Cancer…It wasn’t the word Amy Guzman was expecting to hear from her son’s ENT.
Javier, or Javi for short, had been battling bacterial and viral infections, one after another. In early May 2019, he was experiencing particularly swollen lymph nodes. This wasn’t an unusual occurrence for the 4-year-old, but when they continued getting bigger over the course of a week, Amy took him to see the pediatrician.
He tested positive for strep throat and on the way out the doctor told them to bring him back if the swelling didn’t go down with antibiotics. They waited and watched, but the swelling didn’t subside as it always had in the past. As instructed, the Guzmans went back to the pediatrician – the beginning of a journey they didn’t yet know they were about to take.
In search of answers for Javi
The pediatrician ordered blood tests of all kinds, determined to figure out what was going on. Results showed he was anemic with a high erythrocyte sedimentation rate, an indication of inflammation in the body. Still in search of the full picture, the pediatrician referred Javi to his ENT for further evaluation, an ultrasound, a chest x-ray and more bloodwork. The ultrasound and x-ray came back normal, but the bloodwork showed he was still anemic and the ESR had tripled! A biopsy, surgical removal and testing of the largest lymph node, was next and the thought of her baby undergoing an operation left Amy reeling.
The biopsy took place on July 15. Three days of agonizing waiting later, Amy was at work when she received the phone call she’ll never forget.
“When the phone rang, my manager came to the locker room with me, ‘just in case.’ The ENT said the word ‘unfortunately’ and my heart sank. I remember slumping down. I heard the word cancer and the doctor kept talking, but his words just sounded like mumbles in the distance,” said Amy. “Javi’s dad was also at work. I knew I needed to call him and tell him to leave immediately. I dreaded the thought of breaking the news to him. It’s hard to see him cry.”
Diagnosis, treatment and making friends at CHoR
They spent the next long day at CHoR doing more extensive tests and scans to determine staging and help the oncologists develop a treatment plan. It hadn’t even been 24 hours since hearing the word cancer. Overwhelmed and exhausted, Amy stopped to ask the nurse navigator for help.
“He took us under his wing and stayed in contact with us the entire day, answering questions, printing maps and even walking with us to show us how to get to another building. He would randomly show up at our different testing locations to check in on us and make sure we were ok or to see if we needed anything. He selflessly stayed past his shift to make sure we were able to complete every single test,” said Amy. “To this day, I still think back at all he did for us on this first day of our scary new reality.”
The results came the following week and brought even more difficult news. Javi had stage IIIS EBV + Classic Hodgkin’s lymphoma with bulk disease and B symptoms, which means scans revealed cancer in his upper chest and spleen as well and the tumors were significant in size. He would need aggressive chemotherapy treatment in 21-day cycles for about six months. A port was placed in Javi’s chest, allowing access to a central vein for the chemotherapy to be administered. The very next day, he began his first cycle.
Javi came to the hospital for days 1-3 of each cycle, so the doctors and nurses could monitor him closely during chemo infusions. On day 4, he would come to the outpatient clinic to check counts of his red and white blood cells and platelets. If necessary, he would receive blood or platelet transfusions. If white cells were down, he would have to remain isolated as much as possible – not an easy feat with a 4-year-old boy! On day 8, he would return to clinic for updated counts and more chemo. The remaining days were filled with medications at home, along with unplanned ER visits and hospital stays.
Though overwhelming at first, the Guzmans settled into their routine pretty quickly. Javi was even swallowing whole pills by the end of the first week!
Prepared to protect his friends at the hospital
Though most wouldn’t consider the hospital much fun, Javi came to really enjoy his stays. He became fast friends with the nurses and other team members and they always knew they were safe when Javi was there.
“Javi loves uniforms. Don’t call them costumes around him, just a warning,” laughed Amy. “He would ‘patrol’ the halls of the hospital in his police uniform, was always ready with his firefighter gear in case there was a fire on the unit, and just in case the nurses were short staffed one day was prepared to throw on his blue scrubs, eye protection, stethoscope and CHoR name badge.”
One of Javi’s unexpected hospital stays occurred the day of National Night Out. He had been so looking forward to seeing the Hanover police, firefighters with their ladder truck and an ambulance in his neighborhood and was devastated to miss it. As luck would have it, Amy ran into a VCU police officer in the hospital cafeteria the same day and explained what happened. A few hours later, three VCU police officers surprised Javi in his hospital room for National Night In!
In the outpatient clinic, Javi had his favorite nurse for sure. Nurse Dianna even taught him how to fill his own vacutainers, or blood collection tubes, and he got quite good at it.
“Little Javi…He really warmed up quick. He was such a brave boy and did so amazing with his treatments,” said Dianna. “He would always come to clinic dressed up in a uniform. He would ask to wear my stethoscope and lab jacket most days he was here. One day I told mom about kids scrubs and the next time he came to clinic he was completely decked out in his very own ceil blue scrubs.”
He also had his two favorite chemo nurses. He always knew where to find nurse Syd, or “Sydy Biddy” as Javi nick-named him, so they could hang out and he adored Nurse Lauren. On the way home from his last hospital stay he sat back in his car seat quiet and glum. When mom asked what was wrong he said he missed Nurse Lauren and wanted to know if he would ever see her again.
“Javi always arrived on our floor with a big smile on his face! He kept all of the staff laughing with his frequent costume changes and his surprise water gun attacks,” said Lauren. “Generally on a patient’s last chemotherapy admission, the staff surprise them with bubbles and a dance party. When it was Javi’s turn for the party, he ran in the opposite direction because he was going to miss us all so much! Despite having to be admitted to the hospital every couple weeks for his chemotherapy, Javi knew how to make the best of his situation and always kept us smiling.”
On October 18, 2019, the Guzmans finally received some good news – the best news, actually. Javi is in full remission! Now that his active treatment is over, Javi only comes to see Dr. Gowda and his team every three months for checkups, bloodwork and scans.
Enjoying life outside the hospital
When Javi started his treatment and had to stop going to his regular preschool, Amy’s mother came to stay with the family so mom and dad could keep working. He loved spending so much time with Grandma and having adventures together. She also took him to the ASK First STEP Preschool especially for kids undergoing cancer treatment so he could keep learning and socializing.
These days, you’re more likely to find him playing with his big brother, Alex, visiting a police or fire station, or watching for emergency vehicles out the window. He’s anxiously awaiting his Make-a-Wish Day when he’ll get to be a police officer for a day with the Hanover County Sheriff’s Office. He also loves to play baseball in the yard with his dad. He started playing Little League last spring and was looking forward to playing again this year, but it’s been postponed due to coronavirus.
In between practicing his hitting and throwing, eating his favorite ice cream and watermelon, and reading books about baseball and firetrucks, he’s also getting ready for his next big adventure – starting kindergarten in the fall! The brave, inquisitive and intelligent boy has already been through more challenges than many people will in a lifetime, so mom is confident he’ll do great.
“Sometimes when he’s playing, I’ll just watch him and think about all the craziness our entire family went though and how much he’s changed and grown stronger through it all,” said Amy. “Not even one year ago I was carrying a very innocent, very nervous little boy into the hospital and today he seems like such a big kid, even stronger than before.”
As Javi’s one-year “cancerversary” approaches, his family has a lot to celebrate.
“We always used to joke about Javi being a stubborn child. Soon after receiving his diagnosis, I realized God knew he would need this trait on his side to fight childhood cancer,” said Amy.