Chloe's dad is active duty military and was in Flight School at this time. On this day, he was actually in the middle of a flight exam so it was hours before he even knew what was going on. Almost two weeks later, we finally got to see a Neuro-Pediatric oncologist. The good news was that Chloe's tumor is a slow growing tumor and they decided it was best to "watch and wait" to see if it was actively growing. As parents, this plan horrified us at the beginning and we couldn't believe we weren't doing "something." Chloe was the exception and we made it to a year with scans every 2- 3 months with no growth. We were all thrilled and we agreed on 4 months for the next scan. Her dad finished flight school and we moved during this time!
In July of 2018, everything changed. Her tumor had started to grow but everyone wanted to give it another 8 weeks. At the 8 week scan, her tumor growth was significant, she had increased eye nerve damage and she was having decreased eyesight. Chloe's port was placed and we started chemotherapy within weeks. We ended up having to reduce her dose because she was in and out of the ER with high fevers and low counts almost every other week. She was a fighter and we were a handfull of doses away from the year marker when her Dad deployed in 2019. Two weeks after he deployed, we got the news that we feared- her tumor had grown significantly and she was being pulled from her chemotherapy and she would be starting all over again with a new treatment.
We were given a few weeks off treatment while her team figured out what to start next. Thankfully her second chemotherapy was easier on her little body, her counts came up and her hair started growing back. Chloe's tumor was stable every scan on the second chemo and in November of 2020 our little fighter Rang the Bell and finished chemo. Sadly, the time off chemo would be cut short by April of 2021 with tumor growth and she went back on treatment in June of 2021. This time they are treating the tumor with two seperate chemotherapies. As of now, she's been on this treatment for over a year and doing well with Stable scans. We are hoping and praying that she will be able to come off treatment for a good long time in 2023!
Something we had to learn very early on with these types of Brain Tumors is that it is a marathon and not a sprint. That Chloe would most likely be on and off treatment for the long haul and thankfully our girl has taken it in stride. It has made her the brave, sassy and beautiful little 6 year old that she is today. We have also learned that to be on this journey you cannot do it alone and that you have to allow people to help. Whether that is another cancer parent who has walked this road before you, your church, your family, your neighbors, your co-workers, a social worker or a total stranger you need people in this journey. I truly don't know how we would have been able to walk this scary road without those who have come along side our family and our girl over the past 5 years.
In the spring of 2017, Chloe was only 9 months old and we had some minor concerns that we brought up with her pediatrician. Chloe's right eye would shake and she would tilt her head. The pediatrician was concerned and asked us to make appointments with a pediatric opthamologist at the Children's Hospital in Atlanta. We were going to spend spring break with family so it was good timing.
At Chloe's appointment, the doctor was not overly concerned because of her premie birth but he did ask us to stick around town for an MRI just to be safe and know it was something she would grow out of. Chloe had her MRI 24 hours later and her 45 minute MRI turned into over 4+ hours. When they finally finished the result was that Chloe had an Optic Brain Tumor but because the radiologist on site wasn't Neuro we didnt get more information.