As I lay in my bed this morning I couldn't help but feel guilty for enjoying the freedom of being home while Emily is still in the hospital room. It is hard to be in the same room day in, day out. Matt and I laughed when he called and said he was"going crazy" in the room all day...my exact feelings! He said he was feeling sorry for himself for a moment until he remembered that I do this all week long...and then he thought of our real hero, Emily, who can't even take a break to walk down the hall or go outside and feel the sunshine on her face. Emily is being so brave during all this. Every day she sees people come and go while she stays, waiting to get well enough to go home herself!
She cried as we left her tonight; it broke our hearts to say goodbye, we promised to give her pet dog Leo a hug for her.
The day of transplant is called "Day 0" so, today is Day 1. According to the Doctors, the first 100 days are the most critical. These are the days when Emily will start to engraft and create her own bone marrow to carry her throughout her life. They are critical because of high risk of infection and of Graft vs. Host (GVH) -this is when Jacs immune system will start to attack Emily because they are in foreign territory! This most likely will happen but we are praying it will stay under control. GVH can attack the liver, kidneys and other vital organs.
We will be in the hospital till Emily has engrafted (meaning she is taking Jacqueline's bone marrow as her own). when her ANC (Nutrifil count) is at 500 she will be able to come home and finish the healing process there. Emily has a calendar on her door where people can make their best guess as to when she will show engraftment. This usually takes place between days 18-25. As we all know, Emily is not usual in any way, so she may surprise us all!
If any of you would like to include your guess as to which day she'll engraft feel free to add your comment and we'll add it to the calendar.
Today was very uneventful. She spent all day with Dad coloring and making crafts. She is more red than usual from all the red blood cells she received and she is getting the "moon face" that comes from the steroids.
I changed the dressing on her central line which was a great accomplishment! It is much easier now than when she was a baby and we had to pin her arms behind her back to do it.
It is getting harder to leave her because she wants to be home so much. Grandma Whiting came to spend the night with her and Sunday as well. This is a blessing for the rest of us to attend church together and create a sense of normalcy for Jacqueline and Thomas (mom and dad too!).
We don't know what we would do without such a strong support system. Many of you who are reading this are part of that support system for us. Thank you!
- Jill
5 comments:
Jill, Can Emily have visitors other than family?
Also, Ryan started to show signs of engraftment at day 15. My vote is for day 15...a lucky number
Primary was so fun today! We sang the chemo song, which she had forgotten and we sang the "rock and roll" version of Give Said the Little Stream for grandma and Sister Spencer. Emily was an awesome singer today! You get two beads today Emily! She wasn't eating anything so I told her that my guitar wouldn't work until she took a bite. It's amazing how guitars work when kids eat a little! We sang the new song we learned in Singing Time today. Emily already knew it. We told her nurse he had to sing with us, but he didn't know any of the songs we were singing. He gave us a standing ovation for our songs, though (OK he was already standing, but we take what we can get) LOL We had a lovely lesson about being a good example and letting our light so shine. (Matt. 5:14-16) She colored a beautiful picture of her candle and we hung it on the wall. I told her she was already being a good example for how brave she was and how everyone looked up to her for her bravery. She said she could be a good example by being respectful to others. Good job Em!
We ended the lesson by Emily showing me the smile that would light up a room! Awesome!
She wondered if any of her class mates forgot her. I said, "Are you kidding! We sang a special song for you in Primary and Cambry and Kaleb wanted to come with me to see you today!" Before we left we surprised her with a huge stack of cards made by the Primary kids during their activity they did on Saturday. We read some of the cards together, then we let Emily and grandma spend time together enjoying the cards. So many of the cards express love for Emily. She especially loved the card from Kaleb. You should have seen her face lite up when she recognized his drawing! I think that really made her day!
Emily, you are my sunshine, my only sunshine, you make me happy, when skies are gray. You'll never know, dear, how much I love you!
Me and Jesus love you very, very much! See you next week!
Love,
Sister Holladay
We are thinking of Emily and praying for all of you Heaps family. You are such an inspiration to us all.
Love,
The Mikkelsons
Jill, I am so glad that you are able to keep us all up to date with the blog. We all run to find out how the day has gone. We are anxious to see Emily again!
I am so thankful today as I read this blog that Emily has a wonderful Primary teacher that gos beyond in magnifying her calling and does it not just because it is her calling, but litterally because hse loves Emily. That is what this life is all about. Thank you Sister Holladay for your great example to all of us! I want you to be my primary teacher!
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