Just need to share

[Daisy_chains]

Hey everyone,

I posted here a while ago about me being worried as i was travelling for treatment to Great Ormond Street in London for treatment for my Neuroblastoma.

The jouney there and back went pretty well - i suprised myself. The initial chemotherapy wasnt what i was expecting, i felt ill and tired and very feverish, but my parents helped me get through it and the nurses were lovely. We were all really hopeful.

Last friday i had a bone scan and an xray as i was experiencing pain in my hip that was making my leg tingle and go numb. The doctors called us yesterday to ask us if we could go in to discuss the results of the scans.

We got there, feeling hopeful only to be told that not only did the last round of chemotherapy not work for the tumour round my spine, but the cancer has also travelled to my bones, and the reason i am in so much pain is because the tumour is making my bones weak and causing the "fermur" bone (or something like that) to gradually weaken and fracture.

We go to the hospital tomorrow (friday) to discuss more treatments options. This is my worst nightmare and i am absolutely terrified. I had my heart set on going to college in september.

Thanks for reading, i just needed to share :weep:

Daisy

[mystics]

:hugs: :hugs: :hugs: Daisy :hugs: :hugs:

Please try and keep thinking in a positive frame of mind

As i think i told you my daughter was diagnosed with neuroblastoma stage 4 when she was a baby primary behind her lungs secondaries had affected her bone marrow, all this was 16 years ago when neuroblastoma was hardly ever heard of,My daughter is now 17 and fantastic, no complications from the chemo etc that unfortunately the doctors/nurses have to tell you about.

The treatments available have come on so much over the years, so please try not to get yourself all anxious, You have done so well, I remember your initial post about the journey to Gt Ormond Street and how scared you were, You Have proved to yourself how strong you are already now prove to the Neuroblastoma that you are tougher than it and can and will beat it!!

Wishing you all the best with the hosp appt tomorrow
Please feel free to PM me if you need to chat

Brightest Angel Blessings
Mystics:flowers:

[Daisy_chains]

thankyou mystics!

can i ask where your daughter was treated? or what protocol she was on?

Lots of love xxxx

[mystics]

Hi Daisy,
My daughter was treated at Nottinghams Queens Medical Centre with support from oncologists from Gt Ormond and AlderHey Hosp as she was only the second child in Nottingham to be diagnosed with Neuroblastoma.

Her Protocol again due to the inexperience the oncologists had with neuroblastoma we agreed to a trial protocol, plus her prognosis was very grim so in our eyes we just HAD to take whatever was on offer.

I will have a hunt around for her protocol care plan but cant promise I will find it as It is probably hauled in the loft in Tanyshia's special keepsake box.

Try and keep positive Hun, I know its difficult but you can do this :hugs:

If you or your family have any more questions please feel free to ask away, I will try and help as best I can.

Keep me posted on how you are getting on and especially what happens tomorrow, will be thinking of you.:hugs:

Brightest Angel Blessings
Mystics :flowers:

[ThreeBee23]

I don't know what you believe, but I just wanted you to know I just prayed for you. :)