We are a close family so with Lily’s Grandparents, Aunts and Uncles in tow for support we went to our appointment for the results (19th November, 2004). They had mentioned that minor treatments could be done in Hull but if not we may have to go to Jimmies in Leeds.  When we arrived we were shown into a side ward. That raised our hopes thinking that Lily could be treated in Hull and that it wasn’t as serious as we had first suspected.  However that was for our privacy away from the ward.  We still can’t get our head round the words that were said.  “Lily has a Brain Stem Glioma that is incurable and untreatable.”  I just remember saying “You mean she is going to die.” Even the surgeon found it hard not to shed a tear.  Lily’s prognosis was 8 weeks possibly a maximum of a year if she underwent a gruelling six week radiotherapy programme.  The radiotherapy would slow the tumour, hopefully giving her, and us, more time but we were told that once it started to grow again it would be at a very fast rate.  We both came off work to be with her every day, not knowing which day would be her last.  Like anyone who has been in this position you think, “No this doesn’t happen to us, there will be a cure.” I think we secretly hoped that they had got it wrong and a treatment would be found to save our precious little girl. It wasn’t from lack of trying on our part. We E -mailed and wrote letters all over the world looking for a country that had attempted surgery or had advanced treatment on this particular tumour. We read books and tried various alternative therapies.

Our beautiful girl underwent the radiotherapy everyday for six weeks at Cookridge Hospital in Leeds (now closed down). Her bravery was second to none and she rarely complained of pain or discomfort.  The first time she had radiotherapy, it made her very sick and she was admitted to Leeds General Hospital  on an anti sickness drip. As she put on weight with the steroids the mask made for her radiotherapy became very tight and uncomfortable as it had to be attached to the table to keep her head stable. It made her wince as it caught her skin but she didn’t want to go through having another one made so put up with it. The trips to Leeds and back each day took their toll. We wanted to keep things as normal as possible in her life and as she loved school she still attended , her choice, with mum going along to keep an eye on her (not her choice).  However she was greatly independent and embarrassed to have me around,  so I worked in another classroom letting her think that I had a new job.
After Lily’s treatment we settled back into family life and Lily was really quite well. Any onlooker would never believe that her life could end any day, we certainly didn’t believe it could. We had many weekends away with family, Lily’s friends and their family, letting everyone share in the short time she had left.   Our house was always full of visitors, something we do not regret one bit,  although at times we sometimes felt we were on the periphery. We re-newed our vows so that Lily could be our bridesmaid and George our page boy. We had a fabulous party and all went on the honeymoon to London then onto Disneyland Paris.  We used the time we had left as a family to build as many memories as we could. We went to Lapland with the When you Wish Upon a Star Charity and she met Hi Five, Busted and was a Mascot at Hull City. We had family portraits and we all went in a limo to a private viewing at the cinema. All these wonderful treats were arranged by friends, family and colleagues who we can’t thank enough, even to this day, for their support.

On return from our Spanish holiday, mid August 2005 Lily’s wobble had returned and she was having trouble focusing her eyes.   She had many off days feeling sick and headaches. God only knows the extent of her pain and confusion.  What was going on in her head? Did she know she was not long for this world?  She did ask one or twice “am I going to die”, did she know or was it a child’s innocent question.   It broke our heart and hurt us all to see her like this, the reality was here.  They said we would know when the time came and we did.  She slept with Jas and I, we were afraid for her to be alone. She wouldn’t come down stairs in a morning to lie on the sofa so we spent days watching videos and TV programmes in bed, she always wanted someone to stay in bed with her. If she didn’t want to do something there was no point in pushing.

We were desperate for her to see her seventh birthday and arranged a small party, disco and games in the playroom with her close friends with a chocolate fountain.  She wasn’t really up to it and was exhausted after the allotted two hours.
We were on the slippery road as her body gradually started shutting down but she was still fiercely independent and assertive. As said before she was well old beyond her years. The brain stopped sending messages to her legs so they had jerky movements or gave way but rather than be carried, she would crawl to get where she wanted.  Next to go was her inability for the brain to send message to the bladder and bowels and she would go for days without urinating. Medications for all these complications were been increased daily.

We and her grandparents put together to buy her a Border Terrier puppy for her birthday. She and George had taken a shine to him at the farm that we had been visiting, he was the last one.  We already had one Border Terrier but how could we refuse.  She named him Paddy and spent many an hour with him on her knee. We had a lovely late summer that year. Even into October we would spend days on the garden swing, with Paddy snuggled on her knee, cutting, sticking and playing schools.  We had found something to get her out of bed. She loved being the teacher throwing her authority around.  It was so comical.
However these happy days were short lived. Lily’s breathing became laboured, her oral morphine was not taking the headaches away and her sleeping was increasing.

On Sunday  16th October our GP arrived at our home as I felt sure that Lily had a chest infection her chest was so noisy  and we didn’t want her to suffer any more than she was.  The GP informed us that she thought the time had come and that we would probably lose Lily that day. 
We called all our family and friends and everyone came to say their goodbyes. We lit candles and played soft music. There was calmness about everything there was no hysteria or panic. The McMillan care team arrived mid morning to put a syringe  driver in place so that Lily was getting a constant level of pain relief so we knew that she would not be in any pain. By lunch time she had slipped into a coma but we all constantly  sat on the bed talking and speaking to her,  as they say the hearing is the last sense to go.  She slipped away in our arms at 10.30pm.

Lily’s brave battle and suffering was over.  Ours was only just beginning!!!