Saturday, September 21, 2019

Saturday, September 21, 2019

Tonight's picture was taken on September 7, 2008. Mattie was in his second month of receiving chemotherapy. However, Mattie became ACTIVE at night. Well he was active all hours of the day, not just at night. Chemotherapy and living in the hospital 24/7 shut down Mattie's sleep/wake cycle. So literally he was always ON. That evening Peter tried to lighten the mood in the room and blew up gloves for Mattie. Mattie thought they looked like turkeys. So he did a turkey puppet show from the window of his room. Naturally when nurses and others passed by the window, that inspired Mattie to perform. 



Quote of the day: Midnight not a soul on sad scene left, weary heart that has been reft from fleet beat on life's stage. Despite spotlights only echoes haunt empty stalls, castaway cats have sprung their cage. ~ TS Elliott (the inspiration for Andrew LLoyd Webber's musical piece entitled Memories)

This year, Peter and I decided to do something for ourselves. Since we both love music (and met in our college's choir), we bought a subscription to the Kennedy Center's musical series. Today was the first show, Cats. 

I wasn't sure how I would react to Cats. I say this because I saw it in NYC when I was 13 years old. Back then, I can vividly recall that I disliked the show. Even though I have always been a cat lover. But with age, life experiences, and a better understanding for human behavior and the challenges of life, I absolutely LOVED Cats today. I think it is a show that can appeal to all ages, and I have no doubt each person comes away with different thoughts and feelings about the show. Regardless of age, Webber's musical score is memorable. In fact, people were humming it on the way out of the theater. That to me is always a sign for how memorable and good a musical actually is. With regard to Cats, it is 4th longest running musical on Broadway. 

Cats is a remarkable show that requires incredible dancing skills and energy. The remarkable thing is that these dancers were singing the whole time while doing jumps and feats in the air. Even if one doesn't like the story line (and critics don't as they feel there is no meaningful plot and the show has no substance), you can't ignore the talent that performed in front of us. The whole cast got a standing ovation, which doesn't mean much at the Kennedy Center - since people stand for just about everything, but in this case IT WAS WELL DESERVED!

In a nutshell..............Cats is a sung-through musical composed by Andrew Lloyd Webber, based on the 1939 poetry book Old Possum's Book of Practical Cats by T. S. Eliot. It tells the story of a tribe of cats called the Jellicles and the night they make the "Jellicle choice", deciding which cat will ascend to the Heaviside Layer and come back to a new life. I included a review and a trailer for the musical below. You will see what I mean about the dancing, costumes, and music. It is a show that makes cats come to life, but in all reality each of these cats in a way mimics our human lives, personalities, and existential issues. 


The trailer:
https://www.youtube.com/watch?v=y7tU5HQE0sE


Washington Post Review of Cats:

https://www.washingtonpost.com/entertainment/theater_dance/cats-the-musical-proves-again-it-has-way-more-than-nine-lives/2019/09/20/52fbdfae-dbbb-11e9-adff-79254db7f766_story.html

Friday, September 20, 2019

Friday, September 20, 2019

Tonight's picture was taken in September of 2008. That week we took Mattie to New York City to be evaluated by doctors at Memorial Sloan Kettering. Though things were difficult, this was before Mattie had any of his limb salvaging surgeries. So Mattie could easily walk around and do things for himself. Which he prepared. Between hospital visits, we took Mattie to the famous FAO Schwartz toy store. Mattie did not have a lot to smile about, but seeing the vast array of toys, games, and items peeked his curiosity. A moment of happiness, which will always be remembered. 



Quote of the day: Visibility doesn't automatically translate into value, don't just be everywhere, be where you are most needed. ~ Bernard Kelvin Clive


I received a phone call today from a social worker at a hospital in Missouri. Naturally whenever I get connected with someone out of our DC area, I always ask.... 'how did you hear about us?' She explained that she knows other social workers from around the country, and they told her that Mattie Miracle is an "excellent charity." As tonight's quote points out, visibility doesn't translate into value. There are so many non-profits that focus on supporting people with cancer, and even more of these organizations that are well promoted and have great visibility. Perhaps this is something Mattie Miracle can hope for years down the line, but in the mean time I am very happy that where we are needed the most, people know about us!

