Sore throat and future plans

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.