Today is all done and dusted for the #fairhairedhero and he is back home and snuggled in bed. He was a champion today. He is getting older and his language is coming along so it is interesting getting his perspective on inpatient days. All the way in this morning he kept saying no needle mum, I dont want the doctors today, no hopitool please. I told him he would need 1 needle and that I knew he was scared but i’d be with him all the time. When I managed to get him in the hospital doors he said ‘just 1 needle ok mum’ I said yes ok Finlay. He pointed to a baby in a stroller and said ‘that baby have 2 needles, I have 1 needle, just 1 needle OK!’ Bless him. The way he looked at me with his panicked eyes and more desperately pleaded than asked me ‘all done mum?’ Will literally haunt me forever. It is absolute torture and nothing makes it ok.
Had the chance to discuss things with his endocrine consultant and to be honest I dont know much more about this ‘cyst’. To be honest they dont actually know if it is a cyst by definition, which is basically a fluid filled sac or another type of mass. They will need a MRI to tell them more accurately. However it doesnt seem to matter what the growth on the pituitary gland actaully is – what it ends up being classed as is more determined by what it affects. They are termed pituitary adenomas. The pituitary gland is the MASTER gland in the body responsible for pretty much all your hormones so any sort of growth on it is not ideal. It’s (most often) not life threatening but can cause major health issues. The endocrinologist seemed to think that the growth itself should be managed by his oncologists and he was surprised when I told him they had told me it wasn’t linked to his cancer and that it was an endocrine issue. Needless to say they are having a meeting to work out a management plan and I look forward to hearing what they come up with. It is so hard having care divided amongst so many different departments as they all have their own beliefs and ideas over whats going on with Finlay.
The endocrinologist however, can monitor his hormones and determine a treatment plan based on those results. Finlay had lots of blood taken today to test all sorts of hormone functions which we should have the results soon. He will also need to see an opthamologist to have his eyes tested and checked as a growth in this area can affect the optic nerves. I was told even if all the results come back as clear they will need to be continually monitored as the growth is growing and these issues could arise. Most commonly, eye sight disturbances, insulin issues resulting in diabetes or early puberty which Finlay is showing no signs of any. There is also, however a huge myriad of issues the mass could be contributing too but it is difficult to to determine at his young age what is typical (delayed) four year old stuff and what is more. The hormone results will hopefully shed a clearer picture.
So, he will be schelduled in for an eyesight test, an MRI and also another bone density scan. I’m keeping my fingers crossed his bones have improved enough that we can stop the pamidronate. His endo wanted him to do one more round but I insisted tge scan be done first as i will not put him through thos again unless it is 110% neccessary. I was then told that even if his bone density has improved they will need to follow up with more scans to check his bones remain strong. The pamidronate only works for so long then density can decrease again. Some individuals have genetic disposition to developing osteoporosis. I am hopefull that this is not the case and that with him being so active now he’s bones will grow and develop as normal.
If you read all that essay then you are a true Friend of Finlay and thank you so much xxxx