Tuesday, February 16, 2021

Tuesday, February 16, 2021 -- Mattie died 594 weeks ago today.

Tonight's picture was taken in February of 2009. I will never forget this day. Mattie was basically quarantined in his room because they were trying to rule out that Mattie picked up a contagious infection in the hospital. Which was why Mattie's physical therapist and child life specialist were wearing gowns. Mattie's best buddy, Brandon, was receiving treatment too and was in the room next door to us. Brandon wasn't allowed into our room, but participated in Mattie's therapy session from the doorway. Mattie needed a lot of encouragement and support to move his body. Mainly I imagine because it hurt and expending physical energy was challenging for Mattie. I remember the intense isolation from being quarantined for days, and if it weren't for Mattie's nurses, PT, and child life specialist, those days would have been beyond impossible. 

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

• Number of people diagnosed with the virus: 27,739,873
• Number of people who died from the virus: 487,656

The saga continued today. I woke up feeling not much better than yesterday. This morning I received a call from my doctor's office manager. Ironically I have spoken to him in the past. About a very similar issue..... the inability to reach the practice after hours. To me this is a very serious issue, as doctors can't leave their patients without a plan of support after hours (nights, weekends, holidays). 

The office manager apologized for my experience yesterday, said he is looking into why the whole phone system failed, and said this is not how the office wishes to handle after hour patient calls. While talking to me he could hear I was still sick. So he looked into the schedule to see if my doctor could examine me today. No such luck! Instead, he arranged for me to have a virtual visit with a new physician in the practice. At 12:00pm, I got on my computer and followed the check in process needed to meet with a doctor at 12:30pm! It is a new world, and not a good one if you ask me because I truly do not understand how a doctor can meet you on-line and accurately diagnosis your issue, and never physically examine you! Somehow this is counter intuitive to me and though necessary during a pandemic, I hope this doesn't become a medical standard of practice. 

Any case, at 12:30pm, I waited for the doctor to appear on my screen. I could see a message that the doctor was delayed helping another patient. But to remain in the waiting room. Needless to say, about fifteen minutes later I got a call from the doctor on my cell phone. She let me know that the entire office's computer system was down! Wonderful no? Seems to me no one can function without having access to electronics! Also a scary notion. My main issue is I haven't had a sore throat like this as an adult. So I am worried that perhaps I didn't really have a sinus infection. However, she assured me that even if I have strep throat, I am on the right antibiotics to treat that infection too. She has me on high dosages of my friend, Advil, and wants me to check back in with her on Thursday. 

Typically, I can work through whatever I am feeling, but today, because of intense sinus pressure in my head and a throat making it painful to swallow, I took to the couch. 

Monday, February 15, 2021

Monday, February 15, 2021

Tonight's picture was taken in February of 2009. Mattie was sitting on his hospital bed and surrounded by boxes of valentine's he received from classmates in first grade. Mattie even got a huge lollipop as a gift. Mattie never attended even a single day of first grade. But it was very nice that his school included him in this valentine's tradition. 

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

• Number of people diagnosed with the virus: 27,682,645
• Number of people who died from the virus: 486,111

I woke this morning determined to get a hold of my doctor, in order to get antibiotics for what I deem a sinus infection. I typically get them at this time of year and I have the classic symptoms (headache, post nasal drip, sore throat, discharge from nose, and nasal congestion). The experience I had was over the top, so much so that I wrote a letter to my doctor's practice. You can get a feeling for my two hour ordeal but reading the letter below!

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I am writing to you to let you know about the patient experience with your practice today, February 15th. I called the main number to the office today because I am experiencing a sinus infection. Given that it is a federal holiday, I expected to hear a recording of the after hours number to call and instructions on how to proceed.

That is not what I heard, instead, I heard the usual recording and pressed #7 to speak to your receptionist. Once I did that, I heard a recording that there were 6 other patients on the line and therefore I had to wait my turn on the phone. I literally waited 30 minutes and gave up.

Then I emailed you my concern as well as left a voicemail on your physician phone line. After which, I called the after hours number on your website. To my amazement, I was connected (not to your answering service like in the past) to a nurse who took down my information and said the on-call physician from your practice would get back to me in 30 minutes (by 10am). If I did not hear back in 30 minutes, I was told to call back.

At 10am, I called back and this time got C., the head of the nursing line. He saw that I called at 9:20am, and explained to me that I could make an appointment today at another practice to be examined by a physician. As a patient of YOUR practice, I was absolutely confused at to why I would get referred to your "sister" practice. If I am patient under your office's care, I expect to be connected to your on-call physician after hours.

