Day +30: It's raining?!?

Greeted with torrential rain this morning as we went to navigate our way back to CoH for blood draw, infusion, appointment with NP Anna.  Good to see the rain, would've preferred that it wait until we were settled inside.  In any event, things we learned from NP Anna:

• Numbers continue to look really good.  If "the donor" hadn't grafted the numbers would be lower.
• She referred to "the donor" as if it were a separate entity inside of my mom.  
• The steroids she's on are to "calm the donor down."  If the donor gets too excited about it's new locale then GVHD is possible--which is what happened slightly in the gut a week or so ago.  
• When actual donors (like the person responsible) are from other countries, there's a whole process they have to go to in order to approve things (i.e. because Frank's from Ireland there was some question about Mad Cow disease.  Apparently each country has it's own set of questions that are asked).  
• As far as NP Anna knows, Frank is the oldest donor they've used.
• 72 was the age of the oldest transplant recipient.

I'm off tonight and am passing the torch to my dad . . . There are even rumors that the patient herself might make an appearance on the blog soon.  Stay tuned.

From Eoin this AM:

Day +29: New Realities

First, I'll answer Kyoko's question regarding the casitas.  They were fine . . . but the Marriott is better.  Way better.  More space, more color, more plush, more comfortable.  Case in point, the patient in repose:

From the caregiver standpoint, if yesterday was about pill organization, today was about diet dos and donts.  Most things are fine as long as you cook the hell out of them.  Organic is bad.  Processed is good.  Roasted nuts OK, raw nuts not OK.  Apple juice OK, grapefruit juice not OK.  Melted cheese OK, regular cheese not OK.  You get the point.  It's called a "low bacteria diet."  Grilled cheese with ham that's been fried up a bit OK; potato chips OK; apple OK as long as the skin has been washed with soap and water and it's consumed within an hour of starting it . . . Easy enough to remember, right?

In other news, no news is good news.  The day was passed in relative relaxation and comfort.  Back pain persists but stomach/intestinal issues are pretty much in check.  Few hours at CoH out patient clinic for an anti-fungal transfusion (which is every day for the next nine days), but the outing was smooth and uneventful.  All in all, we set a good precedent for this phase of things.

Una report from Eoin this morning:  "Gennet (nanny) arrived just in time.  I was having major issues getting the diaper on.  Una is very fidgety!"  I feel you.  We probably should have gone over the technique.  It's the fidgetyness plus those thighs!  

More from today:

Day +28: D Day!

Could there have been any other title to this post?  Momentous day all around.  Unsurprisingly, the whole process of leaving the hospital took quite a while but Ralph and I greatly appreciated the care and diligence of the CoH staff (especially the incomparable Nurse Barb--who, I posited, they put on all discharges because she is the best) in making sure that we felt somewhat secure in what we were doing because there is  . . . a lot.  More on that later.

One surprise to the day:  this quilt!  It was a discharge gift courtesy of a group of lawyers from a firm down here--Irell & Manella.  They're group is called Friendship Quilters and apparently they've been making quilts for CoH patients for the last ten years.  The generosity of strangers; people are amazing.

And while we might like to pretend that it was the machinations of the hospital that delayed our departure, we should probably also mention that we needed the time to pack up all of the stuff . . . . 

So, we've said "goodbye" to the masks (well, the visitors anyway; patient still has to wear one when she goes out) and to the incredible staff at City of Hope and "hello" to the Mariot Residence Inn and to pill boxes.

The next phase has begun!

(Update:  patient has insisted that I include an Una pic.  "People love those," she says.  Who am I to disagree?)  Selfie taken by Eoin this AM as he took one for the team and bridged the time between when Ainate left for work and when the nanny arrived--normally my job, thank you Eoin.  Taken prior to Una peeing on him.

Day +27: Discharge, Nora, Una!

Hello!  Nora here.  In for a quick few days to give Ralph a bit of a break and to check on the progress of things.  So much has changed and in such a positive direction!  I'm looking forward to seeing the patient for myself tomorrow morning when Ralph and I meet with Nurse Katie to go over the discharge details one last time.  As I've just arrived, I don't have much to share beyond how strange it is to return to a place as foreign as Monrovia/Duarte and the Mariot Residence Inn and yet have it all feel so familiar . . . no directions necessary as I navigated from the airport.  Weird.  Given my limited first hand knowledge of the matter at hand, I'll return to my favorite topic:  life with Una.  Here's what we've been up to:

Weekend in Forestville with Grim (we only crossed paths with Gralph for an hour or so).

Wearing the cutest hat ever.  It finally fits and she's been wearing it A LOT.

Drinking beers at Cato's with Bridget and Olive (and Joe, not pictured).

Visiting me at work one last time (Ainte and Una have been making weekly visits during Ainate's maternity leave).

Cooking all day Sunday in preparation for Ainate's return to work this week.

Chillin'.  Feeling good about being four months old.

