area with farm animals, for children to enjoy. It was a hot day that day, as was evident by Mattie's red cheeks. Mattie liked visiting the horses, found it a bit intimating given their size, but he was intrigued. 


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

• number of people diagnosed with the virus: 3,744,061
• number of people who died from the virus: 140,369

Despite the intense heat, Sunny needs his big walk of the day. So we went back to Turkey Run Park. To me it is a hidden gem in Washington, DC. I have NO IDEA why people don't flock to the park, but I am good with that! Never a problem finding a parking space or green place to explore. Today we walked down to the Potomac River. 

Peter captured some lovely photos of what we were seeing!

As you can see, Sunny was right along side us, as we went up hills and dales. Clearly his leg has healed beautifully and is up for the adventures again. Sunny's spirit is back and it is wonderful to see. 

Literally we walked along hilly paths today and it was cooler under the trees and by the water. 

Sunny and me! 

Though Sunny wanted to drink out of the River, we did not let that happen. The Potomac in my opinion has issues, so we bring bottles of water with us for Sunny and his collapsible bowl. He was a happy camper! 

We were watching a show today about cats acting out during COVID-19. The show featured a cat behaviorist and Peter and I were fascinated by the cats and their owners and the incredibly difficult problems they were facing because human and pets were at home 24/7! These cats were doing everything from biting and scratching their owners to tearing through screens to get out of the house. 

I found the article below which discussed the stresses COVID placed on our pets. Which is ironic because Sunny and Indie are acting like business as usual. I suspect this is the case because I work from home even under normal circumstances. Therefore, in many ways, my routine hasn't changed, so neither has theirs. We are thankful to Sunny and Indie, as they keep us to a schedule, provide a lot of love, and regardless of rain, sun, storm, or pandemic..... Sunny needs to be walked. 


Pet Stress Has Increased During COVID-19, Bringing Behavior Problems:

https://now.tufts.edu/articles/pet-stress-has-increased-during-covid-19-bringing-behavior-problems