It has been incredibly busy, emotionally draining but wonderfully positive. I’m having to look back over a weeks worth of texts between me and mummy Case to make sure I remember everything.
It has all been building up for Cian’s MRI scan that took place yesterday. It is the first detailed scan of his brain and scan since he was admitted at the end of November.
But before I let you know the results of those, I will allow you to catch up with the highlights of the previous 7 or 8 days.
Towards the end of last week Cian was a bit up and down. He was being sick (which kept bringing up his NG tube), and last thing at night and first things in the morning he has been complaining about tummy pains and headaches.
Nausea, tummy pains and headaches are symptoms of loads of different ailments, and also the side effects of the majority of drugs; so most people will say that it is to be expected, and they would be right. But they are also some of the symptoms Cian was experiencing when he first became ill (albeit not as strong as they were back then), so paranoia was starting to kick in, which was only heightened by the imminent MRI.
Thankfully we still had a healthy supply of Kool’n’Soothes thanks to your generosity, which have come in handy.
Once Cian has been awake for an hour, the nastiness he feels soon dissipates and he has been all systems go.
In physio, Cian has continued to go from strength to strength as he now spends more time on his feet (with support) than he relies on his wheelchair. This is a little ironic, as we have had ramps fitted in the house over the last week.. but Cian still has a long way to go in terms of independent walking, so the ramps are still very much a necessity.
I’ve got to say, the guy who fitted the ramps was extremely good and they don’t really impact the aesthetics of the house very much at all.
Cian has still got involved with some of his ‘school lessons’ by the hospital tutors. I’ve got to say that I am proud of how keen he is to take part, as lots of the children are not pleased to have lessons… and given their predicament I can’t honestly blame them! They had a bit of a treat last week, as they were given the chance to do some ‘food technology’ by creating iced biscuits and fruit kebabs.
Not only was it enjoyable to do for Cian, but he was also eating some of his creations; which given his lack of appetite over recent months was very positive.
The big question at the end of last week was, ‘is Cian well enough to go home for the weekend?’
Cian started his latest round of chemo on the Wednesday of the previous week, which was topped up with Vincristine on the following Tuesday (last week). This meant that Cian’s blood counts were on the drop and he might need blood products. He was given platelets on the Thursday, to give those a boost and he was on GCSF daily (to help stimulate bone marrow to create more white blood cells).
So on the Friday a compromise had to take place whereby we could take Cian home on the proviso that we bring him back in on the Sunday morning for a further blood test, with the possibility of him also having a blood transfusion. Although the journey into hospital on a Sunday morning with Dylan and Bethany in tow is not one to look forward to, we agreed.
When we got home, Cian and I had a bit of a session playing Lego Dimensions on the Xbox. It is something that Cian definitely looks forward to! And we waited for Dylan and Bethany to return home from school. Cian doesn’t get to see them through the week (and vice versa), but it is like they are never apart.
On Saturday, the first job was to give Cian his GCSF. As a reminder, this is the drug that if he has it in hospital it can be administered through his Hickman Line (wiggly), but if needed at home it is injected. This is by far the one thing that Cian does not look forward to.. almost to the point that it puts him off going home if he knows he will need it. Actually when he has the injection, the experience is not as bad as the anticipation that starts when the cream is placed on his leg a half hour before.
Later I took Dylan to watch Cardiff City play Bolton thanks again to tickets courtesy of Cardiff City Foundation and Llanharan Primary School. We have been fortunate to benefit from the school being allocated so many free tickets towards the end of this season, and it has given Dylan something to look forward to. It was made even better this time as it was the Club’s Foundation Day, which included access to a fun fair and some sporting activities to take part in.. but that also came with the reminder that all 5 of us went to the corresponding day the previous year, which Cian absolutely loved!
When we got home from the football it was clear to see that Cian was not looking or feeling as well as he had been, so we settled him down a little earlier than usual in preparation for the trip to the hospital the following morning.
Due to this change in his wellbeing, we were expecting that his blood test the next day would show that he would need a transfusion, so we got everything ready for a potential stay. This was reinforced when Cian woke on the Sunday suffering his usual tummy pains, nausea and headaches…. But as we got ready and boarded the car, he suddenly seemed a lot better. This could have also been down to him not needing an injection as we were already going to be at the hospital.
