Final catchup

It's 2am in the morning and my old insomnia has returned, helped in no small part by our ward roomy's incessant snoring! So I will take this opportunity to complete the catch up of our last three months.

On the morning of Wednesday 21st March 2007, Ciara had a blood transfusion. She was badly anaemic, enough so that she would normally have been given a transfusion as soon as she arrived but as she had notes saying she'd had anaemia before, they held off under doctors orders. Don't know why, I'd yet to learn to ask questions at every step of the way. You have to learn to be a parent of a sick child, normally through experience , as it doesn't seem to be part of the natural parenting instinct.

Once the transfusion was complete, she was ready for the CT scan. The times of events on this day of days are a bit blurry but I think it was about 2pm that she went up to new scanning department. The chloral hydrate they'd given her didn't knock her out completely, it just made her into a belligerent drunk, shouting and swaying and slurring. She got very agitated as we lay her under the huge doughnut of the CT scanner. The radiologist nearly called it off saying that she'd need a general as she wasn't staying still. I managed to persuade her to carry on and with some assistance from me they managed to get her head strapped up correctly. Ciara then fell asleep.

The scan took about thirty minutes and Yvonne and I waited outside. We went back in the room and I asked if there was anything obvious. They said there was nothing they could tell us until all of the images had been compiled. We then went back to St Michaels ward with the swaying drunk. We were on the ward for about ten minutes when a nurse came in saying the doctors wanted a ultrasound and an x-ray done while she was still asleep (or at least acting like a drunk old duffer in a pub). So we trundled back up to radiology again. Ciara had the ultrasound first and while this was going ahead, I asked the doctor if he could see anything, he diplomatically changed the subject. I'm no radiologist but I reckon I might have seen what he was looking at.

Once complete, Yvonne and I were asked to wait in the ultrasound waiting room. A few minutes later we heard a small commotion outside, a lot of people gathering around and what sounded like Dr Monaghan saying, "Ah, they're both together, good". Then he, his team, Ciara's nurse and the radiologist, all came in to the room, closed the door behind them, and sat down.

I'll now quote from an email I sent to my mum the following day:

A Neuroblastoma is a malignant tumour of the neural system which has the job of taking messages around the body. Ciara's has stage 4 Neuroblastoma, the last stage. Ciara has a tumour around a kidney and it has branched off to affect joints in her legs, arms and skull.

It's more than likely affected her bone marrow and other places too. This disease most often presents itself at stage 4, and stages 1 to 3 are rarely diagnosed. In this case it presented itself with classic symptoms of juvenile arthritis. I've heard people describe cancer as being sneaky. This would appear to be true. However even if diagnosed as neuroblastoma in December, the treatment and prognosis would have been the same.

Last night Ciara was moved to the Oncology ward, St Johns, and we were introduced to our oncology consultant this morning. Fin Breatnach (pron: Branock). He's very nice, and VERY honest. Following today's MRI, he and his colleague, Anne O'Meara, went through the diagnosis, prognosis and the treatment.

...

They are expecting Ciara to make a good recovery after this session of therapy and be back at school leading a normal
life. The therapy process is very intense and is normally successful. Unfortunately it's a one off process. There's about a 70% chance thatit could return and repeat of the treatment would not help.

What I didn't say in the email, but what I can clearly remember, is what it was like to receive news like that. It was like have tunnel vision, I literally couldn't see properly. There is no coherent thinking and you're in a kind of stupor. It's only the release given by crying that allows you to think again. It was Dr Monaghan who told us the news, and it must have been very tough for him. I since found out that his wife had died of breast cancer only three weeks earlier. He didn't say the 'C' word, and even after words such as 'malignant' and 'tumour', I was denying it to myself. Ciara can't possibly have cancer, it's some other condition which uses those words. He gave us some description of what it was and said that the Oncologist would be round later to give us more details. What the hell's an Oncologist! The 'C' word being avoided again. I met a kidney doctor today, he didn't call himself a "nephrologist", he called himself a kidney doctor. No one is scared of kidneys.

Back on the ward, and after Ciara had her chest x-ray, we sat in stunned stupor. Curtains were pulled around us and a strict 'do not disturb' policy was put in place. Tea was bought round but Yvonne doesn't like tea and I can't even swallow it if it has one sugar in, let alone three. After while we were bought in to the staff room where the Anne O'Meara, an Oncologist (I suppose 'Cancer Doctor' is a bit sinister), explained what was going on. The neuroblastoma was a tumour of the neural system that affect immature cells, commonly children between 1 and 5. The tumour had branched out from the primary tumour and had reached most of her body and was probably in the bone marrow also. "So it's all over her?", said Yvonne. She let out the most soul wrenching wail I've ever heard, and the tunnel vision and incoherent thinking came back to me too.

Dr O'Meara has sad, sympathetic eyes, and she didn't hold back in telling us how serious this was. I kept waiting her for to say 'it will all be all right', but she didn't. Yvonne tried to ask if she was going to die but couldn't get the question out and I remember saying to her not to say it. The rest of the conversation is lost to me but I do remember her asking if we had any questions. Yes! How do we make this all go away and for you not to have just said all that?

