Saturday, April 18, 2020

Saturday, April 18, 2020

Tonight's picture was taken on April 4, 2009. It was during Mattie's 7th birthday party at the hospital. I am so glad a friend of ours snapped this photo. As you can see, Mattie was very happy to be in the child life playroom, surrounded by friends, and having the opportunity to play, eat cupcakes, and to forget for an hour or two that he was dealing with cancer. 


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

• number of people who have been diagnosed with the virus: 726,645
• number of people who died from the virus: 37,938

I came across the Kaiser Family Foundation poll today while reading about the mental health impact of the coronavirus. I realize the poll was conducted in March, and therefore, I imagine the numbers would be even higher today than they were a few weeks ago. As more and more time is spent in social isolation and living with fear about finances, employment, and the state of our future existence, people are faced with overwhelming stressors. Stressors which impact how we eat, drink, sleep, and how we take care of ourselves. Check out the poll for yourself. I included a link to it below as well as highlighted two of the graphs which caught my attention. As I do think mental health impacts are acerbated by social distancing and isolation, and at some point when things stabilize, we are going to find out the true long term consequences of a nationwide shut down. 

KFF Health Tracking Poll - Early April 2020: The Impact Of Coronavirus On Life In America:
https://www.kff.org/health-reform/report/kff-health-tracking-poll-early-april-2020/

The poll makes one thing clear: If you’re scared, anxious, depressed, struggling to sleep through the night, or just on edge, you’re not alone. The tracking poll by the Kaiser Family Foundation, conducted March 25 to 30, found that 45% of adults say the pandemic has affected their mental health, and 19% say it has had a “major impact.”

Overall, nearly all Americans report that they have either been taking social distancing measures such as deciding not to travel, cancelling plans, or staying home instead of going to work, school, or other activities (92%), or say they have been sheltering-in-place and not leaving home except for essential services such as food, medicine, or health care (82%).

Friday, April 17, 2020

Friday, April 17, 2020

Tonight's picture was taken on April 4, 2009. It was Mattie's 7th birthday. He celebrated his special day at the hospital. Several of his friends came to visit after school and we had a small birthday party in the child life playroom. Mattie was very excited that day as he started his morning by decorating the hospital playroom. When his friends arrived in the afternoon, we had games, cupcakes, puzzle building and as you can see.... lots of balloons. 







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

• number of people who were diagnosed with the virus: 692,169
• number of people who died from the virus: 36,727

The man in this photo was Van. Van was the attorney for my licensure board. A board I have been serving on since 2003, YES 17 years! In 2003, I was still a doctoral student, so this should put into context how long I have worked with Van. 

I remember when I first joined the board, I did not have a solid understanding for the roles and responsibilities of a licensure board. As these types of practical skills and knowledge aren't truly taught or even emphasized in graduate school and training. Which is problematic really, because I can't tell you how many students graduate and have no understanding for the licensure laws and regulations in their state that they wish to practice. 

In any case, I learned quickly that serving on a licensure board is challenging and a large responsibility. Especially when the board oversees ethical violation hearings of licensees and makes determinations on the future of that licensee's ability to practice. I will never forget at various points in our 17 years together, Van telling me that I missed my calling. That I should have been a lawyer as he felt I thought logically and advocated like a lawyer. I took that as a high compliment. 

Last night, I learned that Van died from the coronavirus. Now a day later, I am still shocked by this news. Mind you I saw him on March 13th for a meeting and we sat right next to each other. When I saw him he was fine (and he always believed in eating right and staying healthy), but my understanding was the week after that he started to have symptoms. Symptoms that his doctor did not take too seriously. However, when things started to degrade quickly, he was admitted to the hospital and placed on a ventilator for days. 

This is a huge loss to our board, to DC residents, and to me. I felt like he always had our best interest at heart and I never had to question his priorities. He was a competent attorney and one with great historical knowledge about our board, its laws, regulations, and changes we made to these documents over the years. With Van's death, we lost institutional knowledge, a trusted legal confidante, and a friend. Going forward they maybe able to fill his seat in our meetings, but it will never be the same. We worked 17 years together and we understood each other's style and thought processes. Our relationship was based on respect and I feel he was taken too soon by a virus that should never have gotten so out of control in America and the world. I think Van's death once again reminds me to never take for granted the time we have with each other, as the future of more times together is never guaranteed. 

