CASSANDRA MARIE STEINLE

Welcome to Cassandra's Web Page. It has been created to keep people updated about our child.

On April 19, 1999, our lives were forever changed. Our then fifteen month old daughter was diagnosed with Neuroblastoma IV, which is a rare childhood cancer.

Here is our story. Cassandra, who was very regular was constipated for two days. El, being the nervous mom insisted on a trip to the pediatrician. As it turned out, there was a mass the size of a grapefruit in her abdomen. The cancer had also spread to her bone marrow. By the end of the week, a biopsy of the tumor had been done and a catheter for administering chemotherapy had been placed in her chest. What followed for the months of May through August was intensive chemotherapy and many hospital stays. In September, surgery was performed to remove the tumor. In October and November (each two and one half week hospital stays) Cassandra receved high-dose chemo and subsequent stem cell rescue (similar to a bone marrow transplant but with her own cells). We came home from our last hospital stay two days before Thanksgiving 1999. Treatment for the month of December was radiation. After that she was on Accutane from February through July 2000. The accutane is supposed to clear any residual cancer cells. In July 2000, her treatment officially ended.

In late 2000, the after effects of Cassandra's treatment began to surface. In November 2000 we learned that one of the chemotherapy drugs, that was platinum based, had damaged her hearing to the point of needing hearing aids. In January 2003, her hearing once again decreased and her hearing aids were adjusted. Also, between the antibiotics she received and our inablity to take away her bottle, which was a huge source of comfort to her, she needed a lot of dental work.In April 2001, she had the dental work done and did not have her top two front teeth until her adult teeth grew in during late 2006. We have now been advised that she will need braces in the next few years.


Cassandra has dealt very well with these issues. She is currently attending and enjoying fifth grade at the Smithtown Elementary School. She will start the Accompset Middle School in September 2009.


Cassandra's current status is NED. That means that there is no evident disease. She has now been NED for over NINE years. She is seen by her oncologist and has diagnostic blood work drawn once a year and will only have scans if symptoms warrant them. This cancer is very aggressive and often returns. As more than seven years have now passed, we are optimistic that she has beat the odds.

Please keep Cassandra in your prayers for continued good health. We believe in the power of prayer; it is awesome!!!!!!!!!!!

Journal

Tuesday, June 16, 2009 3:02 PM CDT

There has not been an update in a while. No news is most definitely good news in this case. Cassandra continues to do well. We are approaching TEN years out of treatment this November.....WOW. God is amazing and his healing powers are awesome.

Cassandra's status continues to be NED. She does great in school and despite a hearing loss is becoming quite the flute player.

To everyone visiting this site, I sincerely pray that you will find peace and hope.

Blessings,

Read Journal History

Hospital Information:

Patient Room: None, we hope ever again !!!!!!!!!!!!

Stony Brook University Hospital

Stony Brook, NY

Links:

E-mail Author: EllieS21@verizon.net

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.