Ewing’s from a mother’s perspective

As a mum, Lesley had to watch Matt go through two lots of treatment. A parent’s view is very different from a patient, fraught with many different worries.

On Friday 2nd Nov 2007 at approx 3pm our lives changed forever.  It was confirmed that Matthew had a tumour in his heel. He simply looked the doctor in the eyes and asked “so what happens now?”   This must be every parent’s nightmare, my son had cancer. But he was a teenager, they don’t get cancer, I wanted it to be me.  Nigel and I felt numb and I think in shock.

Matthew was very controlled, until he left the hospital where he hit a tree with one of his crutches.

I wanted to push the tree down I was so angry.

Matthew went into research mode. He needed to know what type of cancer he had, what the treatment would be, what effect the drugs would have on his body and more importantly whether they could cure him.

It seemed that our feet didn’t touch the ground; Matthew was to be treated at the University College London Hospital and would be going for tests the following Monday. We stayed all week and Matthew had his first chemo cycle. The treatment would take a year to complete.

As each chemo approached I felt more and more helpless, he was going through the scariest time of his life, he was fighting for his life and it was then I realised that having cancer treatment is not just about having drugs pumped into your body and the pain that brings, but it’s also about all the other areas of life that are the suddenly thrown into disarray.

Matthew is a very loyal boy, he is intelligent and has strong opinions, he’s just a normal boy, but he cares and would stop at nothing to help anyone who needed it. He helped friends get through exams, and was always there in times of need.

Yet friends, some he had known all his life, deserted him. As parents you do all you can to support and guide your child, but there are some things you cannot replace and those are the friends they make.

Matthew never went to a local school, so he thought he was lucky to have two friendship groups.

Sadly that was not the case. Phone calls and texts were not returned and he was excluded from social events being told “nothing’s happening tonight mate” when he knew there was.  One very distressing event occurred when a message appeared on MSN indicating that his cancer had returned and when Matthew asked the individual who had posted it why he was blocked.

Please don’t say “but they were teenagers”. So was Matthew, but it was him fighting for his life and suffering not them. All he needed was a little bit of support and compassion, when he was well he could lead a normal life, but he was made to feel like a leper.

Matthew has never walked away from a friend in need. I ask any parent to put themselves in my place, if your child was hurt in this way would you be so forgiving, I don’t think so. It simply added to the pain of him having cancer.

Those friends who stayed loyal (mainly school friends) got him through the next year.  I can’t thank them and Tunbridge Wells Grammar School for Boys enough for the way they supported Matthew. He would drag himself into school on days he was feeling unwell and I would beg him to stay home. I hated leaving him at the school gate, but he said he needed to go in because he felt “normal” when he was there. The boys and staff looked after him, which was so reassuring for me. It was extremely painful to watch. Like Matthew, we also had friends who we held very dear move on and that is very sad too. It was a very, very lonely time for him.

Christmas 2007 was a complete disaster. Matthew had picked up a chest infection and was very poorly, but his consultant wanted to continue with the treatment as it seemed that the chemo was working. So on Christmas Eve he was admitted for his 3rd cycle. Nigel had flu and was very poorly and was not allowed anywhere near the hospital. Our family were determined to do all they could and my brother, sister, niece and brother in law went to great lengths to bring Christmas to the hospital. They did a wonderful job and I don’t know what we would have done without them.

Friends also played an important part by sending messages of support at a very difficult time.  By the end of Boxing Day Matthew had gone downhill and I too was beginning to feel unwell.  The world outside carried on as normal, but we were all suffering; what else could this cancer do to us? It was one of the lowest points, but yet again it was Matthew who was the strong one; he even went back to school to sit exams a few days into the New Year.

Sadly, in January 2008, Matthew received the news that the tumour was too big for the doctors to remove without the risk of it being disturbed and the possibility of it spreading; the best option was to remove his foot.

That was the only time I had to leave a consultation. I heard this voice screaming in my head, “this was not what we had been told would happen, hadn’t the chemo been bad enough for him! Now this, how much more could he take?” Matthew just looked his consultant in the eyes and asked about other options, it was typical of his strength. I felt so helpless my head was spinning and I tried to stay focused, but thought I was going to pass out so I left the room and was physically sick.

What type of mother was I? It wasn’t me who had just had such shocking news. It was my son and he was handling it and I was not. I was all over the place, I didn’t know what to say to him, I just kept looking at him and thinking how is he going to deal with this.

I felt that I had let him down; how could I say to him “it’s OK”, how could I reassure him that this cancer that a few months ago we had never heard of, was going to go away and he would get on with life. I felt guilty and totally inadequate. I remember telling him “Son I can afford to lose a small piece of you if it means I can keep the rest of you”. Was that selfish; was I just thinking about how I would cope? I don’t know, but I still feel the same today; I can’t afford to lose this fine young man who is not perfect by any means, but whom  I love with all my heart; he has so much to live for and so much to give.

A friend of mine once put it into words for me, she said “Lesley, Matthew is here for a reason” I think she’s right.

Only a mother who is presented with the devastating dilemma of watching her child suffer will be able to really understand how I feel.  Sadly a close friend of mine went though the same thing at the same time and I’m happy to say her son is doing well – click here to read Iain’s story. It helped having someone who knew what I was going through. You have this pain in the pit of your stomach; it never goes away even today it’s still there.

I was honoured to meet some very, very strong women at the UCLH.  Some of their children – like Matthew – lost limbs and sadly two mothers lost their child; it broke our hearts. I saw a world that was very hard, but the teenagers are just so strong, so brave and so positive. I know it’s difficult to understand, but the teenager unit at UCLH is a “happy” place. Sadly the teenagers have to endure such harsh treatments to make them better, but they simply “get on with it”. They have no option.

