The trip to Texas was awesome. Kristy and I had a great time together at my brothers house eating his food and lounging by his pool. We unfortunately brought Michigan weather with us, because the entire time we were there it rained on and off and the temperature never got above 75.
We brought the wheel chair with us, which Kristy wasn't thrilled about, but it ended up being handy when she did eventually run out of steam. It also was nice for carrying luggage at the airport.
We were a little worried about the metal rod in her leg setting off the medal detectors, but she walked right through without a problem. The flight there and back was nice. On the way there I had someone just a little too big for their seat sitting next to me, but since I had Kristy on my other side it was easy to just lean on her for support.
The first night there we went to a Rodeo and laughed at all of the cowboys in their pink shirts (I guess pink is in now). At the end of the night Kristy was tired so I wheeled her back to the car.
The next day Kristy slept the entire day. She woke up once around 2pm and had something to eat, and then went back to bed. She woke up around 7 and had something to eat, and then slept until the next day.
My brother and I were a little worried, but the next day she told us it was just the fact that she didn't take her steroids on the weekends that made her so tired. That and the fact that between the airport and the rodeo she had had a very active day to wear her out.
We went out to eat and had steaks. Went to the movies and saw "Semi-Pro". We loved it and laughed so loud other people must have had difficulty hearing the movie.
My brother took us on a tour of the high tech chemical plant he manages. Things there are so .... intense ... that Kristy and I had to watch a movie, promise not to take pictures, and put on a hazard suit to see the plant.
Just recently Kristy drove for the first time in four years. She only got a little lost (she always gets lost), but health wise she's doing pretty good. She still has her good and bad days, but overall she's better.
Thanks so much everyone for your thoughts and prayers. I will update again soon. No really, I mean it this time.
Thanks again,
The Dusseau Family.
Special thanks to Cheryl Paulson. Our prayers and hearts go out to your great niece on her recovery.
03-09-08
Kristy and I are going on a trip next weekend to visit my brother in Texas. She still won't let me film her because they still have her on the heavy steroids.
Slowly but surely she's been getting better, though. I believe.
Hopefully I'll get another film of her soon, at least some pictures of this trip we're taking.
Thanks everyone for your thoughts and prayers,
Rob
01-26-08
I'm sorry the owner of my company swears so much. I've marked out the swearing.
and from the guest book:
"..I had been anxiously waiting for over a month, and what did I get? 5 paragraphs about you whining quitting smoking.Are you glad to have that second chance? Do you think she would like a second chance? You are dealing with something as ugly as smoking; Kristy is fighting for her life. The only news you have to share about her is less than two paragraphs! Get you own blog...."
This is my own blog, but you are right. I'm a little angry at Kristy as of late, but I'm sure I'll get over it. She's been doing "okay" lately. It's hard to say how she feels when you have to compare it with how she felt in the past. If YOU felt like she did, I would say that you were feeling AWFUL, but in Kristy's world, she's doing GREAT, so words betray me. One of her biggest worries is that she is going to feel this way for the rest of her life. The doctors assure her that she will get better, but they won't say when. It's just a matter riding it out I guess.
She had a fall recently that was kind of strange. She was going to the hospital to visit one of my father's friends, and as she was walking up to the door she suddenly fell and hit her face on the cement. My father asked her what she had tripped over and she said "nothing". She just suddenly lost her strength.
The hospital was concerned that we might sue them, so they sent a security guard to question her, but no medical aid was given (note - this wasn't MSU). She turned a little black and blue, but is okay.
Currently I'm looking to book a trip down to Texas with her to visit my brother. I'm really looking forward to it, and I believe Kristy is to. I plan to do a lot of filming, but I'm not certain if Kristy will be in front of the camera or not. Maybe I should hand the camera to her.
Thanks for putting up with me, and thanks for your thoughts and prayers,
Rob
01-19-08
I've been gone so long for this. The owner of my company, he happen to have seen this site, and where I work in the worryisome, stessfull, geeky IT field, he said to me, "Youre sister's got f*kn cancer, and you're f*kn smokin? Don't ya see what's wrong with that?" He looked at me like I was crazy as he said all of that, and he said it with a britsh accent, and so I was struck. But it doesn't matter what accent you put it in, the owner of the company that I work for was looking at me like I was a dumb ass, and that's enough to make anyone want to reconsider smoking ... and that, for some reason, put it all together for me at once, and I quit.
Now keep in mind, I've been smoking since I was 15, so doing this was incredibly hard for me to do at age 37. I didn't talk to anyone at all. I lost contact with everyone I loved and gritted my teeth. I even had a childhood friend Tommy Jackson contact me through this site and I wouldn't call him back. His timing was ironic, but I was just going through something that was rough, and I wouldn't have been the best of conversation.
But the very fact that you're reading these words means I've made it through it. I smoked nearly two packs of cigarettes a day, and as I type this it's been two months since the last time I've smoked a cigarette, and not in any way, have I touched it at all. I quite November 20, and going through the holidays without smoking was tough, but I made it through it.
So all through this wonderful recovery of mine, what was kristy going through?
Major steroids, keeps her from stepping forward in life at the moment, but as she gains strength she will power her way through this as well. She's not been happy with the effects of the steroids, so we need to give her a little space for the present time. I dropped the camera for a while.
She has to respond to this post to keep me from posting the video I took of her.
That's right Kristy!
You standing up?
Rob
11-23-07
Hey guys! I just spent a few days with Kristy and she's doing well. She's even allowed to drive now! (something I wouldn't have recommended even before the illness). Her last blood counts were considered the "best they've ever seen", and she's only required to visit the hospital once a month now.
So things in general are looking up! Her mood I would call shaky, but I'm fairly confident her new life is about to begin.
She's still not up for the camera, but once she is I'll get some footage to you guys.
Thanks for your thoughts and prayers,
Rob
10-27-07
Were back up again, sorry the site was down for a few days there, I had to switch our hosting from the "Ultra expensive" to the "Ultra cheap" plan due to lack of traffic. You shouldn't notice any difference at all, but it took a while for me to copy everything over here.
When I went down to see her last Sunday she most certainly DID NOT want me to film her at all. They'd increased her steroids and it was having an effect on her face, so no dice. The small amount I did capture as I walked in the door I promised to have burned and it's ashes sprinkeled into the huron river.
They've lowered the amount twice since then (which always makes her really tired), and while I was there she fell asleep several times while sitting up. I'd love to tell you it was because they lowered her meds, but we all know that it was my charming personality that really put her to sleep. She progressing and getting stronger again, so I'm sure it won't be long before I can catch her on video without getting the "you better not post that" look.
Thanks everyone for your thoughts and prayers,
Rob
10-20-07
She got out about a week ago. The last time I talked to her, she was crying a lot because they increased her steroids and other medications she had to take outside of the hospital. She told me that whenever she goes anywhere she has to bring an entire pharmacy with her.
I bestowed upon her as best I could how confident I feel about her pulling through this and being happy again. I honestly FEEL it, more than blind faith, it's like when you feel it's about to rain.
Yesterday she fell and hurt her leg. Now she's back at mom and dads with crutches and the old strap on leg cast she used to wear. My dad has been calling her the bionic women because she had her leg bone replaced with a metal. He told me he was surprised. The metal rod thing isn't very tough at all.
So finally, now that I'm over that cold, I'm heading down to see her tomorrow.
Maybe I'll take the camera. I don't know. When she's feeling rough I don't like to stick a camera in her face.
10-7-07
Well it turns out I was dead wrong about Kristy's getting out. She's still in the hospital right now recovering from the surgery to close up the wound left behind by her feeding tube. I guess since they've removed the tube (a week or two ago) her skin keeps breaking apart where it used to be. They've cauterized it, stitched it, stabled it, you name it trying to heal it back together.
I'll let you guys know when she's out.
I finally got the latest movie together. You can see it over there on the right. I thought it was pretty dull so I added some music to jazz it up a bit. This was taken last august at one of her stays in hospital.
Very busy, get back with you guys soon.
Thanks for your thoughts and prayers,
Rob
10-4-07
Hello everyone. Thanks for your patience. Yet another stay in the hospital. This one was a little scary.
You see I had everything figured out. Last Friday night Kristy was to accompany friends and siblings to a classy comedy club here in Michigan called Joey's. It might not sound fancy, I know, but it's actually a really nice place as far as comedy clubs go. There was ten of us in total going, and Thursday night I called to surprise her with the news.
She sounded tired, but very happy to be going. Dad and I worked out how I was going to go about getting her to the club, and I took a half day off of work just to make sure I could get her in time to make it.
Friday morning she had one of her regular check-ups at the hospital, and around noon my father called to tell me she had been omitted.
"There's something wrong with her lungs. They think she might have some kind of virus. Kristy was really upset about it because you know they don't do anything on the weekends. They're worried that the Graft vs Host might have come back in her lungs ... which would be really bad"
"But I thought Kristy was doing great?"
"She has been getting weaker over the past few days. She's only able to stay awake for about four hours at a time now. The doctors want to put her out and fill her lungs with fluid. After that I guess they take it back out and study it."
I was really bummed, worried, and angry all at the same time. Needless to say I didn't have the greatest attitude that night. The comedians only got a faint smile from me.
So the weekend went by with nothing being done. Dad reported Kristy seemed stronger, but suspected the drugs had something to do with that.
I started to worry about her. It was a fresh worry, something I had buried deep into the back of my mind had resurfaced again. If it was Graft vs Host, and it was in her lungs, that's something that would take her out quickly.
