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

We also have a dedicated Facebook Page.

Happy St David's Day!

Daily updatePosted by Daddy Case Tue, March 01, 2016 22:53:51

When we got Cian back to the hospital on Monday morning it was a little frantic. The ward continues to be busy. There are a few new diagnoses but also an influx of children who are part-way through their treatment and are usually at home, but have picked up an infection so require extra observation.

The important thing for us was to see whether Cian was well enough to start his next course of chemotherapy; so he had blood taken to get reviewed and also an electrocardiogram (ECG).

He should have had an ECG before his very first course of chemo back in December, but as it was given to Cian in an emergency situation the ECG was a luxury he could not afford.

We also got Cian weighed, and unsurprisingly he had lost weight whilst in our care over the weekend. Not necessarily our fault, it’s just that Cian’s lack of appetite is continuing to cause us a few headaches. So the less food we can get in his mouth means the more food that has to go through his nose by way of his liquefied food supplement.

Before his latest ‘Jelly on the Belly’ scan (as Cian refers to all sonic scans such as ultrasounds), Cian would have his physio session.

We were back down the Dolphin Zone playing a variety of games that would continue to test Cian’s strength and balance. He had plenty of energy as he ‘bust some dance moves’ as a victory dance every time he wins a game or gets a strike on the skittles.

The ECG took place in the Starfish Zone which is adjacent to Dolphin. It was a strange and nervy experience.

The scan took almost 3 quarters of an hour, which to my uneducated eye was a long time to check if Cian had a regular heartrate.

If any of you have had or been to a pregnancy ultrasound, you will know that you would never choose to play poker with a sonographer. They take their measurements, photos and recordings of the screens without any emotion on their faces; and as time ticks on you start to convince yourself that there is something wrong. It was taking so long that Cian decided to snooze through most of the process.

As I am writing this blog, I am also conducting some research… and although we were told Cian was having an ECG by all the healthcare personnel on the ward, I am now more convinced that what Cian had was an echocardiogram. Although they sound very similar, the latter is much more involved. These are carried out by cardiologists.

At the end of the procedure a couple of consultants walked in to review the results, After a few discussions between the professions and scratching of chins, they suddenly smiled and said that Cian’s heart is healthy and in good working order….. sigh of relief!

I then had to head home to take care of Dylan and Bethany. Chemotherapy was now going to recommence on Tuesday (St David’s Day).

One of the miracles attributed to the Patron Saint of Wales was that whilst preaching to a large crowd, the ground beneath his feet so that he could be seen and his message heard.

Taking a (less miraculous) leaf out of St. David’s book, I decided to write to my Member of Parliament Huw Irranca-Davies to urge him support a parliamentary debate into funding for research into Brain Tumours. Hopefully my message will make it a little further, not by the creation of a new hill, but the power of this blog and social media. Thanks to those who have liked and/or shared my Facebook post, into which Huw Irranca-Davies has been tagged.

I haven’t been into the hospital at all on St. David’s Day, as I had the privilege to see Bethany and Dylan and perform in their respective Eisteddfods. It was a shame that Cian couldn’t perform with his classmates this year, but I have taken a few photos and videos to show him when I next see him.

I have had regular updates from mum through the day. A synopsis is as follows:

He was a bit lethargic during physio this morning, but made up for this when he had a ‘dance-off’ with Jasper the Entertainer. He would have been extremely pleased to see Jasper who has been poorly for the last couple of weeks so hadn’t been to the ward.

He has been creating an Easter Bonnet, which will need decorating in the coming days.

More importantly was the start of his next round of chemo, which signifies the second cycle. I will try to explain Cian’s chemo protocol in a future blog, but I will try to make things a little clearer as Cian’s chemo is made up of 3 cylcles, each with 3 courses and each course has seven different chemotherapy drugs with multiple doses… have I made it clearer??

Anyway, it is a lot of very powerful drugs.

The drug he is having today is Doxorubicin, which is the chemo he had administered as an emergency in December. This time though it is being given more slowly and through his wiggly (which wasn’t put in the last time).

As a nod to St. David’s Day the drug is red in colour and he will have 2 lots of it over the next 48 hours.

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