Our Pal - Amelia-Grace C

Story written 2010

Amelia was diagnosed with stage 4 Neuroblastoma in January 2009. She has always been a very active girl filling her week with drama, dancing and singing lessons, as well as Brownies and of course school! That’s why when she complained of pain in her legs I simply thought she had overdone things. Unfortunately the pain persisted and after a number of blood tests, scans and x-rays and a week in hospital, she was diagnosed with stage 4 Neuroblastoma. Understandably this came as an absolute shock for everyone, least of all Amelia, who is very intelligent and questioned everything that happened to her. The consultant told us there was a poor prognosis with only a 20-40% survival rate and a high relapse rate which would be terminal if it happened. She started on her first lot of chemotherapy a few days later and continued an intensive routine of chemotherapy every 7 days for 3 months. Amelia’s cancer had spread throughout her body form the main tumour which went from her adrenal gland on her kidney up to her lung, however after 3 months of chemotherapy her bone marrow appeared clear and the main tumour had halved in size. Feeling positive, she went into her 10 hour surgery to remove the main tumour.

Amelia was told that she would be in hospital for 2 weeks after her surgery but through sheer determination she got up and walked on day 1, had her epidural out on day 2, and was discharged home on day 3, which seemed to be a hospital record!! That just sums her up though. Next she had stem cell harvest and transplant with more high dose chemotherapy. This really knocked her and she suffered isolation for 6 weeks which was really tough on such a sociable child, but like anything she got through it and moved onto the radiotherapy. She said this was easy in comparison, even though it burnt her skin. She would skip up to the machine and jump on it with her summer dress and no hair – the staff used to love her coming in so smiley. After the radiotherapy we knew the 6 months of tablets would seem relatively easy and Amelia was quick to get back to school and Brownies.

In January this year Amelia started to develop pains in her stomach and legs again. She had been so amazing throughout her treatment that we couldn’t believe that it was cancer, so we put it down to tiredness etc for a few days. However, the pain persisted and the hospital confirmed that she had in fact relapsed.

Our worst fears were realised and in total shock we went through the limited options, none of which were curative. We decided that if the choice we faced was quality over quantity of life, we would choose quality for her. She is so active and full of fun that we wanted to ensure that she had the opportunity to have life experiences rather than being in hospital in the hope that she may get an extra couple of months. We immediately planned a trip to Euro Disney and various trips to theme parks etc which she has loved!

She is still fighting on and everyday whatever it may bring is amazing and filled with laughter and life.

Update 25th June 2010

After a brave and valiant fight Amelia-Grace became an angel last night peacefully with her mummy and daddy around her. The most amazing young girl that many will ever meet forever in our hearts.

Update 23rd June 2010

Amelia has been much more peaceful today, but sadly more poorly too. I have spent the morning sitting in her room with her sleeping which was lovely. She is sleeping most of the time now but looks like a little angel.

Update 17th June 2010

Amelia has had quite a lot of pain today. Unfortunately her pump came out but she was very good and let the nurses put another in without much of a fight. We are upping her painkillers a bit to try and get on top of it. Someone came to do healing, Amelia told her to do reiki… on daddy’s knees so he could take up running again… how sweet is that.

Update 15th June 2010

Well the angels (in conjunction with some very generous earthly beings!) have brought us the most amazing beach house to stay in at this difficult time. Every room overlooks the beach, sea, or the harbour, with Amelia’s room having the most wonderful view over the white sands of sandbanks, the purbecks, and over to the Isle of Wight. She has become very ill over the last week but in her times of lucidness is still her cheeky self.

Thank you for all your kind messages and continued support. I will take some pictures and upload them to show you her little peace of heaven on earth.

Update 14th June 2010

Amelia has had another day in bed. The doctors and nurses have been working out her medications and she has a new pump for the pain.

Thanks for all your wonderful messages.

Update 9th June 2010

Well the positive thoughts have obviously worked in many ways, as after 4 days of mainly sleep, Amelia woke up last night and had a laugh with us, watched some dvd’s and read her magazine. She has been much less sleepy today and just had a pump fitted for her sickness.