Andrew was diagnosed with Erythroid (M6) Acute Myeloid Leukemia on November 4th, 2010 when he was almost 5 months old. Andrew is currently in remission from his cancer, after finishing his 5 rounds of chemotherapy. He is a healthy, happy toddler.

Sunday, February 6, 2011

Aspirate & LP Results

Last Thursday we headed back up to Primary's to have a bone marrow aspirate and a lumbar puncture to check for leukemia cells in his marrow. They gave him some ARA-C in his spine because often when the leukemia relapses, the spine is the place it comes back. They just called us to tell us his marrow is clear, so that is fantastic! Although it is rare for a relapse to occur between rounds, it is certainly possible, and they need to change tactics if the cancer is taking a more aggressive turn.

This was the third time I went to the RTU (rapid treatment unit) with Andrew for an aspirate. I was pretty used to the protocol by now that I would bring Andrew into the room for the surgery, and be with him when they put him under. They gassed him the first time, used Remifentanil through his broviac line the second time, and used Remi again this last time. He was fighting it, so I stayed a bit longer than the last time to try to keep him from rolling off the table. The nurse said she would take over, so I left as usual. Apparently, only moments after I left, he started having a reaction to the Remifentanil that made his chest wall muscles become so rigid he couldn't breathe. They told me his oxygen dipped, so they had to intubate him until the drug had metabolized, then his muscles relaxed and they took him off the oxygen. They told me if he had become more rigid, they would have given him a paralytic and kept him intubated. Apparently you can develop a sort of resistance to these drugs so that you'll need more of the drug to have the same sedative effect, but the amount they used on Andrew was too much for him. Muscle rigidity is a known side effect of this drug to everyone when administered at high levels, but now along with morphine and codeine derivatives, we'll have to cross the fentanyl family off the list. This is not a great thing because it's a pretty big family of drugs.

I am glad for the protocol the doctors used in this situation--first, that they didn't have me in the room during the procedure even though it is routine, because I would have totally panicked. Secondly, I'm so glad the anesthesiologist took me in the room where Andrew was before he started telling me everything so I could see he was okay instead of panicking, wondering if he was really okay. I was only half listening to what he was saying anyway, and I wouldn't have listened any better outside the room.

This was a not-so-gentle reminder to me of the seriousness of Andrew's condition. That if just one little thing goes amiss, it can have life-threatening consequences. I know Andrew is a whole heck of a lot less maintenance for me than some other kids in the ICS, but I just hope I don't do something stupid like forget to ethanol his lines when I flush them, or forget to give him his oral meds, or get him around someone who's sick, or just something that will land us in the PICU.

Anyway.... It turns out he's still on track for his height, but he's dropped a few percentiles in weight. It is true his appetite hasn't been up to par this last round, and I know it'll only get harder, but we're just grateful he hasn't lost weight so far. He's been holding strong at around 18 pounds, so our job is to fatten him up as much as we can over the weekend before he starts chemo on Monday.

3 comments:

  1. Dear Lizzie and Stew, I am grateful for the blog, because it is a really good way for all of us (out here in the wings) to be aware of what is happening with you three dear people. And it saves you time and strength of relating the same things over and over again to so many people who care. This recent post makes me grateful for the backup systems that these doctors have established when unexpected things happen. We keep thinking of you and praying for precious little Andrew and his amazing parents. . . .

    Much love,
    Anita

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  2. Wow. Lizzie, I cannot believe how difficult this must have been. I am so thankful that he is okay. I'm glad you weren't in the room, I would have freaked out too!

    You are such a wonderful mother and Andrew is in good hands.

    As for the weight. . . Erin barely gained anything (not more than a pound) for the 7 1/2 months we were there!! We was never on TPN.

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  3. We constantly keep you in our prayers. This is a very long haul for all of you, and we pray you will stay strong. Love you all lots and lots!!

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