C. understood my feelings on this and said that he would send another message to your practice's on-call physician. Needless to say, I never heard from your practice today. C. then called me back at 11am and said that your office never turned on the after hours or holiday back up system making it impossible to reach a physician in your practice today.

C. instead encouraged me to go to a patient website and schedule a virtual appointment, as he knew I wasn't going to venture out to your sister practice. I was able to get a virtual visit with a physician and got access to antibiotics (after less than a 5 minute video call). But this is not the user experience I signed up for when I joined your practice. Fortunately my issue wasn't serious, because if I had a serious issue, I would feel absolutely disconnected and unsupported from your practice. A relationship between a patient and physician is special and when ill, we want to interface with the practice that knows us. Not be told to visit a "sister" practice or worse be shuttled online to interact with a physician who doesn't know us at all.

I would like to hear about your practice's after hour policy. Somehow as a long term patient with you, I had no idea that the practice migrated away from direct interaction with an on-call physician in your practice during holidays, evenings, and weekends. Moving forward I would like to know if this is indeed your practice's policy or an anomaly that happened today. If this is the direction the practice is moving toward, I will need to seriously consider my options.

It is my hope to hear back from you or your office manager because I consider what transpired today to be below standard of care and practice. 

Sunday, February 14, 2021

Sunday, February 14, 2021

Tonight's picture was taken around Valentine's Day of 2009. I will never forget that day! Mattie was insistent that I NOT be with him in the child life playroom that day. Instead, he and his art therapists worked on a special valentine's surprise for me. When I was finally invited back to the room, Mattie's art therapist, Jenny, snapped photos of us! Not to mention photos of Mattie sharing his hand crafted cards with me! What I love about this photo was that it captured the way Mattie used to look at me. Ironically I do not have many photos like this, yet Mattie did this often. He would press his nose against mine and look deep into my eyes. 

 

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

• Number of people diagnosed with the virus: 27,630,443
• Number of people who died from the virus: 485,109

It's not the best Valentine's Day in our household today. As I am under the weather with a sore throat and congestion. This is quite typical for me in February, because for the past three years, I get a sinus infection every February. Nonetheless, it is frustrating to be slowed down on top of the weather and being locked down. 

I received this poem years ago on Valentine's Day. It is very meaningful as so many of us aren't celebrating with balloons, chocolate, and flowers. 

In my inbox this week, I received the article entitled, Grief and Valentine's Day. As I went through the article, they had a list of ideas about how to handle the day. I swear over 50% of the suggestions involved "doing" something, something that involved talking or getting together with other people. Naturally I had to look at when this article was published (2014), because NO ONE on earth is talking about gatherings, doing acts of kindness in person, and so forth today. The Pandemic has changed the WAY WE RELATE TO PEOPLE. Another sad commentary really, that points to how isolated people must feel on an already challenging holiday. 

How did we begin celebrating Valentine's Day? Frankly from what I have been reading, there is NO exact answer to this. Some articles date it back to pagan rituals and even executions. However, another story involves the practice of writing love letters to your Valentine. It's said that St. Valentine wrote the first “valentine” greeting to a young girl he tutored and fell in love with while he was imprisoned for the crimes. Before his death, he wrote her a letter signed “From your Valentine," which remains a commonly used phrase to this day.

What do you think of this story? An English professor, Jack B. Oruch, through research, determined that the poet Geoffrey Chaucer linked love with St. Valentine for the first time in his 14th-century works "The Parlement of Foules" and "The Complaint of Mars." Therefore, Oruch claimed that Chaucer invented Valentine's Day as we know it today. (At the time of Chaucer's writing, February 14 also happened to be considered the first day of spring in Britain, because it was the beginning of birds' mating season—perfectly appropriate for a celebration of affection.)

Whether or not Chaucer can be fully credited, it is true that he and fellow writer Shakespeare popularized the amorous associations surrounding the day. Soon, people began penning and exchanging love letters to celebrate Valentine's Day, and by the early 1910s, an American company that would one day become Hallmark began distributing its more official "Valentine's Day cards." Flowers, candy, jewelry, and more followed, and the rest, of course, is history.

Saturday, February 13, 2021

Saturday, February 13, 2021

Tonight's picture was taken in February of 2006. Mattie was about four years old and together we were making Valentine's for his preschool teachers and classmates. Certainly I could have bought little cards, but I thought it would be more fun for Mattie to glue and create. There were several years where we really made some beautiful heart keepsakes! I can't say I did these projects before Mattie came into my life, but Mattie was a wonderful excuse to try new things and learn together. In fact, it was Mattie who taught me how to use a hot glue gun, which I must admit I have become very proficient in using for just about everything. 

