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Day 29 Busts

November 30, 2009

Today, Isa  just had her blood checked, most of it looked good, but her ANC was only 665 which isn’t high enough to start the next segment. The next segment contains some hard core killers.. Like if these drugs were people… think solitary confinement  or death row.  So rather than take the risk at taking her too low, too fast, the protocol states to wait.  The doctor decided to wait a week.

With her numbers as they were, a week will definitely help her reach the goal ANC, but then again, I’ve seen other kids whose ANC stayed low for several weeks. The blood has a mind of its own. This sounds scary, so i will let that image just sit with you.

We inch toward long-term maintenance. Most leukemia families talk about LTM as if it were the holy grail. I’m ready to be done with the hospital all together and LTM still has hospital visits and chemotherapy.  At least done doing it alone, all the packing and organizing and getting up early is tough for me to do alone.

7 Comments leave one →
  1. Quinn's mama permalink
    December 4, 2009 3:11 am

    Okay, truth be told we bring a stroller to carry the “supplies” ie snacks, drinks, change of clothes, blanket, pillow, and meds. I bring my backpack to carry the laptop to access online playhouse disney, my purse.. well for my stuff, and then a bag of toys. My husband brings a backback for his computer, waters, books, magazines, etc. At this point we nned lockers at the hospital.

    Just a thought but at this point my entire 401 k plan, Quinn’s college account, and savings account is going to Children’s hospital. At least they could offer us a locker? After all we do spend more hours at the hospital on clinic days than we did on an average day of middle school. Stay stong Ms. Isa and DMM. We think of you all often.

    • December 6, 2009 11:17 pm

      So glad to know I am not the only one. I carry a lot with me anyway and have for years and years, but carrying the stuff for the kids is new. And I carry a lot, cuz I never know what I am going to want to do. Lockers would be something that would make sense. BUT it doesn’t fit in with the decorating….I guess.?

  2. December 2, 2009 4:41 pm

    Hey Phoebe,

    Just wanted to drop in and say hello. I had lost your web site and then when you signed Hannah’s today, I just had to come over here and say hello. I hope all is going well or atleast as well as it supposed to be at this point. I don’t know much about long term maintenance. I wish I could give you some advice. There is a person I know that maybe able to give you more advice. Her son Carter is in maintenance now. Her name is Alice. Here is the web address. Alice may be able to give some extra support. Hope to hear from you soon. Take care, Laura (Hannah’s mommy)

  3. Quinn's mama permalink
    November 30, 2009 8:49 pm

    So sorry but LTM sucks too. Your just at the Hospital a little less. Quinn is off chemo this week too. She is in LTM and her ANC is 270. Why? Don’t know. So I guess both of our local pharmacies will get a break from us.

    I haven’t done a hospital day by myself yet. Quite frankly I am scared to. Good for you. You all made it out in one piece:)

    • December 1, 2009 9:29 am

      Read your update! Good luck, hospital days alone are tough. I tend to bring too much and carry it and her.

      • December 1, 2009 11:10 pm

        LTM ain’t no holy grail, DMM! That being said, it’s a hell of a lot better than front-line treatment. It all pretty much sucks, though.

        But you’ve got keep moving forward, and looking forward to moving forward (redundant or whatever, but I’m tired), or you’ll go insane. And appreciate the small things, as I know you do.

        I do the hospital thing alone. I didn’t in the very beginning, but my husband can’t leave work that often, so it’s out of necessity. You should see me — I’m a veritable bag lady. I bring everything. literally. I’ve actually found that doing it “alone” gave me an odd sense of empowerment. Have no clue why, really, but it did.

        Oh, and in reply to your post on Elke’s CB page, I think (aside from being new in a community), having elementary school aged children really makes a difference in the connections you make. I know people around us with just preschoolers who feel kind of isolated. But with my older girls in elementary school, there was an instant network of school families, soccer/lacrosse/swimming families, etc. I was never one to ask for help, but this journey is a long one. Really, really long. I hope you get some help when you need it. But if not, you know that there’s a virtual community on-line here that really, truly gets it. Because we’re there too.

        Btw, we thought the first half of DI was worse than the second half. But every child is different.

        I can’t read the tweets because they’re making me hungry (non-sequitor, I know, but I thought I’d mention it).

        • December 2, 2009 1:12 pm

          Keep on keepin’ on as they say! I had to use the stroller at the hospital the other day I had so much stuff. I have always had a problem worrying about having enough stuff to do.

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