Childhood Cancer . Childhood Leukemia
Sunday (Day 31 post CART cell infusion…17th day in the hospital)
Very emotional day. BJ’s white blood cell count continues to climb. It was 17k at midnight labs, and 42.2k at noon. His hemoglobin also dropped dramatically during the past 12 hours, from 8.1 to 6.8. BJ needs transfusions at a hemoglobin of 9 to avoid becoming symptomatic (fast heart rate, headache, pale, fatigued). He’s in the middle of his 2nd unit of blood now. His speech seems to be improving slightly and I have understood a few of the sounds he is able to make. I practically begged him to eat something today. He knows he needs to get his strength back to continue to fight this beast inside him, and he is usually completely self-motivated as the fighter he is, but with his low hemoglobin, he is just tired. So he let me feed him, and he finished a small cup of applesauce, as I relished each bite he took from the spoon. Memories of my baby boy flooding back with each swallow and opening of his mouth, as I sat on the edge of his bed feeding him, and silently begging God to save my baby.
This morning, his doctor wanted to discuss the contingent plan if his white count continues to climb. This discussion happened before his count rose to 42.2k. He has emailed the team of doctors at CHOP (Children’s Hospital of Philadelphia) to get their advice before doing anything. He would also like to see the research labs from Day 28, which should be back in a few more days. This is the same conversation we had on November 18th when BJ’s WBC reached 72k. Any chemo will kill the CART cells…and conventional chemotherapy is unlikely to bring down the leukemia enough for a bone marrow transplant to be successful. It just seems so cruel that there was such elation at the dramatic drop, seeing that the engineered cells were working, and now….now. BJ knows what is going on. He wants to look at his lab results sheet every time it is brought in. He listened to his doctor talk about needing a Plan B, and what that could possibly look like. After the doctor left, he wrote me a note… “We got options and who knows what will happen.” He has lost so much strength over the past 3.5 weeks in the hospital. He will need to regain as much as possible if he can get to transplant. Right now, he can’t move his legs off the side of the bed himself. He can’t stand on his own. This kid is an athlete..he’s a relentless fighter! Two weeks before we found out his leukemia was back, he ran a 5k in 29 minutes…while 70% of his bone marrow was leukemia cells! He has fought and fought to keep the upper hand for the past 3.5 years. It is truly painful to me for people to see him, and not realize that the almost 6′ 1″ kid they see in this bed is not the kid he really is. Dear God, Carly and I desperately need BJ. I need my son, and she needs her big brother. We need him to be well, healthy, and happy. He will continue to fight, and I will continue to be here to cheer him on, and push him when he doesn’t feel like pushing himself. I’m doing my best to trust your plan.
We need your prayers.
Sunday (Day 31 post CART cell infusion…17th day in the hospital)
On December 6, 2015 by Michelle LoveSunday (Day 31 post CART cell infusion…17th day in the hospital)
Very emotional day. BJ’s white blood cell count continues to climb. It was 17k at midnight labs, and 42.2k at noon. His hemoglobin also dropped dramatically during the past 12 hours, from 8.1 to 6.8. BJ needs transfusions at a hemoglobin of 9 to avoid becoming symptomatic (fast heart rate, headache, pale, fatigued). He’s in the middle of his 2nd unit of blood now. His speech seems to be improving slightly and I have understood a few of the sounds he is able to make. I practically begged him to eat something today. He knows he needs to get his strength back to continue to fight this beast inside him, and he is usually completely self-motivated as the fighter he is, but with his low hemoglobin, he is just tired. So he let me feed him, and he finished a small cup of applesauce, as I relished each bite he took from the spoon. Memories of my baby boy flooding back with each swallow and opening of his mouth, as I sat on the edge of his bed feeding him, and silently begging God to save my baby.
This morning, his doctor wanted to discuss the contingent plan if his white count continues to climb. This discussion happened before his count rose to 42.2k. He has emailed the team of doctors at CHOP (Children’s Hospital of Philadelphia) to get their advice before doing anything. He would also like to see the research labs from Day 28, which should be back in a few more days. This is the same conversation we had on November 18th when BJ’s WBC reached 72k. Any chemo will kill the CART cells…and conventional chemotherapy is unlikely to bring down the leukemia enough for a bone marrow transplant to be successful. It just seems so cruel that there was such elation at the dramatic drop, seeing that the engineered cells were working, and now….now. BJ knows what is going on. He wants to look at his lab results sheet every time it is brought in. He listened to his doctor talk about needing a Plan B, and what that could possibly look like. After the doctor left, he wrote me a note… “We got options and who knows what will happen.” He has lost so much strength over the past 3.5 weeks in the hospital. He will need to regain as much as possible if he can get to transplant. Right now, he can’t move his legs off the side of the bed himself. He can’t stand on his own. This kid is an athlete..he’s a relentless fighter! Two weeks before we found out his leukemia was back, he ran a 5k in 29 minutes…while 70% of his bone marrow was leukemia cells! He has fought and fought to keep the upper hand for the past 3.5 years. It is truly painful to me for people to see him, and not realize that the almost 6′ 1″ kid they see in this bed is not the kid he really is. Dear God, Carly and I desperately need BJ. I need my son, and she needs her big brother. We need him to be well, healthy, and happy. He will continue to fight, and I will continue to be here to cheer him on, and push him when he doesn’t feel like pushing himself. I’m doing my best to trust your plan.
We need your prayers.
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