This blog post first appeared on dad.ie on September 25th 2009.
It occured to me yesterday that it’s been two years since my daughter Ciara, then four years old, went into surgery to have a cancerous tumour removed, along with a defunct kidney – yet it seems like only yesterday. The outcome of Neuroblastoma is different for many kids and unfortunately too many of the children who went through the same treatment in 2007 are no longer with us.

Neuroblastoma affects only a very small amount of children, and many of the treatments have after effects that occur only in a small amount of children. Ciara was always one of those small amount of children. A small amount of children would go hyperactive on a particular sedative, or get liver disease after a bone marrow transplant, lose hearing from the chemotherapy, not regain hair – the list goes on. All of those things happened to Ciara.

It would appear that the liver disease affected her ability to grow hair, and while it hasn’t completely stopped growing, two years after her last chemo you would still describe her as a bald kid. It’s never bothered her before but I think it’s beginning to. Little girls want to look like their friends and she said the other day how she doesn’t like it and wanted it long like before. We’re off to the dermatologist on Friday for a review but I don’t really know what the options are. Luckilly, she’s a beautiful child and doesn’t need hair to be gorgeous. It does seem to be thickening up a bit so fingers crossed.

Last year Ciara struggled a bit in class, which would surprise many as she is such a smart cookie. It would appear that her hearing loss – caused by chemotherapy – was causing her more difficulties than we’d previously thought. Just before she went back to school she had hearing aids fitted and she’s getting on very well with them – she has a bit to catch up with spelling but other than that it’s all good.

These little things are irrelevant compared to the big picture. My wee girl is still with us, happy and healthy, and while she is a normal six year old, and thus acts accordingly, not a day goes past that I don’t think that we had the best after effect possible with her still being around.

 

Ciara had her 3 month check up in Crumlin last week, and we got the final results of her urine tests today. All clear so far! She doesn't need to see oncologist for another 6 months but she will be in between that to get her little abdominal hernia fixed. That will be a little day visit. Hospital are going to speak to someone about Ciara's hair, it should have grown back by now but hasn't really done anything. That's it. (and this goes towards my post-a-day)

16.00 Ciara's homework  over.  CNN coverage is excellent.  Ciara wants to  go upstairs and watch a movie with some sweets. 14.40 Also trying CNN on ustream iPhone app.  Pretty cool!  http://www.ustream.tv/channel/CNN-Inauguration-2009 14.19 Using the the CNN/Facebook feed.  What a sign of the times!  Amazing technology. 12.42 I've taken the afternoon off to watch Barak Obama's inauguration with wife and kids. What an exciting and emotional day for so many people, at a time when the World needs a boost.  I received some crap (non-Ciara related) news today so glad I'm at home with Yvonne, Ciara and Finn. BBC, CNN, and most importantly Twitter, will be my guides to the day, if Twitter survives the onslaught. Follow the inauguration yourself on Twitter at http://search.twitter.com/search?q=inaug09. Off to get Ciara from school now, sliding all the way no doubt.

Last night Ciara had bad earache so this morning, to determine if she was ok to go to school, I asked her if it was still sore. She pointed to her shin and said it was this sore, which I took to mean "the length of her shin" sore. She later told her mum that her legs were sore like they were a long time ago (when she was ill). Yvonne rang me all worried, not surprising, and while on the phone we asked Ciara to do some jumps, run up and down the stairs etc - which she did fine. After telling her that Santa was watching, she told her that her legs weren't really sore and that she didn't want to go to school. ciiiiaaaRRAAAAA!!!!

From the weekend on, Ciara hasn't been feeling herself and had been complaining of a sore throat. Her Aunty Tracy had flown over on Tuesday to see us and of course Ciara's temperature started to rise! It always does if people come to see her, Sod's Law. As I might have mentioned before, temperature rises have to carefully monitored as she has such poor immunity. It is a time of great anxiety as if it reaches 38 degrees, she needs to go into hospital for a 5 day course of intravenous antibiotics.

By Monday it started to go over 37 degrees. Once Tracy got here is started edging up further. Yvonne called Crumlin for advice and they said keep an eye on her but go in to Portlaoise if it hits 38. Sure enough, on Wednesday afternoon, it hit 38. Pretty irritating as we try so hard to keep her out of hospital in the time between Chemo sessions. She was only outlast Thursday but then had to go in to Portlaoise for a full blood count on Friday and ended up wasting Saturday having another transfusion.

