We are in a very similar position to the last blog.
We are still stuck in isolation, because even though they can't find any infections via their multitude of tests, Cian's sporadic symptoms of sickness, diarrhoea and tummy pain suggest otherwise. So we are in a situation where we are deemed guilty until proved innocent.
The main issue is that with Cian restricted to a small hospital cubicle, it is very difficult to get him active; and the more time he spends in bed the more lethargic he is, and he is becoming more reluctant to take part in physiotherapy as there is only so much anyone can do to motivate him.
Plus he is attached to numerous tubes and wires that further restricts his movement.
One of the major tests this week was a bladder scan to ensure that he was emptying his bladder. Thankfully this was ok, as the thought of having to return to using a catheter was not appealing. But at least we got to leave the room to attend the radiology department, even if only for half an hour.
Cian's TPN feeds are progressing well, and he continues to be putting on weight and is now over half a kilogram heavier than when he started it. The decision has been made that this will continue, which again means that Cian has no prospect of going home this coming weekend.
This is made a little more disappointing as we were allocated circus tickets on Friday night from Kids Cancer Charity, but Cian is still very understanding.
The other frustration, is that the consultants are a little reluctant to start Cian's last chemotherapy until he is deemed 'well enough'.
The problem is that measuring Cian's wellness is quite subjective, and this can change hourly. I put it down to lethargy and boredom of being in the same room.
All that said, I trust the consultants totally; and although it would be tempting to get the last chemo 'over and done with', we wouldn't want to rush the process and possibly cause further setbacks further on.
The one thing that Cian has enjoyed this week in Loopin' Louie. It is a game that he had for Christmas but has only recently got around to playing it. It has turned into a firm favourite on the ward amongst the physiotherapists, teachers and play therapists.
I'm hoping to give you all some more positive news on Friday.
It was a great opportunity to see the players receive deserved appreciation and recognition in what was a very difficult season.
I was also presented with a cheque of £4,000 that was raised at the Past v Present game a few weeks ago. It gave me the platform to thank everyone at the club that have rallied around Cian, and appropriately this money will go towards continued rehabilitation for his mobility. We are consulting with physiotherapists on what Cian can do to boost his progress.
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.
To say that as a family we are incredibly frustrated, is a huge understatement.
We are just one more treatment away from Cian finishing his prescribed protocol... but we have reached a point where we are experiencing one step forward and two steps back.
We were hoping to get Cian home for Bank Holiday weekend, and although we had a stuttering start due to him feeling the after effects of chemo on the Friday, we got the all clear to go home on Saturday after a blood transfusion.
However the doctors warned us that due to Cian being neutropenic his trip home may be shortlived.
The weather was lovely so we were determined to enjoy it as much as we could. But, a part of Cian's treatment means that we have to avoid direct sunlight and harmful UV rays as much as possible.
To combat this we have bought a gazebo with some of the money donated to go in the garden so Cian (and the other kids) can play outside safely.
Everything was going amazingly well. Sunday, Cian was in good spirits and tolerating the medicines, water and feed going down his NG Tube. This was vitally important, as most of Cian's recent issues have been related to hydration.
Also Cian was not getting as upset receiving his daily GCSF injections as he once did.
Unfortunately, after a sudden bout of diarrhoea on Monday morning, Cian 'spiked' a temperature and had to be taken straight back into hospital... a day earlier than anticipated.
When Cian and I arrived at the hospital it was obvious that he needed medical assistance. He was given antibiotics and fluids which within a couple of hours he was much more alert.
We had a reasonably good night at the hospital, although Cian's erratic bowel movements had an episode at half 4 in the morning. Cian managed to get back to sleep a lot quicker than I was able to.
I was glad he was able to doze off, as Tuesday was going to be busy.
We first had an introductory visit from Mags, who is going to be Cian's community physiotheapist.
It is a big leap for Cian who has got to learn to know and trust Ann and the team of physios at Noah's Ark.
But Mags was lovely and one of her first tasks was to read these blogs to understand what Cian has gone through and the progress he has made in the 6 months since he was first admitted.
What also concerned us was that the ward was extremely busy, and it was intimated that Cian could be moved to another part of the hospital to make room for those children needing chemotherapy.
