Our beautiful little girl, Jessica Rose got diagnosed with a craniopharyngioma on the 10th March 2011. That date will hunt me for the rest of my life. The sadness, the hurt and confusing I felt that day is something I will never ever forget.

A craniopharyngioma is a benign brain tumour situated in the pituitary field. We¬†rejoiced at the fact that her tumour was not cancerous, however we have recently been informed that this tumour can act as deadly as cancer. In Jessica’s case, it is fast growing and without the aid or radiotherapy she will die! Our brave little solider has undergone 4 major operations, one lasting 8 hours (don’t know how I got through that day) and we are currently waiting to hear if Jess will get funding for proton therapy in the states. Proton Therapy is a type of radiotherapy which is currently not available in the UK. The chief advantage of proton therapy is the ability to more precisely localise the radiation dosage when compared with other types of external beam radiotherapy. This however will not cure Jessica, but slow the growth down. And we just pray to God, that radiotherapy combined with operations we will be able to keep her tumour under control and stop cysts forming off her tumour.

Any parent reading this may be thinking how the hell are we coping. The fact of the matter is…we don’t, but we have to. We just need to look at Jessica for inspiration. Jess is getting on with her life, I mean, you didn’t think a brain tumour would slow her down did you? Even after major brain surgery she is up wanting to play and eating her marmite on toast, and wondering what the fuss is all about. She amazes us and her medical team every single day. I wish I could be more like her.

Radiotherapy can change a child’s life forever, especially on the brain. It may slow/stop the growth of a tumour and in some lucky cases destroy it, but it may come with life changing consequences. In Jessica’s case we have been warned that she may lose her eye sight again and have learning difficulties, there are other risks attached but I would be here all day listing them all. Because of where her tumour is situated the radiation will all most definitely destroy her pituitary gland. She will need meds for the rest of her life to work as her pituitary gland. The simple things like growing won’t happen unless she has hormone injections every single day. In the grand scheme of things, we can live with this, as long as we have our little girl with us, it really doesn’t matter what medication she has to take each day. It will become part of her routine, and because she is so young, she really won’t know any different. I don’t know if that is a good or bad thing. Guess it is pretty sad.

The support from all our dearest family and friends has truly been amazing. We are very lucky to have a great bunch like you guys. You have helped us raise thousands of pounds towards Jessica’s treatment and rehabilitation. You have been there when I needed to chat or cry (wish someone was here now, I cannot type through my tears). So just a quick few thank yous. My girlfriends for taking me out when I needed cheering up. Zanne’s patrons, was a great way to forget about this nightmare I’m living (think I lost three hours of my life that night). Fiona should win women of the year for organising our successful fundraiser ¬£13K….YOU GO GIRL! Brandy for her delicious supply of yummy cupcakes, Nikki Power for my lovely manicures, Eveline for the yummy lunches, fun days out at Odds farm and for getting rid of some of that tension in my neck, Chrissie and Dan for treating me to a day at the races. Wicked afternoon! To all of you who donated/attended Jessica’s fundraiser in May. To all our family who took the time and effort to come visit us whilst we were in hospital, you were a great support!

 

And most importantly to Ben, you have been my rock! We make a great team and I truly don’t know how I would have got through all this without you. You have been a star. Jess is so lucky to have a Daddy like you.

Right – back to business. So the aim of this page is so that you can all follow Jessica’s journey ahead. I will update the wall so you can all see what is going on. It will be a great way to stay in contact whilst we spend 8 weeks in America for Jessica’s treatment. I will post pictures and updates every now and then so you can keep an eye on Jessica’s progress.

And one last thing, I know I say it all the time, but please keep Jess in your thoughts and prayers. We want lots of positive energy heading our way!!

Mum, Samantha Ward.

 

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4 comments

  1. Charlotte Miles
  2. Auntie Paula
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  3. David Sinfield

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