Just felt i had to tell our story!
Around Easter 2008 my girl (7yrs) had a slight cough...(how many kids visit there doc with a cough?!)
After some 4-5 weeks it had'nt cleared so i took her to our GP.
A course of antibiotics did'nt help and GP, i beleive, on gut instinct, asked for an urgent x-ray...
Thursday afternoon x-ray, friday morning EARLY morning call from GP saying the hospital is waiting for you!
MRI that friday afternoon...mass found on her lung?!?
Our hospital consultant was honest enough to say it was not something he had ever experienced and referred us straight to our nearest Specialist centre...
By the monday morning we were in BRISTOL Childrens(UK) for diagnosis.
After many blood test, urine, MRI, ultrasound and x-rays, biopsy came back with Ganglioneuroma which showed as benign.
BUT the surgeon said they do have a habit of disguising themselves...
So based on this we were sent home to wait for a surgery date.
In the last week of July we had a call that a cancellation had arisen, would we take it?
Umm YES! so two days later we arrived back in Bristol for more blood tests, ecg and ultrasound of her kidneys...
Her surgeon had been very open & honest with both her and me in explaining everything...the nurses were fantastic (and very busy).
So on the wednesday she had a 3 hr proceedure to remove a 10 by 8cm 'lump' from her spine at T8 & T9 which was more attatched than the MRI showed and pathology showed it to be GANGLIONEUROBLASTOMA.
By saturday they stopped her morphine and by monday we were home!
MIBG (radioactive girl!) approx 1 mth later was clear as was her bone marrow...
BY THE GRACE OF GOD, NO CHEMO OR RAD therapy...just MRI monitering every 3mths for the forseable future...
She had no outward sign of illness, but thanks to our GP she is back to school and blaming me for making her have more needles at each doctors visit
I WOULD JUST LIKE TO SAY WE HAVE BEEN LUCKY BEYOND BELIEF...
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