Team Jones. A nickname that has stuck since we were newly weds, symbolizing togetherness as we navigate this life as a family. Team Jones started with Erika and Stephen, married in July 2010, expanded in August 2013 with the birth of our spunky Audrey Marie, and then grew to 4 in August 2015 with sweet Abigail Noelle. We strive to love Jesus and do the best we can with this life we’ve been given.
Our lives were fairly uneventful, comfortable even, as a family of three. We were ecstatic to learn that we were pregnant with baby #2 and felt from the very beginning that God had something special planned for this little girl. We learned at 18 weeks that our baby had significant markers for Trisomy 21, Down syndrome, including heart and kidney defects. A follow up free cell DNA blood test also came back positive. We went through a range of emotions, shock and sadness initially as we mourned the loss of a “normal” baby. That grew to acceptance and then excitement that God had entrusted us to raise one of his special angels. The heart and kidney defects resolved on their own and we rejoiced, giving God the glory for this miracle baby. We thought the surprises were over.
Then, at our 30 wk ultrasound, the dr found a mass originating in the left hemisphere of Abigail’s brain. He solemnly broke the news to us, repeatedly emphasizing a poor prognosis and gently trying prepare us to lose our daughter. We proceeded with a fetal MRI and consultation with pediatric neurosurgery which confirmed a significant brain tumor, likely a AT/RT or PNET, both aggressive and cancerous . The neurosurgeon was uncertain whether treatment options were available and stressed that even with treatment, her life expectancy would be less than a year. So began the waiting game, and the list of impossibly difficult decisions that you never want to make for your unborn child. We didn’t know if Abigail would survive childbirth, we were praying to just have a moment of life with her.
Because of swelling in Abigail’s brain, her head grew to an abnormal size and too risky to deliver vaginally. A c section was scheduled, but Abby had her own plans and labor started on a Weds evening. Abby was born Thursday August 6, 2015 at 12:37am. 8lbs, 11oz of pink screaming baby. We couldn’t believe it. The MRI after birth confirmed that the tumor is there and growing. After reviewing the images, our neurosurgeon confirmed that it’s likely a nasty cancerous monster, an ATRT or PNET, and there are pretty much no treatment options. Her advice was to take her home and love her. So we did and she continues to defy the odds. Now we wait and watch. And share her story and our hearts with you.