Thursday, May 10, 2012

May 10th

Still patiently waiting for Lexe's numbers to go up.  The most critical one...her ANC count is still at "0".  But we are hopeful that we'll see it start to rise in the next couple of days.  In the meantime Lexe reads, watches lots of episodes "Grey's Anatomy"and anxiously awaits 9 pm when she can take her walk about the hospital.

The awful side effects of chemotherapy are starting to take their toll on Lexe's beautiful dark hair. Although it breaks our hearts to see this happen, Lexe continues to take it all in stride.  She has started to accumulate quite the collection of hats and she ROCKS them all.

Strength, hope and courage.  That is what makes a champion.  God bless and strengthen the champions who battle this hideous disease we call cancer.  You're our heros!!

Take a minute to watch these amazing kids from Seattle Children's Hospital.

1 comment:

  1. Lexe, keep on being a fighter! Back in November I was diagnosed with AML (one of the worst kinds, with FLT3 gene mutations). I went through chemo and neutropenia four times, spent a total of 14 weeks in the hospital, and had ten bone marrow biopsies. Sometimes the medicine for the infections was so god-awful crippling that I couldn't walk.

    But like you, I'm a fighter. I have goals I still want to reach, and I'm not going to let this disease stop me. There are ways to fight what's going on, even when you're mostly stuck in a hospital room. I used humor to counter the negativity of the situation. I took short walks wearing a mask and gloves, 5-6 times a day, and avoided crowds. I took naps (even in the AM) to escape the hospital scene for a short while and because the chemo does wear you out. When the chemo knocked out my taste buds, I replaced taste with texture and had cereal and yogurt instead of a regular meal. And whenever they told me something was going to be hard on me, I said bring it on because I'm determined to fight and win.

    Let me add that one other thing that helped me through it all is the AML message board, where those who are fighting or have fought AML strengthen each other with support and information. You'll find it at

    (Something else that helped, although I'm probably not supposed to talk about it, was when my golden retriever was sneaked into the hospital after dark for visits in my room.)

    My ANC counts took anywhere from 17 to 25 days to recover, and then the docs let me go home for a week or two. As mentioned above, I have an aggressive variety of AML, and I had to return for three more chemo sessions to finally knock down the blast count and get into remission. When you're in a fight like this, there's no giving up. Just keep fighting!

    There were a lot of other patients in the hospital, most of whom looked so much sicker than me. I never thought of myself as a patient, just as someone who had to be there to do some necessary business. I stayed alert and involved in my care. I said 'thank you' to everyone who entered my room, whether they came in to empty the trash or to torture me with blood culture draws in both wrists. You're not just another patient. You are yourself, so be the very best version of yourself, because that's what you're fighting for.

    As of now, I've been home continuously for five weeks, with my health and stamina improving every day. There's nothing like waking up in your own house each morning, being able to eat home-cooked food, and being able to drive and go places instead of being stuck in one place. Going out to restaurants is another new pleasure, helping to erase the memory of 14 weeks of hospital food. And I'm getting back to working on some of those goals I had before the leukemia showed up.

    Being able to do those things were among my reasons for fighting, along with family and everything else. You'll have your own reasons for putting up a fight, including making it to the college soccer team.

    Keep your spirits up. Kick this sucky disease's butt all the way out of your life, and then go on with your life, even stronger than before. Many others with AML have done it, or like me are in the process of doing it.

    You're going to do it, too. Just go for the win.