History

Wednesday, May 17, 2006 3:29 PM CDT

Today two years ago we found out that Karley had cancer. The days have gone by so slowly and it seems like so long ago, but all the pain and loss still remains after all this time. Today I found myself back to one of the worst days of my life, replaying all the events that took place over and over it probally will be like this forever I suppose. The next few weeks will be hard but we can only move on if not for myself but for Ryan. Some times I focus so much on Karley and what I should have done and wish I could do its just crumbles my soul. The hate I have for Cancer is more than anything Ive ever hated in my life. We all need to fight for the cure. For everyone young and old. There just has to be a way. I'll try to keep in touch more. Thanks for still checking in on us.
Wendy

Tuesday, January 10, 2006 6:42 PM CST

This is Wendy, I know it has been a while since I've wrote. It is so hard to explain sometimes how I feel. Somedays I try not to think about everything just to give my mind a break. It hurts me to write in this journal. Im tearing up now as I type. Its hard to confront your feelings and reality. I miss Karley more everyday. I work at the post office now and all day long as Im walking house to house I think of her. Everything around me makes me think of her, any little girl in pink, the blue sky that matched her eyes, even a strangers smile makes me think of what she could have been like.

I got a date for my board meeting it is Feb. 21st so it will be nice to finally get everything out that needs to be. The good news is only 15 percent if cases get as far as Karleys and I did it alone.

Well its off to bed for me I've been working 60+ hours a week for the last 3 months. I dont know where the days have gone.

One more thing before I forget. Christmas Day I was cleaning out my van putting everything in a box to trade it in for a car. When I got home I started sorting it all out when I find a photo album. I open it up and there the first picture was Karley cute as ever. Pictures of her before we knew she was sick they were the last ones taken of her. It was the best Christmas present ever.

Thank you for still checking in on me everyone and leaving such kind words.

Wendy Blouin

Thursday, September 29, 2005 2:14 PM CDT

Sunny days seem to hurt the most.
I wear the pain like a heavy coat.
I feel you everywhere I go.
I see your smile, I see your face,
I hear you laughin' in the rain.
I still can't believe you're gone.

It ain't fair: you died too young,
Like the story that had just begun,
But death tore the pages all away.
God knows how I miss you,
All the hell I've been through,
Just knowin' no-one could take your place.
An' sometimes I wonder
Who'd you be today.

Would you see the world? Would you chase your dreams?
Settle down with a family,
I wonder what would you name your babies?
Some days the sky's so blue,
I feel like I can talk to you,
An' I know it might sound crazy.

It ain't fair: you died too young,
Like the story that had just begun,
But death tore the pages all away.
God knows how I miss you,
All the hell I've been through,
Just knowin' no-one could take your place.
An' sometimes I wonder,
Who you'd be today?

Today, today, today.
Today, today, today.

Sunny days seem to hurt the most.
I wear the pain like a heavy coat.
The only thing that gives me hope,
Is I know I'll see you again some day.

Some day, some day, some day.
Kenny Chesney

Saturday, July 23, 2005 5:37 PM CDT

"YOU CAN NEVER LOSE THE ONE YOU LOVE AS LONG AS YOU ALWAYS LOVE THE ONE YOU LOST"

Friday, June 17, 2005 3:36 PM CDT

The one year mark passed last week. It was hard on everyone. Its scary to think it has been a year already. Where has the year gone? It seems like yesterday even now. I use to be so scared that I would forget Karley. Her laugh, her smiles, what she looked like, what words she use to say. I was afraid to lose her again. But each day that goes by she is always thought about and talked about where ever I go. It seem strange but I see it as she is being babysat by God and my grandparents and that in itself has help me get through the days. Theres no doubt in my mind I'll be with her again. That is a comfort that could only come from God.
Through out my life I've had many terrible experences. I'm a professional at blocking out pain and hurt. Ive dealt with a bad childhood (which had nothing to do with my parents) but that is when I learned how to block everything out and I lost trust in many people. I remember being five years old and praying to God to have my mother quit her job to stay home with me. I Prayed all the time for God to help me. When time went by and I was still being molested by a family friend I thought there cant be a God. Why would he let this happen to me? Why me? What did I do? Eventually when anything went wrong I just got even more angry with God. It seemed the hurt got wrose and wrose as the years went on. My best friend passed away 2 days before my 16th birthday and that is why I lost all hope. I guess what Im getting at is I have sooooooooooo much guilt in my heart for ever pointing the finger at God. People ask me how can you belive in God when people all around the world were praying for Karley to be cured of cancer. I just would like to say, yes I too prayed while I held her at the hospital for God to help take the cancer away and free her from the pain. But after a few weeks watching her struggle and as the cancer got worse I started to pray in a different way. I asked him to take her home free of pain. Let her have no more pain. I prayed that over and over and in the end that is what happened. Karley passed away with no pain she never cried she just layed there in my arms when God came for her. Best of all the cancer is gone and her head will never hurt her again. No more needles no more medicine no more pain. I think this year God has been in all of my familys lives. And anyone that knows my family knows we're not so spirtual. I truely belive that it was God giving me a "heads up" with Karley illness in my dreams. If those dreams never happened Karley may have passed away at home and we would have never known why, which would have everyone having the curse of the " I should have, and Why didn't I"
I would just like to say Thank you Karley. You have forever changed me. I'll love you forever and I will see you again. Also Thank you God for giving me another chance and forgiving me for all that Ive said and done in the past.