This social worker told me that it is hard to find non-profits that solely focus on psychosocial care. Yet when she does internet searches, Mattie Miracle kept popping up. So she went to our website and started reading! She is indeed correct, which is what makes Mattie Miracle unique. We are the ONLY national non-profit dedicated to awareness, advocacy, support, and research of childhood cancer. Amazing no?

From our conversation, I realize that this is a social worker who goes above and beyond at her place of work. So much so that she balances her hospital work and than after hours puts together groups of patients and their families and takes them on social outings in the community. Totally unheard of! So in essence she is balancing two jobs for the hospital. She proposed an idea to me which she wants me to consider and is asking for a $5,000 grant to achieve her goal of supporting children with cancer and their families. Given that the focus is psychosocial care, she needed to find a Foundation who was speaking her language, and could potentially fund her. 

Thankfully, given our decade long of work in the cancer community, we are well connected with various professionals. So I wrote up her idea and started circulating it around to our researchers and our other social worker contacts. Individuals who work on the national level meeting the training, educational, and professional development needs of the profession. Having these networks is crucial because they know Mattie Miracle and they also know the needs within treatment sites across the country. Therefore they can help us sift through a solid idea from a questionable one. 

In any case, today's call reminded me once again, that we learned so much from Mattie. Having gone through his cancer journey provided us with an education I wouldn't wish on any parent. Yet if this is our life circumstance, we might as well do something with all this knowledge. Today's call signaled to me that indeed we are definitely on the right track, meeting a need, and slowly but surely we are becoming an organization that is known for NOT BEING JUST ABOUT THE MEDICINE.

Thursday, September 19, 2019

Thursday, September 19, 2019 

Tonight's picture was taken on September 12, 2008. Mattie was home between chemotherapy cycles and that day decided to put together a foam puzzle of the world map. Mattie had a great time doing it and then once it was completed, I had him sit on the puzzle and I entitled this photo.... 'Mattie sitting on top of the world.'


Quote of the day: It is the secret of the world that all things subsist and do not die, but retire a little from sight and afterwards return again. ~ Ralph Waldo Emerson


Round two at the dentist's office today. Everyone seemed pleased with my progress since Tuesday. Though achy, I think it feels better to have that permanent partial crown out of my mouth. I really had trouble believing that some people have a sensitivity to the porcelain bonding agent associated with the crown. But if I did not see the difference for myself, I probably wouldn't believe it!

Unfortunately I missed this Facebook Live session today, in which the lead researcher for the Psychosocial Standards of Care, Lori, presented on a panel. The panel took place at the National Institutes of Health (NIH). NIH wanted to acknowledge childhood cancer awareness month and decided to do this live chat today. NOT TO TALK ABOUT THE MEDICINE, but instead to focus on psychosocial care. I tell you this is HUGE! A huge change and a serious acknowledgment that comprehensive care must include psychosocial care. NIH is all about the medicine and it funds the most significant clinical trials addressing childhood cancer. Which is why the fact that they chose to talk about something other than the medicine, stunned me. 

Peter participated in the Facebook Live session today. Check out the video link below of the session. Specifically, go to minute 22:00 (where you will hear Lori talking about Peter and me) and be sure to see the medical doctor at minute at 38:26 (absolutely priceless!).


