Ari's Story

We've entitled this blog "The Lion Fights" for a couple reasons.  The first is simply that Ari is a Hebrew-derived name that means lion.  It took us 48 hours after he was born to decide on the name, but we felt confident he was Ari, our son.  The second reason for the title is that Ari is fighting a very aggressive, malignant brain tumor, AT/RT (atypical teratoid rhabdoid tumor).  This blog aims to connect people to Ari's story and our journey through cancer treatment.

Pre-tumor, Ari enjoyed listening to music, babbling, going on walks, books, clapping, being outside, snuggling, his blankie, pic-a-boo, being with groups of people, and bathtime.  Unfortunately, a lot of this was lost after his first brain surgery on February 27, 2014.  He suffered from a post-operative condition called Posterior Fossa Syndrome, a condition not well understood or documented.  We were told to just give it time.  Over the next several months he would undergo 5 surgeries, multiple feeding tube placements, and 18 weeks of chemotherapy.  The amazing thing about all of this was that he was still making progress toward re-learning developmental skills, using his voice, and simply becoming Ari again.  On August 5th, Ari had an MRI to assess the effectiveness of the chemotherapy.  Unfortunately, 3 new "nodules" were discovered in the original tumor bed that we would later learn was new tumor growth.  Another brain surgery awaited our son to remove the nodules.  It was a success!  We are now beginning radiation therapy to the tumor bed and will continue chemotherapy after radiation ends.  Today, Ari enjoys listening to music, babbling, going on walks, books, being outside, his blankie, pic-a-boo, being with groups of people, and making animal sounds.  We continue to work on the snuggling, clapping, and bathtime activities.  Ari continues to fight, and we continue to be thankful for the amazing support we have received, and continue to receive, from our family and friends.  Above all, we are grateful for a God that hears our cries and has not left us throughout this journey.

We welcome all of you to journey with us through this season.  We also pray that you, along with our family, are changed by Ari's story.