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.

Radio Ta Ta!

Daily updatePosted by Daddy Case Thu, February 11, 2016 22:56:06

So there you have it! After 6 weeks and 29 doses, Cian’s radiotherapy has now come to an end.

It is difficult how to sum up emotions when you reach such a significant milestone.

We are obviously thrilled that not only has he endured what is an extremely intensive course of treatment to his brain and spine; but he has actually thrived!

We were told to expect Cian to become lethargic, suffer nausea and a string of other possible short term side effects; when in reality we have seen remarkable progress in both his cancer related symptoms (headaches, speech, hearing), and his mobility.

But we are also acutely aware that the treatment does come with a price in terms of long term side effects, which will have to be managed when they rear their head in the coming years.

We need to pay tribute to the large number of people who supported us through this step of our journey...

* Alison Johnson, who showed such empathy and care on our first visit to Velindre when we were at our most vulnerable.

* Dr. Owen Tilsley, our consultant oncologist at Velindre who oversaw (but rarely seen) all of Cian’s treatment.

* All the staff that worked on LA1 who were so amazingly kind and generous to Cian.

* The on-call anaesthetists who arrived every day to work their magic by putting Cian to sleep and safely waking him again.

* The Ambulance Liaison person Paula who always ensured that Cian was prioritised for his transport back to Noah’s Ark, and the rest of the Welsh Ambulance Service drivers who were fantastic escorts to and from Velindre.

* The rest of the staff and volunteers based at Velindre who always made a fuss of Cian, and always polite and courteous to mum and I.

* Most of all, Colin and Sue who work with the anaesthetists and were without fail the first at Velindre to prepare everything for Cian and the last to leave when his treatment finished. They were a source of constant amusement to Cian, and incredible support to us parents.

When we got back to the ward today, Cian’s room had been decorated with a banner from the play staff and a chocolate cake awaited us! We had a small impromptu party just to mark the occasion.

But this is just a milestone, so there could be no resting on our laurels. It was back to medications, physio and Glomerular Filtration Rate (GFR)!!

As a parting shot, the anaesthetist at Velindre inserted a cannula into Cian’s hand. This wasn’t to be particularly cruel to him, but to prepare him for a test later that morning. A GFR test is used to measure kidney function, and works by injecting a radioisotope into the blood stream, which can then be measured at given intervals throughout the day by extracting a blood sample and sending it for a test (I hope I got that right).

By having the cannula inserted whilst under general anaesthetic prevented some trauma to Cian, that didn’t prevent him becoming upset when the radioactive liquid was injected into him, and the experience will no doubt have marred his first trip to the day-beds section of Rainbow Ward!

Today we have been notified that results of genetics tests have been returned. The limited research into AT/RT has found some causal links to genetic mutations. Also there was a fear that there might be something hereditary we would need to be concerned about.

It will take us some time to digest what those results are and ask relevant questions. Even though we are learning quite a lot, there is still a limit to what we can comprehend and process. My only knowledge about DNA derives from the forensic aspects, which have little or no bearing to this level of genetics!

We also have a clearer idea of what form Cian’s next course of chemo is likely to take when it starts on Monday; but again we have a few queries around that and what it will mean to us practically.

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