We travelled to London for three days for the planning sessions for the next step in Romy’s treatment, Radiotherapy. Radiotherapy is carried out at UCL Hospital in central London, but travelling by public transport was not advised so we had to drive. Driving past Madame Tussauds, Baker Street and various other touristy hotspots was surreal- never in a million years would we ever chose to drive in central London under normal circumstances. Navigating, figuring out the congestion zone charging system and paying the fees correctly in advance to avoid heavy fines, finding parking that didn’t cost a small fortune and just the busyness of it all was quite overwhelming, especially coming from a small island with small roads. The three day stay however was a good practice run for the future trips for the treatment itself. The play team at UCLH radiotherapy department is so well organised and the play specialist Rhonda met us at our first meeting with the Radiotherapy Consultant with a trolley full of toys that immediately sparked Romy’s interest. She was allowed to choose a couple to take to the playroom after the initial appointment, where she added them along with more toys to her own named box. This stayed on the shelf in the playroom and would remain her allocated toys that she was allowed to play with during her block of treatment. The two days in London allowed her to see the machines that would be ‘taking her pictures’ (or delivering the radiotherapy) and make a ‘vac bag’ to help her stay in exactly the same position each day of her treatment. After watching a video to demonstrate the process we visited the mould making room where Romy was expected to lie on a big blue bean bag while a vacuum was attached to it, sucking the air out and converting the bean bag from a soft mouldable bag to a hard pad around her. The vac bag would then be labelled with her name and some markings to show where certain parts of her body were to be positioned to enable the radiographers to get her into exactly the same position each day. Romy was reluctant even to make the vac bag- we all wondered if she would manage to find the courage to stay still for the treatment itself each day, but we were determined to help her achieve it without having to have daily general anaesthetics. The difficulty on this first day was that it was all so new to her and she was already shattered after a long morning of travelling and meeting new people in a new hospital. Her Ng tube was also not aspirating correctly meaning we could not put her feed on or give her medicines and we could see blood when we tried aspirating it, so I took the decision to abort trying to make the vac bag and the day culminated in a visit to the Tower 11 North Ward to get the ng tube sorted. By the time we got seen on the ward the tube was working again so we left to get back to our nearby accommodation to catch up on the medicine and feed for Romy and for the rest of us to have tea. Outside the hospital on a busy London pavement Romy’s body decided it was the perfect time to throw up, on one of the rare occasions we were without a sick bowl. Let’s just say it was a difficult tiring day for all of us, but the next morning was a fresh day for us and without needing to travel into London we were all feeling fresher. Having initially seen the vac bag making process and machines, on day two when we returned to try again, Romy was a little more familiar with the process and most importantly not hungry, and therefore cooperated to get her vac bag made. The final day in London was the one we had been dreading. It involved having a cannula inserted up on the ward on the eleventh floor of the hospital, before returning back to the basement to have a CT scan. Romy has had plenty of CT scans before, but this one required contrast to be injected into her veins remotely at the moment of the scan being performed, and unfortunately the remote kit was not compatible with her wigglies. She hasn’t needed a cannula for such a long time, but she remembered all to well how much she hates them. However we were careful to insist on numbing cream this time. The fish tank in the play room area worked like magic to calm Romy down after the trauma of the cannulation, and the next step was having three small lines drawn on her torso to align with the beams of light from the scanner, and some small lengths of wire stuck to them to show up on the scan. Then she had her cannula unbandaged and hooked up to the equipment that would remotely inject the contrast while lying on the CT scanning bed. This went better than I thought it would, now she just needed to lie still while we all left the room and the machine did its work. This was the first scan which Romy has had where nobody else was allowed to remain in the room, if I could have stayed in the room it would have been a piece of cake, but being left alone in the room with the machines was far from it. With the radiographers behind a glass screen in the control room and me in the adjoining corridor talking to her via a walkie talkie they provided, we were able to get the scan done, although Romy made it clear she was not happy. The last step of the scan was for the Radiographers to permanently mark the dots they had drawn on her with tattoos. They may only be small dots but to see a five year old permanently tattooed was yet another hearbreaking thing for me to witness. I’ve lost count of the scars she has, not just her big scar from surgery, but countless marks from cannulas, vas cath insertion spots in the veins in her neck, small scars from her biopsy and bone marrow aspirates, this was yet another way her perfect little body was marred. But the hardest bit of seeing her be tattooed was not being able to talk her through it before hand. The tattoos had to be in exactly the right spot so they had to quickly be done before she even got off the scanner bed and talking about it before hand would have made achieving it quickly and accurately impossible, so I had to talk her through it afterwards. The wonderful play team provided a box of toys for her to choose a prize from for getting the scan done and she could have her cannula removed. Just while we were in London for these planning sessions Romy started to get her appetite back a little and started nibbling at things, 67 days after her stem cell transplant. We now had a couple of weeks break while the Radiotherapy Team used the scan to plan her treatment to direct the radiation to the correct spot.
Helen & Tom
