Luka's Story

In April 2013, two and a half year old Lukas Proud was diagnosed with medulloblastoma, a highly cancerous tumour. On the day that would have been Lukas’ fifth birthday, his parents Andrew and Katy share his story.

In January 2013 we felt truly blessed as we welcomed our daughter Violet into the world to complete our family.

We had everything that we’d ever wanted – a happy marriage, a lovely home, great friends and family and our beautiful, cheeky and much loved two and a half year old son, Lukas. Nothing made Lukas more proud than Violet. She was our daughter but first and foremost, HIS sister.

In late March Lukas had a few episodes of sickness first thing in the morning just as he woke up, but would be happily playing for the rest of the day, seeming his usual self.

After initially being sent away from the out of hours service with gaviscon, but knowing something wasn’t right, Katy took him to see the GP. Thankfully the GP noticed an old bump on his forehead that had been caused by a fall a few weeks previously, and referred him to hospital as a precaution.

Lukas was given a MRI scan and then, on 27^th March at around 3pm, we were ushered into a family room. We knew immediately something serious was happening as a nurse, registrar and a consultant entered the room.  The consultant calmly said “Lukas has a small tumour at the base of his brain.” It was earth shattering.

We found ourselves in Manchester Children’s Hospital over the Easter weekend with an anxious wait for surgery on Tuesday 2^nd April. Despite the success of the operation, it was at this point that we were told that Lukas had medulloblastoma, a highly cancerous tumour that had already spread significantly around his head and spine. The level of his disease meant that he would face chemotherapy and radiotherapy with the risk of significant long-term side effects. Our little man was facing a real fight.

All that mattered was to stay together, be strong for Lukas, Violet and each other. Our wider family and friends were amazing in supporting us as we all hoped that treatment would go well.

We faced another hurdle as Lukas started chemotherapy, causing him to suffer a huge seizure and being admitted to intensive care. Even whilst there, under sedation and on a ventilator, his gruelling chemotherapy regime continued. However only days later he amazed us by being fit enough to be back on the ward, finishing his first chemo cycle and being able to go home before the second round.

He loved being back home after a long six weeks in hospital. He couldn’t wait to get back to sleeping in his beloved Thomas the Tank Engine bed! For a brief spell we could almost be a normal family again, with trips to the park, lazy days watching Disney’s Cars on the sofa and bbqs in the garden. The challenges were still present – like keeping Violet away from his intravenous central line at bath time, the two hourly wakes ups during the night to administer anti-sickness medications and daily feeds through his naso-gastric tube.

Feeling surprisingly refreshed and ready for the next battle we returned to hospital for round two of chemotherapy. Despite his anti-sickness medication, Lukas was struggling with constant nausea. This was enough to make his consultant concerned and send him for an early scan to check on progress.

The scan delivered the worst blow possible, despite the most gruelling chemo possible, which his consultant said an adult body would not be able to cope with, the cancer had not responded, and had spread further.

We were devastated. This meant that we were faced with having to bring forward radiotherapy treatment. We had been hoping to delay this for as long as possible to minimise the impact it would have on his developing brain.

We had another short break at home while his body recovered from the punishing chemo and while plans were put in place with the Christie for his treatment. A magical few weeks together, making the most of every moment.

His radiotherapy was six weeks, Monday to Friday under general anaesthetic at the Christie. Anyone who has seen a child with cancer will know how strong and inspirational they are. Lukas amazed us with his smiles and courage. Once he got over the initial tiredness of having radiotherapy, he visibly improved day on day growing in strength and playfulness.

The six week routine was truly exhausting and challenging, the 5.30am wake ups for the daily commute to the Christie, trying to explain to a hungry two year old why he wasn’t allowed breakfast, the heartbreak of carrying him down to the radiotherapy suites every day, watching him being put to sleep and trying to comfort him as he awoke distressed and upset from the treatment. Then doing it all over again.

After treatment, Lukas finally got a well-deserved break. The day after we set off to visit his favourite place – Thomas Land. Although he was weak and tired, nothing stopped him from making the most of all the rides. This was followed up with a summer of fun – trips to Peppa Pig World, softplay, the park and catch ups with all his friends he’d been missing while we awaited his scan in mid-August.

After a nerve wracking week of waiting, we were given fairly promising results. The radiotherapy had proved successful, with Lukas’ cancer responding well, with only minimal amounts of residual disease visible. We were thrilled with the results, however this was only half the picture. It was difficult for us to forget that with medulloblastoma recurrence is highly probable. We wondered how long would our little man be healthy, would the cancer return or would he be cured? We knew that the treatment options for medulloblastoma in under threes is poor at best with no protocol for reoccurrence at all. We tried to put this to the back of our minds and live in the present aiming to get back to some sense of normality.

Andrew returned to work more and we were even in talks with Lukas’ nursery about working out how he could return, as we knew how much he missed his friends. However this period was short lived.

In a matter of a couple of weeks we knew all was not well. His condition deteriorated in front of our eyes. It was heart breaking and we were devastated to have to return to the consultant so soon after good results. After an agonising four day wait to get a scan, we received the news we had feared the most, but knew was coming. The cancer had returned aggressively, spreading throughout his brain and spine. There were no curative options.

By now it was the first week of September, we had been eagerly looking forward to celebrating Lukas’ 3^rd birthday on the 30^th. The consultant delivered the devastating blow that with his level of progression she was not sure he would make it.

There’s not much to say about the next few weeks. Lukas took comfort in being at home, away from doctors and, as much as possible, in the company of his friends and his sister. He defied the odds and made it to his 3^rd birthday and managed a smile as he got his Henry (engine number 3 from Thomas the tank engine) birthday cake.

We knew what we were facing but didn’t know when. After his birthday he grew more and more tired and spent more time sleeping. It was our hope that we could keep him at home in his own surroundings. On Saturday the 12^thOctober at 1pm, in his own home, Lukas drew his last breath and grew his angel wings with us all beside of him. Life would never be the same.

Lukas continues to be a part of our life every day. Although Violet doesn’t know what happened, she knows that Lukas is an angel. Nothing fills us with more emotion than when she looks up to the sky, points to a star and shouts out “There’s Lukas!”

There’s an injustice and each day we question why this had to happen to our darling Lukas. He’s missed every day, we walk out of our bedroom and the first thing we see is his Thomas the Tank engine bed and a constant reminder of what we’re missing. Despite a constant blank space, life has to, and does, go on. Cancer shouldn’t happen to anyone, it really shouldn’t happen to a child.

Part of the battle is to raise awareness and build pressure for more research, more support and better, kinder treatments. One day, there’ll be a two and a half year old boy with medulloblastoma who will be able to expect to get better. For us, we will continue to miss our little man but cherish every special memory that we had with him.