Milly was born 7 weeks premature in December 2005. She had health problems from day one and never took to feeding. At 3 months old she developed pneumonia and suffered terribly from acid reflux and vomitting, she wasn't gaining weight and became very poorly. An NG tube was inserted to feed her but this was very problematic and eventually we won our battle to get her referred to Great Ormond St hospital. The doctors discovered via chest xrays that milly could not swallow, and the milk had been silently entering her chest rather than stomach, and recommended she have a gastrostomy tube directly into the stomach rather than ng tube down the nose. When she was well established with feeding and her chest improved, at the age of 1, she was CT scanned to check the brain for any cause for the swallowing difficulties. They discovered an optic glioma brain tumour sitting centrally on the optic nerves. An 18 month course of chemo was commenced when she was 16 months old and finished just before she turned 3 at the end of 2007. The chemo worked well and the tumour shrank slightly. Surgery has never been an option due to the location of the tumour, and radiotherapy was not possible due to it's aggressive nature on such a small brain. Milly had MRI scans every 3 months to monitor the tumour, and in October 2010 we had a scan result that confirmed the findings of the previous scan 3 months earlier; the tumour was growing again. Chemo was recommenced in november 2010. Treatment got off to a slow start due to problems with no bed availabilty, bad weather, ill health etc. On the 2nd cycle Milly became very unwell, in January 2011, and it was discovered she had developed hydrocephalus, fluid on the brain. It was touch and go for a while, but an urgent brain op to put a shunt in to drain the fluid quickly improved her health. The doctors were not happy with the progress of the tumour and on 15/2/11 had a meeting to discuss further treatment options. They feel she needs radiotherapy but do not want to compromise her wonderfully active little brain! Therefore the outcome of their meeting was recommendation for Proton therapy in the USA. We need a lot more info about this which we will get tomorrow, 17/2/11. We may need to set up a fudraising page if we need to fund any part of the trip and wanted to get the ball rolling by spreading the word.
UPDATED 18/2/11: MILLY WILL BE REFERRED FOR PROTON THERAPY IN JACKSONVILLE, FLORIDA. REFERRAL PROCESS TAKES 6-8 WEEKS AND IF WE GET THE GO AHEAD WE WILL LEAVE IN APRIL AND BE GONE FOR 3 MONTHS! CANNOT WORK OUT THE LOGISTICS OF IT YET! IF AGREED, THE NHS FUND TREATMENT/ONE RETURN FLIGHT FOR MILLY AND BOTH PARENTS/ AND ACCOMMODATION. WE HAVE TO COVER ALL COST OF LIVING WHILST OUT THERE, TRANSPORT AND ANY OTHER FLIGHTS REQUIRED DURING THE 3 MONTHS IF WE NEED TO COME BACK TO THE UK FOR ANY REASON, NOT TO MENTION COVERING THE COST OF OUR MORTGAGE AND BILLS WHILE WE'RE AWAY. IM SURE WE'LL WORK IT OUT SOMEHOW.
IN THE MEANTIME, MILLY HAS BEEN STARTED ON ORAL CHEMO VIA AN NG TUBE (THROUGH THE NOSE) WHICH IS 4X A DAY FOR 3 DAYS, THEN TWICE A DAY FOR 2 DAYS, THEN 10 DAY REST, THEN IV CHEMO AT GOSH, 2 WEEK REST, IV AGAIN, THEN RESTART CYCLE AGAIN.

Please give what ever you can afford thankyou for taking the time to read this x