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.

Wednesday 18th Feb

A day of being mucked around. Lewis was to have his nurse in at 2pm to give his cytarabine chemo, at 1pm we got a call asking us to go up to Basingstoke for it. With Lia and two of Lewis's friends in tow they all went up to the hospital. After a long wait, even though they were expected he finally got his chemo.

Tomorrow is the last day of cytarabin. Lewis is due in on Tuesday for more chemo, then a week off we hope.

Mum, Lia and Lewis are off to Wales for the weekend leaving me (dad) home alone, Saturday night is Poker night so if anyone wants to pop round for a few hands give us a call.

Its cold up top

Sunday 15th Feb

This has been a full week of school with visits home at lunch time for chemo and a lunch. Friday was a day off school so Lewis and Lia played the Wii Fit all day.

Saturday Lewis and his friend Connor came with me (Dad) to watch Ben (Lewis's brother) play rugby, he plays for Millbrook in Southampton, they played Overton. Lewis got cold and week so I took him inside to warm up, he managed to watch the second half. We then came home to watch England play on TV and a Pizza.

Sunday we had the nurse around to do FBC's (Full blood count)

Hg. 69
White 1.5
Nu. 0.53
Plt. 309

Too low again for chemo tomorrow so we expect another pint or two of the red stuff. Big bro Jamie is coming tomorrow with his shaved head.

Monday 9th Feb

Lewis had his friend Ryan for a sleep over on Saturday night and spent most of the time playing on the Wii FiT, Lewis has had a bit of energy since stopping Chemo last week. Bloods were done again on Sunday and although the platelets were up every thing else remained low so off to Basingstoke for a Blood Transfusion today. We bumped into Jimmy who was in for his Chemo.

Hg. 61
White 0.8
Nu. 0.14
Plt. 216

Lewis managed to do an hour or so at school today then we got the call to go for bloods, he should be in school every day now in the mornings as Chemo will be in the afternoons. Lets hope the bloods stay good to finish this course of chemo.

As you can see from the video below Bens hair has taken a hit, I will get photos done tomorrow and post them, I am bald and yes it is cold.

In the photo this is Lewis chilling on his bed in hospital waiting for bloods.

Dont forget if you would like to say hello to Lewis or send your messages his email address is lewisedgson@hotmail.co.uk

Bens Bad Hair Day

As part of Bald week I (dad) have had my hair shaved, photos will follow later.

Ben has decided to have a bad hair day, see video. He is also going to go bald soon. Jamie is also doing this week so remember to look back to see photos.

Contains sceens of a balding nature


THANK YOU FOR HELPING TO RAISE £500 FOR THE PIAM BROWN WARD SOUTHAMPTON.

We are continuing to raise money for the ward so please support us and help children with cancer get the facilities they deserve.

Lewis's email address

If you would like to send messages to Lewis then hear is his email address

lewisedgson97@hotmail.co.uk

Dads hair coming off

Although he wanted to get to £500 dad is shaving his hair off tomorrow afternoon because Lewis has had his shaved and dad is doing with Lewis, he has another £40 to put in form work and needs £100 more, please if you are going to help us get to £500 now is the time to donate. Lewis has £10 he is putting in and I have £10 so we need about £80 that's all, thank you .

Friday 6th Feb

Today will be known as official hair loss day

After a week off chemo Lewis has found his strength to go back to school, today he managed to spend the whole day in school and enjoyed doing art this afternoon. He has been using the Pimped wheel chair to get around as this helps him to keep his energy. He is more stable and more like a child than a 90 year old man.

Blood counts done on Tuesday

Hg. 72
White 0.2
Nu. 0.04
Plt. 34

Down on the last one, next count is on Sunday to see if he can get back on the chemo.

Lewis managed to play a bit in the snow, see photos.

All week we have noticed his hair starting to come out in bigger clumps so he decided to take the plunge and have it shaved, its less mess and looks neater. In a week or two it will all be gone anyway.

I still have £140 to raise before I shave off my hair, thanks to all that have donated already, please if you are or want to donate and dint know how please email us or ask.

markthedrainman@aol.com

i will put up an email address later today for Lewis to receive your emails.

Tuesday

Lewis chilling at home

monday 02 Feb 09

Lewis was already to go back to school today and it snows, school closed. We couldn't waste a day so off we go to Basingstoke hospital for a blood test at a minutes notice. After Fridays transfusion we thought they would be OK, but NO.

Hg. 82
White 0.2
Nu. 0.07
Plt. 38

This means no Chemo tomorrow and with more snow forecast for tonight maybe no school.
Auntie Vikki arrived yesterday for a few days so at least Lewis will be able to spend some time with her.

