Re:Joey...Brandans doing well also...: )

[Guest guest]

Hey there...Long time since we have spoken we often think of how Joey has

progressed since his surgery. Although I feel Brandan will always live his life

with some type of reprecussion from having this disease, especially the length

of time that our children suffered, Brandan too has progressed miraculously

and life for him has improved drastically since his surgery in Aug. of last

year.

> he has developed alopecia universalis.

> What exactly is this? You had said it was because he had his pancreas

> removed, I am certainly curious.

Noone knows why his

pancreatitis was so debilitating. I think he was the exception

rather than the rule.

Brandan was and still is the exception to the rule for everyone who sees him

at MGH, but his pain management has been nothing short of perfect since

becoming the patient of thier pain management team there. Although since his

surgery we have been seing just his pediatrician now for refills on his pain

medication. Brandan still continues to need pain medication but a very minimal

dose

compared to the enormous amounts he was use to taking. Our hopes are that

there wasnt any type of nerve damage but just as uncharted as the disease itself

was so seems the road traveled after his diseased pancreas was removed.

now he is completely free from pain and

is growing and gaining weight and just enjoying life!

Brandan is not completely free of pain but our hopes are that the residual

pain as I refer to it will over time gradually subside so that he will be

totally pain free, but he too is growing and has gained weight and looks like

any

other healthy teenager now. He has traveled a long road but he is enjoying food

now and yes enjoying life also.

Sue we think of you and yours often, Every time I mention the surgery by the

way now also being performed at MGH, (I was told largely in part to Brandans

surgery) I end up talking about Joey and that he was the first to be done in

Boston at Childrens. I have been pretty occupied lately with my husbands

battle with cancer and it dosent seem like there is enough time in the day.

Please feel free to email me personally anytime for sometimes it takes me a

while

to answer posts. I am so very THRILLED to hear Joey is now completely pain

free. Please tell him hello for us and that Brandan says hi to all too.

As always keeping you and yours in our thoughts and prayers...Keep

smiling..TTFN...: )

Peg Bates

Brwnbare9@...

Massachusetts State Chapter Rep.

Pancreatitis Association Intl.