A while later we were moved to St John's ward. A place full of bald kids and bedpans. I realised I was going to have to lose my repulsion to sick people really quickly if I was going to help Ciara. Ciara was given a private room and the three of us were left to our thoughts.

Yvonne slept on the ward that night with Ciara, and I slept up in the dingy parents accommodation as I didn't want Yvonne in that sad little room upstairs that night. We both slept like babies. I suppose a defence mechanism kicks in during these times. Considering I normally lose sleep over the smallest things, I was amazed that I could ever get to sleep again.

The following morning we were introduced to our permanent consultant, Dr Fin Breatnach. Another quote from the email to mum...

Tomorrow Ciara will have a hickman tap (a catheter) inserted in her chest. She will have a biopsy, probably of a tumour in her leg so they won't need to open her up fully. They'll do 3 biopsies, two to be sent of to Newcastle for the tests and one to be kept on file for research. Next they'll take sample from her bone marrow to see if that has been affected too. They expect this to be the case so no point hoping for anything else there. I think they'll be doing the cell retrieval thing but I don't the process with that.

She will then go on a very intensive course of chemo which should stop the pain and reduce the tumour in a matter of weeks if not days. This will repeat every 10 days for about 70-80 days when she will then be operated on to remove the primary tumour. After the surgery she will have further sessions of chemo plus radiotherapy and vitamin therapy.

After spending Wednesday afternoon and quite a bit of Thursday crying, I woke up on Friday feeling wondering why I didn't want to cry immediately. I had to think of nasty scenarios before I even thought about crying and they were easily stopped then. Surely I should be in an uncontrollable sobbing fit 24hrs a day! This was not the case. If someone had asked me month ago what I thought I'd be like two days after hearing Ciara had cancer, I would have told them I would be a useless wreck. However I had gained a strength from somewhere that I didn't know I had. First off I thought I must be callous and uncaring, but that's stupid. I love Ciara more than anything ever. She's my daughter. I mentioned this to Yvonne later and she was the same way. She too had found a strength and most of the time the worst she had was a sick feeling in the stomach. We weren't kidding ourselves though, we both knew that the odds were stacked against Ciara and we would need all the luck in the world to get over this. But there was hope and we remained positive.

Ciara was due to have her Hickman catheter and three biopsies on Friday afternoon so I thought I'd spend an hour going out to get some groceries and pick up some clothes from Dunnes. I went out to the car to find it had a flat, so spent an hour changing that. I managed to knacker up the jack so that's the last car that jack will ever lift. Got down to the shops feeling increasingly annoyed and frustrated. Bought a daffodil badge as it was the Irish Cancer Society's "Daffodil Day". I'd never noted that day before now. The shops didn't help my annoyance and frustration, after wasting 20 minutes trying to get a trolly, I found out some idiot had decided to separate Dunne's dairy goods, homeware, grocery and fruit and veg departments in to four shops, each with their own queue! Lucky I didn't have a gun otherwise all those grey and depressing people in Crumlin Shopping Centre would be riddled with lead by now.

Once back at the ward I found I'd missed all the pre-op information given to parents. Yvonne and I argued a bit. Yvonne managed to annoy me by not getting herself any breakfast then complaining how hungry she was. Anyway, we managed to sort ourselves out, I apologised for picking a stupid morning to go shopping and she thanked me for the PJ's I bought her.

While I was away changing tyres and having murderous thoughts about the general populous, Yvonne was told the medication programme that Ciara will be going through. She will be part of a study group that encompasses the UK and Ireland to trial a medication protocol. The trial includes three randomisation processes to decide a path for treatment. After the trial, the success of the different paths can then be assessed. There will be 70 days of chemo, stem cell collection possibly preceded by a stem cell growth drug depending on the first random selection, then surgery, then a randomly selected path of further chemo (MATS), then radiotherapy and vitamin therapy. The final randomisation for the trial will decide whether Ciara will take further immunotherapy. Thankfully Yvonne listened well and told me all.

On Thursday evening the nurse had noticed that Ciara was very pale and had taken bloods. Her count was very low still so she was given her second transfusion Friday morning ready for the operations later. In the afternoon she had her Hickman fitted, a biopsy of the primary tumour and marrow biopsies. One for testing and one to be stored for research. The surgeon told us afterwards that it was difficult to tell the primary tumour from the kidney it had surrounded and I wondered if that kidney may have to go. How will she be with only one kidney? Will I have to donate? Would it make any difference? They nipped the kidney while doing the biopsy so had to put a couple stitches in it. We were told she may have problems weeing because of that. All she has done since the op is wee!


Ciara right after biopsies and hickman operation

Ciara started the chemo the same night. A momentous occasion I suppose. Wednesday she has a CT scan...Friday she's a cancer patient. The anti-sickness drugs seemed to be doing the trick but Saturday she had a sickness while needing a wee scenario. I managed to catch neither so she managed to wet her pants at the same time as spewing congealed milk everywhere. Good work Dad!

