Daley Ponderings

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.

The rest of the world does not stop just because our child has leukemia. W-2 forms must be filed. I had not figured out how to do it before, and Wednesday was the deadline, so Jon did it last night. I'm so glad I have him, for so many reasons! Speaking of that, our nurse coordinator made a point of emphasising to me that I should take breaks to take care of myself and that Dad will be fine to take care of Grace But really, she didn't need to tel me. He is such a good Dad; he fills needs in our kids, and especailly Grace right now, that I cannot fill. (See nigthttime playtime below.)

We tried to play our Escape the Crate for a date night, but there were too many interruptions and then it was too late. But we got the introduction done.

I said goodbye and goodnight and then successfully walked to our apartment, pickng up a package from an Amazon locker on the way. The building has recently been redone, and the apartment is really nice.

I explored around a bit and then went to bed.

Jon and Grace had a super fun time together when she got unhooked from her lines. They ran around and jumped from bed to bed to chair, and jumped up to touch the ceiling, and generally had a lovely physically-moving time. They also read from her sign language book and she copied him verbally and attempted the signs for all the letters of the alphabet.

That night did not go as well as the first, sleep-wise, since there was chemo at midnight and all the other stuff that goes with it. At one point, Grace woke up enough to want to play.

I did not sleep the best, either, because the mattress was strange. Very firm, but then it was some kind of memory foam that did sink down eventually so that it was hard to move. But in the morning I remade the
bed with a foldable mattress that was in the closet and I'm hoping that will be better for the future.

The walk back to the hospital was probably less safe than the previous night, because - Boston traffic!! Ooh, can I tell I'm not a big city girl. Diligently, I press the walk buttons, and then watch the other pedestrians just walk across whenever. Then my walk light turns white and I have to wait for six red-light-running cars to finish getting out of the crosswalk becfore I can go. And that was just one intersection! But one of the other intersections had a crossing guard, so that was nice. Especially since I had to cross that one three times because Jon called me to say he was missing clothes as well. Apparently, we did not repack the blue bag after the last overnight.

It was a crisp day, not too cold, though, and generally pleasant walking. I found myself smiling. Then I found myself laughing at my non-city-ness. People look at you a little funny (if they look at you at all) when you try to smile at them walking by. Then I found a lump in my throat as I thought about it being Day -7, only one week until transplant, and the whole reason I'm here is beacuse my little sweet, happy, smart girl has cancer.

I stopped by the Jimmy Fund Clinic to borrow some books from Grace, and I navigated all the hallways and elevators correctly!

I was very happy to see Grace sitting on Jon's lap eating breakfast, her usual cheery self. They had told us she couldn't eat or drink past 8 beacuse of an ultrasound at noon, but that got pushed back to 1, so she squeaked in a breakfast before 9.

She is active enough that she has started tangling and twisting her lines, and at one point the machine beeped, "occlusion - patient side" - there was a kink in her line.

We had a video chat with some siblings. I played online board games with some of the kids. Another physical therapist came and brought a play mat for the floor. I would call it a small gymnastics mat, but it is big for a playmat and fills most of the available floor. That is a nice thing to have.

Grace started getting sleepy and sad, and at one point brought me over to the fridge. Ah yes, lunch time, but we cannot eat. So that was trouble for an hour, but now she and Jon are down at the ultrasound and she'll be allowed to eat as soon as she gets back. We have a chicken parm sandwich all ready for her when the time comes. (:

The doctors are very happy with her progress so far.

A chaplain stopped by to chat and she will come by on transplant day (if not sooner) to pray with us as the marrow goes in. (As long as it's not too late in the day, since she works regular hours.)

Thank you all again; we are being sustained, and Grace is holding strong. Keep it up!

Specific requests for now is that Grace's cultures come back negative so she will be allowed out of the room to walk and play. And that Faith will be protected from sickness this week as she also prepares for her big day.

Lots of love to you all.