After achieving the CT scan so reluctantly, we all knew keeping still and letting me leave the room for the treatment itself would be difficult for Romy, so together with the play specialist we made a plan for an additional visit to UCLH for an extra session to prepare her for the treatment. With the cannulation done and dusted we wanted to show Romy the treatment itself would be straightforward, quick, easy and most importantly completely painless. We drove into London and back to Southampton all in one day, spending a few hours in the basement of UCLH while Zephyr and Daddy passed some time in London waiting for us. Romy saw the machine where she would have her treatment each day. This gave her a chance to see the machine before starting her treatment, separate to the bad memories of the cannulation. It was also closer to the start date of her treatment to ensure it was fresh in her memory. At this session she was given a Lego model of a LINAC (radiotherapy machine) to build and play with at home. We also bought some walkie talkies to role play having the treatment at home over the coming week. (The radiotherapy department use special walkie talkies that work through the lead walls. These enable the parent to talk to the child the whole time while they are on their own receiving the treatment. We bought a cheaper version to practice through role play). If she could not do the treatment awake, she would require a general anaesthetic every day. This would meant nil by mouth for 6 hours every day before being put to sleep, plus recovery time. When you can only tolerate about 150ml in your stomach at a time but need to get a certain amount of calories in each day, more than 6 hours out of your day is a big chunk of time to be fasting. On top of this, an anaesthetic would definitely not allow time to go out each day and explore a few playgrounds or nearby sights. Romy would end up spending a lot of her time feeling tired, grumpy and hungry, and would miss out on time that she could spend with Zephyr and sleeping with us all together at the nearby accommodation instead of on the T11 North ward! Not to mention the small risk factor that comes with every anaesthetic. So we really wanted to help Romy achieve Radiotherapy without having to have a General Anaesthetic every day.
Helen & Tom
