Been a long time...

Well it's now been a few weeks since I last posted, probably the longest break since I started this but I needed a rest. No excuses now so it's time to update y'all on what's been going on since the start of the year. Since Christmas, Ciara's health started going downhill and she's only just started climbing out of the slump. She had an increase in vomiting which ended up with her not being able to keep a thing down, including oral medication. Basically her gut stopped working, she had a nasty session of pooing blood and then stopped going altogether. There's a few things that could have been behind this, gastritis and morphine being two causes, neuroblastoma another.


The days and weeks following Christmas were a bit scary, the threat of neuroblastoma was hanging around and it went to the top of list of possible reasons causing liver and gut problems. Ciara's temperature was spiking and urinary catecholamines test showed that while most of her levels were normal, there was a slightly higher than normal level on one of the counts. This was beginning to show a picture of returning neuroblastoma. On quizzing the consultant regarding the spikes, he did think that neuroblastoma was a probable cause.

After about week 1 or 2 of 2008, I was getting confused as to what we were treating; there seemed so much going on. What were we fixing today? Was it VOD? Gastritis? Malnutrition? Oh, and what was that other thing? That was it - the cancer. Priorities kept changing from day to day. With the liver condition (VOD) not resolving, a plan had to be made to include more aggressive treatment. A multi-discipline team came up with some kind of plan for going forward and it was looking likely that Ciara was going to need liver surgery to get on top of the disease. However, before we put her through this, we had the cruel task of finding out whether it was going to be worth it, or whether we were going to be sent home with a morphine driver.

So last week we started the full work-up of finding out Ciara's cancer position. First off there was another urine test, which would take a couple of days to come through. Then an ultrasound, followed by a CT scan, then bone marrow aspirates and a biopsy. Tests end this week with an MIBG (injection of radioactive isotope to show cancer cells under a scan). But before this, we needed to build her weight and strength up.

Her recent sickness resulted in Ciara's weight plummeting, with her body digesting itself just to survive. Her nasal gastric tube had to be removed a couple of weeks ago as all the vomiting had blocked it up. As she was pooling food only to throw it up again a few hours later it wasn't doing any good anyway. A strange thing happened as soon as it was taken out: she started talking about food. A new one was put back in the following day but as an experiment we removed that one too to see how she would get on feeding herself. She did very well, and managed cornflakes, cookies, the odd pancake, even some sausage and chips. She was also started something called TPN which is intravenous feeding.

Ciara had her bone marrow aspirates and biopsy under general anaesthetic last Wednesday. Just after she went under GA, she vomited. That night she was under very close watch and was pumped with antibiotics. She was extremely groggy and seemed very poorly, much more than is normal for a small GA like this. The risk of a lung infection from the vomiting was very high. Her heart rate went very high, she was peeking at over 40 degrees and her oxygen saturation was very low. We had an oxygen supply close to her pillow to help this out. I think the night would have been more scary if the doctors had told us how concerned they were. They did this the following day once she was out of the woods.

Thursday afternoons are when the oncologist have their Tumour Board to discuss patients progress and plan treatments. We knew that we would have to wait until after the meeting before we would find out anything from the results and we were expecting the worse. As ever, we leave it to others to say "Oh she'll be all right!". I think parents are excused from thinking this - it's called self-preservation. Nevertheless, the time came when Ciara's consultant came in...and gave us a list of good news.

First off, the ultrasound showed that the vein going through her liver, the one that flows the wrong way with VOD, had started flowing the correct way - a sign that the VOD is on the way out. What the ultrasound also showed, or didn't show, was any sign of neuroblastoma. Next came the CT scan. This showed that her gut was full of air, which would be causing huge pain and needed to be cleared before we got anywhere with the digestion. What the CT scan also showed, or didn't show, was any sign of neuroblastoma. Next where the urinary catecholomine results. They had gone down and were as near as dammit normal, that's normal as in you and me normal, not cancer patient normal. Finally, the biopsy showed one percent of what looked like old, benign cancer cells. Nothing active, nothing on the rise. So all good news there then So the only thing we are waiting on now is the MIBG, and the scan for that is tomorrow.

Ciara's girth has slowly been coming down, and while not constant, any economist would notice a downward trend. Over the last couple of days she's been perking up, and this evening I could swear she was putting weight on round the cheeks. Enema's and other interesting stuff seem to have kicked her gut back in to gear. The vomiting has stopped and it's been days since she was last sick for no reason. Her interest in food did wane so we had to put the NG tube back in last night. This caused her to be sick, but it certainly wasn't three days of milk worth (she's allowed to drink lots of milk), so something is working.

It seems the only question mark now is why she is spiking. That hasn't gone away and she's hitting 38.2+ nightly. Nothing has shown up yet and we are scratching our heads...

(Sorry Finn, footnoted again). Finn is doing great, he has a supreme interest in food. I'll cook him a steak tomorrow to see if that will satisfy him. He is the spitting image of Ciara when she was his age.