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My Story

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!


Katie Miller posted a new journal entry.

Two years.  In celebrating this day, we filled ourselves with God's glory.  Mass for Jenna's remembrance, a visit with Great-Grandma, a beautiful bicycle ride beside ... Read more

Lynn Worley signed Jenna's Guestbook.

Christ suffered in our place that we might have the hope of Heaven! Always praying!Isaiah 53:11-12 He shall see of the travail of his soul, and shall be satisfied: by his ... Read more

Lynn Worley signed Jenna's Guestbook.

Praying!Isaiah 49:13-16a Sing, O heavens; and be joyful, O earth; and break forth into singing, O mountains: for the LORD hath comforted his people, and will have mercy ... Read more

Lynn Worley signed Jenna's Guestbook.

Lifting up prayer!Psalms 63:1-2 O God, thou art my God; early will I seek thee: my soul thirsteth for thee, my flesh longeth for thee in a dry and thirsty land, where no ... Read more

Kathy VandenBos signed Jenna's Guestbook.

Remembering your precious Jenna with you today on another anniversary of her homegoing.  Jenna Ann Miller is not forgotten.May God continue to be with you.Love, Read more

Lynn Worley signed Jenna's Guestbook.

Praying right now!Psalms 4:1, 7-8 Hear me when I call, O God of my righteousness: thou hast enlarged me when I was in distress; have mercy upon me, and hear my prayer. ... Read more

Lynn Worley signed Jenna's Guestbook.

Praying right now!1 Peter 1:3-5 Blessed be the God and Father of our Lord Jesus Christ, which according to his abundant mercy hath begotten us again unto a lively hope by ... Read more

Lynn Worley signed Jenna's Guestbook.

These words are so amazing and comforting!! Praying!Psalms 62:5-8 My soul, wait thou only upon God; for my expectation is from him. He only is my rock and my salvation: he ... Read more

Lynn Worley signed Jenna's Guestbook.

The greatest comfort we can receive is knowing that the Lord is our refuge! Praying!Psalms 46:7, 10-11 The LORD of hosts is with us; the God of Jacob is our refuge. ... Read more

Lynn Worley signed Jenna's Guestbook.

The Lord will always use whatever you're going through for your good! Know that I'm praying!Psalms 91:9-12 Because thou hast made the LORD, which is my refuge, even the ... Read more

Lynn Worley signed Jenna's Guestbook.

Praying!Philippians 3:9-11 And be found in him, not having mine own righteousness, which is of the law, but that which is through the faith of Christ, the righteousness ... Read more

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