Sunday, February 28, 2021

Sunday, February 28, 2021

Tonight's photo was taken in February of 2008. That weekend we took Mattie for a walk on Roosevelt Island. The Island was like nature's classroom and playground for Mattie. On each walking adventure, Mattie would find and claim either a stick, rock, acorn, or leaf. These items would come home with us and Mattie would add them to his pile in our common's area. I can't tell you how many things Mattie collected over the years. In any case, every time we pass the rocks on the Island, I always remember Mattie climbing them and exploring. 

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

• Number of people diagnosed with the virus: 28,594,583
• Number of people who died from the virus: 513,052

It is that time of year when I turn my attention to our Foundation's Walk website. As it typically needs to be reset and updated for our annual May fundraiser. Today I learned that the platform our website used to sit on has been retired. The company has migrated to a whole new and improved system! Sounds good, right? 

I have mixed feelings about this news! Certainly I understand the need to improve technology, that will hopefully benefit our supporters who use the system, but from my standpoint, I now have to invest a lot of time in learning this new platform. Everything from designing the website from the ground up to all the administrative work on the backend that I need to manage like donations, registrations, and raffle tickets. So from my perspective it is a lot of work, work that I hadn't planned on, yet must be done. I started the learning process today, but I am just not happy about the change!

Meanwhile the weather is cold and raw, which inspired me to make homemade chicken soup. I love all kinds of soup, and to me nothing is better on such a depressing winter day. 

Saturday, February 27, 2021

Saturday, February 27, 2021

Tonight's picture was taken in February of 2008, about five months before Mattie was diagnosed with cancer. That day Mattie's "girlfriend," Charlotte came over after school for a playdate. As you can see Mattie convinced Charlotte to use his bed as a trampoline. They both had a great time together. But if you look carefully you will see that Mattie not only had a mattress on his bed, but he also had an aero mattress on top of his mattress. Why? Just because! Mattie would go through phases and he thought this would be a great addition to his bed. It never lasted long, but he liked the notion of climbing up into bed and being high off the floor. 

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

• Number of people diagnosed with the virus: 28,525,254
• Number of people who died from the virus: 511,335

Did you know dogs get cancer? According to the Veterinary Cancer Society, cancer is the main cause of death in 47% of dogs (especially dogs over age ten) and 32% of cats. Dogs get cancer at about the same rate as humans, while cats have fewer cancers. There are over 100 types of cancers in dogs. 

Dogs are not only our best friends in our everyday lives, but researchers are working with dogs who have cancer to help find better cancer treatments for humans! A major side effect of some cancer treatments is heart disease. Not only for humans, but veterinarians are seeing this happen in dogs. Unfortunately the impact on the heart isn't well understood, and therefore can't currently be prevented. Instead, the way side effects are found is after the cancer treatment and the damage has already been done. We certainly know this was the case with Mattie and his cancer treatments! 

While undergoing treatment, Mattie periodically saw a pediatric cardiologist. Who reported that his heart was being impacted by the treatment! Of course as a parent or patient, it is a catch 22! You can't stop the cancer treatment, because that would be a confirmed death sentence. Which is why hearing about studies on our furry friends intrigues me.  

Studies underway now are looking into how cancer therapies impact humans and dogs by using echocardiograms of heart function, and by collecting cell and tissue samples. Ironically, so far the data shows the impact on the heart is similar for dogs and humans. Therefore the hope is new therapies tested in dogs, and found effective, can more rapidly be translated to improving human cancer care. I posted a video below of a Channel 5 news story out of Boston, which highlights the professional connection between a veterinary cardiologist and a human cardiologist, working together to help both dogs and humans. 

Friday, February 26, 2021

Friday, February 26, 2021

Tonight's picture was taken in February of 2008. Five months before Mattie was diagnosed with cancer. That day we took Mattie to Roosevelt Island, and as you can see he was feeding the ducks. Mattie loved feeding the ducks, but I think perhaps all children like this activity. Needless to say, I always had a ziploc full of bread in tow for moments like this! 

