Saturday, April 25, 2020

Saturday, April 25, 2020

Tonight's picture was taken in April of 2008. Three months before Mattie was diagnosed with cancer. If I had to give this photo a title, it would be, "our little engineer." Mattie had an early fascinating with taking things apart and putting them back together. He was actually quite amazing and working together, I can't tell you how many objects around the house we dissected! 


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

• number of people who have been diagnosed with the virus: 933,050
• number of people who have died from the virus: 53,391

We were contacted yesterday by a childhood cancer advocate who wanted a quote from us about PTSD and childhood cancer survivors. In addition, she wanted some links to resources. In addition to what is below, I gave her six peer reviewed articles on the subject. Perhaps you know this information already, but in case you don't, it's important to remember that psychosocial issues for children with cancer (and their parents) do not end when the cancer treatment does!

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Childhood cancer is a family disease. As such there are long term psychosocial consequences that affect everyone in the family. Research shows that adolescent and young adult (AYA) survivors are at risk for developing posttraumatic stress disorder (PTSD) and frequently report posttraumatic stress symptoms (PTSS). With up to 50% of AYA survivors reporting intrusive (recurrent and unwanted memories, flashbacks, physical reaction to a memory of the trauma), avoidant (avoiding places and thoughts), and arousal (irritability, trouble concentrating, trouble sleeping, startle easily) symptoms. However, there are also long-term psychological effects on parents of childhood cancer survivors which include anxiety and depression (20–30%), post-traumatic stress (21–44%), worry (33–75%), disease-related thoughts and feelings (13%) and decreased quality of life.

As we face the Coronavirus Pandemic on a global level, childhood cancer survivors and their families may find that they are re-experiencing many of the same feelings they thought they had already addressed, managed, or overcome. Yet, the Pandemic evokes some of these same feelings, thoughts, and behaviors we had when our child was diagnosed and in treatment. Causing us once again to live with health anxiety, fear about the future, worrying about finances, and forced to make difficult health decisions for our child and family. Childhood cancer families must never forget that we are resilient, resourceful, and we have learned under the worst of circumstances how to manage and cope with a health care crisis. This is important for us to remember as is the fact that you have built up a network over the days, months, and years since your child was diagnosed that you can tap into for support.

Resources:
https://www.chop.edu/centers-programs/center-pediatric-traumatic-stress

https://www.healthcaretoolbox.org/tools-and-resources/14-health-care-toolbox/tools-and-resources/602-covid19-children-and-families.html

https://www.healthcaretoolbox.org/tools-and-resources/surviving-cancer-competently-intervention-program.html

https://www.nctsn.org/

Friday, April 24, 2020

Friday, April 24, 2020

Tonight's picture was taken on May 11, 2009, at the Mattie March. This was an event that Mattie's support community held for him in his honor at his school. Pictured next to Mattie is Bob Weiman, the assistant head of Mattie's school. Bob visited Mattie almost weekly in the hospital and during those visits taught Mattie magic. In fact, the first time I brought Mattie to his school's open house for new students, Mattie met Bob. Bob performed a magic show for the students and it was a turning point for Mattie. Prior to meeting Bob, Mattie did not want to leave preschool nor did he understand why he had to switch schools. However, after the magic show, Mattie seemed more at peace with the change. When Mattie was undergoing cancer treatment, it impacted not only his physical ability, but it also affected his confidence, his ability to communicate with people, and his mood. When Bob came to the hospital to teach Mattie magic, his attitude changed. Magic gave Mattie courage, it taught him that he had unique skills and it also helped him connect with his healthcare providers. Tonight's photo was taken during the magic show at the Mattie March. Bob and Mattie performed their famous Peanut Butter and Booger trick, which Bob now affectionately calls the Mattie Brown!


