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Amy Jacobs
11-03-2011, 06:07 AM
Have you ever heard of this? My grandfather become really ill 2 weeks he ago found out he has cancer, and now this. (hes is currently in the burn unit ICU because his skin is coming off) I have never heard of this before. They live in Valrico FL..I googled this I wish I would not of.. Some pictures I saw broke my heart. They said eventually his ears can fall off and/or his eyes can come out.

He could definitely use good thoughts, positive vibes and prayers.

I was raised by my grandparents so for me its really difficult he is more like my dad then a grandpa :( My heart really hurts for him right now.

Thanks ladies


11-03-2011, 07:47 AM
Amy I am so sorry to hear this. It breaks my heart for you. I will pray for your family. I hope your grandpa get better and is not so much pain.

11-10-2011, 08:53 PM
Sorry to hear about this. I'll keep your family in prayers.

Amy Jacobs
11-11-2011, 08:47 AM
Thanks ladies!

It horrible hes still in ICU the burn unit my mom is a nurse she flew up there Monday Luckily because Wednesday my grams had really bad cramps turned out her lower intestine ruptured (OMG) so shes also in the hospital. My mom called yesterday really upset (I think she was more drained and stressed) she has not slept much since her arrival and now she has to go between 2 hospitals to be there for both. Shes asking her siblings to come and help :( its just really sad and when it rains it definitely pours.

ginseng mom
11-12-2011, 07:09 AM
I pray that a wall of strength and comfort surrounds you and your family. I pray in your season of anguish that the collective force of love brings you peace....

11-12-2011, 07:48 AM
So sorry you are going through this.

Phyllis J. Smith
11-12-2011, 07:53 AM
It's very difficult to see anyone suffer let alone your family. you will be in my thoughts and prayers...

11-12-2011, 12:20 PM
I am so sorry to hear about this Amy. {{hugs}}.

Amy Jacobs
11-12-2011, 01:37 PM
aww thanks ladies :)

My grams is doing well she should be coming home the end of next week my mom said shes real weak from surgery they had to take some of her larger intestine for her lower intestine. As far as my grandpa I just dont know when he will make it home yet :( they did a biopsy to check his skin yesterday and are awaiting blood results to see what stage the cancer is in.. Its very frustrating the drs are not really giving us or him much info right now. He keeps asking them questions with not much response. They (the hospital) had a counselor come talk to him about how hes feeling with all this.

I am not sure what that means..To be continued.

Thanks for your support!

Your guys are the best! ~Amy

11-12-2011, 01:46 PM
Wow Amy, I'm so sorry!

I will keep you and your grandparents in my prayers! <3 I lost my Papa to cancer 5 years ago and my Nanny has Alzheimers now and I am very close with them so I know how hard it can be to see a loved one ill, especially when dealing with cancer...it's just devastating.

When you are dealing with cancer you have to stay on top of the hospital..they will make mistakes if you don't. Start keeping a journal on him and write down everything the Doctors and Nurses say and everything on his charts! You will need it! Then you can use it to make sure they are not all doing different things and you can use it to reference information online like at Sloan Kettering and Texas. etc...

Praying for Grandpa!


11-12-2011, 06:46 PM
So sorry your family is going through this, Amy. Thoughts & prayers are being sent your way. I've never head of that condition. :( I used to live not too far from Valrico My family had a similar situation with 2 close members very ill at the same time. It was so exhausting on them. Prayers for everyone's strength during this time!

Take care,

Amy Jacobs
11-13-2011, 09:50 AM
my mom just called the Drs told her they dont see my grandpa coming home from the hospital :( and now my grams is going backwards (talking like shes ready to let go) I hope shes not .. My mom worked it out with her siblings they will each take turns coming to stay and see them until February (so they have more 1 on one time)

My grams is in Brandon hospital my grandpa is in Tampa. Its just heartbreaking...

I appreciate all your good thoughts :) ~Amy

11-13-2011, 11:24 AM
Hi Amy,

I happen to be in Brandon visiting my son. If there is anything I can do...provide ride to airport...etc Let me know.


11-14-2011, 07:41 PM
I've hear of Steven-Johnsons Syndrome but I don't know much of the pathophysiology of the disease.

Anyhow, my prayers are for you Amy. May your father be blessed with grace and mercy from our Heavenly Father.

11-17-2011, 01:13 PM
Amy, there is a Stevens Johnson Syndrome foundation that has tons of good information.

I cant post the URL as this is my first post, but it is wwwDOTsjsupportDOTorg

I wish the best for you and your grandfather.