Saturday, March 28, 2020

Saturday, March 28, 2020

Tonight's picture was taken in April of 2009. Mattie was home between treatments and I had no idea Peter snapped this photo of us. But this photo captured the mood in our home. It portrays  what we managed daily, and it was even harder to help Mattie when we were at home versus in the hospital. At home we had no support, and the days and nights were LONG and challenging. What I think this photo also illustrates was that the emotional issues were not only felt by Mattie but by me and Peter as well.


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

• number of people diagnosed with the virus: 119,748
• number of people who died from the virus: 1,991

My zumba instructor does a virtual class THREE times a week. Apparently Peter snapped a photo of me this morning. Notice Sunny was staying close!

For over a week, Sunny has been dealing with a problem with his back right leg. Fortunately he was examined by a vet last week and had xrays. So we know his issue is only muscular. Today, Sunny began limping again, so we reduced the lengths of his walks and put him on his prescribed muscle relaxer. Certainly giving a dog medication is a lot easier than giving it to a cat. Yet this particular medication Sunny detests. I have tried putting the muscle relaxant into his usual favorites. But he landed up eating everything but the pills. Thank goodness for pill pockets (a treat to hide pills in). Fortunately I had a package at home and since Sunny never gets these treats, he seems to like them, pill and all. 

Though Sunny is dealing with muscular pain, he had no problem tracking down this squirrel and barking his head off.

Between our Sunny walks and this long walk in Alexandria today, we walked close to 8 miles today. 

Typically Peter and I walk with Sunny. But today we walked with our friends Ann and Bob. We did as best we could to walk many feet apart. 

Part of our walk took us on the Bluemont Junction Trail. It is a 1.2-mile asphalt-paved rail trail in Arlington County, Virginia, that the Arlington County government constructed along a former branch of the defunct Washington and Old Dominion Railroad.

This path was a first for me!

Bluemont Junction began operation in 1912 as a part of the newly formed Washington & Old Dominion (W&OD) Railway. The station was a busy transfer point for passengers and freight from Alexandria and Georgetown to points west, ending at Bluemont, Virginia - a popular resort in the Blue Ridge Mountains. During the peak years of passenger service, from 1912 and into the 1920s, trains ran between Georgetown and Bluemont Junction every 10-20 minutes. Passenger service ended in 1951, but freight continued until 1968 when the W&OD went out of business. The W&OD Trail from Shirlington to Purcellville follows the former railroad right-of-way.

There were once mail trains, freight trains, milk trains and even passenger trains that once stopped at this station. 

Friday, March 27, 2020

Friday, March 27, 2020

Tonight's picture was taken in April of 2009. Mattie was home between treatments. As you can see his leg was recasted because Mattie had trouble straightening his leg out. Instead it was bent at the knee from lack of use post-surgery, which of course made walking impossible. So the thought was recasting his leg would help correct the issue. While at home, Peter and Mattie got creative. They took cardboard boxes and other found objects at home and built this beautiful suspension bridge. Mattie received several cancer treatments in NYC, and I believe yellow taxis and the George Washington Bridge really caught his attention that year. 


Quote of the day: Today's coronavirus counts. The USA has the highest number of diagnosed cases in the world. ~ Johns Hopkins

• number of people diagnosed with the virus: 97,226
• number of people who have died from the virus: 1,478

Have you ever see the movie Ground Hog Day? If not, it is worth seeing. It stars Bill Murray as Phil Connors, a TV weatherman who, during an assignment covering the annual Groundhog Day event, is caught in a time loop, repeatedly reliving the same day.

This movie seems to describe how most of us are living in isolation because of the coronavirus. Everyday appears to be the same as the day before. Of course, this monotony means that we aren't directly impacted with the virus, so I do have great perspective and compassion. 

Each day we take a long walk somewhere with Sunny. This seems to keep all of us sane. We drove to Great Falls today. All National Parks have waived their admission fees during the coronavirus crisis. Which is lovely, because it gives all of us a chance to get out and enjoy sunshine, space, and greenery. 

Wild flowers in their glory. 

Sunny loves the adventure! He wasn't too thrilled with my request for a photo. But like Mattie, he complies.  

The beauty of the Falls. It was in the 60s today and most certainly looked and felt like spring. Such signs of hope are truly needed when living day to day in crisis. 

For part of our walk, we were on straight paths and other times, more challenging terrain. Sunny loves both and handles rocks and hills without a problem. Though there were others around us, the park is huge and it is very easy to distance yourself from others. Nonetheless, Sunny got lots of compliments today!

Sunny after his two mile walk! We had the windows down and he was sniffing the breezes while we were driving. Sunny and Indie keep us on a consistent schedule, and help normalize our daily existence. 

Thursday, March 26, 2020

Thursday, March 26, 2020

Tonight's picture was taken in April of 2009. Mattie requested certain foods for dinner, so we went to one of the restaurants on the hospital's campus and got Mattie his starches..... pasta and pizza. We went with whatever Mattie requested because our goal was to get him to eat something. Typically he wasn't hungry on treatment. So whenever he requested a food, we would run to get it. Notice the line up of cars on Mattie's container. Mattie never traveled anywhere without a toy car!






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

1. 79,785 diagnosed with the virus
2. 1,124 people who died from the virus

Today was my first experience participating in a virtual conference session. Peter and I were scheduled to host a psychosocial symposium in Portland, Oregon in the beginning of March. Of course the conference got canceled, but the American Psychosocial Oncology Society decided to host its keynote speakers and 30 of their sessions on-line. 

Peter is used to on-line presenting! I am not. So I got my first taste of using Zoom. Rather remarkable what it can accomplish. You can hear people from all over the the country and you can share slides and present content at the same time. 


This was our 90 minute agenda. I was opening up the session. Since we each had a time limit, I wrote out what I planned on saying. I typically don't do this for live presentations. As I feed off of people in the audience. So presenting into a computer, is a much different experience for me. 

Below are my slides that I presented today...............

1. Good morning, I am Victoria Sardi-Brown and I am the president of the Mattie Miracle Cancer Foundation.
2. It is wonderful to be a Part of this distinguished panel and Mattie Miracle is proud to be able to fund three of the implementation research studies that will be presented today.
3. I have the honor of opening this session by discussing…. why we are here? I think the answer to that question could be different for each of us on this panel and even for those of you who are listening to this presentation. Certainly, we are all here because the Psychosocial standards of care are historic evidence-based standards that inspire both innovative research and the delivery of optimal care for the children with cancer and their families. 
4. Yet from my perspective…. we are here….. thanks to Mattie Brown, the cute little boy you see on this slide. Mattie was the inspiration for the development of the Standards and as his mom, every time we talk about the standards, implement them in research or in practice, you are helping us keep Mattie’s memory alive and are preserving his legacy. 

1. Peter and I are passionate about psychosocial care because we learned about its importance first hand through our greatest teacher, Mattie. 
2. Mattie was our only child and was diagnosed with osteosarcoma when he was 6 years old. He had four primary bone tumors at diagnosis and endured 10 months of chemotherapy, two limb salvaging surgeries, experimental treatment and radiation. 
3. This just lists the medical treatment. But what we quickly learned were all these treatments had profound psychological and social consequences on both Mattie and us.  
4. So much so that three months into Mattie’s treatment he was diagnosed with clinical depression, anxiety and medical traumatic stress. Issues he did not have prior to diagnosis. 

1. Two months after Mattie died, we created the Mattie Miracle Cancer Foundation. 
2. We are the only non-profit dedicated to psychosocial support, awareness, advocacy, and research. 
3. For 11 years, we have been spreading the message that childhood cancer is not just about the medicine and that psychosocial care must be a part of comprehensive cancer care. 

1. Mattie Miracle is proud that the Psychosocial Standards of Care were published in 2015 and because of our commitment to the Standards we funded indefinite open access to these Standards for professionals and the advocacy community.
2. As you can see the actual publication of the Standards is about an inch thick, or around 900 pages. It is a substantial scientific publication, yet with the companion tools Amanda will highlight, I think it will make it easier for clinicians to apply the standards to their treatment sites. 

There are 15 standards of care and the beauty of these Standards is they address everything from diagnosis, treatment, survivorship and end of life and bereavement care. In addition, they focus on the child and the entire family system.

These 9 professionals are part of the core team for the development and now implementation of the Standards of Care. I used to refer to them as Mattie Miracle’s dream team, but now I call them the rainmakers. I believe they have earned this title as each of them are amazing individuals who have advanced the practice and research of psychosocial care. 

Mattie Miracle is passionate about the implementation of the Standards. We do not want them to be shelf ware. Therefore in 2018, we developed evidence based implementation grants. In less than two years we have donated over $60,000 in research funding. 

