All set for surgery

Carys had her CT scan last Thursday, which turned out to be quite an ordeal. We fasted from 7am and were at the hospital promptly at 12 noon, as per the instructions we were given. We ended up waiting not 1 or 2 hours, but almost 5 hours until she was put under the GA for the scan at 4.45pm! So by the time she came out, it had been 10 hours since she had eaten anything. To have a 15 month old baby fast for 10 hours is just cruel. I was fuming at the time, and made a complaint to the hospital which they politely called “feedback.” Carys did extremely well though, happy to play and look at books all day. It was only after she came out of the GA that she started screaming. She was just so hungry and disoriented that she didn’t know what to do except scream.
We met with Michael Nightingale, Carys’s surgeon on Tuesday, who is a lovely, patient and gentle man. He explained the current protocols for treating neuroblastoma with surgery and the different schools of thought that exist around the world. There are some doctors who prefer to leave these tumours alone, some who believe resecting as much as possible is best, even if it means scraping blood vessels with a scalpel! Michael’s opinion, based on the latest research is to resect as much as possible, but without taking high-risk measures such as scraping blood vessels. A successful outcome would be to take out at least 90% of the tumour mass. Apparently, in most cases, remaining cancer cells are stable or even regress on their own or with further chemo. Radiotherapy is rare, as it can be more damaging than beneficial in children under 6. Then he discussed her CT scan results and showed us the films. Chris (who is Carys’s uncle and a surgeon) was with us, and got much more out of the pictures than we did! Even though Michael pointed out the different parts, it was all just shades of grey really. The scan showed that the tumour has responded very well to the chemo and is now one third of the size it was before treatment. However, it is still wrapped around the aorta and iliac vessels on the left, which are the main blood vessels in the centre of the body and that supply blood to organs and her left leg. Operating around these vessels will be the most difficult part of the surgery. With the treatment plan that Carys is on, there was also the option of another 4 cycles of chemo. But both Michael and Yves, another pediatric surgeon who heads up the Monash Children’s surgical team, believe that further chemo is not going to make the surgery any easier.
In difficult cases, Michael and Yves operate together as a team, so that’s what will happen in Carys’s operation next Tuesday. We all feel much more confident that there will be 2 experienced surgeons operating on Carys. You can’t ask for more than the head pediatric surgeons from both the Royal Children’s Hospital and the Monash Children’s Medical Centre. I also suspect that both surgeons are looking forward to the operation, as Cary’s case is interesting and rare for them.
So everybody is set to go next Tuesday morning. All except me. I am feeling so nervous about it all. I know that she needs this, and that she is in the best hands, but I feel just sick with concern about what she has to go through. When I think about the pain I was in after having a c-section, I can’t bear for Carys to have to feel that too. At least I knew why my tummy hurt, but Carys is going to wake up and not know why she’s in pain. There will be pain management for her, and she will be connected to various drips and tubes that will make things as comfortable as possible for her, but there will be times when she will feel it. Then there are all the risks associated with major surgery. Even though everyone tells me that little ones are tough and resilient and have great healing powers, it’s still a lot for a little body to go through. We will be in hospital for at least 6 days, which will not be fun. Again, I’m glad we are here and have the support of parents, family and friends.