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Saturday, December 30, 2006 10:10 PM CST

Um... was gonna update, but feel very sleepy instead. I'll get back to this tomorrow.

-Kasey

Sunday, December 24, 2006 9:09 AM CST

Things are also pretty laid back here. I spent a good chunk of Friday doing my "last minute" shopping - both Christmas and food shopping. A couple of really odd/sad things happened that day, though.

The first was when I was at Target - I ran into Eric's 1st grade Teacher - Mr. Hoffman. Matt Hoffman is one of the kindest, gentlest people you will ever meet and he did wonders with Eric. Eric had a really hard time in 1st grade with "transitions". This is before he had cancer. Eric just had a tendency to get in trouble - a LOT. He had issues with ADHD and ODD (oppositional defiance disorder - when you say "yes", he says "no" automatically as a 1st reaction - at times very loudly and could be violently) - so Matt Hoffman really helped him come around and see that he was an OK kid who could control himself and his temper. Anyway, running into Mr. Hoffman was good - it was a 2 minute conversation and I met his daughter. But after we parted, I slid to the back of the store and cried for a bit. not much but I was feeling a little emo, so I just let it out for a while. Luckily, no one was back in the lightbulb section of the store that day.

The next thing that happened was at the grocery store in the checkout. I had noticed that the girl checking me out was familiar, but I couldn't remember how. Well, as I was paying, she asked me if I was Eric's mom. She told me she was the girl who had worked with Eric for several months in the Mahtomedi School District's "Make A Difference" program. She had come over to our house several times to just hang out with Eric. Odd thing is, I can't even remember if she was with us before or after Eric was dx with cancer... was she hanging out because of the behavioral stuff, or the cancer? At any rate - she asked how Eric is doing these days. I just stammered and said, "Um, he, um, well, he... he died... about a year ago." To which she replied, "You're joking..." and I said, "Unfortunately, no... the cancer got the best of him". She then looked like she just wanted to sink into the ground... and she started repeating, Oh God, I'm so sorry... I didn't mean to... and I told her, "It's ok - well, no, it's not ok that he died - but it's ok that you asked" and then I started to cry again... and I felt really awful that I was standing there in Festival Foods with a bazillion people all around me and I'm crying, so I keep bagging my stuff. Then I looked at this girl (Amanda, I think her name is) and I tell her "Thank you for spending time with Eric" and she tells me "you know.. I just want to tell you that Eric said the nicest thing to me that anyone ever has... he told me that I was a good person and that I was going to go to heaven - I just want you to know that." I told her thanks and left. Now I wish I had gotten her phone number or something...

And so we enter the 2nd Christmas with out Eric.


But things aren't alway so emo...

My brother, Jason, is in town. He got in on Friday afternoon and we have lots of plans to play lots of board games. Mike, Jason and I saw a movie yesterday (we braved the awful holiday crowds) and saw "The Prestige" - about magicians. It was a cool movie - tho messes with your head. Katy went with a friend to see another movie - about being overnight in a museum or something. I have a long list of movies I want to see during my break, so we'll probably go again today to a movie.

My diet is "on hold" this week. I purchased tons of food that is bad for you (so tastes heavenly) and get to make several pies for Christmas Day. Yummm... love the holidays.

Oh - school! I am quite proud of myself. I rounded out the semester with all A's - Yeah! I am a 4.0 student! Not bad for an old dog, eh? Guess I learned a few new tricks. For those needing a refresher, I took Zoology, Evolution, Cell Biology and Genetics.

I am so glad I have gone back to school. It was hard at first - I didn't want to "mess up" the status quo here at home... me at school was gonna mean less time at home... less time to dwell on Eric and my life and my failures. And that did happen... I feel pretty good about myself. I have met some wonderful people. I realize I can still learn and grow. I also realize I don't have to constantly relive every moment of Eric's illness and death. I can set it aside for a while and I still have the ability to go back to that place and remember, but on my terms (usually) and my timing. I still don't think I ever truly want to give up my grief, because in doing so, it means leaving Eric behind... but I don't have to live in that grief all the time. Don't get me wrong - there are still times I don't ever want to leave my bed...but then there are also times I don't ever want to go to bed - life is too short and there are too many things to accomplish. Maybe I'm getting a sort of balance. Maybe my balance is the average of more extreme highs and lows than most parents experience, but at least is is more of a balance than it was before.

Anyway, I plan to kick back for this week. Not worry about what I eat... not worry about when bedtime is... not worry about spending too much time on World of Warcraft... not worry about homework... not worry...

Happy Holidays,
Kasey

Thursday, December 14, 2006 9:00 AM CST

Well - I have done it! I have survived my first semester of college - the last day of class was yesterday. Now, I still have to survive finals!

All-in-all, I am pretty proud of my accomplishments to date. Prior to classes starting, I was having nightmares in which I dreamed that it was the last day of class and I hadn't attended a single class and now had to take a test. I'm happy to say, that didn't happen even once! My awesome planning skillz being what they are, I managed to attend nearly all of my classes and I studied for all of my tests. I even got a perfect score on my last Genetics exam! (as the prof wrote - "Pretty good, for a Chemical Engineer")

So, what is in store for me now, you ask? Well - LOTSA studying thru Wednesday, which is my last final exam. Then, I sleep. The last couple of weeks have been a bit stressful as I worry worry worry, so I don't sleep very well. But I plan on getting caught up during Christmas break.

Oh, and I'll work a bit too. I'm doing some research next semester, so I'll get started over break to get a jump on it. My grad-student mentor has some work he needs to have done too, so that is good reason to come in. He's teaching me how to do PCR and gel electrophoresis - where we take a small sample of mouse tissue and extract the DNA and look for a specific sequence to see what caused the cancer the mouse had. It is pretty cool.

In addition, I'll be heading out to California in Jan to visit my grandmother. She is still in recovery mode from her stroke in August. At least she is home (or she was at home earlier this week). She needs round-the-clock care, but seems to be improving. Unfortunately, she had a bit of a setback this week and ended up in the hospital. I hope she can get out and back home in a few days.

After that, it is back to school again. Next semester, I'm taking Microbiology (5 credits with a lab), Cancer Biology, research and a food science class. Once again, I find myself looking forward to it.

OK - so that's my quickie update. I have to study now. Hope to write a better entry later.

You know, one of the nice things about finals is that I am so busy with studying, I haven't had time to think about Christmas. In some ways, I may be avoiding it on purpose. If I am too busy for Christmas, I can't think of the fact that Eric isn't here. Well - at least Katy and Mike have been doing "Christmas bonding" - they put up the trees, decorated the outside, etc. I haven't even put up a single ornament. Ahh.. the power of avoidance...

-K

Sunday, December 3, 2006 9:32 PM CST

ARGH! I just finished a really long entry and accidently deleted it! Bah! It was all about how I was such a total crab at Thanksgiving and that it seemed like everthing sucks but I realize it is probably a lot of pent up grief.

But now, I deleted my entry and frankly, I'm just pissed... not grief related I'm sure of that.

It was a pretty good entry too. Too bad you won't be able to read it.

Anyway... in a nutshell, for me, Thanksgiving sucked. Mike and Katy had a good time at the farm, but I didn't - too many kids, too many brothers, not enough space and quiet for my tastes. I did have a good time when Mike and I got together with Dan/Natasha, Steve/Krissy, and Kris/Shelly. It was good to chat with the girls!

I think a lot of my issues with the farm is that there are all of these boy cousins running around who used to be younger than Eric and now they are either catching up or surpassing him. Eric will never be older than 9-almost-10 - which sucks.

School is going well. Well, my last evolution test wasn't as good as I'd hoped (77 - average was 65) but I'm submitted for a regrade - I think at least one of my answers was correct. My last Zoology lecture test, I got a 97.5 I just took a Genetics test and I think (hope) I did well. I have a Zoology Lab final on Tuesday - wish me luck.

This week, we started learning about cancer in Cell Biology. Last Tuesday was a really hard lecture for me. I think I was gritting my teeth the entire lecture and I have never taken as many detailed notes. We covered it again on Thursday - yet it somehow leaves me unsatisfied - I am still lacking answers. I somehow think that if I can figure out why Eric got cancer or how it happened, I can still fix him. stupid, huh?

The other night, I couldn't sleep so ended up in Eric's room. I realized I hadn't been in there for over a month. I grabbed one of his blankets and I've been sleeping with it ever since. Not sure what it means, but it gives me comfort. I'm bummed out, tho, because it doesn't smell like him any more.

Why do I still hurt so much?

Well, even if I do, I usually shove it aside - life does go on, you know. Speaking of life....

Katy is doing MUCH better in school this quarter! She's at all A's and B's - even has an A in math at the moment! She told me that her Math teacher was talking about her to her English teacher - about how much she has improved! I really thing it has made a general improvement in her attitude.

This week, she asked Mike if she could get new ice skates. Of course, since we are encouraging any sort of activity with her, they went and got some ice skates this last Friday - and she has gotten us out to skate every day this weekend. The pond behind our house is frozen solid (9degrees F will do that ya know), and it is glassy, smooth and perfect for skating! Tonight we were out there and it was a gorgeous icy cold night!

In addition, Katy is pretty pleased - she's got a solo in the Choir Concert coming up later this month and she's pretty excited about trying out for the Middle School Muscial. Tryouts are this week. We have her all signed up again for ski club as well - this year should be better than last - well, anything is better than last year, really. Last year was so, well, sad and difficult - it was just an effort to get out of bed sometimes, let alone do things like go skiing.

So, we are happy about how things are with Katy. There is always room for improvement, tho. She is truly living up to the word "teenager" now - attitude galore! and she challenges everything! and she and Mike butt heads a lot - they are both the stubborn ones and I find myself in mediator role, which is a laugh because I can be just as much of a hothead as either of them! But, I guess I know that this is all part of the teen experience of pushing boundaries.

Well, it is time for bed now. I'm wiped...
-kasey

Wednesday, November 15, 2006 5:18 PM CST

Letter to Eric From Mike:

February 17, 2006

Dear Eric,

Hello buddy, favorite son of mine. It¡¦s been awhile since I¡¦ve written. I found a postcard in my office yesterday that I sent to you from Japan a few years ago. Its one of the few examples I have found where I wrote a letter to you. I think it¡¦s cool that we spent so much time together that I didn¡¦t need to write to you much. But now I think I¡¦d like to give it a try.

You and Katy and mom and I traveled one heck of a journey kiddo. We experienced things most people will never experience and we shared in ways that are really hard for others to understand. I guess the thing I most want to say is how proud of you I am. No son could ever make a father more proud of his accomplishments. I remember you asking me once why you got cancer instead of someone else. Perhaps you, Eric, because of your strength. You were able to deal with the knowledge of having a short time to live and at the same time talk about a future. Talk of kids, marriage, and college all while you are dealing with tremendous physical pain and even greater mental stress. For years you did it. My god, what strength and determination. Enduring the many treatments, the life of uncertainty, the pain, and the constant asking of more from you. I am so very proud.

Our last days together didn¡¦t end like I thought they would. They memories of our last week will bother me for a long, long time. I knew you would likely have bad pain and we would have to work very hard to keep you comfortable, but I never expected you to have to be afraid to get your breathe. I know calling the paramedics on Labor Day was very scary for you. From that day until the day you died was the hardest time of my life.

I want to talk about that last week a bit. Mom and I never left you alone. Not once. You were always in our sight and we were always with you. I never got to ask you directly, but I know that must have been some comfort. We kept you at home and cared for you until the very end and Katy was there also. It was very hard work for us Eric but we did it for you and we know that you did so much more. But giving you the narcotics that made you able to breathe was awful. It took you away from us mentally sorta, but you could still kinda respond sometimes. We feared what you were feeling. We feared you would feel trapped, scared alone? We were there and we were talking to you, but it was hard. So very hard.

I remember giving Kasey a chance to catch some sleep while I stayed with you that last night. She came back into the bedroom that early morning at the same time I ¡§woke up¡¨. Not sure how much I was really asleep. She asked, ¡§What¡¦s changed?¡¨ and I said nothing. But we held your hands and listened as you took your final breathe and watched and felt your heart stop. You went onto a better place and I felt such relief. Oh, the odd journey we traveled where your death brought thoughts of relief. Thanks that your suffering had stopped and you¡¦d gone onto a better place. There is some guilt feeling good that your child has died. What a long, strange trip it¡¦s been.

We never talked about it ahead of time, but I carried you to the hearse. Another hard thing to do. I felt like I had carried you from your bed to the car so many times that the one last time would be a tribute. It wasn¡¦t good at all. You were stiff and cold. So mentally cruel I can¡¦t put it into words. Already I missed the boy that would climb onto my back and ride. But you are my son and I wanted to be with you as long and as far as possible. So I did it. I carried you. I just wanted to tell you I did that for you. I did that for us. I was able to do it cause I knew your essence//soul had already left.

Things have changed for all of us. This experience has changed some things in my life. I know you¡¦d be proud I¡¦m still not drinking and I have no need to and no desire to. Like a lady I used to sit next to, I am goofy enough without alcohol. There is also nothing I am afraid of anymore. I have seen the worst again and again and walked through it. I have survived and I will survive. There is nothing I can¡¦t do. All because of you.


June 19, 2006

Dear Eric, I miss you. I¡¦m on my way to China and I¡¦m writing again. The last time I wrote I was also on a plane headed to Asia. I meant to write more last time, but for the longest time I couldn¡¦t figure our where I saved the file. I just found it and I am glad. It made me sad to lose my letter to you but how I¡¦m happy.

Well quite a bit has changed since February. Spring and now summer arrived. I remember staring at the hostas this spring in front of the house when the grass was green and the hostas were spreading their leaves. I thought about the fact that life was returning. I remember thinking how I had known little but death and darkness since you died. Seeing life again was almost puzzling to me. I wasn¡¦t sure how I was going to be able to cope with the look of green and the sounds of spring. But summer is now here and it is all good.

Mom, Katy and I continue to struggle without you. Katy had a hard time in school this year getting assignments and keeping caught up. She dropped Spanish to get some extra help from the school. And mom and I have been helping her with homework. Mom misses her boy and so do I. It is rewarding as a parent to take care of your children. That gave us a purpose in life that was taken away when you left us. You can¡¦t help but feel you failed somehow. Not that I can think of anything that I know we should have done that we didn¡¦t do, but you died so we failed. It leaves guilt on top of the loss.

We have struggled with how to re-structure our lives. All of us were focused on caring for you Eric and being a family together. That job of daily caring was removed leaving a void. Mom is going to give a try filling that void by going back to school. I know you must think she is pretty old to carry a backpack, but remember she is a pretty good video gamer, so she¡¦s kinda a kid at heart. I struggle with the after math of Carpe Diem¡K.living for the day. The time since your diagnosis was a special time. WE LIVED. We lived every day and we did all kinds of things together and went to all kinds of places and experienced all that we could. But that ended. What happens to those that are left after you are done living for the day? What do you do?

I have good days and bad days Eric. Your battle with cancer brought changed me in ways that can never be reversed. I didn¡¦t think that much about death before. It¡¦s not an easy topic to ponder or dwell on. But I have seen death, felt it, lived it. It is real and it makes me think life. Why we are here, what we leave behind and what do we do with the time we have. Big questions. I haven¡¦t answered my questions yet. But I think about them and that is something you gave me. An awareness of life. Thanks.

The kitty cats miss you I think. Especially Patches. They still sleep on your bed though. Not sure why Annie is so fat but she hasn¡¦t gotten any skinnier since you¡¦ve been gone.

I found your BB-gun the other day in the corner of the garage. It was a bad day for me. I also found your baseball bat in with my bats while I was looking for my batting glove. When I find these things a great since of loss and ¡§never-more¡¨ comes over me. I know we bought that bat on our way to the batting cage and you started feeling so bad we never went. And it never got used after that. And I know you¡¦ll never shoot that BB gun again either. I hate never.

I found a reflector off your bicycle in the Jeep. I put it there when it fell off to remember to go to Fleet Farm and get a new bolt for it. It fell off when you were learning to ride your bike without training wheels. I remember you just learned to ride really well without training wheels that spring you were 7. Three years later and the bike remains un-ridden and the reflector is but a bitter memory. Seems pointless to fix the bike now and bad to throw away the reflector. I went to place it in the tool cabinet by the laundry room for a bit, but there I ran into a messy tangle of oxygen hose. Bringing back memories of your last days on oxygen. Felt like I was being chased by the past with all these things I found.

I can also remember the times you did ride your bike and the times we shoot the BB gun together and the times we hit balls in the batting cages. There are also good memories to balance the anger and injustice of loss. But bitter, bitter anger and rage are feelings that take a long time to lessen.

You missed a real cool ceremony at OHA. The cub scouts created a nice mound of dirt with flowers and grasses that surround a tree planted in your memory. A bench to rest and think is located next to the tree. The ceremony involved your classmates and especially some friends of yours. They came outside during lunch time and did the Cub Scout flag ceremony and your friends read poems or talked about memories of times spent with you. It was a real tribute to you Eric. Made me feel proud of you again.

I wonder often what you are doing and where you are at. I imagine things you might be doing. I hope you are watching TV right now. Maybe not so much the cartoons, but the good shows that taught us about the wonders, animals and nature and life. You could learn and remember so much about our world from TV it amazed me. Your incredible intelligence is what brings me such a feeling of loss. When great people die early we are left to wonder what else they could have accomplished? I must soon try to focus on what you did accomplish.

It is still a year of firsts for us Eric. First holidays without you, first time going back to places without you, etc. The first time back to a place or time without you is hard. Brutal. It sucks the motivation out of you. The boat and Ernie sit in the driveway. We bought them for the family, but because of your illness. Carpe Diem has left us with a few big hulks in the driveway and no spirit to use them. I think the future will be much better, but this is still our first summer without you. It¡¦s not the same.

My biggest concern is for Katy. I want you to say special prayers for her Eric. She is dealing with parents who are dazed from the loss of a child. No matter how hard we try to be there for Katy she will still be sharing our time with you. And she had to share so much these past years. She will be resentful of having to share and feeling guilty for being resentful. And she¡¦ll be annoyed with parents who seem to need to dwell on this. It¡¦s a tough age in here life also. What would be really scary for you I know is this: Katy is talking about driving! Scary huh. After seeing her drive a golf cart do you think she is ready for a car?

Well not too much else I want to say right now I guess. Mom and Katy and I are playing WOW still. We had Galron lay under the trees across from the bank in Darnaasus. I think you like it there. It¡¦s a nice night elf spot. Mom played Shadowmaker a bit, but not too much. I¡¦m way behind on my cartoon network shows without you around.

You take care of yourself. Mom and I are watching after Simba, and Kinglee and Slush and all the pride animals.



November 12, 2006

Hello Eric from Shanghai, China. Seems like I end up writing to you during my Asia trips. I guess that is when I get most lonely and need someone to talk to. Thanks for being there. I have a small rock here on the desk with me. I don¡¦t carry the rocks so much anymore. I don¡¦t need them so much anymore to help me make that connection with you. But it is nice on this trip.

This is a three week trip to install some equipment for 3M. Remember when you and I went to look at the 3M machine together. This one is the same only bigger. I got sick last week though. Sore throat, stuffy head, coughing up green stuff, runny nose, and body aches making me feel very weak. I felt like crap, but couldn¡¦t just rest because I needed to do work. So I did what I needed to do, day after day, without being able to go home and really feeling bad. And I thought about you. How long you did that and how much worse you felt. And even worse, the thoughts of death. So I got a reminder this week of what it felt like to feel bad, but not be able to go home. Today is day eight of my illness. Pretty sure no bird flu got me, so I¡¦m gonna live. Sleeping a lot at night this weekend, trying to build up strength to work again. We wear clan room suits and stand most of the day in a noisy area trying to communicate complicated technical stuff to people who don¡¦t speak my language. Not easy. And lol, 3M actually make me ask for permission for this.

I think the main reason I wanted to write is to tell you I still miss you very much and love you. I think about you every day and usually several times a day. I never know what will trigger the memories. The other day I thought about you while taking a poop. ƒº Kinda personal but it was a hurting one and I remember the pain you had with BM¡¦s every time. Remembering the morphine we gave you just so you could get through it. Good grief, what a memory. I thought about you as the cattails dried out this fall. Good crop, you would have had fun knocking the stuffing out of them. Thought about you as you got invited to take a trip to Alaska. We got a letter in the mail saying you were invited because of your high test scores. Bitter sweet irony. Too many of my memories are still bad ones Eric.

When I think of you Eric I often still get sad. But, not like I used too. I used to get so sad and so angry. After you died, I had such tremendous emotions that they can¡¦t be explained or quantified. Years of stress, years of uncertainty, followed by the loss of what could have been. Raging anger. Raging. But no point of focus. Who to blame? Who to hate?? And disabilitating feeling of loss. Missed futures for you and for our family. But as the one year mark has passed the rage has subsided and the loss has ebbed. At first I wondered how long I would be affected by these feelings and memories of your pain and lost potential. I know now that it will be forever for me. The feelings and memories will always be there. What changes is the number of events that trigger those memories decrease with time and my ability to remain functional during these memories increase with time.

As I think back in time I remember you as the infant, then a small boy, then a sick child. But the sick child to me is no longer just a boy. Somehow, you became an adult during that time emotionally. You processed thoughts and dealt with things better than a lot of adults I deal with. Weird that I now think of you as an adult in some ways. I¡¦m kinda rambling here, but when I write I¡¦d just like to jot down my thoughts as I think of them. Kinda lets me process stuff.

I think Janice Joplin once sang, ¡§Freedom¡¦s just another word for nothing left to lose¡K¡¨ I think freedom has been had for me, not by nothing left to lose, but by having a loss so great that no other loss can be greater. Having been through the worst possible I am free. That explains what I wrote before about not being afraid thanks to you. Not free in the typically sense, but free from the nagging doubt that sometimes people have of will I be strong enough. How will I handle my fears? You have given me a knowledge and experience of what I can handle and I know there is nothing emotionally at a high enough level to give me a challenge any more. Free from doubt. Free from uncertainty and fear.

¡§If you can keep your head when all about you are losing theirs¡Kyou¡¦ll be a Man¡¨. Powerful to have seen and been through so much. I have always felt and thought of myself as a young kid yet, maybe still running around that 18th birthday keg out in the woods. But I know that I can be a Man when needed. I think you were on too Eric. Living you taught me to love. Dying you taught me to live.

I really wanted to write before your birthday, but time just keeps on moving, relentlessly. And free time is fleeting. Around the first part of September was very hard. I remember thinking do I call it your 1yr deathday? It made me think about going to the bank to fill out forms and having to spell deceased. Not a word I thought I would use with such astounding emotions behind it. Your deathday and birthday being so close makes it a very emotional time of the year. I went to a friend¡¦s cabin the weekend of the 10th and thought about all we had been through and how time was still in slow motion one year later. I came back home and mom had candles going everywhere and the Lord of the Rings movies going all day. We remember you and all your special traits and the love you gave, and we continue to celebrate and honor those traits.

I¡¦ve been donating platelets a lot this year. Apherisis they call it. They take my blood out of one arm, run it through a machine to separate platelets and plasma then return the rest. Takes a couple of hours but sometimes I can give 3 units of platelets. I think it is emotionally as hard on me as physically. I know who uses those platelets and I know how often you needed them Eric. The memories cause such draining emotions; it makes it tough for me. But I have AB blood, which is a universal blood for giving platelets. Anyone can have my platelets. So it is useful for emergency situations. It is my way of giving something to life. It is good for others so by doing that I feel good. Must be part of the great puzzle of why we are here and what should we do while here.

Mom and Katy joined me on a trip to Asia this summer. We went to Hong Kong, southern China and to Tokyo, Japan. It helps me on this trip because I know that they know a bit about what I am seeing and experiencing in China. We saw a lot and had a good time. Katy played WOW in the hotel. We are still all WOW junkies. I know that you would have moved on by now to a different game. The quests and the mystery are the best part. And once you¡¦ve done that the other stuff would have gotten boring for you. But the new expansion is coming out soon. It will be fun to be questing again. Anyhow, Katy got a good experience in Asia, but the trip was too long for her. Kinda like our Hawaii trip. But she got to see a lot of things most kids never get to experience so I think that is cool.

I put a Jack-o-Lantern at your grave before I left on this trip. I wondered how many other people did that before leaving on their business trips. Not many I bet. Having just left you emotionally with the pumpkin I carved for you/us then meeting work people at the airport and talking about regular ¡¥ol things is quite a trip for the mind.

We never took Ernie out camping this year. And we only took the boat out twice I think. Like I wrote before, just not there for me and mom and Katy. When I get back from this trip I am hooking the boat to the camper and taking them to the farm for winter storage. I am already thinking about the memory of you riding with me in the past. So many, many memories. Just need to remember then fondly not as never to do agains. But o so hard.
We finally gave away a bunch of the medical supplies we had to a medical charity. Bags of supplies, so much stuff. It was like giving away a part of you. But I knew that it wasn¡¦t and it was actually really stuff that you hated. I cried when she drove away. I am crying now. Have been off and on as I write this. Part of the reason I am writing, to release what I have held in check inside. I kept your wheel chair. Not sure why. Just couldn¡¦t give it away. Too much still a part of you I think. Some day I will put the reflector back on your bike and move on there also. For now it is still a memory of the day we knocked it off learning to ride. I am frozen in time in so many places. Unable to move on. But slowly, ever so slowly, I make progress and learn to adapt to the new life and family I have and the memories of the old one.

Mom is back in college now. No doubt she is going to do well. She is so smart and knows how to work hard with focus. She also is learning to adapt slowly and to develop a plan for what she wants in life. This plan will take her awhile I think, but you gave her a chance to make a plan or change her plan in mid-life.

I on the other hand have never really had a plan with life. A few key events have lead me to where I am today, but not many of them where planned or intended by me. Amazing when I look back at the past. I think I can best describe my life path not as one of action or even re-action. To react in my mind is to use some input and make a decision from that. I¡¦d say my life has been one of ricochet. Rebounding from one event/action to another until I¡¦ve ended up where I am at today. Little planning and few choices, just bouncing through life.

Now I want more. But don¡¦t know what yet. I know our time here on earth is fleeting. I ponder the purpose of it all. I¡¦m looking out over one of the biggest cities in the world thinking, ¡§What¡¦s the point? ¡§ Your mother and I have talked about having another child, but we wonder if that is what we really want. Kinda one of those things that you are committed to, once you start. Too early after your death to start, but I know I am not getting any younger and the clock is also ticking for your mom.

Katy is doing OK in school, but continues to struggle with doing homework and getting assignments done. She needs some of your prayers and thoughts Eric. I know she misses you a lot, but doesn¡¦t talk about it. She keeps too much inside just like her Dad. She¡¦s a teenager now. Hard to understand where the time goes.

The holiday season is here and for many stores has been here awhile. Going to be hard again this year without you Eric, but we will be OK. . Katy and I did a nice job decorating the house for Halloween. Which was nice, even though I spent Halloween in Shanghai. Nice to do stuff with her. Going to the farm for thanksgiving. Not sure where we¡¦ll be for Christmas. Maybe take a small vacation somewhere.

Going to rub my rock for a bit now and think of some fun things we did as a family. I wish I could be with you more. Sometimes I am with you in my dreams, but not nearly as often as I would like. I know you are a part of me and so are always here though. Take care Eric, I love you very much. - Dad -

Monday, November 13, 2006 8:19 AM CST

Happy Monday!

Mike is STILL in China... One more week to go. It isn't all work, tho. He managed to purchase a set of golf clubs and he said he was gonna play some golf too. Sounds like it is temps in the 80 in Shanghai.

That's a lot warmer than here. I woke to a dusting of snow today! Bah! Seems too early.. but I guess I do live in Minnesota, eh? Fer cripes sake!

Mike, unfortunately, did get sick while over in China - a nasty chest cold. He nearly lost his voice as well. Nothing is worse than being sick on a business trip. That happened to me once - flu thing. It was awful. Sounds like Mike is on the mend tho.

We talk occasionally via Team Speak - a tool we used for communication during gaming. It is pretty nice when working - talk via internet for free. Unfortunately, Mike's internet connections have been a bit sketchy, so we get lots of lag. But it is nice when it works.

I did a really brain dead thing yesterday when doing laundry. Didn't check the pants pockets and washed my cell phone. Gah! This reminds me of the time water was spilled on my BRAND NEW laptop PC in 2004. Like then, I have taken the phone apart as much as I could and I'm letting it air dry. Should be OK if it dries all out. I'm just kicking myself, tho. In addition to the cell phone, I also washed a small bag of bands for Katy's braces. Now there are very small rubbery bands all over the washer/dryer/screens/floor. Well, I hope I've learned my lesson.

Today I have a Zoology test. Tomorrow I have the Zoology Lab Test and a Cell Bio Test. I'm doing pretty well in Zoology - but this next lab test makes me nervous - gotta identify "parts"... parts of birds, turtles, snakes, sharks, starfish, sea cucumbers - all dissected, of course. So far, school is going well. Still all A's and B's.

Oh - I was accepted to do some undergrad research starting after Thanksgiving. This will count as a lab class next semester. I'm working with Dr. David Largaespada and one of his grad students, Jon. We will be working with mice - making them get cancer and trying to determine which genes cause which type of cancer. Eventually, I'll look specifically at sarcomas. Every time someone gets cancer, there is a problem with their DNA - usually at least 6-7 genes with mutations. For Rhabdo, they know of at least 1 - but I hope to help find out the rest. Immediately, tho, we'll be working on brain cancers - it is a 1st step. I feel a bit guilty about the poor mice. But I feel worse whenever I read about another kid with Rhabdo relapsing or dying. And I remember how Eric wanted his tumors sent to the tumor bank when he died "So that no other kid would have to go thru what I went through, Mom." So, I do this in honor of Eric. I will thank the mice for their sacrifice and see what I can learn.

Here is a link to David's Website at U of MN:
David Largaespada
David Largaespada - Cancer Center
David Largaespada - GCD

OK - gotta scoot. Test Time.

Take Care,
Kasey

Thursday, October 26, 2006 8:43 AM CDT

Katy is doing much better now - her pain levels have dropped off and she went to school both today and yesterday. I was really getting worried because she was acting really "out of it" even on Tuesday. The doc has told us she would be feeling better by Mon, but it took Katy a few extra days to get her up and running, I guess.


The next frustration for us now is that Katy, once again, started not doing homework and she kind of bombed her last Algebra test.

=( This is hard on Mike and I because we think things are going OK and she doesn't tell us that she has been missing work. Then we look up her scores on the schoolview (school grades) website, and suddenly find out that 1) she didn't turn anything in and 2) she had been lying to us when she told us she didn't have any work or that she had completed her homework. I hate to have to make her drag out every assignment and make sure she did actually complete all the problems - but that is where we are at. I just don't understand any of this.

So, once again, we are at a point where Katy has lost her computer and TV privileges. Now she is moping around the house, bored. We tell her to read - because she needs to read for school (needs 65 more AR points), but she pointedly refuses to read. ARGH! In that one, she is upset because she read several big books by Philippa Gregory (The Other Boleyn Girl, The Queen's Fool), but the school doesn't have AR quizes set up for them, so she can't get credit for it. So, I think Katy is kind of boycotting the system. Of course, she doesn't realize that it isn't hurting the school - just herself - if she boycotts the system.

One good thing - Katy has spearheaded an effort among her friends to create a webpage for her and her friends.

They submit photos, poems, stories, etc. and we put them up. I'd put a link here, but I'm pretty sure I'm not allowed. Generally, Katy doesn't like for me to post pix of her or even really mention her at all. She wants to stay in the background - anonymous. Unfortunately for her, she is the main cause of my daily stress at the moment, so she's the highlight. I'll check with her and see if I can put a link for her web page up. Don't hold your breath, tho.

Well, today I will be studying Genetics.

I have a test on Monday. I also have my lab paper due on Tuesday and a big Evolution problem set due on Wed. So, I had better be productive today. Thursdays are my "off days" - I only have one class, so, in theory, I have lots of time to study. In practice, however, I manage to waste the day away - in fact, one of my things today is that I want to get a manicure/pedicure. I'm sure that will kill lots of time.

Have a nice day,
Kasey

Sunday, October 22, 2006 10:02 PM CDT

I just realized, it has been a long time since I have updated.

The big thing around here was that Katy had her adenoids removed this past Thursday - she was constantly stuffed up and getting sinus infections. So, her adenoids were VERY enlarged (4 on a scale of 1-4). The doc also removed some of her turbinate tissue - which I am not entire sure what that is. Anyway, she pretty much breezed thru surgery - but was pretty sore afterwards. She has been on pain meds since Thurs, and I think her pain peaked out yesterday. Katy is also on an antibiotic - to make she she doesn't get an infection.

When we were talking with the anesthesiologist (who, by the way, was the same guy Eric had for his surgeries) Katy was listening pretty intently. After he left, she told me that she recognized the names of the meds they would be giving her - Zofran for nausea, Fentanyl for pain, etc. Her quote "Scary..."

So, as of tonight, she is feeling OK - but her pain meds are pretty much gone now and I hope her pain is as well.

This weekend, I was a busy study bunny. I have two tests this week - one on Monday and one on Tues. Last week, I had a test in Evolution (I'm a bit nervous about that one -it was SUCH a LONG test - I was writing as fast as I could and still didn't have time to look over my anwers before time was up). Next week, I have a test in Genetics and a big ol' lab paper due. No rest for the wicked, eh?

I'm doing OK so far. A's and B's (more B's than A's, tho).

I talked last week with a Prof who runs a cancer research lab on campus. He teaches the "Cancer of Biology" class I will be taking next semester. Anyway, it looks like I'm going to do some undergrad research in his lab. If it all works out, I'll be getting lab credit for it next semester. They are doing research on Sarcomas - which is sort of what I want to get into. I want to specialize on pediatric sarcomas, but this is pretty darn close, huh?

Mike and Katy decorated the house up for Halloween - so we are getting into the spirit of the holiday. We have already broken into the Halloween candy =( Devastating for my diet. (Actually, this whole school thing is devastating on my diet. When I am stressed, I eat... I wish I was one of those people who don't eat when stressed - they get all waify and elegant... not me, tho.. I dive into the chocolate pool and bob around getting fatter and fatter... At least I am happy doing it)

OH - back to Halloween - yah - the house is looking slightly creepy. I still think it would have been cool to have had Eric's coffin. He was cremated, you know, and we did purchase the silly thing for several thousand dollars. But, we donated it.. so that is a good thing. And I suppose a real-live coffin that formerly held a real-live dead person at a house in which a kid died... well, I guess it does just reek of death-cooties. I'm not sure I would have visited that house when I was a kid - no matter HOW good the candy.

Katy's birthday is coming right on up in a few weeks - I have NO CLUE what to get her. She is going to have a sleepover and we will have a Halloween theme. I think she and her friends will contine the movie they are making - a murder mystery, of course.

Well, time for bed.

Nite nite,
Kasey

Tuesday, September 26, 2006 10:52 PM CDT

Hi everyone... School is getting kind of crazy again - it is week 4 and next week I have 3 tests and I'm starting to get worried that I don't have enough hours in the week to study AND goof off.

Seriouly, tho, school is going pretty well. I've met lots of people and I've got a pretty tight group of about 5 of us that hang together - our classs all overlap. One of the ladies is from Spain and another is from India, so we are a nice diverse group and we complement each other well. It works out nicely when we work together to do homework problems. I'm all set to get together to do study groups this week for our Zoology and Genetics exams next week.

The labs I've had are pretty cool. Today we ground up fruit flies so we could determine the gene types they had for making an enzyme. We used a piece of equipment call gel electrophoresis - the equipment used to do basic DNA testing. In Zoology Lab, we examined the jellyfish, corals, sponges and some flatworms and tapeworms. (Phyla Porifera, Cnedaria and Platyhelminthes). In Genetics, we are learning all about how to chromosomal mapping - determine where genes are located on chromosome maps relative to each other. In Cell Bio, well, today's topic was a bit over my head, frankly - I guess I need to read up on that one. It had something to do with transposons - which adds new information to the DNA and alters gene order on a chromosome.

Life in school is rapidly turning into a nice routine. It is pretty busy, but it keeps my mind active - I'm no longer sitting around the house moping and being sad all the time. I was worried that the sad feelings would make school too much to handle, but really, it is a nice distraction and gives me purpose again.

I still think about Eric daily. Multiple times a day, really.

Katy seems to be doing OK in school. She has missed a couple of assignments, and she's already been sick twice this year, tho. Mike and I had a very stern conversation with her yesterday, tho. We told her that "grace period" is over and she won't be allowed to stay home from school or be picked up from school unless she has 1) a fever over 100F and 2) diarehea and/or vomiting. We deicided we have to be really strict on this because the two days she has been home, she really didn't seem all that sick to us. And, in addition, those days she misses are the days that homework starts falling behind. She got really angry with us, but we have to do this to keep her on track this year. I know this summer, she was upset about last year's performance, so I guess we have to be firm to remind her of her committment.

Other than that, Katy has been doing pretty well. She tried out for and got a part in the fall play - she really seems to like acting. We have her set to get her adinoids out over MEA weekend in October - she was supposed to have em out in August, but it fell thru and was rescheduled. She's kind of looking forward to that - I know she has been stuffed up - which is why she wants to stay home from school. Hopefully she'll feel better after that.

What else is going on? I think I'm finally able to start looking at photos again - I haven't really been able to without crying. This means I may be able to do a little scrapbooking again. That is a monumental task ahead of me, but one that I do want to do.

Mike is doing well. Work has settled down for a little bit for him - his latest equipment is currently in route to China and Korea, so he's in a little of a "rest" phase. He'll travel out to China for most of Nov, so Katy and I are glad to have him here for a while at least.

This has been a rough week for cancer kids. Christi died last week and there are several others we are praying for:
Chase Hendrickson Looks like Chase is having some nosebleeds, so he's going to the dr. to make sure he's not getting a relapse.

Maverik Mav is also nearing the end of his journey.

Kaitlin Kaitlin is nearing the end - her family is celebrating Christmas for her.

Erin Another angel this week.

Ryan Ryan is struggling as well.

Joseph Joseph relapsed and is undergoing treatment again and it is rough.

Cortney Another new Rhabdo kid - struggling with chemo

There are so many new names...

Cancer sucks, you know?

I have to go to bed now. School tomorrow. Take care...

-K

Tuesday, September 19, 2006 10:14 PM CDT

A week and a year... I can't believe it has been over a year since Eric left us.

For Eric's birthday last week, (Sept 13 - he would have been eleven years old), we picked up a big chocolate cake with white frosting and blue flowers. The big blue frosting flowers made our teeth turn blue when eating them. We lit the eleven candles and all blew them out. We also purchased a big Lego set to build a dragon and we all helped put it together. It is way cool - it has a block that lights up and looks like fire coming out of his mouth. Eric would have liked it a lot, I think.

I actually did pretty well last week - amazingly enough. I was sad, but not overly so.

However, yesterday, it all seemed to hit me like a big brick wall and I was pretty much a wreck all day. Today was a little better.

Today, Eric greeted another little girl to heaven:
Christi Thomas
I have been following her story the last few weeks and the pictures of her during the last few days remind me SO much of Eric and how he looked during his final week. Made me cry. I think this is why I have been so emotional - reading about Christi's last few days/hours/minutes put me back to last year. It is an odd thing - very sad/emotional, but I would go back to last year in an instant if I could have Eric back with me even for a minute. I still dream about him occasionally - which is good.

School is going well. I am in week 3 and am starting to realize what I have gotten myself into. I have 3 tests the 1st week of October. I need to finish Chapters 5 and 6 homework in Genetics, two lab reports in Evolution, make a video with my lab group in Zoology by mid Nov, 2 problem sets in Cell Bio. Argh! But it is good - I'm learning a ton. Today I stuck my hand inside a cow's rumen (stomach) thru a port to get at the protozoa that live in the cow's gut. We looked at 'em under a microscope (Rumen Ciliates for those biologists out there). I also went fossil hunting in my Evolution lab today at Lilydale Regional park. I found a Brachyopod and some other little critters - sponges, etc. It was really muddy and I got to do some climbing - great fun!

Well, I need to go to bed now. Busy day again tomorrow.

-Kasey

(nite nite Eric - I love you! I hope you have met Christi and showed her the ropes - and introduced her to all of the animals - sounds like she loves em as much as you do)

Monday, September 11, 2006 8:30 AM CDT

A quick note - yesterday, to honor and remember Eric, our family spent the day watching The Lord of the Rings trilogy. I lit about a zillion candles and we watched all 11+ hours monster-slaying, adventuring goodness. I didn't go to church and somehow it felt OK.

_________________________

"I wish The Ring had never come to me. I wish none of this had ever happened.";

"So do all who live to face such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.";

- Gandalf to Frodo, in the Mines of Moria

____________________________

"I know. It's all wrong. By rights we shouldn't even be here. But we are. It's like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding on to something.";

"What are we holding on to Sam?";

"That there's some good in this world, Mr. Frodo... and it's worth fighting for.";

- Sam to Frodo, at Osgiliath

__________________________________

The Road goes ever on and on
Out from the door where it began.
Now far ahead the Road has gone,
Let others follow it who can!
Let them a journey new begin,
But I at last with weary feet
Will turn towards the lighted inn,
My evening-rest and sleep to meet.

- Frodo to Pippin (The Fellowship of the Ring - book)


-Kasey

Friday, September 8, 2006 7:28 AM CDT

Eric's Deathday and Birthday are both rapidly approaching. I have, frankly, been keeping myself either very busy or very distracted to keep from constantly having a sick, nauseous feeling. A year later, and the minute details of Eric's death still strike me very vividly - the moment of death when his heart fluttered still, the time he looked at me with unseeing eyes when I put eyedrops in, the grey/blue lips as he struggled with each breath. I was just sitting there, holding his hand for the last hours, panicked deep inside because I was screaming "help me! help me!" but there was no one to scream it to and no one to help.

But, you know, you can't live like that every moment of the day. If I did, I would would lose my sanity. So, I fill my thoughts with the mumur of the TV, the pages of a book, the chorus of a song, the fantasy of a movie - anything to push away any thoughts that would lead to the "help me" feeling.

My grandmother is very slowly recovering from her stroke. I visited in August to give my uncle a break - he has become her primary cargiver. She is currently in a Skilled Nursing Facility and is undergoing physical, speech and occupational therapy. However, her stroke was "massive" and she is 86 years old. We don't know how much she will recover, but currently she is unable to return to home. Her entire left side is paralyzed and her right isn't very strong. She can't get out of bed on her own, but she is learning to sit up straight in her wheelchair. She can feed herself with pureed food and drink thickened liquids. She tires easily, but she is keeping her spirits up - she listenes to the radio a lot.

It was good to go out to visit - I spent lots of time alone with her and with my cousin, De. In some ways, though, it was very hard - it was so much like spending hours in the hospital with Eric - except it wasn't Eric, it was my grandmother. However, while I was there, my "gotta get it done" mode kicked in and I was able to deal with everything and just do it. When I returned, however, I was in a bit of a funk for a few days. Just too similar.

Katy ended up not getting her adenoids out - she has been diagnosed with enlarged adenoid tissue - and this causes her to be stuffed up a lot and be very susceptible to sinus infections. We were going to do in on Aug 30, but Mike's family ended up visiting on Aug 31 and Katy didn't want to be convalescing while the cousins were here. So, we'll reschedule for another time - probably X-mas break.

School has started for me. I have fallen back into the classroom routine very easily - I always did like going to class. I am taking Zoology, Zoology Lab, Evolution, Evolution Lab, Genetics and Cell Biology - 13 credit hours total. The Zoology lab looks like it will be pretty fun - my TA is fun to hang with - he's a former musician who is going back to school to become a vet. He also plays World of Warcraft and other games! Gives me something to chat about with him. Cell Biology might just kick my a$$ - the first two lectures have already covered a TON of material. However, it is all good. I'm learning and I feel like I'm progressing towards something that is meaningful to me - studying cancer.

With school, however, there are some things I think I need to drop from my schedule. Since I go to school during the day, I can no longer go to my Daytime Grief Support group or the the Middle School parent association meetings. I won't be able to join the Children's Hosp Guild - since they also meet during the day. Finally, I think I'm going to bail out on the Children's Hospital Family Advisory council - it meets in the evenings, but I have a hard time going to those meetings at Children's Hosp - just being at the hosp is hard and I don't go there anymore with Eric for treatment, so I don't have a lot to contribute - and frankly, I have come to dread going to the meetings. The people are wonderful, but I just can't seem to do it.

So, that is life right now. This weekend will be rough. Mike is doing the same thing as I am - keeping busy. This weekend he is going up north to hang out with some guys - so it will be Katy and I - but Mike will be back on Sunday.

We don't really have anything special planned to commemorate Eric's death or birth. I didn't put a memorial in the paper, though I thought of it. It somehow didn't feel right for Eric. I think we will have a bonfire on Sunday, tho. Mike bought Eric a birthday present for Eric, so we can open that for him on Wednesday. Other than that, I will probably just cry a little and keep busy.

-Kasey

*** I love you, Eric ****

Saturday, August 5, 2006 3:11 AM CDT

We are back! Sorry I didn't update the journal more, but we were somewhat limited on internet for part of the trip. I took about a zillion pix, tho! So, we will for sure get some of them onto the net for everyone to see.

I'll go back and fill in in the details in a day or so - I'm a little fuzzy in the brain right now and I'm pretty sure my hours are really screwed up. To get back home took over 22 hours! Mike started timing it right when we got on the train near our hotel to head to the Narita Airport in Tokyo and stopped it when we got home. Wow - it is hard to not be able to sleep and to be packed like sardines with thousands of other people through out the day! And for me, August 4, 2006 is now officially the longest day of my life! When I woke up, it was 7:30 am in Tokyo on 8/4. When I went to sleep, it was 10:30 pm in MN on 8/4... but it was a total of 29 hours awake straight!

(OK - I know that somewhere in my misguided youth, I stayed up once for something like 60+ hours straight...I was writing a paper and a lot of other kids were writing papers as well, so we were hanging out together in the computer lab - all trying to be the one who stayed up the most hours. I'm not really sure the papers were of the highest quality in the end... How foolish is youth? To VOLUNTARILY stay awake that many hours...)

(OK - second side note... the second longest I have stayed away was the night/morning Eric died when I stayed up with him to be with him as he slept...I did nap about an hour then, and then afterwards I couldn't sleep that day, tho I lay down...)

Funny how my mind keeps coming back to that night.

ANYWAY... Our trip to Asia had its ups and downs, but all in all, I'm glad we went. I'll post more later on details, but my overall impressions is that Asia is a very weird place - interesting, crowded, polluted, stimluating, beautiful, ugly, fun and not fun all at the same time. This vacation was not your typical Disney vacation, but was an interesting learning opportunity. I'm glad we went, but I'm even more glad to be home.

My mother called me, however, last night after we returned with some sad news. My grandmother, Pat E., has suffered a stroke - it happened sometime on 8/3. She is currently in the hospital and it looks like she'll be there for at least 6 weeks. I'll call everyone tomorrow, but right now we are waiting for test results to see what the extent of damage is. She is resting now.

Gramma lives alone in San Diego - this the the Grandmother who we always visit when we go to California. She has been through a lot these last 10-15 years or so - she took care of my Grandfather John during his lengthy illness which left him unable to walk, talk, eat, etc. However, the stress of taking care of him coupled with the grief from his death in 2002 and her high blood pressure left her in vulnerable and now she is paying the price. She is a very brave lady who really doesn't deserve this.

Well, I'll keep checking in with her. I might head out to CA later this week to be with my Uncle John and we'll see what we need to do to make sure she is taken care of. I'm not sure how this will affect my plans for going back to school this fall... I might wait a semester to get her back on her feet. Knowing Gramma, she will want to return to her house in San Diego and not go into a nursing facility. She worked so hard to make sure Grandpa spent his final years at home, I think she deserves no less, but I'm not sure how we will make this happen yet.

Well, I think I'm heading back to bed now. I gotta get my hours back to normal and staying up all night typing isn't helping!

Keep ya posted...
-Kasey

Wednesday, July 26, 2006 2:33 AM CDT

Ni Hao ma? Wo hen how!

We are officially in China now. Our trip so far has been interesting! Difficult at times, but it is interesting... not average.

Highlights:
Day 1: 24 hours of travel makes one smell BAD
Day 2: Hong Kong has very nice trains and one should use them to get down from Victoria Peak - not walk down
Day 3: When a man grabs your bag out of your hands to take down the very steep/rusty stairs while in a communist country, it is scary.
Day 4: An $8, 1 hr massage is DIVINE
Day 5: (today) Typhoons that come to land close to your hotel cause rain and may interfere with shopping plans...

Day 1: We left our house at noon or so on Friday, July 21 to begin the very long trip to Hong Kong. The first leg of our flight took us from Minneapolis to Tokyo, Narita Airport. The plane left at 3 pm, right on time, and we arrived almost exactly 12 hours later at the airport. We had 3 meals and 3 movies on the flight and I was stuck in the middle seat between Mike and Katy. When we slept (for about 3 hrs), they both decided to lean on me - and I was all nasty hot and sweaty very quickly. I was going to push them both off of me (because by then I may have been a tad grumpy), but I decided it was easier to just let them sleep rather than deal with grumpy kid(s).

After arriving in Tokyo, we changed over some money so that we could get some drinks and snacks - Katy discovered a store that sold "Pocky" - a unique Japanese treat... to me, they are like pretzel sticks dipped in Almond bark of various flavors, but Mike and Katy really like em.

An hour or so later, we got on the plane to head to Hong Kong. Unfortunately, the flight was running late - and we sat on the runway for over an hour. And this plane was a little warmer than the last one In the ehd, we had 1 1/2 hrs of sitting on the plane to take off, then 4 1/2 hr of flight time. There were 2 meals and 1 movie (which I skipped). Instead, I listened to my "Pirates of the Carribean: Dead Man's Chest" soundtrack blasting on the iPod and pretended to be sitting on a sunny tropical beach somewhere with Johnny Depp (sigh...). I did sleep a bit, so that helped. So, we FINALLY arrived in Hong Kong and then we grabbed a taxi to our hotel.

I have to say here - when we walked out of the airport to the taxi stand, the heat and humidity was enough to knock off my socks! It was about 32 C by this time, which was 12:30 pm local time (11:30 am on Saturday CST). We had a very nice ride in our taxi - I say "ride" because it was just like being on a ride!!! The cab driver liked to really whip around corners and drive very fast!

Well, eventually, we ended up in our hotel - the Harbor Plaza hotel - which is on Kowloon in Hong Kong, not actually on Hong Kong Island. We had a fantastic view out our window of these amazing very tall buildings! However, we were all very hot, tired and smelly by this time, so we hurried to our room to shower and fall in to bed.

Day 2: The nice thing about travelling for nearly 24 hrs to get to Asia is that when you fall into bed, exhausted, when you wake up after 6 or so hours of sleep, it is daylight. So, we got up at 7 am (Hong Kong time) and we decided to swim. Our hotel had this amazing swimming pool - I really need to figure out how to post pix so you can see it.

After swimming for a bit, we headed to the 20th floor executive club for breakfast - where we discovered that even though our room is on the 20th floor and is an executiv suite, we weren't really entitled to be IN the Executive Club. Just a little embarrasing, but not too much. It was much too cool to hang out there and rub shoulders with the REAL executives (OK - I'm still not exactly sure why we weren't supposed to be in there, but it had something to do with the room rate we were given - we got the room at a very low price. Honestly, the front desk clerks were explaining it, but I wasn't understanding it all - and they weren't understanding us very well, either. Although English is spoken, there are still some concepts that don't really come across well, I guess).

After breakfast, Katy, Mike and I decided to go exploring. We walked from our hotel to Tsim Sha Tsui - a shopping area. We prowled around a natural medicine store where they offered to sell us teas for our sore backs or offered to grind up some seahorses for some unknown reason. We compared prices for iPods - the one I saw was pretty much the exact same price as one I saw at Target in MN before I left. (I found out later than Tsim Sha Tsui is kind of a spot for tourists to shop, so prices aren't great) We hung out for a long time in a bookstore because it was very nicely airconditioned and it was a VERY hot day. Then we headed back to our hotel for a bit of a nap.

When we woke up, it was 6 pm or so, so we decided to brave the train system. We learned how to purchase Octopus cards - look liie credit cards, but you use them to get on the trains. You preload em with money and just scan em as you pass thru the turnstiles. We then managed to take the KCR and the MTR lines all the way to Hong Kong island. We then walked thru this gorgeous park - Hong Kong Park - with these amazing foutains - and got on a tram to ride to the top of Victoria Peak. By this time, it was night and the view was amazing of all of the lights on the buildings. The buildings, by the way, are immensely tall - 80 stories... no sweat... and so many of em! Amazing. Makes you realize just how overpopulated the planet really is.

Well, once we had seen what we could see, Mike and Katy decided that we should walk down to the station again. You know, when NO ONE is walking down the peak, that should be a clue to you to NOT walk... but we did it anyway. It actually wasn't that bad - just very dark and there were lots of weird froggy sounds - the road/path was very steep and it took us the better part of an hour to get down to SoHo. By this time, Mike had blisters on his feet and we were all dripping sweaty... seemed very much like the night before!

Soho is a pretty cool area - very narrow, steep streets with lots of people/bars/tiny restaurants. Often, it is pedestrian traffic only. We eventually found a restaurant we liked - Cafe Siam - and we drank ice cold Evian and ate a couple of very good fried rice dishes. The air conditioning improved our moods immensely.

After that, we made our way back to the trains and back to our hotel room, where we crashed for the night.

Day 3: Monday - we got up around 6 am again and ate breakfast in the "proper" dining room and checked out of our hotel. At 8 am, we met up with Patrick and Xanthis, two 3M'ers who live in Hong Kong who Mike works with. Oh yah, you didn't forget that this trip is actually a business trip for Mike, did you???

With the five of us and all of our luggage, we made our way to the train and took the KCR East line all the way to the end - Lo Wu station. This is where we left Hong Kong and walked thru the station into China. The difference was immediate! Hong Kong is very clean and new and Shenzen, China is....well... not.

We waited in line for 45 min or so to gain entry to China and the air condinioning was, well, spotty. The floors were very dirty, the walls were dirty, and it was very crowded.

When we finally got thru and met back up with Patrick and Xanthis, we walked thru a fairly dingy walkway and ended up outside at the top of a very steep set of stairs which we needed to take to get down to where we would meet our drivers who would take us to Dougguan, China. As Katy and I started down, a man grabbed our bags, as if to help us take them down the stairs. However, he was rather pushy about the whole thing and at the bottom, he then demanded money of me for taking my bag down. Of ocurse, I had NO money and he got rather, um, heated about this. Of course, he's yelling at me in Chinese now. By this time, Mike, Patrick and Xanthis are next to me and we have Katy behind us. The three of them are telling this guy to piss off and go away, since we didn't ask him to help, but he rudely took my bags from me. Some words were said and Mike, my hero, threw down his bag as if he was going to pound the guy. He eventually backed off and as we walked off, he continued to yell at us. Mike, in typical Mike fashion, baited the guy by yelling "Xiexie" (Thank You) to him as we left. At this, we found out that the guy does know at least one English phrase (F*** You!) and he yelled it at us and threw his lighter and spit at us.

Ah - International Relations at its finest...

Turns out, it is very illegal for this guy to do what he did, but as there is little enforcement, one typically just doesn't every let go of one's things...

After this, the rest of our trip to Dongguan was relatively staid. Katy and I sat with Xanthis in our car and we chatted. Xanthis ended up confessing to me that the guy told Xanthis that he would be watching for him next time he came thru there and that he will have a knife and friends. Xanthis then recommended that maybe Katy and I should not go out of the hotel here in China without himself, Patrick and Mike to go with us. So far, I'm thinking that's a pretty good idea.

So... all of this and it wasn't even noon!

We got to our hotel - Sheraton Dongguan, which is fantastic, and we had a very nice chinese-style lunch. Katy and I then went to our hotel room and Mike, Patrick and Xanthis when to work for the afternoon. Katy played on the computer a bit and I read a book and it was all good.

For dinner, we did actually venture out in to Dongguan - we went thru some completely insane streets to this local chinese restaurant where we ate food that in someways was very much like we have back home, but in some ways not. The soup was made with duck - very good - the potstickers were exactly like those at Great Moon Buffet. The Peanut Chicken dish was VERY hot. The Coca-Cola was exactly the same, but the can has a pull tab top... I haven't seen one of thoses in ages.

After the excitement of the day, bed felt very good that night.

Day 4: boring, generally... Mike and I worked out in the am, then we all went to a big buffet breakfast here in the hotel. Mike and the boys headed out for work at 8:30 am and Katy and I hung out in the hotel. I worked out again... I read a book... I napped... Katy and I went swimming...I looked outside... The area surrounding the hotel is well, grimy and dilapidated, to say the least. Also the visibiity isn't very good. I"m not sure if it is fog or pollution... I have a sneaky suspicion it is pollution.. When we were at the outdoor pool, the air smells funny. It is pretty gross, really.

The other thing is that there are no birds or insects to be seen or heard here. I did walk around the hotel grounds a bit and there is absolutely no life other than what is cultivat4ed. The trees look ok, but maybe a bit sickly. It is a shame, really. And looking out from our 22nd story window, it is buidings and roads and alleys and rubble-filled lots as far as they eye can see. Most of the windows have landry hanging from them - I guess they only make washers/dryers here in china, they can't affort to buy and own them.

Well, there is a small wetlands I can see from our window, but it is pretty sickly looking, really.

So, after Mike and the boys were done working last night, Mike and I decided to eat in the Hotel for dinner. Katy, however, chose to go to sleep at 6 pm or so. We were worried that she would wake up in the middle of the night, but she didn't. So, while Katy slept, Mike and I ate dinner and then we went to the spa.

At the spa, we decided to get a massage... you couldn't beat the price - it turned out to be about 8 US dollars for a 1 hr massage each - and wow! those teeny, petite little girls who do the massaging have some powerful hands! I have to say, it was the BEST $8 massage i have ever gotten - and frankly, it was better than most $60-100 massages! So, my hotel prison here at least has that going for it.

Day 5: Today - Started out very similar to yesterday, but rather overcast. As it turns out, there is a Typhoon - Kaemi (which means "ant" in Chinese) has just plowed thru Taiwan and made landfall today a little further east of here. There is a lot of flooding in the SE coastal regions of China. For us, it means that Hong Kong has the potential for thunderstorms and high winds thru Sunday and it is kind of rainy here today.

So, no pool for Katy and I today. Also, Mike almost had me over my fear of leaving the hotel - we noticed that there were a bunch of shops about a block from the hotel. Katy and I were going to go on a field trip this afternoon, but it started raining, so instead, we came back to the hotel room.

Today was boring... I did work out again (maybe this is a good thing) and other than that I watched some CNN, played on the Game Boy, ate lunch... not much to write home about today, but I guess the day is still young, huh?

Eric has never been far from my mind on this trip. I wonder how he would have dealt with the heat (badly, I'm sure), how he would have liked Victoria Peak (I think he'd have liked it), how he would have liked the Chinese version of Cartoon Network (they are cool-looking cartoons, even if I can't understand them), and how he would have liked the pools (they are nice...). I carry around rocks in my pockets and my purse and in my mind, I talk to them as if he can hear me. A running commentary.. I also brought his leopard blankie to sleep with, so he stays near me, even though we are far from home. I miss you Eric.

Well, so far we are all safe and this is a very interesting experience. I'll keep you up to date on our progress.

-Kasey

Sunday, July 16, 2006 11:36 PM CDT

It is countdown to Asia time!

Things completed:
- Plane Tix
- Camera found
- Hotel reservations in Hong Kong and China
- Katy's Hepatitis A shot
- obtained someone to take care of mice/dog

Things not yet completed:
EVERYTHING ELSE!!! (but I'm not panicking - yet)
- I still need my shots
- Need to do laundry
- Find luggage
- Hotel reservations for Japan (tho we have one picked out - really cool Japanese style hotel in Ueno region of Tokyo
- water plants
- pack
- get entertainment for our 20 or so hours of flying each way
- pack rocks to take with us in memory of Eric
- etc etc etc

There is a ton to do in the next few days, yet we are also pretty busy this week, so I imagine we'll do what we can and the rest will just somehow happen - it always does.

Monday night is the Adopt-A-Room fundraising event. I want to thank Brian S. for inviting us - I had completely forgotten about it, so he e-mailed me this weekend about it. In case anyone wants to donate, here is the web page:
www.adoptaroom.com
This is a great cause - they are remodeling hospital rooms especially for those cancer kids who spend many many nights in the hospital. So, we'll be going to the party/dinner and will shmooze with everyone there.

Tuesday night is MN Wild seat selection night for us. We still share season tix for the MN Wild - not that we go that often, but it is fun every once in a while (what greater fun than to see men on skates beating the $^!) outta each other - and occasionally hitting a small black puck into a net...) So, we'll hang out at the Liffey (an Irish pub) for a few hours, drink some ale/cider (I personally love the Strongbow - hard cider), then go pick out new locations for our seats. Once again, hard to make changes in our life - we have had those seats since the MN Wild came to St. Paul and we saw many games with Eric in those seats. The greatest moment was when Brett Hull gave Eric his hockey stick after the game where the Detroit Redwings kicked the MN Wilds' butts. Eric was the complete center of attention that night! Everyone followed him and Mike out of the Excel center and asked to touch it and told him how lucky he was. I'm so bummed we don't have pictures of that night. But, we do have the hockey stick in Eric's room still.

Wednesday night is a night especially for Katy. This last year, she sang a solo at one of her middle school choir concerts - it was from the musical "Wicked" - and she really did an amazing job! She's got an incredible voice! I was so proud of her. Well, she really wanted to see the musical, so I got tickets. Not only did I get tickets, I bought tickets to the performance AND we have passes to go to the Cast party afterwards!!! I am so psyched! Katy and I went shopping and bought green dresses (of course, green) for the show. We'll be glam, Emerald City style.
Wicked, The Musical
I really wanted to do this for her. So much of our life in the last few years was completely about Eric - Eric was very much the center of attention - even after he died he was. Well, this time, it is all about Katy!

Thursday, we pack. Pretty self explanatory...

Friday, we leave...

In a weird way, I'm feeling good, but bad at the same time. I can't believe I'm going somewhere BIG - out of the country - without Eric. And I'm looking forward to it - which is something I haven't done in a while.. Should I feel guilty? (because I do - I feel guilty for feeling good. odd, huh)

Well, if I have time, I'll update ya on the packing process.

Oh, I made a few changes to the front page of the web page - included autopsy info and tumor info. I still need to redo the lists of kid names.... I have some people who want to be included. And, unfortunately, a few more to add to the Angel list. This cancer SUCKS - it keeps stealing kids in a most horrible way. I honestly don't know if there is a worse way to die - by having your lungs fill up with solid tumor and you can't breathe. Horrible horrible... I still have nightmares from Eric's last week and night. I have to push it out of my brain, tho, because I am afraid I'll go insane if I don't. Horrible horrible...

Well, time for bed now. I think I'll read a little tho. I'm re-reading the last Harry Potter book - last read it on our trip to Hawaii, and just now I'm able to read it and enjoy it.

And now I need something to distract - I have "death thoughts" going thru my brain at this moment. Ack.

Take care,
Kasey

P.S. For any adults out there - I found a REALLY funny British TV show. It is called "Coupling" and was on from 2001-2004 or so in the UK. (NOT the US version - I hear it is not as good) It is HILARIOUS - all about men/women/dating/romance/giggle loops/Infernos/cupbords/cushions/gravity/batteries/and squelchy sex - but very very naughty - most definately NOT for kids (although now Katy has managed to watch most of em... tho she didn't quite understand all of it...) You can see it on Tuesday nites on BBC America. I bought all the episodes on DVD. I haven't laughed so hard in years. Thank you, Jack Davenport, Richard Coyle and the other cast and writers! I needed this to kind of show me how to really laugh again. I guess it is yet another sign that I'm coming out of that pit of despair...

The Wisdom of Jeff: "Women remember, Steve. It's like they've got minds of their own."

Monday, July 10, 2006 11:47 AM CDT

The rollercoaster ride that is currently my emotions continues on its track, and the ride operator shows no signs of letting me off yet....

I guess that means that I tend to have "mood swings". I guess that is better than just sitting at the bottom of some big emotional pit of dispair, so, I guess that means I am getting better, eh? I guess...

Today is the 10 month anniversary of Eric's death. I guess you could call it his "Deathday". 10 months. Wow... Makes me sad..

On the up side of things, I continue to pay Weight Watchers and I have actually managed to lose some weight. I'm very close to having lost 10 lbs and as long as I don't screw it up this week, I'll get my "gold star" on Thursday. That makes me feel pretty good about myself. That means that I'm eating pretty well and managing to get some exercise worked into my life. When Mike was gone, I was good about running, but since he's back, I've gotten lazy again on the scheduled exercise. Today, though, I made it to Cardio Kickboxing, which I like... It makes me feel strong. I look in the mirors and shadowbox with myself. I jump and kick and sweat like crazy. And I can start to see results - at least a little. I'm beginning to see my muscles again. Granted, they are like little islands swimming in a sea of jiggles, but it is better than it was. Exercise is hard for me to get motivated to do, but when I do it, I feel good. And when I go to a class, I'm so busy that I can kind of shut off the racing thoughts, which is also good.

So, on the down side of exercise, yesterday, Mike and I went running and in the middle of it, I broke down and cried. We were talking about the 3M Optical Systems Division family picnic (which is today). That got me thinking about the last one I attended, in 2003 - Eric had been dx just a few months earlier and I was not working. I was so naive - thinking that he'd get better - it wasn't even a possiblitiy that he wouldn't. I remember how nice everyone was to him - he'd lost his hair by then - and he got a really nice prize to bring home (a robot dog he'd been wanting). Now that toy is in his room with the rest of his things. I don't think I'll ever have the heart to give his things away. So, while running, in the space of about 10 seconds, about a zillion thoughts like this raced thru my brain and all of a sudden, I found myself crying. That does still happen... things are fine one minute and I'm crying the next. I used to do it a lot, but now, not as much. I guess that is why it is kind of disturbing when it does happen - like I still don't have control of my own emotions... I hear it gets better with time. Well, anyway, I had my cry and realized that I'd been holding my emotions in and when I was done, I felt a little better.

On the up side again, I've been watching a ton of movies this summer. I LOVE movies and the best, by far, has been the new Pirates of the Carribean movie. I bought tix ahead of time for Friday afternoon, so Mike, Katy and I went and had a great time. It is an awesome movie. Katy and I TRIED to go to the midnight showing on Thurs nite/Friday morn, but it was sold out (TEN theatres sold out - amazing!)... It was kind of disappointing, since Katy and I had dressed up as pirates (and fine lookin' wenches we made, too.. argh!) I LOVE dressing up and it was fun, but would have been more fun to actually see the movie at midnight.

So, on the down side of things, after going to the movie, and loving it, I realized the next day how much Eric would have loved that movie. His room, you know, is decorated as the bottome of the ocean with lots of nets/treasure chests/swords/loot all around. He loved the Pirates of the Carribean ride at Disney - we'd ride it over and over when we were there. That was one place we made sure we left rocks when Mike, Katy and I visited Disney World this last January. I guess I hope that Eric managed to see the movie while being wherever he is now. Of course, maybe he can actually be there while they film...it might be fun to be a spirit after all... So, Saturday was a bit of a conflicted day for me - I loved the movie, but felt guilty for seeing it without Eric. In the end, I felt completly awful and nauseous and went to bed early.

