Saturday, January 23, 2021

Saturday, January 23, 2021

Tonight's picture was taken in January of 2009. Mattie was invited to his "girlfriend's" birthday party. As you can see, Charlotte was at the head of the table, and Mattie was given the spot right next to her! Which made Mattie's day! Though Mattie wasn't interested in me taking photos, and decided to hide his face in the tablecloth. Mattie introduced Scooby Doo to Charlotte, so it was meaningful that she had a Scooby themed party! 

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

• Number of people diagnosed with the virus: 24,962,813
• Number of people who died from the virus: 416,907

We took Sunny for a walk at Great Falls today on the Virginia side. When COVID started in March of 2020, Peter and I decided to buy a park pass to national park. It is $35 for the annual pass, and given how often we are there, the pass has been a God sent. 

It was frigid today, with the wind chill it felt like it was in the 20s. But the beauty of owning a dog is that you are OUT and ABOUT regardless of the weather. Sunny forces us outside and interacting with the world around us. Otherwise, I would say we'd never leave our home. 

I could hear the Falls from the parking lot! That is how loud they were. 

It was a wonderful escape surrounded by blue skies, trees, and natural beauty. 

Sunny is our explorer! He loves leading us on our adventures. 

In a way, Sunny reminds me of Mattie! Both weren't thrilled with my need to take photos, but they complied. 

The rest of the day I spent doing Foundation work. Which entailed a great deal of computer time. I feel pressure to get this work done, as tomorrow I have to write January's newsletter for the Foundation. I wouldn't be able to do this tomorrow unless, I got the necessary data I needed and updated our website today. 

I really pushed myself today and given that I am already tired, I feel like I may have overdone it. So that is a signal to me that I have to stop working before it triggers a migraine.  

Friday, January 22, 2021

Friday, January 22, 2021

Tonight's picture was taken in January of 2009. That day Mattie was invited to two birthday parties. This was the second party. Both were friends from kindergarten. As you can see, all the birthday guests were girls. Mattie was the only boy invited. I believe the party had a fashion theme, where the girls got dressed up and were going to do a fashion show. Naturally Mattie was a bit out of his element, but wanted to be there. I was Mattie's legs for the party and carried him throughout the event. I would have to say that the girls did a great job with Mattie and no one treated him differently, which truly was noteworthy. 

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

• Number of people diagnosed with the virus: 24,737,567
• Number of people who died from the virus: 412,239

Can you imagine that the Psychosocial Standards of Care (which was Mattie Miracle's vision) are being used in Iran? In December a hospital in Tehran reached out to us and told us their story. They stand behind the Standards, as they help guide their practice. In fact this hospital is the first international organization to ENDORSE the Psychosocial Standards of Care! I will sharing this press release soon, but to me this is BIG news!

While on a conference call this morning, I learned that the Psychosocial Standards of Care are being used in Botswana too! Which leads me to believe that there are many stories to tell about the Standards and the people implementing them into practice. Stories I wish to find and pull together. Nonetheless, this makes me stop and reflect...... this is all possible because of a 6 year old boy named Mattie who was diagnosed with osteosarcoma. The Standards are Mattie's legacy. 

Sunny and I went out for our daily Roosevelt Island walk this morning. It was a beautiful weather day in DC and we practically had the Island to ourselves. Well except for the deer! They were everywhere!

Because I was holding Sunny, I couldn't snap too many photos. But I saw all sorts of deer.... babies, deer with huge antlers, and many female deer. 

A baby deer along our pathway. The deer on the Island are very tame and used to people. Sunny, though very interested in pursuing deer, is compliant and knows he can't bark or chase!

 

Thursday, January 21, 2021

Thursday, January 21, 2021

Tonight's picture was taken in January of 2009. Mattie was in NYC receiving an experimental immunological treatment for osteosarcoma. In between appointments at the hospital, we tried to do fun and memorable things with Mattie. Such as going up up to one of the observation floors of the Empire State Building. Everyone working in the building was super nice to us and Mattie and Mattie enjoyed sitting on top of the world!

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

• Number of people diagnosed with the virus: 24,610,051
• Number of people who died from the virus: 409,641

Since I have gotten home from Los Angeles, I haven't slept well. We have military trucks and police cars stationed on the highway right outside our bedroom window. They have been there for a week, 24 by 7. This entails lights and noises at all hours of the day. I have come home stressed and the environment around me isn't helping. In addition, yesterday I received three calls from my mom. Each call was about an hour long and it involved some sort of issue to address. To me the chaos and frenzy I lived for a month in LA, seemed to follow me home. It is very unsettling getting calls from someone screaming at you. 

