After still more testing, Grace was officially cleared for transplant yesterday. That is a good thing, even though it does feel rather like telling a Navy pilot, "You're cleared for take-off on the most dangerous mission of your life."

She was admitted to Boston Children's Hospital, and her room is a tangible answer to your prayers and hopes, much better than they had been led to believe, and the nurse made it even nicer.

The parent bed is big and serves as a nice couch for daytime. There is a huge windowsill. The nurse snagged us a recliner chair to replace the regular chair. Four small drawers under the parent bed, a cabinet/wardrobe, a little fridge. Reasonable sized bathroom with shower.

Children are so adaptable. I was afraid that being required to sleep in a cage (crib) would be adding unnecessary insult to injury for someone who has never been confined (except in her car seat), but so far she thinks it's fun. The parent bed provides a good place to play when not sleeping, and the crib provides a safe place for her during the times Heather and Jon must have their attention elsewhere. Hospitals are not the best places for children to be free-range!

We lost the battle about Grace having to sleep in a crib, but it is a fancy hospital bed crib, and she thinks it's funny for me to open the little end door and then she closes it, over and over. She spent most of her awake time out of it.

At six o'clock this morning, Grace slept peacefully through her first dose of the hard chemo. The battle begins.

As Heather said in their own update post,

Lots of emotions yesterday, but I feel ready and supported. It is so very hard to think about the nature of leukemia and chemotherapy and side-effects and medicine. But it is so very good to have all the prayers and thoughts and practical support. God is our strength and very present help in times of trouble.

Posted by sursumcorda on Wednesday, January 31, 2024 at 7:43 am | Edit
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Oh my goodness...what this family is going through! Their faith is a wonderful and powerful inspiration! My thoughts and prayers are with little Grace, Heather, Jon,and the whole family.

Posted by Friend Linda on Wednesday, January 31, 2024 at 8:59 am

I was impressed with how far children's accommodations have come since my husband accompanied one of my sons for hernia surgery. Hats off to Boston Children's for doing what they can to ease an experience no one should ever have to endure.

Posted by Grace Kone on Thursday, February 01, 2024 at 11:52 am
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