On the upside of life again... We finally got our boat launched over the 4th of July weekend. That was a hard thing for me to do. The last time I was on the boat was with Eric. But, Mike, Katy and I managed to get the thing out there and actually had a really good time tubing. I did get emotional, though, because I kept looking back at the back seat, where Eric always sat, and I could almost see him with his hand in the spray. Made me cry again... The boat was always a mixed thing for us. Eric used to LOVE to ride in it when he was little (we bought it from Mike's buddy, Don, and we used to go to Don's cabin during the summer, where we would ride in the boat). We bought it, however, the summer Eric got his 1st central line. He enjoyed riding in it, but he couldn't get his line wet with lake water for fear of infection, so he never could go tubing. Well, in 2004, he had his line out for a couple of months, after his 1st round of treatment and before he relapsed, so I think he got to go tubing once. But really, the boat has been a whole bag of mixed emotions for me. It is fun, but brings back lots of memories.

<<< pause now to take Katy to a slumber party and to mow the lawn >>>>

<<<< ok, back now - very hot and sweaty and I think I smell pretty bad. It is a good thing you aren't next to me right now. >>>>

Let see, where was I? Oh, yah... the theme is rollercoaster...

Katy is now at a slumber party with her "posse" - the same group of 5 girls that have been hanging out together since 5th grade. It is Caitlin's 13th birthday this week. The girls are going to see Pirates of the Carribean (again). I can't believe Katy and her friends are 13 or soon to be. I can't be the mother of a 13 year old!

Speakig of Katy, she's going through her own emotional rollercoaster still, although she still refuses to talk much about it. She puts on the face that everything is fine. I think, though, she realizes that she is avoiding life a lot. This last week, she decided that she was going to quit World of Warcraft... cold turkey. She went so far as to say "goodbye" to all of her WOW friends and to remove the program from her computer. She then proceeded to drive me bonkers for a day because she was completely at a loss as to what to do with herself. She deided she wanted to do more stuf "IRL" (in real life), but had no idea what. I suggested laundry, dishes, cleaning her room, but those ideas were quickly discarded. Then I did actually talk with her seriously about hobbies, etc. I suggested that if she could learn moderation - set goals about how much/when she would play WOW - and find a new hobby, then she would be much better off in life. She did seem to think that was a better way to live her life. So, we reinstalled WOW and she's been playing less. She now spends more time e-mailing her friends and looking for songs to download to her iPod. That wasn't REALLY what I had in mind, but it is a start, I guess.

Another up/down thing that Mike and I have been doing: we dug up the old sandbox in the backyard and have replaced it with a garden bed. We bought a fountain of a boy watching some fish in a pond and it is the centerpiece of the garden. We built a small wall around it and I planted lots of plant which will bloom nicely and hopefully will attract som hummingbirds. It looks really nice - not completely finished, but close. This was a very hard project... digging up the sandbox where Eric spent so much time. He loved to flood the thing, so a fountain in the center of it somehow seems appropriate. It seems peaceful now, but I still cry whenever I see it. As I was mowing the lawn, I mowed around it and cried the whole time. I wonder when I'll be able to go down in our backyard and not cry anymore?

Mowing the lawn is a time where one can get lots of thinking done, you know. Well, this time, I thought about my relationship with Eric. From the time Eric went into the hospital for his surgery, he and I spent nearly every moment together. There maybe were a few hours or days we didn't spend together, but generally, we were together more than not. During that time, I REALLY got to know my son, and he was a neat kid. He introduced me to things I wouldn't have even known about...Pokemon, Spongebob, Yu-Gi-Oh and other Japanese comics, Eragon, Bartimaeus, Tom Swift, Game Boy, PS2, and the list goes on. I am not sure I have ever been as close to another person as I was with Eric. And he was taken away from me. Seems some sort of cruel joke... I take comfort, though, in hoping that he continues to be with me... I still carry rocks in my pocket whenever I go somewhere, so that I can carry a piece of him with me. I still give him an end-of-the-day report as I'm going to sleep at night (in my head, of course). I still wish he was here, though.

And somehow, I seem to have lost my other child as well. Katy is not so much a child anymore. She is a teen, and has seen so much that she is like a small adult herself. Like I said, a cruel joke...

Well, as we move forward, I'm still looking forward to some things. Our trip to Asia is pretty well planned. We head to Hong Kong on July 21st. We'll hang out in Shenzhen and Dongguan (in the Guangdong prefecture of China) for nearly a week, then head back to Hong Kong and round out our trip in Japan. We'll head home on Aug 4th.

My brother is coming to visit on Aug 11 - and we'll head out camping. Well, Mike has to work and I'm not sure Katy is jazzed about camping, so it might just be Jason and I.

Then, classes start on Tues, Sept 5 and I begin life as a student again. Scary...

Well, OK, I think I smell REALLY bad now.. even I can smell me. So, it is time for a shower.

Laters...
-K

Monday, June 26, 2006 12:27 AM CDT

I can't believe it has been more than a month since I have last updated the web page. It is not really that I have been extraordinarily busy, but I guess I tend to sleep through the night now... I used to do most of my updating when I couldn't sleep at 2am or so. I wonder why I sleep through the night more - is it because I'm not constantly listening for Eric - just to make sure he was comfortable, or still breathing... or is is that I'm still recovering from those many years of not sleeping well... or is it because of those fine sleeping pills?? (actually, I don't take sleeping pills anymore, which is probably a good thing...)

Mike is currently on a business trip to Asia - it seems like he has been gone forever, but it has been about a week. He'll be back this weekend, thank goodness. The funny thing is that when he is here, we don't really talk a ton, but when he is gone, the house seems even MORE empty. At least Katy is home during the day, so we keep each other company - well, if you call her listening to her iPod and doing IM or playing computer games keeping me company!! I do manage to drag her outside uausally once per day, so she HAS to interact with me! I wonder, is she like this because she always would have been, or is it because of some residual thing from Eric's cancer/death...she did spend lots of time on her own when I was busy taking Eric to Doctor's appts, etc... I guess I'll never know.

This last weekend, Katy and I spent lots of time together in the car. We travelled to my home-town, St. Joseph, MO. My 20th High School class reunion was held. I can honestly say that I was dreading it at first. Probably not for the same reasons as everyone else, tho. Yah, I know I've gained weight, and my car is rusty and isn't a Porche, and I have a few more lines on my face, and I haven't yet become the super-successful business woman, but that, to me, didn't matter so much. I was more worried about not crying whenever I heard the question, "How many kids do you have?" Who would have thought that would be the hardest question in the world to answer... At least I prepared my response.. In general, I said "I have a daughter who is going into 8th grade" - that is the truth, just missing some info. Then I could decide how to proceed from there. You know, it can be a major buzz-kill to tell about your dead child and the cancer treatments of the past 3 years. So, in some cases, I told, in others, I didn't. Just depended upon how I was feeling at the moment... And it is funny how feelings change so much from moment to moment.

All-in-all, it was a good time. I drank too much on Friday night (but it seems like a lot of people did, so I was in good company on Sat with a bit of a hangover). Saturday night, my high heels were WAY too high and my feet still hurt. I didn't get to talk to everyone I wanted to, but those I did talk to, I found were all interesting people. In high school, I was so worried about, well, everything, that I didn't always see the other person in front of me - I was too shy... This time, I could meet the people with fresh eyes and could see the added dimensions of who they are and who they have become... Kind of complicated, but there it is.

So, in the end, I can say I had a pretty good time. I'm glad they only come once every 10 years or so, tho, because I'm mentally exhausted from the experience!!! Oh, and the 6 hr drive didn't help either....

Life continues to march forward. Summer is here, summer without Eric. Seems hard to imagine. We are planning our trip to Hong Kong/China/Japan for mid July. Should be fun, but at times this seems like soo much work... Kind of goes along with my "I really like this couch" mentality that I get into every so often. Luckily, exercise and antidepressants help that...

Well, I need to get going - Katy has an Orthodontist appt this afternoon. Sometime this week, we have plans to go to Wisconsin to purchase fireworks. Eric LOVED fireworks, so we'll light some off this weekend in his honor. I'll probably cry, but that's OK...

Take care,
K

Friday, May 19, 2006 7:51 AM CDT

*** A very good friend of ours, Don D., was diagnosed with esphegeal cancer. Ironic, in a way, because he was SO supportive of Eric thru his illness. Once he told us that Eric inspired him to quit smoking. Now he's embroiled in this most difficult of battles.

Here is a link to Don's webpage: http://www.caringbridge.org/visit/donato

He is struggling with the chemo and the pain and nausea. I truly wish him the best!***


Wow - the last few weeks have been busy and emotional. Short version: Two weekends ago, Children's Hospital hosted a Memorial Service for all kids who have died - we attended with Mike's Mom and my Mom. The weekend was busy with both sets of parents and the Memorial Service.

Last weekend, Katy and I went to California for Mother's Day.

Yesterday, there was a wonderful Dedication Service at OH Anderson Elem. School to dedicate the bench and tree and plantings.

Last week, at grief group, I told everyone Eric's story. The whole story.

So, yeah, it has been a very emotional two weeks.

All of these services and experiences have been very useful to me - I feel that I have done lots of "grief work" and is is truly work that we have to go through. If I try to not think about the grief, only be happy, only feel good, not cry, then it all comes out later anyway - I have bad dreams, I can't sleep, I look like complete ****, I gain weight. So, even though the anticipation of these events is awful and I'm moody and sad and a complete wreck, a day or so later, I do feel a little better. I am getting better at being able to talk about Eric and not burst out crying. I am getting better about getting up in the mornings and doing something and not just feeling like I have to do it, but am sort of almost enjoying the activities. I almost look forward to working out (ok, that isnt' completely true - I mean, who REALLY looks forward to working out???)

I currently have a huge zit on my face. It started right before Katy and I went to California. It is still there - a week it has been there now. It is big and red and sits on my face. I either ignore it or I mess with it and it gets worse either way. I look in the mirror and that's all I see - Mike says he can see it, but that it isnt' bad - that that's not what he focuses on first. Katy didn't even notice it. I feel that my grief is a lot like this nasty zit. In my mind, it is HUGE and that is all that I can think about - other people know it is there, because it is somewhat visible, but they dont' know that I think that it is the only thing I think they see. I want it to go away, but I don't really know how. I wash, I talk, I think I am doing all the right things to make it go away, but I guess in the end, both the grief and the zit will end up healing on their own timelines. All I can do is wait.


The Children's Hospital memorial was very nice. The theme was butterflies - how butterflies are creatures that spend time on earth for a while, then they metamorphasize into the beautiful creatures of the air. It is sad, but uplifting at the same time. To paraphrase Sheryl Crow, "If butterflies are free to fly, why do they fly away, leaving me to carry on and wonder why?" I am so sad that Eric had to fly away, but I am so glad that he isn't in pain any longer. I still wish he could be with me, though. The service was nice, but I cried a lot and in the end, it felt a lot like a funeral - a funeral for so many children. Was it helpful - yes - I had time set aside to be really sad and to share Eric with others - so that later, I could feel better. So that I could release a little of that grief inside.

After so many months, it is amazing to me how frest the pain still is. Sometimes it feels like no time has passed at all. Right after Eric died, fall and winter set it. the outside world slowly went dormant and everything outside died. It really very much mirrored how Mike and I were feeling. It was dark and we could hunker down inside our house, go to be early, not be very active, not feel guilty about it all. Now, however, spring is here and life is waking up again. The days are longer and there is work and fun to be had outside. Unfortunately, we don't really feel much like participating yet. I think on some level, it is a disppointment - to see life returning, yet know that Eric is not returning as well. We feel kind of guilty. On one level we want to be active, be happy outside and have fun. But, reality, we don't really want to do that yet. It leads to guilt feelings, but yesterday we talked about it. We were both feeling this way, but neither of us had told the other. Now, we know we are both on the same page, which kind of gives us permission to not push ourselves to do things we aren't ready for. The boat is an example. One one hand, going boating should be fun, but both of us, right now, look at boating as this load of work. So, maybe we won't go yet. At least we are both on the same page. That is why Mike and I are good for each other right now. No one else can really understand - we have been together through all of this and we have a new kind of a bond.

Last weekend, Katy and I went to San Diego for Mother's Day. My mom came along and we stayed with my grandmother. In some ways, it was really good. I was so busy being a daughter and granddaughter, I kind of forgot to be upset about losing Eric. I guess I also know that no matter what, I'm still mother to Katy and to Eric. I still take my parenting role very seriously - even with parenting Eric. It is a different job than the one I thought I'd have, but it is still a job to do. While in CA, we went to Seaport Village - there are TONS of cute shops there, but one in particular that I love - the Wind Chime shop. Katy and I picked out some new wind chimes to take to Eric's grave. I still need to get them out there, but it is these types of things that is important to do. We didn't get a chance to go to the San Digeo Zoo this time, but Katy and I talked about it - remembering Eric's Make A Wish trip. We drove by the hotel we stayed at that time. We drove by Sea World (and accidentally ended up in the Sea World parking lot due to a wrong turn). We went to the beach and dug in the sand. All fun things - making new memories with Katy while remembering the other times as well. I'm sorry Mike didn't come with us, but it was kind of a girls weekend away. I talked for a while with my Grandmother. She is still grieving for my Grandpa, who died in 2001 after a lengthy illness. There are times she is mad at him for leaving her, but other times she is so sad. We could relate, in a way.

Yesterday afternoon was the dedication ceremony at OH Anderson for Eric's garden. You know what - the garden/bench/tree is beautiful! Everyone did an amazing job. Only Mike and I goofed. Mike sent the info for the plaque that is on the bench and Mike gave everyone the wrong dates - Mike and I feel like we are going crazy sometimes - I mean, what kind of loser parents give the wrong birth/death dates of their son? We both looked at it, and we both missed it. Duh! Anyway, we are going to have another plaque made and replace the one there.

There were kids who read some words and poems: Joey E, Billy B, Dylan G, Davey N, Eva A, Jacob K, Mikaela T. I know there were other kids that Eric was close to, but we had to limit it, huh? They read "A Pizza the Size of the Sun" and "Where the Sidewalk Ends". Sheila Franzen talked as well and the Wildwood Elem Multiage teachers donated a bunch of books to the OHA library in Eric's name - all books I think Eric would have loved. The 5th grade kids were so amazing - they listened nicely - they were polite - I was impressed. Afterwards, they all decorated cookies. It was good. I cried, of course, during the ceremony. It thing my favorite part, though, was the music! Mr. Smith, the choir/music teacher had the OHA World Music Ensemble perform with hand bells. It was AMAZING!!! Thank you to everyone who peformed, read, planned, planted, poured, etc. Thank you.

This weekend, Katy goes to Camp Connect. I hope she enjoys it and also does some grieving work. While she's gone, Mike and I are going to go to dinner at the church (dinner and silent auction, should be fun).

Well, time to get ready for the day. I have to check Katy's packing for Camp - make sure it is somewhat practical....

-Kasey

Sunday, April 30, 2006 9:49 PM CDT

Life continues...

I somehow have managed to get into and maintain a routine of sorts, but somehow I often feel like I am just going thru the motions. At times I even have fun, but somehow it is shallow.

My latest thing is to get lost in "Lost" - I bought the season 1 DVD and have been rewatching all the episodes during this last week. I also listen to the commentaries and watch all the bonus features. You know, it really is a good way to pass many hours - especially on a rainy Sunday afternoon.

I also continue to play lots of World of Warcraft. I started a new "toon" with my Dad in December (named Khayxie. She's a gnome warlock) Well, she's now level 35 - the same level Eric was as Galron when he died. I now have a the quest that was Eric's last quest that he completed. It is all kind of weird how that makes me sad - I really didn't expect this to happen. The funniest things make me sad.

Katy is slowly getting back on track at school - it is taking lots of intervention by Mike and myself, tho. I check her grades daily. Watch for missed assignments. Check web pages and phone homework hotlines for upcoming assignments. Nag. I think it is paying off. World of Warcraft and TV are still somewhat limited for her unless she earns good grades, so that may be helping as well.

This weekend coming up, there is a Memorial Service thru Children's Hospital for all of the kids who died in the last year. My folks and Mike's folks are both coming to town for this. Katy's bummed because it is just grandparents and no cousins. I think she knows that she'll be the center of attention, which has her a little worried.

Mother's Day weekend, Katy and I are going to San Diego with my mom to visit my Grandma. Kind of an annual trip, tho I missed it last year because Eric was needing me to be here. Should be fun - we will be there from Friday thru Monday - plenty of time to see the beach, zoo, etc.

Then, the weekend after that, Katy is going to Camp Connect - a berevement camp for kids who had a family member die. She's a little wary of the camp - but knows that Sarah from Child Life at Children's and Nurse Tom from Children's Hem/Onc will be there - they are both buddies. I hope it is good experience for her.

We are still planning some sort of a trip to Asia this summer, but no final plans. I'd love to see China and
Tokyo, but we may be going to Hong Kong instead. We'll see - it depends upon Mike's work schedule I guess.

I also have Katy scheduled for some cool summer classes - Paleo Camp at the Science Museum, some Computer classes - how to make a video game (which is her new choice in careers!), Zoo Camp. Looks like a busy summer for her.

I'm still scheduled for school starting this fall. University of MN, College of Biological Sciences, Genetics and Cell Biology. Still a bit nervous, tho looking forward to it. I need something more, well, MEANINGFUL in my life. Not that Lost and World of Warcraft aren't fun, but they are kind of, well, isolating. I just don't want to get so busy with school, tho, that I don't have time for workouts, friends, family, etc. Gotta maintain that balance. In my previous life (before Eric got cancer), I think I was missing that balance - I spent too much time/myself in work/worrying about work/thinking about work. I convinced myself that work was more important that home. Or forgot it. Or something. I guess I got lost somewhere along the way.

I want to write a book, but can't seem to get started. Not sure what to write about. I keep thinking about it, but never do it. weird. of course, I want to redecorate the house, purchase rental property, learn to paint, learn to make movies and read Shakespeare, and never seem to get around to those things as well. It is just easier, sometimes, to think about it and then take a nap instead.

well, bedtime now.

laters,
K

p.s. Miss you Eric - Love you very much - Mom

Sunday, April 30, 2006 9:49 PM CDT

Life continues...

I somehow have managed to get into and maintain a routine of sorts, but somehow I often feel like I am just going thru the motions. At times I even have fun, but somehow it is shallow.

My latest thing is to get lost in "Lost" - I bought the season 1 DVD and have been rewatching all the episodes during this last week. I also listen to the commentaries and watch all the bonus features. You know, it really is a good way to pass many hours - especially on a rainy Sunday afternoon.

I also continue to play lots of World of Warcraft. I started a new "toon" with my Dad in December (named Khayxie. She's a gnome warlock) Well, she's now level 35 - the same level Eric was as Galron when he died. I now have a the quest that was Eric's last quest that he completed. It is all kind of weird how that makes me sad - I really didn't expect this to happen. The funniest things make me sad.

Katy is slowly getting back on track at school - it is taking lots of intervention by Mike and myself, tho. I check her grades daily. Watch for missed assignments. Check web pages and phone homework hotlines for upcoming assignments. Nag. I think it is paying off. World of Warcraft and TV are still somewhat limited for her unless she earns good grades, so that may be helping as well.

This weekend coming up, there is a Memorial Service thru Children's Hospital for all of the kids who died in the last year. My folks and Mike's folks are both coming to town for this. Katy's bummed because it is just grandparents and no cousins. I think she knows that she'll be the center of attention, which has her a little worried.

Mother's Day weekend, Katy and I are going to San Diego with my mom to visit my Grandma. Kind of an annual trip, tho I missed it last year because Eric was needing me to be here. Should be fun - we will be there from Friday thru Monday - plenty of time to see the beach, zoo, etc.

Then, the weekend after that, Katy is going to Camp Connect - a berevement camp for kids who had a family member die. She's a little wary of the camp - but knows that Sarah from Child Life at Children's and Nurse Tom from Children's Hem/Onc will be there - they are both buddies. I hope it is good experience for her.

We are still planning some sort of a trip to Asia this summer, but no final plans. I'd love to see China and
Tokyo, but we may be going to Hong Kong instead. We'll see - it depends upon Mike's work schedule I guess.

I also have Katy scheduled for some cool summer classes - Paleo Camp at the Science Museum, some Computer classes - how to make a video game (which is her new choice in careers!), Zoo Camp. Looks like a busy summer for her.

I'm still scheduled for school starting this fall. University of MN, College of Biological Sciences, Genetics and Cell Biology. Still a bit nervous, tho looking forward to it. I need something more, well, MEANINGFUL in my life. Not that Lost and World of Warcraft aren't fun, but they are kind of, well, isolating. I just don't want to get so busy with school, tho, that I don't have time for workouts, friends, family, etc. Gotta maintain that balance. In my previous life (before Eric got cancer), I think I was missing that balance - I spent too much time/myself in work/worrying about work/thinking about work. I convinced myself that work was more important that home. Or forgot it. Or something. I guess I got lost somewhere along the way.

I want to write a book, but can't seem to get started. Not sure what to write about. I keep thinking about it, but never do it. weird. of course, I want to redecorate the house, purchase rental property, learn to paint, learn to make movies and read Shakespeare, and never seem to get around to those things as well. It is just easier, sometimes, to think about it and then take a nap instead.

well, bedtime now.

laters,
K

p.s. Miss you Eric - Love you very much - Mom

Monday, April 3, 2006 7:08 AM CDT

And just like that, spring has arrived here in Minnesota. It is kind of a subtle thing, really. There are the very slightest of tips of the bulbs starting to peek up from the ground. The snow has melted, but the grass is still matted down from the weight. The trees are still barren, but you can see the buds beginning to swell. The surest sign for me, however, is the return of the Red Wing Blackbirds. I've been hearing the finches chirping outside for over a month now, but the blackbirds really do make it seem like home - they have this unique trilling call that I've been missing. So, even though the temp is still in the 30's, I've been cracking open all of the windows at night to hear the calls in the morning.

Last week was spring break for Katy. We didn't end up going anywhere - just took a relaxing week here at home. Once, Katy and I walked up to the local Starbuck's. Once we went shopping at the mall. Other than than, we just did all of our travelling around the fictional world of Azeroth (yes, from World of Warcraft).

Katy had better get in her fill of WOW today because after today, she's grounded off of it for 26 school days. That is the number of missing assignments and/or D's and F's she has from last quarter. Mike and I continue to struggle to understand why her grades and motivation have plummeted. I understand about how priorities get offkilter - god knows, I'm feeling less than motivated to do "real life" stuff and all I want to do is read or watch TV or play games. However, Katy just seems so closed mouthed about it. She tells me she's finished work that she hasn't. She just doesn't seem to care. So, Mike and I have a new plan that involves NO WOW, TV, PS2, Game Boy, etc for every missed assignment and D or F for one day. We are leaving weekends open. In addition, after the 26 school days are up (that's in May or so), she will have 1 1/2 hrs every afternoon for only homework. She's going to have a cumulative math test in May and she's got a lot of learning to do to avoid the F from the chapters 1-9 cumulative test she just took.

Well, Weight watchers was on spring break along with Katy, so this last week was kind of an eating disaster, but still, I've lost about 6 lbs since I started. Yeah me! I have decided that my 10 lb loss reward will be a pedicure. Summer is coming, you know...

Last Friday, I did something that was pretty scary - I went back to 3M for a visit. Mike had to go in to the office for a few hours for a meeting, so I decided to tag along. It was odd because I was a visitor - I had to be signed in and escorted. I was so nervous - not sure why, exactly, but I was. I guess it is because I went on long term leave two years ago - I was afraid that either no one would remember me or that I would have forgotten everyone's names. I didn't need to be worried, though. Lots of people asked if this meant that I was back to work again - I just smiled and told them all how I was going back to school again in the fall. Lots of encouragement from everyone! I chit chatted with Mark D, Tim S, Nick R, Greg G, Trudy T, Chi D and others - it is funny how I was able to pick up some conversations from two years ago and it was like no time had gone by at all! Mike and I followed up the day with Happy Hour at Green Mill, my old Friday stomping grounds.

Ironically, when we got home on Friday, in the mail was my final paycheck from 3M.

I'm still really missing Eric. This was a really hard week, in a way. I didn't really realize it, but it is another "first" - the First Spring Break after Eric died. Makes me think about our past spring breaks...

Last year, Jason (my bro) came to visit and we also visited "the farm" for Easter. That was the visit where Eric's Hickman broke and he ended up getting a central line infection because it couldnt' be repaired for like 5 days. Before that, however, it was a good trip - complete with Easter Egg hunt. Eric got pretty tired and his leg was started to really bother him, but he did get outside a bit.

The year before that, we went to Williamsburg, Virginia - that trip was nice because it was pretty low key, but we were outside a lot. Eric's chemo was nearly done, so we were looking forward to that. He was also recovering from a central line infection then too. Katy really liked williamsburg and has asked several times if we could go back again. I liked it too, so we probably will.

The year before THAT, we went to Walt Disney World in FL. That was an odd trip, because Mike and I were separated, but we had made plans for the trip long before and we decided to go anyway. In a way, it was stressful, but at times we could just be a family also. I'm really grateful for that trip, really - it was the last family trip when Eric was well - he was dx with cancer about 1 1/2 months after that.

Every year before that, we had various trips to California or the farm. So, lots of memories.

So, today is Katy's last day of Spring Break. We will celebrate by going to the dentist. Woot! Good times...

-Kasey

Thursday, March 16, 2006 10:15 PM CST

Hmmm - I'm going to have to find a new day/time to update this thing. I used to do it a lot because I would be up half of the night - not able to sleep. I find that I am generally able to sleep through the night now. That happened shortly after Eric died. Well, at first it was because I was taking sleeping pills to help me sleep. Now I can pretty much sleep on my own now. Sometimes I look forward to sleeping because I have dreams in which Eric is alive. Sometimes I don't even remember that he died. Those are nice dreams to wake up from - to have him playing like he used to.

Anyway - here is a synopsis of our week here in the Ruegsegger household:
1) Katy's All-School play was last Th, F and Sat - they did "Guys and Dolls, Jr" - it was GREAT! These kids did such and awesome job - and it is hilarious to listen to the New York accents. Mike and I worked for several Saturdays helping to build set pieces in Feb. Mike made these tables - and at one point in the play, the lead girl STOOD on the table - Mike and I looked at each other and whispered something along the line of "ooh - she's really BRAVE". At the Saturday performance, we both worked backstage and helped out in the dressing rooms. I took a ton of video footage backstage as the kids were getting "warmed up" - they were singing this weird chant/game called "Bo Bo", but they were having a blast! Katy, by the way, was a Doll.

2) I ordered and received a new computer. It was not really a necessity - but I've been using my laptop computer all the time for several years and now my shoulder hurts - I have trouble seeing the screen, so I hunch over the keyboard and anyway, it was just a bad scene. So, I got a new PC - with a 20" Wide Screen Monitor! Sitting here, I can feel the heat! Today I spent a lot of time setting it up, transferring files and e-mail, etc. I'll feel better about carrying my laptop around now - I won't worry about losing files. I have a LOT of digital photos and I don't want to lose those. I have a bunch backed up onto disc, but not all. Those are very precious to me.

3) No sooner did I tell you about my grief group on Wed, when I forgot about it last Wed. It was kind of an accident - I was getting over a cold and kind of overslept - I figured I'd just take a quick little nap, but ended up sleeping for 3 hours. Guess I'm still tired.

4) Last Monday we had a HUGE snowstorm - we got well over a foot of snow and Katy didn't have school - SNOW DAY! I think that the last snow day they had was when Katy was in 1st grade or so. Katy had a couple of friends over that day - they baked brownies. That night, Mike, Katy and I played outside for a bit in all of that snow - we made snow angels (of course). I got snow up my pants legs, so I wimped out and came inside early. I actually had one of those weird panic moments that I still seem to get occasionally - where for just a split second, I panic and think "I have to see if Eric needs anything, I need to go inside" - it only lasts a fraction of a second, but it is very jarring and upsetting. So, I went in early. It was OK - Eric was never terribly fond of playing in the snow, so one could say I was honoring his memory by heading inside because I was cold.

5) On Tuesday morning, Katy called me from school - she was sick. She had another sinus infection - she had actually been stuffed up for a few days - but on Tuesday it was also a sore throat and icky/tired feeling. I picked her up early from school and she napped (sort of). Unfortunately, she also had a mandatory choir concert on Tuesday night. So, that evening, we all trucked over to St. Andrew's church so that Katy could sing with a head cold. Turns out, this was a concert with choirs from Mahtomedi's 2nd, 5th, 7th, and high school grades - in honor of Music Education month. The concert lasted about an hour and it was really cool! The high school has 5 choirs - my fav was the madrigal singers - they sang a song that I had sung in my choir days. (In 8th grade, I was in Concert Choir - we won the city choir championships - we were awesome). Everyone LOVED the 2nd grade choir - they were so cute! Mike and I got a little teary when the 5th grade choir was singing - that is Eric's grade. I knew several of the kids and Mike and I wondered that if Eric hadn't gotten cancer in 2nd grade, would he have been in choir in 3/4/5 grades? He liked to whistle and sing. Anyway, the show was great.

6) Wed, Katy stayed home from school yet again. I wonder how many days she's missed this year - a lot, I know. Anyway, I took her to the pediatrician and she put Katy on antibiotics and Flonase. She'll take the antibiotics for 3 weeks or so and we'll put her on the schedule to get her head examined - well, at least get a CT of her sinus cavity. The doc says that Katy is now entering the realm of "chronic" sinus issue, so we'd better check to make sure something isn't going on up there. Could be adenoid issues, could be allergies, could be post traumatic stress disorder. According to the psych, we all all suffereing from PTSD to some degree and that one thing that happens is that you immune system is weakened - seems to hit bottom at 6-9 months after the traumatic event - Eric's death in this case. So, at anyrate, better to be safe than sorry. I know the doc didn't say anything, but my absolute WORST fear is some sort of tumor in her sinus cavity. I know that Rhabdomyosarcoma isn't hereditary, but since they don't know what causes it, maybe Katy is exposed to the same... whatever it was... that caused Eric to get Rhabdo. Like I said, tho, that is my worst case scenario - I'm pretty sure she just has a reoccuring sinus infection. Generally I don't worry about it - but still....

7) Today it snowed again - about another 8 inches or so. All of our snow angels have been covered by the new snow. It is really pretty out.

8) I went to my Weight Watchers group today. I've lost a total of 4 lbs in 2 weeks. Not bad, really. I can't tell that my clothes are any looser yet, tho. I just want to fit into my jeans again.

9) Mike and I were supposed to have lunch today with Patty Brenner. She lost her husband, Lance, a few months ago. Unfortunately, she wasn't feeling well today - which I can totally relate to. So many times over the last few nonths, I would make plans and then when the actual time came to do those plans, I was just too exhausted/sad/incapable of actually carrying out said plans. Mike chatted with her for a long time on the phone. We know this road of grief - and it is not easy for anyone who must travel it. Unfortunately, you can't speed it up at all - everyone has to walk it in their own way, but it is definately a walk. Lance is buried very close to Eric at Lakeview Cemetary. Lance and his son, Nolan, were in cub scouts with Eric and Mike back in 1st/2nd grade, so it is nice to know that someone Eric knows is watching out for him up in heaven.

9) Tomorrow is St. Paddie's Day - yeah! Saturday, Mike and I are going to a real-live Austrailian St. Patrick's Day celebraton. Hehe - meaning Aussie wine/beer/and shrimp on the barbie. Should be fun!

OK - I'm off to bed now. Take care!

-Kasey

Tuesday, March 7, 2006 11:33 PM CST

Hi! I think I might be ready to start updating again. It seems I am through the worst of my "dark period" - but you never know, really. Sometimes it just wells up again, when I least expect it.

This update will be short - I'll add more later, as it is kind of late tonight. But, in short, I'm starting to get out more and do more - mainly to keep myself from sitting like a lump on the couch all day, just eating and sighing a lot, which is kind of how I spent a lot of my time from October thru February, at least during the day.

In short:
- Grief Support Group every other Wed
- Cardio Kickboxing and Yoga on Mondays
- 1 hr walks on Gateway trail with friends on Tuesdays
- Weight Watchers meetings and Psychologist visits on Thursdays
- Book club once per month on Monday evenings
- Bunco once per month on Thurs evenings
- Children's Hospital Family Advisory Council once per month on Tuesdays

That is my REGULAR schedule - I have lots of impromptu get togethers with friends as well. So, in a way, I guess I'm trying to keep really busy with regularly scheduled things to FORCE me to get up and take a shower for the day - there are usually people waiting on me or expecting me to show up, so that helps as well.

Florida was a great success - I had a wonderful time that week and was feeling really good, but when we returned, it was ROUGH. I was SO missing Eric. We did do a really cool thing, tho. We took rocks from Eric's funeral and whenever we saw something that really reminded us of Eric, or went on a ride Eric would have liked, or we remembered doing something with Eric, then we left a rock somewhere in that spot. It was quite a challenge, let me tell you, to leave rocks in Disney World in places where they wouldn't get cleaned up! For instance, one day, we left one inside a bookcase in the "Hollywood Tower of Terror" ride (for the record, Eric would have HATED that ride - in fact, LAST Jan, in California, Eric waited in line with us for an hour, and then chickened out at the last minute - but we remember it so well, that we just HAD to leave a rock in rememberance). Anyway, we left a rock in a bookcase. When we went back two days later, it was gone - had been "cleaned up". So, we tried to leave rocks in places where they'd be safe - in a pond with other rocks; inside a cage by the "Dino Dig" in Animal Kingdom; among the gold and jewels on the "Pirates of the Carribean" ride (that was a challenge - to toss a rock and not get caught by the ride operators!); in the landscaping outside of the Epcot "Living Seas"; in a plant at Joe's Crab Shack in Orlando; next to a cypress tree in which a Bald Eagle was roosting in the Florida swamps - we took an airboat ride one day. It was pretty fun and a great way bring Eric with us on the trip.

But, like I said, coming back was hard - the weather was so awful and I was so sad.

I still get very sad, but it is starting to be a different kind of sad - hard to describe, really.

Other news:
- Katy is now wearing contact lenses (as of today)
- Katy is performing in the Mahtomedi Middle School play "Guys and Dolls" this weekend.
- Mike spent nearly 2 weeks in Korea and Japan in Feb and looks like he'll get lots of repeat trips in the next few months. Lots of work to do in Asia!
- I was accepted at the U of MN Biological Sciences department - I'll be working on my BS in Genetics, Cell Biology and Development starting this summer! I'm considered a senior, but it looks like it'll take 2 years to get my degree because I have so much biology to catch up on. So, I'll do the part time student thing, which suits me fine - I can be here for Katy after school that way. After that, I'll do grad school for another 7 years. So, we are looking at 9 years or so of my life planned out until I get my PhD. At least I can get a lab job and do reaseach during that time! Funny thing is that Katy should get her undergrad degree the same year I get my PhD! We might go to the same University! hehe
- I worked on the Elementary school yearbook and Eric will definately have some pictures in there. I was worried that he'd be forgotten.
- Finally, Eric's grave marker was delivered last week and is installed. So, in a way, it is the closing of another phase. You know, this Friday it will be exactly 6 months since Eric died. A very rough 6 months for us - I sure hope it was happier for Eric. He sure deserves some peace and happiness....

Well, as I said, I think I need to go to bed. I hope to update again. I have lots of Eric stories I want to share - I'd like to get them down into writing so I can make sure they are remembered.

Take care,
Kasey

Saturday, January 14, 2006 10:28 PM CST

Hi everyone!

Super quick - hope everyone had a nice New Years - it is hard here - I hate leaving Eric behind in 2005 while we move onto 2006. Very rough for me. Enough that pretty much all I want to do these days is sleep - well, I've been fighting a cold/virus thing, so that doesn't help.

Tomorrow we are off to Florida to Disney World. Should be a nice week for it. My Mom, brother, Gramma, Aunt, Uncle, Cousin will all be there. Should be fun, but once again, I feel slightly sad because we are leaving Eric behind.

I think we'll be taking a bag full of little rocks to Disney - any time we see a place that Eric would have really liked, or that reminds us of him, we will leave a rock in his honor.

Sorry my entries have been so lame lately. I have so much to say, but don't know how to say them. I am often filled with sorrow - and writing makes it just too hard to deal with. I know that if I can get past this rough spot, the stories will flow. Bear with me.

-Later,
Kasey

Friday, December 30, 2005 8:47 AM CST

I hope everyone is having a very nice holiday season! Things are fine here. Nothing really too much to report, actually.

Christmas was fine - we spent it on the farm with Mike's Mom and Dad. One of Mike's brothers was sick, so there were 5 fewer people in the tiny house than we were expecting - they stayed home for the holiday. It was nice to have the extra space, but somehow the whole day seemed awfully quiet. We got together with Dave (Mike's older bro) and his 3 kids on Christmas Eve, but they spent Christmas Day with their mom. So, Christmas Day was VERY quiet. Not really the same, tho. Funny how when it is loud, chaotic and crowded, I'm always cringing - kind of wanting to get away from the hubbub, but when it is not there, I really kind of miss it.

We opened our own gifts here in MN before we left, so that we were able to use our gifts on our trip - fuzzy sweatshirts, iPod Gift Cards, books.

The whole holiday season has been a little sad, with Eric being gone. I think about him a lot - what would he have wanted for Christmas? Would he have gone out into the snow to play? How much Pumpkin Pie would he have eaten? (Eric loved Pumpkin Pie!)

While at the farm, Jean and I talked a lot about Eric - we also looked at pictures and videos I had of him and Katy - Eric's Make-A-Wish trip, our Hawaii trip, funeral. It was good to watch the videos - we laughed when he was feeding the dolphins and we watched Eric worrying about Dad being safe when lighting fireworks. It was good

After we got back, we have spent lots of time playing World of Warcraft - Mike and Katy's ideal day! My Dad now has a WOW account and is learning how to play - we are all excited about having him online with us. I started a new Character (Khayxie) to help him out. It is fun starting out again.

Wednesday, while Mike and Katy were playing, I spent the day picking up Eric's bedroom. During the last three months, Mike and I have been putting things that remind us of Eric into his room - but not very neatly. There were clean clothes I hadn't put him away. There were piles of toys - his Imaginext sets - that were out of the boxes and thrown into a corner. Well, I took the day and tidied up. I was amazed - I wasn't overly sad, really - it was just like when I used to pick up the kids' rooms when they were little. I straighted his closet and repacked the toys. Now his room is cozy again (except his desk is still messy - one thing at a time, I guess). I have spent the last two evenings sitting in Eric's hanging chair, reading. His room is a nice cozy reading spot now. That night, I found myself emotional and crying, but it was OK.

Yesterday, Mike and I made a trip to the bank. I put all of Eric's birthday money and the cash he had in his room into his savings account. We also took out all of his savings bond and cashed in three of them (ones with only Eric's name). The other savings bonds - with Mike's name on them too - we'll transfer to Katy. We also deposited the rest of the money from the many cards we have received after Eric's funeral - some to the fund, some to us. Now we need to finish up the Thank Yous - If you haven't gotten one, it is still coming... I'm pretty amazed at the number of cards! Over 300 cards! Once again, I didn't know I knew that many people! I guess Eric touched so many people.

So, the trip to the bank was very sad for me - I started crying in front of the teller - she was really nice and understood. I was pretty amazed that I was still able to do that - cry in public. I said I should be OK - it has been long enough, but she was nice and said, "It'll never be long enough".

I guess that kind of sums it up. We have some plans to get together with friends for New Years Eve, so that'll be good. Katy's going to a slumber party tonight. Katy's slowly getting caught up with her homework - she has a plan on how to get it all done by Tuesday. I'm, once again, hanging in there.

Happy New Years!
-Kasey

Monday, December 19, 2005 10:02 AM CST

I seem to never find time to update anymore - the holiday season is so busy!

Mike made it back from China in once piece - and not too worse for wear - maybe a slight cold, but hard to say just yet.

Katy and I had a nice peaceful week without Mike - tho she did get sick (again) - head stuffiness/earache/cough. She's sort of feeling better now, but I think we really need to have a talk with her about washing hands better. Of course, probably some of this may be the sorrow buried deep within her that she denies having.

I put a nice colorful (fake) pointsettia plant on Eric's grave - but I'm pretty sure it is buried underneath the snow. We ended up with about a foot of snow (I would guess) here in Mahtomedi - it sure looks pretty and will make for a very white Christmas here. I'm not too stressed about all the snow on Eric's grave because I'm sure his spirit isn't hanging out in some old cemetary where it is cold and snowy. Eric was never one to like to be cold, so I'm sure he is hanging out here at home with us. If I close my eyes, and listen hard, I can almost hear his laughter, his breathing, remember his scent. I can almost here the television blaring out cartoon network or the silly little songs from his Game Boy games. Gosh, I really miss him.

Luckily, Katy is still around to help break the silences - she's suce a chirpy thing - pretty excited about Christmas and listening to the local top 40 radio station (how many times can they play "Golddigger" anyway???)

We are doing OK here. Sad time of year, but we are hanging in there.

Happy Holidays to everyone!

-Kasey

P.S. Another angel - Rob Faulkner - age 20 ARMS passed away Dec 15, 2005. I'm very sad again...
Rob Faulkner

Tuesday, December 6, 2005 9:45 PM CST

Hi. Today I finally got out of the house in a timely manner - a call yesterday from the head of the middle school PTO let me know that they needed some help with the middle school book fair. So, I packed up with Katy this morning and got to the middle school by 7:30 am (well, by 7:35 am - so I was a little late....)

It was a nice morning. I love books and I got to spend the entire morning in a room filled with books, the library. I got to know a few of the middle school kids, and chatted with some moms and the librarians. It was nice, and for once I wasn't thinking of Eric constantly.

I did work the fair until noonish and when I got home, I was EXHAUSTED. I am way out of practice with socializing for hours on end. I enjoyed being with people, but was tired out by it all, so when I got home, I zonked for about a two hour nap.

One of the issues also may be that I am slightly anemic. You may recall that I have gone to donate blood/platelets several times in the last month. Well, each time, I have deferred because my hematocrit was too low. This means that, for whatever reason, my iron levels are too low. I don't understand. I'm taking vitamins. So, now I started extra iron pills. Now I just feel wiped out and my stomach hurts. I guess it is time for a trip to the doc. I'm eating well - more red meat, more salad. I just wonder what is up. Does grief do this type of weird thing?

I'm down to thinking about Eric only about a zillion times per day. I don't cry as much, but I do sometimes. At least every day. Usually I'm alone, so that's good. And it is quick - a quick cry. I'm starting to get to where I can smile about some memories too - goofy faces he'd make, how he'd laugh, stuff like that.

I was panicked yesterday and today, tho. I just finished reading the book "Inkheart" and I remembered that I had just started reading the book "Dragonrider" out loud to Eric before he died - I had only gotten a chapter or so into it. Dragonrider is written by the same author as Inkheart, and I mentioned that to Katy - so both she and I want to read it. Well, I looked in Eric's room and it wasn't there. Then I checked downstairs - not there. I searched and searched the house for two days! I was panicky - I know I can get another copy, but that copy was special! Well, I finally found it about 1/2 hour ago. I had been searching for a paperback, the copy we have is hardcover and it was on Mike's dresser, under a bunch of stuff. I am very relieved.

We have put out some holiday decorations now. Some lights, two Christmas trees, nativity scene, candles. Katy and I decorated one tree with red/green lights and apple ornaments - pretty safe. The other tree has a small selection of our family ornaments. I just couldn't bring myself to go through all of the Hallmark ornaments we have collected over the years. While I want to remember the reasons we bought them, they bring back too many memories all at once and I cry and cry. So, a small selection was pretty much all I could handle this year.

I've started Christmas shopping and I keep finding all of these gifts that Eric would have loved - books, Legos, etc. I did sign up to be a Christmas Angel - send gifts to the family of a Rhabdo child - so that helps - I can buy toys that Eric would have liked and send them to him. That does help. But I still miss shopping for Eric - I loved his toys! I always was kind of a tomboy. I'm still having fun shopping for Katy also.

Well, that's about it for now. I still need to scan that article. I'll get to it. Tomorrow I'm working the book fair again in the morning, then I'm going to going to an event for a CHA Guild - Children's Hospital Association. I'm going to join the guild as well - they raise money for Children's. Tomorrow night is a Christmas party. Should be fun. Thursday night is Bunco for me. Friday is Girl Scouts - and Mike goes to China for a week. Saturday is the Tree-Lighting Ceremony at St. Jude's and another Christmas Party at a neighbor's house. Lots to do. I'll have fun, but in a way, I'm almost dreading it - too much to too in too short a time. Well, it'll be over too soon, and I'll wish I had someplace fun to go, so I'll just flow and enjoy the season.

Wish me luck

-Kasey

Eric: I love you and miss you. I know you hear me talking to you all the time, but I just want to remind you - I love you with all my heart. Love, Mom

Friday, December 2, 2005 12:01 AM CST

Hi - Just a quick note to let everyone know I am still alive.

Our trip to my parent's house for Thanksgiving was nice - we ate too much and put up x-mas decor on mom's house. We played games and watched movies. It was good.

Unfortunately, I wasn't feeling well when we returned - cold thing, lost my voice, wasn't sleeping well. All of that, along with really missing Eric put my into a bit of a funk earlier this week, with Wed being the worst. Katy was home sick as well, so at least I had company. Just was kind of sad and non-motivated to do anything except sleep.

But yesterday, I started feeling better. I had coffee with a friend in the morning (and found out her daughter was dx with Hodgkin's Lymphoma about 2 wks ago). Met with Barb, Eric's massage/energy therapist from hospice and found out that she had also lost a son to Rhabdo - many years ago. Then met with counciller with Mike - so I had a good cry and now I feel better, in a weird way.

This weekend, we are going to put up X-mas decor here at the house. I think if it was up to me, I wouldn't bother - but Katy really wants it - she wants things to be "ultra normal" and I guess that is OK too. It'll get my butt off the couch at least!

For anyone living in Minnesota, there is an article in Mpls/St.Paul Magazine about Adopt-A-Room - Eric's picture is in there! I'll scan the article and put it in.

More later,
kasey

Monday, November 21, 2005 9:03 AM CST

Oops - I forgot to update last week. Sorry....

I THOUGHT about updating a lot, does that count? No, not really I guess. Well, so now I have a lot to say...

I did end up going to talk with the head of graduate studies last week for the Microbiology, Immunology, Cancer Biology program at the U of M. It was pretty disappointing for me - turns out I am NOT eligible for admission for fall 2006. One - I need to retake the GRE (Graduate Records Exam) - a truly horrible test that lasts all day to see what you know. The next date the test is offered is in March, well after the admissions deadline for the MICaB program. So, I guess I'll sign up for that.

The other piece to the grad program is that I don't have enough (any?) reseach experience, as it turns out. I guess my high school research project (while good and earned me many awards including a trip to the International Science and Engineering Fair) is just a little dated and doesn't count toward experience. My 3M employment doesn't really count either, I guess. I was doing a lot of project engineering, but not a lot of "hypothesis: if x, then y will happen" and then do lab work to prove.

I was given some ideas of what to do, however. It was suggested that I take (another) year and take a few undergrad classes and get a job/internship in one of the microbiology laboratories at the U of M. While appealing in one sense, it is starting to sound like a whole lot of WORK... Mike and I have been talking and I'm taking a few weeks here to look at more options.

I guess I don't really want to jump into a full time job yet (especially one that doesn't PAY anything). I was hoping that grad school would mean START in the fall and take some classes for a few years, then do lab work. I liked the idea of being home when Katy gets home - I think it is important for her to know that she's got a nice, stable household here. And important for me too. But NOW, it was suggested that I jump in and start logging some major hours in a lab.

The other thing is that this program is a 5-7 year program. So, let's start counting: apply for fall 2007 admission + 5-7 years = PhD in 2014! Then post-doc studies! THEN, maybe do Rhabdo research. Seems a little long.... No wonder there are no cures for Rhabdo yet! Takes forever just to BEGIN to study the disease! As a mom, this is kind of frustrating....

And then, as a new twist, Mike and I have begun some discussions about future and we both agree that at some point, another child should be in it. Not sure how or when, but it seems right.

Now, don't get me wrong - this is a very ROUGH thing to think about - I could NEVER EVER replace Eric. Just thinking about that makes me very sad and somewhat ashamed, but Mike and I feel that we have a lot to offer a child. Of course, we are in NO HURRY.

And we aren't even sure if it is possible - Mike had a vasectomy a number of years back. So this isn't exactly going to be a spur of the moment thing - it would take a LOT of effort and help. So, we still have lots of time to think about this. Maybe in a year or two. Maybe it won't happen.

So, how does grad school fit into this? I look back at my "career drive" when the kids were little and wonder why it seemed so important then. Was it really worth it to have the kids in daycare all day every day? Maybe some sort of compromise would have been nice - shorter days, fewer days. I'm glad I've worked and would like to again, but not at the expense of my family.

OK - onto other life things:
Mike, Katy and I saw the latest "Harry Potter" movie on Friday! It was VERY GOOD - but kind of scary for kids. I brought one of Eric's rocks, so we felt like Eric was with us, but we all agreed that Eric would have been scared silly! He probably would have left the theatre within the first 10 minutes of the film! He was funny that way - he really didn't like movies in the theatre. Too BIG, too dark, too loud - he'd be really scared. He was the kids that was scared in "Monsters, Inc." because the little girl was scaring the monsters! He left in the middle of the the "Scooby Doo movie" and at Disney World, left in the middle of the "Bug's life" movie/attraction. Mike, Katy and I had a good time remembering these things and it made us feel warmly about Eric - how he was so tough, yet was so easily affected by movies - proving that inside, he was still such a sweet, gentle person.

I continue to get out of the house occasionally - last week and the week before, I actually made it to the YMCA to work out! And this weekend, Mike and I went running! For the first time in a LONG time. My weight has gone up and up over the last several years and with the holidays coming up, I figured it is time to do something about it. I'm not thrilled with it, but neither am I overly stressed anymore. Another change in me over the years. I used to HATE my weight and physical form. It was never good enough. And while I'm not thrilled now, neither am I feeling obligated to diet. BUT, there are limits....

We have made some plans to go to Florida in January - Disney. My whole family is going: Mom, Stepdad, Brother, Gramma, Uncle John, Aunt Jan, Cousin De and Jon. And Mike and Katy. We decided that we'd get together for Christmas in January and go somewhere warm. In a weird twist, we'll be staying in the same resort Mike/Katy/Eric and I were in in March 2003 - before Eric was dx. That'll be a little stressful, but not too much. I love Disney, and it'll be good to remember a having a good time with Eric and Katy.

Mike, Katy and I continue to play World of Warcraft. We had a WOW kind of a weekend this past weekend. LOTS of hours put in. It is fun - we rearranged the "formal dining room" (i.e. computer room) again, so all three of us are in there. We all started new "horde" characters, so we are hanging out together, helping each other with quests and having fun. My Dad will be starting WOW soon as well. He's getting Broadband cable and should be playing by December! (In case anyone out there plays, we are on the Cenarius server. Alliance chars: Khayzhe, Cinas and Hammerthief. Horde chars: Khaysea, Kiinas and Stinkysnice - guess who plays "Stinky"....)

This Thanksgiving, Mike, Katy and I will be heading down to St. Joe, MO - the land my my childhood. Should be fun, but no internet! Oh no! What will we do?

Well, just got a call from school - Katy's not feeling well. Better go get her....

Happy Thanksgiving,
Kasey

Friday, November 11, 2005 9:07 AM CST

Many times I come here and start updating my journal. Then I get distracted. Or I kind of just feel empty - like there really isn't anything going on of note, so I just don't ever finish. But really, there is a LOT going on right now.

Today, in an hour, I am going over to the Elementary School where a tree is being planted in memory of Eric. The ceremony will be held in the spring, but the tree is getting planted today. Mike and I have had lots of mixed emotions about this. We are glad and grateful, but it is hard to talk to the planning folks on this. They are so excited about it, but it is rough on us. I want to see this happen, but I don't the reason why it has to be in the first place - because Eric is no longer with us.

I think these weird mixed emotions will eventually settle, but right now, it is rough. Just like the Thank Yous - that we are STILL working on. Every time I see the pile of cards, pictures, stamps, etc., I first feel very guilty - because I know that I'm putting off something that I do want to do - I'm grateful for the gifts/memorials/thoughts/poems/cards, etc, - but then as I sit down to it, I just get sad. And then I get headachy and can't concentrate. And I cry. So, when I look at the pile, I just feel guilty for a while, then I often just turn away and do something else. To get my mind off of my loss.

Yesterday, I talked with some nice folks from the IRS. When Mike and I set up the account at the bank for Eric's Memorials, a tax ID was set up for Eric's estate. Get this - Eric has an ESTATE! Now, I find out that I was supposed to have "dispersed" the Educational IRA's and Coverdell ESA's in Eric's name within 30 days of his death. oops. We also need to do something with his savings bonds, savings account, etc. Based upon how much interest and income we get from those, I need to file a tax return for Eric's estate by April 15. Gads! This is complicated! I don't expect that there will be enough to have to pay taxes on, but it is supposed to be reported. Luckily, I found out that Life Insurace benefits are not taxed.

Next week, Mike and I have a meeting with Dr. Messinger, from Children's. We are going to review the autopsy and all the biopsy data he has received since Eric's death. I don't expect to see anything we didn't already know. I already got a copy of the autopsy report. They looked at his right lung and it was pretty much completely full of tumor. It was a miracle that he was able to breathe at all. So, there is another meeting that will be kind of weird.

This week, Mike and I went to counciling together. We have found that in our day to day lives, we don't always talk about what is bothing us - usually sadness about Eric - so it kind of builds up. Katy is kind of the same way - we don't talk much about the sad stuff because we are all convinced that we are the only one feeling it. Then it builds up and builds up and pops for me as crying at odd times. Well, by going to counciling, we are able to set aside a specific time/place in which we can just talk abou those sad feelings and get them out. Turns out, often times, we are thinking about the same things - or slightly different versions of the same thing. It gives us a release in a controlled manner. Should be good, I think.

Next week, I have an appointment with the head of the Microbiology, Immunology, Cancer Biology department at the U of M. I am thinking of applying to grad school - I already started the application process - for the fall semester next year. I need to have all of the documents in by Dec 15 (yikes!), but I'm going to chat with the department head to see if this is a good idea, or if I should take a year to get my feet under me. I have taken Genetics, Biochem, etc, but it was SO LONG ago, the field has changed. And I took the GRE in 1991 - is that still valid - I'd hate to have to try to take it now - I'm not sure I'd remember how to do any Calculus or Physics! (
What is an integral again???) But, if I DO manage to get accepted, it is a 5 year program to get a PhD. They pay you roughly $22,000/year to attend school and have health benefits. Not bad - get paid to go to school!

Here is a link to the program:
Microbiology, Immunology, Cancer Biology Program

Cool, huh?

Katy's doing well. She decided to drop out the the Children's Hospital Youth Advisory Council. I have tried to talk her out of it, but she'd pretty adament. She claims she has nothing to offer them - but I think it is deeper than that. Today is the Middle School dance, so she's going to that, and then spending the night with a friend. The quarter ended last week, so we'll be getting her grades next week. I think she did OK in the end. I know she was spending lots of extra time at school to make up science labs, spanish homeworks, math tests, etc.

Oh, today is Girl Scouts - so I guess I have to figure out what I'm doing with the girls the afternoon!

Well, I'd better get showered and head over to the school for the tree planting.

-K

Thursday, November 3, 2005 12:31 AM CST

Well, another month has come and gone - hard to believe, really. Sometimes the days seem to go by really slow, but then I wake up and realize that it has been more than 7 weeks since Eric died.

The healing process has been slow for me. Maybe slower for me than Mike or Katy. Katy and I talked last night and told me, for her, it is time to move on - she doesn't want to visit Eric's grave becuase it is over and done and she doesn't want to dwell on it. I, on the other hand, do seem to want to dwell. I'm so afraid that some of my best memories of Eric will fade or be forgotten, so I find myself (especially at night) going back through different events and times and pictures in my head. Sometimes I find that I'll go a whole day and not cry - in fact I'll be busy and not really think about the gap in my life that is where Eric used to be. Then I'll sit down and kind of be proud of myself that that. Then it will slide into feeling bad that I am proud of myself because I should be missing him. Then I DO miss him. So, whenever anyone tells you about the stages of grief, the funny thing is that there are no real "lines" between" these stages - you don't finish one and move to the next in a day - you keep jumping back and forth - swirling thru the different stages - feeling eveything at the same time. Mike likened it to an oil slick on the parking lot. You see the different colors all swirling - every color is a different emotion, so when you look down, you see this funky pattern of colors/emotions. The next time you see it, or even as we watch, the colors change and more or one color will appear, while less of another and different colors will touch and then separate. Emotions are like that all thru the day.

Last weekend was Katy's birthday - the big one-two (12)! I think she had a good time - had friends over on Saturday - we went to Camp Snoopy for a few hours, did old-time photos (the girls dressed up like pirates) and then we came home for dinner - Donatelli's delivery - and then the girls disappered upstars for the night to watch movies and eat candy and giggle. She was pretty tired the next day, and on Monday, Halloween, she still hadn't totally recovered. We ended up picking her up from school because she had a migrane headache :(

So, after napping, we were up and ready for Halloween here at the house. Halloween is kind of a big deal, and we continued the tradition - thinking that Eric would like the look. We change all the lighbulbs in the house to weird colors, put up spiderwebs and a giant spider, and carved some pumpkins and make a scarecrow. We also put a walkie talkie in the scarecrow so that it can "talk" to people as they walk by. The new additions for this year were the fog machine and the thunder/lightening machine. Pretty cool!

Mike and I carved an extra jack-o'-lantern and took it up to Eric's grave. We though he'd like to have his very own pumpkin. Of course, I cried, but it was good.

Last night, St. Jude's church had mass celebrating the dead - and Eric was one of the people honored. So, Mike and I went to mass - for whatever reason, I was a total wreck and cried pretty much the whole time. They have a book with Eric's name caligraphied into it and they had candles for each of the 16 parish members that died this year. It was very nice - just very emotional.

Well, I am TOTALLY stressed right now - not sleeping well. Part of the reason is that I feel that I should not be taking sleeping pills any longer, so I am trying to wean myself off them. This makes me wake up about 2-3 times per night! Last night's issues were bills and thank yous. We were working very dilligently on the thank yous, but got stalled out after our trip to the farm. Now I feel guilty! Also, bills are bothering me. We have some outrageous bills and I'm trying to figure out how we reduce those interest rates. I'm still thinking of going back to college, but not sure how that will work if we need to make more money.... Anyway. I'll just do the bills I can right now, and MIke and I will later today look at selling some 3M stock to help reduce the load. It'll work out.

So, off to bill paying now....

-kasey

Tuesday, October 25, 2005 6:19 AM CDT

Good Morning - Here is something everyone might be interested in from the Candlelighters Childhood Cancer group - they put up the big Christmas Tree in Washington DC.

Dear Childhood Cancer families and friends,

Candlelighters' National Childhood Cancer Hero Tree will be standing tall for the entire month of December in the Old Post Office Pavilion, 1100 Pennsylvania Ave., Washington DC. Once again, we are inviting families and friends of children who have, or have had cancer to add their child's name to the national tree. This brilliant tree, decorated solely with the gold ribbons for childhood cancer stands as a reminder to the thousands who view the building daily, of the on-going plight that this disease has on our nation's children. Together, we can build awareness of the impact of childhood cancer, through your participation in this event.

For those who haven't yet placed their child's name on a ribbon, please visit our website at www.candlelighters.org and click on the Tree link on the home page. As in previous years, ribbons are $5.00 each. This year's tree will be decorated on Nov. 19th so we are asking that you purchase your ribbon prior to that date if at all possible.
Personal tributes - in memory of, or in honor of your child can be included on Candlelighters' website.

The annual tree lighting ceremony will be held Saturday Dec. 10th at 6:30 PM EST. We encourage all of those who are able to attend to join with us.
There is no fee to attend. To be assured that we have adequate food and toys for the children, we just ask that you register your family's attendance at the above website, or call Candlelighters National Office at: 800-366-2223.

In addition to the tree lighting, this year's event
includes:

* Guest Speakers: Liz and Jay Scott, Alex's parents from Alex's Lemonade Stand (along with the Lemonade
Stand)

* Singer John Taglieri * Hilby the Juggler * Toys sponsored by Starbucks for all children attending * Free tours for children and their families to the Bell Tower Observatory to view DC. * Handmade quilts by Quilts4cancer and hats from the Elizabeth Carr family

Help us reach a goal of 1,000 childhood cancer families attending! Hope to see you there!

Please forward to other listservs! THANKS!!

Ruth
Ruth Hoffman Executive Director, National Office Candlelighters Childhood Cancer Foundation
1-800-366-2223
rhoffman@candlelighters.org
www.candlelighters.org


___________________________________

Well, we had a nice trip back to Wisconsin this weekend. The weather was gorgeous - lots of sun and the leaves were very red/gold/orange and amazing. In addition to us, Mike's two brothers and their families were there, so it was a full houuse - lots of kids running around.

It was kind of emotional for us as well, though. We looked at sympathy cards with Mike's mom - and that made us cry. Mike and the boys set up targets and did some target practice with the rifles - Eric just LOVED doing that, so it was kind of hard to watch the other boys there at the fence and Eric not being with them. We brought Eric's winter coats so that we could pass them along to another cousin. In one of the pockets was a small flashlight that Eric had left. Seeing that made me cry. So, lots and lots of memories - they are good memories, and I don't want to forget them, but they kind of come at me unexpectedly and then I miss Eric.

But, the whole weekend wasn't spent crying. On Sunday, Mike's Aunt Carol, cousin John and Uncle Larry as well as Aunt Mary Clare visited the farm. We had a nice visit with them and Mary Clare is always telling jokes and laughing - it is impossible not to laugh with her around! The ladies went for a nice walk in the woods and had a great time.

Katy and the kids, once again, had a blast on the golf carts. Mike and his brothers did some work around the farm to get it ready for winter - prepped tractors, moved stuff, fixed tires, cleaned out the garage, parked the lawnmower, etc. And Ernie and the boat and now ready for winter - thoroughly stinky from moth balls and mouse traps.

Well, time to get Katy ready for school! Today is a busy day for me: Lunch with Deb B., Girl Scout store, donate platelets.

-K

PS - I'm attaching a speech that was made by Bill Watterson, the author of Calvin and Hobbes", to a graduating class in 1990. Calvin and Hobbes has always been one of my favorite comics and was Eric's also. Calvin and Eric are SO much alike! But this speech is really very appropriate, I feel - especially for one who is trying to find happiness and meaning in her life.

Speech by Bill Watterson
Kenyon College, Gambier Ohio, to the 1990 graduating class.
SOME THOUGHTS ON THE REAL WORLD BY ONE WHO GLIMPSED IT AND FLED
Bill Watterson
Kenyon College Commencement
May 20, 1990

I have a recurring dream about Kenyon. In it, I'm walking to the post office on the way to my first class at the start of the school year. Suddenly it occurs to me that I don't have my schedule memorized, and I'm not sure which classes I'm taking, or where exactly I'm supposed to be going.
As I walk up the steps to the postoffice, I realize I don't have my box key, and in fact, I can't remember what my box number is. I'm certain that everyone I know has written me a letter, but I can't get them. I get more flustered and annoyed by the minute. I head back to Middle Path, racking my brains and asking myself, "How many more years until I graduate? ...Wait, didn't I graduate already?? How old AM I?" Then I wake up.

Experience is food for the brain. And four years at Kenyon is a rich meal. I suppose it should be no surprise that your brains will probably burp up Kenyon for a long time. And I think the reason I keep having the dream is because its central image is a metaphor for a good part of life: that is, not knowing where you're going or what you're doing.

I graduated exactly ten years ago. That doesn't give me a great deal of experience to speak from, but I'm emboldened by the fact that I can't remember a bit of MY commencement, and I trust that in half an hour, you won't remember of yours either.

In the middle of my sophomore year at Kenyon, I decided to paint a copy of Michelangelo's "Creation of Adam" from the Sistine Chapel on the ceiling of my dorm room. By standing on a chair, I could reach the ceiling, and I taped off a section, made a grid, and started to copy the picture from my art history book.

Working with your arm over your head is hard work, so a few of my more ingenious friends rigged up a scaffold for me by stacking two chairs on my bed, and laying the table from the hall lounge across the chairs and over to the top of my closet. By climbing up onto my bed and up the chairs, I could hoist myself onto the table, and lie in relative comfort two feet under my painting. My roommate would then hand up my paints, and I could work for several hours at a stretch.

The picture took me months to do, and in fact, I didn't finish the work until very near the end of the school year. I wasn't much of a painter then, but what the work lacked in color sense and technical flourish, it gained in the incongruity of having a High Renaissance masterpiece in a college dorm that had the unmistakable odor of old beer cans and older laundry.
The painting lent an air of cosmic grandeur to my room, and it seemed to put life into a larger perspective. Those boring, flowery English poets didn't seem quite so important, when right above my head God was transmitting the spark of life to man.
My friends and I liked the finished painting so much in fact, that we decided I should ask permission to do it. As you might expect, the housing director was curious to know why I wanted to paint this elaborate picture on my ceiling a few weeks before school let out. Well, you don't get to be a sophomore at Kenyon without learning how to fabricate ideas you never had, but I guess it was obvious that my idea was being proposed retroactively. It ended up that I was allowed to paint the picture, so long as I painted over it and returned the ceiling to normal at the end of the year. And that's what I did.

Despite the futility of the whole episode, my fondest memories of college are times like these, where things were done out of some inexplicable inner imperative, rather than because the work was demanded. Clearly, I never spent as much time or work on any authorized art project, or any poli sci paper, as I spent on this one act of vandalism.

It's surprising how hard we'll work when the work is done just for ourselves. And with all due respect to John Stuart Mill, maybe utilitarianism is overrated. If I've learned one thing from being a cartoonist, it's how important playing is to creativity and happiness. My job is essentially to come up with 365 ideas a year.
If you ever want to find out just how uninteresting you really are, get a job where the quality and frequency of your thoughts determine your livelihood. I've found that the only way I can keep writing every day, year after year, is to let my mind wander into new territories. To do that, I've had to cultivate a kind of mental playfulness.

We're not really taught how to recreate constructively. We need to do more than find diversions; we need to restore and expand ourselves. Our idea of relaxing is all too often to plop down in front of the television set and let its pandering idiocy liquefy our brains. Shutting off the thought process is not rejuvenating; the mind is like a car battery-it recharges by running.
You may be surprised to find how quickly daily routine and the demands of "just getting by: absorb your waking hours. You may be surprised to find how quickly you start to see your politics and religion become matters of habit rather than thought and inquiry. You may be surprised to find how quickly you start to see your life in terms of other people's expectations rather than issues. You may be surprised to find out how quickly reading a good book sounds like a luxury.

At school, new ideas are thrust at you every day. Out in the world, you'll have to find the inner motivation to search for new ideas on your own. With any luck at all, you'll never need to take an idea and squeeze a punchline out of it, but as bright, creative people, you'll be called upon to generate ideas and solutions all your lives. Letting your mind play is the best way to solve problems.
For me, it's been liberating to put myself in the mind of a fictitious six year-old each day, and rediscover my own curiosity. I've been amazed at how one ideas leads to others if I allow my mind to play and wander. I know a lot about dinosaurs now, and the information has helped me out of quite a few deadlines.
A playful mind is inquisitive, and learning is fun. If you indulge your natural curiosity and retain a sense of fun in new experience, I think you'll find it functions as a sort of shock absorber for the bumpy road ahead.

So, what's it like in the real world? Well, the food is better, but beyond that, I don't recommend it.

I don't look back on my first few years out of school with much affection, and if I could have talked to you six months ago, I'd have encouraged you all to flunk some classes and postpone this moment as long as possible. But now it's too late.
Unfortunately, that was all the advice I really had. When I was sitting where you are, I was one of the lucky few who had a cushy job waiting for me. I'd drawn political cartoons for the Collegian for four years, and the Cincinnati Post had hired me as an editorial cartoonist. All my friends were either dreading the infamous first year of law school, or despondent about their chances of convincing anyone that a history degree had any real application outside of academia.

