By his Mam Louise
In March 2019, my son Jimmie, who was three at the time, was diagnosed with a 7cm Rhabdomyosarcoma in his left cheek. For the previous six months, we’d been banging our heads against a wall trying to figure out what was going on with him.
From the Halloween, he was just off form. He was more tired, waking up 20 times a night, complained of a pain in his tongue, which is an unusual complaint for a 3-year-old. We’d been to our GP and to Temple Street and been given antibiotics and various infections or viruses mentioned. We thought maybe it was night terrors, or the fact that our family dog had died and maybe Jimmie was traumatised from that.
We brought him to a paediatric dentist because he had some slight swelling in his mouth, but nothing that raised alarm bells for us, we thought it could be a blocked saliva duct. She did see something and referred us to an ENT (ear, nose and throat) specialist so at least that was something, we felt we were on the right path at last. Jimmie wouldn’t play ball for the ENT so he couldn’t check him out properly and said he’d have to do a scan under general anaesthetic so we were booked back in to do that a week or so later.
In the meantime, we had a wedding in Belfast. I really didn’t want to go, I was 16 weeks pregnant and we were exhausted from Jimmie waking so much at night. But my Mam convinced me to go and said, if nothing else, we’d get a proper night’s sleep.
While we were away, my Mam took Jimmy to Crumlin because she was so concerned about him, but they were sent home again. Two days later, I was back in work after the wedding and rang my mother-in-law, who was minding Jimmie, to see how he was. It was 1pm and he was still in bed, which is just not normal for a child, so I asked her to bring him over to Crumlin and I’d meet her there. I actually work for Ronald McDonald House so I was able to go over and meet her. We got sent home again but I rang the ENT that we were due to have an appointment with later that week and he put in a call to Crumlin and asked for a scan, so we were called back in for that.
Jimmie had an ultrasound, which showed the tumour and an MRI which gave more detail and we finally had our diagnosis after months of worrying and not knowing. He had to start chemotherapy straight away and unfortunately, he didn’t handle it well at all. He had every side effect going and the first four cycles were really tough, we were in Crumlin pretty much all the time.
We actually had to time the induction of our daughter Phoebe around when Jimmie was due to have chemotherapy, so that my husband could be at the birth and then go and look after Jimmie.
When Phoebe was five days old, we got a call to say we were going to Germany for proton therapy. We had no passport for her so we left her with my Mam and mother-in-law and went over for the 2-day consultation in Essen. Once we knew what the treatment plan was, I phoned John Glynn of the Gavin Glynn Foundation and he looked after everything for us, I didn’t have to worry about anything.
We then had to move to Germany for two months with a newborn. Jimmie did 34 rounds of proton therapy. My husband and I made a judgment call not to do chemo while he was having proton, he was just so sick on the chemo that we felt he wouldn’t get through the treatment. It was a tough call to stop for two months. But we had a ball when we were in Germany. We didn’t have to worry about infection like you do when you’re on chemotherapy so we were able to enjoy ourselves in our little bubble. Jimmie still talks about it, it was a really lovely time.
We were so lucky with family support, there was always somebody helping us with the baby and we were never on our own.
We had another six months of frontline treatment at home in Crumlin and then 12 months of maintenance chemo at home.
Jimmie has had the maximum amount of proton therapy that he can ever have in his life so that’s obviously a fear if he were to relapse. Next week is his 2-year scan and we don’t take that lightly. It’s a big one because the chance of relapse reduces after two years.
He is doing so well and living his best life!