Daley Ponderings

Noah did a good job driving in terrible Boston traffic, but it meant we got home late and I didn't get to talk to Jon for very long last night. The ultrasound revealed that Grace definitely has problems with her liver; she has also been in more pain. By the time I talked to them, she was content sitting and reading books. But her liver definitely could use your prayer. Also, since now that I'm home Jon is at the hospital by himself, he can use your extra prayers. Thank you.

The last several days have been back and forth. I’ve started several posts in my head, and then they end up changing. The weekend doctors cancelled the stool studies, then the attending on Monday re-ordered them. Jon had some very frustrating conversations with the doctor, but an encouraging one with the social worker. Also, conversations with nurses and clinical assistants about ratios of pee and poop in potties and diapers. But before they actually put her on precautions, Grace got some time in the morning in the playroom with PT, who was happy with her strength for squatting and getting up and down and reaching.

I also forgot to post this picture of her walking with her shopping cart, from a couple of days ago.

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Once again, it was good for me to visit home. This time, I brought Joy back with me. We left later than I meant to, for various reasons (one being the second batch of Victory tshirts came in!) so we had a bit more traffic in Boston than I have yet driven in. It was stressful for Joy, I think, but I am getting used to it.

Grace was so happy to see Joy! They have a secret handshake that in the past Grace has sometimes rather reluctantly done. But this time, she volunteered all the pieces, including the last one, and that made Joy happy, too.

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Please pray for Grace's intestines to heal. The doctor is concerned about her continued diarrhea, and so stopped all formula feeds for a few days. She's getting all her nutrition through IV. She will eat bites of things here and there, but is not really taking things by mouth either. This is expected, but the sooner we can get her back to digesting the normal way, the better.

We are starting to meet other parents on the floor. Several other kids here are not doing as well as Grace, so if you think of it you can pray for them too.

Joy had a good visit. Hopefully I'll get to pictures and a more detailed update soon.

Grace had a great day today. She went out for a walk, wasn't even too upset when Heather left for Hillsboro, waved at everyone as we walked down the hallway.  (She was especially adorable today because she brought a toy vacuum cleaner instead of her normal shopping cart, which is useful for stability as well as bringing things everywhere).  Various staff members thanked her for cleaning up the hallway)

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As of April 8th, we will be home and the information in this post is out of date.

Click here (or see below) for instructions to visit or send us mail.

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Jon wrote today:

When I said it was a "bad day" the other day, a nurse corrected me and said "good moments and bad moments".

This morning was good and she played in the playroom for quite a while. She did throw up after eating. But has continued to ask for food, and hasn't thrown up yet...

She looks brighter than she has been the last few days.  Her white blood cell count has gone up from zero, though the doctor stopped by to chat since we didn't see her this morning.  She said it is common for the white blood cell counts to "flicker" as best as I can figure out, they measure the non-active white blood cells and so if they are out working on healing some area of the body, they don't get counted, so if those 30 get assigned to go work tomorrow, her count could go "down" but that isn't mean anything bad.

So, in short, it is possible this is a turnaround, but it might go up and down for a little while still.

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Grace had a fever overnight so Saturday morning they gave her Tylenol. She seemed a bit better, happier. She even gave me some smiles.

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Grace has been in pain and sleeping a lot. These are the hardest days when her counts are low before Faith's cells take hold.

I've been home and that's been good. It's hard to be away from Grace when she's suffering, but I know she's in good hands with Daddy. And it's been good to be with the other kids.

Pray for engraftment soon and endurance for Grace in the meantime.

I walked home late Monday night, because there was supposed to be this big snowstorm. Jeremiah was already asleep, sprawled all over the bed. In the morning, it was only raining Jeremiah and I had leftover pizza for breakfast, and we walked to the hospital in the rain.

The nurses and child life had gotten Jeremiah a poster and some balloons, so that was fun. We also had some birthday stuff in a package from a friend.

He played with Grace in the hallway until somebody told him he wasn't allowed to be in the hallway. Grace enjoyed being out there again.