Boy, was I smug.

As it turned out, my editor instantly regretted his decision to hire me. By the end of the summer, I'd been given notice; by the beginning of winter, I was in an unemployment line; and by the end of my first year away from Kenyon, I was broke and living with my parents again. You can imagine how upset my dad was when he learned that Kenyon doesn't give refunds.
Watching my career explode on the lauchpad caused some soul searching. I eventually admitted that I didn't have what it takes to be a good political cartoonist, that is, an interest in politics, and I returned to my firs love, comic strips.
For years I got nothing but rejection letters, and I was forced to accept a real job.

A REAL job is a job you hate. I designed car ads and grocery ads in the windowless basement of a convenience store, and I hated every single minute of the 4-1/2 million minutes I worked there. My fellow prisoners at work were basically concerned about how to punch the time clock at the perfect second where they would earn another 20 cents without doing any work for it.
It was incredible: after every break, the entire staff would stand around in the garage where the time clock was, and wait for that last click. And after my used car needed the head gasket replaced twice, I waited in the garage too.

It's funny how at Kenyon, you take for granted that the people around you think about more than the last episode of Dynasty. I guess that's what it means to be in an ivory tower.

Anyway, after a few months at this job, I was starved for some life of the mind that, during my lunch break, I used to read those poli sci books that I'd somehow never quite finished when I was here. Some of those books were actually kind of interesting. It was a rude shock to see just how empty and robotic life can be when you don't care about what you're doing, and the only reason you're there is to pay the bills.
Thoreau said,

"the mass of men lead lives of quiet desperation."

That's one of those dumb cocktail quotations that will strike fear in your heart as you get older. Actually, I was leading a life of loud desperation.
When it seemed I would be writing about "Midnite Madness Sale-abrations" for the rest of my life, a friend used to console me that cream always rises to the top. I used to think, so do people who throw themselves into the sea.


I tell you all this because it's worth recognizing that there is no such thing as an overnight success. You will do well to cultivate the resources in yourself that bring you happiness outside of success or failure. The truth is, most of us discover where we are headed when we arrive. At that time, we turn around and say, yes, this is obviously where I was going all along. It's a good idea to try to enjoy the scenery on the detours, because you'll probably take a few.

I still haven't drawn the strip as long as it took me to get the job. To endure five years of rejection to get a job requires either a faith in oneself that borders on delusion, or a love of the work. I loved the work.
Drawing comic strips for five years without pay drove home the point that the fun of cartooning wasn't in the money; it was in the work. This turned out to be an important realization when my break finally came.

Like many people, I found that what I was chasing wasn't what I caught. I've wanted to be a cartoonist since I was old enough to read cartoons, and I never really thought about cartoons as being a business. It never occurred to me that a comic strip I created would be at the mercy of a bloodsucking corporate parasite called a syndicate, and that I'd be faced with countless ethical decisions masquerading as simple business decisions.
To make a business decision, you don't need much philosophy; all you need is greed, and maybe a little knowledge of how the game works.

As my comic strip became popular, the pressure to capitalize on that popularity increased to the point where I was spending almost as much time screaming at executives as drawing. Cartoon merchandising is a $12 billion dollar a year industry and the syndicate understandably wanted a piece of that pie. But the more I though about what they wanted to do with my creation, the more inconsistent it seemed with the reasons I draw cartoons.
Selling out is usually more a matter of buying in. Sell out, and you're really buying into someone else's system of values, rules and rewards.
The so-called "opportunity" I faced would have meant giving up my individual voice for that of a money-grubbing corporation. It would have meant my purpose in writing was to sell things, not say things. My pride in craft would be sacrificed to the efficiency of mass production and the work of assistants. Authorship would become committee decision. Creativity would become work for pay. Art would turn into commerce. In short, money was supposed to supply all the meaning I'd need.
What the syndicate wanted to do, in other words, was turn my comic strip into everything calculated, empty and robotic that I hated about my old job. They would turn my characters into television hucksters and T-shirt sloganeers and deprive me of characters that actually expressed my own thoughts.

On those terms, I found the offer easy to refuse. Unfortunately, the syndicate also found my refusal easy to refuse, and we've been fighting for over three years now. Such is American business, I guess, where the desire for obscene profit mutes any discussion of conscience.


You will find your own ethical dilemmas in all parts of your lives, both personal and professional. We all have different desires and needs, but if we don't discover what we want from ourselves and what we stand for, we will live passively and unfulfilled. Sooner or later, we are all asked to compromise ourselves and the things we care about. We define ourselves by our actions. With each decision, we tell ourselves and the world who we are. Think about what you want out of this life, and recognize that there are many kinds of success.
Many of you will be going on to law school, business school, medical school, or other graduate work, and you can expect the kind of starting salary that, with luck, will allow you to pay off your own tuition debts within your own lifetime.

But having an enviable career is one thing, and being a happy person is another.

Creating a life that reflects your values and satisfies your soul is a rare achievement. In a culture that relentlessly promotes avarice and excess as the good life, a person happy doing his own work is usually considered an eccentric, if not a subversive. Ambition is only understood if it's to rise to the top of some imaginary ladder of success. Someone who takes an undemanding job because it affords him the time to pursue other interests and activities is considered a flake. A person who abandons a career in order to stay home and raise children is considered not to be living up to his potential-as if a job title and salary are the sole measure of human worth.
You'll be told in a hundred ways, some subtle and some not, to keep climbing, and never be satisfied with where you are, who you are, and what you're doing. There are a million ways to sell yourself out, and I guarantee you'll hear about them.

To invent your own life's meaning is not easy, but it's still allowed, and I think you'll be happier for the trouble.
Reading those turgid philosophers here in these remote stone buildings may not get you a job, but if those books have forced you to ask yourself questions about what makes life truthful, purposeful, meaningful, and redeeming, you have the Swiss Army Knife of mental tools, and it's going to come in handy all the time.

I think you'll find that Kenyon touched a deep part of you. These have been formative years. Chances are, at least of your roommates has taught you everything ugly about human nature you ever wanted to know.
With luck, you've also had a class that transmitted a spark of insight or interest you'd never had before. Cultivate that interest, and you may find a deeper meaning in your life that feeds your soul and spirit. Your preparation for the real world is not in the answers you've learned, but in the questions you've learned how to ask yourself.
Graduating from Kenyon, I suspect you'll find yourselves quite well prepared indeed.


I wish you all fulfillment and happiness. Congratulations on your achievement.


Bill Watterson

Tuesday, October 18, 2005 9:15 PM CDT

Sorrow is such is a strange creature. It is not unlike a new baby - Keeps you awake at night, wanting to be fed every hour or so. Such a small thing that makes such a large noise and takes all of your attention and completely changes your life.

However, after some time, you aren't sure if it is you that is getting used to the newness or if the child is changing and slowly growing - night feedings aren't so often and if they are there, you are kind of used to them. During the day, a predictable routine can be established.

My sorrow is kind of like that. There are times that my sorrow still gets upset and has a tantrum - really makes some noise - to let me know that it is there. (Saturday was like that for me). Other times, I know it is there and I do somewhat feed it and nurture it, because it is a link to my other child, the one that is gone. I want those memories, so I will continue to care for my sorrow, but it will, in time, be less of a disruption - Like today. Yes, I know it is there and is always there, but I'm getting a little more functional.

Friday was good - we finally got Girl Scouts off the ground this year with our "kick off" Halloween party - we ate hot dogs and decorated spooky cookies and carved "tombstones" from styrofoam. The girls were glad to get together, I think. And my co-leaders new puppy is awfully adorable!

Mike celebrated his 41st birthday on Oct 13 - exactly one month after Eric's 10th birthday. It was kind of subdued, but pretty good - Katy and I had agonized over what gifts to give (as always) and settled on a new robe (those are hard to find these days), and new wallet and a new iPod nano. Then we had chocolate cake with 41 candles (call the fire department!!!) and Moose Tracks Ice Cream (Katy and Mike's fav). Nummy!

The weekend, other than that, was pretty mellow. Played some World of Warcraft, went to the mall, etc. Like I said, though, Saturday was rough for me. I'm not completely sure why - maybe because it was 5 weeks from when Eric died. Maybe because it was 4 weeks from his funeral. I don't know. I was feeling very bad because I didn't visit his grave last week, but didn't feel up to visiting Eric's grave on Saturday. So, instead I wandered around Eric's bedroom and touched things. I smelled his clothes and stuffed animals. I looked at his books and his shoes and noticed each little scuff mark on the bottoms of his soles - wondered about which step he took that made it. I read a book that Eric had written in 2nd grade - and traced his letters with my finger - making the same motions with my hands that he had made. And I cried. And I asked why.

On Sunday, however, I woke up feeling, well, less bad. Mike and I went to church and saw Fr. Talbot, the priest who said mass for Eric and said his funeral mass. It was comforting just to have him talk to us a little. Then we visited Eric's grave afterwards. By then, I was able to have coherent thoughts and could voice some of my sorrow - to both Mike and Eric. Sometimes it seems kind of silly to talk out loud to Eric, but I do.

Monday was a "get down to business" day, and I paid some bills and then was overwhelmed with everything again, so escaped into a book before I could get very sad. Today, I read again, then visited with friends.

Katy is doing well. She is getting all caught up in school from her long absences. Her soc. studies teacher told her that even though she'd missed so much, she STILL managed to get 100% on her quiz today! Which is great! Oh, and she did very well on the Minn. Standardized Testing - we received an invite in the mail for her to take the ACT and/or SAT THIS YEAR! This gives her an opportunity to see how she'd do right now and opens some doors for summer learning and other special academic programs. So, I need to get the paperwork filled out by Oct 30 for this. She seems kind of stoked for it - but do we enroll her in an SAT prep course? Buy a book of practice tests? Wing it?

This weekend, we are going to "the farm" - we are taking Ernie (our RV) and the boat there for winter storage. It'll be nice to visit with Mike's parents as well. Wish us good travel weather.

Take care,
Kasey

Wednesday, October 12, 2005 9:10 PM CDT

OK, so, as I eluded to earlier, we have done quite a bit lately. Time seems like it has taken on an odd quality. I think back at what we have done and it seems like such a long time ago. But when I think back to when Eric died, it was so short. Last week seems further away than a month ago.

Well, the week before last, Mike and I visited Twin Cities Monument and picked out a grave marker. I was, frankly, dreading this. However, in the end, it turned out OK. The lady working there was "all business", yet pleasant as well. So, Mike and I asked question, looked thru books, fondled pieces of granite and ended up spending about 2 hours there. We even had some humor in the day - as odd as it is to have humor in a building full of tombstones! We ended up choosing a large "traditional" upright grave marker made of Norwegian Blue Pearl Granite (being shipped straight from Norway, no less). It will have our family name "Ruegsegger" (in case you forgot) and Eric's name and birthday/deathday (to coin a phrase from Harry Potter) will be on the right side in a box on the upright portion. The whole thing sits on a pedestal with a beveled/45 degree surface, to allow 2 more names in the future. We left those names blank, tho. (Yes, the implication is Mike and I, but I was being subtle there - keep up, people).

So, the marker should arrive and be installed by the end of November. Which will be nice - so we can find our way in the snow.

What else have we done?

I'm starting to work on the sympathy cards. Did I say that already? Well, it is going to take me a while. I didn't realize how many people we knew and how many people knew us! Be patient - I AM working on Thank Yous... In case you aren't patient 'THANK YOU!!!!' the card/poem/picture/gift is truly appreciated!

Today I went to the eye doctor. Somewhere in all of the crying, I guess I must have rubbed my eyes with a dirty Kleenex or something - I have a viral eye infection - pretty minor - just enought to be annoying.

I started playing World of Warcraft again - not a lot - just enough to say I'm playing again. This weekend, Mike and I logged on as "Galron" for the first time since Eric died. It was kind of weird when I logged onto my character a few weeks ago - in the "ingame mailbox", I had received some mail from Galron. He had played in the week before he died and had mailed me some things (silly game stuff, like herbs, magic gloves, magic ring). It was kind of sad. Well, when Mike and I logged on as Galron, we were able to move him in the game to the town of Darnassus - the home of the Night Elves. Galron is a Night Elf character, so somehow it seemed fitting. We then had him lie down underneath one of the trees, with with White Tiger, Spots, guarding him. Then we logged off. We'll keep his character just like that for as long as we continue to maintain our World of Warcraft accounts. In a way, though, to have Galron right there, it is comforting.

Katy made it to school today. I think she's feeling better - she seemed much happier today. Glad to see her friends. She is looking forward to our Girl Scout kickoff party this weekend too. And looking forward to her Birthday at the end of the month.

Well, time for bed now...

(night night, Eric - I love you)

-kasey

Tuesday, October 11, 2005 12:55 AM CDT

Once again, I find myself reluctant to write in the journal - not sure why - I guess because I KNOW I will cry, so I avoid it. Of course, I cry somewhere between 5-20 times per day, so I'm not sure why I'm so worried about it - I mean, what is one more time??? In fact, if I KNOW it is going to happen, that can be part of my daily quota and I can forgo it one other time during the day, huh? What, it doesn't work that way? Oh well...

Well, today I am keeping busy by FINALLY opening all of the beautiful letters/cards/photos that everyone has given or sent to us. That is something ELSE that I have been avoiding because I KNEW I would cry. So, I'm working on it and I do cry, but it hasn't been as bad as I expected.

After four weeks, the grief is yet a little different. Still there, of course, but yet a little differnt shade. I'm kind of back to the "what should we have done differently" phase - chemos, food, treatment, etc. I know it is pointless, but tell that to my brain at 3 am....

Katy hasn't been feeling well for the last 1 1/2 weeks. She caught a cold/flu/sinus thing and has been feeling pretty awful for what seems like forever. We went to the dr. last week, but she hadn't been sick long enough to earn antibiotics. However, we went back yesterday and this time we did go home with antibiotics. So, she has missed 6 more days of school (we had last Friday off)! This whole quarter has been a wreck for her, school-wise. I think she'll be able to keep up, but am sure it will cause her stress. So, tomorrow, she goes back, no matter how she's feeling. She's still stuffed up and has a cough, but no fever, no throwing up, so off she goes. (I apologize in advance to the parents of any kids who get sick because she is heading back to school...)

Something cool - Eric now has a star named after him. My Uncle John and Aunt Jan have had a star named "Eric Dakota Ruegsegger". Here is the pertinent info:
Certificate

Star Chart

The star, Eric Dakota Ruegsegger, is located in the constellation Cepheus. The location is RA 1h 9m 13s, D 86 degrees 39 seconds.

My grandfather, who passed away in 2001, has a star in the Cepheus constellation also with the star coordinates of RA 1hr 14m 5.56s D 87 degrees 3 seconds, so the two stars are pretty close to each other.

Now I need to get a telescope!

Lots has happened in the last couple of weeks. I really should get on more and update - otherwise it all blurs and doesn't seem like I'm progressing or moving forward.

Take care,
Kasey

Wednesday, September 28, 2005 8:48 AM CDT

I have been avoiding this - a new entry into the journal. I'm not exactly sure why - I guess it is because I have been so caught up in trying to just exist, that I haven't had the energy to do this.

Well, we are slowly getting on and gettng by. Katy, Mike and I had a nice trip up north in Ernie. It was good to get away. I was drowning in sorrow earlier in the week. When I say drowning, that is literally how I felt. They talk about this, but until I experienced it myself, I never knew what it meant - but now I do. It is like riding waves of emotion - up and down - and at times it is almost like choking - like water is in your mouth and nose and you can't get a good breath - or you are afraid to breathe because you might get more water in your mouth. And you know the water tastes bad - like salty tears. So you keep your mouth shut and your eyes shut and just try to ride it out.

So, Thursday, we loaded up the camper and headed out. I was kind of a mess once we hit the road. I just kept thinking about how Eric died. That is the hard part, only being able to remember how he died. Not how he lived. Well, once we got there, the colors of the fall leaves and the stillness and seeing the animals were all very peaceful. A campfire was a good way to relax. We saw the most gorgeous sight that first night - the moon and about a zillion stars over Coon Lake - the water rippling and sparkling like a million diamonds. Even Katy found it amazingly beautiful. At that point, we could almost feel Eric in heaven.

We hiked and ate outside and talked. Mike and I talked a lot - about the good and bad things about Eric and Katy and our marriage. Katy was trying to be uncomfortably cheerful for a lot of the trip, but even she had her moments of letting it down - finally showing anger and sadness. It was a good trip.

We returned home on Saturday morning - it was raining up north and we were ready for showers and clean clothes. A small incident with a fire in Ernie's engine kind of woke us all up and made us realize that we all were glad to be alive! (Without too many details - Ernie wouldn't start so Mike opened the engine cover and added gasoline to the carburator and WHOMPH! fire! - Katy and I freaked! Mike stayed calm and smothered it without any damage to Ernie - and the engine then started without anymore problems!)

Saturday we spent recovering - I went to a movie and Mike and Katy played World of Warcraft. I haven't really been playing WOW yet - my eyesight sucks - too much crying I guess. And I just haven't felt like it yet. It is a fun game, but kind of takes a lot of energy, so I'm not quite up to it.

To be honest, I don't really remember Sunday. Oh - Mike and I went to church. It helped me feel a bit closer to Eric. Katy wasn't ready to face crowds, she said, so she didn't go.

I have trouble remembering things from the last two and a half weeks. I know I talked to people at the visitation and funeral, but don't remember a lot of it. I don't remember saying goodbye to my Dad and Stepmom when they left on that Sunday - I know I did, but don't remember it. Odd, huh? It feels sometimes like I drank too much and now I have a terrible hangover and a sketchy memory.

Anyway, Katy made it to school on Monday and Mike made it to work. I stayed home and it was hard! Everywhere I turned, I saw something that reminded me of Eric, so I'd cry a bit. I think I cried about 100 times. But this time, my crying was different. More of a sense of sadness, but able to remember the good things. Rather than the horriblness of how he died, this week, I'm starting to remember how he and we lived. That's good, but just sad because he'll no longer live with us.

I've been to Eric's grave about every other day. In a way, I feel closer to Eric there, but I make a point of not saying goodbye when I leave, because I want him to know that he can be with me all the time, not just when I'm visiting his grave. Today, I think Mike and I will go pick out monument markers - including a bench or something. Last week, we replaced the old flowers with a living plant (mums) in a pot and we placed some windchimes there as well. I noticed that Lisa K and her girls left a basket with rocks and decorations there as well. It was nice.

A sad thing - I found out this weekend that Vince, a 17-year old boy who we know from Children's, died last week. He had been battling Osteosarcoma for 4 years. He was on the Children's Youth Advisory Council with Katy last year, and Eric and I had talked with him in the clinic and in the hallways at Children's. One time, he and Eric were both in the hospital at the same time. He, Sarah (from Child Life) and I all sat around a PC on the floor and watched music videos and talked about how he'd never taken his Make-A-Wish. He thought that he'd like to be in the movie "Pirates of the Carribean 2", but he was reluctant to finish the paperwork - I guess because it was admitting that he was really sick. Anyway, he is now gone. I hope he and Eric and all the other kids are having fun up in heaven - playing videogames, watching movies, running around, playing sports, goofing off - doing all the things that kids should be able to do, but these cancer kids miss out on because they feel too crappy.

I've started exercising again. Everyday, I'm out either walking or running for about an hour. It feels good to be outside (well - not today - today is raining). Sometimes I walk to Eric's grave. I'm so glad we live that close. It is about a 50 min round trip walk. If I run, it is faster, but I've discovered that running isn't as much fun as it used to be - I'm hauling around 25 extra lbs.

I've been reading - I've got a book for Book Club next week. It is called "Blind Your Ponies" by Stanley Gordon West. It somehow seems appropriate - just the right amount of sadness and loss, but uplifting as well - offering hope of healing. It is about a high school basketball team in Montana who hasn't won a game in 5 years! I highly recommend it.

Oh, I want to say THANK YOU to everyone who has helped out - at the funeral, sending cards, sending e-mails. I haven't brought myself to start looking at all of the sympthy cards yet - but just seeing the stack of them fills my heart with warmth - knowing that you all are out there sending love. Soon, I think, I'll be ready to dive in.

Also, I'm kind of looking forward to doing some work with the Memorial Trust Fund we set up in Eric's name. I've got some plans for the money - Make-A-Wish, Children's Hospital, Adopt-A-Room, etc. I need to finalize the paperwork for the IRS to make this an official non-profit organization, then I can send out receipts to everyone who has participated. A budget is then forthcoming.

Also, I'm thinking of going back to school - to work on biology, genetics and pathology. Cancer research, of course. I though about going back to 3M, but I realized that I've always loved biology and that I just couldn't do that with my old company. I'm going to meet with the docs at Children's who told me they'd put my name out there with their contacts. I'll keep you all posted.

Well, I'm going to finish paying bills. We've got a lot of 'em. Still working on paying off Hawaii. Good think we've got Life Insurance coming to help with the funeral costs.

Well, time to sign off. This wasn't that bad. Writing, I mean. As I said, I was slightly afraid of writing. Not sure what I'd say. or what I'd feel. but it wasn't too bad. I think I'll do it again sometime.

Take care,
kasey

Wednesday, September 21, 2005 6:23 PM CDT

Hi Everyone. Life is still difficult around here - days are agonizingly slow, yet pass very quickly. I can't believe it has been 1 1/2 weeks since Eric left.

However, life hasn't been completely empty. Last night, Mike, Katy and I went to a MN Wild Hockey Game. A neighbor gave us tickets to last night's game, so we decided to go. It was nice to get away, but sad because we remembered the time that Brett Hull gave Eric his hockey stick. We remembered the time Katy and Eric were up on the score board yelling "Let's play Hockey!". We remembered Eric riding the zamboni. We remembered the evening in the luxury box when we met some of the Wild players and they signed our jerseys. And Eric fell asleep in the corner against the giant $10,000 (or so) check that was presented to Children's from the NHL - a luxuious pillow! So, sad, but fun also.

We decided that we still haven't quite healed enough to face the world, so we are going to go camping for a few days - up north. We are going to finally use Ernie (our camper) this year. We didn't get to at all because Eric was so sick. Now, though, he'll be with us in spirit and in our hearts.

Mike went out to lunch yesterday with a friend. He has been thinking and grieving, just like me, so he finally found a way to release some of this. He wrote this letter to his friends and asked me to publish it. So, here are Mike's words:

Thanks for taking the time with me yesterday.

I couldn't really express verbally how devastated we are right now. It will help to write it down I think.

The years of stress and struggle with Eric's cancer seem small now, compared with the torture of Eric's death. The final week(s) of watching him degrade to the point where he could no longer breathe is beyond any pain I have ever experienced. After such a long time, the end moved much faster than anticipated. And it was not the peaceful end I thought we would have.

Eric had poor control of his bladder, bowels and ability to move over the final months. His right leg was mostly numb, cold, and much smaller in size than his left. It pained him greatly to place much weight on it. He could rarely find a comfortable position to lay in. Yet he (and we) kept talking about hope for a cure and a time when all this would pass. We knew it was really only something to give peace to our minds. Eric woke one morning and seemed to be in pain. I asked him if he was doing ok. He
said, "No! It's a nightmare waiting here to die." Nightmare only
scratches the surface of it. Nightmares you wake from, and they fade quickly from memory. This was a never ending Nightmare.... or so it seemed.

The final days the Nightmare got worse. No desire to eat, no desire to go outside, only a desire to sleep. The constant clearing of the throat and his swollen chest told us all was not well. Eric was a ruggedly built boy before the onset of the disease. Fast and strong. No more. In the final days one of us was never away from him. If he awoke somebody was always there. He needed oxygen to breathe that final week and lots of it. The anguish of listening to the gurgling sound of his breathing is way beyond words. To keep him comfortable we needed to keep him sedated. If he awoke or gained consciousness, he gulped for air and panicked (afraid of dying).
So we kept him knocked out. Waiting for him to die, listening to his struggled breathes, wanting to talk to him, but knowing you must keep him sedated to be comfortable. Waiting, and waiting. Then it ended. And a life passed on right in my arms. Never before have I been present at that transition. We all die. I know it now. Everyone you know will die.

Now the next phase starts. The void/guilt phase. How to go on...... The house seems so quiet, there are reminders everywhere. What to do with Eric's shoes, his coats, his clothes, his everything. His stuff is everywhere. He is gone, but his stuff is not. It seems like he could come back any minute... maybe he's just next door or in the bathroom.

We think the what-ifs, why didn't -we's? What if we had found his tumor
sooner? What if we had done treatment differently? We should have done
this... why didn't we do that? We failed. We failed to keep our boy
alive. We failed to find a way. No matter how much you believe you did all that you could, the guilt of failure creeps in and nags away.
Constantly. Incessantly.

And the feelings of lost opportunities. I'm mad at the MN Wild for not playing last year. It was Eric's last year and he never got to go. He never got to use that awesome brain of his. He was so smart and grasped concepts so quickly... it was scary. He would have been great at something. He had such an imagination. I think he would have written books and entertained millions. He had the stubborn resolve that would have made him great at something. But I anguish that it is not to be, never. The what could have been thoughts, fight for time, with the thoughts of what we should have done.

I never expected it would be like this. Somehow, he was supposed to be "cured." Return to a normal life and live long and prosper. This couldn't have happened. I want him back. I want him back badly. So badly.

Monday, September 19, 2005 9:09 PM CDT

Hi- we are doing fine, but rather in a daze. Not sure what to write except life isn't the same without Eric and we are all very very sad.

Tomorrow life goes "back to normal" - no guests, back to school and work. Lots to do for me - cards to open, Thank Yous to write. All I want to do is sleep tho.

Am very sad....

Miss you and Love you, Eric.

Love,
mom

Wednesday, September 14, 2005 9:20 AM CDT

Yesterday was Eric's Birthday. We kept it pretty low-key, but I did cry a lot. We met with Father Talbot and Peter to discuss details for Saturday's service, then about 2pm, we went to the funeral home to see Eric's body and wish him happy birthday. Of course, I cried, but it was good to see him. Later that evening, Mom, Pete, Mike, Jason, Katy and I went out to dinner and then we came home and opened his presents. It was kind of fun and light hearted. Thank you to everyone who sent gifts. The money will go into his fund. Katy, Mike and I will enjoy his gifts, and built the Legos while thinking of him. To honor him.

Someone sent me this in an e-mail. It was beautiful so I'll post it.

Part 1
The Invisible Letter
Sally jumped up as soon as she saw the surgeon come out of the operating room. She said, "How is my little boy? Is he gonig to be all right? When can I see him?" The surgeon said, "I'm sorry. We did all we could, but your boy didn't make it." Sally said, "Why do little children get cancer? Doesn't God care anymore?" "Where were You, God, when my son needed You?"
The surgeon asked, "Would you like some time alone with your son? One of the nurses will be outin a few minutes, before he's transported to the university." Sally asked the nurse to stay with her while she said goodbye to her son. She ran her fingers lovingly through his thick red curly hair. "Would you like a lock of his hair?" the nurse asked. Sally nodded yes. The nurse cut a lock of the boy's hair, put it in a plastic bag and handed it to Sally.
Sally said, "It was Jimmy's idea to donate his body to the University for study. He said it might help somebody else. "I said no at first, but Jimmy said, "Mom, I won't be using it after I die. Maybe it will help some other little boy spend one more day with his mom." She went on, "My Jimmy had a heart of Gold. Always thinking of someone else. Always wanting to help others if he could." Sally walked out of Children's Mercy Hospital for the last time, after spending most of the last six months there. She put the bag with Jimmy's belongings on the seat beside her in the car.
The drive home was difficult. It was even harder to enter the empty house. She carried Jimmy's belongings, and plastic bag with the lock of his hair to her son's room. She started placing the model cars and other personal things, back in his room exactly where he had always kept them. She laid down across his bed and , hugging his pillow, cried herself to sleep.It was around midnight when Sally awoke. Lying beside her on the bed was a folded letter. The letter said

Dear Mom,

I know you're going to miss me; but don't think that I will ever forget you, or stop loving you, just 'cause I'm not around to say I LOVE YOU. I will always love you, Mom.
Someday we will see each other again. Until then, if you want to adopt a little boy so you won't be so lonely, that's okay with me. He can have my room, and old stuff to play with. But, if you decide to get a girl instead, she probably wouldn't like the same things us boys do. You'll have to buy her dolls and stuff girls like, y know.
Don't be sad thinking about me. This really is a neat place. Grandma and Grandpa met me as soon as I got here and showed me around some, but it will take a long time to see everything. The angels are so cool. I love to watch them fly. And, you know what? Jesus doesn't look like any of his pictures. Yet, when I saw Him, I knew it was Him.
Jesus himself took me to see GOD! And guess what, Mom? I got to sit on God's knee and talk to Him, like I was somebody important. That's when I told him that I wanted to write you a letter, to tell you goodbye and everything. But I already knew that wasn't allowed. Well, y'know what Mom? God handed me some paper and His own personal pen to write you this letter. I think Gabriel is the name of the angel who is going to drop this letter off to you. God said for me to give you the answer to one of the questions you asked Him, "Where was He when I needed him?"
God said He was in the same place with me, as when His son Jesus was on the cross. He was right there, as He always is with all His children. Oh, by the way, Mom, no one else can see what I've written except you. To everyone else this is just a blank piece of paper. Isn't that cool. I have to give God His pen back now. He needs it to write some names in the Book of Life. Tonight I get to sit at the table with Jesus for supper. I'm sure the food will be great. Oh, I almost forgot to tell you. I don't hurt anymore. The cancer is all gone. I'm glad because I couldn't stand that pain anymore...and God couldn't stand to see me hurt so much, either. That's when He sent The Angel of Mercy to come get me. The Angel said I was Special Delivery! How about that?
Signed with Love from God

Monday, September 12, 2005 7:59 PM CDT

Hi - updated information

Visitation will be held
Date: Thursday, 15 September 2005
Time: 4-8 pm
Prayer Service to be held at 7:30 pm
Place: Honsa Family Funeral Home
2460 County Road E E
White Bear Lake, MN 55110-4806
Phone: (651) 429-6172

Eric's body will then be creamated and the funeral will follow two days later.

Funeral Services:
Date: Saturday, 17 September 2005
Gathering: 12:00 pm
Service: 1:00 pm
Place: St. Jude of the Lake
700 Mahtomedi Ave
Mahtomedi, MN 55115-1641
Phone: (651) 426-2562

Burial of Eric's ashes will follow immediately after the funeral service at Lakeside Cemetary in Mahtomedi.

Lunch will be served at our house immediately following the burial. Since Eric LOVED fireworks, we will be doing some fountains and a few sparklers in the early evening at the house. Everyone is welcome to attend. Bring a dish if you'd like. We'll also start a campfire and sit around and have a good time - Eric would have liked that.

A memorial fund has been set up:
Eric Ruegsegger Memorial Trust Fund
P.O. Box 378
Willernie, MN 55090-0378


Here is the obituary which will be in tomorrow's papers:

Ruegsegger, Eric Dakota, age 9, of Mahtomedi, MN, passed away on September 10, 2005 at home surrounded by his family after a courageous battle with cancer (Alveolar Rhabdomyosarcoma). Eric was born September 13, 1995 in Columbia, MO. Eric was a 5th grade student at OH Anderson Elementary school and earlier attended Wildwood Elementary School, Mahtomedi, MN. He loved soccer, reading, boating, camping, animals, television, Legos, and attending MN Wild hockey games. He was a Zookeeper for a Day at the San Diego Zoo for his Make-A-Wish trip. Eric was a member of Cub Scout pack 89 and achieved the rank of Webelos II. A highlight of his scouting was participation in the Pinewood Derby with his Dad and receiving numerous race awards. Also known as “Galron”, Eric loved games, especially computer gaming. He was also a great chess player, though was known to cheat at Stratego if given the opportunity. Eric will be remembered by his parents, Katherine (Goffeney) Ruegsegger formerly of St. Joseph, MO, Michael Ruegsegger formerly of South Wayne, WI, and sister, Katelyn Ruegsegger of Mahtomedi, MN. He is also survived by Grandparents Jean and Richard Ruegsegger of Monroe, WI, Grandparents Pat and Pete Wilson of St. Joseph, MO, Grandparents Joe Goffeney and Suzy Bowyer of Las Vegas, NV and numerous aunts, uncles, cousins, relatives and friends.
Visitation will be held on Thursday, September 15, 2005 from 4-8pm with a prayer service at 7:30 pm at Honsa Family Funeral Home, 2460 County Road E East, White Bear Lake, 55110. Funeral services will be held two days later, on Saturday, September 17, 2005 at St. Jude of the Lake Catholic Church, 600 Mahtomedi Ave., Mahtomedi, MN 55115. Gathering will be held from 12:00pm, Service at 1:00pm with burial services to be held immediately following the funeral. In lieu of flowers, donations will be accepted for the Eric Ruegsegger Memorial Fund, P.O. Box 378, Willernie, MN 55090. Foundation funds will be used to provide donations to the Children’s Hospital and Clinics and the Mahtomedi Public School district.. A special thanks to Children’s Hospitals, Clinics and Home/Hospice Care for their loving care.



I got a call from the White Bear Press - they will be writing a story about Eric. That is so sweet!

Today has been a slighly easier day - every day is a little easier. We kept busy also - got flowers, grave site, set up the trust fund, dropped off cleaning, etc.

My mom, stepdad and brother are in town, so it has been easier to live life with the company. They are helping a lot - just to keep us occupied.

I want to thank EVERYONE for all of their generosity! Food, Beverages, Flowers, etc etc etc. I am overwhemed with emotion!

Thanks again,
Kasey

Sunday, September 11, 2005 1:08 PM CDT

Friends,

Mike and I are slowly working through the myriad of tiny details that need to be reviewd following the death of your child. This is the info that is most pertinent to everyone, so here it is:

Visitation will be held
Date: Thursday, 15 September 2005
Time: 4-8 pm
Place: Honsa Family Funeral Home
2460 County Road E E
White Bear Lake, MN 55110-4806
Phone: (651) 429-6172

Eric's body will then be creamated and the funeral will follow two days later.

Funeral Services:
Date: Saturday, 17 September 2005
Gathering: 12:00 pm
Service: 1:00 pm
Place: St. Jude of the Lake
600 Mahtomedi Ave
Mahtomedi, MN 55115-1641
Phone: (651) 426-2562

Burial of Eric's ashes will follow immediately after the funeral service at Lakeside Cemetary in Mahtomedi.

For anyone coming to town, there is a Holiday Inn Express that is pretty close by:

Holiday Inn Express
1100 County Road E E
Vadnais Heights, MN 55110-5122
Phone: (651) 484-2400
They have a pool/hottub and a continental breakfast.
Ask for the "funeral rate" - they quoted us $79.95/night


So, that is what we know right now.

We are all hangning in there. In some ways, although my grief is still fresh and very raw, there is an element of relief and thankfulness that Eric's pain and suffering is over. I do miss him, and will for a long time.

Yesterday was kind of a blur - I was so tired since I stayed up mostly all night the night before. We kept Eric asleep as much as possible during that long night with Versed. He was so stressed because his breathing was so labored - he couldn't get a breath. A few times, however, he overpowered the Versed and awoke long enough to look at us, squeeze my hand, moan a little. We'd tell him that he was so brave and that we loved him and that he needed to follow the light. Then he'd drift off again. Once, about 3am, he woke and I told him I loved him. I think he told me that he loved me too and a tear dripped down from one eye. His breathing became very labored after that - very gurgly-sounding. It was so hard, as a mom. I wanted to keep my voice calm and steady and tell him how great he was, but inside, I was just screaming "help! Help me! Help me save him!" We had him sitting up during the whole night, surrounded by stuffed animals, low light and soft music on in the background. At 5 am, I left the room to lie down with Katy - in my thoughts, I was thinking that he was staying because I was there - and that if I left the room, he'd feel free to move on. Well, right at 6 am, I awoke suddenly. I felt like I had to go back in next to Eric - I looked at the clock - it was 6:03 am. I asked Mike what had changed and he said nothing, but felt that it was different also. Eric's breathing was SO labored at that point. His whole body was moving to help him. breathe. Well, Mike and I talked to him and told him we loved him and told him goodbye. He exhaled and never took another breath. I felt his heart - it was just a flutter that faded and stopped almost immediately. We kept talking to him and telling him we loved him. His body gave one last lurch about 1 minute later and a small amount of foam came out of his mouth. Then we knew he was gone - it was 6:05 am.

First, we unhooked all of the IV/meds tubing and removed his cathdar. I was shaking and then Mike and I sat for few minutes and cried. Cried in a way I have never cried -I'm sorry, I'm sorry - I'm so sorry that you had to suffer so much. I'm so sorry, Eric.

Then we put a shirt on Eric and about 15 minutes later, I woke Katy and she stayed in bed and cried - letting all her grief out - telling no one that her brother had died.

The rest of the morning is pretty much a blur. Jody and Peter from Hospice Care arrived - Peter got here first. He helped us prepare a concrete stepping stone kit - we made an impression of Eric's right hand in the concrete, so that we'll have that of him forever. Peter also led us in a family prayer. We dressed him and slowly picked things up. Jody took care of most of the important stuff - calling the medical examiner's office, calling Children's lab, etc.

Then, around 10:30 am, the funeral home folks arrived to talk Eric away. I cried again. They transported Eric, with Mike and Peter following, to Children's Hospital - St. Paul. He was taken to Children's because one of Eric's strongest wishes was that they remove his tumors so that they can be studied and a cure be found.

Mike met Dr. Messinger at the Children's lab and they talked about the extent of the biopsies and Dr. Messinger also told him how impressed he was with Eric and us as a family over they years. He expressed profound sorry at Eric's passing.

The autopsy (biopsy) was finished yesterday and he was then transported back to the funeral home, where his body rests right now.

Thank you to everyone around the neighborhood - there were candles on many of the decks of the houses around our pond. It was so beautiful! I wished I could have captured it on film, but it was just to big to photograph. I felt so embraced! Thank you.

-Kasey

Saturday, September 10, 2005 6:32 AM CDT

This morning at 6:05 am, Eric Dakota Ruegsegger passed on to the Next Place.

The next place that I go
will be as peaceful and familiar
as a sleepy summer Sunday
and a sweet, untroubled mind.

And yet...
It won't be anything like any place I've ever been
or seen...
or even dreamed of
in the place I leave behind.

I won't know where I'm going,
and I won't know where I've been
as I tumble through the always
and look back towards the when.

I'll glide beyond the rainbows.
I'll drift above the sky.
I'll fly into the wonder,
without ever wondering why.

I won't remember getting there.
Somehow I'll just arrive.
But I'll know that I belong there
and will feel much more alive
than I have ever felt before.

I will be absolutely free
of the things that I held onto
that were holding onto me.

The next place that I go
will be so quiet and so still
that the whispered song of sweet belonging
will rise up to fill

the listening sky with joyful silence,
and with unheard harmonies
of music made by no one playing.
like a hush upon a breeze.

There will be no room for darkness
in that place of living light,
where ever-dawning morning
pushes back the dying night.

The very air will fill with brilliance,
as the brightly shining sun
And the moon and half a million stars
are married into one.

The next place that I go
won't really be a place at all.
there won't be any seasons
winter, summer, spring or fall...

Nor a Monday,
Nor a Friday,
Nor December.
Nor July.
and the seconds will be standing still...
while hours hurry by.

I will not be a boy or girl.
a woman or a man.
I'll simply be just, simply, me.
No worse or better than.

My skin will not be dark or light.
I won't be fat or tall.
The body I once lived in
won't be a part of me.

I will finally be perfect.
I will be without a flaw.
I will never make one more mistake,
or break the smallest law.

And the me that was impatient,
or was angry or unkind,
will simply be a memory.
The me I left behind.

I will travel empty-handed.
There is not a single thing
I have collected in my life
that I would ever want to bring

except....

the love of those who loved me,
and the warmth of those who cared.
the happiness and memories
and magic that we shared.

Though I will know the joy of solitude...
I'll never be alone.
I'll be embraced
by all the family and friends
I've ever known.

Although I might not see their faces,
all our heart will beat as one,
And the circle of our spirits
will shine brighter than the sun.

I will cherish all the friendship
I was fortunate to find,
all the love and all the laughter
in the place I leave behind.

All these good things will go with me.
They will make my spirit flow.
And that light will shine forever
in the next place that I go.

---Warren Hanson

Friday, September 9, 2005 10:27 AM CDT

Update: 6:45 pm
The nurse left at around 5 pm. We are now giving Eric Versed continuously through a PCA pump to keep him calm and sleeping. He has worsened by the hour, more and more oxygen-starved. His breathing indicates that he can't exhale properly, indicating blockage and his CO2 levels are slowly rising in his bloodstream. At one point of lucidity, when he was quite upset and thrashing about, he told us that he was ready to die. We assured him that it was OK with us - that he needs to do whatever to make himself comfortable. He is now sleeping and we'll keep him sleeping so that he doesn't struggle. I've piled his stuffed animals around him and we have soft music that he sleeps to every night playing in the background (Enya). I have read to him and told him more stories. His eyes occasionally flicker open, but not for long. I hope he is comfortable and is at peace.

________________________________

Update: 3pm
Things are still going... Eric seems to be sleeping a little easier. We got a "wedge" to put underneath him, so that he can sleep in a more upright position. He's woken up a few times briefly. He doesn't appear to be in any pain - but he did tell us that he couldn't feel his fingers. We changed his oxygen delivery from the nose cannula back to the mask with the higher flow rate, and that seemed to help. Then he asked if it was his birthday yet, but didn't wait for an answer. He fell asleep again right away. His hands feel nice and warm, but his lips are very pale. His right eye is red because the mask keeps pushing up on his face and rubbing against his eye. Mike and I put some eyedrops in it to help it a bit.

Mike and Katy continue to play WOW - Mike up here in the bedroom and Katy downstairs. She's holding on pretty well, but I think it would be too hard for her to have to be up here the whole time. I'm reading a book - actually a series. It helps keep us busy while we are still here. You can't dwell all the time, you know. Many tears are being shed here, but we still remain hopeful. We could use that miracle right about now, though...
_______________________________________9/9/05 10:27 am

Yesterday and last night have been rough. Eric is definately on the decline right now. His breathing is very labored and he is not awake for very long at one time. When he is awake, he can only manage one or two words at a time - usually telling us that he is uncomfortable - it is hard for him to breathe and that is really bothering him. The Versed we give him helps slow his respiration but also really knocks him out. I think right now, though, that is a blessing. When awake, he needs to sit up to feel like he can breathe, but he's tired, so he wants to lie down, but when he does, he immediately stuggles to sit up again. At least the Versed allows him to lie down and sleep. At times, Eric wakes himself up and is very thirsty, but whenever he takes a sip of water, he chokes and coughs. Eric's lips are pretty chapped, so Mike and I are keeping them moistened with Carmex.

Last night, Mike, Katy and I sat here in the bedroom with him for most of the evening - until 11:30 pm or so, and then Katy went to bed. We really thought that last night he'd stop breathing and move on, but he's a fighter and will fight to the end...

Today, Katy stayed home from school - just so we can all be together. We have been talking to him, telling him stories, or just holding him. He has pillows and stuffed animals all around him, and Mike and I are camped out here in the bedroom with him.

Yesterday, Eric was up for a few hours - he played his computer game for a few hours and then finally got frustrated and quit (it wasn't World of Warcraft, by the way - another one - Red Alert 2: Yuri's Revenge). Around 1pm, he decided to go downstairs and watch TV, but he was very uncomfortable. We were waiting for Peter, the chaplain to arrive, but he was stuggling so much, that I gave him some Morphine and a tiny amount of Versed. I hoped that the Versed would calm him, but instead it made him very sleepy, with slurry words and not all that much more comfortable. After Peter arrived, we told Eric some stories, but mainly just held him. Eventually, we gave him the rest of the Versed dose, which knocked him out.

Later in the evening, he woke up for a bit fairly coherent - Mike and I helped him take a bath because he's been sweating a lot lately. That made him nice and comfortable for a while, but then we put him in bed and had to give him Versed to help him sleep.

Right now, I think Eric is holding on for his birthday, but I'm not sure he's going to make it. Yesterday, we asked him if he'd like to open his gifts, but he was adament - NO - presents are for your birthday! After last night, and seeing him this morning, though, I'm not sure he'll make it, and even if he does, I don't think he'll be awake/aware enough to open his gifts, let alone play with them.

So, we'll see how he does today. We are giving him some IV fluids now - trying to combat that thirst, so that he doesn't have to choke when trying to drink. The last Versed he got was at 5:30 am or so. We hope he'll come around a little later, comfortable, so we are holding off of the Versed for now, but if he wakes and is terribly uncomfortable, then we'll give it to him. Right now, he is sleeping, propped up on many pillows.

Thursday, September 8, 2005 10:55 AM CDT

Hi! We made it through another night! It seemed REALLY long to me - I was "sleeping" with Eric last night. I wouldn't call it sleeping, though, because for being so sick, Eric is quite the little General.... "fix my pillows, need water, need Simba (stuffed animals), no blankets, more blankets, more water, morphine, Versed, light on, light off, etc."

Right now, Eric is sleeping pretty well, though. He was up every hour or so until morning, then slept pretty well from 6 am until now and is still sleeping.

Eric's breathing is still labored and he is a little "bubbly"/"gurgly" sounding when he exhales. But his respiration rate is nice and slow and steady when sleeping. His heart is very strong sounding. His color is good - pink lips and fingernails.

The issues seem to arise when he wakes up - he tends to panic and then he becomes short of breath. He becomes very winded at even the smallest of activities, like rolling over or sitting up. So, I talked with the hospice coordinator and we've got some ideas on how to proceed....

First, we've been not giving Eric IV fluids at night - to draw some of that fluid out of the plural space around the lungs. Well, we are going to compromise - give him IV fluids at a low rate at night, just to help with thirst issues that seem to be waking him up.

Next, we are going to continue to give Eric Versed and/or Morphine for those "panic" breathing attacks. They seem to help him calm down by putting him to sleep.

Finally, also for the panic attacks, we'll hook him up to the oxygen tank at 15 lpm flow rate for short times. Right now, we use the oxygen concentrator - a big unit that makes a lot of heat and noise - and he is usually at 8 lpm oxygen flow. By having the tanks, we might be able to help him calm down enough to go back to normal breathing.

Panic seems to be the key issue right now with Eric - we need to keep him calm and happy.

Last night, Eric had Mrs. Anderson, one of his 5th grade teachers, visit! He was very happy to meet her - the talked at lenght about books, school, kids in the class, etc. She brought over his text books and when he saw the reading book, he actually said, "Yeah! Reading!" in a happy voice!

Later that afternoon/evening, Eric watched some TV and I read some of "Dragon Rider" to him. He is kind of "on hold" with Eragon because he said that he was at a scary spot. So, I'm supposed to read it and tell him what happens and then give it back to him at a less scary place. Kind of "fast forwarding" though the scary spots!

Katy seems to be enjoying school so far. Or, maybe I should say she's tolerating school so far. She'd much rather be home playing World of Warcraft. She's conned Mike into driving her to school everyday so far. Today she was going to take the bus, but missed it. Somehow, I suspect it was planned by her - clever girl! She really hates the bus....

Eric's awake now and is feeling pretty good and he's wanting to play a computer game, so I'm getting kicked off the pc now.

Take care,
kasey

Wednesday, September 7, 2005 12:28 AM CDT

Hi - quick update as I'm not really in the mood for lengthy discussion, yet feel the need to tell everyone what is going on.

Eric did not make it to the 1st day of school - and I'll be surprised if he makes it at all. Since the Monday scare, Eric is now on oxygen 100% of the time and is struggling to breathe. His respiration rate at times is up around 59 breaths/min, but we have meds so we can slow that down - but it seems to make him sleep.

Yesterday, Eric woke up around 2:30 pm after having slept pretty well. His psychologist, Dr. Troy, visited him here at home for TWO hours! He was pretty glad to see her and they talked a lot - especially about books he is reading.

During the conversation, tho, he seemed perpetually out of breath. He had a nose-cannula for oxygen flow, but he would say a few words, then take a breath, then say a few more words - he couldn't really even get out a whole sentence. He didn't seem terribly bothered by it, though. He was remarkably calm and happy.

Eric's pain levels were pretty low, but started creeping up around 5pm, so I gave him some meds that is supposed to help - called Versed. Well, it took about 10 seconds - he was in the middle of a sentence - and he fell asleep! It kind of scared me, really. I replaced the nose cannula with the oxygen mask - but his breathing, while labored, seemed slower and deeper.

We talked with the hospice folks and a nurse came out to visit in the evening - turns out, the Versed is kind of supposed to put you to sleep! We got Eric settled in for a nap on the couch and the nurse told me that his lungs sound pretty good - not clear, by any means, but there were breath sounds on both sides of his lungs, so they are both working right now.

At 9pm, we moved Eric to bed and he woke up for a little bit. We decided to NOT hook him up to IV fluids. If he has added fluid around his lungs, maybe his body will pull from that reserve if needed and maybe reduce some of the pressure on his lungs. We did still hook him up to a cathedar, however.

Last night Eric didn't sleep espcially well - he kept waking up thirsty! He was also hungry at one point, so Mike got him some milk and donuts for a midnight snack. About 5 am, he was struggling to breathe, so we gave him some more Versed and later, a little bit of Morphine to help him relax.

Right now, Eric is still sleeping - he's been sleeping pretty calmly this morning. He still has the oxygen mask on and his breathing sounds pretty wheezy, but his respiration rate is about 24 breaths/min and he does have breath sounds in both lungs when I listen with a stethoscope. He is talking in his sleep, though - sometimes chuckling. Must be funny dreams...

We'll keep ya' posted,
Kasey

Monday, September 5, 2005 7:56 PM CDT

Eric decided to celebrate Labor Day today by making the nice folks at the Sheriff's Department and the Fire Station work a little bit this morning! Long story short, Eric was having difficulties breathing last night and this morning at 6:30 am, he was in some seriously difficulties, so we called the paramedics. We calmed him down and got some good oxygen flow to him, so they left and the hospice nurse arrived.

The paramedics wanted to take him into the hospital, but, after talking with the hospice folks on the phone, we decided that there really isn't anything they could do for us at the hospital - we have already decided that we are NOT going to tap out the fluid in Eric's Plural Effusion (the fluid between his lung and chest wall) - it is a VERY painful procedure, and likely to return within 24 hrs. Also, we have a DNR (Do Not Resicutate) order for Eric right now. If he goes into cardiac arrest, we are going let him go, as long as he is not in pain or panicking. The paramedics were very understanding and very kind. The left us an oxygen tank and a high-flow oxygen regulator and mask, to tie us over until the Pediatric Home Service could arrive with the proper equipment for us. We have had oxygen here at the house for a little while now, but it was set up for low-flow. Now we are set for "high flow" - we can really hit Eric with some O2 to help him breathe.

Eric's hospice nurse arrived at around 8:30 am and checked him over really well and drew blood for labs. Eric's right lung is not working very well now, but his left one still sounds good, so we are pretty sure the panic that Eric was having was because of that reduced right lung usage. He just felt like he wasn't getting enough oxygen. Also, Eric was pretty "twitchy" - all night and it was still going on when the nurse was here. While she was here, we increased Eric's Dilaudid (pain meds).

After the nurse left, Eric started having "mini-seizures" and we were pretty sure we were going to lose him. It was VERY scary - they started out as that "twitchy", but then his eyes were rolling back in his head. Eventually, they were lasting for several seconds and he'd stop breathing! His blood pressure shot up to 145/125 with a pulse of 140 and his heart was beating irregularly! Mike and I were sitting by his side and Katy was nearby - we were in the process of saying goodbye. On kind of a whim, I decided to unhook Eric from his Dilaudid around 11:30 am. Shortly thereafter, the seizures lessened and they stopped within a couple of hours. By 3pm, he was feeling MUCH better - he is not twitchy at all, is very alert and feeling pretty good. He is currently lounging in front of the TV - not feeling great, but still better than he has in quite a while!

So, I suppose I should go back to last week - as you recall, we switched Eric's pain meds early last week and it did not go very smoothly - lots of pain and withdrawl symptoms. Well, as the week proceeded, he was feeling worse and worse. He was "FOS" - and really needed to be cleaned out. The was causing him pain, so we kept increasing his Dilaudid dosing as the week went on.

Finally, on Friday, we broke down (wore Eric down)and Eric agreed to have an enema. That seemed to help on Friday night and kind of helped on Saturday, but he was still feeling quite punky - nauseous - needing more and more oxygen. On Saturday afternoon and again on Sunday afternoon, Eric had a really rough time - he was having a rough time breathing and would lie back on the couch not moving, not talking, but aware of us - he was "twitchy" also - his eyes would roll back and he'd kind of jump. But he'd answer you if you'd talk to him. Kind of scary, but I just figured he was really tired.

Well, last night, it really all "hit the fan" - he was up nearly every hour with breathing difficulties and then we had the paramedics and nurse out in the morning.

Well, I think we have all agreed that we think that Eric was having a reaction to the Dilaudid. We spoke with several nurses, docs and the leader of the "pain team" in the hospice group. So, for now, we've switched Eric back to Fentanyl, and we've reduced his dosing - we don't want him to be in pain, but it seems like so far it is being managed at a low flow rate (450 mcg/hr). He is feeling pretty good - he had an appetite today, for the first time in over a week. He ate some raspberries, cheese, several glasses of milk and a chocolate shake. (He proceeded to throw those up a few hours later, however, when he was having a Bowel Movement - so it is not perfect yet.) At any rate, his energy level is pretty good and his pain level is zero. So, we'll see how it goes tonight.

This weekend wasn't a total disaster - we did have some fun. Mike's Mom, older brother, Dave, and his niece, Brittany, and nephew, Joey, came up from WI for a visit. We didn't really DO anything - mostly computer games, reading, movies - but the main purpose of the visit was to hang out together as a family. Mike and Dave did continue the "Quest to Finish the Garage" - completed the spackling and got it about 75% primed. Joey collected a few more bugs for his collection for science class. Brit and Katy hung out and did "girl things".

Also, on Saturday, we had Father Talbot, from the local catholic church (St. Jude's of the Lake), visit us. He held a mass here at the house and he performed a ceremony: Eric's Confirmation, Anointing of the Sick and Eric's First Communion. We are grateful for Father Talbot taking the time to meet with us and help us out during this time.

Sunday, Eric had some other visitors - three boys who are going to be in his new 5th grade class visited Eric and brought him a poster they had made with pictures of everyone in his new class! They did a great job! Now Eric knows who everyone is in his new class. Eric and his friends played a little "Uno Attack" and Eric had fun, but I think it really tired him out. I'm not sure he's going to be going to school at all - we might try a little later in the day tomorrow, but it really depends upon how tonight goes and how he's feeling tomorrow.

Oh, and there was a bit of added excitement today, though, when Joey grossed out the girls and Katy threw up - from the top bunk - over the edge - onto the carpet and toys and books below. Ewwww. Today was just FULL of excitement.

Well, it is nearly 8:30 pm. I think I'm going to try to get Eric and Katy off to bed early tonight. First day of school tomorrow and all! Plus, I'm tired! We didn't sleep well last night at all.

Take care,
Kasey

Wednesday, August 31, 2005 8:46 PM CDT

Hi all!

Just wanted to let you all know about the scan results. They really aren't too different that we expected. Well, maybe they were... I was expecting there to be a LOT of cancer throughout Eric's body - especially his lungs. Well, the tumors have grown significantly, as expected, but what is probably causing him the most discomfort is 1) his bowels are FULL and 2) the is fluid build-up between his lungs and his chest wall.

1) The bowels - well, I guess I should have expected this - he hasn't pooped really well in quite a while and the fentanyl and and other narcotics cause sluggish bowels. So, our goal in the next few days is to clean him out really well. That should help his comfort level a lot!

2) The fluid around Eric's lungs - this is what is causing him difficulites in breathing - this is causing his lungs, especially his right one, to be compressed. We could have it drained - but the "costs" (i.e. pain, time away from home, time at the hospital) are fairly high, so we are going to talk to some more folks before we decide. If we drain this, he will probably feel better, but the question is for how long? Often times, the build up occurs again within 24 hours. Best case, would be about a week, then it would have to be drained again weekly. The doc said this is do-able in the Hem/Onc clinic. Some downsides: it is very painful, it could lead to low pulse or death due to electrolyte imbalance/fluid loss, it could lead to infection - highly likely, actually, as his system is already compromised and he's being treated right now for an unknown infection. So, we've got some decisions to make. We know that draining the fluid will, at best, delay some discomfort, but will not lengthen his life and might actually shorten it.

I am pretty tired right now. I was rushed earlier, but I didn't really tell you all much about last night. As you know, we switched Eric from Fentanyl to Dilaudid for his pain meds. Well, the pain group felt that this should have been a relatively pain-free (haha) transition. Because they are both morphine deriviatives, there should have been no "withdrawl" issues - well, Eric is a unique case, I guess. The Dilaudid DOES provide pain relief, but Eric seems to be experiencing withdrawl effects from the fentanyl. The best guess is that the dilaudid doesn't affect the same neural pathways as the fentanyl in Eric's brain. Anyway... Today and last night have been rough - hot/cold, chills, sweats, panic and dysphoria (opposite of euphoria), and nausea. Eric was UNHAPPY - so this afternoon, we gave him some ativan, benedryl and morphine to calm him down and we ended up getting some vials of fentanyl so that we can kind of "wean" him off over the next day or so. Should help and I'm looking forward to a good night's sleep tonight.

One thing I want to comment on: I want you all to know that we haven't "given up" on Eric. Yes, we are looking into funeral homes and cemeteries. But, we are doing this as a way to open up the discussions with Eric - Eric wants to be a part of our planning and he wants to have a say in what is going to happen. We are not keeping anything from him, and he now has an open atmosphere in which we can talk about anything. We are being realistic. We still hope for a miracle, but after weighing all of the options, and discussing with multiple doctors, chaplains, nurses, friends, family and Eric himself, we have decided that it is less invasive and more kind for Eric to NOT have to endure more chemo or more treatments. We have expired all of the reasonable chemo options and any experimental chemos would most likely cause unnecessary pain/suffering and possibly shorten his life. So, please do not judge us and do not tell me that we are not doing all we can do.

In addition, I feel it is necessary for me to occasionally leave Eric to do other things for a few hours at a time - and going to Katy's school orientation is important. She needs my support as much as Eric does right now - this is very hard on her as well. By me going with her, she is not "making her brother cry". I am not abandoning Eric, either. Mike, his FATHER, is home with him when I am gone. Eric is, at no time, left alone. Right now, he is showing a very strong attachment to me, but he also needs to know that he can feel comforted and taken care of by his dad. Mike is very capable, loving, intelligent and a fun companion. I do enjoy being with Eric, but being a 24/7 caretaker is very hard and I will take breaks now and then. I have to - it will make me a better caretaker in the end.

Thank you for your concern, and most people are very supportive, but there are some people who read this site that I do not know and you do not know us. I appreciate the "good will", but do not cross the line and presume to know better than we do. I have made a full time job of taking care of Eric and Katy for many years. Under my care, Eric has lived 2 years and 3 months so far with his Alveolar Rhabdomyosarcoma diagnosis, which is a LOT longer than MOST kids who have relapsed have lived. In addition, that time has been filled with some amazing adventures and lots of fun, sharing, laughter and support. We have an amazing support group of parents/friends/family/nurses/doctors/social workers/coordinators/hospice professsional - more people than I thought that I would ever know. We all have Eric's best interests in mind. If you are a "professional cancer-family-supporter" - and you all know who you are - people who search the web for stories of kids who are ill and follow their stories and fill up guest books and e-mail accounts with advice that may not be needed or wanted - I urge to to find a new hobby. I don't like Eric's story to be a part of your daily entertainment. I maintain this website for those who know our family and friends or are a part of our community - either the cancer community or our regional community or family community. Thank you for your understanding. I will continue to write - as I do this for my benefit as well - so that I will have a story to look at later, when I have time and more sleep in front of me, so that I can remember things I have forgotten. I don't want to password protect and limit the access to this page, because more people read this than I am sure that I am aware of, and I want people to understand what it is like to be a parent of a cancer-kid. Most people are amazing, even those who I don't know personally, but if you are out to push your own agenda, then please just leave us alone.

And that is all I have to say about that...

Have a nice day...
Kasey

Wednesday, August 31, 2005 11:19 AM CDT

Gotta keep this short - going to CT scan in about 10 min.

The switchover to Dilaudid wasn't perfectly smooth, but about as good as it probably could get. Eric was craving Fentanyl, even though he was getting the dilaudid. Not sure why, but he was. He had a few side effect - rapid heartbeat, pulse, hot flashes, felt like it was hard to breathe. Luckily, however, he did get a pretty good night sleep last night. No extra meds needed until this morning. He was in a lot of pain when he woke up, but we got it under control in less than an hour and he went back to sleep.

Yesterday we had a very nice visit from Kathy S and Sarah R from the clinic. Eric was up and feeling well thru most of it - putting together Legos while we all looked at photos from Hawaii. Towards the end, Eric was feelng a little punky - tummy issues - but I think he was glad to see them. I'm kicking myself, tho - I forgot to take photos.

Yesterday afternoon was Katy's school orientation for 7th grade - she got her new locker, new class schedule, new outlook on school. She made contact with her friends, and I think she's feeling OK about going back. It was good.

When I got home, however, Eric was pretty panicked - he was upset because I was gone - he was crying and needing oxygen. After I got back, he calmed down and felt much better.

Mike visited a couple of funeral homes yesterday - just getting ideas of costs, what they look like, etc. I think he's getting used to the idea of creamation. Eric and I had another conversation regarding that topic, which Eric started. He told me that he definately wants his tumors to be donated to science so that "someone can cure this stuff!" He doesn't want other kids to have to go thru this. But with the rest, he was kind of ambivalent about burial or cremation - he knows that Mike wants to bury him. But, he started talking to himself and said, "Mom, I don't want the worms to get to me. That's gross!" When I told him that caskets last a very long time, he said, "What about mold? I don't want to mold! Ick! And what if someone wants to dig me up in a hundred years and study me? I don't want my body in a museum! That's for mummies!" So, cremation it is, I think.

Well, gotta dash!

-Kasey

Monday, August 29, 2005 11:32 AM CDT

Howdy,

Well, it was kind of a rough weekend here - Eric was fighting some sort of infection.

On Friday afternoon, I woke Eric up at 3:30 pm and Mrs. Baker and her daughter visited for a few hours. Eric had a good time with Lori - Eric showed her World of Warcraft and then they played a little PS2 - Lego Racers. Lori brought Eric raspberries and a Pumpkin Pie! Yum! I think he had a really good time.

However, soon after Lori and Maddie left, he started complaining that his ear was hurting. Then his throat was hurting. Then he was achy - generally not feeling too hot. Well, around midnight, sure enough, he spiked a fever of about 102 F. I gave him Tylenol and we chose to not go into the Emergency Room, since he just wanted to go back to sleep.

In the morning, I called the hospice care folks and told them about Eric's fever and ear pain, so we decided to treat him for an ear infection. The hospice care nurse came out to the house in the afternoon and brought IV antibiotics with her. We continued with the Tylenol, and that kept his fever pretty much in check. As long as his fever was down, he seemed OK - he didn't really eat much, though, since he was constantly feeling nauseous. He was feeling well enough to play computer games, but that was about it. We also looked at Eric's pain med usage and decided to increase his pain meds up to 1500 mcg/hr of Fentanyl. We would have gone higher, but the pump is only capable of delivering 1500 mcg/hr.

Through the night Saturday, Eric was very feverish. At one point, he spiked the fever up to about 103, but shortly after that, it came down and pretty much has stayed down since then. He kept waking up - nearly every hour - very thirsty and sore. He was also having a lot of sinus pressure and was constantly sniffling. Poor kiddo.

Yesterday, Sunday, Eric woke up around 11 am and was feeling a little better - his ear wasn't as sore, but he still is having "transient pain" - it kind of moves around - first in his ankle, then toe, then head, then shoulder. So, where the pain first started in his leg and was caused by the sciatic nerve being pinched, now it is just pain all over that comes and goes. Who knows why, it just is.

The hospice care nurse came back to the house yesterday and we hooked up a second Fentanyl pump to Eric - this allows us to deliver 1800 mcg/hr of Fentanyl to help with the pain issues he seems to be having. The nurse gave him one more dose of antibioics and we'll continue that once per day for 2 more days. Hopefully that'll take care of whatever nasty little infections are brewing. She also drew blood cultures, so if we find that he does have an infection his his blood or his line, we'll know that in a day or so.

All-in-all, Eric was feeling much better by yesterday afternoon. Eric has started getting "winded" much easier - whenever he climbs the stairs, or sometimes even just walks to the bathroom, he is completely out of breath. He still doesn't want to use the oxygen, however. He has a couple of times, but only for a few minutes. Well, we've got it just in case.

We have made a few more decisions in the last day or so - 1) we are going to get a CT scan done on Eric. We know we can't really do anything based upon the results, but we just want to see what is going on inside - how much growth is in the lungs, etc... 2) we are going to switch pain meds from Fentanyl to Dilaudid (also known as hydromorphone). It is a hydrogenated ketone of morphine - so is also a narcotic, just like fentanyl. I'm not sure how we'll make the switch between the two meds, since I'm sure Eric has some dependancy on the fentanyl - probably wean him off one while increasing the dose of the other. The thought here is that Eric's pain receptors have become "immune" to the fentanyl, so it isn't helping him any more. By switching, it uses different pain pathways, so should help with the pain. Hope it helps....

Some other things that happened this weekend...

Katy realized that there is only 1 more week until school is back - so after a small bout of panic, she decided to label all of her school supplies. I think she's feeling better now that she's prepared, however, she's still not jazzed about back to school time. I bet when she gets around her friends, it'll be fine, tho.

Katy also broke her braces - she's been really good, but for whatever reason, one of the brackets stuck to one of her teeth came off. Since it was still attached to the wire, it was causing some grief and pain - it was pulling her teeth kind of oddly. So, I called the orthodontist and she had me take a pair of wire cutters and take out that wire. Ah, reminds me of my childhood - I was always grabbing pliers and removing my wires - especially when they'd poke too much and wax didn't cover it well. Of course, my teeth are still slightly crooked to this day, so hopefully Katy's wires and brackets stay in place. I'll take her to the orthodontist this afternoon for a fix.

I also went out 'with the girls' last night for dinner - it was a birthday celebration for me and another friend with an Aug. b-day - Erin. We all had a great time and it was nice to get out of the house for a bit. Eric, however, really didn't want me to go - he had a serious case of separation anxiety - it reminded me of daycare dropoffs when he was little. He cried and clung to me and wouldn't let go. I felt kind of bad, but I still needed to get out. I was back home within 3 hours, so it wasn't bad, but he still chastized me when I got back for staying out "so late!" (9:20 pm, by the way)

This week will be kind of busy:
Today: take Katy to the orthodontist, take Katy to get her 12-year shots. (ick)

Tomorrow: Kathy S. and Sarah R. from the Hem/Onc clinic will be visiting us in the morning. Eric has an appointment with Dr. Troy - if he is up to it. Late pm, Katy's 7th grade orientation - get her class schedule, locker, pictures taken, etc.

Wed: pretty open

Thursday: Eric's open house for school

Friday: visitors for the weekend. Mike's mom is going to come back into town with Dave, Mike's older brother, and Brit and Joe, the cousins.

Well, I guess it is about time to get dressed for the day, huh?

-Kasey

Friday, August 26, 2005 5:39 AM CDT

I'm very sorry to say that Jason Archer passed away yesterday afternoon. Please pray for Pam and the rest of the Archer Family to find peace and acceptance.