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

• the number of people diagnosed with the virus: 890,524
• the number of people who died from the virus: 51,017

It was another busy day with video conference calls. Unlike Peter, I had no prior experience with such calls. It may sound easy to have such calls, but if you are used to face to face meetings, then these on-line video calls I would say are challenging. There has to be some etiquette and ground rules because otherwise things get out of control quickly. As it is harder to keep someone's attention through a computer rather than face to face. So some people will kind of drift off and play with their phone or other distractions, meanwhile they are not muting their sound, so you as a participant you can hear everything else going on at that person's house. I have seen people taking phone calls while on a conference call and not muting the sound. One person today was even playing with their dog. It can actually be humorous! 

In the midst of everything else going on, I somehow got signed up to be in charge of recruiting childhood cancer families for a researcher's study in Washington State. This all started because I couldn't find nor generate evidence based infographics that highlight the issues and coping strategies for the childhood cancer community during COVID. Because I couldn't answer this question, I started searching, and searching, and searching. Finally I found a medical doctor who seemed to be interested in focusing on the resilience of cancer patients during the Coronavirus crisis. His focus being on adults with cancer. Until I contacted him, childhood cancer was not on his radar scope. I wanted to change that and also through stories be able to provide more meaningful information to our community beyond eating right, exercising, and staying connected to friends and family. 

Honestly I got so frustrated with my endeavor to create a psychosocial infographic because I could find no substantive information, that at one point I told Peter, "FORGET IT! I can't find it and I'm giving up." But Peter said to me, "that doesn't sound like you." So with that, I went back at it. I found an intriguing article written by a medical doctor, I wrote to him, then talked with him, and now am involved in the process. Peter and I have been advertising this doctor's study all over social media and we are getting LOTS of responses. Which I assure you is time consuming because it involves explaining the study to parents, answering questions, hearing their cancer stories, responding back appropriately, and then finding times to coordinate interviews. Mind you everyone is on a different time zone, as participants are from all over the country. This isn't a Mattie Miracle study, therefore we have nothing at all to gain from this, other than giving a voice to childhood cancer and allowing parents to tell their family's story with cancer and how COVID is impacting them. The study is open to parents whose child is in treatment, parents whose child is a survivor, as well as parents whose child died from cancer. 

On a happy note, I received an email today from Bob, the Magic Man. Bob was saddened to hear that the Mattie Miracle Walk is going virtual this year. As every year, Bob performs magic at the Walk in memory of Mattie. Bob proposed that he offer a virtual show! We are working out those details. But Bob shared with me the links below. He has a magic blog and is also performing one trick a day for the school during the pandemic. If you look at the links below, you will notice that Mattie Brown is in both of them! Mattie, I believe, had a profound impact on Bob. As I know Bob had a profound impact on us. 

5 Reasons Your Child Should Learn Magic
http://blog.sssas.org/5-reasons-your-child-should-learn-magic?success=true

5 More Reasons Your Child Should Learn Magic
http://blog.sssas.org/5-more-reasons-your-child-should-learn-magic

Magic tricks each day:
http://info.sssas.org/weimans_magic_tricks

Thursday, April 23, 2020

Thursday, April 23, 2020

Tonight's picture was taken in April of 2008. Talk about singing in the rain! This was the beauty of Mattie. Days were never boring with him. Mattie loved being outside and had no problem with rain, snow, wind, you name it. Do note that we went out to our deck to water our plants, but notice how quickly that activity changed!


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

• number of people diagnosed with the virus: 873,137
• number of people who died from the virus: 49,478

Today was a busy day. I have to admit, I was never a big phone person before, but now in addition to phone work, like everyone else, I am dealing with Zoom and video calls. I have several of them in any given week, and to me they chew up the day. By the end of the day, I feel like I have gotten nothing done. I am getting increasingly frustrated with my days. 

We took Sunny to his physical therapy evaluation today. The rehab vet says that Sunny is doing quite well and tolerating full weight on the leg. However, Sunny's right back leg has atrophied 6cm already. So he needs physical therapy exercises at home and once a week in clinic. Needless to say, Sunny is NOT pleased with the weekly visits. I can't wait until they do underwater treadmills with him, as he hates water on a good day. 