Day +26: Living Like the Locals

Another good day for Sile's healing.  She is eating more and eating more different things.  Her system does not handle real meals yet and the dietician has recommended eating small amounts frequently.  Fortunately the food system at City of Hope is equipped to handle such requests since a patient can order any item from the menu at any point in the day and it arrives a half hour later with a knock on the door and a call of "Room service!".  I'm afraid Sile may miss this feature when she reaches discharge - still on track for Wednesday.

She is walking a bit more every day.  Her physical therapist today was a former swimmer from Cal State Northridge who had advice not only for improving her gait but also for getting her back into the water when she is ready.  The transplant has, of course, taken a lot out of her and it will take some time to build her stamina.  Nonetheless, we did make it to the "sky lounge" again for a viewing of the sunset.

The "bandita" look is a result of the mask that Sile is required to wear when she is out of the room.  Not yet clear how long this will be a part of her fashion statement:

I took advantage of Sile's increasing independence to explore my SoCal surroundings and see what's going with the local life in Duarte.  Weeks ago Sile and Frank had eaten at the "taco truck" which visits City of Hope.  Despite her erratic memory for many things over the past month Sile had no problem recalling that this truck set up outside the Flash Building, and I headed out in hot pursuit at lunch time.  If you have ever had the opportunity to sample sandwiches from from the hospital "bistro" you will understand the urgency of my interest in this taco truck:

I arrived at said Flash Building (housing the mail service and other low level hospital functions) shortly before two and was served a very tasty burrito asada.   As I sat eating in the shade the entire restaurant was dismantled around me and loaded up into a nearby van (the tent over my head was carried off as I was sitting there!).  The proprietor informed me that if I arrived early tomorrow they would have much more on offer - rellenos, enchiladas mole, ceviche, etc.  I plan to return.

After lunch I headed off to the hills.  One of Sile's nurses last night had talked about some local trails, and I was interested in exploring one.  (This nurse is apparently insufficiently challenged by 36 hours per week working on the transplant floor of the cancer hospital and raising two small children and has decided she will run the LA marathon.  She is training - with other City of Hope personnel - by running the trails in the mountains).  The trailhead was about a 30 minute drive from the hospital.  The first thing that struck me when I got out of the car was the quiet.  Still, calm, quiet.  There is a constant hum of traffic noise everywhere I have been down here, and it was a wonderful relief to hear, well, nothing.  Breeze and the sound of water from the amazingly enough still flowing San Gabriel River.  Here's what it looked like:

To close, let me thank you, once again, for the cards and greetings that you are sending to Sile.  She is pleased, encouraged, and truly moved by all of it.  If you have anything further to send, though, we ask you to hold off for a week or so.  Sile will be leaving the hospital on Wednesday to spend a week or so at the Marriott Residence Inn (aka Caretakers Central).  On March 7 we will move to a more settled location at a rented house in Monrovia and it will be feasible to start receiving mail again at that point.  We'll be sure to let you know.

Rest assured that anything sent to the hospital address will be received; Sile has daily appointments for the next two weeks and will make sure to check the mails on each visit.

Day +25: What a Difference a Week Makes

Last Saturday I left Duarte with Sile showing positive signs of improvement.  Nonetheless, she was in pain most of the time, had not eaten anything at all for over three weeks, and was dozing (or trying to) much of the time.   I was with her today for close to 5 hours and she was alert and chatty that entire time.  We walked out to the lounge and talked there for 45 minutes, enjoying the fading light as the sun set over the San Gabriel Mountains.  We watched the closing ceremonies of the Olympics and chatted about the nurses (Sile is well versed in the entire staffing setup of the 6th floor at this point) and other patients we've seen.  Sile ate a small bit of dinner, and I left her with her Kindle and ipad ready for perusal before bed.  It's amazing progress for one week.

There is a long road ahead.  It will take 6 months to a year for her new immune system to fully develop.  Fatigue and digestive difficulty will certainly be a part of her life for some time, and there are numerous other potential pitfalls.  But I cannot help but feel very encouraged.

I'll leave you with this unfortunately poor shot of Sile with her dinner.  She only managed a few bites of the chicken stir fry ("It's actually not too bad", she said) but did polish off the entirety of the orange sherbet that accompanied it.

Day +24: Lots of progress

Well I blew it!  Dropped the ball.  Let down the team.  Et cetera.  I missed a day of Sile's blog and I expect to hear from legion of you who have sent her cards and emails and who read the blog every day.  I realize that this dead air could be interpreted in a couple of ways and, in case some of you have begun to worry, I apologize.  There is no reason for worry.  Quite the contrary.

Sile is making slow, steady improvement.  She is ambulating (doctor talk for walking around), eating small amounts and seems to have the pain, nausea, and GI distress on the run (unfortunate phrase but I'm going to leave it in anyway.)  Best guess for discharge date is next Wednesday.  She is reading and watching tv, activities that were impossible even a week ago.  And, of course, the highlight of the day is when the mail comes in.  The cards and letters all you folks have sent have raised her spirits every single day.  Thanks again!     

