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!

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.