Patrick
Patrick was a happy little boy who loved all the usual things for a boy of his age – dinosaurs, Lego, and Star Wars when he was diagnosed with Leukemia in December 2019, one week before his third birthday. Lynsey, Patrick’s Mam shares their journey in Children’s Health Ireland at Crumlin.
“I became pregnant with Patrick when I was 41, he was a very lovely, very welcome surprise. I’ve always said to Patrick – when you’re small Santa brings you what you want. But when you’re older Santa brings you what you need. And I’d always ask, ‘Dear Santa please at some point can I have a little boy with blonde hair and blue eyes who is full of mischief and very caring’ and Christmas 2016 that is exactly what Santa brought me!
Patrick was such a sociable little boy, not one bit shy and always so happy, but in July 2019, when he was two and a half and I started to notice a real shift in his behaviour, you’d change his nappy and he’d scream and kick which just wasn’t usual for him. But I just put it down to ‘the terrible two’s’ and thought it would pass. Towards the end of the summer, I thought his mobility started to change, I thought he was running slower but other family members didn’t think so and thought he was just developing at a different pace. Even so I decided I’d try and get a physio assessment for him once he was settled into Montessori – he was due to start that September. By late September he started to get really very tired and very pale – he’d go to Montessori, and he’d be asleep before he even had dinner, often before 5pm! I put it down to starting Montessori and he was always very fair skinned, one of my friends called him ‘Snowflake’. Then one weekend I found blood in his nappy and brought him to D Doc – they put it down to a hard stool.
Then in mid-October he had a strange fall – almost like his leg just gave out from under him. He seemed ok but later woke up streaming in pain, so I took him to the GP who sent us for an X-Ray. The X-Ray didn’t show anything abnormal, so we carried on as usual. He had another fall a few weeks later – similar to the first and again an X-Ray with no damage showing. However, he began limping and having outbursts in Montessori – in talking to the teachers it sounded like his behaviour when he is exhausted. By mid-November I had alarm bells ringing in my head, even though each of the symptoms could be explained away, when put together they were causing me concerns. You see I’d been a care worker for over 17 years and worked in palliative care. I was lying in bed one night, wracking my brains trying to work out what could possibly be wrong with him and suddenly I thought this all points to leukemia, but I pushed that aside – it was too frightening to think of – my little boy couldn’t possibly have leukemia. However, the thought wouldn’t leave me alone – after a week or so passed my unease grew. I made another appointment with the GP who referred us for a third x-ray. So, we went back and to my surprise it was the same practitioner who did our first x-ray, Elaine, and she remembered us! She was surprised to see us back again for the same issue, she did the x-ray and again said there was nothing abnormal. It was then that she looked at me and said ‘but you’re not happy, are you?’ so I told her my concerns and that I felt it was something serious and to do with his hips. She just replied with ‘okay; and went to find out what she could do. She came back with the registrar for the day who happened to be an oncologist from Crumlin. She examined Patrick and took some blood tests and that was the beginning of our journey.
If not for Elaine listening to me that day, we may be in a very different situation today.
The blood tests came back and showed he was very seriously anemic, and so we needed to get him to Crumlin straight away for more tests. I said to Elaine ‘is it leukemia?’ and she said ‘all his blood counts are very low and until they do further tests, we won’t know for sure’. She hugged me then and wished me the very best of luck.
On the 13th of December 2019 almost three years to the day that I had Patrick, we were told he had Leukemia. Dr Andrea Malone and her team came in to tell us and I’ll never forget that moment, it felt like they formed a protective circle around us. Everyone in the room was looking at Dr Malone apart from Patrick who was looking at me so I knew at that moment my reaction would determine how Patrick reacted. So, I just smiled and said “ok, that’s grand” – I felt they were looking at me as if I was mad, but I did that for Patrick. Later he asked me ‘Mama, what’s all this for, what’s going on?’ So, I used one, of his favourite things – Star Wars, to explain it. I told him the Death Star was in his hip and the medicine was all the little X-wing fighters going in to destroy it, he got it straight away.
Our journey through Crumlin was long; we had 6 months of front-line treatment, which consisted of four very intense phases of treatment before moving to maintenance.
Cancer is so heart-breaking. It is relentless and totally goes against everything you’ve ever learnt as a parent. All you want to do is protect your child and do everything you possibly can to make them well and healthy, but this treatment does the opposite. Giving them something that’s going to make them really sick feels so counterintuitive, it’s a roller coaster and you need so much support to get through it.
Almost all of Patrick’s treatment happened during the height of the COVID-19 Pandemic. Only one parent was allowed in the hospital, so it was a very lonely, very intense experience. We became very close with the other parents; we’d only see each other briefly in the kitchen or the corridor and offload to one another – it was comforting as we were all in a similar situation.
You move into the hospital, it becomes home but just because you are there doesn’t mean life stops, it all still has to go on around you. The same functions must happen, but you don’t have access to the facilities and that’s where the Foundation and charities come in, they provide that help and support. I can’t describe to you how vital it is.
Each and every one of the hospital staff were amazing, I’d have great chats with the cleaners and the porters – it was nice to talk to someone non-medical, we got to know them very well.
The medical team were incredible, I was always amazed at the lengths they would go to help Patrick through the treatment, from playing games with him and ‘treating his teddy’ – giving it a wristband and checking it’s vitals – to knowing the latest toys and crazes so they always had something to talk to him about. They became our family, because of COVID they couldn’t see their family and we couldn’t see ours so we kind of became this makeshift family together.
Patrick was 3 years old when he started treatment, the biggest portion of his life so far has been on treatment. Your childhood doesn’t stop because of cancer. Three years is huge in a child’s life, everything that makes you who you are, is forming through this process. How the treatment is delivered, and the effects of the treatment have such an effect on who you become. So, I am so grateful for the team and their incredible approach and playful nature. Their commitment and dedication is extraordinary.
Thankfully Patrick has come on leaps and bounds. He started school last September, he absolutely loves it. A big gang of them from his Montessori went to the same school and they all look out for him. This was one of the things I would visualise when I was struggling during the early days of treatment. Patrick in his little blue school sweatshirt, running into the classroom happily shouting bye, and that actually happened on the day, blue sweatshirt and all. I can’t even describe that moment it was such a huge milestone. When I think of the amount of people it took to get him there some of whom I will never even meet, I’m just immensely grateful to each and every single one. It doesn’t just happen; it only happens because people make it happen.
Patrick is six now, he has spent more of his life in treatment than he has out of it, and he will continue to go to Crumlin for another five years but it’s testament to the amazing people there that he enjoys going and seeing everyone. We’ve reached this point in our journey, but other children and families are just at the start of theirs, so the support is always needed! – Lynsey, Patrick’s Mam.
