Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

February 28, 2021

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. 

February 27, 2021

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. 

February 26, 2021

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.  

February 25, 2021

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. 

February 24, 2021

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.

February 23, 2021

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. 

February 22, 2021

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. 

February 21, 2021

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! 

February 20, 2021

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. 

February 19, 2021

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." 


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:

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.  

February 18, 2021

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.  

February 17, 2021

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.  

February 16, 2021

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. 

February 15, 2021

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!


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. 

February 14, 2021

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.

February 13, 2021

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.

February 12, 2021

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).  

February 11, 2021

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.