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. 

Sunday, February 21, 2021

Sunday, February 21, 2021

Tonight's picture was taken in February of 2009. If you look at it quickly, you probably see Mattie holding a hot glue gun and working on a crafts project. But look closer, particularly at his foot! Do you see the rubber roach? Mattie was a character and he would get into whimsical moods and try to scare me and his nurses with his rubber roaches and spiders. I remember one night, around midnight, Mattie attached a huge tarantula to a motorized car. He then had the car visit the nurses at the nursing station. Fortunately they had a sense of humor and truly played along with Mattie's antics. 

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

• Number of people diagnosed with the virus: 28,119,533
• Number of people who died from the virus: 498,514

We went back to Roosevelt Island today. Unlike yesterday, today was a bit warmer, with no wind. Most of the ice on the island has disappeared, making it a much easier walk. However, the deer were out and about. It is hard to see in this photo, but behind this central deer, there were 9 others! 

The rest of the day I focused on Foundation tasks. As our February newsletter is now scheduled to go out tomorrow, along with social media updates all week. Then I tried to tackle our Combined Federal Campaign (CFC, it is like the government's version of the United Way) application for this year. 

But it is hard to believe we are in February, as I feel behind in plans for the annual Walk in May. It is a strange concept to plan a Virtual walk. Certainly 2020 showed me it is possible to host such an event, but it is hard to figure everything out during a pandemic. Such as what do you raffle off? Our typical dining, traveling, and event packages are inappropriate, so what else is left? Honestly if you have ideas, let me know! 

Saturday, February 20, 2021

Saturday, February 20, 2021

Tonight's picture was taken in February of 2009. You are looking at the ceiling of the pediatric oncology outpatient clinic at the hospital. That year, the art therapists gave children the opportunity to paint the tiles of the ceiling in the center. I believe Mattie painted five in total (the giant roach that you see in this photo, a haunted house, a train track, a rainbow, and a scene from Scooby Doo). Mattie never saw a roach in real life, but he knew the notion of them bothered me. Which further inspired him to collect rubber roaches and even paint an image of a roach for the clinic. Next to the roach was a woman wearing red. Most likely me..... saying HHHHHA (like a scream). Though Mattie loved this ceiling tile, it actually scared several children so after Mattie died, the tile was removed, and no one knows where it went after removal. 

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

• Number of people diagnosed with the virus: 28,065,688
• Number of people who died from the virus: 497,374

Why is the couch pillow and blanket on the floor? I did not put them there! 

This was the scene I walked into a night ago. I was upstairs at the computer for a bit, and then came back downstairs to rest on the couch. Low and behold I found this! What caused this? SUNNY!

Sunny is a very emotional beast. He didn't like that I was ill this week and apparently NOT effectively meeting his needs for attention. When Sunny is not happy, he goes passive aggressive. We learned this early on after we adopted him. As there would be times I would find the cat's bed (which sits on one of our living room chairs) in the middle of the floor. 

All this is a direct message to me from Sunny, saying...... YOU NEED TO SPEND MORE TIME FOCUSED ON ME!

For a week now, I haven't walked Sunny. Sunny loves our walks together and I have heard this is a way dogs bond with their owners. After 7 days recovering, I finally decided to venture out and walk. I did not select the best day as it was blustery and 30 degrees. It literally felt like the temperature was in the teens. 

The boardwalk at Roosevelt Island was like an ice skating rink. I can't say the dirt paths in the woods were much better. A walk that typically takes us an hour, took us two hours today. The only way to manage this was to walk very carefully!

Sunny stopped in his tracks and was focused straight ahead. We came across a family of four deer. 

Want to know how the deer get from one side of the Island to the other.... they jump over the boardwalk. I have seen this sight before but juggling Sunny and his leash makes it impossible to snap photos! Today I captured it. 

Friday, February 19, 2021

Friday, February 19, 2021

Tonight's picture was taken in February of 2009. Pictured with me and Mattie was Jenny, one of Mattie's art therapists. That day we were headed to the outpatient clinic. To do that we had to go down a ramp. Mattie literally wanted us to push him down the ramp and let go. Makes sense since Mattie LOVED roller coasters. To make him happy we ran down the ramp holding the wheelchair! In the background you can see a healthcare professional watching the fun!

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

• Number of people diagnosed with the virus: 27,950,547
• Number of people who died from the virus: 495,015

Did you know that today is National Caregivers Day? National Caregiver’s Day started in 2015 by the Provider’s Association for Home Health and Hospice Agencies to recognize professional caregivers, but in the years since, it has expanded to include all those who provide care for others.

Caregiving applies and impacts all of us at some point in our lives! I recall when I wrote my dissertation on family caregivers, I began the introduction of my Chapter 1 with Rosalynn Carter's quote:

"There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers." 

