We asked Xander’s mother to write about her child’s experience with rhabdomyosarcoma.
“In May of 2018, we noticed that Xander had an abnormally large (what we thought) testicle. When we saw his pediatrician, we told him he’d not had any fever or pain, so his first thought was that it could have been a torsion, but after a few tests realized it was a mass and immediately scheduled an ultrasound and sent us to a urologist. The urologist confirmed it was a mass and strongly suspected rhabdomyosarcoma. The urologist then sent us for a CT scan and confirmed the following day. We had surgery to remove the mass and his left testicle (since they were both enclosed in a sac) that Friday, June 15th. The following Friday we met with one of Xander’s two oncologists, Dr. Rico, who confirmed the diagnosis and we discussed chemo options. Because there appeared to be a slight spread of his cancer. We were classified as stage 2a and scheduled for his port to be placed and chemo to start the next Friday.
It was a whirlwind of a month to be sure, but I’ve never been more thankful to have doctors that actively sought answers and treatments as quickly as they did. We opted to do 26 weeks of chemo, rather than 43 weeks. It meant more overnight visits at the hospital, but also a lot shorter time doing the chemo itself. We started weekly visits to Tampa General at the beginning of July, and overnight visits every three weeks. He lost all of his hair around his fourth week of chemo. Any slight cold required a trip to the ER if he got a fever of 100.4 or higher – so hand sanitizer and extra cleaning became a regular occurrence. He had to see a pulmonologist and start taking Flovent daily because he would start wheezing and once had an oxygen scare during an ER visit. He became neutropenic, thankfully only once, and required medicine to help boost his white blood cell count.
During the month of August, we spent 24 out of 31 days in the hospital. There were times when it was hard, there were times when he was scared – but mostly he was, and usually is, one of the happiest kids you’ve ever seen. He’s incredibly brave and smart and we are so thankful to be his parents. He’s been through so much in his short life – unrelated to cancer. He was born at 30 weeks because I got preeclampsia and HELLP syndrome and he spent 6 weeks in the NICU. He had to have double hernia surgery at 6 months and then hypospadias surgery at 9-months-old. And he had to wear a helmet for about 6 months around his first birthday due to torticollis. But despite everything, he’s been resilient and brave and we’re so thankful for everything the NPCF has done for us!”