It's been another very good few days since my previous blog, and we couldn't be happier with how things are progressing.
We have tried to think of different ways to keep everyone amused without having to travel too far or spend too much money. It is important that none of us get into the habit of staying in, as we need to keep Cian active, but not to the point of exhaustion.
We all took a trip on Sunday to the National Museum of Wales, We have been a couple of times before, and it is an amazing building with some pretty impressive exhibits; and the fact that entry to the vast majority of it is free makes it even better.
On Monday whilst Dylan and bethany were in school, we took Cian to the Designer Outlet Cemtre, McArthurGlen, Bridgend.
It's not too far away, and the children's play area is absolutely perfect for Cian. We had got to a stage where all 3 of our kids had outgrown the park, and there was little there to challenge them; but now it is ideal. It is covered from the elements; the flooring is firm but rubbery; the majority of the apperatus is accessible to Cian; and there are toilets on hand.
It has been the one place that we feel more confident in letting Cian 'off the leash'. Instead of just taking a few independent steps, he has the confidence to go for short walks. He still looks a little clumsy, but as strength and control improves hopefully he will start to walk more naturally.
But given we were warned that the likelihood was he would never regain independent mobility (without the aid of a wheelchair), this is absolutely amazing.
Today was a trip back to Noah's Ark for a clinic appointment, and the first time for us to see Dr. Heidi (Traunecker), who is Cian's primary oncology consultant since
It feels a million miles away from our initial meetings with Heidi when we were told in no uncertain terms that the prognosis for Cian was not very favourable; that the treatment was intensive and aggressive; and that the side effects would be harsh.
I think I referred to those conversations in my very early blogs as a kind of hope-ectomy, as we were fed the harsh reality of Cian's situation.
That is not a criticism of her approach, as we have come across different consultants with varying communication techniques. Almost like "Good Cops and Bad Cops". I usually like my bad news sugar coated, whereas mummy Case is much more matter of fact and likes to hear it straight.
To see a genuine beam from the consultant as she witnessed how Cian has progressed since he has been discharged was fantastic.
We had a really lengthy conversation with her regarding the removal of Cian's wigglys (Hickman Line), and a reduction on the amount of medication he is receiving; and things are definitely moving in the right direction.
We were also shown for the first time the scan images of the spinal tumour and the disease on the brain before they were treated; and the more recent scans which demonstrate the cancer has gone. I personally found these fascinating. Looking at those lumps, it was no wonder how they were causing so much pain and grief in those early dark days.
All this positivity was lined with a lot of caution, as we know that this type of cancer does not give up easily; so we have been pencilled in for more scans and further tests after the Summer holidays.
Once we were discharged from Noah's Ark, we decided to take a short detour to the BBC Wales Studios at Llandaff.
Mummy Case and Cian are huge fans of Olly Murs; and we were aware that around midday Olly would be attending the studios to conduct an interview with Eleri Sion regarding his new single. As we would be passing the studios at quarter to twelve on the way home from the hospital, we knew it was too good an opportunity to miss. So we parked up and wheeled Cian to the steps leading up to the building where there was already a throng of excited young girls.
We never told Cian beforehand that we would be trying to see Olly, just in case his hospital appointment overran and we never got there; and when we finally arrived we still didn't tell him what we were doing there... and right up to the point where Olly walked off his tour bus Cian thought he was there to see someone from CBeebies!
But he was not diasappointed and was thrilled to see his idol!
At this point Olly could not hang around and talk to his supporters as he was already running behind schedule and had an interview to conduct, so apart from a wave he went straight into the building.
So our thoughts at this point was whether to go home or wait until he came back out.
Our main concern was that it was just after midday on the hottest day of the year with very little shade or relief from the heat, so we were favouring the idea of getting Cian home.
But to be fair to BBC Wales and a member of Olly's entourage they organised it so Cian was under the cover of the entrance of the building together with another girl in a wheelchair. We were told that Olly would see |them first before moving his attention to the rest of his fans.
We didn't have to wait too long, and although we were told that Olly would probably only pose for a quick photo due to time pressures, he spent a minute talking to Cian and even wore his favourite orange sunglasses.
