February 26, 2019. BMT Day 0. Transplant day. What they call a “re-birthday”. We were filled with so much hope. This was it. This haploidentical transplant with the bone marrow from David was going to fight off all of those micro-metastatic cancer cells that kept forming tumors. We were so optimistic that this would be the cure we were looking for. We knew we had some difficult weeks ahead of us but we had been through so much we knew we would get through this too.
February 27-March 8, 2019 (BMI Day +1-Day +9) From BMT Day +1 Ariella was not feeling well. She did get out of the room a bit each day and even got to see the BSO perform Peter and the Wolf in the hospital. She got PT, did some crafts, and got some high doses of chemo. She had a visit from a friend but mostly she felt pretty lousy and was in some significant pain. They started her on TPN (IV nutrition) because she had lost a lot of weight since she was admitted. She ended up with a fever and had blood in her vomit and stools. She felt terrible. Her fever ended up being from strep pneumonia and her blood pressure and oxygen levels were low. She also ended up testing positive for the flu. She was moved to the PICU for closer monitoring and to be administered oxygen if needed. We had to completely pack up her room at midnight when she was transported to the PICU. I thought it would be a quick stay. Had no idea what we were in for.
March 9, 2019 (BMI Day +11). Ariella was on oxygen but her lungs had worsened and the nasal cannula wasn’t doing the job. They tried a mask but that caused her to panic and her oxygen level very quickly dropped. They were on the verge of intubation but they ultimately found the right oxygen delivery without having to intubate. David and I were taking turns at the hospital so I had left. Very shortly after I got home I got a call from David that her blood pressure dropped and they were having trouble controlling it. They put in an arterial line to keep a closer eye on the BP and gave her meds. I felt I had to be there so quickly went back to the hospital.
March 10, 2019-March 14, 2019 For the next few days things were up and down. She was showing signs of VOD (veno-occlusive disease) which affects the blood vessels of the liver. So she was given yet another medication for that. She was on bipap for oxygen and it seemed to be doing its job. Fever was gone, heart rate was down, and BP was controlled without meds. Ariella was of course scared and frustrated throughout all of this. She even yelled at us which made me quite happy. But as some things were improving (her chest x-ray and liver) her kidneys were not doing their job. So something else to monitor and hope was going to be reversible. During this time Ariella had the start of engraftment of the the bone marrow which was great news. But she also experienced engraftment syndrome and they warned us things would get worse before they got better. Her lungs became more fluid-filled and intubation was being discussed as a strong possibility. By March 14 things seemed to be headed in the right direction. She had full engraftment, kidneys, liver, and lungs also all showed signs of improving. She was still on bipap for oxygen and they even reduced the amount of oxygen she was on (though she was still on the same amount of pressure). She was getting PT and OT and she was more alert and communicative.
March 15, 2019 I was at work when I got the call from David that they were going to have to intubate. I rushed to the hospital and I got there as they were prepping for the intubation. All I could see was the panic and fear in Ariella’s eyes. She was so upset and terrified. And so was I. I knew. I just knew. If she went on a ventilator she was not going to come off.