TO ALL THE CAREGIVERS OUT THERE, OUR SOCIETY THANKS YOU!  CAREGIVERS ARE SPECIAL, SELF-LESS PEOPLE, WHO DEVOTE THEIR TIME, RESOURCES, ENERGY, and LOVE TO CARING FOR FAMILY MEMBERS AND FRIENDS!

Here are some caregiving facts:

1. More than 1 in 5 Americans (21.3%) are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. 
2. It is estimated that there are 53 million family caregivers in the United States, up from the estimated 43.5 million in 2015.
3. Most caregivers of adults care for a relative (89%), typically a parent or parent-in-law (50%), spouse or partner (12%), grandparent or grandparent-in-law (8%), or adult child (6%), though 10% provide care to a friend or neighbor.
4. Many caregivers live together with their recipient (40%), a proportion that has grown since 2015 (34%). 
5. As in 2015, older caregivers tend to take care of similar-aged recipients, with 74% of caregivers ages 75 and older caring for a recipient age 75 or older.
6. Compared to 2015, caregivers are more likely to report their loved one needs care because of long-term physical conditions (63% up from 59% in 2015), emotional or mental health issues (27%, up from 21%), and memory problems (32%, up from 26%), including Alzheimer’s or dementia (26%, up from 22% in 2015).
7. The support and complex care tasks the nation’s caregivers provide are largely unchanged since 2015, with today’s caregivers providing about 24 hours of care each week. Nearly all caregivers help with Instrumental Activities of Daily Living (bill paying, housekeeping, grocery shopping; 99%), 6 in 10 help with Activities of Daily Living (dressing, bathing, feeding, toileting; 60%), and nearly 6 in 10 help with medical/nursing tasks (58%).
8. While many caregivers feel their role has given them a sense of purpose or meaning (51%), these positive emotions often coexist with feelings of stress or strain. Caregivers report physical, emotional, and financial strain, with 2 in 10 reporting they feel alone (21%).
9. One in 4 caregiver find it difficult to take care of their own health (23%) and a similar proportion report caregiving has made their own health worse (23%).
10. One in 5 caregivers report high financial strain as a result of caregiving (18%). Four in 10 have experienced at least one financial impact as a result of their caregiving (45%).

To read a full report on caregiving in the US by the National Alliance for Caregiving, go to: https://www.caregiving.org/wp-content/uploads/2021/01/full-report-caregiving-in-the-united-states-01-21.pdf

I remember when I was conducting my dissertation, I did a mixed methodology design. As my dissertation chair believed it was crucial to collect direct information from a portion of my sample of 100 caregivers. I literally did hour long interviews with several caregivers. When I was doing this, I had just given birth to Mattie. So I was sleep deprived and stressed out. Nonetheless, despite how I was feeling, I was touched by each caregiver I interviewed. Their stories were haunting and frankly after each interview all I could say to myself is WOW! How are these individuals managing day to day? It just seemed like they were facing the impossible. Yet when you talk to caregivers they don't discuss the burden. Most will say they aren't burdened at all. In fact, discussing care as a burden produces more stress, guilt, and in some cases anger. Nonetheless, what family caregivers do each and every day does take its toll and it does have long-term medical and mental health ramifications.

Then I parented Mattie with cancer, and it gave me further insight into what the  caregivers said to me in those interviews many years before! Keep in mind that I am not a caregiving novice, as my maternal grandmother suffered a stroke when I was in college. This transformed our home and my mom's life, as she became my grandmother's primary caregiver. When my mom got sick from caregiving and landed up in the hospital, then she needed support. So I have seen the ramifications of caregiving, but somehow caring for a child with cancer added another layer to the mix. Mattie's journey gave me an even greater understanding for the tasks of caregiving and the constant uncertainty and perhaps hopelessness one can develop in the process. 

But at the end of the day, for the majority of caregivers, we take on the role because we love the person who needs help. We feel it is our responsibility and we also believe that no one is going to do a better job than us! Not to mention that the health care system and the health care insurance industry are NOT set up to meet the needs of those who need day to day care. Specialized professional care yes, custodial... day to day care, forget it! Which is why family caregivers step in because if we don't there are really no good alternatives.  

Thursday, February 18, 2021

Thursday, February 18, 2021

Tonight's picture was taken in February of 2009. Mattie was home between treatments and was playing on the floor! Perhaps it seems odd that a child with cancer, having tubes coming from his chest, was on the floor at all. Yet this was the best place for Mattie to play, as standing and walking were very difficult for him after his surgeries. Playing on the floor enabled Mattie to just be a kid. Mattie loved playing with water and his toy vehicles. So you can see in one hand  he was eating a donut and the other he was using one of my kitchen pots for creative play. Truly an amazing sight really because as adults when we aren't feeling well, the notion of moving and finding energy to smile seems impossible.  

