The Drive.

The first story is about my little cousin Alanna’s entrance into the world. Followed by our very own David’s story and his battle with cancer.

At this point, I would like to add that I have been inspired also by a very lovely person called Mike Groves, who unfortunately lost his battle with cancer on the 19th August 2009. There is also a story written by Mike’s daughter Katie

What he did in life, and the person he was, should inspire us all to live every day like its our last.

Rest in peace Mike, I hope we make you proud.

CG.

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Alanna’s Story.

The birth of my little angel.

Alanna was my first child. I was 24 at the time. Very happy, that my husband and I were having a baby girl. Our first baby.

We had the triple test done at 12 weeks and I came back as a low risk 400/1.

You think nothing of it; nobody had sat us down and discussed anything with us really; you get told “you’ll be fine”  “it’s normally older women who are at more risk” and “you are a low risk anyway.”

I was supposed to have Alanna by section on the 1st march, as she was breach, but I went into labour in the early hours on the 25/2/05.

When she was born the mid-wives did all the usual things. They brought the baby over to show us, but she was taken away very quickly. She had problems breathing. The Doctors were in and out; they said nothing to me, or my husband. We just thought it was because of her breathing, which they sorted out.

We were taken into recovery and two more Doctors came in, to look at Alanna.

My mum was there, it was 6.00 a.m., and she could not wait, she had popped in on her way to work. My husband and I asked what was going on and they told us that there was nothing to worry about; they were just making sure all was OK and normal.

We said nothing, as far as we were concerned, this was all normal. We had a healthy little girl.

The mid-wives came in and said nothing; they asked if I was OK and if I would like some toast, and asked if Alanna had fed; which she was having difficulty doing, so they showed me what to do and that was that.

The hubby went to get his Mum at around 10.00 a.m…  So I thought that I would try feeding Alanna again, but she still was not feeding.

A different Doctor came into the room. I was getting a little worried; I knew that all the attention was not normal.  I was getting stressed because I could not get the baby to feed. It had been hours now, she still had not fed and the mid-wives had not been around too much. So I asked,”What is wrong?”

He looked at me and said “We think that the baby has Down’s Syndrome, we need to take blood and get her checked out.”

I said “Ok, why do you think this?”

I could not believe it. I knew nothing about Down’s Syndrome or what the prognosis was, or what it meant for us, as a family.

I was on my own, trying to feed my baby and being told, “Oh, by the way, we think that your baby has Down’s.”

He went through all the obvious markers; low set ears, her nose, the camel toe and creases in the hand and her muscle tone.

The Doctor left the room, to give me time to digest the information. I thought, “Right OK; they are just being careful because of my family history,” (my aunt has a child who is disabled) so I tried again to feed. About 10 minutes went by and Mike [my hubby] and his Mum came in; as soon as I saw them I burst into tears; the look of horror on his face. He asked me what was up, I replied, “I can’t get her to feed and they said she has Down’s Syndrome.” The look in his eyes and his Mum’s face told me the whole story.  Gutted and heartbroken.

He sorted me out, and then called for the mid-wife to come and help. He could not believe I had been told by myself and no mid-wife had been around to check up on us.

Some time passed and they came in to get Alanna’s heart checked out, as the Doctor said he could hear murmurs, when they took blood from her she did not even cry, she has always been a fighter. It turned out she had holes in her chambers and valve problems. Which are all rectified now.

We were given the booklet to read. I have to say that the Doctor who told us about Alanna was very good, after all the fluff in the start. He got her referred for most things.

Just before Mike went home the Doctor who performed the section came in and said how sorry they were about Alanna  having Down’s Syndrome.

When every one left, I just held her, looking at her little nose and her perfect skin and started to sing “You are my sunshine.”

That’s how I sat for what felt like ages, just looking and singing; hoping things would be

OK.

That night about 11.00 ish I was taken down to a ward. I was put into a room, by myself and left to get on with things. No one came and sat down with me, or offered any advice, or even came just see if we were OK.

I was in hospital for a further 3 days. I was left to sort everything out, no one really bothered. I knew the ward was busy though; so I thought that was probably why.

