Today was another day of chemo to kill her Acute Myeloid Leukemia M7, yet it's been Erin's best day so far. Have you seen the movie "What About Bob?" I love to liken things to the "baby steps" philosophy that is used in that movie. We are taking "baby steps" through this new life with cancer. Our "baby step" today was to get Erin up and walking. She's been in a lot of pain from the spinal tap and bone marrow biopsy that she had on Wednesday. After breakfast (she ate one bite of scrambled eggs) I gave her some markers and a coloring book. She rolled over off her back and sat on her knees and colored. This was a first because pretty much since surgery on Wednesday she's been laying in bed.
I asked her if she'd like to visit the toy nook in the ICU (Immunocompromised Unit) where we are staying. She was excited about playing with toys. While she was still on the bed I opened the door to her room and I showed her a little tykes basketball hoop that was just outside our door. She yelled "soccer balls!" (to her any ball is called a soccer ball) and said she wanted to go out and play. We told her that we wanted to take her out to play but that she had to wear a mask over her mouth and nose to go out and play.
Masks are going to be a big part of our lives from now on since she can get sick so easily. Remember, Erin is almost two years old. Two year olds don't think rationally. She doesn't understand why she needs to wear a mask. In fact, she hates the masks. So, the mom in me got really creative.
"Erin here's your mask, let's put it on."
"Hey look Erin, Mommy gets to wear a mask too (nurse finds mom a mask)".
"Hey look, daddy gets a mask too." (Nurse brings dad a mask. Then I try to force Erin's mask onto her head.
This is a fruitless effort. New tactic. "Oh Erin, daddy looks funny in his mask. What does he look like?" She give us a confused look. I say, "I think he looks like monkey." I search for a marker and I draw a monkey on daddy's face mask. (he he, now he looks really silly)
Daddy says, "I think mommy needs a monkey on her mask too." Dad draws a monkey face on mommy's mask. (I think my monkey was better than dad's but don't tell him I said that.)
She starts to think we are funny and we give her a mask to just hold in her hand, but she won't let us draw a monkey on her mask.
"Oh Erin, your snugly bear needs a mask too if he wants to go out and play." (She thinks this is pretty cool and is starting to warm up to us, but she still won't put the mask on)
I grab a plastic necklace and give it to her. "Hey Erin, here's a necklace do you want to wear it?" "Sure" she says.
"Oh here's another necklace!" I show her the mask in her hands. (the nurses decide that if she wears it as a necklace then that is good enough for now)
Erin puts her own mask over her head. This takes several minutes while we wait for her to do it by herself as she says, "I wanna try." She doesn't want us to help her put it on. Hooray! She gets the mask on. Oh, but wait. She doesn't like it. Off it comes.
I try another new angle. I take her to the door and let her look out her window into the hall. I point to the toys and say, "Do you want to play with those toys?" She nods "Yes". I reply, "well then, you have to wear your necklace (new name for mask)." "Okay!" She says.
Necklace/mask goes on and out the door we go. Freedom. This is a new world for her!
We had so much fun getting her to walk (she teeters still from the pain of the surgery) and stand and play. We met 2 other little girls at the toy nook. One (from Idaho) was recovering from a kidney transplant and the other one (from Montana) had another form of cancer. These girls played around the table and it was fun for us parents to chat. It's so comforting talking to other parents in a similar situation.
Well, we feel triumphal having gotten Erin up and out of her room AND we got her to wear the mask. I mean, necklace. :)
Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"