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

• Number of people diagnosed with the virus: 28,470,393
• Number of people who died from the virus: 509,983

Last evening I developed an ocular migraine. Which is the tell tale sign to me that a full blown migraine is coming! An ocular migraine is scary because it feels like your vision is changing. You begin to see temporary flashes of stars and zig-zag lines and intense pain, which may be pulsating or throbbing, in one or both sides of the head. When this first happened to me years ago, I honestly thought something was seriously wrong with me! However, I have learned from my doctor that this "aura" happens in 20% of migraine sufferers. Lucky me! The symptoms last for a good thirty minutes and I have learned to just be patient and wait for the zig zagging lines to go away. But it is upsetting as you can't read, drive, or focus on anything until it goes away. 

So the aura is gone, and I am left with the migraine headache. Which perhaps contributes to my frustration. For the past two days, I have been trying to write a description of the research project Mattie Miracle is envisioning. It is great that it is in my head, but now trying to articulate it on paper to share with potential sponsors is proving difficult! In fact, I am so tongue tied, that I walked away from the document for the day. I am hoping for a new lens tomorrow.  

Thursday, February 25, 2021

Thursday, February 25, 2021

Tonight's picture was taken in March of 2008. This was one of the creations Mattie made in his kindergarten class. What was the impetus of this picture? Well that day I was a guest in Mattie's classroom. I was asked to tell a story about a childhood memory of mine and to also bring in photos and an activity for the children to do after my story. So I told the story of my experience on a transAtlantic cruise with my mom and grandma when I was a child. I even brought photos of me on the ship and memorabilia from the Italian shipping line. After my story, I provided  paper, stickers and all sorts of things travel related to the children. So in Mattie's case he drew a picture of the SS Mattie, which included stickers of luggage and dolphins. 

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

• Number of people diagnosed with the virus: 28,396,896
• Number of people who died from the virus: 507,803

As I was getting ready this morning for a full day of chores and work, I received a text message. It was from the coordinator of child life services at Mattie's hospital. She wanted me to know that she was virtually attending a conference on childhood cancer at MD Anderson in Texas. In today's session this slide came up on her screen. She saw it, snapped a photo, and sent it to me.

Seeing this slide made me smile! I know what I am seeing but you may not! This red book with a sun on it is the Psychosocial Standards of Care, Mattie Miracle's vision. The Standards were published in a top tier medical journal, Pediatric Blood & Cancer, in 2015. On the front cover of the journal is Mattie's "Mr. Sun." In retrospect, I am so glad Mattie's art teacher asked Mattie to sign his work! If there is any doubt who this sun belongs to, just look in the lower right hand corner, and you will see a big MATTIE! 

The professional in the lower right corner of the slide is Dr. Barbara Jones. Barbara is a Professor and Associate Dean for Health Affairs at the University of Texas at Austin. Barbara is a social worker by training and has been an integral part of the team to develop the Psychosocial Standards of Care. We have presented at national conferences together, we published a paper together in 2018, and we testified about the long term consequences of impairment from childhood cancer to the Social Security Administration. 

We feel very honored to be connected to Barbara. She is a force, a captivating speaker, and a very compassionate individual. She is definitely an ambassador of the Standards, as this slide clearly illustrates to me. We maybe living through a Pandemic, but the Psychosocial Standards of Care are alive and well. Discussed nationally and internationally and it is my hope one day they will be implemented in the 200 cancer treatment sites around the country caring for children. No one thought the Psychosocial Standards could be created, must less published. That large scientific task was accomplished and we are determined for the Standards to be operationalized so that children and families have access to optimal psychosocial care throughout the cancer journey. 

Wednesday, February 24, 2021

Wednesday, February 24, 2021

Tonight's picture was taken in March of 2008. Four months before Mattie was diagnosed with cancer. Doesn't he look fine? It would have never crossed my mind how drastically our life was going to change! It was not unusual to find us on Roosevelt Island every weekend. Case in point with this photo! Mattie thrived in fresh air, and I grew accustomed to spending time outside regardless of the weather! 

