Inspiration

04/09/2012

16 Comments

 
Since Elizabeth was diagnosed with Leukaemia so many people have told me how inspiring I am and how strong I am. It is hard for me to think of being anything else but today as I was laughing at Elizabeth being a little know it all and showing off for all the nurses, I realised that she is the inspiring one, she has inspired me and her strength is what gives me strength. Its not coming from me to her its the other way round.

When the doctor told me on Friday what the side effects of the steroids would be I just had to laugh, moodiness, tantrums, night waking, stroppiness, demanding and clingy all described the Beth I already knew and loved but the Beth that I have seen emerge over the last few days is kind, considerate, loving and an absolute sweetheart. From giving one of her balloons to her sister to wanting to share her food, sharing her dvds with fellow patients as well as telling me she loves me a lot, Elizabeth has been so generous to everyone.

She has charmed the pants of every nurse, every doctor and even the cleaners. Her constant chatter and smiles as well as her cheeky remarks has them all grinning. From the "no thank you"'s when being offered her medicine to the random happy things that come out of her mouth it is as though nothing can phase this little girl.

We were discussing hair loss yesterday as there are a few people on the ward further along in their treatment and her answer was that as she didnt like me brushing it and she didnt like me washing it she may as well not have any. She did clarify that she doesnt want it shaved off though as "only boys shave".

We had a chance to meet with the wards teachers today and she starts hospital school tomorrow and the things she was coming out with had them in stitches. They asked her if she was a clever girl and she said "No, I'm a clever clogs!" They asked her if she knows her numbers and she said "I can count to 100 but sometimes I get the tens wrong. I can also count in spanish but I bet you dont" when asked about her alphabet she said "I learnt my alphabet when I was a baby but sometimes I write the letters wrong and they go a bit funny like grandad".

Elizabeth understands that she is ill in hospital because her blood is poorly and she has bad bruises, she understands she has to take medicines to make her blood better but what she doesnt understand is why the nurses always want to check her muscles with the squeezy (for those of you who do not speak child or gibberish its her blood pressure). Why do they make up such stories for kids and at what age do they start explaining things properly? There is no way she was taking that crap but since I explained what it actually does she has been perfectly happy to have it done.

The biggest surprise of all is Elizabeth's love of her Wiggly or her Snake. She had a Hickman Line fitted on Friday and ever since she woke up from the surgery it has been called her snake, she hates people touching it because she thinks they are going to take it away. She even went so far to make a deal with a nurse "I will let you touch my snakey if you do not take it off. Is that a deal?" and she made her shake hands and say. She thinks her drip is giving snakey a drink and some of her medicines are snakeys food. However she thinks of it the power of acceptance is amazing.

We have been worried about Elizabeth's eating since she came into the hospital but seen as she never really ate much anyway and the food here is terrible it took me a few days to be concerned. She has however proven herself to still be the most stubborn determined little girl that I once knew when it comes to food. Yesterday she demanded McDonalds as she fancied a burger so daddy had to drive from our house to Mcdonalds and then to the hospital before heading home again and tonight she demanded freshly cooked part baked baguettes and tinned spaghetti, "but it better not be hoops or alphabets just straight spaghetti ok mum!" Daddy and Aunty Cat came to visit today with Alison and brought her chosen dinner in with them and within a few minutes she said they have been there a while now so they could go. The cheek on the little blitter is unbelievable.

Maybe now you will see where my strength and my inspiration comes from because I can tell you I am giggling just thinking of the things she has said today. Where ever this amazing little girl came from I definitely want her to stay.
 


Comments

Jen link
04/09/2012 23:11

A truly inspiring little girl xxx

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sarahmumof3 link
04/09/2012 23:11

such a wonderful post, Elizabeth sounds like she will lead the way through this all and keep you all in line! what a star xx

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Sadie
04/09/2012 23:16

Laura, I came on earlier to see if there were any updates and didn't see one, so thought, let me go see if you had posted on twitter and there at the top of my page is your tweet about this blog post!
Can I say I have happy tears reading this, I am in awe of you both, I know you say you are inspired by Elizabeth, but she is your daughter and she is part of you, she sounds like a ray of sunshine bless her and good for her letting everyone know what she likes and doesn't like, she will go far in life, the clever little munchkin.
Sending love and prayers your way ladies and to the rest of the family too. I am so pleased she is handling it the way she is, she sounds like a right little trooper bless her x

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Eggdipdip link
04/09/2012 23:22

What a wee star :) that's so great she's accepted her Hickman line. My husband had a PICCl line twice for 3 months each time and hated it. Maybe he should have named them - at least then he could have sworn at them properly ;)

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Actually Mummy link
04/09/2012 23:31

I know now is not the time, but she should seriously consider writing her own post for Wot So Funee? She's way better than GG! I love that she has a name for her pet hickman line. She truly is dealing with it all very well - but I guess kids make the best of whatever situation they have. Way better than us at acceptance. I hope she continues to inspire you :)

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TheBoyandMe link
04/09/2012 23:34

Oh you've just made me cry at the absolute devotion and love in this post. I really get a handle on her personality and she's a little poppet. Hope she has fun with the teachers.