This afternoon, I had the opportunity to talk to a physician who works at the University of Washington. He is a family physician and also has advanced stage lung cancer. Because of his own immuno-compromised state, he can't directly work with patients now. Yet he wants to contribute and to help out in this time of crisis. So he is doing his part by conducting a qualitative study in which he wants to interview cancer patients or family members and learn more about how they are experiencing the impact of the virus and to uncover issues, unmet needs, and of course hear about ways this vulnerable population is coping. When I spoke to him today, I asked him if he was including the childhood cancer population in his study. He wasn't, until he talked to me. 

So tonight, Peter and I started advertising his study (with his permission) on Facebook and through various childhood cancer platforms. It is my hope that families will wish to participate because I think we are a minority group in the cancer world. The childhood cancer community needs a voice, and I am hoping we can pair those with stories, with the physician who wants to hear, capture, and synthesize them. The reason he is starting with a qualitative study is he wants a quick turn around time in which he can write articles and begin to share information. With of course the long term goal of eventually creating a larger and mixed methodology design. But quantitative studies take time, and frankly these stories and information are needed NOW!

The message we sent out tonight:

Help us give the childhood cancer community a voice during the COVID-19 Pandemic. A physician at the University of Washington in Seattle (his study has IRB approval), is conducting a qualitative study and it looking to interview parents of children with cancer. Please read his informational letter below and feel free to respond to me if you are interested in learning more or want to sign up for a 30-40 minute interview. Much thanks! 

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“The Lived Experience with Covid-19 Pandemic: Qualitative Journalistic Study”

You are invited to be part of a research study about the experience with Covid-19. The Coronavirus pandemic has affected every person’s life. Some communities, especially marginalized groups, people with illness, and the healthcare workforce were affected harder. We want to understand the day-to-day lived experience and the unmet needs of the childhood cancer community (those in active treatment, in survivorship, and bereaved parents). This study is conducted by Morhaf Al Achkar and his collaborators at the University of Washington.

Please consider being part of the study if you meet the following criteria:
1. 18 years of age or older.
2. Psychologically and physically well enough to take part.
3. Proficient in English.

The study consists of 1-3 interviews, 2-3 months apart. Each interview will last 20-40 minutes. The interviews will be conducted over the phone or via video-conference. The interview will be audio-recorded and analyzed. If you choose to take part, you will be paid $25 for each interview. Agreement to be contacted or a request for more information does not bind you to take part in any study.

Thank you again for considering taking part of this research opportunity.

Wednesday, April 22, 2020

Wednesday, April 22, 2020

Tonight's picture was taken in April of 2008. That day I visited Mattie's classroom and got to see some of his illustrated stories. His teacher used to call this portion of the class, "writer's workshop." Where the children would bring in photos from home and then work on creating a story from it. Which meant the children were learning to write not only letters but forming letters into words and developing sentences. I have to admit that Mattie did not like writer's workshop despite the fact that his teacher always said he had a good story to tell. 


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

• number of people diagnosed with the virus: 840,476
• number of people who have died from the virus: 46,611

About two weeks ago, we received feedback from childhood cancer advocates that some type of infographic was needed to capture the psychological and social issues that the childhood cancer community is facing during COVID-19. Certainly we have all been inundated with the more medical infographics almost on a daily basis (wash your hands with soap for 20 seconds; wear a mask or cloth covering in public places; social distance and walk at least 6 feet apart from others; don't touch your eyes, nose, and mouth; disinfect frequently touched objects; etc....). But what about the infographics focused on mental health?

