❤Her STORY. Our FIGHT❤

My daughter is 17 yrs old and she was born with Neurofibromatosis type 1. This is a disease that has many symptoms. Behavior issues, mental health issues, developmental delays (she is 17 with the mentality of a 12 yr old), ADHD, eye issues....and worst of all tumors that can be both malignant and benign. Lexi has dealt with each and every one of these issues. At 2 yrs old she was diagnosed with tumors on her optic nerve that may someday lead to blindness.  She had her 1st brain surgery at 10 yrs old. Diagnosed with a large tumor in the center of her brain. There were many complications...one surgery ended up becoming 3 surgeries. We almost lost her. We stayed in the PICU for almost 3 months. There was also permanent damage in her brain from both the operations and due to her brain swelling. She became cross eyed, started having seizures, right sided weakness, double vision and a permanent facial droop. She also had a shunt placed in her brain because the tumor and brain swelling caused her to be shunt dependent for the rest of her life. Without it the fluid in her brain will not flow normally and then that causes brain swelling. This was the scariest time in our lives and this is when I realized how deadly NF can be. Please read the newspaper article that was written about this time in our lives. The link is below

http://www.herald-journal.com/archives/2010/stories/Lexi-Love.html

Over the past 7 years Lexi has had a brain MRI every month to watch for tumors. She has had 3 eye surgeries trying to correct the damages caused by the tumor..and she has new tumors poping up all the time on her body. 2yrs ago an MRI showed another brain tumor. It was small and didn't seem to be a threat. Her Dr's have been keeping an eye on it to make sure that it wasnt getting any bigger.. They said they weren't too worried about it...They were wrong.
This new tumor is growing rapidly and her brain Drs are now concerned. After much testing it has been decided that Lexi has to go through this horror again. The brain tumor is scheduled to be removed on April 20th. We are terrified to go through this again. What will happen this time around? Will she make it? Will there be more damage after this sugery? Will it change her yet again? As we were still letting it sink in and preparing ourselves to go through this again Lexi started acting strangely. 2 weeks ago she started sleeping much more, she become much more temperamental and moody. She was having headaches that became constant. So i asked the Drs if this could be caused by the tumor and they said more than likely yes. But on Thursday March 30th she was extremely sick...she wouldn't stay awake. She slept for 3 days barely eating and if i tried to wake her she would be confused and even delusional. I was very concerned. I called her Drs and had another MRI set up for the next day to make sure her brain wasnt swelling. Well we didn't make it.. Friday morning was her worst. Her step- dad and I had to get her dressed and had to carry her downstairs. We called 911 and got her to the ER. She was screaming and delusional and had severe pain. Her brain was swelling and her shunt was malfunctioning. So she had an emergency operation to fix the shunt and stop the swelling. The Drs said after the surgery she will be back to herself. They were wrong..
Friday at 5pm she came back to PICU from recovery after the 2hr surgery. As I looked at my baby girl with her hair shaved and bandages on her head I prayed. I thanked God yet again that she was alive. When Lexi woke up she was confused and didnt remember the past 4 days. I told her everything that happened and she cried. But as the night went on she was still confused she kept asking where we were, she was slurring every word, she screamed and yelled all night. She threw things at me and at the nurses. She kept saying her head hurt. Nothing made her better. Morphine and Valium couldn't calm her. I broke down. Something is still very wrong. I begged and pleaded with the Drs, I had to make them understand that this is not my daughter. So on Saturday morning a CT scan showed that her brain was still swelling. There was 2X more fluid. The operation the day before didnt work. The shunt still wasnt working. The Dr's were confused because they just replaced the part of her shunt they thought was not working. So it was decided that Lexi was going to go back on the operating table that same day. 24 hours hadn't even passed yet since she was in the operating room. The doctors decided that they had to open her head back up again to see what the problem was. They were going into the surgery not knowing what was going to happen.
So yet again I watch them roll my baby to the operating room. As I held her hand my heart was heavier than it has ever been, as I let go of her tight grip and she cried for me to stay with her I tried desperately to hold in my tears. I waited for another 2 hour surgery and felt nothing but relief when the surgeon came in with a smile on his face. The part of her shunt that went into her skull was clogged so the brain fluid could not flow. He replaced that part. Now the fluid should flow as it should.(finger's crossed)
As they brought her back to the room I looked down at my little girl. A new patch of hair shaved away and more bandages on her head. I cried and prayed again that she is alive. We stayed for a week. She is not the same girl that was brought in that ambulance a week ago however. Her hair is completely gone and her head is full of staples. And what scares me to death is that everytime she goes in for a brain surgery she never wakes up the same. Now everyday she has at least 1 episode. She will start to slur her words, her body starts flinching and her facial expressions are something I have never seen her make before...almost like twisted. She looses balance and cant control what she is doing. She also doesnt remember after it has happened. The doctors said it could be a few things. Her brain went through severe trauma with the surgeries and swelling. It could be that this is just part of her recovery or it could be that there is brain damage from the trauma. We have to wait and see. And pray. Lexi thankfully is home for now until the 20th when she goes back to have the brain tumor removed. We will be checking back in to what I call our 2nd home for the past 17 years and the story of heartache and hope continues for my fragile baby girl.
I set this page up to hopefully find financial help. I am employed as my daughter's personal care assistant or PCA. I am unable to work a regular job because of my daughter's disease. I have lost many jobs because I have to put her first and I have to be available for anything 24 hours a day. So luckily enough I am able to receive an income through her medical insurance. The only downfall is when she is in the hospital I cannot claim any hours. So my income stopped the second we walked in the hospital doors. And then she will be back in the hospital on the 20th for the tumor resection. If all goes well the very least amount of time she will be in the hospital is 10 days. But that is really difficult to estimate due to the fact that the 1st surgery she had 7 years ago kept her in the PICU for almost 3 months and I never left her side. This month with her hospital stays I will be losing about two paychecks. The rent is unpaid as well as bills on top of all of this stress that I have with my daughter's illness I have to worry about if she will even have a home to come home to when she is released from the hospital. Everything that has happened this month and is going to happen was not planned and I was not prepared for this. There is only one income in my house and that is from me, due to the fact that Lexi's step- dad was in a car accident four years ago while he was working , and that left him permanently disabled for the rest of his life. He is unable to work and we have been waiting for his disability to kick in and that is going on three years now. Desperate financial help is needed. I will put it this way , think about everything that you spend your money on every month from your house payment to food and daycare expenses. Well I need help with all of that. There is no income coming in and my three-year-old has to go to daycare because he is not allowed to be in the hospital when he is under 5 years old. That is unpaid as well as all of my utility bills. If by posting this story I am able to get some kind of financial assistance, well I could not express my gratitude enough. There is so much on my plate right now with my daughter dealing with this disease. Adding a financial burden on top of it is just too much stress for a single person to bear. So here I am with my pride swallowed and my head hanging down. Please, however if you are not able to financially help I dont want you to feel bad. You can still help tremendously by keeping Lexi in your prayers.
My daughter is the strongest person I know. Through all of her pain and all of her sadness she keeps a smile on her face. She loves her family so much. Lexi has 2 brothers Orbin is 19 and PJ is 3. She also is going to be an aunt any day now and I a grandma.She will go out of her way to make you laugh. She loves people. Lexi is very active in church and youth group night at church is her favorite place to go. Before this all happened recently Lexi signed up for Taekwondo and she is loving it we are hoping that she will be able to continue after her recovery. She loves arts and crafts and music. But most importantly she's in love with Justin Bieber and she will be quick to tell you that she will be marrying him someday. Please believe me when I say that Lexi is one of a kind and you would never meet anyone like her. She is not your typical 17 year old teenager. She will need an MRI every month for the rest of her life, she has never had her first kiss and I don't know if she ever will , she will never be able to drive, she needs help with her everyday life from personal care and hygiene to mental health and behavior issues. She will need care for the rest of her life.She literally will never act her age, because of her developmental delays. At one point her behavior issues have gotten so bad that I was told to put her into a home because the stress on me was too much, but I could never give up on my daughter,I could never leave her. I will care for her and she will be with me for the rest of my life. Lexi will be on medication forever and when she looks in the mirror she is not happy with what she sees. Her body is covered in tumors from head to toe including a large tumor that she was born with that takes up her whole torso you can see this in the video above. Its hard to find clothes that fit her. Also she will never completely comfortable when she lays down because it hurts her tumors. She is not your typical 17 yr old. But I am thankful for every second I have with her. She is a fighter. She is my inspiration. She is my reason.