Saturday 31 January 2009

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 30 January 2009

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 27 January 2009

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.

Saturday 24 January 2009

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.

Thursday 22 January 2009

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.

Wednesday 21 January 2009

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

Tuesday 20 January 2009

Monday 19 January 2009

Weekend

Well the weekend went well, Lewis managed to get out to his friends for a birthday party and was out for five and a half hours, he came back smile on his face which was nice to see. He was ready for more food when he got back and the chicken curry came out. He then went to bed for the night.

Sunday was time to recover and with the odd torrets outburst. Battles to get him to take him medication as normal, cant wait till the sodium tablets have ended. Lewis even managed to eat his meat at dinner time, without being asked. He finally got to bed at 10pm as he had plenty of sleep during the day. NOT FOR LONG I was woken up at 1am by the sound of Lewis stabbing the cover film of a chicken curry before putting it into the microwave, we sat up watching Family Guy while Lewis eat his curry and got back to bed at 1-30am.

Monday Lewis managed a full day at school, that curry gave him loads of energy. Early to bed tonight as tomorrow is a long day at Southampton in Piam Brown ward for Chemo and other things, will tell you about them tomorrow.

Thank you for everyone who has sponsored me so far, still not enough to shave off my hair so keep it coming please. I will start training tomorrow for the BUPA 10k RUN. I feel another blog coming on.

Dad http://bupa10k.blogspot.com/

Thursday 15 January 2009

Lewis had his Vincristine and Doxorubicin chemo yesterday at Piam Brown ward, after he wanted a cheese burger from the Burger King inside the hospital. We got home at 5pm in time to feed him again. As normal the battle to give the medication took place.

Today Lewis has had a day off school to recover, he is Zonked out.


We have just started to lower his Steroids so we hope he will start to come back to normal soon as the food bills are massive. The Steroids make him eat a lot more than normal, Last night he had chicken curry at 9-30pm and made it through to the morning without eating again. He is on about 5 meals a day.

He has mood swings and is like Jekyll and Hyde one minute he wants to kill you and the next he wants cuddles. Don't cross some one on steroids you never know what one of them you will get.

Lewis has a bit of a cough so we hope it doesn't hang around. His bloods were OK yesterday except platletts were slightly low and his temperature is OK so fingers crossed.

Wednesday 14 January 2009


The Piam Brown Ward is the Wessex Paediatric Oncology Centre - based at Southampton General Hospital, treating all types of childhood cancer in the age range of a day old to eighteen years of age. The unit has ten in-patient beds and a day ward area. Leukaemia is the most common type of childhood cancer, accounting for approximately one-third of new patients each year. On average the unit receives 60 to 80 new patients each year, whilst caring for approximately 100 to 150 patients on treatment at any one time. The unit covers the whole of the Wessex region - stretching from the Isle of Wight, Dorchester, Brighton and on past Basingstoke and includes the Channel Islands.

For more details take a look at their webpage by clicking http://freespace.virgin.net/shelton.hines/piambrown2.htm

Tuesday 13 January 2009

Dads Mad


Dad has just signed up for the BUPA London 10k run, all in the name of charity.

New Home for the snails

Brian and Sally the snails have now moved to their new home, they now live in Lewis's classroom at school. We hope they will both be happy there.

Lewis is back to school but only managing to do half days, it was hard enough for him to do a full day when he was well LOL

Yesterday Lewis had an injection called Asparaginase this is injected into the muscle, this was done at Basingstoke hospital. He has some in Basingstoke and some in Southampton. I will put some details of the Piam Brown ward on here tomorrow.

Tomorrow Lewis has to go upto the PB ward for his Chemo, Thats where he has Daunorubicin. That's what kills off the cells.

Lewis has his blood checked to make sure he is staying healthy, yesterday his blood count was really good. We hope it will stay like that.

Please help us http://www.justgiving.com/markedgson
You never know if you will need it one day, we hope you dont so please help others.

