Updated: Jun 14
Megan was born on 12th March 2003. As we already had Joe, our then two and a half year old son, our family was now complete. Megan was a very happy contented baby until she was about four and a half months old We noticed that she started to scream a lot during the night as if in pain, we were convinced she was teething. A few weeks later we noticed that she wasn’t pushing herself up in the cot or using her legs very much. After another few weeks she woke one morning and seemed unwell. Throughout the day she seemed to get worse so I took her to the GP. We were sent home, having been told she had a viral infection. A few hours later her breathing was laboured and another GP sent us to A & E. After various tests Megan was diagnosed with pneumonia. We were devastated as our little girl was admitted to hospital for IV antibiotics. Megan was given a nebuliser every six to eight hours, IV antibiotics and placed on oxygen to help with her breathing. After a couple of days she hadn’t improved and was sent for an ultrasound of her chest and lungs. The scan showed her lung had collapsed and she was very unwell. The doctors decided she needed to be transferred to London’s Royal Brompton Hospital to have a chest drain inserted.
We were taken to Royal Brompton in an emergency ambulance and Megan was taken immediately to theatre. The doctors inserted a chest drain to drain the fluid and re-inflate the lung. She was in the high dependency unit and seemed to be improving. For the first time in a week we felt relaxed and confident she was on the road to recovery. How wrong we were. On day four Megan was very unwell and the doctor ordered a CT scan. After two hours I was told that they thought Megan had neuroblastoma. Of course I didn’t have a clue what that meant until I heard the words tumour and cancer.
Megan was transferred to Great Ormond Street Hospital the next morning. Megan had to be “staged” and have lots of tests to determine the next step. By this point Megan was very ill and went into respiratory arrest. She had to go to PICU and she was put on a ventilator. Her oncologist said that she must start chemo straight away as her tumour was compromising her breathing.
After ten days she was taken off the ventilator as the chemo was working and reducing the size of the tumour. Further tests showed Megan was a “stage 4 neuroblastoma” this was unusual for a five month old baby.
Megan had three days of chemo, every twenty-one days for four months, then five days of chemo every twenty-one days for two months. Just after Megan’s first birthday she had the tumour removed. The surgery was very risky as the tumour was wrapped around the aorta and spine. The surgeon removed what he could but Megan still has some residual tumour that is inactive.
Unfortunately due to the location of Megan’s tumour, she has been left paralysed from the waist down. This was caused by spinal cord compression. Megan has also developed scoliosis (curvature of the spine) as a result of the tumour. She now has metal growth rods that were inserted when she was three, to try and keep her straight. Every six months she has more spinal surgery to make the rods longer as she grows. When she is about twelve she will have her spine fused.
We have been told by Megan’s oncologist that the chances of her relapsing are less than 1% but we still live for the day. Megan has a neuropathic bowel and bladder and we have to catheterise her four times a day to empty her bladder and a suppository every other day for her bowels. She has extensive physio four times a day.
Despite all her problems she is a happy and confident little girl and she attends mainstream school.