Day +5 - Downton Abbey Anyone?

Some improvements this afternoon!  Took a shower, sat in the chair for 20 minutes, ate vanilla pudding and an orange popsicle, watched Downton Abbey.  Nurse Emily drew us a diagram of the days and the blood counts and approximately when we should start seeing improvements--my mom is definitely still in the trough of the diagram but this afternoon was good.

One thing that we have all commented on about City of Hope (aside from the quality of care), is how literally everything is named after someone.  Even the elevators and the paths outside! (as Eoin put it on Instagram, #modonorsmoproblems)

One or two people have expressed curiosity about Kofi's whereabouts.  He's been a bit of a vagabond recently with stops at our house and David and Liz's (thank you!) and is currently residing with Bridget, Joe & Olive (and Charlie, Apple, and two other cats . . . I can't remember their names even though we just talked about this the other day).  I think it's safe to say that no one is as delighted with his presence as Olive--playing peekaboo, wearing his leash, and imitating his whining (photo & video credits to Bridget).

And, not to be outdone, I'll close with the obligatory Una pics (outfit credit to Uncle Eoin).

Day +4

We are into the thick of things here at City of Hope.  Nurse Angela says that these few days are probably going to be the worst in terms of how my mom is feeling but that everything is proceeding as they expected--including how she feels right now. The brain of the operation:

It is encouraging when you come to this wing of the hospital to see patients up and about, walking in the halls--it's somewhere out there in the future for my mom.  Another area where patients can eventually hang out with their families is this atrium just outside of the elevators.  Such a gorgeous view . . . so different from the street level view.  (Did Frank mention in his post that the street signs in Duarte are all in a Celtic script.  So bizarre and seemingly out of place.  Perhaps a sign that my mom was meant to be here?).

In between spending time at the hospital with my mom, Ainate has been meeting up with friends and family who live in the area.  Great change of pace for both her and Una.

Friday:  Melissa (our friend from SF/NYC who's just returned from a year traveling abroad.

Saturday:  Lily (Ainate's cousin).  First time meeting Una!

Sunday:  Charlene (and son Max) and Leah.  Ainate's friends from SF State.

Day +3 - Nora takes over

Before he left, Eoin said to me, "You're not going to like it, but you need to post to the blog every day."  He even told Ainate to remind me and put it on his list of things for me to do each day (more on the list below).  Alas, I'm no Frank, and Eoin was right to preemptively berate me.  When my mom first started this blog I wasn't super into it, but like many of my mom's ideas, I've come to see--weeks, months, sometimes years later--the wisdom in it (I'm guessing this is a mother/daughter thing and not just a Sile-ism).  I've noticed from the comments, emails, texts, and Facebook posts that people are glad to have the blog and to be able to track the progress from afar.  So, here I am.

Also on the aforementioned list (in addition to "fluff pillows" and "turn page in Una book on display"), was an edict to read aloud communications from friends and family.  Yesterday she received FIVE cards in the mail (Nurse Claudia said it was the most she'd seen arrive in one day), and today during a period of relative good feelings we read numerous emails and took in some pictures sent via email and text.  My mom takes great joy in hearing from each of you and all of you missives--no matter how long/short or with picture or without--are much appreciated.

Medically speaking, today was not much different than the last few--feeling crummy with intermittent periods of alertness.  She did manage to rally for a shower and commented that "a clean body and clean clothes always make you feel a little better."  Platelets were down to 14K today.  Like everything else thus far, the drop after the initial post transplant surge is normal.  However, below 15K requires an infusion and that happened this afternoon.  The on-call doctor today said that she expected it to be another week or ten days before my mom turns a corner on the way she feels (this doctor has apparently been at COH for many years and remembers the famous Dr. Cecchi from his time here!).

Finally, I did hear through the grapevine some jokes about Una pictures taking over the blog . . . unlikely to change while I'm in charge.

(Outfit credit goes to Janice!  Thunder thighs courtesy of those good Yiaueki genes!)

Day +2

‘Donor’ Frank here. Tomorrow, I head away in my rented car from City of Hope and Duarte,  driving south and then a bit west towards the centre and west central Los Angeles;  the “there’s no there there” comment by Virginia Woolf about Oakland seems to apply even more so to LA.

The City of Hope does not allow babies or dogs – but no monument on the campus to WC Fields (“Anyone who hates children and dogs can’t be all bad”); it’s because they carry more infectious germs than the rest of us. So it was great to see Una briefly this evening – apart from her considerable charms, she has great scarcity value (I know, I know, econo-speak at its worst); she is accompanied by her parents Nora and Ainate – all three arrived yesterday evening, comprising a changing of the guard, as Eoin headed back north.

The post-donation feeling is odd. Beforehand, I was extra careful crossing streets and driving, knowing that if anything went awry, friends would be saying “the feckin’ egit couldn’t even keep himself alive for a few days to do the donation.” Now that no bus – and they are few and far between in these parts – or other mishap has done me in, do I continue with my super caution, and if not, can I recover to what is ‘normal’?

I motor into the highways of LA with some trepidation – I miss Janet, navigator extraordinaire -  but I am armed with the best that Google maps has to offer in getting me to my destinations – hotel check in at La Quinta Inn and Suites, car drop off National Car Hire, (9020 Aviation Blvd, Inglewood) and then onto Napa Valley Grille, Westwood, Glendon Avenue to lunch with Matt Khan (UCLA) and his student Cong Sun, back to hotel to be picked up by UCD grad Terry McCarthy and his wife Jennifer, and we motor to dine 35 miles south at Huntington Beach with Finbar Hill (Irish Consul General)

This evening I took over from Ainate on ‘Sile watch’; she is doing well in the sense that Dr. Nakamura says what is happening is what is expected to happen. She eats very little, but gets her nutrients intravenously, feels cheerful at times, but needs lots of sleep; her main affliction is nausea, which comes from time to time and has not yet yielded fully to variously iterated medications. A main job for the minder is to get the nurse to come when equipment beeps – which it does relatively frequently – usually means that an IV line is clogging. This is happening as I write….Love to all

F.

Side note from Nora:  when we went to say "goodbye" to Frank, Úna couldn't stop staring in the mirror.  These pictures were the best we could do!)

Day +1

What fun to be able to use the "+" symbol to indicate the day!  A quick update from today...

The rest of yesterday passed without any drama.  Dr. Nakamura told us that she would be exhausted - I didn't think it was possible for her to be more wiped out than she had from the chemo, but that does in fact seem to be the case.  She's also fairly nauseas and overall just feeling crappy.  But the good news is that this is all to be expected, and at the very least the nausea will get better in the next few days.

I Nurse Ratched-ed her tonight and made her sit up for 20 minutes, per the physical therapist's recommendation.  We started a movie but the TV has a fun habit of turning off every 2 minutes, which shockingly made it hard to enjoy the movie.

One funny thing we noticed today was that Frank and my mom's platelets were the exact same yesterday - 67k.  For Frank this is a big dive due to his donation, and for mom this is a high number (due to receiving some in Frank's stem cells - so no cause for a big celebration yet).  I like to think there's something symbolic about their numbers lining up on Day 0 - Convery siblings united in more ways than one!

I'm driving back up to SF tomorrow and handing off caregiving duties to Nora, Ainate, and Una who arrived this evening.  Frank will be heading back to Ireland on Sunday - we will miss him tremendously.

Keep the card, notes, emails, etc., coming - each one brings a smile to her face.

Una excited for her first road trip! (she promptly pooped on this outfit and had to be changed)