Life with Georgia:
Georgia was born on 26th June, 2013, in Boston, Massachusetts. She was 18 months younger than her brother, Finley, and from day one, she tried to keep up with him in every way.
Very early on, we realised Georgia was a bundle of energy and fearless; she took her first steps at 9 months old and didn’t stop moving. At pre-school, her teachers commented that she was often tripping over – I never gave it a second thought – she was always running, climbing, skipping somewhere. I now realise that was the first signs of the tumour we had no idea was growing in her brain.
She loved going to the park, climbing as high as she could, swimming, and her dog Spike.
Georgia completed our family; I loved having a boy and a girl, and with them being so close in age, they were like twins. Life was busy, but wonderful and I felt so lucky.
Early Symptoms
In Spring 2017, we relocated back from the US to the UK, which was a tough move on all of us. Gary stayed behind for several months to finish up work, while I sorted out somewhere to live and schools.
During this time, Georgias behaviour became increasingly difficult – refusing to go to sleep, and crazy intense tantrums. I put it down to all the big changes, and missing her Dad.
She started school in September 2017, and soon after, Gary joined us. We all settled into more of a routine, and her behaviour began to improve. We enjoyed a few months of relative calm, and I treasure the wonderful happy memories of that time.
One night at bedtime, Georgia said she couldn’t see the book we were reading properly. I made her an eye appointment – she never made it to the appointment.
On 18th April 2018, Georgia was sent home for school as she was dizzy. Gary went to pick her up, and reported that she was running around and completely fine.
I had a nagging feeling, and as it was my birthday, I was looking for an excuse to leave work! I got home to find a bright, happy Georgia. We had a wonderful day in the garden, enjoying the first signs of Spring.
That night, Gary and I talked about plans for the future. Our mammoth trans-Atlantic relocation was over, and there was so much we were looking forward to. We had no idea our world was about to come crashing down.
Diagnosis Day:
The following morning, I had an early start, so Gary did the school run. We soon got a similar phone call saying that Georgia was again dizzy. This time Gary took her to the GP, at which point an ambulance was called. I drove to meet them at the hospital but was not at all concerned – she got out of the ambulance and ran to me, perfectly happy.
Several hours of neurological tests revealed nothing, so they decided to do an MRI. Looking back, I was either naive or in denial. After the MRI, we were told Georgia had a brain tumour. I remember immediately thinking ‘she can have chemo, she’ll fight this.’
Soon after, we were transferred to the John Radcliffe in Oxford, where I met the only bad Doctor I encountered on this journey. At about 1am once I had finally settled Georgia down, he took me into a room and told me the tumour was in her brain stem. I had absolutely no idea where the brain stem was, or what this meant. I lay alone in a hospital bed at 2am, Georgia finally asleep, and googled brain stem tumour. DIPG kept coming up but surely it couldn’t be that? Theres no way it’s that bad. It can’t be.
The following days:
The following days are a bit of a blur. We had numerous meetings with various doctors. In a meeting with the most senior Doctor, I looked him in the eye and asked, “are you telling me Georgia is going to die?” and he answered, “she’s not going to be an old lady.”
To this day, I wish they had given me direct answers to my direct questions.
The answers we got, implied we had hope.
Gary had worked for many years in Biotech in the US and had some great contacts in cutting edge cancer research. He worked tirelessly talking to some of the top Doctors and researchers both in the UK and US. Because we were not given a straight answer – DIPG is universally fatal, and Georgia is going to die – we invested so much time and efforts into finding a ‘cure’ and getting her into the best trials.
Finally on Day 5 at the Radcliffe, we were told she had 9 to 18 months to live – but by that point, I had convinced myself that there was a trial out there that would save her.
Radiotherapy:
We started Radiotherapy – in my mind, it was something we were doing whilst Gary researched every possible solution. Georgia hated, and had not tolerated well, any of the general anaesthetics (or ‘special sleep’ as we called them) she had endured at that point. She would have to have a general anaesthetic every day; I couldn’t even fathom going through that every day. We were told that some children do manage to lie still, but it was unlikely at age 4, especially given what a bundle of energy she was.
Determined as ever, Georgia picked out a special teddy and blanket, and she lay still without anaesthesia. We drove to Oxford five days a week, for 6 weeks, leaving the house at 6.30am every day, and she lay still with that awful mask on her face.
Radiotherapy finished on 26th June, her 5th birthday. We had a pirate themed party with all the nurses we had got to know so well over the previous six weeks.
We tried to make the most of life that summer; she had a wonderful birthday party, we went on holiday with her cousins, trips to the zoo, and even managed a camping trip. She also met Mr Maker, thanks to the Starlight charity.
It became apparent that radiotherapy had not had much impact on the tumour, and as her condition deteriorated, so did our hope that she would beat the odds. We were accepted onto a trial in NYC, but by then she was too ill to travel. She was on ONC-201 that we got from Germany, and a bunch of other herbal supplements, but we watched helplessly as she declined before our eyes. Our beautiful, radiant daughter, who was so full of life, was no longer able to walk, her speech was very slow, and eating was difficult.
DIPG really is the cruellest of diseases. Georgie was so aware of what was happening to her, and she was so angry. One night in October, while she was still able to talk, she asked me why she wasn’t getting better. She said, “I’ve lied still with the mask, I’ve swallowed all the big pills, I’ve done the special sleeps and I’m not getting better.”
How do you tell a 5-year-old they are going to die?
Hospice
Georgia was clearly in pain, and it was decided that it was time for a syringe driver, and so began the next 8 weeks of daily hospice at home visits. Initially that offered some respite, and I think her pain levels subsided, but as the weeks wore on, we were in an endless cycle of upping doses, changing medicines and trying to stay ahead of her pain.
In mid-November, we went for a ‘respite stay’ at the Hospice. By this point, she needed 24/7 care, and I was exhausted from being up most of the night, and continually monitoring medication. As soon as we arrived, I snuggled up to my beautiful girl and didn’t have to think about anything other than just being her Mum. I am forever grateful for the care shown to us by the Helen House nurses. It may sound strange, but those last 10 days spent at the hospice are some of my best memories out of the entire 7-month nightmare.
I had always insisted that she would die at home, but once we arrived at the hospice, she went downhill rapidly, and it just felt right to stay there. As her condition deteriorated, we swung between desperately wanting her to live, but also wishing her suffering would end.
On 28th November 2018, at 6.10am, Georgia took her last breaths. She lay in our arms, and I was able to reassure her that she was going to heaven and that there would be no more suffering. She had drifted in and out of consciousness for two days, but in that moment, she opened her eyes, lifted her head off the pillow and looked into our eyes to say goodbye.
Life without Georgia will never be the same. The people who say grief gets easier over time, haven’t lost a child. The missed milestones and missed opportunities, is a constant reminder of their absence from this world. Things that should be joyful – Christmas, birthdays, going on holiday – are all marred by her absence. She should be here.
Georgia had such a bright future ahead of her, and DIPG took that away.
Despite the heart wrenching sadness, I do know I was very lucky to be Georgia’s Mum. She was brave, fearless, funny and she taught me so much. There is not a single thing I wouldn’t do if it meant I could have her back, but I can’t, so all I can do is be eternally grateful for the 5 years she was with us.
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