Once his blood was taken to be tested we all played in the playroom waiting for an hour for the results. The colour had certainly come back to Cian’s cheeks, so we were now thinking he may not have to stay in after all. And sure enough, it was shown he didn’t need a transfusion. The weather was lovely and it was not yet midday, so we decided to take ourselves, together with the packed lunches that Mummy Case had lovingly prepared to the Cardiff International White Water Centre ‘down the Bay’.
Although we couldn’t spend too long there as Cian would need his afternoon medication, the hour or so spent there was excellent. Even though we couldn’t take part in any of the activities, it really is a fantastic place just to go and spectate, which we have done as a family on quite a few occasions. Most people we talk to are not aware you can do that, but there are good facilities on site and benches around the course to see the more adventurous come down the rapids in their canoes and rafts. You can also go indoors and watch the indoor surfing (although nobody was doing that this time).
We got back home in the afternoon, played a few games, bathed the kids.. and prepared… again for what was going to be a weeks stay at the hospital.. with chemo 7 (out of 9) starting at some point, and the MRI scan!
After we dropped Dylan and Bethany at school, we packed the car and drove to the hospital. The big question was ‘when is Cian going to start his chemo?’ This week marks the start of Cian’s last cycle of chemo i.e. this will be the last time he will be given the drug Doxorubicin.
The decision was made that although his blood counts were improving, they were not good enough to start his chemo on the Monday. This was a tad frustrating because although on a normal week the potential was there to start it the next day, this week he would have to wait until Friday. The reasoning behind this is because the 2 doses of Doxorubicin has to be given over a 48 hour period, and starting this on the Tuesday would take us too close to the MRI scan; and as the chemo and the General Anaesthetic (needed for the MRI) are both potential stressors of the heart, having both close together presented an unnecessary risk increase.
However, we were able to make the most of our physio sessions. We had 2 on Monday including a walk around the Noah’s Ark garden.
Anne White, the play therapist from the charity Kids With Cancer, came to the house to play with Dylan and Bethany on Monday evening which again they thoroughly appreciated.
I was a little delayed arriving at the hospital on Tuesday as the ‘ramp guy’ arrived at the house to finish the ramps that he started on the previous week. I stayed on Tuesday night, which is not my usual night, but as we had the scan, mum and I negotiated a change in the duty rota. Uncle G was also able to change his usual visit day to accommodate the change.
On Wednesday the first task that mum and I had to do was to give blood samples. Together with a sample from Cian, they would be sent forward as part of the FACT study (Factors Associated with Childhood Tumours). It is crucial that as a family we play a part in trying to establish the cause of these awful tumours so we might benefit, but also that others can also. Although never a fun experience, giving the sample was painless enough, especially considering what Cian has had to endure, there would be no complaints whatsoever!
To brighten our mood we weren’t treated to our usual ward entertainment of Jasper, but to one of his alter-egos of Dr. Stavros Plopipantolos. As well as a unique style of medical practice, the Greek Doc also had a few magic tricks and balloon modelling skills to impress the patients (and the rest of us).
Thursday was the BIG DAY!! As you can imagine we had worked ourselves up quite a bit to this point. Although by looking at Cian and seeing how well his mobility has started to return, you could surmise that he was responding to the treatment, there was no way of knowing what was happening inside without an MRI scan, especially given the worrying recent symptoms Cian was experiencing.
It would have been nice to have had one sooner, but we were told that the radiotherapy would have irritated the brain and also caused some swelling on the brain and spine, which would have affected any interpretation.
First of all, Cian had to be put to sleep as the scan was likely to take between an hour to an hour-and-a-half. He hadn’t need general anaesthetic since his radiotherapy finished in mid-February, but it was reassuring that the anaesthetist team consisted of Colin (by his own request) and Dr. Chris, both of whom Cian knew very well from his time back and forth to Velindre.
Cian was amazing at being given the ‘sleepy medicine’, so mum and I used the next hour to get some breakfast and contemplate the results. We were told that they would try to get the results to us as soon as possible, but there was a chance that we may have to wait until after the Bank Holiday weekend.
Cian woke up in the recovery room in quite a grumpy mood, which is par for the course, but he was feeling much better by the time we got back to the ward.
Within a couple of hours, we were given the news that we had dreamed of…. There is no sign of the disease on the brain or spine (around or above the tumour site)! There are some anomalies below the tumour site, but nothing that is overly concerning the consultants at this point.