1. This slide illustrates our wonderful grant recipients through American Psychosocial Oncology Society. They represent six different institutions and their research covers 6 out of the 15 Standards of Care. 
2. We are honored to support the innovative work of Kim, Kristin, and Alex and we are happy they can share their research with us today. 

The session went VERY well today! The researchers who we funded are outstanding individuals. They presented beautifully and their work is innovative..... one created a text message reminder system to get teens to comply with medication adherence, another designed an online evidence based support program for parents of children with cancer, and the third researcher investigated the barriers to providing supportive care for siblings of children with cancer and then developed an online tool kit to help other hospitals. 

As one research told me today, she is proud to be a "Mattie Miracle Research Ambassador!" LOVE IT! 

Wednesday, March 25, 2020

Wednesday, March 25, 2020

Tonight's picture was taken in April of 2009. Mattie was home between treatments and wanted a bowl of Cornflakes. He was admiring the shape of this flake and naturally I snapped a photo. It was these spur of the moment photos that truly captured our days together. With Mattie, even the shape of a flake could be interesting. It was the beauty of life with Mattie. 










Quote of the day: The coronavirus totals for today from Johns Hopkins:

1. people diagnosed with the virus: 62,873 (it is hard to believe that half of this number is in New York state alone)
2. people who died from the virus: 894

When I woke up this morning, I was greeted by a message from my childhood friend in New York. She wanted me to know her husband died today from the coronavirus. Not that I did not take the virus seriously before, but now I see someone directly affected. In particular she wasn't allowed into the hospital (as the hospital her husband was brought to only allowed patients, NO visitors) while her husband was hospitalized for two days. She received no information in those two days, until today when they called her to tell her he died. You can only imagine how she is feeling about all of this! Having dealt with a hospital system, I can't imagine having to separate from the patient! So much is wrong with this as patients need family advocates at all times in a hospital setting (on a good day for sure, but most certainly in times of chaos). 

I try to look for signs of hope amidst all the bad news. Today I saw Governor Cuomo cite the fact that the density control plan seems to be working in NYC. On Sunday the projected hospitalizations for the virus doubled every 2 days. Now the projection is there will be a doubling every 5 days. 

Since it was chilly and rainy today, we headed back to Roosevelt Island. As I knew no one would be there because of the weather. It was us with the birds and deer!

Sunny loves the Island. Just like Mattie did. It doesn't matter the temperature or the weather. He loves walking through the woods and is stimulated by all the squirrels and deer. 

When we walk on the Island, it is about a 90 minute break from reality. Which is very needed. 

Can you see all the deer? 

A close up of the white tail deer. Ironically they aren't as concerned about us as they are about Sunny! 

Tuesday, March 24, 2020

Tuesday, March 24, 2020 -- Mattie died 547 weeks ago today.

Tonight's picture was taken in April of 2009. Just by the activity, I can tell that it was a Friday. How do I know? Because the chemistry club came to visit every Friday and this photo shows that they came into  Mattie's room to conduct one of their fun experiments. Chris was the president of the club and he was GREAT with Mattie. Mattie LOVED when the university students came into the unit and truly looked forward to participating in the experiments. Since Mattie was isolated to his room, what you can't see were all the people in the room with us trying to keep Mattie busy, entertained, and engaged. Just an incredible support team. 

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

1. 53,660 diagnosed with the virus
2. 703 people who died from the virus

As we are all in the second week of the Coronavirus shutdown, I can't say isolation is getting any easier for us. Everything about social distancing and staying home, seems completely foreign to American citizens. It is not a way of life we are accustomed to. Which maybe why this reminds me of how Peter and I felt when Mattie was diagnosed. The intense change to one's way of life, the isolation, fear, and anxiety are all too reminiscent. 

I think I had reached a place today which seemed more stable, since I have been focused on the types of treatments available to combat this virus. Then I heard the story of Jack Allard. It is hard to believe that a perfectly healthy 25 year old, with no underlying health conditions, could be in critical condition from the virus. So much so that a coma was induced and he is being transported to a hospital in Pennsylvania that is more equipped to manage his care. It sounds like a parent's worse nightmare. From mismanaged testing for the virus to parents being separated from their child because of the contagion at hand. I can't imagine how these parents feel being isolated from their child. My thoughts go out to them, as I know they are forced to make life or death decisions for their son. 