Yesterday, Eric worried me in the morning and early afternoon - just a bit. One of the hospice nurses came over in the morning for Eric's bi-weekly blood draw. (It isn't painful because they just get it out of Eric's hickman cathedar - you know, I just LOVE that thing! Because of it, he gets IV fluids, IV pain meds, blood draws - all without pokes) Well, she got here around 10 am and Eric was upstairs sleeping, as he usually is at 10 am. However, he was having a bad dream at the time - yelling out incoherently, batting at the air. The odd thing was, however, that he was kind of responding to me. I would say something and he'd moan back. This bad dream went on for a LONG time - about 20 minutes. In the end, he was kind of saying "ow, ow, ow", so we gave him a bump of his pain meds. I also had him change positions after he was saying "arm, arm, arm" - I think his arm fell asleep.

When Eric was very small, he used to get night terrors. He'd "wake up", but not be awake at all. He'd be sitting up yelling at some imaginary something, either being scared or PISSED! Most of the time, we figured out, that he'd have been lying on his arm and it had fallen asleep - that was the trigger for these night terrors. I would rub his back or rock him back to sleep after getting his arm back to normal.

Well, yesterday, I think the same thing was happening - after he changed positions, I rubbed his "sleepy arm" and he settled down and went back to sleep.

Later yesterday, Neina stopped by. Neina was Eric's CSA at Children's Hosptial, St. Paul, for the first year of his treatment. Neina and I still stay in touch, even though she no longer works at Children's. This year, she is going back to school at Century Collge - which I think is great!

Anyway, Eric was still sleeping when Neina stopped by and wouldn't wake up for her. We were even horsing around a bit in the bedroom, but no dice. He was aware that she was there, and kind of responded, but never really was coherent.

After Neina left (around 12:30 am), Katy and I puttered around and then I took an afternoon nap, which I seriously needed. Well, around 4 pm, when I woke up, Eric woke up as well - just as normal as can be! I told him good morning, to which he replied, "Don't you mean Good Afternoon, Mom?" with a grin on his face. He can be such a smart ass.... LOL!

Anyway, that was a big relief on my part.

Katy continued to play World of Warcraft yesterday. It is a nice activity for her - she's totally on a mission to get her character up to level 60. She made it to 45 the day before yesterday. She actually admitted to me, however, than she uses World of Warcraft as a way to avoid thinking about Eric's illness and the sucky things. That is one of the first times she's admitted that Eric being sick does affect her and upsets her. Well, and, it is fun, she says.

Mike also continues his World of Warcrafting in the evening. Eric told him that he's addicted and needs a break, but Mike just laughed and told him, "it is fun! I like to do things that are fun!" And since Eric just wanted to watch TV and play on the PC, he couldn't really say much, as it was pretty much the pot calling the kettle black.

Once again, Eric had a pretty good evening. He continued to play his new PC game. He ate pretty well (raspberries, applesause, 3 chicken strips, 4 pieces of cheese, 1/2 glass milk, brownies - unknown quantity [Thanks, Lisa, for the brownies!]).

He also pooped several times yesterday - once again, pooping is VERY important as the bowels tend to really slow down with the pain meds. Unfortuantely, it was kind of painful for him. He was having lots of pain in his gut, he said - some cramping.

After a while, he got tired of the game and watched TV for a little bit and then went to bed at 10 pm, which is actually an hour later than usual! He was feeling good enough that he wanted to stay up later!

Well, he's been up today since 4:30 am or so. He told me he always wakes up in the middle of the night, but just is quiet, so we don't know. Since he has IV fluids and the cathedar, he can't get up, but he told me he doesn't want to - that he's ok with just trying to go back to sleep and lying there, hugging his stuffed animals. That is why he sleeps so much during the day, he says. So, right now, he's up, but trying to sleep again.

I guess I'll go back to bed now as well. I hear thunder outside in the distance. Maybe we'll get a nice little thunderstorm. Those are nice to sleep to.

Take care,
Kasey

Thursday, August 25, 2005 5:51 AM CDT

*** Jason Archer isn't doing well. LOTS of prayers needed! Jason****

Well, the last few days have really been an emotional rollercoaster for me. Some it is just that I have been going through a paradigm shift - a shifting in my view of Eric's time here on Earth, and some of it is because there have been some physical changes in Eric that may indicate that he's getting closer to the end.

I last updated on Tuesday morning. On Tuesday, Eric slept until 4 pm or so. I talked quite a bit with Peter, the chaplain. We talked about all sorts of things (Eric's early childhood, my parents, Mike's parents, etc etc - Peter, you really are a good listener). For whatever reason, I felt this need to tell him about Eric's background in details - where we all came from and how we got to where we are.

We also talked about some of the "hard stuff" - things that make me cry - funerals, funeral homes, cemetaries, burial options. I wanted to do this because I don't want to be totally in the dark - I've only been to 3 funerals in my life and can't say I really paid attention to the details.

Well, also, Peter gave me some literature on "what to expect when you child is close to death" - some signals, physical and emotional, in your child. Of course, that made me really take a look at Eric and how he's doing. I know that he's heading down that path, but I guess I've always somewhere deep inside still denied that it could really happen, that he could really die. I always think that there'll be a last minute reprieve or that someone made a mistake and they really DO have a cure. Anyway, that also made me sad.

So, after Peter left on Tuesday, I lay down to take a nap and Eric woke around 4pm. When he woke, he was having pain again - this time in his chest. He had sharp pains in his lower lungs, so we ended up giving him morphine in addition to his fentanyl to help with that. It kind of helped, but a few hours later, around 8 pm, he had shart pains again - very painful, very scary for him - and in addition, he was having shortness of breath. We called Jody, on the pain team at the hospital, and she told us that morphine, again, was the best thing to do - the morphine, in addition to reducing pain, reduced the "oxygen deprived" feeling that one gets when having trouble breathing.

Well, Eric went to bed as normal that night, but he was looking pretty rough - very "drugged out", very emotional, pale. All of that was prety scary to me, especially since I had JUST had that long conversation with Peter about dying. In a way, I felt guilty - like I caused Eric's pains and breathing problems - because I had that conversation - like it was the conversation that caused it! Silly things we think, huh?

On Wed morning, around 4 am, Eric had more pain and more shortness of breath, so we gave him more morphine and both Mike and I slept with Eric after that (made for a crowded bed, especially since Eric has EVERY stuffed animal he's owned in bed with him - as kind of a nest).

Yesterday morning, I talked with Tracey, our hospice care coordinator, and we increased his fentanyl dose again - it is now at 1200 mcg/hr with a bolus dose of 400 mcg. Tracey also ordered oxygen and it arrived yesterday afternoon, so now we have oxygen cannisters and a BIG old THING in the bedroom - an oxygen concentrator - it makes a soft hum and concentrates the oxygen in the air so that Eric can get a nice stream of oxygen if he's feeling short of breath again.

Of course, Eric being who he is, when he woke up at noon, he felt GREAT! I'm sure the increased fentanyl dose has somthing to do with that, but he didn't have any pain, his color looked really good. He was really energetic - enough that he decided that he wanted to go to Best Buy (out of the house!!!) and purchase a new computer game (an expansion pack to his 2nd fav. game - Command and Conquer, Red Alert 2. In addition, Eric's appetite was up. I mean, he didn't eat much, but more than he had the day before. Food count for yesterday: 2 cookies, glass of milk, 6 crackers with cheese, applesause and raspberries. And water.

Eric continued to feel good the entire day. He didn't have pain and he didn't use the oxygen at all. He took a relaxing shower and then went to bed, and as far as I know, has slept well all night.

So, we'll see what today's rollercoaster brings. up down up down.

Oh, as I said, I also talked with the school this week and Eric has been assigned to a class and his homeroom teachers are Anderson/Donovan. Well, we got the "letter from the school" (with a nice note from Jane, the school admin. asst) welcoming Eric to class and with the class list. I had purchased quite a few of the supplies a day or so earlier, but Eric is now interested in getting the rest of them sometime this week. I don't know how much he'll use ANY of them, but we'll go and I'll buy out the store if he wants!

I think my entries are going to have to be more frequent than weekly - changes are happening and when they do, it'll be really fast. I'll try to get online daily or every other day if possible.

Take care,
Kasey

Tuesday, August 23, 2005 2:33 AM CDT

Good Morning!

I don't seem to be back into the swing of things quite yet, so my update is late again. I do like to have it done by Monday mornings. But, my life is not run by "weekdays" and "weekends" anymore - it is summer and I'm not working and we aren't going to appointments anymore, so the days seem to be kind of running together now - time just slowly trickling away like a small stream running through the woods - at times overflowing the banks, at times nearly dried up and hardly moving, yet always slowly flowing downhill towards the unknown. And right now, at the end of summer, the stream is kind of moving sluggishly and sleepily through little pools. It is a comfortable little place, but you can already feel the coolness of the air and know that fall is approaching with the rains and soon the little stream of time will be full and moving very swiftly, bouncing over the rocks and moss.

Anyway - things are fine here. Eric contines his very slow decline. We have increased his pain meds (Fentanyl) to 950 mcg/hr. We increase the hourly dosing based upon the number of times he gives himself a "bump" or a bolus of meds - the pump he has lets him push a button and give himself an additional dose of medication - to help him during painful times. Well, lately he's been pushing the button quite a lot - at least once per hour or more. So, a hospice nurse comes to our house at least once every 2-3 days and recalculates how much medication Eric should be getting. That is why his meds are increasing.

Well, his meds are increasing because he's still in pain. The pain moves around - but lately it has been in his leg - right leg, in the leg joint - and his butt. He said it hurts to sit and it hurts to stand. He moves around quite a lot - changing positions. Yesterday, he was up and playing on the computer - sitting at a table. When I looked at him, his right foot had turned kind of purple - like when you have a rubber band around a finger and the end of your finger turns purple. The tumor is getting to the point where it cuts off circulation to his leg if he stays too long in certain positions. He can't really feel it, he tells me that his foot is pretty much numb. But it looks awful all the same.

In addition, Eric's right leg is very skinny. Well, all of him is skinny right now, but his right leg has atrophied. He is still walking around the house, though. He has a pronounced limp, but refuses to walk with either a walker or cane - we have both, just in case. It would be nice to get him to walk a little more - a little bit of exercise - but we take what we can get.

The increased dosage of Fentanyl has decreased Eric's appetite and increased his sleeping. Every other day, Eric sleeps late - to somewhere between 2 and 4 pm. He still goes to bed around 9-10 pm. Bedtime is quite a production and takes over an hour, though, so sometimes he isn't asleep until after 11 pm.

What is our bedtime routine, you ask? How can it possibly take so long? I ask myself that all the time -it doesn't seem possible, but it does. When Eric announces that he's tired and it is bedtime (and it is him that tells us that - he's VERY consistant about bedtime - if it was up to Mike and I, we'd be up all night, I think), then we start the routine. We head up and I gather the supplies - IV fluids, IV tubing, IV Fentanyl bag and tubing, Benedryl vial, syringe and sharp, 3 saline flushes, alcohol pads, cathedar, cathedar bag, gloves, lubricating jelly and iodine pads. We've starting keeping many of these supplies in my night stand table, so it isn't too bad to carry everything - just need to make sure the supplies are stocked.

Then, as Eric gets himself undressed and ready for bed, Mike or I set up the IV fluids, start the IV pump and prime the tubing. Then I (or Mike - I'll continue from my point of view, but Mike does his share of night routine as well) draw up the benedryl into the syringe. At this point, Eric's in bed, so I turn off the lights and turn on the small portable lamp I use for light and turn on the music (the nighttime music for Eric must be smooth/soft - currently Enya is the fav). Then I take one of the hickman cathedar ends (the tube in his chest) and clean it with alcohol, flush with saline, clean with alcohol, hook up the IV benedryl and administer it slowly - slow pushes over 3 minutes or so. Next, I clean the end with alcohol and give another saline flush - this second flush is very important. This is the "no talking" time for Eric - he's very strict about this. This flush has to be given very slowly, or all of the benedryl sitting in his hickman tubing will be flushed into his body too quickly. During this final flush, Eric gets very sleepy and relaxed and if we are talking, we mess up his sleepy feeling. I think he gets a little buzz during this time, to be honest. Well, if it helps him sleep.... After the benedryl is all in, we hook up the IV fluids and start the pump. Now it is time to check Eric's Fentanyl supply - if it is low, we hook up new tubing to a new fentanyl bag, prime the tubing and hook it up to Eric as well. Sometimes, there is quite a lot of fentanyl left, so Mike will wake up in the middle of the night to replace the bag and tubing.

So, after the IV fluids and fentanyl are done, it is time to wait a bit. Eric likes to be sleepy, but not completely asleep, when he is cathedarized, so we are under orders from Eric to wait 10-30 minutes. I usually lie down next to him and try not to fall asleep - the sleepy music makes it tough, though. Well, after a bit, it is time to prep the cathedar.

I turn back on the small lamp - it is important that there is enough light to see, but not enough to bother Eric. I open the sterile gloves, and don them. I open the new sterile urine collection bag (new and sterile are important - he had a bad urinary tract infecction once early in the summer and we don't want a repeat, so I'm VERY careful now) and hang it on the side of the bed. I open two iodine prep pads, the KY jelly pack and the cathedar - the KY jelly is used to lubricate the tip of the cathedar. Eric lies back in bed and we cover him up up top - then use the two iodine pads to sterile the tip of his penis and quickly insert the cathedar. It is a foley, so we then use a saline flush to "blow up" a small "balloon" that is in the tip of the cathedar - the part that is now in his bladder. This keeps the cathedar in place during the night. The cathedar is hooked to the urine collection bag and I sit next to Eric as he falls asleep to make sure the urine is getting into the bag and tha that air isn't backing up into his bladder. Eric is very concerned about "air" - he HATES the idea of air getting into his bladder, so it is important to make sure all of the air is out of the system. Every night I do this, I am reminded of my old job as a chemical engineer - when I worked on a project in a 3M plant in Cordova. It is a distillation system, with lots of chemical piping. Well, in that system, before we could start it, we flushed the lines with water and then chemicals to make sure all of the water and air were out of the lines - we couldn't leave any air bubbles in the lines! So, moving around the tubing to get the air out of Eric's cathedar line is very similar. Can't leave any air traps!

So, finally, I get to go to bed. Of course, Eric wants someone to lie down with him until he goes to sleep. I usually do that, until Mike comes to bed after 11 or so. Eric's sleeping in my side of the master bedroom bed these days. He finds the bed to be more comfortable that his own in his room - and I think comforting. Usually, during the week, Mike sleeps with Eric and during the weekend, I do. The other one of us sleeps in the guest bedroom. That way, one of us gets a full night's sleep - in theory. Of course, I often wake up and toss and turn.

You can always tell when Eric is awake. He constantly clears his throat these days. I'm not sure if it is something from his lungs or not, though. I know the tumors in his lungs are growing, but his lungs continue to sound clear, and at night, he breathes just fine - no coughing or throat clearing. But, during the day, he is constantly clearing his throat. Frankly, it drives Katy bonkers! I use the noise to know when Eric is awake at night. At least I know he's still breathing!

So, most nights, Eric wakes up for an hour or so. He is quiet about it. He gives himself a few "bumps" of his fentanyl, so you know he is aching. He sniffles and coughs a bit, and tosses and turns, but he tries not to wake mom or dad up. I do anyway, though. One of those "mom" things. Kind of like when your baby is an infant - and you know exactly when they wake up for midnight feedings.

The small lump on the left side of his groin - the one that showed up during radiation in June - is continuing to grow. It is really the only outward sign of his cancer - other than the thin leg and and pain. It is really a bunch of small lumps now - the first one is about the size of a chickpea now, and it is connected to several other lumps of varying smaller sizes, with the total length of the group of lumps being about 1 to 1-1/2 inches. I can still see the circle drawn on Eric's skin around the first lump - the radiation oncologist drew it there back in June and the black line is faint, but still there. So, I can kind of keep track of the growth of this mass. It isn't really noticeable except when I'm doing Eric's cathedar. He doesn't really even notice it - but he does comment on the fact that is is getting bigger every once in a while.

Eric has talked a little about death, but not a lot. He said that he is getting tired - tired of the pain, really. At times, we all go on as we always have - talking about "afterwards" - what we'll do when the cancer is gone, but really, no one has said that anymore lately. Now, it is "afterwards", after Eric has died. Eric has made a few attempt at telling me what he'd like his will to say, but not much. Mostly, we go on and just figure out what we are doing that day, that moment. Play some World of Warcraft - Eric wants to get his character up to level 40, when he can learn to ride a horse - or watch TV (can't get enough of Spongebob, you know) - or play some GameBoy game (he's trying to finish one of the games he's been playing for a few years - "Golden Sun - The Lost Age") - or read (he's SOOOO close to finishing the latest Harry Potter book, but hasn't quite gotten round to reading the last chapter or so).

Meals round here are pretty unorganized. I fix him whatever he'll eat, which isn't much - the Fentanyl just takes away his appetite, and we tried giving him Marinol to increase it, but he doesn't like the feeling that goes with it, so he skips it most days. He'll usually eat at least a bowl of cereal for breakfast and some raspberries or strawberries during the day. Maybe a cookie or two or cake, if we have it. If I'm lucky, he'll eat a bite or two of cheese, or a cracker or a hot dog or some corn on the cob if he's REALLY hungry. He used to really like chicken, but lately, even that isn't doing it for him. he's lost weight - back down to 58.5 lbs. Back before his first surgery, in May 2003, Eric weighed 67 lbs. The week after his surgery, he weighed 59 lbs. Ever since then, his weight fluxuated between 59 and 67 lbs. The most he weighed was 73 lbs this past spring. But now, he's back down again. He looks so skinny.

Eric does have hair, though. Quite a lot of it - everywhere. Leg hair, back hair, eyelashes, eyebrows, hair on his head - he still looks like he's had a buzz cut, but it looks good. Very dark. Eric hates the hair on the rest of his body - especially the peach fuzz on his chest. The dressing over his hickman still has to be changed a couple of times a week and the adhesive pulls out that fine hair when it is coming off - OUCH!

Ok - I'm tired again. I've been at this long enough. Bored yet - I would be. This is kind of dull stuff, but I thought I'd get it captured - our evening routine - because those are the things that tend to fade with time from memory.

Oh - yeah, I forgot - we were supposed to go up to my friend, Angie's, cabin this weekend, but we didn't. I wanted to go, and everyone did as well, but we were waiting for a delivery from the home care pharmacy before we left, and by the time it got here, the enthusiasm was kind of gone, so we just stayed here last weekend. It was a "family weekend" for a bunch of people, so Eric and Katy would have had the chance to socialize with some friends from school, and Mike and I with some adult, non-medical people. I guess we have kind of started to withdraw quite a bit - or maybe it is just because we haven't had a quiet weekend at home for so long. But, in the end, we just stayed home and on Saturday afternoon, we made the annual pilgimage to the Minneapolis Renaissance Festival.

This is our third year for going to the Ren Fest. We didn't stay long this year - it was kind of hot, and Eric was in the wheelchair the whole time. Since the festival grounds aren't paved, it was pretty bumpy for him and sitting for so long was painful for him. But, we did see a show or two, watched the glass blower, ate a turkey leg and dressed up in costume. It was nice to get away for a few hours - though we probably spent almost as much time driving there and back as we did at the Festival. Maybe later in September, we'll go again.

Ok, I am definately going back to bed now!


night,
Kasey


Oh - Birthday - Some people have asked me what Eric would like for his 10th Birthday - well, Legos. Eric has asked for more Lego Sets. Our neighbors, the Hamiltons, gave him a couple of Star Wars sets last week, so now he is totally psyched about Legos again. I think comic books would also be appreciated as well!


**** Update 8:39 am******
You know, I when I first was going to do the above update, I was pretty sure that I didn't have much to say. It is funny how all of this stuff sort of pours out of the little nooks and crannies of my mind and fills up quite a lot of space. The second advantage to writing this all down, is that I don't realize it, but I start worrying/angst-ing/stressing and I feel awkward, sad and heavy. But, after I write and then sleep, I feel so much better the next morning. Although I am tired today, I feel lighter (well, not literally - because, frankly, Hawaii and visitors are NOT conducive to weight-loss or even maintaining!)

Anyway, I did call the school today, and guess what - they are one step ahead of me and Eric has been assigned a classroom and teacher(s). He has Christy Anderson/Julie Donovan - two ladies who job share - one is there in the morning and one in the afternoon. I don't know how much Eric will actually be at school, but he'll be glad to know that he has a class.

I also talked a bit with Terry, the school psychologist, and Jane, one of the office folks - they agreed that this is good for Eric, and for the entire staff - they can't wait for him to stop by and say Hi! Open house will be on Sept 1 and school starts on Tuesday, Sept 6.

Oh, speaking of school, a friend sent a link - Katy's picture is on the middle school web page! ==> Mahtomedi Middle School
Look at her - doesn't she look like she is working industriously? I'm so proud of her - she did a great job at middle school last year! I think she is (sort of) looking forward to school this year. Of course, it will cut into her "World of Warcraft" play time!

Katy is doing pretty well - sometimes I feel bad, because I don't always include her in these updates. Well, I could just say "Katy played a lot of World of Warcraft this week" and copy and paste that in the weekly note and it would pretty much be true! The game is set up so that you keep finishing quests and gaining experience points that help your character go up levels. Her goal is to get to level 60 before school starts. She's somewhere in the mid 40's now and gains about a level every other day or so, so it might be possible. I know, I should be making her read books and prep for school, but, frankly, she enjoys it - and we are all about that right now.

Well, the house is quiet again - Mike is at work, Katy is babysitting and Eric is sleeping (as are all of the pets - cats, dog, mice). I think I'll work on photos now....

-Kasey

Friday, August 19, 2005 9:38 AM CDT

Good Morning! I'm sorry it has been so long since my last update - I missed last Monday's. Well, we were pretty busy with the Hawaii trip, and then my parents visit and then Mike's family's visit, so after everyone left on Monday, I discovered that I was TIRED. So, Tuesday, I pretty much slept - I wasn't feeling all that great either (sore throat, headache). Wednesday, I spent getting caught up on paperwork (bills, etc.). Yesterday - well, I'm not exactly sure where yesterday went. So, here it is Friday. I guess better late than never, huh?

So, the last two weeks here at home have been quiet, yet busy all at once. I still don't feel like I have everything under control again. I'm almost caught up on laundy, tho.

Eric is feeling pretty well these days - although his pain levels have been slowly on the rise. We combat this with increases in his Fentanyl dosing through his PCA pump. So, while we were on the trip, Eric was getting 300 mcg/hr. Now Eric is up to 850 mcg/hr. The pain seems to be in different places every day. Shortly after we returned, it was his right kidney - the urine output was low and his urine was very dark and his right side was very painful. However, by last Wed, whatever was blocking the kidney seemed to have flushed itself out and his urine output has been good and the urine color has been good every since. And very little pain on his right side.

Then the pain moved to Eric's groin area - well, right side - kind of in the ball/socket of his leg joint. Now that is feeling better, but he is complaining of pain in his backside again - around his tailbone. He also has been having occasional sharp pains in his chest - his lungs.

Well, we know that the cancer is growing unchecked - but we don't know how fast, where, etc. We haven't had scans since July 15. I suppose I could ask to have one, but it is kind of pointless - and would just be a lot of work - dragging Eric into the hospital. He doesn't want to go, so I won't make him.

Eric's attitude, however, has been pretty good lately. He really enjoyed last weekend's visit by Mike's Mom, Dad and two of the cousins, Britt and Joe. The kids played lots of computer games. We also took the boat out on White Bear Lake - even Eric! We had a couple of campfires in the backyard and lit some fireworks (sorry to the folks when Mike was making noise on Sunday night! oops).

Yesterday, Eric lost a tooth! It was his first molar that he lost. I'm sitting here looking at it because Eric forgot to put it under his pillow for the tooth fairy last night.

Lets see - what else has happened since my last update? Oh, I celebrated my birthday when my parents were here. I turned, um, another year older.... It was nice - my mom got me some nice gifts (cookbook, art supplies, wine glasses) and Mike got me a pair of pearl earrings to match my Black Pearl necklace that I wear everywhere. He had picked them up in China the last time he was there and saved them. Isn't that sweet! I do like pearls....

We have also had Peter Lund, the hospice chaplain, visit us - Eric really likes having Peter visit - they just hang out. And I get to chat with Peter as well - we talk about life/death/planning/religions/etc. Peter is a really nice guy and he has added so much to our lives though his visits! This week, Eric and Peter put together a puzzle - it is something so simple, yet means so much.

And Sheila, Eric's old teacher, visited last week. Eric took her upstairs and challenged her to a Playstation 2 game - Lego Racers! It was amusing, since Shiela is NOT really a video gamer. Eric had a good time!

Today, Eric and I are going into the clinic to visit Dr. Troy, his psychologist. I think he's pretty psyched to go - he likes Dr. Troy and I'm sure he has a lot on his mind right now.

Eric seems to be sort of at peace these days. He is enjoying his time - but he did tell us that he is tired of pain. He has even started asking about school. Now, last year, Eric RARELY made it to school - the chemo wiped him out and he just wasn't all that interested in going. He even didn't really feel much like participating in the tutoring sessions last year, so we didn't push him. Last spring, when the report cards came out, all of the kids were assigned teachers for the fall - except Eric. I think we weren't sure if he'd be interested in school or that he might not even be around. Well, it looks like Eric is hanging in there and, aside from the pain and his limping, he is feeling pretty well. He asked about school and I have asked him if he thinks he wants to go - he said yes - that he isn't on chemo, so there is no reason not to go to school. So, I guess I'll contact the school next week and we'll work something out - a reduced schedule or something. I don't know...

Well, once again, sorry for the lack of communication. Nothing is really wrong (aside from the "normal" wrongness). Thank you to everyone who is checking up on us, though.

Talk to ya later!
kasey

Saturday, August 6, 2005 4:37 AM CDT

Aloha!

I wanted to send a HUGE Mahalo (THANK YOU!!!) to so many amazing, wonderful, generous people out there! We are so sincerely touched by your giving! We came home to a house that had been cleaned top to bottom, fresh groceries, our laundry finished, the flowers watered, the lawn mowed and our deck stained! We have also received LOTS of money from so many people to help us with the expenses of this trip. I am so grateful (I am tearing up here just thinking about it). There is no way for us to repay you all - but you have our thanks. I didn't know there were so many people our there that I KNEW, let alone that cared so much. I am truly counting you all as blessings.

We made it back just fine - the trip was LONG, but we survived. My hours are still a bit screwy, tho. Yesterday I slept until 1 pm, went to bed at 10 pm, woke at 2:30 am and am still up at 4:30 am. I think I'll go back to bed soon, tho.

Eric's hours, however, are pretty much back on. He's been consistant about going to bed at 10 pm and sleeping until 11 am or noon. And he took at nap yesterday afternoon. He likes to tell me that it is because he's maturing - "because teenagers sleep a LOT, you know, Mom."

Katy and Mike, however, also have odd sleeping patterns, like me. They were up until 2:30 am this morning - I told them goodnight as they trundled off to bed when I woke up. Good thing there is no school for Katy!

We finished off the trip to Hawaii in style. On Monday, we took another helicopter ride - this time around the Big Island so that we could see the volcano. The eruptions weren't really that impressive at this time, tho. We flew up to the Pu'u O'o vent on the side of Kilauea where there is a lava tube in which lava is travelling down the mountain to the ocean. The tube was cracked open a bit, so you could see some glow - and LOTS of steam. Then we flew down to the ocean where we could see red flow into the ocean. Pretty cool!. Here is a cool website where you can see a live webcam of the lava flow: Hawaii Volcanoes National Park

Of course, Katy doesn't remember the lava piece of the trip = she fell asleep!!! I saw that she was kind of sleepy and that she nodded off, but she tells me that she doesn't remember the lava flow at all! Oh well, now we tease her about her $300 nap! (Yes, it was THAT expensive!)

The rest of the helicopter tour was your basic beautiful island - waterfalls, trees, cliffs, yada yada, (yawn) - just kidding! The Big Island is also gorgeous - not as lush as Kaua'i, but gorgeous.

The interesting thing, which is also kind of sad, is that on Monday, a brush fire started up in the hills near Waimea - the town where I grocery shopped. Well, it has turned out to be a MAJOR fire. Waimea was evacuated and there are some roads closed due to smoke and fire. I'm not sure if the fire is still going, but it was when we left. And since it was on the dry side of the island, with no rain in sight, it could be really bad. Kind of sad.

On Tuesday, we packed up our stuff and checked out by 11 am. Then we headed down to Kona because I'd made reservations to go on a submarine! The Atlantis sub tours has a sub ride that takes about an hour or so. We rode a boat out to the sub, then we dove down around a protected reef area until we reached about 100 ft depth. It was great because Eric never did get out to snorkel - he just wasn't up to it and was worried about getting his hickman wet (he's not supposed to go into non-chlorinated water with it, but we had a plan to keep it clean, but he was worried about the infection risk. Wise of him, really). So, this way, he got to see all of the gorgeous fish without having to get wet!

After the sub, we ate lunch in Kona and then took a drive down south along the coast and into macadamia nut country. We drove and drove and drove. I was looking VERY hard for a potty, but we never did find one, so I got very UP CLOSE and PERSONAL with those macadamia nut trees! It has been a long time since I went wee along side of the road, but in this case, there was no helping it. Man, for an island, the Big Island is BIG!!! You'd expect civilization to be not far away, but it really is!

Well, we turned around at that point and headed back towards the airport. On the way, we stopped at the Keei Cafe, which was highly recommended, for dessert. The kids had ice cream and I had a Mango Cobbler and Mike had Coconut Flan. Both Mike and my desserts had a Lillekoi sauce (Passion Fruit sauce) - oh my! Delicious!!! We were told we had to have the Lillekoi pie, but they didn't have it there, but the sauce is probably a close second! Nummy!

After that we went to the airport for our long trek home. Our flights were pretty non-eventful - just way long. Las Vegas airport was a bit of a mess - LOTS of people and we were really tired. And every time Eric had to go through security, it was a bit of a nightmare. He's in the wheelchair, so they'd kind of separate him from us - we could see thru the glass wall, but still - then they'd pat him down and wand him, and check his shoes and his pump and his wheelchair. The Vegas airport, like I said, was the worst for that. I guess it is the price we pay for security, tho. I'm just guessing that Eric doesn't really fit the "terrorist profile" tho, so was it really necessary to go to quite those lenghts?

Anyway, we made it home on Wed at 3:30 pm or so. We stayed up, but I was exhausted! Thursday was spent relaxing and recovering. Peter, the chaplain, stopped by to hang out with Eric for a bit and we played some games. Mike went into work for a while. We unpacked and put things away. I haven't really started on the mail, yet, tho.

Friday (yesterday), I slept til 1 pm, so I didn't really do much. Katy spent Thursday night with her friend, Charlotte - they were apart for two weeks, so they had LOTS of catching up to do. So yesterday, when I picked her up, we hit Target for a few necessities, then headed home.

Unfortunately, since we've returned, and especially yesterday, Eric's pain levels have been on the rise - is is his right leg, more in his groin/front of the leg joint. He tells me he can feel the tumor pressing on his joint. So, we had to increase his pain meds - the base flow rate of his fentanyl - yesterday. He also got some morphine a couple of times. Unfortunately, he's still a bit constipated from the trip - and this added meds won't help that. We are pushing the Senna-S and Miralax and he did go a little bit yesterday, but we gotta get it going more. It hurts me so much to see him in pain, too.

Well, my mother and stepdad are visiting us this weekend. They'll arrive in about 12 hours. They just want to come up and see Eric and us and help out around here. Should be nice.

I guess I'd better trundle off to bed. I'll work on more photo montages later. We took about 650 digital photos on the trip, so there should be plenty for me to choose from!

Mahalo again!

Aloha,
Kasey

P.S. I almost forgot! Last year, our friend, Angie, invited Katy and I to a St. Paul Saints game where they were filming commericals - and guess what! Katy's in 'em! Check it out! St. Paul Saints Commercials Esp #2! Who is that blonde bombshell??? Yowza!

Monday, August 1, 2005 3:16 PM CDT

Aloha!

Well, it was an interesting weekend - lots of ups and lots of downs, emotionally and physically. I think we are all ready to come home, even though we are still having fun. Two weeks is a long time to be away from home.

We have an awesome beach just a little bit of a walk from our condo - and it has incredible snorkling. Both Katy and I and Mike and I have gone snorkling. However, Eric really doesn't want to go - or even go to the beach. He is just happy with being here. He's playing computer games or watching TV a lot. So, we've been going in shifts on walks or out to play in the sand. I kind of hoped Eric would like to be out more, because he's still pretty pale, but he's doing what he wants.

I did plan some things for us to do, however. Friday's activity was kind of a bust, tho. I thought I had signed the kids up to "Swim with the Dolphins" at Dolphin Quest, but instead, it was a "dockside" activity with NO swim time. Well, that didn't sit well with Eric because the ONE thing he wanted to do in Hawaii is swim with Dolphins. I know that on Friday he was having some pain in his leg and abdomen, and when you add that to the disappointment, it spelled disaster. We ended up waiting for two hours or so at the Hilton Waikailoa lagoon beach for Eric to get to the point where he would speak to us and not throw sand or generally be awful. I felt terrible - in the end we cancelled the event and just went back to the condo and everyone was sad.

Unfortunately, Saturday was not good either. Eric was in a LOT of pain starting that morning. We gave him lots of pain meds and it made him feel sick. He just was so sad and hurting. Mike and Katy and I just hung out - napped and played on the computers. In the end, Eric fell asleep early - about 6:00 pm - and we called it a day. It was kind of sad, though. At one point, Eric whispered to me, "Mom, I think death is going to come sooner than we all thought it would." Made me cry.

Well, Sunday was a MUCH better day. Mike had rescheduled the Dolphin Quest event for Eric for Sunday - so Eric had that to look forward to. I was really very apprehensive - worried that it wouldn't work out somehow, but it did! Eric woke up with much less pain (we increased his baseline dose of fentanyl very slightly during the night and it seemed to take care of it). I was in a bad mood, and we were all bickery in the morning, but after the dolphin success, we were all in a great mood. We got to the Hilton Waikailoa early, so we needed to get a "guest pass" in order to rent a paddleboat and use the pools. Well, the Hilton has a unique thing - they only give out a few "guest passes" - after they are gone, you have to rent a room. And guess what, $160 will give you a room for just the afternoon - we had a 7pm checkout! Freaky huh? What those hotels won't do to make money!!!!

Anyway, we hung out in the lagoon for a few hours, had some lunch and then Eric went to the Dolphin Quest - Katy had decided not to - It was 1 1/2 hours total, but only 30 minutes or so in the water. Mike went with Eric to the "Sealab" portion, where the kids learned about dolphins, coral, sealife - and Eric knew EVERYTHING. He told how coral is built - he knew about the baleen feeding animals - he knew about dolphins and whales! It is funny, he doesn't always seem like he's paying attention, but Eric learns EVERYTHING. All of those trips to the zoo and the books he's read are all in that head, with the facts just waiting to be retreived. Incredible.

Well, after the lab portion, it was into the water for Eric. They divided the kids into 3 groups and had 3 stations. Eric was a little wary of the water at first - said it was cold - so he kind of hung back, but the men and women running the show were very patient and made sure Eric was right up there. I videotaped the whole thing and we took some photos - but the best photos are waiting to be purchased (of course) this afternoon. They made sure that the kids had their backs to us the whole time, of course.

In the end, it was good and I felt the tight band that was wrapped around my chest loosen - Eric had gotten what he really wanted and he was happy for once. Afterwards, Eric and Mike went to the room that we rented for a few hours and showered while Katy and I swam a little more in the Hilton's awesome pools and went down the water slide. Then, after Katy and I showered, we decided to go down to Kona for some dinner.

We went to the Kona Marketplace and Eric finally got to pick out an oyster and open it up to get the pearl. It was a very nice white pearl that we had set into a pendant - a silver gecko that is holding the pearl in its mouth. Katy also got another pearl, but didn't like any of the settings. She got a nice silver one.

After the pearls, we went to my favorite shirt store in the whole world - Crazy Shirts. They have lots of cool t-shirts - usually embroidered. We did some damage in the store there and then headed down the coast to get some dinner at Bubba Gump Shrimp Co. I know, it's not a local joint, but it was very good.

We got back to our condo pretty late - it was pitch dark except for the awesome stars in the sky - I don't think I've ever seen the sky that full of stars! I'd love to do a skywatching trip to the top of Mauna Kea sometime, but not this trip. We are a little worried about taking Eric up to the top - it is 13000 ft above sea level and with reduced Oxygen, it might be a problem with the tumors in his lungs. Just as well, really - those trips are like 8 hours long and the kids wouldn't appreciate it.

So, today we are doing another helicopter tour - this time it is of the Big Island. We should be able to get a good view of lava flow - it is 2 hours long!

Tomorrow, we check out of our condo at 11 am. Then we are scheduled to go on a submarine ride - the Atlantis dives - in the afternoon. Then we'll hang out in Kona until 7:30 pm or so, when it is time to head to the airport for our 9:30 pm flight. We fly to Honolulu and change planes and then fly all night to Las Vegas. We'll arrive in Las Vegas on Wed morning about 6 am local time. Then we'll catch a 9:30 am flight back to Minneapolis/St. Paul. We get in about 2:30 or so on Wednesday. It'll be a LONG night, but we are all ready to come home. I wish I could come back here again soon, but I know that it'll be a while. I just love Hawai'i - it is gorgeous!

Of course, we oould purchase the condo we are currently staying in - it is for sale. 2 bedroom, 2 1/2 bath, full kitchen - only $1.4 million. Any takers? Our Condo L-101

Aloha!
Kasey

Friday, July 29, 2005 1:45 PM CDT

Aloha and e komo mai - Welcome to the Big Island of Hawai'i!

We just got here yesterday and already Katy and I have done some damage to the jewelry stores here! We arrived early - and don't EVEN get me started on getting the rental car (it wasn't ready - and the cars weren't ready for about 30 other families, so Hertz had a huge line) - so we decided to get something to eat in Kona before we headed up the coast to our condo. So, we crawled along in traffic in Kona with our car loaded to the hilt with luggage and found a group of restaurants/shops called Coconut Marketplace.

The Hard Rock Cafe and Outback steakhouse are both in the marketplace, so we figured we were pretty safe to eat there - but Outback wasn't open yet - Strike 1. Then we headed to the Hard Rock. Well, Eric was carrying around his Harry Potter book - so that gives you a clue about how Eric was feeling about a LOUD, HARD ROCKIN' cafe (i.e. he flipped at the noise!). So, Strike 2.

Luckily, there was another little Sports bar/grill called Oceans that was FABULOUS! It was quiet, open to the air, and had great food! It worked for us all.

After that, we decided to hit Hilo Hattie's in Kona - it is a kitchy kind of place - very tourest-y - but kind of a necessary thing to do in Hawaii. I had some coupons for free coffee mugs, so we HAD to go. Well, guess what - they have a jewelry store inside called Maui Divers Jewelry, with the Pearl-in-the-Oysters - you pick out an oyster (for a small fee), they open it up for you and you get the pearl. Well, if you get that pearl set (for another small fee for the setting), then you get to open ANOTHER oyster for free! And if you get THAT pearl set, then you get ANOTHER.... Well, Katy had some really good luck doing this. The first oyster had twin black pearls in it - a perfect matching set for earrings. So, we had those set in earrings. The next oyster had a very beautiful silver pearl - good sized! 9-10 mm or so, so we had that one set in a necklace. The next oyster had twin gold pearls - also perfect for earrings! The final oyster had a gorgeous pink pearl - very lustrous. At that point, however, I figured we'd spent enough money and so we didn't get the pink pearl set. Katy said that I can have the pink pearl and she's going to give the other jewelry as gifts. Eric decided to continue to read, so he didn't get any pearls this time around. But, there is lots of time!

We arrived at our condo around 2:30 pm and we REALLY like it. It is a different type of a vacation from staying in the Hyatt, though. The condo is 2 bedroom/3 bath with a full kitchen, washer/dryer, and a gorgeous yard with a view of the Royal Fishponds - not the pool or the ocean. In fact, it is a little bit of a walk to get to the pool and ocean this time around, but Mike and I walked all around last night to get the lay of the land. It is a very nice beach at the Mauna Lani resort (where the condo is located), which is perfect for snorkling. Before I left MN, I purchased snorkling gear (it was on sale at Target - I LOVE that store), so we are all set! I can't wait!

Last night, after we unpacked, everyone here was having a good time just chillin' - Mike and Katy were playing World of Warcraft and Eric was watching somw TV, so I took the opportunity to head up to Waimea and go grocery shopping. It was kinda weird - the town in 2500 ft above sea level, so I was going up up up for a long time. Then, around 2200 ft up, it started raining. It rained the entire time I was up there, then when I came back down, it cleared up again and I saw a gorgeous sunset on the drive down.

We made dinner here - nice and relaxing - and MUCH cheaper than hotel food. Eric, unfortunately, threw it all up. He didn't eat much yesterday - some breakfast and that's it. He didn't eat at the restaurant. His leg is starting to bother him more also. He said that he can't sit cross legged any more - he can feel his tumor and it bothers him. This morning, he woke up in some pain also due to his leg. He's in the tub right now. So, we'll keep on with Zofran to help with the nausea/vomiting - try to anticipate and pre-medicate him well before he eats - it does stimulate his appetite and keeps him from throwing up. He seems to be pooping OK now - with some help from laxitives - so I don't think the vomiting is from being FOS - maybe the tumor, maybe residual effects of radiation, who knows. We'll also keep on with his pain meds - we'll monitor it today and see if he needs extra "bumps" - if so, we'll contact Children's and up the baseline fentanyl dosing. Good thing we brought LOTS of pain meds. We have only used 1 dose of morphine - and we brought 100 doses! We also have LOTS of Fentanyl left - the bag with all of Eric's meds is pretty heavy to drag around, but it is a good thing. We are slowly making our way through all of the IV fluids as well - we brought 7 L of fluids with us at first, then had 8 more delivered in Kaua'i. So, we still have 7L left - that really weighted down the suitcases! We are also working our way through the cathedar supplies - one per night - they are light, but bulky in the bags. Good thing we are using it all - more room for souvineers!!!!

Aloha!
Kasey

Wednesday, July 27, 2005 11:07 AM CDT

Aloha! It is 6:07 am here in Hawai'i, for those of you who care about the time difference. We are having a great time here!

Eric is feeling pretty good, all in all. Well, no worse - and actually quite a bit better - than he has in months. He is still limping quite a lot, especially in the mornings, but he isn't really having any leg or foot pain. His nausea, in general, is better, although he did throw up last night. We are keeping him well-hydrated with IV fluids at night. We are keeping his bladder in good shape by cathedarizing him at night - this makes sure his bladder is emptied well each night. The only thing we are stuggling with a bit is, well, poop. He hasn't has much BM since we arrived, so the day before yesterday, we started in on the laxitives. It is a tricky thing, though. Too litle and he won't go, too much and he'll go too much and not have fun. I think we got some started yesterday, though. But, with the vomiting, I'm not sure if we got enough. But maybe it was all of the miralax that upset his tummy also.

Eric has taken to walking around quite a bit more here on the hotel grounds - he told me that he needs to strenghten his leg and that'll only happen by walking on it. Determined little bugger.... Well, I've been telling him that for months, but it has to be HIS idea, huh?

So, onto the trip highlights....

I won't go into too much detail - my journal is up to 13 pages so far, and that is too much to type here. My perfectionist tendencies tend to take over and I want to document EVERYTHING.

So, Las Vegas first - We left on Wednesday evening and had a great flight. It was HOT when we arrived and Eric got a little disgrunted on the jetway - which was probably 110F easily, so we hustled into the airport and met my dad at the Bag Claim. By then we were pretty tired and hungry, but the kids were still very impressed by the size, shapes and colors of all of the hotels on the strip. They were especially fascinated by the Luxor - the giant pyramid.

We stayed at the MGM Grand - I got a really good deal since Mike and I have stayed (and played) there before. It is huge with thousands of rooms, a pool area with like 5 pools and a lazy river, an arcade, about 10 restaurants, shops, and a lion habitat.

We ate at the Rainforest Cafe (I really wouldn't recommend it for anyone who lives in MN - it is pretty much exactly like the one in the Mall of America, including the bad service) and saw one of the lions in the lion habitat. Katy really wanted to watch us gamble, but no dice (haha).

The next day, Thursday, Eric spent sleeping and Katy spent at the pool. I took the morning shift with her - and my Dad joined us around 10:30 am. My stepmom, Suzy, joined us for lunch and then in the afternoon, Mike and Dad and Katy were at the pool for a few hours. Eric was up by then, but it was SO hot outside, he didn't want to go swim. (He was playing his blasted GameBoy, so that probably was part of the issue). It is OK, tho. Katy got pretty sunburned, even with 50 sunblock! So, Suzy, Eric and I hung out in the hotel room in the afternoon.

That evening, Mike, Katy and I went to a Cirque du Soleil show - Mystiere. It was a late show (10:30 pm), so it was a challenge to keep the kids awake and alert and happy, but we hung out at the Mirage and Treasure Island - ate dinner late, read books, played at the arcade. The show was AWESOME - and we had great seats! Eric and Katy LOVE these shows - I'm always amazed, but they are drawn to them!

Friday we got a late checkout, so we ate a late breakfast at the huge buffet. Then we packed up and checked out and Dad took us over to the Excalibur for a few hours to hang out and shop. Then we loaded up and went over to Suzy's place while we waited to go to the airport.

Our flight wasn't until 2:45 AM on Saturday morning, so Friday night was spent napping and chatting. Mike managed to get our laptops going on the internet at Suzy's place and we taught Dad how to play World Of Warcraft. He's considering getting it, so we thought an intro would be nice. It was a good thing because, no offense Dad, you were pretty terrible at first. But, after a few hours of instruction, I think he'd be able to manage on his own.

We also got to see Suzy's Mom and he son, my stepbrother, Patrick. I haven't seen Pat since we were like 16 years old. It was good to see him! Katy and Eric liked hanging with Pat because he was playing an online game called Half Life Counterstrike - a shoot em up game. Katy and Pat hung out for HOURS! It was pretty cool.

The flight for Hawaii wasn't nearly as bad as I thought it was going to be, really. Considering we were flying all night, it was OK. We all slept pretty well on the plane flight to Honolulu, so we were feeling pretty well by the time we actually arrived at our hotel here on Kaua'i.

Our hotel is GORGEOUS! The view from our room is amazing, the pools are amazing, the beach is amazing (the prices are REALLY amazing....). Katy has been taking full advantage of the pools here. We even got Eric into the pools on Sunday. He's not really into swimming all that much. I thought he would be more, but not really. He just enjoys sleeping and taking in the views.

We have kept busy - Saturday night, we saw the Torchlighting Ceremony and a Hula show at the Seaview Terrace (we also played a rousing game of Morgan's Revenge - a betting game). Sunday night was spent at a Luau, which we didn't end up staying for the whole thing. Eric and Katy were tired and kinda bored, so we stayed for dinner and about 1/2 the show.

Monday morning we got up REALLY early to catch a Charter Catamaran tour of the Na Pali Coast. This has been, by far, the highlight of the trip so far. During this 6 hour trip, we saw Bottlenose Dolphins, Spinner Dolpins Hawaiian Green Sea Turtles, a Monk Seal (extremely RARE and highly endangered). Katy and Mike got "rained on" by a waterfall when the captain took our boat up to a sea cave. We snorkled and saw a zillion fish (Eric passed on the snorkel part of the trip, tho). Finally, we rode the bow of the ship and had a great time with crashing into the waves. We LOVED that part! Eric was smiling ear to ear!

Yesterday, we went for a Helicopter tour of the island - it was also awesome! The views were spectacular! Last night, Eric and I went back to the Seaview Terrace to watch the Torchlighting Ceremony and the Hula Show again. We savored the setting sun and balmy evening air. And we played some more Morgan's Revenge and Eric kicked my butt. Mike and Katy stayed in the room to play some World of Warcraft - as Mike said, where better to play? Whatever, I say....

Today we have kind of a "down day" - this is our last day on Kaua'i and in the fabulous resort (Grand Hyatt Regency - Kaua'i), so we'll spend it on the beach and in the pools.

Thursday, we are set to check out early and then fly to the Big Island, the town of Kona. We are staying at the Condos of the Mauna Lani resort - which will be nice. The resort looks awesome and we get a two bedroom condo. We've, once again, got a rental car, so we'll plan on doing some travelling to see the volcanos, the cool rainforests, the black sand beaches, etc.

Of course, I know that if it was just Mike and I, we'd be "doing" a lot more - driving trips up the coast, snorkling, hiking, etc. But with Eric and Katy, they just would rather take it easy, so that's what we are doing. Eric likes doing things, but he also likes lots of down time to just read or play his game. And that's OK too. I'm just glad he is feeling well and is having fun!

Aloha!
Kasey

Sunday, July 24, 2005 5:21 PM CDT

Aloha!

Super quick - we made it here just fine. I've started a notebook with my "stories" from our trip, but so far, we've done so much - I'll transcribe a little later.

We are staying in the Grand Hyatt Regency Resort on Kaua'i right now. We are getting ready to head to the pools (note: poolSSSSS) Gotta dash!

Bye!
-Kasey

Monday, July 18, 2005 4:50 AM CDT

Scans were Friday and the results were not good.

Mike and Eric headed in early for radiation and then to prep for the CT scans of Eric's pelvis and chest. I stayed home until Katy woke up, then I headed in to the clinic. On the way there, I stopped by a gas station to fill up the jeep. When I looked down at my feet, I saw a penny. Well, I picked it up, hoping that it would bring us all good luck. I haven't done that in years. Well, it didn't really bring me the results I was looking for. I guess it is too soon to really know if it is good luck in the grand scheme of things, though.

I arrived at the clinic to see Eric and Mike both online playing World of Warcraft together. It was a nice sight. Mike handed me a CD-rom that was in a sealed envelope - the CT scan images from that day. The radiologist hadn't had a chance to review them yet, but they do give us copies of the images when we ask.

So, we all, including Eric, decided that we wanted to see what was going on. I put in the disk and we looked - even with my untrained eye, I could tell that it really wasn't very good news.

The tumors in Eric's pelvis are much larger. His right kidney is enlarged because in spite of the ureter stent, the kidney isn't draining well. Eric's lungs have many more tumors in them - and some are quite large.

We all looked at these images and Eric said he somehow knew that was the case. So, Mike and Eric went back to their game and we waited for the oncologist to come back and tell us "the bad news".

Dr. Messinger came to see us about 1/2 hour later and asked if Mike and I wanted to come into the hall to talk. Eric asked him, "Are you going to talk about my scans? It's bad news." Dr. Messinger said, "Yes, Eric, it is bad news. Let me talk to your parents for a little bit." To which Eric replied, "They are MY scans! You stay here and talk." So, we did. Dr. Messinger proceeded to tell us what we had just seen on our copy of the scan images. He was kind of baffled because Eric kept saying "I know..." to everything he said. So we told him how we'd seen the images already and we all had a little bit of a laugh because he wasn't really telling us anything we didn't figure out for ourseves. He told us we were all too clever for our own good, but that he'd come to expect that from our family.

At that point, I was pretty tearful - there were lots of questions in my mind, but I couldn't seem to be able to speak. Eric, however, was pretty calm and managed to ask the questions that I was unable to spit out! He asked "How long do I have?" To which the doctor was unable to give him an answer - these things are highly unpredictable. He asked "Do I still have to have radiation?" We agreed that, no, Eric didn't have to have radiation anymore - it didn't seem like it was helping, really. It must be the pain meds that he is getting that is helping him feel better. Eric asked "Is the tumor growing that is causing my foot to be numb?" Yes, it was indeed the tumor. Eric then kind of sighed and said, "Well, it must be time for me to write my will." The doctor said, yes, it was probably time for that.

At this point, Eric decided that he'd talked enough and had enough info and that he wanted to go back to his game. So, Kirsten, child life specialist, sat with Eric while Mike and I met with Dr. Messinger and Kathy, our nurse, to talk some more.

Dr. Messinger explained that the tumor growth in his pelvis was pretty significant during the last 3 weeks. His kidney is hydronephrotic again - enlarged and full of urine. The lungs have really too many tumors to count. So, moving forward, what can we expect?

At this point, we want to focus on quality of life and minimization of pain. Treatment options are limited and would not extend Eric's life and would make him very sick. Dr. Messinger was very clear - he would send us to any hospital/doctor we wanted to go to, but he does not recommend it. Eric has seen all of the chemo agents that are known to cure rhabdo, and his rhabdo is resistant. Any further chemo would reduce the quality of his life.

Several things could happen: 1) There could be complications from Eric's kidney and he could experience bleeding internally. He did not, however, recommend surgery at this point - it would add pain to Eric's life and we want to avoid that right now. 2) The tumors in Eric's lungs may cause bleeding in his lungs and he could die from that. 3) However, the most likely scenario: Eric will become more and more sleepy as the cancer starts to take over more. Eric's pain may start to increase, in which case, we will increase his pain meds. The increased pain meds, along with lower lung capacity will cause his respiration rates to drop. Lower respiration rates will cause increased carbon dioxide levels in his blood and brain, which will, again, make him more sleepy. Eventually, he will probably just go to sleep and not wake up. This is the most desired pathway for Eric right now - we will manage pain, so that he doesn't feel any and he'll just die in his sleep.

However, in the meantime, Eric is feeling pretty good right now. Ironically, he feels better than he has in a long time! His blood counts are great, his appetite is up, he's got some energy.

We asked about travel with Eric and Dr. Messinger told us that we should travel as soon as possible. Eric told us that he'd like to go to Hawaii. He wants to see volcanos and dolphins and the ocean. So, this weekend, I've been planning a trip for us to go to Hawaii this week. It feels very strange to make plans for THIS WEEK, but there you have it. This morning, AAA office opens and we'll get things finalized. I'm kinda agonizing over how long we should go, but tentatively, we are looking at leaving on Wednesday and get back the 1st week in August.

So, LOTS to do by Wednesday!

How are we all holding up? We are all dealing with it slightly differently Well, Friday, we were all pretty upset. I went home and cried and took a nap, then felt better in the evening. It was a friend's birthday and a group of ladies and I had a surprise party for her. I was feeling a bit weird - kinda loopy/tired - but was OK. I just kind cut the evening short, tho.

Eric was doing fine until about 5 pm Friday. Then he and Katy had an arguement. Eric wanted to whistle and Katy told him it was giving her a headache. Eric broke down and cried for a while. He was upset that Katy was going to be an only child again. I told him that she'd never be an only child - that he'd always be her brother and that he could come down and visit her and us when he's an angel. He turned and glared at Katy and said, "Mom, I'll come down and visit you and Dad, but I'm NOT going to visit Katy - she doesn't even like me to whistle!" Well, at least they are still acting like normal brother and sister! Eventually the arguement blew over and they made up and played together.

Mike's been doing OK - a little teary, like me, but OK. Katy's been kind of pissy, actully. She seems angry at Eric all of the time. He can't do anything right, he's always annoying her, she's always got a headache. So, Saturday night, Katy chose to spend the night with a friend and we let her go. She just needed to decompress, I guess. Then, when I picked Katy up yesterday, she and I went to see "Charlie and the Chocolate Factory" - just mom and daughter. She told me that she's pretty excited about Hawaii and that she's decided that she wants to travel all over the world as she gets older. She kind of avoided talking about Eric, though. I know she's thinking of him, though. The reason why I'm up and typing this this morning is because she woke up up at 3:30 am - she was yelling in her sleep, "I'm coming! Hang on a sec, Eric!" I'm not sure what she was dreaming, exactly - she didn't wake up. At least she's saving him in her dreams!

So, the next couple of days will be busy: Make travel plans, stop the mail, get people to water plants/take care of pets (well, our next door neighbor will do that), get medical supplies from Home Care to take with us, pack. I'm making lists and trying to make sure we don't forget anything. Mike's telling me to not worry so much. But he forgets, doing all of this keeps my mind productive - I won't fall into a weepy cycle if I'm working on a trip. There is a time and place for weepy and I am allowing my moments for that, but I don't want it to ruin my time with my family.

Anyway, I'll let you all know what our plans are before we go. (Anyone want to babysit 4 mice?)

Thanks,
Kasey

Wednesday, July 13, 2005 6:23 AM CDT

Hi! Quick update - I talked with Dr. Farniok, Eric's Radiation Oncologist, yesterday about "the plan". Starting today, they are going to block out the area of the radiation that will hit the spots on his body that was radiated in Sept 2003. They'll continue to radiate the tumors in his pelvis (other than those spots above) for about two more weeks.

They are also continueing to radiate the spot in his groin. Eric still continues to insist that is it is scar tissue and tells that to the radiation crew every day. But, he is being very good about the whole thing. He grumbles like an old man, but he gets up on the table and lies very still for the 10 minutes or so thru radition. He has his "buddies" - Simba and some other stuffed animal - and his game boy or a comic book. (His fav. comics right now are Richie Rich and Archie/Veronica/Jughead). Eric's quite into comics - enough that he might even be tempted to leave the house to go to a comic book store today! (I'm hoping)

Today, I think Peter, the chaplain will stop by for a visit. Margaret, the child life specialist, will stop by to visit Katy today as well. And I think we've got a nurse visit as well.

Tomorrow, Eric meets with Dr. Troy, his psychologist. Friday is scans and Barb, the healing touch therapist, is coming by the house as well.

Well, with being off chemo, Eric is feeling much healthier. His hair is coming back very well, now - he's got a head full of stubble. His color generally looks better as well - he's still pale because he doesn't go outside, but he looks pinker - less grey/pasty.

Unfortunately, his leg is pretty much totally numb. He's got a pronounced limp and moves very slowly. His appetite is up, but he's been throwing up more - from the radiation? He says his gut hurts most of the time and it hurts to pee. So, he's better, but he's not all at the same time.

Well, since radiation continues, I'm off to get dressed and rouse the troops for the day....

Take care,
Kasey

Sunday, July 10, 2005 6:38 AM CDT

Orville died yesterday. His mom posted on my Rhabdo mailng list:

My beautiful baby boy is gone. He passed at 5:45pm today. About an hour ago. He woke up this morning and was breathing really fast so we called Hospice. They came and checked him and even though he was breathing fast she said he sounded ok, then his breathing changed throughout the day. He became more irradic and finally stopped.
My heart is just aching right now, I don't even know what else to say.
Thank you for all your prayers and messages.

Leslie, mom to Orville, One of God's newest angels

Jason has had a series of accidents in the past several days:

Hi Everyone,
I've been trying my best to get caught up on responding to posts and welcoming new members, but it seems like I will never get caught up. I do read every post and remember the children and families on the list in my prayers. Really, even though we are spread all over the world, you are constantly in my thoughts.

Jason has had an eventful week. I posted on his website that he was in a jet ski accident. He went to Katie's family's cabin on Sunday, July 3, and he and another family friend were out on two jet skis. Jason was following and there was a big wake from a boat that caused the jet ski in front to spin out and the 2 jet skis hit head on, throwing both Jason and the other guy off. Both had flotation devices on. The other guy is a fireman. He was unconscious, floating face down in the water. Jason turned him over and held him until help came. He had a broken arm and a busted lip that required 72 stitches. Jason just had a small cut on his knee, sore shoulders and sore thumb-his knee and leg are now bruised.
The other jet ski was pretty damaged. I really thought it was great that Jason even wanted to try something like this. It was one of the things that he said, "I guess I'll never get to do that." So now he has-I just so wish that it could have been all fun. Even though Jason doesn't talk about it, I know that he feels terrible about hurting someone and damaging the jet ski. Some people have said that Jason saved the guys life by turning him over so he could breath, but Jason says, "Yeah, I saved his life, after I nearly killed him." They went with the fireman to the hospital and he was released later that day.
The rest of the day Katie and Jason and her family rested at the cabin.
They had fireworks, but Katie doesn't like the noise or the smoke so she didn't stay outside.

So today, Katie and Jason went out to get flowers and a Hollywood video Gift Card for the fireman hurt in the jet ski accident. Katie had to make a left turn to get out of the video store and go home. Traffic was backed up at the light, but some people in 2 lanes made room for her to get out and she was inching out into the turn lane when a car came flying through-very quickly to get up to the light over 50 feet away and smashed into the driver's side ripping off the front bumper and more.
Katie's airbag opened, but not Jason's. Jason called from the scene of the accident. Katie was crying in the background. No one in either car was seriously injured, but both cars had to be towed away. The police office placed all the blame on Katie, saying that she was driving recklessly. The other car had a teenage couple and children -and didn't have proof of insurance-now required in TN-and without it you get a ticket, but Jason said they didn't. Katie's mom brought Jason home. He sounded really shaky-with a quivery voice. He said he was just shaken up from the wreck. He went out and bought Katie some food, but came straight home as she just wanted to rest. She came over tonight. She says that she is sore all over from the wreck. She said the same police officer gave her sister her first speeding ticket and had also given her mom a ticket at one time.

You know, Jason has always been accident prone-from the time he started walking. We had learned to live with that. Every 2-3 years he had an emergency room trip. We thought he would grow out of it someday. I wish that was all we had to deal with and not cancer. On Friday, Kristen, the hospice nurse did his counts-platelets are now 255,000 - up from 199,000; WBC are 4.2 up from 2.7, but hematocrit is 30 which is down from 35. Hospice is now administering his Depo-testosterone injection.
Originally it was every 2 weeks. When hospice started giving it, 4 weeks ago the nurse said that it had been changed to every 4 weeks. I wonder who changed it and why. I thought maybe they changed it because they don't expect him to live long, but his testosterone levels weren't checked. I guess I need to check with the endocrinologist. I haven't noticed any other changes with him. The visible tumors on his arm, chest and shoulder seem about the same. He says that when I don't give him the OTC supplements on Bill Peeples anti-angiogenesis protocol that the tumors seem to grow. I can't tell. His belly seems a bit more rounded and his port doesn't stand out as much from his chest as it used to, yet he hasn't gained weight-I just wonder what the tumors in his retroperitoneal area are doing. I wish that we could have scans to see, but Jason sees no point in knowing. All of us are just hoping and praying for a miracle.

Pam - mom to Jason (19) Stage 4 ARMS dx 2/6/04 relapsed and on palliative oral Etoposide and hospice - praying for a miracle www.caringbridge.org/tn/jasona/

On the plus side, Jesse is doing great! It looks like he is out of ICU and on his way back to the hcspital floor for a few days, then home! I'm so psyched about that!

So, what is going on with Eric? And the rest of us? Well, Eric's doing OK - in a not great kinda way. Everyday is one more thing - he's never totally feeling well. But, he's not doing badly either.

Eric's stent surgery went fine. We chose to NOT put in an epidural - the PCA pump with the Fentanyl is doing fine. The stent surgery made him VERY sore for several days. This was done on Tuesday - Katy amd Mike came along with us to the hospital and it was an OK day, but very busy day for us all. First, we stopped by the clinic for blood counts at 10:30 am. Then, it was off to radiation at 11:00 am. Finally, we checked into short stay at Children's a little after noon. Eric's surgery was scheduled for 1:30 pm, so we were early, but Eric played his Game Boy. Katy and I got a bite to eat about 12:45 pm and when we got back to the room, Mike and Eric had already gone up to the Surgery waiting room. And there we sat - they finally got Eric into surgery around 2pm. Dr. Wipf performed the stent removal/replacement and he told us things went well. They even took some pictures for us - not very exiting - just photos of his stent in his kidney and bladder from the inside! I'm not going to post those, if you don't mind. It is a good thing that we replaced Eric's stent, tho. Dr. Wipf said that he was starting to get Kidney Stones. Hah! I was right! I'm sure the high blood pressure from a few weeks ago was due to a kidney stone!

Anyway, when Eric woke up, he was in quite a lot of pain - he was yelling at us all - but we kept bumping his PCA pump. So he got LOTS of fentanyl that day and the next. Eric had a foley cathedar in after the surgery, which was a good thing - his penis was pretty red and sore and scraped up looking. He passed a lot of blood in his urine for a couple of days, which is kinda scary, but since we'd been thru this before, we expected it.

Wednesday, we tried to really stay on top of the pain with lots of pain meds. I had Eric bumping the PCA pump every 10 min, which is the lockout time - he can only get a bump every 10 min. We also supplemented that with Morphine at times. It kind of doped him up and he slept a lot, but I think at this point, sleep is good. Also, on Wednesday, at radiation, we did the setup (simluation) to radiate the new small lump we found in Eric's groin - left side. Eric insists it is just scar tissue, but I'm sure it is a small lump. They set up another radiation field and began radiation on it on Thursday. It is only another couple of minutes out of our day, so it is good to get this done. I can't help but wonder if we shouldn't have done all of this radiation a year ago, though. Right after Eric relapsed. Why didn't we?

But Thursday, Eric was feeling a little better and by Friday, he was pretty much back to his old self. Unfortunately, with all of those narcotics, it slowed his bowels down and he became constipated yet again. Friday was a pretty miserable morning - he needed to go, but couldn't and it was causing Eric quite a bit of distress. There was still some pain in his penis when he peed and pain is his gut. He wanted more pain meds, but pain meds were the cause of his problems!

All of this was taking place in the clinic on Friday. He was in for his check up and to get another dose of Avastin. Dr. Messinger, who examined him, thinks that maybe between the radiation and the avastin, the tumors in his pelvis may be shrinking a little. We won't know, however, until the next set of scans, which will take place next Friday, 15 July.

While in the clinic, poor Eric spent more time sitting on the potty than in a bed. The doc wanted to send him down to radiology to get an enema while on nitrous oxide - laughing gas. Eric is ADAMENT about NOT wanting an enema. He would rather get the golitely down his NG tube and spend days in the hospital than get an enema. AND BOY is he stubborn about it. We did convince him to take two Senna-S tablets and drink some Miralax-spiked water. Dr. Messinger let us go home with the promise of calling if he didn't go or started vomiting, etc.

Well, thank GOODNESS - but all of that worked. By Friday evening, things were moving again. Unfortuanetly, as these things go, they worked VERY well, and Eric spent LOTS of time in the bathroom on Friday night. And he no longer wants to be alone - so either Mike or I are with him. kind of icky - but that is what you do for your sick child. You help him, no matter what. You help him feel better and you help him get cleaned up. And you just be there, because he tells you that your presence is calming.

Well, with everything going on lately, Eric is definately reverting - much more childlike that ever before. He calls out to me at least once every 15 min or so - just to make sure I'm there. And if I'm in the same room, he's always telling me he loves me. All the time. I, personally, don't mind, but Katy is getting kind of weirded out. She's commented on it. The tiring thing, though, is that I am constantly on call with Eric. He flips between very loving to very angry and back to being scared then happy. He gets angry if I leave the room. I have taken to telling Eric my every move, so that he knows what I am up to before I do it "Eric, I'm going to the bathroom now - I'll be right back". Even then, there is a good chance he'll call to me and ask me what the heck I'm doing in there! It is almost amusing. I can escape every once in a while, though - Mike can take over for a bit.

We did get Eric out of the house finally, though. On Thursday, he and I made a quick run to the bookstore - it was even his suggestion! Then, yesterday, we did go to the zoo for a few hours. It was nice to get out. Although Eric and I do get out every day for radiation, it just isn't the same.


So, what is our plan?
1. Continue radiation: The original field - his large tumors in his pelvis - will be radiated through this Wednesday. Then we just continue on the small lump in his groin for a few more weeks. Yes, radiation is EVERY DAY. Yes, it is at 7:30 am every day. Yes, it is tiring getting up every day, but we are hanging in there.

2. Scans: Friday, 15 July.

3. Talk with Dr. Neglia again about options for chemo. I almost hate to mess with it. Eric's counts are GOOD right now!

Hemoglobin: 12
Platelets: 202,000
ANC: 2000

AWESOME! And yesterday, I noticed that he's getting stubble on his head! Hair! His eyelashes are back and his eyebrows are back. He's eating a little more (when he's not constipated or in too much pain). More chemo would just ruin all of that. And would it really do any good? Anyway, no appointments yet - we will wait for scans.

4. Radiation on Eric's lungs? His lungs still sound clear - but the scans will tell us more.

5. ??? wait, i guess....


