Reece goes away for Christmas. Again.

[mondatoo]

Do you know how much the boston thing is gunna cost,will it make him properly better or would it just be a short term measure,if it's guna make him better for life then let's just get going with it it's only money at the end of the day a lot of people including myself and i've never even met you yet are emotionally attached to reece and your situation so let's do it i'm pretty sure whatever the figure is we could achieve it

[The_nun]

The op that is performed in Boston, can be performed here, it is down the same line as the major one Reece had last year, very very major surgery, but in a different procedure. The op Reece had was " invented" here. The Bianchi, the op in Boston was invented there, the S T E P. They are both bowel lengthening op's, but the S T E P is now done very much more over there with very successful results. One can not say whether or not it would work for Reece, but looking up on write ups, it looks like they have far more experience over there due to more op's being performed. Saying that, if we could find someone here that was willing to seek advice, so to speak, from Boston, for after care, we may move forward here. Hard to explain, but I can try, Antonino is a paediatric bowel surgeon, we also need a  paediatric nutrient  Consultant  Expert, that can help in Reece's after care. In Manchester it is all about not asking for advice, Reece used to be under the care of Fragbemie, who was his Gastroenterology specialist, but he failed us on many accounts, the main one being, had he introduced us to Antonino in Reece's first year he would have had the Bianchi performed and most likely we would not be in the position we are in now, as in the first year it is quite successful, but instead we were told by him that only a Bowel and Liver transplant was the only option that would save Reece. It wasn't till we went to Birmingham that we were told of Antonino and his Bianchi op, even though Fragbemie and Antonino work in the same hospital. It is all about silly hospital regulations, Antonino was not allowed to contact us and so called poach a patient, give him his due, he tried, but we were not to know this until it was too late. But they all seem very set in their ways, even the Ward Manager said this only this week to us on a meeting we called. She actually said that they are like school children at times, one pulling one way etc and she is in the middle. Very sad really when they are messing with lives, but then she added that they always have the patients best interests being at the foremost, I struggle to understand this. There is a doc in Leeds called Mr John Putnis who we have been put in touch with, we  are trying to arrange an appointment with him but to do this Manchester have to do us a letter that is going to take some time in getting as they are busy etc.. and it will also look bad on them if we move, I personally don't care how bad it looks on them, but Stacey, after all having the final say, is scared to jump out the fire into the frying pan. So hopefully once this meeting is set up we will have an insight as to if Leeds will be a good move. If not Boston it has to be. It would definitely be Boston if money was not an issue but it is and we cant dwell on that fact.

[tikay]

The op that is performed in Boston, can be performed here, it is down the same line as the major one Reece had last year, very very major surgery, but in a different procedure. The op Reece had was " invented" here. The Bianchi, the op in Boston was invented there, the S T E P. They are both bowel lengthening op's, but the S T E P is now done very much more over there with very successful results. One can not say whether or not it would work for Reece, but looking up on write ups, it looks like they have far more experience over there due to more op's being performed. Saying that, if we could find someone here that was willing to seek advice, so to speak, from Boston, for after care, we may move forward here. Hard to explain, but I can try, Antonino is a paediatric bowel surgeon, we also need a  paediatric nutrient  Consultant  Expert, that can help in Reece's after care. In Manchester it is all about not asking for advice, Reece used to be under the care of Fragbemie, who was his Gastroenterology specialist, but he failed us on many accounts, the main one being, had he introduced us to Antonino in Reece's first year he would have had the Bianchi performed and most likely we would not be in the position we are in now, as in the first year it is quite successful, but instead we were told by him that only a Bowel and Liver transplant was the only option that would save Reece. It wasn't till we went to Birmingham that we were told of Antonino and his Bianchi op, even though Fragbemie and Antonino work in the same hospital. It is all about silly hospital regulations, Antonino was not allowed to contact us and so called poach a patient, give him his due, he tried, but we were not to know this until it was too late. But they all seem very set in their ways, even the Ward Manager said this only this week to us on a meeting we called. She actually said that they are like school children at times, one pulling one way etc and she is in the middle. Very sad really when they are messing with lives, but then she added that they always have the patients best interests being at the foremost, I struggle to understand this. There is a doc in Leeds called Mr John Putnis who we have been put in touch with, we  are trying to arrange an appointment with him but to do this Manchester have to do us a letter that is going to take some time in getting as they are busy etc.. and it will also look bad on them if we move, I personally don't care how bad it looks on them, but Stacey, after all having the final say, is scared to jump out the fire into the frying pan. So hopefully once this meeting is set up we will have an insight as to if Leeds will be a good move. If not Boston it has to be. It would definitely be Boston if money was not an issue but it is and we cant dwell on that fact.