Thursday, April 16, 2020

Thursday, April 16, 2020

Tonight's picture was taken in April of 2009. That day I took Mattie to the Hospital's outdoor garden area. We paused to take a photo by the art therapy elephant. You will notice lovely tiles on the elephant. Tiles that were designed by children with cancer as well as the nurses. Do you see the Curious George monkey tile? That tile was created by Mattie's nurse, Kathleen. Kathleen created this tile and dedicated it to Mattie. As Mattie's left leg was humorously referred to as "Curious George," since it was the only intact limb, and that leg acted like an arm/hand. 





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

• number of people diagnosed with the virus: 658,263
• number of people who died from the virus: 32,186

Between the impact of hearing about the virus and Sunny's surgery, I would say both are affecting my ability to sleep. I am also keenly aware of the fact that our Foundation's virtual Walk is a month away, and there are real challenges to raising money during this very unstable time in our history. Our issues are not isolated to us, as all non-profits are facing similar problems. 

I am on a quest to find as many of the psychosocial resources I can on cancer and the Coronavirus. The ones below caught my attention today. Despite that Cancer Care is an organization focusing mostly on adult cancers, their resources and supports are definitely applicable to all families and are quite comprehensive (emotional support, financial support, and informational links).

• Coronavirus Resources
• Support Groups
• Coronavirus Guidelines for People Coping with Cancer (Workshop on April 20)

Wednesday, April 15, 2020

Wednesday, April 15, 2020

Tonight's video was taken on April 4, 2009. This was Mattie's 7th and last birthday with us. Mattie celebrated his big day in the hospital. His school counselor brought him this special singing card! Mattie absolutely loved it and played it over and over again. It brought a smile to all of us, and I particularly enjoyed watching Mattie dance to the music in his wheelchair. 


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

• number of people diagnosed with the virus: 634,975
• number of people who died from the virus: 27,940

This week, Peter placed the message below on Facebook in hopes of getting insights and input from fellow childhood cancer advocates. On April 23, a live Facebook presentation will be hosted by the National Institutes of Health on the mental health consequences of the virus on families who have a child with a life threatening illness. I found the responses to Peter's inquiry very interesting. Since the Coronavirus 'stay at home orders' began, I quickly felt that this was very reminiscent of the 15 months Mattie was in cancer treatment. In many ways, how our world is living with the virus is exactly how a childhood cancer family lives every day of their lives. With the same health threat, uncertainty, fears, financial crises, and hopelessness about the future. Peter's posting enabled me to see the entire childhood cancer community feels the way I do. In fact, many of them feel like they have the skills and abilities to manage these stay at home orders, because they have years of experience with their children with cancer. 

Peter's message:

To all my Childhood Cancer Friends, I need your help and input on coping strategies during these unique times...I have been asked by the National Cancer Institute (NCI) and the National Institute of Mental Health (NIMH) to provide input for a Live Facebook Session being held on April 23, that will address Coping Strategies.

The Clinicians want input on what are the most important questions to answer and topics to address, for families affected by cancer or other chronic/serious illnesses during these times. So I am turning to you for help and input.

Please add a Comment below or PM me with one (or more) important questions and topics to address when it comes to Coping Strategies. I need this input by April 16th, at which point I will collect all responses and provide these to the Clinicians at NCI and NIMH

Please note, that I cannot promise that specific questions or topics will be addressed, but I know any input will be highly valued by NCI and NIMH in terms providing insights on what is important. Thank you in advance for your help, stay healthy and be safe!

Some of the advocate responses to Peter's inquiry:

1. There are two situations that I'm seeing quite a bit. One is the guilt of parents who agree with the decision to postpone a hospital visit, but agonize over..... should something happen to their child because of delayed treatment/surgery, how can they live with themselves. The second is more personal as it has affected me as well: PTSD now that the world can look like an oncology ward. We are reliving the nightmare in so many ways. I also think if we could create an infographic of strategies, it would be a very easy to pass the info around in social media & online groups as well as post on websites. 
2. I often wonder about the decision to have to send your children back to school if schools reopen? How can the psychosocial community help with guidance and help parents feel like we are making the best choice but also having documentation to support these kids? PTSD and anxiety are huge concerns. All of us in our family have the feelings of being locked in from the world again. Although it has brought up a better understanding for family and friends who finally realize that being forced into something like social distancing has opened their eyes into our lives.
3. What do you do if a caregiver quits? What happens to the primary caregiver when this respite care is gone? We cannot interview for this caregiver position now, so what do we do?.
4. We have postponed our oncology appointment for having blood work checked for cancer, but, we are off treatment and will try again in June (hopefully). I’m hoping for the best for our daughter and also hoping this doesn’t interfere with any research protocol we’ve been trying to follow.
5. I am worried about depression setting in with the amped up stress, at a time that support systems (in person) and respite have dissolved for families. I think talking frankly about the mounting signs of depression and what can be done ... almost a "if this, then this" crisis map would be such an incredible support for families.
6. What can be used today in terms of telehealth options if you can't get to the oncology office for an appointment? I would imagine they could send a script for the blood work that you could have taken locally. I think we need innovative options for unique times.
7. Maybe a preface could be made about unhealthy coping mechanisms occurring because families are dealing with un-resolvable stress in homes and people need to be healthy and safe despite the current circumstances.  It would provide great assurance to those crumbling under abuse and addiction and the like, suffocating in their homes. It still is such a taboo topic in the childhood cancer community, but the hell some families are living is rooted in the only vices and devices they know, and are dangerous to others in the family. It adds acid to what these families are trying to manage every day. 
8. Finding and engaging with community during physical isolation.  Connecting electronically with people facing similar challenges can be equally beneficial and helpful for both the person seeking support and those who are able to provide it. Community can provide an outlet to share, work through common issues, strategize and find new hope in an incredibly dark and isolating time. I also think having the tools or encouragement to "check-in with self" is incredibly important right now.
9. Please ask how siblings are being supported, informed and included during this time of prohibition from the hospitals. Total family care is TOTAL family care.
10. I have never wished this level of isolation and hypervigilance on anyone. To see it everywhere - your family, your friends, strangers on the streets - is so incredibly sad. I always found some solace when people could share with me simpler problems, when they could remind me of that "normal" life out there. This time around there is no one to call, as no one gets to live a life where the biggest problem is a 3 year old who won't put his toys away. I have found myself yearning for one of those calls.

Tuesday, April 14, 2020

Tuesday, April 14, 2020 -- Mattie died 550 weeks ago today.

Tonight's picture was taken in April of 2009. We took Mattie for a walk in the hospital's rose garden and came across this bank of azaleas. Azaleas are special to me as I always told Mattie they bloomed in celebration of his birthday. 



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

• number of people diagnosed with the virus: 602,989
• number of people who died from the virus: 25,402

Peter and I are busy at trying to figure out the technology to make our Foundation's Walk virtual. It may sound easier to host the Walk virtually, and it is in some ways it is, but there are challenges. First you need technology to make a virtual event possible and run smoothly. Then of course the coronavirus makes it harder to ask for donations and also to get people to focus on issues other than the LARGER one at hand. 


There are many apps for cell phones that enable companies and non-profits to host walks virtually. I think we found the right one today! We want to work on creating a walk challenge in which all our registered walkers can access, through their cell phone, a leader board so that they can see the number of steps and miles they and others have walked toward our cause. The beauty of using such a platform is that everyone throughout the USA can participate in our event and see messages and goals reached in real time. 

We did our usual long walk around the National Mall. We passed the White House. In all my photos you can see few to NO people around. 

Thomas Jefferson memorial. 

The World War II Memorial and Lincoln Memorial in the background.  

The Washington Monument.

Ironically we have walked past the Washington Monument many times. However, we never paid attention to this stone in front of the Monument. The beauty of the city is there are NO crowds of people now. Making it easier to see things we never had the opportunity to see before. Peter is standing next to the Jefferson Stone in front of the Washington Monument. I had Peter pointing in two directions. Behind him is the White House and to his left the National Capitol Building. This stone is a meridian for the District. The Jefferson Stone marks the second prime meridian of the United States [A prime meridian is the line of longitude in a geographic coordinate system defined to be 0°] even though it was never officially recognized, either by presidential proclamation or by a resolution or act of Congress.

