MY FRIEND KELLY NEEDS EVERYONES HELP!!! HER 14 MONTH OLD DAUGHTER KARLIE WAS DIAGNOSED WITH THE BRAIN CANCER EPENDYMOMA. SHE HAS DONE BEEN THRU 2 SURGERYS, CHEMO, AND NOW NEEDS RADIATION. THEY LIVE IN BALTIMORE, MD
HERE IS HER ENTIRE STORY FROM START TO NOW:
Monday, August 27, 2007 Please Pray for My Princess
One August 24th my entire world changed. For anyone who knew Karlie has been sick since Aug. 12th. Just throwing up once a day. We went to the doctors on thursday Aug. 16th and they said it was just the flu. We went to ocean city. She had a wonderful time but threw up a lot on saturday night. Suday we came home. Monday she started throwing up more. Not keeping anything down. We immediately took her to the ER. They did test and found NOTHING, they said it was just a stomach bug and they gave her fluids through and IV. They sent her home that day. They next day she was the same. Still throwing everything up. We took her back. They did the same thing. And just sent her home. They next day she got better, she was keeping everything down even food. The next morning (aug. 24th) she woke up and her eyes were crossed. We called the ER and they said she was probably just tired from being sick no big deal. I set up a doctors appt and took her in the same day. The doctor was unsure so she called another 1 in. That doctor held her head and said we needed to take her to the ER immediatly that it was menongitis. My world crashed. I thought there was no way she could have it. When we go to the ER around 1pm. They took her in for a CT scan. She came back in to the room. A few minutes later the doctor grapped me. She told me she needed to talk to me and took me into a room. She sat down and told me to sit down. I knew something wasnt right. It was just like you see in a movie when the doctor has bad news. She looked at me and i just said whats wrong. She said we found a brain tumor. I was in disbelief. Anyone who knows Karlie she is the happiest little girl, Mommys little princess. They flew her to DC Childrens hosptial aspa. That is were we are today. The did an MRI the next day and the nerosurgeon came to talk to my mother and i. He said it doesnt look good. The tumor is HUGE. It starts in the middle of the back of her head and goes down to her lower neck line. It is attached to blood vessels. They scheduled her for surgery right away for monday (today). They started the procedure at 9:38 am.
Please everyone pray for my little girl. She is strong and will make it through alll of this
Tuesday, August 28, 2007 A little update on KARLIE!
My world has completely stopped outside of this hospital. Inside I am dying. I want for one thing and that is for my daughter to get better. She is so strong and she doesn't even know it. I look at her and all I see is pain and I can't do ANYTHING to take it away. My heart is broke but I still have faith. I think there is a reason for everything. God gave her this because he knows she is so strong that she will over come this. My daughter is my world and I will NOT let anyone take her away.
She did well during surgery. She is still sedated from last night. She is getting another MRI now to see what is left and where it is. It is still wrapped around the brain stem. And they got 70% of it out last night. I just keep praying God will shrink it and it will just go away.
Its the hardest thing to know in the word that you cant do anything but pray. And i will never stop.
She is my angel and she will get through all of this. I will not leave this hospital until I bring my baby home.
The Nero Surgoen says it is ENORMOUS. She has a little tub in her head draining spinal fluid.
She has tried to open her eyes and move a little.
Every second I close my eyes I pray for my baby. I will not ever give up and I know she will not either...
Please keep praying!!! Dont ever stop! God WILL answer our prayers!
Wednesday, August 29, 2007 Can't give up on hope.