Well don't fear, they exist too! Many of these public educational materials focus on such things as:

1. Keep to a schedule
2. Eat right
3. Exercise
4. Avoid alcohol, smoking, drugs, etc
5. Talk or connect on line with family, friends, or seek professional emotional support
6. Take breaks from the news/media
7. Get enough sleep
8. Take advantage of outdoor activities (while social distancing)

Though I think this is a valid list, it truly isn't specific enough for the psychological and social concerns that arise for the childhood cancer community during this Coronavirus crisis. Yet I have looked on-line, I have searched through the materials provided by other organizations, and basically I can't find any advice or infographics tailored to our community. Mind you I have even listened to social workers give on-line talks about the mental health needs of cancer patients during COVID. Most of what they talk about is listed above. So it is very generic information. 

The problem with all the talks I am hearing is frankly the speaker doesn't start with the simple disclosure that children with cancer and their families live with constant health anxiety and uncertainty. Similar to the uncertainty that the rest of the world is now facing because of COVID. So in a way, the childhood cancer community's skills, abilities, coping mechanisms and RESILIENCE can't be overlooked. After all, going on a cancer journey is not for the meek and in order to survive the day to day stresses of living with the disease, one has to accept and adapt to the minute by minute challenges and the uncertainty about having a future. 

So I continue to be on a quest to describe the psychosocial impact of COVID on the childhood cancer community. Recently I came across the article below entitled, When Cancer and Coronavirus Collide: Fear and Resilience. The title caught my attention so I continued reading. The author of the article is a physician as well as a patient with stage four lung cancer.

In particular, the article states....."Yet people with cancer are perhaps better prepared than many to face an existential threat. We've developed resilience and learned to live in the here and now. When you confront your mortality, you realize that life is finite — there no time but to become your true, authentic self. You start to judge what you do by your own standards and express yourself truthfully." What the author wrote resonated with me. This doctor also wrote a book entitled, Roads to Meaning and Resilience with Cancer. In which he interviewed 39 people with advanced lung cancer and uncovered their coping strategies and how they find meaning in their existence and life. 

Needless to say, I wanted to hear more about these coping mechanisms and therefore, I googled him and found his e-mail address. I wrote to him and he responded. We are having a video call tomorrow and I very much appreciate him taking the time to talk with me, while he is juggling his own patients. 


When Cancer And Coronavirus Collide: Fear And Resilience:

https://www.npr.org/sections/goatsandsoda/2020/03/22/818863524/when-cancer-and-coronavirus-collide-fear-and-resilience

Tuesday, April 21, 2020

Tuesday, April 21, 2020 -- Mattie died 551 weeks ago today.

Tonight's picture was taken in April of 2008. Mattie received a package in the mail from our former neighbors who moved to NYC. Our neighbors wanted to celebrate Mattie's birthday, but in many ways the packing paper around the gift was just as special as the gift itself. They wrote all sorts of fun sayings and birthday messages to Mattie on the paper. Mattie loved it and we taped it to the wall and I snapped this photo to share with our neighbors. Do you see on the bottom of the paper.... they even wrote out the musical notes to the song, Happy Birthday!




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

• the number of people diagnosed with the virus: 820,401
• the number of people who died from the virus: 44,228
• 
  

Two weeks ago today, Sunny had his knee ligament surgery. When we brought him home, this was what his leg looked like.

Now two weeks later, his incision is healing very well and his fur is growing back. Sunny had his two week follow up appointment today with the surgeon. To this day, we have NEVER met the surgeon face to face. All our communications have been through the phone. It is quite the set up. We call when we are outside the animal hospital, a tech comes to our car and gets Sunny, and then the doctor examines him and calls us to chat about her observations. 

Sunny is able to walk on all fours now, but still has trouble getting up from a seated position. Also when he gets up and initially starts walking, he looks arthritic. The vet said this is normal and recommends six weeks of physical therapy to build up his muscles, which were cut in surgery. We return back on Thursday to have a rehab consult, with the specialist. 

On the drive to the animal hospital today, we passed this daycare center. They had a big sign of HOPE in the window!

Unlike in previous years, this is the extent of toiletry donations we received this year. The Coronavirus is the culprit. Nonetheless, we are very grateful for all the items that have come in and will help stock our snack and item carts at hospitals. 

