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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.


No Brainer!

Cancer Awareness Posted on Tue, April 19, 2016 23:36:17

As I start to compose this blog post, it is a little more
than 24 hours since the conclusion of yesterday’s Brain Tumour Debate at
Parliament.

The debate was tabled due to a successful e-petition created
by Maria Lester, whose brother Stephen Realf lost his battle with a Brain
Tumour at the age of 26 after being diagnosed at 19.

When Cian was diagnosed towards the end of 2015 the petition
was already gaining traction. Although
Cian’s primary tumour was attached to his spine; this was unusual for this
cancer type which almost always targets the brain. Plus, Cian’s MRI scan had shown that seeds of
the cancer had impregnated his brain.
Therefore when we were educated of the unfavourable outcomes associated
with a brain tumour diagnosis, and the lack of clinical trials and research in
this area, it was clear that we should add our voice to this campaign.

Even though it is unlikely that any positive action
resulting from a change in Government policy would benefit Cian, I felt
motivated that other children should not have to suffer the same fate.

Once the petition had closed, I then felt compelled to
contact my MP in order to secure a Parliamentary debate; and once the date had
been set I had to lobby once more to ensure that Cian’s situation could be
highlighted.

Although my constituency MP could not act on behalf of Cian,
due to him standing down as an MP to pursue a campaign to become a Welsh
Assembly Member, he had secured the services of Nick Smith, MP for Blaenau
Gwent to represent him.

I asked Nick to focus on how a cancer diagnosis to a school
child can impact small communities, especially when it exposes the horrors of
cancer to the friends of Cian. But also
how positive community support can be.

When I arrived at Parliament it was evident that this was a
popular debate, and my first priority was to secure a place in the public
gallery; which I managed to do. It would
not have been ideal to travel to London and have to watch the debate via a TV
screen in an adjoining room. Fortunately
the trip only cost me less than £20 thanks to very reasonable coach prices and
hotel reward points.

When we were escorted into the Grand Committee Room (where
the debate was taking place) it was already quite full with MPs, and there was
standing room only in terms of the public gallery.

It was mentioned on a number of occasions during the
afternoon that this was one of the best attended debates that Parliament had
seen within that room in recent times.
That is extremely encouraging to gauge how much support there was for
this cause.

Sir Edward Leigh who chaired the first part of the debate
even had to point out that there would be a time limit of 4 minutes allocated
to each MP who wished to speak to ensure that everyone gets a say.

The debate was opened by Helen Jones, MP for Warrington
North and chair of the Petitions Committee, who delivered an extremely
impactive speech clearly outlining the issues and recommendations that the
committee had identified in their report.

I would encourage everyone to watch and listen to her speech
(or read) via the links at the end of this blog post.

The MP speeches that followed were factual and impassioned,
mostly from a position of personal experience or encounters with constituents
who had been affected by brain tumours.

I am incredibly grateful to Nick Smith for his contribution.

There were incredible statistics that demonstrated that
funding for brain tumour research was clearly inadequate, and that lives were
being lost and careers were being blighted as a result.

Only 1% of Government funding for cancer is allocated to
Brain Tumours even though it is the biggest cancer killer to those under 40;
and while other cancer survival rates had increased by 50% in recent years,
Brain Tumour rates had only improved by 7% over the same period.

I am glad that I made the decision to attend the debate, and
I sincerely hope that momentum gathers pace to ensure that after the words,
action swiftly follows.

LINKS

Link to the original petition and associated documents

Link to the debate footage

Link to the Hansard text of the debate

Link to the WalesOnline article



Why Cian?, Why Us?, Why Anyone?

Cancer Awareness Posted on Wed, March 16, 2016 21:39:13

It’s taken me a long time to address what are the first
questions you ask when receive this kind of diagnosis.

The complete unfairness of it all gets you questioning
everything, and I mean everything!

For those who have faith, it challenges your beliefs; and
for those who do not have faith it challenges your lack of beliefs.

Is it karma? Has
Cian, we, or anyone he has had contact with triggered the cancer?

We are now in a position, not to necessarily say what the
cause was, but to at least rule out some things.

The first thing to understand is the type of cancer that
Cian has. In my first blog I told anyone
who was interested to research it themselves, as it might not be pleasant
reading. I am now in a position to be
able to discuss Cian’s condition and any consequences relating to it.

There are a few articles on the internet relating to it, but
I am going to use the text from www.dana-faber.org,
which I think has the most easy to understand descriptions. Please note, I have not had permission from
them, which I hope to retrospectively request… so this may need to be reworded
in the future. I am going to use their
text and then write in bold itallics what our experiences have
been.

|START OF DANA-FABER TEXT|

What is an atypical teratoid rhabdoid tumor?

An
atypical teratoid rhabdoid tumor, often called AT/RT, is a very rare and
fast-growing tumor of the central nervous system. If your child has been
diagnosed with AT/RT, there are a number of things that you should know:

  • AT/RT’s
    are part of a larger group of malignant tumors called rhabdoid tumors,
    which can occur outside of the brain in the kidneys, liver or other
    locations. Cian’s primary
    tumour was on his spine, with seeds of the cancer being found on the
    brain.
  • In
    most cases, AT/RT is associated with a specific genetic mutation (INI1)
    that can occur spontaneously or be inherited. We have recently
    had the results of our genetics tests which show that Cian does not have
    this specific mutation. I will go into the genetics further in
    this article.
  • AT/RT
    can occur anywhere in the brain but are most commonly found in cerebellum
    (base of the brain) and brain stem (the part of the brain that controls
    basic body functions). As previously stated, Cian’s tumour was located in his
    spine, which makes his case particularly rare.
  • This
    type of tumor usually occurs in children under 3 but it can sometimes
    occur in older children and adults.
    Cian was 4 and three quarters when he was
    diagnosed.
  • AT/RT
    was previous thought to be a type of medulloblastoma. However, it is now
    known to be a separate type of tumor and is treated differently.
  • AT/RT
    represents only 1 to 2 percent of childhood brain tumors. Childhood cancer
    is thankfully rare, and Leukaemia make up the majority of these
    cases. Brain tumours are more rare,
    and AT/RT only accounting for 1 or 2 percent of those hopefully highlights
    how rare it actually is.