Yesterday was Karlie's 1st day after surgery. They took out her breathing tube. She had a bit of a hard time. It was so horrible to her my baby gasping for air and gaving trouble breathing. I got to hold her yesterday. For the time I got to hold her my world felt right again. She was in so much pain and is so scared. A few hours later she settled down. Her doctor that performed her surgery came in to talk to Butch and I. He showed me the MRI before and after surgery. I can not believe how big it was. Her poor little brain was so squished. There was so much pressure. Now her brain has the room it should. He told me the tumor is bleeding. Which is WONDERFUL! But this is all what he thinks. He wont know for sure until a few weeks and they will do another MRI. But he said if the tumor is bleeding than he got the main blood source of the tumor and it may just kill itself. Please everyone pray for that! That was the best thing I have heard. He got 70 % of the tumor out and hopefully the rest of it will just die off. She is still having trouble with her eyes. You can tell it scares her. Her eyes are crossed and they jump around. But he said it could just be from the surgery and it might settle down after the swelling goes down. She gets pretty fussy, but they are giving her morphine for the pain. Now all we can do is wait and let her heal. I will get to hold her again today, which is the best part of my day. The doctor said he thinks it is "Edenymoma" which is a type of cancer but he said it does NOT look ever aggressive. He said most likely no matter what she is going to have to get Chemo. She is so strong and she will get through this.
Please dont stop praying for her!
Friday, August 31, 2007 Update 8/31/07
Yesterday started out great. We got wonderful news. The Doctor whom performed Karlie's surgery came to talk to me. He said as long as things are looking good and Karlie can get the drain out of her head (its draining spinal fluid) then she could come home next week sometime. I was the happiest I have been in a while. He said she will need chemo but she can do that as an outpatient. So from what I thought thinks were improving and maybe just maybe the tumor was just going to kill it self and everything would be okay. Later that day around 4 p.m. the head of neurology came to talk to me about Karlie's plans. This is where i crashed. For the past few days I have been in my own world. Trying to avoid anything negative and it has been working. I haven't been my self. From everything he said what Karlie has is not good at all. He said during surgery they managed to get out 50% of the tumor. But the rest of the tumor that is left is on very important parts of her brain. Basically at the bottom of her brain that controls everything. He said she will get 2 sessions of chemo and then recommends radiation. It doesn't sound to bad until he explains. They have studied radiation ayt St. Judes Hospital on infants. There are a lot of risks especially where Karlie's tumor is. It could cause mental retardation. Im going crazy because she was PERFECT before there is no way I am going to let this happen to my little angel. I have a lot of big decisions to make. But I know my little girl is so stong and God is on her side. They are doing physical therapy now to hopefully get her strong and back to her self. I get to hold her today so I can not wait.
My heart breaks every day I see her in pain. I will never give up on my prayers and that is the only thing I ask of you people who care!
Wednesday, September 05, 2007 Karlie....is home.
I haven't been able to get online the past few days but here is an update..
Karlie is home! We came home today. Not sure for how long. Tomorrow we have an appointment for setting up chemo. That will probably start in the next week. It is so hard to accept all of this. Everyday I see her in so much pain. I can't believe this is all happening to her. I try not to think about it as much as possible but wehn i do i break down. She is my world. My reason for living. Without her I have no reason to live. The chemo might not work. But I a hoping for the best. They say the kind of tumor she has is very stubborn. This is going to be a long journey but God is on her side. When chemo starts she will be in the hospital for a few days again.
Please keep praying. This is only the beginning
Wednesday, September 12, 2007 A little bit of GOOD and BAD
Current mood: hopeful
Today we went back to the doctors to finally answer the question "Does Karlie need a shunt?" So first thing she got a CT scan . She did very well. They didn't have to sedate her at all. After that we went to see her surgeon. And this is the big news we got...Her ventricles are getting bigger rather then getting smaller. Which is a bad thing. It means the fluid in her brain is not draining so there is a lot of pressure in her head and she has probably beeing fussy due to a very bad headache. This all means she NEEDS a shunt. My heart just broke. Its going to be something she will need for ever. It is a drain that basically goes from the top of her head down her neck to her belly. He also said that it most likely always needs to be replaced quit a few times. Okay now the semi good news. The surgeon also said the tumor looks to be dead!! Which is wonderful but yet is not 100 % sure.
So Karlie's surgery for the shunt is Tuesday. They are also going to put her line in for chemo at the same time so she only has to go through it once. She is getting a little better everyday. She is also getting her top teeth now!!
Everyone keep praying please.
We love you and appreciate everything!!
