Saturday, March 13, 2021

Saturday, March 14, 2021

Tonight's picture was taken in March of 2005. Mattie was about three years old and went to visit his cousins to celebrate Easter. The kids had an Easter egg hunt in the backyard and then came inside for treats. Mattie enjoyed his time with his cousins and the fun and adventures they had together. 

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

• Number of people diagnosed with the virus: 29,394,868
• Number of people who died from the virus: 534,196

You maybe wondering what am I photographing? I was snapping photos today of the various homeless encampments all around us. In fact our neighbor has been taken over. This park is adjacent to my building! Within the park are now 15 tents. Since the tents have arrived, we have litter issues, urination issues, rats, graffiti, and the list goes on.

A close up of our tent city!

If that isn't bad enough, we have this down the street from us. Mind you we live in one of the best parts of the city. Surrounding these tents are governmental buildings and a university!

This isn't the best photo as I took it while Peter was driving. But it is ONE CITY BLOCK filled with tents. The city has brought out porta potties and sinks for the homeless during the pandemic. The irony is I have read many articles about these facilities, which have been reported as not being maintained and water doesn't function. 

I am saddened to see what is happening to the city and once again I wrote to the mayor's office because this isn't a good solution for both the homeless and DC residents.   

Friday, March 12, 2021

Friday, March 12, 2021

Tonight's picture was taken in March of 2005. Mattie was almost three years old. That day we took Mattie to Bunnyland, a springtime  festival at Butler's Orchard in Maryland. Mattie loved going to the farm, taking hayrides, walking through corn mazes, and going on an Easter egg hunt. As you can see "Farmer Brown" was on a tractor ride-on vehicle and was all business. 

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

• Number of people diagnosed with the virus: 29,336,578
• Number of people who died from the virus: 532,312

Yesterday I went for my annual physical. Before I entered the exam room, I was handed a survey on a clipboard. It was in essence a screening tool for depression. Certainly given that we are all locked down because of the pandemic, it maybe not be such a bad idea to assess for psychosocial concerns! I applaud that, but there is ONE BIG problem!!! What is that?

Well I held onto the clipboard throughout the entire time I was in the office! No one asked to see it, not even the doctor! So let's say I was having trouble sleeping, found little interest or pleasure in activities, feeling down, having a poor appetite, etc, how would that have been addressed during my physical? Are they expecting the patient to address it with the doctor? Highly unlikely given the time constraint placed on doctors, and the process and procedure for a physical is time consuming. It doesn't leave much time to talk about psychosocial concerns. 

So what good is it to offer patients a screening for depression if you don't look at it before meeting one on one with the patient? You might as well not even doing the screening! If I was a betting woman, I would guess that the screening is connected with reimbursement from insurers. Therefore the office can check the box that they are doing this and complying. Yet at the end of the day, a patient who is struggling isn't going to feel heard from such a visit. 

Now in all honesty, I am not sure what happened with the screening tool after I left the office. I can imagine someone looked at it, scored it, and then filed it. It is the hope that there would be follow up if patients do score in a range that indicates greater symptomatology. But frankly who knows! I think if doctors are giving patients such a screener, some mention should be made as to why it is being administered and how it will be used to guide care! Otherwise, in some way I feel like I should not even take this screening seriously and worse that I am not part of my own healthcare team. 

The problem with this is internists/family practitioners are the first line of defense for patients. These are the doctors we initially share our concerns with, and if we sense that doctors want us to just stick to all things medical, then our psychosocial issues remain unaddressed. So insurers really need to think about incentivizing medical practices who think holistically and provide outlets for patients to discuss psychosocial issues with their doctors and be linked to resources within the community to support these concerns. 

Thursday, March 11, 2021

Thursday, March 11, 2021

Tonight's picture was taken in March of 2006. Mattie was about four years old and as you can see was very proud of his Lego creation. I love that beaming smile! Mattie gravitated to Legos and what he was trying to build that day was a gigantic train. It was not unusual for us to have train tracks, Legos, tinkertoys, and hotwheel cars all over our first level. Things came out by day, but we made it a point that they also had to be cleaned up in the evening, as this was our family space. Mattie was a lot like me, he was interested in organization and having things clean. 

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

• Number of people diagnosed with the virus: 29,212,779
• Number of people who died from the virus: 530,624

It's been a long day, and given my migraine, I am not writing much tonight! It is hard to believe today marks the date when we learned about the two week shutdown because of COVID-19. I remember thinking 14 days sounded like an eternity back then. Fortunately we weren't told the reality all at once. Which illustrates that in small doses, anything is palatable. I know this philosophy was true with Mattie's diagnosis. If we saw the full picture all at once, we really wouldn't have managed the 14 month treatment journey. 

