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Five Years Ago We Stormed Bagdad and Amelia Began Her Fight With Neuroblastoma 
Amelia Hantske was born in Annapolis, Maryland in May of 2002, a perfectly healthy, beautiful baby girl. When she was ten months old we found a bump on the top of her head. Little did we know that it was only the tip of the iceberg.
Upon examination, Amelia’s pediatrician found that she was severely anemic and that her abdomen was enlarged. We were sent immediately to Johns Hopkins Pediatric Emergency where a team of doctors examined Amelia and ran a barrage of tests ultimately finding three tumors. They found one on her head, one consuming her right ovary, and the primary tumor in her abdomen by her left kidney. After surgery to remove the first two tumors and a biopsy of the primary tumor Amelia was diagnosed with stage IV, n-myc amplified, high risk, neuroblastoma, an often-deadly children’s cancer of the sympathetic nervous system.
Amelia followed the Sloan-Kettering N7 protocol at Johns Hopkins Children's Center in Baltimore. She was hospitalized three out of every four weeks for six months. She had six rounds of high-dose chemotherapy, a complete resection of the primary tumor and a stem-cell transplant September 2003. Then she traveled to Memorial Sloan-Kettering Cancer Center in New York City for twelve rounds of radiation therapy and ten months of 3F8 antibody immunotherapy.
Amelia is five now and has been free of disease since August 2003. The late-effects of her cancer treatment are mild compared to most. She has high frequency hearing loss, weak malformed teeth, and a growth hormone deficiency. She attempted growth hormone therapy but could not tolerate the extreme side effects. We are no longer scanning her for disease.
Amelia has a sister, Kathryn, who is nine and a brother, Benjamin, who is seven. They have survived this cancer too as siblings do. Amelia's favorite things to do are housekeeping and arts and crafts. Amelia is an excellent swimmer, as anyone in our community will tell you. She enjoys jumping off of the diving board and even has a pretty nice backstroke.
It has been four years since her diagnosis and we are eternally grateful for her health and the many doctors and nurses who have worked so hard to provide her the best treatment and care. We continue to live with the knowledge that this beast, neuroblastoma, could still be lurking in our lives, so we quietly live each day to the fullest. Children’s cancer affects whole families. It shows no mercy. We need to find a cure.
Please help us in our fight to conquer neuroblastoma. Please visit some of the sites below and find out how you can help save a child's life.
Journal
Tuesday, March 18, 2008 1:26 PM CDT It was the morning of March 18th 2003 while I was cleaning up the kitchen after breakfast that I found the bump on Amelia’s head while she sat happily in the highchair. It was what I would call a marshmallow bump. The kind that grows quickly in an instant. Benjamin who was only three and a half had been running around the house that morning with wooden building blocks. He must have hit her with one while I wasn’t looking. Why didn’t she cry? How did I miss it? I had seen a few marshmallows in my time and decided to give it a day to go away.
Amelia was ten months old and had always been a hearty eater but had recently begun eating less. Sometimes she would fuss and then burp and then begin eating again. She was a happy baby. I had also noticed how her skin would occasionally look yellow or almost orange. I had heard about babies who would turn orange from all the carrots that they ate. She wasn’t always yellowish just occasionally and I would blame the lighting or her diet. She was a little more fussy lately but nothing to worry about. Right?
Kathryn(5) was in first grade. Benjamin(3) was in pre-school a couple of days a week. It was now Wednesday and the bump was about the same as it was the day before. Should I worry? She was acting okay. I guess I was really blaming myself for letting the injury happen. I tried not to think about it any more. Ben kept me busy. The day came and went.
The next morning I came into Amelia’s room to get her from her crib and she vomited. Just out of the blue. It didn’t make any sense. She wasn’t acting sick at all. Maybe this was being caused by the head injury? The bump was still there. What is going on? What is happening to my baby? It was time to see the doctor.
I called my mom to come take care of Ben so I could take Amelia to the walk-in hours at the pediatrician’s office. Robert would make sure Kathryn got to school. It was a cold and rainy morning. We were seen rather quickly by Dr. Rice. He thought that her spleen felt enlarged and that she might have a blood disorder. He mentioned hemolytic anemia as a guess and did a stat cbc. He could not explain the bump. Amelia was looking fine. She hadn’t thrown up since we left the house. When the doctor came back in he looked rather serious. He said that Amelia’s cbc had come back showing that she was severely anemic. He asked me to drive up to Johns Hopkins Children’s Hospital in Baltimore right away. He said that although the hospital would have liked her transported by ambulance he knew I would rather take her there myself. I asked him if I could go home first and he said no. I should drive to Baltimore right now and go immediately to the Pediatric Emergency Department. He said that he would call them and let them know to expect us shortly. I left the building with my happy little baby and did what the doctor had asked me to.
It had begun to rain harder now and my heart rate was climbing. What was I doing? Where did he say to go? Would I get lost trying to find the hospital? I acted so cool and confident with the doctor that I fooled myself. The world started moving in slow motion. I called Joanne. I think I called Robert too. Maybe Mom. When I found the hospital I had to find a place to park. I climbed up the parking garage all the way to the top. It was pouring rain and I had to get my baby to Pediatric Emergency. My heart was pounding next to Amelia’s. She was tucked neatly into my sling. I got wet. I followed the signs to Pediatric Emergency.
Read Journal History
Hospital Information: Johns Hopkins Children's Center
Memorial Sloan-Kettering Cancer Center
Links: http://www.lunchforlife.org Lunch For Life is an organization that raises money for Neuroblastoma research. We are fully aware that relapse can happen at any time and frequently does for children with Neuroblastoma. Therefore, we need to help find a cure. You can help too, one Lunch at a time.
https://www.lunchforlife.org/giving_tree.aspx?cid=189 Check out Amelia's Giving Tree.
http://bandofparents.org This is a group of parents whose children have been diagnosed with NB who have banded together to support exciting new research by the MSKCC team! Check out the BOP Shop and Cookie Sale.
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