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Our gorgeous daughter Amelia passed away suddenly and unexpectedly but peacefully on Sunday 28th October 2018 aged just 13 years old. We miss her so much. She brought so much happiness to everyone who met her and was the strongest ,most loving, inspirational person we have ever met. We love you so much Amelia - fly high gorgeous girl xxx
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So thank you to everyone for all your support throughout 2017. Amelia has now started on the CBD oil and about to start on the Ketogenic diet - just waiting to meet with the dietician shortly. We will continue to support The Children Brain Tumour Research Centre in these two areas as there really is some huge
We are very excited to be fundraising this year as the Childrens Brain Tumour Research Centre is currently starting research on something that we are extremely excited about. CBD Cannibidiol ... in conjunction with the Ketogenic Diet. There is a little boy (makewilliamwell.com) who despite being told his tumour has gone beyond any further treatment the NHS can offer , tried the Ketogenic Diet in conjunction with CBD Cannibidiol .....and his tumour has shrunk by 2/3rds !!!! The CBTRC has now raised £100,000 to start the initial research and if successful will hopefully try clinical trials. This is the only treatment currently , should Amelia's tumour grow, that is a potential option for Amelia..... and all money raised goes to this particular research centre in Nottingham so we are soooooooo hoping we can help this research... The first treatment that we have seen that we are getting excited about for Amelia's type of tumour.
What is Amelias Appeal?:
Amelia, is 11 years old and was diagnosed in Oct 2009 at 4 years old with an ‘extensive’ inoperable Ganglioglioma brain tumour in the brain stem, spinal cord and cerebellum . We are however thankful that it is a Grade 1 slow growing tumour .
Although quietly spoken, Amelia is a strong determined young girl and is the bravest person I know. She never complains and is an extremely caring, loving girl. She adores her little sister Jasmine and Jasmine just idolises her big sister. Anyone who meets Amelia always tells me what an adorable girl she is and how she is inspirational to them. She can be very shy in large groups but get her at home with her sister, cousins or friends and you will find her putting on shows, singing, dancing and makes Jasmine work very hard to perfect dance routines !!! . She adores her music and loves any films with singing and dancing. Once you get to know Amelia you will see that she has an incredible sense of humour and loves joke shops and playing tricks on people ..so watch out !
The tumour causes all sorts of problems such as a paralysed vocal cord, very low hearing in her left ear, swallow problems, balance problems and probably the worst side effect is problems with her breathing. This has lead to Amelia having to sleep every night on a Cpap ventilator and spending over 21 nights in intensive care in 2011 and 23 nights in 2012 and more recently nearly 8 weeks very poorly in intensive care in 2014 ! Amelia has been unable to walk since being in intensive care in 2014 so is currently in a wheelchair but is trying so hard to get her legs working again.
After being diagnosed Amelia’s tumour remained stable for 2 years until Aug 2011 when the tumour showed some growth. She completed 18 months of weekly Vinblastine chemotherapy (70 sessions!) in April 2013. Amelia continues to have MRI scans every 6 months now and thankfully the tumour has remained stable!!! Her latest scan was in September 2014 and this showed no significant change to the tumour.
Lets pray and hope it stays stable for a long time to come !!!!
Currently there is very little that can be done with an inoperable brain stem tumour and thankfully Amelia has a grade 1 slow growing tumour that seems stable on all the recent scans. We have tried the chemotherapy but this didn't shrink the tumour at all. Radiotherapy is only other treatment option but this is something we have decided against as all the research we have done seems to show more harm than good is caused from radiotherapy and it doesn't seem to attack grade 1 slow growing tumours so has no benefit to trying this.
This is the reason why I would like to raise as much money as I can for the Childrens Brain Tumour Research Centre in Nottingham to hopefully try and find a cure.Please help me by donating as much or as little as you can…every penny helps. Even if you can’t afford to donate please could I ask you to help me raise awareness of brain tumours and the lack of research by telling all your friends and family. Thank you so much for all your help and support. I really hope one day we manage to find a cure for this devastating disease.
Update Dec 2014..... Amelia has had a tough year since spending so long in intensive at the start of the year. She is now fed via peg tube and eats very little. However the peg feed is doing the job and she has gone from weighing 17.9kg in jan 2014 to 24.4kg in Dec 2014 ! Her muscles have also stayed very weak - we had hoped that by december Amelia would't have still been dependant on her wheelchair but we will still work hard next year to try and get her walking again. She has just today been fitted for splints to try and help support her legs to walk. Her neck is probably one of the things we have struggled with the most. Despite lots of physio this still remains very weak and Amelia is unable to hold her head up straight. This causes lots of pain some days and we don't believe this helps with her balance. Amelia missed the last two weeks of school because of chest infections but seems to be getting over this a little over the christmas period. She is such a fighter and she has managed to get through what has probably been her toughest year yet and lets hope that all the fundraising will help find a cure soon. 2015 is a new year and lets hope its a great one for Amelia and all the children out there fighting a brain tumour. Too many brave children earned their wings this year and my heart breaks for their families. A CURE IS NEEDED so THANK YOU for your HELP and SUPPORT..lets hope we can help a little towards finding a CURE .!
