My grandson needs prayers UPDATE ADDED

Please continue to keep Jacob in your prayers. He saw all the doctors today and after they talked and talked to him giving him this statistic and that etc He finally just looked them in the eye and said ....So I am going to die? Apparently one of the head docs looked him in the eye and said YES but we will do our best to make sure you outlive all of us.....and I plan to live to be 80.
I thought what a nice thing to say to a 15 year old. He has been told that absolutely he may NEVER drink alcohol or take any kind of drug that is metabolised in the liver. Jacob apparently laughed and said gee it was a good thing that I have been so good so far, huh?
Joe, Cathy and Jacob are now in Indiana on a long weekend camping trip with very close friends of Jacob's and their families. They planned this a while ago to ease into life after the appt.
Joe is not doing well at all...and apparently their marriage is at odds because of the depth of the hurt here. Joe asked me if this could be because they had had Jacob so early in life....he was just 16 and Cathy was 15 ....I said absolutely NOT! If anything that will have given Jacob a good head start on health. They are all at the WHY stage. I just hurt so for them....they are such wonderful parents and such wonderful people it just proves that sh.t happens for no reason and it is what we do with it that matters most.
So please do keep on praying for us...especially for Jacob of course.......he was also told that because of the auto immune issues he has and the extent of them in our family he will not be a candidate for a liver transplant. So please pray that someone comes up with a cure for this damn thing before it is too late for Jacob.
hugs
Joy





I need t to ask for prayers for my 15 year old grandson Jacob. He has been diagnosed with PCE, a chronic serious and eventually fatal liver disease. We are stunned and numb. Our son and his wife are totally devastated. Jacob is their only child, and they had him when they were just 15 and 16. Jacob is an honor student, a star athlete, a handsome and well liked kid. Has lots of girls who would like to be his girlfriend. He is a freshman at Lumen Christi High School.
The life expectancy is only 25 years......and the only "definitive" cure is liver transplantation. Jacob has Ulcerative Colitis and Crohns disease. Apparently 70 percent of those diagnosed with PCE also have UC and Crohn's.
Jacob has not been told and will not be told until he sees the surgeon for the followup appt in 5 weeks. The decision was made to hold off until then so that he will be told when there is someone there who can answer all his questions. This will be an agonizing five weeks for sure.
Please pray for him......that maybe he could have a miracle? or...if that is not the plan that whatever the Plan is we and Jacob can accept it.

And, could I ask for a special prayer for myself.....I am the cause of all this.....or at least my genes are. I am an auto immune disaster and have passed that along to several of my children and now 3 grandchildren. Please pray that I can remain strong and not fall off the edge. I do not feel guilty....I had no idea I was an auto immune Thyphoid Mary until after I had all the children, so there is nothing I could have done differently.....but just pray that I can put it all aside and be here for them now.

Thanks
Joy

oh bless your heart Joy...I have a Daughter in law with UC and it is rough.I will say many prayers for youe whole family.and hold them in my heart for repeating every night.Please keep us all posted.......it is in Gods hands........I will pray ........

Thanks for your prayers. I feel them already.
I made a mistake........the disease is PSC.......not PCE.......that in itself tells me how upset I am of course.
We have buried 2 of our own children but man! this one is awful........I always have thought how awful it would be to have to watch your own children suffer the loss or potential loss of their child........and now that nightmare is here. I just wish we could fix it.
joy

Joy that is such sad news. Wishing you and all the family all the very best at such a tough time.

Take care

Oh Joy this bought a tear to my eye, I can think of nothing worse than losing
a child, my prayers are with you and your family.

x

Maxina

That is terrible news Joy my prayers and thoughts are with you all and your grandson at this time. Ill keep sending prayers up hun. God bless you all
Barb

oh my how sad...my prayers are with you and your grandson. May God work miracles for you!

Joy, I will pray that the disease hasn't progressed enough to warrant a liver transplant right away, but that the insertion of stints will work well to keep the bile ducts open. I will also pray that if he needs a liver transplant, that a good donor is found right away and his body doesn't reject it and he lives a long and fruitful life. I will also pray for his parents and grandparents to ease their worries.

Joy, I will pray for his miracle!

oh girl I am so sorry, sending healing prayers his way...

Oh Joy this breaks my heart!!!!! My prayers are with you all and I pray God will touch his body and heal him!!

I am so sorry to hear about Jacob, I will be praying for you both Joy - this must be such a heartbreaking time for you - I'm praying for a miracle for him

Joy, I don't know how I missed this post You and your family will be in my prayers if there is anything I can do Please pm me are if you just needed to talk I will be here!!!

I so appreciate all the thoughts and prayers I have felt from you all. This is the strangest and toughest experience I have ever had. This is the kind of nightmare that happens to "other" people.....to the patients I cared for, for the families at church and the strangers who we read about in the paper who need help. But, never in my wildest nightmares did I ever think that anything would happen like this to our grandchildren....especially after they were nearly grown! Of course I always worred that one of them would crash a car or get hurt or killed in an accident......that happens. But illness? Jacob never even had an ear infection when he was little! It wasn't until he was like 11 and was diagnosed with UC and then Crohn's did a disease ever bother our family. Except for Austin's juvenile diabetes and Jared's asthma. But those are things that can be managed and they can live a normal life. Jacob will not.
It breaks my heart that Joseph and Cathy will probably never be grandparents. That Cathy's parents will be losing their only grandchild EVER. So much sadness and so many repercussions for the future because of this disease. I am crying as I write this realizing that Joe will never get to take his grandson to the ball game.......or get to coach his grandson's teams like he has coached Jacob's. I just have to stop this..........
We will continue to pray for a miracle while preparing to be strong and loving and courageous while awaiting it. that is all we can do. That, and already four of the uncles have called to be tested as a future partial or lobe liver donor. They aren't even supposed to KNOW about this yet. <G> Family grapevines are very busy things.
Just stick with us please.........I know I will not be able to do this alone.
hugs and thankful prayers
Joy

Joy, I'm so very sorry to hear your grandson is sick. I will pray for him, your family, and especially you. I am a carrier of "bad genes" too, and have passed them on to my children and grandchildren. Life isn't fair, is it... Don't give up hope! Miracles DO happen. People get organ transplants every day and go on to live full lives... and Jacob is young. He still has a life to live, no matter how long or short. Enjoy every minute of it!!! A cure could be just around the corner... And who knows, Jesus may be coming for us all tomorrow anyway! Trust Him like you never have before!

Thoughts and prayers of you and your family.

Joy so sorry to hear this, sending much love and prayers for you, Jacob and the family

I am praying for a miracle for Jacob and your family!!!

Love you,

Barb

Joy... It is heartbreaking, but God knows what you need even before you ask. Just know that I am praying for you all. Maybe there will be a transplant in his future.
Praying for you,
Terri