2-15-2009
Thank you everyone who sent us their cards, gifts, flowers, prayers and thoughts.
I received a lot of requests for the powerpoint presentation I created from Kristy's Journal. This was displayed at her wake along side another screen that displayed a picture show of family photos.
This is only 1/10th of the entries made in her Journal. Most of them she bylines where the quote or paragraph comes from, others she doesn't (she wrote them?), and others she obviously wrote.
Thanks again everyone. My family has started the healing process.
2-8-2009
Kristy died around 8am on February 7th, 2009. Her family and friends are saddened having to lose her, but glad that her suffering has finally ended. If you had known kristy, please feel free to join us.
Visitation will be on Tuesday, Feb 10, between 2pm and 8pm at:
Ford Chapel
23620 N Huron River Dr.
Rockwood, MI 48173
(Allorefuneralhome.com)
My parents address:
28406 Sheeks
Flat Rock, MI 48314
My brother was unfortunate enough to have been stuck on a cruise ship while all of this was going on. So I wrote this for him, so that he could be there with her and know some of the things that were said.
The last time I saw my sister was on the night of February 6th. My parents, my wife, and myself were gathered around her bed in the hospital's ICU. She looked up at us and asked, "Is it time now?"
I hugged her, kissed her on the head and cheek, and whispered in her ear, "I don't know, Kristy. I guess that's up to you". Then I told her that I loved her. She told me that she loved me too, and I left.
The day before that, they had moved her into the Intensive Care Unit because she was having a lot of difficulty breathing. They called my mother to inform her of this, and asked her whether or not they should hook Kristy up to the machines. My mother instantly, almost instinctively, told them they should do anything possible to resuscitate her, but after some thought she called me all upset. My mother cried and told me she didn't know what to do.
I suggested we simply ask Kristy what she wanted.
So the next morning, as I headed to the hospital, my job was to ask Kristy whether or not she wanted that. I felt that she wouldn't, but it was still a difficult thing to ask without getting choked up and emotional in front of her - something which she hates to see.
The ICU, a part of the hospital that is a very unhappy place, as you might imagine was very filled and busy. The rooms are much smaller with no doors and extra machines in them. Kristy was wearing a face mask while one of the machines behind her made a loud whirling noise as it pumped oxygen into her lungs. She looked very upset.
After saying hello, and some vain efforts to get her to smile, I finally got to what I needed to do. "You really gave us a scare last night, Kristy" I said.
"I know" she said looking down, and a little sad.
"Everyone was really worried. So now, just in case, you know, just in case something like that happens again, would you want these guys to hook you up to some machines to keep you alive?"
She almost laughed at the question, and said, "Noo! .... and don't you let mom stop you, Robby!"
The fact that she had mentioned not letting Mom stop me was enough for me to believe her. I let out a sigh. Once she had started to drift off to sleep, I went to talk with the ICU team. As I talked with them at the front desk, I had a strange feeling overcome me, and suddenly I was running back to Kristy's room. Jogging into the room beside me was a nurse, and we found Kristy laying propped up with her mask in her lap looking confused and very very pale.
The nurse quickly put her mask back on and began firmly reminding her of why it should never come off - because very bad things could happen. Kristy started crying, and I held and caressed her as best I could.
"I hate this place. I'm never coming back here again. I'm never coming back here again, Robby."
After the tears subsided, and a little time went by, she decided to start picking on her nurse.
"You look like a short Keno Reeves". Her nurse was a rather short, handsome fellow. At first glance you may have described him as "some kid", but soon after he started talking you realized he was much older than he appeared, and that he had a sort of glow about him. His care of Kristy was IMMACULATE, and everyone in family liked him very much in a very short period of time. He was warm, intelligent, caring, we are very happy he was with her, and I wish to God I could remember his name.
"Robby, tell shorty over there to get me a chocolate shake".
He explained to her again that they didn't want her to eat anything because it could add to the congestion in her chest. She was miffed.
