What does it mean to have hope, to be hopeful? Each of us have our own very personal ways we might answer such a big question. But, what if you were a child with a cancer or a parent with a child who had cancer? What if you asked that question of a nurse or doctor who treats childhood cancer? Could we possibly expect them to be hopeful? The answers might surprise you and challenge what you may have come to expect about pediatric cancers. Each time I visit our pediatric oncology clinic or inpatient unit, I'm struck by how much hope there is. It's awe inspiring. Before I worked at Johns Hopkins, I couldn't imagine how a child or their family could cope with such an illness. Now, I know several patients -- survivors - they make me smile and give me hope -- not just because I want them to be OK, but because there is so much progress being made. Have we solved all the issues that children with cancer have? No way and sadly, not every child makes it. That's why we have to keep pushing, working hard for them and bringing more hope for tomorrow.
Do you have hope? Tell us why.
Diana Sugg won a Pulitzer Prize for writing the story, “If I Die.” She observed a 12-year-old boy with cancer every day for 25 days. She wrote about R.J. Voigt’s struggles, and his journey with the disease. It’s an extremely real and emotional account of a boy fighting for his life, and the hope his mother is holding onto. I began reading at Part Three of the series.
Part Three begins with R.J. restless and calling out for his mom. R.J. had been fighting for three years, and he was in his last month. His mom didn’t want to leave his side. I have barely gotten into the second paragraph, and I already feel a connection to this family. Not knowing what will happen or when you’re life could end. I’m not a mother, but my aunt died of cancer when I was younger. I didn’t really understand at the time, but now that I’m older I can only imagine what my family, Michele Voigt, and families all over the world feel every day when the end is near for a loved one.
The John Hopkins Children’s Center is trying to “craft a better ending for the children and everyone around them.” Through the Hopkins project, the palliative care group is trying to acknowledge the possibility of death earlier on in the process to better prepare the families. R.J. was one of the children to get attention in this area. Doctors say many children believe they did something to deserve dying, but they don’t want to say anything as to upset their parents.
Child life specialists try to help children do what they want before dying. R.J. wanted to go bowling and go to Ocean City; unfortunately he was too weak to do either. They were able to persuade the producers of “Daddy Day Care,” a movie only in theaters at the time, to send a copy of the movie so he could watch it. On top of that, the hospital made sure R.J. got frequent visits from the people important to him. Many young patients, including R.J., leave presents for the ones left behind. R.J. wrote thank you notes to his family as well as his doctors and nurses. I don’t think I would have the strength to be a nurse at the John Hopkins Children’s Center. I would get attached, and soon they would be gone; left behind by grieving loved ones.
R.J. said he started seeing angels, that they would come into his room. This kind of talk from her son prompted Michele to celebrate Christmas early, R.J.’s favorite holiday. Times like this are especially tough for Michele, and sometimes she had to get out of the room and the hospital in general. She said she felt like a bad mom, but she never gave up. R.J. never got his Christmas.
Many children know when they’re going to die, according to studies. Some want to hold on, and some are ready to let go. Reading about the children in this story makes me feel so weak. They are barely teenagers yet they have such a grasp on life and death. I don’t think I would be that strong. R.J. wanted to go home and die in his own bottom bunk. That was his last wish.
R.J. continued to talk about, and with, the angels. The hospital’s chaplain, Rev. Sal, gave R.J. a statue angel a few days before he died, but R.J. said that the angels didn’t look like the statue. In those last days R.J. couldn’t eat, couldn’t talk, and said his whole body hurt. He kept calling out to his mother, “Mom, help, help!” his mother didn’t know what to do.
Michele thought that when her son’s death comes it would be peaceful. Parents always seem to think their children will be cured or have more time than they do. Because of this thought process many parents are not around when their child passes. Many parents, like Michele, wish they would have held their child in those last moments, instead of being scared they’d hurt them.
R.J., his mother, and the doctors knew the end was near. Counselors were nearby to console the family, Rev. Sal was there, and R.J.’s favorite songs were playing. The swollenness had gone down in his face, and now he was just tired. The hospital had given him an honorary medical degree and a white coat.
The night R.J. passed he was peaceful. His mother put on Amazing Grace and held her son. He was calm. He held on as everyone said their goodbyes, but he was quickly fading. R.J. died at 7:37 a.m. on July 25, 2003, right after his mother had said goodbye. Even though I only read Part Three, this was an emotional and inspiring story about the hope and love between a mother and son. How you have to know when to hold on, and know when to let go.
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