Kylie is a beautiful and rambunctious 4 year old who was diagnosed with Acute lymphoblastic leukemia (ALL) in July of this year. She is the daughter of Heidi and Daniel. She is also the youngest of 3 kids; Isa (10) and Carson (8). All three kids are homeschooled by their mom, Heidi.
Kylie is not my daughter, but she is like one of my own. My daughter, Finley, and Kylie have been friends since they were born. They are only about 6 weeks apart and act like sisters.
This is Kylie story…
In September 2012, Heidi and Daniel approached our family with an opportunity. They were moving to Chattanooga, TN. to start a church and wanted us to join them. Our initial reaction was thanks but no thanks. But within a few days we knew God was calling us to go with them. In January 2013, our families moved together and in September we had our first weekly service, with Daniel being the lead pastor.
Shortly after the move, Heidi and Daniel shared with us that they were starting the foreign adoption process. They were quickly matched with a 5 year old boy in Uganda. Over the next year they did all of their paperwork and finally in March they received their court date. Heidi and Daniel quickly packed and jumped on a plane to Uganda to get their son. Daniel was gone the first 2 weeks, but then needed to return to the states. Not expecting the process to take so long, Heidi stayed back in Uganda with their son. Over the course of 8 weeks, they went to court hearings and doctor’s appointments. Things were going well, and they were in the last stage of receiving his visa. Through some investigations, things began to quickly come undone. Heidi had to make the hard decision to come back home while they waited for the visa. She arrived home the Saturday before Mother’s day.
While she was gone, Kylie began to not act like herself. She is normally a very high spirited and independent child. She began to cry for her mommy, which was understandable since her mommy had been gone for so many weeks. Then at the end of April, she spent the night at our home for my daughter’s birthday. That night she came down with a virus and began throwing up. We kept her with us through the night just thinking it would pass. The next morning she continued to get sick and didn’t seem to be getting better. We all just thought it was a virus and would pass in a day or so. A few days later, Heidi returned home. Once Heidi was home, Kylie became very attached to her. She hated to leave her side, which is to be expected after her mom had been gone for 8 weeks but was unlike Kylie! Any time Heidi would leave her side she would get very upset. Initially everyone dismissed the behavior as missing her mommy. Over the next 2 months, Kylie continued not to act like herself. It was starting to get past the point of just missing mommy and getting readjusted. And Heidi began to worry that something else was going on.
In mid June, Heidi and Daniel received word that they would no longer be able to adopt their son. At the same time, Kylie began to run a fever; she was bruising easily, and was always tired. Heidi initially thought she might just be anemic and had a virus. We were approaching the 4th of July and they would be going out of town on a family vacation. During a play date Heidi was telling me about how Kylie was acting and showing me the bruises. I suggested she take her to the doctor, just to make sure. The blood work would take some time and should be back by the time they got home for vacation. Heidi said to me, she thought it might be something more serious then anemia. Due to the holiday and schedules, she was not able to get Kylie into the doctor and had planned to take her once they got home. They left for the beach that Sunday.
On Monday night I called Heidi to ask her a question, and she told me how tired and lethargic Kylie was. She normally loves the beach, and all she wanted to do was sleep. She also had little red dots all over her skin, like she had been poked with a needle. Heidi called her dad, who is a doctor, and he told her to take Kylie in the ER first thing in the morning.
They next day I woke up to several text messages from Heidi. The first came in late Monday night saying they would be taking Kylie to the ER. The next came early that morning that they were on their way. Within an hour of getting to the ER, the doctor was preparing them for a leukemia diagnosis. Her initial blood work came back negative, but all her symptoms pointed to leukemia. They transferred Kylie by ambulance the Children’s Hospital in Orlando. They stabilized her and gave her several blood transfusions over the next few days, and then next day a bone marrow biopsy was done. This would tell them immediately is she had leukemia or an auto-immune disorder. The biopsy confirmed it was leukemia. The next day they found out what kind, ALL.
Kylie was then transferred back to the Children’s Hospital here in Chattanooga, where she spent the next 3 weeks. She had more blood transfusions, almost every other day. They did another bone marrow biopsy to determine how much leukemia was in her body and they put in her chemo port. The biopsy came back with 85% leukemia blast cell in her bone marrow. The doctor’s immediately started her on chemo and would do a spinal tap chemo every week during her first round of treatment.
At the end of her first 5 week treatment, they did another bone marrow biopsy. We were all praying for a low blast cell count. The test results came back with less then 5% blast cells just after her first round!! God is so good! Just after her first round of chemo her bone marrow was no longer producing the leukemia blast cells! The chemo was working!! At the end of July, Kylie was allowed to go home. She spent 26 days in the hospital.
Kylie still has a long way to go in her treatments. She has 6 rounds of chemo total. She is responding wonderfully to the treatment. Her parents are planning a head shaving party, and Kylie keeps asking when she can do it. This girl isn’t afraid of anything, and she is already showing her cancer who is boss.
Kylie’s FB page: https://www.facebook.com/groups/1443369125933962/