Roy Burger

Roy was a happy, smiling, 14 month old toddler when he was diagnosed with Bilateral Wilms tumors. After going in for an MRI for unrelated reasons it was noted that his blood pressure was extremely high and we later found out it had been overlooked for quite some time. Just a few days later our lives changed forever when we were told our miracle child had cancer. A child who brings joy to everyone he meets, who lights up the room and hasn’t met a person who hasn’t instantly become his friend. Looking back suddenly other symptoms misdiagnosed were clear such as the frequent fussiness and frequent ER visits for fevers and vomiting.

Just a few days after the MRI on November 1st 2022 we met with a nephrologist to find out what was going on with his blood pressure and a few tests and few hours later Roy was being admitted to Upstate Golisano Children’s Hospital with kidney cancer; the tumors taking up nearly all of both kidneys.

While admitted Roy underwent an MRI, CT, ECHO, had his port placed and started his rigorous chemotherapy. Roy had 9 weeks of chemotherapy and on January 31st he had his first partial nephrectomy on the left side. A team of three surgeons worked for 6 hours and removed seven tumors and 14 lymph nodes and luckily were able to save about 60% of his left kidney.

*IMPORTANT UPDATE, June 20, 2024:

Roy recovered well from his first surgery January 31st and had maintenance chemo until his second surgery. Roy’s second partial nephrectomy was on March 14th 2023. While we were confident of his surgeons expertise and ability, due to the location of the largest tumor up against the main vein in his kidney, we were advised it was very possible that he could lose the kidney.

However the surgeons were able to save Roy’s kidney! They described cutting out the tumor at the top of the kidney and as they pulled it out, the largest tumor against that main vein fell out with it. An absolute miracle for our son.

Between both kidneys Roy was considered stage 2 favorable histology. Due to pathology and the nephrogenic rest tissue they treated Roy with a strong chemo combination in hopes of killing off any possible microscopic cancer remaining. Roy did not need radiation.

Roy’s last chemo infusion was June 29th 2023. One August 7th Roy rang the bell for end of treatment NED (No Evidence of Disease), one week before his 2nd birthday.

Roy has been going for x-rays of his lungs and MRIs of his abdomen every three months. He is currently stable NED.

His next set of scans is July 2024, which will be just shy of one year NED for Roy. We are praying for clear scans and continued healing and good health for our sweet boy.

Roy’s kidney health is being monitored and his blood pressure is well controlled with meds. He has some other medical issues we are working on, but overall he is HAPPY AND THRIVING.

This fall Roy will be starting in pre-k and we will continue to work on and overcome all the challenges he has experienced.

We currently are waiting for the official pathology results. On March 14th 2023 Roy is scheduled for the second part where they work on his right kidney and we pray they will be able to save the kidney. While waiting for surgery Roy will continue with chemo. After surgery Roy will have additional treatment based off the staging and pathology results.

“…Thank you for everything your organization is doing for our family and has done for other families like ours. You help to shed a little light on our darkness and bring some much needed hope to our hearts.” ~Mary, Roy’s Mom

(Roy with Mom and Dad, Mary & Jeffrey)