It was a great experience for Cian and mummy Case, and although I always tease the Olly fans in our household, he did come across as an extremely pleasant and genuine geezer.
By the time we got home, it wasn't long before we were picking Dylan and Bethany up from school on their last day. It was the first time Cian had been up there during school time since his visit a few months ago, and he loved seeing all his friends and teachers. It gave him a real enthusiasm for wanting to go back after the Summer Holidays, but not before a few weeks of fun!
When we got Cian home we knew that one of our priorities would be to build upon the physiotherapy Cian was having at the hospital.
Although the physios and play specialists worked wonders with the resources they have, the last few weeks were restrictive due to Cian being in isolation. Now he's home we are not restricted on times, activities or locations.
The only thing that can hold us back is the weather, but one thing that hasn't held us back is Cian's enthusiasm.
Gav the physio at Royal Glamorgan organised a mini olympics for Cian to take part in; Cian has been to a couple of parks and has been able to use (with support) some of the smaller aparatus; and we have set up a number of video games that involves Cian interacting through movement or dance.
The 2 sports that we always anticipated would be good for Cian's recovery are swimming and cycling.
This week we had a visit from a guy called Chris who was sent as a representative for Cyclists Fighting Cancer, who are a charity who specialise in providing bikes to children who are fighting cancer.
Cycling has many physical and social benefits, and there is no doubt that Cian's recovery would be greatly aided with a trike.
Chris was able to witness Cian's current mobility and allow him to trial a couple of demonstration trikes to see what bespoke features Cian would need and ensure that the bike will be useful to Cian in the short and medium term. There was so much to think about, but just about everything had been considered.
It was so important to us to make sure that we had the right advice when getting a trike and we can be confident that Cian will be safe and get stronger.
So fingers crossed Cian's application for a trike will be approved and he will be riding it within weeks. The rest of us then need bikes so we can go for rides as a family; and Bethan at Ride Bikes Wales has been a great help and I am sure we will be active very soon.
Also this week Cian had an opportunity to visit the guys at First Choice Fitness and get presented with a cheque for the money that was raised at the recent White Collar Boxing event.
He really enjoyed watching the boxers training and sparring.
We can't start any swimming or hydrotherapy until Cian's Wiggly (Hickman) Lines are removed, and fingers crossed the consultants will make a decision on that in the near future.
Our latest visit to the out-patient clinic at Noah's Ark was again very positive, and the consultants are still happy with Cian's progress.
Fingers crossed Cian's End of Treatment Bell ringing will happen at some point next week and should signal the start of a Summer of further recovery.
I thought I would give you a quick update on what has hapened since Cian came home. I think some people were of the opinion that I would stop the updates afer Cian was discharged... but that won't be the case. We are so thankful of the support that we have received, that I will continue to post blogs. Although his treatment has finished, there are a lot of post-treatment things to consider which I hope may be interesting and possibly useful to others.
As you can imagine, it is a bit surreal to finally have him home and the whole family back together under one roof. The whole house dynamic has changed completely.
It will never be a case of getting back to how it was before Cian fell ill, but now working out what the new normal will be.
As mentioned in previous blogs, cian's bedroom has been moved downstairs and the converted garage has been decorated and kitted out to meet all of Cian's current needs. When we were first told that Cian's mobillity would be severely affected by his diagnosis and treatment we feared that in excess on 75% of his time would be spent in that room, but thankfully that is not the case and daytime can be spent in other areas of the home and beyond.
We anticipated that Cian would be fully reliant on a wheelchair or being carried to get around the house; but as he has achieved some supported walking, the wheelchair has been resigned for when he gets out and about.
We managed to get Cian, Dylan and Bethany to Techniquest last weekend. It is important that they spend quality time together, and almost reaquainting themselves. It was also a way to learn how to organise venturing out and ensuring Cian has all his essentials and equipment.
Last Tuesday he had his first out-patient appointment back at Noah's Ark which incorporated a physiotherapy session and a meeting with the consultants to see how things were progressing.
As far as physio is concerned Cian has now been discharged from Noah's Ark due to the amazing progress he has made and has been trusted to the physio guys at The Royal Glamorgan Hospital. It is much closer to where we live so that will make things a little easier.
