Daley Ponderings

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!

Faith's surgery is scheduled for 7:30 this morning.  We don't know how long it will take for the lab to process her marrow and then get it to Grace yet.

Here are some pictures from yesterday.

I woke up at 6AM because it turns out that is when the hospital does weekly generator checks which involves the power going out, which shuts off the ventilation fan briefly and triggers these color changing lights (that we didn't know about previously, see below), and so the nurses run around to turn off the lights in everyone's rooms. Seems crazy to me that the test is scheduled like that. I have thought multiple times that Boston Children's Hospital should hire my company, Medallia for patient and employee surveys, because there are a handful of obvious things that all patients and employees know, but the people in charge must not, because they could save money, make the hospital a better place for employees and for patients and generally make things more efficient.

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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.)

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The first round of tshirt orders has come in!

Local people can come pick up anytime.  Please bring payment when you come if you haven't prepaid.  Noah will be mailing faraway people's shirts soon.

I'll update later with how much has been raised for David's House.  We haven't gotten all the payments in yet.

If you haven't ordered one and want to, just let us know what size and color you want!  (Details here.)

Grace is not feeling so great today. I approved for them to give her another anti-nausea med in the hope that she will feel like eating. She has mostly only nibbled so far today, though she did eat a reasonable amount of eggs.

She is painting right now, but definitely not her cheerful self.

The last post left you with Jon and Grace down in ultrasound. That procedure took two hours. They took hundreds of pictures - exploring all her internal organs. She does have vessel constriction in her liver, wgich is not unexpected with JMML. So since then, she has gotten another prophylactic med for that.

Jon and I finally finished chapter 1 of our Escape the Crate, which was fun. This context definitely requires us to do the untimed version.

After that, we played Board Game Arena with the kids at home and that was good. Then all of a sudden it was bedtime!

I spent that night (Thursday) at the apartment again and I slept much better on the different mattress. Jon, however, did not sleep well at all because of all the hospital things in the night.

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T-minus seven days and counting. Transplant Day is Day 0 and they count all other days from that.

Yesterday, I left off while Grace was still sleeping. She woke up slightly grumpy, but soon was fully awake and her normal self. Chemo every six hours, blood draws every half hour (!) plus other meds, and she was hooked up all day. (At the end, you'll get to read about the fun time she had with Daddy before bed when she was finally unhooked for a while.)

A physical therapist came in to play and assess her current levels of moblity. During that time, she twice fell over for no apparent reason.  Sometimes, her lines get in the way of walking and balance, but these two, she was just standing there and fell over like she had vertigo. The doctors did say that it would not be a surprising side effect to be dizzy. However, after those two episodes, it did not happen again. We do hover near, though, to catch if necessary. She also slipped in her "grippy" socks, which turned out to have the grips in the arch. But they got her a bigger size sock and the grips are more numerous and over the entire bottom of the foot.

She has a number of meds to take by mouth as well, which she has done fine. One yesterday (that turns out to be a once-a-week on Wednesdays) she actually reacted to with a yucky face and tongue out. So hopefully that will not give us trouble in the future.

She took a three and a half hour nap in the afternoon, hardly disturbed by vitals checks and med changes.
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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.
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Today is our last day all together as a family for a while. God blessed it by sending a beautiful six inches of snow that cancelled our outside activities for the day. We plan on spending it cuddling and playing games (and packing for Boston.)

Prayers for this week:

Praises:
We got a visiting nurse for Grace's dressing change instead of having to drive to Boston this weekend.
Snow Day!
Grace's bone marrow aspirate gave results that made the doctors happy (though I don't really understand the details.) The bottom line is that it means she is in a good position for transplant.

Requests:
That the chemo will do its job to wipe out Grace's bone marrow entirely while giving her minimal side effects.
That we will have good communication with the doctors and they will have good communication with each other.
That the other kids will be sustained and at peace while they have to be separated from their parents and sister.
Mental health for all of us as we deal with all the hard things surrounding these circumstances.

Thank you all so much for your support and prayers. We can feel it!

Joy has designed a tshirt for Grace's cancer journey.

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