Maintenance - Week 52

Our little lost girl GOSH

This time last year we were in Great Ormond Street Hospital trying at take in the fact that our baby girl had leukaemia, we are now on week 52 of treatment and it seems like it happened a very long time ago, to someone else and yesterday all at the same time. 

When Alice went for her bone marrow aspiration on 16^th January 2013 I think I already knew what they would tell me. When we were in recovery they told our nurse that they had to try twice to get a sample (that couldn’t be a good sign).

I can picture the details of the room we were in when we were given the news, but not the person telling us. I don’t know how long we were with the consultant for but the shock of what he was telling us was deafening. There was a sense of relief, we knew what was wrong. I very quickly needed reassurance, she will start school? She will grow normally? She will have a future, children a normal life after this? (There has to be an after this)

Same hair cut as Daddy!

Gareth only heard his baby girl had cancer; leukaemia and that she would loose her beautiful dark hair because of the treatment (Which didn't bother him when it happened)

The speed which our lives changed was breathtaking, test, diagnoses and chemotherapy all in one day.

Initially answering calls from the family and telling them was easy. It was like a dream. Telling the children back in Gibraltar over the phone was the point at which it became real, especially Toni who’s immediate reaction was to burst into tears made them both so far away, no Mum there to hug them, comfort them, just repeating down the phone, “She will be alright, of course she will” (She has to be)

I suppose there are various stages to coming to terms with any life changing news. Initially I was too numb to feel anything. I had to stay positive and strong. I needed to read every piece of literature handed to me (because that is how you beat cancer). I needed to sort out every practicality (because that is how to beat cancer) and I had to hand over her care to complete strangers, do anything they told me was best for my child even if she screamed and fought me (because that is how you beat cancer)

Intensification summer 2013

I think Gareth and Dad were really the only two people who fully took in the diagnosis and how seriously ill our child actually was. Gareth just wanted to wrap her up and protect her from all the hurt, sadness and pain he knew the treatment would bring, he couldn’t be away from her for any length of time (neither of us could)

I felt a total sense of isolation from the world, from friends and family. Physically we were isolated at diagnosis because of the parvovirus, so there were no parents going through the same thing as us to talk to. I did however find out very quickly that we are not alone in all this, never have been.

There was a real sense of grief in those first few days as our child completely withdrew from us, she refused to eat, drink, speak or play. She was unhappy and scared. The trauma of having canulars which only lasted hours, if she was lucky a couple of days and then an NG tube to keep fluids up as all chances of canular access was given up on. We felt robbed of everything we knew.

Not such a happy girl today

Once out of hospital our happy go lucky fiercely independent 3 year old turned into a limpet, I couldn’t move without her attached to me, she wanted to sleep in my bed, sit on my lap for dinner even me going for a shower was greeted with tears and a fear I might not come back. Daddy had gone back to Gibraltar and left her in UK why not Mummy too?

I think being apart caused some resentment between Gareth and I. For me he was getting on with a normal life, work, shopping, birthdays (I missed Joe’s 11^th birthday) friends visiting, going out for meals and just having the other 2 children with him. For him, I was with our little girl everyday I saw her both on good days and bad. I was her protector. It should have been him I called when things got bad but instead it was my Mum, Dad, Brother and Sister there for us.

In reality we were both struggling to come to term with something that may or may not have been easier to do together.

Once we were at Leeds and going to the day clinic with other families in the same situation as us. I was able to see children on maintenance with school uniforms proud to have done a full week at school. One day I remember there was a family coming in for the last lumber puncture of maintenance, the families excitement was contagious, there is light at the end of the tunnel. Being able to chat with other Mums who were also struggling with cravings, sleepless nights, NG Tubes, weight gain, loss, gain, loss and mood swings was invaluable as well as the staffs understanding and support

I think Gareth had more time to be sad and to grasp what was happening. I don’t think it was until we started maintenance that I actually accepted what had happened in January. It was like I’d held my breath, the worst, we hoped, was over. I remember one night sobbing, my baby has cancer, I could have lost her.  Now she is getting better the guilt set in, what could I have done differently? Was it something I did when I was pregnant? Why didn’t I see it coming? If we hadn’t have lived in Gibraltar? (our family could have stayed together)

Gareth and I never really got angry about it, why our child? It just was.  As for our little girl the rages she flew into at the beginning of maintenance makes me believe she was furious! With us? The situation? It passed and she seem fine now. Screaming, Fighting, kicking and biting seem to have worked for Alice. Perhaps we should all try it?