Tuesday, May 17, 2005 9:21 AM CDT

One year ago today our lives were changed. At this very hour I was bring Karley to the hospital for her first CAT scan. I still remember that day so clear as if it was yesterday. I remember leaving the hospital and going back to Karleys doctors office to get the CT results. I was crying all the way there I had known all along what those results were going to be this was just for everyone else to know.
When I arrived at the Doctors office everyone was there waiting for me. The look on everyones face of shock just tore my heart apart. The tears wouldn't stop coming, my throat squeezed so closely together I could barley breathe, my heart hurt of a pain I have never had before. I just held Karley so tight and closed my eyes wishing it was just a terrible dream.
There is a tumor in her lower part of her head the size of a large egg, she needs and emerengcy surgery we are sending you to Portland. Then my anger kicked in and I blew up on her saying I knew she had a tumor for the last month. She said nothing. I then asked to call my husband Mike and my father.
I sat there with the phone in my hand trying to remember what I was doing. I called my husband at work and told him to met me at the doctors office. That was all that was said he just hung up the phone and asked no questions. I kept trying to dial my dads work number one that I dail everyday and my fingers were shacking so bad I must have hung up ten times. Then when I finally reached him I just said "Dad she has one" it was silent for a second then he asked. "Where are you"
I replied "I dont know" It was so strange I couldn't even think of the name of the doctors office.
Everything else from there is just a blurr. But through it all Karley just smiled. Smiled smiled smiled thats what she did best. That is what made her so special. That is what makes it so hard to say goodbye. All around my house are pictures of Karley at least 5 on every wall. In each picture she just being the Karley I remember most. Karley was ready for the world with no worries just happiness. Nothing brought her down, not even the Cancer. We all miss her so much! These next few weeks are going to be tough on everyone. Its just amazing how its comming up on a year now since Karley passed away, when the memories are so clear and crisp and the feelings that come with the memories still sting like open cuts.

Friday, March 25, 2005 9:54 AM CST

What can I say? Its been awhile since I've updated. Sometimes it just hard to try to explain how you feel. Each day you wake up not knowing how your emotions will trigger. Somedays are great others are not. I still think all the time "what went wrong?" Last year at Easter Ryan and Karley were outside looking for eggs in the yard. This year there will be no looking for eggs outside because of all the snow, I guess that may be good for me because of the memories I have of Karley from that day last year.

I still dont have a date for the board meeting yet. But I will be sure to post as soon as I get one.

Thank you for still signing the guest book. Its nice to know people care.

Thursday, February 17, 2005 9:43 AM CST

This morning was very tense I was so nervous on what to say for the radio. Overall I think it went really well. It was really strange because when I woke up this morning I turned on the radio station that I was going on and the first voice I heard was Tom Bowens. He was talking about Ben pre- recorded for ST. Judes. Just wanted to say a big THANK YOU to Rosie! I heard on the station that you donanted in memory of Karley. Thanks again.
Wendy

Wednesday, February 16, 2005 10:33 AM CST

Well I have some great news....the board is taking my case to the next step and I will get to say my peace in front on the board and the doctors. Finally somebody will listen to me! Even if the board decides not to do anything further, to me I have all ready won because I will get to say my peace to the doctors that I've been wanting to say for 8 months now. Also tommorrow morning at 8:00 am I get to be a guest on a local radio station here (99.9 the wolf) to tell Karleys story and help raise money for St. Judes. Thank you all for the support and prayers. Please donate in memory of Karley to St. Judes! You can donate online at 99.9thewolf.com. Or you can call in and donate (207)797-0780
Thank you all.
Love Wendy

Thursday, February 3, 2005 2:41 PM CST

Sorry its been so long since I've updated. Everything has been going okay. Ryans birthday is Feb.5 (right around the corner) The poor kid has been through so much and Im so proud of him. I look at him all the time and see peices of Karley, they looked so much alike, with different color features. Everyone has been asking Ryan what he wants for his birthday, of course he named off every toy made. Last night though he asked to call my dad, (who had called Ryan that day to ask what he wanted for his birthday.) So I dialed the number and walked off and let him have his privacy. That night when I saw my sister she asked me if I knew what Ryan called and asked for? Lori told me Ryan called and said "Lori can I talk to Grammpa?"
Lori told him that he was sleeping. So Ryan said well tell Grammpa I know what I want for my birthday. And Lori says..."you do, what?"
Ryan says "tell Grammpa I want my baby sister Karley for my birthday, she is in heaven so he has to go and pick her up." My sister didn't know what to say but I guess Ryan told her to make sure she told grammpa.

Ryan misses her so much and sometimes he will be in her room just sitting there with tears in his eyes. The last time he saw Karley she was in the special care unit after her first surgery.

Last night Ryan asked me for Karley for his birthday too so I told Ryan pray to God to let Karley visit you in your dreams. I told him that when you have dreams of Karley that is her way of saying hello and visiting him from heaven.

I've tried to have dreams of her myself but so far have had no luck. The only thing that has happened was so real and it makes me smile when ever I think of it. I was sleeping a few weeks ago and I had only been aleep for like 30 minutes. I saw nothing in my dream but pitch black but as clear and loud as day I heard Karley saying "da da da da da da" Fast and cute like she always use to. I could feel my self smileing because I knew it was her and I woke up so quickly because it was so real and when I did wake up I was still smileing. It was so strange, I hope I get to hear or see her in my dreams again soon.

