Kirsten's Journey

This page is a log of our family's progress through Kirsten's chemotherapy for her neuroblastoma. These notes will, hopefully, serve three purposes

1. Kirsten will be able to read about her struggle later on
2. Other parents and patients may find some information here that will help them through their journey
3. Kirsten's friends and family can stop by here to get some news (but you can call us, too!)

You can see how cheerful Kirsten can be in these pictures. Feel free to to ask questions, we will try to respond in a timely fashion.

Timeline

• She was diagnosed on January 20, 1997.
• She started the chemotherapy on January 29, 1997.
• The tumor was removed on May 16, 1997.
• Chemotherapy resumed on May 27, 1997.
• Chemotherapy ended on July 22, 1997.
• CAT scan and bone marrow shown to be clear on September 5, 1997.
• Broviac removed on September 17, 1997.
• CAT scan shown to still be clear on December 3, 1997.
• CAT scan shown to still be clear on March 12, 1998.
• Ultrasound shown to be clear on June 10, 1998.
• Ultrasound shown to be clear on September 12, 1998.
• Ultrasound shown to be clear on December 9, 1998.
• Ultrasound shown to be clear on March 13, 1999.
• Ultrasound shown to be clear on June 9, 1999.
• Ultrasound shown to be clear on December 3, 1999.
• Physical and urine test clear on December 9, 2000.
• Registered for kindergarten on March 9, 2001. No doctors involved!
• Ultrasound shown to be normal on December 14, 2001. No signs of NB.
• Physical and urine test clear on June 24, 2002. Moved to survivor clinic.

History

Kirsten was born on June 26, 1996. Kirsten's doctor felt a "thickening of the abdomen" at her 6 month check-up. The doctor said that we should take another look in a month. Within that month, Kirsten had an ear infection. This ended up getting us back to the doctor sooner than a month. Since the doctor felt that the "thickening" was still present, a sonogram was ordered. The sonogram showed an "abdominal mass". The doctor recommended that we immediately go to Children's Hospital of Philadelphia (CHOP). We did.

Kirsten went through a battery of tests that included a CT scan, Bone Scan, Skeletal Survey, VMA urine test and numerous blood tests. She smiled and giggled through most of it. She is an awesome patient. After 4 longs days of waiting, the diagnosis was a Stage IV Intermediate Risk Neuroblastoma (NB) - and it was big ( 7 x 7 x 8cm ).

A surgical biopsy was required to determine the type of NB. On Friday, the surgical team opened her up and did several tasks. First they did a biopsy of the tumor. Second, they inspected the liver for any tumor - none was found (our first bit of good news in over five days). Third, they did a bone marrow aspirate for tests to see if there was any NB in the marrow. Lastly, they inserted a Broviac tube in her chest for the chemotherapy. The biopsy was sent to the lab. Kirsten was sent back to her room to recoup. She bounced back great from the surgery. We waited another grueling five days to get the results of the biopsy back. The results showed that the NB had a "favorable biology". This means that the N-myc was NOT amplified and the DNA Index was greater than 1. The bone marrow tested positive for NB - the cancer was in the bone marrow. From that information, we have embarked on a new chemotherapy treatment at CHOP

Journal Entries

Reference

• Neuroblastoma Children's Cancer Society
• Association of Cancer Online Resources
• InterNet Resources for Childhood Cancer
• OncoLink, The University of Pennsylvania Cancer Center Resource
• Division of Oncology at The Children's Hospital of Philadelphia
• New England Journal of Medicine On-line - Home Page
• PEDINFO Home Page

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