Friday, March 16, 2018

Friday, March 16, 2018

Tonight's picture was taken in March of 2003. Mattie was 11 months old and we took him to California because I had a conference to attend in Anaheim. That was Mattie's first plane trip and not a short one going across the country. Mattie was for the most part a good traveler. However, the challenging part was entertaining him for a five hour long flight because Mattie was NOT a napper. This photo was taken at the LA Zoo. It features Mattie's favorite form of transport.... in a backpack on Peter's back! 


Quote of the day: I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do. ~ Edward Everett Hale


Out of the blue today, I received an email from a social worker in Pennsylvania. We do not know each other, but apparently she read one of the chapters we wrote in a text book entitled, Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care, and it compelled her to write to us. She said..................

It’s the end of my second week of work here at Penn State Children’s Hospital in a newly created position, charged first with the development of a parent to parent mentoring program.

In my first two weeks, I’ve taken in a lot of information and absorbed numerous faces, names and roles. As the work week is ending and I am organizing my experience, I opened a copy of ‘Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care.’ Scanning the table of contents, I was drawn to the chapter that you co-wrote.

Reading it and the clear distillation of your experience of parents was a gift. In fact, I can imagine reading it as a touchstone reminder throughout the coming months in my new role.  So this email is just a short note of my appreciation.

Perhaps one day our paths will cross.

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I was very honored to receive this email. When one authors a chapter of a textbook, you really have no idea whether your chapter will be of interest to others or even read. However, when I went onto Springer's (the publisher) page today, I noticed that our chapter has been downloaded 664 times. 

But more importantly this chapter is helping clinicians understand a parent's perspective and why psychosocial care is vital throughout the entire cancer journey. Not just at diagnosis. I remember working on this chapter a year or so ago, and it wasn't the hardest one I have written so far, but it had its own challenges. I really wanted to convey Mattie's battle and the lessons we learned from him, and how we are trying to use this information to help others. Given today's email I feel confident we impacted at least one person! 

Below is an excerpt from our chapter entitled, Parents’ Perspective on the Role of Psychosocial Care in Pediatric Oncology............................


Hope, as we knew it, died the day we learned Mattie’s cancer metastasized, when all treatment options were exhausted, and the conversation turned to "making him comfortable." Mattie's physicians never used the word death or dying with us. It was Mattie's nurses who were very direct and told us that Mattie was dying. Once this reality was disclosed, his physicians began talking to us about Do Not Resuscitate orders and other directives. Perhaps the medical team was so invested in saving Mattie's life, facing his death and accepting the limits of medicine were exceptionally challenging to address with us directly. When Mattie died we not only lost our son, our only child, but all that came with our roles as a parent such as the prospect of a wonderful life watching Mattie grow and flourish, holidays and making our own traditions and memories, and the new adventures and rewarding experiences that come with raising a child and being a parent. Although subtle at first, new types of losses continued after Mattie's death. The house became more quiet than a place of worship, summer vacations were no longer child friendly, there were no graduations to look forward to, or weekend children's birthday parties, and holidays did not seem as festive anymore. With the death of our only child, we lost our purpose and direction in life, we lost our social circle, as this was largely comprised of parents of Mattie's friends, we had no more parental milestones or "firsts" to look forward to, and no more chances to see the world through our child's eyes.

We came to the hospital as three and on the day Mattie died, we left as two. That was a profound loss, which was compounded by the fact that we also had to say goodbye to our daily support network at the hospital, a network who had been with us through a 14-month cancer journey. Leaving the hospital and trying to re-integrate back into the world was and continues to be hard for both of us, especially for Mattie’s mom, who has not returned to her previous professional role. In the first month after Mattie's death, friends told her she needed counseling, they wanted her "fixed" so she could go back to being the person she was. So Vicki went to talk with Mattie's social worker. The advice she received remains with her always and has carried her forward. The advice was, "who is the counseling for, you or for your friends?" Though well intentioned, friends and even some family members are not always sure how to help grieving parents and in the process can make one feel like they are not grieving and coping the "right" way. Psychosocial providers need to remind parents there is no right way to grieve. There is no timeline, there are no quick fixes, and importantly, parents need to be prepared with this information before being discharged from the care of the psychosocial team.

For some parents, advocacy can be an antidote to overwhelming helplessness or grief. Yet, for the grieving parent, there can also be loneliness with that experience. When Mattie died we also discovered that we no longer fit into the cancer world, since we did not have a child fighting for a cure or one who was in survivorship mode. This has left us in a very precarious position, as we are still trying to figure out our place in the world. We may look childless to most people now, but the fact of the matter is in our hearts we will always be parents and we were also parents to a child who had cancer. As providers of psychosocial care, you must remember the importance of the role you play and the support you deliver as this will help parents in their new reality of living a life without their child. 

Abstract of the chapter can be found at:
https://link.springer.com/chapter/10.1007%2F978-3-319-21374-3_22