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!

England: magic milk and rainy days- Maintenance - Week 51

6th to 12th January

I was very excited to be going to England it is always fun to see my family, shame that we have to go to the hospital too.              

Monday morning Mummy and I were all packed and ready we went to the airport with all our family to say bye bye, I was sad to say bye to Toni but I'm only going to be in England for a week eating nice food and I had new headphones especially to watch films on the aeroplane.

On Tuesday my little cousin came to see me, I was very excited to see her and play. We especially like playing hide-n-seek together and generally getting into trouble. She couldn't stay for dinner though because she had to go to nursery on Wednesday, I was sorry to say good bye as I wont be back again for a long time, hopefully. Y

Wednesday as always was hospital day and it always takes a long time. I had to have a sleep and my goblins (IVIG). I did see lots of people I know and like and my friends the nurses looked after me, I miss them a bit when I'm in Gibraltar, they remember me when I was very sick and had no hair so they are all pleased to see me now, so much better. I like talking to the lady giving me my magic milk, it makes me giggle and tingle, I like it! Mummy says this time I was talking so much and giggling that she thought I wouldn't go to sleep. My Uncle came and took me to the hospital like he used to when I stayed in England and took me back to Nana and Grandad's house. This time my big cousin came to see me at the hospital and it made it more fun. 

After the hospital on Thursday Mummy took me to the supermarket and we bought the same gravy like Grandad has and some other food that I wont eat at home because it's not like Grandads. In the evening my Auntie and cousins came to visit and we all ate dinner together. Again I felt very sad to say good bye.

For a change we actually managed to get a flight home on Friday, which meant we passed Toni at the airport. Whilst I was waiting for my suitcase I saw Toni going to catch the plane. I waved at her and blew lots of kisses. We got to have noodles for dinner. Joe was away for the weekend so it was just Mummy, Daddy and me for a couple of days. Grown ups are a bit boring and I was really pleased when Joe got home from his skiing trip on Sunday!

Mum Says: It is always nice to get home and see my family, we are seeing them regularly because of our trips to Leeds, one silver lining. Alice did well at the hospital and it was great to see people and talk to other people who we know from our last year at the hospital. It was sad to see some of the new patients, you can tell who they are the parents genrally look like deer caught in head lights, because we know what to expect and they really don't. Even insomnia is easy to deal with compared to last year! Alice is getting to the age now that we have tears when she says goodbye to pepole because she really understands what it means. I was pleased that she was so happy to get to UK as there are days when she doesn't want to go back and we have a couple of unsettled nights when she gets back, worring about going back and having to stay longer than expected. I'm sure this will improve as out trips become less stressful and more predictable over the next year!

Happy New Year - Maintenance - Week 50

30th December 2013 to 5th January 2014

We celebrated the start of a new year this week which was sort of fun. The problem has been that I cannot sleep, I am taking my Grumpy minty medicine (steroid) and this month it has completely disrupted my sleep. I cannot sleep at all day or night. We've had problems before but it is normally one night towards the end of my dose, not so bad. 

 

Because I can't sleep and because of chicken pox we have mostly been avoiding people and busy places, especially play grounds and fun places like the cinema. Mummy and I are flying to England next week and Mummy doesn't want me to get sick when I'm there because our visit could be long instead of quick.

I couldn't sleep and because we were at home on our own Mummy and Daddy decided to see the new year in at Casemates, the main square which was lots of fun. I like the band a lot and there were lots of people all dressed up. I also liked the fire works for a bit then they got too loud and bright. When we got home there were still lots of fire works going off and I didn't like it. I still couldn't sleep especially with the noise so I watched a DVD in bed, something Mummy never lets me do.

After New years Mummy and I had to get ready for England and mostly started cleaning, packing and putting the Christmas decorations away. I can't wait for Christmas to come again, I'm excited about going to England and seeing my family but I'm also sad to be saying good bye to Toni because she wont be here when I get back she will be at university.

 

Mum Says: this month has been particularly hard witht the steroids interfering with Alice's sleep, it means that we are all tired and having to deal with very emotional outbursts from Alice. Not a good end to 2013, but an end. Alice went into total melt down on New Years Eve and we are uncertain of we count it as the last  tantrum of 2013 or the first of 2014. Still we've put 2013 behind us and are looking forward to 2014. We wish you all a very happy new year!