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

• Number of people diagnosed with the virus: 28,321,796
• Number of people who died from the virus: 504,738

I came across this article today entitled, "Communication During Crisis: 5 Principles for Professionals." The crisis in this particular case, which is why it probably caught my attention, was end of life communications. I have to say that most hospitals do not handle this entire subject matter well. 

Accordingly to the hospital Mattie was treated at, it is the physician who is required to initiate the talk to the patient/family about end of life issues. In our case that never happened. It was two of Mattie's nurses who had the courage to share the reality with me! Why is that? I frankly think there are many reasons for the hesitation. One is that physicians are healers, they aren't well versed in death and dying, much less helping patients and families navigate such a crisis. Two, in our case, I think all of Mattie's healthcare team were invested in his care and in supporting us. Therefore, I truly believe many of them were stunned that Mattie's cancer metastasized six weeks off of chemotherapy and they couldn't face end of life issues for Mattie any more than we could. Lastly, medical systems are programmed to do something! But with end of life issues the tasks and activities look slightly different. Medications are no longer given for curative purposes but for comfort and preserving dignity. A mind set change and one the healthcare system is just not set up (or even to have access to those trained in such care) to handle. 

With that in mind, we have to start somewhere and the easiest way to show support during a crisis is with communication. The article mentioned how good communication about end of life issues can help family members with grief. Whereas, poor communication can do the exact opposite, potentially causing higher levels of depression, anxiety, and post traumatic stress in family members. How our doctors and health care providers talk to us during these life and death moments do have long term effects. 

I certainly remember on the day that Mattie died, we asked one of the doctors what he had learned from Mattie? He was a big researcher, and given that Mattie's cancer case was so rare, we were hoping that Mattie's experience enlightened him as a scientist. To this day, I still remember what he said! In front of me, Peter, my parents and many other healthcare providers surrounding Mattie's dead body, he said he....learned nothing! NOTHING! How is that possible!???? I certainly learned a lot, even about the science and the horrific treatments which were ineffective for Mattie! So why didn't he? Well that may require a LONGER response, that goes beyond the scope of this particular blog posting. Simply stated it comes down to communication and compassion. They have to go together. His answer was indicative of his character and narcissistic personality, because even in Mattie's death, he couldn't look beyond himself and have the insight to realize that Mattie's family needed words of understanding, hope, and most importantly we needed to know that his cancer journey mattered and made a difference.

Tuesday, February 23, 2021

Tuesday, February 23, 2021 -- Mattie died 595 weeks ago today.

Tonight's picture was taken in March of 2008. Literally four months before Mattie was diagnosed with cancer. I went with Mattie and his kindergarten class on a field trip to Glen Echo park in Maryland. The kids got to have a bit of a ecological adventure. I am very happy that I went on all class trips that year, because if I waited or put it off, I would have missed out on the experience completely. 

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

• Number of people diagnosed with the virus: 28,239,571
• Number of people who died from the virus: 502,005

Another busy day! Something I couldn't report last week, as it took great effort to just move from my bed to a chair. I was just so congested and tired. Big difference this week. Back and going full speed ahead. Getting lots of things done for the Foundation, including the completion of our CFC (Combined Federal Campaign, like the United Way, but for government employees) application. Emails, questions about our research grants, making connections from one research team to another, and of course my attention is on our annual Foundation Walk. 

I would have never thought that our in person event could be migrated over to a virtual event, but we were forced to do this in 2020. In 2020, we also had an on-line raffle, the only difference is I had solicited companies and businesses early on in 2019, so that I had actual items donated and could easily raffle off. This year, trying to get businesses to donate items toward our raffle is challenging at best. Many people are telling me that they are struggling because of the Pandemic and therefore unable to offer in kind donations to non-profits this year. I absolutely appreciate the quandary. 