Ill try to update sooner this time. Please keep Ben Bowen in your prayers! www.bens-story.com

Thursday, January 6, 2005 1:24 PM CST

Sorry it has been so long since I have updated the journal. Thank you for still checking in on my family and I. They say after 6 months it gets better, I still have not had that yet. Each night is the same for me I lay in bed and just think of Karley and the whole terrible time in the hosptial. My mind just rewinds it over and over and then the "what ifs" come into play. Its almost like a terrible nightmare that you just cant wake up from. There are a few really bad memories that replay and make my stomach turn. One is when it was Karley, Mike and I in a waiting room in the basement of the hospital. It was Karleys first surgery to remove the tumor, at the time we had no idea it was ATRT. I had her in my arms in a rocking chair and she was so happy. Smileing and being her cute little self. When Dr. Wilson came in to get her she was giving all she had to hold on to my shirt. She just screamed and screamed, Mike had to peel her off of me and hand her to the Doctor. As we walked away and he walked away with my little girl Mike and I turned around and there she was facing us with tears rolling down her face and calling our names still kicking and screaming trying to escape. That was a really hard time for Mike and I and really that is the day we had lost Karley because she never was the same girl after that.
Then there is the last day that gives me the worst guilt and sadness. Karley was in SCU (skilled care unit) It was after the stroke and she started having sezuiers so she had to have another shunt placed in her head for the spinal fluid to drain again. Mike and I had gone home that night because there was not enough room in the room for us. We knew she would be in good hands in SCU in that unit a nurse was in the room at all times and each room was had a outer glass wall with the doctors 5 feet away. That morning Mike and I were getting ready to head to the hosptial (about a half an hour drive) the phone rang and it was the Dr Wilson asking us for our consent for Karley to have another surgery because the shunt they had placed was clogged and they needed another shunt put in ASAP (this would have been the 3) I was very confused and said yes of course if that is what she needed hung up. A few minutes later Dr. Gunnoe called and asked if that is really what I wanted to do because there was no saying if that one would clog too. I paused for a minute and my heart squeezed so hard. I knew that it wasn't fair for Karley to be going through so much and by then if I keept trying it was for selfish reason. So the 3rd shunt was not placed and we were told to hurry to be by her bed side. When we arrived at the hosptial the doctor told us that Karley had not woken up from the surgery the night before. So I said "another words she is in a coma?" The doctor said "yes" I couldn't belive this it was so hard for me to sit there in the room with my daughter laying there with her pretty blue eyes shut and hooked up to a breathing machine. Then a few hours later I had to make the choice of turning off her machine. I still can remember holding her those last 30 minutes as she fell apart. Most of the family was there Karley was in my arms and Mike was next to me holding her foot. I just sat there and the tears kept pouring down my face onto hers. It was hard not to look at the machine and watch the numbers slowly fall and the line fall flat. I just remember how cold she was getting and how purple her face and arms were turning each minute a part of me parished with her. The room was silent all you could hear were tears and the clock ticking. At the end I asked the nurse to check her pluse about 5 times because I was in such a shock. I even checked my self and had to ask the nurse to recheck because I was hearing what I was hoping for. And that was the worst day of my life. The guilt of having to tell some to take the air my daughter breathed was not a easy one to make. As I write this now I still feel the same way I did on that day! The tears keep coming and I still have the hurt inside that invades my heart and brings me to my knees. It has been 7 months now and theres not a day that goes by that I dont cry and miss her. I have a huge picture frame with about 100 pictures of her in it. Each picture that I look at I can remember that day clear as ever. I remember being behind the camera and saying Karley say cheese. She loved the camera! She never had a bad picture. For a girl so sick she still smiled. Even when she would puke and puke after words she would get up and start to laugh and smile. She is a little girl that will alway be missed.

Sunday, December 26, 2004 12:14 AM CST

Merry Christmas! Tonight went very well as planned. My father and sister and I went up to Maine Medical Center at the Barbra Bush's Children Hopital and brought gifts to all the children. It was a great feeling seeing the looks on the kids faces when they got their gifts. I hope to upload some pictures soon. Here is a poem that I wrote and gave to them in their bags.

I once was in your shoes,
Not so long ago.
May 17, 2004
My daughter was on this same very floor.

I remember feeling sad and blue,
Stuck in this room wrried like you.
With my daughter between my husband and I,
All we could do was hold her and cry.

My daughter was my strenght
And she is till this day.
Even though the cancer has taken her away.

She has filled my heart with love
Showed me what life was all about.
Caring doesn't end with your own family,
It's taking time and reaching out.

Merry Christmas! I would like your child to have this gift in memory of my daughter Karley Elizabeth Blouin who passed away from a rare Brain Tumor this year.

Sincerely
Wendy Blouin

Also there is an urgent prayer request for my Sister-in-law Jodie. She is having some complications with her pregnancy. She is now in the hosptial. Thank you.

