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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

The day I became a cancer Mom

September is Childhood Cancer Awareness Month

Sept 21 2004 
This has to be a dream…I just got a call from my husband. What do they mean mass? Our beautiful little girl with bologna curls looks healthy has ever. She only has a tiny limp. She’s so smart how can she have a brain tumor? She looks so healthy. 
I go to my parent’s house and tell them the results of their first grandchild’s MRI. She has a mass on her brainstem. My head spins while calling the hospital to make an appointment the very next day. Oh no this is bad they never put you in the very next day unless it’s really bad. Am I going to lose my baby? I can’t live without her. I realize I have just told my parents horrible news and it’s their wedding anniversary. I am hiding in the bathroom crying because I don’t want my little girl to see me…..I don’t know how to answer the questions she’ll ask. 
Sitting on the porch steps while she plays in the sand box. I’m scared out of my mind. Praying to God, Please Lord I’ll do anything please let me keep my little girl. A song pops into my head. Just remember I love you ….and it will be alright. I am hoping this is God talking to me and not just my wishful thinking. “Wanna play with me mom?” I smile through my tears “of course sweetie”

Sept 22 2004 
This has to be a nightmare…..someone please wake me. My little girl has a brain tumor. Here I am sitting in the oncologist’s office waiting to see if he can help me. The neurosurgeon already said he couldn’t do anything. How can this be happening she’s not even three yet? It seems like we have been sitting here for hours. Finally the doctor calls us in. My head is spinning. The doctor is saying all sorts of big words. Astrocytoma, radiation will only prolong her life. What? What is he saying? Prolong? Is he saying she is dying? I’m trying to hold back the tears. I look over and see my little girl in the corner playing with her dolls like nothing is happening. I ask the doctor how long? He looks distressed and says anywhere from 6 months to 3 years. My legs feel shaky. My chest feels so tight. My baby…my only child and we don’t get to keep her? I feel like someone is sitting on my chest. Tears are pouring down my face now. The doctor is still talking saying something about getting another MRI, a better one next week. I hear a small voice “Why are you crying mommy?” “Its ok baby, mommy’s just sad.”

Dec 6 2012
We are all sitting in the Oncologist’s office joking around with each other. We are here to get the results of her routine 8 year MRI. She has been cancer free for 8 years now. We all know what the doc will say. Stable. Doctor does his examine and asks lots of questions. He seems a little annoyed at our lack of knowledge of how often the headaches happen maybe he’s having a bad day. Then he says “I don’t know what to say ….Its back.” Reality takes a moment to set in and then I realize what he just said. I look over at my little girl who is almost eleven now. She fully understands what he is saying. The fear on her face is something I will never ever forget. It probably matched the fear in my face. I am having trouble holding back the tears. He tells us he will be taking it to the board and finding out what to do next. He’ll call us in a few days. That feeling of fear is gripping me. All I want to do is hold my baby and tell her it’s gonna be ok. But I don’t know if it IS going to be ok. “What are we gonna do mom?” “Were gonna fight baby!”

These three days, along with some others will forever be burned into my brain. I will go to my death bed remembering how i felt on these particular days, the saddness, the fear. The day I became a cancer mom. The day before I had never thought of pediatric cancer, I didnt know how grossly underfunded it was. I will never be able to clear my mind of these strong feelings and I don't want to. Because they help me to continue to spread awareness. We need to spread awareness. We need funding. We need more research, more treatments. We NEED a cure!

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1 Comment

holly grant
By holly grant
i joined Amy's story after her relapse. Your whole family has come so far and she is such a strong, brave, beautiful girl. I pray for God's protection on her life always.
Amy Is In His Grip!!

Holly Grant
C.O.L.E.’s Prayer Team
1 person hearted this