A time to celebrate......

"The world needs your kind of strength, your passion, your creativity, your heart, your mind, your brilliance................SHINE ON!"

Some things are so worthy of celebration. Keeley turning 8 years old was well and truly one of them. I am a little late in blogging about her birthday, because to be honest, I didn't know what to write. How do I sum up her 8 extraordinary years so far. Then I realised that I don't need to. She is a hero, and that is all I need to say.

Happy birthday Keeley, no one could ever love a daughter and believe in her more deeply than I love and believe in you. xx

A leap of faith.............

Almost 7 years ago, my baby girl was wheeled into an operating theatre, and 17 gruelling hours later, she emerged, barely clinging onto life, with half a brain. Exhausted, emotionally frazzled, but with some tiny piece of hope held firmly in my heart, I sat beside her bed in the intensive care unit. Her surgeon had just told me that she did not expect Keeley to survive the night. I waited. I willed her to live. I held on to the hope of her not only surviving, but living, enjoying life. Having a seizure free existence. After all, that is why she had just endured a 17 hour procedure to remove half of her brain - seizure freedom. I will never forget the moment, after 3 days, when Keeley finally opened her eyes. I will never forget the heartache when, she began to seize.

Her surgeon had left behind a small remnant of left mesial frontal lobe tissue, as she believed it to be fused to the right hemisphere, and deemed it too dangerous to proceed to remove it. Although Keeley's hemispherectomy had helped to significantly reduce her seizures, she has battled with intractable epilepsy for the past 8 years. No amount of medication, no medication combination, no amount of me hating and cussing seizures, has ever stopped them. For the past 7 years, I have been trying to convince her surgeon, her old neurologist, her new neurologist, her epileptologist to evaluate Keeley to see if she would be a candidate to have this remnant tissue removed. It has been what seemed like the fight of my life! One that seemed to have no end. After Keeley went into status epilepticus just prior to Christmas, and started having a massive amount of seizures on a daily basis, the fight got ugly! We met with her neurosurgeon, after having an MRI, and when we spoke about the subject of surgery again, her response was.......'why bother'!

To cut a very very long story short, I had Keeley's GP refer her to see a surgeon that I found in Sydney. We met with him last week. I was nervous and excited all at the same time. After a long chat with him, he broke the news that almost knocked me to the ground...... He thinks Keeley is a great candidate for surgery. He believes that by removing the remnant tissue, she has an 80% chance of seizure and medication freedom!!!!!!!!!!!!!!!!!!!!!

The plan is.................. Keeley will be admitted to the Royal Children's Hospital in Brisbane on Monday 4 April for prolonged VEEG and SPECT scan. She will be discharged on Thursday or Friday that week. We will come home, wash clothes, take a deep breath, and fly down to Sydney on Sunday April 10 where she will be admitted to Westmead Children's Hospital that afternoon. Monday she will have an MRI and Tuesday April 12 she will undergo removal of the left mesial frontal lobe. She will then wake up, give me a high five, and be seizure free for the rest of her life!

In the words of my beautiful, always there supporting me Mum.........."Shine on Keeley"..............

Holding on to hope....

How could anyone possibly look at that perfect angel face and not be blinded by her beauty? How could you look into her eyes and not see a shining light, brighter than the moon in the night sky? How could anyone hear her laughter and not want to dance to the glorious sound of it? How could someone ever give up on her?

In a heartbreaking meeting last week, Keeley's Neurosurgeon, the woman that performed her hemispherectomy, gave up. Keeley's seizures are still clouding her world, and we consulted her Neurosurgeon, for results of a recent MRI scan, with HOPE that Keeley would have options, some kind of a chance at seizure reduction or better still, seizure freedom. Keeley has a small portion of remnant tissue in the left frontal area, that was spared during her hemi, as the surgeon found that there didn't appear to be a corpus callosum in this area, and deemed it too dangerous to proceed, given that Keeley's operation had been going for 17 horrific hours. Her EEG shows interictal patterns in this area when seizures aren't recorded, and her seizure types are characteristic of frontal lobe epilepsy. All of this gave us the smallest bit of hope that maybe this tissue could be removed, and give Keeley a chance at a better life. The Neurosurgeon's response to this suggestion "WHY BOTHER". She went on to say that she believes that Keeley's prognosis is very poor, that she is severely impaired, and that she will not develop or progress any further in her life. If Keeley's seizures aren't life threatening, then there is no point doing any further surgery.

To say I was angry would be the understatement of the year. I was enraged, and more so, absolutely heartbroken. I could not believe that someone would just give up on Keeley like that. That she wouldn't even give her a chance. I could not believe that I had to sit there and try to prove my daughter's worth.

I am not even going to start on all the reasons why we should 'bother' because I don't need to. She is a human being. Of course we should bother.

Along this journey I have found that losing hope is only too easy, holding on to hope, on the other hand, is a much harder thing to do. But we must not ever lose hope. We must never give up. So for now, I am holding HOPE in my heart, and am continuing to search for answers..........