Rachael’s Story
Posted by Ross in 
Hi, my name is Lindsay and I have been married to Barry for nearly 6 years. We live in Perth with our daughter, Rachael, who is nearly 5 (going on 14!!!). Rachael was born on the 3rd September 2006, small but healthy. In around March 2007 we started to wean Rachael onto solids. All was going well to begin with but when I took her to be weighed at the health visitor clinic they mentioned that she hadn’t put on much weight where as her weight gain had been normal up to this point. They arranged for her to be weighed again 2 weeks later but again she had not put on enough weight so we went to see her GP.
Her GP wasn’t concerned but decided to refer her to the Paediatric Dept at our local hospital. The only problem we were having with Rachael was that at food time, she would eat but it was as if food was boring and she was more interested in playing. So, meal times became a bit of a battle – me shoveling the food in and Barry keeping her entertained or visa versa.
Anyway, off we went to Paediatrics. They did every test that includes ‘failure to thrive’ (caeliac disease, cystic fibrosis) as a side effect but all the tests came back as normal. We were to give her high protein milk, which put a little bit of weight on her, but not enough. Then, one weekend in July 2007 we noticed that her left eyeball was wobbling. After continually watching it over the weekend to make sure we weren’t going mad and seeing things, I mentioned it to the children’s orthoptist (eye doctor) at work as at the time I worked in medical records at the hospital and she arranged to see Rachael.
After seeing her she asked a children’s eye consultant to also see Rachael and he decided to send her for a scan at Ninewells Hospital in Dundee. The paediatrician had also decided to do more blood tests on the same day as the MRI scan. By this point, we were getting so fed up with it all and had basically decided that if nothing was found with the scan we would just take Rachael home and ‘fatten her up’!!! Little did we know that later that afternoon our world was going to come crashing down around us!!! I just knew there was something bad coming – I don’t know if it was because of my work or seeing it on tv, but then I overheard the paediatric doctor asking the nurse who was looking after Rachael if there was a side room available.
So, we got called into the side room and told that a mass had been found in Rachael’s brain. All I remember from being in that side room was asking if Rachael was going to die. Rachael had to stay in the ward at Ninewells that night as they decided to leave the cannula in her hand in case they needed it again.
The next day – I will never forget that it was the 7th August 2007 – we had a meeting with a paediatric oncologist and a paediatric neurologist to be told, “yes, a mass had been found’’ and we had to go down to the Sick Children’s Hospital in Edinburgh that day. I just remember thinking “no, we can’t go today, I have to see our families and I have to pack. No, we can’t go today”. Anyway, they gave us a days grace and we went off to the Sick Kids the next day for Rachael to have a biopsy to determine what the mass was.
To cut a very long story short, Rachael was diagnosed with a hypothalmic ependymoma. She had chemotherapy fortnightly for just under 2 years. The tumour was about 7cm to begin with and had shrunk down to just under 2cm when the chemo was stopped as it wasn’t having any affect anymore.
Another long bit of the story, which I won’t go into detail about to save time but after being told for just under 2 years that the tumour was inoperable, Rachael had surgery on the 9th July 2009 and 70% of the tumour was removed and found to be dead cells and scar tissue.
Rachael has just been absolutely unbelievable through this whole journey. Because she was so young (11months) when she was diagnosed she has just taken it all in her stride and because she didn’t understand that chemo can make you sick, she was rarely sick and basically sailed through chemo, until near the end when her portocath started to misbehave and had to be replaced twice and the chemo started to take its toll on her body and her blood counts. She has amazed everyone involved in her care and we believe her very determined attitude has got her this far.
Because of the surgery and position of her tumour she has been left blind in her left eye and has very restricted vision in her right eye. To see her though, you would never guess that there was anything wrong with her sight. She seems to be able to adapt very easily. She has 6 monthly MRI scans and regular eye check-ups and is just about to start primary school in August this year. We have had one hell of a journey to get where we are today and I don’t think things will ever be the same again. We still tend to live day to day, but our brave, beautiful little girl keeps us going and THERE IS LIGHT AT THE END OF THE TUNNEL!!!!!!
Stewart Family, Perth, Scotland
