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Notes From The Inside
Childhood Cancer . Childhood Leukemia

The Warrior Battles The Cytokine Storm, Day 3

On November 15, 2015 by Michelle Love

Update on BJ…Over the past 36 hours, BJ has kept a fever between 102 and 105. Friday night into Saturday morning was rough, as his temp kept climbing, and we were anxious about how bad this was going to be, and how his body would respond. Tylenol was given every 6 hours, but did not lower his temperature. His temp stayed between 103 and 105 until about 0430 Saturday morning, when several readings were around 103. It was then that he finally slept for a few hours. He is nauseated and is still having very bad bone pain. His dose of oxycodone was increased from 5mg to 10mg for the pain. He was offered a continuous dose of morphine, with additional PCA, but he declined. He chooses to tough it out, even when his doctor tells him he doesn’t have to. He has been on oxygen since Friday night because his O2 sats were dropping into the mid 80s. He had a chest x-ray which showed some fluid in his lungs. This didn’t surprise the doctor, because at that point, BJ had received 1.5 liters of fluids. His blood pressure was being monitored every 2 hours overnight last night, and he also received a blood transfusion. His blood pressure has fluctuated between a little high and a little low…nothing that would cause alarm, but is being very closely monitored. His temperature is still between 102 and 104. He received Lasix this morning, to help remove some of the fluid. He looks very ‘puffy’…eyelids and face are noticeably swollen, and he can feel it in his hands and feet as well. He will get another unit of blood if his blood pressure drops with the removal of the extra fluid. His spirits are up, although he is VERY tired. He told me that while he feels really bad, and his bones hurt with every move, the pain he experienced in August with the fungal infection in his lungs was 100 times worse.

We’ve had some good news on his white blood cell counts. The past few values have not continued the previous doubling per day! Instead, the values seem to have plateaued. We’re cautious to celebrate just yet, because we still need a few more readings. (I’ve put a graph of the WBC readings as of yesterday afternoon for other ‘numbers’ people like me.) However, with the high temperatures, ineffectiveness of Tylenol on the fever, extreme flu-like symptoms, the rise in his c-reactive protein and lactate dehydrogenase (LDH) values, coupled with what seems like a plateau in white blood cell counts, Dr. Martin is also saying that this could be a sign of the ongoing warfare between the T-cells and leukemia cells.
First thing this morning, BJ double-checked what time the Carolina Panthers play the Titans today. He doesn’t want to miss this game. He is back asleep right now, and I really don’t want to wake him, but he doesn’t want to miss watching his Panthers win again!
Thank you all so very much for your fervent prayers! We are standing firm in belief that BJ will be healed.

#KeepPounding #CureForBJRound2 #BJStrong #Fighter
#GodsGotThis #Believe #CytokineStorm #CART19

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Tags: #CureForBJRound2, BJStrong, CAR-T clinical trial, childhood cancer awareness, childhood leukemia, Leukemia Relapse
Written by Michelle Love

I'm a mom with a heart split between my child on earth and my child in heaven.

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  • Happy 15th Birthday Carly!
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