As you can imagine, that situation would not be ideal, as Cian has an infection and in isolation; he is neutropenic; he has established trust with the nurses and staff on rainbow ward; he is comfortable in the surroundings. A change in ward where there are children with conditions that could cause significant problems to Cian's treatment and recovery poses a risk that as parents we have no option than to challenge.
Ultimately the decision is out of our hands, but we hope common sense will prevail. We do not envy the people having to make these difficult decisions, but we need to fight the corner for Cian who is too young and weak to do so himself.
A review will take place tomorrow to see whether a move is necessary.
Yet another concern is Cian's weight. He is now down to just over 14kg. This demonstrates that Cian has lost between fifth and a quarter of his body weight since he was first admitted.
This has passed a threshold which triggers another intervention called Total Parenteral Nutrition (TPN). This is where 'food' is administered and absorbed directly into the bloodstream rather than the stomach i.e. 'food' will be given via his wiggly (Hickman Line).
This was something we hoped to avoid, especially as we have gotten close to the end of treatment; but we understand that his weight is now becoming critical. We have also had reassurances from other parents on the ward that their children have thrived using this technique.
The frustrating part is that we are not able to feed Cian using this method, so the likelihood of him getting home as often as we would all like has diminished further.
Even with all this negativity in Cian's final few weeks of treatment, we are reminded of children and their families on the ward who are currently facing even tougher challenges, and our thoughts, prayers and solidarity are with them also x
As you can imagine, last weekend for Cian was a bit boring.
He was stuck in the hospital in isolation, and due to the shingles we couldn't risk bringing Dylan and Bethany in.
You might be interested to learn (as we were), that shingles can't be passed from one person to another... but if someone who has never had chicken pox comes into direct contact with the blisters associated with shingles; then they can contract chicken pox.
We are a little unsure if Bethany has ever had chicken pox as she only came out in one spot when we thought she had it! So, the safest thing was to keep them apart, which is never nice for any of us.
So as we do during the week, we alternated staying at hospital and home.
On Saturday night was the White Collar Boxing. Although I couldn't make it I kept up to date with everything on Facebook. It truly looked like an awesome event. I am very grateful to the organisers, the fighters and attended!
The start of this week has not improved too much for Cian.
Although the shingles are not causing him any real problems or discomfort, the effects of last week's chemo are now kicking in with sickness and diarrheoa. This is on top of his loss of appetite. So we are now struggling to ensure that he has sufficient feeds and fluids. If that doesn't improved then we risk him having to stay in for a 2nd consecutive weekend.. which we hope to avoid, especially as its a Bank Holiday one!
There have been some plus points, as Cian continues to make gradual progress in his physio. The strength in his lower body is noticably improving.
This session was being assessed by Noah's Ark to see how beneficial it is to patients.
As parents we think that these sessions have a very positive impact on Cian, because as well as emotional well-being, it also provides an additional form of physiotherapy and has an element of education.
We firmly believe that treatment (especially for children) should include interventions of this kind (as well as all the medical inputs) to aid a speedier and more pleasant recovery.
We would be interested to know others constructive views so that they could be fed back.
The video I created has been published as Rainbowfish which is the charity/trust that we would look to establish once Cian has completed his treatment.
I thought I would start to raise it's awareness now.
We also had a visit from Patch the dog, who is the mascot of LATCH. He was distributing 'Brian Toys', which had been donated by Confused.com. And we were also treated to Jasper today courtesy of Dreams & Wishes.
I am really pleased to announce that Jasper has agreed to be host; compere; master of ceremonies; auctioneer; entertainer and more at our Charity Ball in October!
There has already been massive interest, and we will be looking to finalise attendance in the next couple of weeks.
I hope to write a dedicated fundraising blog to keep everyone updated on what has been raised and our latest thoughts on how some of the money will be spent... although it is still very difficult (even at this stage) to understand what Cian's ongoing needs will be, as things are changing regularly.
Although Cian has been in isolation for most of this week due to the C
Difficile infection last week, he has had a pretty good time where he
had room visits from Rubicon Dance who
had a bit of a boogie with him; a very dramatic story reading from
Readathon; and a cool owl balloon hat courtesy of Jasper.