NIH Facebook Live Session:

https://www.facebook.com/cancer.gov/videos/1287919811387799/?__xts__[0]=33.%7B%22logging_data%22%3A%7B%22page_id%22%3A127165553989732%2C%22event_type%22%3A%22clicked_all_page_posts%22%2C%22impression_info%22%3A%22eyJmIjp7InBhZ2VfaWQiOiIxMjcxNjU1NTM5ODk3MzIiLCJpdGVtX2NvdW50IjoiMCJ9fQ%22%2C%22surface%22%3A%22www_pages_home%22%2C%22interacted_story_type%22%3A%22565413710334575%22%2C%22session_id%22%3A%223a5bdd97b1299ee25c3656686b469f9e%22%7D%7D

Wednesday, September 18, 2019

Wednesday, September 18, 2019

Tonight's picture was taken on September 20, 2008. Mattie was in his second month of cancer treatment. I do not think I ever posted this photo on the blog while Mattie was alive. I tried to stick to more positive photos since I knew his cancer support community was reading the blog daily. It was a fine line I walked back then to balance the reality of childhood cancer with being sensitive to the minds and hearts reading Mattie's journey. Nonetheless, Peter and I faced many stressful, hopeless, and helpless scenes where Mattie was absolutely miserable and it was out of our power to control or alter the situation. 


Quote of the day: If suffering brought wisdom, the dentist's office would be full of luminous ideas. ~ Mason Cooley


Today is day two of dealing with achy teeth. On Tuesday, I had the pleasure of spending three hours at the Dentist, dealing with drills, the noise associated with it, and the removal of a partial crown and the replacement with a temporary one. I can safely say that with tooth pain, comes headaches, and the whole thing has made me agitated. The fun continues though as I head back to the dentist tomorrow. 

This is a typical pain and emotional cycle diagram. I know it intuitively well, because I feel like I live it! Pain is influenced by emotions, and the cycle of pain and emotions are interrelated. Emotions may directly impact physical change as well. 

I live with several chronic issues like daily migraines and fibromyalgia, yet for the most part, I have learned not to let these issues permanently slow me down. However, when you add another pain to my already full plate, that can tip me over the edge. This whole tooth thing was not a welcomed visitor this week as it tires me out from getting things done and even writing the blog. 

Tuesday, September 17, 2019

Tuesday, September 17, 2019 -- Mattie died 520 weeks ago today.

Tonight's picture was taken in September of 2008. I will never forget this moment in time. This specific photo was taken in the halls of Memorial Sloan Kettering Hospital. We took Mattie to NYC (naturally with symbolic Big Apple behind Mattie) to be evaluated by an oncologist and surgeon. As well as to see if Mattie qualified for an experimental treatment run through the Hospital. Everything about this Hospital left me with bad memories. From inconsiderate doctors, a facility that isn't user friendly, to nurses having to perform patient care in the middle of hallways because there were no rooms, or private areas to receive care. Even the child life playroom was noxious. Instead of an inviting space to play, it looked more like a big warehouse, with the noise level of Grand Central train station. Needless to say, we were all tense, anxious, and highly stressed out. It was at this Hospital, Peter and I learned that NO CHILD HAD EVER SURVIVED with Mattie's form of cancer. So instead of treatment, they recommended opting for end of life care. A visit NEVER to be forgotten. At the end of the day, they may have been correct about Mattie's prognosis, but it was how this information was delivered to us that was inhumane and with a complete lack of compassion.


Quote of the day: Some tortures are physical And some are mental, But the one that is both is dental. ~ Ogden Nash


I never had the fear of going to the dentist. To me there may have been some uncomfortable visits in the past, but for the most part it was fine. This began to change this spring, when my dentist wanted to do preventative maintenance and remove one of my old filings and replace it with a porcelain partial crown. He explained why, showed me the issues with my old filing and I decided to take his advice and do the procedure in hopes of preventing issues down the line with my tooth. 

Well that was the beginning of the end! The whole left side of my mouth hasn't been the same since. So much so that I can't chew on that side nor consume hot or cold beverages. I truly assumed something was wrong with my nerves. Any case, a few weeks after the partial crown placement, I went in to have an adjustment. That did not help in the least. So today, I went back to the dentist and discussed the problem with him. He took xrays and everything appears to be normal. Of course how that can be is besides me, because I don't feel normal. Instead, I am dealing with throbbing pain and great sensitivity. 

