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10 More Days

August 17, 2009

Lugging the pink backpack, full of things to do, to the car, after our almost 4 hours at the outpatient clinic, I felt surreal. This must be happening to someone else. Even after seven months of treatment, I can’t believe my daughter has leukemia. Also, I cannot believe that we have to do this Delayed Intensification again in 67 days.

Isa seemed to be feeling okay. Then the bottom dropped out of her counts. Her white blood cells do not exist, well, only .4 of them .  Normal is 5.0. Her platelets plummeted to less than 4,000. Normal is 150k.  After she was transfused with someone else’s platelets she only came up to 44k and then those were decimated by the drugs.

Ara-C kills. I can’t say only that one, maybe Cytoxan too. Those drugs are heavy duty. Hardcore Killers.

The transfusion she received on Friday helped her red blood cells for sure! Her hgb is 10.1 and RBC 3.22. Still low but good.

Let’s review.

  • Monday Transfusion 200 ml of A+ platelets, Transfusion of Packed Red Blood Cells  >>>>  sent to ER at 5:30. Couldn’t be admitted via clinic for some reason.
  • Tuesday Nothing exciting here!
  • Wednesday discharged at 5:00 after NO culture growth, NO fever and an increased ANC 180.
  • Thursday Back to clinic for Vincristine, PEG, and transfusion 200 ml platelets. Went home.  Fever spiked.  ER. Admitted. ANC 40.
  • Friday Transfusion of O+ RBC  ANC 0.
  • Saturday Transfusion of 200 ml platelets. ANC 192.
  • Sunday Pretty quiet day at home.

This brings us back today. The discharge docs wanted us to have Isa’s blood checked today. We discovered that her ANC 24 is down, unless they had the wrong information at discharge. BUT her RBC and Hgb are okay.  We are dealing with platelets and WBC.

She was pretreated today before transfused with 100ml of platelets, with Benadryl and Tylenol. Yet, as I type, I checked her and she feels warm. I will take her temperature shortly. This fever thing has been a roller coaster. And no one can explain why it is happening. Just, oh, No infection, off you go. The western medical community is in the business of PRACTICING medicine.  The closest explanation is that the neutropenia can cause a fever, the low WBC count.

Ending the week with FIVE transfusions. That is more than she has had total up till now.

6 Comments leave one →
  1. August 18, 2009 4:11 pm

    Wow. You guys are really toughing it out. I hope the next 10 days go more smoothly for all of you. I’m totally dreading DI for Maren, but Isa is giving me courage. I’m sure you know this, but Isa is just adorable. What a sweetheart.

    • August 18, 2009 8:44 pm

      Isa was rocking the Delayed intensifciation up until uh, Day 40 when everything hit the fan. The more stressful the healthcare situation the more stressed the family becomes. It is like a domino falling it hits the rest of them.

  2. August 18, 2009 8:42 am

    Praying for your sweet girl…

  3. August 17, 2009 11:45 pm

    This is so sad. And scary. Stopping over from SITS. Will pray for your sweet baby girl today!

  4. alt permalink
    August 17, 2009 11:36 pm

    How you have any ability to remember all of this & then write it down is just amazing. I am sending you serious positive energy and lots of prayers. I truly hope it helps. Isa picked the right momma. Here’s hoping she doesn’t have a fever for a very long time and that her ANC goes up, up, up. You know I’m an idiot, but I do care so much. xoxoxo Call/tweet/text me if you need anything. I’m around, and round. xoxoxoxoxoxoxoxoxoxoxoxoxo

  5. August 17, 2009 10:53 pm

    Oh my, my heart just goes out to you & your family. I can’t even imagine how hard this is on all of you. You are all in my thoughts & prayer.

    (via SITS)

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