Kids know so much more than we know
There was a little seven year old boy named Kyle. He came to the hospital in October of last year. As soon as you met him you knew he was one of those kids who smiled inside and it caused you to smile. Kyle had this magnetic, amazing personality. The bond he had with his parents just stuck to everyone who encountered them. He came to our hospital from another hospital for further treatment and they thought it was a very curable disease, but as the months progressed things deteriorated and his disease spread.
He had to spend more time at the hospital and as the months went by, the family became such a part of our unit. The family was amazing and always used humor to cope with things. They just connected with everybody. His parents were so honest with him and he was just so wise beyond his years. He was very in tune with his body and his feelings. Here are some stories that explain how Kyle was:
After a few months of being in the hospital, the staff was watching a video of him playing basketball. Even though he was really sick at the time he was really motivated to play sports. The staff watched him make the winning basket in the game and it was a really poignant moment in the basketball game. The staff clapped for him and told him what a great job he did. He turned around and said “Thanks, but really, my dad taught me everything I know.” He was one of the kids who was so amazing.
As it got closer to the end he was so strong and so brave and there were so many things he wanted to accomplish. He was a huge Red Sox fan. He was able to go to a couple games. They were actually able to fly him down to spring training and he threw a pitch out there. Even though he was so weak, he was just so determined and so courageous.
The other thing that was so amazing was his syringe painting. One day his dad had this idea to do this paining on a canvas board. He would squirt the syringe and make these beautiful abstract paintings. He wanted to make one for every single person that was important to him in his life. He probably made about 60 of them and he gave them to everybody who was important in his life. It was such an amazing gift. For staff at least, in his last few days, he was calling each of us into his room so that he could give us these beautiful pictures. He picked out the colors he wanted for people and he signed them “Love, Kyle” and put the year on all of them and so everybody had this really amazing memory.
He turned 8 before he passed way. He was amazing. He left his mark in all these little places. I think all throughout his stay his parents tried to make things as normal as possible. When it was his birthday they had a normal kid’s birthday party. They had all their friends come over and they had little games and activities. That is what they did. They were just an amazing, amazing family. He had a little sister Abby, who was four, who was very much a part of everything they did.
Kyle and other kids I’ve worked with have taught me that kids know so much more than we know or than we want to know during their time with us. I think picking up on that and pushing the limits in terms of creativity and outlets that you can give them provide for them is important. Personally, I think of Kyle’s family every single day. I pray for them. They are always on my mind and they forever will be. I look at that picture Kyle made for me that I have hanging in my little hallway and it brings a smile to my face. You would think “Oh, that is so sad” but no, it is this colorful, beautiful representation of who Kyle was.
Sara Mastrofranseco, Child Life Specialist
This is what I’ve been dealt
What I’ve learned the most about death and difficult situations is the strength of the family. Every family is different. Every family has their own strengths. It is unbelievable how families can get through what they get through every day.
I ask some families sometimes “How do you do it?” and they say “I do it because I have to. This is what I’ve been dealt.” They do it really well. People who don’t work in the hospital environment ask me “How do you do it” and I say “The families and the kids get me through it.”
When you see the two year old playing marching band in the playroom that’s the memory you will have of him and that’s what brings you to the next patient. Even if you have a difficult situation with the family, what you learned as a professional from that interaction helps you with the next one. Every family teaches you something different. I’ve learned tremendous amounts from every family I’ve worked with.
Heather Bastardi, RN, Nurse
Your sadness is minuscule to that of the family
I think that I tend to start grieving a little earlier than most families do. That’s because I can sort of see what’s going to happen earlier than the families can having had medical experience. I can be sad, and be sad around those issues at that time as opposed to later on. I think there is an advantage in that you sort of work through some of your sadness from it and you can be more available to the family at times when they become sad. Not that you’re not sad then too, but you’ve already had the opportunity to have the abandon all reason sadness that one can get. You get the opportunity to be done with that and be more in the moment with them than in the moment with you. That’s a very helpful thing for me to do.
I think that one has to always remember that no matter how sad this feels, your sadness is minuscule to that of the family. We care about our families, we adore them. I think it’s important for us to remember that and to remember that as sad as we are, the sadness needs to be through them.
Halcombe Grier MD, Pediatric Oncologist
My role was to support the family
I thought about one of the first kids who I worked with who died. She had a very rare type of cancer, so she and her family moved to the United States for the year while she received her treatment, and sadly they were here through her death. She was here for about one year, and I met her probably about three months after she was diagnosed. I was new to this work. I had a lot of innocence, and in some ways I think that innocence was good, because even though I knew that Catalina might die, I really hoped that it wouldn’t be, and that innocence helped me to support them in ways that were very useful and helpful.
The experience of her death affected my practice. One of the ways that it affected my practice was that the days that she was dying, we all knew she was dying, and I had talked with her family. I had gone in and was talking with her, and she had just gotten back from her Make-A-Wish trip. We were talking about her Make-A-Wish trip, and I was so sad. I was just really really grieving the fact that she wasn’t going to survive. I had said goodbye to her at that point and I had gone home.
At around 1 a.m. later that night, one of the nurses, who’s a tremendous healer, called and said, “You know, we’d like you to come in, her family is with her, and she’s dying, and we’d really like you to be here to support her and to support us.” And I didn’t want to go. I really felt just sad and overwhelmed, so I thought “I just want to stay home and cry; I don’t want to go in.” This nurse really insisted that I come and it was so good that she did, because I really learned that my role was not only to support the family through this time of great difficulty and unimaginable loss, but also to support the staff.
The staff needed me there as much as the family wanted me to be there too, so that was a huge learning piece for me about my role with the family as well as with the team. Personally, it affected me. I just felt very, very sad, and also very grateful to have had the chance to journey with them through this experience.
Laura Basili PhD, Clinical Psychologist
This is not fiction
I cry with families and other staff members. I definitely have seen them do the same. It shows families that we are human, that they have touched us, and that we care about them and their child. These are real situations. This is not just fiction. We are really living it.
Rachel Tunick PhD, Clinical Psychologist
Men weren’t supposed to sob about these things
One of my first experiences with a dying patient happened when I was an intern in pediatrics. When I was on call, the child got very ill and died suddenly. I had not been prepared for it. I remember calling my Attending at the time to let him know that this child had died and I was just sobbing myself on the phone for ten minutes. He must have thought “What have I got myself into?” In the 1970’s, you weren’t supposed to sob about these things and certainly men weren’t supposed to sob about these things.
It was an important moment for me in that it redoubled my desire to understand and to help people through the dying process. As time went on, that extended out to a desire to help people in the bereavement process that follows the dying process. We’ve worked very hard with the pediatric oncology group to establish a bereavement program that does provide help for families whose children have died and also for our own personnel who are taking care of the families around the death of their children. It strengthened my desire to make sure that people knew how to help dying children better and the whole growth of palliative care and the PACT team that exists here now.
Halcombe Grier MD, Pediatric Oncologist