It is 7:30 am. Everyone is still sleeping here today, so I think I'll go back to bed now....

-kasey

Tuesday, July 5, 2005 9:08 AM CDT

Happy 4th of July! Well, it is the 5th now, but the thoughts are the same. I hope eveeryone had a good, safe time.

On Thursday afternoon, it looked like Eric had picked up a urinary tract infection, so on Friday morning after radiation, we stopped by the clinic and gave a sample. That afternoon, the docs sent out some IV antibiotics (Cipro) and IV fluids. He got the antibiotics every 12 hours thru the weekend. It was fairly painful for him to urinate - so we kept the foley in all day for him on Saturday.

Eric fell asleep at 11 pm or so on Friday and slept until 7 pm or so on Saturday - I guess he was tired!

We did some fireworks last night - after we woke Eric from a nap at 9:45 pm. Amazingly, he did go back to sleep that night.

He's feeling pretty good now - knock on wood - tho is right foot is numb/painful at times.

Argh - running out of time today. We have to leave at 10 and I'm not dressed. Today is Eric's surgery to replace his stent in right uretera and add one on his left ureter. He'll also get radiation today. Long day ahead.

Katy's coming with us - tho she doesn't want to really. Should be interesting....

-Kasey

Thursday, June 30, 2005 5:10 AM CDT

***Jesse, one of our Rhabdo friends at Children's, is in ICU - be sure to send lots of prayers!!! ==> Jesse J


Hi! Last night we had some cool thunderstoms here - the lightning was pretty amazing. The wind was strong, though, and knocked some stuff over in our yard.

This week is SO much better than last week! We do seem to actually have Eric's pain managed pretty well - that doesn't mean it is gone all the time, but it means that he has some control over it and it isn't ruling his life. The PCA pump is nice. Eric hates being tethered to it, but it is pretty small - about 4" x 7" x 2", so isnt' too cumbersome. The only bummer is that the tubing and the cord for the button he pushed to get more meds tend to tangle and get caught on things - but this is very manageable.

The only thing that had us really worried this week so far was his blood pressure. On Monday, he was getting ready for a red cell transfusion here at home. While the nurse was taking his vital signs, she noticed that his bp was 130/90 - which is high for him. Well, all that evening, it stayed high. And the next day it stayed high. And yesterday morning it was really high: 150/103. Well, it was kind of worrysome.

The possible causes, we felt, could be 1) the Avastin - the chemo he received on Friday, which has a known side effect of high blood pressure, 2) the Methylpred - steriod we were giving Eric on Fri, Sat and Sun to reduce possible swelling due to the radiation or 3) kidney problems.

Well, yesterday morning, for no apparant reason, his blood pressure returned to normal: 106/76. We aren't exactly sure why, but right before it started to drop, Eric was complaining of nausea. Then he rushed to the bathroom to go pee. And he was peeing a LOT yesterday. And he said ir was really hurting to pee - like there were crystals in his urethra. So, we are thinking that he may have had a kidney stone or that right ureter stent got blocked and the kidney was backed up.

At any rate, Eric was much more like his old self yesterday afternoon. He says that his leg is feeling stronger and he is walking around a little more than he was. He doesn't seem like he is getting ready to topple every time he stands up! He is much less shakey. He is starting to have some urinary control again as well - he actully can tell when he has to pee. Which is all the time yesterday. But, it is good to know that he's getting some feeling back. And his foot isn't totally numb anymore. - there is just a little bit of movement in his toes, but it is better than none. And he was actually in a pleasant mood at times!!!

Eric is still very emotional and hates to be in the house - or even on a floor of the house - alone. So, Mike and I are constantly "on call", but it's OK. It is nice to see him smile again.

So, it looks like the radiation is doing what it is supposed to be doing - and helping shrink those big pelvic tumors a little. So, whether it is God or radiation - I am just very thankful.

Today, we continue radiation and afterwards go in for Eric's pre-op physical. Tuesday, July 5, Eric is scheduled to have that right ureter stent replaced and put in a ureter stent on the left side. We have been debating about doing a semi-permanent epidural for pain control, but it looks like his pain is well managed right now. Unless things change in the next few days, we'll probably not do that. Why mess with something that ain't broken, huh?

Well, keep those prayers coming!

Thanks,
Kasey

Monday, June 27, 2005 8:35 AM CDT

**Prayers needed: Our buddy, Tucker, passed away from Osteosarcoma on Saturday ==>Tucker

**More prayers needed: Our friend, Jesse is back in the hospital. He is having a very rough time right now ==>Jesse

**And More Prayers: Jason is struggling right now ==> Jason

Last week was very eventful and very rough. Just a ton of things going on.

Monday, Eric was supposed to start hypnosis to help him manage his pain. However, when Cindy, the person who was going to teach him, arrived, he was in a lot of pain. The pain was radiating down his leg. Well, we gave up on the hypnosis session, and then decided to have a nurse come by and evaluate for pain. We managed the pain that day using morphine and fentanyl.

Tuesday, the nurse arrived and we switched Eric to a PCA pump. This pump allows Eric to give himself a "bump" of medication all by himself. He gets a constant dose - slowly pumping at all times, then he adds more meds as needed. This is great - in theory....

Tuesday night, we removed all of the fentanyl patches and hooked up the PCA pump with fentanyl. The pharmacist decided to be caution with the dose. On the patches, he was getting 200 mcg/hr, but they started the pump at 35 mcg/hr (mcg = micrograms). First, he woke up at 1 am Wed am - upset that he was hooked up to a pump in the first place. By 3 am, he was begging for morphine. We gave him more at 5 am and 7 am.

Wednesday was the first day of radiation for Eric. We made him lie on a table, completely flat while his pain was ever increasing. We kept adding more and more - but he was crying and irritable.

Eventually, we did get thru the radiation and got home. We talked with the nurse and pharmacists and doctors and first increased his PCA dosing to 70 mcg/hr. Then 90 mcg/hr. By Thursday, we were at 170 mcg/hr and it still wasn't helping! He was just so tired and hurting. We were adding morphine, Neurontin, Clonopin and it wasn't helping.

By Friday, we increased his dosing to 270 mcg/hr and it was OK - he was bumping but not a ton and had times of being comfortable. So, in the end, Saturday, we ended up at 300 mcg/hr. We tried 350 mcg/hr for a while, but it was a little too high and was making Eric nauseous.

So, pain in Eric's leg was the big event of the week. Since we were struggling with it so much, we ended up scheduling radiation for 6:45 am every day and Eric was anesthesized for Thursday and Friday - with him sleeping thru the proceedure, he was able to stay still.

Friday, Eric received his first dose of Avastin - the new chemo drug. It didn't seem like it made him nauseous - just a little tired.

This was a horrible week for everyone - we were just all on edge. Mike and I felt so helpless and Eric was hurting. Katy just either hid out on the computer or was angry at us for letting Eric behave badly. He couldn't help it - he was just in so much pain.

I hope we never have to do that again. Below is a note I sent to the docs today - update.


Update 6/27
The first thing is that last night, I noticed another small lump on Eric - it is on his left groin and is about the size of a peppercorn and feels like one too - it is right at the site where he had the biopsy and lymph node removal last June. It is very hard and kind of "pops up" from the skin. Eric hasn't noticed it yet - so it is VERY new. Just thought I should report it.

Today's appt: Mike's going to take Eric today since Katy and I have morning dentist appts. Mike is NOT planning to stop by the clinic today for CBC. He'll just come home after the radiation/recovery. See " Blood at home over the weekend" below as for why. If you DO want him to stop by, contact the surgery center in the Ritchie bldg, recovery - they'll be there until 9 or 10 am while Eric recovers.

Radiation: Radiation went OK once we got the propophol on board. Eric kinda likes going to sleep. Once again, it is scheduled for 6:45 am and he is due to be anesthesized. We'll let Eric decide when he's ready to stop that.

Bowels: We are using the "poop chart" for Eric and the size of Eric's sticker tells us how much he went. As of yesterday, there is NO PROBLEMS - he went like 5 times. Either the Senna/Miralax is working or the radiation is helping to soften the stools, because he went a lot. He also went on Friday and Saturday.

Pain: I think we finally got the PCA pump adjusted pretty well. He's at 300 mcg/hr with 100 mcg bolus of Fentanyl. He hardly every uses the bolus, tho. He even told us that he didn't have pain in his leg at all, really - just a little in his foot. The pain occurs mainly in the morning when he first wakes up and right before bed. However, his foot is really numb. He still can't move his toes much at all. So, I think the pain is being managed quite well for now. I don't want to mess with it unless it gets worse again.

Leg strength: As the week progressed last week, Eric's leg was getting weaker and weaker - by Thurs or so, he was falling quite a bit. Over the weekend, though, he told us it is getting stronger - he's walking unsupported and much faster by last night.

Hospice vs. Karuna: We signed the paperwork to convert us to Hospice. Now Eric can get blood products at home.

Blood at home over the weekend: Due to a lab issue, the type & screen that Kathy S. took on Friday didn't get done until late on Friday and was misplaced or something. So, on Saturday, the blood bank didn't have any type/screen and didn't issue any blood. When Bev, the Karuna nurse, called Dr. Slomiany, he told her to wait and take another CBC and type/screen on Sunday and do an infusion on Monday. So, we SHOULD be set to get packed red cells and platelets at home today - this afternoon.

Urine management: We are continuing to use a foley cathedar at night for urine collection. This is removed during the day, but Eric really is incontinent - he just preferres to use "Pull Ups" and change them frequently.

Supplies: We got a walker and a shower chair last week. Eric's using the walker at times at home and it really helps his mobility.

Meds:
- We started the 200 mg Celebrex 1x/day PO yesterday.
- We administered Methypred IV, 60 mg on Friday, Saturday and Sunday. We are now out of this - should we continue it? Or did we need it to just get by the first few days of radiation?
- Eric is taking Celexa 20 mg PO 1x day and Metadate CD 20 mg 1x/day for attitude. We did NOT give him any Vallium after Thursday. It didn't seem like it was helping much - but that may have been because he was in a lot of pain. Anyway, with the pain down, he doesn't seem to need it or want it.
- At bedtime, he's been getting Benedryl 0.75 ml (37.5 mg) IV 1x/day and Trazadone PO 50 mg 1x/day
- For Bowels, Eric's been getting Miralax - 1 to 2 capfuls/day PO, Benefiber 1-2 tbsp/day, Senna-S PO 1x/day
- Nausea: Eric complained of nausea yesterday, so he got Zofran, 4 mg IV 3x yesterday. It may be due to the radiation or because his bowels were moving so well.
- Other: Neurontin 600 mg 3x/day PO and Clonazapam 0,25 mg 3x/day.
- As of yesterday, he didn't need any additional Fentanyl or Morphine except what he got with the PCA pump.
- Eric did NOT use the TENS unit this weekend.



Later,
Kasey

Tuesday, June 21, 2005 8:17 AM CDT

Hi! This is a reprint from an article called "Chromosomes Switching Places". It describes what happens on a chromosomal level when someone has Alveolar Rhabdomyosarcoma. I thought it was pretty interesting and wanted to get it here in the journal.

There are several other research docs around the country working on this as well as St. Judes.

Chromosomes Switching Places
Children do it. Young practical jokers swap desks—and identities—while their substitute teacher studies a seating chart.

Chromosomes do it, too. Parts of these molecular pranksters can break off and swap places. But the outcome may be much more serious than classroom mischief. When chromosomes relocate and fuse, the results can be cataclysmic.

In a quiet corner of the Danny Thomas Research Center, Gerard Grosveld, PhD, investigates what happens when pieces of chromosomes wander from their assigned places. For years, his research has been affecting the health of people worldwide. For instance, before coming to St. Jude he led an international team of researchers that discovered how the famed “Philadelphia chromosome” is created by the fusion of the c-ABL gene to part of a gene called BCR. This new fusion gene produces a protein that is a critical player in the formation of chronic myeloid leukemia and some cases of acute lymphoblastic leukemia.

The Philadelphia chromosome breakthrough eventually led to development of the anti-cancer drug Gleevec™.

Today, Grosveld chairs the Genetics and Tumor Cell Biology department at St. Jude Children’s Research Hospital, where he continues to delve into the secrets of gene fusion and its role in pediatric cancers, particularly leukemias and a muscle tumor called alveolar rhabdomyosarcoma.

Alveolar rhabdomyosarcoma is a malignant tumor that usually affects muscles in the trunk and limbs. Mutations in a gene called FKHR (pronounced “forkhead”) contribute to this disease. If a piece of the chromosomes containing the PAX3 or PAX7 genes breaks off and attaches to FKHR, a PAX-FKHR fusion gene is formed that gives rise to cancer.

Scientists knew that the FKHR protein causes mature cells to commit suicide, but in 2003 Grosveld and his colleagues discovered another role for this molecule: It helps primitive cells called myoblasts to fuse and develop into muscles. By better understanding FKHR’s normal role, researchers have gained insight into how mutated forms of FKHR cause cancer. But Grosveld also found that expression of the PAX3-FKHR fusion gene is not enough to cause cancer; for that to happen, mutations must also exist in two tumor suppressor pathways. And he learned that the overexpression of certain genes that normally cause cells to proliferate also helps make cancer cells expressing PAX3-FKHR more aggressive.

Grosveld says the discoveries may offer hope to children with the disease.

“We have identified a way that would cure alveolar rhabdomyosarcoma,” he says. FKHR holds the key to wiping out these tumors. Now scientists must figure out how to do just that. The answer may lie in gene therapy or in a procedure that interferes with the breakdown of the protein expressed by FKHR. Grosveld favors the latter method. “We’ve still got a long way to go,” he admits. “But if we make a small molecule that interferes with the breakdown of this particular protein, I’m pretty sure that it will work.”

Members of Grosveld’s department are helping scientists across the institution understand the abnormalities that underlie the diseases treated at St. Jude. The Genetics staff is conducting research on topics ranging from the genetic alterations in cancer and lysosomal storage disorders to the genetic changes that affect our ability to repair mutagenic insults. Researchers in his department also study the genes that are important for the formation of the eyes, the lymphatic system, the liver and the pancreas in mammals.

“The work done in that department is having an incredible impact on our understanding of the mechanisms that go wrong and lead to the diseases we see,” says James Downing, MD, St. Jude scientific director. “This research provides us with a much more detailed understanding so that we can then devise more rational approaches to diagnose, treat or ultimately prevent these diseases.”

Several years ago, Grosveld discovered a new gene that’s involved in acute lymphoblastic leukemia (ALL). Called TEL2, this gene regulates the action of a cell protein called mTOR. That molecule can activate a biochemical pathway that leads to cell proliferation. Grosveld and Peter Houghton, PhD, chair of St. Jude Molecular Pharmacology, are trying to understand how TEL2 regulates mTOR.

Grosveld has also been involved in research on TEL gene rearrangements. He and a team of other scientists discovered that children with ALL who have a specific TEL mutation have a favorable prognosis. That means those children do not need aggressive treatment and thus can avoid the side effects that often accompany cancer treatment.

When it comes to acute myeloid leukemia, Grosveld focuses on two chromosomal translocations—the fusion of the CAN and DEK genes and the fusion of the MN1 and TEL genes. He and his colleagues recently discovered that overexpression of the MN1 gene is important in certain forms of acute myeloid leukemia called core binding factor (CBF) leukemias.

“We’re trying to find out why the cells are overexpressing MN1,” Grosveld explains. “If you find out why they’re doing that, you can interfere with the process, cut out the overexpression of MN1 and the tumors won’t grow any more.”

Downing says Grosveld’s work is having a profound impact on scientific knowledge. “His work on alveolar rhabdomyosarcoma is providing key insights into the genetic alterations that underlie the formation of these tumors; similarly, his work on acute myeloid leukemia is providing critical insights into the combinations of genetic lesions that are involved in establishing leukemia,” Downing observes.

Those genetic pranksters had better watch out. Like substitute teachers who whip around and nab errant chair-swappers, St. Jude scientists are becoming savvy to the antics of certain chromosomes. And they’re using that knowledge to send catastrophic diseases to the back of the class.

Reprinted from spring 2005 Promise magazine

Monday, June 20, 2005 8:27 AM CDT

Hi! It was an absolutely gorgeous weekend this past weekend! One of those you write home about - sunny, low humidity, 70's-80's. Awesome!

We celebrated the awesome weekend by borrowing our friend Tim's car - the convertible Cobra Mustang. We then travelled the back roads thru Wisconsin to Baldwin, WI and purchased a small fortune in fireworks. The drive was good - about an hour - and the firework warehouse was cool to explore. We had Dairy Queen and then headed back via the highway. This was kind of our Father's Day extravaganza.

The trip was pretty good, but Eric's leg was really bothering him by the time we got there - it took lots of morphine to make it. Sitting up like that is really tough. So on the way back, we had him in the backseat with me - kind of lounging/lying. It really helped.

So, Saturday night, we were going to do a huge fireworks display here, but Eric fell asleep early, so we did them last night for a while. We also lit off some smokebombs yesterday afternoon. It was fun! We have enough fireworks to keep us pretty busy for a few weekends, tho!

Other than than, it was a pretty quiet weekend. Eric's been napping a lot lately - his leg pain is getting worse again, so it is taking lots of meds to keep it in check. So, he sleeps. Also, he's starting to really lose control of his right leg. He can't move his toes anymore and he is having a lot of trouble walking. He stumbled several times yesterday - it is kind of scary when he is on the stairs. We keep telling him to use the handrails now, but being the stubborn thing he is, he won't as long as we are watching because we suggested it. I have caught him using the rails when we aren't looking, tho. Stinker!

On Friday, Mike, Eric and I met with Dr. Neglia from the Univ. of Minnesota Cancer Center. He had some suggestions regarding additional chemo, if we'd like to pursue it. What he did suggest, tho, is to definately go ahead with radiation - it should give him some pain relief. Then we can give him a drug called Avastin - it is a monoclonal antibiody that targets a protein on the surface of the cancer cells. Anyway, it is supposedly less harsh, less nauseating, and you only give it once every two weeks. It seems like a good idea for now. This will give us the feeling that we are trying to pursue a cure, even if we are really trying to make Eric's life more comfortable.

I guess Eric and Mike had a conversation about TV in heaven - In Heaven, there would be new TV shows every day - none of these reruns on cartoons. The down side, tho, is that he's afraid he'll be alone. Eric still refuses to talk about dying and death. He put up a fuss last week about seeing Dr. Troy, his psychologist. He told her that they didn't have anything to talk about - because he hadn't been having tantrums lately. However, even though they didn't have anything to talk about, they still talked for about 45 minutes. And afterwards, Eric was in a much better mood and spirits. Enough so that he, Katy and I went to the Science Museum (this was on Wed), and we stayed the whole day. Eric had a blast with all of the experiment stations and he did the Cell Lab 3 times!

Well, I'll keep you all posted as things progress...

Oh - send lots of prayers to Orville and Jason - their cancer progreses also...

-Kasey

Tuesday, June 14, 2005 9:08 AM CDT

Hi! Sorry I didn't get an update done yesterday - it has been a LONG weekend for Eric...

Friday, Eric had home care come out for a blood draw. Well, big surprise, Eric needed Red Cells and Platelets. So, Mike and Eric went to the clinic to get that done. As you know, Eric's been struggling with Constipation. He even threw up a little on Thursday. When the doc heard about that, he decided that it was time to get out the big guns and get him unclogged.

First, an abdominal x-ray showed that Eric was FOS (a highly technical term - Full of S&^!) - and BOY was he FULL! I think he was backed up clear to the stomach - no wonder he was vomiting. We were pretty close; actually, to being so backed up that he would have started vomiting feces within a day or so.

So, they admitted Eric to the hospital and the nurses and Mike told Eric he needed an NG tube (nasal gastric) - a feeding tube. Well, Eric, in theory, thought that was OK - he knew he didn't want to drink any nasty stuff and that the tube would let the nurses put the GoLitely directly into his stomach. Well, lets just say that Theory and Reality, in this case, collided with explosive results. They started putting the tube down Eric's nose and he started getting a bloody nose. Remember, his platelet count was low (like 4,000), so the bloody nose was pretty impressive, I guess. Impressive enough that it freaked Eric out and he started struggling and spitting blood. I wasn't there, but let's just say it was the stuff of nursing legend - I was hearing about it several days later.

Well, eventually, Mike and 5 nurses got the NG tube down and taped into place and they started the GoLitely solution. This stuff is also known as propylene glycol. The body can't absorb it or break it down, so it just pushes thru the gastric/intestinal system and pushed everything else down with it. Eric's had this before - before his first surgery to remove his tumor 2 years ago. Then, it took a few hours of golitely and he was pretty clean. They do this until the stuff coming out is a transparent yellow with no particles - like lemonade. Well, this time, Eric was pretty plugged.

The first night of golitely was rough - he was so backed up that he started throwing the solution back up. They slowed it down a little, so we could keep it down, so that it could work. He started pooping a little, but not very much. It sounds like it was a rough night - very painful for Eric - he wanted to poop, but it just wasn't happening. That night, Mike stayed with Eric in the hospital. Eric developed a little fever, so they started antibiotics. We think it was due to the bowel issues and the fact that his white cell count was nearly zero.

Saturday, Katy and I went down to the hospital and I planned to stay for a night. I assumed that I'd be there a night or so, so I brought a change of clothes for me. Eric's white counts were way low - ANC=2 - and his fever was come and go, so we continued the antibiotics. Well, finally, late afternoon on Saturday, the dam burst. Mike and Katy went home and Eric and I were up until 3 am. Finally, it seemed like we had cleared the block - everything was pretty clear and yellow - a good sign. At that point, Eric was exhausted, so we talked with the nurse and she pulled the NG tube and we went to bed, fairly happy.

Sunday morning, Eric had an abdominal x-ray. We were crushed to find out that Eric STILL was FOS. He had cleared out the bottom part of his intestines, but the top was still full - it was an odd thing to see - since the blockage was underneath his rib cage. Well, we had pulled the NG tube! So, we had two choices - put in another tube or have Eric drink LOTS of Miralax. Eric chose the 2nd and he promised to drink drink drink. In addition, Eric's platelet count was still low, so he got some more platelets transfused.

Once again, Theory and Reality clashed and Eric didn't really keep up the pace on the miralax drinking that the doc wanted to see. So we were giving him until 3 pm to go poop, or else the tube was going back in. Eric was a little hungry at lunch time, so the nurse let him eat a donut. One bite later, he was VERY nauseous and feeling like puking. So, at this point, Eric REQUESTED to have the NG tube put back in. He decided that he didn't want to feel nauseous any more.

By 4 pm, the nurses were ready to put Eric's NG tube back in, and this time they were PREPARED! There were 5 nurses, all garbed in gowns, gloves, masks and face shields. They had the blood spitting before, and weren't taking any chances this time. Well, of course, since it was Eric's idea to put the tube in, there was not a fuss or a muss. Also, his nose didn't bleed, probably because he got platelets earlier in the day. The nurses were impressed and I was very proud of Eric for doing the NG tube without a fuss. I told the nurses that the lack of fuss was because MOM was there instead of DAD....

So, we started the Golitely again. This time, we ran it for about 5 hours and got some good movement again. We put it on hold so that he could get some sleep, but in the end, he had trouble sleeping that night. He finally fell asleep at 3 am on Monday morning, and we started the Golitely back up again at 6 am or so on Monday morning. Unfortunately, Eric spiked another fever. On Monday morning it was 101.7 F.

Monday, it was time for another abdominal x-ray. This time, we were smart and DIDN'T take out the NG tube. The was smart, because the x-ray showed that there was STILL poop in his bowels. So, between the poop and fever, they kept Eric in the hospital for one more night.

So, yesterday we kept the Golitely going all day. We also gave him his pills and some tylenol. We finally got smart about that as well - Eric dislikes taking pills in the best of circumstances, but when he has the NG tube down his throat he HATES it - it is hard to swallow, he says. Anyway, duh! He has an NG tube! We just ordered all his meds as liquids and pushed them thru the tube directly into his stomach! No swallowing - no fuss.

Anyway, in the end, Eric's temp dropped back to normal and stayed there. The Golitely finished doing what it was supposed to do and he finally ended up nice and clear by yesterday evening. At that point, Eric was finally hungry, so we let him eat a bowl of cereal. No nausea to eat, so we knew that everything is working again! We went to bed at a decent time - 11 pm and slept well until this morning.

So, today is Tuesday. We are going home this afternoon. Eric's NG tube is coming out soon and we'll be sad to see it go - it is an easy way to take meds!

Today I talked for a while with an anesthesiologist about more pain meds for Eric. We are going to put him on Klonopin for now and make sure he gets good pain relief.

Right now, Mike and I have a meeting with the docs about the next steps. It looks like the Chemo isn't working anymore. In the last few weeks, Eric's tumors have continued to grow. The one on his right side is now 7cm x 7cm and is invading his gluteus maximous. The tumor on his right side is now 3cm x 3cm or so. It looks like one of the tumors in his lungs is 8mm x 8mm. So there are lots of questions right now.

Well, I'll keep you all posted.

Update: Wednesday, June 15 7:15 am
We spoke with the docs yesterday. After reviewing the CT from last Monday compared with the one from May 19, there are some questions about the actual sizes of the tumors. At this point, however, we know that the tumor on Eric's left side, while larger, is not hurting his left Kidney or ureter. That means no stent at this time.

The right side tumor may or may not be larger - it actually looked a little smaller, but it is so hard to tell. The tumor, however, is growing into the butt muscle.

Both of these things, however, are overshadowed by one thing - the tumors in Eric's lungs are growing now. We did another lung CT just to verify and it is definite. There are several good sized ones - one pretty close to his heart. None of these are large enough right now to cause him any difficulties (breathing or pain), but they do grow very quickly. Dr. Moertel was going to do some reviewing with the radiologist and we'll talk more in a day or so.

We HAD come up with a plan to talk to Dr. Weigel and Dr. Neglia at the U of M regarding looking at some more phase II and/or Phase I trials. We had also decided to review with our radiation oncologist whether we should do radiation on one or two sides of his abdomen. For Pain control, this may still be a good option, but it seems like his pain is pretty much under control using his pain meds and TENS unit. He limps when he walks and he tells me that his foot hurts when he walks, but we've just added the Clonopin, which is supposed to be great for "burning rediculated pain", so that should help (if he stays awake). So radiation may be put on the back burner again.

The one thing that was made very clear, however, is that there is no chance for a cure at this point. There probably hasn't been for a while, actually. I just don't want to give up, though.

However, now we need to look at what is best for Eric for the next unknown length of time. The one thing that Eric has been clear about is that is that chemo sucks! He feels bad from the drugs, they make his counts low and so he feels bad from the low counts. He gets fevers from neutropenia, he has no hair, he has no energy. He HATES chemo. He also dislikes spending so much time in the clinic. We are there every day on some weeks and the off weeks, we are still there at least twice for transfusions. So, I think Eric's opinion is "no more chemo". But, I'm not quite sure he's ready to die. So, I don't know.

Eric has seen the CT scans of his lungs and talked with Dr. Moertel. However, he seemed un-phased by the results. Maybe if it is happening to you, you can detach from it all. In fact, last evening, Eric seemed pretty perky. Well - after he napped. Eric and I got home about 5 pm and he napped until 9:30 pm. I supposed I'd feel perky with a 4 1/2 hour nap, too. He then ate quite a lot - he wanted cheese only, but it didn't take much effort to convince him that some fruit WITH the cheese might be a good idea. I even managed to sneak a little bit of benefiber into the apple juice he was drinking. Amazingly enough, he fell asleep again by 11:45 pm without the use of Benedryl (his usual sleep aide).

Yesterday, Eric seemed interested in going to the zoo - so I think we'll go today, if the weather cooperates. It is pretty cloudy here this morning and kind of rainy. Well, we can always go to the science museum also.

I'll keep everyone posted as to what we decide/do/don't do. However, I think our inclination at this point is to stop all chemos. They aren't working - just hurting at this point. We need to be very specific with Eric, though, and let him decide too. If this is the case, we certainly aren't done with treatment - we want to help Eric be as comfortable/happy as possible right now.

By the way, regarding visitors, you are welcome to come by, but please call first. Eric has expressed interest in seeing people, however, keep in mind, he LOVES certain TV shows and may not talk much if they are on. Also, some of the meds he is on makes him sleepy, so he's been napping at time. You can just come over and watch TV with him, tho. And we may be able to take breaks and build Legos, read, whatever. He may even show you his World of Warcraft Character!

Just ignore the mess in the house. I know you all will! (Heck, you can even pull a few weeds or clean a bathroom while you are here - I won't mind! - really, I won't!)



-Kasey

Wednesday, June 8, 2005 10:32 AM CDT

Hi! WOW! What a serious storm we had last night! There are a ton of folks here in the Twin Cities without power today. We were affected as well, even though we still have our power.

First of all, one of the Maple trees we have in the front yard lost a large branch. This poor tree has just had a rough life. We put it in in 1999 or so, and it was good sized when it was planted, so that kind of stressed it a bit. Then, about 3 years ago, the kids decided that it would be a good tree to climb, so a ton of branches were broken off and ever since then, it has struggled. This year, Mike has been babying it - we talked with a tree specialist and he told us to dig around the base - its own roots were "strangling" it - they were wrapping around the lower trunk, so we dug them out and we've been adding fertilizer. It was probably a lost cause anyway, but somehow the tree seemed to really matter to us - kind of symbolized Eric in a way. It was struggling, looking kind of thin in the foliage, but hanging in there - still putting out leaves. Well, I guess it was pretty fragile, so the winds last night just snapped off the healthiest branch. I guess in this case, the tree is just a tree and not a symbol - we'll probably take it down in the next few days or so and replant. Kind of sad, tho.

Another way the storm affected us: Eric was, in theory, going to go to the Hem/Onc clinic today for chemo. Well, last night, he had a blood draw and his counts were too low for chemo anyway, so we called in this morning to double check that we need not bother to come in. Well, our poor Oncology doc couldn't make it into work this morning - he didn't have any power at home and he couldn't get his garage door open. :) I guess being an Oncologist doesn't make you mechanically inclined - I, personally, would have just pulled whatever lever is attached to the opener to release the door, so that I could open the door manually. But, you know, he might get his hands or nice clothes dirty.... hehehe!

Finally, Katy was due to get her full set of braces this morning - but we got to the orthodontist's office and they were without power this morning! Luckily they have very large windows there - they took Katy's little spacers out and put some bands on her bottom molars, to keep the teeth from crowding together again. Katy's not really too bummed out, actually. She's not looking forward to the full set of braces!

Eric was doing a little better yesterday. He was still very constipated, tho, so he didn't go to school. Yesterday was the last day of school, so he was hoping to get in for a little bit, but just couldn't quite swing it. So, instead, he and I put Legos together in the morning and he watched TV in the late afternoon. His pain was WAY down! That's great! He used his TENS unit for a while, but didn't get any morphine at all. I'm thinking the new fentanyl patches are doing their job. But, like I said, he's strugling with the constipation - so is spending lots of unproductive time in the bathroom.

Eric's counts are pretty low, so it is just as well that he didnt' make it to school:
Hemoglobin: 8.9 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 30,000 (normal is above 150,000; transfuse < 10, 000)
White Blood Cells: 200 (normal is 5,000 - 12,000)
ANC: 30 (Normal is 2500, take precautions <1000)

The low ANC is making him feel kind of nauseous, tho, or maybe it is the constipation or the lack of morphine. Who knows - but luckily Zofran is a good antinausea med! Anyway, we are putting him back on G-CSF and we'll do counts again tomorrow. Tomorrow, he's got an appointment with Dr. Troy, his psychologist.

Oh, we'll start his radiation on June 22 - we expect his counts to be recovered by then and since radiation will affect the counts, we want to make sure his counts are good before starting. It'll go for 2-4 weeks.

Right now, Eric is sleeping. Katy is home - basking in the "No School Glow". Mike is doing work from home. I think I'll log off now and play with Kate...

-Kasey

P.S. I added a few more links in the "Rhabdo Warriors" section above. Jeffrey and Kevin.

Monday, June 6, 2005 8:51 AM CDT

Wow - what a rough week last week was! Eric is fairly miserable, but we may have a handle on some of this, knock on wood.

Chemo went OK - nothing major there. Just 5 days including Saturday - that makes for a long week!

Eric's pain levels were pretty high for most of the week. We finally met with Barb from the pain team and we've done a few things:
1) new Fentanyl patches: the old brand patches were awful! The backing on them was stiff and when Eric wore them, they cut into his skin around the edges. And they were huge - and he needed 3 of them at a time! So his skin was just getting torn up - he looked like a puzzle! The new patches are a higher dose, much smaller and have a softer backing. They seem to stay on better too, so he's getting a better dosage of meds. He's still at 150 mcg/hr, but it seems like it is working much better.

2) Tens Unit: We got a device that is noninvasive - you put these sticky pads on Eric's lower back and it is hooked to a small control box. This sends very light electrical pulses thru the patches that seems to relieve the sciatic nerve pain. There are tons of settings and programs on this little box and we can change the position of the pads to help Eric get the most relief. It really seemed to help!!! He got this on Friday afternoon and he only needed 2 doses of morphine on Saturday and one yesterday. That is WAY down! He doesn't even have to wear it all the time - just for a few hours at a time.

3) Constipation: Eric's been pretty constipated for a the last few weeks - the narcotics (morphine and fentanyl patches) slow down the bowels. We think that was causing some of his pain in his abdomen. Well, Saturday was miserable because we were pumping him full of laxitives and suppositories and things were starting to move, but it was painful for him. Kind of like a plug. Sunday was a little better, but more loose stools. So, that's not fun at all. Hopefully, tho, we can keep it from plugging again, helping him to feel better.

4) Urinary tract pain: Well - the cyclophos was causing some bladder damage and Eric's been retaining urine in his bladder. Also, all of the morphine, etc, has reduced his sensation of feeling full. Finally, it hurt for Eric to pee, so he'd put it off as long as possible. Well, that means that Eric was having LOTS of incontinence issues. He was wetting the bed several times a night and was constantly "dribbling". On Friday, we put in a Foley cathedar and allowed his bladder to totally drain. We left it in for most of Saturday, then took it out for a while. Then we put one in at night for Saturday night and last night. This let Eric get good nights sleep for 3 nights. If he wasn't waking up because he wet the bed, then he wasn't in pain in the middle of the night! So, it is good, but Eric HATES the cathedar! It hurts to go in, it hurts to come out and it tugs while in. But, he's not wetting himself constantly. Today we'll talk with the nurses about a way to manage this a little better.

5) Radiation: We talked with the radiation oncologist and will do some pallative radiation to try to shrink the tumor a bit. We do the setup today and will probalby start as soon as his counts are higher.

6) Blood counts: Eric was feeling awful yesterday - cold, grumpy, tired, pale - so I had a home care nurse come out to the house to take some counts. Turns out his hemoglobin levels are at 6.0 as of yesterday and his white counts are essentially zero. So today Eric'll get blood.

Today is busy: Blood transfusion and radiation setups. We'll be home late. But then we'll be done for the week.

I hope this week is better than last. We tried to salvage the weekend by purchasing some toys, but Eric was too wiped out to play. He didn't even want to finish his Lego kit. He didn't even open another one. He didn't play on the computer at all. Maybe after blood, he'll feel better...

-kasey

Wednesday, June 1, 2005 8:39 AM CDT

Hi! Quick update....

We talked with the doc again yesterday regarding options and pain management. We are NOT going to do surgery - too risky - it is in a bad spot and too much of a chance of spreading. Although pain is an issue, there is no blockages or impaired function, so don't want to do that now.

Instead, we will manage the pain better and start some radiation to hopefully shrink the tumor and provide relief. We meet with the radiation oncologist on Thursday. Hopefully start on Monday.

We have decided to continue the chemo, so this week is 5 days in clinic. He's getting Vinorelbine, Cyclophosphamide and Topotecan. Also Mesna to protect his bladder - due to the cystitis and pain while urinating. The stent does not probably need to be replaced because the cyclophosphamide is what seems to be causing the problems.

Chemo will continue thru Saturday - he'll go to Short Stay unit for that day.

Today I'll meet with Barb from the Pain team to talk about better pain management. In the meantime, we've increased the Fentanyl patches to 150 mcg/hr, the Morphine to 7.5 mg every 4 hours, Fentanyl IV to 50 mcg every 4 hrs as needed, Neurontin PO to 600 mg/ 3x per day. We also have oxycodone 5 mg tabs if he needs it and IV Benedryl 25 mg every 6 hrs to help him sleep.

He's sleeping OK - usually waking once per night for more pain meds.

Well, time to get ready to go to clinic. Katy's home sick again - she threw up last night - she's been getting migrane headaches. I'm glad summer is nearly here. This one, tho, seems pretty legit - Mike also threw up last night. virus? food? We did have Taco Bell for dinner last night - that'll make anyone sick.

-Kasey

Tuesday, May 31, 2005 6:50 AM CDT

Hi everyone!

Last week, Eric was supposed to have chemo - I told you that. However, I forgot to update you all. Eric and I got to the clinic and then found out that his counts were too low - well, his platelet count was too low. So, we bagged chemo for one more week. That means that his last chemo week was 4 weeks ago now.

We kind of expected the week to be pretty good, since he'd have lots of energy. But instead, Eric had a lot of pain in his leg. The tumor in his right side is really bothering him. It is pressing against his sciatic nerve and his bladder, so it pretty much hurts him all the time. Especially when he sits down - his body weight is all pushing on it and he has lots of problems.

Anyway, Tuesday was a bad day - we gave him as much pain meds as we could, so Wednesday, we called in and the doc prescribed Morphine IV. Since then, he's been getting morphine roughly every 4 hours during the day. Luckily, he's doing OK at night - mostly sleeping thru, only waking once or twice. At least he's sleeping.

We did manage to get Eric to school on Thursday, though, for about 2 hours. He was glad to go, but it really wiped him out. Mrs. Werner was great – she made him her “teacher’s assistant” – a job which Eric really took to heart. He did get embarrassed because I was there – I guess I was cramping his style. I thought he was getting kind of upset and wound up, so I was trying to calm him down, but just made it worse, I guess. Well, in the end, the pain in his leg got bad enough to make him want to come home. We gathered all of his school stuff from his desk. I don’t know if he’ll make it back, so I’m glad he had a chance to go.

This weekend was really busy – Mike’s family was visiting us for the long weekend. It wasn’t quite as full of a house as it could have been, tho – a couple of ‘em stayed home. Mike’s Dad wasn’t quite up to the long drive and Britt, the eldest cousin, stayed behind with her mom because it is “graduation season” and there were parties to attend.

So, it was a full house – 6 adults and 7 kids. We pretty much all just hung around here most of the time. Mike and his brothers worked on Ernie and got it working again. Ernie (the orange RV) was having “issues” – so far this year, Ernie has gotten new brakes, a rebuilt carburetor, a new fuel pump and a new manual choke system. I guess an old vehicle will need some repairs – I just didn’t realize all of it would need to be repaired all at the same time!

Well, after it is all said and done, Ernie is working like a breeze (a very big, orange breeze….). Mike and his brothers took the kids out in Ernie and towed the boat. They then took the boat up the Mississippi River. All of the kids except Eric went along and they all had a nice time – it was on Sunday, so some sun was out – enough to get everyone sunburned faces!

While the kids and dads were boating, the women and Eric stayed behind and relaxed. It was kind of a rough weekend for Eric – he was in quite a lot of pain most of the time and his cousins were being, well, kids – kind of noisy and running around a lot. Eric pretty much planted himself in front of the TV for the weekend – he said it was the only way he could get his mind off the pain. I know he’s hurting because he ALWAYS plays with the cousins.

Well, the plan today is to go to the clinic. His is supposed to start chemo again today, but Mike and I are going to have a discussion with the doc regarding ways we can make Eric more comfortable. We need to get that tumor on his right side to be smaller – so it doesn’t hurt so much. Maybe some surgery to debulk it? Maybe some radiation. Each has risks, but I don’t know how he can go on like this. I’m worried about him getting morphine all the time – is he going to be addicted? The tumor, while painful, isn’t life threatening, so he could go on in a lot of pain for a LONG time. I just wish I knew what to do…

Well, talk to ya later….
-Kasey

Monday, May 23, 2005 7:37 AM CDT

Hi! How's it going this morning? We had a pretty nice weekend, all-in-all. Unfortunately, Eric had a rough night - he was up a LOT last night.Not sure why - some pain, some just not tired. Poor Mike is exhausted today. Also, Katy is, once again, not feeling well today - she threw up a couple of times today. Bummer, 'cause there are only 11 more days of school and I hate for her to miss them.

Anyway, scan results - here's the full report. I'll translate below:

Findings:
Thymus: The thymus is seen to contain several septated cysts. Maximal transverse diameter of the thymus measures 14.7 x 16.6 mm.

Lungs: Multiple pulmonary nodules are not significantly changed in size, although there is a right lower lobe nodule that appears slightly more prominent than on previous CT and measures appox. 2 mm on today's CT. There are more pulmonary nodules on the right than the left, which was present on the April CT.

Abdoment and Pelvis: Slight increase in pelvic mass with maximal axial dimensions of 6.0 x 5.4 cm which compares with 5.7 x 4.9 cm on previous CT. Bladder wall thickness has increased from previous CT to 4-5 mm. This involves the entire bladder and not just the posterior margins. Questions the presence of cystitis. No evidence for left renal obstruction.
______________________

What this all means: The thymus is the small gland that produces t-cells, a type of white cells. They are unsure as to why it is slightly larger and why it has cysts. It could be because of the chemo, it is getting damaged. Or it could be because it is actively producing t-cells. No clue - we'll just have to watch it.

Lungs: no real change - this is good. No new growth.

Bladder: The increase in bladder thickness is telling us that Eric's got something going on there - a cystitis. This is either because of the stent (tube from his kidney to bladder) is corroding and irritating the bladder or because of the Cytoxan (Cyclophosphamide) that is irritating his bladder. This really isn't news to us - he has been telling us for a few weeks that it hurts when he pees.

Pelvic tumors - the one on the right is slightly bigger, again. There wasn't really anything mentioned about the one on the left - so I don't know if it is unchanged or if it isn't there. I'll ask today.

So, the plan for this week is to continue with the same chemo he's been on: Vinorelbine, Cyclophosphamide (cytoxan), and Topotecan. At least it is keeping Eric's cancer in check, even if it isn't going away. That means that we'll be in the clinic every day this week. Yawn!

Oh, it is getting kind of late - I need to dash. More later...

-Kasey

Wednesday, May 18, 2005 2:18 AM CDT

Hi! I guess I missed my weekly Monday entry - sorry 'bout that. Anyway, Happy Wednesday!

Last week, as expected, was really busy. Eric's counts were low, so he recieved a transfusion of red cells and platelets last Wednesday.

We were really glad when Friday rolled around - I think the weather is really dragging us all down and we just have been all feeling tired. It has been raining off and on for what seems like weeks now! I guess we saw a little spot of sun on Sunday, which is somehow fitting. So, last weekend, we just did a lot of nothing, really. Mike and I managed to get out a bit on Sunday - running and some much needed shopping.

Monday, Eric and I went into the clinic for chemo - but his counts were too low again! So, instead of chemo, Eric got another transfusion of red cells and platelets. Monday's (5/16) counts:

Hemoglobin: 7.3 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 6,000 (normal is above 150,000; transfuse < 10, 000)
White Blood Cells: 200 (normal is 5,000 - 12,000)

His platelets are the lowest I think I've ever seen. On Saturday, we knew they were low because his gums started bleeding and didn't stop right away.

This was supposed to be week 3 of another round of chemo, but, once again, he's just not able to bounce back, so he's only getting 1 out of every 3 weeks of chemo.

This Thursday (well, tomorrow), Eric's getting another CT scan to check on progress. Last Thursday, we visited the urologist - Eric's been having a lot of pain while urinating lately. For a while, he was have a lot of incontinence, but we now think that is due the end of kind of a chain reaction: He was having pain while urinating, which can be caused by either a urinary tract infection or because he's dehydrated. Since he was on antibiotics and none of the UA tests showed bacterial growth, we assumed he was dehydrated - and he was. So, we put him on IV fluids almost non-stop for several weeks. Well, if you were drinking as much water as Eric was getting, you'd pee the bed too! After we stopped the IV fluids, Eric's incontinence issues seemed to go away.

Unfortunately, the urinary pain has increased - so the urologist changed one of Eric's pain meds. He was taking Oxybutynin chloride, also known as ditropan, for the bladder spasms/urethra pain. Now he's taking a med called Detrol LA. It seems like it is helping quite a lot - not so much pain when peeing.

However, the root cause of the pain appears to be caused by the ureter stent he has in. The stent is the tube that is running in his ureter between his kidney and bladder on his right side. The tumor on that side is large enough that if the stent wasn't there, his kidney wouldn't be able to drain at all. Well, this stent was put in back in October. Because it has been there so long, it looks like the chemo meds might be causing it to corrode slightly - so there are small flakes of corrosion material/crystallized protiens that are getting into Eric's bladder, and down into his urethra. The urethra is the tube that goes from the bladder thru the penis and out. These small crystals are irritating or scratching the urethra, so it hurts to pee.

The Detrol seems to really be helping - along with lots of warm baths. But, the fix is going to be to replace the ureter stents. We are waiting until after Thursday's scans - the doc wants the latest scan results to know how much tumor growth is going to be in the way. Also, we need to know if he needs to have a stent put in on his left since, since the tumor is starting to grow there as well. Anyway, it looks like Eric'll have some one-day surgery coming up soon. All this will be done while he is knocked out - and they probably won't have to do any cutting - it is all done by fishing up a cathedar thru his penis. Which will make him sore afterwards....

Of course, we'll have to wait until Eric's platelet and red cell levels are a bit higher - it'd be too risky right now.

Eric's doing pretty well, overall, though. His energy level is low, but his attitude is good. He's been watching a lot of TV lately. Not so much reading this last week, which I'm bummed about. He's been playing some World of Warcraft with Mike and Katy and I.

Katy's doing OK - she didn't want to go to soccer practice last night - partly because she was behind in her homework - and partly because, well, I don't know why - she's become a homebody - just like the rest of us. She and I did get out on Saturday morning, tho, for the last Youth Advisory Council meeting at Children's Minneapolis. Since it was the last one, they had pizza and talked about what they want to accomplish next year. I think Katy has volunteered to be on the Wishing Well Show - the TV program that airs at the Children's Hospitals on M, W and F's. That should be a fun thing to do this summer!

As always, it looks to be another busy week -
Wednesday (5/18): Bunco at our house! 12 happy women rolling dice!
Thursday (5/19): Scans for Eric, OBGYN appt for Kasey (ick ick ick ick), Party at Pine Tree Apple Orchard in the evening called "Taste of the Tournament", with a band, food and an opportunity to dunk the doctors!
Friday (5/20): Star Wars - of course!!!! And Eric's having his Cub Scout "Crossing Over" Ceremony - where he graduated to Webelos 2.
Saturday (5/21): Mike and Eric are going to go fishing on Lake Superior, if Eric's feeling up to it. We have a friend (Tim) who has a BIG boat on Superior.
Sunday (5/22): rest
Monday (5/23): Eric - visit to Hem/Onc for chemo?, Katy's choir concert in the evening
Tuesday (5/24): Girl Scouts

I'll keep you posted as to progress, results of scan, upcoming surgery, unplanned fevers or hospital visits, etc.

Take care,
Kasey

Monday, May 9, 2005 3:40 PM CDT

Hi! Eric and I are back for the evening. It looks like it is going to be a busy week this week.

The weekend went well - we hade a great time at The Lion King on thursday night! We all dressed up and went to the Old Spaghetti Factory for dinner and then caught the show at the Ordway Theatre. It is a cool old theatre with lots of interesting old woodwork and lights - and the show was FANTASTIC! Eric was glued to his seat the whole evening! I just loved the music, costumes, etc. The only downside was that we didn't get home until nearly 11 pm, so everyone was pretty tired the next day.

Friday night, Eric and Mike went to a Cub Scout camping trip. We've been playing around with Eric's pain meds, though, so between the late night and the extra pain meds, Eric pretty much fell asleep as soon as they set up the tent. I guess he slept very well for about 12 hours. Mike, however, didn't sleep very well - he looked EXHAUSTED on Saturday! The wind was blowing quite a bit, so it was a noisy night for him.

Saturday was pretty mellow - Mike napped and Katy recovered some more from her sick week. On Saturday evening, Eric and I went to my friend, Lisa K's house for dinner. Lisa and John's kids, Brittany and Brianna are sweet, so Eric and the girls had a great time playing. After dinner, Lisa and I went for a walk - yeah! exercise! - then we all went to their church. Well, it was more like a rock concert - it was pretty cool. Eric had a great time with the girls - they saw some skits and played games. It was fun!

Sunday, Mother's Day, I had some fabulous plans for purchasing tons of flowers and doing lots of planting. In the end, however, Katy and I went to a movie and we decided that we are about a week or so early for planting annuals here in MN. I don't want to spend a fortune on flowers just to lose them to frost!

Our deck is finished!! It looks fabulous! The builder we hired did a great job and it is nice to finally have a deck! Sunday, Eric spent a few hours outside swinging in the couch swing we set up on the deck. It is really nice to listen to the birds and feel the wind. I'm just thrilled we got him away from the TV for a little while.

Oh, I almost forgot, we had Sheila Franzen, Eric's 2nd grade teacher, visit us last week. She and Eric had a great time with a science kit that Eric got for Christmas. They looked at stuff under the microscope and "blew up" a volcano - the classic "baking soda and vinegar" recipe. Eric was really glad to see Sheila - he's got a nice bond with her. She brought a couple of books also, and he's really into one of them. Once again, nice to get Eric away from the TV for a while.

The downside to last week and this weekend is that as time goes on, Eric is having more and more incontinence issues - urinary incontenance. He doesn't want the world to know, but it is affecting his mental outlook, so I'm just going to say that it is an issue. Eric has an appointment with a Urologist on Thursday. That is part of this week's busy-ness.

Tomorrow, Eric has an appointment with Dr. Troy, his psychologist - this has been put off several times, so I think he's kind of looking forward to see her.

Wednesday, we made plans to go back to the Hem/Onc clinic and get some blood. Today's counts were pretty low, but not enough to transfuse - but they are still on the way down. So, we are expecting that he'll need platelets and red cells on Wednesday. Today's counts were low enough that they didn't do chemo this week.

We are planning on doing more scans early next week - this is going to tell us if chemo is working...

Well, time to go battle some bandits and monsters! World of Warcraft, here I come!

-Kasey

Wednesday, May 4, 2005 2:56 AM CDT

"How many?"

"How many what?" I asked as I was maneuvering the minivan around the corner, driving past the "Do Not Enter" sign that sits on a corner of the Children's Hospital entryway to the Red Parking Ramp. I never have understood that "Do Not Enter" section - is it really "Do Not Enter, One Way"? That's the way I go every day because it is quicker than driving the extra 20 feet to the corner light and taking the long way to the next driveway. Maybe it is just that the sign somehow got turned around. I'm betting that the sign was turned and that the route I take nearly every day to take Eric to the Hemolotogy/Oncology clinic is actually the correct one.

"How many more treatments do I have?" Eric was pretty firm in his question. "How many more do I have, Mom?"

I sighed. Then I ran over the curb as I turned the corner to driveway into the lot. I gently eased the minivan into the line waiting to get the ticket to enter the lot. "I don't know how many more days we have, Eric. I don't know how mnay more treatments."

The car ahead of me rolled forward and pulled up to the gate. They took their ticket and entered the ramp. I drove forward one car length. "Eric, we'll keep coming for chemo until your cancer is gone, or until we decide to stop."

As I pulled forward to the gate, Eric was facing out the window, looking up at the Garden View building of Children's Hospital. They've planted some flowering trees close to the entrance to the parking ramp. They flowered about a month ago and, in spite of the recent cold snap, they've kept their flowers and have continued in their annual cycle of replacing the petal with leaves. "So I can die?" Eric asked quietly.

I took the ticket offered at the parking ramp gate, and drove ahead, into the cool darkness of the ramp. The cars were parked in neat, crowded rows and I pulled ahead to the first corner. The guy parked on the end spot next to the corner, who is almost always there, hadn't pulled ahead enough. This car is always parked in a way that I'm afraid I'm going to hit him as I go around that corner. I was, once again, amazed that that car was still in one piece, without a ding or a crumpled corner. Or maybe it was only me that was worried about hitting it as I drove by it every day. Once again, I turned the corner and didn't hit the guy, so I continued on up to the next level of the ramp. "Eric, that's a decision we have to make. Right now, we'll keep going. But, if the chemo is more dangerous to you than the cancer is, then we should stop. Ok, honey?"

I drove up to the next level, hoping to find a parking spot near one of the doors. If none of the handicapped spots were available, I'd go all the way to the roof to park so that Eric only has to walk a short distance get inside the building. I looked at Eric thru the rearview mirror. He was looking at the cars we were passing, then he looked up at me and smiled. "Ok mom."


______________________________________________________


Hi! I should give you all an update since Thursday, when we came home from the hospital.

Eric is doing MUCH better this week. No fevers! Yeah! The docs have him on two IV antibiotics to treat his bacterial infection - it turned out to be the same type of infection he had before, as we expected. Gram negative rods - an Enterobacter (its name is Pantoea agglomerans, for those Biology majors out there). This particular type of bacteria is found in the human intestinal tract and is also found on farms - in the "farm dust". Not surprising, really. Eric did develop the hole in his line on the farm. I guess this bacterial is hard to get rid of, so after the antibiotics are done, we'll do the line disinfection and hope that gets rid of it. If he get another fever, though, the line's going to be pulled and replaced. That means surgery.

Anyway, as I said, he's feeling much better. So good, in fact, we went ahead with chemo this week. His counts were good, and we figured hit it while we can. Eric'll continue with IV antibiotics for a couple of weeks, so that should keep any more of the bad stuff away for a while.

This week's chemo is the "week 1" regime - daily chemo for a week. On Monday, he got Vinorelbine and IV Cytoxan. The rest of the week, he'll get IV Cytoxan and Topotecan. His lungs are still clear and his pain levels are a little more under control. Most of the time, he feels no pain. He does have a fentanyl patch on all the time and he takes Neurontin and Ditropan several times a day, however, to keep him pain-free. But, no pain is GREAT!

Eric will have another set of scans in about two weeks. The one thing that is concerning right now is that he's been getting constipated more and more easily lately. We're hoping that it is just due to the meds and not due to the tumors. We'll find out, I guess - just gotta keep on him to EAT VEGGIES! We also help out with Senocot and Colace. He hates Miralax, but may have to resort to it if things don't "start moving" today. Maybe I can sneak it in his orange juice!

Mike actually took Eric to the clinic on Monday. It was a nice break for me! Katy's not feeling all that well this week, so I stayed home with her on Monday. She's had a headache, sore throat and is stuffed up. Yesterday, Tuesday, she went to school, but only lasted a few hours before coming home and going to bed. I'm glad Eric's on antibiotics right now. I'm practicing LOTS of handwashing = I don't want what she's got!!!

Our deck project is coming right along. The builders started work last Friday and they'll be done tomorrow! Yeah! We have a deck! It has only taken us 9 years to get it done. I really like it so far. Unfortunately, it does cut off my view of my backyard from the house. I knew it would, but it didn't really sink in until yesterday when the decking went on. But, it gives me an excuse to actually GO OUTSIDE on occasion, huh?

We unbolted the sliding glass door yesterday and we all walked around on the new deck. Katy make kind of a ceremony of it when she first opened the door. "Mom, did you know that this is the FIRST TIME in my LIFE that I've ever opened this door? Mom, did you know that this is the FIRST TIME in my LIFE that I've ever gone out this door? The FIRST TIME - EVER!" Kind of cute!

Well, back to bed for me. Eric and I have an early appointment tomorrow - 8:30 am. Oh - I almost forgot - we have tickets to "The Lion King" for Thursday night - the musical - on stage. I'm so excited! We'll get lots of pictures!

Later,
Kasey

Thursday, April 28, 2005 5:23 PM CDT

Hi - we are finally home.

Eric's fever was due to a bacterial infection - they think it is in his central line. They aren't sure, but it may be the same infection that put him in the hospital several weeks ago.

Monday night, Eric's temp peaked out at 106.0 F oral. That's really high. He was given Ceftazadime and Tobramycin to combat the infection. He was about 1/2 hour away from being put in ICU - his temp was that high and we were that worried. We put a pulse-oximter on him and his pulse was hanging out at 150 beats/minute. Needless to say, it was a really long night for me.

The next day, Tuesday, Eric was exhausted, but he woke up at 4 am and WOULDN'T go back to sleep. He just wasn't himself and it was pretty scary, actually. He was repeating himself, extremely moody and a few times was almost violent. I was worried that the high fever had caused some damage. At one point, we gave him Ativan and Benedryl IV to MAKE him sleep, but he didn't! Anybody else, it would have knocked on their butt, but Eric just kept fighting us!

Eventually, however he DID sleep - at about 8 pm. He ended up sleeping until 1 pm on Wednesday. Wednesday, he was pretty much back, to his old self. I was SO relieved. The doc kept us inpatient for Wednesday, tho, because they wanted to give him another transfusion of red blood cells and platelets. Also, they wanted to give the lab time to identify the bacteria that was running around in his body. They want to make sure the antibiotics they are giving him are the right ones to do the job.

We did switch his antibiotics to Cipro and Tobromycin - because those are the antibiotics that were most effective against the LAST bacterial infection that Eric had. The assumption is that this infection is the same one as last time.

Eric did get a little bit of a fever (101 F oral) right before getting his blood yesterday, so it was a good call to keep him in the hospital for another night.

Today, however, the doc let us come home. We still don't know for sure what the bug is - just that it is a gram negative rod (types of gram negative rods are e.coli, pseudomonas and pneumonia). The doc also gave Eric one more unit of platelets - just to "top off his tank" for the weekend.

For those keeping score, that makes 3 units of red cells and 4 units of platelets in the last 2 weeks. For those of you people who donate blood - THANK YOU!

Eric'll be on two antibiotics thru the weekend and then we'll go back to the clinic on Monday for a check up. At that point, we'll have the results, so we'll know which antibiotic he'll be on for another 14 days.

Also, starting on Monday, we are going to start a disinfection of his central line using Ethanol. Basically, we'll put very concentrated Ethanol in on of his lines and keep it there for 24 hours, while we give antibiotic thru the other line. Then we'll switch lines. This will continue for 6 days. This is pretty safe if you make sure to pull the Ethanol OUT of the line - don't just push it into his body. Nothing like a little ethanol straight to the heart to give you a nice warm feeling, eh?

If Eric is treated for this full course of antibiotics and he gets a fever again within 2-3 weeks, then we'll end up removing his central line and it'll get replaced.

At this point, Eric has only completed 2 of the 3 weeks of his new chemo. We are already 2 weeks behind for that 3rd week. I'm not sure how this will affect his tumor growth. I guess we'll wait and see. The hard thing is that this chemo - and frankly, ANY chemo - is going to be really hard on his body. His bone marrow is tired and can't make up the red cells, white cells and platelets he needs to fight infections and maintain his body. We need to evaluate if chemo is worth it at this point.

Well, I'm not going to think about that today. I'm going to try to talk with the doc tomorrow about this, tho. We need to go over our options again, I guess. I really want a good plan.

Well, right now Eric's just happy to be home. He's eating applesauce and pigs-in-a-blanket and milk and watching Cartoon Network, which they don't have at the hospital.

Katy has soccer tryouts in 45 minutes. I'd love to go with her to cheer her on, but I'm really tired. A nap sounds good, but I'm not sure I'd wake up in time to go to bed (wait - that sounded odd, didn't it?). Maybe just a hot shower will help...

Oh, yeah, we have a nurse visit this evening at 7:30 pm. I...must...stay...awake...for...nurse....

Talk to ya later.
=Kasey

Monday, April 25, 2005 5:16 PM CDT

not so happy monday after all...

I spoke too soon earlier about Eric feeling well. Today I woke him up and took him to the clinic for chemo. His counts were low, so he probably wasn't going to have it:

Hemoglobin: 9.1
WBC: 600
Platelets: 25,000

not low enough to transfuse, but too low for chemo.

unfortunately, about 1/2 hour after getting the blood taken, Eric developed a high fever - it quickly spiked to 105 or so (measured 104.7 under the arm). He was kind of hallucinating - telling me that he "wants off this ride" and telling me to "turn the boat around!" Poor little punkin was frying his brain!

So, the doc had them hook Eric up to IV fluids and gave him IV antibiotics in the clinic and we then took a ride up to our new digs - the hospital room.

We did get some tylenol down eric around 2 pm, but his temp is still above 103 F orally. He's a little more lucid - he's watching TV and drinking water and eating popcicles.

Mike and Katy just got here to the hospital - Katy says "hi" to everyone.

They took some blood cultures. We'll see what is growing in Eric's body and/or his hickman line. They'll let Eric go home when his fever breaks and his temp goes back to normal - then he'll get IV antibiotics for another 10 days.

Another concerning thing: Eric's pain in his leg is back today. Maybe it is due to the fever, but he's aching.

Well, I'll keep you posted.

-kasey

Monday, April 25, 2005 7:07 AM CDT

Howdy! Gorgeous weekend, wasn't it? Well, at least yesterday was gorgeous! I actually got outside!!!

It really was a pretty unremarkable weekend for us - not too busy, but not empty either. Eric's pain levels are low (1 or 0 on a scale of 1-10), so, in my mind, that makes it a good weekend. I'm just disappointed in myself for not running or doing some other sort of serious exercise.

Friday was my "day off" - I had multiple things planned with friends and really was out for most of the day/evening. Got a pedicure at Century College (they have a school of cosmetology and all of those up and coming pedicurists have to learn SOMEWHERE) - it was only $6 due to a 1/2 price special. It wasn't as nice as going to a "real salon", but anytime you get a foot massage, it is all good.

Then, after the pedicure, we went out for lunch at Ingredients - a restaurant in White Bear Lake. They've got an awesome artichoke dip! After lunch, it was home for a nap (I needed it after my glass 'o wine at lunch), and then out again for dinner. This time, we went to Ursula's Wine Bar in White Bear Lake. They've got about a zillion types of wine but only about 10 tables in this teeny restaurant. The food, tho - awesome! Especially the warm chocolate cake/brownie with ice cream and raspberry sauce! YUM!!!! Of course, I can't get out without embarrassing myself. As I was putting on my coat, my hand knocked one of the paintings off the wall. Luckily, it was just on a canvas - not in a frame with glass, so no breakage. The entire place, however, did get perfectly quiet and look at me while I aplogized profusely and fled.

Saturday was spent, for me, pretty much worrying about and/or experiencing the Junior Girl Scout event. It was from 4 to 6:30 pm, but I woke up at 8 am worrying about it. Did I have everything I needed? Was it going to work out? Was the swim team going to show? Was the pizza going to get there on time? ARGH! In the end, it was great! We had about 60 girls and about 25 moms at the Stillwater Junior High. Carolyn, one of the moms, is a synchronized swim coach in Stillwater, so she arranged to have the U of M Synchronized Swim team do a workshop! They did their routines to demonstrate, and then we broke the girls into smaller groups where they taught them about 6 synchro moves. In the end, each "team" prepared and performed their own routines! It was so COOOOL! Then, we had Dominos bring pizzas. We were going to get 20 medium pizzas, but in the end, we got 22 large pizzas. Good thing we did - the SWARM came and it was all gone in 15 minutes or so! Man, who says girls don't eat!!!!

After that, Katy and I were pretty tired. Katy had a friend spend the night (Charlotte), and they crashed about 10 pm. Mike and I, however, stayed up until 1 am or so playing, of course, World of Warcraft. I've got a friend, Doug, that I know from my youth (RSI, actually - a summer program we were in one year), and he's also playing WOW, so he was online with us. He's living in San Francisco for the moment, so it was pretty cool to get caught up via the game. Of course, it's not like we could have a massive conversation while we were busy killing Kobolds and collecting their ears, but hey, its always nice to just spend time with friends, huh?

Sunday, yesterday, was pretty mellow again. I didn't get dressed until about 3 pm. It was great! Sometimes there are days when lounging in your jammies all day is a good time. Eventually, however, guilt kicked in (darn those Catholics anyway) and I did get dressed and go outside. It was sunny and in the 50's, so I did a little yard work. I cleaned up some of the front planters and worked and weeded for about an hour - or a little more. Then, Katy and our next door neighbor, Jackie, and I rode our bikes to Dairy Queen. Had to reward my hard work with a little treat, huh?

Earlier in the day, before Charlotte left, Katy and Charlotte embarked upon a new art project - paper machier (machay, mashay - how do you spell that? Darn French spellings!!! Even spell check is having problems) You know, dip strips of newspaper into a gluey stuff and wrap it around a frame. Makes a HUGE mess! Good thing our basement is unfinished. They are making a dragon. It is about 3 1/2 feet long with the tail. We haven't even thought about the wings span yet! Should be cool, tho. It'll take a while to finish - so it is currently drying in the basement.

As I said, Eric is doing well this week. He's recovered from his chemo pretty well and is looking better. We made him drink lots of water over the weekend, so no dehydration. His pain level is tolerable, tho right before bed last night, he was getting the "weirdness" in his right buttocks/leg again. That was the start of the pain last time, so I'm hoping it is just that his pain patch is wearing off and needs to be replaced.

Today is more chemo in the clinic. Tomorrow I have an eye doctor appointment and Katy has soccer tryouts. Wednesday I'm going out with some friends (again!!!). Other than that, things are pretty quiet this week. Quiet is good. More time for WOW! (OK, we're all hooked!)

take care,
Kasey

Thursday, April 21, 2005 3:01 PM CDT

Happy Thursday!

Today we went in to the clinic for a CT Scan and the results weren't too bad, really. There is no change in his lungs - same six or so small spots. In the pelvis, the tumors measure the same size, but the radiologist thinks they are a little "plumper" or more rounded. But, essentially, there is very little change in his tumors. This is good, if you ask me - it has been 3 weeks since the last scan and they aren't growing out of control and there is no spreading. That means that the chemo is at least keeping the cancer in check.

Unfortunately, the chemo is really doing a number on Eric's bone marrow - it is really tired and is having a hard time keeping up. Today's blood counts were:

Hemoglobin: 6.0 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 19,000 (normal is above 150,000; transfuse < 10, 000)
White Blood Cells: 100 (normal is 5,000 - 12,000)
ANC: 15 (Normal is 2500, take precautions <1000)

So, Eric got some more red blood cells today. When you add that to the 1 unit of red cells from last Wed, the 1 unit of Platelets last Wed and the 1 unit of Platelet on Monday, that's, um..... a lot of blood. Anyway, he didn't get chemo this week, so he's already a week behind the ball. And these weeks without chemo kind of scare the heck out of me.

Today was kind of fun in another way, tho. Today the management team from the Minnesota Wild (our NHL hockey team) visited the clinic! Eric kept telling me he was "shy", but when the guys (Jacques Lamaire - Head Coach, Mario Tremblay - Asst. Coach, Mike Ramsey - Asst Coach, Mike Greenlay - MN Wild TV, and Matt McConnell - MN Wild TV) showed up in Eric's room, he did a FABULOUS job of putting aside the Game Boy and having a nice conversation! Eric asked Jacques if he had a nice "vacation"! Hee hee! I was very impressed with Eric. They also chatted about the MN Swarm game last Friday night (Lacross) and Eric told them about getting Brett Hull's hockey stick - Jacques asked if we measured it to make sure it was legal! It was such a good visit and I told Eric how proud I was of him. Eric now has several autographed photos and we've got a pic of him and the guys.

