Hi, My daughter Megan was diagnosed with a inoperable brain tumour in April 2008. The tumour a Fibrillary Astrocytoma grade 2 was sitting in the front left side of her brain and was the size of a small Orange. She was only 4 when we found out. The only symptom she had was a small tremor in the right hand while drawing. We took her to our doctors twice only to be told we were being over anxious parents and it was just Megan getting use to writting with her right hand.

It was not until a day after Megan's 4th birthday , she was at nursery and a visiting physiotherapist was at the nursery seeing another child noticed Megan was not using her right arm  and got the teacher to calls us. She asked us to take Megan to the Childrens Hospital Birmingham. The Hospital A +E told us it might just be a trapped nerve and to watch her over the weekend and to return on the Monday if things did not improve.

Monday came and we took Megan back. Over the weekend Megan could no longer use her arm. We were greated by a neurologist who arranged for Megan to have a CT scan then a MRI Scan

She was then admitted. About a hour after the MRI scan the Neurologist and a senior Reg Oncologist  called Shawn came to see us, my wife and i knew this was not good news. We were told Megan had a mass the size of a orange. We were also told it had very opaque shape so could be a bleed or a tumour and would need a biopsy doing. Megan had to have a special hat made while under anaeshetic to aid getting the biopsy. With this procedure and being easter weekend Megan's biopsy was not completed until 1 week later. Megan had her biopsy done on a Monday morning. On the Tuesday after the biopsy we had a phone call any parent would not want. We were told to attend the Oncology Clinic on Thursday to see a Consultant called Dr Engish. He was really nice, he told us megans tumour was in a position that made it inoperable but it most likely had been there since early development in my wifes womb. He also asked us if Megan had been ill in the last 2 years. We had all had a virus 9 months before. Most of us were better within 2 weeks. Megans virus continued for nearly 8 weeks, again my wife had been told when she took Megan to see the Dr that she was being a over anxious mother and all Megan had was a cold.

Megan had to have a Hickman line inserted and started her chemo the day after. Everytime she had chemo her neutrafil count fell and she ended up in hospital, on one occasion she was so poorly she was put into HDU for 10 days. The Chemo had to be stopped after this as even the consultant thought she was close to dieing. Out of the 9 months of chemo megan had only managed one quarter of her treatment .

It was then decided radiotherapy was needed. Megan had a 6 week course of daily anaesthetics again having to wair a special mask that had meen made for her to pin point the centre of the tumour. At the end of this treatment Megan had a fit and was rushed by blue light back into the Childrens hospital. The fit lasted close to 90 minutes.

Over the next year Megans tumour started shrinking and she only had to attend clinic after the 2 monthly scan. Dr English told us mid 2009 that the scans were showing concerns. In October 2010 after a scan we were called into see Dr English. He told us the tumour had started growing aggressively and there was nothing else they could do for her. I asked him how long she had left and he replied within 12 months. My wife and i were numb, we did not expect to hear this.

In early June 2010 Megan started sleeping more and more so we took her again to see Dr Engish. He warned us she had days to live. On the 3rd July Megan slipped into a coma. My wife and i looked after Megan at home. 

On the 13th September at 20.52pm Megan went into Respiratory arrest and passed away.

A massive hole remains in my wifes and my heart, this should not happen to anyones child. Why could not it had been me that had this tumour i keep asking myself. The pain of loosing a child never leaves you. I sill feel the same after 5 years 

That must be such a painful story to retell, thank you for sharing it. It can't even be possible to imagine what your family went through. 

My daughter was 13 when she developed a Ewings sarcoma in her upper chest/shoulder. She went through a year of treatment including chemo, surgery and proton beam radiotherapy in the States. She was one sick kid for a while, but she made it through. She had her last chemo in February and has been on surveillance scans since then. So far, all clear.

Personally I've found the aftermath of treatment as stressful and traumatic as the time she was in hospital. The fear that the cancer might return is the worst, it's like a sword hanging over you. Keeping it together as the 'strong man of the house' isn't always easy. Over the last two years I've met many other guys in the same situation. You want to be the dependable, resilient father and inside you are all over the place, but you have to keep up appearances. I don't know how people who's kids didn't make it, or have long term disability or illness cope with it. Hats off to you.

That must be such a painful story to retell, thank you for sharing it. It can't even be possible to imagine what your family went through. 

My daughter was 13 when she developed a Ewings sarcoma in her upper chest/shoulder. She went through a year of treatment including chemo, surgery and proton beam radiotherapy in the States. She was one sick kid for a while, but she made it through. She had her last chemo in February and has been on surveillance scans since then. So far, all clear.

Personally I've found the aftermath of treatment as stressful and traumatic as the time she was in hospital. The fear that the cancer might return is the worst, it's like a sword hanging over you. Keeping it together as the 'strong man of the house' isn't always easy. Over the last two years I've met many other guys in the same situation. You want to be the dependable, resilient father and inside you are all over the place, but you have to keep up appearances. I don't know how people whose kids didn't make it, or have long term disability or illness cope with it. Hats off to you.