What it feels like…when your daughter is diagnosed with with cancer.

By David Smith, Glasgow.

Saturday 21st June 2008. A date that is indelibly seared in to my brain.

That was the day we were told that our daughter Laura had a “lesion” in her brain. In plain terms she had a brain tumour.

After repeated visits to our local GP, local hospital and even the opticians we finally got a diagnosis.

We knew something wasn’t right. For months we had noticed Laura becoming very tired very quickly. She was being sick quite a lot and complaining of very sore heads. Her teacher in primary school said she wasn’t her usual self. Bumping in to desks, not reading properly and her handwriting was deteriorating. Little did we know that the tumour was growing on both her optic nerves and this was affecting her eyesight. And we couldn’t expect a 10 year old to tell us something was wrong. That was the job of the doctors wasn’t it?

I have to say that we were angry, very angry that this wasn’t spotted much earlier.  Despite all these trips to the GP and hospital not once did someone think to do a scan just to rule out something “sinister”. In fact on one visit we were told to get her to drink more fluid as she was tall for her age. The Doctor thought it was just growing pains.

Looking back now that anger still burns away inside me. Not that an early diagnosis would have saved Laura from the operations and chemo. It would however have saved her eyesight which was badly damaged by the tumour.

She is now registered blind as a result of the tumour damaging the optic nerves. And it is that aspect I struggle to deal with. No longer can she do the simple things like ride a bike. Something we loved doing together before her problems were diagnosed. Even days out or going to concerts or watching TV are not the same as they used to be. Not that you hear Laura ever complaining. She puts us to shame with her stoic and resilient attitude to life.

As her dad though, I just wanted to be able to do all the things we used to do together. And to be fair we still can and she enjoys it but it still hurts me.

I vividly remember watching Laura being transferred by ambulance to the Southern General as her condition was not good at all. She had been having convulsions and her eyesight was going when we rushed her to hospital. Thankfully they managed to stabilise her to move her to the Southern.

We spent all night with her waiting on someone to tell us what was going to happen. Then we got the news that they had to operate immediately due to the size and position of the tumour. I think we both knew there was going to be major surgery but it still hits you hard when it is confirmed. “Will we see our little girl again?” was the horrible thought racing through our minds.

Our 10 year old girl needed life saving brain surgery and we were distraught with worry.

So on the 23rd of June Laura was taken away for the 1st of her operations to remove the tumour. Trying to stay calm and focused for your daughter was the hardest thing I think we have ever done.

Your insides are churning. The tears are welling up but all the time you have to keep telling your little girl she is going to be fine. We were allowed down with her to pre-op and we held her hand as they sedated her. I couldn’t speak for the tears that were running down my face. Neither could my wife Joanne.

We then faced an agonising 8 hour wait as the surgeons operated on Laura.

After what seemed like an eternity we got the call to say she was in recovery and we could go up and see her. We raced back to the hospital and were greeted with a wonderful but heartbreaking sight.

Our daughter was awake and smiling but all wired up with tubes coming out her head and arms. Again the floodgates opened the minute we saw her. Our basic thought was…”She’s alive”.

LauraWe were told before the surgery how serious and complicated it would be and were told of all the things that could go wrong. We just held her hand and in between the tears we told her how much we loved her and how brave she was.

Later on we were told that the surgeon had removed as much of the tumour as she could without knowing if it was benign or malignant. In other words she would need another operation. At that time it didn’t matter.

Our daughter was still here and needed us to be there, cuddle her and reassure her everything was going to be ok. In turn we needed our parents to do the same. We were fortunate that we had a close knit group of family and close friends who all rallied round. Without them I dread to think how we would have coped.

From memory I think Laura spent 4 days in hospital and was then discharged. She was making remarkable progress from major brain surgery. So much so that the surgeon was more than happy to send her home to recuperate.

In between times we had a meeting with the senior oncologist at Yorkhill. Again I vividly remember going in to a little room to meet him. Strange how your mind doesn’t compute the aftermath or the nature of what has just happened. He explained what had happened.

