Feeling Frustrated

Dylan is starting to get fed up now and the feeling is mutual.. but the end is finally in sight, we hope anyway!

We had a clinic appointment with Prof. Grundy on Wednesday and have our 'End Of Treatment' clinic appointment date and the date Dylan will have his last Chemotherapy dose and ring the end of treatment bell has been pencilled in the diary. This is pending successful scans before then of course and we don't have a date for his next CT scan yet, they usually only schedule them a week or two in advance.

I can't pretend we aren't counting down the days now. Dylan's panic attacks are getting worse. He is getting more melodramatic over minor issues such as falling over or being told to do something he doesn't want to do. He is getting worked up and scared over his Chemotherapy when it has never bothered him before.. This week he has actually made himself sick at one point he got so frightened and worked up. He hates having his sats checked and won't sit still then starts crying / whinging.

His night terrors do seem to have stopped though (for now) and I can't help but wonder if this is because he is now trying to process these feelings more vocally in the daytime.

He talks a lot about his 'wigglys' (Hickman Line) now and the fact his friends don't have one. He often asks when it will be gone and when he can go swimming properly. I think he is starting to realise he is different now he is getting older and I think it is difficult to process at his age. He is old enough to understand certain things but not others which make it a tricky path to navigate.

We are waiting on a referral for somebody to come and help him process these feelings and emotions but I don't know how long it is going to take as it has been a while already. We are trying our best but sometimes we feel lost and unable to help him. It's a bit of a catch 22 because some of it is behavioural which needs stopping of course but some of it is symptomatic of PTSD, which I already suffer from, so I know needs dealing with calmly and with understanding. It's tricky to know which is which. What is just a typical four year olds tantrum and what is a reaction because of PTSD.

Hopefully we will get some help soon to navigate this mine field and help him process his emotions. I hate going to bed each evening feeling like I've failed him and not helped him properly. It is emotionally draining watching your child struggle mentally and physically.