Normality

I cant believe its been 3 months since I wrote an update! I guess it’s because there is less to say which can only be a good thing.  Things have been pretty ‘normal’ here, although I struggle to know what normal is after the life we have led the past few years.  Some days for me normal can be a challenge.  I struggle to plan simple tasks like food shopping, what’s for tea, remembering birthday’s, remembering anything really! I am still very preoccupied with Ryan and have to focus on not worrying about what the future holds, ordering your thoughts can be exhausting!

For Gareth normality is being back at work, he had no choice but to slot back into work last year when we got back from Germany. But for Ryan and I ‘normal’ has been slowly evolving over the past 6-12 months.  Like most oncology parents I lost my job recently as I have been unable to work whilst looking after Ryan, but I wouldn’t have had it any other way, I still feel that every moment with Ryan is precious.

Ready for the school disco!

For Ryan normal has been becoming part of his class at school finally, and he has really enjoyed it!  He skips to school and then chats about what he has done all the way home.  He has still not attended a whole day but is gradually increasing his time in school.  

He has been in almost every day since a few weeks after the Easter holidays and some days attended in the morning and afternoon but has not wanted to stay at lunch times yet.  But even so he has made huge progress and we all feel very proud of what he has achieved.  

He has attended his first ever school disco (and had a great time) and his first ever Sports Day – very emotional for me and something that Ryan had been very much looking forward to.  

Sports Day - the big smile says it all!

He has been having swimming lessons, enjoying playing football with his friends in the park and overall seems to have a new found energy compared to last year although it's going to be a while before he can keep up with his friends.  We are very much enjoying doing normal family things and spending time together away from a hospital environment.

Medically things are good too overall; the MIBG scan that we had in May showed no evidence of disease, which for me was a huge relief as Ryan sometimes complains of a pain here or there or stomach ache and a little seed gets planted in the back of your mind that only goes away when you get such results. 

His hydrocortisone was reduced to a minimum dose as opposed to the generous dose he needed when he was not so well last year; a synacthen test was done in hospital to see if the medication was still needed or if Ryan’s adrenal glands were producing sufficient cortisone.  He failed the test, producing almost none of his own but there is still hope that in time his adrenal glands will recover and this medication can be stopped.  Reducing this medication, which is a form of steroid, had the effect of reducing his appetite, so with his increased activity levels this has meant that he has lost weight! Not ideal but again something that will hopefully rectify itself in time.

He still gets breathless on occasion and as his lung function test shows a restricted lung function we are awaiting referral to a respiratory consultant to see if they can give a clearer picture as to what the problem might be.  But after all the chemotherapy and radiotherapy Ryan has had it would be amazing if he didn’t have a few problems, we are just lucky that they are not currently having a big impact on his life. 

He has been attending hospital every 6 weeks for an IV infusion of immunoglobulin, which was the final missing part of his immune system but blood tests now show that his body is now producing this and so no more infusions are needed.  He was also having a venesection (blood draw) every 6 weeks but he was becoming noticeably tired for weeks afterwards and so we are now waiting 12 weeks in between so although he still gets tired for a couple weeks he should feel well for longer periods in between. We also had the fantastic news that his chimerism is now complete, this means that there is no trace of any cells, in particular t-cells, originating from Ryan’s old immune system.

His next hospital visit is for a full body MRI scan to check that there remains no evidence of disease, at present we are having scans every three months and they just never seem to get any easier!