Every Little Interests The Elite

nerfdad

silvercar wrote: »

Was reading about promising research recently. Hope it arrives in time, in the mean time you are doing an amazing job.

The research will only help 2% and he's not in that 2% it was a lot of shouting about not a lot to be honest as with the publicity a lot of people were left thinking a magic cure was coming but sadly that's not true and the same sort of things were being said 20 years ago when my wife's brother died of the disease so that's why I don't hope for a cure as I know it's not going to happen and I don't waste my time moaning about and concentrate on what we have and what I can do to make his time the best it can be too many family's in my opinion go all over the world for a trial drug that "could help" but also you got to remember you have other kids who need you just as much and a lot of children with brothers with the disease go off the rails because the parents can only think of the sick child and kind of forget about the healthy children they have . We have seen it and heard about this happening too much and that's why I'm not uprooting my family on hope as we know of 1 family that has gone all over the world chasing trials instead of living as a family and enjoying there time together .

nerfdad

Snap-ant wrote: »

Nerfdad

Do go & visit the dragon under Cinderella's castle. Facing the castle look to the left & there is a path under the castle into the dragon's lair.
It moves & roars & is brilliant

That looks very cool:cool:

nerfdad

altojack wrote: »

Nothing wrong in ordering early, better you do it now and you don't have the worry of waiting for it later when it is needed

Remember I'm the guy who got a new house for him 6 years before we needed it :rotfl::rotfl::rotfl:

TrulyMadly

nerfdad wrote: »

The research will only help 2% and he's not in that 2% it was a lot of shouting about not a lot to be honest as with the publicity a lot of people were left thinking a magic cure was coming but sadly that's not true and the same sort of things were being said 20 years ago when my wife's brother died of the disease so that's why I don't hope for a cure as I know it's not going to happen and I don't waste my time moaning about and concentrate on what we have and what I can do to make his time the best it can be too many family's in my opinion go all over the world for a trial drug that "could help" but also you got to remember you have other kids who need you just as much and a lot of children with brothers with the disease go off the rails because the parents can only think of the sick child and kind of forget about the healthy children they have . We have seen it and heard about this happening too much and that's why I'm not uprooting my family on hope as we know of 1 family that has gone all over the world chasing trials instead of living as a family and enjoying there time together .

Tough decisions for any parent...stuff that none of us should ever have to face:o.......as long as you feel as a family that you are doing the right thing by him, then that's all you can do Nerfy. For those of us who have lost loved ones too soon we know it's all about the quality of the life we live which isimportant......

Sunflower1227

diluvsdiscounts wrote: »

You would have had to have had it done before your chemo started. You are too susceptible to infection.

Sorry, yeah you are right

davemorton

aau1 wrote: »

At the risk of finding myself on TMs MIA list :eek: I'm leaving shorty to avail myself of free parking at Glasgow Airport :money: and then onwards to Lanzarote :j

I wonder if ipint works internationally :think: :rotfl:

Yep, it does work. Have a great time!

Snap-ant wrote: »

My Dear Dad has just rung
His friend has made a ramp so he can get onto the patio :j
and now is making one so he will be able to access the garden, go down the path & get into the yard :T:T

Also he can now stand with assistance :j:j

Oh thats good news. Hope your flutter has gone.


Afternoon all.

TrulyMadly

davemorton wrote: »

Yep, it does work. Have a great time!


Oh thats good news. Hope your flutter has gone.


Afternoon all.

DM....thanks for the link to the Yorkshire cottages. They look brilliant and I've made a note of them for future use. Too close for me for a holiday though a short break would be great:)

Things in the field are looking a bit poor for this time of year. The peas have gone a bit yellows for my liking...lack of sunlight probably and the beans have frost damage. Problem is if I leave planting out any longer the growing season will be too short. The leeks and onions are not showing any growth at all......

altojack

Snap-ant wrote: »

My Dear Dad has just rung
His friend has made a ramp so he can get onto the patio :j
and now is making one so he will be able to access the garden, go down the path & get into the yard :T:T

Also he can now stand with assistance :j:j

How fab that is Snap :j. At least now dad will have more independence, making him happier. Life is difficult in a wheelchair especially when you have to rely on others. It gets harder the older we get as we've been used to living an active life.

I'm so very excited about it Snap, it's as if it's me getting freedom but I'm not in a wheelchair. The more freedom dad has the happier he will be. I think I said that earlier :rotfl:

:T :T :j :j :j

nerfdad

TrulyMadly wrote: »

Tough decisions for any parent...stuff that none of us should ever have to face:o.......as long as you feel as a family that you are doing the right thing by him, then that's all you can do Nerfy. For those of us who have lost loved ones too soon we know it's all about the quality of the life we live which isimportant......

Thanks TM:cool:

altojack

nerfdad wrote: »

The research will only help 2% and he's not in that 2% it was a lot of shouting about not a lot to be honest as with the publicity a lot of people were left thinking a magic cure was coming but sadly that's not true and the same sort of things were being said 20 years ago when my wife's brother died of the disease so that's why I don't hope for a cure as I know it's not going to happen and I don't waste my time moaning about and concentrate on what we have and what I can do to make his time the best it can be too many family's in my opinion go all over the world for a trial drug that "could help" but also you got to remember you have other kids who need you just as much and a lot of children with brothers with the disease go off the rails because the parents can only think of the sick child and kind of forget about the healthy children they have . We have seen it and heard about this happening too much and that's why I'm not uprooting my family on hope as we know of 1 family that has gone all over the world chasing trials instead of living as a family and enjoying there time together .

You are right in what you are doing nerfy. The other children need care and love too. It's a harsh situation to travel through knowing his future will be short. Yes, too many families uproot themselves and travel the world looking for the miracle cure at the end of the rainbow. These trials as you say are for 2% which is very small and there is no guarantee it will work for all of the 2%.

You've got a happy little family there that you obviously dote on and spend as much time as you can with the children, all of them. I'm sure there's plenty of tears amongst loads of laughter though, which must at times be difficult to balance. The majority of us have no real idea how you and your wife feel but are always here to give you support, and to tell you, in bubbs own words, 'shut yer cake hole' when necessary :rotfl:

nerfdad wrote: »

Remember I'm the guy who got a new house for him 6 years before we needed it :rotfl::rotfl::rotfl:

I remember it well :T. :rotfl: :rotfl: