my fat wife decided to go for a wee swim, for a good cause.

[Daniël Bos]

Hi Guys,

 

I've started this here thread to inform you of a potential hazard in smalls, to beg for money, to inspire you lard-arsed types and to baffle the plain lazy.

 

I'll start with the beginning (it seems appropriate...)

 

 

In July 2007 I gained a nephew, I already had the one now there was another. Both boys sons of my wife's sister.

One month later I became a parent myself when my wife gave birth to my twin daughters. As our smalls breathed their first breaths all seemed fine and dandy.

One of my girls seemed a little weedy next to her cousin, but then she'd had to share a womb and he didn't.

As the days went by we noticed something was wrong, quite wrong.

Ernie (my nephew) never seemed to look at anything in particular and his eyes were constantly moving sideways. A bit freaky really, they'd flick to one side, then scan to the other side in a series of very jerky movements, one "cycle" taking perhaps half to a whole second before repeating itself.

 

When my sister in-law decided it was definitely not right (for a little while one just assumes it'll stop, be ok, fix itself, he'll start to focus soon...) she took him to see her GP who fortunately was very much "on the ball" and he sent them straight to Addenbrooke's hospital in Cambridge, where an eye specialist gave the the preliminary but fairly certain diagnosis of Retinoblastoma.

 

Retinoblastoma is a cancer of the eye that occurs in children. As the eyeball grows the retina grows tumors rather than retina.

It normally is the case that children that get it in one eye are just very unlucky, children that get it in two eyes are more unlucky still and in all cases thus far have inherited the disease by genetics from their parents.

In most cases in the past the children would simply die as the tumors escape the eyeball via the optic nerve that travels straight into the brain.

They'd be the kids that were "just not meant to be..." and died without the medical profession really knowing why.

There's a multitude of treatments available nowadays and if caught early, most times both the eyeball and the child's life can be saved.

 

Ernie was referred to a specialist unit in Birmigham's childrens hospital where the country's foremost experts on this (and many other) childhood ailments reside.

 

Ernie was unique in how bad his case was. He had RB it both eyes (though nobody in the family carries the genetic markers, a medical first) Another first was that never before have such fast growing aggressive tumors been seen in any childs eye, anywhere in the world.

 

He underwent a range of treatments, ranging from radiotherapy where the implanted a piece of radioactive material in his head, against his eye to try and kill the tumors.

Chemotherapy, as most of you'll probably know a range of "medication" so finely balanced on the knife's edge so as to try and kill the tumors but (only just) not the patient. One of the most common side-effects of the chemical cocktail they gave our Ernie is a wide range of different cancers later in life...

 

And the third "main" treatment was "cryo-therapy" They'd freeze his eyeball with a stream of liquid nitrogen to completely immobilize it, the shot bursts of laserbeams at the individual tumors so the difference in heat would make the explode..

One of the main issues with cryo is that where the tumors used to be, the eye forms scar tissue which is forever in the way of your vision.

 

At one stage, between one treatment and the next check-up a period of one month, one of his eyes had formed over 40 new tumors, the next day there were 42. This exceptional rate of growth meant that after a hard and long battle his parents made the decision to have "the bad eye" removed. The other eye, though still cancerous is/was not as bad and treatment continues to this day.

 

Ernie is now six years old and has not had any new tumors for 2 years. His prosthetic eye comes in quite handy (like when he leaves it to watch tv while he has to go have his dinner...) He'll need to be frequently checked for new tumors until he is about 8 or 9 as that is the age the eyeball stops growing, and with it the retina and the cancer.

Though his remaining live eye is badly scarred inside he can see (though very limited and he needs help and aides such as special glasses etc) and there is hope for medical progress to help him see better in the future.

 

 

One of the main ways to spot a potential patient is "white eye" which is where the eye appears white as opposed to red with flash photography. This is the tumors reflecting the flash rather than the retina's blood-vessels.

If you spot white eye in a picture of a child, please get them checked by a GP and mention your concerns

 

 

Last summer, his granddad (my father in-law) who does a lot for RB's dedicated charity CHECT -who are the best support a parent in that situation could hope for, with help and advice, support and "medical translation" etc- decided it was a good plan to raise some fund for the good cause by swimming across a lake. Englands largest lake, the swim will be 10,5 miles at least (potentially more due to currents, and not swimming dead-straight etc).

My father in-law is 70, looks 8 months pregnant and only has one arm... He's managed to convince my wife she should come for a swim too, she was 150-odd kgs last year, built for comfort.

So, the training began and with it the weight loss and increased fitness. As part of this she ran a couple of 10K races, swam some 60-odd miles in open water and lost nearly a third of her bodyweight.

She's still heavier than me (I'm 6'5" and a solid 105kgs..) but boy can she swim. She has the grace of a swam when in the water and swims with the most beautiful clean smooth stroke you've ever seen!

 

Oh, and she's convinced me and my brother to row her support boat:sneaky2:

 

Tomorrow evening we'll set off to our "base camp" to prepare for the swim on Saturday.

 

 

If you can spare a couple of quid, please will you sponsor her (and mention Arbtalk in your message) any amount is welcome but think, do you need that pub lunch/ new pair of shoes/ shiny toy etc...

 

You've made it through the whole post, would you make it across the whole lake?

SPONSOR HER HERE

Lake Windermere 2013

Edited September 17, 2013 by Daniël Bos

[russbushpig]

What a kid! Donated a token amount - GOOD LUCK...

[Rich2484]

I've seen that lake. It's the one the cross channel swimmers must swim twice before hitting the channel.

 

Yes it's as daunting as it looks.

 

Good luck to her fella. And all the best.

 

Please insure whoever is on the safety boat is first aid trained for the task. : thumbup:

[sandcastles]

Good luck to you all on Saturday... have put in a well deserved few quid

 

Sandy

[Daniël Bos]

I've seen that lake. It's the one the cross channel swimmers must swim twice before hitting the channel.

 

Yes it's as daunting as it looks.

 

Good luck to her fella. And all the best.

 

Please insure whoever is on the safety boat is first aid trained for the task. : thumbup:

 

On the official support boat, in charge of safety are my sister and brother in-law, Ernie's parents.

He's as trained as you can get being an ex army medic turned London paramedic, in charge of stuff. She's a nurse-practitioner and the bossiest person I know. We'll be sweet:001_cool:

 

Should I worry about me not being that daunted? Got a keg for me and my brother, and enough picnic provisions to last us a day or three...

[Daniël Bos]

What a kid! Donated a token amount - GOOD LUCK...

 

Good luck to you all on Saturday... have put in a well deserved few quid

 

Sandy

 

Thank you:thumbup::thumbup:

[Mull]

Can't seem to get past " your address details" on donation site!

Will keep trying.

Appreciate your humour pal, best wishes to the boy.

[Daniël Bos]

Can't seem to get past " your address details" on donation site!

Will keep trying.

Appreciate your humour pal, best wishes to the boy.

 

hmm:confused1: 'puters baffle me when they do work, when they don't i defer to higher powers (SWMBO) my brother in-law is in charge of web-stuff, if you keep getting stuck pm me and I'll try and sort it with him?

[Buzzsurgeon]

Good luck to team Windermere for a important cause. I admire the courage of the parents and children. Donation made

[predator]

i have just read this post and feel i should go out to my plot as moneys are tight for me too long story. I will split some wood & donate sell my firewood as i normally dont sell it just share it with my friends who help me get it from arb waste etc it will be on ebay asap