This is Cadoc, 3 years old. He’s always had a bright and sweet personality, quick to smile and laugh, and I called him my sunshine boy. He has an older sister, Margaret (age 9) and older brother Killian (age 6), and well loved and cared for by his papa (Adam), mama (Abigail) and step-dad Lars.
On Halloween 2022, I (Abigail) noticed some strange small spidery veins on Cadoc’s right thigh and, although initially attributed to bruising from a small fall he’d had that day, something seemed odd about it so I thought to keep an eye on it to see if the markings improved or got worse. Cadoc then went away to the UK for a week for holidays, without Mama.
When he returned on a Sunday even, he’d been feeling unwell all week, very fatigued and not eating or drinking much.
Then, when I changed his nappy, I immediately noticed his right leg looked a bit swollen, and the veins were even more noticeable and extended up into his groin area. We immediately tried calling Caredoc and other 24-hr clinics in our area but with nobody answering, we determined to go to the GP immediately in the morning.
Monday, November 8th, we set off to the GP for the earliest appointment they had available. Upon checking out the symptoms and feeling Cadoc’s abdomen, our doctor sent us immediately to A&E. Several hours of tests later with no explanation for his symptoms yet, we were sent for an ultrasound of his lower abdomen and pelvic region, and then after more waiting were informed they had found a tumour.
The next day, Cadoc was transferred to CHI Crumlin, and then a biopsy was done that Friday.
While waiting for the results of the biopsy, it became clear that the tumour was growing very rapidly. Cadoc’s leg and groin swelled up terribly making it impossible for him to walk properly, and he was on the verge of needing a catheter because the tumour was placing so much pressure on his right kidney and pushing all his internal organs out of place, particularly the bladder. He had no appetite and started losing weight rapidly. And, he had tested positive for both COVID and RSV from the initial A&E visit, so our sweet boy was really very sick and unwell.
November 15, a week after we first went to the doctor, Cadoc was officially diagnosed with a rhabdomyosarcoma in his pelvis, and he immediately began chemotherapy. He gave us all quite a scare then, as he experienced a rare reaction of encephalopathy to one of the chemo drugs – ifosfamide – and became unresponsive for several hours until an antidote was given. Thankfully there were no lasting side effects, and since then he’s been able to receive all his chemotherapy without incident with some minor changes.
For the most part, Cadoc’s treatment went fairly straightforward for the next few months, excepting a 10 day hospital stay in January when he got chickenpox that his brother brought home from school. An MRI at the end of February showed the tumor had shrunk dramatically, and the typical next step of treatment would be planning for surgery. However, our consultant told us that the placement of the tumor was too close to certain internal organs, and Cadoc’s case needed to be discussed with a larger panel of doctors to determine the best approach for removing the tumor. A couple weeks later, we got a call informing us that radiation, specifically proton therapy, was the unanimous recommendation by the panel of oncologists, and that we needed to go to Essen, Germany, for 6 weeks of daily treatment.
Getting that call was such a shock at the thought of our family having to be separated for so long, all while being in an unfamiliar place. I’m so thankful that we were referred by the hospital social worker to the Gavin Glynn Foundation who made it possible for our whole family to fly to Germany for Cadoc to start his proton therapy treatment. We are incredibly grateful for the Foundation for covering so much of our travel, housing, and living expenses while in Essen, and for the HSE for covering the costs of this treatment. These past months have been exhausting and full of changes for everyone, but at least we can stay together for these 6 weeks and we can care for Margaret and Killian too as best as possible in between the daily appointments with Cadoc.
Through all of this, Cadoc has remained positive and sunny. He’s been so brave and understanding, even though no child should ever have to experience this.
We are encouraged by the progress of his treatment so far, and stay hopeful for the future even with further chemotherapy and surgery still on the horizon.
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