Wednesday, March 10, 2021

Wednesday, March 10, 2021

Tonight's picture was taken in March of 2006. Mattie was about four years old. Doing one of the things he loved best.... building! A friend sent us these plastic tinker toys and Mattie loved creating all sorts of structures and shapes with them. If you notice behind Mattie was a little doll house. Mattie picked it out at the store one day, and since I was cognizant about gender specific toys, given that I was teaching a child development class, I wanted to encourage all of his interests. However, what I learned from Mattie is that children naturally gravitate to certain things. In Mattie's case it was anything with wheels and any sort of building material.  

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

• Number of people diagnosed with the virus: 29,137,386
• Number of people who died from the virus: 528,652

I had the opportunity to talk with my friend in cancer today. She too lost an only child to cancer. We talked about the challenges of cleaning out our son's room after he died. I assure you it is a nightmare of a task and there is NO right or wrong way to do this or the right time. As I said to my friend.... don't feel bad. When you are ready, you will know. 

This photo was taken by a reporter who came to do a story on us soon after Mattie died. I wanted to illustrate the amount of items we collected over 14 months of treatment. Mattie received mail and packages daily from the hospital and supporters. Given all we were balancing with Mattie, I did not have the time to organize and declutter. Instead, our home started looking like an episode of hoarders. Back then though my point of showing the room to the reporter was to acknowledge the fact that we had an amazing support network. A network who would jump into action when we had a request. One day I remember requesting training wheels for Mattie's bicycle (we had taken them off before Mattie's cancer diagnosis, as he had learned to ride his bike without them) because he wanted to ride it but was afraid of falling off. Within an hour our network dropped off four sets of wheels. The kindness and generosity of our friends will never be forgotten. 

Mattie's things were all around us. In piles! I remember looking at them but had no idea what to do with them! Nor did I have the energy to focus on this emotional task. So I waited, and I waited. 

Then about four years after Mattie's death, I looked at his room and felt like it did not represent his memory well! That inspired me to do something about it. Which meant going through clothes, toys, boxes, and gifts. I can't tell you how much we donated, including thousands of Lego bricks. 

This photo was taken after the clean up process. The room returned to the way it used to look. But as the years continued, the room evolved into my office. Some of Mattie's things were put away, some of his artwork was saved, and again more was donated. I really believe it is a long process and over time, I realized that things wouldn't bring Mattie back, nor do they make me feel better. 

This photo shows another evolution of the room. Which is somewhat closer to what it looks like today. Except Mattie's bed has all butterfly linens and more of his artwork is framed and hanging near the  bed. 

You can google the subject.... "cleaning out your home after a loved one dies," and a lot of advice pops up. Two pieces of advice struck me:

1. Give family and friends gifts of your loved ones treasures. Something to remember them by. 
2. Get a supportive friend to help you.

In fact my friend in cancer asked me about the first one on the list. She wanted to know if I gave Mattie's things to his friends. Like toys, stuffed animals, and clothes. My answer was NO! She asked why. I said that I couldn't bear seeing Mattie's friends playing with his things. Especially since his things meant so much to me, I would hate to see them potentially not cherished or worse given away. So instead, I spared myself and donated the items. 

As for getting support while cleaning out a house, I think that is a personal decision. Certainly I can see that as being helpful, but on the other hand it is hard to be worried about how others will reaction or feel about your loss. In my case, I dug out Mattie's room alone. Would I have prefered company, most likely not. It was something I had to do and on my own timeline. 

Case in point, Mattie's Taj Mahal Lego set was in our home for the longest time. Last year I finally disassembled most of it. I kept the center part and it's on display in our kitchen. But almost 11 years later, I understand that Mattie isn't coming back, no one is going to play with his building, and it is time to clear this space. No one told me to do this, there is NO LIST that can help! You just have to follow your heart and mind, and the rest will come.

Tuesday, March 9, 2021

Tuesday, March 9, 2021 -- Mattie died 597 weeks ago today.

Tonight's picture was taken in March of 2007. We took Mattie to Key West for spring break to spend time with Peter's parents. Outside one of the restaurants we ate at was this car, with what appeared to be a gigantic shrimp on top of it. Of course Mattie thought that was hysterical and deserved a photo. 

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

• Number of people diagnosed with the virus: 29,081,612
• Number of people who died from the virus: 527,389

We heard from Mattie's physical therapist today. She now lives in Washington State, but we still are in communication. It is interesting how our connections with Mattie's care team remain a special part of our lives. I suspect they will always be given the intense reality we faced each day while Mattie was in the hospital. The bond established through cancer is unlike any other I can describe. 

