Admission to Cook Children's - April 10-11, 2025 Part 1

The night that we received Ariana's diagnosis was incredibly difficult. I had to call my parents who lived 4 hours away and break the news that Ariana had Leukemia. We were all in disbelief and could not accept the news. The night crept on while my parents made their journey from Austin to the Dallas area.

Being at a children's hospital is a surreal experience. A place that you don't want to be at, but are surrounded by the colorful lights, kid paintings, fun and exciting decor that make it hopeful. We were placed in a lucky charm decorated Pediatric Intensive Care Unit (PICU) room. Ariana was in a crib hospital bed, which made my heart ache. I could not lay with her inside to comfort her and you just don't ever imagine your child being in crib that isn't their own. Thankfully she got some rest, and we just sat there in disbelief.

My parents arrived at the hospital around 5:30 AM and I gave them as much of an update as I could, but we really would know more once morning shift arrived. They decided to stay at the hospital.

Because of the results from our ER visit, an echocardiogram was ordered to look at Ariana's heart. The technician to perform the imaging arrived around 8 AM (though the timeline is very blurry to me). The tech set up and started gathering the images. Immediately the tech was concerned. She called our nurse in and probably tried to whisper, but because of the urgency and tone she had, I could hear what was being said. She said to the nurse, "We need to get the attending cardiologist now. Did you guys know about this?" My heart sank. I spoke up because I needed to know what was going on with Ariana. Of course, due to policies in place, we had to wait until the official word from the cardiologist arrived. Luckily, the oncologist/hematologist, Dr. A, that was collaborating with the ER for Ariana walked through our room door.

She came over and comforted Patrick and I. She explained that pathology had confirmed the diagnosis that Ariana has Leukemia. Patrick and I had a slew of questions, that she graciously answered. However, as the short time went on, our room quickly started to fill with more nurses and another doctor, the cardiologist. Unfortunately, I didn't catch her name, but we were thankful that someone could tell us what the technician found.

She stated that the echocardiogram showed a large amount of fluid around her heart that needs to be removed ASAP. She also mentioned that because their hospital was a smaller regional hospital, Ariana would need to be transferred to their main Cook Children's Hospital in Ft. Worth by helicopter.

My first question after hearing that was, "Can I ride with her?" And just like with a lot of the answers we had gotten that day, it was a disappointing "No."

At this point my body and mind are so numb that I can't process information that is being told to me. All I remember is Dr. A stated Ariana has cancer and will begin treatment at the Ft. Worth Hospital and that the helicopter flight crew was 45 minutes out.

Once the helicopter team arrived, things really picked up the pace. Since we were an hour away from the main hospital by car, Patrick and my dad headed out so that they could meet Ariana once she arrived. The helicopter team (Deana, Robert, and Tom) were incredible. They understood how difficult it was for me to let her go by herself and reassured that they would be right next to her and would get her to the main campus safely. My mom and I escorted her out with the flight crew, and we watched her take off in the sky at 10:30 AM with Teddy Bear Transport.

My mom and I went back to gather our stuff from the PICU room and then we left the hospital. I knew that I needed to get more things from home so we headed there first before heading to the hospital in Ft. Worth.

I had no idea how difficult being home after a life changing diagnosis would be. The first thing I noticed was Ariana's spaghetti bowl from the night before when we headed to the urgent care. Her toys left on the floor where she was playing just the day before. But the hardest place that I had to go to was to her room. I fell to the floor and just started crying. I felt confused, devastated and scared. Being in her room with all the little things as they were reminded me that we were in a post-diagnosis era. It was unreal. My mom had to come help me and remind me that we got this. God's got this.

We packed up what we could and headed to the hospital. Luckily the timing worked out great for everyone. Patrick and my dad arrived at the hospital 5 minutes after Ariana landed. They met her in the PICU. Patrick said that they brought Ariana toys to play with while we waited for the doctors to come by.

My mom and I were about 10 minutes from the hospital when Patrick called me to say that the cardiology team had arrived at her room and were discussing the treatment plan. Luckily I got to talk with them through speaker phone. They stated that Ariana presented with a large amount of fluid around her heart, known as a pericardial effusion, which was contributing to her fast heart rate and her shallow exhales. They said that they needed to remove the fluid around her heart. This would be done through a procedure called pericardiocentesis. They would also place a pericardial drain that would be outside her chest to capture any residual fluid after the procedure. This drain would be expected to stay for a few days based on output. Because of the severity of her pericardial effusion and that it was impacting her ability to breathe, this was a non-negotiable procedure. Without hesitation, we gave consent and they scheduled the procedure.

My mom and I started to pull into the semi-circle drive way at the entrance of the hospital when Patrick called again. The oncologist, Dr. M, and the Nurse Practitioner (NP) A had arrived. I remember saying "Please wait. I am just getting out at the front and would love to be part of the conversation." She said, "No worries, take your time. We will wait for you to arrive."