They had taken samples of the tumour and sent it to leading cancer centres in the UK and Europe for a diagnosis. All the while we had been praying and hoping it was benign.

Sadly it wasn’t. And it was his words “Laura have you heard about cancer” that made me numb and frozen with fear. I just remember uttering the words “oh no” as I struggled to hold back the tears. My wife was the same as we looked at each other and our hearts sank.

He explained what they found and that for Laura to have a chance of a full recovery then the remainder of the tumour must be taken out.

This meant a 2nd operation on the 24th of July. 4 weeks on from her first op she had to go through it all again. And after that she then faced 56 weeks of Chemotherapy and 6 weeks of Radiotherapy.

Little did we know that for the next year the Beatson and Yorkhill were to be our homes.

The 2nd operation was a success. Again she made a remarkable recovery and we got the good news that they had managed to remove all of the tumour.

Only then were we told it was the size of a tennis ball and she now only had about ¾ of her brain left.

In August of 2008 she started her treatment in the Schiehallion unit at Yorkhill Hospital. I have deliberately decided not to go in to great detail here. I think this is a very personal and delicate issue as many parents regrettably will find themselves in the same situation as us.

What I can say is that the treatment, the support and closeness of everyone involved was absolutely tremendous. There is a bond between all the children, parents and staff that I doubt you will find anywhere else in the NHS.

After a year of treatment Laura was finally free of the repeated trips to hospital. Apart that Is for the scans and checkups with those who treated her.

Life would never be the same again as the stress and worry took its toll on us. Thankfully having a close family, a great circle of friends and understanding employers helped us cope as best we could.

To her enormous credit Laura finished her P6 having missed most of it and then P7. Again the support she was given from Rashielea and the Social Work in Paisley was second to none. This then transferred up to Park Mains High School who have also done a brilliant job ensuring Laura gets the education she needs.

It doesn’t seem like 6 years ago that our world fell apart. Worrying before and after each scan in case the tumour had returned. I know I always felt physically sick with worry awaiting the results.

However, in March this year we got the news that we had always hoped for but privately thought we might not see. On the 16th of March, a day before her 16th birthday, Laura was given the all clear by her oncologist.

It was unexpected as we thought it was just a routine check up and see how she was doing. I wasn’t at the meeting but my wife phoned to give me the news and I had to put the phone down as I literally couldn’t speak. Once I had composed myself I rang her back to confirm what I thought I had heard. And yes I had heard correctly….she was cancer free!!!!!!

I just broke down and cried with sheer relief. My baby girl finally had a future to look forward to and so did we. Needless to say once we told family and friends we were inundated with good wishes for us and Laura. And on the 17th (her birthday) we took her to her favourite restaurant Frankie & Benny’s for dinner.

The only person missing who I wanted more than anyone to hear this news was my dad. Sadly he passed away in 2010 while Laura was just finishing her treatment. I like to think he is where he is with a big smile on his face knowing “his girl” was on the mend and doing well.

Life changed forever and so did we since that day back in June 2008. The stupid things that upset us or worried us no longer do. Material things no longer have the same importance or value. Laura’s health and happiness is all that ever mattered but even more so now.

The way Laura dealt with everything, the awards she won and her refusal to lie down was an inspiration to us and everyone who met her. She insisted on attending Girls Brigade through her treatment. She did her Duke of Edinburgh bronze award.

She raised money for Yorkhill and other cancer charities including Clic Sargent. And it was the latter who were there for us when we got Laura’s diagnosis. They immediately gave us financial aid as well as help on life, benefits, support and how to cope with Laura’s condition.

And this is why we support them financially to this day. Sadly more children will be diagnosed with cancer so every penny we can raise will hopefully help other families the way it did us.

I hope this gives others in the same situation as we were some hope. And to know that cancer can be beaten. 

I have two favourite photos; Laura collecting her Endurance Award from the Girls Brigade. The other one is a great favourite of mine; this was taken at Edinburgh Castle when she was invited to contribute to the King James Bible 400 year celebrations. She wrote a piece of it in her own handwriting (as did thousands of others) which was then presented to HM the Queen.

Galaxy S3 014

www.clicsargent.org.uk‎