After he left she asked me to find her some cookies, and I had to apologize for not doing it. She cursed my name and I told her to be nice to me, because it was my birthday. She knew that, and directed me to the cards mom and dad had left for me to open.
Dr. Yanik, our favorite doctor, came in to give Kristy an update, and gave me some very sullen looks as he did it. He explained to everyone that the experimental drug they had given had (obviously) had adverse affects, but that they were considering trying it again because patients tend to react badly to it at first, but better on a second attempt. He then leaned in closer to her and said,
"Very few people have lived through what you've lived through, Kristy. You are one hell of a fighter. Like nothing I've ever seen. As long as you keep fighting, we'll keep fighting. Do you understand? Do you have any questions?"
Kristy was quiet at first, but then asked, "Do you think my dog misses me?" Her dog, BJ, had died several months ago, which had broken her already broken heart.
"Yes Kristy, I believe he does."
Soon after that Kristy's stuff arrived from the other room she had been staying in. I got out her laptop in the hopes that she might watch a movie and looked for someplace to put all of her clothes and books. There really wasn't any place that things could go. It didn't occur to me that people never stay in ICU for very long.
Rummaging through her stuff, I found a journal she had been keeping and flipped through it. Many many pages of her very fine handwriting were within it.
"Wow Kristy, what is this?"
"No big deal. I just wrote down things I'd find in other books. Things that interested me."
Being the writer in the family, I was very excited to find this, and for some reason, I said, "This is mine."
"Yes, you can have it" she said almost without noticing.
Then I realized what I had done. What had just happened crept up on me. Why was I claiming her journal was mine? What did that mean? What the hell was I doing claiming stuff? ... I believe the truth of the situation was known, pretty much to everyone in my family, even if they didn't directly know it, and that included Kristy.
As the nurse (Short stuff! Kristy continued picking on him), gave her injections and pills, with almost every application she would say, "Why are you bothering? It's just a waste of time. Whatever. What's the point?"
And then sometime later in the day, I asked Kristy, "Kristy, are you afraid of dying?"
"No." she said simply. I couldn't tell her emotion very well through the mask on her face. She stared at the dvd I had put in, but she obviously wasn't really watching it. The whirling machine behind her made it impossible to hear.
"Good. That's good. Because most religions believe that you have some kind of bill to pay after death, but if it's one thing I'm sure of, Kristy, its that you are already PAID IN FULL. In fact, I believe they may OWE YOU A CREDIT."
Her face lightened, and slowly, the corners of her mouth drew up a little, into a slight grin.
I leaned even closer to her and said, "You're not just going to heaven, Kristy, you're going up to the penthouse SUIT!"
A light giggle was heard from Kristy at that time.
"I MEAN IT ! No one has paid more than you have, Kristy. You know, with other people, any other people really, you don't know what's going to happen when they die. You don't know, but with you, I know. If there's a good place that you go to after you die, you're the one that's going to go there. Really. No one has paid more than you have, Kristy. You're going to get the royal treatment!"
She laughed a little. I like to think she believed me, but I'm just not sure. "Get me some potato chips, Robbie!" She reached out her arm, and "boinked" me in the nose after she said that.
"Kristy you know I can't get those for you"
"UG!" Kristy would say frustrated. "Go tell short stuff to get me some ice cream!"
"Kristy, they said I couldn't get that stuff, and you know that short guy out there, well I've seen him do karate chops on people trying to get food out in the hall. He smacks them down like a ninja"
Kristy giggled.
I am now sorry that I didn't get Kristy her chocolate shake, but you have to understand, many times I had left her room thinking she may die. For years and years, and years, I've left her room and told her that I love her. I left that night, not knowing what would happen, but feeling so terrible about what it did feel like was happening, might happen.
So if you're reading this Kristy, I owe you one. :)
At about 7:30am, my father called me and said, "Rob? Rob you better come now, they told us to hurry and come now."
I was already up, because I haddn't slept that night, and left immediatly.
But before anyone could get there, she died.
