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Amy’s Story

Welcome to our CaringBridge website. . Please read My Story Amy was born 12-18-2001 and was diagnosed with an inoperable brain tumor (brain stem astrocytoma) 9-21-2004. Amy is a sweet, talkative little girl. She loves to sing and be the center of attention. Her favorite colors are pink and red. She loves horses, barbies, jewelery and makeup. Anything "girly". She has a big heart

   My father in law from out of state saw Amy walking one day and asked me why she was limping. I told him that that was just how she walked. A couple months later my mother in law asked me why she was limping, So I took a good look at her and realized it did look like a limp and not just a baby walk.
   We took Amy to a bone specialist and he said we needed to go to a neurologist. So we set up an appointment. 
   One day, I was tickling Amy's right foot and realized the toes on that foot barely moved. I asked her to wiggle her toes and I could tell she was trying but they were not moving. I knew something was terribly wrong. 
   We went to see the Neurologist and he believed Amy had a mild form of Cerebral Palsy so he ordered an MRI.
   We got the call that Amy had a Brain tumor on September 21, 2004, when she was just two and a half years old and at the time our only child.
   The very next day we went to Children's Hospital of Philadelphia to see a Neurosurgeon who told us it was inoperable. Then the oncologist looked at her scan and said chemo would do nothing for her and radiation would only prolong her life. He told us she was going to die within the next 6 months to 3 years. He ordered another MRI for the following week to get a better picture. Needless to say it was the longest week of my life.
   After the MRI he told us it may still be this horrible tumor that he explained to us the week before, the noncurable one OR it might be a kind that will respond to radiation, the only way to tell was to go through with the treatment and wait for a result.
   So October 25 she started her treatments. She was to have six weeks of radiation. We stayed at the Ronald McDonald House in Philly. What a wonderful place, a blessing. We made lots of friends some we still talk to. It was a comfort to have other parents there that understood what we were going through.
   She had to have a surgery to put a port in her chest. The port was put in so they could put an IV in from Monday to Friday (We had weekends off) for the medicine to put her to sleep and not have to stick her everyday. 
   Every day we woke up at 5 am to take Amy to her treatments.
The treatments only took an hour and a half each day, then we would have to wait for her to wake up. But then the rest of the day was ours.
   During the 4th week Amy caught a cold which prevented her from getting her treatments for a week, each day we still got up and went to the hospital just to find out she wasn't breathing well enough for the treatment. So in all we ended up being there for seven weeks.
   Her last Radiation treatment was on my birthday December 10th 2004. I was hopeful that that was a good sign.  The nurses that took care of her every day threw her a little End of Radiation party. She had them all wrapped.
   6 weeks later in January we had a follow up MRI and appointment with the radiologist. He told us the tumor had shrunk 80%. We were so happy. We knew we were not out of the woods but it was nice to have good news for a change.
(ironically I found out shortly after that that I was pregnant with my second child....more good news)  
   When we got back home I took off Amy's shoe and sock and asked her to wiggle her toes and she could. I was never so happy to see toes wiggle. Now she thinks I'm a freak that likes to watch toes wiggle because I make her do it all the time. And she always says "you like it when I wiggle my toes don't you mom?" with a big smile. 
   We went to follow up appointments every three months for the next year and all the MRI's came back with the tumor shrinking just a little more each time.  
   Then we moved to every six months in the second year and then to once a year in the third year. And the MRI's started coming back stable. But as long as the tumor never grows she can live a long healthy life. So stable is fine.
   We are now on our 5th year out. She has a very slight limp that comes out a little more when she is tired or sick but most people don't even notice it, that is the only way of knowing she even has a tumor.  But there is always that fear that it will grow. 
Amy is a gift from God as are all children. God has truly blessed us. And I feel everything is going to be OK.
  

Latest Journal Update

MRI RESULTS

Amy's tumor stayed stable. (didn't grow) the two Cysts  grew a mm or two. Doc thinks we will continue to watch and wait but he is taking her case to the board to see if they have any ideas how to treat the cysts. They only know of treatments to shrink tumors not cysts so although these cysts are not causing a problem yet eventually they will if they get to big. And because they are intertwined with the nerves of her brainstem they might not be able to remove them surgically and a shunt wont work either. He said we may end up giving her more chemo sort of on a trial and error basis cuz they have no idea what will stop these cysts from growing. So overall the tumor not growing is great but there are still things to be concerned about. Right now though Amy feels great and has no new deficits from the cysts pressing against anything in her brainstem. So we are looking at this as a good thing. Thank you all for praying for us. I really do appreciate it. I know I am not strong enough on my own to get through this, I need Gods strength and guidance.
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Comments

4 Comments

ahmed fares
By uno — last edited
You are not a strong Oky - there is stronger than any human being that - he is the Creator = God = strong powers .We all need to pray to him - and increase our prayers for a speedy recovery of these Beauties ------------
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child of God
By child of God
I'm so glad they are stable. Continuing to pray for you Amy and for NED!
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Sheila Harris
By
Will keep Amy in my prayers & trust that the dear lord is going to keep her safe.
Thanks for keeping me posted.
Hugs
Angel Sheila
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Sandy Daron
By Sandy Daron
Praise be to God!! Amy is getting soo big and pretty!! I pray for wisdom in treating the cysts.

Have a great weekend!!

Luv ya,
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