I ended the last blog (last Friday) with Cian just starting his chemo.
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 do anything.
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 the week.
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 morning.
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 home.
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 sabres.
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 any infections.
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 ground.
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 nightmare.
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.
Fingers are firmly crossed!