Kristy did recover. With the power of our love and prayers, she did make it out of the hospital and back to life, but the life she returned to was not the life she had left. Her friends had all moved on, and gotten married, and had kids. She watched as her best friends went out and had fun, but she couldn't go. They would be leaving to the bar, or out to dance, and Kristy wouldn't be able to come. She knew she couldn't dance, or drink, or basically have a good time. The steroids and the drugs required to keep her going only seemed to worsen her conditon. The docters slowly pulled her off the steroids, but everytime they did that she had a bad reaction. They couldn't keep her on the steroids, because they were destroying her body in other ways. They told her that her ankles and knees would soon need to be replaced, because the steroids were having that bad of an effect on them.
But we pulled her out, and gave her strength. The doctors, our family, everyone really prayed that Kristy would pull out, and pull out she did, but still, her life had been stolen away from her. It seems nothing we could do could stop that. So we wish her peace, and love her memory, and look for her on the other side.
Thanks again for your thoughts and prayers,
Rob
01-24-08
The battle goes on I'm sorry to report, and it looks like my virus theory is debunk. In an effort to get more information, I attempted to impersonate a "random bystander" out in the hallway outside of her room. "The Herd" as we call them of doctors was gathered outside of the room next to Kristy's, so I pretended to read things on the wall until they made their way over to her. Once they began going over her case, I folded my arms to look more doctor like and listened, but Kristy's nurse spotted me and ratted me out.
"Excuse me! I'd just like you guys to know that this is the patients brother standing here."
Rats, but none of the doctors seemed to mind. Kristy's case is shrouded in mystery, so they still haven't given any reasons to be optimistic or pessimistic. They simply don't know what's going on with her right now. I talked for a while with the herd, and then with a team of lung doctors to try and get a better picture of where they stand with her case.
First, they can't get a better diagnoses because they can't do the type of lung biopsy it would require to get that information. Kristy's platelets are too low so they're worried she wouldn't make it through the surgery. Her counts being low, they did a spinal tap to see whether or not the leukemia had come back, but it has not. They have deduced her problem down to two possibilities, or at least they had two they were focusing on. An infection of the lungs could be the problem, or her GVH has moved into her lungs.
The problem the doctors faced was the treatments for these two things are completely different from one another. So different in fact that picking the wrong one to treat actually makes things worse.
Some doctor somewhere must have flipped a coin, and they decided to treat it as an infection.
Things got worse.
So they started giving her steroids again to treat it as GVH, and initially things got even worse, but that was to be expected with steroids. It always takes her a few days to get used to them. I had shown up after 30 hours of steroids and it was tough. She was unable to stand up and walk to the bathroom. We tried to and she started shaking and crying about halfway there. She looked like she was going to collapse. As I carried/dragged her crying over to a nearby chair to sit and rest, I couldn't help but feel like we'd somehow been smacked all the way back to day one with all of this.
Recently things haven't gotten worse, she even has moments where she seems about ready to leave the hospital. A few hours here or there where she's very coherent and energetic, but overall, she hasn't seemed to be getting any better.
Right now the doctors are in a "wait and see" mode with the steroids. They're watching her closely (she has a 24 hour watch on her in case she sleep walks again), and waiting to see what affect their latest guess has on her illness.
As much as it bothered me to be filming Kristy at the hospital again, I had brought my camera and got about 10 minutes of film to make a new video post. Unfortunately, either the camera is getting old or the tape I was using was, because other than static I only ended up with 3 mins of useable film. When I go to see her again I'll give it another try.
Thanks for your thoughts and prayers,
Rob
01-16-08
Yes, she's still there fighting that virus. She was having trouble breathing so they put her on oxygen. They didn't know why she was having chest problems, but I believe the flu has moved to her chest, as flu's are known to do. They took a biopsy of her lungs to determine the problem. The big question on their minds is whether or not it's an infection or the GVH has taken to her lungs (which would be bad). After waiting on pins and needles for a result, the result came back inconclusive (they don't know). So we've made no visible progress on the diagnosis at this point.