In any case, me and our Foundation raffle chair are brainstorming all sorts of NEW ideas to add to our raffle this year. Obviously dining around town and other public activities that we used to feature aren't happening. But did you know there are many companies that have popped up this year offering virtual events. Events such as cooking classes, fitness classes, tea parties, wine tastings, trivia nights, and yes even chocolate tastings! Of course the logistics are a bit complicated with wine, food, and chocolate, as you have to arrange for these items to be boxed and shipped to each participant. Boxes aren't cheap, almost close to the cost of the class by the time you finish!

Any case, I find it fascinating that when forced to think outside the box, we can rise to the challenge as human beings. I can assure you that because of the Pandemic, I was inspired out of necessity to find a way to make our event virtual. I am hoping that that same feeling of necessity also kicks in for us this year with our raffle. Which leads me to what I was hearing on the radio today while walking Sunny. The commentator was talking about the difference between doing a job and selecting a career. As he felt that selecting a career is almost like a calling and when you find your calling, it doesn't feel like work. It is something that drives you forward, even when others think what you are doing is unusual or not in line with how others are thinking or running their businesses, companies, schools, etc (pick a place). 

This notion wasn't novel to me, as my dad has said that to me since I was a child. He really believed in the importance of following your calling or passion. I am not sure that my calling was always within me, or if my calling to run a Foundation was inspired by Mattie. But I do know that Mattie was my greatest teacher and inspiration, and the rest unfolds because of that love. 

Monday, February 22, 2021

Monday, February 22, 2021

Tonight's picture was taken in February of 2009. We placed a photo of Mattie in the center of his "Mr. Sun" painting. Which Mattie got a kick out of! Mattie created this large painting (4 feet by 3 feet) alongside his art teacher in November of 2008. This painting is on display in our living room and it became the inspiration for Mattie Miracle's logo. 

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

• Number of people diagnosed with the virus: 28,184,218
• Number of people who died from the virus: 500,172

It was a busy day for me today! I really feel like I have made a full recovery from being sick last week. Still on antibiotics, but my energy level is back, and even though I walked Sunny in the pouring rain today, I felt like my old self again. 

My day started out with a conference call with a physician. This physician is interested in conducting a study at her hospital on clinician burnout. It was interesting to hear about her hospital, the issues they are facing, and naturally the barrier to providing support to clinicians. It always comes down to money! Which is why I imagine many hospitals have developed their own in-house peer support program to help assess, triage, and provide immediate support to colleagues.

While conversing she shared with me a story about a social worker. This social worker was employed in a prison system before coming to work with children who have cancer. She said that the social worker left the prison system because of burnout. The social worker realized there was very little she could do to improve the system or to help inmates. Yet found working with children who have cancer uplifting. Mind you I don't doubt working with children and their families is empowering, but I guess I have been reflecting all day on the fact that the SYSTEMS this social worker was employed in are similar. Whether we are talking about a prison or a hospital, there are many overlaps. Meaning it is hard to change the thinking about how care is provided in any large system. Most importantly whether working with inmates or patients, there is relapse of issues and also the lack of control to improve the quality of lives of those you serve.

So why does one setting produce burnout and the other setting (which has similar restrictions) doesn't? I don't have answers, but I think it is an interesting question. Certainly trying to prevent burnout has to be addressed at the individual, professional, and organizational levels. Perhaps there were different organizational supports for this social worker between her two jobs. But at the end of the day, I have to say that it is very empowering, life affirming, and meaningful to help people dealing with a life and death crisis like cancer. It is in this very intense set of circumstances that you develop very close relationships and connections and can see how resilience, hope, and the human spirit come shining through. There is a lot that can be learned from children with cancer, and I believe they serve as role models for all of us. They teach us priorities and ways to cope with the impossible. Though not mentioned on the phone call today, I really believe this could be a factor in this social worker's life, and could explain her resilience and satisfaction.