Monday they were late with the test, as was the norm, and the next day I tried calling my father to hear the results, but his cell phone was off. And no one answered the house phone. I called every hour or so, with each call implanting another terrible image into my head. Maybe they had the phone off and weren't answering because they got some terrible news. Maybe something happen to Kristy last night and they were too upset to talk to anyone. Maybe -
She was fine. It's just a virus, not the Graft vs Host, she's going to be okay. She may have gotten out of the hospital today, if not tomorrow for sure.
If you're reading this mom and dad, don't do that again.
And Kristy, if you're reading this, you're a very loving person, and everyone loves you very much, but you need to stop hugging and kissing people. I know it's hard to do, but people are walking nests of viruses, and until your immunity gets stronger, maybe you should tell people to back off a bit.
Because you and I ARE going on that plane trip to Texas this winter to visit Kenny. Mark my words.
Thanks everyone for your thoughts and prayers,
working on the video now, but it's a dull one, so be warned.
Rob
8-13-07
This morning Kristy was discharged from the hospital and was home soon after eating lunch. I spent the day before with filming while we walked around the hospital and talked. She's looking better.
I'll try and get to the footage this weekend, but I may need a week or two.
Sorry I have to go now.
Thanks everyone for your thoughts and prayers.
Rob
8-8-07
She's back in the hospital again I'm sorry to report. Yesterday she was in a lot of pain and couldn't stop throwing up so my parents brought her in to the emergency room. After a 7 hour wait they booked her back onto her old floor again. Level 7, Motts children's hospital.
The day before that she had been there for one of her checkups. She had been very weak from her recent steroid reduction, but was looking good over all. Since they had a little extra time, Kristy and my parents decided to pay a visit to the cancer ward and say hi to the nurses.
Everyone was happy to see her, but after a hug one nurse said to her, "You better watch it, Kristy. So and So was up here the other day to say hi, and now she's back here again."
The nurse knocked on some wood and smiled.
And the very next day Kristy was back in there again.
Although my father believes she must have contracted something from that floor, the doctors believe her Graft vs Host is back again, and they believe that's because of their reducing her steroids. Now they're going to increase them again and see if it goes away.
Regardless of the facts, I highly doubt she will be paying them a friendly visit any time soon. Emails and phone calls from here on out, just in case.
She's very depressed, and heavily drugged I'm told, for the pain. The doctors tell her it shouldn't be long before she's out again, but as we approach Friday we know she'll be there until at least monday.
So I'm canceling any work or plans that I had, dusting off the old camera, and heading out there this sunday.
Thanks everyone for your thoughts and prayers.
And an especially big thanks to "The Mighty Favog" who has been keeping a blog for Kristy right Here called "Keeping Track of Kristy". It's a really wonderful thing this guy has done. I don't know how to thank you, but THANK YOU!
Rob
7-7-07
I am so sorry. I hadn't even spoken to Kristy in about three weeks, when I finally ran into her at my brothers farewell BBQ party a few days ago. It turns out she reads the guest book here most every other day, and you guys have been chatting and getting increasingly more upset with me.
In a nutshell, I come home, I eat, workout, get the kids to bed, watch an hour or two of TV, and then fall asleep (usually on the sofa). I want to get up and do things. I want to work on my movies, play videogames, talk to my friends, play with the kids, but I'm just so damn tired I can't even do the things I LIKE, much less the growing list of things I HAVE TO DO.
At work I'm in what's called a CRUNCH. It's what the end of a software development cycle is called. This is the worse I've ever seen. We've developed a custom handheld computer that will be doing our business for us in countries all over the world. Zillions of dollars, my job, and the actual fate of the company's future are on the line. If this project fails badly enough it could actually go out of business. So it's not just me losing my job, EVERYONE could.
So it's been stressful. Right now we're in the eye of the hurricane. We just shipped 50,000 of the devices out into the world, so the wave of phone calls and problems should hit next week. I'm getting more stressed just typing about it. So I may disappear again.
But I will be back. I haven't forgotten my commitments. Worse case scenario, there will be a movie of her getting her own place, by any means. That goal will be reached. Others with this site have not, I know, but I've invested an insane amount of time into all of this, so I will reach that goal. But I'm just a one man fundraiser people.
Health wise Kristy's has been doing really well. She's gained some weight and is actually starting to look like she's growing YOUNGER. That's good to see. She still has the feeding tube, but she's gone from using it 20 hours a day to once every 5 days. It leaks all of the time, whether it's being used or not, and has ruined lots of her clothing.
She sleeps a lot, gets tired after being up and around for a few hours, and has good and bad days. They've recently cut back on her steroids (she's thrilled about that), which has had her feeling ill lately as she tries to adjust to it.
Her fiancé .... well ... let's say he's fallen off a cliff, which is what Kristy would tell you if you asked her. I'm not one to judge. Really, it's something I just don't do for spiritual reasons, but that guy turned out to be a bum. His commitment to her during the first half of her illness was very commendable, and it won't be forgotten by this writer, but the guy turned into a leach onto Kristy and my family. Living with my parents, disappearing for days, drunk and disorderly all of the time, enough said about that, there's many other things but what's the point? The guy is hopefully gone for good now.
Kristy I know you really cared for Greg, but your roads have taken drastically different directions, and what he became on his path wasn't good for you. Your future spouse will be good for you, trust me on that.
Emotionally Kristy's been upset. I never reached my goal of raising enough money to purchase her a condo (which would have meant she would be eligible for a nurse). So she's living at home with mom as her nurse. That's tough on both parties involved, because of where they are in their perspective lives.
Her self image is in the gutter. Silly as it may seem, she actually thinks the fact that she can't have children will make her undesirable to men. I chuckled a bit when she told me that with tears in her eyes, and assured her that it wouldn't be a problem. Especially with men. It might be more of a problem if she were a man, but she's a very pretty young lady, and the idea of adopting makes her concern a mute one.
There's many other emotional hurdles she's climbing over right now, and she's climbing them, but I wouldn't be much help with that. I don't know what's it's like to go through something like she has. She told me she was checking out planetcancer.com and talking to people, and I hope she's still doing that. I was actually hoping she would take over this site, but that just didn't happen. She's not much of a computer fan like her brother is.
Okay, I've got to get back to work. I'm sorry I've been gone lately. I honestly didn't think that anyone was still visiting. I'm going to get another movie going with Kristy as soon as I can.
Thank you for your continued support,
Rob
5-19-07
Busy Busy. The dust has got to settle at work here sometime soon. My company has been flying me around and keeping me tethered to a black berry lately. So just getting off the sofa after work has been difficult.
Kristy continues to slowly improve. I got to spend some time with her on mothers day (decided not to bring the camera, wanted to give her a break from it). As could be expected, her and my mother are seriously getting on each others nerves. I tried to get mom to tell me what the problem was and she refused to tell me. She just changed the subject. Kristy had plenty to say, but since both parties are probably going to read this I don't want to get into details.
Just .... stop and do something else.
I feel for everyone involved, but there's nothing I can do about it at the moment.
Her Fiance is there, but gone again, but there, and gone again. I'm not sure what to think of it. He seems to be avoiding me (and my camera) like the plague, so I don't bring him up anymore to her. That's her business.
The movie looks like it's going to be late. Again I'm sorry, but it will be made ASAP, I promise you that.
Thanks for all your thoughts and prayers, I will be back soon.
Rob
5-02-07
I just talked with my father. He called to tell me that another $300 in donations had come in the mail, and that he was hoping the news would cheer me up a little because I'd seemed down about the whole "thing" recently. I reassured him that it was just work killing me lately, and that I was perfectly happy with how things have turned out.
Kristy's out of the hospital getting better every day. We raised some money for a down payment on a home or school or something to help her get back into life. I call the whole thing a huge success! I believe in my heart that having people say prayers for her all around the world really made a difference.
It's a new month, so a new video is in the works. What should be do this time? Take her roller skating? (just kidding, my parents still won't let her go down stairs by herself).
Bungie jumping?
Really, just kidding, mom, relax. We'll think of something.
Like MOUNTAIN BIKING!
You better be doing your exercises, Kristy!
Rob
4-20-07
We're nearing the end of a project at work and have officially entered "Crunch mode". 12-15 hours days, weekends, little sleep, high stress. My supervisor was put in the hospital for two weeks because of a stress induced heart attack.
It's the software development biz. It's how it goes, and it's the reason I've been absent these days.
Thank you for all of the positive feedback on the movie. I try to make them as entertaining as possible, which can be difficult when there's so little drama to record. But the fact that there's no drama is great. I don't look for it. I don't enjoy showing it. She's getting better and I want to focus on that. As unexciting as it may be.
Kristy's doing well. The feeding tube is still in (the day that's removed will be a great day indeed), but good and bad days aside, she's showing no signs of going back to the hospital (knock on wood). Last time I was down there I took her with me to help film another video I was working on. She enjoyed not being in front of the camera for change and we had some fun. At the end of the day she was sad, though, because of troubles with her fiance.
She has it in her head that she's ugly and undesirable. It was the dumbest thing I'd ever heard her say. It's so dumb I know you all agree with me and don't need further explanation.
The donations completely dried up, which is fine. They are VERY appreciated. Every dime that was donated will go to where it was intended. Only lately I've been thinking that her house may be in a dorm, at college. What do you think? All of the donated money sits safely in that trust fund out of reach. My father owns the account, and he's a tax accountant that's impervious to any sort of foolish temptations. I trust that man with our money as hundreds of people do every year. He's a rock.
We may not get that condo I was hoping to get her, but we did bring her hope and love, and I believe that was the last push she needed to make it through all of this. For that I feel forever indebted to all of you. If you need me, I'll be there. I'll remain here at my post, as promised, until she has a home of her own. And I will film that home with great joy.
Thanks everyone for your thoughts and prayers,
Rob
4-15-07
I'm certainly not happy about the thumbnail picture YouTube selected to represent the movie. It's a shot of a down town Ann arbor trash can. Kristy and I were laughing at all of the energy drink / speciality coffee cups that were in it, but oh well. I think the video is rather good, but I'm bias as you might have guessed.
Those kids sitting with Kristy are all of her nieces and nephews save one five year old that had a cold that day. Anyone with a cold is well advised to stay away from her.
I'm not sure how she's doing as of late, but I'm packing up right now to go and see her. So I'll get a better picture soon.
Hope you guys enjoy the video, and as always, thanks for all of your thoughts and prayers.
Rob
4-13-07
The movie is almost done. I just need to do a little clean up work and it will be ready for viewing. I like this one a lot.
Kristy has (knock on wood) been doing really well this past week. She's starting to eat somewhat regularly, and her mood has been good as well.
You'll see. I should have the movie done tonight and up tomorrow.
4-09-07
Hi everyone! Seen Kristy yesterday and she's looking really good. I got enough video now to do the next movie so I'll be putting that together over the next few days and you can see for yourself.
She's eating more and more every day.
Thanks everyone for your thoughts and prayers. Work has been rough these past few days. I need to go lay down.
Rob
4-07-07
We are still receiving cards from all over. Someone is making Kristy's a welcome mat for her house. Thanks you guys. She's at my parents house, but still is unable to eat much of anything, and when these cards arrive in the mail they cheer her up.
I'll be going down there tomorrow to get a better picture of how she's doing.
I got an email from someone that was directed at me that I wanted to share.
This message is more for Rob than Kristy but it's okay for any of you to read it. I keep returning to the website hoping for good news and I'm very glad to hear that Kristy is out of the hospital. I work with child protective services in North Carolina and sometimes it seems like the only news coming my way is bad news about the terrible things people do to each other. I have worked with many people who have the creativity and intelligence to achieve great things but they usually don't channel their abilities in a good way. I'm just sorry that such a painful struggle is what is being documented. When Kristy fully recovers I hope the videos will continue, even if they're only for family viewing. You all deserve to have the times of great happiness recorded and preserved with the same care and love that Rob has put into Kristy's recovery. I know this endeavor wasn't undertaken with the purpose of making strangers feel better about what's going on in the world but, at least in this case, that's what has happened. Thank you.
Good Luck
Stay Strong
Randall
Thank you very much Randall!
It's rare that I get any messages with some mention of me!
I've been making video's since I was a kid. Back when they had to be plugged into the VCR, I used to save up my allowance to rent one from the video store and make break dancing movies.
Back then getting into the video biz was an impossible dream, so I went into computer programming instead. I'm doing well now as a developer, but when dvd burners became affordable I went nutty and got a camera and started making movies again.
Kristy has a small part in one of my most recent ones, a comedy horror movie called Sterling Frights (I live in sterling heights). We made it just before she got sick. I wonder if people would like to see it? Kristy has a few lines and a comical death scene in it. There's absolutely no swearing in the movie, I wouldn't allow it. I made it so grandma would like it as well.
Any ways, I've been making movies as a hobby over the past few years, and once Kristy got better (trust me, these videos all show her recovered, no one wanted to record when she was bad) she had become very depressed. Dr. Cooke told me this depression was holding her back physically as well as mentally. It was keeping her in the hospital.
That's when I thought of trying to get her a house.
When someone close to you almost dies you want to do anything you can to help, but 99.9% of the time there's nothing you can do but stand there and watch. I was jealous of my brother Kenny because he got to donate his bone marrow and save her freaking life! There's just no topping that!
What can I do? I program computers and make movies. So I made her a website and a movie.
Just thought I'd share a little story for people wondering how this all came about.
Thanks for your thoughts and prayers (please keep them coming! Keep her out of the hospital!)
Rob
4-04-07
Sorry so late, work again. Kristy was discharged from the hospital late Monday afternoon, and dad tells me she's looking good.
It's a new month, so I plan on getting down there Sunday to finish up the next video. I'm hoping to get Kristy's fiance Greg into this one, so he can tell his side of the story. I know he "ran off" and all of that, but up until that point he was there much more than I was. Through years of illness he watched Kristy go through more horrors than I have seen.
There was a point where it looked like she was going to die. At this point, everyone started crying around. Every family member that I talked to on the phone or in person burst into tears. Sometime after that point her fiance disappeared. I always guessed it was because he couldn't bare to watch her die. I could understand that. You would have to bear witness to what he's been through before passing judgment.
Regardless of any of that, it seems he's back in her life again, they are back together. Maybe I'll be able to catch him for the video.
Thanks for all of your thoughts and prayers,
Rob
4-01-07
We're hoping she will get out of the hospital tomorrow. She seems to be doing just "fine". Not much has happen this week, so I haven't had much to write about. It's just the waiting game again.
As I do every time she gets out, I think to myself, "That's it then, it's done. She's going to be fine". Even though I've been disappointed so many times now, I can't help but feel that way again.
Fingers crossed.
Rob
3-28-07
The next day she was out and home by 2pm. At 11pm the same day she was back in the hospital again. She just kept throwing up and was in terrible pain so my parents brought her back. They put her on adavan and some other drug I couldn't spell or pronounce correctly, but my parents are wondering why they don't have the same drugs to give her at home.
She's still in there now with no idea when she's going to be discharged again. The doctors can't figure out what's wrong with her, but they think it might just be that same infection that never really went away.
Cards and love appreciated if you've got any to send.
Rob
3-26-07
Well I got my tubes backwards. She had the tubes out of her chest removed for fear of infection, but the feeding tube in her stomach is still there and being used a lot.
Sunday when I showed up Kristy wasn't in her room. To my surprise she was already up and in the shower. She returned with a towel wrapped around her head and sort of collapsed there down to the bed.
Unable to breath.
She was gasping, "I .. can't ... breath"
Talk about panic. I jumped up (filming all of this, so you'll get to see it) and was ready to run around the hospital yelling "HELP! STAT! WE NEED SOME HELP HERE! STAT!"
But she told me (gasping) not to worry about it. I guess that happens all of the time after she takes showers.
Nothing to worry about. Breathing is so overrated.
After getting lost in down town Ann Arbor, we found the film festival, but never got in to see any films. Although I'd brought the wheelchair along with us, Kristy told me to leave it in the jeep because we could park so close to the theater. We arrived at 3pm. In the ticket window was a sign which read, "Tickets on sale at 4pm".
We tried to get in to look around at stuff, but wasn't allowed in without a ticket.
So we went a few paces down to a starbucks where we couldn't sit down (and she needed to), and finally around the corner to small Coney island. I was starving, and Kristy wanted some french fries, so ... why not. She had about five french fries. I haven't talked to her since that day, but I sure hope she didn't get sick from them. She was looking a little rough when I left.
After the Coney we went back to the theater. I looked at my cell phone, 3:50. The sign on the ticket booth had been changed to - "Tickets on sale at 4:45". I kid you not. I've got it on film. We took it as a sign.
Every since she had eaten she wasn't feeling too well, so I knew we'd never make it that long. We went in and I talked the management into letting us browse the teeshirts and stuff.
After that we sat in the lobby for a while and laughed at the funny dressed Ann Arbor people walking by.
We had fun.
She should have gotten out today. I'll call first thing in the morning tomorrow to make sure and let you know when I get home from work.
Thank you all so much for your kind messages, thoughts, and prayers.
Rob
3-24-07
Today Kristy was suppose to get out of the hospital, but at the last minute the doctors changed their mind. Fawne was ready to drive out and pick her up. Kristy had already packed up her things and was tapping her fingers waiting to leave when they gave her the news.
They took out her stomach tube yesterday, which as ugly as the thing looked Kristy actually liked it. It was much more comfortable than the alternative. The doctors believe it may have been contributing to the infection - which last time I was there was a mystrey virus. Now I guess it's a mystery infection. It's the way things tend to go with diagnosis in the hospital. During her last couple of month visit they never did figure out what was wrong her. They just kept her stable and hoped it would go away. The non stop testing process of diagnosis is not a comfortable experience, trust me.
She's very very down at getting the news, and now for some reason they're installing "picks" back into her. They're tubes that stick out of your arms. She's very upset about that because they're painful and uncomfortable to live with. I guess her stomach is still bad and that's how they're feeding her.
Tomorrow, as always, I'll be going to see her, but since they had originally planned to let her go home, I'm hoping they will let me take her on a field trip out of hospital and out to the Ann Arbor film festival. Both Kristy and I have a terrible sense of direction, so we'll probably just end up getting lost in the city and never seen again, but if you happen to be in the area look for us to be there around 3. I'll bring the camera and start filming next months video. I figure they're be lots of people there with cameras so it won't look unusual.
Oh someone sent us an e-mail reporting that their card had been returned when they sent it to the hospital. We've received some cards there, but is anyone else having problems? Let me know, I'm looking into it.
Rob
3-22-07
Sorry I haven't posted sooner, it's been nothing but long days and nights at work lately, and I haven't had anything good to report.
