home and healing

The surgery was a huge success and Carys has amazed everyone by getting back on her feet just 3 days after the operation!
Immediately after the tumour was removed, the anesthetist called me on my mobile to give us an update. She said the surgery was on track, the tumour had been removed and that Michael (surgeon) would be another hour and a half to close up before coming out to talk to us. We were all relieved and happy to hear that, but still a bit anxious to find out how she was, and the details about the surgery. When Michael came out to see us, he looked tired and quite serious. There were a few things that he was concerned about and these were:
- The tumour was deeper into the psoas muscle that originally thought. The psoas muscle is deep at the back of the abdomen. He had to dig deep into this muscle to remove the tumour cells. The concern was that there might have been some damage to the left femoral nerve which runs through this muscle. If this nerve was damaged, the result could range from numbness on the left thigh to inability to lift the left leg. We wouldn’t know if there was any serious damage until she woke up and started moving.
- There was considerable bleeding to the extent that he had to tie off the left iliac vein. This vein is part of the circulatory system to the left leg and kidneys. Although tying off the vein is permanent, surrounding blood vessels are able to compensate for this and take up the slack. However, he was concerned about circulation to the left leg, and would monitor it closely for the next couple of days.
- The tumour around the aorta had a clear plane between the two, so he decided to use a scalpel to scrape the tumour cells off, but because it was so delicate, there were some holes in the aorta which required stitches. Although bleeding from the aorta had stopped, this also had to be monitored closely.
- Because of all the bleeding, Carys had to have over half of her blood volume replaced. With such a considerable transfusion, all of her functions had to be monitored closely overnight.
On the positive side, Michael felt he had been able to remove more than 90% of the tumour mass. To be able to get almost all of the tumour out means a much better outlook for Carys, so we were very happy about that. Now we just had to wait for her to wake up, and get through the night without any complications.
When we were paged into the recovery room, I went in first, whilst Ian stayed with Tane in the waiting room. She looked so small in the cot with so many tubes coming out of her. I didn’t count them all, but there were multiple lines coming out of the hickman, both arms and a catheter. She also had a nasal-gastric tube put in during the operation due to all the pushing on the stomach. Though as soon as she woke up, she pulled it out. When I saw her she was only semi-awake and still pretty out of it. But when she saw me and said “mama” I was just overwhelmed with relief, gratitude and joy. I really wanted to hold her and snuggle into that warm soft spot on her neck, but all I was able to do was stroke her head and kiss her feet. Ian and Tane came in to be with her for a while. Although she was pretty drowsy, she kept looking at us, and I’m sure she was really happy to see us. As she woke up some more, she moved all her limbs and her left leg was pink and warm, so we were able to let go of many of the concerns that we had. The next few hours were still pretty critical, so they transferred us to ICU for the night. Unfortunately, because of all the equipment in ICU, there was no space for an extra bed for a parent. I hated to leave her there, but after much reassuring from the nurses, I headed home. Tane must have heard my voice when I came home, because he came out of his room and asked “Where’s Carys?” When I gave him a hug he said “no I don’t want you, I want Carys.” My poor little man has had to grow up so much emotionally. We have kept him involved in Carys’s treatments and hospital visits, whilst giving him lots of reassurance. It’s hard to know what’s going on in a four year olds’ mind, but he has handled everything beautifully, and I’m so proud of him. That first night, he wanted to sleep in Carys’s cot, luckily he just fit! I could totally understand him wanting to do that, to feel close to Carys. If I could fit, I would have climbed in next to him!
When I went back to the hospital the next day, Carys had had a good night, sleeping mostly. She was still pretty sedated, on morphine and ketamine. Later that day, we were moved up to the ward, and the ketamine was turned off. Some of the tubes in her arm and the catheter were also taken out. Over the next couple of days, Carys kept improving rapidly. By Friday, she was eating, drinking and pooing normally, and she came off all the IV drips. As soon as she was free, she said “down” so Ian carefully lifted her down from the cot. I was too scared to do that because her scar is from one side of her tummy to the other, in a rainbow shape over the belly button, and I was afraid to hurt her. But she was happy to be free of the cot and after a few drunken looking steps, she was off out of the room and saying “hi” to the other patients on the ward!
We saw both Lisa and Michael today for Carys’s post-op review. They were both extremely happy with Carys’s recovery. Because more than 90% of the tumour was removed, it is unlikely that she will need further chemo. In neuroblastomas, remaining tumour cells usually regress and die off on their own. But Carys will still need regular scans and urine tests every 3 months for the next 12-18 months. Then if all looks well, the testing will be less frequent.
We are all so incredibly happy and grateful that Carys has come through all this so well. Such a huge stress has been lifted, that I feel like smiling all the time. Luckily Australians are a friendly lot, and smile back. If we were still in HK, people might think I was a bit of a loony!