It Never Ends

It's taken a few days for me to update on Leo's latest trip to hospital and once you read this post, you will realise why. We've had to take on board lots of info about Leo's future yet again and so we've has to take it on board properly before committing it to paper!

I guess we always knew and were made well aware that there'd be further treatment needed, as a direct result of the chemo and radiotherapy but, I think once the neuroendocrine doctor explained it all to us face-to-face on Tuesday morning, it really hit us that Leo will never be out of the medical system.

Even if our dreams come true and the cancer does not recur ever, Leo will always be seeing one doctor or another for something relating back to the cancer and its treatment. Tuesday's appointment to see the neuroendocrine doctor was all about the effects of radiotherapy to Leo's growth, early or late onset of puberty and his thyroid function.

To quote the doctor, it's 'highly likely' he will need the expensive growth hormone treatment starting in about 1 to 2 years time which consists of daily injections of growth hormone into his stomach until such a time as the doctors are happy with his height. This is expensive but vital treatment as the function of his pituitary gland will almost certainly have been affected due to both the high doses of radiotherapy as well as the region of his brain which controls growth which was irradiated. It's not just about height either but about his bones and organs growing properly and healthily also.

The second aspect is about puberty which will also be very likely to be affected by the radiotherapy. Early onset could mean it could start in the next couple of years and late onset would be just as detrimental, so this will be monitored and again, once there's a concern, another course of treatment will be started.

Finally, Leo's thyroid may not be functioning properly as a direct result of radiotherapy. Not as likely to happen but is still a huge possibility so next time he has an MRI scan, the doctors will do a blood test to check the thyroid function. Any problems on this front can be 'easily' rectified by one tablet a day for life - I say 'easily' because the thought of trying to get Leo to take a tablet every day is not something I'd like to think about, but then it's easier than the growth hormone treatment which is more likely! But then I guess children with diabetes type 1 take daily insulin injections into their tummies so no doubt with some help and training, we'll have this off pat too.

Apart from all this, Leo's been in summer school all week and spent the mornings up at Clifton College doing lots of jumping in puddles, painting and playing. His eating regime is improving slowly but surely so that's quite pleasing and he is still very tired, but getting stronger day by day. By the time he starts 'big' school in the middle of September, he should be just right!