Armed with a new vocabulary and out look on life we entered maintenance and are home, we spent  most of the past year saying, “maintenance will be easier”, and “maintenance will be better.” It is true, to some extent. We are now used to living with the ‘rules’. Chemotherapy is part of our bed time routine, we know what to expect when steroid cravings kick in and have got some of Alice’s less positive behaviours under control, sometimes. Our Mantra has become “Live a normal life”

Still mostly we feel lucky, lucky she is young, lucky we have such supportive family and friends, lucky not to have had to live in a hotel room. Lucky that despite everything we have a happy, playful little girl who seems to be taking everything in her stride. She will get better there is no other option, never has been!

Alice playing with my make-up!

SISTERS! - Maintenance - Week 48

16th to  22nd December

We've had to keep my week quiet, I've not been able to go to school or anything fun, Mummy and Daddy want me well for Christmas so Joe took my Christmas cards to all my friends at school and I stayed home.

On Wednesday I had to go to hospital for my goblins (IVIG) because I have the Parvovirus again, that is why my blood has been so poorly. The only good thing has been not taking my brown medicine everyday.

Again it took a LONG time at hospital and it didn't help that my blood didn't want to come out for all the tests they wanted to take. The Doctor had to put the end of the bed up high so all my blood rushed to my head and then he wanted me to pretend like I was doing a big poo on the toilet. He looked very funny. But it did make my blood come out nice and easily.

After the hospital we ran home to get changed into my Tinkerbell Dress and silver shoes for my cousins 4th birthday party, last year I missed it because I was in hospital having blood, this year we were late. Next year maybe I'll be there for the whole party. I didn't really feel very well at the party and I just wanted to go home to bed. But it was nice to see my cousin and give her the birthday present we had bought her.

My best day though this week was Friday as my big sister came home from University! We had to wait all day for her aeroplane, in the end I decided the only way to make it come quick enough was to go to bed and sleep. It worked when I woke up it was time to go and collect her! And to make it even better I got to have Chinese noodles and sweet and sour sauce from the shop for tea!

At the moment Toni is my very best favourite person, unless her boyfriend is here then I like him better!

On Sunday my Auntie called to say my Cousin has chicken pox and that we wont be able to see her over Christmas. That made us all sad because we wanted to have the whole family together and now AGAIN someone would be missing.

 Mum Says: We are so relieved to find out that Alice has the Parvovirus again, as they other option was a relapse and that would have been devastating. We know what to expect from the Parvovirus and are able to relax a bit before Christmas. We are finally feeling ready for Christmas, no matter how ready we were with the food shopping and presents someone was missing and now Toni is home it all feels better. This is the first time we have all been together in one house since May, unfortunately My Niece has Chicken Pox and cannot be with Alice (Chicken Pox being life threatening to Alice at the moment) So we will still not manage a Christmas with the whole family!

20th to 22nd March - INTERIM MAINTENANCE - Week 9

20th March to 22nd March

When I went to the Doctors on Wednesday for my medicine it was very busy and took a long time, but it was a very good day because my blood was very well and we were told that I could go home for a holiday! They had to give me a nasty medicine to take and I don't like it but I decided to be very brave and take it in my mouth.

Nana came with us to the hospital and we got the train home. It was very exciting because I'd never been on a train before.

On Thursday the nurse had to come and put in an NG tube because as soon as I took my medicine it made me sick, it made me very sad and I bit the nurse when she put it in. Mummy wasn't very happy with me for that. My little cousin and Aunty came for lunch and we went to Sure Start to play. That was fun and I forgot all about my tube.

Mummy was very busy making telephone calls and sorting out our flights.

Friday was the the best day because when I woke up there was lots of snow everywhere. I've seen snow but this was the first time there was enough to make a snowman. Mummy and I got out of bed at 7 o'clock in the morning and went out in our pyjamas and snow clothes to make our little snowman.

The problem was that my uncle was snowed in and we had to call a taxi to take us to the train station and he took a long time to get to Nana's house. I got to go on a train and an aeroplane all in one day!

When we got on the aeroplane I found out that one of my sister's friends was on the plane too. That was fun I got to see him and play a lot. 

The journey made me very tired and I fell asleep on the plane. When I woke up I wasn't in Gibraltar I was in Malaga. That made me mad. I wanted to see my Daddy! We had to wait a long time for our bags and then we had to get on a bus. It was better because my sisters friend came with us.

When I got to Gibraltar, at last, Daddy and Joe where there to collect me and Mummy. Daddy bought me noodles from the Chinese and seeing all my toys again was like having Christmas all over again!

 

15th to 23rd February - INDUCTION - Week 5

15th to 23rd February

On Friday Daddy came to visit it was very exciting for me to see him. He came very late in the evening and I had to go to bed because I was too tired to stay awake. I did try very hard

We didn't do very much on our first day together because we were just enjoying being together. Daddy and Mummy took me for a walk but I was tired so we didn't go far.