The rest of the week should be kind of busy: Katy has soccer practice tonight, tomorrow I'm going out with "the girls" (getting a pedicure, lunch and dinner later), Saturday is the "Junior Girl Scout Get Together" with the U of M Synchronized Swim team (our troop planned it). That leaves me with Sunday - I might go to IKEA with my neighbor - or we may go to the Hem/Onc family carnival - tho with Eric's counts so low, I'm not sure we'll go. (Today we're skipping Eric's Cub Scout Pack Meeting because of the low counts). Not sure yet. Then, Monday we've got more chemo if Eric's counts are high enough.

So, the next scan will be in 3 weeks or so - keep sending those good healing vibes and prayers!

-Kasey

Monday, April 18, 2005 1:55 AM CDT

Good morning! I have found that I no longer have access to my computer - we have a family of "World of Warcraft" junkies! Since we have two accounts and we have two computers that run the game, it seems like most of the time, there are two people on the computers at all times! Actually, I don't really mind that much. Mike has really taken to the game and it is a way for him to "bond" with Katy and Eric.

You see, we've got the two computers set up in "the den" (aka the formal dining room). Now Mike plays one game with Eric and one with Katy. They can talk about the virtual places they are going, the virtual money they are making and the virtual things they are accomplishing. However, the interaction between father and child isn't virtual. It is kind of sweet, really.

I think Eric has really taken a liking to the game because while he is playing, he's this really strong, active character - an elf. He can hunt, fish, run for hours. He is tall and strong. He's outdoors all the time. So, even if he can't seem to do those things "in real life", he's doing them in the virtual world.

Mike's been doing an awesome job this week of getting Eric outside in the gorgeous weather - oh this is in realy life now. He's conviced (bribed?) Eric to take a walk around the block nearly every day (except for Saturday - it rained here nearly all day). Yesterday, Mike set up an "Eric trap" also. Eric had a friend, Jacob, over to play for a few hours. While Eric was giving Jacob a tour of the house, Mike set out the remote controlled boat and the fully-charged batteries. Of course, when Eric and Jacob saw it sitting there, they couldn't resist - they just HAD to take it outside and run it in the pond. Next thing you know, Eric and Jacob were outside! Yeah! The Eric trap worked! Mike got Eric outside and Eric thought it was his own idea. sneaky!

It was nice to see Eric playing with a friend again. Jacob has been a real trooper. He called us and called us and called us to try to get together. Each time, Eric was either sleeping or not feeling well. I'm so glad it finally worked out. Eric lasted for about 2 1/2 hours before he started to fade, so it was a good long time for him. Thanks, Jacob, for coming over!

As for Eric's health, well, this week wasn't great. He had chemo again on Monday - this week he got oral Cyclophosphamide every day at home (Just one more pill to take) and he got Vinorelbine in the clinic. By Wednesday, however, Eric's counts were really low:

Hemoglobin: 6.0 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 10,000 (normal is above 150,000; transfuse < 10, 000)
White Blood Cells: 200 (normal is 5,000 - 12,000)
ANC: 65 (Normal is 2500, take precautions <1000)

So, on Wednesday, Eric got a transfusion of Red Blood Cells and Platelets. To be honest, after the transfusion, I think he still looked pale and awful. I'm betting that he really should have had more Red Blood cells, but one one per customer, I'm afraid.

At any rate, on Thursday, he still wasn't looking all that hot and Friday he was pretty exhausted all day. But, although he was exhausted, he wouldn't nap at first. Instead, he was just kind of cranky - then he did end up napping and felt much better when he woke up. Saturday, however, he really slept in! Eric got up early on Saturday morning, took a bath because he was feeling some pain in his bladder, then went back to bed and slept until 2:30 PM!!! I guess he really needed the sleep!

The pain in Eric's leg has lessened. I'm not sure if it is because of the pain meds he is getting (the fentenyl patch, the oxycodone, the neurontin, the ativan) or if it is because his tumor is shrinking. So, that pain is less, but Eric has been complaining of nausea (to be expected) and pain in his bladder. I think he had a urinary tract infection now. I'll tell them about it tomorrow when we go back to the clinic tomorrow.

I'm kind of a wreck, physically. I really need a haircut, I've decided. I really need to work out more, I've also decided. Mike and I were running last weekend, but this weekend was kind of a failure, excercise-wise. At least I did get out for a long walk with Lisa B and Angie. I know I'm a mess because my face is a total disaster! I NEVER had acne when I was a teen (well, almost never), but now I look like - well, you know. ICK!!! I'm blaming it on the long hair. I'm also blaming my jeans not fitting on the dryer. However, the fact remains that 1) I've got zits and 2) my jeans don't fit and the one thing that will change both of those facts is that I need to run more.

This last week, Mike and I had a long meeting on Tuesday with "the team". This is the group of folks we work with at Children's. Not all of them, but quite a few: Dr. Slomiany, Kathy (our primary nurse), Dr. Troy (psychologist), Peter (home care chaplain), Donna (home care case manager and pain team), Sarah and Kirsten (child life), and Cindy (home care social worker). We talked mainly to get everyone "on the same page" about Eric's condition, to talk about how we are proceeded with pain meds, how we will continue to coordinate with psych, child life, etc. It was nice to get everyone together, but there really wasn't anything terribly new or earth shattering that came out of the meeting. I think we will try to work in some more child life visits at home for Katy. I'll continue to take Eric in for psych visits and Peter will continue to visit regularly. We also discussed pain treatment and decided that we'll get some more meds here at home for "just in case". Just so that we avoid having Eric in pain for days while we are waiting for our next office visit.

I'm still thinking really hard about the "cost / benefit" ratios of treatments. Dr. Slomiany told us that we could do some "palliative radiation treatment". This means that we would work with the radiation oncologist to do radiation on the tumor that is affecting his sciatic nerve. It might provide some pain relief to Eric. However, it would mean exceeding his maximum for radiation to his pelvis and will probably cause bone damages and damage to his GI tract, in addition to the burning/peeling of his skin, like he had before. I think both Mike and I agree that at this point, it isn't really worth it. In this case, there is no guarantee that he'll feel better adn the pain patches seem to be keeping it under control, but there is a guarantee of further damage and pain from the radiation - not a good trade in our minds.

Of course, that leads us to the next question of the "cost/benefit ratio" of the current chemo that Eric's on. He is definately feeling sick from it. He doesn't throw up, but he has a background nausea from it. He had no energy and is susceptible to all sorts of stuff because of his lowered immune system. He just doesn't feel well. Is it worth it?? The docs don't think he'll recover. This is not a cure. Just a way to slow the progress of the disease.

Well, we've got more scans on this Thursday. We'll know if the tumors are continuing to grow. If so, then I think it is a no brainer - we stop. If not, then it is tougher. I think we need to listen to Eric. Last summer, he told us he didn't want to do any more chemo. I didn't let him. It may be time to ask him how he feels about it again. I know he doesn't want to disappoint me, or scare me, but I know he's miserable from the chemo.

I just wish I knew the right thing to do. Why does this have to be so hard? You know, there are all sorts of tools and techniques out there to help with decision making - that's what the whole "Six Sigma" thing that 3M has is about - a way to make decisions in an informed manner. However, when it comes right down to the really tough ones, none of that stuff is worth a damn. It comes down to what feels right. How do you put numbers on pain? How do you decide to stop treatment - the only hope for cure - in exchange for feeling better for an unknown period of time. How do you decide that treatment is futile and will only make your son's last few months less bearable? How?

I find myself looking for guidance - signs.

RIght now there is a hum-dinger of a thunderstorm. It is a sign of some sort, tho I don't know what it means except that I gotta close some windows right now!!!


8:30 am: UPDATE
OK - that was getting kind of, well, introspective. Went back to bed and am now feeling a bit better.

I forgot to mention: We have MICE! EEEK! Actually, we purchased mice and they are in a cage. Yes, we decided to foray into the exciting world of rodent-keeping yet again. Katy and I were out and about last weekend and one of the places we went was the pet store (why, you ask, were we in a pet store? Because I don't learn). While there, the owner's daughter was sorting the mice and we got to talking with her. Some of the mice become snake food, so we decide to do a rescue operation and purchase 4 of them They are so cute! And they are MUCH more friendly than hamsters. We did purchase a new heavy-duty cage for the mice, so that we don't get any escapees. We have all females and they are named Midnight (black one), Moo (black and white one), Misty (gray one) and Caramel (light brown one). Even Eric likes to hold the mice! The only thing about them that is a negative is that they kind of smell like wet dog. But, since we already have a dog, it just adds to the wet dog smell we've already got going here at home.

Also, I forgot to tell you that on Friday, after napping, we did manage to get out for a little fun. We had tickets to the last MN Swarm game. They are professional Lacross team. Lacrosse is a lot like hockey - but without the ice. There is a lot more scoring than with hockey also, which makes the game a little more fun to watch, if you ask me. They even have fights on the field, just like hockey! It's great! (for all those kids reading, fighting is NOT great - it is a bad bad bad thing, except in professional hockey and lacrosse where it is perfectly acceptable and is expected behavior).

Katy right now is on her way to Fort Snelling for a field trip. Mike volunteered to chaperone, but in the end, they had too many chaperones and he didn't get picked. Katy's gonna just melt today. For some odd reason, our weather is just bizzare and today it is forecasted to be 80F today! In April in MN it has snowed before - what is this 80 degree stuff? That's warmer than it was practically all last summer! Weird weather. Well, I hope she's OK today.

Then, this afternoon, Katy goes to the orthodontist. She's had that expander in her mouth a long time now and she's really hoping that she can get it out today. Of course, that may mean she comes home with braces. I guess we'll find out today!

It is 9 am now. We have to be at the clinic at 11 am. I have time for a quick run. I think I'm gonna make good on my earlier comment and do just that.

-kasey

Monday, April 11, 2005 4:03 AM CDT

Hi! Well, it has been a whole week since I updated - and I kept meaning to get online and update, but I just never did. There is usually someone on my computer at any given time, so finding computer time has been a little more of a challenge. Turns out, the whole family is loving the online game: World of Warcraft. The title is a bit fierce, but it really is kind of fun. It is very reminiscent of the whole "Dungeons and Dragons" thing of my youth (yeah, I admit it, I was a total geek and played D&D - usually with my brother).

Anyway...

This week has been kind of up and down for Eric, but by the end of the week, it has been pretty good. We have settled in on a chemo that seems to be treating him pretty well. He's not getting sick at all, and we can do it outpatient. We were at the clinic every day last week, but that is MUCH better than being inpatient. This week we will be in the clinic on Monday (today) and that's it. Next week is Monday only also, then back to every day the week after. Here is what he's getting:

Week 1 (Last week):
Day 1: Vinorelbine IV, Topotecan IV, Cytoxan IV
Day 2: Topotecan IV, Cytoxan IV
Day 3: Topotecan IV, Cytoxan IV
Day 4: Topotecan IV, Cytoxan IV
Day 5: Topotecan IV, Cytoxan IV
Starting Day 6, Eric switched his Cytoxan from IV to PO (oral). This is actually a low dose of a med he has had before, Cyclophosphamide. So, it is just a pill that he's taking.

Week 2 (this week):
Day 1 (today): Vinorelbine IV. Continue on Oral Cytoxan every day.

Week 3 (next week))
Day 1: Vinorelbine IV. Continue on Oral Cytoxan every day.

Then repeat the above 3 week schedule one more time. If his counts are low, however, we'll wait a week between cycles. After that, we'll do another set of scans.

The pain in Eric's right leg continued to grow during the week last week. Monday night he didn't sleep well - Tuesday we bumped his Neurontin level so that he was getting 1200 mg total, so he slept better that night. Wednesday, however, it was bad again and he needed 1800 mg of Neurontin. Plus he needed 10 mg of Oxycodone and 1 mg Ativan and he finally fell asleep around 2 am. Awful! Thurday, he slept fitfully - we gave him sleep pills before bed and that kind of helped, but it wasn't a restful sleep and he was exhausted on Friday.

On Friday, our doc gave us a prescription for a new painkiller - Fentanyl. It is a patch that he wears for 3 days. It is GREAT! On Friday night, Eric declared that his leg didn't hurt at ALL! He slept well all weekend!

Eric was feeling well enough that on Saturday, he and Mike went on a Cub Scout hike at Tamarack Nature Center! They didn't make it the entire way, but were still outside for more than an hour! That is really good!

We had a nice time on Saturday night as well. We grilled out with our neighbor, Angie. Her son, Alex, came over and we introduced him to our new game - now he's hooked as well!! Then Mike and Eric started a campfire in our firepit out in the backyard. It was a gorgeous night!

I also spent some time this weekend redecorating our "formal dining room". We, of course, don't use the formal dining room as a dining room - we have desks, computers and a bookshelf in there. We also have our old couch from the family room in there. It is kind of snug, but now is kind of cozy. When Mike or Katy played computer games during the day, they'd hang blankets over the window and shades to make it really dark and reduce the glare on the computer screen. I got kind of sick of the "blanket chic look", so I purchased some curtains from Target (gotta love Target!) and some pictures. Now we have a cute little living room/den! The room was already painted, so I didn't have to do that - thank goodness! Anyway, our house is finally starting to really look "complete" now. It has only been 9 years since we've moved here, so it is time.

Well, I'd better go back to bed for a few hours. I'm kind of tired. I'm SO Thankful that Eric is feeling better. I really hope it lasts for a while. I'm also hoping that part of that is because the chemo is shrinking the tumors a bit.

here's to hoping...

-Kasey

Monday, April 4, 2005 7:02 AM CDT

Good Morning - Happy Monday and all that.

I'm so sorry for the lack of updating, but life has been SOOO busy. As we have doctors appointments this morning, I'll try to keep it short and sweet and to the point, but I may ramble a bit.

The short version is:
- Uncle Jason's visit was a success with lots of on-line fun had by all (including Mike who learned how to play a new 1/2 Life Game online) (This was from March 20-25th)

- During same week, however, Eric's leg (sciatic nerves) were really bothering him and he was having trouble sleeping at night - thus leading to increasing crankiness and moodiness. A cold didn't help matters.

- We went to "THE FARM" on Friday, March 25, which was also a successful trip.

- Easter egg hunt was a raging success. Turns out the Easter bunnies (there were three this year) hid 95 candy-filled eggs and individual bags for the 8 kids in a very large field with a stream and woods. Hunting activities took more than 1 1/2 hours and there is still a ton of candy left sitting around (whoa is me.)

- Eric and Grandpa Ruegegger are looking/acting more and more like each other: stooped walk, not sleeping well, snuffly nose, sore backs, crabby and addicted to TV. Eric's night were even worse this week - lots of leg and back pain.

- Ernie (our orange RV, for the uninitiated) was successfully retreived and is once again a beacon in our driveway in Mahtomedi. He also got new headlights and new front end brakes. I'd like to claim that I helped, but my participation ended after the trip to Napa Auto Parts.

- Eric got a hole in his central line (hickman) that we use to give him IV meds on Easter night. It was a small one that was slowly dripping blood. We clamped it and called Children's -St. Paul.

- Monday, 28 March, Mike, Gramma, Katy and I (and Eric, of course) all trucked up to Univ. of Wisconsin - Madison hospital, ER to get Eric's line fixed. We waited for about 3 hours, then they finally decided that they didn't have the spare parts anywhere in Madison to fix it. They offered to order them, but we checked with our docs and decided to just keep it clamped and wait until we got home.

- Came home on Wednesday, 30 March - no major incidents. Stopped at Dairy Queen - I've decided I REALLY like the Carmel Moo Lattes. Which is bad - they have about a zillion calories and I weigh more than I've ever weighed in my life (except for pregnancy). Well, I'll run more later.

- Went to Children's - St. Paul on Thursday, 31 March for a pre-scheduled CT and to get Eric's line fixed.

- About 30 minutes after the CT, Eric suddenly didn't feel good - he got violent chills, hot flashes and his temp went from normal to 105.2F At that point, the doctor ordered IV antibiotics and he was admitted to the hospital. His line was still not yet fixed, so they put a new IV into his arm for fluids and antibiotics.

- Eric's fever continued until around 7 pm that night. - then it dropped and stayed down. However, he stayed in the hospital on both Thursday and Friday nights - to get IV antibiotics and to make sure he stayed hydrated. They also kept taking blood cultures. At this point they weren't sure what had caused the fever - it seemed like an infection, but it was also right after his CT, so it might have been a reaction to the contrast solution they give during the CT.

- Also, regarding fixing Eric's central line, turns out ONLY Dr. Moertel fixes these things in the entire hospital! No one else. And Dr. Moertel was on vacation! Eric was scheduled for surgery on Friday to have the entire line removed and replaced. Debates were raging amongst the docs on whether it should be fixed or replaced. In the end, Dr. Slomiany called Dr. Moertel and home and he came in to the hospital and fixed Eric's line on Friday afternoon. That was awesome of him!

- We got the results of the CT scan on Thursday. Not good results: the tumor on Eric's right side pelvis has grown and is now 5.4 x 4 cm and is wrapping around Eric's ureter and sciatic nerve. That explains the leg pain. The tumor in the left side of the pelvis is back and is also starting to wrap around a sciatic nerve. It is only a matter of time until that one causes pain as well. There are now 6 small nodules growing in Eric's lungs as well. All this means is that the chemo didn't work and we need to swich chemos again. We are rapidly running out of options here.

- After the line repair, they cultured the ends on Saturday morning, everything still looked good - no fevers, no infections, etc, so they let us go home on Saturday morning.

- Saturday morning was the Pine Wood Derby (Cub Scouts) District race. We got there just in time for Eric's race. His car did pretty well - got 6th out of a pack of 30 or so. He was fine with that.

- Saturday was spent soaking up the awesome sunshine and warmth - in the 60's sunny - awesome!

- Saturday afternoon, we got a call from Children's St. Paul - turns out one of the blood cultures was growing a bacteria - gram negative rods. This is potentially very bad, so they wanted us back in the hospital ASAP!!! ARGH!! The upside is that the fever was probably NOT caused by an allergic reaction to CT contrast. That's good, since he'll get more CT's.

- Mike and Eric rushed back into the hospital (so much for our plans to grill out, eh) where Eric got MORE IV antibiotics (Ceftazadime and Tobramycin). In the end, we talked them into letting him come home on Saturday night, tho. We are still giving him IV antibiotics every 8 hours here at home.

- Yesterday (Sunday, April 2) was pretty good. No hospital visits, tho we did get a nurse to visit us to take cultures. Eric felt good - no fevers. We have some new pain meds: Neurontin is used specifically for neurological pain - like the sciatic leg pains he is getting. We also got some more Ativan and Oxycodone. If we need to, we can get some of the more "big guns", but this works for now. It was sunny and warm again - we hung up the hammock in the backyard and Eric sat out there and read a lot of the day. Katy and I rode bikes, Mike ran, we grilled for dinner. Nice!

- Last night, Eric's leg pain was bad again. He was up until after 1 am.

- Today, Eric and I are going to the clinic to start a new chemo. He will be getting Vinorelbine once per week, Topotecan once every 3 weeks and oral Cyclophosphamide every day. These chemos can all be done in the clinic, so no hospital stays. They also said that these chemos aren't as myelosuppresive (sp?), so his bone marrow and hair won't be as affected. He may even grow back his hair! We will do this for 2 rounds (about 6 weeks) and see where we stand again. At this point, tho, things really don't look good. The hard part, for me, is knowing that this is starting to really cause Eric a lot of pain. The days aren't too bad, but the nights are hard. Then he doesn't sleep well and is crabby the next day. I really hope we can do something so that he isn't in so much pain at night.

Well, I'm running late. This was very sad news for us and I can't quite get my arms around it all. I'm emotional, but don't have time to really get into it all right now. Anyway, if you have good wishes, prayers, good vibes, etc, keep sending them Eric's way. And Katy's as well. She is standing one the sidelines watching and is feeling, well, something. Sad yet angry at Eric and us. Hard to say. She is trying, tho, is is often a big help. I want things to go well for her as well. (Today is the start of 4th quarter - she starts Art today and is kind of excited).

Looking back, my "short version" is pretty long and I think I'll just skip the "long version". I'll keep you posted.

Well, talk to ya later.
-Kasey







Article from Scientific American:

(this is really good! You should read this!)
(Scientific American's April 2005 Editorial)

Okay, We Give Up

There's no easy way to admit this. For years, helpful letter writers told us to stick to science. They pointed out that science and politics don't mix. They said we should be more balanced in our presentation of such issues as creationism, missile defense and global warming. We resisted their advice and pretended not to be stung by the accusations that the magazine should be renamed Unscientific American, or Scientific Unamerican, or even Unscientific Unamerican. But spring is in the air, and all of nature is turning over a new leaf, so there's no better time to
say: you were right, and we were wrong.

In retrospect, this magazine's coverage of so-called evolution has been hideously one-sided. For decades, we published articles in every issue that endorsed the ideas of Charles Darwin and his cronies. True, the theory of common descent through natural selection has been called the unifying concept for all of biology and one of the greatest scientific ideas of all time, but that was no excuse to be fanatics about it.

Where were the answering articles presenting the powerful case for scientific creationism? Why were we so unwilling to suggest that dinosaurs lived 6,000 years ago or that a cataclysmic flood carved the Grand Canyon?
Blame the scientists. They dazzled us with their fancy fossils, their radiocarbon dating and their tens of thousands of peer-reviewed journal articles. As editors, we had no business being persuaded by mountains of evidence.

Moreover, we shamefully mistreated the Intelligent Design (ID) theorists by lumping them in with creationists. Creationists believe that God designed all life, and that's a somewhat religious idea. But ID theorists think that at unspecified times some unnamed superpowerful entity designed life, or maybe just some species, or maybe just some of the stuff in cells. That's what makes ID a superior scientific theory: it doesn't get bogged down in details.

Good journalism values balance above all else. We owe it to our readers to present everybody's ideas equally and not to ignore or discredit theories simply because they lack scientifically credible arguments or facts. Nor should we succumb to the easy mistake of thinking that scientists understand their fields better than, say, U.S. senators or best-selling novelists do. Indeed, if politicians or special-interest groups say things that seem untrue or misleading, our duty as journalists is to quote them without comment or contradiction. To do otherwise would be elitist and therefore wrong. In that spirit, we will end the practice of expressing our own views in this space: an editorial page is no place for opinions.

Get ready for a new Scientific American. No more discussions of how science should inform policy. If the government commits blindly to building an anti-ICBM defense system that can't work as promised, that will waste tens of billions of taxpayers' dollars and imperil national security, you won't hear about it from us. If studies suggest that the administration's antipollution measures would actually increase the dangerous particulates that people breathe during the next two decades, that's not our concern. No more discussions of how policies affect science eitherso what if the budget for the National Science Foundation is slashed? This magazine will be dedicated purely to science, fair and balanced science, and not just the science that scientists say is science.
And it will start on April Fools' Day.

Okay, We Give Up

MATT COLLINS
THE EDITORS
COPYRIGHT 2005 SCIENTIFIC AMERICAN, INC.

Monday, March 21, 2005 5:54 AM CST

Good Monday!

Well, we all survived the week with Mike in China (again) - for whatever reason, it seemed really long!


Regarding Eric's health, well, as expected, it was pretty poor last week. Last week was days 7-13 out from his last chemo - and that is typically the time when his blood counts are low.

Monday, really, wasn't too bad. However, by Monday evening, Eric was starting to complain of a sore throat. We had Barb, the energy therapist, visit on Monday evening. We put on some soothing music and Eric relaxed while she tried some things to help Eric feel better - at the very least, it gave him time to lie still and relax. Kind of massage-y.

Tuesday was another Girl Scout meeting. I've been feelign really quite panic-y lately - our troop is working on their Bronze Award, and we've been doing well on the service project part of the award, but there are some other things that need to be finished (ideally first!). So, I finally got organized and made a checklist for all of the girls - it spells out exactly what needs to be finished! I'm so happy about it. I also split up the remainder of the meetings and events and assigned a girl to each one of them - now I have assistance! This gives each girl a chance to be a leader and I have help! Yeah me!

On Tuesday, Eric's fever was down, but on Wednesday, Eric had a low-grade fever again. We had Cindy, the Karuna care (home care) Social Worker, visit with Eric for an hour or so. She did another assessment of Eric's mental state - to make sure that the Home Care program is taking care of all of our needs here. While Eric met with Cindy, I met with Peter, the chaplain with Home Care. It was a good conversation - tho I did get weepy in the middle of it. We were discussing choices we may need to make in the future. We were also discussing strength and what it means to be strong. Also, we discussed what sort of needs Eric and Katy will both have in the upcoming months. It is important to let Katy feel involved and part of everything we have going on. Anyway, in the end, Peter gave me some things to read over regarding the spirituality of children and it was good.

In the afternoon, Nancy, Eric's tutor, visited. They are working on a projet together. Unfortunately, Eric started really not feeling well while she was here. In the end, they did some work, but Eric got really tired, so Nancy put him into bed and he fell asleep before 6pm.

I checked his temp and his low-grade fever was climbing. In the morning, on Thursday, it was no longer low-grade - it was up to 104 F. So, called the docs and we ended up heading into the ER at 6 am. Katy, unfortunately, wasn't feeling all that well by this time, so I just brought her along as well. At the ER, they gave Eric antibiotics and his fever dropped a bit. They also did counts and Eric's ANC was very low (as expected) - it was 80 (normal is 1500). Well, they did send us home after his antibiotics with the promise to call if he got worse again.

After the ER visit, I called the pediatrician and got Katy into see her doc - it turns out that what she had was just a virus, but it was just enough to make her ears hurt and make her all stuffed up.

On Friday, Katy stayed home again and Eric was feeling a little better. Friday was also scrapbooking night and I was hosting, so I cleaned cleaned cleaned. All in all, the evening was a success - we had a bunch of kids over - Eric and Katy played with them. I scrapbooked and we all had a good time.

Saturday, Mike got home (yeah!) at around noon - he was tired, but was glad to be home. Then, in a surprise moment, my brother Jason turned up at our door! I knew that he was coming, but I expected him on Sunday! So, the rest of the weekend was spent kind of hanging out, resting and, of course, playing video games.

Jason is working on his PhD in Computer Science, so he knows all of the cool computer game technology out there. The game he got the kids hooked on this weekend is called "World of Warcraft". It is a little less violent than the name makes it out to be. It is a massively-multiplayer online game - meaning that you have an accout and play online with about a zillion other people, tho I think the fun part are the quests. Anyway, it is always updating and is kind of a dungeon-y game. We can make it so that all of us play at the same time - if we had enough computers. We can form a group and all go adventuring together!

Well, Jason will be here all week and we have a busy week ahead.

In fact, today is busy:
- Katy goes to school
- Blood draw for Eric - 10 am
- 2 pm: Meeting with another deck contractor
- 3 pm: Katy goes to orthodontist - gets her braces?
- 4 pm: Nancy comes to work with Eric on his project
- 5:30 pm: Barb, energy Therapist, visits

I think that's it for today.


Time to get Katy off to school!

-Kasey

Monday, March 14, 2005 6:20 AM CST

Hi all -

It has been a pretty slow weekend. Well, except for 20 minutes last night, oh, and yesterday morning. And Saturday. OK, it really wasn't slow at all...

Eric is starting to feel the effects of his last chemo - he is looking really pale and sicky again. I'm betting on low counts - he'll get a blood draw done today.

So, back to the weekend. Mike took off on Friday for China again. He promised to bring back lots of cool stuff - i.e. more pearls! He ended up leaving here at 10-ish or so on Friday, but his flight was delayed and they didn't end up leaving the Twin Cities until after 4 pm! Because of h the delay, he missed his flight to Beijing from Tokyo. The next flight was 5 hours later. I guess he was pretty tired when he finally got there. At least he was with others from 3M, tho. He was sitting behind his boss on the plane! (Hope Mike didn't snore - you know, don't want to do anything to jeopardize that next promotion, eh?)

Friday was pretty laid back here. Eric and I put together a puzzle for a while, then Eric did a bunch of reading. He's onto Harry Potter and the Cup of Fire - the 5th book of the series. Then, in the evening, I went across the street to play Bunco. Katy went with me - mainly because she pitched a fit. I have really mixed feelings and told her that she can no longer come to Bunco. It isn't that she's annoying or anything, but she's still a kid and moms to need to get away from kids now and again. She doesn't really like to accept that, tho. She also kind of thinks of herself as something other than a kid. Not an adult, but not a kid.

Saturday, Katy, Eric and I went to see Robots. I thought it was a really cute movie - the story is simple, but it was really fun, visually. Eric kind of had a fit - he didn't want to go. I had to plead, drag, bribe, cajole, threaten, and push him to get out the door. He agreed, finally, because he said that I "wore him down". Then, at the theatre, we was bound and determined to sit outside the theatre, reading, just to spite me. I told him to at least sit thru the previews - and that hooked him. In the end, he loved the movie!

Afterwards, we hit Barnes and Noble (thanks Anu! The Gift Cards were a hit!) Eric picked up another Deltora book - I think he has them all now. He even set aside Harry Potter for a while to read his new book!

Saturday night, I went next door to chat with Angie and her friend, Erik (who has spent time in Iraq, but can't tell us anything about it. It's classified.) Katy and Jackie were at our house, playing the Sims. Eric read. Alex juggled. (Alex is Angie's son - also in 4th grade - he's taking juggling lessons and is getting pretty good!)

Sunday, Katy, Eric and I made LOTS of plans. We were going to go to Old Country Buffet, then Target, then go Swimming at the YMCA. Well, plans change, don't they? We got to Old Country Buffet and had a wonderful breakfast that Eric promply puked up behind the salad bar. Kind of puts a damper on the whole atmosphere for the rest of the diners, I would bet. We then cancelled the rest of our plans...

At home, I gave Eric some zofran and hooked him back up to his IV. I had unhooked him since he had been doing so well, but I guess it really was needed. He then watched The Lord of the Rings for the entire day. I napped. I didn't mean to and I didn't even think I was tired, but I guess I was, since I slept for nearly 3 hours.

In the evening, we got together with Angie and Lisa for dinner - it was "leftover night" and we shared our leftover bounty. It was a good feast! Eric, however, didn't eat at all.

Later, at bedtime, Eric pitched a fit - he didn't want to turn off his movies. I, once again, had to plead, drag, bribe, cajole, threaten, and push, but this time, there was nothing for it. He ended up in the middle of a huge temper tantrum - (in which he was biting, hitting and throwing things). I know he wasn't feeling well - it has been a long time since he's had one of those. Well, in the midst of it, Eric got a bloody nose. Wow! It was really a visual spectacle! Nothing really is as shocking as blood streaming down your son's face and seeing a trail of blood in the bathroom, with the toilet covered in blood. I think it shocked the bezeebers out of Eric, tho. He promptly forgot about the movie!

I called the hospital, but the nose bleed, amazingly, stopped within 10 minutes, so we didn't go to the ER. I think it scared Eric. I know it scared me. We cried a little and he took a bath to wash off blood and I had him sleep with me last night. We both apologized for arguing and fighting and it was all OK. Whew!

Well, time to take Katy to school!
-Kasey

Thursday, March 10, 2005 7:00 AM CST

Hi! this is super quick, since I have been lacking in my writing duties, but have to leave in 1 hr.

Eric had chemo on Monday - it went really well. He got Tira, Doxorubicin and Cyclophosphamide. The hospital did some new things and we got in and chemo started at 10:30 am! Wow - that's a record!

Eric was a little sick around noon for about 45 minutes, but we got it under control pretty easily. He napped off and on during the afternoon. In the evening, around 6 pm, he started getting hand cramps, but it seems we kind of got that in check as well. Between the Ativan, Percoset and a new drug called Gabapentin, which help with nerve pain, Eric's cramps are pretty mild and generally confined to his hands.

Eric and I went home on Tuesday and yesterday was spend kind of hanging around. He read and in the afternoon, watched some TV. I had a Girl Scout Troop meeting with Katy and the other GS's in the afternoon, so my day was spent getting ready for that.

We had a woman over in the evening who is a "holistic" type therapist. She does "energy work" - as in she "swept Eric's energy field of the heaviness of the chemo". Sounds and seems a bit hokey, but it is sponsored by Children's Hospital - the Integrated Medicine group is looking at ways to help families with the holistic approach to healing. So free to us. I am leery, but I have to say, after a 1/2 hour of being "swept", Eric did have more energy, and he actually went to bed on his own and slept all night without issues. Who knows...

Today is full:
- Getting quotes on building a new deck (3 guys coming over today)
- Blood draw in clinic at 8:30 am
- Dr. Einzig (psychatrist) at 9:30 am
- Dr. Troy (psychologist) at 11:00 am

I can't remember if Mrs. Lincoln, Eric's tutor, is coming by this afternoon - I think so, tho.

Well, gotta get going - Eric's not up yet and is is snowing, so traffic will be awful!

-K

Friday, March 4, 2005 10:12 PM CST

Hi! We just received word from Dr. S regarding Eric's PET Scan yesterday.

The PET scan works by injecting a radioactive sugar into the bloodstream. The detector looks at where the radioactive sugar is concentrated - the thought being that cancer cells grow rapidly and take up sugar at a much higher rate. So....

The uptake in the posterior right pelvic mass seems less intense than on the previous PET (in July 2004). There are two small areas of uptake in area of the left distal ureter. Dr. S is uncertain as to the significance, since there are no masses seen in this area. There is some pf the physiologic tracer (radioactive sugar) still within the ureter, but we can't exclude the possibility of minimal residual tumor. No other areas suggestive of viable disease (nothing in the lungs!).

Quote from Dr. S: "Looks good and makes me wonder about significance of "progression" seen on scans....lets push ahead and rescan in one month."

Chemo will begin on Monday inpatient at Children's Hospital.

-Kasey

Wednesday, March 2, 2005 10:47 AM CST

So - here's what everyone has been waiting for - a plan (of sorts).

Mike, Eric and I visited Dr. David Slomiany yesterday. Eric was CRANKY when we first got there - he knew what we were going to be talking about (his life and life expectancy), so he was kind of lashing out. Completely understandable, really. Anyway, once we got his height/weight and a quick exam out of the way, we "released him" to go play with Sarah, the child life specialist. Her office is packed with games/toys/fun colors, so it was much cooler to hang there.

Then, Mike and I chatted with Dr. S for probably 1 1/2 hours. We discussed all of the surgery options, radiation options and chemo options out there. He did send e-mails to and talked to several of the Rhabdo docs in North America; Dr. G. Pappo out of Toronto, Dr. B. Reney out of MD Anderson in Houston, Dr. Breitfeld out of Duke, and Dr. C. Arndt out of Mayo. He also talked with our Radiation Onc doc regarding intraoperative radiation. To be honest, none of these docs were very helpful. There was a lot of "hmmm - tough one". The responses were really short from all of them.

Anyway, of everything we have seen or talked about, what we concluded was that Eric's current chemo regime IS showing "partial response". It is keeping the mets in his lungs stable and even seemed to be affecting the abdominal mets - especially the ones on the left side. There is one more chemo regime we can try that has shown some promise that was developed in Italy. Of the 8 RMS patients (RMS - rhabdomyosarcoma), there were 3 that had a response to treatment (of course only one of those 3 were ARMS - alveolar rhabdomyosarcoma - the other two were ERMS - embroynial rhabdo, which really is a different animal).

At any rate, here is the plan for the next few weeks:
1) Tomorrow, 3/3/05, Eric will have a PET scan. This will show us areas of active growth in Eric's body. We especially want to know if there is anything new or if the ones in his lungs are still active.
2) Monday, 3/7, Eric will go inpatient to get another round of the current regime, which includes Cyclophosphamide, Doxorubicin, and Tirapazamine.
3) Roughly two weeks after chemo, Eric will get another set of scans (CT, MRI and maybe PET) to see if there was any growth or even any reduction in the size of the growths.

If there was no growth or if there was reduction in growth, we will probably continue the current chemo regime to the end of the study period, which should be in May sometime.

If there WAS growth, then we will probably change to this other chemo: Vinorelbine and low-dose Cyclophosphamide in the Treatment of Pediatric Sarcomas: Pilot Study for the upcoming European Rhabdomyosarcoma Protocol. Or we may custom-develop a treatment using Topotecan and/or Irinotecan.

At any rate, Dr. S agrees that since the growth of the tumors is slow right now, we don't want to jump to a Phase I trial just yet. He doesn't want to do surgery right now because if you can't get it all and/or follow up with enough radiation, then you run the risk of releasing rhabdo cells into his bloodstream which may cause it to spread more rapidly.

I found out that the reason why Eric can't have too much more radiation to his pelvis is that if you go beyond the established max, it causes irrepariable damage to major organs in the area. However, the radiation onc is still looking at intraoperative radiation - open him up and apply just the right amount of radiation directly to the tumor. Not sure if that's a possibility.

Now, later down the line, there are still many options to keep him comfortable. If the tumor gets so big it cuts off his ability to pee or something like that, then they may do some surgery just to make him comfortable - but it definately won't cure.

Anyway, although there probably isn't a cure at this point, we are trying to keep this from spreading as much as possible, so keep him "healthy" as long a possible. There is an outside chance of a cure, but we'll take it day by day.

So, Mike and I are feeling better - we have a plan at least. Eric is calmer also.

-kasey

Monday, February 28, 2005 11:24 AM CST

We did our darnedest to stay busy this weekend, and I think we succeeded.

On Friday, we started painting Eric's room. We got the two colors of blue done and then I took a nap. Friday evening, we went to the Mall of America and had a pretty good time. We went to Underwater Adventures to get some "inspiration" for Eric's ocean theme for his room. It is a pretty good time, actually - there is a huge aquarium with a tunnel thru it, so you ride on a moving sidewalk under the water and the fish. The coolest was seeing "Calypso" - a sea turtle that was right up near the side. Katy kind of bonded with her (well, if you can bond with a sea turtle in about 1 minute). We also watched the keeper feed the pirahanas. Pretty cool.

After Underwater Adventures, Eric and I hung out at Legoland and built cars to race while Katy and Mike rode rides. When Lego closed at 9 pm, we all rode a couple more rides, then we went home.

Saturday morning, we sat down for a "Family Meeting". Mike and I talked with the kids about Eric's scan results. Right away, Eric knew that "I'm probably going to die, huh?" He teared up a bit and later in the day he cried a little. We told him, however, that we weren't giving up just yet. The next thing he said was that he didn't want anyone to know. When I asked why, he said, "I don't want anyone to worry about me." I did tell him that I'd already told some people and that it wasn't really fair to not tell anyone what is going on. He thought about it, and said OK, but he wants everyone to NOT WORRY ABOUT HIM! Katy is upset, but it is manifesting itself in different ways. She really helped out a LOT in Eric's room this weekend. She did many of the fish on the walls and LOVED the painting. She was also kind of testy with Eric, tho. She'd get angry with him very easily - I think she's kind of angry at the whole situation. Unfortunately, she's also ADAMENT that she WON'T see a psychologist.

Well, Saturday, after everyone had recovered somewhat, we cleaned up and ended up going back to Mall of America area to hit Ikea - we didn't have time the night before. While there, we had a great time just messing around. We also bought Eric a new bed (with TONS of underbed storage) an new bookcase, and new shelves. We also found a cool little lamp with a green glass ball - look for it on his dresser in the pix above. It is cool - give a greenish hue to the room.

Saturday evening, we headed over to Lisa B's house. The grownups had some wine and conversation, while the kids and Mike (ooh, that was mean, huh?) worked on a puzzle and/or played. Eric had a good time with the kids - it is good to see him playing with other kids. So often, he'd rather just watch TV or be by himself.

Sunday (yesterday), Katy and I spent the whole day on the room. Mike and I put together the bed and furniture and hung everything back up. Katy and I added the fish and put a few of the things back in Eric's room. Eric, however, was feeling like vegging during the day. He watched TV for most of the day and was generally pretty moody. He'd pop in and check on progress now and again, but other than than, he was the TV junkie that he is. I think Mike managed to get him pryed away for a while to work on his Pinewood Derby car for a few hours.

Anyway, we are all pleased with the results of Eric's room. Now, however, we have to go thru all of the other "STUFF" that isn't yet back in his room - and there is a LOT of it!

Last night, I asked Eric if he was going to go to school today. He told me "no" - that he just wants to do chemo again. So, it is proof that he hasn't given up the fight yet. Eric didn't sleep well last night. He was up most of the night - just worrying, I think. This morning, he got up early and took a shower and went back to bed. He's still there now. As it is almost noon, I had probably better wake him up so we can now clean up my office, which is where all of his stuff is.

Tomorrow we meet with Dr. Slominay. I hope I have better news for everyone at that time...

Take care,
Kasey

Friday, February 25, 2005 5:02 PM CST

OK, we have an appointment to discuss options with Dr. Slomiany next Tuesday. However, he has been pretty blunt - At this point, Eric is beyond a cure. Any action taken here will be to balance therapy with the quality of his life.

I don't know how long we have. I don't know much else at this point.

So, we are doing some things to "improve the quality of life". Today we started by repainting Eric's room. WAY back when he was 4 or so, we painted his room a very light blue. From that time, he ALWAYS wanted his room a darker blue - he wants it to look like the bottom of the ocean - so, that is what we are doing! Right now, I've got two colors of blue on and they are drying - then I'll do some blending so that the blue gets lighter as it goes up the wall. I'm going to add some darker blue to the bottom, then add some green kelp and some orange and yellow fish. Should be nice! I'll post pix when we are done.

Also, this afternoon we are going to go to IKEA and see if we can find a new bed for Eric's room. Then we'll do some rides at Camp Snoopy tonight. Should be fun! Of course, this is all if I can get Eric away from the TV! (Static Shock is on right now....)

Take care,
kasey

Wednesday, February 23, 2005 10:04 PM CST

This is the latest news from Dr. Slomiany:
Kasey:

Continuing with chemo on which there has been tumor progression is certainly not the best way to proceed. Tira [tirapazamine] is of unproven value, but we can try one more cycle and scan again in a month, but there is no evidence that Eric has gotten benefit from Tira.

In reviewing the literature and in discussions with others, partial debulking [i.e. surgery on the tumor in the right abdomen] could be considered if Eric had no distant mets[metastasis], but given he has had/has stable pulm [pulmonary, i.e. tumors in the lungs] mets it makes no sense, esp. since Farniak [radiation oncologist]says he could only get about 1600 cGY to the pelvic area, which is inadequate to treat RMS[rhabdomyosarcoma]. She also did not feel proton beam would provide any benefit to Eric, but she was going to check with her XRT [X-ray radiation therapy} colleagues.
She is also going to investigate intraoperative XRT, which she thinks could be done at Mayo.

I've heard back from Raney, Pappo and Breitfeld (he is chair of the relapse protocol)[other oncologists who specialize in Rhabdomyosarcoma], and I already sent you Arndt's response. Still waiting for a response from Meyre-head of the RMS subcommittee. I asked them to comment (as I did Arndt) on chemo options, including Phase l, vinorelbine, Cyclo/topotecan and any other thoughts they might have, as well as Proton beam XRT, surgery, etc.

All 3 said that they would try either Cyclo/Topo or Vinorelbine/Cyclo...none had a favorite.....all stated that they felt any regimen would be palliative at best. All also commented on trying Phase l (which was Arndt's preference, as you recall). 2 out of 3 commented on XRT, and said only give it if he responds to further therapy...of course this was before I knew whether Eric could even get any additional XRT to the pelvis....I think we can irradiate the lungs.


That's what I know thus far.


Palliative means: treatment without cure

Not positive, but we have lots of questions and will continue to fight.

-Kasey

Monday, February 21, 2005 6:45 PM CST

Hi - kind of a frustrating day for us. The doc was busy with other stuff, so we communicated via e-mail. Still lots of questions.

Here's the note from Dr. Slomiany:

"Spoke with surgery this morning...Wahoff looked at the scan and feels it would be a difficult surgery to get the entire mass of tumor, but he is also going to show the scans to others in his group. As you are probably aware it is not worth partially debulking RMS, unless he can get irradiation to the area, so I spoke with Farniak and she is going to look through Eric's old radiation stuff to see if he is able to get irradiation to the pelvic area, based on his previous radiation. If he is able to get pelvic irradiation, it is probably worth irradiating the lungs as well.

I've spoken to Arndt and she feels that from a chemo standpoint, Eric has seen all active agents and should go for a Phase I agent."

Interpretation: Dr. Wahoff may not be able to do the surgery and it may not be possible to get the tumor out without removing Eric's bladder. Dr. Carola Arndt is a rhabdomyosarcoma specialist at Mayo and she thinks that we need to move to a Phase I clinical trial. These trials are only available to those with a "dismal" (and that is a quote) prognosis.

Anyway, Mike and I aren't done. We are researching proton beam radiation (available in Boston and Loma Linda, CA) and we think that the current chemo that Eric's on (with the Tirapazamine) should work if given a chance. The growth that he has had has occured since the last time he's had Tirapazamine (12/3/04), so it makes sense (to us) to try again with the Tira. We also want to see if there is some surgeon out there who may be able to do something for Eric. Finally, we want to talk with a sarcoma specialist in Houston (Dr. Reney). We aren't giving up yet!

Right now, Eric's watching "Ed, Edd & Eddy" - a horrible little show on Cartoon Network. He's giggling at the stupid pratfalls and silly voices. He ate TONS of chocolate chip cookie dough and hot dogs today - just like a normal kid! He read a TON today and is doing so well, emotionally. I just can't give up on him now!!!

Katy's had an emotional day - today she got her "appliance" for her teeth installed. It's not quite braces - just this metal thing that is attached to her back teeth on the top that we crank every night with a little key - it will spread her back teeth apart - making more room in her mouth for teeth (and braces). She is have a rough time with swallowing and talking with all of that metal on the roof of her mouth. She said that her teeth don't hurt - but we've kept her pretty doped up today with Tylenol and Motrin. (We also gave her an Ativan to "destress" her. shhhhhhh. The nice thing about having a cancer kid in the house is that we have some wicked drugs about the place. Tho we did throw away our Morphine several months ago and Eric is out of Percoset.)
Anyway, Katy's upset because she can't speak clearly, but she'll get over it.

Well, maybe I should make dinner....

-Kasey

-Kasey

Friday, February 18, 2005 9:24 PM CST

Scans update: mixed results (again).

It appears that the tumors in Eric's lungs are all stable and very small. Review of previous scans show that there are a total of 3 very small spots in his lungs that have always been there, but there is no change.

The tumor in the left inguinal lymph node chain in Eric's abdomen appears to be completely gone! That's great!

The bad news: the tumor in the right inguinal lymph node chain, however, appears to be slightly bigger and is now pressing on Eric's bladder. This is bad for two reasons: 1) the tumor is pressing on the bladder and is probably the reason why he is feeling pain when he urinates and 2) because the tumor is growing, it means the chemo isn't working on this tumor for whatever reason. The tumor isn't really a sphere shape anymore - it has some "fingers" which are starting to wrap around the bladder.

Anyway, Dr. Slomiany has a page into Dr. Wahoff, the pediatric surgeon at Children's. Dr. W will review the scans and see if it looks like surgery will help. The reasons why we would do surgery are 1) by reducing some of the bulk of the tumor, the chemo will be more easily able to penetrate to the center, where the newest growth appears to be taking place and 2) cutting away some of the tumor often stimulates tumor growth. This seems backwards, but it really isn't. The chemo medications work best on cells and areas of rapid growth. The Tirapazamine is specifically designed to kill cells with low oxygen levels - which means fast-growing tumor cells. By cutting the tumor, thus stimulating tumor growth (kind of like pruning a tree in summer), then the chemo will actually kill the new branches, which it might not do if the tumor is growing slowly, like it is right now.

Whew!!!

Anyway, we will discuss options. Dr. Slomiany will also be talking with several other sarcoma docs regaring treatment and with our radiation oncologist to see if there are still radiation options available to us. Eric may have had his "lifetime maximum" for radiation, but we'll find out.

Right now, Eric doesn't really know what is going on. He was in the room when Dr. Slomiany reviewed the results with Mike and I, but he was reading a book. You can pretty much run a tornado thru the room when Eric is reading and he'd never know it was there - he gets so absorbed when reading. Mike and I agreed that we'd wait until we know if he is going to have surgery until we talk with him. We'll know that by Monday. Dr. Slomiany is thinking that in all probability, Eric will have surgery early next week to remove all or part of this tumor. Could be pretty major. Hopefully the bladder isn't involved....

Anyway, just wanted to let everyone know. Mike and I are kind of numb. On one hand, we are thrilled about the one tumor on the left being gone, but are seriously worried about 1) surgery and the impact and recovery and pain, etc etc and 2) implications about whethere the chemo is working or not. If the tumor is growing, it would appear that the chemo isn't working. Or maybe it is, but not fast enough. Or maybe one of the drugs is, but we aren't giving enough. Or or or or ....

Anyway, we aren't giving up on anyone yet!

I'll keep you all posted.

Thanks for sticking with us!
-kasey

Wednesday, February 16, 2005 10:15 AM CST

Yeah! We got to go HOME yesterday!!!!

Thank you SO much to everyone who signed the guest book! It is great! I read a bunch of the entries to Eric on Monday and he had a silly grin on his face the whole time! Today I'll catch him up on the rest. Also, thanks to Mrs. Werner and her class for sending home Valentines! Last night when Eric went to bed, he had chocolate ALL OVER his mouth - and even on his HEAD! It must have been good, huh?

Well, Monday, Eric and I pretty much took it easy. His fever was on and off again all day. To keep busy, Eric played Harry Potter & The Chamber of Secrets for the PS2 all day!

Monday is a much more, well, active day at the hospital, compared to the weekend. Well, I mean that there are WAY more people milling about during the day - doctors, nurses, nursing students, therapists, volunteers, and other general hangers-on. We had at least 5 volunteers pop into the room at some point on Monday! We also had some other visitors - players from the Minnesota SWARM!

The MN Swarm is the new professional Lacrosse team here in St Paul. They play a couple of games a week at the Xcel Energy center (may as well use it for SOMETHING, since the hockey folks can't seem to get it together and come to an agreement). Well, here is a link to the Swarm's web site: MN Swarm . It was kind of funny, actually. Eric, at first, didn't want to meet the guys. He was too busy with the Harry Potter PS2 game and just didn't want to be disturbed! But, Mom finally prevailed and convinced Eric to put down the controller for a minute or two. Well, not really put it down - Eric ended up keeping his eyes glued to the TV screen and continued to play WHILE he was talking with the guys. Actually, the two players, who looked maybe 2-3 years older than Eric himself (OK, a slight exaggeration - but not much of one - these guys are YOUNG!), well, let's just say that they put their time in with the old PS2 as well. They talked with Eric for like 10-15 minutes about different games they like and about the Harry Potter books as well. It was kind of funny, actually. Well, towards the end of the visit, Eric actually looked up at the guys and did a bit of a double-take. Turns out, one of the guys had gotten a "stick-in-the-face" (highly technical Lacrosse term meaning stick in the face) and was sporting a black eye and 23 stitches on the bridge of the nose! Well, at that, Eric opened up and the guys all started comparing various injuries and scars. What kind of weird one-ups-man-ship comes into play regarding scars? "Look at this one!" "You think that's bad, look here!" "Ooh, that is nasty, but how 'bout here?" Anyway, Eric promply whipped off his shirt to show the guys his hickman line and proudly pointed out the stitches that keep the line in place. To give the guys credit, they were pretty cool about it and really got in close for a good look. Made Eric feel proud - I think in his mind, he won the "Battle of the Scars". Anyway, I know that one of the guys is Sean Pollock, but I can't remember who the other guy was, maybe Chad Culp - hard to say, because Sean's stitches kind of drew the eye to them, so I wasn't really paying attention to the other guy.

Anyway, one thing Eric was adament about - he did NOT want his picture taken. Not sure why - just didn't. He claims it is because he's shy. Ha!

Also on Monday, we had our next door neighbors visit in the evening! It was a nice little visit. Jackie and Alex brought Eric a nice Valentine's day card and a couple of books for Eric. I think they look good! Angie brought me a gift of a bag of Chocolate Turtles! YUM! She and I popped down to the cafe (that's a a highly technical hospital term for "place where there is bad food for sale at outrageously high prices") for a Diet Coke. Unfortunately, they only had Diet Pepsi. It was really nice of them to stop by. By then, tho, Eric's fever was back up and he was a little non-social with the kids. They chatted a little, but it was pretty subdued. I think he's still glad they came, tho.

After Angie and the kids left, Eric watched some TV and I played a computer game, ate my Turtles and drank my Diet Pepsi. You know, it is extremely important to have a balanced diet - you balance the high calories of the chocolate with the low calories of the diet soda and voila, instant weight loss! No? You think not? Bummer.

Yesterday, the Dr. Moertel visited the room around 10:30 am and gave his blessing for us to go home. He'd gotten 5 days of antibiotics & IV fluids. His fevers, while still there, were lower - between 99 F and 101 F. The abdominal X-ray we got looked normal. His blood counts were all pretty good, even though his hemoglobin was low again on Tuesday (7.0). So, he told me that after Eric got a Red Blood Cell transfusion, we could leave. Well, the RBC transfusion, as we all know, takes a LONG TIME to get.

RBC Transfusion process:
1. Doctor tells patient he/she will need a transfusion.
2. Doctor tells nurse that the patient will need a transfusion.
3. Doctor talks with other doctors, nurses, various hangers-on about weekend, Valentine's Day activities, etc. (take about 30 minutes or so)
4. Doctor eventually completes paperwork/orders for RBC transfusion.
5. Nurse (and nursing student) come in to tell patient he/she will be getting an RBC transfusion.
6. Nurse (and nursing student) leave room to go get syringes, etc. for drawing blood from patient for type/cross.
7. On the way to the supply room, Nurse (and nursing student) answer several calls from other rooms and talks with other doctors, nurse, various hangers-on re: weekend and Valentines activities. (takes approx. 30 min)
8. Nurse (and nursing student) return to room and takes blood for type/cross. Samples are labeled and sent to lab.
9. Someone (who know who) orders RBC from Red Cross.
10. Insert many steps here - I'm not sure what they are, but there must be a LOT because it takes 2-3 hours to finally get the blood delivered to patient's room.
11. Nurse (and nursing student) come into room to ask if patient needs pre-meds before getting blood. I say "No".
12. Second nurse comes in to ask if patient needs pre-meds before getting blood. I say "No".
13. Doctor comes in to ask if patient needs pre-meds before getting blood. I say "No". (I guess it is better to be safe than sorry, eh? Tho I wonder what would have happened if, just to mix it up, I'd have said "Yes" once.)
14. Nurse (and nursing student) brings blood to patient's room and hooks patient to RBC. NOW the transfusion takes 2-3 hours, so start you clock! All of the time up to this point, doesn't count as transfusion time, just prep time.
15. After blood bag is empty, nurse (and nursing student) turn on "flush" to rinse the lines and get the "last drops" of blood into patient. Takes another 30 minutes.
16. After flush is done and IV pump is dinging, nurse (not the orignal one with the nursing student), comes into the answer nurse call. She sets pump to flush some more and tells patient, "your nurse will be right in."
17. Second flush finishes and nurse (with nursing student) comes in and sees it is done, so she sets it to flush for a third time while she gets supplied to finish up.
18. Nurse (and nursing student) goes to supply room, making sure to chit chat with the various hangers-on and answer several more nurse calls.
19. Nurse (without nursing student - by this time, the nursing student has left for the evening) returns with new caps for hickman, saline and heparin.
20. Nurse unhooks patient from all IV pumps and we are ready to go!

21. Patient, however, is NOT ready to go because he has since started a new PS2 game and is "In the Middle of a Boss Battle, MOM!"
22. Patient's mom waits....

We did end up getting out of the hospital at 5:30 pm last night. Eric's fever spiked a little right before we left (101.3F), but the doc said we could still leave!

It sure is nice to be home and sleeping in my own bed (or one of my own beds - any one of 'em will do!) Eric's appetite returned last night and he ate two cheesy tortilla (known a Quesadillas to the rest of the world) and the aforementioned chocolate. He also ate a little bit of chicken. Katy was glad to see us, as was Mike. Katy had made Eric a nice Valentine's Day card, so it was waiting for him. Of course, it was written in Spanish, which Eric has trouble reading. Is that some bizzaro sibling thing to do? There is a translation, but does it translate properly? hmm.... (No, it really is very sweet of Katy to make a card and it says, "Remember, I will always love you (like a sibling).")

Eric wasn't really tired last night, since he slept until 2 pm on Tuesday - his hours get all messed up in the hospital. He's still asleep now and it is 11:20 am. Well, I guess I'd better go wake him up!

Take care,
Kasey

Monday, February 14, 2005 3:16 AM CST

Happy Valentine's Day to you all!

Well, it is Monday already - and yeah, it is EARLY and I'm up - and we are in the hospital. I spose I should go back a few days, eh?

I can't remember when I last updated, so I'll go back to last wekk. Eric had chemo for 5 days in-clinic starting two weeks ago. His counts were low, but good enough to be able to do chemo on schedule (for once). Well, last Tuesday, Feb. 8 (I guess), Eric had labs drawn and his red cells were low, so he and I went into the clinic for a red blood cell transfusion. I was feeling pretty icky on Tuesday, so when we got home, I went straight to bed and slept and slept.

Wednesday was a pretty good day for Eric, but I knew his counts were still low and his energy levels were still low, so he stayed home from school again. When Katy got home from school, she had brought a present from a friend - copies of "Harry Potter and the Sorcerer's Stone" on CD to listen to (a books on tape). Eric had an appointment with Dr. Einzig in the late afternoon, so Katy came with us and we listened to the CD the whole way there and back. Eric was so into it, that when we got home, he picked up the book from our bookshelf and kept on reading!

Thursday, we had his labs drawn again and this time, his platelets were pretty low and he had a low-grade fever (99 F or so). A few hours later, his fever had risen to 101.4 F, so he and I went into the clinic where the doc ordered up some antibiotics for Eric as well as a platelet transfusion. Eric killed time by continuing to read the Harry Potter book he'd started the day before.

Well, it looked like they were going to let us go home that afternoon with the idea that Eric would get IV antibiotics at home. Eric's body decided that maybe that wasn't a good idea and spiked a fever of 103.7 F right as he was finishing up his platelet transfusion. Well, with a fever that high, there was no way the dcc would let an opportunity to send us into the hospital pass by. So, we checked into room 4218 - with Eric kicking and screaming (well, metaphorically anyway) the whole way.

Actually, Eric took the news pretty well, but did want some new books. He finished the first Harry Potter Book less than 24 hours after starting it, so when Mike and Katy came down to the hospital, they stopped by the bookstore first and bought Eric some more Deltora Quest books (numbers 5,6.7 and 8) and the first Deltora Shadowland book. When we got our room, we found that we were in the room next to Jesse - another Rhabdo kid who lives in North St. Paul. Jesse was dx in December, so it was good to meet him and his family. I feel kind of bad that we weren't more social, but Eric (and I) weren't feeling all that hot. Mike spent Thursday night in the hospital because I had "Bunco" night on Thursday.

Bunco night is a nice get away for me - but this time I was feeling a bit guilty aad worried for Eric. Bunco was at my next-door neighbor's home, so, at first, Katy decided to stay at home and read. However, she got lonely after a while and ended up joining us. She got to see Mom's friends acting kind of goofy and laughing a lot - so we swore her to secrecy and told he that she must never tell the Dads about what we talk about (you know, "What Happens at Bunco, STAYS at Bunco" or something like that). Anyway, it was a good time, but I was still feeling a little stuffed up and headachy. I kept thinking it'd just go away, tho.

Well, Friday, Katy went to school, so I packed up some stuff, headed for McDonald's and went to the hospital. Eric's fever had dropped, and was hanging around the 101.5 - 102 range most of the day. Better, but not great. so Eric and I stayed the night on Friday. They also gave Eric another red blood cell transfusion - I guess the fevers and whatever it was he was fighting was just eating away at his cells, so they gave him some more to boost his energy levels. Eric spent ALL DAY reading. He devoured those books Mike and Katy brought the night before and finished ALL FIVE by bedtime!

I still was feeling not great on Friday, but chalked it up to not sleeping well on Thursday night. Eric and I ended up turning out the lights early on Friday (as soon as he was out of books!), so I slept relatively well - well, if you call waking up every 2 hours or so well. And I did stay up from 2 am to 4 am, but that's not unusual for a hospital stay - look at me now!

Saturday morning, Eric's fever seemed like it had gone away and his temp was normal! Yeah! The doc wanted Eric to spend one more night here, tho, so we got a day-pass and walked to the Boat Show in the Rivercentre. Eric's white counts were still really low, so we made him wear a mask, but he didn't seem to mind.

After the boat show, we headed home for a few hours and kind of vegged. It was a gorgeous day out - 50 degrees!! Unheard of (well, except for the previous weekend, which was also gorgeous). So, Mike and I washed the minivan. I really wanted to take a nap, but thought the outdoor activity could be better. It was good - my van is now clean and smells much better!

Well, by the time we headed back to the hospital on Saturday afternoon, ERic's fever was back in full force - he was up to 103 again. We gave him Tylenol and they switched Eric to two different antibiotics. Mike got to spend the night on Saturday night.

Well, Saturday night, I finally figured it out - I was SICK! And I finally admitted to myself that I'd been sick for over a week, so Sunday morning, Katy and I took a trip to the Minute Clinic (though it should be called the 120 Minute Clinic!). There, I was diagnosed with a sinus infection - no strep throat, thank god! - and was given a prescrption of antibiotics. I feel rotten, tho. I kept thinking "I can't be sick - there's no way I'm sick - I just am being wimpy - suck it up - Don't be sick", but I really WAS sick - and maybe that is why Eric's sick - I keep re-infecting him when he has no white cells to fight viruses and infections. Well, now we both are on antibiotics.

Sunday, Eric got another platelet transfusion, but it looked, again, like his fever was down, so he got another day-pass and came home. He was feeling well all day long, so it looked like the new antibiotic were working! So, last night, Eric and I came back to the hospital. We brought our PS2 - since Eric was getting tired of reading - he'd just plowed through like 8 books in the last several days, so I supposed he could have a break (for the record, I've read 3 books in the same period of time - all by Terry Pratchett and all really funny! Thanks Jason, for the X-mas gift!) It was kind of a bummer, tho - Jesse - our "next door neighbor" had checked out of the hospital. Hope he's doing well at home. We'll have to get the two boys together sometime soon!

Well, late last night - about 10 pm - Eric's fever was back again and he's had it all night. It has been around 102 all night. Bummer. That means no going home today either. Eric wasn kind of bummed out to not be going to school today - Valentine's Day at school is the day you pass out your Valentines and, of course, get them as well - meaning lots of CANDY. However, Eric's appetite has been nothing, and he probably wouldn't have eaten it, but it is the thought, huh?

Our girl scout troop made gift bags for the kids who are in the hospital today. I wonder if we'll get one?

Well, I'm getting sleepy again, so I guess I'll go to sleep. My antibiotics are alraedy starting to work on my sinus infection and I'm feeling LOADS better, but a few more hours of sleep would be nice. It is 4:15 am and Eric's tems is 38.1 C oral (100.5F). Not bad, but not great either. He's getting his antibiotics right now, so the pump will be beeping at me about the time I fall asleep. Maybe I'll sleep right thru it...

If you happen to be reading this, please sign the Guestbook today. Eric doesn't really want to be here, so some Valentine's wishes might cheer him up!

Take care,
-Kasey

Wednesday, February 9, 2005 8:59 AM CST

Good Morning! Wow, is it Wednesday already? I just woke up about an hour ago after a 14 hour sleep. I caught some sort of cold or virus thing (sore throat, cough, aches), so I just went to bed. It felt really good, but I'm still tired. How is that possible? Makes me understand Eric a little more - it would be terrible to feel awful all the time. I'm wimpy after just a couple of days.

Anyway, Mike is home from China - he got home on Friday bearing lots of nice gifts. Sunday, we had a few people over to watch the commercials, er, Super Bowl. We weren't rooting for any team in particular, but we thought Fed Ex played an excellent game.

Eric had counts done yesterday and his hemoglobin was the lowest it has ever been!

Hemoglobin: 5.8 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 43,000 (normal is above 150,000; transfuse < 10, 000)
White Blood Cells: 200 (normal is 5,000 - 12,000)
ANC: 67 (Normal is 2500, take precautions <1000)

So, he and I trucked on in for a Red Cell transfusion. I kind of napped and he read. His ANC is so low, I'm worried about the fact that I am sick, so I'm washing my hands like crazy and drinking lots of Green Tea (antioxidants, you know).

Yesterday was Katy's Girl Scout troop meeting, so I missed that. Luckily, I've got a good, flexible group, so I just took all of the stuff over to Deb's house and the girls met there. This meeting was part of their Bronze Award - they made up some more gift bags for Children's Hospital for this weekend (Valentine's Day). 40 Bags were made and decorated! It is always fun.

I feel really bad about something that happened this weekend, tho. Katy and our Juniors were invited to the Cadette/Senior Get Together on Saturday night because they are going to be Cadettes next weekend. Well, the theme was Black and White night. They dressed in black & white, did crafts, had cake, etc. and were supposed to watch some black & white movies. Well, the DVD player/computer wasn't working well and the black & white movies weren't playing. In fact, the only movie we could get to work was a PG-13 movie, Chicago. I've seen this before, and it is a bit racy, but I didn't remember it to be as racy as it is. Anyway, the leader in charge asked the adults there (including me) if it would be OK - I said I didn't mind (but keep in mind, my memory was of a musical that was pretty cool - not the content). So, it was played and I watched with the girls. Well, many of the parents, when they found out, were UPSET! Most of the girls there were over 13, but some were 12. And the theme isn't really very Girl Scout-y, is it? Anyhow, upon retrospect, they probably should not have watched the movie, but I'm not sure what the girls would have done for the hour and a half. I feel bad 'cause I was part of the decision making and my decision was, apparently, the wrong one. If anyone reading was offended, I apologize. Funny that I feel bad and I wasn't even anyone in charge! I wasn't even planning to stay, but they needed a few more adults in attendance for "safety sake". Anyway, that's me.

Well, I think I'll take a shower and see if I can feel a little more human today. Eric's got a meeting with Dr. Einzig, his psychiatrist, today. Tonight, Katy's got soccer practice. Tomorrow, Eric's getting another blood draw. His hemoglobin was so low, we think he might end up needing another transfusion on Friday. Also, we expect that his platelets will be low by then. Also tomorrow, Katy has an eye doctor appointment and I have Bunco in the evening. Friday, Eric's got a meeting with his psychologist and Katy has Ski Club. Saturday, Katy has her Children's Youth Advisory Committee meeting and she and I have a Girl Scout Leader/Daughter fun day. Should be busy, so I'm thinking a nap today is order, just to make sure I'm feeling well.

Take care,
kasey

Friday, February 4, 2005 11:58 PM CST

The week is over! Thank god! This was a rough one for me.

Chemo went pretty well for Eric. The five days in the clinic got a bit tiresome, but each day we were out by 1 pm, so only 4 1/2 hour days for us in the clinic. We met a few other cancer kids, so it was pretty cool. There are some really neat kids and families who are all battling this icky thing called cancer.

Most of the week, Eric spent his time in the Child Life office with Kirsten and Sarah. They are so cool to let him do that. He played computer games and put together Legos and played games. I got to sit and read or sip java or just chat. It was nice.

Thursday, however, was a BAD DAY. Eric didn't sleep well on Wed night - he was having the "twitchies" - this means that his lower back was really bothering him and his legs and butt kept falling asleep - kind of like when you have lower back pain and the sciatic nerve is being pinched. Well, I finally got Eric sleeping at 1 am after Ativan and Trazadone.

On Thursday morning, Eric's back was still bugging him, and he wanted some more Ativan, so I gave it to him. Well, it affected him a LOT!

So, we went to the clinic and he was still buzzing from the Ativan and could barely walk. Thank god for the handicapped hangtag in my car - I could park close and kind of muscle him thru the halls and stairs. I don't know WHY he felt the need to take the stairs, but he did - guess it was that impared judgement thing.