My body was surviving off adrenaline as I lightly jogged through the hospital until I found Ariana's PICU room. I felt so much relief when I arrived because Ariana was safe and sound after her heart wrenching departure in the helicopter. I knew we didn't have a lot of time to waste considering her cardiac state, so I jumped right into the conversation with Dr. M and NP A.

The conversation was a whirlwind of emotions. Dr. M confirmed the Leukemia Diagnosis and then stated her type of Leukemia: Acute Myeloid Leukemia, also known as AML. I will most likely use the abbreviation moving forward. Mind you it's roughly 1 PM on Friday, April 11, 2025. It had only been 11 hours since her preliminary diagnosis in the ER. But now we were here and it was real. Though, I was still in denial.

Dr. M proceeded to explain Ariana's cancer and described why her symptoms were showing up the way they do. Here were my three takeaways:

1. Unexplained Fevers - This can happen because the leukemia cells are rapidly dividing in the bone marrow depleting resources to make healthy Red Blood Cells, White Blood Cells, and Platelets. When these healthy blood components are depleted, the body can't fight off infection and recurring illness can occur.
2. Fast Heart Rate, Difficulty Breathing and Swelling - Since the leukemia was rapidly taking over, her liver and spleen were all trying to filter out the leukemia cells since the body recognizes that they are bad cells and considers them waste. However, the body can only handle so much filtration at a time and it was not keeping up. This forced the fluid to find other places to go since it could not be excreted fast enough. And for Ariana this meant fluid around her heart (pericardial effusion) and around her other organs and tissues, which is why she was so swollen and had the fast heart rate. Another complication of the pericardial effusion is that it took up a lot of space. This space mainly gave room for her lungs to expand. Hence why we were seeing her grunt and not breathing well. There wasn't enough room for her to take good deep breaths or even normal breaths.
3. This isn't our fault. We did nothing wrong and we did not cause this. This is bad luck.

That last point really struck me. How is this not my fault? I am her mother. We tried to do everything right. Breastfeeding, organic and clean foods, balanced diets, vaccinations, regular doctor check ups, dentist visits, and clean ingredient household items. And the fact is we DID do everything right and still here we are.

It honestly still didn't feel real even when the topic shifted to getting Ariana's bone marrow aspirated. Dr. M wanted to get a baseline of how her bone marrow was looking and that required another procedure called a Bone Marrow Aspiration. I think I was just in shock and wasn't really comprehending. All I knew was that Ariana had cancer, needed a heart drain and now another procedure to look at her bone marrow. Additionally, because we now knew that Ariana had AML and would require quite a bit of medication, it was decided that she would also need to get a PICC line placed.

The cardiology team and the oncology team came up with a plan to be able to complete all three of Ariana's procedures at the same time that afternoon - within the hour. I couldn't believe it. My baby girl was about to have 3 procedures, more procedures than some have their entire lives, done in a matter of minutes.

While we were in Leander, we jumped around churches and just never really settled into one community. So, when Ariana was born we started talking about where we wanted her to be baptized or dedicated at. Around mid way through 2024 we still hadn't decided where we wanted her to be baptized at and we had already played with the idea of moving to Dallas. This being said, we decided that we would wait until we were settled in our new home, find a new permanent church community, then proceed with the baptism there. Well....that didn't happen. We were on week 4 of being in Dallas, and we were still trying to find our new home church when all this was happening. All this to say, I wanted Ariana to be baptized before her 3 procedures. We called in one of the hospital's Chaplains, Terry. Terry was quite literally sent from our Lord to be with us on one of the darkest days of our lives. He came in, listened to our story and quickly worked to understand our wishes to get Ariana baptized. He mentioned that, unfortunately, a Catholic priest was not on property at this moment, but that the Catholic Church had granted the hospital's ministry to perform baptisms, when necessary. Terry went off to gather things for Ariana's baptism as we anxiously watched the clock knowing Ariana's procedures were scheduled soon. About 15 minutes later, he came back and said that he contacted the church to let them know the plans and as he was finalizing the details, he saw a priest walk through the doors of the hospital. Terry was able to quickly fill him in and the priest came and performed Ariana's baptism in her PICU room. It wasn't the baptism we envisioned but it was the one God had so graciously planned for our daughter. I just know that He sent Terry to Chaplain on that Friday and he sent the Priest to walk through the doors at our exact time in need.

The doctors then came back to our room and got Ariana ready for her procedures. Patrick and I signed consent forms as they started the medication on Ariana for pre-op. Ariana went on to have this sequence of procedures:

1. Pericardiocentesis - removal of fluid around her heart and placement of the pericardial drain
2. Bone Marrow Aspiration - Bone Marrow biopsy to look at cells to help determine her Leukemia treatment plan
3. PICC line placement

When we got back to the PICU room after Ariana went into surgery, there on the bench in our room was her printed baptism certificate, a pink and purple rosary, and a beautiful jar of anointed oil in the shape of a star.

As Patrick stated in our first post, we are about 2 weeks ahead of our initial diagnosis. We hope to be able to get you all up to speed as soon as we can. In the meantime, without all the details, I do have a current prayer request: