Morning update

5:15 a,m.
Stephen had an "OK" night. He is such a good patient, even though he has a fever, is itchy and his pain is somewhat controlled with a pump. He has been asking for me to tell him again about what happened. He was very upset last night when the doctors told him and is disappointed and worried about Alison but I keep telling him that we are so grateful that he is "OK". We are so very proud of him, he is still our hero-what an amazing son we have. Alison is very worried about her brother, feeling guilty that he is going through this. As always, keep them both in your prayers.
Love, Karen

Update-3 p.m.

I want to start out by saying thank you to all for your ongoing prayers, thoughts and support. I then want to tell you that Stephen and Alison are "OK". Unfortunately, however, Stephen went into surgery this morning and it was determined that he could not be Alison's donor. His surgery was well underway and at this point, we are just very grateful that Stephen, although in a great deal of pain, is not in any imminent danger. He has been in recovery for several hours and it appears that they are beginning to get his pain under control. Once that happens, he will be moved to ICU. As you can imagine, we are all devastated. Most especially, Alison. I know I do not need to ask but please continue to keep my children and my husband in your prayers. We can all use your prayers right now.
Love,
Karen

Update from the Big Sis

Hi everyone! Thank you so much for your support.

We have been at the hospital since 6:00am. I don't think I have been up this early in months! :) Stephen went into surgery at 7 and will not get out till around 4 or so. Alison is still waiting, she will hopefully be going in shortly. This has been an emotional day so far (a few tears) but we know great things will come and we can't wait!!

We will keep you updated as soon as we know more!


JenJen <3

A Long Night

It's 3 a.m. and I am wide awake. I would have written sooner but I had to check my "cheat sheet" to remember how to post a message. Internet savvy I am not. Then after I typed my message, the internet failed-go figure. Alison is sound asleep, thank God. I hope Stephen, Joe and Jennifer are too. For those of you who are parents, you know that waking in the middle of the night and worrying about your children, "comes with the territory". I can't tell you how many nights, I have done that. I have had many a night, that I would lie in bed asking God to keep them safe. When they are all home from school, I would wake up and check their beds to make sure that they are home safe and sound-and thank God they always were. Father Bob told me to think of the times that God has been present in all of this. I have given that a lot of thought this week and God has been present many times over this long journey. And just today, God' presence was felt in the kindness of two groups of people. A very nice man from St. Pius who works here at Yale called me and offered meal and parking passes and then our new friend, Jeff Aglie (a liver donor for his brother in law) brought a beautiful basket from he, his wife and the Donahues. It was filled with good wishes, prayers and things that only a family "who has been there" would know to give-we have been very touched by their kindness. It is through new friends and old and our precious families that Joe and I and our children know that God has been and will continue to be with us each step of the way.

The Parent Perspective

So Joe and I thought that we were given the ultimate test as a "tag team" when we were blessed with twins but little did we know.........The day has certainly been full starting with Alison and I being dropped off at admitting and Stephen and Joe venturing to the transplant clinic. After several appts. for Stephen we were back together for a short time, then more tests for Alison and appts. for Stephen. Finally, the "boys" left and Alison was sound asleep. The evening flew by with phone calls, more visits from doctors and a "little" scare that called for a cat scan-scare averted and now it's time to settle down for the night. Alison got a little "help" to sleep, we'll see how the mom does. I pray my "boys" will get a good night's sleep. I hope my JenJen will too. It's so hard to not be able to all be together. The morning can't come soon enough. Thank you all for your thoughts, good wishes and most importantly, your prayers.
Love, Karen

Pretransplant Post 3

Okay...i'm bored. I came in here at 9:30 this morning. I have gotten bloodwork, a chest x-ray, and an abdominal ultrasound. And...here we are. I'm sitting in bed and doctors that I've never seen before keep popping their heads in and out. Tomorrow Stephen will get to the hospital at 6am. They will probably start surgery on him between 7 and 730. Surgery on me will start sometime between 9 and 11? I have learned not to get my head set on times because you never know whats going to happen. I can eat today, but they won't let Stephen, so that sucks :(.

So here is how my weekend went:
I got formally initiated into my sorority. I and my 45 sisters are now the founding sisters of the Iota Nu chapter of Phi Sigma Sigma.
The Pioneer Pull went pretty well. Despite it being cold and windy, a good amount of people still came out to support me, so I appreciate that.
My friends and I went out to dinner afterward, and it was nice having that time with them.
Sunday was my Phi Sigma Sigma family luncheon which was wonderful, but I had to stay "see you later" to all my sisters which was extremely hard.
Sunday night was hard as well as I had to say "see you later" to a few of my SHU friends.

Now we are just waiting on tomorrow. I hope I can get some sleep tonight. I am so nervous and anxious and just want to get this over with. Some of my friends are coming to be with me tomorrow morning before the surgery which I am looking forward to and really appreciate. Other family members are coming later one, but I'm not sure when.

Thanks again for everyones' support. It has meant a lot to not only myself and Stephen, but to our entire family. Please keep us in your prayers and keep checking back for updates from my mom to let you know how things are going throughout surgery and beyond.

Love you all.

Pretransplant Post 2

So, its official...the transplant is April 7th. It is finally becoming real. After 10 family members and friends were determined ineligible, the doctors went back to Stephen, My amazing, selfless brother is giving me the gift the keeps on living. He is my second chance at life and I am so appreciative for him and everyone that has gotten tested for me. I don't know what I would do without my family and friends.
Here is some information about the surgery and things happening before and after it. There are a lot of things that are opposite before, during, and after surgery for Stephen and me. Hopefully these things are helpful...
1. I will be admitted on Monday, April 6th for testing and prep before surgery
2. Stephen has to go in for testing on Monday, but won't be admitted until Tuesday morning.
3. Stephen's surgery will start at about 7am on Tuesday morning.
4. A few hours after his surgery, around 9 or 10, they will take me in to start my surgery.
5. Stephen's surgery should last about 6 hours
6. My surgery should last about 10 hours
7. The doctor and members of the transplant team will come out to update anyone who is in the waiting room during the surgery.
8. After surgery, I will be kept unconscious with a breathing tube until at least Thursday, possibly longer.
9. Stephen will be woken up soon after surgery.
10. I will be in the ICU for 2-4 days.
11. Stephen will be in the ICU for 2 days.
12. I will be in pediatrics, Stephen will be in adult.
13. I am not allowed to have visitors until 10 days after surgery. My parents and Jen can see me if they wear gowns, masks, and gloves when they come in.
14. Soon after surgery, they will want both Stephen and me to get up and walk around. We will be going through some physical therapy in the hospital that helps us do simple tasks to make living at home easier.
15. Stephen will be in the hospital for 5-7 days total.
16. I will be in the hospital for probably 14 days.
17. Stephen will be living home for a month, and then gets to go back to living in NY!
18. My recovery will be about 3 months and I shouldn't be in big groups of people for a very long time.
19. Both Stephen and I will have to go back to the hospital a couple times a week at the beginning to check how we are doing after we are discharged from the hospital.

We got a lot of information tonight at the meeting we had with the transplant team. They were very reassuring and helpful that they would do everything in their power to keep us safe and make sure things go as well as possible. Please keep myself, Stephen, Jen and my parents in your prayers during this undertaking.

I love you all so much and thank you for all your support.

Make sure to comment back on this page so others can read it and I can too! When I am feeling better, I can respond. In the meantime, my mom and Jen might be posting things to keep everyone updated. This is definitely a much easier way to inform everyone of what is going on so my mom doesn't lose her voice explaining the story a bunch of times (though maybe we should have her do that...hahaha!) JUST KIDDING!

Check in daily for updates! <3