Lila

Lila

Tuesday, February 17, 2015

Being Brave

Whew! The past few days have been intense. Our time in the emergency room was stressful for everyone. Lila had a high fever and looked very pale. They had trouble accessing her port and then tried to put in an IV, which didn't work. For future ER visits, they say we can ask for an oncology nurse to come down from the 6th floor to access her port (or request floating nurse Chris, who was our hero!).

There was a really sweet moment when nurse Chris finally accessed the port and there were about five people in the room with a couple of us holding Lila. She stopped crying for a moment and said, "I'm being brave!" We all agreed with her. What a trooper, huh? We were in the ER for five hours and it was so nice once we got into a hospital room again in what is becoming our home-away-from-home -- 6A, the myelosuppression unit. 

Yesterday Lila was in pain and still very pale. Her ANC was 50, which is very low. ANC is a good gauge of the body's ability to fight infection. Normal is well over 1000 and anything under 500 is low. They decided to give her a blood transfusion, which she tolerated well. They also did a lot of tests to try to find a source of infection. 

Today she is looking much better and her fever has been gone since about 9 p.m. last night. Her ANC is up to 450 and that should go up more today. We gave her a bath, which she hated (and I think I noticed some of her hair coming out). She is having a lot of pain from mucositis which is a side effect from one of the chemo drugs she took during her first round, doxorubicin. She has been drooling excessively and does not want to open her mouth. When she does talk it is really hard to understand her because she has sores on her tongue. We (including her caretakers) are trying to do better about keeping on top of the pain today. 



7 comments:

  1. It's a wonder you and Luke are keeping it together, Sarah. Cancer is cruel. You guys are on my mind daily. Love.

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  2. Such a brave girl. And brave parents, too. Sending love and prayers...

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  3. As brave as they come. Kate wants me to tell Lila... "I really want you to feel better. Love, Mom and Kate"

    Love you guys. You are in our hearts and minds and prayers every day.

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  4. Prayers for Lila and parents now. -liz

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  5. Such a brave, sweet girl. Praying for all of you.

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  6. Praying peace, relief, courage and strength for you sweet Lila!

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  7. Yall must be exhausted!! Praying for strength and healing for all you!!

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