Nothing about this makes sense to me. My two nephews went to Bates College, the same school Jack graduated from. Jack's story makes me pause because he is living proof that any one of us could contract this virus and like I know all too well already.............. life doesn't always go as scripted. So much about our health and future are out of our hands. 


Jack Allard ‘16 In Critical Condition During Battle With COVID-19:

https://thebatesstudent.com/2020/03/23/jack-allard-16-is-in-critical-condition-due-to-covid-19/

Meanwhile, the only constants in our lives are Indie and Sunny. Indie came to sit with us on the couch last night. Ironically she likes to watch TV and isn't picky about the content either. 

At some point today we went to the grocery store. Who knew going to the grocery store would be the highlight of the week. Needless to say, I am not thrilled going shopping since I can tell people around me are tense and I also never know what I am going to find on the shelves. Check out this aisle today.......... no paper products or cleaning products. 

I can safely say I have never seen anything like this in my lifetime. It makes a DC snowstorm seem like pocket change, as our area tends to have empty shelves with the threat of snow. But this takes things to a whole new level. We spoke with many of the people working in the store and they told us that as soon as they stock the shelves they get wiped out within hours. In fact, there were signs at the store's entrance as well as in the meat section telling customers that they were only allowed to buy two packages of chicken with each shopping visit. As people have been hoarding chicken. Not sure why beef, pork, and other meats aren't as sought after, but this was the state of affairs today. 

Monday, March 23, 2020

Monday, March 23, 2020

Tonight's picture was taken in April of 2009. Mattie was in the child life playroom at the hospital and he was performing magic tricks. What you can't see was that Mattie was surrounded by his social worker, art therapist, chaplain and his school's assistant head. Magic was a great tool for Mattie, because not everyone could perform and do it. He could and that made him feel special. It also was a great ice breaker, as many of Mattie's health care team would watch, ask him questions, and this would help him break out of the shell of armor he developed while in treatment. 


Quote of the day: The latest Coronavirus counts in the US according to Johns Hopkins:
Tested positive..... 41,708
Deaths due to the virus......573

As we face the beginning of week two in social isolation, we escaped to Roosevelt Island to walk Sunny. I figured this would be the perfect day to visit the Island, as it was raining and in the 40s. I was correct! We practically had the whole Island to ourselves. 

The signs of spring all around us. 

The beauty of Sunny is he doesn't seem to notice that anything is wrong, or that our world has been turned upside down. Which is great for us, as caring for him, gives us some sense of normalcy. 

Can you see the three bucks? Look closely they are there and they were as fascinated by us as we were of them. 

Sunday, March 22, 2020

Sunday, March 22, 2020

Tonight's picture was taken in April of 2009. Mattie was in his room playing. You will notice that there was chaos all around us. We built forts made out of blankets and had toys and gifts piled up all around us. Because Mattie had trouble moving around and couldn't walk, he started using hand grabbers. Honestly Mattie's spirit and resilience were amazing, because the average person facing his same physical challenges and cancer treatment most likely would have been cowering in the corner.  






Quote of the day: Total confirmed Coronavirus cases in the USA: 32,644. With total deaths in the USA: 402. Info provided by Johns Hopkins

I opened up our blinds this morning and saw...... police cars and trucks! This is Route 66, a main highway in our region. Yet things were coming to a stand still. I immediately knew why...... they were trying to prevent traffic to the tidal basin where the cherry trees are located.  

This afternoon, we took Sunny back to the National Mall. I could feel my anxiety as we were approaching the Mall, because I was fearful of running into groups and groups of people like we did yesterday! 

However, this was today's sight! This is Independence Avenue, a main route through our City. It was closed off and therefore the traffic jam we saw yesterday in this location was non-existent today.

Instead Independence Avenue was open to walkers, bicycle riders, and skaters. We passed many people who felt that DC should always close off this avenue during Cherry Blossom season. As there is something special about walking the city without car traffic. 

The trees are glorious! It almost looks like they are covered in snow. 

The backdrop of the Washington Monument. Though there were people walking about, it was NOTHING like yesterday. Social distancing was happening and I was thrilled to see a police presence. 

Glorious no? A sight to be seen during the absolute chaos we are facing each day. 

A close up. We all have ways to cope with the intense stress we are living with, for me it helps to walk and to check out the surprises nature has in store for us this spring. 

The Washington Monument and the Cherry Blossoms. 

Right outside our complex is this wonderful planting! Vibrant and springy. To me this gives us hope. Hope which I admit is hard to hold onto when we are told that we need to stay in place for what could be months.