She was very groggy on Saturday and spent the day sleeping but she was been in fab form Sunday and was out and about, on her feet, and being a laugh again. She still doesn't want anyone to be near her so hugs and kisses were still out of the question, but then that's been the case for about four months now.

She had no appetite yet but was been drinking well. Over the last few days she was given a laxative as she hadn't pooed for a week. Sunday she had a suppository which rapidly kicked her into touch. 15-20mins my arse, no sooner had the nurse left than she was dropping little
ping-pong balls in the bed pan. She needs to stay on a lax for a bit though as one of the chemo drugs (vincristine) and the morphine had
blocked her up.

Dr Breneach told us Sunday that her uric acid was up as a result of the chemo working. Apparently humans don't have the enzyme Urate Oxidase to break it down and neither do Great Danes and Irish wolfhounds. All other mammals do! Isn't the human body a wonderful thing, it develops a cancer that only affects 2 to 5 year olds, and turns off the gene to produce Urate Oxidase that helps then get better after treatment.

Yvonne and I managed to get a place in Ronald MacDonald House Saturday. The place is like a decent hotel only you have to cook for
yourself! Very impressed. It has fab kitchens, loads of storage, lovely rooms with TV and ensuite, a TV room, a kids room, a library
and a nice patio garden.

Mum and Tracy came over that Monday, it was fab to see them and it made all the difference. Dad came later in the week and stayed till Friday. I hadn't seen him for a couple of years and I'd missed him dreadfully. Ciara was looking excellent but was in a real strop. Her eye had gone down already and she was up and about without any pain.

Ciara had an MIBG injection in the following Thursday. This is a radioactive isotope that will show up the location of the tumours under x-ray. It took us a while to get it sorted as we had a useless nurse. She was a stand-in for our regular and was a bit dozy. She took us to the wrong place twice then abandoned us for 20 minutes while she went off to work out how to be a nurse. Ciara was given a flashing dolphin key ring by the nuclear medicine nurse which slowly drove me crazy through the night.

He morphine levels were dropped that day. This was good as it was beginning to make her very itchy. She'd already drawn blood on her shin from scratching and you can see the rash two weeks later. She was given another transfusion to get her back on her toes and some liquid paraffin to give her a clear out.

She started getting much better at letting people look at her hickman and other procedures like blood pressure. I guess she's getting resigned
to the fact that it's going to happen regardless of the fuss she kicks up. It's always a mild fuss and think she is amazingly brave.

Drug reps from a company came round to teach us how to use the InjectEaze to administer the G-CSF (granulocyte-colony stimulating factor) a growth factor that stimulates the bone marrow to make more white blood cells.. They were very irritating and wouldn't listen to a thing Yvonne was saying. We were very glad when they left so we could bitch about them.

Yvonne and I were expecting to be in the hospital for a good few months, and then, to our shock and awe, on Friday, we were allowed home!

She'd managed to keep her temperature in check after getting a kidney infection in the week which was what was making her temp peak over the last few days so she has been on antibiotics which seems to have made a difference. Our big problem then was keeping food down. She had an appetite Saturday morning and evening but it didn't stay down very long.

We were been given literally a crate full of medical stuff to take home, this doesn't include the carrier bag full of medication from the
pharmacy. We managed to get her medical card sorted before we left the hospital so we aren't paying a penny for prescriptions. We walked
into the kitchen and realised how filthy it was! I spent the first hour scrubbing the fridge with stolen antibiotic surface wipes.
Ciara was neutropenic, meaning a low neutrophil count in her white blood cells. These deal with infection defence so we're a bit
paranoid. Yvonne administered her first injection Friday. Bit nervous but better the following day. Ciara's pain has completely gone, even without pain killers. We were told last week that the tumour is very chemo sensiitive, it's doing the job!

Ciara was back in for session number two Monday 2nd of April (no private room this time) and I went back to work for a bit on the Wednesday. Since then she had Easter at home but was a bit sick to enjoy the eggs. Last Thursday her hair started falling out, and now she is almost completely bald. She is still amazingly cute though. She's one of those kids who still look good with no hair. The sickness subsided after the Easter weekend and she had a good few days at home with her mum. Thursday, we all went back to Crumlin for chemo session number three, which she has just finished. There was a bit of a worry about her kidney not working properly, her wee was brown and something called 'casts' were in it, which is a sign of kidney damage and was probably a result of the biopsy. However a scan showed that all is OK and for now the kidney is doing everything it should be doing. Amazing considering a bloody great tumour is wrapped around it. She's so stubborn, not even tumours will stop her kidneys working.

Wow! That's it, catch up complete. It's still the dead of night. Our roomy is still snoring our heart out. Ciara just used the bed pan for the twelfth time this evening and we're going home tomorrow!


Ciara this morning...Wow!

My God...who the hell is ever going to read this far?