When a child dies

Article

It is not supposed to be. No mother is supposed to outlive her child. It seems that the planet is off its axis when this happens. How can it be? And yet it is. Last fall the CURE staff learned that Delaney LaForest had entered hospice at her home in Indiana. Delaney is a remarkable child. Diagnosed at 6 with Ewings sarcoma in the eye orbit and sinuses, she had received massive radiation to keep her alive. We met Delaney, then 13, at the Extraordinary Healers Award at the Oncology Nursing Society Meeting in May, 2009. Delaney's mom Renée wrote the winning essay about Delaney's oncology nurse, Chrissy Wilson. The San Antonio event was a break for Renée, sister Emilie and brother Josh, and we were thrilled to provide it. This family had been through a lot.Then cancer came calling again. Delaney complained in April, 2010 of a sinus infection and, when it wouldn't go away, Renée took her for scans. But she told me that Delaney already knew the cancer was back. This time it was a sarcoma in the nerves, one that is recognized as induced by radiation. The family was devastated, but Renée says that she wouldn't have done anything differently because the radiation and chemotherapy drugs saved Delaney's life and gave her eight years she would not have had otherwise. Delaney entered hospice in fall of 2010.As she has moved toward the end, Renée says Delaney remained the very special child we had all come to know with a personality much older and bigger than her years. Right now the goal is for her to live to March 13 and Delaney's 15th birthday. But it will be close. The reason I wanted to write about this is to share with you one child's view of death that I hope will touch you as it did me. In her Caring Bridge note this week, Renée told us that Emilie, who will be a senior, was having a hard time one night last week and was upset with her mother when she went upstairs to bed. I'll let Renée tell you the rest.When I finally went to bed around midnight, I was shocked to hear whispering in my room... Delaney in her spot, with Emilie next to her. The sweetest voice I've ever heard saying ... "Emi, it's ok... don't be sad... I'm going to a better place where I won't be sick and hurt anymore. I'll go and prepare a place for you that is beautiful so you can be with me and grandpa one day."Renée said the two girls spent some more time together saying goodbye. It doesn't seem fair that children have to die, but maybe it's to teach us about life. I know that's what Delaney has done for me.

Related Videos
For patients with cancer, the ongoing chemotherapy shortage may cause some anxiety as they wonder how they will receive their drugs. However, measuring drugs “down to the minutiae of the milligrams” helped patients receive the drugs they needed, said Alison Tray. Tray is an advanced oncology certified nurse practitioner and current vice president of ambulatory operations at Rutgers Cancer Institute in New Jersey.  If patients are concerned about getting their cancer drugs, Tray noted that having “an open conversation” between patients and providers is key.  “As a provider and a nurse myself, having that conversation, that reassurance and sharing the information is a two-way conversation,” she said. “So just knowing that we're taking care of you, we're going to make sure that you receive the care that you need is the key takeaway.” In June 2023, many patients were unable to receive certain chemotherapy drugs, such as carboplatin and cisplatin because of an ongoing shortage. By October 2023, experts saw an improvement, although the “ongoing crisis” remained.  READ MORE: Patients With Lung Cancer Face Unmet Needs During Drug Shortages “We’re really proud of the work that we could do and achieve that through a critical drug shortage,” Tray said. “None of our patients missed a dose of chemotherapy and we were able to provide that for them.” Tray sat down with CURE® during the 49th Annual Oncology Nursing Society Annual Congress to discuss the ongoing chemo shortage and how patients and care teams approached these challenges. Transcript: Particularly at Hartford HealthCare, when we established this infrastructure, our goal was to make sure that every patient would get the treatment that they need and require, utilizing the data that we have from ASCO guidelines to ensure that we're getting the optimal high-quality standard of care in a timely fashion that we didn't have to delay therapies. So, we were able to do that by going down to the minutiae of the milligrams on hand, particularly when we had a lot of critical drug shortages. So it was really creating that process to really ensure that every patient would get the treatment that they needed. For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.
Yuliya P.L Linhares, MD, an expert on CLL
Yuliya P.L Linhares, MD, and Josie Montegaard, MSN, AGPCNP-BC, experts on CLL
Image of a man with a beard.
Image of a man with gray facial hair and a navy blue suit with a light orange tie.
Image of a woman with black hair.
Related Content