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

• Number of people diagnosed with the virus: 27,881,728
• Number of people who died from the virus: 492,646

I am now into day seven of wearing pajamas and trying to recuperate from a sinus infection. I am definitely making progress, but still do not have much energy and have congestion. 

I came across a study today entitled, COVID-19–Related Misinformation among Parents of Patients with Pediatric Cancer. The study mentioned the increased incidence of delayed cancer diagnoses and high mortality rates in pediatric patients, some of which may be a result of the pandemic. Several parents are choosing to not seek medical care in fear of contracting COVID-19 or not having access to medical care because of pandemic-related healthcare office closures. The mortality rate for pediatric cancer has subsequently increased as a result of delayed access to medical care, but misinformation related to COVID-19 may be a contributing factor in this.

Having a child diagnosed with cancer is a nightmare of grand proportion. I can't imagine coping with that as well as the Pandemic at the same time. I read the article, which I highlight below, and I am perplexed with the findings. Specifically that parents of children with cancer are more susceptible to believing misinformation about the COVID-19 virus than the regular non-childhood cancer parent population. I guess I have trouble understanding this specifically because parents of children with cancer are VERY GOOD at searching for accurate information and getting down to the bottom of what is fiction versus reality. Especially since we work with our child's healthcare team. So when in doubt we ask questions and seek input from our providers! Therefore, I must admit that reading this study made me upset. Upset because I felt that parents of children with cancer were not really being understood but instead characterized more as gullible, open to misinformation on the internet, and under so much stress that we can't think effectively. Thereby potentially making poor decisions when it comes to seeking treatment for our children with cancer. 

Of course I realize that wasn't the intention of the article. Rather it was designed to assess myths and perceptions about COVID-19 and to determine how these beliefs might impact on-going cancer treatment. The article states that, "the purpose of this study was to determine whether parents of children with cancer are more or less vulnerable to COVID-19–related misinformation than their counterparts who have generally healthy children."

Rightfully they ponder that, 

"On one hand, parents of pediatric cancer patients, who generally have more experience with medical information and the healthcare system, may be more discerning about COVID-19–related information than their counterparts who have generally healthy children. On the other hand, the COVID-19 epidemic may increase anxiety and fear among parents of children with cancer. These parents may be more attentive to online medical information; thus, they may have greater exposure to misinformation. Parents of children with cancer are also likely to be active on social networking sites (e.g., Facebook groups) relevant to their child’s health condition and, thus, could be exposed to misinformation posted by other members."

Data were collected from 735 parents of children 2–17 years of age during May 1–31, 2020. These parents fell into two groups: 1) 315 parents who had children in active cancer treatment and 2) 420 parents of children without a cancer history. The parents who had a child in treatment, seemed to be younger, had a higher level of education, and reported higher levels of COVID-19 stress. 

Study participants were asked to endorse a series of 17 COVID-19–related misinformation statements taken from the World Health Organization’s website, using the following 5-point response scale: “definitely untrue,” “likely untrue,” “not sure if untrue/true,” “likely true,” and “definitely true.” The items included statements related to susceptibility to (e.g., “COVID-19 only affects older people,” “The COVID-19 virus cannot be transmitted in hot and humid weather”) and prevention of COVID-19 (e.g., “Eating garlic can help prevent infection with the COVID-19 virus,” “Gargling with or swallowing bleach will help get rid of COVID-19”). My image shows all 17 statements used in the study. 

The main finding was that parents of children with cancer were more likely to endorse or believe false statements about the COVID-19 pandemic. That is, they were more vulnerable than parents of healthy children to misinformation. Across the 17 “myths,” parents of children with cancer were more likely to believe myths associated with the prevention of COVID-19 (such as, "Vaccines against pneumonia can protect against COVID-19,” “Eating garlic can help prevent infection with the COVID-19 virus") as opposed to myths related to the susceptibility to COVID-19 (such as, “COVID-19 only affects older people” and “The COVID-19 virus cannot be transmitted in hot and humid weather”) compared to parents of generally healthy children.  

The study concludes that, 

"It is not completely clear why parents of children with cancer are more vulnerable to misinformation. Parents of children with cancer may be at greater risk of exposure to misinformation as a result of greater levels of COVID-19–related stress, resulting in more time spent looking for information online. Moreover, the increased stress levels reported by these parents could be affecting their information-processing abilities, making them more likely to use cues rather than more critical, central processing routes of assessing information credibility."