When I got home 3 days later our own mid-wife came out. She was never told about Alanna, and didn’t know, until she saw her, at home. She was mortified that no one had passed on the message about what had happened.

It took 14 days for us to get it confirmed that Alanna had tri 21 [Down’s Syndrome].  This was also confirmed over the phone, while our Health Visitor was with us.

As time went on things got worse; I went into major depression and my husband was doing every thing to keep us all as normal as possible.  I was in a very dark place then and I hope never to go back, or feel that way, ever again.

I strongly believe that if there were more, easily accessible support groups; and more information about people who can help Mums and Dads in a position like us; or even something for people who just want someone to talk to. Then we would not have had to go through what we did.

I really do think that we need more information; which can be given out from the very beginning.

If we are offering our Mums a test for Down’s Syndrome, then we need to be giving out information and contact numbers about the condition, and what effects that it can have.

 

I also think that if someone has been given a positive test result, then details of a local Down’s Syndrome Group, or Counsellor, or a Volunteer Helpline, needs to be given out.

Someone who knows what they are talking about; and have been through it.

So that people who know what the truth is; and how good life can be with a child who has Down’s Syndrome. So that you don’t just have the Doctor’s opinion on what is best to do, for you and the baby.

People are very ignorant; I know I was; because there is not a lot of information around.  Don’t get me wrong, – there is more now than when Alanna was born, but I still don’t think it’s enough. We need to rally together; we need to help our new Mums and Dads to be ready for the challenges that having a child with Down’s Syndrome can be.

These children are also the children of our future, whether they have a disability or not, and we need to educate the parents, to give them the ability to get the best information from the start. To get the best out of the child, so they can do their best, in whatever they do. Regardless of where you live, it needs to be done nationwide, for everyone who needs it. Help, support and information should be there for all.

I hope this helps and sorry if I have gone on.

Ceri Gardner (Alanna’s Mummy)

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David’s Story

“We think it might be a tumour”

I was in Heartlands Hospital [Birmingham] in March 2008 when I first heard those words. The Doctor spoke them quiet softly and with care, but nonetheless, in a fairly matter of fact way. I knew that I wasn’t 100% well, of course, but I had no idea that I was that seriously ill.

There were more scans, x-rays and examinations; eventually the problem was identified – surgery was scheduled.

Probably the most chilling phrase was the Consultant Surgeon telling me “Statistically you have a 98% chance of surviving the operation.” It wasn’t a variable – the Operation was happening seven days later, no if’s; but’s; or maybe’s – 1 in 50 and I was not going to wake up!

Then he added – “but don’t worry I’ve done about 140 of these in the last year” – I didn’t ask if everyone survived – but I thought about it! I thought about it quite a lot over the next week!

On the Friday I wrote a new Will – to get things up to date; and two letters one to my darling wife, and one to my son Ben. Then I was ready; as ready as you can be.

I wasn’t frightened – I kind of knew that was negative and wouldn’t help. So I remembered what a dear friend wrote in Chalk letters 12” tall on the back of his garage/workshop door “THINK POSITIVE” – that was written in about 1995 – we lost him in 1997 – to Prostate Cancer – I’ve just checked, it is pretty faint, but it’s still there [in 2009]

“Your job is TO KEEP BREATHING” this was the sage advice given to me by the Consultant Anethsetist. “Don’t you worry about the medical stuff, or any pain or anything; we can take good care of all that, BUT your job is to KEEP BREATHING” “Right you are Doc – Keep Breathing”

That was the last thing I remember before waking up in Intensive Care Recovery – I was still breathing – GOOD – I was one of the 49 !

The Tumour – for that’s what it was – turned out to be malignant – but it hadn’t spread to the lymph system [I knew that if it had, it was BAD] I guessed that if it hadn’t it was GOOD.

BUT we think it may have got into your blood stream [BAD.] Your chances are 60 : 40 – but the Oncologist can sort out Chemotherapy for you. – Statistically that improved my chances by 9% [GOOD]

But at least I WAS STILL BREATHING !

The course of “Chemo” lasted nearly 6 months.

