Race for life 2013

Megan Rees is fundraising for Cancer Research UK

Our Niece will be running in Race for Life on 2nd June. If Alice is well and weather permitting we may be able to join her ... walking not running.

Please support her and the charity. Cancer hasn't just effected our lives and Alice is not not the only member of our extended family currently having to fight the disease.

 Thanksxxx

20th to 26th May - DELAYED INTENSIFICATION - Week 18

20th May to 26th May

Well we are back in England. I was quite excited about flying back until I realised it was only me and Mummy coming back. I had to leave Daddy in Gibraltar. It was a bit strange coming back too because we had to get a taxi to Nana's house and when we got there Nana and grandad weren't. Mummy and I had to sleep in their house without them.

On Tuesday some nurses came to Nana's house to take some of my blood because I was going to start them next bit of my treatment and in case my blood wasn't any better than last week they wanted to check it was OK. After they'd gone Mummy and I walked into the village. I tried to walk as far as I could and there were lots of snails and interesting things to look at on our walk.

 

When Nana and Grandad got back home (I was asleep from my long walk)they were with my Auntie and Mummy had packed some of our things so that we could go and stay at Aunty's house. I'm starting the Delayed Intensification and we are staying close to the hospital so I don't have to travel so far everyday.

On Wednesday when I woke up I played in my Aunty's garden (mostly chasing their cat Paddy). At the hospital we found out my blood was doing well and that I was having a little sleep and a lumber puncture. We weren't too long and Uncle came to collect us as normal after work. I wasn't happy because they had put the NG tube in my nose again and I don't like it. When I got to my Aunty's house my big cousin had to go and play cricket and I got to watch DVD's with my other cousin.

Thursday I also had to go into hospital and have 2 different medicines in my wiggles but I didn't take very long at all and I got to go to the Armouries to see my elephant in armour. And I saw a sword fight. The weather wasn't so nice so I sat on the sofa when I got home. I also felt a bit sick.

Friday I had to go to the hospital AGAIN. They gave me an injection in my leg. Auntie came and collected me because I was very tired and it was raining. My Biggest cousin had an exam in the morning when I was at the hospital so she watched DVD's with in in the afternoon whilst it was too wet to play outside. I felt very tired and sick and not very happy. Auntie took me home in her big grey car after tea.

Saturday at Nana's house it was nice and sunny and I played in the garden. I had some lunch and walked all the way to the library. I chose my books but was too tired to walk up the hill to their house. I felt better than before but was still tired and felt a bit sick.

Sunday I started to feel better again and I went to Sunday School and saw my new friends. We played with bubbles after church. I ate lots of lunch, Yorkshire puddings and chicken drumsticks and after lunch we went for a little drive and a walk. I like the sun shine a lot!

Mum Says: It never rains but it pours. Unfortunately whilst I was in Gibraltar my Aunt died and our flights coincided with her funeral so we arrived to an empty house and a bit of a strange mix of emotions. I know we are now on the last part of the treatment which will mean staying long term in the UK. I also know we are facing a difficult time as Alice is already getting worse again and withdrawn more like the start of her treatment. I think every side effect they have listed we have had to a greater or lesser extent. mostly mild side effects. I have to be thankful for that. Unfortunately she is blaming everything on her NG tube including hay-fever which brings it's own set of problems. Although she has her down moments and is obviously getting fed up and is ready to go home and will tell me that she will stay sick and stay at home instead of coming to UK for treatment. She also has her up times and is still smiling. 

Thank God for family and their support I couldn't even begin to imagine doing any of this without them!

4th to 19 th May - INTERIM MAINTENANCE - Weeks 16 & 17

4th to 19th May

Well we made it home to Gibraltar and to my house and my toys and my family! It is always exciting to see Joe and Toni and Daddy. I made Daddy do everything for me when I got home and I went out on my bike and played and played and played.

My blood wasn't very well so I had to be careful of infections so I didn't have a big party or anything when I got home like last time with the family. Nana and Alfred came to lunch on Sunday and that was really nice, Toni had to work but I had spent Saturday with her and she had come to collect me from the airport with Daddy.

On Monday I went to visit the hospital to arrange a blood test and to see the Doctors. It was really nice to see my friends again at Rainbow Ward. We had a quiet day at home so that Mummy could start sorting out the house. Daddy and Toni had painted the lounge for Mummy as a surprise. I think she was very surprised.

On Tuesday I woke up with a swollen face so Mummy and Daddy had to take me back to Rainbow Ward. It wasn't quite as fun to go back this time and I had to have jelly on my face to see what the gland looked like and blood tests. I was sent home with antibiotics and instructions from the Doctor to come back if it got worse. ... It got worse!

Tuesday night/ Wednesday morning my temperature went up and my face got fatter and I got worse so Mummy and Daddy took me back early in the morning to see the Doctor. I had to have more blood tests and IV antibiotics so that meant I was in Hospital until Saturday Morning. Not the holiday we'd planned. Although I had visitors like Nana and Alfred, Daddy, Joe and Toni and my Uncle came in his army clothes and bought me sweeties.

When I got out of hospital I went to my Nana's house for tea and on Sunday my cousin came to visit and we had a party for our lunch with Pizza and crisps and sweeties. That was fun. My other cousin came to play on Monday, she ran around so much with our cat that the cat slept for a long time after she went home. On Tuesday my blood was not very well so I had to stay at home most of the time.  

I also went to Nana's house and played all day with her and Alfred on Friday so Mummy and Daddy could go out for lunch or something, with out me!

Mummy, Daddy and Joe did take me to the beach for a little while in the morning because it was nice and sunny and my Aunties and Uncles came with my cousin for the afternoon on Sunday.

Mum Says: Well I suppose this visit just goes to show that when we try to plan to far ahead with Alice like she is at the moment it will come back and bite us on the bum! We will have to get used to these little set backs/upsets over the next couple of years. So I didn't manage to see even half the people I wanted to and I am sorry to anyone I was hoping to see and just didn't get to. I don't think many people even knew we had arrived and we left so quickly because of the next stage of her treatment starting! It was nice to see the few people we did. And great to see the family. It was a real surprise to come back to a painted lounge and I had plenty of time to start sorting out the house and things which I had put off because of Christmas and obviously by May were long overdue! I did manage to spend some time with both Joe and Toni individually whilst I was home which was great as well as going out with Gareth!

 

22nd April to 3rd May - INTERIM MAINTENANCE - Weeks 14 & 15

22nd April to 3rd May

Well I have had a bit of an exciting time because I've had a week off from hospital and I got to go to a Birthday Party! My little cousin was 2. I got to go to her house and I helped her open her presents - even though she probably didn't really need my help. I got to play with her new toys and her friends, we made pizza for our tea and decorated biscuits, danced around and my Uncle made a yellow birthday cake just like my cousin had asked for. I had so much fun and I was very tired at the end of the day!

I missed Surestart so that I could go to the party but I got to go to the library and Sunday school like normal. I almost stayed at Sunday school on my own but I decided in the end that Mummy should stay. I played in Grandad's garden as much as possible and Mummy seemed to be busy sorting out my clothes and things and my toys too which was a bit puzzling to me.

 

On Monday my Uncle took me to the hospital with Mummy for and 'Echocardiogram' to look at my heart and test it and measure it so that they can see if the drugs I have later on affect my heart as they might. They put jelly on my tummy and chest and neck to see everything, Mummy said it was like they did to her when I was in her tummy. I didn't really like but my Uncle came in with me as well as Mummy and I think they thought it was quite interesting.

On Wednesday when I went to the hospital it was the last time I had to have my 'gobulins' (IVIG) and the Doctor told Mummy and I that I could got on holiday to Gibraltar and the lady from the Pharmacy bought all my medicines for my holiday and explained that I will have a week off and no medicines except for antibiotics for a week, that is very exciting, not only am I going home but I'm not going to have medicine! The hospital took a long time but Mummy and I were too happy to care.

When we got home Mummy had to arrange our flights with Gibraltar and pack, although I think she had packed lots just in case already. We did have a bit of a problem on Thursday as I was playing in the garden Mummy fell over and hurt her ankle. Grandad took her to hospital in the car and I stayed with my Auntie and played with EVERY toy in their house and then we played in the garden. Mummy didn't even get a bandage on her ankle but had ice on it and put it up on the sofa.

We had to get a taxi very early on Friday morning and I woke up to go on the aeroplane, it was very very exciting to get up in the dark and we even had breakfast at the airport before the flight. Hurray! I did have to go to sleep on the plane because I was very tired by then and when we arrived at Malaga Daddy and Toni were waiting for me. I shouted all through the airport Daddy I'm coming!  

Mum Says: It has been nice for normality to set in ... well as normal as things can be for us at the moment. It was lovely to be able to celebrate my Niece's 2nd Birthday with her and for Alice to be doing something normal! I did suspect when we went to the hospital that Alice's blood counts were going to be a little low, which they were, but to still be able to go home for 2 weeks was a relief and made both of us really happy. I was rather concerned when I fell in the garden and hurt my ankle as I was sure I'd done something pretty bad as it swelled immediately and my toes were numb. Fortunately it was a bad sprain and bruising and I took plenty of pain killers put on a bandaged and ignored to Doctors 'rest' and got on the flight ...well I can rest it in Gib' :)

Treatment Overview

I have tried to look up some information for people to give them an idea of things that Alice and I talk about as totally normal. It is funny how quickly you take for granted Doctors language.

This website has many booklets that we were given initially. The hospital has more of their own.
http://leukaemialymphomaresearch.org.uk/information/childhood-leukaemia
This is the first of many booklets I was given, it has been passed around the family
http://leukaemialymphomaresearch.org.uk/sites/default/files/chall_ukall_2011may_2012_1.pdf
This is a fantastic book which explains to the child what the technical terms doctor’s use actually mean.
http://leukaemialymphomaresearch.org.uk/sites/default/files/wigglys_world_aug_2011.pdf
This give a general overview of how we have to deal with Alice’s diet as we have to assume she is neutropenic throughout her treatment as it can happen very quickly and between hospital visits.
http://leukaemialymphomaresearch.org.uk/sites/default/files/dapn_jan_2012_0.pdf

I have half a forest worth of paper telling me about how to keep her active, from the physiotherapist, what we can feed her, from the dieticians. What the side effects of the drugs might be, from the pharmacist. I have a folder of consent forms and flow charts explaining treatment.

We then have all of Alice's charts for taking her medicines for the different stages of treatment, her behaviour charts, charts for drinking enough and charts for rewarding activity. 
I haven't bothered with eating charts as she has cravings that she cannot seem to control, such as eating potato waffles 3 times a day for the past week or when she was first at my parents, cheesy mashed potato for breakfast lunch and dinner. Not to mention the fact she is either starving or not eating at all. The fact that I manage to get her to sit at the dinner table once a day with us whether it be for 2 minutes or for an entire meal is in itself a small win every day for us.  Her sense of smells seems heightened and she will tell you if you need a shower and this also applies to food for example the smell of a sweet pudding cooking stopped her from coming into the dining room to eat.

Her sleep patterns have changed and we are back to having a nap during the day most days. She has to wait for an hour after eating to take her evening chemotherapy (including milk drinks) which means timing dinner so she can get into the bath and bed at a reasonable time; we fail at least once a week to do this. I have tried to give her the medicine when she has already been to sleep but that ends with tantrums and trauma from/to both mother and child. I also have nights when she isn’t happy in her own bed and wants my reassurance. She did think that there was a loop hole in her sticker chart ... I spent the night in my own bed ... by getting me to sleep with her for the night. I like her thinking, it worries me that at 3 she is already able to pick up on these things.

Her treatment is split into different stages.

Alice is on Regimen A which thankfully is the least intensive and for low risk patients, Alice being a girl under the age of 5 is in the highest survival rate group.

Induction (weeks 1-5) for 5 weeks, we started as soon as she had her diagnosis.  So far it has been the worst part so far as she was very ill and withdrawn.

Consolidation (weeks 6-8) for 3 weeks, We had a week’s break at this point as she was in hospital on antibiotics and had a blood transfusion following a break we had the next  3 weeks of treatment. Adding a week to our time in UK.

Interim Maintenance (weeks 9-17) of 9 weeks, which is where we are currently in our programme. This involves alternate weeks in the hospital having treatment and afforded us the opportunity to go home for a week at Easter. We are hoping to get another 2 weeks at home at the end of this stage as we have 1 week of oral chemotherapy and a week off treatment before the next stage

Delayed Intensification (Weeks 18-24) is 7 weeks and is when they get as many different types of chemotherapy into her as possible or so it seems at the moment. It is the part I am dreading the most as some of the drugs can be nasty we will have to wait and see.

Finally we have Maintenance which is the great unknown to us at the moment; she will have oral chemotherapy and monthly injections  with steroids and 12 weekly lumber punctures. Life should run pretty smoothly and her current end date is in March 2015, if she were a boy we'd have to add another year to that, there is always something to be thankful for!