As you can imagine, such news is such a relief and release. Cian continues to defy expectations and everyone involved in his care are pleasantly surprised at how well Cian has responded.
However, we cannot rest on our laurels as we still need to finish the course of chemotherapy as prescribed in his protocol.
Thursday afternoon was a special treat, as we had a film day planned. The children designed and made their own pizzas and together with crisps and popcorn donated by some of the staff we sat and watched a couple of films.
This was something that I proposed a couple of weeks ago, so I agreed to bring in my projector and some films. Not only did the children enjoy the movies, but they also managed to eat quite a lot of the treats on offer, which is more and above what their appetite would usually allow them.
Today (Friday) marks the start of the chemo. It does mean that the start of our Bank Holiday weekend would be spent in the hospital, but providing the chemo was put up as early as possible as we requested, it would ensure that we got out on Sunday at a reasonable time. Frustratingly due to Cian needing a heart scan which had not previously considered, the drugs were not put up until mid-afternoon.
Cian is now fast asleep, much earlier than usual, which has enable me to finally finish this blog. Hope you all have a fantastic Bank Holiday weekend!!
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
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
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
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.
I'm going to keep this blog short as I am in the process of travelling to London on a coach.
This journey is not one of leisure, but of real purpose.
Following my letter to Huw Irranca-Davies (now former MP of Ogmore Constituency) we were able to secure a Parliamentary Debate on Brain Tumour research.
Although Huw was unable to represent Cian at the debate, he did manage to secure the services of Nick Smith, the MP of Blaenau Gwent to speak on his behalf.
This is an extremely important event as the report written following the successful e-petition clearly demonstrated that Brain Tumour research was not getting a fair proportion of funding despite it being one of the biggest killers of people under 40; and those fortunate to survive are faced with a life full of significant challenges due to the harshness of existing treatments.
The debate will be streamed live from the Parliament.tv website from 16.30 this afternoon.
Depending on reporting restrictions I might be able to post social media updates.
More importantly Cian has had a very positive weekend which saw him home from Friday to the Monday.
Cian's weekend was given a bigger boost when a package arrived from Manchester containing a signed top and get well card from Charlie Oliver who is a rising star in the Man City Academy team, who Cian and I have been following on their journey to the upcoming Youth Cup Final.
Cian made a Good Luck card for the team!
Even a trip to the shops which would usually bring nothing but groans from the kids was a treat for Cian who hadn't been to Tesco for 5 months! There he got an ID photo taken for his disability blue badge application.. And the photo was taken by one of the mums up the school, which made the experience more pleasant.
Cian is now back in hospital for his physiotherapy and to monitor him before another dose of the chemotherapy drug Vincristine tomorrow.
When Friday arrived Cian was super excited. He was aware that this weekend had 2 great
events to look forward to. These were
the Charity Rugby match at Llanharan RFC (followed by an auction and
entertainment); and a Super Hero Funday at the Welfare Hall organised by the
staff at the Drop In Centre.
Although it wasn’t planned this way, Cian was as well as we
have seen him for quite a few weeks, mainly due to him not having the chemo he
was due this week. This was as a result
of his blood levels not quite reaching the required figures.
As well as a lively physio session, Friday involved Cian
spending most of the time in the playroom playing a variety of games with other
patients and their parents. You get an
idea of how determined these children are to overcome their different cancers
by how competitive they are! Uno is
certainly the ward favourite.
We had been primed all morning for Cian to be discharged so
we could get ready for the rugby, but then came some bad news…. Cian would need
to remain in hospital for a blood transfusion and then stay overnight for a
follow-up blood test on Saturday morning.
I decided to negotiate a compromise that following Cian’s
transfusion, we could take Cian out for the rugby and return him for 9pm. Thankfully it was agreed and eventually we
were on our way.
Llanharan Past v Present did not disappoint. It was amazing to see so many people in
attendance to support Cian; and the rugby was a great spectacle. The tackling was fierce; there was plenty of
running rugby with some impressive offloads; the fitness levels were high; and
the sportsmanship was amazing.
I can’t begin to thank all the players that turned out on
the night, and I hope none of them had any lasting damage.
Cian managed to see a few friends that he hadn’t seen since
he was last in school in November, which gave him a huge lift. He also got an opportunity to thank everyone
on the PA system, which he thoroughly.