She's still there. A few days has turned into a week. My parents tell me it's only been a few "hospital days", because a Doctor's sense of time is apparently different than our own, you see.
The virus hasn't gone away despite the flood of antibiotics she's been on. Mom says she's been down and scared lately. She's afraid the Graft vs Host is coming back. We're all afraid of that.
I was thinking recently of shifting the money we've raised up from "Kristy's House" to "Kristy's Education" to help pay for her to go back to college. She mentioned that she'd like to do that recently in that interview. It's the interview she had the last time she was leaving the hospital, you saw a piece of it in that last video. I'll post the entire interview up this weekend.
Need to go. Need to get some sleep.
Thank you for our thoughts and prayers. Please ask god not to let her get that disease again.
Rob
3-18-07
My brother and I drove out to spend the day with her this afternoon and she didn't appear to be doing too bad. She has some sort of virus. The doctors don't know which kind, but they do seem very confident that after a few days of antibiotics they will have home again. My brother and I joked around with her for a bit and then just watched her sleep.
Her mood was little low, but not too bad. Dr. Yanik (another favorite) was there with her. He told the three of us that Kristy was the healthiest person on that floor, and that she could expect to be back home in just a few days.
Not too bad.
Thanks everyone for your concern.
Rob
3-17-07 - 2
My father just called to tell me her room number at the hospital. He says she's not doing very well. Her face is all swollen up. He wouldn't tell me anything more than that. He's not the type to ever give bad news. My brother and I are going to see her tomorrow.
Then he called back a few minutes later with a chuckle in his voice. Mail was waiting in her room for. One from England, and another from Arizona. That cheered everyone up.
Thank you so much whoever sent those things.
3-17-07
Well, ironically, as I post this, Kristy is getting readmitted to hospital again. This morning she was overwhelmed with uncontrollable vomiting (like the times before), and they want to keep her for a least a few days to make sure nothing is wrong. The video shows how much better she has been doing, but this is the way it's been for the past three years now. It swings back and forth like an old clock.
Sigh. Every time this happens it breaks my heart a little. I really thought she was out for good this time.
I'll let you know more when I do. Thanks everyone for your thoughts and prayers.
ROb
3-15-07
Okay, sorry folks, but work has been crazy intense lately, so I haven't had a lot of time to update, but I have been working on the video, and it's looking great, a few more days and you'll see what I've witnessed happen to Kristy in just the past few weeks. She's really come back, I feel like I'm looking at my sister again!
If you've ever watched a loved one go through an illness for years, you'd understand just how significant that statement is. It's like someone you knew and loved for years went far far away, and you may have never seen them again, but one day they show up on your door, and you're like WOW! SHE'S BACK! THERE SHE IS!
This is a shot from the video I can't wait to show you.
3-12-07
Yesterday I went down to see Kristy and finish filming this month's video and wow, she's looking really good. I attribute it to all of your thoughts and prayers, they really work! She was almost glowing.
You'll see soon. I started editing it last night and hope to have it finished sometime tomorrow (very tired tonight). It's great to see her so lively, I can't thank you enough.
Rob
3-10-07
Kristy had a check up with Dr. Cooke at the hospital Thursday. It looks like she has some sort of thyroid issue going on right now. Well, that's a new one. Right now I don't know what that means, but when I see her tomorrow I'll find out.
New to the Sponsors section of the site (upper right hand corner of this page), is Mr. Cheapy. They're a band here in Michigan that's spreading the word about Kristy wherever they happen to be playing, and they are also collecting donations for her. I thought this was great so I wanted to link them.
Other heart felt stories have come my way. People that have gone through similar experiences as Kristy wrote in to share. I want to give them a page on the site as well. I just need to figure out where to put it (getting crowded).
So for now I'll just link to them here.
Kerrie Andree has been fighting illness in the hospital for years. This is her blog, if you have some extra prayers or wishes, she could use them.
Another site I would like you to send some love to, but be warned, this one will break your heart, is hopeforsebastien.com. This little guy has spent his whole life in the hospital. My heart goes out to the parents and their struggle.
Well that's it for now. Tomorrow I should be filming the next video. There's some things that have come up in the past month, like the return of her fiance, that I'd like to try and cover.
Thanks everyone for you thoughts and Prayers,
Rob
3-07-07
The site is back up and hopefully running more smoothly for everyone. Now I have no fear of it crashing when I update!
Since the video was published on the front page of YouTube on 3/4/07, we have taken in $3,111 through paypal donations! That is just amazing! Thank you so much to everyone who donated! Now keep in mind that isn't taking into account what is coming in through the mail. My dad and I will get together soon and get a more accurate count.