What causes atypical teratoid rhabdoid tumor?

As
a parent, you undoubtedly want to know what may have caused your child’s tumor.
More than 90 percent of cases of AT/RT are associated with a genetic defect.
However, the cause of this abnormality is not known.

  • This
    genetic mutation (INI1) may be inherited, in which case tumors may also
    occur in the kidneys and other parts of the body.
  • This
    defect may also occur spontaneously.

The genetic mutation they are describing is within SMARCB1, which is
a gene known to supress tumours.
Therefore if that gene is ‘inactive’, then your body is going to find it
difficult (or impossible) to combat any tumour.

We are so relieved that Cian is (as much as they can tell)
unaffected by this, so this gives me the confidence that Cian’s body can fight
any potential future recurrence from occurring.

It’s
important to understand that these and other brain tumors most often occur with
no known cause. There’s nothing that you could have done or avoided doing that
would have prevented the tumor from developing.

We have been told by our consultant that there was nothing
environmental or trauma related that would have triggered Cian’s cancer, and “nobody
was to blame”. I wasn’t sure whether
this was a statement of fact, or whether it was to try to prevent parents from
second guessing every decision they have made; or reliving every knock, bump or
scrape that their child ever had. I am
not the type of person that would be satisfied with the “it is just bad luck”
statement.

What are the symptoms of atypical teratoid rhabdoid tumor?

AT/RT
grows very rapidly and, as a result, symptoms can develop quickly over days or
weeks. Common symptoms of AT/RT include:

  • headache
    (especially upon waking in the morning)
  • nausea
    and vomiting
  • fatigue
    and lethargy
  • trouble
    with balance and coordination
  • increased
    head size in infants (hydrocephalus)

Your
child’s symptoms may vary based on his age and the location of the tumor.

The
symptoms of a brain tumor may resemble other, more common conditions or medical
problems. Always consult your child’s physician for a diagnosis.

Cian’s symptoms presented as stomach pains that were originally
attributed to abdominal migraines. In
reality it was the pressure of the tumour restricting the spinal cord and
transmitting the nerve pain to the front on his torso.

|END OF DANA-FABER TEXT|

What
I hope the above shows is that not only is Cian’s condition rare, but the
positioning of the primary tumour; the manifestation of the symptoms; the age
that Cian fell ill; and the fact that no genetic link has been found,
demonstrates that our situation is even more unprecedented.

So
back to the genetics….

Although
I am employed in forensics my scientific knowledge of DNA and genetics is very
limited, but I do have a few friends and colleagues who specialise in this
area, so I want and expect to be challenged on anything I say about the genetic
elements.

Unfortunately,
I do have some experience in cancer and DNA as mummy case (Lorraine) was
diagnosed with triple-negative breast cancer in October 2012 at the age of 33.

Thankfully,
through the excellent service provided by the NHS, through the treatment of
Chemotherapy (including a clinical trial), surgery (lumpectomy) and
radiotherapy she is now in remission.

During
this time we were told that Lorraine’s cancer had a 10%-15% chance of being
genetically related due to possible mutations of the BRCA1 or BRCA2 genes and
we were encouraged to be tested. This was highlighted in the media by
Angelina Jolie and Michelle Heaton deciding to have preventative mastectomies to
hopefully stop the onset of cancer.

At
our meeting with the genetic specialists we were told that there would be no
funding for these tests in Wales, despite recommendations that anyone over the
10% threshold should receive them (which had been adopted in England).

We
conducted a successful campaign to have these recommendations implemented in
Wales. http://www.bbc.co.uk/news/uk-wales-31555794

So
we knew that Lorraine was negative for BRCA1 and BRCA2, but with Cian’s
diagnosis it flagged up other potential possible genetic issues, especially due
to the young age of both.

As
previously mentioned the INI1 / SMARCB1 gene was explored for a mutation, as
this accounts for over 90% of AT/RT diagnosis.
This was found to be normal.

The
second gene that was tested was P53, which is also a known tumour suppressor. This is linked to a condition called Li-Fraumeni
Syndrome
. Thankfully, this was also
normal. The prospect of both Lorraine
and Cian having Li-Fraumeni with Dylan and Bethany also having a 50/50 chance
was incomprehensible, as it would have significantly increased the chances that
I would see them all through cancer diagnoses.

Therefore,
we have been told by the consultant that there is nothing that we could have
done to prevent the onset of this cancer, which rules out trauma and
environment; we have also had test results that have shown (as far as current
research allows) that there is no genetic causal link.

So,
what the bloody hell has caused it!!

That is the question that I am going to pose the academics,
scientists, researchers out there. As I
have said, I am not one to be satisfied with “it’s just bad luck”. I have worked with scientists for a long
time, and what makes them so brilliant and annoying in equal measure, is their
ability to ask “Why?” after every statement… like an annoying 3 year old… but
also with the motivation to answer their own question through research,
experimentation and testing.

I will be forwarding this post onto a number of people and
institutions that have already conducted some research into AT/RT and hope that
someone will take up this challenge.

This is because although it is reassuring to know that no
genetic link has been found, the fear of whatever caused Cian to develop this
dreadful disease in the first place could still be present after Cian has
completed his treatment.