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03-8-2008 - Ashton's tumour Part 2

My mood while writing this blog: scared and apprehensive

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So we saw the Oncology Specialist, Dr Dalla Pozza, that Monday evening. The CT was booked for the next day, on Tuesday.

Ashton had to be NBM (nil by mouth) for a few hours before this scan. This was one of the hardest parts – Ashton was hungry, but I was not able to feed him. Me and Jason (my husband) took Ashton for constant walks around the hospital grounds, as this was the only thing that seemed to take Ashton's mind off the hunger.

Just before the scan, he was given an oral sedative through a syringe, but spat most of it out. He took all of the oral contrast though through a bottle, probably as he was so hungry. He had his CT that afternoon, but was not able to be still through all of it and the scan kept having to be stopped and started. He also had a few blood tests (to look for tumour 'markers' mainly) and another u/s scan. It was so hard seeing Ashton being jabbed by needles – all we could do was stroke his head/hair and say comforting words. He was such a brave boy though and they were able to to their tests.

On the Tuesday evening, Dr Dalla Pozza arrived on the ward and took us to a quiet room. He proceeded to explain the CT, u/s and blood results. He and his team of Oncologists suspected that Ashton had a 'terratoma' – a tumour that occurs during pregnancy. It is very rare but had been seen before at the hospital – the previous one being a boy of 2 years old, earlier that year. We also looked this up on the internet when we got home, and medical dictionaries – we learnt a lot about tumours, that not all of them were 'bad' or cancer. It was not necessarily the be-all and end-all. Compared to what else the tumour could have been, this was one of the 'better' ones – mainly because it is most often benign. If the tumour was a kidney tumour or one of the adrenal glands, they are more serious and often malignant. Me and Jason felt a little bit relieved – we were still anxious and scared, but hearing this made us more optimistic.

At this point the surgical team arrived – namely Dr Shun and his Registrar. They took over from that point and went on to explain the operation that would be required. As he explained what he was going to do – again, we felt optimistic – they were talking about solutions, and nothing worse so we felt great relief – it sounded like Ashton would be able to come through this, and they would be able to remove the tumour. As it was in his abdomen they would be able to remove it more easily, whereas if it was attached to his brain, or other part of his body, it could be much more difficult and risky.

Ashton was booked for his operation the following Tuesday, on the 8^th July. He would also need another CT scan, but under GA (general anaesthetic) this time – as they needed really detailed pictures of what the tumour was attached to, so Ashton had to be perfectly still (which is hard to guarantee with babies unless they have a GA). They also explained how Ashton would have a big scar afterwards, across his abdomen. We did not mind, as long as they removed the tumour. Dr Shun couldn't express enough how big the tumour was (he was guessing 800g at this point) and it would be a complicated operation, and would possibly need more than one operation to remove it. Dr Dalla Pozza went on to explain that if the tumour turned out to be malignant, Ashton would need chemotherapy. We would not find this out until after the operation when the biopsy would be done.

The following week passed by in a blur. To save Ashton's place on the ward, we could not be discharged, or we would have to go through Emergency again. So every day (apart from when blood tests, or reviews with the doctors were planned) we went home on 'gate passes', only to return by 8pm at night to save the bed. Jason took time off work. His boss was not very sympathetic at first and did not believe him, Jason nearly lost his job – but later on, his boss resigned and Jason was promoted.

It was very hard going back to the hospital every night. At home, we could almost pretend that Ashton did not have a tumour, that everything was 'normal'. It upset me every night going back, as it made everything sink in every time. I spent every night at the hospital with Ashton, sleeping on a sofa bed next to his cot. There was only room for one parent so Jason had to go home every night, but returned every morning for us all to spend the day together.

We saw chaplains and social workers almost every day. The hospital was amazingly supportive. We felt well looked after, and Ashton was taken care of very well. There were 'Parent's Room's' on all the wards, in which no children or other people were allowed apart from mum's and dad's.

These rooms contained a shower, bathroom, t.v, dvd player, fridge, coffee and tea making facilites, big comfy couches. They were made to look like a unit, nothing like a hospital.

Ashton's CT scan under GA was booked for the Friday. He had to be NBM from 4am. We waited and waited all day. Ashton was not allowed to eat/drink so again, we took him for constant walks in his stroller. By 5pm that day, after he had been starved for 11 hours, we were told the CT had been cancelled. We were very annoyed but knew there was no point getting angry – it was no-one's fault but the list of patient's was too big and they did not have time for him. He was booked again for the following Monday, which was one day before his operation.

I will continue this story on another blog.

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