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

• Number of people diagnosed with the virus: 27,570,034
• Number of people who died from the virus: 483,886

I feel like I have a head cold today, but despite how I am feeling, I went out and walked Sunny on Roosevelt Island. Since it was 28 degrees outside, there weren't many people walking other than the deer. Can you see them watching us?

The boardwalk was like skating on ice! Walking was a feat. But if I did not go for a walk today, I would never have gotten out of our home. Which I find is necessary for my mental health. 

Though I tried to capture this on camera, it is hard to see. Every branch was completely covered in a layer of ice.

Friday, February 12, 2021

Friday, February 12, 2021

Tonight's picture was taken in February of 2009. That day Mattie surprised me with a box of Valentine gifts! He had been working several hours in the child life playroom with his art therapists. Then I was called into the room and one of Mattie's therapists started snapping photos of us. To me all the photos were priceless and one of them became my all time favorite. 

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

• Number of people diagnosed with the virus: 27,477,820
• Number of people who died from the virus: 480,446

Several months ago, Peter and I were interviewed by a research team, who was creating a training video for practitioners learning to use the Psychosocial Assessment Tool (PAT).  The PAT is a brief parent report screener of psychosocial risk in pediatric health. Peter and I are passionate about supporting the use of the PAT at treatment centers around the country because this would help to achieve implementation of the first Standard of the Psychosocial Standards of Care (Mattie Miracle's vision). The first Standard states that children and families should receive systematic assessments of their psychosocial health care needs.

This week, we had the opportunity to see 90 minutes of the training webinar. What caught our attention was that we were featured 7 times within the webinar. This implies to me that the content we were sharing was meaningful and helped convey the importance of using this evidence based instrument for clinicians. 

In this portion of the video, I was making a case for why its important to use a screening instrument when assessing children with cancer and their families. 

Unfortunately when a child is diagnosed with cancer, the main focus is the medicine. I remember receiving a spiral notebook with Mattie's treatment plan during the first week of diagnosis. Yet NO WHERE in this plan was psychosocial care or needs mentioned or even considered. The medical treatment for osteosarcoma is barbaric, since every infected bone needs to be removed from the body. One has to think how could anyone cope with such a treatment without a lot of support? Despite the obvious answer to this question, psychosocial care was considered ancillary or an after thought in Mattie's care. What Mattie's journey showed us is that psychosocial care must be considered alongside medical care and the number one way to determine what types of support children and families need is by conducting an assessment first and foremost (like the PAT).  

Thursday, February 11, 2021

Thursday, February 11, 2021

Tonight's picture was taken in February of 2009. Mattie was home between hospital visits and as you can see he created a volcano from a kit. Mattie was intrigued by the science behind the molten rock coming up through the "earth." I can't tell you how many volcanos we watched erupt that year while Mattie was in treatment. Naturally, I really did not care about the mess. If it interested Mattie, made him happy, and it perked up his mood, I was all for it. 

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

• Number of people diagnosed with the virus: 27,382,857
• Number of people who died from the virus: 475,040

In my email inbox today was a study entitled, Characterization of COVID-19 disease in pediatric oncology patients: The New York-New Jersey regional experience. It described the characteristics of coronavirus disease 2019 (COVID-19) and its impact on childhood cancer care in the New York region during the peak of the pandemic. 

This multicenter study included 13 institutions. Clinical and laboratory information on 98 patients (less than 21 years of age) receiving active anticancer therapy, who tested positive for SARS-CoV-2, was collected. 

Of the 578 pediatric oncology patients tested for COVID-19, 98 were positive, of whom 73 were symptomatic. Most experienced mild disease, 28 required inpatient management, 25 needed oxygen support, and seven required mechanical ventilation. 

Delays in cancer therapy occurred in 67% of SARS-CoV-2-positive patients. Of four deaths, none were solely attributable to COVID-19. The impact of the pandemic on pediatric oncology care was significant, with 54% of institutions reporting delays in chemotherapy, 46% delays in surgery, and 30% delays in transplant. 

In this large multi-institutional study, it was observed that the mortality and morbidity from COVID-19 amongst pediatric oncology patients were low overall, but higher than reported in general pediatrics. 

