Izzy’s Rhabdomyosarcoma Pediatric Cancer Journey

Rare! A word I feel describes our 7 year old Izzy to a T! I never thought that word would apply to what we’re currently going through as a family.

In February of 2021 I took our son, Izzy, to the emergency room because he was having severe stomach pains and headaches for several weeks. They performed an ultrasound but he was too swollen in his abdominal area to see anything so they ordered a CT scan. I remember it clear as day. I was sitting in the room waiting for his results patiently thinking it was probably appendicitis when a knock was at the door followed by two female doctors entering and asking me to step outside so we could discuss the results. I thought that was a little strange. She introduced herself as a pediatric oncologist and my heart sank. I knew what that meant. Cancer....

The CT scan showed a tumor about 5cm in size located in Izzy’s abdomen. It was pressing against his right kidney causing it to fail as well. He would need a biopsy to determine what it was but they were 99% sure due to the tumors characteristics that it was a malignant tumor. The problem is his tumor is very complex and required a very skilled surgeon due to his tumor being entangled in major arteries and blood vessels as well as them running directly down the center of the tumor. The oncologist transferred us to Memorial Sloan in NYC where they successfully performed the biopsy as well as placing a port in his upper chest to easily access him for chemotherapy treatments.

A few days after Izzy’s biopsy the surgeon called with the results. Izzy has stage 4 embryonal Rhabdomyosarcoma.  Rhabdomyosarcoma is a rare cancer of the soft muscle tissue. Only 300-500 people are diagnosed with Rhabdomyosarcoma a year. It is a rare and very aggressive cancer. The main origin site is in his abdomen but it has also spread to his lymph nodes and a very small tumor in his right lung. We discussed the treatment options from here and determined it would be a lot easier for many reasons to get treatment close to home which is in New Jersey.

We went back home and met with the oncologist at St Peter’s University Hospital in New Brunswick and started to discuss a course of treatment to beat this cancer. Izzy would first need to go back to Memorial Sloan to have a second surgery to place a kidney stent in his ureta from his kidney to his bladder to relieve the pressure off his right kidney and get it functioning correctly again. This had to be done before starting chemotherapy because it is important to be able to flush fluids properly while getting chemotherapy drugs so they can flush out of your system. We had the kidney surgery on February 27, 2021 and started chemotherapy a week later.

We are currently on week 9 of 67 weeks of chemotherapy and Izzy has been handling it quite well despite also being on the Autism Spectrum. He has not been back to school since February of 2021 and he is missing his friends and teachers there so much. He is too sick and weak most days to get out of bed but he does have his good days. He is being so brave. We are all so proud of him! Izzy has 4 brothers and a sister to cheer him on at home as well as mommy and daddy.

I made this Gofund me for our family because I have been getting many people asking where they can donate money for Izzy and our family needs. All funds raised will go to helping Izzy with his wants and needs during this difficult time as well as any medical costs and travel expenses he needs for treatment.  Izzy’s father is a truck driver and works long hours so we are also hoping to reduce his time at work an hour or two each day so he can be home more during this stressful time and to get quality time with family. Thank you all so much for all the words of encouragement and prayers!