Meanwhile, on April 10, Peter and I went to the post office to mail a check for $10,000 to the Children's Hospital at Sinai, to start the Mattie Miracle Coronavirus Family Relief Fund. A fund that will help families of children with cancer pay for expenses during this challenging time. Now 11 days later, the hospital finally received our check! Can you believe it took 11 days for a letter to get from DC to Baltimore?! I am thankfully it finally got there because tomorrow we were going to drive to Baltimore to hand deliver a check. 

Monday, April 20, 2020

Monday, April 20, 2020

Tonight's picture was taken in April of 2008. Mattie came home from school and it was a lovely weather day. He wanted to fly his kite. Fortunately we have an outdoor area in our complex that is completely fenced in and has the perfect wind drafts for kite flying. Mattie learned to fly a kite and ride a bicycle here!


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

• number of people diagnosed with the virus: 782,159
• number of people who died from the virus: 41,816

This morning I heard about a study that discussed the power of exercise at reducing acute respiratory distress syndrome (ARDS), a major cause of death in patients with the COVID-19 virus. ARDS affects between 3% and 17% of all patients with COVID-19. Based on available information, the federal Centers for Disease Control and Prevention estimates 20% to 42% of patients hospitalized for COVID-19 will develop ARDS.

A researcher at the University of Virginia Medical School asked the following question.... why do approximately 80% of confirmed COVID-19 patients have mild symptoms with no need of respiratory support? His research seems to indicate that an antioxidant enzyme may be the explaination. Our muscles naturally make ExtraCellular Superoxide Dismutase, or EcSOD, but its production is increased by cardiovascular exercise. EcSOD is proposed to help in aiding acute respiratory distress syndrome and the article below talks about specific potential treatments using EcSOD. 

All I know is daily, Peter and I have a walk routine of 5-8 miles. I have no idea what it does for our EcSOD production, but I certainly can speak to how it helps our mental health and stability!


EXERCISE MAY PROTECT AGAINST DEADLY COVID-19 COMPLICATION, RESEARCH SUGGESTS:

https://news.virginia.edu/content/exercise-may-protect-against-deadly-covid-19-complication-research-suggests

Sunday, April 19, 2020

Sunday, April 19, 2020

Tonight's picture was taken in April of 2008. Around the time Mattie was celebrating his 6th birthday. That year, Mattie had two birthday cakes. One big one at his actual birthday bowling party and a small ice cream cake for us at home. I grew up with Carvel ice cream cakes, and I had passed this tradition down to Mattie. Of course with Mattie, I had to cut out all of the chocolate in the cake, so he could eat only the vanilla. Which worked out perfectly, as he always had me around to consume the chocolate. 






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

• number of people who have been diagnosed with the virus: 755,533
• number of people who have died from the virus: 40,461

Today I received this photo! Apparently all of the high school seniors in Mattie's class received a yard sign to acknowledge they are graduating. As graduation has been canceled and the school is working on ways to celebrate these students and their accomplishments. I have no doubt, Mattie's school will be thoughtful to the graduating class and will try to ease the disappointment of not having the closure of graduation. 

Of course, for Peter and me, there is nor will there ever be closure for us. Because for Mattie this is just another milestone in the long list of milestones that we have missed with him. Sure the other students may be disappointed, but there is a big difference between a missed graduation versus death. Life goes on without a graduation and students will have the opportunity to re-invest their interests, hopes, and plan in college. As you can see from this sign, Mattie's school made a yard sign for him. From my perspective there is no winning emotionally as I would have been disappointed if Mattie did not get a sign and at the same time I feel wounded that Mattie died and isn't able to celebrate his graduation. He doesn't have a future and therefore, this sign reminds me of what has been taken from us. 

Though I did not want to walk today, Peter got me outside. We walked around the National Mall and what we saw was LIFE. People were out and about and we even saw the US Park Police. I love seeing those horses!

Though people are social distancing, they are outside! Clearly people are tired of day 32 in lock down. It reminded us that the human spirit is stronger than a virus.