update

Hi, sorry been too busy to update but hear goes.

Last Monday Lewis had his bloods done, these were not too bad. He had some mouth ulcers and other sores from the chemo. The doctors gave him some thing to treat these. The have been going away slowly but not enough.

Wednesday Lewis went back in hospital as the doctor was not happy with his drinking, he's not having enough. They stopped one of his chemo that we give him at home and done more blood tests. Thursday bloods done again and this time docs were happy with him.

Friday bloods done first thing and a trip to Charlies day ward Basingstoke hospital for a blood transfusion. So much for a week out of hospital.

The weekend Lewis had some life in him as the new bloods kicked in, he has started to eat well and things were looking good for a week in from today.

We left home at 9am heading off to Southampton to Piam Brown ward for a week of intesive chemo. After a check up and as he still has a few ulcers we was sent home.

So this week Lewis is out of hospital, lets hope we get in next week to get this week in week out finished as it seems to be week in two weeks out and a few days in hear and there.

Any way Lewis is feeling good in himself and eating and drinking well.

Saturday 11th April

Bit of a boring week not much going on for us, lewis has been sick most mornings but only lasting for an hour or two.

Tomorrow we have Ben and Kelly, Jamie and Heather all coming for dinner and a walk with the dogs. Lewis has made crackle cakes and mums made her chocolate cake.

The nurse is booked in for Monday morning to take Lewis's bloods ready to go in again for a week in Piam Brown ward.

I will post everyday with the updates from the hospital

Tuesday 7th April

Last night was a long one, mum and Lewis up all night being sick, This morning he continued to be sick so I called the hospital. Just as we thought yesterday a trip to hospital was booked.

Lewis was given a can of Red Bull through his line (Fluids) and some anti sickness, that worked wonders and within an hour or so he was full of life.

He just needs time to catch up on sleep now.

Monday 6th April

Well after a good week at school lewis is ready for a few weeks off from school.

He has been well all week as long as he has his anti sickness. He is on chemo at home for the next 8 weeks with the week in week out routeine.

As normal things are not always what they seem with a phone call today asking why we never turned up for our week in, Last week we was told not to come in and we will be in Bank holiday Monday. Anyway we agreed to make our way in to hospital for the week until I checked the due to the drugs he is on we are unable to come in, so all change again, we are in next week as was.

Lewis is feeling sick tonight so we may be in hospital anyway tomorrow.

This week our rabbit Lucy broke her leg so we had to take her to the vet. We now must have the worlds biggest three legged rabit.

I will update tomorrow with Lewis's sickness update.

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.

Wednesday 25th Feb

Lewis had a bad night and got the sick bug dad had yesterday and been up all night. This morning he had his nurse around to take bloods for a cross match for the transfusion today, she suggested we go in for a check up. after an xray Lewis was hooked up with IV to put fluids in him.

At 3pm he was started on the transfusion till 7pm then back onto the Fluids again, he will stay on that all night so its his first unscheduled night in.

O yes, nearly forgot all they found on the xray was a big POO. LOL

Tuesday 24th Feb

Today was hospital day, all day. Left at 7-30 and got back after 6pm. Kicked off with a Lumber puncher and then 4 hours of IV Chemo. Its a long day being stuck inside all day and not being able to escape. Next time we will take the wire cutters.

Tomorrow Lewis is going out for a few pints again as his bloods are low. Then thats it until Monday week when Lewis goes in for a CT scan to check the progress of his treatment. Lewis is looking forward to the gap between treatments so he can get to school.

A few of Lewis's friends have been raising money for the Piam Brown ward and I will post photos and details later this week.

Friday 20th Feb

Thursday was the last day of Cytarabine, glad thats over. Lewis had bloods done at the same time and it's good news as they are looking good. His Haemoglobin level is low but every thing is on the way up, (for now). neutrophils are good so less chance of infections.


Hg. 82
White 2.7
Nu. 1.78
Plt. 230

lewis spent the afternoon at his friend Ryans house and done too much as he was Zonked out when he got home, didn't we know it.

This morning Mum, Lia and Lewis got packed up and left me home alone with the dogs and left for Wales for the weekend.