waiting for more results

We saw Lisa our oncologist, and Michael our surgeon last Tuesday. We had a bit more time to discuss and digest the latest test results, though we are still in a bit of shock. Both doctors were ‘surprised’ with the results, as they were not expecting the remaining tumour to be as big as it is. From the pictures, the remaining tumour is like a little sausage running alongside her spine, behind the psoas muscle. It is 6cm long and about 1.5 to 2cm around. It’s hard to imagine Michael not seeing this piece during the surgery, so it is most likely to be new growth. The doctors are waiting to see how this tumour behaves before deciding on a course of action. If it progresses, then we go back to square one, with chemo, surgery and possibly radiation. Basically, everything becomes an option again. We are all hoping and praying that the tumour regresses on its own. Carys deserves nothing less than to be cancer free. So we’ll wait for the next MRI scheduled for Sept 6th. When we get the results from that, we’ll be able to compare with the last set of images and see how the tumour is behaving.
Carys, had her central line and kidney stent out, so she’s now more free. It’s easier for us too, not to have to pin up the tubes every day and go in to the hospital for line care every week. Though we might miss the nurses just a little bit. They are all so nice! Carys’s hair is now growing back. It’s a lot thicker than before and so soft. Everyone loves to give her head a little rub!

Tube free

Carys will have her Hickman (central line) out tomorrow as well as the kidney stent. It is apparently a pretty easy, straightforward procedure done under GA, and we should be allowed home on the same day. Whilst we are really happy to have the line and stent out, our patience with the hospital is wearing thin! We only found out on Monday that the procedure will be done on Wednesday! After asking about this for weeks, we only get 2 days notice. ah well, what can you do?? It might take us a little while for us to adjust to a tube-free Carys. And I wonder what she's going to think?? She's pretty well-adjusted to it, sometimes playing with it and saying "hee-man." We will have a chance to speak with Michael the surgeon tomorrow. I am keen to ask him about the remaining piece of tumour. Whether it's new growth and if further surgery is needed. Michael didn't mention this piece before, so I'm a bit curious as to why that is. I spoke briefly with Lisa today and she wants to keep a very close eye on the remaining tumour, so she's brought forward Carys's next MRI by 1 month. With kids like Carys who are in the "intermediate risk" group, it is impossible to predict how the tumour will behave. We have an appointment to see Lisa next Tuesday, so we'll be able to discuss next steps in more depth then.

living with cancer

Things have been going so well, I guess our run of good luck had to come to an end. We got the results back for Carys’s MRI and MIBG scans. The images showed a small piece of tumour remaining behind the psoas muscle. That’s a big muscle at the back of the abdomen that controls the hip. The news came as quite a shock and we are devastated. After the surgeons’ confidence that he had got almost all of the tumour, we were hoping for perhaps small, microscopic bits left behind. But this piece is quite visible on the MRI as a small chain of little lumps, and showed up as ‘hotspots’ on the MIBG. When I asked Lisa what this meant, she said it indicated that the remaining tumour cells are alive and viable, though she hopes that this small piece will remain stable. She hopes that the tumour has had its big growth spurt since it was so large at diagnosis, and won’t continue to grow now that it has been de-bulked. But she couldn’t rule out further growth. The current protocol is to monitor the tumour every 3 months with an MRI, and MIBG if needed. On the positive side, the doctors still think that they removed more than 90% of the tumour, which was the original aim. So I guess the surgery can still be called a success. But for us, it wasn’t the outcome we had hoped for. We wanted for all of this to be over, but now we have to figure out a way to live with the quiet, constant fear. We get through day by day and just cherish and savour our time with both Tane and Carys. But thoughts of the future paralyse me. Where should we live? Should I go back to work? Should I continue my studies? and the most perplexing question of all - how do we tell Carys that she has cancer??? Most of the time, I tell myself to just get on with it, but at other times, it all seems so hard. And I hate that feeling of being so out of control and powerless. The cancer is like an insidious little beast that has a mind of its own. When I look at Carys, I can’t believe that it’s still alive inside her. She’s such a brave little girl. She takes everything in her stride even though she has had to endure more in her 19 months than anyone should have to endure in a lifetime. She continues to do really well. She’s perked up a lot since the chemo stopped and she recovered from the surgery. Although she never really seemed 'sick' per se throughout the treatment, she was quite quiet and passive. Now she’s much more active and chatty and learning new things all the time. When she reaches out her arms for Ian or me and says “duddle” instead of “cuddle,” and wraps her arms around our neck, it’s just magic.