However, then it was time to put in the NG tube. As per usual, she did a great job. But she really doesn't like having it in. Her nose runs, and it moves when she swallows. She threw up once, the first time she ate something with it in. But after that she was able to eat.

Her temperature is slightly elevated, but not quite a fever level. Her blood pressure is also slightly elevated, and overnight her magnesium levels were low. She slept all the way through like usual, but now she's just cuddling in my lap. She is not feeling very well, not feeling like herself.

Jon and Jeremiah are planning a surprise for me that they're going to bring over from the apartment. Then Jeremiah and I will go home. Hopefully I'll be able to get a nap, since I woke up to lots of beeping throughout the night.

Day +4

Grace has not thrown up at all today! She even had an episode where she ate too much macaroni at once, and was able to spit it out without actually throwing up.

She does have evidence of the mucositis in her intestines, and a little bit in her mouth, but that part is doing pretty well. They are planning on putting in an NG tube tomorrow, so that she can start getting good nutrition. She will be able to eat even with it in, so she can try as much as she wants. Then they'll be able to give her meds through the NG tube, and any extra nutrition that she can't get in by mouth. They like to put in the NG tube after it's evident that she's not getting enough nutrition but before the mucositis is so bad that it hurts too much to put the tube in.

Yesterday I was feeling like, "Well, that was an adventure. Now can we go home?"

It was hard for me to see Jon for a little bit yesterday, and then have to say goodbye again. But he and Jeremiah are coming tonight, so I will see them tomorrow on Jeremiah's birthday!

I'm working on a plan for self-care. It does really have to be deliberate, because it's impossible to get it in if you don't think about it. I visited the roof garden last night, and that's nice. My plan is, the next time a volunteer comes in and says would you like me to watch Grace so you can go do something, I'm going to go up to the roof garden.

Days +2 and +3 have been full of desire for eating but not the ability to keep it down. Also, bare bottom and oxygen blowing has been keeping the diaper rash from getting worse, and it might even be a bit better.  She has lots of diarrhea.  She has been sleeping a lot. She had a dressing change today and there is a bit of irritation where the tube leaves the dressing.  The nurse moved the tube for the new dressing, and hopefully that will heal up.

Faith is steadily improving and is planning on going home with Jon tonight.  I'm pretty tired.  There was an alley party last night, which thankfully did not wake Faith.  But it did wake me. Today is Jon's birthday.  This year, our February birthdays will be quite different from normal. He was able to go to Park Street Church this morning, which was good. 

Faith steadily improved throughout the day as she slept through most of it and has now transferred to our Boston apartment. She got a present (mailed to Grace at the hospital) so that was fun.

Grace's diaper rash did not get worse overnight, and without oral meds, she ate well and did not throw up. She was in a good mood most of the day. She was also extra pink with Faith's cells flowing through her.

She has started getting some sores on her tongue and the inside of her lips. She also has diarrhea.

I was thankful for her two hour nap because I'm very tired. It was good to get a nap. Jon came in and out, being with me and Grace, or Faith, or doing laundry. I visited Faith's room for a short time before dinner.

I zoomed with the home kids and got one online game in.

Now I'm at the apartment with Faith and Jon's at the hospital with Grace.

Goodnight, faithful friends.

My place beside you,

My blood for yours,

Till the Green Ember rises,

Or the end of the world!

One of our favorite series is The Green Ember, by S. D. Smith. Rabbits with swords, new stories with old soul, heroes and villains, joy and grief, hope and longing, with love and good triumphing in the end.

The above verses are the Oath of the rabbit kingdom. Faith was wearing her Oath t-shirt one day and I suddenly realized that it now has a new meaning for our family - my blood for yours  - Faith's blood will literally be for Grace's. I was so excited about this revelation that I emailed S. D. Smith and he was touched by our story and especially by Faith's heroism and sacrifice. He sent us more shirts, including one for Grace, and we had a super fun time Zooming with him in January.

Faith and Grace are wearing their matching Oath shirts today for the Transfer of Cells.

