Saturday, August 1, 2020

Saturday, August 1, 2020

Tonight's picture was taken on August 18, 2009. Mattie was home temporarily and was playing with his remote controlled boats in his kiddie pool. That pool was once a place Mattie would go into and play, but given how Mattie was feeling and the fact that his broviac catheter wasn't allowed to get wet, he no longer went in the water. So he sat in a chair, wore his Captain Mattie hat and played with his boats. Mattie loved boats and wanted to save his pennies to buy a real boat one day. That was his wish. It is hard to believe that Mattie died 22 days after this photo was taken. 

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

• number of people diagnosed with the virus: 4,603,204
• number of people who died from the virus: 153,986

Thanks to Sunny, we have outings outside of our home on a daily basis. Given the intense heat, we like to walk Sunny at local parks. It assures us wide open green spaces, peacefulness, and an adventure for Sunny. Given Sunny's age and that he is recovering from knee surgery, we try not to push him. His mind is willing, but the body can't always keep up. Nonetheless, he gets water breaks along the way and time to take in his surroundings. 

Turkey Run Park is a beautiful place! There are trails to walk in the woods and then there is also this wonderful pavement! We like taking Sunny on both trails and pavement. It breaks up the walk. 

Through the trees, you are looking at the Potomac River. It is a wonderful escape from the city and living in constant lock down. 

Friday, July 31, 2020

Friday, July 31, 2020

Tonight's picture was taken in July of 2009, during Brandon's 19th birthday party in the clinic. Mattie and Brandon were diagnosed with cancer around the same time in 2008. Mattie and Brandon, despite their age difference of 12 years, got along splendidly. Mattie called Brandon his "best buddy." That day in clinic, Mattie, Brandon, and Jocelyn (another good friend and mentor to Mattie) celebrated! They played at the art table together and also enjoyed ice cream and cake. It is hard to believe that both Mattie and Jocelyn died from osteosarcoma. 

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

• number of people diagnosed with the virus: 4,541,016
• number of people who died from the virus: 152,922

In Washington, DC, and most areas of the country, we have been dealing with the lock downs associated with COVID-19 since March. That is five months, with still no end in sight. Funny when I think back to the 14 days of shut down originally promised to us in March, I thought that was bad. It sounded bad at the time, but thankfully most of us couldn't fathom this extending passed two weeks. I came across an article today entitled, There are no hours or days in Coronatime (https://www.wired.com/story/coronavirus-time-warp-what-day-is-it/). The title alone caught my attention, because it is true! It is hard to keep track of one day from the next! As each day looks just like the day before it. 

Time, according to Aristotle, is the measure of change. It depends on what is shifting, reshaping, and what remains the same. The article highlights when you are stuck at home day after day, “the brain likes novelty.” “It squirts dopamine every time there’s something novel that’s happening, and dopamine helps set the initiation of the timing of these events.” In this model, the brain clocks those novel experiences, stashes them away as memories, and then recounts them later to estimate the passage of time. No novelty, no dopamine—and then “perceptual systems don’t bother encoding stuff.” 

I agree with the author of this article..... "No one knows when this will be over, or what the world will look like on the other side. Our experience of time isn’t just different because we are fearful or bored, cooped up or overworked. It has changed because we don’t yet know what to measure it against."

Sunny on our daily afternoon walk!

Another deer sighting on Roosevelt Island!

This deer looks like Bambi, no?

As we were coming home, Peter saw something big perched on a window sill. I couldn't believe this was real, but indeed it was a Cooper's Hawk sitting up top having a meal! 

Thursday, July 30, 2020

Thursday, July 30, 2020

Tonight's picture was taken in July of 2009. Mattie was in the outpatient clinic sitting at the art table. As you can see it was a busy place! That day, Mattie and his friend, Maya (the only same aged friend Mattie made in clinic), built a stage for a play out of boxes. They worked on it for a while and then proceeded to act out a play  about space aliens. You may not be able to feel the energy through the photo, but there were many children all around us and they were all engaged when the play unfolded. 

Quote of the day

• number of people diagnosed with the virus: 4,475,979
• number of people who died from the virus: 151,570

We went for a walk today on Roosevelt Island. Check out what crossed our path! The deer are all over on the Island and because there is less people traffic due to COVID, we are really seeing nature come alive this summer. Needless to say, Sunny was VERY intrigued. 

I think deer are quite beautiful and the ones on the island are used to people. After all, we are visiting their home. The deer are frightened of Sunny and keep a close eye on him. 

A close up of the female deer. 

This is a young buck! Can you see his budding antlers?

Have you ever come close up to a spider web? This one was quite extraordinary. Mattie would have appreciated this. 

Did you know.......

