Donations

Thanks to everyone who has asked....
if you would like to do something in lieu of flowers, my father always supported the cause
Doctors Without Borders
www.doctorswithoutborders.org

By phone:
Call our toll-free number at 1-888-392-0392 begin_of_the_skype_highlighting 1-888-392-0392 end_of_the_skype_highlighting
24 hours a day, 7 days a week

By mail:
Doctors Without Borders USA
PO Box 5030
Hagerstown, MD 21741

We appreciate all of your thoughts.

Kristi

An amazing man, never to be forgotten

I think most of you know the news by now, but my dad passed away this morning around 1am. It has been a crazy rollercoaster of ups and downs and finally, after pneumonia attacked his lungs, his body gave up. We knew he didn't want to live like that anymore, he made that perfectly clear. But none of us were ready to say goodbye quite yet. We are having an autopsy done so we'll have some closure and hopefully know what really happened.

it happened very suddenly - nick, me and Samantha were driving to Florida for our yearly vacation (one that my parents treated us and was supposed to be the whole family, and couldn't come). My dad had been stable so we were going to aim for some R & R and take it one day at a time to see how he was doing. We got a call 3 hrs into our trip that he stopped breathing on his own, was on a respirator, and we needed to get home. We drove back to the airport, repacked, handed bailey off to great friends lauren and Kyle and boarded a plane. Samantha must have sensed our tension as she didn't sleep one wink!

upon arrival, we learned that my dad was staying alive, waiting for me to see him. nick and I arrived at his bedside, with him on a respirator and lots of IV fluids to keep him comfortable. I assured him it was okay to let go. All of his organs were failing and he couldn't do it anymore. My mom's friend Lynda sat by his bedside the entire time and he finally let go early in the morning. It was so painful to watch. We know he's in a better place free of doctors, needle sticks, IVs, and poor medical care.

There has been an outpouring of people who have called, emailed, and facebooked. it's unbelievable all the people who care. I knew what an amazing man my father was and see now how much he truly impacted other people. My dad was a genuine man who always put others first, always had a story to share, a smile on his face, and a word of wisdom to share. He'd write things in his black book to remember the little things that would make a person's day. He was an inspiring father and husband to my mom, a great travel companion, and a loving grandpop to his only granddaughter, Samantha. He loved his family more than life.

There's so much more to say, but we are all so sleep deprived that my pillow is calling. We've had vistors all day helping us get through these hard times. We have enough food to keep our bellys full for a few days!

my mom's ok at this moment... she's still in funeral planning mode and i don't think it's quite hit any of us for real.

We're having a memorial service on Thursday -
10-11 visitation
11-12 memorial service
These will be held at Prince of Peace Lutheran Church
61 E Route 70
Marlton, NJ 08053-1749

After, we will have a luncheon at Marco's at Indian Spring Country Club at
115 South Elmwood Rd., Marlton, NJ 08053

Thanks for everyone's prayers and well wishes. We know he heard them all and knows how much he will be missed.

We love you dad and will never forget you.

Kristi

when it rains, it pours

I wish I had better news to report. I think a black cloud has been looming over the world in general in 2010. When i tell people about my dad, it seems like everyone has a story of something bad happening in their family. Whether it be cancer, miscarriages, premature births, heart attack, or whatever else bad there is, , many people seem to be struggling to get through some rough times. Depressing. What is happening?

So, I have bad news once again. My dad was in Marlton Rehab, doing well. Of course after 2 days off IV steroids, he began to go downhill once again. His body can only improve with IV steroids. No one seems to know why. So, he was on his way to discharge despite his improvement followed by a downward spiral.... when he spiked a fever! Of course, right? so fortunately the ER is right next to the rehab hospital. He was whisked away and admitted to the ICU at Virtua with.... PNEUMONIA!!!! seriously? yes, he must have caught it somehow with his already compromised immune system. He's been completely wiped out on lots of IV antibiotics and hopefully today will be a better day. They also started him on IV steroids again, so we may see change in his mental state for the better today too.

I'm in GA but Dave is home with my mom in NJ. The plan of action is to have him transported to Mass General when he's stable. We're over Trenton as they have no idea what to do next and Mass Gen is ranked the #2 hospital for neuro. Johns Hopkins is #1, but since Dave lives so close , my mom will have someone nearby and somewhere to stay. (sorry Gwen - have lots of wine on hand! Ha!) Not sure when, but hopefully sooner than later. We are hoping for them to do a brain biopsy if they can't figure it out with his previous tests.

My mom's been laying low with phone calls and such as every time she repeats the story it's harder and harder. She's an emotional wreck as expected. The doctor said they don't know if my dad will ever get back to normal, but i don't believe that. We're too much of a fighting family to give up that easily! and that stubborn Italian in my dad.. not sure if that is for the better or worse.

Please keep us in your prayers and I'll try my best to update more regularly. My mom needs to get out and be with people to keep her mind off of my dad at night, so any invitation out is appreciated and helpful for me to know she's in good hands as I can't be there with her. Martinis are always welcome, as is conversation aside from the topic of my dad's health. Thanks to everyone who has already reached out. It means the world to us.

kristi

Rocking out at Marlton Rehab

This picture is when we snuck Samantha into the hospital. The nurses let us bring her up a back elevator and slip into the room. She made his day!

Sorry for the delay in posting.. time got away from me! My dad was discharged to Marlton Rehab on Tuesday and has been doing well there. He has one more day of IV steroids and will then be put on a higher dose of oral steroids. They are going to keep him on that dose for awhile before weaning him. the docs are also going to do a brain biopsy in mid September just to make sure they're on the right track still. I'm not sure when a repeat MRI will be. They're going to give it some time, too, to see if the plasmapheresis worked.

At rehab, he's getting OT, PT and speech. Hopefully he'll be out of there by mid next week and then he'll be off to FLORIDA!!! Whoo hoo! It's looking promising right now that we'll all be a family in Santa Rosa Beach to celebrate my big 32nd birthday, Samantha's 8 month birthday, and a happy family together hopefully in good health.

He'd love visitors at Marlton, so if you're in the area, stop on by. He still has some frustration with in depth conversation and word finding, but it's improving every day. Just come with some patience!

My babysitter sent me this picture when I was away. What a great smile! And no more Ms. Scherree.... oh the story there. Ms. Whitney is watching Sam until mid Sept when Ms. Sarah will come on permanently.

Thanks for all your phone calls and emails!

Kristi

Wow... unbelievable positive change today!

Okay, you all are going to think we're crazy when you see these pictures! it's unbelievable how different my dad is today. He's carrying on conversation, walking down the hallway, going up and down small steps, feeding himself, and is so much more alert, awake and aware. It's so joyous!

It's the IV steroids at work. Unfortunately, they can't keep him on these so they'll probably still do the bioposy. We'll know more today when the doctor comes in.

Enjoy these photos. We sure are happy! I have some videos but they aren't uploading like I want them to. He went from not even being able to walk to being up.

To hell and back....

I hope that someday very soon I will be able to have some great news to report... unfortunately, that day is not today.

I'm back in NJ visiting my mom and dad. I was planning to come on Friday but after talking to dad on Tuesday, I quickly changed that plan and flew home first that I could on Wed. He was very confused and had a very hard time talking to me. Despite my mom telling me, i guess I had to hear it for myself. Wow.

So he's undergoing plasmapheresis which exhausts his system but we're hoping will help in the long run. there's no way to tell. My mom and i have been spending the days at the hospital with my dad where he can hardly walk and hardly talk anymore. It's so sad and depressing for us, but so incredibly frustrating for him. He understands what we're saying but cant put the words together to tell us what he wants. His lip quivers and i think he's going to cry, but instead, he curses. He's so upset and has asked when his brain will get better. It is absolutely heartbreaking.

they finally started him back on IV steroids last night. The reason they're so hesitant to keep him on the steroids is that they deplete his immune system so much and paired with the plasmapheresis, his immune system is already compromised! But it seems to be the only thing that works to help him get a little better, so they went with it. He was a little better today than yesterday which was reassuring, but not significant enough.

the most upsetting part of our night came around 830 this evening. They repeated his MRI this morning and this evening the results came back that there are more new lesions! This is unbelievable! How can there be more? It's supposed to be getting better?

the doctor is completely dumbfounded... this is not like any other case seen and no one seems to know what is going on. The doctor said he is going to consult with another doctor and get her opinion to see if there's anything missing. Also, he recommended a brain biopsy to test the lesions. Of course, all of this is so risky with his already compromised immune system, but what other choices do we have?

I'm going to extend my trip and Dave gets home from Belgium Sunday. He has no idea any of this has happened. nick is graciously flying Samantha here tomorrow by himself. he's so great! and then i will stay until we have a better idea as to what is happening.

I will try my best to keep the blog updated but it's sometimes hard after a day at the hospital. My brain's drained!

Keep us in your thoughts and bear with my mom.... she sometimes can't tell the story over and over and doesn't always return calls immediately! It's too emotional for all of us!

Kristi

Here are some great pics that make me smile:

Samantha lounging around..... this is the life.


My babysitter sent this to me while I was here... I light up when i see her smile.

long time...

Hey everyone! I am sorry it's been so long since the last post. That's what happens when you juggle a little too much. I am writing a quick note to update you on the status of my father and then will make a Samantha 7 month update when i'm on the computer with all the pictures!

Ok... this has been the worst rollercoaster ride we've ever been on and it continues to thrash us all over the place. To summarize a few weeks of hell, my dad's back in the hospital in Trenton... he was doing fairly well at home, and seemed to be making some progress in the right direction. However, any time they tried to reduce the steroids to work towards weaning, he would lose everything he had gained and would have to go back on the higher dose. they repeated the MRI two fridays ago and learned that the spots on his brain have NOT gotten smaller or gone away. So.... it's seeming like he's suffering an auto-immune disease where his body is fighting itself and is not getting better.
They readmitted him to the hospital to undergo plasmapheresis www.mdausa.org/publications/fa-plasmaph.html, pretty much cleaning his blood and putting clean blood into his body. it's a 5 series process, every other day, so he's back in for a minimum of 10 days. He went back in on thursday i think. well....

since he's been in the hospital he's completely gone downhill. He's having a hard time with everything! My mom's a basket case and it seems like no one knows what is going on.

i'm going to head home Thursday to be with my mom and dad.. she needs a break from the hospital trip and needs someone to drink wine with i guess! :) i'm going to leave Samantha with nick again as he did such a great job last time.

Please keep us in your thoughts. It's been the craziest last 2 months and i just hope my dad can make it on our beach vacation at the end of the month so we can all be together as a family. Keep your fingers crossed!

Kristi