It wasn’t exactly “a walk in the park”. Yes – sure it “knocks you about a bit” and sure there are some side effects to live with and overcome; but there must be much worse things. The important thing is 18 months down the line from the big Op and at least I’m STILL BREATHING!

The last scan was “clear.” So that is GOOD.

Now I just need to get fit enough to drive an XK150 for 3000miles, in 13 days, in June 2010.

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My Story. By Katie Groves – about her Dad “Mike”

 

My Dad, Mike, was 75; but by far the youngest 75 year old you could have ever met. He was kind, funny, loving and much more.

 

He was taken ill in May 2009 and died in August 2009. A very short space of time considering how may years he had been on this planet.

 

It all started with headaches and of course you don’t think much of it, you say to yourself “I will have a lie down then I will feel better later.”

Unfortunately for my dad he was never to be the same.

 

I was called home on a Wednesday afternoon and I must say I have never seen anyone look so poorly, I phoned for the paramedic who whisked my Dad off to A & E with a suspected viral infection, after waiting 3 hours in A & E, Dad had a fit. We waited for an age to see him again; but were told nothing; until eventually about 5 hours later, once the fitting had stopped, he was moved to a ward. It wasn’t till the next day we were actually told he had been resuscitated.

 

Due to the fit Dad was sent for a scan and they found a brain tumour, I couldn’t believe what I was hearing – It seemed very surreal. By this time my Dad’s condition had got a lot worse, he seemed to loose weight and colour in the space of hours and truthfully I didn’t think he was going to last the night, his memory went and he was delusional, some of the things he was saying were completely bizarre. Family & friends were supporting my mum and I, the whole time, but the “little fighter” kept going and got through the night.

 

In the coming days Dad was move to Walsgrave Hospital [Coventry} for more specialist care and a biopsy so the doctors could really see what they were dealing with.

 

After a few days, the steroids Dad was taking finally took effect and he was almost back to his old self. Dad had the biopsy on his brain which was a major operation in itself, and once the results came back we all sat down with the specialist to hear the prognosis. It wasn’t to be good news. It was the news we were dreading to hear – Dad had a “glyoblastoma” - the worst possible tumour and it was aggressive. They also dropped the bombshell that it couldn’t be removed; Dad handled the news very well and came to the decision he would give his all and try to fight it.

 

After 2 weeks he came home and almost seemed normal he was able to walk, have a glass of wine (which he loved) and was still cracking the bad jokes we had all come to love.

 

A few weeks passed, where we talked laughed and joked, waiting for the day he was to start “chemo” and “radio therapy.” After a few weeks of treatment things were looking good the doctors said he was doing well and the nurses had taken a liking to him (he used to take them sweets every day !)

 

I took a week off work in July to take him for treatment to give my mum a break; by the Wednesday I could tell something was wrong. His mobility had rapidly deteriorated and he was starting to get confused – I just knew something was wrong. I was correct.

 

By the Monday he was back in Hospital, I was devastated – why my Dad? He was the best and didn’t deserve to be going through this. After a few days and some more tests the doctors told us there was nothing more they could do for him the tumour had grown considerably and no amount of treatment could fix it. Dad came home shortly after, and hour by hour seemed to get worse. I knew it was only a matter of time.

 

With the help of the Mary Ann Evans Hospice we took care of him – it was a difficult time for all of us and I had to do things I never imagined I would ever have to do.

 

Unfortunately my Dad lost his battle on the 19^th August 2009. I am now writing this on 13^th October 2009 with a tear in my eye – it’s still very raw and quite honestly it hasn’t sunk in that I will never see my Dad again – in fact the thought that I won’t breaks my heart; my mum has lost a husband; I have lost a father and that’s hard to come to terms with.

 

Craig Gardner is a good friend of my family and this drive he is doing is a fantastic way to raise some money for some very good causes, Cancer affects 1 in 3 people – that’s a scary thought – and I hope reading my story will encourage people to donate something. It’s a very good cause and nowadays the majority of people have been affected, or know someone that has been affected, by this horrible disease we call Cancer.

 

Every penny will help. So please give all you can.

 

Katie Groves x

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