This morning I had a conversation with my long time urologist. I have had issues with her in the past, but I have found a way to make our relationship work because she is competent. But today, I had it. She wanted me to take a form of estrogen about six months ago. Not orally, but topically. So the dosage is supposed to be minuscule in comparison to an oral version. However, when I consulted with my gyn-oncologist in September, she gave me great counsel. She said that NO form of estrogen (even a minuscule amount) comes without risks. Risks, I am mean, potential cancer. Of course that is all I had to hear! So I elected NOT to follow the urologist's treatment plan. When my urologist found this out today, I could tell she wasn't happy with my decision, or even that I consulted another doctor about this! TOO BAD! Not only did I sense this, but she said that her services were no longer necessary for me, as I am working with this other doctor! Absolutely absurd, as she is a urologist and the other doctor is a gyn-oncologist! I held it together, and told her outright, that I still needed to be seen by her, given my bladder history! LORD,,,, who is being the doctor??? 

It was my first day back to Roosevelt Island since I got back to DC. Sunny loved it and we saw MANY deer. Can you see this cutie with his antlers?

This evening, we attended a virtual webinar held by Peter's internist. The doctor is converting his practice to concierge service. Which comes with a yearly fee. But in turn you have access to your doctor 24/7, can get appts that day with him, and have longer doctor visits (45 mins, rather than 15-20 mins). This doctor is tired of being regulated by insurance companies and big hospital systems. He wants to be truly dedicated to patient care, and return to the human element.... which is why he said he became a doctor. Some slides were shown tonight. Look at the percentage of physicians who feel they are unable to practice medicine on THEIR OWN TERMS!!!

This slide says it all! Around 75% of diseases in the USA are preventable! Yet the healthcare industry spends only 3% on preventative services! This doesn't come as a shock to me at all. You only have to interface with the healthcare system once to conclude this quickly. As I say often..... I have to be my own doctor and in the process, all my physicians need to be managed by me. Otherwise, my healthcare falls between the cracks. 

Wednesday, January 20, 2021

Wednesday, January 20, 2021

Tonight's picture was taken in January of 2009. We took Mattie to NYC for a second time. The first time was to be evaluated and the second time was to begin an experimental treatment for Osteosarcoma. That day Mattie visited the HUGE child life playroom at the hospital. Mattie's child life specialist in Washington, DC contacted the child life folks in NYC and told them Mattie LOVED boxes. So they saved many boxes and had them ready for our arrival. Honestly the specialists in NYC did not know what to make out of Mattie and thought his building with boxes was odd. Frankly I could have cared less what they thought! As you can see Mattie and Peter used the boxes to create a big blue airplane!

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

• Number of people diagnosed with the virus: 24,382,311
• Number of people who died from the virus: 404,898

On January 20th, I always post a tribute to my maternal grandmother. She died on January 20, 1994, at the age of 86. My grandmother lost her husband to colon cancer (when she was in her 50's) before I was born. By the time I came along, my grandmother was already living with my parents. So to me a multi-generational household was normal. 

Facts about my grandma:

1. She was born in 1907, in New York. 
2. Both of her parents were born in Italy. 
3. She was the oldest of five siblings.
4. She married at the age of 16. Her husband was born in Italy and was a contractor for commercial and residential properties. 
5. She had three children. Her middle child died (Sudden Infant Death). 
6. Though she did not work outside the home, she had numerous skills. Cooking being at the top of the list. 
7. She was a born caregiver and cared for everyone in her family. 
8. She sponsored many family members to come to America and is in essence was responsible for their successes and improved quality of life. 
9. She was a kind, gentle, caring, and loving person. With a very easy-going personality. 
10. She had two grand-daughters, but she and I shared a very close bond. As I was known to call her "mom."
11. Her favorite color was green. 
12. She introduced me to Days of Our Lives at an early age. To this day, I still watch it. 
13. She played the piano by ear. 
14. She wasn't a fan of chocolate (not unlike Mattie).
15. She wasn't squeamish. She could handle everything from mice to seeing blood. 
16. She did not know how to drive. 
17. She loved to read and was well informed about all current events. 
18. She was a Bob Hope and Bing Crosby fan. As a result, I have seen all the Road to.... movies. 
19. She loved lily of the valley flowers. 
20. She suffered a massive stroke in 1990, which left her physically disabled. She died 4 years later.  

Each morning since I have gotten back from Los Angeles, I find that I have a buddy sitting with me on the couch. This is a new one for me, as Indie typically is "Peter's Cat!" Now that I am home, I find that it takes me about two hours to ease into the day. As I am recovering from my LA  mornings which started at 6am, followed by intense days.  

I am happy to say that I am all caught up on donation acknowledgments. We received 74 donations this December and fortunately I sent out 48 thank you letters before I left for LA! These are the remaining ones I wrote today. Acknowledging donors is CRUCIAL and IMPORTANT to me, as we wouldn't have a Foundation without our incredible supporters. 