As promised, the outgoing Ogmore MP (and Assembly Member
candidate) Huw Irranca-Davies attended the match accompanied by Chris Elmore,
who is the labour candidate for the vacant seat in parliament. Cian and I got to briefly meet them where we
discussed the arrangements that had been made for Blaenau Gwent MP, Nick Smith
to represent Cian at the Parliamentary Debate on Brain Tumour research that has
been scheduled for April 18th.
We were gutted that at the conclusion of the game, which was
won by the present team after a late surge, we had to leave for the hospital
while everyone else were treated to an auction and entertainment in the
clubhouse. As soon as Cian was put into
his bed he fell straight to sleep.
Special thanks must go to Grant Hall and Wayne Jervis who
organised the majority of the proceedings, which in total raised over
£4,000. That is an absolutely incredible
amount and we are overwhelmingly grateful.
The kids were also treated to Ospreys goody bags.
We are hoping to make the garden more accessible to Cian so
he can enjoy some outdoor time in the summer on completion of his treatment.
Thankfully the blood tests on the Saturday morning were fine
and we were able to make it home for 10.30am.
We got Cian into his Power Rangers costume while Bethany
dressed as Princess Anna (Frozen) for the Super Hero Fun Day. Dylan is a little too old and too cool to be
dressing up now.
The Welfare Hall was buzzing with activity, with a variety
of different stalls and activities to choose from.
Bethany enjoyed having a glitter tattoo, Dylan had a go at
the Sumo Wrestling and Cian had a roll around in the ball pit. I think my favourite part was the chocolate
orange cake that was on sale.
The event raised over £400!
What was also great is that Cian got to see all the people that would
usually look after him during holiday club in the drop-in centre and other
Later in the afternoon we watched the Grand National. Last year the family saw 3 of our 5 horses in
the first 4… this year we were not so fortunate; but given that our method of
choosing horses is not very scientific then we can’t be too surprised. Hopefully you guys had a bit more luck!
Sunday was mainly a chillout day based on the exertions of
the previous 2 days, and most of the time was spent playing games. Although we were not due to go back into hospital
until the Monday morning disaster struck early in the afternoon on Sunday as
Cian vomited and brought up his NG tube.
We all made our way into the hospital, as Dylan and Bethany had an inset
day on Monday.
Cian has been vomiting regularly at the moment. It’s difficult to understand why, as he
should not be feeling the after effects of chemo. It’s probably a mixture of being on a
different feed and not being as active as he could be.
Monday has been another good day. Cian tolerated an hour of being on his feet
in physiotherapy playing games with Dylan and Bethany. There is no doubt that the strength is
continuing to build in his legs. We
expect progress to dip when he starts chemo again… but that is something we
have been told at every stage, with very little in terms of any
deterioration. Cian’s blood results have
shown that he can finally commence round 6 (of 9) chemo tomorrow
afternoon. It consists of 3 different drugs
given over 2 days. Cian has had a bit of
fun in the playroom on the video games and Uno.
Monday night we have watched a bit of tele consisting of Soapbox
Racing, Tom and Jerry and Wrestling. He
seems nice and settled and I’m hoping for everything to go smoothly tomorrow.
Cian slept extremely well on Monday night considering there
was quite a lot of disruption around the ward.
Cian is so used to having his overnight ‘obs’ and other distractions he
can sleep through these without fully waking or considering. It is a little different for me or mum, as
although Cian is in no imminent danger, there is still a heightened sense of
awareness which results in us jumping out of bed at any little noise.
Tuesday started quite relaxed as we prepared for chemo in
the afternoon. As chemotherapy means
that Cian is attached to a variety of different pumps, it was important to have
a good chemo session in the morning. So
we made our way down to the dolphin zone with a number of new games that had
been donated to the ward. During the
session it was noticeable to the physios that Cian tolerance in standing; his
posture; his movement; and his strength had improved. Without Cian even noticing, the physio
offering support was giving more and more control over to him.
This resulted in the physios deciding to try to get Cian to
WALK with minimal support. So with a physio
on each arm, Cian took his first independent steps since November. As you can imagine it was incredibly
emotional to see. Once we got Cian back
to the ward, mum and I were given the opportunity to walk with Cian. As soon as he held our hands, he started
singing “We’re Off to See the Wizard” from the Wizard of Oz. It’s a song that we always walked to before
he was ill when he held both our hands.
