Scan results

Ciara's ultrasound and CT came up clear yesterday. Liver is working well but is still a big bruised lump. No visible signs of neuroblastoma either. Ciara was brilliant for both scans. The CT in particular must be very scary but she was very brave. Don't get be wrong, she didn't enjoy it but she stayed very still throughout.

There was a bit of a scare yesterday when we were asked a for a sample for a urinery catachelomines test . The nurses asked for the sample after the scans, so the initial thought was 'My God! What have they seen in the scans?'. It later transpired that the test was ordered before the scans and was all part of building a picture of Ciara's present state. Too late to avoid a major upset though but its not their fault. They need to do what they need to do without needing to calculate the effects on our imagination each procedure might have.

We will get those results today but we expect them to be normal.

CT scan today

The VOD is being stubborn. While we may have caught it early a couple of weeks ago it doesn't seem to be going anywhere. In fact her weight and abdomen size went up again yesterday and we probably don't have long to go with the difibrotide treatment. At about 10is she will be having a CT scan. We are trying this without sedation today but if that fails it will be under general anaesthetic tomorrow. The scan is to try and identify if there is a fungal infection and to make sure her little kidney is doing what it should be doing. She hardly weed at all last night so that can't help.

After a good weekend of Ciara being in a fantastic mood, she's been back down again for the last couple of days. We need to wake her up now to get her ready for the scan. Off to charge the cattle-prod...

Ooh! 200mls! The luxury...

I can't start to imagine how thirsty Ciara must be. The VOD has her whacked at the moment and she's sleeping a lot, but when she's awake, all she talks about is drinking. The other day I found her listing drinks and ticking them off with her fingers, whispering to herself: "orange juice, hot chocolate, milk, strawberry juice (!), water..." I think she wanted them all at once. Later while walking past the nurses desk, she noticed a cup and paused mid-step. "Excuse me," she asked, "but what's in that cup?". "Oh, erm, nothing", the nurse stammered diplomatically. The only time she comments about something on TV is when someone has a drink in their hand. I know that I for one have never been as thirsty as Ciara is now.

Her abdomen had been going slowly down over the last couple days and so on Monday she was allowed 200mls of fluids orally over a 24hr period, up from 100. Unfortunately this didn't last and her abdomen started creeping up again. So today she's back down to 100mls. A temperature spike had the doctor round last night, and Ciara complained of a sore throat, but this didn't seem to go anywhere and the throat could have been thirst related. Today she had an abdominal xray and ultrasound, primarily to determine the progress of the VOD but also to see if there where any signs of fungal or viral infections that could be causing the spikes. Nothing obvious apart from the large fluid build up and engorged liver. Her liver functions are remaining pretty normal at this point though. I don't know if this is a good or a bad thing. Perversly, good liver functions could be a bad thing as it may indicate something else causing the problem. This is my own speculation though and probably baseless. Dr Capra seems happy enough with her progress though, so we will go by that.

Later in the day, Ciara received a visit from Infectious Diseases, on the request of her consultant. Ciara was asleep at the time but all credit to the doctor, he got her sat up and was able to carry out a full examination without a major tantrum [from Ciara]. I was very impressed! He went off to chat with Dr Capra about how to proceed and I guess we'll find out tomorrow the outcome of those discussions.

We were talking with Ciara today about her cat, Coffee, who is on holiday with Auntie Annie. She said: "When my holiday is over, I can see her [Coffee] again." I told Ciara that she wasn't on holiday, that holidays are much more fun. "Yes, I don't like this holiday, it's horrible". Well said.

Sleeping it off

A quiet few days are ahead of us while Ciara's body fights the VOD. She's been sleeping a lot, and while awake, she's pleading for a drink. She can't have more than 100ml of water orally over a 24 hour period while we try and reduce the fluid build up. This is very tough, and now and then all we can hear from her is a quiet "water....water...." like some kind of Foreign Legionnaire. But she gets a "special treat" of half an ice cube every few hours! Wow!

She's not looking too well either. The skin complaint, while clearing up, has left her with scabs all over her bald head. She's gaunt too, with big dark patches under her eyes. Around her right eye looks like she's been in a fight, looking bruised and bloodied. She's very thin as you would expect and she's wobbly on her feet in the rare moments she wants to walk about. Not much cheer in her either. In fact, if you look up the word "grumpy", or "cantankerous", you may find a picture of Ciara.

The other day, before she came down with VOD, she was allowed out for a while. We took her to Phoenix Park to see the deer. It was a glorious autumn evening, bright and fresh...and Ciara wanted nothing to do with it. Admittedly it was creeping past "fresh" and in to the realms of "bloody cold", which may have had something to do with her desire to get back to her room. She allowed no pictures, but I broke the rules...

"I won't be in today. I'm waiting on either bad news or terrible news"

Today we would find out if Ciara had Veno Occlusive Disease or whether the Neuroblastoma had returned. The wait for Ciara's consultant to come round this morning seemed like a year. We were due to go and talk to someone this morning about Radiotherapy but that has been put on hold, pending a talk from the consultant. She arrived at 11am, and already her language was starting to change; with talk of "making Ciara comfortable", and still using radiotherapy to "slow things down". But before she could say for certain that it was Neuroblastoma, we needed the results of the urine tests. After the night we'd had, this seemed like just a technicality, and reminiscent of a time back in March when we waited for urine results to confirm that our world had been turned upside down.