Saturday 10 January 2009

Fund Raising

My Dad is going to have his head shaved for charity and would like you to help him, please click on the link if you would like to help.

http://www.justgiving.com/markedgson

All money raised off line will also be added to the total. Please visit back to see how he is doing.

We will take a video of the head shave, my other brothers Ben and Jamie will also join in and will be raising money too.

Lewis back at school

Thursday Lewis came back to school, everyone asking loads of questions. On Friday he only made it half way through the day and had to go home to sleep. He has started to eat everything all hours of the day, this is due to the steroids that he takes with his Chemo.

The snails have got a new home at the school and will be going on Tuesday, at least he can still see them.

I will post some photos this weekend.

Thursday 8 January 2009

African Land Snails

Hi, Lewis has 2 LARGE African land snails with a tank to live in. They are very easy to keep and don't need cleaning out too often. The eat cucumber and need a small spray of water every few days.

Lewis is not able to keep these now and they require a good home. If you would like them please contact us by email liaedgson@hotmail.co.uk or ask Me or Lewis at school, you must ask your parents first.

Tuesday 6 January 2009

Back to School

Today was the day we went back to school. Mr Howe told yr 5 and 6 about Lewis.

Lewis, Mum and Dad have been to the hospital today, up at 6am and get to Southampton for 8am. First he had a lumber puncher, that's where they take fluid from the spine (a small operation) and this afternoon he had another dose of Chemotherapy (an injection over 1 hour of a chemical into the body)

Lewis also had a blood test to make sure his immune system is ok. We have to keep a record of all the tests to see how he's doing. He has been given more drugs to take, he now has 10 tablets twice a day.

Our brother Ben and his girlfriend Kelly looked after the dogs.

Lewis has to have an injection on Monday at Basingstoke hospital and Chemo again on the Wednesday in Southampton. We think Lewis will be back at school very soon and is looking forward to seeing his friends again.

Lewis says "THANKYOU" for all the cards and gifts you have sent.

Please leave a message for him on hear if you want to.

Sunday 4 January 2009

All about lymphoblastic Lymphoma

Lymphoblastic lymphoma is a very rare form of non-Hodgkin lymphoma in adults, accounting for less than 3 in 100 cases overall. However, it accounts for more than 1 in 3 of all cases occurring in children and teenagers. It more commonly affects males than females. It may develop from either T- or B-lymphocytes, but in 4 out of 5 cases, the T-lymphocytes are affected.

Lymphoblastic lymphoma is very similar to the condition acute lymphoblastic leukaemia (ALL). In ALL, the abnormal lymphocytes are mainly in the blood and bone marrow, whereas in lymphoblastic lymphoma they are generally in the lymph nodes or thymus gland. However, they may also affect the bone marrow or other organs such as the liver and kidneys. The two conditions are often treated in very similar ways.

Causes

The causes of lymphoblastic lymphoma are unknown. Lymphoblastic lymphoma, like other cancers, is not infectious and cannot be passed on to other people.

Signs and symptoms

The first sign of the condition is often a painless swelling in the neck, armpit or groin, caused by enlarged lymph nodes. The thymus gland, or lymph nodes deep within the chest (the mediastinal lymph nodes), are also often affected. Sometimes more than one group of nodes is affected. The lymphoma may spread to involve various organs in the body, such as the liver, spleen, bone marrow, skin, the testicles and the brain. Some people experience a loss of appetite and tiredness.

Other symptoms may include night sweats, unexplained high temperatures, and weight loss. These are known as B symptoms.

How it is diagnosed

The diagnosis is made by removing some of the affected tissue and examining the cells under a microscope (biopsy). You will be referred to a surgeon for this procedure. It is a very small operation and may be done under local or general anaesthetic.
Additional tests, including blood tests, x-rays, scans, a lumbar puncture to examine the cerebrospinal fluid (which protects your brain and spinal cord), and bone marrow samples, are then used to get more information about the type of lymphoma and how far it has spread in the body. This information is used to help decide which treatment is most appropriate for you.

