Wednesday, 9 May 2012

Just in case you needed a Harry fix ...
Taking pics are a bit difficult at the moment, he's never still so they're always blurry, plus I'm not the best photographer either so apologies for using an 'old' one.

I've met a new Rb friend who unbelievably lives in Fleetwood (30mins drive away), except they're at the banging-their-heads-against-a-brick-wall stage. They've been snubbed by GP's twice and they took her to the a&e who saw a lesion on her right eye and mentioned they thought it was Rb, her parents have seen the white reflex and she has a squint, classic Rb symptoms.
However, Blackpool Victoria Hospital have been, to be perfectly honest, a bunch of w*****s as they have decided to do their own EUA, though they didnt and just tried looking (and I know what its like trying to get a toddler to still still after the stingy eye drops have been put in) and have now given her an appt for another 'proper' EUA in 3 weeks time. WHAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
There are 2 hospitals in the country that can actually diagnose Rb, Birmingham and London so why are Blackpool playing russian roulette with this little girls sight/life. Refer her now, she could be 3 weeks into her treatment by the time their so-called EUA comes round.
I feel like ringing them myself and I really do feel for Kerrie and her family and especially little Violet. Anyway, she has got the support of all us Rb family and hopefully her agony will be sorted asap. I feel a trip to Freeport and a meet up in Costa is on the cards x

Its only 1 week til Harry's next EUA. I am feeling a little anxious to be honest, I am really hoping we get a full clear visit. I will not get my hopes up too high though. I am really geting a little narked with this cancer malarky, I wish to god I can go back to the times where it was something that happened to someone else (not that I want it to happen to someone else). I went to a toddler group today so Madeleine and William could burn off some steam. There was a mum there who had a 12mth old and a 2 yr old and after a few polite exchanges she commented that her 12mth old was just about walking (now I reallllllllllly hate these mums who have to have their baby doing something before anyone elses) when she asked if Harry had found his feet.
I proudly said (and I am so proud of him) he's just started pulling himself up and has cruised a couple of steps and honestly replied he's 16mths old when asked.
Now I got the 'look' which is actually worse than the comments as I could almost hear her mind saying 'gosh that baby is that old and can't even do ..... yet'.

Outwardly, apart from his rolling, squinting and flickering eyes, there's nothing really obvious he has cancer and I feel like screaming when I have to keep explaining why he's so far behind babies of his age. Chemo has a lot to answer for, cancer has a lot to answer for and Harry's rogue gene which has caused all this nightmare better stay away from me.

On a plus side, Harry's physio came round yesterday and she was blown away by his progress, she was beaming as she saw him pull himself up (with the help of his teeth lol), he unfortunately seems to have inherited Matthews hypermobility so may end up wearing the same Forrest Gump boots. This could hinder his walking (like it did Matthew though he got there with his flat feet and inward rolling knees) but they will just observe at the moment, it may correct itself as he gets stronger. Keep him barefoot as much as possible, not a problem as socks are off within seconds.

Well I am really enjoying my peaceful night, Danny is on nights and William is still going bed like a good boy, controlled crying worked, it took 3 nights of tears, 3 with protests and since resignation that it is bedtime and I now get a lovely hug and kiss as he says night night.

So on that note, I will sign off, don't forget to pay a visit to my sister Rachel's blog. Love you all x

1 comment:

  1. Don't you just hate the mums who brag. My daughter walked at 17 months, very late but so what, theres no rush or time limit. Your little Harry is gorgeous and his smile lightens up my day.

    I hope little Violet gets the help she needs.