And it did feel as if we had been to see the Wizard of Oz and our wish had been granted! Although just with every other major
milestone we have reached, Cian almost dismissed it. When asked by the nurses “what did you do in
physio today?”, his response was “don’t know” or “play games”.
Before I left in the afternoon, Cian was hooked up to his
chemo. It’s a week later than scheduled,
but what was important is that he has been well enough during that time to
enjoy the break.
Tuesday evening was spent with me taking Dylan and Bethany
to rugby training. It took place on the
main field which was a treat for all involved.
I counted over 80 children, so it was like a little festival of rugby
and was amazing to watch from the stands.
I also got a chance to meet Wayne (who organised the charity
game) properly. I asked how the auction
and entertainment went, and the feedback was amazing, with some people staying “quite
late”. I asked him for a list of people
who donated auction prizes and those who contributed; but he was adamant that
there were so many generous people who have been involved that it would be
wrong to single out anyone in particular.
I totally agree.
Cian had a comfortable night with mum on Tuesday.
Although Cian has still been hooked up to his various pumps on Wednesday,
we have managed more walking as the physios hid Cian’s soft toys around the
ward and he had to go and hunt for them.
So with his pump stand in tow, he found his cuddly friends. It was amazing to see the amount of energy he
We then played Snakes and Ladders before the walk back to
We have had our usual Wednesday night visit from uncle G and
playing board games with Caroline (Latch support worker) and we are now
settling down and watching the FA Cup replay between West Ham and Manchester
He has also completed his chemo for this week, and seems to have handled all the drugs very well.
This is just a quick update following yesterday’s blog.
Cian had a fantastic night sleep and woke in a very
energetic mood. Unfortunately though,
the overnight blood test results showed that Cian’s platelet levels had deteriorated
so therefore not only had chemo been postponed for the day, but it was decided
that it would be best to give Cian platelets to provide a boost and then to
reassess him next week.
This does mean that we will have Cian home for the weekend,
and providing he keeps well then there is a chance he can make an appearance at
the events organised… although we will need to make further trips into the
hospital for further tests.
Cian had a very positive day in physio. The morning session involved Cian moving
around a plinth whilst playing board games.
This demonstrated that he has gained even more strength and control in
his legs. This afternoon, Kimberley the
play specialist, made a treasure hunt around the Rainbow Ward. This is because although Cian can use his
walking frame with some limited assistance, he does need some motivation and
It proved to be a huge success as ‘Special Agent Cian Case’
ably assisted by his friend on the ward Eva, followed all the clues hidden at
various locations around the ward, to the treasure at the end (an Easter Egg
and colouring pencils).
This was definitely the most controlled walking that Cian
had managed thus far, and was a great cause for future optimism.
I thought I would also update you on the letter that I sent
my local MP (Huw Irranca-Davies) describing Cian’s condition and asking for
support in requesting a Parliamentary Debate for Brain Tumour Research
following a successful e-petition.
We have heard from his office that Nick Smith, Member of
Parliament for Blaenau Gwent will represent us.
We are just waiting to hear confirmation from his office.
I am hoping to go to London and attend the debate, but I
will need to ensure Cian is well enough.
Mr Irranca-Davies will be attending the charity rugby match
tomorrow, so I am hoping that it will demonstrate the strength of feeling and
support that has been shown to Cian, and how important these issues are.
This week has been challenging in lots of different ways.
Firstly when we phoned the ward on Monday morning to confirm
Cian’s arrival, it was explained that the ward was full and he may have to wait
for a bed.
This was to do with an influx of patients. I have previously mentioned that a lot of the
patients are able to spend long periods at home and only need to come in if
they are receiving treatment (i.e. chemotherapy) or there have been complications
(e.g. illness or infection). As we are
still going through a change in the season, this often brings coughs, colds and
Anyway we came in as normal as Cian would need to have his
physio, and have blood taken to assess for his imminent next round of
chemotherapy. We could then wait for a
bed to hopefully become available.
It was agreed at our last planning meeting that due to the
intensity of Cian’s chemotherapy and physiotherapy that he should be
accommodated on Rainbow Ward from Monday to a Friday, with the possibility of
home visits on a weekend.
Due to limited space we spent most of Monday in the
playroom, where Cian met Morgan. Morgan
has been receiving treatment for a while but has spent most of that time at
home so they had never previously met.