Friday, September 21, 2007 Update on my Princess 9/21/07
Current mood: optimistic
Yesterday Karlie finally got to come home. She was scheduled to get a shunt put in on Tuesday but on Monday she was extremely fussy and I couldn't do anything to calm her down. Everthing was okay it was just the pressure in her head bothering her. On Tuesday the operations went great! She got her shunt put in on her right side (it starts on the top of her head and goes down her neck to her belly). The shunt will drain all her spinal fluid. Her second operation was getting get broviac put in ( its a central line for chemo). And they put this in on the left side.The operation only lasted about 2 hours so that was a relief. She went into recovery and I could tell she was very uncomfortable and that was rough for me. But they gave her pain medicine as needed so she could be comfortable. The next day was AMAZING!! I could not believe the different. Even though she had just ha surgery she was gettin back to the old Karlie. Laughing and talking. She was just happy! We were supposed to come home on Wednesday but they got her an MRI scheduled for the next day so they thought it would be easier to just keep her one more night. By thursday morning she was so different from how she has been. She can lift her head!! Move her neck. Trying to stand! Its just amazing. My baby is coming back. Now we are home and she is still getting better.
Chemo starts on Tuesday
So back to the hospital for at least another 3 days.
Nov 16, 2007 2:04 PM Subject: GREAT NEWS...
Body: For all of you who have been wondering how Karlie is doing this is what is going on... Wednesday she finally got her MRI that my family has been waiting for for way too long. I just got off the phone with the doctor and this was the news... From what she could see the tumor is GONE!! She said everything looked great. That also means there may not be any need for any more surgerys! We will not know 100% until the neurosurgeon who performed her surgery looks at the MRI since he was the only one who could really tell what was tumor and what was blood. But the tumor is not growing and hasnt for over 2 months. And from what they think its gone!
Next is radiation and the is also not a 100% yet. We are just going to a few different hospitals to see what they think. They are not going to do it if they think it will hurt her. At this point they think it may give her a stroke because of the location of where the tumor was (on her brain stem-that was only part of it). So i know the doctors will not do anything they do not think is safe.
Finally some good news!!!
Nov 21, 2007 3:40 PM Subject: Horrible News...
Body: Today Karlie went for her radiation consultation. I didnt understand why she needed to get radiation if the tumor appears to be gone. I thought all this was over. I though she was better and everything was going to be fine.
I got a HUGE wakeup call today. After the Doctor explained all the side effects and risks of radiation i simply ask "Why does she need radiation?" His answer shocked me. "BECAUSE IF SHE DOESNT GET IT SHE WILL DIE" My face was blank with tears coming down. I thought she was fine.
So it looks like radiation is definitely the next step. Its not as simply as it sounds. There are tons or risks and side effects, but they are all better then loosing her. She is going to get the radiation either in Boston or Houston. We are going to see which is the best and which will help her the most. The reason we have to go away is because she needs a special beam and only a few places have it. The machine it self costs about 150 million dollars.
Karlies insurance is definetely not going to cover the whole thing. In the end we proabably have to pay a few hundred thousand dollars. The cost is unsure right now. We will also be living in that state for 2 months. I am going to work on putting a website up for karlie asking for donations.
I am not going to let money be an issue for getting my daughter better. Al I want is for her to be healthy. Today was the second worst day of my life. I feel blank and empty inside. I dont understand why this is happening to her.
Nov 22, 2007 7:06 PM Subject: Now I get it....
Body: So for all of you who know Karlie's father pretty much disappeared from her life on October 28th. Ive sent him messages asking what is going on and yet got no response but i could tell he read it. Well today I find out he has no job which means she will have NO insurance in 6 days. Can things seriously get any worse?!!!? Now i have to apply for medical assistance for her and if medical assistance doesnt cover the radiation she needs then we have a huge problem. Believe me though, I will find a way for her to get what she needs, no matter what i have to do.
KARLIE REALLY NEEDS EVERYONES HELP AND WITH MEDICAL ASSISTANCE OVER COVERING PART OF HER MEDICAL EXPENSES SHE NEEDS ALL THE DONATIONS SHE CAN GET SO SHE CAN BE CURED!!!
PLEASE EVERYONE ADD HER
WWW.MYSPACE.CO M/CUREKARLIE 