Update April 2014 .........Amelia has recently spent 7 1/2 weeks in intensive care at Addenbrookes hospital. She was rushed to our Hunchinbrooke A&E by ambulance at 2am on Wed 29th Jan 2014. As we arrived into A&E Amelia lost consciousnous and had to be intubated and put into an induced Coma. She had an emergency CT Scan which hankfully showed no change in the tumour. She was then sent by CATS ambulance to PICU in Addenbrookes a few hours later. She had caught he RSV virus which is nothing unusual to any normal child but since her chemo finished in April 2013 she had lost so much weight and was so fragile. We had been waiting for a gastrostomy for a while to help put some weight on and we had been hoping all winter that she wouldn't catch a cold as we knew she was too weak to fight it. She remained incubated on the ventilator for 10 days but the Drs and Nurses were amazed at how she was managing to colour and paint which is not normal whilst you are intubated. She was one true fighter. She had a gastrostomy peg operation whilst she was incubated to save her having to have a general anesthetic and also had an MRI to check the tumour. Good news was that her MRI was no change to the one in Nov 2013. She came off the ventilator on Friday 7th Feb and seemed to be doing very well for a week but then by the end of the following week started to go downhill again. Her CO2 levels were dangerously high and her oxygen very low. She lost all her strength and could not even move her toes so had to be intubated on the ventilator again on the Sunday 23rd Feb. She remained on this until Friday 28th when they took her off the ventilator and she remained very weak. She was just pooling saliva in her mask at night so we decided to try some anti saliva medicine that we had researched . We assumed if her night time mask was filling so much with saliva then it could be dripping ito her lungs so we wanted to try and dry it up. The first thing we tried (Hyoscine patch) didnt work it was giving her double vision and headaches but eventually we tried Glycopyrolate on 12th March and that seemed to dry up the secreations and she started to get better. We were discharged from hospital on Thursday 20th March. It is going to be a slow process to get her back to normal strength as she has spent to long in bed but she is a fighter and will work hard. She is currently in a wheelchair but can walk a few steps around the house. Her neck muscles are also very weak so her neck can really hurt her by the end of the day. We are just taking each day as it comes but has highlighted once again how desperate we are to find a cure for this dreadful disease.
Update Feb 2016 - I am also aware that I have not updated for a little while on here so whats been happening for the past 6 months... well... her MRI in September last year (2015) showed the tumour was stable but a large cyst has appeared growing off the tumour so October saw Amelia have surgery to drain the cyst but also leave a little canal/reservoir in so that if the fluid built back up they could drain it again without the need for a general anaesthetic. December - we decided to go away for New year so travelled to Portugal on boxing day but on our stopover in spain for 1 night Amelia had a problem with her breathing again and ended up in a spanish hospital in Salamanca. She had 3 days of IV antibiotics and then we were allowed to carry on to Portugal to get a little break for her. January 2016 - another MRI and again great news that the tumour was stable but the cyst had refilled so we had to it refrained but because of the reservoir left it was a very simple proceedure - although amelia was incredibly brave as allowed them to put a needle into her head without any pain relief or numbing cream whatsoever.. she never ceases to amaze me. February 2016 - Amelia has been building up her strength so well so was such a shame to end up in hospital at the end of the month because her gastrostomy peg and perished as it had been in for 2 years so had to have another operation to change her Peg.
Interesting Brain Tumour Facts:
Brain Tumours are the BIGGEST CANCER KILLER of UK children, this has overtaken Leukaemia.Brain tumour research receives less than 1% (0.7%) of national cancer research funding in the UK.450 children are diagnosed with brain tumours every year in the UK. In fact, we lose more children over the age of one to cancer than to any other disease.In all, Brain Tumour UK believes that around 48,000 people each year will develop a brain tumour in the UK.Forty per cent of tumours diagnosed are primary tumours i.e. tumours that start in the brain. In addition, 20% of all cancer patients go on to develop a secondary tumour (metastasis) in the brain. Brain tumours are the second most common cause of cancer mortality in adults. Brain tumours are the most common solid tumour in children.Of those children diagnosed with a brain tumour only 20% survive 5 years beyond diagnosis - a higher mortality rate than that of meningitis
