Katie Taylor

February 1st saw Katie tired and very weak.  She wanted desperately to take Faith, her great Great Dane to training class but was simply too weak to do it which then upset her even more.  She stayed on the sofa and rested with Faith for the day.  The following day was Saturday and things picked up, in the afternoon she went out with Susan to take some photos for the camera club meeting.  They ended up back home after a good afternoon of laughing, taking pictures and having chips in Matlock Bath - perfect!

Tuesday 5th saw her back at QMC for more checks, she felt dizzy with a bad headache and when weighed had lost more weight.  Mr Hewitt contacted Prof. Patel for a follow-up.  The following days she was tired and still getting pains in her legs.  This culminated in being admitted to QMC on Sunday 10th with a very swollen eye which had come out of nowhere and immense pains in her legs.  A scan was requested, bloods taken, antibiotics given and a drip set up.  Lying there, pale and worn out she joked about the  marks left by all the blood tests "Look - When I get back to school Im going to tell everybody Im a rehabilitated druggie!" on hearing ths one of the nurses pretended to be shocked "Katie!" she admonished....Katies answer was a raised eyebrow and "Well... bet I've had more drugs than you've ever had!"

Wednesday 13th. The appointment for the bone scan was attended.  

Living in hospital is very debilitating - nothing feels right, you are forever on edge, very emotional.  The ward itself - E38 at QMC is one of the most amazing places we will ever visit.  Children with serious life threatening illnesses in and out, parents making new friends.  New terms of speaking and phraseology come into being and are soon as accepted and in as common use as "put the kettle on".  Staff are amazingly calm in the face of such pent up emotional parents,  staying professional but caring at all times.  Its nothing to make tea and toast with jam at 2 or 3 in the morning.  Life is normal but a different normal. 

Friday 15th. Wayne and I waited for the results of the bone scan.  What would it show? The consultants gathered round.  We  heard the results sitting so calmly around Katie lying in her bed. Hotpots all over her body.   So what now. We had been thrown back as unwilling participants on a rollercoaster ride, blindfolded and afraid of getting off. How was is possible for a small mole to be the cause of all this? It was inconceivable.  Months later I still dont understand. I never will. This research into finding a cure for this silentkiller was needed so badly.  It finally hit home there was was no chance of a "Happy Ever After". Our daughter was going to die. We couldnt tell her - Out of all the uncertainties, hopes being dashed and the confusion I only knew that one fact. Despite always being honest with both our children we now had to lie to them. We would never tell them Katie was dying. Ever. It was the hardest thing I had ever had to do. I will never forgive myself for not being strong enough to tell her the truth. It was a totally selfish reason - I couldnt look into her eyes knowing she knew she was dying.The pain would just have been to great to bear.  Right upto the end we kept up the facade of  "It'll be ok - you're going to get better".

The remainder of February saw the pains getting stronger, the level of pain relief upped dramaticaly and the introduction of patches containing a morphine derivative to stick on her body.  She was now so weak as to be unable to get upstairs so a bed for downstairs was ordered along with other items to help her cope. 

Friday 22nd we went to Nottingham City for a new scan called a PET CT Scan.  Time spent waiting for results is the longest time ever.  Hour after hour then day after day and no news.  Every few days saw the pain management level being upped as the pain spiralled out of control, patches doubled then doubled again, severadol (another morphine derivative) uppped and upped again.