Monday (Day 25 post CART cell infusion) ....
Sorry for the delay in giving you a BJ update. Between total exhaustion, watching BJ constantly, and being away from my laptop, this is the first opportunity I've had to focus on writing.
BJ was moved to the Pediatric ICU early Saturday morning for respiratory distress. His oxygen sats (amount of oxygen in his blood) kept dropping even with 6 liters of oxygen flowing through his nasal cannula. His heart rate reached over 200 bpm, and his respiratory rate was in the mid 50s. He was working very hard to breathe. (Normal heart rate for BJ is 60-70 when he's awake; and a normal respiratory rate is 12-18.) As soon as the decision was made, a team from the ICU came over to move him. As they were moving his bed out of the room, he looked at me and said "Mom! I love you more than anything! It's going to be alright! I promise!"
In the PICU, he was put on 40 liters of oxygen through a high flow nasal cannula. This helped bring his oxygen sats back above 90. He was given IV Dexmedetomidine to mildly sedate him. His blood pressure started dropping after the move, so 1000ml of saline was pushed through his port line and a dose of Epinephrine was given to raise his pressure. After the fluids and Epi, he was maintaining a normal blood pressure again. Several IV sites were also placed so they could give him medication without interrupting the TPN (IV nutrition) that was going in through his port line. He had an IV placed in the back of both hands, and on the side of his right big toe. The doctor also put an arterial line in his left wrist, so they could monitor his blood pressure and easily draw blood for labs. The doctor said that if he didn't maintain his oxygen levels, they would have to intubate him and put him on a ventilator. Thankfully, that never needed to happen. After an hour or so, he was calm and his vitals were stable.
When a patient on this clinical trial meets a certain criteria after cell infusion (including low blood pressure and requiring high flow oxygen), a 'rescue' drug called Tocilizumab is given. Giving Tocilizumab calms down the side effects of the release of massive amounts of toxic chemicals that happens during the breakdown of leukemia cells. Tocilizumab will not destroy the modified T-cells. Within an hour of receiving Tocilizumab through one of his IVs, BJ's temperature decreased. At the onset of this treatment, his bone marrow was packed with leukemia, and his peripheral blood also had a very high concentration of leukemia, so when his CART cells started working, they had plenty of targets to kill. BJ's body was the battlefield, and he still has a lot of damage and inflammation from leukemia's last-ditch effort to take him down.
With the addition of Risperdal, and high fevers being gone since Saturday afternoon, the delirium is not as acute and periods of confusion are less frequent. The doctors believe this will completely resolve with time and sleep. His breathing status has also improved over the past 2 days. His heart rate and respiratory rates are almost normal, and he is slowly being weaned from the high flow oxygen. The goal is to be able to move him back to his room in the bone marrow transplant unit, where things are more familiar to him. Hopefully this will be in the next day or two.
BJ continues to require platelet transfusions three times each day and a blood transfusion once per day to keep him at acceptable levels. He will have a bone marrow biopsy tomorrow, which will allow us to see how much leukemia is still in his marrow. Doctors say most likely his marrow will not be completely free of cancer at this point. But BJ is a fighter, his warrior cells are fighters and he only needed the storm of 200k of them (10% of what other kids on this study received) to kick some major leukemia ass. I really wouldn't be surprised all the cancer was gone already. My kid likes to be the exception.