Monday, April 13, 2020

Monday, April 13, 2020

Tonight's picture was taken in April of 2009. That day, Peter and I took Mattie to the Washington Mall. Near us were ducks, and I had brought lots of bread for Mattie to feed them. An activity he loved to do. Every time we pass this part of the Mall now, we remember this moment in time. 

Quote of the day: Today's coronavirus update from Johns Hopkins. The map above illustrates coronavirus cases by COUNTY in the USA.

• number of people who have been diagnosed with the virus: 572,597
• number of people who died from the virus: 23,078

Honestly with all that has been going on, Easter was not really on my radar scope last week. Well that was until the end of the week, when I put into context the date and our reality beyond the coronavirus. 

Typically I don't bake because with just Peter and I at home, it isn't conducive to making bigger desserts. But in honor of Easter, we baked a fresh blueberry and sour cream cake. 

Our daily commitment is to go on a long walk. I did not think that was going to happen today given the threat of rain. But we journeyed out after a storm. You can see the Washington Mall looked like a lake. 

However, while walking, another storm came upon us. Literally there were 40mph winds, intense rain, and pollen flying everywhere. I had an umbrella, but that didn't help. I was soaked and the wind blew up so much pollen that I got into a coughing fit. I couldn't catch my breath from so much coughing.  Thankfully I am fine and allergy meds helped tremendously. 

This is the National Mall! Desolate. We may have passed ten people in total along our walk. 

I made this video for my friend Margy today. It is her birthday and typically we celebrate together. But given the coronavirus and Margy's compromised immunity from cancer treatment, only virtual connections are possible. 

Sunday, April 12, 2020

Sunday, April 12, 2020

Tonight's picture was taken on Easter of 2007. That year we went to the US Arboretum. It was an April tradition. As the azaleas bloomed in April, and Mattie knew that I felt that they bloomed in honor of his birthday. Which Mattie loved to hear. We had 7 Easters with Mattie and now 11 without him. 


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

• number of people diagnosed with the virus: 554,226
• number of people who died from the virus: 21,994

Today is my dad's birthday. My dad and Mattie shared a birthday month. Peter and I spoke to my parents today and our conversation brightened the day for all four of us. It keeps us engaged with the world and each other, though we are thousands of miles apart. 

Sunny continues to limp, but he seems to be able to bear more weight on his leg and appears less agitated today. He is allowed five minute walks for two weeks. We do notice at night, pain returns. Thank goodness for pain meds!

After walking Sunny (who moves VERY slowly, which is NOT Sunny's typical speed of operation), Peter and I went on close to a five mile walk. Over the Roosevelt Bridge, around Roosevelt Island, and back into DC over the Key Bridge. 

Signs of spring are alive and well in our garden. Peter suggested about two years ago that we plant perennials. Plants that return each year. So part of our garden are perennials and the rest are annuals (vibrant flowers which have to be planted yearly). 

Usually by now, we have our garden planted. But given the virus, we haven't touched our garden. Yet with that said, the perennials are a bloom!

Years ago, we planted these Cheddar Pinks! They come back yearly before Easter. Our garden reminds us that there is hope and NOT everything is impacted by the coronavirus. 

I love these dianthus. They are almost a Mattie Miracle color. 

Our corral bells! We planted this one last year, and it came back beautifully this year. We had a relatively mild winter, which was appreciated by our plants. 

Saturday, April 11, 2020

Saturday, April 11, 2020

Tonight's picture was taken in April of 2005. Mattie was three years old. That day I took him to the mall to get a picture with the Easter Bunny. This was the only photo we ever took with the Bunny. In fact the only copy I have of this photo is the original one from the mall. So naturally I took a photo of the photo so that I could have an electronic copy. I absolutely love Mattie's smile here! Mattie had a healthy fear of these large story book characters, but there was something about this bunny that made him seem okay and approachable. 





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

• number of people diagnosed with the virus: 522,286
• number of people who died from the virus: 20,283

After meeting Sunny's needs today, we decided to take a long walk. We walked 5.6 miles. We walked over the Key Bridge into Virginia. Walked around Roosevelt Island and then walked over Roosevelt Bridge to get back into the District of Columbia. So we walked in two states. The walking does help manage stress, anxiety, and lots of frustration with being in this virus lock down. 