They both share the same age and interests so got on very well
together. It is always nice when Cian
makes a new friend. It also helps as
Morgan motivated and distracted Cian during his afternoon physio session (Cian
is back to receiving 2 sessions a day as he is well enough). This consisted standing in his frame for a
long period to build the muscles and posture.
We were allocated a room in the afternoon, but we ended up
sharing. This can be quite challenging
as although it’s sometimes good to have the company, it does make things a
little more chaotic, especially at bedtime.
Cian and I were distracted as there was football on the TV
in the form of the Youth Cup Semi Final between Arsenal and Manchester
City. The son of a former colleague of
mine (Charlie Oliver) was on the City team so we were supporting them for the
evening. It proved to be positive as Charlie
and the City team have made it through to the final. Cian was made even more excited when he
received a message from Charlie and his mum via Facebook!
Cian had a good night on the Monday and slept peacefully,
but we knew he wasn’t going to start chemo until at least the Wednesday as his
blood results showed that his body still needed an extra bit of recovery time…
so Tuesday was all about Physio and play.
Although the test results were saying Cian needed to recover, his demeanour
was saying different. It is the most
energetic I have seen Cian in a few weeks.
His physio session was positive and full of fun and hard work. He has started to tolerate a lot more in his
walking frame and the physiotherapists are getting to the point where Cian can
use the frame with just parental supervision!
Also Cian spent more time playing with Morgan, and both were
in the playroom when the ward received a new batch of Chemo Ducks courtesy of
Tony from the Dreams & Wishes Charity.
For those who may have missed an earlier post, Chemo Duck is an
excellent tool to demonstrate to children some of the treatment methods, while
also being a cuddly friend. Although it
is an American idea, Dreams & Wishes provide them to the children on
Although both Cian and Morgan have their Chemo Ducks already
they agreed to have photos taken with the new ones for the charity to promote
on their social media channels.
I left the ward early on the Tuesday afternoon to pick up
Dylan and Bethany from their club. Cian
and mum had a good night on the ward.
Wednesday has been mixed although mostly positive… Let’s get
the negative out of the way first of all.
Cian’s blood results still show that his platelet levels are
not where they should be to receive chemo, therefore the earliest to start the 2
day course is Thursday. Platelets can be
given in the form of a transfusion, but the decision is that we wait for his
body to recover naturally otherwise his bone marrow could become lazy. This is negative because, it lessens the
chances of Cian getting home on Friday… but there is still a chance!
Also in the afternoon, Cian was sick and therefore needed a
new NG tube… but on the positive side, he was much better accepting the new
tube than he has been previously.
Now the positives… Cian’s energy levels have been quite high
and he has again enjoyed himself and worked hard during his physio
sessions. He has been in a good mood
chuckling and singing. He was visited by
Jasper, who had us all laughing. Cian
also made an apology card for him as apparently Cian wasn’t in the best of
moods during his last visit (while I was away with Dylan and Bethany). The card was very well received.
He also had visits from the anaesthetists (Colin and Tasha)
who looked after him during his radiotherapy treatment. They even brought down a selection of hats
that we both tried out.
Then in the evening uncle G came in and we played a
selection of board games which kept us busy for a few hours. We were also able to wish G a happy birthday
and give him his cards.
Then to top it off, Cian and I cuddled in and watched a bit
of Red Bull Soapbox Racing which we thoroughly enjoyed. We just need a good night’s sleep tonight and
positive blood tests in the morning which will trigger the start of his chemo!
Hopefully we can Cian home this weekend and enjoy himself,
before the effects of the chemo kick in next week!
Apologies that it has taken me a full week to post an update
to the last blog.
Now that we have said goodbye to March, it certainly feels
like Spring has arrived, and I am hoping that the season of growth and new life
will be promising for Cian.
Cian has spent all last week in hospital, but he has got a
little better and a little stronger each day.
As I was on holiday in West Wales with his brother and
sister, we decided to give Cian a treat and organised for mascots to visit the
ward on Easter Monday and spread a little bit of cheer.
Little AJ’s who were asked to surprise Cian with mascots on
his birthday by the Ethan Perkins Trust Charity, had agreed to provide the
mascots free of charge so all I had to do is make the arrangements with the
ward and to pay for some treats to be dished out to all the patients who had to
spend their Easter in Noah’s Ark.
