Tuesday, April 21, 2015

One Year Ago, April 2014

April 21, 2014 

One year ago Grace received up to 10x the regular dose of chemo to combat her aggressive Leukemia. She was so weak that that she had to be carried, even to the bathroom. She stopped getting out of bed and soon she stopped playing all together, hardly even talking. Television became medicine to help the hours pass unnoticed when she wasn't sleeping.

She started to get shots in her legs every day to help her body produce white cells. She had nightmares about them and talked in her sleep about them when napping. According to one nurse the medicine inside the shots stung as well as the shot itself. In the photo above Grace is holding the Princess doll she got as a prize for her shot. We figured a daily $7 prize would be cheaper than long-term therapy for PTSD and it helped her to have something to look forward to, instead of dreading the shots. She was so determined to be brave when she got them, even though she cried and screamed.

She also had to get an IV in her hand in addition to the port because they couldn't run morphine and the IV nutrition in the same line (or something like that). If it wasn't midnight, it was near to it when they woke her up to get the IV placed in her hand. They work around the clock at the hospital. I took her to the bathroom right before and she came out chanting, "be brave, be strong." And she was brave, and very strong. 

I remember the doctors and nurses having to convince me to start her on morphine. It's just a word you never imagine for your child. Then I realized we had just spent the last week pumping her body full of poisonous chemo, so morphine really wasn't much worse. The morphine didn't cover all the pain, but it certainly helped, and I was very thankful for it.

Unfortunately the morphine causes constipation and the PEG chemo she had caused pancreatitis. Her counts dropped and she had blood transfusions often. The sores in her mouth allowed infection into her blood stream and she developed a staff infection. The Vancomyacin antibiotics used for the infection gave her "red man," which caused her to turn red and itch like crazy, so Grace was given Benadryl before each dose. Thank God for Benadryl because she slept for hours during the day allowing her body to heal and to be absent from the pain. 

I remember her oncologist coming into her room one morning to review her charts and to check up on her. I remember her saying, "Well, she has pancreatits, constipation, a staff infection, the flu, and severe mucositis, but overall she's doing pretty good." I looked at her in disbelief. I didn't realize that at the time that as long as you're not in PICU, you're doing pretty good. Staying out of PICU became my new definition of good.

During our stay we used what we called "mommy medicine." We found that if I was cuddling her, her pain became more manageable and her stress levels stayed down. So we cuddled day and night except for bathroom and food breaks. I sat with her in bed during the day and slept with her in bed through the night.  I also found I could silence the medicine alarms and page the nurse more easily from her bed. I could also help Grace go back to sleep quicker after her 3x a night blood pressure and temperature checks if I slept next to her.

Grace's mouth was covered in sores (similar to canker sores) and her mouth was beginning to swell. She started to eat only soft foods. Eventually she stopped eating and drinking. It was too painful. Her cheeks, the roof of her mouth and the top and bottom of her tongue were completely white from the sores, and that was only what we could see. By the end of the week her entire mucus tract (from her mouth through her GI tract) was covered in sores, which is called Mucositis. When her platelets were low her mouth would ooze blood through the sores until her mouth was a sticky, bloody mess. 

This is a journal entry from April 27, the day when she needed platelets so badly:

I memorized "Great is Thy Faithfulness," and today I was singing it in the hospital elevator when I went to get my coffee. "Morning by morning, new mercies I see. All I have needed, thy hands have provided. Great is Thy faithfulness, Lord unto me..." 

Last night, or rather at two in the morning today, Grace had to go potty...In the light of the bathroom I noticed her mouth was a bloody, gooey mess. I called in the nurse who called the doctor who ordered platelets for her. Within an hour or so she had a transfusion. ...

Yesterday I was cranky, lonely, bored, and tired. I was so ready to go home and be a family again. But when she needed the platelets all I could think was how grateful I was. All my anger and frustration melted, none of it mattered anymore. I am so grateful to the person who donated the platelets. And for the nurse who acted promptly. And for the doctor who was up all night so the order could go through. And the blood bank person who made sure it was a good match for Grace. I was overwhelmed with gratitude that all these people are protecting my daughter.

This morning God acted in His faithfulness to help Grace. He didn't look at my unfaithfulness, He worked off His own goodness and His promises to me and my family. I wish we weren't here. I wish Grace wasn't in constant pain. I wish a lot of things right now. But what matters is that she needs help and God has us in a place surrounded by people who are helping. His mercy is all we have needed, and He has certainly provided.

We lived in the hospital for three weeks that first round of chemo. Then we went home for the weekend to rest, then returned for another two weeks, and then three weeks again after that. Finally she had finished her "chemo-bombing" and was able to return to normal doses of chemo.

This year is so different. It's hard to revisit these memories as they are still very painful, and sometimes it revives fears of relapse, but I am always encouraged when I see that God was so present with us. His peace would cover my fear like a warm blanket on a shivering child. It was almost tangible some days. He provided strength and courage far beyond my capacity. I am so thankful to be able to look back a year later and see Grace is so much better, but I'm also grateful to look back and find Jesus in the hardest point of my life.

Dear Jesus,
Thank you for bringing us through last year. I pray we'd Grace would have to go through chemo again, but I know that you would be with us if she did. You would never leave us. Your mercies would sustain us and You would certainly provide your presence and peace.

Please help all of our friends who are there at the hospital today, or who are recovering at home. We pray for Bailey, Nati, Conner, Selah, Emi, Riley, Lilly, Kaitlin, Brandon, Hazel, Brooke, Bell, JoJo, Hannah, Valentina and all of the children at CHLA. Please help relieve their pain, their parent's anxieties, and heal their little bodies.

Thank you that your death on the cross has made the promise of heaven attainable to us, and that in heaven both cancer and death are conquered.

In Jesus' name we pray,


  1. Following from afar, I am grateful your path this year is easier. May Grace Ellen be well on day. Dhyan