Thursday, Dec 3, 2015 (Day 28 post CART cell infusion…6th day in PICU, 14th day in the hospital)

On December 4, 2015 by Michelle Love

Thursday (Day 28 post CART cell infusion…6th day in PICU, 14th day in the hospital)

With all the awesome improvements yesterday in BJ’s respiratory function, having a bite to eat, and the decrease in his delirium, it was an unexpectedly rough day today.

Results from BJ’s bone marrow biopsy showed blast cells, and blasts showed up in his peripheral blood again today. His white blood cell count was up to 0.5. The doctor is concerned about the upward trend in his white count. At this point in the process, his WBC should still be around 0.1. They are hoping that with more time, the CART cells will start bringing the white blood cell count back down. His liver and spleen are still enlarged and the doctor is concerned that they are filled with leukemia. His lymph nodes are still lumpy, and those could be filled with leukemia as well. This news…seeing the concern in the normally optimistic doctor’s eyes…it just didn’t land very well on this sleep deprived momma. And when I leaned in to hug my son and whispered “I love you”, and he slowly put his arm around me…and made sounds that I knew were “I love you too”….I couldn’t hold back the tears any longer.

BJ continues to be non-verbal, and seems a bit worse today. He was visited today by a Pediatric Neurologist, who determined that the issue was specific to forming speech. His CT scan from yesterday didn’t show any changes. He was able to communicate a little on a white board today. His hands are very shaky, and he is extremely weak. He has to have help positioning in bed, and getting out of bed. He has lost a lot of muscle mass in the 3 weeks he’s been in the hospital.

He had a multiple platelet infusions overnight and this morning, so that he could safely have a spinal tap this morning. They were able to get his platelet count up to 24k. His doctor was eager to get a sample of his cerebral spinal fluid (CSF) to check for the presence of leukemia cells. Afterwards, he excitedly told me that there was only 1 white blood cell and 1 red blood cell in BJ’s CSF. It was awesome to hear that good news today. I couldn’t stay in the room while BJ had his spinal tap, so I took the opportunity to go take a quick shower back in his room in the bone marrow unit while I couldn’t be beside him. When I came back, he was trying to tell me something, so I gave him the white board. He wrote “I hate you missing my LP”. It just crushed my heart that he wanted me there and I wasn’t. I explained to him that I couldn’t be in the room during the procedure, and then he wrote, “I was awake”. They didn’t put him under anesthesia like every other spinal tap he’s had over the past 3.5 years. Every single spinal tap, and every single bone marrow aspiration, I have been by his side as the anesthesia puts him to sleep. He has drifted off every single time, looking into my eyes, and I tell him I love him as he falls asleep. Every time. I have lost track of the count, but it’s been the same every time, until today.

Later this afternoon, BJ wrote “Let’s go”. Oh how I want to take him out of here!! I showed his nurse, and she decided that we would put him in a wheelchair and get him out of this room for a while. We actually saw sunshine. It was great to see BJ shake his head ‘no’ when she asked him if he was ready to go back to his room. When we brought him back, he fell asleep again.

Earlier tonight, BJ put everyone on their toes. He was just laying in bed and had just had some blood drawn from his port for some labs. (They removed the arterial line in his left wrist today, which is where they had been drawing off blood for labs.) Out of the blue, BJ’s heart beat stopped for 8 seconds. His face turned red, and his breathing quickened. Then everything went back to normal. He shook his head ‘yes’ when asked if he felt something weird in his chest when that happened. They checked his electrolyte panel, did a chest x-ray, an ECG, and checked his blood sugar. Everything was normal. There was nothing that pinpointed what caused the long pause in his heart beat. Cardiology will come see him in the morning, but for now, everything looks normal.