“In November of 2014, I noticed my 8 year old son Robert, had a swollen lymph node of the side of his neck. He felt fine and had no other symptoms, yet this swollen lymph node was large and didn’t go away. I was refused appointments with his pediatrician, who insisted I was overreacting, despite my reports about the persistent lymph node.
I am eternally grateful to my daughter’s pediatrician (who is now also my son’s) for his willingness to examine him and order labs. We were immediately sent to Doernbecher for a bone marrow biopsy. Two days before Thanksgiving 2014, Robert was diagnosed with high risk T-cell ALL (leukemia).
Robert’s 3.5 year chemotherapy treatment began the day before Thanksgiving. Our first meal was Thanksgiving dinner at the hospital. I had to leave to go back home to Eugene for a few hours and felt awful that it was Thanksgiving and my husband and son were stuck in the hospital.
My husband texted to tell me about the wonderful turkey dinner that Candlelighters brought to their hospital room. For the next month, we stayed at the Ronald McDonald house. Stressed about the medical bills, we were fortunate to receive emergency fund assistance from Candlelighters. They helped with our cars breaking down from the commute to Portland, and paid a portion of our housing expenses when we were unable to. The first year and a half of intensive treatment was the hardest. Robert had horrible jaw pain and mouth sores, experienced peripheral neuropathy, and would often trip and fall. He lost so much weight he shared clothes with his sister who was half his age. He experienced several crashes in his blood counts due to infection, illness or too high of a dosage of chemo meds. We had many unexpected hospital stays on top of his regular treatments.
Our son was very self conscious about losing his hair . It was not until our first Candlelighters activity, when he saw many other children without hair, that he finally removed his hat. This was a monumental day for him and our family. He completed his treatments in May of 2018 and had his port removed in August 2018. Now, we do regular checkups, physicals and labs each month as a precaution especially since he is high risk for relapse and secondary cancers. So far, he is doing terrific physically.
Robert loves video games, Legos, swimming, drawing and riding his bike. He is looking forward to the 7th grade and our (reluctant) agreement to allow him to ride his bike to school this year! Robert’s dad, Robert Simpson Sr. is the epitome of the nerdy dad with the corny dad jokes, and he works hard to support the family. Mom, Sydney Wight, was on the path to becoming a speech pathologist, but pediatric cancer had a different path in store. She dedicates hours per week to childcare, volunteers at her daughter’s elementary school and is always willing to assist Candlelighters. At nine, Samantha is the self described “tough and strong girl,” and Delilah, 8, the little princess, is polar opposite of her older sister.
I think its important for Candlelighters families and the community to understand the need families have for support when they have a child diagnosed with cancer. More often than not, radiation and chemotherapy treatment doesn’t necessarily mean the end of the journey. Connecting families that are in the same situation creates a support system that cannot be found within friendships or even extended families.
We are beyond grateful for the assistance, the activities and the support Candlelighters has provided our family during these tough years. My kids count down to months and days until Family Camp and I love to help volunteer for monthly activities and Family Camp. It’s been such a blessing to be part of the club no one want to be in, aka the cancer club. While I still wish this never happened to us, I am so thankful for the blessings and life long friendships that my family has experienced through this journey. “