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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


      The tumor may have grown since June of last year....if so it was just slightly. The cysts in her brainstem double in size since last june. We think they may be what is causing her limp to be more pronounced but it could also be the fact that she hasnt had therapy in a few months. She is not having issues swallowing or breathing headaches nothing like that, so for that we are grateful. The doctor is going to take it to the board and the nuero surgeon and see what they think we should do and see if there is any possibble way for us to surgically drain the two cycts that are causing the pressure in her brainstem. So we are up in the air right now in a waiting game. 

       I had the most heartbreaking conversation with my little girl last night. She came down stairs at 12:30 at night, i could tell she had been crying. She said I know I should be sleeping but I cant stop thinking mom. I told her to come cuddle with me and she proceeded to tell me of the sad horrible thoughts she was having and all the questions that went along with them. She was afraid that when she dies she will have to die in the hospital. She was afraid all her friends wouldnt be able to visit and that we, mom dad and brother wouldnt be able to spend the nights with her. So i told her that first and foremost we are nowhere near death, we have options still. But i also told her that if  they were to say there is nothing more they can do and we have checked with other doctors and they say there is nothing left to do (i also told her that wasnt going to happen) that we would bring her home and i explained what hospice is and what they do. A thirteen year old should not have to lie in bed at night worrying about this sort of thing. Thats why it pisses me off so much when she tells me that certain friends of hers think shes spoiled, that she gets everything she wants. She doesnt get everything she wants....not that i dont try. money does not permit me doing everything shed like to do. But one thing this tumor has taught me is that you cannot take for granted one day of your life. She may not get all the physical things she wants but she gets all our love. I make sure everyday she knows how much i love her, how much i enjoy talking with her, spending time with her. she is my best friend and i will keep fighting for her as long as i can. I am so very lucky to be her mom.So for thoses kids that think she has it all.....be lucky you dont lie in bed at night wondering what it will be like to die. If she had it all we would have a cure for cancer.  I hate cancer....and cycts! And i cant help but think how pissed i would be if these cycts continued and they counldnt figure out how to stop them. Because since the are in the middle of her brainstem too they are just as dangerous as the tumor itself. they are still masses pushing on important nerves that control swallowing, breathing, balance. And they have no set treatments for them. So once again i am going to just trust in God and know that he loves us. He will take care of us, Hes got this. Ok sorry for the all over the place thoughts. :) 

Have i not commanded you Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you where ever you go. 
Joshua 1:9
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Comments

3 Comments

Cindy Candela-Ryan
By Cindy Candela-Ryan
Etta, I'm keeping you all in my prayer for the Lord's Peace, Presence and Wisdom for her medical team right now. Give Amy a big hug from me! Love the new photo, Amy's love and strength are shining through! Smiles, Cindy :)
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Sandy Daron
By Sandy Daron — last edited
I am soo sorry!! That is tough news!! They cysts are soo terrible. I pray the doctors will be able to find a way to treat them.

Amy is getting soo beautiful!! I pray the Lord will give her peace.

Live under the protection of God Most High and stay in the shadow of God All-Powerful. Psalms 91:1 CEVDCUS06

Love ya,
C.O.L.E.s Foundation
(Caring Openly, Loving Eternally)
www.colesfoundation.org
www.kidsunitetofight.com
www.colespages.org
Email: sandy@colesfoundation.com
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Shannon Hadac
By Shannon Hadac
Stupid, mean kids. We have faced similar situations. My daughters would trade in all their belongings to have their sister back. It's sad that those kids can't understand. Even parents too. You have our love, strength and peace being sent to you.
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