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!