Matthew was nearly a man when he was first diagnosed, he should have been out having fun, but he went back to being a boy. When he was sick he needed his parents and we just did what we had to do. I went into a place and I didn’t dare let anyone enter. It was how I coped; I did cry but it had to be in private because how could I go to pieces, it was my son fighting for his life. But I must stress that without the support of family and friends I would not have got through and will always be grateful to them.

The day Matthew had his foot removed was a nightmare.

It started off with us listening to the radio and hearing a Heather Mills-McCartney joke as we were waiting to go into hospital.  I’m not going to be a hypocrite because a few short months before I would have laughed too, but today was not a good day. Today it was my son and leaving him at the door to the operating theatre was like having my heart ripped out, it physically hurt.  Again I asked “why did it have to be him – why couldn’t it have been me?”

When he came back from the operation I tried so hard not to look at where his foot had been, and as usual Matthew was the strong one and simply said “well the cancer has gone now.” How could he think like that and all I kept thinking was “god how is he going to cope”. I found it difficult to tell people that his foot had been removed; Matthew would never be the same again.

Well he copes, and he is still Matthew and if anything he is stronger and more determined.

He returned to school eight days after the operation and by the end of May 2008 he was using his “new” leg. One evening he called me as he had something to show me. I went upstairs and he walked across his bedroom towards me. I could see the pride in his face; Nigel was standing behind him and had tears of pride in his eyes.  It took me back to his very first steps, tears of joy and sadness filled my eyes, but my heart was breaking. He had come such a long way in such a short period of time I was so proud of him I could have burst.

Matthew continued to get on with his life, got great exam results despite missing most of the school year and the following year got the 5 A levels he wanted and a place at University of Leicester to study Law.

It was all going so well until September 2010. Matthew had been for his 2 year check and been told all was well only for the consultant to take a closer look at his x-ray and see the spot on his lungs.

Now what does a mother say to her child after thinking all was well? The numb feeling returned.

I don’t know what I said to him; I just looked into his eyes and could see his fear. He had just finished his first year at Uni getting great results and winning awards. He had a really good group of friends and a lovely girlfriend.

Would they all go away and leave him again? Would they let him down like before? No not this time. University offered support; his friends have stayed strong and his girlfriend has been by his side throughout. Did I find having another woman in the frame being close to him hard? The answer was simple, no I didn’t. Nigel and I wanted to make sure that she always felt part of what was going on.

However, it was me Matthew came to in the middle of the night when he couldn’t sleep and told me he was scared. It was me, his Mum, who held him in my arms just trying to tell him he would get through it again. I remember the day he was born, how I held him in my arms, he was so small so vulnerable and I felt this powerful need to protect him; any new mum will tell you the same. I had failed to protect him, but I had to stay strong and focused and together we would get through whatever was needed.

Although the treatment this time was over a shorter period of time it was much harder. The tumour was removed in November 2010 at the Royal Brompton Hospital.

Matthew has developed a very strong relationship with all his consultants, doctors and nurses and he trusts them, and we are so grateful to them. We put his life in their hands. They understood when Matthew was down; they never took offence when he was moaning, nothing was ever too much trouble, they became our “family” when we were at UCLH, Maidstone or Brompton, we felt safe.

Then after Christmas it was back to the UCLH for the high dose chemo, which was brutal.

I have never seen Matthew so ill. He was on a transplant ward as he had been given a stem cell transplant. We had to be extremely cautious as the treatment meant he had no immune system whatsoever and even someone sneezing could be fatal.  I was not able to stay by his bedside at night and it was not easy leaving him knowing how poorly he was.  He looked so ill, was not eating, his blood pressure kept falling and at one stage we thought he would have to go into intensive care. But again the doctors and nurses were so reassuring and supportive. I don’t think I have the words to express our thanks to everyone at the UCLH, Maidstone and Brompton hospitals who we have met over the past four years, they do such a wonderful job and “thank you” just doesn’t seem enough, but God we do thank you !!!

Matthew, being Matthew, was out of hospital in three weeks and continued his recovery at home.

Now we go back to three monthly checkups; they are nervous times and if I’m honest I’m scared stiff when he goes in to see his consultant.

It was during his high dose chemo that Matthew first told me of his plans for his charity. I will be honest, I was not in favour.  I wanted him to just concentrate on getting well and getting on with his life, go back to University and get his law degree. Then it occurred to me that he is getting on with his life.

Ewing’s has had such an effect on his life; it will always be something that drives him because it took so much away from him. Matthew is doing this to spite the Ewing’s, not in spite of it.

He can no longer play sport the way he wants to; he can’t be on his leg for long periods of time. Every time he stands up he has to put his “leg” on, it’s with him 24 hours a day. Please don’t get me wrong, I know that every person who has had a form of cancer is affected, but I can only talk for my boy on this occasion.  People may think that once you get well that’s it; well mostly it is but having cancer leaves those affected with both mental and physical scars of some sort.

Every day I thank the powers that be that researchers are doing all they can to find a cure and that doctors and nurses are doing all they can to help cancer sufferers get well. Matthew has always been a boy who gives his best at whatever he puts his mind to. He wants to do all he can to make a difference.  He wants to raise awareness to stop children suffering like he has; he wants to raise funds to help find a cure for the disease that has changed his life and his thinking is all about saving lives.

This charity is designed to make a difference and Matthew is its driving force.

I know my world is a better place for having him in it; he is my boy and I’m so proud of him.