This is Josh our lively, cheeky, fun loving 3 year old. He’s a trickster always running and hiding.He loves playing with his big brother Liam who is 7, superheroes, his toolbox, his beloved bluey teddy and doing the robot dance. Josh was never sick and the only time he visited the GP was for his vaccinations.
All of a sudden on the 21st May 2019 he woke with huge swelling on the side of his neck. He had no other signs that anything else was wrong no temperature and he was in great form. He was treated with antibiotics but the lump didn’t go so we were referred for an ultrasound. After a series of tests including a biopsy and a misdiagnosis, a second biopsy then gave us the heart breaking news our son had a Malignant Rhabdoid tumor.
Our world came crashing down that day. This type of tumor is an extremely rare aggressive tumor with a low survival rate and even more rare in the neck. Our consultant assured us he wouldn’t have taken us on if he didn’t think he could cure him so we put our faith in him to look after our precious boy.
Chemotherapy treatment started immediately in Our Ladies Hospital, Crumlin, with Josh to undertake aggressive rounds of chemo in the hope of reducing to the tumor to a size it could be surgically removed followed by radiotherapy. The chemo has been gruelling and Josh has been so unwell but he gets himself back up again each time with amazing strength says a lot about his character. This type of tumor is often resistant to chemo but we were relieved to hear Josh was 4 rounds into chemo treatment when the tumor had reduced to an operable size, on the 23rd August the very risky surgery took place and 95% of the tumor was removed.
There is still a long road ahead with continued chemo and radiation treatment. The Proton Radiation treatment Josh needs requires us to relocate to Essen in Germany for 6 weeks which has a huge impact on our home life.The move to Germany is happening fast .We were worried about how it would all work but John Glynn took away all those worries by arranging it all for us.It is something we will never forget,when everything falling down around you,to have some be so kind like that is so overwhelming.