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:
- 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.
- 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.
- 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?.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
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