Dr Maas, one of the oncology consultants reviewed Cian, and apart from a slight loss of weight (which was to be expected), he was extremely pleased with how things have gone and how Cian was acclimatising himself back to home life.
On Thursday I believe that a photo of Cian and me taken for Noah's Ark Fathers Day campaign was used in a presentation at Glamorgan Cricket Club; so if anyone attended saw it please let me know!
Cian has had 2 physiotherapy sessions at Royal Glam and has picked up where he left off. His new physios, Gav and Mags, are great and Cian obviously likes and trusts them. A change in personnel and environment has even resulted in Cian picking up a gear.
Yesterday evening I took Cian and Dylan to the Football Association of Wales Homecoming Celebrations at the Cardiff City Stadium. Again it was an opportunity to understand how I go about booking attendance at large events and knowing what facilities are available when we got there.
Unfortunately due to the strict 2 ticket per person rule, Dylan had to go with my mate Carl, while Cian and I made our way to the diasabled section of the Grandstand Level 3. Pearl, the Diasbility Liaison Steward for that area, and the rest of the team were great. I think it was obvious that I was a bit of a novice at this sort of thing, plus she took a shine to Cian so we were very well looked after.
It was a great evening, and a fitting event to also mark Cian's homecoming. The Euro2016 tournament was a welcome distraction in the last few weeks of Cian's hospital stay. It also takes us back to when Cian was visted by Bale over Christmas and we wished him well for the tournament; which at the time seemed to be an age away!
On the topic of Gareth Bale, we are extremely grateful to the thoughful and generous person who presented Cian with a signed Gareth Bale ball just before he was discharged. It was an amazing gift and again will provide him a pleasant reminder of his journey.#
A very noticeable improvement over the last week is the growth of Cian's eyelashes. He always had very prominent lashes and was always something that was commented on when he met someone new. It's amazing to see them return, but we are still to see any growth in any other areas.
We were always warned that there was a chance that his hair may not return following chemotherapy, and if it did it may be a lot thinner than what it was previously. Normal hair growth was further diminished with the introduction to radiotherapy to the head. But like everything else he has had thrown at him, we hope that he will see his hair grow again soon; and if not he has already demonstrated that it won't bother him too much!
A lot has happened since the last blog, and almost all of it is positive.
At the ward round last Thursday it was agreed that Cian had met all his targets, and his special feed could be reduced over the weekend with a view of discontinuing it this week and a possible discharge!
What this meant was that during the day Cian would no longer be attached to his TPN feed; and although he was not allowed to join the other children of the ward in the playroon (due to the ongoing isolation) we were given permission to take him out of the hospital between the hours of 11:00 and 18:00.
I did the most selfish thing last weekend when my mate announced he had a spare seat in his car to go over to Paris and watch theWales v Northern Ireland game at the Fanzone by the Eiffel Tower. It was an opportunity I culdn't miss, especially as Cian was well, so thanks to short notice begging of my in-laws to look after Dylan and Bethany for a couple of nghts I went on a very enjoyable break.
I don't think Cian missed me too much, as mum took the kids bowling on the Saturday and Cian had his first trip home in quite a few weeks on the Sunday. It was obvious that Cian enjoyed his time out of the hospital, so the focus was to ensure a discharge very soon.
When I got back from Paris at 5pm on Sunday I took Cian back to the hospital and prepare ourselves for what could possibly be our last week at hospital!
If this was the case we would need to make the most of it by making sure Cian had productive tutoring and physio sessions.
While the weather was OK, we managed to take Cian outside. It is clear to see that his strength and enthusiasm to walk independently is growing all the time.
On Monday evening we had a visit from uncle G and the England v Iceland game to look forward to. I won't dwell on the England result as Cian wanted them to progress in the competition.
When we woke up on Tuesday, we were soon informed that Cian's TPN feed had been reduced to a level where it could now be stopped altogether, and the doctor's announced that Cian could be discharged later that day!!
Wow, that came as a bit of a surprise as we were expecting that to happen a little later in the week. We had the choice whether to stay another night, but after leaving the decision to Cian we were soon saying our goodbyes to everyone.
It was 7 months to the day since he was first admitted, and we only managed to get a few days at home in all that time. So it was a tad emotional farewell, but welcome nonetheless.