An hour or so later, they had him hooked to his IV and started Eric's pre-meds - Zofran and Dexamethasone (Decadron) to prevent nausea. Well, we've noticed that each day Eric got the Dex, he'd either not feel well, get flushed or get itchy. On Thursday, it turned into a full blown sensitivity! Eric got flushed, ill, nauseous and then started coughing and choking! He said he couldn't breathe, so I got the nurse and doc and we put a pulseox meter on him (measures the amount of oxygen getting to the blood) and turns out he was down to 75f normal O2 levels! That's bad. So, we hooked him up to some oxygen for a few hours. It took a while for the Dex to wear off, but it did eventually. He was fine in the afternoon, but tired - as was I! The whole thing was a little scary in retrospect - but the docs were nice and calm thru it, so I never really lost it. Anyway, no more Dex for Eric. He now has nice red stickers everywhere in his chart saying that he has an allergy to it. Bummer, 'cause the steroids are good anti-nausea drugs.

Anyway, today, Eric made it thru chemo with no trouble. He was a bit sicky when we got home, but some Zofran helped that.

Also, when we got home, Mike was home from China! That was nice for the kids and I. He was fairly exhausted - the 12 hour or so flight is, of course, awful. Mike got about 1 1/2 hours of sleep, so I made him go to bed tonight at 8 pm or so - after he'd been up for 30 hours or so. Ick!

Before Mike went to bed, tho, he did share gifts from China. Katy got a very nice silk robe (kimono thing), Eric got a nice silk robe also with a dragon on the back. Eric got a great sword! Katy got a cool t-shirt with pandas on it. I, of course, got some Black Pearl earrings to match the ball and chain, er, Black Pearl necklace I received from last year's trip to China. No, really, they are GORGEOUS! I just love pearls! He also had come cool things from the Great Wall - I'd love to go to China sometime.

Well, just wanted everyone to know Mike made it home OK and Eric made it thru the week OK.

I am still very bummed out about Garrett. I also heard news today about a girl named Vanessa with ARMS who relapsed while she was on treatment! The rhabdo has now spread to her bone marrow and they are now going to use chemo to keep her comfortable for the next few weeks or so. All-in-all, not a good week for RMS kids.

Eric's next set of scans are now set for two weeks from today - Friday, Feb 18 (I guess that is the date). He'll get MRI pelvis and CT chest, abdomen and pelvis. Once again, this next two weeks is scary time. Wait wait wait wait.... Hope that it hasn't spread. Hope that it is geting better. Also, from these scans, we'll know more about any surgery and/or radiation options. Not sure if radiation is really an option, tho - he may be close to his "lifetime maximum" of radiation, which kind of sucks. I've heard there is something called Proton Beam radiation which is available in Boston, MA, tho - maybe that is a possibility.

Hmmm. I really want to go to bed, but there is some odd person there. Oh, yah, that's my husband. He's been gone so long, I'm kind of used to sleeping by myself. I was kind of looking forward to it, actually. When I sleep by myself, I find that I sleep all thru the night, but when with another, I tend to wake and have trouble going back to sleep. Also, I LIKE sleeping on the left side of the bed, which Mike normally reserves for himself. Well, he's tired and needs uninterruped sleep, so maybe I'll camp out in the guest bed tonight.

Urgh - 'm tird. must go to bed. past midnight and will be tired tomrow. urgh....

nighty night!
Kasey

Thursday, February 3, 2005 6:45 AM CST

Hi and Happy Thursday!

Well, I was right - yesterday, Eric really started feeling the effects of this week's chemo. He vomited in the car on the way home in the afternoon. However, I am a smart girl and now keep emesis basins in the car for just such an emergency (after having to pay premium $ last year for "hazardous waste cleanup" at a downtown carwash!)

Also, Eric's "twitchies" started yesterday. It is not pain exactly, just uncomfortableness in his back and legs. It was bad enough to keep him up last night until 1 am or so. He was tired enough then that he was crying. So I had him take a bath and gave him Ativan and had him sleep with me last night. He's still sleeping, but he'll have a rough day today, I guess.

Katy had bad dreams last night, so she came to visit me at 5 am. I'm sleepy today, so maybe I'll take a nap at the clinic or in the afternoon.

Two more days of chemo this week. Hope it goes well. Mike comes home tomorrow. We are ready for him to come home! Right now, he's in Tokyo - he made a stop over to see how things are doing in the Shinjuku district - seems like they are OK.

Plans for this afternoon include cleaning up the house and watching some more Alias. Katy and I are about 1/2 way thru the 2nd season. The more I watch, the more I like. I was really bummed that it wasn't on last night.

Weather today should be great! The temp will be nearly 50!!! That is unheard of here in MN in Feb. Well, never fear - it'll be icky, cold and snowy again next week.

Well, time to take Katy to school!

Take care,
Kasey

Saturday, January 29, 2005 9:48 PM CST

**** Quick Monday Update: Eric's counts DID recover, so we started chemo today. Luckily it is MONDAY, so no hospital stay!!!! Yeah! But it is 5-day chemo, so we'll be hauling 'cross the Twin Cities every morning to the clinic. Today's went well. He'll probably start feeling crappy tomorrow or Wed, tho. Oh, Katy gets her "spacers" for braces today. I get a big bill ($$$$) for Katy's braces today. Furniture, braces - this is an expensive month!! Take care, Kasey****


I MUST be a crazy person! I let Katy have not one but TWO friends over for a sleepover tonight! One is pretty do-able, but somehow the "sqeeeeeee" factor goes up exponentially when you start adding girls into the fray.

Of course, Eric is either right there in the middle of the action (much to his sister's chagrin) or else he's complaining to me that the girls are "way too giggly".

I know that I was NEVER like this when I was a kid. Well, OK, maybe not like this most of the time. Well, only when I had ... OK, we were giggly also. I remember sleepovers with Lindsey, Michelle and Joni that got pretty out of hand. (Of course, out of hand for sixth grade meant we mixed Dr. Pepper, Coke, Sprite and Orange soda and dared each other to drink it!!! Shocking! Ah, memories! (Well, we did, one time, raid mom's wet bar and drank the Banana Liquor and the Creme de Menthe. ick.)

Earlier today, Eric and I went to Vertical Endeavors with his Cub Scout pack. This is, for those of you not from St. Paul, a climbing gym. What is that, you may ask? Well, have you ever heard of rock climbing? Ever seen a rock climbing wall? Well, this is an entire BUILDING of rock climbing walls. It is way cool! I even harnessed up and did some climbing, tho I never QUITE made it to the top. I'm not sure if it is better to blame my lack of physical prowness/strength or the fact that I "looked down" and got scared. Either way, no dice on the top for me.

Eric LOVES climbing, by the way, and he is GOOD. I can't believe how easily he scampers up the walls - reaching for the holds that, for me, seem way too far from each other to possibly grab. Well, today, it was a bit much for him. His hemoglobin levels are way down, so after the first climb, he was a little shaky. By the second climb, he was exhausted. He nearly fell asleep while waiting for me to finish up and unharness. Poor punkin. When his counts come up, we'll have to try again.

Oh, and no pix this time. My camera's batteries are dead. Bummer.

So, what's up with Eric's next treatment, you ask? Well, we are scheduled for an 8:30 am visit to the Hem/Onc clinic on Monday. At that point, we'll check his blood counts. He has to have a platelet level of at least 75,000 to start chemo. If that happens, then (yeah) we get to start chemo on Monday in the clinic. If his platelets are still too low (on Friday, they were only 43,000), then we WON'T do chemo on Monday. Instead, we'll check his counts again on Wednesday or Thursday. If counts are good then, then we'll start chemo.

The unfortunate thing about this chemo is that it is the 5-day chemo again of Ifosfamide and Etoposide and Mesna. That means if we don't start on Monday, Eric (and I) get to stay Inpatient at the hospital for 5 days. Not that I don't love the hospital, but, as I've said before, I REALLY don't love the hospital. Luckily, Eric will get IV fluids with Zofran and for this chemo, he doesn't get too sick. He usually only pukes once or twice and he doesn't get the terrible leg cramps or the "crazies". He does, however, get really twitchy and needs Ativan to sleep.

The true issue, though, is that Mike is still in China. The inpatient thing proves to be problematic with things like, well, my daughter. And my pets. I would assume that Katy probably won't want to stay with anyone else, but I might be able to con one of her friend's parents to let her stay with them for a night or two. (School night, tho - bad news). Or, maybe I can get my friend, Lisa, to stay here. She's done that before. Or, maybe I'll just take her to the hospital with me and she can sleep on a cot and I'll drive her to school. Oh well, it is a hurdle we've had to jump before, so this is all less stressful that it could be otherwise.

Hmmmm, what else is going on? Well - we went scrapbookin' last night. But I just wasn't into it. It was nice to be with friends, but I wasn't feeling creative. I just huddled in a corner with my bottle of wine and chatted with Lisa when she was done with all of her "Basketball Mom" duties. This morning (as I was nursing a slight headache ), I wondered if the wine was really a wise idea. I mean, none of the other ladies were drinking. And I bet none of them had headaches this morning. Hmmmmm.....

Oh, yeah, Eric did get a bloody nose last night at scrapbooking. A real gusher! I was kind of nervous about a potential trip to the ER, but it did end up slowing after about 5 minutes and stopped within 30 minutes or so. Of course, since ER trips are also nothing new to us, I was more worried about whether Eric managed to make it to the bathroom without getting blood all over Lisa H's carpet! Somehow, I wonder if I've become a bit jaded? Kind of like how I can clean up puke in between bites of a sandwich. Ah, the life of a cancer mom....

Oh, Hair: When we went to California for Christmas, Eric's chemo was delayed for two extra weeks, making it 5 weeks between chemos. Well, his hair started to grow back during that time! As you can see in the pix above. Well, the last round of chemo is catching up again and he's losing all of that nice fuzz on his head. The bummer thing isn't the hair on his head that he loses - it is the fact that he is losing his eyebrows and eyelashes again. Somehow, it just makes him look that much, well, different than others. I've offered to use makeup, but he's not going for it. Well, we'll just have to put up with it, eh? Maybe we'll start a new trend. (Most of those Hollywood chicks pluck their eyebrows so much, they don't look like they have any anyway!) Good thing Eric's not too vain.

Eric is currently tormenting Katy and her friends. Even a cancer kid is a little brother, huh? I guess I'd better start herding the beasts to bed (kids, dogs, cats, fish). Then I can collapse myself. (Oh, I'm proud of myself. No ALIAS today! Maybe now I can have some "non-spy" dreams!!!!)

Take care,
Kasey


P.S. Take a look in the Guestbook! Thanks to our friends from "Lost" for signing! Eric's pretty psyched that Hurley (Jorge Garcia) and Shannon (Maggie Grace) know who he is now! Here is a pic of the two of them at the Golden Globes: Maggie and Jorge Of course, when we told Mike this evening, he said, "I go to China and you start e-mailing movie stars, huh?". You bet! This'll keep him on his toes now! Ah, if only I can get Dom's signature . Oh, I mean, if only ERIC can get Dom's signature...

Thursday, January 27, 2005 8:05 AM CST

Good Morning!

I had some really bizzaro dreams last night - I'm thinking that I have been watching WAY too much Alias and LOST on TV. However, news first...

Eric is home and has been all week. He's feeling OK, but his counts from Monday are pretty low and there is lots of illness running around the schools, so I'm keeping him home. Why tempt fate, eh?

Counts from Monday:
Hemoglobin: 7.5 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 18,000 (normal is above 150,000; transfuse < 10, 000)
White Blood Cells: 3100 (normal is 5,000 - 12,000)
ANC: 2200(Normal is 2500, take precautions <1000)

Yeah, his White Cell count and ANC are pretty high, but that is because he is getting G-CSF (Growth Colony Stimulating Factor) - also known as Filgrastim. This is the stuff that "kick starts" the bone marrow into production of white cells. However, when Eric's WBC and ANC become normal, we have to take him off of the G-CSF and then the WBC and ANC drop again. It is like his body becomes slightly dependant upon the G-CSF and when taken off, it has to learn how to make white cells on its own again. Anyway, last night was his last day of G-CSF, so his counts will be dropping in a day or so.

At school on Monday, the nurse told me they had 80 kids out sick!!! Out of a school of 250, that's a lot of kids, and some of those illnesses were confirmed influenza. This can be deadly to cancer kids, so I'm not taking any chances. I know Eric got the flu shot, but that doesn't mean that the strain going around is the same one he was vaccinated against. So, no school.

Well, even if his white counts HAD been high enough, I'm still not sure I'd want him at school. His hemoglobin is very low (not the lowest ever, but still). Normally, Eric would have gotten a red cell transfusion when his HGB is 7.5, but for whatever reason, the doc said NO this time. Also his platelet count is low - not technically low enough for transfusion, but he's been transfused before when he's had these levels. But, once again, ho dice on the transfusion. Not sure why, but Dr. Slomiany is very conservative on the medical intervention this time. Maybe because there IS so much ick going around. Who knows if he'll catch something from the transfusion?

Of course, that is a constant fear of mine. What if Eric picks up some "AIDS-like" thing from the blood supply. Something that's never been identified before? He's had so many transfusions in his life - I've totally lost count. It is scary to be so dependant upon the bodily fluids of total strangers. I mean, I don't run up and make out with total strangers (beyond the social no-no, I'd worry about germs), yet we are giving Eric someone else's BLOOD! Scary.

Anyway, with the low hemoglobin, Eric's energy level is pretty low. On Tuesday, he said he was feeling dizzy whenever he'd stand up. So, I've encouraged him to sit a lot. He did do a TON of reading. On Tuesday, he read for 6 hours!!! He also had a tutoring session on Tuesday and took a math test - so I'm so proud of him!

The other thing is that Eric has been running a low-grade fever all week. He's been about 99 F, which is about 1 degree higher than norm. Not that this is really anything to worry about, but still... I hope it doesn't become more.

Katy hasn't been feeling very well either this week. She was home on Tuesday and Wednesday with a slight stomach virus. Not enough to really feel bad, but enough to have to spend lots of time the bathroom. (She's gonna kill me for telling you this!!!) Today she's finally feeling better, so I convinced her to go to school so as not to get TOO far behind in he homework. She really fought me on this, but I promised a trip to Coffee Cottage for breakfast and that seemed to win her over. I really think part of her reluctance to go to school is that she knows that Eric and I are home and she doesn't want to miss out on all the "fun". I keep telling her that Eric doesn't get to do fun things like computer games, TV, Playstation - just read or play quietly. I then do all sort of "fun" things like bills or taxes or clean toilets, but still, I don't think she totally believes me.

Yesterday WAS pretty exciting, tho. OUR NEW FURNITURE ARRIVED! Yeah! The guys were here at 8:30 am - I was expecting them a 9 am, so I wasn't totally ready for them. At least I was showered and dressed! (They were very cute guys, so I'm REALLY glad I wasn't looking too skanky). They brought the furniture in and set it all up for me - but those cute boys disappointed me. They moved the old couch into the front room, but wouldn't take it downstairs to the basement for me. Said something about policy. I even explained that Mike was out of town, but no. I guess chivalry is truly dead, eh? Oh well, I'll get one of my friends to help me out. We women can handle it - we'll show those wimpy boys, eh?

I just got a call from Children's home care with Eric's lab results from last night's blood draw:
Hemoglobin: 7.8 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 38,000 (normal is above 150,000; transfuse < 10, 000)
White Blood Cells: 4400 (normal is 5,000 - 12,000)
ANC: 3400(Normal is 2500, take precautions <1000)

So, Eric's on the path to recovery. I'm still concerned about his low hemoglobin. Once again, not high enough to transfuse, but enough to make him feel icky. At least I don't have to worry too much about the super low platelet count. The platelets cause clotting, so if they are low, he could, theoretically, bleed to death from a bloody nose. The concern, of course, is from him hitting his head. That could cause uncontrolled bleeding in his head that we can't see. That would also be bad. Anyway, no worries now.

As for my dreams - they are starting to fade now. Funny how that works, huh? I just remember looking through a house I wanted to purchase - but it was really old and needed to be fixed up. I went to the bank to get a loan, but I kept waiting in line and waiting and waiting. Then the spy part started. I saw "enemies", so I had to jump out of line and there was lots of chasing, gunshots, action, etc. as first the spies chased me and then I chased them. This all happened in the back hallways of the bank, so none of the customers knew what was going on. Eventually, I won - killed the bad guys - and ended up BACK in line to wait for my loan. When I finally got up to the window, they closed it because it was 5 pm. They told me I had to come back tomorrow! I was pretty put out because I'd just saved everyone's life and they were making me come back tomorrow! But, I couldn't tell them that, because I was undercover. I was going to complain to the manager when I woke up. Once again, I think I've spent WAY too much time watching Alias in the last few days. (Katy and I have watched ALL 24 episodes of the 1st season on DVD and have seen about 4 episodes of the 2nd season. Of course, it was on last night on regular TV, so we saw that one as well). I vaguely remember that there were people I knew in my dream as well (Doug, Angie, Lisa B, Lisa K). I think they were either the new neighbors at the new house I was going to buy or they were in line with me at the bank. The bank manager turned out to be Brett Y - an old grade school / high school classmate of mine. I haven't thought of him for years! Our parents used to be friends when I was a kid. Odd how dreams work, huh?

Have a nice day!
Kasey

Thursday, January 27, 2005 8:05 AM CST

Good Morning!

I had some really bizzaro dreams last night - I'm thinking that I have been watching WAY too much Alias and LOST on TV. However, news first...

Eric is home and has been all week. He's feeling OK, but his counts from Monday are pretty low and there is lots of illness running around the schools, so I'm keeping him home. Why tempt fate, eh?

Counts from Monday:
Hemoglobin: 7.5 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 18,000 (normal is above 150,000; transfuse < 10, 000)
White Blood Cells: 3100 (normal is 5,000 - 12,000)
ANC: 2200(Normal is 2500, take precautions <1000)

Yeah, his White Cell count and ANC are pretty high, but that is becausee he is getting G-CSF (Growith Colony Stimulating Factor) - also known as Filgrastim. This is the stuff that "kickstarts" the bone marrow into production of white cells. However, when Eric's WBC and ANC become normal, we have to take him off of the G-CSF and then the WBC and ANC drop again. It is like his bode becomes slightly dependant upon the G-CSF and when taken off, it has to learn how to make white cells on its own again. Anyway, last night was his last day of G-CSF, so is counts will be dropping in a day or so.

At school on Monday, the nurse told me they had 80 kids out sick!!! Out of a school of 250, that's a lot of kids, and some of those illnesses were confirmed influenza. This can be deadly to cancer kids, so I'm not taking any chances. I know Eric got the flu shot, but that doesn't mean that the strain going around is the same one he was vaccinated against. So, no school.

Well, even if his white counts HAD been high enough, I'm still not sure I'd want him at school. His hemoglobin is very low (not the lowest ever, but still). Normally, Eric would have gotten a red cell transfusion when his HGB is 7.5, but for whatever reason, the doc said NO this time. Also his platelet count is low - not technically low enough for transfusion, but he's been transfused before when he's had these levels. But, once again, ho dice on the transfusion. Not sure why, but Dr. Slomiany is very conservative on the medical intervention this time. Maybe because there IS so much ick going around. Who knows if he'll catch something from the transfusion.

Of course, that is a constant fear of mine. What if Eric picks up some "AIDS-like" thing from the blood supply. Something that's never been identified before? He's had so many transfusions in his life - I've totally lost count. It is scary to be so dependant upon the bodily fluids of total strangers. I mean, I don't run up and make out with total strangers (beyond the social no no, I'd worry about germs), yet we are giving Eric someone else's BLOOD! Scary.

Anyway, with the low hemoglobin, Eric's energy level is pretty low. On Tuesday, he said he was feeling dizzy whenever he'd stand up. So, I've encouraged him to sit a lot. He did do a TON of reading. On Tuesday, he read for 6 hours!!! He also had a tutoring session on Tuesday and took a math test - so I'm so proud of him!

The other thing is that Eric has been running a low-grade fever all week. He's been about 99 F, which is about 1 degree higher than norm. Not that this is really anything to worry about, but still... I hope it doesn't become more.

Katy hasn't been feeling very well either this week. She was home on Tuesday and Wednesday with a slight stomach virus. Not enough to really feel bad, but enough to have to spend lots of time the bathroom. (She's gonna kill me for telling you this!!!) Today she's finally feeling better, so I convinced her to go to school so as not to get TOO far behind in he homework. She really fought me on this, but I promised a trip to Coffee Cottage for breakfast and that seemed to win her over. I really think part of her reluctance to go to school is that she knows that Eric and I are home and she doesn't want to miss out on all the "fun". I keep telling her that Eric doesn't get to do fun things like computer games, TV, Playstation - just read or play quietly. I then do all sort of "fun" things like bills or taxes or clean toilets, but still, I don't think she totally believes me.

Yesterday WAS pretty exciting, tho. OUR NEW FURNITURE ARRIVED! Yeah! The guys were here at 8:30 am - I was expecting them a 9 am, so I wasn't totally ready for them. At least I was showered and dressed! (They were very cute guys, so I'm REALLY glad I wasn't looking too skanky). They brought the furniture in and set it all up for me - but those cute boys disappointed me. They moved the old couch into the front room, but wouldn't take it downstairs to the basement for me. Said something about policy. I even explained that Mike was out of town, but no. I guess chivalry is truly dead, eh? Oh well, I'll get one of my friends to help me out. We women can handle it - we'll show those wimpy boys, eh?

I just got a call from Children's home care with Eric's lab results from last night's blood draw:
Hemoglobin: 7.8 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 38,000 (normal is above 150,000; transfuse < 10, 000)
White Blood Cells: 4400 (normal is 5,000 - 12,000)
ANC: 3400(Normal is 2500, take precautions <1000)

So, Eric's on the path to recovery. I'm still concerned about his low hemoglobin. Once again, not high enough to transfuse, but enough to make him feel icky. At least I don't have to worry too much about the super low platelet count. The platelets cause clotting, so if they are low, he could, theoretically, bleed to death from a bloody nose. The concern, of course, is from him hitting his head. That could cause uncontrolled bleeding in his head that we can't see. That would also be bad. Anyway, no worries now.

As for my dreams - they are starting to fade now. Funny how that works, huh? I just remember looking through a house I wanted to purchase - but it was really old and needed to be fixed up. I went to the bank to get a loan, but I kept waiting in line and waiting and waiting. Then the spy part started. I saw "enemies", so I had to jump out of line and there was lots of chasing, gunshots, action, etc. as first the spies chased me and then I chased them. This all happened in the back hallways of the bank, so none of the customers knew what was going on. Eventually, I won - killed the bad guys - and ended up BACK in line to wait for my loan. When I finally got up to the window, they closed it because it was 5 pm. They told me I had to come back tomorrow! I was pretty put out because I'd just saved everyone's life and they were making me come back tomorrow! But, I couldn't tell them that, because I was undercover. I was going to complain to the manager when I woke up. Once again, I think I've spent WAY too much time watching Alias in the last few days. (Katy and I have watched ALL 24 episodes of the 1st season on DVD and have seen about 4 episodes of the 2nd season. Of course, it was on last night on regular TV, so we saw that one as well). I vaguely remember that there were people I knew in my dream as well (Doug, Angie, Lisa B, Lisa K). I think they were either the new neighbors at the new house I was going to buy or they were in line with me at the bank. The bank manager turned out to be Brett Y - an old grade school / high school classmate of mine. I haven't thought of him for years! Our parents used to be friends when I was a kid. Odd how dreams work, huh?

Have a nice day!
Kasey

Monday, January 24, 2005 12:55 AM CST

Happy Monday!

Hi! It is Girl Scout Cookie Time! If you are interested in placing an order with Katy, e-mail me at kcrueg@comcast.net. Katy's troop is using the money they year this year to make Goodie Bags for the kids who are staying at Children's Hospital - St. Paul over any holiday. So far, they've made Halloween and Christmas bags and are hoping to do Valentine's Day and Easter also!

Last week was fairly non-eventful around here. That's good! No one is sick at all!

Let's see if I can remember it all...

Well, Mike is still in China, so we got a few e-mails and phone calls from him. Sounds like he is keeping pretty busy. Over the weekend, he and three other MN guys (3M'ers and one non-3M'er who Mike knows) travelled to Beijing from Shanghai. They had a busy weekend with lots of tours (saw the Great Wall, the Forbidden City, etc.) and eating. They also get "traditional Chinese foot massage" as well! Hmmmm, when Mike gets back, he'll have to demonstrate, eh?

Monday, there was NO SCHOOL for the kids, so they had a good time staying home. Tuesday, Eric still wasn't feeling great, so he stayed home again - still feeling the effects of the chemo. But, he slept really late, so he was feeling OK in the evening. Since he was feeling well, Eric and I went to Eric's Cub Scout pack meeting. He was a little moody at the beginning of the meeting - he was worried that the kids weren't letting him play tag, so he was being sensitive and locked himself in the bathroom. However, after we got that all straightened out - turns out, Charlene had brought Eric a little stuffed animal puppy - he was so taken aback - he just loved it - well, it all worked out. Eric got together with his den-mates and they had a great time. It snowed a little on Tuesday night also, so driving home was pretty cool as well.

On Wednesday, Eric was feeling pretty good, so he and I went to school for a special treat - his class had a Magician visit the class! Her name is Suzanne and she was awesome!!! Lots of card tricks and coin tricks. I know I was amazed! She used lots of kids as "assistants", so most of the class got to participate! Afterwards, Eric was still feeling pretty good, so he stayed at school until around 2:30 or so. Then he said his stomach hurt and he was tired, so I came and picked him up.

Wednesday night, Eric was still pretty pumped up about school, though, and he DID HIS HOMEWORK! I think it is a first that he voluntarily got it out and finished it. Unfortunately, he hasn't been to school since to turn it in, but it is the thought that counts, huh?

On Thursday, Eric was exhausted, so I just let him sleep all day. I picked up some new educational software, so after Eric woke up, I let him play the new educational games on the computer. He did GREAT! Eric also had his blood counts taken, as they were pretty low:

Hemoglobin: 9.0 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 23,000 (normal is above 150,000; transfuse < 10, 000)
ANC: 150 (Normal is 2500, take precautions <1000)

Since his ANC was low, it is just as well that he didn't go to school on Thursday, so he could avoid catching the yucky flu-like thing that is going around the school! I guess on Monday, there were nearly 60 kids out with it from Eric's school. I'd just feel awful if he got sick from that!

Thursday evening, Mrs. Lincoln, Eric's tutor came by and she and Eric worked pretty much non-stop for nearly 2 hours! They were so quiet that I forgot they were upstairs working! Wow - Eric has come SUCH a long way since last year! I remember how it was a HUGE struggle to get him to take his medication. He also used to hide whenever Mrs. Lincoln would show up. Then the first 1/2 hour or so of every session would be him fighting the learning process. He is such a different kid. I think because he hasn't been getting much tutoring in the last several months - he's just felt too bad - it has made him realize that he really kind of misses learning! Anyway, he's doing great! They finished a reading test and started Chapter 7 in Math.

Friday, Katy and Eric didn't have any school, so we went to Target to spend some Christmas money. Katy is the sweetest thing! She used her money to buy a cute pair of earrings for me. She wanted me to have something pretty! Then she bought some Krispy Kreme donuts - yum! Eric used his money to buy the new Zelda game for the Game Boy Advance. He saw it advertised and really wanted it. He was considering a new Nintendo DS, but the $150 price tag deterred him (as it did me!)

Then, we went home and Eric played his new game almost non stop on Friday, Saturday and Sunday!!!! It is just as well - his energy level was low and I would have worried about him going outside with his low platelet count - it is too slippery and if he'd have fallen or gotten cut, it would have meant a trip to the ER - I just wasn't into that this weekend.

Friday, Katy and I went over to our neighbor's house. Angie was having an impromptu party - she was testing some new appetizers - and I was more than willing to be her taste tester! Angie is a good cook! Add a little wine and a couple of other women, and you have a party. Also, Friday was a nice, snowy day. It was just MADE for watching the snow fall from inside a nice warm house!

By the evening, the snow had fallen deeply enough that I decided to do some snowblowing a clear the driveway. I had a good time running the snowblower, so after I finished my driveway, I cleared Angie's. Then I was still having such fun with the snowblower, that I cleared Lisa's drive!

Well the next morning, apparently, it continued to snow, because you'd have never known I had done any snowblowing at all! The driveways were all FULL of snow. So, I got to have some more fun with the snowblower. It was a gorgeous, sunny day, so I wasn't upset at all.

Saturday afternoon, Katy and Jackie, our neighbor, played in the snow. They built a snowfort in the front yard and had a great time.

Eric, as I said, stayed inside and played his game all day. I spent some money. I talked with Mike and told him I found some furniture I'd like to purchase, so on Saturday, I did just that. Kind of freaked me out, but I'm OK with it now. The new furniture will arrive on Wednesday! I'm so excited!

Saturday evening, Angie & her kids came over and we watched a bunch of episodes of the 1st year of Alias. Alias is one of Angie's favorite TV shows, so she's got the DVDs of the series. We watched like 4 hours worth and ate pizza for dinner. Then, after they went home, Katy and I watched 4 more episodes!

Then, Sunday, Katy and I watched Alias ALL DAY LONG! It was great! Of course, there are like 24 episodes in the first season, so we didn't finish, but we did get to episode 16 or so. It is great! I love a good spy tale! It is like of like James Bond, but with a kick-ass girl for a lead character! She's a little less self-assured than old Mr. Bond, tho. I thought it was funny, tho - they had Roger Moore (Mr. Bond #2) as a guest star in a couple of the episodes! He he!

Well, today, Monday, Eric's not feeling hot. He's a little warm - he's got a temp of about 100F. He's also got a sniffle and is feeling a little dizzy. I'm sure his counts are low still. The nurse just left with his blood, so we'll get results in a couple of hours or so. In the meantime, he's been reading a lot today! Almost non-stop for 3 hours! That should get some points with the teacher, eh?

Well, time for lunch...

Take care,
kasey

Monday, January 17, 2005 9:56 AM CST

Good Morning - Happy MLK Jr. Day! The kids are psyched because there is NO SCHOOL today. Well, for Eric, that is the norm, but for Katy, she's thrilled. Of course, her attendance is kind of low also...

Last week, Eric started WEEK 19 of this latest chemo protocol. This time it was Ifosfamide and Etoposide every day for 5 days. We did this in the clinic this time because it is one of the rare occasions that chemo started on a Monday. If it had started on any other day, it would have meant that we'd have gone inpatient.

Well, on Monday morning (like 1 am - EARLY), Katy woke us up because she was throwing up. ICK! She was stuffed in the head, achy, feverish, coughing, etc. etc. etc. All the classic flu symptoms! This is worrisome to us because the flu can be deadly to cancer kids. Of course, Katy had just had a very busy weekend...

Flashback to Friday, Jan 7, 2005... Katy's weekend was PACKED! She and the Ski Club went skiing at Trollhaugen after school on Friday - from 2:30 pm to 10:30 pm. She was exhausted from that! Then, on Saturday, she woke up a little later than usual, but not much later, but felt "good". She had her Youth Advisory Council meeting at Children's Hospital - Minneapolis in the morning. The group held their meeting and then hosted a pizza party for the kids and their parents who were inpatient in Minneapolis. It turned out very nicely! The kids gave everyone a beanie baby as well!

Katy had a very nice experience with one little girl who was inpatient. She looked to be about 6 years old or so, but was completely non-verbal and had some serious facial deformities. She also had a tracheotomy and was being wheeled around the floor by her mother. The OLD Katy would have been kind of freaked out by this and would have wanted to avoid the girl, but the NEW Katy (i.e. ever since Eric was dx) really had learned a lot and has grown as a person. She trotted right up to the little girl and talked with her and gave her a beanie baby that she though the girl would like. Well, she was rewarded with a HUGE smile and happy noises! Katy was pleased that she was able to brighten the girl's day and she talked about that experience for several days!


Back to Katy's hectic weekend...
So, after the YAC Meeting at the hospital, Katy got together with Jackie, our next-door neighbor.

While they played, Eric and I went to Eric's friend, Jacob's house for an ice skating party! The skated and sledded and tromped in the snow! It was a blast! I'd forgotten what fun winter can be if you ignore the cold! I also met Hardt's mom at the party. Hardt is another one of Eric's school friends. All in all, it was a good time.

Mike and neighbor Jason cleaned off the pond and resurfaced the ice on the skating rink while Eric and I were at the party and in the evening, all the neighbor kids were outside on the rink. Katy ended up spending the night with Jackie, so one more reason for Katy to be tired, eh?

On Sunday, Katy and Jackie went "rock climbing" at a place here in town called "Vertical Endeavours" - it is a climbing gym - very cool and fun! THEN on Sunday, it was the BIG GAME! Katy & Jackie watched the Vikings & the Packers duke it out in the playoffs! YEAH VIKES! Of course, Katy fell asleep during the game - her weekend finally caught up with her - and, it appears, that a virus did as well.

Well, Katy did end up getting sick - she was out of school until this last THURSDAYS! Four days out of middle school equals LOTS of homework. So, this weekend, I wouldn't let her out of the house until homework was done. She fought it, of course, but in the end, finished it early on Saturday. So, last night, she and her friend Charlotte got to have a sleep over and today they are celebrating the No School day by watching a movie.

Luckily, Eric did NOT get sick. Maybe it was because I started getting fanatical about cleaning surfaces around the house and INSISTING upon everyone washing their hands about 20 times per day. Or maybe it was because Eric has had the flu shot (the rest of us didn't because when there was a shortage, we "didn't qualify" and I haven't tried again since). Or maybe it was because Eric and I were pretty much out of the house all day at the clinic - Who Knows?

This weekend has been pretty mellow. Chemo last week went well. Eric didn't really vomit at all. He has been hooked up to IV fluids continuously since last Monday and those fluids are spiked with Zofran, so that REALLY helps prevent vomiting. Eric was still pretty perky up thru Wednesday, actually, then the chemo started catching up with him and his energy level has been low since Wed. evening. The clinic visits for chemo were long days (typcially about 5-6 hours all total), but we kept busy with Game Cube, Game Boy, reading and building a model of the solar system. Eric's still not done with it, but next time he's in the clinic, we can finish it off! Then, this weekend, Eric's still on IV fluids (he's REALLY getting sick of being hooked up to a backpack filled with 1/2 gallon of water, but oh well!) and we have spent the weekend playing with Legos!

I dug out the tubs of Legos - Eric hasn't played with them in a LONG time - at least not ALL of them. I had forgotten HOW MANY Legos we have! He's putting together his pirate ship kit. Originally, it took Eric about 4 days to complete this one. He's a little faster, but it takes longer to dig through the PILES of legos to find the ONE piece he needs. Even as I write this, Eric is asking me to help him find the Ship's Wheel!

For those of you out-of-towners, winter is here with a vengence. It is COLD! Last night, it got down to -16 F. BRRRRRRR!.

Today, Eric is having a nurse visit to get a blood draw. We'll see if he needs a transfusion, which he'll probably get tomorrow.

Well, I'd better help look for that piece!

-Kasey

Friday, January 7, 2005 12:41 AM CST

Happy New Year! I hope 2005 finds you happy and healthy!

We returned from Christmas break in one piece, thank goodness! Our vacation was a complete success! Before I go into that, I thought I'd let you know that Eric's chemo for this week was cancelled. So we are NOT in the hospital, as planned. Eric's ANC was too low to proceed. This is really quite puzzling, since we delayed chemo by 10 days as it was, but who knows how the body works. So, Eric's hemoglobin and platelets are fine, but he doesn't have enough of a certain type of white blood cells called neutrophils to proceed. The neutrophils are the "illness fighters" of the white blood cell family. Anyway, we are set to get blood counts done some time today and if everything is OK, then Eric'll get chemo in the clinic for 5 days next week. No hospital visit at all! Yeah!

I am really glad that I'm not spending the night in the hospital this week! I had a lovely vacation and all, but I'm glad to be in my own home (even if it is still covered in Christmas decor - darned elves didn't clean up the stuff while I was gone!). I'm just thinking that I'd have been fairly miserable to be gone this week. Oh, and Eric as well, eh?

So, it is good - Eric has been to school twice this week! He attended ALL DAY on Wednesday - and even came home with an invite to a party this weekend! That is really good for his morale. I think at times he prides himself on his independence, but it is mostly for show and does enjoy being liked by other kids. So, he is set to hang out on Saturday with some of his friends! Thursday (yesterday), he was EXHAUSTED from being at school all day on Wed! I tried to wake him up, but he wouldn't wake up - just kept telling me that he was tired and wanted to sleep. Well, I let him sleep and sleep and sleep! He finally got up at 3 PM! What a power nap, eh? I'm envious of his abilty to sleep that long, really! I don't think, even in my teenage years, that I EVER slept that late! The amazing thing is that he also managed to go to bed at a reasonable time last night! I guess he needed it. So, today he is back at school and I am working away in an empty house. Well, not empty - still have all those decorations I spoke of earlier! (STILL no elves to clean up after me - bummer).

So, vacation details!

Well, in general, it was pretty cloudy in San Diego. We kind of chose to visit during the one week of the "rainy season" - not that it was constantly raining or anything, but it wasn't quite as sunny warm as it usually is there. We rode on Sun Country Airlines (not our usual NW Airlines), but they have a nice service and clean planes, so it was good. We stayed from the 24th thru the 1st at a Doubletree Hotel in San Diego's Mission Valley. It was nice, but there were a FEW other guests there as well. There was a swim team from New Jersey that was spending X-mas break at the hotel - using their outdoor pool for practices and their weight room for training. As it turns out, tho, I am a much earlier riser than students from New Jersey, so I never was in competition for the facilities. Also, during our week there, San Diego was host to the "Holiday Bowl" - Cal (Berkeley) vs. Texas Tech. The hotel was full for a couple of nights since it is just down the street from the stadium! It was fine, tho - kind of added an element of festivity to the stay!

My poor Uncle John & Aunt Jan & Cousin De - they are all rabid Cal fans (alumni - of course). And Cal was kind of demolished. It was a sad day on Thursday. <> (I think my stepdad was secretly rooting for Texas Tech, so he was rather giddy about Cal's loss. At least it added an element of humor to the day).

So, for fun, we did manage to make it to the San Diego Zoo (where we met up with Pam, our "fun specialist" from our tour this last summer), the San Diego Wild Animal park (where we waited next to the tiger for about 1/2 hour while they fixed the tour shuttle as it had broken down), Mission Beach (twice) and the Belmont Park roller coaster, Point Loma and the Pt. Loma lighthouse, Old Town (where I had a medium margarita - which was quite enough to get me both shaken and stirred, thank you!), and (of course) Disneyland! We took about a zillion pictures, so I'll put a few up for you to see (see photos sections).

We had a very nice Christmas also. We ate at the hotel with my Grandmother, Chris (her caregiver), Mom, Pete (stepdad), Jan, John, De, and us. It was a nice meal and NO DISHES to do afterwards! Then we opened gifts at my gramma's house. Nothing too terribly elaborate (except for the check from gramma to help pay for the trip - Thanks Gramma!). The kids enjoyed the opening of the gifts, as always! (We did our own Christmas at home before we left, so they got TWO christmases this year). At least this year I was a little more controlled on the X-mas spending - I have a bad habit of going a little crazy.

Generally, tho, it was a good time. There was a couple of night where it really rained and there was flooding around San Diego, so that was a bummer. And of course, the tsunami was all over the news - what an awful thing! Also, my Grandmother was having some problems with her high blood pressure, so were were kind of trying to make her rest, not get her upset, etc. I know she loves to see us all, but it is kind of stressful to have 9 people in your house every day! There was one minor incident with Eric and the TV and Gramma which lead to Eric running out of the house and "going for a walk" (i.e. we couldn't find him for 1/2 hour or so) which lead to tears, but everyone recovered.

The one thing I feel bad about is that I didn't go see my Dad's parents - my other grandparents. The kids have never met them - I've only seen them once since I was 18 years old. They live about 2 hours away from San Diego - Mike and I talked about going, but somehow, the end of the trip came and we never made it. I felt odd about leaving my one set of family to go visit the other set of family. I guess this is what comes from a nasty divorce, eh? I think it is a shame, too, for my grandmother - she continues to write me and send me pictures. Ah, guilt, guilt, guilt. Well, she does have numerous other grandchildren and great-grandchildren (I have 6 other cousins on my Dad's side - one of which, Katie, I have never met), so she does have SOME contact with grandkids. Anyway, that's my bad, guilt thing for this trip.

So, on Dec 31st - New Year's Eve - we stayed up until 10 pm (New Year's in MN) and then kissed everyone goodbye and went to bed. On Jan 1st, we packed up at the hotel and drove to the Disneyland Resort! I made reservations at the Disneyland Hotel - I have stayed there once before when I was a kid and wanted to relive the experience! It was really nice! The beds were great and the room was decorated with all sorts of cute Mickey & Tinkerbell stuff. We arrived early enough to get to the Theme Parks in early afternoon!

So, Jan 1st, we spent the day at Disney's California Adventure park. It is really nice! There is an awesome roller coaster called California Screamin'- looks like a giant wooden coaster, but really is steel and is a smooth ride! We also rode the Giant Ferris Wheel with the cars that slide around on tracks - it was kind of frightening for me, actually. We ALMOST got Eric on the Tower of Terror - but no dice. He made friends with a nice man named Ken who took him back around to the front and waited with him while Katy, Mike & I rode! We did get Eric on another mini-coaster called Mullholland Drive, tho! We all decided to pass on the Grizzly Mountain Splash ride - it was kind of cloudy and cold and the idea of being drenched wasnt' really appealing. We ate dinner that night with Goofy, Mickey, Chip & Dale at one of the Disney restaurants. It was a good time!

Day 2 was spent at the Disneyland Theme park. It was Sunday, so a little less crowded - lines weren't too bad, but we still used our FastPass to get the quick rides. Also, we had Eric's wheelchair, so we often times got right on the rides thru the handicapped entrance. That was REALLY nice when it started RAINING! Not pouring, really - just a nice, solid, drenching rain. We bucked up and paid for plastic ponchos and an umbrella. They worked well up until we rode the Autopia - where you drive cars - you know, when you sit in a car with an open top, the seats get REALLY WET! So OUR seats got REALLY WET! By this time, it was night and it was COLD! However, we did manage to find the Innovention Center, which is totally indoors, and dried off enough to go outside and enjoy the Matterhorn, It's a Small World and the Fireworks!

Day 3 (Monday) was our last day - we checked out of the hotel and went back to Disneyland for some last minute rides - we rode the Haunted House (which was decorated for Christmas!), Pirates of the Carribean (of course - our FAV ride!), Indianna Jones and the Matterhorn. Mike accused me of being a Disney junkie - and I really do think I am! So, this trip was nice - I got my fix! Now I can survive for a while.

The flight back was fairly uneventful. The plane was a little late, so we got home about 1am and to bed at around 2 am. Now you see why I was unenthused about needing to show up to Children's Hospital at 8 am to check into the hospital!

So, it was nice, but now it's over. I'm still in recovery mode. The suitcases are NEARLY all unpacked. Now I get to start planning for our trip to California in June! My cousin, De, is getting married in June in San Francisco! Katy is going to be a bridemaid (one of 7 or so), and Eric is going to be the ring bearer. I'm thrilled! I haven't been to San Franciso in forever, so it'll be nice to go back (I was born in the area and lived there until I was 7).

So, upcoming for us:
Next week - chemo for Eric - 5 days (Ifosfamide & Etoposide)
Jan 17-Feb 4: Mike's in China
Katy is going to play soccer again - well, go to a weekly soccer clinic.
Katy is in the school Ski Club - so nearly every Friday thru the end of Feb, she'll be skiing (maybe I'll join her sometimes!)
I'm working on the Childen's Hospital Family Advisory Council - which looks like it's going to lead to several other committees at Children's - should keep me busy.
Girl Scouts is still going strong for Katy & I, as is Cub Scouts for Mike & Eric!
Mid March, Mike goes BACK to China!
Spring Break is the last week in March this year for us. I still haven't made any travel plans - but maybe I can get us a deal to Hawaii (because I just know that Mike WANTS to spend more time travelling - he just doesn't know it yet!)

I still need to review Eric's scan results with the Hem/Onc docs to figure out if we are doing surgery or radiation. I'll keep you all posted...

Happy New Year!
Kasey

Thursday, December 23, 2004 10:23 AM CST

Hi! We finally got results from Eric's scans!

Basically, no change.

CT results: There are two very small spots on Eric's lungs that were there last time and haven't changed at all.

MRI results: Abdominal tumors still the same. The stent is doing it's job and Eric's kidney is pretty much back to normal.

No new tumors noted anywhere! Yeah! So, the chemo is keeping everything in check, but doesn't seem to be actually reducing or killing the cancer cells/tumors. When we get back from CA, we'll find out more about if we are going to do radiation, etc.

At this point, however, I'll take whatever good news we get!

Eric's Holiday Message to you all:
"I wish for you all to have a Happy New Year and DON'T GET CANCER!"

Katy's Holiday Message to all:
"Happy Holidays and Happy New Year!"

Also - THANK YOU to the wonderful Chemo Angels! They sent gifts to us and they were all wonderful! It is great to have such amazing people in our lives!
Here is a link to the Cancer Warriors web site:
http://www.cancerwarriors.org/

Have a Very Happy Holidays!

-Kasey

Tuesday, December 21, 2004 3:10 PM CST

Hi! Eric's feeling much better these days - enough to actually GO TO SCHOOL this week. Well, never mind that the week is only 2 days long - that's not gonna stop Eric! He's committed to standing outside the doors all week long - peering inside - yearning to learn. Well, maybe not... But, still, Eric did go to school yesterday and today. You can't blame him, party day and all...

So, lots happening:
Thursday we participated in the Adopt-A-Room workshop in Minneapolis - which was great fun! I felt bad because he was coughing and hacking away, but he did OK. He did fall asleep in the car on the way home, but there you have it - it was tiring.

Friday, we all went skiing with Katy's 6th grade class - kind of a tradition, really, now. Eric did get out, but only did a few runs - his hemoglobin count was still low and his platelet count was still kind of low, so I wasn't thrilled with the idea of him skiing anyway. So, Eric stayed in the lodge at Trollhaugen. For anyone who TRULY skiis mountains, well, Trollhaugen ain't it. It really is a series of bunny hills, compared to Colorado, but it is fun anyway. And they did have a fireplace upstairs, so Eric snuggled in with a book and Mike, Katy & I spent some quality time in the cold. Yeah, I snowboarded, and you know, I'm getting better! I only really wiped out once - it was a doozy - I saw stars! - but no bruises on my backside this time! Yeah! It may be time for more lessons, tho, because yesterday in Eric's class, I was listening to these little 9 year old punks and their snowboarding adventures, "Yeah, it was cool, first I ground a 50/50 rail, then did a nosedive and ended with a ..." well, you get the picture. I don't even know what those ARE, let alone want to attempt them.

Saturday was pretty mellow (and sore). We went to a party at a friend's house in the late evening (6-9pm or so). It was fun to get out and chat with other adults! The kids were all hanging out together at the party, giving me free reign to drink red wine and eat shrimp and other party fare which is very unhealty and fattening. (I'm grumpy because I WAS losing weight until Saturday - then I seemed to have reversed the trend).

Sunday was "finish up X-mas shopping and wrapping" day. Mike took Katy out to shop for Eric and I took Eric out to shop for Katy. So, everything is prepped for the present opening on Thursday (Santa is coming early to our house). I'm bummed because I'm trying to finish some x-mas shopping on Amazon.com (gift certificates), but seem to be having technical difficulties.

Monday, Eric went to school, so I did "finish up x-mas shopping and wrapping" Take 2. I had a couple more things to get. All I can say is, I sure hope Thursday comes soon! I keep getting "just one or two more things" and soon will have purchased half of the Twin Cities!

Today, I was cranky. No reason why, really, just was. I think the DARK is getting to me. Thank goodness that TODAY is the day where the angle of the sun in the sky is at the LOWEST point and that after today, the earth does the thing I absolutely LOVE - start that journey back around the sun so that the Northern Hemisphere gets more of the radiation! (i.e. the days are going to get longer!) Also, the wind was friggin' COLD today - wicked cold! I was going to walk Katy to the bus and wimped out and drove her to school. Biting cold! I hear that on Thursday, the HIGH temp is going to be -2 F (with a -20 to -30 F wind chill). WHY DIDN'T WE MOVE TO HAWAII back in 1996 instead of Minnesota? I keep hearing "embrace winter, enjoy winter, and you'll be happy". Those people are just those who have snowboarded one too many times and hit their heads. Maybe if I keep snowboarding, I, too, will be damaged enough to think that winter is fun. Maybe...

So, upcoming events:
Tomorrow (Wed): Eric has blood test and MRI & CT. Hopefully we'll get results tomorrow - but the clinic is closed, so Doc Slo Bananas (Dr. Slomiany's nickname) is supposed to call us with results.

Thursday: X-mas in MN!

Friday: Fly to CA - stay there until Jan 3!. I might try to update from CA - supposedly we have internet in our hotel room.

Jan 4 (Tues): Go Inpatient for chemo. Just jump right in! We are delaying chemo for 10 days with this trip, so Dr. S wants to get it started ASAP - that is Eric's best hope, you know.

Well, I'm off to AAA office to pick up our tickets to Disneyland! While I'm near the mall, I may just pick up a few more last minutes items.... (help me!)

-Kasey


Oh, I thought this was rather funny. For those who know me, I'm an avid reader. Also, there are several important people in my life who are battling alcoholism. I'm not belittling their important battle, but have been accused of reading as being my own little addiction - so here is something I am copying (I didn't make it up - for the record):

LITERATURE ABUSE: AMERICA'S HIDDEN PROBLEM

SELF-TEST FOR LITERATURE ABUSERS

How many of these apply to you?

1. I have read fiction when I was depressed, or to cheer myself up.

2. I have gone on reading binges of an entire book or more in a day.

3. I read rapidly, often 'gulping' chapters.

4. I have sometimes read early in the morning or before work.

5. I have hidden books in different places to sneak a chapter without being seen.

6. Sometimes I avoid friends or family obligations in order to read novels.

7. Sometimes I re-write film or television dialog as the characters speak.

8. I am unable to enjoy myself with others unless there is a book nearby.

9. At a party, I will often slip off unnoticed to read.

10. Reading has made me seek haunts and companions which I would otherwise avoid.

11. I have neglected personal hygiene or household chores until I have finished a novel.

12. I have spent money meant for necessities on books instead.

13. I have attempted to check out more library books than permitted.

14. Most of my friends are heavy fiction readers.

15. I have sometimes passed out from a night of heavy reading.

16. I have suffered 'blackouts' or memory loss from a bout of reading.

17. I have wept, become angry or irrational because of something I read.

18. I have sometimes wished I did not read so much.

19. Sometimes I think my reading is out of control.

If you answered 'yes' to three or more of these questions, you may be a literature abuser.

Affirmative responses to five or more indicates a serious problem.

Once a relatively rare disorder, Literature Abuse, or LA, has risen to new levels due to the accessibility of higher education and increased college enrollment since the end of the Second World War. The number of literature abusers is currently at record levels.

SOCIAL COSTS OF LITERARY ABUSE

Abusers become withdrawn, uninterested in society or normal relationships.

They fantasize, creating alternative worlds to occupy, to the neglect of friends and family. In severe cases they develop bad posture from reading in awkward positions or carrying heavy book bags. In the worst instances, they become cranky reference librarians in small towns.

Excessive reading during pregnancy is perhaps the number one cause of moral deformity among the children of English professors, teachers of English and creative writing. Known as Fetal Fiction Syndrome, this disease also leaves its victims prone to a lifetime of near-sightedness, daydreaming and emotional instability.

HEREDITY

Recent Harvard studies have established that heredity plays a considerable role in determining whether a person will become an abuser of literature.

Most abusers have at least one parent who abused literature, often beginning at an early age and progressing into adulthood. Many spouses of an abuser become abusers themselves.

OTHER PREDISPOSING FACTORS

Fathers or mothers who are English teachers, professors, or heavy fiction readers; parents who do not encourage children to play games, participate in healthy sports, or watch television in the evening.

PREVENTION

Pre-marital screening and counseling, referral to adoption agencies in order to break the chain of abuse. English teachers in particular should seek partners active in other fields. Children should be encouraged to seek physical activity and to avoid isolation and morbid introspection.

DECLINE AND FALL: THE ENGLISH MAJOR

Within the sordid world of literature abuse, the lowest circle belongs to those sufferers who have thrown their lives and hopes away to study literature in our colleges.

Parents should look for signs that their children are taking the wrong path-don't expect your teenager to approach you and say, "I can't stop reading Spenser." By the time you visit her dorm room and find the secret stash of the Paris Review, it may already be too late.

What to do if you suspect your child is becoming an English major:

1. Talk to your child in a loving way. Show your concern. Let her know you won't abandon her -- but that you aren't spending a hundred grand to put her through Stanford so she can clerk at Waldenbooks, either. But remember that she may not be able to make a decision without help; perhaps she has just finished Madame Bovary and is dying of arsenic poisoning.

2. Face the issue: Tell her what you know, and how: "I found this book in your purse. How long has this been going on?" Ask the hard questions -- Who is this Count Vronsky?

3. Show her another way. Move the television set into her room. Introduce her to frat boys.

4. Do what you have to do. Tear up her library card. Make her stop signing her letters as 'Emma.' Force her to take a math class, or minor in Spanish. Transfer her to a party college.

You may be dealing with a life-threatening problem if one or more of the following applies:

* She can tell you how and when Thomas Chatterton died.

* She names one or more of her cats after a Romantic poet.

* Next to her bed is a picture of: Lord Byron, Virginia Woolf, Faulkner or any scene from the Lake District.

Most importantly, remember you are not alone. To seek help for yourself or someone you love, contact the nearest chapter of the American Literature Abuse Society, or look under ALAS in your telephone directory.

Not all those who wander are lost.
--------------
"He who does not study rhetoric will be a victim of it"
found on a Greek wall from the 6th Century B.C

Friday, December 17, 2004 0:45 AM CST

Check it out!!!

http://www.kare11.com/news/news_article.aspx?storyid=73056

Eric made the news!

He and I participated this evening in a new thing called "Adopt-A-Room" which was started by the Schepperles. Kaitlyn passed away from Leukemia in 2003, and Eric and Brian are in the same grade in school.

Thanks to the Schepperles for giving us a call! It was fun, but Eric was pretty tired. He is feeling MUCH better, but still coughing.

-K

Tuesday, December 14, 2004 3:23 AM CST

Update from yesterday:

Eric and I got to the Hem/Onc clinic yesterday around noon and we got home about 6 pm - yep, it was a long day and we just squeeked by - it was almost a long night! We were nearly admitted!

I was pretty sure we'd be going into the clinic yesterday when he and I first woke up. He was so pale - his green eyes were sunken and hollow, with purple smudges around them. His lips were practically blue. He was hungry, but he has mouth sores and a sore throat, so he was sitting at the table, sobbing into his breakfast cereal because he wanted to eat, but it hurt too much. At some point, he just crawled onto the couch and was yelling out, "God is making me suffer and I don't know why. I can't take it any more!" He was just so sad and ill. I just rubbed his back until the nurse came to take blood samples. He had a low-grade fever as well. It was no surprise when the clinic called an hour later to tell us to come in.

A busy day at the Hem/Onc clinic - we were the SEVENTH kid to be transfused yesterday. In addition, there was one more who was sent up to the floor for admission for transfusion. So, a total of EIGHT kids. Gads! I don't know if it is like this everywhere, but business sure is booming for the Hemotology/Oncology group here in St. Paul, MN! The last time we were admitted for chemo, there were 9 chemo kids. Most of last year, we were often the only chemo kid on the floor. Kind of sad, really.

So, Eric received platelets and red cells. His counts were as follows:

Hemoglobin: 6.6 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 13,000 (normal is above 150,000; transfuse < 10, 000)
ANC: 30(Normal is 2500, take precautions <1000)

His platelets weren't QUITE low enough to officialy transfuse, but since Eric has been having a tendence to get nosebleeds when his platelets are low, the docs are erring on the side of more rather than fewer transfusions.

Well, Eric has been running a fever off and on for a couple of weeks now - with a runny nose and cough. Yesterday, while being transfused with platelets, Eric melted down again. When the nurse took his temp, it was up to 101.1 F. At 101.5, you get admitted to the hospital. So, I calmed Eric down - I read "The Hobbit" to him (FIVE chapters!)and the doc sent him to X-ray to get films of his sinuses.

Guess what? He had a sinus infection!! (Big surprise for me - I've been telling them that for a week now!) So, after the platelet transfusion and the red cell transfusion, he got a dose of antibiotics.

Once again, I am happy for Children's Home Care and the Karuna hospice care. Ordinarily, any other child who is neutropenic (low white cells) with a fever needing IV antibiotics would be admitted, but because of "quality of life" issues with Eric - as in they want to make sure he has the best quality of life in the time he may have (and because they trust me), they sent us home, as per Eric's wishes. They sent IV antibiotics to our home and I'll administer via his Hickman over the next 4 days. Not that I don't LOVE the hospital (because, really, I don't), but it is nicer to be home.

Well, so Eric'll be home from school for at least 3 days - we are waiting for his white cells to recover and I'm not sending him there before he gets counts done again on Thursday. Too much flu and other yuck going around.

Then, next week, Eric'll have scans again. We'll be checking his lungs and abdomen to see how the treatment is progressing. Of course, that means I'll be an emotional wreck between now and then. Waiting for scans is always very trying. But, at least we have Christmas and our trip to CA to look forward to!!

We'll be leaving for San Diego on the 24th and will return on Jan 3 - a nice, long break in sunshine and warmth! We'll see my family and Disneyland and the Wild Animal Park and go to Casa de Pico for monster margaritas (tho only I get to have tequilla in mine) and see the ocean! yeah!

When we return, Eric'll have chemo again - probably starting on Jan 4. This time it is Ifosfamide and Etoposide for 5 days straight. We'll do like we did before - go inpatient for the entire 5 days and get "day passes" to escape for the day.

So, hopefully the antibiotic and blood products (Thank You again to all of those who donate blood and platelets!!!) will help Eric to feel better again.

As it is now 4 am and I've been up since 1:30 am (my typical vampire thing to do), I had probably go back to bed so that I may sleep thru the dawn and emerge again during the shadow of the late morning. (OK, a bit of an exaggeration, but the days ARE rather short here right now - the 1st day of Winter is right around the corner).

-K

Monday, December 13, 2004 10:45 AM CST

Oh, over the river and thru the woods,
To the hospital we go...

Just got Eric's counts back - way low, so in we go for a red cell transfusion.

This has been a rough week for Eric - low grade fevers, no energy, cough, runny nose, general feeling of ick.

Today, hopefully, it is just red cells he gets - he does have a bit of a fever - 100.6 F, so if it goes up, we spend the night, I imagine.

Sucks sucks sucks!!!

-Kasey

PS - Can't WAIT for LOTR: ROTH EE Dvd to come out tomorrow!!! (translatiion - Lord of the Rings: Return of the King Extended Edition Dvd) So psyched!!! 4 hours and 10 minutes of movie time on this one!!! Put it together with the other three and it is over 11 hours of viewing pleasure!!! That should kill some time on an airplane or in a hopsital room, eh? And That doesn't even count the "extras"!!!

Sunday, December 5, 2004 1:57 PM CST

Hi! Home again - Eric had chemo this week. He wasn't feeling well, so we weren't sure if it was a go, but in the end, we did check in.

So, Friday, Eric and I checked in and chemo was started at around 4:30 pm. This was Tirapazamine, Doxorubicin and Cyclophosphamide week. The nurse kind of made a little error that actually worked in our favor - while pumping in the Tirapazamine, he accidently left his D5 1/2NS + KCl IV running at the normal rate of 130 ml/hr (this is his saline, dextrose and potassium + water IV). Well, Eric still started feeling ill about 1 hour after starting the Tirapazamine, but it wasn't NEARLY as bad as it has been in the past. Immediately, we gave him some Ativan. He threw up a couple of times and then fell asleep within 20 minutes or so. This is SO much better than having him screaming out and trying to pull the tubing out of his chest. So, it was written in the notes and maybe we'll keep doing this.

So, during the night, Eric got sick one more time and was pretty wobbly every time he had to get up to go to the bathroom, but it seemed like it went pretty well. So, the next day, he was feeling OK and we went home in the afternoon!

Today, he's had some hand cramping, but not nearly as bad as it has been in the past. I think starting out giving Eric potassium directly in his IV's and also giving him extra phosphorus has helped. We've been giving him Percoset also for pain as needed. So, that's been helpful. We also have Zofran spiked in his IV fluids here at home. (Yeah, we do have him on IV fluids here at home - we've got our own pumps and he gets 70 ml/hr)

Today has been pretty mellow so far. Hopefully it'll stay that way! Katy and I have been playing on the PS2 - a little SSX 3 - a snowboarding game - trying to get psyched for the upcoming snow season. I can't wait to try to snowboard again!




Take care,
Kasey

Wednesday, December 1, 2004 9:52 PM CST

***Thursday Update: Eric's fever seemed to peak out at 100.1 F under his arm and he's feeling better today!***



Eric isn't feeling well. He was feeling good on Monday, so he went to school for the WHOLE DAY! He even came home in a good mood. Eric's counts on Monday were good also:

Hemoglobin: 10.5
White Cell Count: 12,700 (actually, way high!!!)
Platelets: 48,000 - actually a little low, but out of the danger zone.

Tuesday, however, he was so tired, I couldn't get him out of bed. He was a little stuffed up, headachy and had a little cough. Today, he was sick again - this time, we got him out of bed at 10:30 am! He'd have kept sleeping if given a choice.

So, today, for the whole day, Eric looked sick. His nose is runny and he had deep, dark circles under his eyes. Mike tried to get him to go outside for a little bit - hoping the fresh air would do him good, but instead, it ended up in a battle of wills. Well, Eric's will won out. Mike had even shut the power off to the ENTIRE HOUSE to keep Eric from turning on TV's, computers or PS2's. So, instead, Eric took a bath.

Eric was complaining that his "bladder hurt" and he does seem to have tight muscles or a knot near his pubic bone. I REALLY hope it isn't anything serious.

Well, we did talk Eric into going to a movie this evening - "National Treasure" - it was REALLY cute! A good kid action/adventure flick - not too scary - with a good mystery for the kids to follow - I thought it was kind of the same vein as "Raiders of the Lost Ark". That kind of fun! We all really liked it.

But, after we got home, Eric kind of faded. He ate a little, but not much. He took a long shower because he was cold. He actually went to bed ON HIS OWN! And TURNED OUT HIS OWN LIGHTS! This is NOT like Eric at all. This is kind of worrisome for me. I took his temp and it is running at 100.1F under the arm. If it goes much higher, off to the ER we go.

This really sucks! I was hoping he'd be feeling well. I'm starting to get worried again. It has been about 6 weeks since the last set of scans, and I'm getting panicky because I don't know what is going on. Every time Eric coughs, I'm sure it is because of lung nodules. Every time his tummy hurts, I'm sure it is tumor lumps. I think I'm going nuts here. Today, I was shopping for clothes for the kids for Christmas. I picked out a cute little Ralph Lauren Polo button down collar shirt and a tie for Eric. I noticed that the shirt was more expensive than I thought, but I bought it anyway. As I'm paying for it, I was thinking that at least it is a nice shirt to be buried in. Isn't that horrible??? I'll never tell him that, but sometimes I think it. Also, with the snow on the ground, and the days so darn short, I just think to myself that I really hope that Eric is around until Spring and Summer. I would hate for his last days to be during the cold winter. I have nothing to base my thoughts on - things are going well with him - I just find myself with a bleak outlook sometimes.

Well, I'd better stop this. I'm going to check Eric's temp again in a few minutes to see if I need to call the doc.

Wish us luck!
Kasey

Monday, November 29, 2004 9:31 PM CST

A strange thing happened while we were out of town - our world turned white! It wasn't much snow - but it is the start of the season!

Wow! Thanksgiving is over all ready! How did that happen? Where does time go?

We had a wonderful time this last week in Wisconsin Dells with Mike's family!

Oh, I should go back to last weekend, eh? Well, we did get a blood draw on Eric the Sunday before we left - we expected his counts to be low and BOY WERE THEY! So, this was the 21st of Nov. Well, the on-call doc called US to tell us to get into the hospital - Eric's hemoglobin count was THAT low! (Hgb was 6.0 - I think this was his lowest yet! His ANC was 21 and his platelet count was 30,000). Anyway, we rushed on in and Eric got a red cell transfusion and a platelet transfusion.

So, Eric and I had a follow up appt on Monday and Mike and Katy finished packing up Ernie and headed to the Dells. Eric's counts seemed stable, so we followed about 3 hours later.

Well, the transfusions must have worked, because Eric was feeling good and had a great time. The kids saw all of the cousins, uncles and aunts.

We stayed at the Dells until Wednesday, 24 Nov, and then headed south to the farm. The farm is a nice, quiet place. It even gets kind of dull, but that is OK too. There were always kids about and golf carts and hunting to do. Katy trooped along with her Dad, Uncle Tom, Uncle Dave and cousin Joey to do a little deer huntin' - they ALMOST got one. The two uncles were the ones with the guns and the others were the "dogs" - i.e. sent into the woods to flush them out. It was pretty cold and misty, but they had a good time anyway.

Well, we got back on Sunday - the 28th and Eric is still feeling good. He spent the whole day at school and it looks like he'll get the entire week there, if he stays healthy and energized. His next round of chemo looks like it may start on Monday, 6 Dec 04. It is the "bad one" again - Tirapazamine. ick! (It was going to be this Thursday, but it looks like his platelet count is still too low per today's counts)

So, everything is going well. My plans for the week include getting the Christmas decor out of the boxes and filling our house with Christmas joy. I also gotta get the bills paid and do all of that necessary, but icky, stuff we have to do to keep the house from falling apart. I'm also thinking I'm going to start looking into this real estate thing - I've been toying with the idea of owning rental property for a while and now I think I'm ready to start to jump in. I really need a career - even a part time one. I miss working - I miss having something to do that doesn't involve eating or cleaning or napping. Just a little something else to keep me motivated. I guess I'm just a little crazy like that!

Bed time now!

Thursday, November 18, 2004 3:57 AM CST

We survived the weekend in the hospital!!! Yeah! Actually, Eric did quite well - he only puked once!

To be honest, the weekend kind of flew by - of course, I say that because I split the weekend with Mike - he got some hospital duty this weekend. And actually, on Saturday night, he had BOTH kids with him in the hospital. Katy, being the big sister that she is, wanted to be in the middle of all of the action, so she spent the night as well.

So, quick synopsis:
Thursday: Eric and I got to the clinic (a little late, but oh well) and did the exam - every thing checked out OK. Then we headed up to see Dr. Troy (psych). Once again, every thing checked out OK. Ended up getting to the hospital room around noon. The hospital was fairly empty this weekend, which was nice!!! So we got a room with a private bathroom - always nice. Also, since it was kind of slow, we got a little more attention and response time were a little quicker. So, Eric's IV pump was hooked up by 12:30 pm, Zofran and Dex were given at 2:30 pm and chemo was started right at 3pm! Eric finished up around 4:30 pm and didn't puke at ALL! In fact, he was feeling pretty good! This isn't really a good thing, tho - it make him all the more cranky for having to spend the night in the hospital. Oh well. We did sleep OK on Thursday night - not great, of course, because it IS the hospital.

Friday: BINGO DAY at the hospital! Eric was feeling pretty good, so he actually left the room to play Bingo with the Child Life folks. This is a RARE occurrance! Normally he feels so crappy/cranky/etc. that he doesn't want to talk to anyone, but this time, he was good. So, Tom, Mr. Child Life, Mr. Bingo Palace, even let Eric be ON TV! Children's Hospital has their own channel in the hospital which they use for broadcasting their own shows. Well, Bingo is one of those shows - so Eric sat up with Tom with his own microphone and they called Bingo. He also won a few times as well.

