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.