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4 days left on blinatumomab treatment – Friday, February 12, 2016

On February 13, 2016 by


Friday, February 12, 2016…83 days in the hospital. 4 days left on blinatumomab treatment

Days just keep melting together. On Wednesday, BJ was awake most of the day but was struggling with severe joint pain and fever off and on all day. Thursday, he slept most of the day, but woke up enough for physical therapy to help stretch his ankles and calves. With assistance, he stood on the scale and weighed 126 lbs. He sat in a chair for a little while so we could change his sheets. Last night, he ate a cup of applesauce. Today, he slept again most of the day. He tried to eat a cup of greek yogurt eariler, but his throat is sore from sinus drainage, so he managed to eat half of it. A sweet friend came and gave him a massage tonight, and he fell back to sleep.

His white blood cell count is still 0.1. He’s been getting 2 units of blood and 2 units of platelets about every other day. To prevent any further nose bleeds, they are keeping his platelet count above 10k. His total bilirubin has increased over the past few days, and doctors say they are ‘worried’ about that. While there are other reasons for a rise in bilirubin (his IV nutrition, the gallbladder issue, the blinatumomab itself), they say that in the past, when the leukemia came back, BJ’s bilirubin was increasing as well. While we listen to what the doctors say, my final thought on their worry is that God is the only one who knows what is happening, and what will happen. As my brother said to me this week… ‘We are walking on water. These reports are just waves crashing around us.’ This is so true. We continue to strive everyday, even when we feel the spray of the waves on our faces, to continue to look ahead at our destination (God and his complete healing), and not on the circumstances around us. It isn’t easy. This week has been a hard week. While BJ sleeps, I pray, I cry, I plead to God, and thank him for his work being seen and also for his work unseen. BJ continues to ask for prayer and his own prayers to God are so strong. We pray together and feel the power moving through us. It’s a truly amazing thing to experience. When we are having a down day, we just start naming the positives and the improvements we’ve seen and it changes the energy in the room.

His final day on blinatumomab is Tuesday. It will be hung on Tuesday morning, and finish on Wednesday. We pray that every last leukemia cell is meeting it’s destruction, and that BJ will be ready to move into the bone marrow transplant process. When that happens, the doctors plan to use my stem cells in a haploidentical transplant process. Everything is ready when BJ is ready.

Thank you all so much for your continued prayers and support. We can feel your prayers and love.

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