Monday, November 01, 2010

Growth Hormone & Cataracts







Sorry I've not been around to update of late - lots has been happening.

It's two years to the day that Leo completed chemo. Two whole years.

I think I'd be lying if I said I knew this day would come. Two years ago when Leo completed his chemo by eating a plate of roast potatoes he'd requested on the ward at Bristol Children's Hospital, I never imagined this day in my mind. I could barely think about the next month, never mind seeing his start Year 1 at school 23 months after finishing chemo.

And so Leo is settled into school at Ashton Vale and things have moved on in terms of the treatment he continues to have as a direct result of his cancer treatment. The long list of late effects which his specialists told us about in 2008 are all now apparent, except for the learning disabilities.

He takes thyroxine every morning due to the damage by radiotherapy to his pituitary gland, and his right eye is very dry (again due to radiation) and so he now has eye gel 4 times a day and ointment at night. Leo has grown 2 cms in 2 years so still in age 4 - and he's 6 in January (!!!).

In August this year, Leo started daily injections of growth hormone - it's not the nicest way to start Leo's bedtime routine; however, the injections are starting to have their desired effect.

His appetite is much improved which is a huge relief for us, he is changing shape (although we had his feet checked again today and after 2.5 years at size 27, he is still this size ... so we'll have to wait a little longer to buy a larger size), his jawline is changing away from a toddler's round face to more of a boy's face - and all being well, he could grow some 6-8 cms in the next 10-12 months.

It would be very unfair to say he likes his injections as who would? But he is kind of resigned to it, and Leo does know and sort of accept he has to have his 'Easypod' injections. He can't do the injections himself as the needle is in his skin for a length of time to allow the medicine to go into his muscles - so either PJ or I do them each evening and it is horrible injecting your own child, plus it serves as a daily reminder of what he has had and continues to deal with.

Back in August, Leo was also diagnosed with cataracts and until October, we'd assumed this was purely in his right eye, however we've since learned that he has cataracts in both eyes. He wasn't due to return to the Eye Hospital for 4 months after his summer appointment, but once Leo started school again in September, it soon became very clear that he was struggling.

His teachers as well as PJ and I noticed the problem as we were still having to carry him home (growth hormone had not kicked in so his energy levels were rock bottom after a day at school), he also was becoming adamant that he didn't want to go to school and was finding the new regime very difficult.

Initially, we assumed that the transition from Reception to Year 1 were causing Leo's unease with school. In discussion with other parents, this is what they were saying as their children were taking time to settle in. However, there was just something niggling away in mine and PJ's mind so we requested a meeting with the school's Head. She was very supportive and backed up our fears that Leo was perhaps struggling more than others and had 'changed' from his outgoing self from the previous year. Funnily enough, the afternoon of this meeting saw Leo come home and tell me he couldn't see properly and 'everything is too bright'.

Off went an email to his oncologist as well as a phone call to his eye consultant and we saw them last week. The upshot is the cataract in his right eye is in the middle of his eye and has grown significantly in just 2 months. It was also confirmed he has a cataract in his left eye but it's on the periphery of the outside of his eye and has not developed as quickly as the one in his other eye.

Where does that leave Leo? Well, he's now facing surgery very soon to remove the cataract in his right eye and then glasses for both short and long vision as the lens they replace will only give Leo one fixed point of vision in the distance. As he is so young and small, it's quite likely he will then have to have this lens replaced again in 3-4 years to come - with older people who undergo cataracts surgery, it's rare they have to have another op as they've stopped growing.

Cataracts are very rare in children although some can be born with them (3 in 10,000 children can be born with congenital cataracts). Whilst the first op can be seen as 'standard', not all docs who do cataracts operations in the UK, do them on children! The second op can damage the eye considerably but we'll cross that bridge once it's upon us.

We meet the surgeon on November 17th so we will have some more answers about things then but we do know the forthcoming months will be rather unsettling for Leo as after the op, his sight has to settle down before he can be prescribed with glasses (probably bifocals or one pair of each). He'll therefore not be able to see properly for between 4-8 weeks so not quite sure what this will mean for Leo. At some point in the years to come, he will then go through it again with his left eye.

Don't think people realise that children who survive cancer at Leo's age have to go through so much. His injections for growth hormone will last until he is in his mid-20's or more and the fallout of his eyesight issues can continue as long, if not longer. Having said that, I guess we should be thankful; at least Leo is with us and makes us smile on a daily basis; we were initially told that if he did survive, it's likely he would be blind in his right eye anyway - so I guess we should smile despite all this things.

On a sad note and a real wake up call, two children who had treatment at the same time as Leo, have sadly had to start their battle again - Harry who is undergoing further treatment for Ewing's Sarcoma and also Timmy, whose cancer was very similar to Leo's, and he is battling embryonal rhabdomyosarcoma again. Our thoughts are with their families and we hope all goes well for them.

Thanks for all your support and prayers for Leo, and I will update soon - as soon as we know more about his forthcoming op.