Our thoughts and prayers go Neil and Tina Hughes, whose beautiful little girl Samantha passed away earlier this month. Samantha's fantastic blog linked here has been an inspiration to us during the difficult times. The World has lost some of it's sparkle now.
The whole family went to the hospital for a day trip yesterday. What a life! Ciara is still doing well as far as we can see. There's no scanning or MIBG type tests at the moment and there won't be for a good few months so we don't know of any cancer progression, fingers crossed there isn't any. The trips are just for blood tests and to make sure her marrow is doing what it should, and it sure is.
Her tummy is looking much better, considering it was only three months ago she looked like a heavily pregnant four year old. The doctor can't feel the liver any more through he belly, definitely a good thing! Unfortunately the pressure of the VOD (catchup: Liver disease caused by treatment) has given Ciara an umbilical hernia. Not a major thing, it's not causing her any discomfort. We'll keep an eye on it then later on, once all treatment is complete, we can think about surgery to fix it. It's purely cosmetic. Again, she won't be back in again for a month.
"Go on", you say, "give us another pic!". I aim to please all hypothetical readers:
...as I'm at work (ssshhhh).
Please sponsor my Sister in Race for Life, in aid of Cancer Research UK.
http://www.raceforlifesponsorme.org/buggyworkout
And to prove I'm not all take-take-take, here's a picture of Ciara taken the other while we were on a dinosaur hunt. Alas, all we could find were fossilised brontosaurus bones (or tree roots if you have no imagination). You would not believe her energy levels and Joie de Vivre:
Ciara is doing well. Doesn't need to go back in to the hospital for a month. Looking good, putting on weight and her hair is growing back. Off to see her grandparents this weekend.
The total raised for the sponsored walk stood at €9634 as of last week. On Tuesday, St John's Ward and Ronald McDonald House were presented with cheques for €4817. This is a tremendous amount and to put it in perspective, St John's told us that with it they can buy three new hi-tech beds for the ward to replace the old iron-frame ones.
I'd like to again extend a huge thanks to everyone who took part and those who donated, particular thanks go to Ciara's grandparents for organising the event.
We've had a good few weeks back home, trying to get back to some semblance of normality. Ciara has been doing so well: she's eating well, has lots of energy, and, most of the time, is in great form! We've only need to go up to the hospital once a week since we came home, and there have been no unfortunate incidents to report. It is SO nice have to just visit the outpatient's department (Haematology and Oncology Out Patients or HOOPS) without a stay in the ward, or even the day unit.
A couple of weeks ago we were told that Ciara wouldn't be a good candidate for radiotherapy as the risk to her liver and remaining kidney would be too high. The recent MIBG showed some "hotspots". They are small, and definitely less active than the last scan, but they are still there. At this stage we don't know if they will progress any further, and we can only hope that they won't. However, as the last urine tests showed, there doesn't seem to be any neuroblastoma activity as such. Now that Ciara won't be having radiotherapy, she has started on the next phase of her treatment, which is Vitamin A therapy. These come in capsule form, 8 a day for two weeks on, two weeks off, for six months. She takes them with no fuss at all, much to the surprise, and relief, of all. It dries her skin out quite badly and makes the corner of her mouth sore, so vitamin E is cream is used to ease it. She still looks fab though!
Her tummy is looking much better too, pretty much normal now and all the levels are good, so it looks like we've got the VOD licked. Only a month or so ago I was thinking we would never get rid of it, but Ciara amazed us again. She hasn't been sleeping too well, it's been taking some time for her to get used to sleeping on her own again, and she has bad dreams. I suspect this may be related to the fentanyl patch (painkiller) she has. We're weening her off this soon so we'll see.
Ciara now only has to go up to Crumlin every two weeks, and the "clean diet" was eased today to allow Ciara a very special, and much asked for treat. For the last two months McDonalds were "having all their ovens cleaned" so we couldn't go. Today, it would appear, they had finished cleaning.
A bunch of hardy souls are dusting off their walking shoes for a sponsored walk in aid of St John's Ward and Ronald McDonald House. These brave folk will be setting out from Bennett's Bar in Warrenpoint at 2pm on Sunday 24th Feb and will be trudging up to Newry and back.
There aren't words to describe the thanks we owe to St John's and Ronald McDonald House, so please help by giving LOTS OF MONEY. Just click on the Donate button on the right to pay securely with PayPal.
Just a quick note to say that we're all back home now! We were able to escape last Friday and have slowly begun to get some kind of normality back in to our lives. I can't thank St John's Ward and Ronald McDonald House enough for the support they gave us during the 105 days of our stay, having to look after ourselves will come as a shock. Also, the Tucker family sends a huge thanks for all the words of support, presents and letters we've received. In particular, thanks for all the Christmas presents Ciara received (where are we going to put them!).
Ciara's doing well and is in very good form, getting home was a great tonic for her. She's been eating well and that and the NG feed have got her back on her feet and looking fantastic. She still has a big belly from the VOD and we don't really know how long that's going to take to get sorted out. The MIBG results showed that there were some neuroblastoma cells dotted around, and in particular there were some near the kidney. We don't know if these are active or progressing and we probably won't ever know but for the time being at least, we're not seeing anything from the other results indicating neuroblastoma activity. Next week I think, Ciara will have another CT scan concentrating on the Kidney area to see if they can map a route for radiotherapy.
Today, Ciara wants to write her letter to Santa and put up the Christmas decorations. Only eleven months too early!