Spiders produce silk from their spinneret glands located at the tip of their abdomen. Each gland produces a thread for a special purpose – for example a trailed safety line, sticky silk for trapping prey or fine silk for wrapping it. Spiders use different gland types to produce different silks, and some spiders are capable of producing up to eight different silks during their lifetime. Most spiders have three pairs of spinnerets, each having its own function – there are also spiders with just one pair and others with as many as four pairs.

Webs allow a spider to catch prey without having to expend energy by running it down. Thus it is an efficient method of gathering food. However, constructing the web is in itself an energetically costly process because of the large amount of protein required, in the form of silk. In addition, after a time the silk will lose its stickiness and thus become inefficient at capturing prey. It is common for spiders to eat their own web daily to recoup some of the energy used in spinning. The silk proteins are thus recycled.

Wednesday, July 29, 2020

Wednesday, July 29, 2020

Tonight's picture was taken in July of 2009. As you can see, our living room floor was BUSY! Car tracks, cars, Legos...... you name it, it was in our living room. That weekend, Peter and Mattie built the Lego Taj Mahal together. It truly was labor intensive, but a work of art. The Taj sat in our living room for ten years. At which point, I dismantled most of it, except for its center tower. That remains with us, as I feel it is a symbolic piece of our cancer journey together!


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

• number of people diagnosed with the virus: 4,398,898
• number of people who died from the virus: 150,062

Peter and I have both commented since March that we are dreaming more! As research seems to indicate, we aren't necessarily dreaming more, but we are remembering our dreams more! Why? Our sleep cycles maybe off. Since many of us are working from home, we are sleeping later than usual. The brain normally moves through the REM (the last and deepest part of the sleep cycle) sleep cycle several times a night -- about once every hour and a half. So the longer you sleep, the more dreams you can have. Or we maybe tossing and turning and waking up frequently throughout the night. Thereby, coming into conscious from a dream, which enables us to remember our dream more vividly. 

It is reported that 87% of Americans have had unusual dreams since the pandemic began. I attached a link to an article below. As researchers are conducting a sleep survey and are asking for people to share their dreams. People are having nightmare about getting sick, about feeling helpless, getting attacked, and so forth. The fears we face in quarantine, are popping up at night in our dreams. Our brains are trying to face our anxieties that naturally arise under a crisis, and I would say being locked down for months, forced to socially distance, and wear a mask qualifies as a very big and indefinite crisis.  

The article goes on to discuss the different dreams that non-health care workers have compared to first responders. Noting that doctors, nurses, and other medical personnel are more likely to have dreams about saving someone’s life, and not having any control over what’s happening. When reading this my reaction was, yes, I can understand this. Months and perhaps the first year or so after Mattie died, my dreams were more like the kind of nightmares a health care professional would have. I was reliving Mattie dying in my dreams, but dying in different ways (drowning, falling off a cliff, etc). Either case the end was the same.... Mattie was dead and I couldn't prevent it!

Anycase, if you are like us, and find yourself remembering your dreams since COVID began, you might find this article of interest. 

COVID and Sleep: Sweet Dreams Aren’t Made of This:

https://www.webmd.com/lung/news/20200527/covid-and-sleep-sweet-dreams-arent-made-of-this

Tuesday, July 28, 2020

Tuesday, July 28, 2020 -- Mattie died 565 weeks ago today.

Tonight's picture was taken on July 27, 2008. Only four days after Mattie's cancer diagnosis. I can still remember the feelings we had during that moment in time. It was before the news really sunk in and a plan was developed. Back then it felt like a switch turned on inside of us and we couldn't sleep, eat, or truly sit still. A total level of agitation, anxiety, and fear rolled into one. Yet we tried the best we could to keep Mattie engaged and doing the things he liked. Such as sandbox time on our deck!


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

• number of people diagnosed with the virus: 4,309,230
• number of people who died from the virus: 148,298

Mattie Miracle is proud to announce that the Psychosocial Standards of Care officially have a published toolkit. The toolkit is comprised of the Matrix and Guidelines. 

This toolkit is necessary, because the Standards themselves are voluminous and though scientifically rigorous in their creation, it has been difficult for clinicians to implement them without evidence based guidance. This is where the toolkit comes in. Mattie Miracle has provided on going support for this work and we also paid for the toolkit's publication (specifically providing the public open access to the publication indefinitely). 

I welcome you to check out the publication and don't forget to look at the supporting information link at the bottom of the article to access the Matrix and Guidelines. 

https://www.onlinelibrary.wiley.com/doi/10.1002/pbc.28586

The Matrix, is an assessment tool treatment sites can use to score how well their program meets each of the 15 psychosocial standards of care. The score is provided on a five point Likert scale. The higher a score on the Matrix, the more comprehensive a program is at meeting a Standard of Care. 

The Guidelines are a companion tool to the Matrix. Guidelines provide specific guidance on “how to” improve the implementation of each Standard and the center's level/quality of care.

