2016 was supposed to be a great year for myself and my daughter. My mother invited us on a road trip for spring break and I gladly took her up on the offer. We went off to New Orleans for good food and some fun time, deciding to break it up and stop in Memphis Tennessee to go to the zoo. We were so excited, but 20 minutes into the trip, Ariel didn’t want to walk anymore. She screamed and she cried, but thinking she was being a moody three-year-old, I made her walk anyway. We had two other kids her age doing it so why couldn’t she? By the end of the zoo trip, she had cried herself to sleep. We got to the hotel and crashed. The next day we drove to Natchez, Mississippi to see all of the cool houses, and ended up getting a horse buggy because, once again, Ariel would not walk. The same thing happened in New Orleans. By the time we got home, I was so upset with her because she refused to walk the entire trip! I had no idea the devil we were going to have to start fighting. A month passed; I had moved back to West KY with my mother when I started to notice Ariel sleeping all day and it was getting harder to wake her up.
I got a job at Tractor Supply and since it was my first day I decided to stay until 5 PM to get all the training I could. When I got to my mom’s, she told me Ariel had slept all day and she couldn’t wake her up, so I went to Ariel and woke her up but she was very lethargic. We decided to take her to Murray, KY, to the walk-in clinic that stayed open late. When we got there, we thought she had a bad cold or a UTI. They took a finger prick to test Ariel’s blood and came back immediately to tell me I needed to go to the emergency room to have more testing done. I was a little confused but I wasn’t worried because she had never been sick, so I was sure she would be fine. We got to the ER and the nurses helped us immediately, putting an IV in Ariel’s arm, and when she didn’t even budge, I knew something was wrong–I just didn’t know what. The doctors came back and told me we needed to take her to a specialist because her blood count was low. I thought, “Okay, we can deal with this,” and I started making plans to take her to Lexington, KY the next day. The doctor stopped me and said we needed to get to Vanderbilt in Nashville, TN as soon as possible, and that there was a helicopter waiting to take her. She needed a transfusion and they didn’t feel comfortable doing it there.
I was in shock, I was sick to my stomach. I didn’t know what was going on but I wanted answers. It started to storm so badly that they couldn’t take off so they put us in an ambulance, but even that took so long they had to start a blood transfusion on Ariel. I got in the ambulance and watched as my daughter floated in and out, watched as the blood slowly went into her little body through the IV in her arm. She was so small, so weak. I couldn’t hold her because they’d strapped her to the bed in her car seat. The ambulance sped to Nashville, and when we got to the ER, the doctors wanted to start another transfusion. I was still so confused. Her dad showed up and wanted answers, but I had none to give him. It was 6 AM, June 24th,2016, when the doctors walked into the small room which felt so crowded with an entire team in there. The doctors started to explain what was going on with Ariel and I began to get dizzy, fainting when they told me she had Leukemia. I made them repeat it twice, said they must be wrong, and when it finally sunk in I could not stop crying. I was so scared for my daughter, my baby. They told us we would be admitted and they would place a permanent IV called Nasogastric intubation (NG) where the doctors/nurses could draw blood or administer chemotherapy when needed. She started chemo immediately on June 26. Once the chemotherapy started we would get to go home. What hurts the most was when they explained that the pain in her legs was from the Leukemia, and I thought back to the spring break trip and how I made her walk, not knowing she was hurting. I felt like the worst mother in the world.
On June 26th I watched as my three year old was taken to the OR and put to sleep for surgery. She would have a port placed, a bone marrow biopsy, and a spinal tap. SHE IS THREE! That’s what kept going through my mind! She is only a baby! Why is this happening?! It was four hours later when we were called back to see her, and I couldn’t stop crying as I watched her sleep. They started chemo through her port that night. They told me the next day that Leukemia cells were in 80 percent of her bone marrow and blood, and if we had waited another couple of days she would not be here with us. That hit me hard, like, wow, my three-year-old has cancer. I didn’t even think that happened? I had no idea about childhood cancer, or what it does to families and the children involved.
She was doing well and things were looking as though we’d be going home, but the day we were to be discharged she spiked a 103-degree fever. They checked her and they found staff in her blood system from an infection in her port. They had to take her immediately to have it removed and place IVs in both her arms for chemo and antibiotics. We would have to stay 26 days until her antibiotics were done. I was crushed once again.
The entire month I held her in the bed; we didn’t get out much except to walk around the hall because she wasn’t allowed to leave the floor, so she was very cranky. We met a few friends during that time, some who are no longer with us. So many children on the floor with us and so many children that didn’t get to go home…I remember one night, a little boy passed away and I could hear his mother screaming and crying. I just held Ariel tighter and I was scared to death. I knew I could not go on without her because she was my everything.
Ariel’s hair was so long and curly, down to her booty. I loved brushing and fixing it. They told me she would lose her hair and that it would take a while, but it was gone within three weeks of starting chemo. The day it started to fall out I got this sick feeling in my stomach. This was it. This is what made it all real. She looked like a normal kid until her hair started to fall out. It started on a Wednesday and by Sunday it was almost all gone. My dear friend came to Nashville to cut her hair off to make it go easier. Her first haircut. My baby’s first haircut was in a hospital. I can never take that back, that memory, the sick feeling as I watched her hair slowly falling down her back.
We got to go home July 26th, and found out the next day Ariel that was in REMISSION!! One hard month of chemotherapy and steroids turned my sweet baby into a grumpy baby. Now we had two years of chemotherapy ahead, which we’d been told would be easier, but that wasn’t the case. We got home but unfortunately, she was back in the hospital two days later with a fever. And that was the normal thing, back and forth, constantly traveling in the middle of the night, and her being sick non-stop.
She started to develop mouth sores so bad that she quit eating and couldn’t keep anything down. Her weight dropped to 25 pounds, and she just laid around sick. We started night feeding through her Nasogastric Tube which allowed her to receive medicine and nutrition through her nose that ran down into the stomach. I got no sleep. I was up making sure she wouldn’t throw up in her sleep. I was in constant fear of something happening to her. By December we were admitted to the hospital again because her blood counts would not come up. They kept us through December and we got to go home at New Year’s. From then on we stayed out of the hospital unless it was a day or two stays for a sickness. Eventually, Ariel developed Neuropathy in her legs and hands from the chemotherapy, which got so bad she couldn’t take two steps and started having to use a walker. She also developed necrosis in her knee joints from the chronic steroid use for her chemotherapy. She has been in physical therapy since December 2016.
Things were starting to get normal since she was used to the drive to Nashville. The only thing that got worse for us was the fact that she didn’t like her port being accessed. To this day they have to hold her down for that, and it’s hard. Ariel will be done with chemotherapy in October 2018. She will be six! We grow closer every day and every day she grows stronger. No one knows why this happened to her; she was just unlucky. But I know God has held her hand through this journey and has taken care of her. There have been days that I could not deal with anyone. I would lock myself in the bathroom and just cry. It’s been so hard having to watch my daughter struggle. The fear of what could happen next never leaves my mind. But when I start to pray, things get easier and I am able to cope.
“When you go through deep waters I will be with you,”–Isaiah 43.2. This bible verse has been with us from the beginning up to now. God has a plan for everyone and one day his plan for Ariel with be clear. I just want to bring awareness to my daughter and the thousands of children going through chemotherapy. One day there will be a cure.
My name is Skylynn LaRue Fortner, mother of Ariel Fortner.