So he did a lot of rule outs today, and finally felt that I could be having a reaction to the bonding agent holding the porcelain. He says a small percentage of people have post-placement pain, and therefore wanted to take out the partial crown and put in a temporary one. As the temporary isn't porcelain and doesn't require the same bonding agent. Needless to say I am home after a 2.5 hour procedure and in pain. Making me wonder why I ever agreed to a partial crown in the first place. He says I will feel pain for 1-3 weeks and will then assess it in three weeks. That is if I make it that long. 

While at the office, his assistants were talking to me. They wanted to know if I was a 'Halloweeny' person! Well that is hard to answer without some context. I then told them about Mattie Miracle and how we host a post-Halloween candy drive every November. They thought that was a good idea and then asked why I got involved in this cause. So I explained to them about Mattie, my experiences, and the work we do at Mattie Miracle. They wanted my business card and were going to talk to some of their community groups they are a part of, to see if they are interested in participating in the candy drive. Funny how even a conversation about Halloween can trigger a Mattie Miracle dialogue. 

Monday, September 16, 2019

Monday, September 16, 2019

Tonight's picture was taken on September 6, 2008. This was Mattie's second month of chemotherapy. There was a lot going on in this photo. First of all, Tricia, Mattie's favorite HEM/ONC nurse, was flushing Mattie's iv lines. She understood that Mattie and his "girlfriend," Charlotte, were watching Scooby Doo, so Tricia did not want to block their view or interfere with their time together. Tricia is priceless and still part of our life today. As for Charlotte, you have to give her a lot of credit. She was only 6 years old at that time, but found the courage to come to the hospital often to visit with Mattie, and even get into his hospital bed. That may not sound extraordinary, but I assure you given my experience observing other children's react to seeing Mattie bald and connected to big machines, Charlotte was unique. They were committed friends to each other until the end. 


Quote of the day: Man alone chimes the hour. And, because of this, man alone suffers a paralyzing fear that no other creature endures. A fear of time running out. ~ Mitch Albom

In between working today, I took Sunny outside. We have had him for three years, and only recently has he gotten into digging dirt. Do you see his two big holes? I have read all sorts of explanations for why dogs dig.... for fun, boredom, to find a cool place and escape the heat (especially for heavy coated dogs like Sunny), or even lack of certain minerals in their diet. 

On Sunday, Mattie Miracle will be on the National Mall. We attend Curefest every year. It is an event in which the childhood cancer community comes together to bring awareness of the disease to the public. Many non-profits, like ours, have a tent on the Mall where we feature trinkets and information about ourselves. Today I organized all the goodies we are giving out!

We will be giving away our 10th anniversary t-shirts and drawstring bags, in addition to all sorts of trinkets for children. 

In addition to items, we also need to display information about Mattie Miracle. So I spent some time organizing our placards, brochures, promotional screen, and business cards.

Sunday, September 15, 2019

Sunday, September 15, 2019

Tonight's picture was taken on September 3, 2008. That day, our neighbors surprised Mattie with this huge cowboy doggie, named Dandy Dog Dakota. The dog was designed specifically for Mattie, and the artist even signed the bottom of the dog's shoe. Look at the next photo below. 

It says, Phebe Phillips (the artist).... Dandy Dog Dakota "All bark... no cattle." For Matthew Brown.... "The bravest cowboy we know."