Friday, December 24, 2004 6:25 PM CST

Tuesday, December 14, 2004 8:39 PM CST

Well I got back the letter that Dr. Glass and his henchmen wrote to the Board of Medicine. To make a long story short of course they called me a lier, that I should thank Dr. Glass for "putting together the puzzle" with Karleys brain tumor. Dr. Ass wrote that he never denied Karley a CT scan, that he told me that he wanted to see Karley walk and so on. Im not sure what to do now, I guess just wait and see what the Board has to say. It is my word against theirs. Let God strike me dead now if anything I wrote is a lie! I remember what was said at those appointments it haunts me daily. For them to say that I never was concerned of a Brain tumor makes me go in an outrage. Its ashame that there are doctors out in this world that cant admit when they are wrong. I was just starting to forgive them intil I read this letter. I just cant belive what I read. Ill let you all know what happens from here, Thank you all for supporting me. Just so you all know I put in a case with the state for the principle of the matter, as a reward to me I dont get any money or my daughter back. The only thing that Im really looking for is a SORRY and hopefully in the future they will be aware that these types of things happen. All I can do now is sit and shake my head in disappointment! I hope that when they lay in bed at night the guilt of lying about how well they treated a child that really was deathly sick haunts them for the rest of their lives, like it does me!

Friday, December 10, 2004 6:54 PM CST

Maybe she was an angel
Who learned to fly before she walked.
Maybe she was an angel
Who I'd love to hear just talk and talk.

Maybe she was an angel
And here on Earth had broken wings.
Maybe she was an angel
Left the Earth for better things.

Maybe she was an angel
Filled with sweetness, kindness, and love.
Maybe she was an angel
From only the best, God above.

Maybe she was an angel
To show us how short life can be.
Maybe she was an angel
Sent from Heaven just for me.

Maybe they are all angels
To love and cherish you through out each day.
Maybe they are all angels
Each one very different but in the end all the same.

So hold on to your angel
Let them know that you care.
Just take a look around you....
Angels are everywhere!

By Wendy Blouin
12/10/2004

Thursday, November 11, 2004 8:31 AM CST

Good morning world. The past week I've had so many things on my mind. There are a number of tasks that I must achive in the next few weeks. Im asking all of you to help. First I would like to raise as much money as possible from now to christmas. All the money that I raise I am going to buy chirstmas gifts for the children that are battleing Cancer at The Barbra Bush's Children Hospital, Portland Maine. (where Karley stayed) Im in the process of making buckets for donatations that will be placed in some stores that I know personally. My sister and I will be going door to door also for donations. And last but not least I will be having a bake sale (watch out lol) at the local high school. Hopefully that will give me enough money but any extra that you may be able to give this winter would be great.
The other project that Im working on is giving Karley some justice from her doctors office. I will now how to face the doctors office alone (without a lawyer) The secret weapon I do have though is my father (as long as Ive known him hes never backed out or down from anyone) My dad is the one who at the end who told me just because they have MD in front of their name, doesn't make them right. If it wasn't for dad I would have been sent home again with the wrong diagnoses. Together we will fight them in court. I am aslo gathering people to pickit in front of the doctors office building with me. Ive tried to get my story out in the news but because I dont have a lawyer I was turned down. The only way to get it out in the news is to pickit. It seems to me that everyone is on the doctors side because they are afraid to be sued. As I said before EVERYONE needs to know the symptoms and the wrong doing that Karley went through, if it helps even one child in the next 10 years my fight was sucessful! Thank you all for helping me.
Any donations please send to Karleys fund. Address is on top of the page. Please make this chirstmas extra special for the kids in maine that fight for their lives daily.
Also please remember Ben Bowen and his family in your prayers tonight. The road they all face is a tough one, I know by first hand. You can go to their website at WWW.Bens-story.com
Thank you all
Love Wendy

Friday, November 5, 2004 11:07 AM CST

I would like to share the letter I wrote to the Maine Board of Licensure in Medicine. Please let me know if there is anything else I can do.