This is 23rd Street in Washington, DC. A major artery for the city and for The George Washington University. As you can see, there are military vehicles everywhere! I have seen a lot of things on this street before in the 20+ years that I have lived here. But NEVER this! In fact if someone told me that our city would look like a developing nation in 2021, I wouldn't have believed them. Nonetheless, here we are. 

Tuesday, January 19, 2020

Tuesday, January 19, 2020 -- Mattie died 590 weeks ago today.

Tonight's picture was taken in January of 2009. I will never forget that moment in time. This was our second trip to NYC, so that Mattie could start his experimental treatment at Memorial Sloan Kettering. We stayed at a hotel around the corner from the hospital. We had booked a regular room, however, when we checked into the hotel, they took one look at us and Mattie, and proceeded to upgrade us to the penthouse suite (at the price of a regular room). The suite had two balconies and a kitchen! Not to mention two bedrooms and two  bathrooms. It was truly the most generous and compassionate gift we could have received. Though Mattie really couldn't walk more than a few steps, he decided he wanted to get around the room and explore. Not unlike a toddler, he did this by holding onto or balancing against walls and tables. 

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

• number of people diagnosed with the virus: 24,210,344
• number of people who died from the virus: 401,128

Though I am still not operating at my full capacity, I did return to my computer today. A first for me! I am trying to dig out of email and went through all the donations that came into Mattie Miracle for our December Annual Drive. Honestly given what a horrible year it has been for our Nation and the World, I wasn't sure how this would impact our Annual Drive. Thankfully, which is no surprise to me, we have THE BEST supporters. Many of our supporters have been with us since our journey began. We received 74 individual donations for our 2020 Annual Drive and in total raised close to $20,000. 

For comparison's sake, our Annual Drive..... 

• in 2019 raised $14,000 
• in 2018 raised $18,000 
• in 2017 raised $21,000

A BIG THANK YOU to our steadfast and loyal supporters. Our supporters are our greatest gifts and assets, because they help us make the Mattie Miracles possible and they also believe in us which confirms what we are doing matters and is worth supporting. 

Monday, January 18, 2021

Monday, January 18, 2021

Tonight's picture was taken in January of 2009. I will never forget this day! Mattie had a bone scan to see if new tumors had formed. What should have been a one hour test turned into three hours. Why? Because the tech and radiologist kept seeing things on the scan and therefore wanted more and more images. I finally confronted them and connected them to Mattie's surgeon, who explained they were seeing scar tissue from where prosthetics were placed in Mattie's arms. It is very hard to sit still for a bone scan and Mattie was starving, as he couldn't eat or drink anything to prep for the test! I promised Mattie that we would take him to the Japanese restaurant on the hospital's campus if he complied with the testing. Somehow Mattie managed to endure the testing and this photo was taken at the restaurant. As a treat, Mattie's art therapists and child life specialist also came with us. The man cooking the food at our table, was playing a game with us. He wanted to see if he threw a shrimp at us, who could catch it in our mouths! As you can see, Mattie was laughing watching shrimp flying in the air. 

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

• number of people diagnosed with the virus: 24,045,025
• number of people who died from the virus: 398,588

It was my second full day back in Washington, DC. I came back exhausted from Los Angeles, but it did not really hit me until today. If I stop moving, I fall asleep. I am unable to concentrate on anything, and have yet to return to doing my Mattie Miracle work, which has piled up since I left! I could feel bad or guilty about this, but it serves no purpose. So instead, I am trying to ease back into life without being a caregiver. Which means resting and regaining my physical and emotional strength. 

Sunday, January 17, 2020

Sunday, January 17, 2020

Tonight's picture was taken in January of 2009. Mattie was home between treatments and a teacher from Mattie's school came over to give him a piano lesson that day. This teacher was NOT a music teacher at the school, but did know how to play the piano and was eager to teach Mattie. It was her suggestion, which I appreciated. The keyboard in front of Mattie was given to him by Jerry and Nancy (the dynamic musical duo who volunteered at the hospital and became attached to Mattie). I will never forget the kindness, care, and compassion shown to us by Mattie's support community. 

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

• number of people diagnosed with the virus: 23,871,070
• number of people who died from the virus: 397,008

What a time to live in DC! The city is in complete lock down, over and above COVID. I swear I am in a developing nation, not in the USA. This is the sight we have in front of our building. National Guard and police completely blocking the street! Basically no way to get to the National Mall!

Beside that sight, we also have TENTS all around us in front of our building! Why our complex is doing nothing about this is infuriating, as they have a lot more clout within the city than ONE PRIVATE RESIDENT! I left DC in December and I came back to a major encampment!

This is the encampment I am referring to! In addition to the tents, these folks urinate, defecate, leave garbage, and smoke pot at our doorstep! Of course in the eyes of DC government, I AM THE ONE WITH THE PROBLEM! 

This is quite a welcome home! We are surrounded by military trucks, National Guard HOLDING automatic weapons, and bridges and street closed for at least a week.