Thank you for the donations over the last few days this money goes straight to the Children's Cancer unit in Southampton where Lewis is under for all his treatment.

UPDATE

Just had a call from Basingstoke saying we are to stop Chemo for this week as Lewis's bloods are too low to continue, he will have further blood tests this week and start Chemo again on Monday.

Sat 31st Jan

This week has brought us Blood transfusions and hickman lines, Monday we started with Lewis going in to PB ward to have his line fitted. He was knocked out with gas which didn't agree with him. The next day he was zonked out.

Lewis has had the week off school as he's been very weak and shaky, his bloods have been dropping all week seeing his neutrophils dropping from 10.8 down to 0.18 in 5 days. Finally he popped out for a few pints on Friday night. (A blood transfusion)

Today we saw Lewis more stable, no shakes and moving around more. He is so much different today than yesterday. He even managed to shout at us and go off in a huff.

Chemo is still being given at home with daily visits for the nurse, he has this for another 2 weeks then he changes over to another cycle.

For all Lewis's friends at school, he should be coming into school this week all being well.

The sponsorship is going well and we are over £300 now, thank you to everyone who has given, and every one who has said they will, as soon as we get £500 I am shaving off my hair so if you would like to see that then get the cash in by clicking on the widget.

friday 30th Jan

Just a quick up-date, Lewis has gone into Basingstoke Hospital for a Blood Transfusion as his bloods have been getting worse all week. He will be in till 1am tomorrow morning. I will catch up with this weeks news tomorrow.

Tuesday 27th Jan

Lewis spent last night in Southampton hospital after his op yesterday to put in the Hickman line, he also had a lumber puncher again, that's number 6 I think. His platelets were low yesterday so he had his first blood transfusion.

Now with the line fitted he wont have to have anymore injections and needles for blood tests, all this can be done through the line.

Lewis is feeling weaker and finding it hard to get around now so we have to help him out.

Up-date

Friday was the last visit from the nurse this week, we will see her back again on Wednesday. We had a call from Piam Brown ward about Lewis's Line (Hickman Line) see below, this will be put in on Monday so another small op and a full day and maybe night in the Ward.

Today we went to Bournemouth and had a walk along the prom, we took a wheel chair for Lewis but he kept jumping out, it was like Lou and Andy (I want that one).

Nanny and Grandad have come down for the weekend from Wales.

Getting closer to the £500 in donations so will have to shave off my hair soon, photos will be posted on hear for all to see.


Hickman® line – this is a tube that is
inserted by a small operation into
a vein near your heart. All your
liquid chemotherapy will go
through this and you can have
blood tests and transfusions
through it. So no more needles!

All the questions answered

We have been given a book called Cancer Cakes and Chemotherapy, you can get this on line, we have read it and have been through most of it already.

www.clicsargent.org.uk/Publicationsresources/CLICSargentpublications/main_content/chemocakescancer.pdf

Any problems down loading please contact me, don't know what I can do about it but it sounds good.

Some Good News

Today we got the results of Lewis's bone marrow op on Tuesday, the first time he was tested he had 5% and now there is now no trace in his bone marrow and he is in remission for that. Lets hope he is beating this cancer and the rest of his body is doing the same as the bone marrow.

This was only a small part of the Cancer so we still have a long way to go.

More Treatment

Tuesday mum and Lew got up early and were out by 7am on the way to Southampton for more Chemo. When they got there Lew was seen by the Doctors and ENT (Ears nose and throat) specialist. He put a camera up Lewis's nose to see if he could find a reason for his funny voice.

Then he had two procedures, a Lumber puncher and Bone marrow taken again. This took half hour or so, mum went to get a coffee. Lewis woke up and had his baguette, he is always hungry after an op.

He had his bloods done and his Platelets are only 76 which is low so we need to keep an eye on them. I will do a blood lesson in my next post for anyone who wants to know about them.

Time was moving on and before they knew it, it was 3-30pm, Lewis was set up for his Chemo, it has now changed and he was given Cyclophosphamide 'don't ask'. He was also given Cytarabine and will have to have that for 4 days a week for 4 weeks. He is also having Mercaptopurine everyday. All the drugs are part of the Chemo and all treat his Cancer.

He has been cutting down on the steroids and seems to be a bit happier and not eating as much. His torrets has gone.

Today we had a visit from the children's nurse to give him his Cytarabine but she had problems so he had to go up to the hospital to have it. She will be back tomorrow.

Lewis was off school today because yesterday was a very long day and it takes it out of him, also the drugs make him tired.

My Dad has started his training for the 10k run www.bupa10k.blogspot.com