After that picture, Jon took Faith back to her room to rest, and she slept until transplant time. Jon didn't really want to wake her up, but he knew she would want him to.

Grace had fallen asleep, too, and when Jon brought Faith back, he noticed that Grace really looked like Isaac and that was hard.

The hospital chaplain came to pray with us and she designed a blessing service with a bulletin and everything. It was sweet. She invited the music therapist to come, but she didn't know the songs Jon picked, so he played her guitar. Faith got to push the button to start her cells flowing into Grace. Faith, Jon, and I sang In Christ Alone. I think our nurse cried. I definitely did.

The quantity of marrow that Faith donated was impressive. It was amazing watching it flow through the tubes to go into Grace.

Faith was ready to get back to her room and rest and get pain medicine, so Jon took her down there in her wheelchair.

I wanted to move to a more comfortable chair, but that activity woke Grace and she woke up very upset. So upset that she was not able to tell us what was wrong. They called in extra doctors and nurses, but all her vitals were good (slightly elevated heart rate from yelling.) But they all knew something was up because none of them had ever heard Grace yell about anything before. So one doctor's guess was a reaction to the Benadryl. We were able to calm her down with some songs (the music therapist had come back to bring Jon a guitar to keep in the room.) Then she had some gas and I realized she needed a change. That then made it apparent that it was her diaper rash that was the problem all along. She must have gone in her diaper before falling asleep earlier, and we didn't catch it. So her rash is much worse, but they called in the wound doctor, who gave us special wound healing cleanser to wipe with and another type of cream to put on thickly. She has been much more like herself since then.

Faith is doing pretty well, but in pain. Morphine didn't do anything for the pain and it stung as it went through the IV, so Faith didn't want to ask for more. Her nurse eventually got a call back from the doctor who was able to authorize oral oxycodone, and she is feeling better now. They watched How To Train Your Dragon and ate dinner. She is now able to move to the bathroom on her own, and Grace's nurse advised Faith to "take a lap" so we will see if she is up for that.

God has been so good to us. Your prayers and love are sustaining our family. Grace has enjoyed the stickers coming in the mail. The nurses and doctors are exclaiming how well Grace is doing. Keep it up!

The next couple of weeks are anticipated to be the hardest, with chemo side effects catching up to Grace and a zero immune system as Faith's cells take hold and grow. (Also, a few birthdays at home celebrated without Grace and one or both parents.)

After I wrote this, but before I published it, Grace threw up her dinner all over her front.  This was right after a diaper change, she was standing up to head back to the bed.  It got on her lines, so even though she just got new lines and caps today, the nurse gave her another new set.  She also has been having a lot of diarrhea this evening.  She is now zonked out (reading a book while waiting for me to get ready for bed) and about to be transferred to her crib.

I'll leave you with Joy's modification of the Oath:

My place beside you,

My blood for yours,

Till the True King rises,

And the end of the world!

Faith's surgery went well. Her vitals stayed stable the whole time and they are all happy with how it went. She said coming out of anesthesia was just like waking up in the morning only she couldn't lift her head at first. Jon went down to be with her and I stayed with Grace. Grace threw up her breakfast with the medicine again this morning, and I asked the doctors at rounds if we could skip it in the interest of her getting nutrition. They said yes! They anticipate that in a few days, she will not feel much like eating and then they'll put in an NG tube and then the
meds can be given that way. But for now, she's still eating well, and that's worth skipping the yucky medicine. (There are two others she is getting IV that are for helping the same issue.)

Faith came up to Grace's room for an hour or so, and now she is back down to hers to rest. So many emotions upon seeing my brave donor girl. Happy
to see her, proud of her sacrifice, relief that she is well, so, so thankful. We have a couple more hours to wait as the lab processes her cells. (One thing they need to do is related to the fact that the girls have different blood types. I learned that today. I knew they had different types - I just learned that they can do something about it in the cell processing.)

Grace gets preparation medicine and they will put all the vitals leads on her and monitor her very closely as she's getting the cells.

Now is resting time. Stay tuned!