Quote of the day: The 184 souls lost in the terrorist attack at the Pentagon on September 11, 2001, when hijacked American Airlines Flight 77 crashed into the Pentagon, were mothers, fathers, husbands, wives, children, brothers, sisters, co-workers, flight crew, friends, and patriots. ~ Pentagon Memorial Website (https://pentagonmemorial.org)

We have always wanted to visit the 9/11 Pentagon Memorial. Today we finally did it. I would have to say it is a haunting place to visit. I would have to say that typically cemeteries or memorial areas are lined with trees and grass and a lot of greenery. The 9/11 memorial is nothing of the kind. It is not a peaceful place to visit, which I think is the point. You immediately feel like you are on hallowed ground as soon as you enter the memorial. I believe how the architects designed the memorial, that the intention was to serve as a constant reminder to all who visit it and pay respects to the 184 victims, that WE MUST NEVER FORGET. 

The 184 Memorial Units within the Pentagon Memorial are located on the age line according to the year the victim was born.  The age lines, denoted by stainless steel strips that cross the Memorial, begin at the zero line..... spanning from the youngest victim, three-year-old Dana Falkenberg, to the oldest, John D. Yamnicky, 71, a Navy veteran (both on Flight 77).

Given that September 11th was this week, there were wreaths at the entrance to the memorial. These wreaths were from the Association of Professional Flight Attendants (APFA) and the white wreath said, "We remember AA flight crews."

Near the wreaths are the listing of all 184 people who died at the Pentagon. This includes the 59 people on the flight and 125 people who were working in the Pentagon. What struck me immediately was the youngest victim was only 3  years old. She, her sister, and parents all died on that flight. 

I highly recommend visiting the 9/11 website. On it, you can find this interactive map. Using your phone, you can click on each of the memorial benches/units and get a bio on each of the 184 people who died. It is very meaningful and an excellent way to preserve the memories of the victims. 

As soon as you enter the actual memorial, you see on the ground September 11, 2001, 9:37am (the time the plane crashed into the Pentagon).

This is the memorial unit for Dana Falkenberg, the girl who was 3 years old. Under where the flowers are, you can see Dana's name. Can you see the metal plaque in the water? It lists the names of her mother, father, and sister.... all died on Flight 77. 

The units (or benches) in the memorial face one of two directions. Those like Dana, the bench seems to be aiming away from the Pentagon. Meaning you see her name and look up and view the sky and the direction the plane was taking before hitting the Pentagon.

Whereas, the 125 Memorial Units honoring the victims inside the Pentagon, you see the victim’s name and the Pentagon in the same view. 

I did not take this photo. I got it off of Google images. Visitors are asked not to photograph the Pentagon. I am including this photo here, so you understand what I am saying about the units facing toward or away from the Pentagon. 

Keep in mind that the victims are not buried here. Just like at Ground Zero in NYC, there were not bodies to bury. Each Memorial Unit is a cantilevered bench, a lighted pool of flowing water, and a permanent tribute, by name, to each victim, in one single element.  Each memorial bench is made of stainless steel and inlaid with smooth granite.

This memorial unit recognizes the life of Rodney Dickens, who was only 11 years old. No family members appear to be on the flight with him, like with Dana. I can't even imagine the fear this child faced alone on that flight.

Within the Pentagon Memorial, 85 Crape Myrtles are clustered around the Memorial Units, but are not dedicated to any one victim.  

The units honoring victims on board Flight 77 face the direction of the plane’s approach to the Pentagon, while those reading the names of Pentagon victims face the plane’s point of impact on the Pentagon’s south facade.

Given the recent anniversary, there were many flowers around the memorial. On one unit, this bouquet was left. The note says,

The Trofimoff's of Milwaukee, WI will never forget how bright the lives of these Americans were, and will continue to shine.

I would have to say that visiting this Memorial is a haunting experience. While there, we started talking with two couples from North Carolina. They were in town visiting and wanted to see the Memorial. When they found out we lived in DC, they wanted to hear our recollection of the day and what we saw the months thereafter. The conclusion we came to is whether we were here or you just saw it on TV, WE MUST NEVER FORGET what happened. The Memorial illustrated to me how families were permanently impacted and the gravel all around us was a rough and unsettling reminder that thousands of people died on 9/11, and their lives should not be forgotten.