More Medical Updates

Saw the endocrine specialist Tuesday morning and although Leo has grown 3 cms since last June, it's not enough and his bloods as well as the lack of growth show the doctors that his growth has slowed massively. Due to the following reasons, we're likely to start growth hormone injections every night for the rest of his life;

1. Thyroid seems to be working as his weight has not slowed in terms of growth as much as his height - last time he was on the 9th percentile on the growth chart and now it's not on the chart so under the zero-th percentile, whereas his weight is steady around the 20-25th percentile. Leo had bloods done Tuesday (and was awesome, again watching the needle go into his hand without a squirm or a squeal - very proud).

2. He seems to have developed a pot belly and although we're now buying Leo aged 4 trousers, it's not due to needing the length but needing to have enough room for his tummy!! His specialist says that a pot belly is indicative that his thyroid is fine but his growth hormone is stifled.

3. These two above indicate his thyroid is working (although we'll know for sure once the bloods confirm this) and the two things which could cause you not to grow are thyroid and lack of growth hormone. So if his thyroid is okay, then it's lack of growth hormone and damage to the pituitary gland as a result of the radiotherapy to his brain.

4. Finally, and this bit PJ and I are really confused about, but the wrist x-ray Leo had last June was examined for bone age and his wrist showed that his bones are those of a two year old? Not quite sure how that happens as he was only diagnosed with cancer at aged 3 years, 3 months? So how does one have a bone age of a two year old? Will ask that question next time we see the doc but it was all a bit shocking to hear all these things on Tuesday that you forget to ask the things that you really want answers to because you're busy listening to things you don't want to hear and your brain takes time therefore to process that info.

It's the first appointment in a while that PJ and I feel very tested about because it's all so real now - yes, we should be grateful that Leo does not have cancer any longer and he's not relapsed as yet, but as if having cancer isn't enough, he now has these other issues. Okay, yes, so kids all over have daily injections if they've got diabetes but they're not our children. Leo is our child and it's just heart-breaking that given all he's been through, it doesn't end. And it won't end...

Anyway, Leo is great at having his bloods done and he even reminds us at night for his daily eye cream when at the beginning he hated it...so perhaps after a few weeks of heartache with encouraging Leo that he needs to have this little painful shot, he'll be fine and it'll be the norm!

The next step is a day in the hospital as an in-patient and they'll give him insulin to make him hypo to see what his body does, as this is meant to provoke the body to send out growth hormone - and chemically, if his body doesn't do this, then he'll become poorly, at which point they'll give him glucose to bring him back out of it - and that's the final proof they need that chemically his body does not respond the way it's meant to. After that, we'll start on the road to daily injections of growth hormone.

Eye hospital next week so a good check on his cataract growth so who knows that that'll bring...