Yesterday it was confirmed that there was no more of the C Diff in
Cian's system and he was allowed out of isolation just in time to hear a
reading from Wendy Hobbs, the author of The Spell of Pencliff, which is
the first of a series of books relating to Claudia Quash.
Unfortunately shortly after that a rash was spotted on Cian's back which
has now been confirmed as shingles. This has meant that Cian was put
straight back into isolation and is no longer able to go home this
On the plus side, the shingles hasn't prevented Cian receiving his chemo.
That has now finished and he only has 1 more round to go!! That is likely to take place in 2 or 3 weeks time.
I will no longer be attending the White Collar Boxing in Cowbridge
tomorrow as getting Cian better is the priority whilst making sure Dylan
and Bethany's weekend isn't impacted too much by the new setback. I'd
like to wish all the fighters the very best of luck and thank the
organisers ASP so much for organising what promises to be an amazing
event and supporting both Cian and Ellie!!
Whatever you are all doing this weekend, we hope it's a good one!
Although Cian was fighting an infection for most of last week, by Friday Cian was much better. so once we knew Cian wouldn't be having chemo, we were confident that Cian would be given the green light to go home. Although it would be great if we could just pack up and jump into the car, it is never that simple.
Cian needed to be reviewed by a couple of doctors, and have all his 'weekend medication' signed off by the pharmacists before escaping!
We managed to get away before 1pm, Cian was in a good mood, and the sun was shining so we were off to a good start.
The first thing to do when we get home is organise ourselves. Mum does a lot of the hard work like unpacking the bags and arranging medications and feeds, which just leaves me to keep Cian entertained.
When I realised that some of the teachers from Cian's school had taken their class over the park by our house as a Friday afternoon treat, I took Cian over for 10 minutes.
A little later on we took Cian up the school to pick up Dylan and Bethany.
On Saturday we had to make an unscheduled stop at the hospital to pick up some medical supplies so we decided to make the most of our venture to Cardiff on a nice sunny day, by stopping off at the Cardiff International White Water Centre (a regular haunt for us at the moment) and also Toys 'r' Us which is just a stones throw away.
Bethany had her birthday money to spend, and we also wanted to buy some toys and games for the garden. These would be used to entice Cian outside and also provide our own brand of physio.
So later in the afternoon we were able to get in the garden and play games such as tennis and football. We have had to modify the way we all play to be inclusive of Cian, but Dylan and Bethany do not mind at all.
On Sunday we went and did a bit of local shopping and played more outside. It was nice after a week of isolation to have that extra bit of freedom!
The weekend went very quick, but was by far the most enjoyable one we have had. Cian was tolerating all his feeds, medication and water intake. This meant that we didn't have to be overly concerned that he would become too dehydrated or be sick. This translated into us being more relaxed and enjoying the time together. Over the weekend, Cian's appetite was slowly starting to return which is a huge encouragement.
We were back into hospital on Monday morning. We thought that as Cian's antibiotics for his infection had finished and he was no longer symptomatic, he would no longer be in isolation. Unfortunately though, there are still a couple of boxes to tick before we are let out.
Therefore, before we made ourselves too comfortable back on the ward, we had a session of physio outside in the hospital grounds.
Cian tolerated so much time on his feet and it was incredible to witness even more progress. On the decking in the garden, with the close supervision of Ann the physio, Cian tentatively took his first independent steps.
What an amazing feeling to see him walk from one person to another, just as you do with a toddler taking their first steps.
It is fantastic when things go according to plan.
At the beginning of this journey we were unable to look beyond getting through the next day or two; when we got to Cian's radiotherapy we taking each week as it came; then while Cian has been undergoing chemotherapy there has been a fortnightly focus as each cycle came and went; now we are nearing the end of Cian's protocol we can allow ourselves to consider more longer term.
Although this is amazing, it doesn't come without its own challenges and worries. We attended a meeting on Monday afternoon with all the major stakeholders involved with Cian's care where we were looking at a plan to ready everyone for his transition back to the community over the coming weeks.
We will be spending more and more time at home; Cian will be slowly weaned off some of his medications (where appropriate); more liaison will be made with the school to ensure everything is in place for Cian to return in the future. There is so much to consider and prepare for, and even when the treatment is over, we have months and even years of adjustments to plan for.