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jenny paulin
04/09/2012 23:42

wow! i am at a loss for words,. i feel teary and all emotional after reading such a sweet and loving post. she sounds like the most amazing little girl, so compassionate, caring and bossy lol
its all down to you she is like she is. you must be very proud and i am thinking of you x x

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Katie Vyktoriah link
05/09/2012 01:00

She is definitely an inspiration, honey. And she gets it from you. She is your daughter through and through, and it is amazing how positive you are all being throughout this time. I am proud of you and of her, and I only hope that I could show the same strength you both have shown through this should I ever go through something similar. xx

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Kylie link
05/09/2012 07:58

Kids are awesome. As well as the preemie stuff I've done a lot of work as a specialist carer for kids with disabilities and life limiting illness.

The chemo will kill her appetitie, so just treat her like a queen as you are doing, if she wants straight spaghetti, get it, chocolate biscuits, let her have it. Easier when she is not at home with your other little girl.

All my strenth came from Joseph. The doctors used to laugh at me, as I used to explain every medical procedure properly to Joseph (all 1lb odd of him) and always have done. It is slightly scary now as when he looks at pictures of babies he'll say "that baby has come off the ventilator and is now on CPAP" he's 3!!! lol

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Chelsea Williams link
05/09/2012 09:26

What a fantastic little girl. Her strength is amazing. xxx

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jackie
05/09/2012 10:03

im so glad you are keeping this daily diary laura, its my only way of keeping up 2 speed with whats happening ! thank you..u r both an inspiration, im blown away by your strength...let me know if there is absolutely anythin i can do..xx

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Jen aka The Mad House link
05/09/2012 10:39

She is a credit to you all. I think this just shows what a strong and cohesive family unit you are. Together you can achieve anything. I have been thinking of you and Elizabeth

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Clare - Emmys Mummy link
05/09/2012 21:56

Laughing with tears in my eyes - that girl is amazing!!!

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Emma (crazywithtwins) link
20/09/2012 10:59

Oh my. I am so sorry to hear your little girl has Leukaemia and sorry that I didn't read your blog sooner (before diagnosis).

I had Acute Lymphoblastic Leukaemia when I was 8 years old. I had chemotherapy for 100 weeks.I want to reassure you on a few things that may worry you over the next year or two...

1) It is a LOT easier to go through chemo as a child, than it is for the parent of that child. Children are resilient and take everything in their stride. The only important thing to your daughter, is that you never leave her side, and never stop telling her how much you love her.
2) I missed an entire year of school. I never went to the hospital school because I simply didnt want to. It did me no harm whatsoever. I didn't fall behind, I now have A levels and a degree. Your daughter will learn a million more valuable lessons during her chemo, than she will ever learn in school. She will learn the meaning of life, of friendship, of family, beleif, strength and most importantly the meaning of love.
3) Let her eat what she wants, when she wants. When she hits the steroids - she will eat non-stop and have crazy fads. I ate marmite morning noon and night. I ate bombay mix for breakfast, 6 packets of wotsits, 6 packets of skips and 4 packets of supernoodles - between meals... every day that I was on steroids. My face ballooned. But I went back to normal after. Chemo makes some foods taste funny, so if she suddenly doesn't like something she used to like - just go with it. The hospital will probably also let you cook things for her sometimes to give her a break from hospital food.
4) Tell her EVERYTHING! My doctor told my mum to always be honest and explain everything to me. For the complicated sciency bits, the doctors would draw pictures of cells on a whiteboard for me. Knowing and understanding everything, not only helped me get through it, but it taught me about my body, it taught me what to expect and once, when a nurse made a serious mistake, it saved my life as I was able to question what she was doing.
5) The lack of hair will bother other people, more than it will bother your daughter. I refused to shave mine and it fell out in patchy chunks. I was heartbroken as my hair was the longest in my school. But once it was gone. I was happy about it. I chose not to wear a wig, but I had all sorts of funky hats to keep my head warm.
6) Beleive. There was only ONE time in my two years of chemo, that I doubted whether I would make it. My mums beleif that I would make it, is what got me through.
7) Fertility. My doctors told me that there was a possibility of infertility due to my chemo. I now have three beautiful, naturally conceived and naturally delivered, daughters, who are my entire world.
8) See the fun side in EVERYTHING. Chemo is a long and difficult road. There will be times when it is VERY tough (especially for you, seeing her in pain). But it's important to try and see the positive in every little thing. For every blood test - we used to place bets on how many neutrophils and how many platelets I'd have. If I couldn't sleep we'd play cards (for pennies), wind up the nurses, make things, read. I had two birthdays in hospital but I still remember them as happy days, because of my mum.

I can't say that your journey will be the same as mine - your daughter may find some things easier than me and other things iharder. But If you EVER want someone to talk to, or advice or to know anything about how Leukaemia may affect your daughter, from someone whose been there... email me at crazywithtwins1 (at) gmail . com - Any time, day or night.

I wish you all the best of luck, apologise for my insanely long comment, and pray your daughter makes a full recovery and responds positively to her treatment. Much love and thoughts to you. xxx

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Katie (pollyrabbit) link
03/10/2012 21:38

Your little girl sounds such a little character! :-) I can only imagine that her character helps keep you going through such a time... but it's true nonetheless, you ARE an inspiration. Love & thoughts x

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Becky Goddard-Hill
14/10/2012 23:14

Wow she sounds terrifiv. Thanks so much for shariing this at sunday inspiration. You guys are doing just great. Bless you xxx

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