Admission to Cook Children's - April 10-11, 2025 Part 2
Ariana arrived back from her procedures at around 4pm. She needed to be observed for a bit since she was put under anesthesia. We sat in a consult room until we were able to go be with her.
Dr. M (oncologist) came by and stated that it was time to discuss treatment for her AML. I couldn’t believe how fast things were moving, but since AML is so aggressive, a proportional treatment was required.
Leukemia is luckily one of the most well researched childhood cancers out there. There is already a gold standard of care protocol that exists that most hospitals follow to treat AML in children. However, as with many cancers, there is more research being done to unlock the potential for more effective treatments.
Along with Dr. M was a research nurse, Nurse S, who was actively supporting a clinical trial that was for AML patients. She went on to explain that Cook Children's was partnered with St. Jude Children's Research Hospital and that Ariana was eligible for a clinical trial with St. Jude. At this point I still was processing Ariana's diagnosis and couldn't comprehend that we were talking about a clinical trial for her cancer. Even more so, I couldn't wrap my head around that it was with the childhood cancer research leader in the world.
We couldn't believe the opportunity that was presented to us. Cutting edge treatment available to help Ariana and to potentially lead to helping other children with AML. However, I had a pit in my stomach. Our oncologist explained that since it was a Friday, we could decide today to participate in the trial knowing that Ariana is currently eligible or we could wait it out for over the weekend, however, if Ariana's state degrades she may no longer be eligible for the trial treatment. How do we decide?
As with all clinical trials, they are 100% voluntary and require explicit consent. Patrick and I had what felt like hundreds of questions. Our oncologist and the research nurse graciously spent over 2 hours with us answering our questions, thinking through risk vs benefit scenarios, and discussing what the trial treatment would look like vs the standard of care. Another pro of the trial was that we would have access to St. Jude's medical team as they would collaborate with our oncologist to determine what the best course of treatment would be for Ariana.
The trial included a drug that has already been approved and being used in patients who have a relapsed AML case and is requiring Bone Marrow Transplant. This trial is looking at if patients are given the drug upfront alongside the standard of care chemotherapy, will they have a better outlook with less potential of relapse. That's the goal: to go into remission, have minimal residual disease after treatment and DO NOT relapse in the future.
After thinking and discussing it amongst ourselves, we ultimately decided that we would proceed with the trial. It was one of the hardest decisions I have ever had to make. A decision that ultimately could change the fate of my child's life and the lives of other children with AML. We felt that we wanted to do everything in our power to help Ariana overcome this disease, and this is what felt right to us.
The time was now 8pm. What an incredible 18 hours. Diagnosis, care flight, 3 procedures, treatment plan discussions, and now the moment we got to go back to see Ariana. She was ready to be seen a few hours back, but we were trying to wait to see if they could extubate her before we saw her. It just wasn't how I wanted to see my little girl. However, by this time I was aching to be back at her side and we went back to our PICU room where she was resting. She was so peaceful and comfortable and I honestly didn't see the tube or all of the lines connected to her. I just saw her, safe and sound.
I knew our journey was just beginning, but seeing all that she had endured and conquered in just one day, I knew that she would be alright and that she had the strength to overcome cancer.
Ariana started her first chemotherapy drug that evening at 11:3o PM in the PICU.
Present Update: We completed our last antibiotics for the blood infections and C Diff today! Her blood cultures remained negative and she tested negative for C Diff yesterday. We are officially out of isolation! Thank you for all of your prayers. She is smiling again and is enjoying being outside of the room!
