Medical Update

Sorry for the delay in getting info on the site and also the huge gap between this and our last update.

After 4 weeks of no hospital appointments, we're now back in the realms of plenty of hospital appointments and so the latest was on Monday. Thankfully, Leo's latest cancer check-up has been clear - no cancer in his lungs / chest which is the main worry as that's where it's most likely to return. Leo was once again fantastic having his chest x-ray done and really, truly, could probably get his x-ray done every two months on his own! He knows exactly how to get to the hospital, which floor he needs for his chest x-ray, what he has to do once the radiologist calls him in for his x-ray and then where he needs to go to meet with Dr. Steve for his follow up.

Last week, we did have a few moments where Leo had said he didn't want to go to the hospital but we've managed to allay those fears for now and he behaved very well on Monday.

One aspect did break my heart as the doctor says it's extremely likely Leo will need to start growth hormone treatment very shortly and after a few more tests to confirm this. Basically his feet have not grown since May 2008 when he was diagnosed and his height is going downhill fast on the growth charts doctors are so fond of. He's now 101.7cm and I think he was 98 cm in May 2008 which means very little growth in nearly two years.

The other scary thing therefore is if his pituitary gland has been damaged which means he's not growing properly, it's therefore much more likely that Leo will develop learning disabilities which affect his memory. We have though decided to not go down the route of neurologists just yet as they cannot give us an accurate basis of what Leo's needs will be for a couple more years.

We are however very worried about Leo's nightmares which he has regularly, pretty much every week. I've managed to eventually get to the bottom of what his nightmares are about and one example from last night is that there are 'people trying to kill me' - again, you can imagine PJ and I being rather concerned about what's going on that he consistently is having nightmares about death ... and not just anyone's death but his own. We've never, ever, ever spoken to him about dying - certainly never approached anything about him dying - he was too young to ask if he was going to die when he was on active treatment, but perhaps he's realising how serious things are despite the cancer not returning as yet? He's most certainly very aware that none of the other 23 children in his class miss so much school due to so many hospital appointments.

PJ and I have therefore decided to ask his oncologist to refer him for some help with his thoughts and fears about who he is and what's happened to him so far.

Another example of where Leo's head is right now is something which happened after the hospital on Monday - when we go to the hospital, we usually have to go to the Oncology Day Beds Unit where it's shoved in our faces about how serious things have been, still are and could be more so in the future - children with no hair and that sick cancer stare are pretty much everywhere (or so it feels) when we return to the hospital. I hate going there but would never let Leo know or feel this from me. But on Monday, he said to me he wished Morgan was in his class and when I asked why, he told me it was because Leo was like Morgan (and this wasn't Morgan, the lovely girl in his class ... this was Morgan, with whom he'd played for about 10 minutes whilst I discussed cataracts and growth hormones with his doctor).

So after just 10 minutes of playing with another child who was bald through chemo, Leo felt so comfortable with him, he wished they were in school together! I think it also shows that Leo somehow does not feel connected with most of the children in his class. To look at Leo, you'd never know his history unless you knew why he wears his sunglasses so much (to protect his eyes and also due to the cataract in his right eye causing so much discomfort in daylight).

Despite trying to keep away from any families we met throughout our journey during treatment, purely to protect ourselves from the reminder of what Leo has been through, we know feel that perhaps as Leo grows up, he may need a circle of people and friends around him who really do know exactly, 110% how he feels at any given time ...and we've now realised from his comment on Monday, that he needs to have those friends and associates now.

So we've got in touch with one other family whose son had the same type of cancer at the same time as Leo, but a year older. We'll go meet them on Sunday and God willing, once those boys are 15 years of age, or 25 years old or older (please God...), if they come across things such as job problems, or cataracts problems or not being able to have children - all due to their cancer treatment - they'll be able to talk through their fears and thoughts together, as they'll most likely know more about how the other one feels than we will!!

Tomorrow's a new day and please let Leo have a few nightmare-free nights...please...