Looks like Kristy is going to be featured in Splash magazine! No, I've never heard of it, but from looking at their website it appears to be like the "Star" or "People" magazine that we have here in the states, only they're based in London. They are setting up a phone interview with her for next week. I'll let you know how it goes.
Kristy wasn't doing very well when I talked to her this morning, but I had her laughing when I told her that it had always been a dream of mine to see her featured next to Brittney Spears in a London gossip magazine.
Mountains of messages and emails are pouring in every hour. People witting songs, painting art, relating their stories, wishing Kristy well, from all over the world. You name a country and someone from there has sent Kristy a message. It's just incredible.
I have to tell you, I never realized what a dark opinion I had of the world until this happen. Now I see that there are wonderful people everywhere on this planet. A lot of them. The world is truly a brighter looking place for me now. So many good people from so many places. I'm rediscovering hope I didn't realize I had lost.
Thank you everyone. Thank you.
Rob
3-06-07
Yes she got out today, and my parents tell me she's doing really well. Her spirits are high, and for the first time in a long time she seems to have some energy.
I told her there's so many people saying prayers for her right now I'm surprised she's not levitating in the air.
We've been contacted by Good Morning America! They are interested in showing some of the video on their show and had me upload a higher quality version of it to ABC.com. They couldn't squeeze it in this Wednesday, but are going to try and get it in next week. Who knows, it might happen, just the very thought of it was enough to get Kristy to giggling.
I know the site has been horribly slow. The traffic usage is way over it's limit and I'm surprised it's still running. I've upped it to "Unlimited Traffic" ($20 a month, not bad!), but the site may go down for a little while tomorrow while they move it over to a new server.
We're all just amazed. My parents are shocked. The amount of love and caring being sent our way from all over the world is just wonderful. We're so thankful. You're all good people.
I've been trying to send everyone that emails a thank you back, but it's been so many I can't begin to keep up, and since I'm saving them all for Kristy I get confused on who I responded to, so if I email back twice please forgive. Now that Kristy's home I'll make sure and put her to work if she's well enough.
I started to film this months movie last Sunday. That picture you see in Current Status is from the video (I'll update that section after the site gets moved), but I decided to wait until she got out of the hospital. This is a story of recovery after all. We have mountains of pictures of her in the hospital, and "Kristy's house" is from over an hour of footage (trimmed down to 6 mins). I'm tired of seeing her there.
So this Sunday I plan to go down there and film a new one so you can all see how she's doing. I know she's had one of her chest tubes removed. I'm not sure if it's one branch, or just one tube, but that's progress. Just two more operations to go and she should be tube free (I think).
Thanks for your thoughts and prayers,
Rob
3-05-07
Wow. I don't know what to say! The response has been overwhelming! Thanks to everyone!
Kristy's still in the hospital today with that infection (check current status), but she's due to get back out this week!
I have to get back to work, I just wanted to thank everyone!
More later!
THANK YOU!
Rob
2-28-07 (Happy Birthday Kristy!)
Sorry she has to spend it in the hospital again, but it looks like she'll be out soon. Mom brought her a cake, eventhough she knows perfectly well that she can't eat it, but that's what moms do I guess. I told her to go ahead and throw pieces of it at anyone that walks through the door. Have an all out cake fight, why not?
As far as gifts go, well ... that's really tough, because any gift you might think to get her she's already gotten because of where she is. There's nothing left in the gift shop to get.
I'll pick her up a funny card or something. I don't know. Sorry I'm trying not to let this get too down. I'll post again when she's out.
Rob
2-25-07
I went to see her, but don't have any real info for you. Click Current Status for a picture.
2-23-07
I should have kept my mouth shut apparently, because she's back in the hospital again. Yesterday evening she started throwing up and was unable to stop so they brought her in. I'll be going to see her tomorrow, so I'll have more info then.
2-22-07
Well I thought I was going to have some really great news for you guys, but I guess it's not going to happen. I got contacted by an editor at YouTube about having Kristy's video featured on the front page. You can imagine our excitement at hearing that.
The editor wanted me to remove the Counting Crows song from the video because it was copyrighted. No problem! Within 24 hours I had the video reposted with some royalty free music I got off the web. I asked for permission to have it in the video from the artist who made the music, William Cushman, and he quickly replied yes. Here's his site - Link. Seems like a really nice guy, and I'd like to thank him for letting us use it. I've put a link to his blog in the sponsors section of the site.
So any ways, I told the editor that it was up there and she responded "Great! Give me a link to the new video!" which I did, and then ...
nothing. I haven't heard from them since. I'll send a friendly email to ask what happen on Monday, but I can guess what response might be, if any. I'd guess her bosses told her no for whatever reason.
Oh well, keep rolling! Kristy's been doing progressively better and better. I believe this is the best she's done in over two years! Now all we need to do is get all of those tubes out of her. I'll be filming the next video soon, so you'll all be able to see how she's getting along.
