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.


The (not at) home stretch

Daily updatePosted by Daddy Case Fri, June 03, 2016 21:56:47

So I am writing this blog on a Friday night at the hospital, so you might be able to guess that Cian is not going anywhere this weekend.

It is not really because he is particularly ill, but due to him being 'fed' through his tube.

That said, we are still in isolation. Not becuase Cian has tested positive for any infections, but because we can't yet prove that he hasn't got an infection. We are currently waiting for tests to be completed on just about every bodily fluid that they have got out of him.

We are getting a bit of cabin fever in our room, but we are not complaining, as we have managed to escape eviction from the ward... although that threat hasn't yet gone away just yet!

So as we expected, his 'wiggly feed' (TPN) was put up on Wednesday evening while Uncle G was here on his visit.

It is a strange concoction of chemicals, and the ingredient list on the bag looks like a full list of the periodic table with the amounts of each of the elements which is going into his body. Another bag of lipids (fats) are simultaneously going into Cian's body.

It appears that the majority of the TPN includes selenium. Now this is an element that I am guessing most people will know very little about. The only time I had ever come across it before now is it plays an important part in the 2001 sci-fi film 'Evolution'. So I remembered from that movie that it is an active ingredient in Head and Shoulders shampoo.

Now I have conducted a little more research I have found out that it is a pretty nifty little element with lots of nutritional benefit.

Although we didn't want to have to resort to TPN, Cian is now painfully thin and he has less and less energy. We are hoping that it will give him the lift to take him through his last chemo.

That was provisionally pencilled in for today, but for a variety of different reasons, that has now been postponed until sometime next week.

We hope to make it a big event. Some of you might remember from a much earlier blog where I wrote about the 'End of Treatment Bell'. Once Cian has completed his last chemo he will get to ring this bell and mark the biggest milestone yet! It must be remembered that it doesn't signal he's cured, but it does mean that he will have finished a very intesive protocol of treatment.

Different families approach the occasion very differently, and it is a very individual experience. Some may opt not to mark the occasion, and others will not make too much of a fuss. Anyone who know us will understand that we will embrace it as a positive milestone and use it to motivate Cian (and friends and family), and an opportunity to share that with the staff at the hospital.

On Thursday Cian had a GFR test. This is something we were a little concerned over as it involves the insertion of a canula into Cian's hand, followed by an injection of a radioative isotope, which is then monitored to test kidney function.

No child likes having a canua put in, and Cian is no different... but thanks to some great distraction from Kimberley the play therapist and Doctor Matt's skills in canula insertion it was over and done with very quickly. Fortunately, I dont't think Cian will need that test again.

The ony other negative this week, is that Cian is experiencing some severe tummy pain in the evenings. It is tricky to work out what is causing it, and we just hope some of the tests I mentioned earlier will give us some answers soon.

Hope you all have a good weekend.



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