I am writing to you today for the injustice my daughter had to endure during the last few months of her life. With all due respect to my daughter Karley Elizabeth Blouin, I would like to open a case against several doctors at the Pediatric Associates in Lewiston Maine. They failed to acknowledge all the symptoms that Karley displayed preceding her death.
Since she was born I brought Karley to Pediatrics Associates. In February of 2004, at her 15-month old check up, I explained to the doctors that I was concerned about her. I felt that she was not at the same learning level that my son was at that age. I explained to them how she was not walking yet and when she tried to walk along furniture she was very unstable. They gave her a physical and said not to worry because every child walks and learns at different stages. During this physical it was noted that her height and head circumference were nearly off the charts. Three nurses came in just to re-measure her head. Since Karleys one-year check up her head increased from the 50th percintile to the 90th in just three months. This should have been a "RED FLAG" that something was wrong.
In April of 2004 Karley started to act very unusal. She was finally walking but very unbalanced and she would walk right in to walls. I was very worried because not only was she walking into walls, she had developed a tilt in her neck and was unable to move her head to one side. For about a week I thought it was possible because she fell and had a stiff neck, needless to say it got only worse. Even to rub her neck seemed to put her in sever pain.
On April 21, 2004 I brought Karley to Pediatrics Associates. I told the Doctor that she was walking into things and about the tilt in her neck that was causing her pain. I also told the Doctor about how Karley was always rubbing the back of her head and everyone else's. I remember sitting in the Doctors office with Karley on my lap when a thought crossed my mind. Two weeks earlier I had gone to the emergency room at ST. Marys Hospital because my head was hurting so bad. At the time I was unable to move my neck. The first thing that the doctor asked me was "Has anyone in your family ever had a brian tumor?" At the time I said "Of course not!" They performed a CAT scan on me immediately. This is quite significant to what was to come.
Karley's doctor explained to me that she what is called Torticollis. He told me that many children get Torticollis and Physical Therapy would fix her problem. I asked him if there was a possibility that it could be a brain tumor (due to my previous experience in the ER.) The doctor looked me straight in the eyes and said, "There is no possible way that she could have a brain tumor!" Those words will haunt me for the rest of my life because it was a brain tumor that caused her death.
I went home assured that she had Torticollis and she would be fine. When I got home I browsed the Internet and read several sities on Torticollis. Many sites that mentioned the symptoms aslo referred to cases of brain tumors causing Torticollis. My heart went up into my throat! Everything my daughter was having pointed to a brain tumor. (Torticollis, unsteady walking, and unsymmetrical facial expressions)
I took Karley to on vistit of PT. She explained to me the different exercises I had to do with Karley three times a day until her next appointment. The exercises consisted of forcing her head to move right to left many times. also to make her watch TV strapped into a car seat sidways forcing her to have to turn her head on her own to see her show. Karley hated her exercises, she screamed, squirmed, and each time had tears that streamed down her face. This only seemed to make things worse.
Karleys's Torticollis was getting progressively worse. She was continuously walking into things. She started throwing up ever night before bed and when she woke up in the moring. (Again yet another symptom of a brain tumor!) I brought Karley to the doctors and told them the PT wasn't working, she continued to walk into walls and now throwing up each morning and night. I asked again if it could be a brain tumor, they again told me that there was no way. This time their diagnosis was that she still had the torticollis combined with the flu bug and that she is trying to grow into her "new feet!"
For weeks that Doctors and I went back and forth regarding this issue. Each time I asked if it was possible that she had a brain tumor. I also requested a CAT scan and was denied every time.
On May 17th Karley vomit had blood and was extremely severe. I was terribly worried. I went to Pediatric Asscoiates quite furious and demanded at CAT scan from DR. Glass. I told him that I thought she had a brain tumor and that I had a right to get one immediately! Dr. Glass respnse to that was "if I had to send children to CAT scan every time a mother was worried we would be sending kids there all day!" He followed up by saying rudely that she had Torticollis and the flu, and the red that I saw in her vomit was not blood, it was something she ate.
I then started to question his judgement, which offended Dr. Glass. I asked him to watch her walk. (NO doctor had ever had Karley walk in front of him or her ever!) He watch Karley's wide steps and she walked into the door jam at the end of the hall. After that I again demanded a CAT scan and if it was not a brain tumor I could as least sleep at night knowing that it was ruled out. Dr. Glass then said "fine I'll give you a CAT scan, but I can tell you now a brain tumor is not causing her problems!'
Two hours later I took Karley to ST> Marys Hospital to get a CAT scan. When the results came in the lady told me to return back to Pediatrics Associates and they could explain the results to me. I knew what that meant. When I got there Dr. Glass's wife Linda told me that she would explain the results because Dr. Glass was in a "meeting" Karley had a large posterior fossa brain tumor. The location of the tumor was in the top of her central nervous system, which was causing Karley to have Tortocollis, unsteady balance, and throwing up. The tumor was so big her spinal fluid was building up in her brain. Karley's body was thrwoing up to relieve her crainal pressure. For informational purposes, her crainal pressure at the time of surgery was 110 when the norm is 50.
The hour and a half that I was there I never once saw Dr. Glass. I believe that he knew I was right and could not come out to say it. His lack of professionalism was disturbing. I expressed my concerns in front of many other doctors and patients and pointed at Mrs. Glass explaining to her that I asked if she could have a brain tumor for the past 6 weeks!
I strongly feel that those Doctors need to be held responsible for my daughter last few months of life. They failed to acknoledge her symptoms or listen to my concerns. My daughter Karley passed away from Cancer on June 8, 2004. She went threw months of pain and suffering before she was even diagnosed with the brain tumor. After finally being diagnosed she went through a 12- hour operation, a second surgery for a ventriculostomy, had several seizures, a blook transfusion, a stroke, ventriculitis meningits, and finally a coma.
Not once did my Pediatricians call to check up on Karley the three weeks that we were at Maine Medical Center. It was disenchanting to see their lack of sympathy and consideration. I would like to see them held responsible for the reprehensible care Karley received and for the multiple misdiagnoses. They should be forced to take accountablility for their actions and we are hopeful that you will faciliate this porcess. Maybe the next time they see symptoms that may be associated with a brain tumor it will be reecognized and looked into.
Cancer does not discriminate, it can strike any child at any time; it could be your own! I'm asking you to put yourself in my daughter's shoes for a moment and think about what she went through. With cancer, as you probably know, the doctors are typically concerned about the "quality of life," they will never put a number on how many days or years you will live or IF you will even live. Karley's quality of life was at its worse. In my eyes this was largely preventable. She was refused treatmen that could have diagnosed her earlier and at least kept her more compfortable during the last few months of her life. Wouldn't you want that for your child? Thank you for reading my concerns and I hope to hear from you soon. Please do not hesitate to call me with any questions..
Sincerely,
Wendy Blouin

Ill never stop fighting for you Karley; you will open the worlds eyes and they will hear your story!

