This is our wonderful little boy, Jude.
He was born in February 2021 with a condition called ACC (Agenesis of the Corpus Callosum) which has caused him to have a global development delay. Despite this, Jude had been progressing well with his OT, PT & SLT therapies. He was also happily attending creche.
Last October, after attending an appointment with our Paediatrician, the left side of Jude’s jaw, near his ear, swelled up. We took him to Edoc that evening. On examination the GP felt it might be a blocked saliva gland or infected lymph node. Antibiotics were prescribed and we were to follow up with our GP in a couple of days. The swelling reduced, though the lump remained. The GP had no concerns and said to continue with the antibiotics. After two weeks the lump was still present.
We decided to bring him back to the GP where we were then referred for an ultrasound for further investigation. The ultrasound was on November 20th, and this is the day our world turned upside down.
The radiologist informed us, that the lump appeared to be a tumour. Worrisome days followed with CT scans, MRIs, and a biopsy.
The results of these tests confirmed the worst, our beautiful innocent boy, Jude had Rhabdomyosarcoma.
We were devastated, our little warrior had endured so many challenges and obstacles already, and now he faced a tough battle with cancer.
We met with our consultant, where we were briefed on Jude’s treatment plan, 9 cycles of chemotherapy, 6 weeks of Proton Therapy in Germany or Manchester and 6-9 months of maintenance chemotherapy.
He started chemo on December 11th. Thankfully, he has been doing so well, smiling, and entertaining the nurses in St John’s ward. Like any parent going through chemo with your child, you take one day at a time and don’t look too far ahead. However, at the back of our minds, we were anxious as to when & where Jude would get his Proton Therapy. Going abroad with Jude for 6 weeks with his additional day to day equipment is logistically challenging. In March, the team advised us that Manchester had accepted Jude’s case and we would need to go for an initial assessment ASAP.
We had been advised that The Gavin Glynn Foundation would be able to help us. That evening John Glynn called, and it was like the weight of the world lifted off our shoulders. We explained to John that Jude wasn’t your typical 3-year-old and that when going to Manchester we would need the equipment Jude uses day to day and we would like to travel by ferry. John said no problem and within 24 hours, everything was ready to go.
What John and Jayne have done for our family and all the other families is nothing short of inspirational. We will be forever indebted to The Gavin Glynn Foundation for the kindness and help they have shown us and all the other families in our position.
We are currently in Manchester and Jude is in his second week of his 6-week schedule.
Jude is our little warrior; he gets through every obstacle that is thrown his way with a smile and giggle. He has continued to progress in his development and not let cancer slow him down.
