Liam (6) from Meath, recently had his wish to visit Legoland, Windsor granted. Liam and his family enjoyed their three-night stay at The Legoland Castle Hotel, leaving plenty of time to visit the park and enjoy all the rides. Liam's mum told us,"Liam did not stop smiling all weekend and made sure to spend every bit of his money on Lego!"
Liam's Dad Derek told us about their journey - "Nothing could prepare us for the shock of Liam’s leukaemia diagnosis. We had just moved into our home 6 months previously and Liam’s brother Oscar was only two months old. We were busy but 'good busy'. Liam had started to feel tired more often than he should have and had developed swellings on the side of his neck. Initially, we thought this might me an infection as it was an occupational hazard of going to crèche. Any bug that made it into the crèche had a habit of doing the rounds! We then brought Liam to the GP, who felt around Liam’s lymph glands and sent him to Crumlin hospital for further tests. At this point we still tried to be optimistic, as it was probably the GP just being cautious in 'ruling anything out'.
Presenting to the ER on a Monday night, we didn’t yet have a diagnosis but we could see the concern on the registrar’s face when reviewing his indicative blood counts. Every number that was low should have been higher and every number that was high should have been lower. We were referred to a general ward for the night while we waited to speak to more doctors in the morning. At this point we knew Leukaemia was a possibility (while still trying to entertain thoughts of less severe but also less likely illnesses). We paced the corridors that night, stopping only to google leukaemia symptoms and not liking what we saw. Paleness, night sweats, low energy... Liam ticked all the boxes. That morning we met 'the team'. We knew something was up when six doctors entered the room to speak to us. Then they introduced themselves as being oncology doctors. We knew. Over the next few minutes, a diagnosis of acute lymphoblastic leukaemia was revealed. The blow was somewhat cushioned by the manner in which Professor Smith let us know. It was very upsetting but we were comforted by the positives such as a high likelihood of recovery and a shorter than expected first hospital stay. It was tough news to get but we faced it together as a family.
Liam arrived in hospital on Monday night, had a diagnosis on Tuesday morning and started chemotherapy on Wednesday. The cliché of 'the chemo is harder than the actual disease' rang true. Due to the nature of the disease, the initial chemotherapy is extremely severe. We saw Liam’s energy levels drop dramatically, his muscles weaken and he got bloated from various fluid infusions and steroids. The loss of muscle definition in his legs meant we usually had to carry him in the early stages of treatment – this made us realise how sick he was, as being carried is the last thing a healthy four year old would want! When we got home, Liam put on a huge amount of weight which was a side effect to the steroid hunger we were told about. The initial high dose of steroids altered his mood dramatically as well but thankfully this was temporary. We purchased a toolbox to use to keep Liam’s new medications – chemotherapy, steroids, codeine, anti-sickness, laxatives etc. The next 7 or 8 months were somewhat of a blur due to the regularity of outpatient visits and short stays. There was chemo to be given, bloods to be taken and dressings to be changed. Three to five visits to hospital per week took its toll on general everyday life but we were motivated by the fact Liam would be better soon. Some months in, we learned how to take weekly blood samples ourselves as well as changing the dressing and this reduced the frequency of hospital visits.
It was a huge milestone to get to the maintenance phase – where chemotherapy is less severe and less frequent. Liam’s hair started to reappear very slowly and the colour reappeared in his cheeks. He started maintenance therapy in May and started Junior Infants with a full head of blonde hair that September – almost a year on from his diagnosis. He still has a year of maintenance therapy to go, but touch wood, it is going well and we hope that it continues that way! When Liam was referred to Make-A-Wish, he was very excited. As a huge Lego fan, it was Legoland all the way!"