Staging and grading

Staging

The stage of non-Hodgkin lymphoma describes how many groups of lymph nodes are affected, where they are in the body, and whether other organs, such as the bone marrow or liver, are affected.
Stage 1 The lymphoma is only in one group of lymph nodes, in one particular area of the body.
Stage 2 More than one group of lymph nodes is involved, but all the involved nodes are contained within either the upper half or the lower half of the body. The upper half of the body is above the sheet of muscle underneath the lungs (the diaphragm), and the lower half is below the diaphragm.
Stage 3 Lymphoma is present in lymph nodes in both the upper and lower parts of the body (ie in lymph nodes both above and below the diaphragm). The spleen is considered as a lymph node in this staging system.
Stage 4 The lymphoma has spread beyond lymph nodes to other lymphatic organs – for example, to sites such as the bone marrow, liver or lungs.
The stage usually includes the letter A or B, which describes whether the B symptoms are present or not (eg stage 2B). Sometimes the lymphoma can start in areas outside the lymph nodes, and this is represented by the letter E, which stands for extranodal (eg stage 3AE).

Grading

For practical purposes, non-Hodgkin lymphomas are also divided into two groups: low- and high-grade. Low-grade lymphomas are usually slow-growing, and high-grade lymphomas tend to grow more quickly.
Lymphoblastic lymphoma is a high-grade lymphoma. This means that it is fast-growing and needs prompt treatment.

Treatment

Chemotherapy

Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. The type of chemotherapy used is similar to that used for acute lymphoblastic leukaemia. Lymphoblastic lymphoma is usually treated more intensively than other types of lymphoma. In the initial phase of treatment, called the induction phase, multiple chemotherapy drugs are given weekly, usually for 10 weeks.

Following this early phase of treatment, high-dose chemotherapy may be considered (see below), or else less intense maintenance doses of chemotherapy are given over several months.
As there is a risk of this type of lymphoma spreading to the cerebrospinal fluid, chemotherapy drugs are also usually injected into the spine (intrathecal chemotherapy). This treatment is used if lymphoma cells have been detected here, or as a preventative measure against future spread to the cerebrospinal fluid.

Radiotherapy

Radiotherapy is the use of high-energy rays to destroy cancer cells, while doing as little harm as possible to the healthy cells. Sometimes, chemotherapy is combined with radiotherapy to the brain and spine, if lymphoma cells are present in the cerebrospinal fluid.
High-dose treatment with stem cell support

High-dose chemotherapy with bone marrow or stem cell infusion may be considered for patients with lymphoblastic lymphoma, after the initial chemotherapy has been completed. This type of treatment involves very intensive chemotherapy and sometimes radiotherapy.
As the side effects can be severe, some types of high-dose treatment are not given to people over the age of 45–50 and others can be given to people of up to 65 years if they are fit enough. This is because the intensity of the treatment increases the risks of serious side effects for people older than this.

Steroid therapy

Steroids are drugs which are often given with chemotherapy to help treat lymphomas. They also help you to feel better and can reduce feelings of sickness.

Back in for tests

On Fridays Lewis has to go back to the Piam Brown ward for Blood tests to check if his blood is ok and thankfully for now it's fine!!! Lewis stayed there for the day with our parents.

On Saturday Kurtis one of Lewis' friends came round for the day. Kurtis had a few questions to ask Lewis but that was ok. He went home at four o'clock and then Lewis had to take all his pills.

Thursday 1 January 2009

Lots going on

Yesterday Auntie Zanni came to visit Lewis in the hospital. This morning Lewis had a Lumber Puncture before Sharon, Steve, Ryan and Hannah came to visit. Ryan and Hannah came into the Teenage room with Lewis and me while the adults went into the other adults lounge. Around four o'clock they went home, Dad and me went home later on after Lewis's Chemotherapy. We were told that Lewis would be able to come home tomorrow.

It's new years eve and Lewis is going to come home this afternoon (Yippee!). When Lewis got home dad had to go off to go and pick up Ben(our other older brother) and Kelly(Ben's girlfriend) from the airport as they had just been to California. Ben didn't know about Lewis until he came home. A while later they arrived here and gave Lewis and me loads of sweets!!!!!!