Although Cian is now entitled to ring the "End of Treatment Bell", it wouldn't be much of an occasion as Cian's isolation means that nobody would be able to witness it. So we have postponed that event for a few weeks time. But we couldn't leave without marking it in some way, so we got him to wipe his name off the ward board.
It was fantastic to get him home, and Dylan and Bethany had a great surprise for when they got home from school.
We had accumulated to much stuff in all that time, I needed to return to the hospital on the Wednesday and collect all our things as well as hand back our accomodation keys and parking card back to LATCH.
We are now officially discharged from the ward, but Cian's journey does not end there.
We had an appointment with our community nurse today; Cian has a community physiotherapy session at Royal Glamorgan Hospital; and next week we have a clinic appointment back at the hospital.
Cian still has his wiggly (Hickman Line) in and also his NG tube. These are likely to be there for a few weeks, until we are sure that Cian does not need any more medication and his appetite is back to a satisfactory level.
Last Friday was a new dawn for us, as we had been told Thursday the news that Cian had finished his treatment and we were able to digest that and come to terms with it.
The final phase would be to ensure Cian was free from infection; he put on weight; his tummy could tolerate and process food; and any pain & sickness was under control.
Once all these are achieved, then we can look forward to a more permanent discharge.
Sunday was great because as well as seeing Dylan, Bethan and Cian on Fathers Day morning and opening my gifts; we were also visited by my members of my family including my mum and dad.
Due to ill health to my mum and balancing care between Dylan, Bethany and Cian; we haven't seen my parents for a few months.
We have seen huge positives in Cian as his appetite is slowly returning;, he is feeling well in himself; he is working hard at physiotherapy and tutoring; and he is experiencing less pain.
Although we are still isolated, we have still been venturing outside when the weather allows; and we have even managed to get him to walk a few steps. He can definitely achieve them, but he does get a little excited and silly which does mean we have to remain a little cautious.
Cian has started to eat snacks and bites of meals. Not in any great amount, but the important thing is that he is starting to digest solids; and this in turn in translating into (apologies for the next bit) more conventional number 2's.
I would usually try not to go down that road, but it is of vital importantance as it is one of the considerations they have when judging if Cian neeeds to be isolated. For them to gague poo consistency, they use the Bristol Stool Chart.... yes there is a poo scale!! The fact that one exists is funny enough, but the fact that it is named after Bristol makes it slightly more hilarious. In the film Twin Town, Swansea was dubbed a 'pretty sh!tty city'; but maybe that title should now go to our neighbours over the Severn Estuary.
Cian and I have continued to watch the Euro2016 tournament, and he was very happy that both Wales and England have progressed to the last 16. However, as I watched todays matches, you can tell that he is becoming slightly less enthusiastic.
As we are still isolated, Cian didn't manage to see Wendy but Jasper was able to spend a few minutes with him.
We managed to take Cian to McDonalds and take the food to Heath Park to eat. This worked so well as an extra physio session plus a good incentive to get him to eat. He managed about a quarter of a hamburger, a chicken nugget and a couple of fries.
Also this evening the ward was visited by Mickey and Minnie Mouse. Again due to infection control, they weren't allowed to come too close, but we did manage to see them at the door.
The visit was organised by friends of Demi, who is a brave little girl Swansea who has just returned to the ward to continue her chemotherapy, following an operation in Birmingham to have her left arm amputated.
Demi is an inspiration to us all, as her positivity and fun-loving attitude has demonstrated that there is nothing that these children cannot overcome. She is always surrounded by a commited group of very supportive family and friends.
You may recall that Thursdays are when all the consultants and professionals have their 'Grand Ward Round' and make ongoing plans on individual cases.
Given all the positivity this week in terms of Cian's well-being and weight gain he has achieved all the targets set), we hope and expect that there will be a plan for discharge. It will probably not be before this weekend, but certainly within 7 to 10 days. I will make sure to update you all when we have a clearer understanding ourselves.
Just a quick update as I mentioned in yesterdays blog that today was going to be important on a number of different levels. So here goes...
Firstly, Cian had a good physio session as we managed to get him into the Noah's Ark Garden and have a few games of tennis; egg & spoon racing; and mini beast hunting.
