Based on the number of supportive messages we got yesterday, I know you are all eagerly awaiting an update.

We arrived at the Dana Farber Jimmy Fund Clinic for lab draws and "here's what's happening" meetings. We sucessfully ordered Grace some food, and then we had to pop across the street for an audiology appointment. The audiologist had wanted to retest her right ear because of fluid, but there wasn't enough time for the fluid to drain, so the results were exactly the same (left ear fine, even though there is fluid, right ear slight hearing loss because of fluid.) She did not keep us long and will see Grace again in about 6 months.

Then back over to the Jimmy Fund clinic, and waited a long time. Jon got a message from some Hillsboro friends who saw us at the elvators in the morning, and so he spent a good time there with them, helping them interpret and understand the nurses' explanations of the chemo the husband was getting.

A nurse calle for a patient named Jeremiah, and Grace looked up and said, "My-miah!" So I had to explain that our Jeremiah was still at home. But that triggered her to ask about Faith, and so I did a video call to home and Faith, Joy, and Jonathan were able to join.

Grace got her final pre-transplant medical evaluation and was cleared for transplant. Then we waited a lot more for her hospital room to be available and cleaned. Just as Jon gave up waiting and decided to go get us settled in the apartment, our nurse coordinator called to say the room was ready, so we headed to Children's and he dropped me, Grace, and the hospital bags off at the front and went to re-park. Ginny brought us up to 6 West, the pediatric stem cell transplant wing.

Each entrance to the wing has air-locked double doors, like going into space. This is to help keep the wing itself protected from the outside so that the patients can freely move about within the wing.

Grace's room is much nicer than we were led to expect. Even Ginny was impressed that we got a nice room. 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.

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.

We got a tour of the wing, met the nurses and helpers, got settled. Turns out I mixed up some packing, and most of my clothes were in the "apartment" bag instead of the "hospital" bag but at least I have fresh
underwear and socks!

Jon ordered us a late dinner, which was good. Then he headed off to get settled in the apartment.

Grace got some pre-chemo meds - anti-seizure, anti-nausea, antibiotics - and she fell asleep in my arms as I was sitting on the recliner. She easily transitioned to her crib and she has been sleeping soundly since.

I slept very well - best so far hospital night! I noticed a few times when the nurses came in, but mostly ingored them. There is a ventilation fan in the room that is always on and provides white noise, but it is the
right kind - masking random noises but not bothersome.

I woke up ready to get up at 6, and just then the nurse came in all gowned up. Time for chemo. Grace is still sleeping unceremoniously as she receives her first dose of the tough stuff.

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 Heather Daley on January 31, 2024, 6:43 am | Read 108 times
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Comments

Hugs and lots of love to all of you!

Posted by Nancy on January 31, 2024, 7:42 am

Jon, this is Linda Ellison, a longtime family friend. I just read an update on Linda's blog. Your family's faith is wonderfully and powerfully inspiring. My thoughts and prayers are with little Grace, and all of you.

Posted by Friend Linda on January 31, 2024, 9:06 am

Sending love and prayers. I'm so glad you got a nicer room than expected, and a good recliner is essential for those longer stays! Especially when you're pregnant! Frustrated with you about the crib (I have lost that battle, too) but it's encouraging that she transferred easily.

Posted by serina on January 31, 2024, 9:29 am

We're cheering for Grace and all of you. She's been in our nightly prayers. p

Posted by Susan and Alan Davis on January 31, 2024, 10:47 am

Thinking of you all and sending you so much strength and love as you go through this journey as a family! Please reach out if you need anything, And take care of yourselves as well as your sweet girl! Heather, I know we have never personally met, but know I am certainly thinking of you and your mama super powers!!

Posted by Tina on January 31, 2024, 10:44 pm

Praying for you guys. Lots of love.

Posted by Heidi Johnson on February 1, 2024, 7:57 am
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