On Sunday we went to my Aunties house and had lunch. We were having problems with my NG tube and when Mummy manged to get it working I'd drunk so much milk that my stomach was Alkaline not Acid. The nurse did laugh when Mummy told her!

I ws feeling much happier having Daddy with me and I really liked playing with Aunties cat, well trying to at least.

On Monday my Key worker came to Nana's house to see all the grown ups and to talk to them about me and my treatment and when I might be able to go home. The community nurse also came to speak to them about what they do and when we can call them.

By Monday night I'd sarted getting a temperature and I was taken to the hospital in Leeds in Grandads car.

I was told that I would have to stay in for 5 days and have antibiotics. I also had to have a blood transfusion whilst I was there. I didn't get to stay on the ward with the other children with cancer as there was no room, Everyone had decided to visit them! 

The nurses on the ward I was staying on were really nice to me and Daddy came to visit everyday. The Physiotherapist came to see me and to make sure that I can keep active and to help me build my muscles again so I can play and when I go to Gibraltar I can start going to my dance classes!

The Doctors decided to give me a week off from my chemotherapy and it has made me feel so much better. I am much happier and I'm doing lots of walking around the house and playing like the physiotherapist told me. Mummy has made me a sticker chart so that we can see how many times I can walk up the stairs. 

Daddy had to go home on Friday and Aunty came to collect me from the hospital on Saturday. I'm getting used to speaking to my family on skype now and as I feel better now I can play with them!

 Mum Says: I don't know how I could have got this far without my family and my parents particularly their patients has been saintly with both me and Alice! We have invaded their house and taken over their lives which I suspect they thought as we (their childern) were all settled now and unlikley to move back home.
It was however such a releif to have Gareth here and to be able to share Alice with him. It is very tiring to be with her when she is so obviously unhappy.  Again it came as a supprise to me how badly I needed to see him. I did know however that Alice was desperatly missing him and home. We have seen her mood lighten as the steroid dose had been reducing which is heartening. She was knocked for 6 by a cold! and we have spent 5 days in hospital for something I wouldn't even go to the Doctors with normally. What ever the reason for the break it has done her the world of good, she is happier and more active than I've seen her in a long time, since arriving in England maybe. her appitie it still a little strange but I'm now trying to get it under cotroll a bit more and hope that this week we will be able to move ahead with her treatment. Any delay is obviously heart breaking for us as we are now uncertain when we will get home. We are still facing an uncertain future as there are complications with her treatment due to the Parvovirus and gernrally any delays there maybe in the furture but at least she is now feeling a little more like herself and is starting to make jokes and play! It is heart breaking to see her shuffle around like an old lady, to not be able to stand up if she is on the floor and to watch her crawl to use furniture to pull herself up. She has mastered getting up the stairs but can't carry a dolly up with her and hasn't managed to get down stairs yet. She has however this week started planning her life when she gets home and is talking more about everything and everyone and has had me beaming all day!  We are now just going to have to take everyday as it comes and I have stopped looking at the calendar to see if I'll be home for X,Y or Z and will just ahve to keep faith that I will get home soon with Alice.

16th to 24th January - INDUCTION - Week 1

16th - 24th January

I didn't quite know how long I'd be in England or at Great Ormond Street for and I really thought I'd be home soon.

On Wednesday 16th January 2013 I was taken for a small operation called a bone marrow aspiration. The Doctors took alittle bit of my Bone Marrow and looked at it to see why my blood was so poorly.

On that same afternoon the Doctors came to speak to my Mummy and Daddy. I stayed in my room with Nana and Grandad. When Mummy and Daddy had spoken to the Doctor they were very sad and cried because the Doctor had told them I have something called Leukaemia, ALL, Acute lymphoblastic Leukaemia, which means that I have a kind of cancer in my blood. That is what had been making my blood so poorly!

They also told me that it is very easy to treat and nearly all children who get it get better. It did mean that I would have to stay in England for a long time and I would probably feel very sick for a long time because of the drugs called Chemotherapy that the Doctors would have to give me.

Nana and Grandad stayed with us in London for the first few days to help Mummy and Daddy and find out what would be happening as we had decided that it would be better to move to Nana and Grandads house in Yorkshire and have my treatment in Leeds.

When Nana and Grandad left it was much quieter at the hospital but the Doctors still did lots of test and took my blood very often. I didn't like having drips and being caught so that I had to stay in bed most of the time. I started with 3 types of medicine and they all tasted nasty! I had to eat chocolate or clean my teeth to take the taste away.

Mummy had a bed in my room with me and I had lots of toys and books. My cousin loaned me a DVD player to use when i was in hospital but I mostly watched Toy Story 3 on the television in my room or played games on the same television!