They sent a Power Ranger, Princess Aurora, Bing and Chase.
Although we were not there to see Cian’s face (or the other
children that benefited from the visit), we were able to catch up with photos
posted on Facebook.
We got back on Thursday, a day early, in the hope that Cian
would be allowed home on the Friday.
Unfortunately, due to a little fluctuations in Cian’s blood
levels it was decided to keep Cian in on Friday night with a decision to go
home to be made on Saturday morning.
During Friday Cian got to choose a new patchwork quilt that
were made by volunteers of the Project Linus.
It is an amazing creation, and Cian has certainly taken a shine to
Cian was also the first person on
the ward to get a sneak peek at the impressive patchwork mosaic that the
project have created. This has been
framed and will adorn the corridor just outside the ward in the near future.
So I was on Cian duty Thursday and Friday nights. It sounds a little weird but I actually
enjoyed getting back to what I now regard as normal. I slept better at the hospital than I did at
the caravan; not because the caravan was not comfortable, but because I am now
used to being a carer; and the routine of administering medicines, organising
physio, ensuring Cian is having the right amount of feed at the right time is
Cian was given permission to leave on Saturday and mum took
him home in the car, while I took Dylan and Bethany to watch Cardiff City
play. Llanharan Primary School were
again allocated free tickets and it is a welcome distraction for them. The only negative is that Cian would have
loved to have gone, but again his positive attitude and understanding shone
through. When he does have an
opportunity to do some of the things he is missing out on it will be amazing!
While at home Cian enjoys doing the things he enjoys best
like playing video games, and with his toys, and arguing with his siblings.
Cian will be transported back to the ward sometime on Monday
morning. It is still the school holidays
so Dylan and Bethany will be attending clubs to keep them occupied. Although there is lots to do on the ward,
there is not enough to keep them adequately entertained, and they wouldn’t have
the attention from me or their mum that they deserve. Also, we have now given up the accommodation
we were allocated with LATCH due to it being very busy at the moment, so there
is nowhere for us to spend the night at the hospital.
The clubs also provide them with a routine.
I’m hoping to provide more regular updates this week as we
prepare for the start of chemo round 6 (out of 9).
Back in October, before Cian fell ill, we decided to book a family holiday for Easter.
We chose 7 days at Quay West, the Haven resort at New Quay, West Wales. We have stayed at quite a few Haven sites,and Quay West is certainly up there as one of our favourites. The location is stunning and the kids love the facilities.
All 3 of them enjoy the evening entertainment, but Cian more than Dylan and Bethany. Hes never been afraid to get involved in the games and party dances.
So when Cian was diagnosed we decided not to cancel the holiday. We hoped Cian would be well enough to travel, but when he woke at home on Good Friday it was obvious that he wasn't.
He was not keeping anything down and was pale. We phoned the hospital who told us bring him in to be checked out.
He was readmitted and was allocated room 5.. A new room for us. Its smaller than our previous room which might be problematic when it comes to his physio, but we will work through it.
It was so heartbreaking to leave Cian and mum at the hospital, but it was important to give Dylan and Bethany the break they also deserve. Also the priority is to get Cian feeling well again, and he is in the right place for that to happen.
The original plan was to spend the weekend at Quay West as a family, bring mum and Cian back to hospital on the Monday and head back to the coast with Dylan and Bethany for the rest of the week. Now it looks likely that it will just the 3 of us for the entire break.
When we reached our destination we had a quick check to see how Cian was. He was quite a bit better than earlier thank to being given fluids, and rather than being justifiably disappointed and jealous of not being able to go on holiday himself, he had the grace to wish his brother and sister a great holiday!
He continues to blow me away with his outlook and positivity.
I won't turn this blog into a holiday review, just to let you we are making the most of the situation.
Although we are a couple of hours away, Cian and mum are never very far away from our thoughts and we have regular contact through texts and calls.
Cian has had a few family visitors, as well as Laura and Kylie, play assistants from the other wards who gave Cian an Easter tattoo on his arm.
He has been spoiled by lots of chocolate eggs and a cuddly bunny he has named moon bunny. Just like at Christmas, lots of people and organisations donate to the hospital, which is a fantastic gesture.
He is still a bit up and down with bouts of sickness. He has received some blood this afternoon which will hopefully perk him up.