Dear family, friends and prayer supporters… the past 3 days have been difficult. On Day –5, Timothy started Campath. This is the drug we were warned about and most patients have some sort of negative effects during the first day. He was monitored very carefully for the 4-hour infusion. He was hooked up and were administered multiple pre-meds. Timothy fell asleep shortly. Within the first hour, he had chills. See picture below…
The second hour, he woke up and vomited all over both of us. The third hour, he developed a high fever and shortly after started having seizures. Multiple doctors and nurses gathered to stop the seizures and stabilize Timothy.
This was after he stabilized.
We are not sure what exactly caused the seizures. It could have been a febrile seizure due to his compromised health condition. It could have been the previous chemotherapy. Or any other complications. The neurologists were consulted and a CT scan of his head was done. Because of this unpredictable complication, we were transferred to PICU (Pediatric Intensive Care Unit) that evening to be monitored more carefully. And to top off the day, Timothy’s brain was so wired he could not fall asleep that night… that is until 5 am. I had to ask the PICU staff to help him sleep. Needless to say, Day –4 was very very very cranky. He was inconsolable most of the day. Lack of sleep, multiple drugs and its side-effects, plus the stress his body went through with the seizures with the added separation anxiety made for a difficult day. Thankfully, after a thorough observation, we were transferred back to the BMT unit last night.
Today Day –3, was the same preparative regimen as the past 2 days. He is closely monitored with Campath. He still has intermittent fevers and a little bit of low blood pressure, but no other side-effects. They changed his anti-seizure meds. Timothy was very tired today. He took multiple naps. He had another x-ray and CT scan of his chest. He is currently in isolation due to a questionable chest x-ray reading. Hopefully, the CT will come out clear.
Tomorrow is the last day of the preparative regimen. Then on Tuesday, he gets to “rest” from chemo. And Wednesday is the infusion day.
Thank you for reading and praying for our little guy. We are so grateful. I wanted to update you on what has been going on. As for me, everything is still very raw and too tender… even for me to share. It was emotional and heart-wrenching. I doubted if we made the right choice. Physically and emotionally, I was at wits’ end. I can’t talk about it too much just yet.