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 fevers.
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 Rainbow Ward.
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!