Cian's Kicking Cancer

Cian's Kicking Cancer

About my blog

This blog will be updated by my mummy and daddy to let everyone know how I'm doing and tell you all about the fantastic support that I am receiving from lots of very caring charities.

We are in the process of creating a charity called Rainbowfish that will campaign for more awareness of the rare and aggressive cancer that Cian has been diagnosed with, to encourage research into new effective treatments and potential cures.

It will also be used to as a platform to offer a network of advice and support for other parents in a similar situation.

We are extremely grateful to our family, friends and supporters for fundraising and sending us messages of encouragement.

We also have a dedicated Facebook Page.


(Don't) Take Me Home!

Daily updatePosted by Daddy Case Thu, June 30, 2016 17:18:45

A lot has happened since the last blog, and almost all of it is positive.

At the ward round last Thursday it was agreed that Cian had met all his targets, and his special feed could be reduced over the weekend with a view of discontinuing it this week and a possible discharge!

What this meant was that during the day Cian would no longer be attached to his TPN feed; and although he was not allowed to join the other children of the ward in the playroon (due to the ongoing isolation) we were given permission to take him out of the hospital between the hours of 11:00 and 18:00.

I did the most selfish thing last weekend when my mate announced he had a spare seat in his car to go over to Paris and watch theWales v Northern Ireland game at the Fanzone by the Eiffel Tower. It was an opportunity I culdn't miss, especially as Cian was well, so thanks to short notice begging of my in-laws to look after Dylan and Bethany for a couple of nghts I went on a very enjoyable break.

I don't think Cian missed me too much, as mum took the kids bowling on the Saturday and Cian had his first trip home in quite a few weeks on the Sunday. It was obvious that Cian enjoyed his time out of the hospital, so the focus was to ensure a discharge very soon.

When I got back from Paris at 5pm on Sunday I took Cian back to the hospital and prepare ourselves for what could possibly be our last week at hospital!

If this was the case we would need to make the most of it by making sure Cian had productive tutoring and physio sessions.

While the weather was OK, we managed to take Cian outside. It is clear to see that his strength and enthusiasm to walk independently is growing all the time.

On Monday evening we had a visit from uncle G and the England v Iceland game to look forward to. I won't dwell on the England result as Cian wanted them to progress in the competition.

When we woke up on Tuesday, we were soon informed that Cian's TPN feed had been reduced to a level where it could now be stopped altogether, and the doctor's announced that Cian could be discharged later that day!!

Wow, that came as a bit of a surprise as we were expecting that to happen a little later in the week. We had the choice whether to stay another night, but after leaving the decision to Cian we were soon saying our goodbyes to everyone.

It was 7 months to the day since he was first admitted, and we only managed to get a few days at home in all that time. So it was a tad emotional farewell, but welcome nonetheless.

Although Cian is now entitled to ring the "End of Treatment Bell", it wouldn't be much of an occasion as Cian's isolation means that nobody would be able to witness it. So we have postponed that event for a few weeks time. But we couldn't leave without marking it in some way, so we got him to wipe his name off the ward board.

It was fantastic to get him home, and Dylan and Bethany had a great surprise for when they got home from school.

We had accumulated to much stuff in all that time, I needed to return to the hospital on the Wednesday and collect all our things as well as hand back our accomodation keys and parking card back to LATCH.

We are now officially discharged from the ward, but Cian's journey does not end there.

We had an appointment with our community nurse today; Cian has a community physiotherapy session at Royal Glamorgan Hospital; and next week we have a clinic appointment back at the hospital.

Cian still has his wiggly (Hickman Line) in and also his NG tube. These are likely to be there for a few weeks, until we are sure that Cian does not need any more medication and his appetite is back to a satisfactory level.



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Posted by Shirley stone Fri, July 01, 2016 08:23:09

Wonderful news. Thank you Lord Jesus. May his health continue to grow and grow and your able look back a year today and say WE DID IT SON

Posted by Toni-Marie Thu, June 30, 2016 20:55:30

Wow amazing progress and very quick discharge too. You have all been amazing throughout these 7 months look at what you have been through together, what Cian has achieved and time now at home to build up Cian's strength. So pleased for you all lots of love xxxx

Posted by Amy Thu, June 30, 2016 19:25:45

This post brought happy tears to my eyes. Seems like so much to go through for all 5 of you in 7 months. You should be very proud of all time children, they're amazing. Xx