The last long update ended February 3 in the evening. In the wee hours of February 4 (Sunday) she got a blood transfusion for her hemoglobin level, which was expected. (They’re killing off her bone marrow, so her own body is not making as much blood.)

Sunday morning, she got a dressing change. Jon and Nathaniel arrived from the apartment, but left soon after to visit a church that some Maranatha friends go to. They were gone most of the day because they took the opportunity to fellowship for a while with those friends and then ate a Chinese restaurant where Nathaniel ordered cold smoked fish, and mostly regretted it, primarily because the bones were left in.  Jon anticipated his not liking it and ordered a side of dumplings in addition to his choice (spicy garlic and spinach) and they both enjoyed those. 

In the meantime, Grace found a shopping cart in the playroom and put her Baby in it (facing forwards so she can see where she’s going!) and some play food. Since then, when she walks the halls, she pushes that cart along with her. She also painted more and played with clay. She had a great time with the PT who came and gave her a game of finding colored rings in the hallway.

A friend from Family Camp, whom we hadn’t seen in five years, lives in Boston, so she visited and prayed with us.

When Jon and Nathaniel got back, Jon found a couple of older kid games, and Nathaniel and I played the physical version of Sushi Go for the first time. (We had been introduced to it on Board Game Arena.) Nathaniel is not allowed in the 6 West playroom for the health of the transplant patients, but he is allowed in the 6 NE resource room. However, that was closed because it was Sunday.

Jon had some work that had to get done (his bosses and customers are all very understanding, but anyone who knows Jon knows that he can’t not do work!) so Nathaniel, Grace, and I spent a long time in the hallway, back and forth. Grace thought it was hilarious to run Nathaniel over with her little grocery cart, and he played right along. It was good for us all to hear Grace’s sweet little giggles.

Sunday night 8pm was the first dose of the second kind of chemo. I volunteered to stay at the hospital again because the nurses said they had to come in and check urine and diaper change. I slept fine.

Grace slept great again; she woke up sleepy but cheerful. She thought she was hungry, however, after we got out her snacks and drinks she just looked at them and then said to put them away. She gagged a bit at the smell of the dry erase markers (which we got low odor on purpose) and I freaked out and started moving things away from her and trying to figure out how I would catch any vomit without getting it on myself. She didn’t like it that I freaked out, so I calmed myself and saw that she would be ok. When breakfast came, she ate some, but mostly picked. At rounds, I told the doctors of her nausea and they offered to give her another anti-nausea med, and to switch as many oral meds to IV as they could, which I accepted. I gave her the oral meds one at a time, but she did not like it. We went for a walk and she did some painting, but she was obviously not feeling herself.

I tried playing Azul with the kids at home, but we were interrupted by PT. This session was not as good as the hallway game. Then Jon and Nathaniel came in from the apartment, and Jon took Nathaniel to the 6NE resource center and got him a book of paper puzzles/games. A resource person had given us some gift certificates to the nearby food courts, so Nathaniel and I went down and had lunch there. Grace picked at her lunch.

Once Jon was there, I realized that the time alone at the hospital with Grace had been harder on me than I thought; it just bubbled up into tears and he cuddled with me. All four of us had a nap, and that was good.

Daddy picked a good dinner, and she ate a lot. The downfall came when he gave her the evening oral med, and she threw up all her big dinner.

Nathaniel and I had to leave for bedtime. He wanted to drive, but I needed the walk. He kept himself from boredom by counting how many steps I took per sidewalk square vs. how many he took, and various games like that. Walking a mile at pregnancy-belly pace is not his usual! We slept fine there and made some eggs for breakfast. He packed up all his stuff and then we headed out. There is a playground right across the street from the apartment, so he spent a while there. It has a big, tall slide. Then we headed back to the hospital. This time, we walked around to the entrance of Children’s instead of going through Dana Farber (which requires stopping by the screening desk and wearing masks.) It’s not really that much longer, but it is colder because it’s outside.

I heard from Jon that, even though he waited an hour after breakfast, Grace still threw up after getting the oral med.

When we got there, Jon and Grace were in the playroom stringing beads on a bracelet, and she was looking good. We spent a pretty short time with them and then - time to head home! My only problem was getting out of the parking garage. There is a steep hill right at the exit where you have to pay, and I revved the engine and squealed the tires in my attempt not to roll down into the person behind me. I did it twice, because of the line of cars and the pay place, and the attendant at the top made “calm down” signs to me, so I opened my window and explained, “I just have a hard time with the stick!” He nodded in understanding. I had no trouble with the stick shift all the rest of the drive home. Even Boston traffic was more mild that usual. Nathaniel talked the entire way home. (:

So good to be home and see the other kids. (Noah is on his birthday adventure with Grammy and Papa, so I’m missing him.) We cuddled, and talked, and went down to the print shop to pick up the Team Victory shirts! We ordered out from Main Street Grill, and then the boys went to Concord, leaving us to a girls night to ourselves. The boys got ice skates and went to orchestra practice. We girls talked and cuddled and packed for Faith’s Big Day.

We had a meeting with her team (by zoom and in person) and mostly discussed the nausea and her diaper rash, which is getting worse again. But overall, they are very pleased that she’s doing so well.

Jon reported that by giving Grace the oral meds in small doses spaced out she avoided throwing up.

Last night was Grace’s third and last kind of chemo. Today (Day -1!!) is a resting day. (From chemo, that is. She still has billions of other meds, including her once-a-week Wednesday oral med that she complained about last week.)

This morning, I am trying to get some practical stuff done before others wake up. It is crazy (but maybe not really) how the details get muddled. The order of the events described above may not be exactly as I wrote them!

Soon, Faith and I will head back to Boston, where she will have her last pre-transplant blood draw. The time is at hand!

Please pray that Grace will tolerate her oral medicine; that Faith’s surgery will be successful and without complications; that the chemo has done its job in eliminating Grace’s own bone marrow; that infections will stay away; that Faith’s marrow will grow strong in Grace’s body and be her cure!

Thank you all so very much for your prayers and support. It’s a hard journey, but we are so blessed.

Posted by Heather Daley on February 7, 2024, 7:51 am | Read 33 times
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Love and prayers!!! d

Posted by Heidi Johnson on February 7, 2024, 6:54 pm
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