About Claudia
Today - February 2010.
Here we are almost 6 years down the track of Claudia's treatment and for those who have been following Claudia's journey you will know she is one special and determined girl - Princess. October 2004 was the worst part of the journey with some of the medical staff waving their white flag which hit us like a freight train but her lack of giving up and her strong, determined and stubborn attitude is what helped her through this terrible time. We also had the best doctor looking after her but soon after Claudia got to go home, this wonderful doctor went back to her home country. This was a massive loss for us, all the other families of 27B and of Starship Hospital but a massive gain for the next place of work for her. Then finally after 9 months of institutional life in hospital she got to go home in January 2005 and start her life again outside the hospital in the hope that she will get back to 'normal'.
Her rehabilitation was going well but then late in 2005 she had a new challenge - chronic graft verse host disease (GVHD)
- and consequentially she then started to lose her mobility and strength as well as her independence, something she had fought for after a long battle.
Then, April 2006, after some more intensive therapy she won that battle after
having a new doctor taking on her treatment management. The new wonder drug Rituximab was to be the best shot at stopping the GVHD and it seemed to work, only a new problem had already started. This was were her scalp was losing hair and after months of our concern it was finally agreed she still had GVHD and this is what was damaging her scalp.
This has led to months of dressing changes and skin grafts. Today we are still going through the painful exercise where Claudia has a long slow road ahead to have her scalp repair itself through these grafts. We had a plastic surgeon who
took Claudia on to give her the best care to ensure the best result but unfortunately
while it showed great improvement for a short while, unfortunately it
didn't have the hoped result.
Today Claudia can not walk and is quite weak and fragile. She scoots around the house on her
wheelchair or more recently her electric powered wheelchair which she
finds great delight in, especially as she races around the house leaving
her younger sister behind in her dust! She is still as sweet as ever and her thoughts and caring for & of others is so amazing after all she has been through. She does not get out of the house so much
preferring to stay indoors with Crystal her cat or playing one of her
many games. She does go over to her friends sometimes and also has
a lot of them come visit her through each week which is wonderful.
This website is about Claudia and her journey so we will continue to keep you informed about her progress and continue to hope for that miracle that she will walk again, go to school and have school mates, get away for camps away from home & family as well as get to do all those girly things a girl has got to do.
Thanks for checking in and keep her in your thoughts and prayers and that one day real soon we will be able to look back at this and tell her her story of what she has overcome and
achieved
which is what makes her who she is.
Lisa's Word - (August 2004) When our darling Claudia was diagnosed with AML Leukaemia in April (2004) it felt like the end of the world. The threat of loosing her is the worst pain I have ever experienced in all my life. We became one of the ‘other families’, who are affected by cancer. I had no idea what leukaemia was except that it was a life threatening illness. Since then we have had four courses of chemo and a few ups and downs but I have learnt so much more about the complexities people face in dealing with cancer every day. However, more importantly I have learnt about the strength of the human spirit and the kindness and generosity of family and friends and people I haven’t met yet, throughout New Zealand. We have been through the process of asking ourselves why this has happened. Maybe the answer lies in the knowledge that somewhere it has to happen to someone to remind us that life is so precious, we are not invincible or indestructible – life is a gift to celebrate everyday and not to be taken as a given. Unfortunately we are not all guaranteed to live until we are 90 or even 100. If this was guaranteed perhaps we wouldn’t live with such a passion – and if you don’t, you should start. We would never take risks or strive to learn new things as quickly as we do, we probably would procrastinate for the first 70 years. I have learnt one of the biggest lessons of my life. I have been asked what I do in the hospital to pass the time. Do I get bored? I treasure every minute with Claudia and it is the most exquisite pleasure to be able to spend these precious moments together. Claudia has a hilarious sense of humour and I am often laughing so hard enjoying something she does or something she has said. Laughing – really laughing – you know the one that comes from deep down inside. I have learnt that we have so much to learn about living from our children. They love everyday for the moment, not fearing tomorrow. Claudia finds joy in small things, butterflies, and little flowers tucked in the grass that we are too busy to see. I can hear her saying, ‘oh mummy, look at the flowers, aren’t they so beautiful.’ Children don't judge people. Claudia has never questioned her own or others hair loss, she doesn’t mention the nasal gastric tubes children have, wheelchairs, children walking up and down the hall pulling along drip machines and bandages etc, she knows them by their name and they interact with a wave or a smile. She just accepts. Tomorrow is a day away, next week is a long way off and next month – an eternity. The families and children on Ward 27B are the most incredible people I will have the pleasure of meeting. It feels like a big family up here and we all seem to share in each others highs and lows. The children are amazing warriors. Even though I can't write letters to everyone I want to say a heart felt thank you to everyone from the bottom of my heart. I will endeavour to update you on her progress everyday on the next step in Claudia’s treatment – a bone marrow transplant. Love Lisa xxx
Andrew's Word - (August 2004) Claudia was born at 20:28 on 27th September 2000 and Lisa ordered apple crumble and custard. I got the pleasure of cutting the umbilical cord making Claudia now dependant on our abilities to meet her every need and allow her to grow to become an independent child, a young woman and then a lady. Claudia achieved a large part of independence within the first 12 months of her life and was talking and walking bringing no end of happiness to all around her, but most of all her proud parents. 3 years, 7 months and 1 day after the day our lives changed for the better, we learned the news that no parent should ever hear about their child and this changed our lives forever. The thoughts, feelings, anger and frustration are a few of the many emotions that go through your head and it doesn't get easier, your level of strength just becomes greater. We are dealing with this the best that we can and Claudia makes it a lot easier for us in that she brings us much laughter, plenty of love and a great deal of happiness. Yes, this has taught us many things but things we would have preferred only reading about and being thankful it wasn't us. It is so easy to ignore those who are worse off than us. I remember at Claudia's birth while Lisa ate her apple crumble and custard, asking the Doctor to check that Claudia had only 5 fingers and toes on each hand and foot, seriously, but that is another story! We take for granted that we have our health, our warm homes, and that we can go to the local park to play but now we know that what we have today we should be grateful for and that what we can do today we should do today. Patience and tolerance are two of my weaknesses and I have learnt a lot so far from Claudia and want to learn much more. Life becomes so much clearer when it comes under threat from being taken away. The staff here at Auckland's Starship Hospital are amazing and their level of expertise are very reassuring that we have the best care available for her. There is still a long way to go on this ever changing track and we are believing in a complete cure after the Bone Marrow Transplant that Claudia is about to go through. We have and will continue to be with her every step of the way and wish only that we could be in her place. However, once we get through this next hurdle, the BMT, we will be very happy to take her home and start her new future. Thank you to all that are there and for all your thoughts, prayers and gifts. Your continued support is a great help and we appreciate it all, even if we haven't taken the time to tell you or even spoken with you in a while. And thank you especially to David and Ian for your support because without it I would have much more to deal with. For all you messages please send them to Claudia at her email address on the contact page. Talk to you all soon, Andrew.
Lisa's Poem - (August 2004)
A Child Lives
Here
I stand at the window, my arms encircled around me,
Drinking in the sprawling cityscape.
The stories of glass catching and reflecting the radiance of the sun.
Inside the air-conditioning hums,
Sending out a gentle breeze.
The curtains slowly breathing in and out.
The baby blue paint on the wall feels cool.
The pale jade flooring shines.
Sunlight enters strongly through the window
And rests on the tinsel tail of a little girl’s toy pony.
A helium filled balloon, pink and red
Stands by the window,
Its curled ribbons dancing with the breeze,
unable to break free, tethered by a sugar pink ribbon
and weighted down by a small plastic red heart.
A little girl lives here.
I see the view from my window but cannot connect.
I feel the breeze from the air conditioner, I long for fresh air.
The blue walls, painted to calm.
The floor – linoleum, surgically clean.
The small horse an attempt to buy happiness.
The balloon, again a feeble attempt to placate.
Tethered like us to this room –
Weighted down by a small red heart knowing –
A little girl shouldn’t live here