Well if Boston does become something that seems the only answer, then I suggest....

1) You get a ROUGH estimate of cost, including costs for you, Darren or Stacey to go with him, & including Medical Costs, hotel & flight costs, etc.

2) You tell us how much that estimate is, with an approx breakdown.

3) Then we - the blondes - cam have a brainstorming session, to see....

a) If we think it's realistic to try & raise that amount of money.

b) If so, we can set about raising it.

I fullly expect the £umber will be well into 5 figures. But I'd be surprised if, should we all work together, & tap into various money-raising methods & means, we could not have a good go at raising it.

So, if Boston becomes the optimal way forward, we are far from beaten.

Hope the boy is in good heart today.

[The_nun]

Thanks Tony,

He has gone into school, just so that he isn't missing out too much really. He is still sore so Stacey has asked for him not to be made to go out, walk to lunch etc. If it gets too much he is coming home. I am back on lates today.

[Laxie]

Boston will be 6 figures.  Promise you.  BUT, that doesn't mean we can't come up with ideas between us to get it done.

[tikay]

How's the lad, Maureen?

And you?

[cia260895]

How's the lad, Maureen?

And you?

[The_nun]

Reece is being sick when he goes on his TPN, he weighed 13.1 here yesterday. He is still going to school. No response yet from the hospital RE; info required for both Leeds and Boston. No contact from Antonino although he was supposed to return to work yesterday. Not sure how we are to be honest, or where for that matter. Plodding springs to mind.

[RED-DOG]

Reece is being sick when he goes on his TPN, he weighed 13.1 here yesterday. He is still going to school. No response ye tfrom the hospital RE; info required for both Leeds and Boston. No contact from Antonino although he was supposed to return to work yesterday. Not sure how we are to be honest, or where for that matter. Plodding springs mind.

Plodding Springs. Sounds like somewhere old folks live.

Chin up Maureen.

XX

[The_nun]

Reece is being sick when he goes on his TPN, he weighed 13.1 here yesterday. He is still going to school. No response ye tfrom the hospital RE; info required for both Leeds and Boston. No contact from Antonino although he was supposed to return to work yesterday. Not sure how we are to be honest, or where for that matter. Plodding springs mind.

Plodding Springs. Sounds like somewhere old folks live.

Chin up Maureen.

XX

ty and modified

[ripple11]

 I was flicking through the Boston Childrens Hospital website's "giving section"....and noticed on the corporate part that they have an annual poker tournament to raise funds!

 great minds..........

http://giving.childrenshospital.org/NetCommunity/Page.aspx?pid=267#section5

[The_nun]

I was flicking through the Boston Childrens Hospital website's "giving section"....and noticed on the corporate part that they have an annual poker tournament to raise funds!

 great minds..........

http://giving.childrenshospital.org/NetCommunity/Page.aspx?pid=267#section5

Never saw that ..just been on it looking at doc's etc...

[The_nun]

HoldorFold mentioned getting Reece a charity number. When i looked at the charity site it said summat about 5k per yr income raised, we dont get that much but if Boston was to become a reality i will contact them via phone and ask about getting him a number. At the moment we just have his bank account that Kev and Rooky9 see. Anyone is welcome to see it too, if they so wish. But if any1 would like to take responsibility of getting an official charity number, I would  gladly agree to that. It would be one less thing for us to take on board.

[tikay]

Hi Maureen,

How is The Man?

[trafficjam]

Hi Maureen,

How is The Man?

+1