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.


Tummy Troubles

Daily updatePosted by Daddy Case Mon, June 13, 2016 22:28:15

The end of last week basically went according to script.

Our daily routine at the hospital were fast turning into 'Groundhog Day', as Cian continues to be isolated in his room while being given a variety of different antibiotics.

His tummy is continuing to cause him lots of grief, and he is still being tube fed directly into his bloodstream.

Thursdays are probably the most important day of the week on the ward. It is when the "Grand Ward Round" takes place.

This is a meeting of all the different specialists and consultants where they discuss each patient and make decisions and plans on what treatments and interventions are likely to take place over the next 7 days.

It was decided at this meeting that Cian be referred to the "gastro team". Unfortuantely they are not a group of top notch chefs as the name suggests, but a team who specialise on the digestive system.

The problem is Cian's tummy troubles cannot be easily put down to any one thing. He has has chemotherapy, radiotherapy, chronic sickness, infections, bouts of constipation & diarrhoea, loss of appetite and a mountain of daily drugs. Therefore, Cian will now undergo further tests, scans and screens to try to establish what is going wrong.

The hope is that whatever the issue is, it will be something that is short term and easily treatable.

It is not surprising that the oncology consultants and reluctant to give Cian his final round of chemotherapy until there is a greater understanding of what is going on. I even asked the consultant whether a decision may be made for Cian not to receive his last chemo? This was obviously a point of discussion during the Grand Ward Round, and it was pointed out that there may be convversations along those lines if it is though more chemo may cause further complications.

It is a very tricky dilemma, as on one hand we have already received a very positive MRI scan that show that treatment thus far has been successful, so could it be that any more chemo is just overkill.... or could this last chemo be critical to ensuring there is no future recurrence. We all know that doctors are always keen that we complete any course of medications.. even after symptoms are gone!

Every time I consider this question I come up with a different answer.

As mentioned in the last blog, there was no prospect of Cian going home on the weekend, so the family spent time at the hospital together.

I spent the first part of the weekend with Cian, which I have to say was enjoyable, as we watched the oping cermony and game of Euro 16 Friday night; the Wales and England rugby matches on Saturday morning; and the monumental Wales v Slovakia game on Saturday afternoon.

I am so pleased that Cian likes his sport, as it is something that is keeping us sane during his time in isolation.

So today (Monday) saw the start of Cian's tummy investigations, and with it brought a change in environment and mood.

Cian had to go to the hospitals Octopus Zone (Radiology) for his tests. A very rare and welcome out of his room and off the ward.

I have mentioned in previous blogs that I consider the radiology department to be absolutely amazing. There is a variety of different machinery there for performing scans and screens of all kinds. You would think that such an environment would be daunting and scary to small children, but there is so much there to distract, entertain and relax them.

Cian had a Barium solution introduced to his digestive system, and the flow of this chalky liquid was monitored via a series of x-rays. As the full digestive process takes a number of hours, we had to make a number of trips back and forth.

It was also an opportunity for Cian to stretch his legs. As we keep stressing, his progress in terms of his mobility is critical; and for the last few weeks the chance to get Cian on his feet have become less and less and the majority of his time is spent in bed.

So to see him walk with control and confidence today was so pleasing to us and to his physiotherapist. The change in scenery and increase in exercise also contributed to a complete change in mood and wellbeing. Cian was much more alert and happy.

Cian also got to see a new mural that has been erected in the hospital corridor. It is an impressive picture.

The results of these tests should be known in the next day or two.





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