Story written 2012
Amelia is 4 years old. She started developing a noticeable wobbliness, her left hand was shaky, she kept falling over and her coordination deteriorated over a fairly long time. After several trips to the doctors and a blood test proved inconclusive we were referred to a paediatric consultant at our local hospital. She was seen on the 30th January and sent for an MRI scan the next day. We were told the news a few hours afterwards that she had a brain tumour, and discovered the next day that it was a fairly large brain stem tumour. A few days later we were transferred to the John Radcliffe Hospital in Oxford who have a dedicated neurology department at the Children’s Hospital.
A second MRI of her spine showed no tumour advancement to this area, and she was then operated on. The operation had two goals – one was to biopsy the tumour, which produced 4 tissue samples during the operation. The second was to try and remove any tumour other than the samples – which they were unable to do. After several days we were told that the samples showed a grade 2 Diffuse Astrocytoma, indicating that the core of the tumour was likely grade 3 or 4. We were then told that there was no chance of survival of a tumour of this type.
Chemotherapy and radiotherapy were offered, however we were told that a median increased survival of some 4 weeks was achieved after this treatment. We declined with the reason that we would rather spend quality time with our daughter than spend more weeks in hospital for such a dismal outcome. Amelia returned home unable to walk, she had speech problems, she was half paralysed and generally in a very bad state.
But she got better. Amelia showed us all how amazingly strong and brave kids can be, and after a few weeks we decided that we couldn’t sit and watch her die. The local community fundraised and sent Amelia to the Burzynski clinic in America. Treatment helped and the tumour became stable, and Amelia even managed to start school.
Sadly things did not remain stable and Amelia has deteriorated quickly. Today Amelia went to school for the last time, she was unable to speak as her speech has now gone, she is mostly paralysed, she can not sit up, she is loosing the ability to swallow and her breathing is getting worse. Tomorrow she will be transferred to a hospice.
Amelia has touched many people, both in her local community and around the world.
Update 6th January 2013
Amelia, our beautiful little girl, left us this morning at 9.50am, holding both our hands as she took one last breath. It was peaceful, quiet and without pain or suffering. Chantal and I had told her only minutes before that it was OK for her to go, to be free. Now she is.
Although there is a huge hole left in our lives, Chan and I will be strong and support each other through this awful time. Charlotte will have all our love as our daughter, and when she is older we can tell her about the amazing big sister she once had. Our hearts are shattered into a thousand pieces.
Thank you, everyone, for your love and support. Our lives will never be the same again.
Update evening of 5th January 2013
Amelia has slept almost the whole day. She has slept peacefully, only occasionally requesting a drink which we are able to get into her. She was awake for an hour or so at about 5pm which meant she could be with us at dinner time, and Chantal established she can eat cheese sauce and she ate lots of it. This is really good news as it avoids us having to put a feeding tube in.
Amelia is calm, so much calmer without the steroids. It appears they had passed the point of being effective so their removal hasn’t been drastic. The doctor believes we might now have a few days of stability and then a continued decline until the end. We don’t know how long but it might be another week. This is good news as it allows us time to talk to her and also be together as family without Amelia being in pain or discomfort.
Update 5th January 2013
We made the decision yesterday to not continue with Amelia’s steroid dose. This has two potential effects – one being that she will no longer be so hungry (she can no longer swallow anything really, just milk and little bits of chocolate) but also this will likely accelerate the effects of the tumour pressure inside her brain. Her quality of life is so poor that we made this horrible decision.
Amelia is now barely with us. We had more friends and family visiting yesterday, mostly for the last time. We are not sure if she will last the weekend but she has always been such a fighter and always amazes us. She is still the feisty, brave little girl inside, just trapped inside her body as it shuts down.
We know we don’t have long now, but the most precious time is being able to spend a few minutes each day whispering in her ear, telling her we love her, that we are proud of her, and that she is so incredibly brave. I know she is listening.
Update 3rd January 2013
We are settled in Naomi House, due to the deterioration Amelia is not expected to return home. We are exhausted but finally this evening we seem to have Amelia’s drugs at the right level. She has spent much of the day screaming with discomfort and frustration and there is only so much of that we can take.
Update 29th December 2012
Amelia is sadly losing control of her body and this has been causing a number of problems, and we had to urgently get her seen to at the hospital earlier. Fortunately, after a lot of effort, these problems are now under control. Amelia is calm, relaxed and I got a big ‘thumbs up’ from her again when I asked if she was OK. She was very tired and very spaced out, but OK.
Tomorrow morning we will go back into the hospice, how long for is largely depends on how Amelia does. It might just be for a few days and we then come home, or she might not come home at all. We just don’t know. She has definitely been getting worse over the last few days but it just depends if we can stabilise her again.
Update 26th December 2012
Christmas day went pretty well, we really tried our hardest to pace out the day so that Amelia didn’t get overwhelmed by everything. She gets easily upset and frustrated if too much is going on – but she did last the day pretty well. We had several relatives here to help and were able to relax a little during the day which was great.
By late afternoon we really noticed Amelia deteriorating, to the point where we were getting seriously concerned. We had stopped her steroid dose the day before and we were worried this was having a negative effect – so decided to give her a dose before bed and then repeat in the morning.
By late evening she was unresponsive, confused, gargling a lot and generally pretty bad. We got through the night, but by the morning she was really struggling going to the toilet so we ended up spending the morning in hospital (again!) and eventually got her to go after a lot of effort!
Sadly she does seem to have deteriorated somewhat, but we have increased the steroids again in an attempt to suppress this as much as possible. It is clear the tumour is getting to a critical point so we are just managing it as best as we can. Amelia has again become very aggressive and angry, we are unable to understand what she is trying to say most of the time, and she just gets angry when we keep asking her to repeat herself.
Update 23rd December 2012
Amelia has been pretty good – in fact probably better than we thought she would be at this point. It seems all the drugs she is on have done their job and she is comfortable, and we still get the pockets of time when she is chatty and responsive. She is definitely tired a lot of the time and this might explain why she is unresponsive at those times.
One of the really big difficulties of living with this is trying to establish what is the drugs causing a ‘temporary’ lapse in symptoms, and what are the symptoms showing themselves. It is a bit of hit and miss with this – sometimes we see things that are gone again after a short while, and some things have stayed, like the paralysis.
Amelia’s left hand side seems a lot better at the moment. She is using her hand to open presents and hold a straw, point to things and generally anything that doesn’t involve lifting things. It isn’t particularly shaky and we can only assume the steroids she has been on have worked. We actually stopped the steroid dose entirely today, so will be keeping a close eye on her.
Organising Christmas has been a tricky affair. We’ve got lots of help from family which has been brilliant, but everyone has been so nice and we just haven’t had the time or energy to do the normal card writing, present sending or all the other things you do at this time of year. Our lounge is full of literally hundreds of cards – many from people we have never met – and these have all made Amelia’s face light up each time one is opened. A big thank you goes out to everyone who sent us a card or letter via Post Pals. People truly can be so, so kind. One of them was a letter from a fairy, others had photos of Amelia or messages of support. We really do seem to have touched so many. Thank you, from the bottom of our hearts. You people are all amazing.
Update 18th December 2012
Thank you for arranging the post and the balloons (and maltesers!), Amelia and Charlotte have loved opening it all. We are going to be back home tomorrow afternoon for Christmas as they feel Amelia has stabilised. It is common with these type of tumours to have a rapid decline and then the child stabilises for a little while before the tumour grows again. We hope to have Christmas at home and then return to the hospice when needed.