Saturday, October 30, 2004 7:17 PM CDT

My precious baby girl
We planned you for so long
Every night I dream of you
And wish you were not gone.

Ryan says "Dad call God!"
Tell him to bring my princess home
If only it was that simple
Cause I'd be on the phone

You smiled so sweet
We laughed, and we cried.
Now my baby girl has no more pain in her eyes.

You've been so brave Karley
The bravest that I've seen
My baby girl
Poked by so many things.

You will always be our baby
That will never change
You have touched our lives forever
In ways that can never be explained.

So rest in peace now
My sweet Karley
No more pain you have to bare
Just watch over us from Heaven
Cause soon we'll all be there!

We love you Karley!

Friday, October 29, 2004 8:37 PM CDT

The day of Karleys viewing a women I've never met before came up to me and gave me a poem. She said to me "you don't know me but I lost my child too. The day of her viewing a women that I never met gave this to me, now Im giving it to you"
Till this day I haven't read it so tonight I would like to share it with you.

Little Angels

When God calls little children to
dwell with him above,

We mortals sometimes question the
wisdom of his love.

For no heartache compares with the
death of one small child,

Who does so much to make our world
seem wonderful and mild.

Perhaps God tires of calling the
aged to his fold,

So he picks a rosebud before it
can grow old.

God knows how much we need them and
so he takes but few,

To make the land of heaven more
beautiful to view.

Believing this is difficult still
somehow we must try,

The saddest word mankind knows will
always be "Goodbye."

So when a little child departs, we
who are left behind,

Must realize God love children
Angels are hard to find.

Wednesday, October 6, 2004 5:48 PM CDT

The Mother
By: Wendy Blouin

Don't feel sorry for the mother,
Who lays in bed and cries all night.
Don't feel sorry for the mother,
Who clings her pillow, oh so tight.

Don't feel sorry for the mother,
Who's memories haunt her everyday.
Don't feel sorry for the mother,
Who's baby girl passed away.

Don't feel sorry for the mother
Which Cancer killed her childs dreams.
Don't feel sorry for the mother,
Who wanted her daughter to have everything.

Don't feel sorry for the mother,
When you see her eyes filled up with tears.
Don't feel sorry for the mother,
For she was confronted by an ultimate fear.

Don't feel sorry for the mother,
Who was there through thick and thin.
Don't feel sorry for the mother,
Who held her daughter till the end.

Don't feel sorry for the mother,
Who's life will go on sad and blue.
Don't feel sorry for the mother,
Just be thankful she is not you!

Wednesday, October 6, 2004 7:58 AM CDT

Thank you all for writing to us, it means a lot to know people still care. Im starting to write a book about everything Karley went through. Ill keep you all posted on how it goes.
Wendy

Sunday, October 3, 2004 9:30 PM CDT

Hello everyone this is Wendy. Today is the first day that Ive check Karleys site since Friday. Thank you all so much for writing in the guestbook, you have no idea how much it means to Mike and I just to know that people still care. Thank you Tom and Jen for putting in the link, you guys are great! (Bens_story.com)
Friday was very hard on everyone in the family. Mike, Ryan and I went to the cementry and her grave was filled with new little gifts. Teddy bears, angels, little notes and we brought her a balloon.
Losing Karley was by far the worst thing that has ever happened to me! Alot of times I sit and wonder why everything happens to me. Not to sound like Im a cry baby but I haven't had a break yet. I was molested for years by a babysitter, I never even told my parents intil I was 18 years old. My mother left my father on my 14th birthday, in which I didn't see her for a few years. Then my 16th birthday my best friend in the whole world fell to his death from a 150 foot cliff in Oregon. Thinking it couldn't get worse on my 18th brithday I had to go to my grandfathers funeral who meant the world to me. Then this year it was Karley. (We got the name of her Tumor on my brithday ATRT.) Then the day after Karley passed away Mike and I had to make all the funeral arrangments on our wedding anniversary. Boy...I sure dont know what the future holds and Im almost afraid to find out. Thank you all again for checking in on us.

Monday, September 20, 2004 7:57 PM CDT

Hello everyone this is Wendy. Sorry I haven't been writing in the journal much. Most days I dont know what to say. Really what is there to say? I miss Karley each and everyday. She never leaves my mind. Her birthday is coming up, my princess would be turning 2 on Oct. 1st it hurts just to think of it. I think my reality is finally kicking in, I hate it! At least twice a day I'll be thinking of her and it hurts so bad inside that my throat closes up and I can barley breath. Ive never felt so much pain in my life. For a while it was somewhat getting better but now its just getting worse. I got a part-time job a few weeks ago at a tanning salon. They say it helps depression, Ive been in there every other day for the last 2 weeks, I haven't seen a diffrence. Ryan is doing fine. He started Preschool the first week of Sept. He loves it. He's finally around other kids his own age. He has been very bored without Karley around. They use to play so well. He talks of her everyday. He knows when Im down, he will come over to me and hug me and tell me that Karley is in heaven with God, and Nook (our old dog) Well thank you everyone to check up on us, it sure means alot to be in others thoughts and prayers. Ill try to write again soon.

