Re: Patty I do understand

[Guest guest]

Our hope

are that if we can find out why she has CP that maybe it can lead us in the

right direction for relief.

I am as you also very interested in finding a cure for this disease for

all who suffer, but please dont feel that I did not think the reason for this

disease was not important. Patty for many years we have searched for a

reason for Brandans disease, and after all our searching, Brandan was finally

diagnosed with Idopathic CP meaning they truly are not sure why the reason

Brandan has what he does?

FRUSTRATION GALORE......Hence our knowing our sons medication was

increasing as well as his pain, he was merely existing not living when we

finally made the decision to go ahead with the total pancreatectomy & islet

cell transfer. The options that lied ahead for our son were few, but the

certainly of what lied ahead if we did not do something was somewhat certain.

For Brandan the thought of a second chance to eat as anyone does without

pain and the thought that he would not be a diabetic, for with this disease

it is almost certain, and with this disease it is certain as Shirley another

member has often said that with every attack islet cells are lost, and more

damage is done. Brandans bouts with attacks were relatively frequent and we

knew for him that something needed to be done soon. For us we had exhausted

all routes for him and we knew for him and still do that this was the right

choice.

I thought as Brandan recovered that he is a pioneer for people who suffer

with this same disease, and my thoughts then as they still are, were that why

does one have to suffer so very long before this becomes an option. My

actual words to a doctor that looked over Brandan at the time was I sure hope

that this surgery becomes as routine for people with pancreatitis as it is to

have an appendectomy for appendicititis? When Brandan and Jim another member

of this board where in the hospital together, just seeing them walking down

the hall together and hearing him say those same words, when he shook

Brandans hand in the hall " WE ARE PIONEERS FOR OTHERS WHO SUFFER " gave me

chills.

Although I have waited so very long for my son to be cured of this

disease, he still has and always will have reprecussions due to this horrific

illness. I guess all I can say is I am here and I understand. This is a

disease as any other that will always affect our lives and I will always be

here to see the way through to a cure for all who suffer young and old alike.

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

smiling(cuz sometimes its all one can do!) TTFN... Peg : )