Well, he was pretty tired after that whole adventure, so we headed back with his prize haul (he won 3 times). He did melt down a bit on the way back to the room, tho - he was sitting in the hallway, sobbing. I'm still not exactly sure what brought it on - tired, angry, feeling a little yucky, having his side hurt still from the stent - but there he sat. The nurses knew enough to just stay away and let him work it out. So did I! Well, he did recover and we started chemo a little earlier on Friday. While it was going on, Eric got to meet the Vulcans from the St. Paul Winter Carnival!! (see pix above) For anyone NOT from St. Paul, here is a link to the legend of the Winter Carnival:
Legend of the Winter Carnival
Well, the Winter Carnival is a BIG deal here! It is some bizzaro brainstorm that was orginally started to increase tourism - Yeah - Tourism to MINNESOTA in WINTER! Hello!!!! Well, here it is, many years later, still going strong. They even built the huge ice palace last year. I still have troubles with the concept of partying OUTSIDE in the WINTER, but there you go.

Anyway, I digress...

After Eric's chemo was done, we got a pass to head out and go home for a few hours. Eric took full advantage of that time to - Do nothing. Well, not nothing. He did play on the computer a several hours. Well, what ever makes him happy, huh? Well, when it was time to go back, Mike and Eric headed back and Katy and I stayed home. We actually went to the new Barnes & Noble gigantic-way too big-big box-gonna drive out the little guys-but pretty cool anyway bookstore that just opened in the Maplewood Mall. I proceeded to spend too much money, but had a great time doing it. I LOVE bookstores! Katy and I then went back and stayed up til midnight watching Shreck 2 (one of our many purchases).

Saturday, Katy & I went to the Minneapolis Children's Hospital. Did I ever tell you that Katy is on the Children's Hosp. Youth Advisory Committee? It is pretty cool - they meet one/month and are trying to find ways to make the hospitals a better place for the kids. They are working on new menus right now and next month, they are sponsoring a Pizza Party for some of the kids. Well, Katy got her pic taken - she's gonna be on the cover of the January Children's Hospital magazine with the other YAC members! How cool is that! I think it is nice - she making friends and also can be a part of the process at the hospital. (Speaking of which, I was accepted to be on the Family Advisory Committee - same deal, only with adults! I start in January).

So after YAC, Katy & I met Mike & Eric at the Science Museum in downtown St. Paul. They did Eric's chemo even earlier, so he was able to be out ALL afternoon on a pass. We met the Cub Scouts at the museum and watched the OmniMAX show and saw the Chinasaurs exhibit. Then we headed home so that Eric could soak up the home environment and sit around again. Then, in the evening, we all headed back to the hospital and Katy spent the night.

I guess the night went pretty well, but Eric got a pain/ache in his lower back that was bothering him thru the night. It took some Ativan and Bendryl to calm it down. Anyway, we arent' sure what that was - my theory it is from Eric sitting on his butt all day! Not enough exercise and too much computer time. Yeah, he went to the museum, but he rode most of the way in the wheelchair, so not much exercise there.

I, of course, took full advantage of my free night without kids and husband to throw a wild party! Man, it was awesome - they are still talking about it in the neighborhood! The cops were even called on us. Oh no wait. I didn't throw a party. I sat on the couch and watched a movie and read a book until midnight and then slept until 7 am when Katy called me to tell me that she was hungry. (Why call me to ask me - I'm betting Mike growled at her and told her to go back to bed - so she did the only logical thing - ask the other parent)

Sunday: Well, chemo was done early again, so Mike just loaded up Katy & Eric and brought them both home on the day pass. It was another day of doing nothing! We did play a game or something. But to be honest, I don't really remember much except for taking a nap.

Sunday night, Eric and I headed back to the hospital. This was the night he puked. Only once. Not sure why. Just did. I guess that is the name of the cancer/chemo game, eh? He did have the odd pain again in his leg, so we gave him meds and I put a movie in to distract him and hope he'd fall asleep to it. It was 11 or so when I put it in - not really paying attention to what I was doing, i put in Lord of the Rings: Return of the King. WHAT WAS I THINKING? That is a 3 hour and 15 minute movie! Eric was up until 3 AM!!!! And when the movie was over -guess what - his leg hurt!!! Well, we did finally go to sleep at some unknown point in the night - and we slept in!

Monday: OUT OUT OUT! We got checked out of the hospital on Monday. We went home and napped.

Tuesday: We had an interesting day Tuesday – very busy. Eric had a psych visit at 10 am, so we went to Children’s hospital. The doc was running late, so we saw him at 10:45 am. Then we came home for a couple of hours. Girl Scouts started at 2:15 pm (Katy’s school lets out at that time), so Eric and I and my co-leader picked up the girls to go on a tour of Children’s Hosp – so BACK we went. Eric was complaining that his tummy hurt at first. When we were ½ way there, he asked for “the bucket” that we keep in the car and proceeded to puke the rest of the way there! Needless to say, the girls will less than thrilled to be in a car with a puking child. When we got there, we were headed to the Hem/Onc clinic anyway for the tour, so we just laid him down in a room, gave him some Zofran and let him take a nap. At about 4 pm, we were done and headed home. The traffic was AWFUL! It took over an hour to get back to Mahtomedi and there were a couple of worried parents when we got there. So, we got home finally at 5:30 pm. Then, Mike, Eric and I headed BACK out to go to Eric’s Cub Scout pack meeting. I gave him some more Zofran, so he did pretty well and lasted until 8 pm. Then we all fell into bed at 9 pm.

Yesterday was kind of relaxing – Eric slept late and was having an upset tummy, so I didn’t send him to school. Instead, we had Peter, the chaplain from Children’s Home Care, come out to the house for a few hours. He played chess with Eric for a while and I got caught up on laundry and dishes. Then Eric’s tutor was here last night. Mike stayed here and I took Katy to her first step aerobics class! It wasn’t a huge workout for us – Katy and I were in a corner while I took it really slow to teach her the steps. But it is a first step! (Since soccer is over, she’s really putting on weight! And so am I!!!!)

Well, it is time to go back to sleep now. This last weekend really messed up my sleeping schedule and I'm back to waking up in the middle of the night. But now I'm sleepy.

-night
Kasey

Thursday, November 11, 2004 7:57 AM CST

Once again, super quick - Eric's chemo starts today. We got the OK yesterday afternoon that we can start today. This time, Eric will get Ifosfamide and Etoposide. Each one is administered over an hour. Not sure of the effects on Eric - he's never had these before - but they are rumored to be a little more mild that the others. So, in effect, this chemo round is "a break" from the more toxic Cyclophosphamide, Doxorubicin, Tirapazamine mix he got the last two months.

The bummer thing is that he'll get these every day for the next 5 days. Since this is a weekend, he'll be inpatient for the thing - yup - FIVE DAYS in the hospital. Thank goodness we can get a "day pass" - so we have plans to go to the Science Musesum on Saturday with the Cub Scouts and go to the Children's Museum on Sunday - just for fun. Of course, this is all based upon Eric feeling up to it.

Tonight, I have my Bunco group, so Mike will be at the hospital - trying to participate in a teleconference with China! This is the LAST WEEK (hopefully) of him tweaking his new machine - it looks like it is as good as it gets and is going to be shipped to China next week - YEAH!

Friday night, Katy has her 2nd Middle School Dance/Activity night, so that should be fun for her. She is already trying to figure out "what to wear"! I think she'd like to go shopping, but it isn't going to happen. These dances are pretty casual and we went shopping before the last one - and purchased a shirt she hasn't worn since! Oh my, I don't know how I'm going to survive teenage years!

I do need to download Pix off my camera - I have LOTS of very cute ones - sorry I haven't I've been pretty busy. Yesterday, I managed to get out of the house to work out , then purchased and INSTALLED a new faucet for the kitchen sink. I'm pretty proud of myself - I even had to cut copper tubing to size. It looks nice and doesn't even leak a little (that part took many hours to get to happen, though - the whole project took nearly 4 hours! I'd never make it as a plumber!)

Eric lasted at school for the WHOLE DAY yesterday! It was pretty amazing. Thanks to Judy Werner for convincing Eric that school, especially Math and Spanish, aren't as scary as he thinks. I know he is very reluctant to go to school - he is just fairly overwhelmed. And generally,he does feel pretty crappy a good percentage of the time - so it is nice when he is able to feel good about his accomplishment of lasting the whole day there. Of course, he proceeded to have a pretty good meltdown last night because he was so tired, but it is still good for him.

Well, off to the hospital. We are supposed to be there by 9am and I'm not yet packed and it is 8:15 am. Oops!

-K

Monday, November 8, 2004 2:14 PM CST

Good Monday to everyone!

Eric is doing quite well after his surgery last week. Of course, it took longer than I thought it would. It was scheduled for 12:15 pm, so we were there by 10:45 am, as instructed. Well, the doctor was running behind, so they didn't start until almost 1pm. Then, it took about an hour - I thought it was a 10 minute deal! Afterwards, we weren't allowed to go home until Eric could pee.

So, Dr. Wipf, the urologist did a Cystoscopy. I don't know why it is called that, but it is. Anyway, the put a stent, which looks a bit like a straw with two curly ends on it, between Eric's kidney and bladder.

Well, it took a number of hours for Eric to go, and when he did it was VERY RED! Lots of blood. And a LOT of pain. Eric was pretty sore for all of Friday and part of Saturday as well. Luckily, they gave Eric some good pain pills to help out. The blood in his urine has continued even through today, but it is a lot less today. The other weird thing is that sometimes Eric pees these weird little blood clots. Ick! I guess it is fairly normal, though.

The plans for the rest of the week are for 1) a Renal Ultrasound on Thursday - to make sure the stent is still working OK and see if the kidney is looking a little more normal and 2) start chemo on Thursday. This is the 5-day chemo of Ifosfamide and Etoposide. Eric hasn't had either of these before, so we have no idea how he'll react, but they are supposed to be a little milder. Anyway, since it goes over the weekend, we'll probably spend the weekend in the hospital and then finish up on Monday. That way we'll be done early next week.

He was feeling pretty good this morning, so Eric went to school on the bus and I got to the YMCA to work out. Then I got called - Eric was experiencing some pain in his bladder and kidney. This is fairly normal as well, they tell me, so I gave him some pain meds and took him out of school. (The pain meds are narcotic, so make him rather loopy - slightly slurry words and EVERYTHING is funny to him!) So, Eric and I met Mike for lunch today up in White Bear Lake. It was pretty good! Now, Eric and I are home and he is vegging in front of the TV - I would make him read a book normally (no TV during school hours), but he is too loopy for that!

So, the weekend was pretty good, other than Eric's pain. I got to go Scrapbooking on both Friday night and all day Saturday. I got 10 pages done (and spent WAY too much $$ - it was a Creative Memories thing). I had a nice surprise and saw Candy Hofstad and Shelia Franzen - Eric's 2nd grade teachers! So, I called Mike and had him bring Eric and Katy over for a little while. It was so sweet! Eric was climbing all over Shelia! And he was running his fingers through Shelia's hair - he said he really misses her, so he was being EXTRA loveable towards her. (Eric has always had issues with "Personal Boundaries", so when he gets around some one he LOVES, he's gotta be touchy/feely!) Shelia was a good sport about it, so it was good.

Well, I still owe you pics and details from last weekend, but I'm really tired right now, so I think I'll take a quick nap. (I've got a wicked headache also - ICK!)

-kasey

Thursday, November 4, 2004 0:29 AM CST

Connor passed away this past Monday. I am very sad to hear this, but am glad that he is no longer in pain. Please pray for strength for his parents.

OK - another super quick note.

Eric saw Dr. Wipf, a urologist, yesterday. He confirmed that Eric's right kidney is hydronephrotic (i.e. enlarged because it is full of urine). The tumor in his right internal illiac lymph node is pressing against Eric's ureter and it is blocking the flow. However, the kidney does still appear to be working just fine. So, Eric has surgery scheduled for tomorrow.

Eric will get a J-stent inserted into his ureter. It is supposed to be fairly routine and is only a day-surgery. They'll knock him out for this (thank goodness - they have to insert it thru his penis) and we'll be home by evening.

Then, the plan is to have him recover throught the weekend, and then start chemo on Monday. We'll probably have an ultrasound at some point in the future to make sure his kidney has drained, but they said the swelling will take several weeks to go away. In the meantime, we are relying on the blood tests - make sure his Creatinine (I didn't even come CLOSE to spelling that right) levels are normal - to verify that the kidney is still working OK.

There is a possibility, of course, that they won't be able to get the stent into his ureter because the tumor is too tight against it. In that case, they may have to put a tube into his kidney that drains outside his body into a bag. This would completely suck, of course, but I understand it.

In any case, the plan is for the stent to remain in place for 3-6 months - thru his chemo. By that time, the tumor should be gone. Hope hope hope.

Oh, I almost forgot - another odd side effect of chemo is that Eric's hands are peeling - it looks like he has a bad case of Athlete's foot on his hands. It is happening on his feet as well, but not as badly. Weird stuff. It doesn't seem to hurt him - just looks kind of icky.

Bed now. I'm tired.
-Kasey

Monday, November 1, 2004 8:10 AM CST

Hi! Super quick - non detailed - update.

Weekend was very busy: Scans for Eric on Friday, Katy's 11th Birthday was Friday, Girl Scout Halloween Party was Friday, Katy's Birthday Party was Saturday - went to Camp Snoopy and Rainforest Cafe, then girls spent the night, Sunday was, of course, Halloween! Whew!

Scans: Eric had a CT of chest & abdomen, and a Bone Scan of entire body. Pretty good news! In lungs, there are now only 3 small nodules!!! Yeah!! The ones in his pelvis are still there, tho.

Unfortunate news of scan, tho, is that Eric's right kidney is enlarged and the urine isn't draining well. The docs think the tumor in his pelvis on the right side are blocking his ureter. Eric will see a urologist this week - he may need a stent to open up the ureter to help urine flow faster to his bladder.

No chemo until this problem is fixed - most chemo drugs are filtered/removed by the kidneys and it is important that it flows out quickly. If it doesn't, it could cause permanent kidney damage.

So, that's the latest. Right now, Eric and I are on our way to the MN Zoo for a 4th grade field trip with his class. Talk to ya' soon!

-Kasey

Friday, October 22, 2004 3:58 PM CDT

Good Morning - at least for Eric! Today he decided to sleep in - and I mean SLEEP IN! I finally woke him up at 3:10 PM. Wow, the kid must have been tired. Admittedly, yesterday was very busy.

Well, I guess it started on Wednesday. We had a suprise installed at our house - I got the cable upgraded. It is a long story, but in the end, we have been with only the basic cable since last February. Anyway, after six months of minimal TV, Eric was asking to get the extended basic back. Eric has been doing GREAT behaviorly - he takes his medication without TOO much grumbling and has pretty much had it all together lately. And, besides, I really miss HGTV and Discovery channel! And sometimes we couldn't watch the sports we wanted because of no ESPN. Anyway, not only did I get the extended basic, I upgraded to the Digital Cable (what can I say - they were having a sale!) So now we get extra channels like the Science channel and HBO channels.

Well, with all of that new TV to watch, we stayed up pretty late - past 11 pm. Thursday, however, we had to be to the doctor's office by 8:30 am - that left very little time for actual sleep!

Yesterday was a LONG day. Eric didn't end up eating anything all morning - we put him in the car while he was asleep. Then he won't eat at the clinic or hospital - he hates the smells THAT much. Eric got an Audiogram to check his hearing (perfect!) and an Echocardiogram to see how well his heart is tolerating the chemo meds (again, perfect!). Then we went back to the clinic for a blood draw and a checkup. Eric's counts are dismally low, as expected:

Hemoglobin: 8.2 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 17,000 (normal is above 150,000; transfuse < 10, 000)
White Blood Cells: 600 (normal is 5,000 - 12,000)
ANC: 72(Normal is 2500, take precautions <1000)

The unfortunate thing is that for some reason, we weren't on the schedule. They did add us, but we were at the end, so we waited until 12:45 pm to see the doctor. Katy was with us for the whole day as well. It is MEA week (Minnesota Teacher meetings), so Katy & Eric have Thurs and Friday off. Anyway, Katy was very helpful, but it did add to the noise and stress. So by the time were were done with the doctor, Eric was hungry and tired and so upset that he was crying. So, we scooted out of there and went to Perkins for a late lunch. We pigged out on Chocolate shakes, Mozzerela sticks, Chicken fingers, pizza and pancakes - I had a salad - and then came home. We tried to take naps, but for some reason, no one could sleep.

So, last night, Eric was tired, but not sleeping. Katy woke up at midnight and 1 am with nightmares and Eric just didn't sleep well. Anyway, I think all the excitement, noise, etc, just made him really really tired.

So, we didn't really make any big plans for the weekend. I am going out tonight with some ladies to see a show called "Defending the Caveman". Should be fun! Then tomorrow is Scrapbooking! Yeah! That is always fun. I'm kind of stalled out on the scrapbooking thing, tho. I have 1999 almost done, but I need to get copies of photos made to continue. I haven't organized any other years, and that seems like such a monumental task, I just am dreading it! Oh well - better tuck in and get it done, eh?

I'm also working on sewing a costume for Katy and for Eric for Halloween. What I just realized today is that Halloween is NEXT WEEKEND! Yikes! Better get moving, eh?

Well, I am SO relieved about Eric's latest scans. I do hope that the chest CT shows reduced nodules or, better yet, NO nodules. Of course, my huge worry now is that it looks like chemo keeps it in check. Does this mean that we can never stop chemo....?

Well, back to costuming....

-kasey

Tuesday, October 19, 2004 10:10 PM CDT

The results from today's MRI proved that Eric is not yet qualified to be a doctor. He had thought that the lumps on his left side were getting larger. However, the prelinary results of the pelvis MRI showed that the major lump on his left side is actually SMALLER than it was in September! Yeah! The lump on his right size is about the same as it was before.

So, once again, these are mixed results. We know that the chemo is at least holding the cancer at bay and making some progress. However, since we were pretty scared that Eric was getting worse, I'll take any good news I can get!

So, we still have upcoming:
Thursday: Audiogram to check hearing (huh, what'd you say?), Echocardiogram to verify heart function, and blood counts. We know the counts are still on the way down, but so far, Eric is feeling good. His slight cough is back, but it not enough to worry about.

Then, October 29, we still have a CT and a bone scan scheduled. The CT will be of Eric's chest, so we'll know how those lumps in his lungs are doing at that time.

So, good news! Yeah! I celebrated by taking a nap this afternoon - it felt so good to sleep - I guess I didn't sleep well last night. Go figure....

Eric and Mike went to a Cub Scout pack meeting tonight and Katy and I stayed home and worked on Katy's costume for Halloween. Well, I worked, Katy watched and offered lots of advice. She was also telling me horror stories about some girls who took Home-Ec (now called something the FHS or something NOT Home-Ec, because Home-Ec is so, like, OUT) and then ran their fingers under the sewing machine needle. Thanks Katy!

Well, time for bed...

-Kasey

Monday, October 18, 2004 2:27 PM CDT

bills bills bills bills! ARGH! I received a notice from a collection agency that we hadn't paid $65 to Children's. So, I went back through the stacks of paperwork from Blue Cross/Blue Shield and the clinics and hospitals. I did find the one stack for that account and, by golly, I hadn't paid them! But I did get paid from my Health Care Reimbursement Acct for that money, so I went ahead and paid it. It is odd, because I also just recieved a refund from Children's because I overpaid on another service. So, I tried to go thru all the paperwork to see if there is anything else that has not been paid and it is very confusing because for a while, Blue Cross wasn't paying ANYTHING because they weren't smart enough to understand that even though there was no insurance coverage for Eric from me after I stopped working, Mike's insurance still picked it up. Anyway, I have all these bills left over from that - they are all dated back in April and May - but if one of them didn't get paid, it doesn't really stand out from the rest. Well, I guess I'll just wait until I get another notice from a collection agency. Then I KNOW I owe something.

All-in-all, we have lucked out, tho. Insurance is a wonderful thing! In 2003, if we didn't have insurance, we would have paid $289,000 to the various docs & hospitals & clinic. Instead, we paid just over $1500. For 2004, if we didn't have insurance, we'd have paid $195,000 through August. I'm sure we'll get that well over $250k by the end of the year. As it is, we've owed $1700 to date and have gotten $1200 back from HCRA. Thank god!!!! Hmmm - I wonder what our lifetime maximum is????

Eric has recovered nicely from his last chemo. The kids and I went to our neighbor's cabin this weekend. We packed lots of IV fluids, anti-nausea meds, and pain killers for Eric. Most of the meds we didn't need. He had some cramping of his hands on Friday, but was feeling pretty good on Sat and Sun. We had a nice time of sitting around playing games and watching TV. The weather was pretty cold, windy and blechy, so it was perfect weather to hole up in front of a roaring fire!

Today, Eric is at school. He was feeling a bit peaked this morning, but perked up when he saw the other kids. He did get a blood draw today and, as expected, his counts are low:

Hemoglobin: 10.0 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 76,000 (normal is above 150,000)
White Blood Cells: 300 (normal is 5,000 - 12,000)
ANC: low - didn't have a value yet (Normal is 2500, take precautions <1000)

So, Eric's counts are down and he's still getting GCSF to help get those up. The one bad thing is that Eric was sitting next to a boy he gets along with really well, but the boy was looking kid of ill and was coughing! YIKES! Oh well - let Eric socialize and then deal with the consequences later, I guess.

One more thing - Eric's MRI was moved up to tomorrow. On Saturday, Eric noticed a lump in his abdomen. Today, he noticed that it felt bigger, so I called the clinic and they moved his MRI to tomorrow. We really want to know if this thing is still growing despite the chemo. If so, then I'm not sure there is a point to continuing the chemo. Anyway, we'll know more about our options tomorrow.

Well, gotta work some more on those lovely bills!

-Kasey

Wednesday, October 13, 2004 1:31 PM CDT

Eric and I are home again! Yeah!

So, chemo was kind of sucky again. This time, Eric got Tirapazamine first, then Doxorubicin and then Cyclophosphamide. We tried to really dose him up with anti-emetics before chemo started, so hopefully, he'd feel better.

Anyway, we arrived around 10 am and got to the floor about noon. We started the anti-emetic routine at 2pm and he got Zofran (continuous), Zofran (a boost dose to start him out), Dexamethaxone or Decadron (a boost to start), and Ativan to start. He was, unfortunately, unable to get Emend - the is the drug that REALLY helped last year, but it is new for kids and there haven't been any drug interaction tests with it and Tirapazamine, Eric's chemo, so they won't let him have both together. Bummer. Also, during all of this, we gave Eric his flu shot - even though there is a shortage, Eric and the rest of us in the family are supposed to make sure we get our shots!

Anyway, the Tirapazamine started at 2:30 pm and he was fine for the first hour. Then at 3:30, he started throwing up. Bummer! So, we have him Benedryl IV. Then, he really got out of control - just like last time. He was crying, sweating, yelling, scratching himself, very anxious - telling us to stop - that the chemo was too strong! It was awful to watch. At that point, we put a scopalomine patch on him and gave him ADDITIONAL Ativan - another 1 mg! This was supposed to zonk him out - and it did. He calmed down and then fell asleep for about 3-4 hours. That let us get the rest of his chemo done without him being sick at all.

Well, after he woke up, he was pretty calm. Mike and Katy visited us - they had gone to see "Shark Tales" and then joined us for about an hour at he hospital. It was nice to see them. Then, after they left, Eric and I watched a show on PBS about the Transcontinental Railroad they built in the 1860's and 70's. It was a pretty cool show. During this time, the nurses continued to give Eric Ativan, Benedryl and his Mesna - the mesna protects his bladder from the Cyclophosphamide. And, as expected, whenever Eric pee'd, it was BRIGHT orange - that is due to the Doxorubicin. So, Eric was well-medicated that evening. He didn't throw up too much, which was good. We slept pretty well from 11 pm until 4:30 am. He was getting some cramping in his hands, but it wasn't enough to really bother him too much. Then, he got kind of weird. He was scratching at his face and yelling something, but we couldn't really understand what it was he was saying - the meds were making him slur his words. Finally, we understood that he was telling us his face felt like it was on fire - we turned on the lights and discovered that he'd broken out into a rash! His face, ears and shoulders were all red. We didn't know what caused it - most likely the Tirapazamine or else some sort of interaction. Maybe with the flu shot? Well, we took off the scop patch and stopped the Ativan and the Benedryl. He slept again until about 10am. The next day, he was still pretty out of it. His hands were really cramped and hurting and he was still all red, so we gave him some Morphine for the pain. We also started putting potassium in his IV fluids. He felt better and played a computer game for a few hours, then took a 4 hour nap. When he woke up, he was a little nauseous, so we gave him Dexamethazone and his rash went away! Yeah!

So, Eric and I spent last night in the hospital, but it was pretty calm, so we slept well. Then this morning, we got up, packed and headed out by 10 am! On the way out, Eric and I stopped by the little chapel on 4th floor of United and we both said a little prayer.

Oh, Eric doesn't remember watching the show about building the railroad at all! Must have been strong drugs, huh?

Well, I have to go take care of Girl Scouts now. Poor Deb - she broke her foot! She was going to go with me to take the girls on a tour of the hospital. Well, we'll just postpone that - but now I have to make sure the girls make it home all right.

Oh, scans & various tests coming up:
Tomorrow (Thurs): Blood counts at home
Monday (10/18): Blood counts at home
Thursday (10/21): Audiogram, Echocardiogram, Blood counts & exam at clinic
Thursday (10/29): MRI of pelvis, CT of chest and abdomen, Bone Scan, exam

This is where we find out that the chemo is working (keep a positive attitude, right?)

Talk to ya' later!
Kasey

Monday, October 11, 2004 7:51 AM CDT

Hi! Quick update -

Eric and I will be heading to the hospital this morning for Eric's chemo - This is the nasty one he got last time: Cyclophosphamide, Doxorubicin and Tirapazamine. We hope to go home tomorrow. Then he'll pretty much be ill the entire week. Hope he is feeling better this weekend, tho.

Since Eric's chemo was cancelled last week, we took advantage of the nice weather and did a spur of the moment camping trip in Ernie (our RV) to Forestville / Mystery Cave State Park. The weather was GREAT! Cool at night (40's) warm in the day (low 70's), low humidity. We took our bicycles and all went riding a couple of times. We had campfires and went hiking. I saw a Bald Eagle! Way cool! We also toured Mystery Cave as well. It was way fun. It was nice that Eric was feeling so good.

I updated the photos on this page, so take a look.

Also, the news for Connor is not good - it was confirmed that his cancer has spread and is beyond hope for a cure. Wish him and his family well in the upcoming weeks.

Well, talk to you later....

-Kasey

Tuesday, October 5, 2004 10:24 PM CDT

*** Please pray for Connor! After all of the surgery he has been through, the latest scans show that the cancer has spread to his lungs and liver. Pray to give him and his family strength in the upcoming weeks.***

Ah, once again, I am delinquent in my journaling duties. I can’t believe I let more than a week go!

Anyway, the latest and greatest news (hot off the presses) is that Eric will NOT be having chemo this week. Last week, he got blood counts done on Thursday, and everything looked great – ANC was 2100 and his Hemoglobin, and Platelets all looked good! We took him off the GCSF on September 26th (Sunday). However, he was having a hard time shaking the cold that remained from the week prior. So, he stayed home from school last Monday, Tuesday and Wednesday. He did go to school on Thursday and Friday. This week’s blood counts, however, were really low! His ANC is only 500, so they cancelled chemo for this week. Believe me, it didn’t break Eric’s heart! So, we are going to do it NEXT week.

The other big news for Eric is that he lost his hair last week. On Thursday, it was pulling out of his head with just a little tug and there was no pain, so Eric got in front of his class and showed the kids what was going on. I guess it sparked a really good discussion in the classroom. Then, on Friday morning, he had more hair on his pillow than on his head. He took a shower and it all came out then. He looked in the mirror after his shower and I think he wanted to cry – his eyes started to water, but he put on his “du rag” and announced that now he could show the kids what he looked like bald. He even commented that he thought he looked a little like grandpa now, because he had kind of a fringe of hair around his ears. So, on Friday morning, he showed his class the “after”. It really helped – that he could share this experience – it made it less scary, of course, that he’d been thru it before, but now he could get some support from his friends. And they were all very supportive!

Tomorrow, Eric and Kirsten will present “Eric’s Story” to the class – Kirsten has pictures of everything and a doll with a hickman. They’ll have a good presentation and answer questions again. I think Eric is really looking forward to it!

Other than that, my life has been consumed with Girl Scouts lately. Foolishly, I signed up to be the caretaker of the “Master List” of names and addresses of the adults in the Mahtomedi Service unit. This seems like it should be easy, but gosh, it sure takes a lot of time! It kind of makes me wonder - have I lost my ability to do work? What will/would happen if I ever went back to work – if this little thing takes so much time and effort, how would I ever be able to handle a large workload again? Anyway, it is something non-cancer related that I can work on in spurts. Gives me an odd feeling of satisfaction – even if, once again, I have let everything else go! No, the house isn’t a total disaster, but I’m not as “caught up” as I used to be. I’m also working on the Service Unit’s Web page. It has been kind of fun to do as well, but takes lots of time. Oh well.

Last Friday, I did go to a funeral while Eric was at school. Tom Dettling passed away on Sunday, September 26. Tom was a co-worker from 3M. He and I worked together on a laboratory project that spanned several years and went from a huge project to be a relatively small one due to budget cuts. Anyway, Tom was a very nice, kind man who didn’t deserve to get Leukemia and have to do the nasty treatments, and who died way too young. Tom, wherever you are, you will be missed.

So, I went to the funeral. I wasn’t going to go – I was pretty emotional. But in the end, I felt that if I didn’t, I’d always regret it. The funeral for me was more than saying goodbye to a work acquaintance – it was more of a way for me to accept the possible outcome of Eric’s treatments. I was very nervous. I didn’t really want anyone from 3M to recognize me – I know I’ve gained weight and my hair isn’t totally styled and I hate my glasses and the way I look these days. I also know I’d be a wreck and that I wouldn’t be able to handle a conversation. I also kind of miss everyone, but at the same time, know I no longer fit into that world – I don’t keep the same hours, I don’t have the same priorities, don’t know the gossip anymore. I sometimes envy those still working – they still have “normal” lives and I don’t. But, at other times, I know that I am doing the right thing and that I LOVE having the extra time with the kids and myself. I’m less stressed (in a weird way – but maybe that is the work of the Celexa), but I am also less social So, I kind of avoided anyone I might have known. If you saw me and wondered why I didn’t say “Hi”, I do apologize, but hope you understand. I’ll talk with you under less stressful circumstances – e-mail me sometime!

This weekend, we did the 2nd Annual Big Island Rendezvous trip to Albert Lea, MN. First, however, we stopped off at Caebela’s in Owatonna – it is a huge sporting goods store – not quite as big as Bass Pro Shop in Springfield, MO, but good sized anyway. We purchased new winter coats and Eric bought himself a BB gun with his Birthday Money. He hasn’t had a chance to use it yet, but he is ready! God save the poor local birds! Actually, Eric is very safe and responsible with the BB gun he uses at the farm, so I trust him with this. He shoots at targets only, so we’ll see how it goes.

Well, now I’m off to bed. For once, I got this done at sometime other than 3 am! YEAH!

-Kasey

Friday, September 24, 2004 3:21 AM CDT

My gosh, it is Friday already???? What happened to this week? Well, I'm glad you asked - let me tell you what happened!

This has been another not-so-great week in many ways, but in some ways, better than others.

When did I last update? Ah, Monday. Well, Eric did go to school on Monday and he was feeling well. He did get blood counts taken on Monday, which showed that his counts were dropping (as expected due to chemo) My dad came to visit on Monday and got here in the early evening, so we had a nice chat and meal and headed to bed at the normal time of 9-ish for the kids.

Counts for Monday, 9/21/2004
Hemoglobin: 10.9 (normal is 11-13; transfuse <7.0-7.5)
Platelets: ~150,000 (normal is above 150,000)
White Blood Cells: ~2,000 (normal is 5,000 - 12,000)
ANC: ~300 (Normal is 2500, take precautions <1000)
You know, I have gotten out of the habit of remembering Eric's counts, and I haven't been religious about writing them down in a central spot, so forgive me my lack of memory for the exact counts on Monday)

Well, Eric woke up at about 3am not feeling very well. His head was stuffy, he had a slight cough, sore throat and a fever. I guess it was to be expected - low counts and sister who was sick last week. Anyway, his fever was low - around 99F (oral), so I gave him Tylenol and he went back to sleep. But, in the morning, his fever was up a little more, so I kept him at home. It was fine, tho, because my Dad was in town, so we just kind of all hung out together - a quiet day. Lots of conversation, reading, napping, etc. I kept watching Eric's temp increase throughout the day, however. Tylenol would keep bringing it down, but everytime it wore off, it'd be slightly higher.

For fun that evening, since Eric wasn't feeling much like going out partying - or even for dinner - I purchased the boxed set of Star Wars DVD's. Dad and I watched Episode IV. Eric wasn't going to watch, but he couldn't help himself, and by the end he was hooked! Mike and Katy passed on Star Wars to watch Mean Girls. Then they came downstairs to mock us in our geekiness.

Anyway, finally around 3:30am on Wed morning (why is is always 3:30am?), Eric woke me up and his fever had topped 102.5F oral. Not the highest it has ever been, but a goodly fever nonetheless (is that how you spell that?). So, after some phone converstaions with nurses, nurse practioners, and other various hospital staff members, we decided to drag Eric into the ER. I gave him Tylenol and he fell back asleep while I was packing (well, not packing exactly - I was still packed from last week's chemo admit, so I was kind of rummaging thru stuff - it WAS 4 am, afterall.) I also was kind of killing time - my Dad was going to be taking off for the airport around 5am, so I was waiting until he got up so I could say goodbye to him. I haven't seen much of my Dad over the years, and he has only seen the kids twice in the last 3 years (he lives in Las Vegas), so I figured I could wait the last 20 minutes until he got up. So, Dad helped carry Eric to the van and we said a nice (slightly teary - at least on my part) goodbye, then Eric and I zoomed off the to ER.

As expected, they were waiting for us there. We got our pick of ER rooms - we chose a nice one in the back, away from the hustle and bustle. They took his temp (it was down to 99F oral due to the Tylenol), took his blood counts (dismally low) and started antibiotics (Ceftazadime - also known as Fortaz). He was still on his IV fluids, so we kept those running as well.

While we were waiting in the ER, Eric and I watched the 2nd of the Star Wars trilogy. Then they moved us up to a room on 4200 wing of Children's - St. Paul. Eventually every doctor in the hospital filtered thru our room to see Eric. By this time, Eric and I were watching the THIRD Star Wars movie and they were irritating Eric with questions, listening to his heart, poking his belly to look for lumps, etc. So I firmly told them all that we'd like to go HOME that day, and due to the miracle of Karuna hospice care, they actually sent us home! We got released just in time - we ran out of Star Wars movies and Eric was about to get cranky. Anyway, we got home around 2 pm - that has to be a record for getting in and out of the hospital for us!

Eric's Blood Counts on Wednesday
Hemoglobin: 10.3 (normal is 11-13; transfuse <7.0-7.5)
Platelets: 91,000 (normal is above 150,000)
White Blood Cells: ~300 (normal is 5,000 - 12,000)
ANC: 33 (Normal is 2500, take precautions <1000)

So, our home care regime includes IV fluids (D5 1/2Normal Saline) for 24 hrs/day, 2000 mg twice a day of Fortaz antibiotics, Tylenol, G-CSF and lots of rest thru Saturday. We'll get counts done again on Saturday and go from there.

Yesterday, Thursday, Eric's fever was down a bit - still a fever, but not as high - it hovered between 98.5 and 99 F thru the day. He slept in until 10:30 am and then decided that he wanted to go to school to see the butterflies.

School is an odd thing right now for me. I have mixed feelings on school. Last year, Eric fought tooth and nail on anything school related. He didn't want to go and when he was there, he'd find excuses to go to the nurses office and sleep or do anything other than school. This year, he seems to be enjoying school, but he still doesn't want to do EVERYTHING they are doing. Well, Mike & I have a meeting with Eric's psychologist tomorrow(today) to talk about this and other stuff. Then we meet with the staff on Monday to talk about school expectations. I think we'll just play it by ear.

The thing that really interests him is Science. They are raising Monarch butterflies this year. The first week of school, they got some caterpillar eggs and have watched them hatch and grow. Monday, the caterpillars were still caterpillars, but were close to the "J-stage", so yesterday, Eric really wanted to see what happened to them while he was out on Tues and Wed. So, we packed up his IV bag and headed in for a few hours. His fever was down, so I figured what's the harm. (Well, the harm is that he has no White Blood Cells to fight infection, so I almost hate to expose him to the germ factory that is school, but he wanted to go, so we went). Turns out, the caterpillars are now in their chrysalis stage! Cool! We stayed at school for about 3 hours total - a lot longer than I though he'd want to stay, but he was having a good time and was participating! I do worry that we pushed it a little far, tho. He was pretty tired by the time we got home and his fever was up a little. By the time he went to bed, he was about 100F oral again. More tylenol... Before he went to sleep, Eric told me he wants to go back again today.

So, what am I doing up at 3 am again? I guess it is a habit now. In general, I've been sleeping pretty well lately. Today is just a quirk. Or more like an upset tummy. I got out last night for a few hours to play Bunco at a neighbor's house. She had FABULOUS appetizers and wine that came back to haunt me at 3am. Nothing a little Pepto couldn't cure, tho.

As an update on Katy - she LOVES middle school! She was kind of a B-student in elementary school, but so far, she's been getting all A's this year! She has figured out how to be organized and is on top of all of her homework - a couple of years ago I was fearing she'd never make it because she HATED homework. She's still not overly enthused, but does get it done. And, the big this is that tonight is the first DANCE! It is all the girls have been talking about all week (we had a Girl Scout meeting this week and they talked NONSTOP about what to wear, who asked whom to dance, what color nailpolish looks best, etc.) So, I think Katy has found her thing! I'll have to give you an update on Saturday to give you the details of how the dance went. I suddenly feel very old - I'm not old enough to have a daughter who is old enough to dance with boys! ARGH!

Oh, I forgot, I think Eric's over his "suicide" thing. He announced to me that killing himself would be bad because he is afraid of going to "the other place - you know, Mom, h-e-double hockey sticks!" So, he figures he's better off sticking it out and ending up in heaven, even though chemo sucks. And yes, Eric, chemo sucks, but I'm glad you aren't going to hurt yourself.

Well, I'm thinking longingly of my bed right now, so I'm off to go find it!

-Kasey

Monday, September 20, 2004 2:22 PM CDT

Good Afternoon! Today has started out well - BOTH kids went to school - so everyone is feeling better. I'm getting ready for a visit from my Dad tonight (it has been a while since we've seen him - two or three years since he was out here last), so I'm booking along with the cleaning. We've gotten Eric's blood tested (I haven't gotten the results back yet, but his white blood counts must be low because I got a shipment of G-CSF from Children's Home Care), and I've picked up a prescription and some groceries and done two loads of laundry. I even picked milkweed and took it to school for Eric's class's caterpillars! Whew! Hope I have enough energy for visiting with Dad tonight!

Well, we had a pretty good weekend. On Saturday, we went to a party for Mike's softball team. We didn't stay too long, because afterwards, we went to Katy's soccer game.

THEY WON! THEY WON! This is the FIRST win for Katy's soccer team this year! Yeah!!!!!! Katy did great! She has been having practice two nights a week and at least 1 game a week, and we've been getting her out to do some more exercise, so Katy's stamina is way up! She's beginning to get some more control of the ball as well. I think if she keeps up with soccer over the winter, she'll get pretty good. Yesterday, they lost, unfortunately, but the game was pretty close, and Katy assisted with a score!

After the soccer game, we celebrated at Dairy Queen and Eric fell asleep in the car. Then, later, Katy, Eric and I went to Peri R's house for the monthly scrapbooking get together. The kids had a great time. I was completely slug-like and didn't get anything done - but I did watch Ella Enchanted! It was a little disturbing - Eric was talking with my friends Lisa H and Tracey and he was talking about suicide again. So, he and I talked about how suicide is a mortal sin and that if he dies now, he doesn't have much of a chnnce for a cure. Anyway, this is still an open topic - death, cancer, cures, etc. Lots of talking to happen in the next few weeks.

Sunday, Make-A-Wish sponsored a fun day at Camp Snoopy - we spend several hours riding rides and having a good time. We even got Eric on the new Timberland Twister! Fun little roller coaster! Afterwards, tho, we were all pretty exhausted. At least Mike & I were, so we napped.

Anyway, Eric is at school today. I spent a little time there with him, but he seems very motivated and happy to be there. I'm so glad! Science is definitely his fav. subject right now.

Katy just got home and she announced that she wants to go to the Middle School Dance this Friday. I guess the boys have been asking the girls! YIKES! I'm not old enough to have a daughter who is old enough to go to dances with boys! ARGH!

-Kasey

Thursday, September 16, 2004 1:32 PM CDT

**Update: Friday, 17 Sept 2004 - 3:50 pm: Eric is currently in the 3rd hour of a nap - Wow! Power Napping! I'm glad to say that Eric's potassium levels are higher - 4.1. I guess the banana, milk and broccoli we FORCED Eric to eat last night (his words)
worked. I still have Eric hooked up to an IV with Zofran spiked in it. He was pretty hungry this morning, so I made him biscuits, sausage and scrambled eggs. Unfortunately, they made a second appearance about 20 minutes later. Bummer. Hopefully, he'll be feeling better tomorrow. Katy stayed home again today - sick with this cold thing. She's looking better this afternoon, so I'm sure she'll be going back to school on Monday. Well, hopefully we have a nice weekend. ***


**Update: 4:30 pm - The Hem/Onc clinic just called to tell me that Eric's potassium levels in his blood is still very low. Normal is 3.7 and above; yesterday, Eric's was 3.4 and today it is 2.8. Not sure what is going on there! Anyway, I'm to feed him broccoli and bananas and he'll get another blood check tomorrow. This is probably why he is still having leg cramps today. Turns out the sports drink I've been giving him, while it does have potassium in it, it isn't as much as I'd thought. I should probably read the labels a little more closely, huh?

More sad news: Trever has lost his battle with Rhabdo and is now an Angel - Angel Trever**

Hi! We are out of the hospital - actually, we got out yesterday afternoon. The chemo this time wasn't great, but not as bad as it probably could have been!

We arrived a little late on Tuesday - we were due to arrive at 8:30 am, but I really wasn't in a big hurry since I know that the hospital never is. And, as expected, Eric's chemo started around 3:30 pm.

In the morning and early afternoon, Eric was very cheerful and very sociable! He did a great job of talking to the nurses. We met another boy with cancer - Tucker - he's 6 1/2 and was just diagnosed and started chemo. So, Eric visited with Tucker and tried to cheer him up a little. It was pretty cute!

We also had a nice visit from Lisa K around lunchtime. She brought some "non-hospital food" for Eric - a HUGE bag of popcorn, chips, candy, etc. - so that Eric could snack if hungry! Katy came to the hospital later and laid claim to the Milk Duds! Thanks Lisa - it was a nice visit!

Mike and Katy showed up a little later - after Eric's chemo started. It was nice to see them, but they didn't stay long - Eric started not feeling well and he wanted quiet.

The Tirapazamine was not a fun chemo to have. They started it around 3:30 pm and it ran for two hours. About an hour into it, Eric started to really not feel good. I kind of blame myself - I didn't have him filled up with Anti-Nausea meds as I could have - we only gave him Zofran and Dexamethasone. Looking back at it, we probably should have given him some Emend, Ativan and/or Benedryl before starting chemo. Anyway, he kind of got a little violent - he was feeling bad, but couldn't describe it - just that he wanted to stop NOW. He was kind of tugging at his tubes and trying to shut off the IV pump at first - he was just a little panicked. He was fighting me and the nurse, but we gave him some Ativan and he calmed down right away. We also gave him some IV Benedryl about an hour later, and he kind of settled into a stupor.

So, Eric got sick quite a bit that afternoon and evening. They finished the Tirapazamine after two hours or so, and then he got the Doxorubicin a couple of hours later. By then, he'd been sick quite a bit, so I didn't notice him getting any worse. Finally, they started his Cyclophosphamide about 9 pm. He slept right thru that one.

The night was, as usual, not restful. Eric pretty much slept thru it all, but since he was getting IV fluids at 130 ml/hr, he did have to get up to pee 3 times in the night. But, I kept waking up whenever Dana, the nurse, came into the room. I guess I'm just out of practice at sleeping at the hospital! Anyway, he got meds at 9 pm, 10:30 pm, 11:30 pm, 1:30 am, 4:30am, 5:30 am, 6:30 am and 8 am. He got up at 2 am, 4 am and 5:30 am. ARGH!

Well, the next day, I was pretty tired. We did convince the doctor to let Eric go home yesterday. He was eating a little bit in the morning and, while grumpy, was perky. He was getting leg and foot cramps yesterday - and he had the hiccups as well! Well, we discovered that it was due to the fact that his potassium and calcium levels in his blood were low. I gave Eric a sports drink and it seemed to help out.

So, we got home yesterday around 2:30 pm and I was exhausted! I immediately went to bed for a nap, but tossed and turned for a number of hours. Eventually, I just got up and ate a snack and then napped from about 4 to about 6 pm. I still managed to sleep well last night (Amazing!)

We started Eric's G-CSF last night - this is to help boost his White Blood Cell count - he is actually starting this round of chemo kind of low - his ANC is around 600 (normal is above 1500). (The ANC is a measure of the body's ability to fight disease). We also hooked Eric up to an IV of D5 1/2NS and Zofran (Dextrose, Saline, Water, Zofran) last night, so he is well hydrated!

This morning, Eric was still sleeping, so I let him sleep and stay home from school. He ended up waking up at 11:30 am! He ate some breakfast and is feeling pretty well, but his face is kind of puffy and his eyes are red - must be from all the fluids and sleep.

Katy, unfortunately, woke up not feeling well today. She went to school, but an hour later, I got a call to come pick her up early - she's got a stuffy head, headache, sore throat, achy bones. Sounds like the flu or a cold. Bummer. She came home and took a nap and is feeling a little better after some Tylenol and Benedryl.

Well, I'm off to take a short nap - I'm still tired - making up for lost time, I guess!

-Kasey

Monday, September 13, 2004 9:46 PM CDT

Just a quick note to say "THANKS!" to everyone who signed Eric's guestbook. This morning, when he first woke up, we sat here at my computer and read every one of the entries of the last few days! It took awhile and Eric almost missed the bus, but it really made his day!

Eric was, at first, kind of bummed about having to go to school on his birthday. But, I think he learned that isn't too bad after all - he was especially thrilled about the candy he got from the office staff! And, of course, the cupcakes I brought were a nice treat.

This afternoon, Mike got home early and he, Katy & I helped Eric open his presents. This year was so much better than last year. Last year, since he had just gotten out of the hospital for chemo the night before, he would open a gift, then lean over and puke in the trashcan next to him. This year was SO much better!

So, Eric was thrilled with the DVD's of cartoons from my Grandparents on my Dad's side (they are old ones like Popeye, Superman, Felix the Cat, etc.). He also got a nice book from my dad about African Wildlife (so that he can plan that safari to Africa). Katy got Eric some nice music to help him sleep at night, and a candle warmer - so that he can smell the candles in his hospital room, without lighting them! There was also lots of money and gift certificates as well.

Gary G. (who works with Mike) and his family gave us (the whole family) a nice book and CD which is called "The Next Place" - it is actually quite timely. The psychologist feels it is time for us to start opening up with Eric about his prognosis and helping him to understand how to prepare for the possiblity of his death, yet without losing hope in the current treatment. I found a nice website to help as well ==> Camp Heaven

Anyway - back to the gifts/day. Mike/Katy & I also got Eric some other nice things - a remote control car, the new Pokemon Game Boy Games and a Magic Hat - which includes the stuff to do over 125 magic tricks. I see lots of magic shows in my future!

Later, Sean, Colin & Lisa came over to help celebrate with cake and ice cream. Eric blew all the candles out in one breath! That means his wish will come true, huh? I wonder what he wished for....

Anyway, it was a nice day. Tomorrow, Eric and I will travel to Children's St. Paul for the new Chemo regime. I'll keep you posted on how he is feeling.

-Kasey

Thursday, September 9, 2004 7:30 AM CDT

I know everyone is biting their nails, wondering about Eric's results from yesterday, so here it is. We had mixed results, so the path forward isn't as clear as we'd like.

The nodules in Eric's lungs are slightly smaller and fewer. There were 9 nodes and the radiologist counted 6 yesterday and the largest one was 6 mm - down from 8 mm before.

However, the lumps in the lymph nodes in Eric's pelvis are larger. I'm not sure if there are more or not. You still can't see anything on the outside and the doctor can't feel anything, but the MRI's show the largest to be on the right side of his groin and is now about 3 cm in diameter. So, not huge, but still, negative progress.

Anyway, Dr. Slomiany is calling this a "Negative Response" - since some of the tumors are still growing even with chemo treatment, the chemo isn't working on those tumors and we have to do something different than we've been doing.

So, we will switch to the "Non-Responders" side of the treatment. This means that he'll stop getting Vincristine and Irinotecan and he'll get Tirapazamine added to the mix of chemo drugs.

Here is a link to Eric's Treatment Schedule:
Treatment Schedule

The next step is that Eric'll go inpatient to Children's Hospital on Tuesday, Sept 14. He'll get Cyclophosphamide , Doxorubicin and Tirapazamine. He'll also get Mesna to protect his bladder. And, of course, a variety of anti-nausea drugs.

Eric's Birthday is Sept 13 (Monday). He kind of wants to go to Valleyfair, so I think we'll go there on Sunday. If you read this, please sign the guestbook or send a quick e-mail to Eric wishing his a Happy Birthday! He really likes to read the guestbook entries these days.

School is going well for everyone and Eric will go today. He does have a Psychologist appointment this afternoon, so he'll miss this afternoon, but he's still enjoying it and is even getting his homework done! (With just a little prompting).

Well, time to wake Eric up for the day!

-kasey

Tuesday, September 7, 2004 3:39 AM CDT

I am SOOO far behind in updating the journal. I made an attempt last week, but after an hour of typing, I hit something wrong and didn't save it. ARGH.

So, here's the news in a nutshell first:
- went to the Renaissance Festival in Aug
- Eric's at-home chemo went well
- the first week of school was a success, though Eric was nauseous and threw up a lot - but we gave him meds
- I got a "girls night out" and went to the State Fair on Friday
- We had visitors (Mike's mom, Jean, his brother, Dave, and Dave's kids, Brit & Joe) and it was a rousing success - especially if you measure success by the number of boat props you destroy.

So, going back a few weeks - August 21, before Eric's chemo, we decided to do the 2nd annual visit to the Renaissance Festival. The difficult part was getting out the door! Mike slept in, and then we got some costumes and then Eric decided that he didn't want to go, but in the end, we made him. So, we got there around 2 pm, but we had a good time. We saw the jousting, the glass blowers, the Goofy Chickens, the parade, the jugglers, etc. etc. I even got a Turkey Leg - YUM! So, it was a little celebration before Eric's week-long chemo.

Eric's chemo was the week of Aug 23. That week, Eric's counts were back to normal, so he got Vincristine and Irinotecan. The Vincristine is just a shot, but the Irinotecan takes an hour or so to infuse. It seemed like Eric was feeling fine until about 1/2 way thru the Irinotecan - then he'd feel kind of sleepy, nauseous, etc. So, we went home and Eric kind of zonked the rest of the day - we doped him up with Ativan and Zofran, but he was definitely ill.

Tuesday, Eric woke and was feeling well. He had a Psychologist appointment that day, and he was feeling much better. He talked with Dr. Troy and was very excited about school coming up. However, it was very upset about chemo and REALLY didn't want to go to the clinic afterwards. (He was sobbing and very sad). So, Dr. Troy and I (and Katy -she was with us) all took him to the clinic, and while we were there for chemo, I set it up so that we could do the rest of the week's chemo at home.

So, Wed, Thurs, and Friday, we had a homecare nurse come out to the house to give Eric his chemo. It was SOOO much better to do this at home for Eric. He could play games and read and watch TV and just chill out if he wanted. There was no waiting around for doctors and chemo meds and blood tests! So it was awesome! I wish we could do ALL chemos at home - but I think the next round we have to be in the hospital for.

That next weekend, we kind of chilled out and did some yard work - I think. To be honest, I don't really remember what we did that weekend. Bought school shoes. But nothing else really comes to mind. Oh, my kingdom for a brain!

So, the next week was the prep for the first day of school. Monday, Eric had another psych appointment with Dr. Einzig. While there, we reviewed his psych meds and agreed that he should increase his Celexa (anti depressant). However, practice is quite different - Eric hates 1/2 pills, and the new dose is 1 1/2 pills. So, he is currently still on the old dose. Eric was still pretty adamant about not wanting to do chemo any more, but he was more accepting.

After Dr. Einzig, we did go the clinic for a Vincristine push. Luckily, it was a pretty quick clinic visit. Unluckily, the Vincristine made Eric sick this time - this is very unusual, but for whatever reason, he was vomiting all the way home from the doctor's office. (Thank goodness we have wise up and now keep barf buckets in the car!)

That evening, Katy had her Middle School Open House - so Katy, Eric and I trotted to the Middle School and got Katy's schedule, locker, met her teachers, took her pictures, etc. etc. etc. Then we RACED home for Katy to change for her Soccer Practice. Whew! Monday was busy!

Tuesday morning, it was Eric's Open house for school. We took all of his new school supplied and filled his desk. He met his teacher, Mrs. Werner, and he got caught up with lots of old friends from School - every time we turned around, he had someone he was chatting with or hugging! It was good. His energy level lasted about an hour, then we went home and he ate a little bit before his psychologist appointment with Dr. Troy. By the time we got to the clinic, Eric was sick again. He was also complaining that his bladder was hurting him. So, after talking with Dr. Troy a while, we made an impromptu visit to the clinic. While there, he was really not looking well, so they hooked him up to IV fluids and he took a LONG nap (about 3 hours). I guess the combo of the chemo from the last week, the vomiting, the busy schedule, etc. wore the kid out and he was dehydrated. After a long nap and some fluids, though, Eric felt MUCH better.

Wednesday, Sept 1, was the FIRST DAY OF SCHOOL! Wow, the summer went by fast! Katy was thrilled to go to school and is excited that she has three classes with her best friend, Charlotte. She also was a pro at the whole locker thing. I guess a lot of kids had problems with the lockers, but Katy was helping other kids get their lockers open. Yeah! Eric did pretty well and had a great time at the 1st day, until about 2:30 pm, when he started throwing up. I did go pick him up from school, but he was having such a good time that he didn't want to leave - despite the puking! Anyway, I did insist he come with me and I took him home and hooked him up to the IV fluids.

So, the lesson we learned from all of this is that we are going to make sure Eric doesn't get dehydrated. We now have IV fluids and an IV pump and every night, we hook him up. The D5NS IV solution also has Zofran mixed in, so we are also giving him some anti-nausea meds thru the night as well.

The rest of the week, Thus and Fri, we gave Eric the IV fluids and then at lunch time, we came to the school and gave him some IV Zofran at lunchtime. With these, he made it thru the rest of the week with NO Puking! Yeah! He felt great and loved school!

This weekend, a few of Mike's family came to visit - Mike's Mom, Jean, his brother, Dave, and two of Dave's kids, Britt and Joe. So, they were due to arrive on Friday afternoon, but I decided to take some time and hit the old MN State Fair.

The Fair is quite the annual event and an extravaganza of extensive proportions! This year, since I was sans kids, Angie and I decided that we'd see thing we can never really LOOK at whenever we have kids with us - so we spent hours looking at Creative Arts, Merchandise Mart wares, Fine Arts, and NO animals. The food tally wasn't as bad as I thought it would be: 1 corn dog, 2 diet cokes, 1 French Crepe with cheese & asparagus, 1 beer, 1 bucket of "Sweet Martha's Cookies", ice cream, and 1 thing of cheese curds (shared). That evening, Angie & I met Lisa and we saw the Martina McBride concert. It was good - even the opening acts were good. Country is normally not my thing, but I do like Martina. Then, we saw the fireworks and went home.

I got home to a quiet, full house. The next morning, I got caught up on all the "Farm News" with Jean and I think we had a pretty nice weekend all in all.

Saturday, Mike, Dave & the kids (except for Eric) went tubing on White Bear Lake. They were out there for a long time, so I think they all had a great time. Other than a slight miscalculation on Mike's part, that is. Now, I wasn't there, but it sounds like there was some confusion about which side of a buoy to drive on and in the end, the prop on the boat looked a bit like a piranha had taken a bit out of each fin. Oops.

Sunday, Mike & Dave went prop shopping while the rest of us went shopping around the Maplewood Mall. Then, we met back at the house and Mike, Dave, Jean, Brit, Joe and Katy all took the boat back out. Now, mind you, the weather had been kind of rainy and windy all day, so I checked the radar and saw that there was a line of thunderstorms headed our way. I told Mike he had about 2-3 hours until they hit, so they'd better hurry. Did he listen? No.

Instead, the boys decided that that wanted to boat the river, so they put in the St. Croix at Stillwater and then boated, in very choppy water, to the Mississippi. After an hour or so, Jean asked the boys to turn around. They didn't. They went up the Mississippi to the nearest lock/dam. Then it started to sprinkle, so they headed back down stream. When they got back to the St. Croix, Jean asked the boys to go back - it was very dark and windy - Mike almost said No, but Mom does still have some power over her son, though it sounds like she had to raise her voice a bit. (Now you know where Eric gets his defiance against his parents - like there was ever any question that Mike was difficult one!) Anyway, as they were chugging back up to Stillwater, the storm hit. Sheets of rain, lots of wind, thunder, lighting, etc. There is no top on the boat, so Joe and Katy were hiding under the dash and Brit and Jean huddled under wet towels. And, somehow in the rain, Mike had that same buoy problem and destroyed prop #2, the one he'd purchased that day!

In the end, everyone got home safely, but very cold and wet. And now we have something to talk about. All I can say is, I'm REALLY glad that Eric and I were warm and snug here in the house and NOT on the boat.

Yesterday was recovery day. The guests left, I picked up, the kids chilled out, Mike & I exercised, homework was done.

The plan for this week is to go to school tomorrow - well, Eric and Katy will go to school. I'll do something around here (Eric hasn't needed me at school - Yeah!). Wednesday is SCAN DAY for Eric. He'll get an MRI and a CT to see if the chemo is helping or not. Well, we'll find out more on Wednesday, huh?

I made a few more changes to the new Ruegsegger Web Page. Firstly, I compressed the pictures, so they should be downloadable now. I also have started adding information on Eric's chemo meds. Hopefully, all of this is good info for you.
The Ruegsegger Page

Well, it is now 4:40 am and I need to get a couple of hours of sleep by tomorrow.

-K

Wednesday, September 1, 2004 8:05 AM CDT

Hi!

I made some updates to the other Web Page -

http://home.comcast.net/~kcrueg/home.htm

I have noticed, however, that this web page doesn't work so well on Mike's computer. I created this using Windows XP Pro (with service pack 2)and Microsoft Publisher 2003, so maybe there are some features that don't work on Windows NT or Windows 2002. Also, I am using Internet Explorer 6.0, also upgraded with service pack 2. Anyway, I apologize if the photos don't seem to match the captions - they do when I click it. Also, the links work when I try it, and I'm sorry if they don't seem to work for you. I am just learning this Web Publishing thing and have discovered that it is a little more tricky than you might think.

-Kasey

Wednesday, August 25, 2004 10:20 PM CDT

Hi! A quick update to tell you all how chemo is going.

Sunday we did a blood count and Eric's ANC was 1500, OK to proceed with chemo on Monday. This time, however, we wanted to try it in the clinic, instead of checking into the hospital.

This is Eric's 2nd round of chemo and consists of a Vincristine push and an infusion of Irinotecan metered in over an hour. The main immediate side effects are some nausea, vomiting, stomach cramps and diarrhea.

So, Monday we hustled into the clinic for our 10:00 am appointment. As I said before, Eric's counts were good, but they still wanted ANOTHER blood test - this time to check his electrolytes to make sure he wasn't dehydrated. Why they couldn't do it before... Anyway, we waited. Dr. Slomiany checked him out and then we gave him some Zofran and started chemo at noon.

It went pretty well that first day. No IV fluids - I just kept giving him Zofran every 4 hours and Atavan every 6 hours. Eric was nauseous and kind of out of it that afternoon and evening, but he didn't get sick and didn't get diarrhea.

Tuesday, Eric had an appointment with Dr. Troy at 10 am. That seemed to be going well when we first got there, but at 11 am, Dr. Troy came and got me - Eric had been crying and was very upset. I guess it has all come crashing home - he is VERY upset about his relapse and is VERY upset about having to have chemo again. He told her he'd rather die than have chemo again. He even told her he was suicidal - but more in a "ready to die" way - not in a "I'm gonna kill myself" way. At any rate, it was a tough morning. Dr. Troy gave me the phone #'s of some local crisis hotlines and we need to keep a close eye on him as we proceed.

As you may have expected, he did NOT want to do chemo on Tuesday. After some smooth talking, soothing, and bribing, we did manage to get him hooked up. We gave him Zofran again for nausea, then afterwards we went home again. Eric was feeling much better, mentally, that afternoon. We watched some movies and played some games (Katy too). The Children's Home Care folks sent us some IV fluids spiked with Zofran, "just in case" he got sick. Well, it was a good thing they did. He started throwing up around 6pm and was sick for about an hour. He had some pretty bad stomach cramps as well. I gave him Zofran and Atavan and then he fell asleep from 7-9pm. While he was asleep, I hooked him up to the IV - 70 ml/hr of fluids. Not a lot, but enough to help him.

So, yesterday in the clinic, we talked with the doctor and he agreed that the Irinotecan chemo could be given at home. We though that it would be better for him, mentally, at this point. The Home Care nurses are trained for some types of chemo, and so it looks like a good fit.

Today, Eric felt GREAT! No nausea - a little diarrhea, but not enough to worry about. He was even hungry and ate a good breakfast and a good lunch! Eric was even in a very good mood all day. The Home Care nurse came around 3:00 pm and we gave Eric his Irinotecan without any problems. Katy had a friend over to play, so all three of them were playing a board game during Eric's chemo. I continued Eric's IV fluids all day and during chemo. Then, right after chemo was done, we gave him a spike of Zofran and unhooked him from the IV so that he could take a shower.

A few hours later, I hooked Eric back up to the IV fluids with Zofran spiked in the bag, so that he'll stay hydrated and non-nauseated. He never did throw up today, but he did start to get some diarrhea. Hope that doesn't get worse, but I know it will.

The plan now is to give Eric his Irinotecan tomorrow and Friday here at home. Then, Monday, Eric is due to get Vincristine again. This, unfortunately, does not qualify as a good "at home" chemo drug. If it is given improperly, it can really do some damage - chemical burns to the insides of the veins. So, Monday we have to go back to the clinic. Then, we will get blood counts later that week as well - to see what is happening to his white counts.

Also next week, school starts.

Then, on Sept 8, Eric will have a CT and MRI and blood workup to see if the chemo is having any sort of positive effect on the cancer. Depending upon the results, we will know what our next steps are. In either case, though, it looks like it will be a hospital stay during the week of Sept. 13.

Eric is at my side right now - he can't sleep. Eric said that he is really grumpy because I am typing and not sleeping with him now. So, I guess I'd better go. Oh, Eric also says "Hi! I can't wait to meet Mrs. Werner, my teacher, again. I can't wait to meet everyone in my class. I want to use a protractor and a compass and my new calculator and my new pencils. I just can't wait for fourth grade!"

Good night!
Kasey & Eric

Saturday, August 21, 2004 3:54 AM CDT

Good Morning! Katy woke up after a bad dream, and woke me up to tell me about it. I am hoping to go back to sleep, so I'll keep this short.

I just wanted to give a huge THANK YOU! to everyone who attended the Make-A-Wish fundraiser at Applebee's or to everyone who has donated to Make-A-Wish! It was a fantastic time! Thanks to Applebee's as well!

Mike, Eric, Katy & I went out to Applebee's at lunchtime on Tuesday and met up with a bunch of people - lots from Medical Specialties! It was so nice to see everyone there and Eric just had a great time. He was excited because he said he felt like "a celebrity!" They had balloons, animal faces, and pictures of Eric up as you came in. Everyone from the staff was wearing Make-A-Wish shirts and there were about 15-20 people out washing cars. As soon as we got there, everyone came over to Eric - they already knew who he was! The wait staff all knew him as well and were awesome. He and Katy got a tour of the kitchen, and Eric was busy taking a ton of pictures with his little camera they gave him. (I have to get the film developed, so a little patience will be needed on this). Eric even told me he had at least 5 people come up to him asking for his autograph on their shirts! Applebee's paid for our family's lunch and it was a great time!

The highlight for Katy was seeing her Kindergarten teacher, Susie and her baby. Katy and Susie have always gotten along so well - Katy just loves her to death! Susie - thanks for being there!

Later that evening, Eric and I went back to Applebee's - they had a petting zoo set up in the evening, and Eric wanted to go see. So, Mike & Katy stayed home and did a little "bonding" (i.e. watching movies and eating ice cream), while Eric and I went back. While there, we ran into several more people we knew and Eric talked with lots of kids and petted the animals. He especially loved the bunnies!

I think the event went well and once again, Thank You to everyone!

This has been a good week so far. I have decided to take a few steps to improve my mental state. I started a new "to do" list - I now have a little notebook I carry around. I may not get to everything, but at least I don't have to worry about waking up, worrying that I'll forget to do something important. Now, if I don't get it done, it is just pure procrastination!

Another benefit of no chemo this week, is that I have been home most of the week to get some of those "to do's" done. I have reclaimed my laundry room from the dirty laundry monster. The rest of the house is also coming back into order - my office is better, but not perfect yet. I managed to wade thru a pile of insurance stuff and call Blue Cross to get them to pay some of the bills (for some reason, they seem to think that I still work AND that we have another insurance company, so many times they choose not to pay - I then have to call and remind them that 1) I am not working right now and 2) even if I WAS working, our other insurance would have been BLUE CROSS! There IS NO other insurance! egads! ). I even got some help with other cleaning (Thank You, C.!) and the house is looking (and smelling) much better. Eric's room is now clean and the stuffed animals all have homes (thanks to an IKEA thingie we hung from the ceiling which now houses about 30 stuffed animals). I even managed to take the kids School Supply Shopping - an EVENT all in itself!

Mike & I have also been exercising. Back to it again! So far, we have worked out 7 of the last 8 days - either running or bike riding. The new thing is to get Katy & Eric out with us. Eric has been riding his bike alongside Mike & I running. We "talked" Katy into running a lap around the block first, then getting her bike and riding with us the rest of the way. When I say "talked", I mean we withheld things she wanted until she did it - going over to a friend's house seemed to work well with her. Yesterday's exercise reward is to go the Renaissance Festival today. Good thing she went running without too much fuss, because I really wanted to go to the Ren Fest, and if she'd have refused, I'd have been bummed out. I think I'm going to have to think about this "reward" thing more carefully in the future!

Speaking of the Renaissance Festival (which opens in about 5 hours), I really want to be happy, cheerful and non-sleepy, so I'd better get back to bec now.

-Kasey

Monday, August 16, 2004 2:50 PM CDT

The Applebee’s Restaurant in Cottage Grove 8380 E. Pointe Douglas Rd) has sponsored Eric’s Make-A-Wish wish trip to San Diego!!!
In Eric’s honor, Applebee’s is holding a fund raising event on Tuesday, August 17th, 2004. The fundraiser lasts all day with a car wash, silent auction, and there is a rumor of pony rides or some sort of petting zoo.

or

if you’d like to contribute to Make-a-Wish in Eric’s honor, contact www.wishmn.org/