On June 1, 2010 our two year old, "Little Air Bear," was diagnosed with Childhood Acute Myeloid Leukemia (AML) Type M7. After enduring 146 days at Primary Children's Hospital, Erin is now in remission and living a full life at home with our family. Her strong will and constant happy smile is an inspiration to us all. Through our difficult circumstances we found great strength and peace in our Savior, Jesus Christ. Thank you for checking in on us.

Sunday, June 6, 2010

Acute Myeloid Leukemia: Our best day so far!

acute myeloid leukemia
Erin is really very happy today, she must be feeling better even though it stinks to have Acute Myeloid Leukemia M7. She has had her 4th day of chemotherapy for round #1. Only 6 more days left. I'm amazed at how well she is doing, the fasting and prayers are helping her be comfortable and happy through this painful process. Ever since we've been here there has been a warm peaceful feeling our room and I know that your prayers and fasting have helped us feel an overwhelming sense of our Heavenly Father's love.
Erin and I have had a fun time together today. I will be with her until Tuesday evening. John is at home with our other children trying to make life normal for them. Erin and I have been dressing each other up in a necklace, done puzzles, and then we both danced together. She played for 2 hours in the toy nook. This time it didn't take much coaxing to get her to wear her necklace/mask to go out to play. She made me about 50 cups of pretend hot chocolate at the kitchen set. To her satisfaction, I drank every one of her cups. Our friend Cris (from our Singles ward days) came to visit and he had hot chocolate too. Then Cris and Erin played with a huge ball. They threw it and kicked it up and down the halls of the entire unit. I chased after her with the IV rolling thingy (I wonder what it's official name is). It's hard work keeping an IV line tied up to a 2 year old while she's running after a ball and not having it pull her tubing from her chest. From the looks of her running up and down the halls you wouldn't even have suspected that she was on chemotherapy. Everyone has fallen in love with Erin. We had a few nurses just pop their heads into our room to see the cutest little girl in the hospital.
Erin's body is taking things pretty good. She's had high blood pressure all day, but tonight we took the blood pressure while she was sleeping and it was back to normal. It's very difficult to get her to stay still while the blood pressure cuff tightens. She has also developed a mild rash all over her body. It's nothing alarming and it's not bothering her, so that is good.
From here on out we'll really be worrying about her ANC (Absolute Neutrophil Count). The ANC is the fighter white cells. Today her count was 600. When it reaches 500 then she'll be very susceptible to catching anything in the air. At the end of the chemo, she'll be down to an ANC count of zero (I believe -I will have to clarify that statement with the stack of books, binders and brochures on my shelf here) The chemotherapy is doing its job of killing off the cancer cells so far. I'm not sure when, but the doctors will do another bone marrow biopsy. It will tell us how many cancer cells are left in her blood.
You'd think that we'd get bored sitting here all day, but really things are so busy. We have the nursers, doctors, social workers, and other staff visiting all the time, and we have had so many friends and family visit. It's wonderful! I feel like I'm in AML 101. I am trying so hard to soak in all the new terms and information. Sometimes it all blurs together. We've been taking notes and we have all her medications and information about them written on a big white board in our room. It's like going back to college again, only this time the information is life saving.
P.S. if you want to check up on accurate information about AML (Acute Myeloid Leukemia) http://www.cancer.org/ is an excellent source.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

3 comments:

  1. The IV rolling thingy is called an IVERT. It's a short technical term for IV rolling thingy. Michael had one when he was in the hospital. Luv ya. Aunt Mary

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  2. So I see you're passing "Medical Terms" with 100%!!!!
    The hardest part for me was going home and trying to remember all the medications. It really helps to have a notebook to write it all down and the times you give the doses.

    I'm so happy that the time is passing and that you are staying busy. I'm so grateful that Erin has had some wonderful visitors and that she's also doing so well with all of this. She is such a cute little girl! We are constantly thinking of your family and praying for you as well.

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  3. IV pole or stand, if you want to get technical. I like your name for it better, though. If anyone is curious, here's a link to a good pic:
    http://www.tekomeds.com/images/mcm/iv-pole-accessories_lg.jpg

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