Next we had the visit from infection control a half hour before the big game kick off. Frustratingly and annoyingly it wasn't good news as he was told he would have to remain isolated for another week and quite possibly two. Although the representatives presented a good case why Cian should remain confined to his room, I did my very best to outline how such treatment actually hampers his recovery.
Cian is still showing as positive for the infection C-Diff, but we have been told that this is unsurprising; and it may not be that he is actually a risk to anybody else... but it is not a chance that the hospital are willing to make. My head and heart are telling me different things.
This was not the news that Cian wanted to hear as he was so hoping to watch England v Wales in the Playroom which had just been kitted out with a new projector and screen courtesy of Dreams & Wishes; and match treats and snacks supplied by LATCH.
As you may have gathered in these posts by now, Cian does not have tantrums... but in silent protest he refused to watch the match in his room although it was on the TV. He had has back to it and watched YouTube on his tablet; and this is the boy who has quite happily watched some of the more obscure games of the tournament with me thus far!
I totally respect his stance, although it was never going to get him anywhere.
As it happened, I missed most of the second half myself as mum and I were whisked away to have a private meeting with his oncology consultant whilst Cian was looked after by Kimberley.
It was at this meeting that we were delivered the news that the decision had been made to not proceed with Cian's last dose of chemotherapy. Cian's tummy issues combined with a slow recovery rate of his bone marrow highlighted that it was safer in the long run not to go ahead; and that any further delay would actually negate the benefit of further chemo.
So on one side we can celebrate that Cian no longer has to endure any more treatment; but on the other we are fearful that the last chemo may have been the one that stops this awful cancer from recurring.
There are so many ifs, buts and maybes in these kinds of decisions. We have put our faith and trust into Cian's consultants for the last 6 months, and that has been repaid in Cian exceeding expectations on all fronts. Therefore, we are satisfied that they have made a decision in Cian's best interests.
Unfortunately this doesn't mean we can just take Cian home and get on with the rest of our lives; but we are likely going to be spending the next few weeks trying to build up Cian's weight and solving his tummy issues.
In the last few weeks I have reduced the frequency of my blogs to just once or twice a week. This is because not much has been happening, but all of a sudden things are looking a little more busy.
I think it became quite obvious on Monday that Cian's recovery was being hampered by him being confined to his room. Once he was let out to go for his tests, he became more energised.
So although Cian hadn't received the all-clear to roam the ward just yet, it was deemed acceptable that Tuesday's physiotherapy session could be held outisde within the hospital grounds. It's not the first time we have used the outdoors, but it was a very welcome alternative to his room.
Before going outside Cian had a warm-up dance session with mummy Case and Kimberley the Play Specialist.
So accompanying me and Cian outside were mum, Kimberley and Ann the Physiotherapist.
The session consisted of walking around the grounds; saying hello to the ducks; looking at the exercise equipment; and taking part in a conga.
As a treat for his hard work, I then treated Cian to a magazine from the shop.
The idea was to do something similar on Wednesday, but the weather unfortunately prevented us venturing out; but at least Cian still had plenty of energy to get involved in indoor physio, which in recent weeks he has been more reluctant to do.
We have also seen him being more cooperative and enthusiastic with his tutoring, and he has been reading quite a lot this week.
His day was also brightened by the visit of Jasper, courtesy of Dreams & Wishes. Jasper has agreed to be host AND entertainer at our Charity Ball in October. It will be a fantastic occasion and I honestly can't wait for the opportunity to thank all the charities and healthcare specialists for all they have done for us.
I am also looking forward to this Friday, where Cian's Kicking Cancer is being supported by An Evening with Ricky 'The Hitman' Hatton in Merthyr Tydfil. I have met Ricky on a few occassions when I was living and working in Manchester. He is not only a boxing legend, but also a top bloke. I have to thank Lyn Williams of Kreelicious and his wife Rachel for thinking of us when they organised this event.
So this evening we have had our visit from Uncle G before settling down. At around half 7 the nurses performed their hand-over. The nurses on Rainbow work approximately 3 twelve hour shifts per week.
One of our nurses tonight is Lucy, who is performing her last shift as a student.