I think the findings from this study are noteworthy and in time we will see the LARGE medical and psychosocial consequence of lockdowns from COVID-19. One thing I know is very certain about cancer.... if you delay treatment there are consequences. I truly feel for parents having to make life and death decisions for their child in the midst of a pandemic. It is heart breaking, because I know all too well that when our child's treatment goes well, we are happy, but when it doesn't go well, we blame ourselves. 

Wednesday, February 10, 2021

Wednesday, February 10, 2021

Tonight's picture was taken in February of 2009. The artwork you see was created by Mattie. That day I taped all his creations (for that week) to the front of his hospital room door. Since Mattie was a frequent flyer at the hospital, practically everyone knew who he was. Yet to me the art work helped his caregivers start a conversation with Mattie. Because over time, the treatment impacted Mattie's behavior, mood, and outlook on life. Meaning he really did not want to talk to other people and despised having chatty conversation. But talking about his art work typically got Mattie out of a funk and engaged in meaningful interactions. 

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

• Number of people diagnosed with the virus: 27,277,461
• Number of people who died from the virus: 471,147

When I got back to Washington, DC in January, I started looking into ways to sign my parents up to receive the COVID vaccine. Given that they live in Los Angeles County, I started with their department of public health. That was a very frustrating experience and it took me about a week of calling at all times of the day to get a hold of a LIVE person and enter my parents names and phone numbers to the LONG registration list. There are clinics and centers all over LA that are working through the County to distribute the vaccine. But given the volume of people in LA, I realized that I couldn't stop with that list. So I began searching chain pharmacies and grocery stores with pharmacies. I tried getting my parents signed up everywhere, but each day, all I found was NO appointments were available. 

Then a friend of my parents wrote to me last night and sent me links to Walgreens, Ralph's (a super market), and Rite Aid. I dropped everything I was doing and started to go through the process to sign up with each store. Again NOTHING. It seems like as soon as the appointments are announced, within minutes they get filled. 

Today while I was having lunch (mind you it was at 4pm), I sat down by the computer and decided for the fun of it to get onto Rite Aid's website site. Unlike all my previous attempts I actually got into the system and also could see that appointments were available! I was STUNNED! So literally I had two windows open on my computer at the same time. Filling out one form for my mom and another for my dad. I was moving like the wind because I had no idea if I was going to get timed out and lose the vaccine spot. 

I have been at it for a month searching for the vaccine and I am hoping that on March 2, when my parents arrive at the pharmacy, they can actually get their first dose. At this point, I am grateful for Rite Aid's COVID qualifier website which was easy to use and the pharmacy is not far away from where my parents live. Because my biggest fear was that they would have to travel 50 miles away to a county site to get this done. 

Tuesday, February 9, 2021

Tuesday, February 9, 2021 -- Mattie died 593 weeks ago today.

Tonight's picture was taken in February of 2009. This conga line was a typical occurrence for Mattie's physical therapy sessions. Mattie's physical therapist understood that the more people involved, the more likely Mattie would sign on to participate. Behind Mattie were Jenny (art therapist), Denise (social worker), Jessie (art therapist) and a physical therapy intern. Boy did the intern get a lesson in creativity that day, as Mattie required his team to always think OUTSIDE the box. 

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

• Number of people diagnosed with the virus: 27,160,308
• Number of people who died from the virus: 466,991

Peter and I did an hour long interview today with Mark Levine. Mark is a childhood cancer advocate and runs a non-profit called Putting for Patients. Mark's organization brings awareness to childhood cancer through its miniature golf tournaments that directly raise funds for Dana-Farber Cancer Institute. 

During the COVID pandemic, Mark is using his creative skills to spread awareness and developed a pod cast called "Help and Hope Happen Here." To date Mark has interviewed over 36 individuals and organizations while highlighting the disease and the many ways our community serves children with cancer. 

Mark reached out to us from Boston, as he heard about Mattie Miracle and our unique psychosocial mission. What impressed Peter and I about Mark is that he does extensive research on whomever he is interviewing. Literally Mark read through our website and truly integrated the thoughts and feelings expressed in my writings. When someone knows and appreciates your work, it is much easier to have a more in-depth and meaningful dialogue. When the podcast goes live, I will post it. 

