12 April 2013

Two years on.....

Two years ago today our world came crashing down all around us and those words that no parent ever wants to hear was said to us......Paige was just 10 mths old at the time and looked like a normal, healthy, beautiful little girl

At Maracas beach in March 2011 - a chuf chuf at about 9.5kgs, look at the rolls of fat in the bikini....

 April 2011 - about a week after diagnosis at the Piam Brown Ward at the Southampton General Hospital, after lots of fluids and steroids

One year later we were back at the Paim Brown Warn in isolation for nearly three weeks with various issues and her feeding tube was inserted, she was completely bald having lost her second lot of hair, and quite thin at 9.1kgs, as Russell said at the time, she's was the picture perfect model for a child with cancer.

Loosing her hair was traumatic for all of us, especially her and most time she refused to let us take photos. I remember having a conversation with Dr Mary Morgan about her hair and she told me that it just it's one of the absolute visual reminders that your child has cancer and I shouldn't feel bad about being upset about it.

Now two years on, she has long beautiful hair, has managed without her feeding tube for 6 mths now and had her central line removed in early Dec last year. She is now 12.4kgs and looks amazing! Her hair unfortunately has started falling off again and I am trying my damnedest to prepare myself and Paige for the eventuality......

This was taken today showing off her scar from the central line on her neck

A close up with her sesame covered face

Our lives are still held together by glue and sellotape, and one would think that it would get a bit easier after two years, but the reality is that it does not. In some ways it gets harder because you have bonded so much more. Paige is so articulate now, with quite an extensive vocabulary that she is able to vividly describe all her ailments. She's having a pretty rough week with tummy pains, a painful jaw and tired legs. She said while walking up the stairs "mummy can you carry me? I'm trying to walk but my legs are just hurting so much"

She is also just too clever. Today at lunch she refused to eat my minestrone soup and asked for a peanut butter sandwich instead. The conversation went like this
Me: Paige I'm not very happy the your not eating my lovely lunch
Paige: she holds out the sandwich and says "just pretend that this is your soup and you'll be happy!"

but the end of treatment is drawing is near and we have to be thankful for that...just three more rounds of chemo to go.

A very special thank you to all our family and friends who have provided unrelenting support over the last two years, and to our new friends as well that have just come into our lives with kind words, thoughts and deeds...we really appreciate it.

10 April 2013

Neutrophils where are you...........

The high of the last two weeks came crashing down when Paige's blood results for this week showed that her neutrophils were at rock bottom of 0.1. Two weeks ago we were so proud of her ability to get to neutrophils of 4.5 on her own after two continuous weeks of her full dosage of oral chemotherapy.
Usually when her neutrophils have crashed there is a distinct change in her behavior and she is unable to make it through the day without a nap. Paige however clearly has unrelenting willpower  and she has made it through several days without a midday nap, just so that she can join in the activities with Samuel.On Saturday she even went scooting and to a birthday party with Samuel at the Marwell's activity center, she had a great time walking across a fallen log and looking at all the kids at the indoor play center. She is ever so clever though, she was allowed to use some of the rocking toys next to the soft play area, and before she went on she came running over..."mummy where are my gloves?' I am so pleased that she was protected!

So the start of the week was a like a swift kick in the gut and now her hair has started to fall out again :-( she has long beautiful hair and it's everywhere. Hopefully it'll just get thin and not all fall off. Apparently only some kids loose their hair during maintenance and Paige is one of those. For those that remember this is her third lot of hair and last time she lost more than 50% of her eyebrows and eyelashes as well :-(

her lovely hair

On the bright side we are busy planning birthday parties for both Paige and Samuel. Even though Paige is a bit young she has asked for a party and Sally of Jiggy Wrigglers has asked to provide a complimentary hall, entertainment and Peppa Pig for Paige party - thank you Sally you certainly have a big heart!

I also held my first fund raiser for CLIC Sergant yesterday, and while 50% of the people didn't make it, the ones that did had a great time and I still managed to raise some money. I also did a radio interview for WAVE 105, to be used during a fundraiser drive that they are doing for CLIC Sargent. It should be aired this weekend.

So the roller coaster that is our life continues, helped along the way with beautiful smiles and lots of chatter from the beautiful Ms Paige

Bloods will be done again next week Monday......