Putting it off

I've been putting off writing this post for a few days as I don't want to write down what's going on. I will force myself though for the records if nothing else. Ciara finally started back on chemo last Thursday after much umming and ahhing. Her platelets weren't coming up as they would have liked so she had a transfusion in Portlaoise on Wednesday ready for chemo in Crumlin on Thursday. This was the last chemo session before going over to the TVD regimen I mentioned earlier.

I joined Yvonne and Ciara after work on Thursday night at the hospital and the two of them were busy playing Snakes and Ladders in the parents room. I noticed what looked like a tiny but dark bruise on Ciara's elbow and asked her what it was. She said it was marker and covered her arm up. I had a closer look and could feel a lump under the skin. There was another one of these on her other arm but without the bruise. We mentioned it to the nurses who said they'd get a doctor to look at it. It wasn't until the following morning, while I was at work, that Yvonne called me to say that Dr Capra (another oncologist) was worried about them. Again this year, I had the sickening lurch in the stomach. I drove back to the hospital to be with Yvonne while we found out what was going on.

Dr Capra had asked a dermatologist to look at it and it was the chief dermatology consultant who came down. He said it could be a bruise, or a haematoma, as she had low platelets, but this was unlikely and he wanted to get a biopsy done straight away. Ciara was given an interesting mix of morphine and chloral hydrate and quickly became the swaying and singing drunk we discovered a couple of months ago. A 'core' sample was taken from her left arm and sent to the lab.

Back in the ward Dr Capra came to talk to us again. At this point Ciara was at the 10 pints of lager, "I realllly love you i doooo" stage of sedation and was polishing off a plate of sausage-roll and chips, some of it even going in her mouth.

This weekend we are preparing for bad news from the biopsy results, due Monday. While there is a chance that it's not neuroblastoma, it's very unlikely and false-hope would not be good for anyone. I asked Dr Capra if that means the treatment has not been working as well as we'd liked, and he nodded. This is a hammer-blow, Ciara needs all the luck she can get and this isn't it. Yvonne and I had led ourselves to believe that the treatment would be successful at least in the short term and that the big problem would be a recurrence later on. We had not prepared for the fact that the treatment itself might not be working.

What is strange is that the results of the recent bone-marrow aspiration came back negative, they were clear of neuroblastoma. How can it be clear somewhere and popping up elsewhere? Alas, this is possible with this type of cancer. I asked if the three week break between her chemo sessions could have attributed to this further spread and Dr Capra said this was very unlikely. In the US, treatment is separated by three weeks anyway and this kind of thing does not occur there. It seems that this is something that was going to happen anyway and the treatment break would not have made any difference.

Ciara will be starting the new TVD regime in about three weeks, and if the lumps turn out to be neuroblastoma then a further treatment strategy will need to be put in place. Details of further treatment were not covered on Friday as there was no confirmation that is was neuroblastoma, but let's be realistic.

In other news, Yvonne and I thought that all the stress wasn't enough so to add to it, Yvonne is pregnant. This was BEFORE diagnosis I have to point out, we're not that stupid! Oh, and two key people have left the company and I've been lumbered with the work of one of them, and some of the work of the other. In about 18 years time, once Ciara and the new baby have gone to college, I am planning on having a nervous breakdown, and I can't wait.