A lady came to play with me and to paint and make things. One day my bed was so full of glitter that Mummy had to change my Sheets and blankets!

Mostly I just want to go home.

I had to have a tube put in my nose to my tummy so that I could have water and milk. I really didn't like it and wouldn't talk or eat or drink whilst I had it. I did wear a scarf to make my neck feel better. I was very sad and scared whilst I had it in and it made Mummy and Daddy very sad too.

The Doctors did take it out because I wanted to go home so much that I promised to eat and drink and take my medicine.

I had a little operation and had something called a port-a-cath fitted. This is so they can give me drugs and chemotherapy without having to use cannula's in a vein. They used something called wigglies to put medicine and they stick out of my body, but when I leave the hospital they are taken out and it looks like there is nothing in me.

Mummy told me that whilst I was in Great Ormond Street that my Doctor from Gibraltar came to visit me, I was asleep.

I was in the hospital for 10 days and lots of people came to visit and play with me. The people from Radio Lollipop came and blew bubbles for me and played Guess Who, we made planes. A Lady came and did sticking and painting with me so Mummy and Daddy could have a break and go for lunch. I made friends with the little girl in the room next door, we weren't able to leave our rooms so we drew pictures for each other on the window between our rooms. My favourite visitor was my friend lady who who came to play even when I was very sad and not talking.. She even gave me a toy horse when I was very ill and wanted to be left alone. she was my favourite person at GOSH.

Mum Says: It is very difficult to put into words how I felt and exactly what it was like. I know that we had to tell people what the diagnosis was and when I sent a message to people I couldn't read their replys right away. I was panicking in Costa Coffee as they were comimg through so fast and it made it all too real. We were kind of in a dream world, having to absorb vast amounts of information and then deal with a very unhappy 3 year old. She obviously knew something was happening but not quite what and she still hasn't fully grasped what is happening to her. Everyone has been so supportive and helpful and understanding that we have just been overwhelmed with everyones kindness, in Gibraltar the support that we've had and from the medical staff at GOSH not to mention the way our families have come together to support us. But Alice being sad is the over whelming memory. She has always been such a happy healthy child and we were suddenly in one afternoon robbed of that. But as parents we are unable to wallow and feel sorry for what we have lost we now have the job of getting her through this whole experiance, healthy, happy and as Alice as possible.

I'm a puzzle

I carried on having blood tests everyweek on a Monday. Some got better but mostly they got worse. 

The week before Christmas I think about 17th December I was very ill again and had to have another blood transfusion and some immunoglobulin. 

I had been tested for a virus called the Parvovirus and it was positive,but I just wasn't managing to fight it off myself. At Christmas we had to stay away from lots of people and shops because I was suffering from Neutropenia and it meant that I couldn't fight infections.


The Doctors were puzzled by what was happening to me. I carried on having blood tests every Monday with my friend Audrey at the hospital.

Looking for a carrot for Rudolf

I had fun at Christmas with my family and I got a new scooter!

  

Kim Says:  We had decided to make Christmas really quiet and special this year. Although we couldn't have lots of people over we managed to go out a little bit everyday when it was quiet with Alice and her scooter or her bike. The other children did all they could to help us make Christmas great and after all the worry it was a relief to have something to celebrate! It did look like there was an improvement on New Years Eve which gave us one night of relaxation at least. We knew that the way things were we could be facing a challanging 2013!

December 2012

December 2012

My name is Alice and just before I turned 3 I got very poorly. I was very tired and I kept falling asleep on the sofa. One Saturday at the end of November 2012 I had a high temperature and an ear ache so Mummy took me to the Doctors. She gave me antibiotics to make it better and we all thought that was that.

I didn't get better and Mummy and Daddy had to take me to the hospital later in the week and I was given something called a drip with fluids in and they took blood from me to test. They told us that my blood was very poorly and that I needed a blood transfusion. My red blood cells weren't getting made properly and there weren't enough. It is called anaemia and the Doctors started working hard to find out why my blood was so poorly.

My Birthday was only a couple of days after my blood transfusion but the Doctors said I could go home and I was very happy. My Aunty made me a smarties Birthday cake and we went to my Nana's house with my cousins and my big brother and sister to celebrate.

Mum Says: Seeing Alice so ill was very frightening for us as parents and my eldest daughter particularly was aware of how sick Alice was. We didn't know quite what was going on but had been reassured that they would find out and get to the bottom of it all. The Doctors and nurses were amazing and did everything they could to reassure us. Alice had a lovely Birthday in the end and we were all just glad to have her home. She very nearly didn't make it to 3 years old!

Professional Picture by Ana Vas