Our Pediatric Oncology Superhero

A neuroblastoma diagnosis was devastating for our family. Diagnosis and staging in Orlando, Florida. Relocating our family to Boston, Massachusetts, for frontline treatment at Boston Children’s Hospital and Jimmy Fund Clinic. Then onto an experimental trial out of Grand Rapids, Michigan, and maintenance treatment at Connecticut Children’s Hospital. Currently, our daughter Malia Jusczyk is a part of the survivor’s program in Boston.

We have met numerous doctors and nurses through our more than four-year journey. The stress level of our family has been at red alert in and outside of the hospital, wondering if Malia would make it through the other side of the very dark tunnel called neuroblastoma. Through all of that darkness, there has been one person who shined a light on Malia’s treatment and helped us through: Melissa Goddard.

We have had nurses whom we have asked to leave the room and not come back. Nurses who have contaminated her lines, have missed medications and have forced medications into our daughter without any compassion — and, worst of all, given multiple IV sticks, missing veins and poking and prodding without any concern for her. Malia is now dealing with post-traumatic stress syndrome through the help of professional psychologists, due to this trauma over all the years.

The stress is real. As I write this, my blood pressure rises knowing that I will have to pin my daughter’s legs in between mine and hug her similar to a straightjacket to keep her from kicking and punching during these follow-up appointments. We promise her if she does her poke once, they will not have to do it again. More often than not, she will ask, “Why did you lie to me?” Yes, they will forget a vile of blood. Every time my wife and I take her to an appointment, a part of us dies inside. Our daughter saying those words, and also, “Why do you let everyone hurt me all the time?” rips my heart out, and our tolerance becomes lower and our frustration increases.

The one shining star in all of this depression has been Melissa. Instead of rushing and telling Malia what to do, she included her and let Malia make decisions about her treatment. She would allow her to put lidocaine on both arms and to use heat packs, and asked Malia which vein looked best. She would also let Malia decide when she was ready for a poke. No rush, no agenda, just when Malia was ready. No tears, no stress, no tension. Melissa made it all look so easy. We have actually asked if we could transfer Malia’s treatment back to Hartford Children’s, but we cannot due to the trial we are on and our insurance not allowing it.

We miss Melissa, and we hope that in the littlest way we can honor her with this essay.