Roosevelt Island never disappoints. While on the Island we saw several deer. 

Even a Great Blue Heron. It is wonderful to see greenery, birds, deer, and signs of spring. All things unaffected by the virus. Reminding us that there is hope and life won't always be like this. 

While crossing over the Roosevelt Bridge, we were looking at the Potomac River dotted with birds! I am talking hundreds of Cormorants all over the water. A sight we have seen in Florida, but never in DC.  

Friday, April 10, 2020

Friday, April 10, 2020

Tonight's picture was taken around Easter of 2005. That year we took Mattie to Bunnyland, an event held every spring at Butler's Orchard in Maryland. They had an Easter egg hunt for the kids and lots of fun activities (hayrides, pedal tractors, giant slides, and live animals). Mattie loved going to this farm every fall (for pumpkin picking) and spring! I am so happy Peter captured this cute photo of us, right before  Mattie went hunting for Easter eggs. 








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

• number of people diagnosed with the virus: 491,358
• number of people who died from the virus: 18,316

I am quite certain Indie understands that Sunny is not feeling well. She is sticking close. While we are in the living room with Sunny, she is hanging out by the windows. 

This morning, Peter took photos of Sunny's leg and text messaged it to the surgeon. Who was nice enough to give us her mobile number. She instantly responded and feels that Sunny's incision looks good and was pleased with his progress. I have cut down the amount of pain meds Sunny was getting, as the only thing it seemed to be doing was making him stupefied. Not to mention constipated. To address the constipation, she has us giving Sunny Metamucil and pumpkin. Can't say Sunny likes pumpkin. Pumpkin pie... yes, pure pumpkin... no!

This is Sunny's incision. I would say it photographs better than it actually looks. Thankfully I saw progress today with Sunny taking steps and bearing weight on this leg. 

Sunny is dealing with bruising and edema (swelling in which small blood vessels leak fluid into nearby tissues). So his leg needs an ice bag on it periodically throughout the day for 15 minutes at a time, and we also have to do edema massage which is rubbing the leg from the ankle on up using firm, but not painful, pressure to move the excess fluid out of the area. The massaging helps, because when I feel Sunny's leg, it feels like it is filled with a sac of jelly. Rubbing the leg does seem to help get this jelly feeling reabsorbed back into his body. 

 This is the extensive bruising on the back of Sunny's leg (the leg that was operated on).

 We got Sunny up and walking today.   He needs to start doing this for his   physical recovery, to aid his   constipation, and to help get all the   sedation out of his system. His Sunny   spirit seemed to perk up when   outside. But he tires very easily and   after his walk, literally came back   home and slept for several hours. 

Thursday, April 9, 2020

Thursday, April 9, 2020

Tonight's picture was taken on April 4, 2009. Mattie's 7th and last birthday. Mattie celebrated his big day in the hospital's child life playroom. His cancer buddy, Brandon, came to the hospital to spend the day with him. Mattie and Brandon were diagnosed around the same time, but after three months of treatment, Brandon went into remission. Nonetheless, Brandon returned back every couple of weeks to visit Mattie. Which was a big deal, since he lived over an hour away from the hospital. I love this photo as it still speaks to me about the power of friendship. 




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

• number of people diagnosed with the virus: 456,828
• number of people who died from the virus: 16,267

Sunny still remains very lethargic and looks to be in pain. He is on two different pain meds and the doctor's office called to check on him today. She feels he is doing okay, considering he had a big surgery Tuesday night. He is eating and drinking water, but is unable to walk on all fours yet. Typically Sunny wants to take walks, but he clearly knows he isn't up for it. 

We don't leave him for long, as we like to monitor him and make sure he isn't touching his stitches. But we did get outside for about an hour's walk. We would have continued our walk, but it was windy and beginning to rain. The sky in this photo says it all. 

Wind and rain while walking, seemed to capture the ominous world we are living in now. 

This afternoon, I was working in Mattie's room. Check out my colleague! Typically Indie stays with Peter, but today, she stuck close to me. She seems very aware of the fact that something is wrong with Sunny, and this is bothering her. 

Our boy getting some sun and fresh breezes later in the afternoon! Thank goodness for Sunny and Indie. As they keep us to a schedule and engaged with the world. 

A sunset from our living room window.