Thursday, September 16, 2004 9:02 PM CDT

Karley I have been thinking of you non-stop latley. I was driving home from work tonight when this song came on. So my dear Karley this is my long distance dedication to you. Missing you more each day! LOVE MOM

One More Day

Last night I had a crazy dream

A wish was granted just for me

It could be for anything

I didn't ask for money

Or a mansion in Malibu

I simply wished, for one more day with you

One more day

One more time

One more sunset Karley, maybe I'd be satisfied

But then again

I know what it would do

Leave me wishing still, for one more day with you

First thing I'd do, is pray for time to crawl

Then I'd unplug the telephone

And keep the TV off

I'd hold you every second

Say a million I love you's

That's what I'd do, with one more day with you

Leave me wishing still, for one more day

Leave me wishing still, for one more day

By: Diamond Rio

Thursday, September 16, 2004 9:02 PM CDT

Karley I have been thinking of you non-stop latley. I asked was driving home from work tonight when this song came on. So my dear Karley this is my long distance dedication to you. Missing you more each day!

One More Day

Last night I had a crazy dream

A wish was granted just for me

It could be for anything

I didn't ask for money

Or a mansion in Malibu

I simply wished, for one more day with you

One more day

One more time

One more sunset Karley, maybe I'd be satisfied

But then again

I know what it would do

Leave me wishing still, for one more day with you

First thing I'd do, is pray for time to crawl

Then I'd unplug the telephone

And keep the TV off

I'd hold you every second

Say a million I love you's

That's what I'd do, with one more day with you

Leave me wishing still, for one more day

Leave me wishing still, for one more day

By: Diamond Rio

Thursday, August 26 , 2004 9:24 PM CDT

Hi this is Karley"s granddad Mike. Summer is going by so fast, Karley has been with jesus over 10 weeks and we miss her so much. I miss her smile ,her laughing,I just miss her being with us everyday.I kiss her Picture on my refridgerator every morning on my way to work. Wendy went to visit her relitives in washington st and had a good time. Karley has a new little friend Hanna who passed away recently from the same kind of brain tumor. So i hope Karley and Hanna are gaurdian angles for big Ben bowen who is fighting hard to beat this horrible tumor. Please pray for Ben and his wonderful family, as well as little hanna's family for thier loss as well. I'll close for now,God bless Karley,Hanna, Ben and all the children suffering with their disease.and please say a prayer for Mike and Wendy who may have forgot how much love they had for each other. Losing a child is very hard. I pray they dont lose each other also. I love both of you and ryan Wendy and MIke. Remember Karley is watching both of you, dont let her down, if you both search your hearts you'll find the love you had before Karley became ill. I love you guys and pray for you marrige.

Monday, July 26, 2004 5:09 PM CDT

The strangest thing happened to me the other day, something told me to find a book on losing your child. So I went to the Bible Book Store and asked the lady to help me. She handed me a book called "When a Child Dies" on the back it didn't say how the couple lost their child but i figured it was good enough. I bought the book and read it when I got home. As I started reading it was about a pastor whos 3 year old daughter had a brain tumor "medullablostoma" similar to Rhabdoid. He told about the pain his daughter endured and I found myself reading almost the same story as my own. There was a part in the book that said he had a dream a year earlier about somebody in his family having cacer. I couldn't belive it because when Karley was 3 months old I had a dream that scared me to death but also left me in peace. I remember it so vividly Karley, myself and my grandmother (who died of cancer a few years ago) were all on a mountain. My grandmother was there to take Karley to heaven with her, I told Karley it was ok and up her and my grandmother went. Now at the time of this dream i was confussed because I thought it was the rapture, and I was left behind but I was glad that Karley got to go. Now I know that God was preparing me for what was to come. Because in my dream there was gramma, who died of cancer and my daughter going to heaven. So I know that is where she is now, with gram in heaven. Thank you God.

Monday, July 19, 2004 9:09 PM CDT

Hello everyone this is Wendy. The time seems to go by so slowly, not a day goes by without Ryan asking for Karley. It is so hard for me to even try to explain how I feel. I have my good days and bad. I think all of us have tried to keep busy. The worst times of all are at night, Mike and I both have trouble sleeping.
Well I will keep you all posted on our family. Me and Mike would like to thank everyone for all the support and prayers! Please feel free to contuine to pray for us, I think we all could use it! If everyone could also pray for Little Ben Bowen, he and his family need the extra support also. WWW.Bens-Story.com Thank you again everyone.

Sat July 3, 2004

This is Karleys granddad mike
Time is starting to heal the pain from our loss of this beautiful baby girl. I dont know if the pain ever really goes away. Wendy is doing ok and ryan misses his little princess Karley,we all miss her terribly. Im so proud of Wendy and my other daughter Lori and my son Cody for helping each other through this hard time in life.
Karley's brother ryan who's three years old has been such a good boy through all this.I sure love that little guy. I feel so bad he lost his little girl. He truley loved that little girl as we all did. I only pray he will be able to remember her throughout his life the way we all will. I say a little prayer for Karley everynight. I also pray for my girl Wendy, she's been through hell and back this past 2 months. I really am blessed to have 3 of the best kids I could possible wish for ,I love them all and are so proud there my kids.
Im truley blessed to have been this lucky. Please go to big Ben's site below and write to their web site and give encouragement to Ben ,hanna and all the kids at st. Judes suffering with cancer. thank you to everyone supporting Wendy and our family.

Thursday, June 10, 2004 7:42 AM CDT

Hi this mike ,Karleys grandpa, i wanted to let you all know karley's not suffering anymore. shes with jesus .I thank everyone for all their support during these trying times.wendy is doing as well as expected, I love my daughter so much ,she has made me so proud as a dad to see how much she loved her little girl and stayed by her side 24-7 throughout her illness. She was so strong through the wake and funeral.I think all the support helped her also.Thank you to all who have helped my daughter. Thank you to the bowen family and all our prayers are with Ben who with gods help will beat this illness .Please go to ben's story on link below. thank you everybody God bless !!

tuesday june 8th

This is karley's granddad mike, I just got back from the hospital with wendy and mike and Im sorry to say my grandaughter karley passed away at 4:25 this afternoon, we were all there and wendy was holding her little girl in her arms while her dad was holding her leg. I really dont know what to say right now kinda in shock. this was one of the sweetest little girls to walk this earth.thank you all for all your support to my daughter and son in law and baby karley. please continue to give my daughter and son-in-law support,the really hard part is coming ,to bury your baby. any help financally would be greatly appreciated. please keep writing to little bens story and support the bowens cause we trully know what their going through. with all our love thank all of you so much for your care.

Sunday, June 6, 2004 3:07 PM CDT

We have just gotten back from the hospital. Karley is now in a deep comma. If she gets out of the comma by the end of the week then it will be some what hopeful. If not she wont be able to be in the protocal for the cancer treatment. Will keep everyone posted. thank you all for your suport.please say a prayer for little ben bowen on the link below.his family needs all your support also.

Sunday, June 6, 2004 8:18 AM CDT

Last nights sugery went well. Her brain pressure what 110 when the normal brain pressure is 50. Come to find out she now has Spinal Megintisis. I will post a new update later today.

Saturday, June 5, 2004 4:53 PM CDT

Karley just went into emerengcy surgery. She had been having seizers all day. Aparently the spinal fluid in her brain has not been asorbing within her body as it should. Now they are saying they are not sure if her stroke has grown. Praying for Karley is welcomed! We need all the support for her as possible. Thank you.

Friday, June 4, 2004 5:09 PM CDT

Last night Karley seemed to be in a little more pain than normal. They started a new med for her called valuim. Today they did a blood count on her and found out that her red blood cells were really low. Karley had her first blood transfussion today. Today her eyes were not so scattery from the stroke, hopefully soon she will regain herself. Seems to me that she backtracked to a 7 month old. Cant wait to she her smile!

Thursday, June 3, 2004 9:56 AM CDT

Last night Karley did ok, she vomitted only once. But it seems to me that she is in more pain than usual. If i change her diaper or pick her up she screams. There is something wrong with her eyes they go in all directions, it seems to be bothering her because she'll squeeze them tight alot. It is so hard for me to stay there with her alone, each time she crys, each time she vommits, each time the doctors come and she starts to cry, kills me. I lay awake all night just listening to her breathe. Hopefully she will be coming home soon, so we can get to the next step of recovery. Thank you all that writes a message, it is nice to know that there are people who care.

Monday, May 31, 2004 8:54 PM CDT

Happy Memorial Day! Sorry I haven't updated in a day or two. Today Karley looks a lot better than she did over the weekend. They took the brain tube out on Friday, which made Karleys head very swollen. Then during the night from the brain fluid, made her eye also swollen. Today she looks a lot better, the swelling has gone down significantly. Thankyou everyone who has signed the guestbook and visited Karleys page. We all appreciated it.

Sunday, May 30, 2004 9:18 AM CDT

Monday May 17th, my daughter Karley was diagnosed with a Brain Tumor. After months of common symptoms that could've been anything, her neck started to tilt to one side. I brought her to the doctors and they first diagnosed her with Torticollis, which causes the head to tilt to one side. This of course was because of the brain tumor which was located on her brain stem and pushing it to one side. Karley then started vommiting daily, about 2-3 times a day. I knew something else was wrong. I had questioned if it could possibly be a type of brain tumor from which I read online that was related to Torticollis. The doctor kept reassuring me that there was no way that was what it was. About a month later I went back and demanded a CT scan, which was diagnosed to be a brain tumor. That day my husband and I brought Karley to Maine Medical Center where on May 20th 2004 Dr. Wilson performed brain surgery on her. She had a total gross resection. Then the tumor was sent to Boston for diagnosis which came back to be a Rhabdoid Tumor. This type of tumor is the rarest of them all. Out of all the tumors that are diagnosed yearly in children, there's a 1hance of getting this type. Karley is now waiting for a team of doctors to decide a treatment plan. My dad contacted a young couple from St. Judes hospitol who's 20 month old son Ben is being treated for the same type of tumor. He also has a website called "Bens Story" and took the time to contact me and talk over an hour on the phone to give me hope and to know that people really care for children even if the child isn't their own. I really am grateful for their thoughts and prayers from him and his wife, who's birthday, May 26th is the same as mine. We both have a 3 year old boy and 20 month old babies going through the type of illness. It's quite odd how similar our lives are. Just this past Friday, May 28th, Karley had a stroke and was sent back down to the Special Care Unit. She had swelling in her head, and her eyes were very swollen. So far today she is doing farely well, I will let you all know of any updates. Thankyou all for helping us, knowing how many people care help us get through this every day. Thankyou for taking the time out of your life to read Karleys Story. I will be updating this page daily if I have the time. Thankyou again.
Sincerely, Mike and Wendy.

Sunday, May 30, 2004 8:48 AM CDT

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