I think it is noteworthy that parents of children with cancer were more likely to believe myths associated with the prevention rather than susceptibility of COVID-19. Doesn't this make sense? Picture yourself caring for a child with cancer. Wouldn't you be more open to ANY ideas about preventing the contraction of COVID-19 in order to keep your child safe? Given that children with cancer have compromised immunity and therefore are more likely to contract illnesses and diseases within our community, I believe there is desperation as a parent. Since this study was conducted in May of 2020, we really did not know that much about the virus as we do now. So again, I think it is plausible that parents seek outside the box counsel and information to again...... KEEP THEIR CHILDREN WITH CANCER SAFE. I don't view this as vulnerable or gullible. I view this instead as the challenges of being a parent caring for a child with cancer. Parents of children with cancer are confronted with decisions and issues on a daily basis. It is impossible to conclude that parents of children with cancer in this study were vulnerable to misinformation. There are many variables at play when caring for a child with cancer that to me can more easily explain their buy into these prevention myths.  

Wednesday, February 17, 2021

Wednesday, February 17, 2021

Tonight's picture was taken in February of 2009. Notice that Mattie was holding a cupcake! At that point in time, cupcakes were the food of choice. Mattie was hardly eating or drinking anything, so when he requested a particular food, WE GOT IT! In fact, I used these homemade cupcakes as incentives for Mattie to comply with his physical therapy routine. In between cancer treatments, we would be sent home for a few days. Mattie would inevitably get sick, and he would need to be readmitted. While home though, I would bake dozens of cupcakes and then package them up to bring to the hospital. 

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

• Number of people diagnosed with the virus: 27,811,617
• Number of people who died from the virus: 489,933

Yesterday I was contacted by a physician who is interested in investigating healthcare burnout and the impact it has on professionals, patients, and the health care system. I certainly know a lot about "family caregiver burnout" but not that much about professional caregiver burnout. So I started doing some  research into the literature before I talk with this doctor next week. 

So what is professional burnout? Apparently it is "a pathological response to work-related stress," which is running rampant in medicine and impacts all facets of healthcare, including patients, physicians, and the health care system itself. 

The concept of “critical incident stress” refers to the psychological response of individuals or groups after exposure to a traumatic experience. Many types of critical incidents happen within hospitals and impact the well-being of health care staff.  Examples that commonly occur include angry or threatening confrontations with parents, patient relapses, patient deaths, and medical errors. The health care culture may lead to inappropriate internal scripts that tell professionals (nurses, doctors, psychosocial providers) to accept parents’ anger, that if they had just worked a little harder, they could have prevented the patient’s relapse or death, or that the medical error occurred because of their own ineptitude. Critical incidents, and the response to them, can profoundly detract from well-being and consequently impact professional performance. Critical incidents are not the only contributing factor to burnout among medical professionals but they are one element influencing it. Therefore many hospitals are designing peer support programs to help employees manage and cope with stress in order to improve well-being, and reduce burden. 

I know about five years ago, Mattie Miracle tried to fund a support program like this at Mattie's hospital. The reason we decided to do this was there were several critical incidents within the inpatient pediatric units that triggered the need. In that particular case, the incidents I am referring to were several pediatric patient deaths. When Mattie died in 2009, I distinctly remember many of Mattie's nurses telling me that the psychiatrist and chaplain held a debriefing session for Mattie's treatment team. Honestly back then I may have heard this but it did not really register with me, most likely because I was too traumatized myself. 

Yet over time, I realized that Mattie's team most likely needed support and opportunities to safely talk about their experiences caring for my six year old, dealing with Peter and me, and of course having to cope with his death, only six weeks off of chemotherapy. I really had HIGH hopes for our lunch time support program at the hospital. As Mattie Miracle is not only committed to meeting the psychosocial needs of children but that of health care providers as well. 

What I quickly learned about our support program after about two years, was it wasn't working. Why? I am sure I don't know all the reasons, but first and foremost, it is very hard to ask nurses and other staff to stop their jobs and attend a support group meeting at noon (a time picked by the group's co-leaders). Even if nurses did attend, it is hard to transition from a high intense, life and death job, to a closed room to discuss feelings with your colleagues. In addition after each support session, nurses would return back to the units. Where they needed to be able to function, concentrate, and focus on their patients needs. I also wondered about how confidentiality was maintained in these group settings? Needless to say, the support program folded. Which is why I am very interested in reading some of the evidence based research I found on burnout and learn how other institutions have made these peer support programs work.

In my readings today, I came across this diagram outlining common stress responses. It resonated with me because I would have to say medical stress (or probably stress in general) is experienced in all ways (cognitive, behavioral, physical, emotional, and spiritual). Unfortunately with Mattie's diagnosis, there were constant "critical incidents" that I experienced daily. Sometimes multiple times in a given day. Which is why I feel like I could have been the poster kid for this pentagon model, a model which illustrated my stress level for many years to come.