A tumour is spreading through brave Alfie's body

Story by Claire Elliot

DEVOTED mum Tracy Milne is hoping a cure can be found in time to save her four-year-old son who has a deadly tumour spreading through his body.

Little Alfie is thought to be one of only three people in the UK to suffer from a rare and invasive condition called lymphangiomatosis, which has left him with a growth so big surgeons are unable to remove it.

The benign tumour spans his entire right leg, pelvic area, bowel, spleen, part of his stomach, and is now spreading to his spine.

As a result, brave Alfie, from Peterculter, Aberdeen has to take a daily cocktail of drugs - including morphine - to combat the pain he is in.

The tot is also given potent cancer drugs [BUT HE DOES NOT HAVE CANCER] and steroids once a month to help his blood clot or he will die from internal bleeding.

The condition caused by a malformation of the lymphatic system, which affects the blood, bones and muscles, has also left him with brittle bones. A fall from a chair is enough to leave him with broken limbs.

Mrs Milne, 38, said: “It just breaks my heart to watch him and the worst thing is there is nothing I can do to help.

“With all the will in the world there is no medication that can cure him. It’s all just trial and error.

“Sometimes I just want to wrap him up in a little bubble.

“It’s awful, but you’ve just got to get on with it.

“The mass is in his right leg and there is no beginning or end to it. It goes right up into his pelvic area, spleen, part of his stomach, bowel and it’s starting to spread to his spine. It’s not something that can be removed and he’s on constant pain killers every day.

“It can lie dormant or spread at a very rapid rate and there is no cure.

“Alfie’s a bright little boy and quite a character - he’s got to be strong to survive.”

Mrs Milne and her husband Mark, 42, first noticed their son’s leg appeared swollen when he was in is baby walker at just six months old.

They took him to see their GP who referred him to the Royal Aberdeen Children’s Hospital for an x-ray.

But it was not until he was 18 months old, after an MRI scan at Great Ormond Street Hospital, that the family was eventually given a diagnosis.

Mrs Milne said: “We were devastated but we didn’t really understand the extent of the condition at that point. We were told there was no cure but he may be able to lead a relatively normal life. But unfortunately for us that’s not the case.

“Until last year, apart from having a big leg, anyone would have thought there was nothing wrong with him. He was a healthy child. It wasn’t like he was sickly. But last summer things started to go wrong.”

The mother-of-two, who also has a son Lewis, eight, noticed a bruise on Alfie’s arm and his leg started to discolour.

At first she thought it was just a symptom of the condition.

But after flying from Aberdeen to London for a two-day check-up at Great Ormond Street Hospital the family was dealt the devastating news that Alfie was bleeding internally - and that the flight alone could have killed him.

Mrs Milne said: “They couldn’t stop the bleeding. He had several transfusions - one every day for five days - but they didn’t work because the tumour was absorbing all the blood.

“He then went on to get blood products and luckily for us his body started to respond and stabilise. We were just lucky we were in the right place at the right time.”

Alfie spent four weeks in the London hospital, where doctors also did a needle biopsy on his leg to confirm the MRI results and inserted a Hickman line into Alfie’s chest to allow permanent access for blood to be taken and drugs to be administered.

As his blood was not clotting properly, however, both procedures had a high risk.

Recalling the ordeal, Mrs Milne said: “There were two occasions when we had nurses applying pressure to the wound for hours at a time to try and stop the bleeding.

“Mark and I were standing watching helplessly trying to comfort our child as he could see blood pouring out of his chest. At this point I really thought that was it and we were going to lose him but he is a fighter and eventually the bleeding stopped.”

Alfie, who takes up to 13 tablets a day and gets his blood tested ever fortnight, is unable to walk because of the size of the tumour in his leg.

Instead he uses a wheelchair and gets about indoors by crawling.

He also has a low immune system as a result of the cancer drugs he receives and even an infection can be life-threatening.

But for the last three months the family has been given some respite as the cancer drugs and steroids appear to be keeping the disease in check.

He still gets his blood checked every two weeks, an improvement on every two days.

And the tot, who like any little boy loves to play with Lego and is a fan of Power Rangers, Harry Potter and Star Wars, is now looking forward to starting nursery after the summer holidays.

But Mrs Milne desperately wants to raise awareness of the disease, which has a high fatality rate, although some patients can live for 10 years or more.

The mother-of-two and her husband, a self-employed joiner, are now in the process of setting up a charity in Alfie’s name to raise funds to aid vital research into the condition.

Mrs Milne, who is also planning to run a half marathon to raise the profile of the illness, said: “Because there is no cure, Alfie is being treated with cancer drugs but there is only so many years you can take cancer drugs without it having side-effects.

“And they have not been able to wean him off the steroids because when they did take him off them his condition worsened and he started to bleed internally again.

“It’s changed our lives. Before I liked to plan my life years ahead of me but it’s made me realise I have to live for today. We have to concentrate on the here and now and enjoy him now because we don’t know what’s going to happen in the future.”