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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.

A dose of what’s bad for you

Daily update Posted on Tue, December 15, 2015 22:51:05

We were transferred over to the oncology (cancer) ward
on Saturday, and there was a clear plan of what was in store in terms of Cian’s

First up was an operation for a Hickman line to be
installed on Monday… basically this is a robust tube that would be inserted
into Cian’s chest so the chemotherapy could be more easily, and more safely
administered… then the chemo would start Tuesday or Wednesday.

Unfortunately, and very scarily Cian’s condition
deteriorated considerably on the Sunday night, to the point where we were told
to consider the worst. Cian’s symptoms
had got much worse and very fast. The speed at which this cancer attacks the
body can’t be underestimated. Just over 2
weeks ago Cian was a very fit, healthy and active little lad enjoying his
brother’s 9th birthday weekend with his family at Trecco Bay, Porthcawl.

So much for the plans!! It was now decided that the risk of putting Cian under
general anaesthetic for the operation was too great and that no further delay
should be given for Cian receiving the powerful drugs… or ‘strong medicine’, as we have explained it to our children.

Therefore, number one dose of chemo was given to
him first thing yesterday (Monday) afternoon.
I won’t go into the names of the
specific drugs unless anyone is interested.

As he didn’t have the Hickman line installed the chemo
had to go through a cannula (a more
fragile and temporary tube
) inserted into his arm. This had to be closely monitored by a nurse
as any leakage could have caused severe and painful damage to skin tissue. Just
goes to show how potent this crap is.

Cian was excellent during the hour it took for all
the bright red drug to filter into his veins, and even managed to fall asleep.

By early afternoon Cian had much improved, to the
point that he was asking to go for rides in his wheelchair not that we could go far as he is connected to a variety of different
machines using various different tubes.
we took him down to the playroom, where we were quickly met by some of my
family who decided to visit.

It was great as I had initially told them to not
expect too much due to how poor he was in the morning, but he had a good few
hours of almost being the Cian we know.. and also got to meet Santa (again).

This turnaround in his condition could not be
attributed to the chemo, however much we want the drugs to kick in quickly, but
more likely due to some of the other stuff they are pumping into him.

Today (Tuesday) he had his second dose of the same
chemo drug, which went in without any hassle.
After that he has slept most of the day.
I don’t think that this is a side effect of the chemo but probably due
to him being in less pain and more relaxed, and needed to catch up with some of
the sleep he has lost in the last 2 weeks.

What has also been positive is that we haven’t seen
any of the more immediate side effects associated with some chemo drugs such as
nausea and vomiting. Don’t get me wrong,
we are under no illusion that this is a breeze and that there will be no
adverse reactions. This drug will be
attacking his cells (both good and bad cells), and his body will pay a price…
but this is the nature of chemotherapy, that it will make you feel a lot worse
in the hope that it will make you better in the long term.

There will be no more chemotherapy now for a couple
of weeks, but this doesn’t mean that we can put our feet up. We will be preparing him for radiotherapy (which will start in a few weeks) and for
the installation of his Hickman line (which
can now hopefully go ahead as his overall condition has stabilised
)…. But
these will be covered in future blogs!

Welcome to our blog

Intro Posted on Tue, December 15, 2015 15:54:44

Thank you for taking the time to visit our blog.

On the 20th November 2015, Cian started
complaining about tummy pains in the form of stomach cramps and pains / itching
at the top of his legs.

As he was just
recovering from a cold we, as well as the medical professionals (GP and
A&E) put this down to probable abdominal migraines.

But as the days went on and the pain got worse, we (but
especially mummy) got increasingly concerned and wouldn’t accept that there was
nothing more medically wrong with our baby.
As a result, he was admitted to the Royal Glamorgan Hospital on 25th
November for investigations to take place.
It wasn’t until the 27th November when Cian began to lose the
use of his legs that it was recognised that these symptoms presented a much
more serious issue.

Cian was subjected to a number of tests and scans, until
much to our horror and disbelief, a Magnetic Resonance Imaging (MRI) scan
uncovered a tumour that was growing on his spine.

He was immediately rushed to the University Hospital of Wales
Hospital (UHW), where he underwent an emergency operation to safely remove as
much of the tumour as possible. Although
we were told that the procedure went as smoothly as these kind of invasive
surgeries could, there is always unavoidable damage and trauma to the spinal
cord, on which the tumour was situated.

This meant that Cian had lost all feeling from below the
waist; and although he has regained some sensation and twitching movements in
his feet and legs, the consultants are somewhat pessimistic over his long term

He was then admitted to Noah’s Ark Children’s Hospital, newly opened annex to UHW that has great
facilities to look after sick and injured children.

On the 7th December we were delivered the
devastating news that the tumour is cancerous, although we had enough hints and
indications to prepare us for that diagnosis. This was made worse by
being informed that ‘seeds’ of the cancer had impregnated the brain.

As the cancer has affected his entire Central Nervous System,
Cian is in constant pain from headaches; and nerve pains in the back, tummy and
legs. This is being controlled as much
as possible by a concoction of different medication.

We have been told to expect 6-8 months of intensive
chemotherapy and radiotherapy to improve Cian’s symptoms and hopefully rid him
of the disease.

The form of cancer Cian has is Atypical Teratoid Rhabdoid
Tumour (AT/RT). This is a rare and
extremely aggressive condition commonly diagnosed in childhood. I will leave it to you guys to conduct
further research if you want, as it doesn’t make very pleasant reading!

We are using this blog to update everyone on Cian’s
progress, as this is the easiest way to communicate to as many people as
possible, as we are overwhelmed by the interest shown by family, friends and
strangers alike.

Any charitable / fundraising activities will also be posted
here, as so many of you have wanted to get involved and contribute in lots of
different ways. We will then also be
able to tell you how any monies raised will be distributed / spent.

Hopefully, this blog will also raise the awareness of this
form of cancer and encourage future research that could possibly result in new
treatments or cures.

For this blog to be successful, we encourage you to leave
sensible and appropriate comments; and although we won’t have the time to
respond to every submission we will take the time to read them all.

The Cases