I hope you never

I hope you never have to hear the words, "Your child has cancer."

I hope you never have to hear, "The prognosis is not good."

I hope you never have to watch your child undergo radiation or chemotherapy or emergency surgery.

I hope you never have to see a rubber tube surgically inserted into their chest, be connected to IV machines for hours and hours.

I hope you never have to watch your baby boy look at you with fear in their eyes.

I hope you never have to hear your child Scream so load it hurts your heart.

I hope you never have to hold your child as they vomit green bile.

I hope you never have to sit there for 4 days waiting for your child to move.

I hope you never have to inject morphine into your child every 20 minutes to stop their pain

I hope you never have to feed them through a tube in their nose, through their chest just to keep them alive.

I hope you never have to watch their bodies become so thin because they don’t eat for 32 days

I hope you never have to watch the "cure" slowly take away their identity, as they lose their hair, become skeletal, then swell up from steroids, develop severe ulcers in their mouth that stops them eating, become barely or unable to walk or move, and look at you with hope in their eyes and say, "I love you."

I hope that you never have to stay in the hospital for weeks, months, at a time, where there is no privacy, sleeping on a make-shift bed, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, "There is nothing more we can do."


I hope you never have to watch a family wander aimlessly, minutes after their child's body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child receive radiation over and over again.

I hope you never have to see your child’s skin fall off due to treatment designed to save their life.

I hope you never have to take your child home (grateful but so afraid) because the chemo and radiation has damaged their muscles, lighter, pale, bald, and scarred; with tubes hanging out of their chest. And they look at you with faith in their eyes and say, "I love you."

I hope you never have to face the few friends that have stuck beside you and hear them say, "How long has he got left.”

I hope you never have to say “he’s fine” when he’s really very ill but you don’t want to upset your few remaining friends.

Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to "normal". I hope you never forget what normal is…. Or was

I hope you never forget what a normal conversation is that doesn’t include cancer in the sentence.

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words...
"The cancer has returned."
And watch as your friends become even fewer and fewer.

I hope you never have to experience any of these things...Because...only then...

Will you understand.

Day 5 Friday

Hoping to get out today Lewis's levels didn't come down quick enough so we will be in till Saturday 8am. Lewis spent the morning in school and then the afternoon doing some drawings and model making with mum.

Doctors came around and done their checks, Lewis had a pain and doctor suspected a Hernia, he will have to under go more checks if he swells again just something else for us to deal with.

We go let out at 8am this morning and have two weeks off, back to school on Monday.

Day 3

7am this morning Lewis was taken off the Meths and was put on to another flushing fluid, they need to take out what they put in now, we have been told they know what their doing. Lewis was being sick through the night and also this morning so they changed his anti sickness and he is OK now.

He managed an hour at school on the ward to do some school work he took in with him.

Lots of visitors tomorrow with Ben and Kelly in the morning and Zanni a bit later, Jamie passed his driving test again today so he is coming up for a visit later in the day.

He managed to sleep for most of today which is good as he didn't get much sleep last night. More children in and out of the room again today so we get to meet other people. Lia spent the day at the hospital today and also went to the inward school.

With a bit of luck he may be out tomorrow as he is having his bloods done throughout the night and if his levels are good he can come home, we wont hold our breathe.

Jimmy Carr Says Hi =D

Day 2

Midnight Lewis was hooked up to the drip to start fluids and at 7am he was ready to start the Methotrexate (Its yellow and lasts for 24hrs) Chemo. Just as Lewis was getting settled it was time to put him to sleep and give him a Lumber puncher.

He came around quickly from the op and was watching TV again. I popped in to visit and for a coffee while in between jobs. One of the children in his room got moved and someone else moved in.

Lewis started feeling sick and was a few times, this lasted throughout the afternoon, he hasn't eaten much today but has been drinking a bit.

Lia and me went back in to visit for a few hours tonight and will be back there in the morning, Lewis will be off the Meths by 7am and will be flushed through for the next few days to get it out his body.

Lewis is looking forward to his visitors this week.

Monday 23rd March

We got to hospital at 9-45 this morning nice and early to start at 10am as instructed. At 10am nurse Mary took Lewis's bloods and sent them off to the lab. We was told that was it for a few hours, what we should of been told is that was it till mid-night, we could of gone home and come back in that time, never mind.

Anyway Lewis is being started off on a drip at mid-night tonight and then he should have his 24hr Chemo from 7am.

He managed a few hours in the ward school today so that kept him busy. He favorite saying at the moment is whats for tea. always after food that boy. He also has a craving for chocolate.

Lewis is in a room with 3 others so no room for swinging cats, no room for clothes or putting things. Never mind only 5 days to go.

Sunday 22 March

Lewis start his chemo again this week ready for tomorrow when he and mum go into hospital for the week in week out for 8 weeks. I will be posting every two days now as his chemo has stepped up a gear and there will be lots to report on, I will also take photos of the visits in and out of hospital.

Emails welcome I will pass on to Lewis if you want

lewisedgson97@hotmail.co.uk

Nice one Boys

Connor, Kurtis and George off their own back decided to do a sponsored bike ride to raise money for Piam Brown ward where Lewis is being treated for his Cancer. So after going around family and friend with cap in hand they managed to raise a massive £531

On 22 Feb they got on their bikes and headed off around Oakley, Malshanger, Hannington,Ashe,Dean down and then back to Connors house. All together they managed to do 10 miles. Well done Boys and thank you for your support.

A special thank you to the Dads for going with them, hope you have recovered.

Good news

We found out on Thursday that after the scan Lewis had on Monday that he is responding very well to the treatment so far and that he only has a few small nodes (cancer lumps) left and all the other ones have now gone. He will still have to complete the full course of treatment over the next 4 months but we are very happy with this news.

Liams head shave for charity

One of Lewis's friend's had his head shaved to raise money for Piam Brown ward and managed to raise £330. Well done Liam you will feel the cold now, your hair grows back quickly so dont worry. A big thank you to every one who sponsored Liam in raising this money.

Monday 9th March

As you can see below Ben has been busy this weekend with Purple man out and about in Southampton raising money for Piam Brown ward.

Sorry for the long gap between posts, this will make up for it.

Lewis's friend's also raised lots of money over the last month and I will post the details this week, just waiting for the photos to come in.

last week was not too bad as Lewis managed several days at school. He got to worn out towards the end of the week and went in on Friday for a blood transfusion. This lead to some energy to go out for the night.

Lewis, Mum and me (Dad) went to Pizza Express for dinner and then on to The Anvil to see Billy Ocean. Lewis only managed through to 10-30 so we left and got him back to bed.

We had a quiet weekend to recover as we were off to Piam Brown for a CT scan this morning, Lia came along to see what it's all about and we should have the results in later this week. Fingers crossed we will have good news.

Lewis had bloods done today and yes youv'e guest it, there too low to start Chemo today, we must wait till Thursday. All being well Lewis will be in on Monday for one week Chemo at Southampton.

Anyway back to school in the morning for Lewis, he's looking forward to Red Nose Day for a sleep over.

CRAZY PURPLE BROTHER BEN!!

And He Says It Was For Charity.......


I Think he enjoyed it!!!!!!! Please donate to the PIAM BROWN WARD vis http://www.justgiving.com/markedgson

Sunday 1st March

Well we finally got out the hospital on Friday afternoon, Lewis is much better now and the sickness has gone. We are having a lazy weekend and Lewis hopes to get back to school tomorrow. There's no more chemo for a few weeks so he hopes to get to school everyday.

Lewis is looking forward to Friday night all being well we are off to see Billy Ocean at Basingstoke Anvil.