As frustrating as that is, it's not that uncommon. People like to think our medical science is all knowing and everything, but it's still far from it. Every day they run into the unknown. So I don't think they are incompetent. They're just following their procedures and protocols to figure out what is wrong, and I'm basing my diagnoses on a gut feeling.
Oddly enough, it appears my gut feeling may win out.
Now she has a fever, and they don't know why. I believe it's the flu now moving from her lungs to her head. A flu will do that. The fever has made her delirious at times, and they've found her walking down the hall with her jacket on not knowing where she was. After that happen they put her on a 24 hour watch, so whenever a member of my family isn't there they have someone watching her.
Tomorrow I'm spending the day with her. I guess it's time to get that camera out.
As always, thanks for your thoughts and prayers,
Rob
01-09-08
She's looking pretty rough. A few nights ago she had a growing pain in her abdomen that got very bad in a matter of hours. So bad that at 2am my parents were driving her to the hospital. When I got there she was in a lot of pain snipping at the nurses in the "Adult wing" that they've put her in. Her nurse is an older lady that appeared to be on a serious power trip. Kristy (and my family), walk around the hospital like we've been living there for years, and I think that was making her mad.
She has contracted a virus, the doctors have confirmed, but they are not sure if that is the current problem.
I believe it is. I think she's caught the flu, and since she has graft vs.. host disease, it's hitting her times ten as hard as a healthy. I know, I'm not exactly a doctor over here, but that's what I think.
And what I also think, is that this could turn into a good thing. Since her immune system is "nuts", maybe it will go after this virus and then return back "happy". Like ok I see, I'm suppose to fight THOSE things, not your digestive system....
Wishful thinking, I know, but that's the kind of thinking I like to apply to these situations. All others that would like to join me are welcome.
Rob
12-19-08
I have been trying for months to get Kristy to write to you herself. She would always agree when I suggested it, but would then forget. All things considered, it was easy to understand why writing a blog might not be at the top of her list, but as time went by, and her health increased, her reasons for not doing it all disappeared.
But still she forgot.
So I stopped updating the site. People complained to her and my family (who would then complain to me), but I stood strong. If she wanted to see the site updated again, she would do it. This is, as one reader pointed out to me, HER blog, I am merely the creepy maintenance guy.
So it is my great pleasure to introduce my sister Kristy Dusseau, who will now be taking over these posts. It wasn't difficult for me to update the site, but I always pictured her writing the post herself as a true step towards her recovery. I knew this day would come and makes me happier than you can imagine.
Thanks for your thoughts and prayers, and for reading my yammer, Kristy takes it from here.
Rob
HELLO EVERYONE!!!
I have to apologize for the very long delay in an update. It seems as though my brother has decided he doesn't love me anymore (just kidding). He is very busy and aggravated with me because I am technologically retarded (compared to him anyways!), If the newest video ever comes up I look very terrible in it and that is why at the end you can hear me talking while Betty Boop is dancing around. As you will see I moved in with my friend Fawne and now I drive myself to most of my appointments and I am finally starting to feel independent again!! That is what I have wanted so badly since the beginning of this whole nightmare. I am working for my dad and will be very busy once tax season starts next month, which makes me happy because I am less depressed when I am busy. I am also planning on joining an aquatics program in my city that will not harm my joints but will continue my physical therapy and hopefully help me lose some of this steroid weight. Healthwise I still have days where I don't feel very good but my GVHD is not active right now and I am progressing steadily for the better. My doctor even says he doesn't think there will be anymore bumps in my road, but he is not psychic, so I can't hold him to his word.
I thank you all so much for keeping me in your thoughts and continuing to worry about me. If anything serious had happened I am sure rob would have sent out a quick note but I have been doing pretty good (so now I'm just a normal boring person). --- IF YOU ARE READING THIS PLEASE CHECK BACK. KRISTY'S EMAIL WAS CUT SHORT, BUT I WANTED TO TEST THE SITE AND MAKE SURE ITS STILL WORKING. SO CHECK BACK FOR THE LAST FEW SENTENCES.
