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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.

Friday, July 9, 2010

Round Two!

Here we are at Primary Children's and it hardly feels like we ever left. There are so many familiar faces between the staff and other parents walking the halls.

Erin had an echo cardiogram and the results look normal. Some of the chemotherapy can give her heart disease, but so far so good.

She also got the results back on her spinal tap and it was all clear. No leukemia there. There weren't any leukemia cells the last time they did the spinal tap, but they re-do it just to be sure.

Her bone marrow bioposy showed 2% Leukemia cells left in her marrow. When she came to the hospital last time and they did the bone marrow sample it was so hard for them to get the sample so that they didn't get a good reading. So we don't have a number to base results on. Usually though, patients with Acute Myeloid Leukemia have around 80%-90% Leukemia cells in their bone marrow.

2% Leukemia cells is good for now. For other types of leukemia there usually isn't any leukemia left, but because Acute Myeloid Leukemia is more severe (and more rare) they are happy to have less than 5% leukemia left. We are thankful that it is less than 5%.

We had a really fun nurse today, his name is Irish and he is probably in his 50's. He has a ponytail and a big beard and when he comes to visit Erin he tells her that she has stinky toes and she laughs about that. When we were getting settled he went over a bunch of questions with me. One in particular stood out to me. He asked, "On a scale of 1 to 10 what is your stress level?

I thought to myself, "if I say zero or one, I'll sound like I don't care. I don't feel stressed at all. I think I'll say two just to sound normal. Is this normal? Maybe I should be a 9 or a 10 because this new lifestyle should be stressful right? I wonder if I say something high if I'll get a prize or something?" My mind then wandered to a Brian Reagan blip called "Say Eight." If you haven't seen it, find it and see it. You'll laugh really hard.

I told him "two" and his facial expression didn't change. It made me think about why I am not stressed out? There are a lot of reasons, but mainly it all goes back to my very first post on this blog about the wise man building his house upon the rock. I have recently grown a deep love for the hymn "How Firm a Foundation". The gospel of Jesus Christ is a firm foundation in my life and in every condition, in sickness, in health, in poverty's vale, or abounding in wealth, at home or abroad in the hospital, I'll never forsake. I know that it is my Savior who has given His life for me and I know that He lives. This knowledge gives me hope and it is that hope that makes me feel absolutely wonderful despite what awful things are happening.

Erin started her second round of Chemotherapy today at 6:00 pm. This round is only 8 days long. She'll have 16 doses of ARA-C, 5 doses or Daunarubicin, and 3 doses of Etoposide (VP-16). She seems to feel at home here and hasn't been upset about being back. Of course, she didn't enjoy getting the dressing on her central line changed and she despises the eye drops. Time will move on and soon enough we'll be done.

We are excited that we have been accepted to stay at the Ronald McDonald house. John or I will sleep there with the other kids each night. It's a very nice set-up, and only 4 blocks from Primary Children's. We have a private room and bathroom. We share a toy room and family room and kitchen. Almost every night and some mornings different groups come in and make dinner or breakfast. Today it was the employees from Banana Republic. I'll have to get the scoop from John on how good they are at cooking. He did say that tonight they had some professional bull riders come talk to the people staying at the Ronald McDonald House and they got autographs and tickets to their show tomorrow. This is getting choppy and it's late so off to bed will go this sleep head.

3 comments:

  1. I'm so glad you get to stay in the Ronald McDonald house. On my mission we did service by making homemade cakes there once a week. If it's anything like the one in Germany, should be like home-cooked food!

    Hugs for round 2!!!

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  2. Thank you for sharing these experiences via this wonderful blog.

    Thinking of your family; hugs from New Zealand x

    (By the way this is Koru. Mana is my brother :)

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