Jenna's time with us has passed and now she will dance in Heaven until we meet her again. Show me your ways....teach me your paths.....guide me in your truth. Psalm 24
Jenna's story begins in March of 2008. She began experiencing slight fevers and complaining of stomach pains. There were no other symptoms present. After several trips to the pediatricians office, there were no additional clues as to what might be causing these symptoms and a journal was created to find any pattern. As days went by, Jenna continued playing as normal, interacting normally at the library, playgroups, etc. Sometimes there was a fever or a complaint of stomach pain, sometimes not. Sometimes her eating fell short, sometimes not. After her well visit at age 3, the pediatrician felt blood work or a stool study might show or eliminate a problem. Everything proved normal. Another week passed and on Monday, April 14th, Jenna awoke with stomach pain and the following day had difficulty bending over. After consulting with my pediatrician on Wednesday, April 16th, an ultrasound was scheduled for Thursday. One week later, we're facing stage 4 neuroblastoma.
During the year of 2008, Jenna has undergone 8 cycles of chemotherapy, five of which were done in Albuquerque, New Mexico and three in New York City. She has had the abdominal tumor removed in entirety through two surgeries performed by Dr. LaQuaglia at Memorial Sloan Kettering in New York City. As the new year passes, she is still testing positive for bone marrow disease and those cells are a mature form called Ganglioneuroblastoma. Although slow growing, fairly unresponsive to chemotherapy, therefore new innovative treatments must be tried to achieve cure. Slow growing also gives us time and she will be part of new studies being introduced. We have been told she fits into a category of children that continue to live active lives with bone marrow disease in their system.
Update December 2009
Jenna's disease hasn't changed for many months. She endured so many different treatments this year including more chemotherapy, high-dose antibody therapy, radiated MIBG therapy not to mention numerous scans, transfusions, hospital stays.....
Regardless, many treatment options were explored and brought to the table in July of this year. The bottom line was she had incredible bone marrow disease and has since diagnosis and there were still neuroblastoma cells visible on scan around the pancreas. This eludes to progression in her disease, but we were told at Sloan Kettering in NYC that it is sometimes seen in children in her category. Yes, she has narrowed herself down to a very small percentile of neuroblastoma patients that have these cells in their bone marrow that nothing seems to change.
Will her disease progress? Probably. When? No one can tell us that. So instead of pursuing further aggressive treatment, Michael and I decided that we'd celebrate this summer and now Holiday season at home. Now, we didn't give up the fight by any means!!! She's seeing a Naturopathic and Homeopathic doctor, involved in Foot Zonology and Yoga. Her diet is very strict excluding all refined sugars and slowly refined flour. We've also started moving towards a raw diet including high-potent, low acidic smoothies.
I guess, on the home front, we wanted to give her the best fighting chance she has and we're educating ourselves everyday and making new decisions all the time. She is incredibly spirited, running and loving life like any four year-old should. That is what we want, regardless of her path. We know in our hearts she is a gift and we treasure every day! God Bless!