Just like the development of the Standards (2012-2015), which was a three year process, the creation of the toolkit was a four year endeavor (2016-2020). Truly this type of historic evidence based research is a labor of love and we are so grateful to the core research team for their tireless efforts, commitment, and passion to see the Standards in action. The Matrix and Guidelines will enable this to be possible. Now: 

1. treatment programs will have an easier time assessing whether their psychosocial services are in line with the Standards of Care, 
2. the Matrix and Guidelines will help clinicians' improve the quality of psychosocial care provided to children and families, and 
3. ultimately these tools will enable quality Standards of Care implementation research. 

Monday, July 27, 2020

Monday, July 27, 2020

Tonight's picture was taken on July 29, 2008. Mattie had undergone a bone biopsy earlier in the week and it was time for his big bandage to come off. Mattie did not like the sensation of tape being removed from his skin. In many ways, the motion to remove a bandaged triggered volatile reactions. Mattie did not want me near his arm or the bandage and so you can see him gingerly trying to remove it himself. Over time, as Mattie became more fragile and also more exhausted from chemotherapy, we took over and managed weekly bandage changing and cleaning of his broviac (the catheter in his chest that connected to a major blood vessel in the heart). Every aspect of cancer care required the impossible and the extraordinary from all three of us.  

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

• number of people diagnosed with the virus: 4,276,856
• number of people who died from the virus: 147,303

I received a newsletter from the Evermore Foundation today. I know the founder, as she is a bereaved mom, whose daughter died at the same hospital as Mattie. We actually served on a hospital grand round presentation together after our children died. Like me, she created a non-profit. Her non-profit is dedicated to making the world a more livable place for bereaved people and families. Where all families and professionals have access to care, programs, tools and resources to cope and adapt to loss.

The newsletter came with this link. The link took me to a document entitled, Bereavement Facts and Figures. I encourage you to check it out, because it is noteworthy! The facts that caught my attention were:

1. The prevalence and incidence of bereavement is high due to the “multiplier effect,” meaning for every one death multiple individuals are impacted.
2. Family survivors are now themselves at risk of poor physical health outcomes, premature death, and other adverse consequences that can alter the life course.
3. Parents who lose a child at any age are at risk of premature death as early as age 40, with mothers dying from unnatural causes in the first three years and natural causes 10-18 years later. 
4. Bereaved parents are more likely to suffer cardiac events, immune dysfunction, depressive symptoms, poorer well-being, less purpose in life, more health complications, marital disruption, psychiatric hospitalization, cancer incidence, and premature death as early as age 40.
5. Parents who lose a child before age 40 are at greater risk of developing dementia when compared non-bereaved parents.

Shedding light on the bereaved and the long term consequences of grief is not only necessary but crucial to the health and well-being of our society. Grief is one of those things that truly isn't discussed or adequately addressed and supported in our world. Yet the loss of a loved one has psychological and health consequences for those left behind. Grief isn't just an issue the first year after a death, instead I have learned from personal experience that it is a lifelong journey.

"Speaking Grief" Full Length Documentary Trailer (3 minutes):

Sunday, July 26, 2020

Sunday, July 26, 2020

Tonight's picture was taken in July of 2009. On my birthday! Mattie, with the help of Peter's parents, created this wonderful 3-D lighthouse birthday card for me. He presented it to me and you can see he was beaming with pride. I am so glad we snapped photos of that moment in time and of Mattie's lighthouse. Mattie knew I loved lighthouses and I shared that enthusiasm with him over the years. You can also see the state of our living room while Mattie was in treatment. There were toys and things everywhere!





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

• number of people diagnosed with the virus: 4,212,057
• number of people who died from the virus: 146,732

I came across an article today (posted below) about the use of Google Map technology (started in 2007) to help patients with dementia remember.  I had no idea "BikeAround" is used at hospitals already in the USA and other countries. BikeAround pairs a stationary bike with Google Street View to take dementia patients on a virtual ride down memory lane. As the article mentions, "Patients input a street address of a place that means something to them - a childhood home for instance - and then use the pedals and handlebars to “bike around” their old neighborhoods."

The article talks about how our memories are tied to locations! Think about this for yourself! When we remember moments in time, we typically associate them with the location we were in! I know this is true for me. When I think about 9/11, I remember being in my living room. If I think about when Mattie was diagnosed with cancer, I recall being in a waiting room at Virginia Hospital Center. My memories are contextualized by the places I was in, or my surroundings. Which makes sense why this researcher decided to evoke memories by virtually transporting older adults to a place. 

BikeAround takes the mental stimulation from virtually placing patients in a location they recognize, and combines it with the physical stimulation from pedaling and steering a stationary bicycle. Scientists think this pairing produces dopamine in the brain and has the potential to affect memory management in a profound way.

Needless to say, I found the concept fascinating as memory issues are on the forefront of mind these days. Check out the article and four minute video below!

Meet the researcher using Google Maps to help dementia patients:

https://about.google/stories/bike-around/

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.