Apparently a group of doctoral physical therapy students have designed an app for children with cancer. The app is called danceable. I can only imagine how much Mattie would have enjoyed this and I would love to see the app demonstrated, just to see how applicable it could be to all children with cancer, not just children with blood cancers (which is who the app is intended for). 

Any case, I am posting the flyer in case any of my readers want more information or want to participate in the focus group! Sounds like a worthy resource and tool, and what I learned first hand from Mattie, was that with kids you can't just do physical therapy exercises like you would with adults. Instead, you have to creatively intertwine exercises into games, and it helps it these games are tailored to the child's interests. 

Monday, March 8, 2021

Monday, March 8, 2021

Tonight's picture was taken on March 5, 2009. I remember that day as if it were yesterday. Several United Airlines employees came to the outpatient clinic to visit with the children and give them teddy bears. Mattie was eager to meet them and appreciated the bear and the airline wings he received. You would be surprised how such a visit perked all of us up and made us feel like we were less alone. It brightened our day and that feeling carried us throughout a difficult admission day to the inpatient unit. 

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

• Number of people diagnosed with the virus: 29,033,369
• Number of people who died from the virus: 525,619

On February 9, Peter and I were interviewed by Mark Levine for his Help and Hope Happen Here podcast. Mark's podcast is designed to bring public awareness to childhood cancer. He does this by interviewing all the stakeholders of childhood cancer, such as doctors, nurses, psycho-oncologists, child life specialists, advocates, and non-profit leaders.

I have to admit that Peter and I have been interviewed by others in the past, and the final product was lackluster. I say this because in these other interviews the story of Mattie and the vision and mission of Mattie Miracle were not well developed and highlighted. Mark's interview of us was beautiful. He did his homework, and thoroughly read our website! He came to our interview with meaningful questions and his one hour interview takes his listener on our cancer journey and development as a Foundation. I am very grateful for Mark's professionalism, for understanding our tagline that IT'S NOT JUST ABOUT THE MEDICINE, and for giving us this opportunity to spread our psychosocial message to the public. 

To me the interview that Mark created is a gift to Mattie Miracle, because it is wonderful to see our work through another advocate's eyes. Mark was able to highlight our 11 years with the Foundation into one hour and if you didn't know who Mattie Miracle before this interview, you will definitely know what we are about and what motivates us after listening.  

Check out our interview with Mark that came out today!

https://www.buzzsprout.com/1218635/8099435

Sunday, March 7, 2021

Sunday, March 7, 2021

Tonight's picture was taken in March of 2009. Mattie went through many food phases while in cancer treatment. The phase would usually last a couple of weeks to a month. This particular phase revolved around chicken tenders and french fries. When Mattie said he was hungry and wanted to eat, we literally would make the world stop to answer that call. Since cancer impacted Mattie's stomach, throat, and digestion, it made him unable to eat.  Seeing Mattie request food was a glorious sight, which was why I probably snapped a photo of that moment in time. 

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

• Number of people diagnosed with the virus: 28,987,905
• Number of people who died from the virus: 524,963

I came across an article entitled, What cancer survivorship can teach us about Covid-19. It caught my attention because it was comparing the long term effects of cancer with that of COVID-19. Two different diseases, but apparently one can learn from the other. 

The biggest myth about cancer is that once you complete treatment, you are done, cured, and life returns to normal. Unfortunately this isn't the case. Once you are diagnosed with cancer, it will always be a part of your life. The treatment alone can cause other physical illnesses (diabetes, heart disease, vision loss, hearing loss, secondary cancers, sterility, etc), as well as mental health issues and challenges. 

Like with cancer survivors, a similar phenomenon is happening with Covid-19 survivors. Long-term symptoms extend beyond obvious targets like lung function to areas such as eye and dental health. And up to 1 in 5 Covid-19 survivors are diagnosed with a psychiatric disorder within 90 days.

Given that we have been dealing with Covid-19 for a year, health providers are beginning to see that the survivorship management model used for cancer patients, may need to be adopted for survivors of the pandemic. 

I literally googled, centers/clinics for post-covid care, and I can't tell you how many articles popped up, like this one (https://www.aamc.org/news-insights/post-covid-19-clinics-help-survivors-recover). Doctors know that some patients will have severe or disabling symptoms post recovery, but the problem is they don't know how to identify or predict which patients this will be! 

We are conditioned as a society to believe that when we get sick, we can go to the doctor, take some medicine, and things will improve. It is hard to believe in the year 2021, that this actually isn't the case for many diseases. Now adding Covid-19 to that long list. It is important that we talk about the long term effects of diseases and that we also develop treatment strategies and plans to help patients and their families manage and cope in order to have a better quality of life.