She stayed in Portlaoise with Yvonne on Wednesday night where initial assessment showed that she may have tonsillitis. Ciara was due to have bone marrow aspirations today (yesterday now!) where they draw liquid from the marrow to check for cancer cells. They wanted to get her up for assessment on Thursday night so we had a late drive from Portlaoise to Crumlin following yet another platelet and blood transfusion. She checked out OK and was able to go through with the procedure. Quite a relief as I thought she might not be fit enough. The procedure involves a general anaesthetic and a couple of big needles in her back. The GA meant she was fasting from Thursday evening and was VERY cross that she couldn't have breakfast!

Results of the bone marrow aspirates should be due on Monday or Tuesday. Her temperature hasn't peaked since Wednesday, her throat is better and all going well we could be going home tomorrow...er...today. She had another blood transfusion today. I'm sure Irelands blood supplies are being badly diminished by one small person. I would donate myself but they won't accept my blood in Ireland as I've lived in the UK within 10 years. Stupid mad cows.

The next couple of weeks are going to extremely busy. Ciara is fast approaching surgery and we've been given a date of 9th July. On Tuesday Ciara will be having a full body MRI and will need to be in the day before in case of an early Tuesday slot.

Sometime between now and surgery and depending on the results of today's aspirates, Ciara should be having peripheral bloody stem cell harvesting. This is a three hour procedure where she's attached to something like a washing machine and stem cells are removed for storage. These are put on ice until after she has high-dose Chemo which destroys bone marrow and stem cells. She'll then be given her own good cells back.

Also coming up will be another MIBG, this is the procedure involving injecting Ciara with a radioactive dye so any malignant cells show up on a CT scan. Not sure when this is happening but as Yvonne is pregnant, she'll have to be away for 24 hours.

Ciara was due to have a final chemo session before surgery next Thursday but as the harvesting is happening next week and surgery is following that, this has been cancelled. From what I understand the reason harvesting is happening next week is because of staffing issues otherwise it may have been later. This had us worried as we where thinking that she's missing a chemo session because of staff problems! However she's having the MRI and MIBG next week, and on Thursday she'll be discussed at the tumour board. They won't give her surgery unless she's ready, so if she's not ready, I guess the missed chemo session won't make a difference as she may have further sessions anyway.

To top all this, the doctors in the hospitals finish their rotations this weekend so from Monday there will be a whole new bunch of rookies to deal with. Some straight out of med school! We keep our consultants though thank God!

In herself Ciara's feeling a bit sorry for herself, but this is just down to the sore throat/tonsillitis. Last week, she was running up and down the corridor with a cowboy hat on shouting "yipee-kayay!". Bit more subdued this week. It also looks like she might be losing her eyelashes and eyebrows. Had to happen sometime I guess.

For a couple of weeks before Christmas 2006, Ciara complained now and then of sore legs while we were out for walks. She had a cough and cold mid December, her temperature was going up now and then, she was pretty gloomy and off her food. This all cleared up easily enough and she seemed fine. However she didn't want to go to playgroup and would kick up a serious fuss whenever she went, enough to cause the playgroup organisers to call my wife, Yvonne, asking her what to do. I'd even sent an email to my older sister asking for advice on getting Ciara to playgroup without her causing a major scene. On Christmas Eve, 2006, Ciara started to limp and was visibly in pain. By Christmas Day, she could hardly walk. She was such a sweetheart though, sitting in bed saying "this is the best Christmas ever!" after finding a cheap plastic dinosaur in her stocking. At that point she thought that was all she was getting but was as happy as anything. We decided to let Ciara have her Christmas morning before heading off to the 24 hour County doctor to get her checked out. The doctor thought it may be something called Perthe's disease, a rareish ailment affecting kids, and advised us to go to A&E, Portlaoise for her to be looked at. Ciara was admitted for observation after a few hours in the A&E waiting room. The following day, St. Stephen's Day, after an X-Ray and Ultrasound she was diagnosed as having Irritable Hip, or Toxic Synovitus. This is common enough really and often affects kids who've had a cold or flu. The treatment is rest, relaxation, TV, chocolate, that kind of thing. She was kept under observation for a bit as she was getting a temperature now and then. Ciara was allowed home the following Friday, 29th December 2006. She wasn't at home very long though...

On Christmas Day, 2006, my three year old daughter, Ciara, was admitted to Portlaoise Hospital, Ireland with suspected Irritable Hip, a benign condition easily cured with a couple of weeks rest and relaxation.

Three and a half months later, I am the father of a daughter critically ill with Stage 4 Neuroblastoma, a rare child cancer with a poor prognosis. This blog will document, for myself more than anyone else, what has happened to us over the last few months and will be a journal for what is to come to us as a family. For the first few posts, I will catch up what has been happening.

And so it began...