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.

Tuesday, June 8, 2010

Acute Myeloid Leukemia: Half way to 10 days of chemo.

We had some fun visits yesterday from Grandma & Grandpa Hughes and Aunt Annette. They got to see Erin who is battling her Acute Myeloid Leukemia M7, but they came just as she fell asleep and she had a 3 hour nap so I was sad that I didn't get any pictures of them holding her. I'm glad she slept so long, it's been the longest stint of sleep she's had. It was wonderful for me to visit with our family and spend some time out of the hospital room.

Our good friend Cris came to visit again and we got her to wear her mask/necklace yesterday (almost over her nose/mouth) and her ANC (fighter white blood cells) were at 700 so we had fun making hot chocolate at the kitchen set in the toy nook. And then yet again, Erin ran up and down the hallways. A normal person has an ANC of 2000-3000. The doctor said she'll have an ANC of zero in a day or two.

We got back into the room at about 7:00 pm. She started feeling warm and then she started out in a rash all over her body. Her temperature was up to 103.1 degrees C. We'll know tomorrow if she has an infection after her blood cultures come back. The Resident put her on another antibiotic, Vancomycin. She's been on a different antibiotic, Fortaz since Wednesday when she had a temperature. So now she's on two antiobiotics. Once she gets a temperature we take things very seriously since infection can spread so fast in her body, they gave her tylenol to get the temperature down. I hope that getting out and running the halls didn't make her sick.

Her temperature went down to 100.0 degrees C by the time they started her 5th round of chemo at 10:30 pm. She's getting accustomed to a very late bedtime (and so am I). Sometime in the night she woke up and was very upset. She was just scratching her scalp and pulling her hair out and her forehead and nose area was very red (and still is). The doctor decided she developed Vancomycin Red Man Syndrome which is an allergic reaction to the drug. So now she's on Benadryl for the allergic reaction. She's still going to be on Vancomycin for infection, but from now on we'll give her Benadryl before the Vancomycin. I have a whole white board covered in the names of the drugs that are being given to my sweet baby.

There are some things that are just not fun that go along with the chemotherapy. She is always hooked up to an IV that pushes fluid through her body so that the chemo doesn't stay in her system too long. Because of the fluid she pees a lot and we are on a strict every 2 hour diaper changing schedule. If I go too long then she leaks on whatever she's sitting on. If she's sitting on me, then I have to take my clothes off and seal them in a plastic bag. I have to wash my clothes 2 times in warm water. We have to change her bed so many times. When we change her we have to wear plastic gloves and there are so many precautions we take.

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

2 comments:

  1. Hi Jill. I found a fun designed face mask with Disney characters on it. You should get them in a couple of days. Hopefully Erin will like them and it will be a little easier to get her to wear them!
    Love you.
    Mary

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  2. Mary, thank you so much! I hope it works. You are the sweetest!

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