At about 4.30pm, after a long day of pacing, the urine catecholamines results came in, this time delivered by Ciara's other consultant. Contrary to what Yvonne and myself had led ourselves to believe, they were lower, i.e. better. This doesn't rule out Neuroblastoma, but it does indicate that it's now unlikely to be the cause of the liver swelling. She's still not classic VOD though - she will be screened for other problems, such as fungal infections or hepatitis type diseases - but for now treatment will continue for VOD, with continuing defibrotide and increased diuretics to release some of the fluid build up. Next week she'll have a CT scan to try and work out what the pains in her legs are. We knew that there is still Neuroblastoma left, and she'll be having an MIBG soon to map where, but it seems that there is no rampant return of the cancer.

So, we make it through another day. This is not really a huge "phew" moment, but it's not the end of the world. The pains in her legs are still a concern, but no more than they were a few weeks ago. I have no doubt in my mind that if the catecholamine levels where up, we would have had the "getting our affairs in order" talk. While VOD is still very serious, and potentially fatal, the glimmer of hope has returned again. To quote oneself from May 28th: "Only this morning, in a very glum moment, we were talking about making the most of the time we have. Now we can hope for a future again. Thank God."

Don't want to talk so I'm just going to post.

Ciara's abdomen swelled slightly on Monday and she had some weight gain. I raised the alarm as we are worried about Veno Occlusive (liver) Disease. It fluctuated over the last 36 hours but by this morning it was looking pretty certain she had VOD.

However she's not presenting with typical symptoms. While it may still be VOD, there's a real chance the Neuroblastoma may be back. We will find out tomorrow.

I won't be sleeping much tonight and I doubt I'll be the only one. Sorry.

Flaking Away

Ciara's skin is getting worse unfortunately and she's been bleeding all over her bed clothes. It doesn't help that she keeps scratching at herself. The lab reports on her skin came up negative to any bugs so it's looking like an after effect of the chemo. Plenty of paraffin gel should sort her out plus this excellent silicon dressing the skin nurses gave to us. Very hi-tech stuff that's really adhesive yet comes away easily (!) and doesn't leave any residue.

Unfortunately her temperature has been spiking again. It went up to 38.2 this morning and has ruled out a trip to the park at least for today. Maybe tomorrow though. She'll need more cultures taken including a needle in the hand. Not fun.

Up and about

Ciara has been getting out of her room for a few hours over the last couple of days. There's a conservatory of sorts attached to the transplant unit that gives her a change of scenery. Unfortunately it's currently wrapped in builder's polythene so the scenery is a bit stunted. Nevertheless, she's up on her feet and plodding around now and then. She's still complaining of sore legs when she stands, possibly neuroblastoma hotspots that will need to be targeted with radiotherapy in the next phase of her treatment. This phase, however, is going very well. Her consultant insists that Ciara gets up and dressed everyday now and thinks that if all goes well, Ciara could be out as early as next week. To start with, we plan to take her to Phoenix Park at the weekend to give a much deserved breath of fresh air.

She's getting various skin complaints at the moment, from sore bum caused by diarrhea, to ithcyness caused by a yet unknown alergic reaction. The consultant dermatologist will be seeing her tomorrow but in the mean time she gets a good slopping of vitamin E cream. To add to her discomfort, she has thrush in her mouth and a UTI. To lighten her day though, the teacher has been visiting again now Ciara is up to it. I think a trip to the park will also lift her spirits no end.

(In other news, baby #2 still on plan for Dec 9th. Scan on Monday shows that he could be a bit of a lump. Mum doing well but sore and tired.)

While She Was Sleeping

Ciara has spent much of the last seven days either being sick or sleeping. From Friday to about Tuesday she can't have spent more than a few hours awake. Then, a couple of days ago, she started perking up. Her numbers are up, she stopped being neutropenic on Wednesday, and today, the strict isolation has finished! That's what a good few days of sleep does you.

I can't believe it really, her recovery is much quicker than I thought it would be. She's still being sick, but the diarrhoea isn't so bad and she's sitting up more and chatting (and being cheeky) like the good ol' Ciara we know and love. Tomorrow we'll be taking her out of the room if she's feeling up to it, but there's no rush.

Halloween came and went for Ciara without much fanfare. She couldn't have too many decorations up during the build up, and we couldn't see any fireworks from her window, but she does have a light up (and wipe-clean) ghost in the room. This is the second year in a row without us spending a decent Halloween with Ciara. This time last year Yvonne was in St James' having her dodgy tooth removed. A very long twelve months, I can tell you that. Talking of Yvonne and hospitals, she's trying to hold Baby #2 in for as long as poss, but it's getting close!! Moses basket and baby clothes are up at Ronald McDonald House, just in case.

Which hospital shall we visit next then? Well first up, The Coombe Hospital for Women, then, let's see, St Luke's, for Ciara's Radiotherapy. That will do I think.