Cian will be starting his 8th round of chemo this week, but it's now not likely to start until Wednesday when we hope his blood counts have improved.
Last week ended on a little bit of a low. I mentioned Cian was in isolation while the
hospital labs performed a couple of tests, and unfortunately they came back
showing that Cian had picked up an infection.... and a nasty one at that!
However much we try to protect Cian from bugs, we know it is
very likely that he is going to pick up a few nasty things along his journey.
So on Friday he was put straight on a 10 day course of
Not only that, but the blood transfusion that we were hoping
would take place first thing in the morning didn’t get erected until past 6 o’clock. As a transfusion takes in the region of 2
hours it was decided that Cian (and me) would spend another night at the
hospital and delay the start of our weekend.
This was sort of a blessing in disguise as it meant that we
could also focus on ensuring that the infection was as much under control as we
So the Saturday was spent waiting for a doctor to come and
review Cian to be given the green light to go home. Again, we were hoping that this would be
early as Bethany was having a few friends over for a small pamper party.
It was a little frustrating as the doctor didn’t see us
until after 3pm when the party was already in full swing, so we had to get a
At least we caught the tail-end of the party, which cheered
Cian up a bit.
We didn’t get up to too much on the weekend with Cian home,
as we had to be careful not to make his situation any worse; but we made the
most of just spending some time together playing games.
Monday it was back to the hospital knowing full well that we
would be put straight into isolation.
Cian was still feeling the effects of the infection and it was clear
that it was taking a lot out of him.
Although we were trying to replace as much lost fluids as we
could, we were always on a losing battle and when he was weighed it showed that
he had lost a half a kilogram. We do
feel guilty as we were given the responsibility of taking care of him at home
and there are occasions that we are bringing him in worse than when he was
The doctors and nurses were quick to point out that the
infection would have caused this whether he was at home or at hospital.
He was quickly attached to extra fluids to try to counter
Cian and I stayed at the hospital and had a McDonalds (Cian
still only nibbles at his food), while Dylan and Bethany were at home having a
visit from Anne the play therapist.
First thing on Tuesday Cian had a platelet transfusion. This picked Cian up a little bit and it
seemed that his antibiotics were also starting to kick in.
Wednesday saw our usual visitors of Jasper and Uncle G. Both put a huge smile of Cian’s face.
Not so amusing was my decision to watch the Sunderland v
Everton game on Cian’s iPad. He was
dressed in his Everton pyjamas, but had fortunately fallen asleep by half time when
Everton were already well beaten.
Thursday (today) Cian has had another hearing test that
demonstrated that (to date) his radiotherapy and chemotherapy has not adversely
affected his hearing too much (if at all).
This again is very positive news.
Although his earliest date for his next chemo was tomorrow
(Friday), the consultants have decided to give Cian a full weekend at home and
assess him again on Monday. This chemo
will be number 8 (out of 9).
So barring any major delays we should have Cian home at a
reasonable time tomorrow.
Physio this week was a little awkward, as we were confined
to a relatively small room, but Cian had some fun playing with his wrestlers
and also some fun breathing exercises to widen his air ways.
This involved blowing bubbles into foamy water. Given the win by West Ham (the team of most
of his maternal family) over Man United on Thursday.. it showed where his
loyalty for that particular game lay!
Cian also had some one-on-one time with Kimberley the play
specialist and by his own request did some crafty things. They also had a play with some funny videos
that I hope to upload soon... watch this space!
I ended the last blog (last Friday) with Cian just starting
This particular chemo cycle involves Cian being ‘hooked up’
to the pump for 48 hours while the drug is fed into his bloodstream at an
incredibly slow pace.
Some of the drugs are very quickly administered, but this
one (using Cian’s specific protocol) is a little tedious.
It frustratingly means that Cian can’t really go anywhere or
On Saturday we had a group visit from Aunty Cathy (my sis);
Andrew & Jessica (my children from a previous relationship); and Jessica’s
children Skylah and Alayna (my granddaughters).
This is the first time we have got to see Alayna, who was only a couple
of weeks old, and Cian thoroughly enjoyed playing with Skylah.