In the 6 months we have been at the hospital (on Rainbow and Owl wards) we have been looked after by a number of students at various stages of their courses.
I can honestly say that the quality, empathy, professionalism, and enthusiasm shown by them all is amazing. It really takes a special person to become a nurse, and to look after sick and seriously ill children is even more challenging.
Cian presented Lucy with a card and box of chocs as we have seen more of her than any other students and he has definitely taken a shine to her.
Fingers crossed she will make a return to Rainbow at some point once her career kicks-off for real in the Summer!
Just to update you on health things.... Cian's tummy tests at the start of the week have come back normal. Tomorrow will be a big day as we will find out once and for all what has been decided regarding Cian's final chemo; and we will have a visit from infection control to see whether Cian is finally ok to come out of isolation... hopefully just in time to watch the Wales v England game on the new projector and big screen which has been donated to the ward by Dreams & Wishes!
The end of last week basically went according to script.
Our daily routine at the hospital were fast turning into 'Groundhog Day', as Cian continues to be isolated in his room while being given a variety of different antibiotics.
His tummy is continuing to cause him lots of grief, and he is still being tube fed directly into his bloodstream.
Thursdays are probably the most important day of the week on the ward. It is when the "Grand Ward Round" takes place.
This is a meeting of all the different specialists and consultants where they discuss each patient and make decisions and plans on what treatments and interventions are likely to take place over the next 7 days.
It was decided at this meeting that Cian be referred to the "gastro team". Unfortuantely they are not a group of top notch chefs as the name suggests, but a team who specialise on the digestive system.
The problem is Cian's tummy troubles cannot be easily put down to any one thing. He has has chemotherapy, radiotherapy, chronic sickness, infections, bouts of constipation & diarrhoea, loss of appetite and a mountain of daily drugs. Therefore, Cian will now undergo further tests, scans and screens to try to establish what is going wrong.
The hope is that whatever the issue is, it will be something that is short term and easily treatable.
It is not surprising that the oncology consultants and reluctant to give Cian his final round of chemotherapy until there is a greater understanding of what is going on. I even asked the consultant whether a decision may be made for Cian not to receive his last chemo? This was obviously a point of discussion during the Grand Ward Round, and it was pointed out that there may be convversations along those lines if it is though more chemo may cause further complications.
It is a very tricky dilemma, as on one hand we have already received a very positive MRI scan that show that treatment thus far has been successful, so could it be that any more chemo is just overkill.... or could this last chemo be critical to ensuring there is no future recurrence. We all know that doctors are always keen that we complete any course of medications.. even after symptoms are gone!
Every time I consider this question I come up with a different answer.
As mentioned in the last blog, there was no prospect of Cian going home on the weekend, so the family spent time at the hospital together.
I spent the first part of the weekend with Cian, which I have to say was enjoyable, as we watched the oping cermony and game of Euro 16 Friday night; the Wales and England rugby matches on Saturday morning; and the monumental Wales v Slovakia game on Saturday afternoon.
I am so pleased that Cian likes his sport, as it is something that is keeping us sane during his time in isolation.
So today (Monday) saw the start of Cian's tummy investigations, and with it brought a change in environment and mood.
Cian had to go to the hospitals Octopus Zone (Radiology) for his tests. A very rare and welcome out of his room and off the ward.
I have mentioned in previous blogs that I consider the radiology department to be absolutely amazing. There is a variety of different machinery there for performing scans and screens of all kinds. You would think that such an environment would be daunting and scary to small children, but there is so much there to distract, entertain and relax them.
Cian had a Barium solution introduced to his digestive system, and the flow of this chalky liquid was monitored via a series of x-rays. As the full digestive process takes a number of hours, we had to make a number of trips back and forth.
It was also an opportunity for Cian to stretch his legs. As we keep stressing, his progress in terms of his mobility is critical; and for the last few weeks the chance to get Cian on his feet have become less and less and the majority of his time is spent in bed.
So to see him walk with control and confidence today was so pleasing to us and to his physiotherapist. The change in scenery and increase in exercise also contributed to a complete change in mood and wellbeing. Cian was much more alert and happy.
Cian also got to see a new mural that has been erected in the hospital corridor. It is an impressive picture.
The results of these tests should be known in the next day or two.