When was your child diagnosed with cancer? What type of cancer diagnosis were they given?
Eliana was diagnosed at 5 months old on December 24th, 2017 with Acute Myeloid Leukemia .
How did their treatment progress? If you can, tell us a bit about their final days and end of life.
Eliana started initial chemo treatment in February 2018, which the cancer didn’t respond to. She almost died from a staph infection. We were able to start palliative care after the cancer came back. She was able to come home and enjoy experiences every baby gets to have. After being home from March through September with no complications, she woke up one day not feeling well and having her eyes cross. After having a scan done, it was found that the cancer had spread to her brain. Within a week of the scan, she passed away. We were given the chance to bring her home under hospice care, and are still so grateful for her medical team who went above and beyond to help us bring her home to die. She passed away in our arms and in no pain on September 17th, at 14 months old.
What did this devastating tragedy feel like for your family? What was early grief like?
There is a missing part in our family. We take peace in knowing what our faith teaches regarding where Eliana is, but it still doesn’t take the pain away. There were times where we had no words to express how we felt, or how we could move on in our lives without Eliana. Adrian and I are grateful to have each other to share the burden and cry together. Thankfully, we had a very good support system that checked in with us and reached out through the first year. We still have good connections with those individuals, and they help keep Eliana’s memory alive.
What helps you in your grief now?
Our faith has been integral during the journey we went through with Eliana, as much as after her passing. Adrian and I talk about her and tell our friends and family to not be afraid to share their memories with us. Counseling continues to give me a safe place to process all we went through. Running is another outlet for me to take care of myself and let out the sadness in a positive way.
If you have other children, how did they handle the whole experience? If it has been over a year, how are they now?
No other children, at the time. We have been blessed with another child since Eliana’s passing, though.
What made your child with cancer unique?
So many people say that she was a bright light in this world. Our pastor told us stories of parishioners that came back to the church because of her presence, as well as what she was going through. There was a sense of peace and joy when being with her. She loved life, and did not let her cancer stop her from exploring the world and enjoying all things. In her 14 months, she experienced more than what many get to do in a lifetime.
What were some of your child’s favorite things to do? Did they have heroes, sources of comfort & joy?
Eliana loved to snuggle, eat ice cream, tubby time, visit friends and family, cuddle with Mr. Monkey, read, go to the library, watch the fish in her fish tank, dance, eat bananas or pancakes, and play with her little people toys.
What is the one thing you wish you could tell everyone about childhood cancer?
That more research needs to happen for infant (and childhood) cancer cases.
What is your favorite memory or the most positive outcome of attending a Rett’s Roost retreat?
Knowing that we were not alone in our grief- other families can relate to the journey we went through, and continue on.
What other organizations, if any, did you utilize during and/or after treatment?
Joy’s Network (NH)
Partners in Health
Childhood Cancer Lifeline (NH)
Aubrielle’s Hope (NH)