Friday, April 24, 2015


Yesterday I found myself at CU in front of a full classroom of medical students in their second year. In medical school, you will have a total of two hours on the topic "how to deliver bad news". One of my favorite attending doctors from the PICU at Children's started off by telling the students her experiences of delivering bad news, something being an integral part of her job. She did a phenomenal job, and it was refreshing to hear her perspective and how she guided the students on specific word choices to use. It all boiled down to honesty and compassion.

I went second. Nine years with Jacob have put us in the seat of receiving bad news many times. I shared times when things went really well and times when things didn't go so well. I had to travel back in time to Jacob's toughest year at age three. He battled pneumonia, pseudomonas and sepsis. A few months later, he battled status epilepticus followed by a bad case of pneumonia. Not even a medicine induced coma could make Jacob's seizures completely stop. There were many difficult loaded conversations and questions. Quality of life and end of life care were common terms around Jacob. To this day, I will never forget Dr. E's words. "I can't predict the future". In the middle of her guiding us through decisions no parents want to make for their child, she also acknowledged that she didn't know everything and she didn't know what the future would hold for Jacob. That gave me both hope and trust in her. She also made it clear that she will be by our side every step of the way, and she sure has kept her promise.

I also got to talk about Sarah, and how it is to receive bad news as a child. One of our stories that always touches the students' hearts is the time when Jacob was in the hospital for 60 days straight. We didn't know if we would be able to bring Jacob home again. It was one day at a time. It was during respiratory season, so no children including siblings could visit the hospital. We tried to have Sarah Skype with Jacob, but she wasn't really sure she saw her brother on the computer screen. I don't remember exactly how we found out that Sarah thought Jacob had died, and we simply didn't tell her. When we got this realization, we immediately talked to the PICU team to let Sarah visit with her brother. The PICU team made the exception possible. It was so important for Sarah to see her brother for herself and realize he was still with us, just very sick.

Last night, I told my girl the story from the Child Life Therapist in the Oncology department who followed my presentation. Today the medical team told this 10 year old girl she will go home on hospice after fighting cancer for five long years. Her parents and her 13 years old sister have known it for quite a while now. The 13 years old sister has no idea what to do when her sister comes home. Her parents have told her to not be sad around her sister, and pretend as if nothing has changed. At the same time as the sister is thinking about how she is going to not show her dying sister her feelings, she is also needing support from the child life therapist with her hair. Her anxiety has led to her pulling out big chunks of hair. She's still 13, and wants to look good when she goes to school hiding her grief and her bold spots of hair.  

It is not an easy class to participate in. I share stories from my heart, and it brings up many painful memories. To listen to the stories of the child life therapist and PICU attending bring tears to my eyes every single time. They always hit close to home. At the same time, it makes me thinking that maybe, maybe I make a little difference in a few med students' lives. And in a strange way, this class also fuels me. That really good feeling of having real conversations, even if they are about delivering bad news.

Have a great weekend everyone, Maria.

1 comment:

  1. Hi Maria!! I just found your blog and absolutely love it. I work with a little girl in Charlotte, NC who also has mito and have actively become involved in spreading awareness and fundraising for this disease. I want to learn as much as possible and know as many mito warrior stories because everyone is different and this disease is perplexing. I want to be the best caretaker possible for Lila. I was wondering if you would mind emailing me privately so I could ask a few questions. hope to hear from you soon!