But some reflections on today's experience were:

1. Peter and I have a very different ways of communicating. I am about setting context and telling stories to illustrate who and what we are about and Peter excels at highlighting research, our activities and accomplishments. In reality both forms of communication are necessary and it could be why the Foundation has been sustainable, as we have different but complimentary skill sets. Peter says we are like "yin and yang, left brain, right brain."
2. It is remarkable to hear about what we do from a FRESH lens. Mark felt what we have accomplished with not a large budget and NO staff is noteworthy. Certainly that could be a platitude to hear, but it wasn't from Mark, because he literally cited all that we have and are doing. So it was feedback with data. 
3. It dawned on me that this year we could reach the $1 million dollar mark of raising funds for children with cancer. Which is quite an achievement especially when you consider that I am not a professional fundraiser. 
4. It is remarkable what we have accomplished, given that the majority of the advocacy world is focused on biomedical care. I know when we originally set out to create standards of care, people thought..... sure, not going to happen. It happened and we are committed for these standards to be operational!
5. Mark asked an interesting question today! He wanted to know what we learned from the publication of the standards? Certainly the answer could be many, many things! But Peter summarized it well! Once the Standards were published, treatment sites realized that there was room for improvement in the quality of psychosocial care offered to children with cancer and their parents. What I also learned from the publication of the Standards is that the majority of hospitals in the USA DO NOT have psychologists and psychiatrists on staff to support children with cancer. Not sure everyone knows this reality. 

As I said to Mark today, our advocacy and awareness work isn't isolated to one group. We work to educate cancer advocates, the non-cancer community, legislators, payors and the entire healthcare profession. 

Some of Mark's podcasts to date:

https://podcasts.apple.com/us/podcast/help-and-hope-happen-here/id1523556392

Monday, February 8, 2021

Monday, February 8, 2021

Tonight's picture was taken in February of 2009. That day we were in the child life playroom of the hospital. A favorite place for Mattie to hang out. It beat being stuck in the hospital room. Regardless of where we were in the hospital, Mattie's preferred choice of clothing was pajamas. That day, Mattie decided to assemble a volcano kit! I took this photo minutes before it erupted. 

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

• Number of people diagnosed with the virus: 27,074,482
• Number of people who died from the virus: 464,747

Today was a very frustrating day. I was given a 500 page document to review this week for a meeting and it literally took me the whole day to comb through it. Mind you, I am not even half way done. So somehow this clouded my whole day, and I had no other time to focus on anything else. Which makes me feel very unproductive. 

Before I sign off, I wanted to share an article that came into my inbox today. It is entitled, Sickle cell target could treat COVID. Scientists are using immune cell proteins as an anti-inflammatory treatment to reduce blood clotting in people with sickle cell disease. But this treatment could potentially also help with similar inflammatory responses that occur with COVID-19. This is because COVID-19, like sickle cell disease, triggers dangerous inflammation and thrombosis (blood clotting), which can lead to the increased risk of strokes, heart attacks and pulmonary embolism (blood clotting in the lungs). It is interesting how our white blood cells can both trigger a full blown immune response to a foreign invader, or can potentially calm inflammation. The trick it getting the right response at the correct time. 

Sunday, February 7, 2021

Sunday, February 7, 2021

Tonight's picture was taken in February of 2009. Sitting next to Mattie is Sally "the story lady." Mattie had a special connection to Sally. She was an artist who volunteered her time on certain days in the hospital. Mattie found her fascinating, engaging, and always looked forward to her visits. Which wasn't true regarding every volunteer. Sally got Mattie acting, singing, and playing music. Even on days where Mattie was in his room and couldn't come to the playroom, Sally came to Mattie. Sally would transform Mattie's room, and she had a special way of getting both of us out of our funks. 

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

• Number of people diagnosed with the virus: 26,990,269
• Number of people who died from the virus: 463,212

In typical bad weather reporting fashion in DC, we had NO accumulation of snow today. Mind you, we were expecting 3-5 inches of snow! Nonetheless, it was a slow morning for all of us. Indie helped herself to the couch and though I report usually on Sunny, Indie does have many cozy places we created for her both upstairs and downstairs. 

Earlier this week I bought two large eggplants. Given that it was supposed to snow today, I figured it would be nice to have a big eggplant parmigiana. Making it easier during the week to have leftovers for lunch. 

I learned to make this recipe from my maternal grandmother, and I taught Peter when we were in college together. We keep the tradition going! In fact, because this is so labor intensive, Peter and I shared the work on this creation. 

Peter cut the eggplant and made the red sauce (following my grandma's recipe) and I cooked the eggplant slices in flour and egg. 

The assembled dish!

Meanwhile it must be deer season! They are ALL out on Roosevelt Island. It was wonderful to have the Island to ourselves today and for the first time this season we saw bucks. 

Isn't he glorious?