Saturday afternoon I took Dylan to the Principality Stadium
to watch a rugby double-header, known as Judgement Day while Cian watched with
mum on the TV. Bethany stayed with her
grandparents and enjoyed an early birthday celebration as she turns 7 during
We used the LATCH accommodation in the night.
Sunday was mainly a case of waiting until 3pm and being
given the go-ahead to take Cian home, not only for the rest of the Bank Holiday
weekend, but until the Wednesday morning.
On Monday we had a
day at home and were visited by the kids aunty Sarah (mums sister) and her
children Jack and Thomas. So the kids
basically amused themselves for most of the day, which is really good to see.
I did take Cian out for an hour to look at a possible new
family vehicle. We need something with a
sliding door as getting Cian to and from his wheelchair into a car would be
much better... especially when kerbside or car parking space is at a minimum.
As Cian wasn’t due back into hospital until Wednesday and he
had been relatively well (although he had been a little sick, a bit constipated
and not eating or drinking much) we decided with his school that it would be
nice for him and his friends for Cian to spend an hour at school on Tuesday
Cian kept hounding me to go to the school, but I waited to
as close to 10:30 as I could to dress him in his uniform and take him up.
It was amazing to see Cian’s face when he saw all his school
friends... and when they saw him. As it
was breaktime, Cian demonstrated his wheelchair skills and also took a little
walk around the yard.
After break, it was down to some work as Cian took part in
the maths lesson. What was incredibly
reassuring from my point of view was that Cian did not look out of place and
from an aptitude level, he had not lost much (if any) progress in terms of
schoolwork. This is despite us being
told that Cian would probably not reach his learning potential as a result of
It is too early and far too optimistic to think his learning
will be unaffected, but it was very encouraging.
Just as we were about to leave school, Cian was a little
sick. But as he had not long eaten an apple, the sick did bring up his NG tube.
So I had to take Cian back to the hospital to have his tube
reinserted which was slightly traumatic.
As he was brave I gave him an option of where to go for food
on the way home as the weather was nice.
He decided to go back to the Cardiff International White Water centre. I agreed although I didn’t think there would
be much action on the water.
When we got there I was surprised to see a car submerged in
the rapids, as the Avon Search and Rescue teams undertook some training. It kept us amused for half an hour, while I
ate both sandwiches that I bought as Cian was not feeling hungry or thirsty.
As Cian hadn’t been drinking anything and he wasn’t
tolerating too much through his NG tube without being sick, we were worried
about his hydration. But as he was back
in the hospital the next morning, we allowed him to enjoy his last night at
When we got him into hospital on Wednesday morning, our
fears were evidenced as his weight had dropped by half a kilo in 4 days.
Our midweek entertainment was provided by Colin who put on a
show consisting of magic and balloon modelling.
As it was Star Wars Day (May the fourth) the children opted for balloon light
Cian was a little unwell during Wednesday’s physio which
worried us a little further.
Cian was given fluids through his wiggly as we tried to
rebuild Cian’s weight and wellbeing. He
actually slept for a large part of the afternoon, which is never fun to witness
when we are now accustomed to him being so active!
He did perk up in the evening and managed to tolerate a
better level of feed.
Cian woke on Thursday morning quite well, and we went to the
playroom to play video games. We also
phoned Bethany to wish (and sing) her a happy 7th birthday. Unfortunately Cian’s belly was playing up a
little which has moved him into isolation!
This is whilst they run a couple of tests to make sure he doesn’t have
Cian had limited physiotherapy as our isolated room this
week is a little cramped, and he also had a lesson with the tutor.
I had an opportunity to have a breakfast and round of crazy golf with 3 other dads in a similar
situation, courtesy of LATCH, while Cian was with mum.
Although it was very enjoyable, it was also incredibly
beneficial socially and psychologically as we could share and learn from each
other’s experiences. All our situations
and journey’s have some major differences, but there was also a lot of common
The amount of support and understanding from everyone in our
lives has been overwhelming and positive... but there are only a handful of
people that can share that level of empathy as others living the same
We now wait on Friday to see whether Cian will be able to
come home this weekend. It will depend
on a number of different factors.... he will need to tolerate food and water
through his NG tube; he might need a top-up of blood products; and he needs to
demonstrate that he is well.