Day +22: Dictation from Sile

"Are you blogging?"
"Right now?  No, but is there something specific you'd like me to say in the blog?"
"I think you should just write a short, two-sentence thing.  Mom is doing okay.  The doctors are happy with her progress and today she was feeling good for a portion of the day.  And say you're tired and that you might not blog for a few days but that doesn't mean anything bad has happened."
"I'm not writing that.  I don't want to deprive Dad of his opportunity to shine."
"That should be your next sentence."

Counts today were WBC 2.5, neutrophils 2.1, platelets 123 - all fluctuation expected and normal.  The day started a bit rough with nausea and other GI fun, but settled down by about lunchtime.  Visitors today were hypnotherapist, psychologist, physical therapist, and recreational therapist.  And now eating some beef and barley soup and saltines, and waiting for the Olympics to start.

Discharge day is currently targeted for Tuesday or later.  We'll spend a week or so at the Marriott (the CBYE home-away-from-home this month) before moving to a house that we've rented nearby.  I attended a discharge planning class yesterday and was thoroughly overwhelmed with information about cleaning, dust, bleach, can openers, dogs, babies, and all sorts of other fun things.  This phase of the journey is winding down, and a new one is getting ready to ramp up!

As mentioned above, I'm taking off tomorrow and my dad will be here through the weekend and Ralph back on Sunday.  Till next time!

Day +21: The D Word...

Meaning discharge!  Dr. Nakamura is talking seriously about discharge for about a week from now.  Her counts are good (down today but up and down is expected - WBC 2.8, platelets 124), and she's starting to keep food down.  Our nurse for the last two nights recommended finding something she likes, and just keep eating that.  Orange sherbet seems to the winner!  She's enjoyed two of those today, as well as a little broth and some toast.  Might not sound like a lot, but it is compared to a three days ago, let alone a week ago.

We took a field trip down to the first floor today for x-rays.  Wednesday is x-ray day, and since her counts are so high, we traveled to them and not vice versa.  Wasn't the most thrilling outing, but I do think a change of scenery, even to another floor of the hospital, was appreciated.  The other visitor today was the hypnotherapist, who originally was ordered up to help with back pain, but will now focus on nausea/eating since that is a more important issue.  I stepped outside for the hypnosis portion, and when I came back, my mom was quacking like a duck and hopping on one foot!  No, in all seriousness, she was doing an impersonation of Clint Eastwood in Dirty Harry.  

No no - it's all about guided imagery, and my mom seemed to enjoy it.  It's basically imagining this...

... so you forget you feel like this.

Signing off to enjoy the Olympics!

Day +20: Sile's Shih Tzu's?

My mom's face lit up this afternoon when I brought in the mail - TEN cards arrived. I told the PCA that we need a name for you, the army of supporters out there.  Clearly I need help because I don't think "Sile's Shih Tzus" is going to stick.  Regardless of your title, my mom (and the entire CBYE clan) is very grateful for all of you.

Today was a good day all around.  Her counts continue to look good (platelets 144, WBC 4.0), and she is making a strong effort to reduce her pain medications.  Her appetite perked up a bit, so she had a few bites of toast and a "resource slushy" which is just an Ensure drink frozen, put into a small plastic cup, and given a gross name.  We also had a ton of visitors - Dr. Nakamura, the occupational therapist, the social worker, the psychologist, Dr. Nakamura's nurse practitioner, and the nutritionist.  And this in addition to the regular nurse and PCA visits.  Phew!

Another benefit of her good counts is that she does not need to be woken up in the morning for "blood products" (which kind of makes it sound like you're at the meat counter - "I'll have half a pound of the grass-fed platelets please?"), which means more sleep which leads to feeling better.  I left her tonight on her Kindle, trying to fall asleep naturally for the first time since she's been in the hospital.

And finally, this video brought us a lot of laughs today.  Una's one-sided love affair with Kofi is being well documented on Emerald St.  She is in a very tactile phase, and loves touching Kofi's fur.  Kofi... not so much.

Day +19: Eoin causes a stir

A discovery as I embark on my new career as a blogger - you can see how many people have viewed each of your posts!  My lame-o update from yesterday took a huge nosedive in page views from the day before (not to mention I'm seriously trailing Ralph and Nora in terms of "hits"... that's what the cool kids call them, right?).  Apparently when you put "boring" in the subject line, people aren't thrilled to click on the link and read it.  Who would have thought.

Our big focus today has been on eating and trying to keep food down.  My mom has a small appetite, which is great, but hasn't really had any food in close to 3 weeks so we need to be careful about slowly reintroducing food to her system.  We've all been there though, where you want to go straight for the good stuff (in this case ice cream and pudding) the second you feel a bit better.  It's fallen on me to say no to that, which has involved some creative... well I wouldn't call it lying... maybe more like breaking the trust of the mother-son bond that has developed over the last 32 years?

The doctors do think the prednisone (or "the damn steroids" as my mom calls them) is helping the GVHD, so they agreed to slowly start tapering her off today.  I wasn't here for the conversation (apparently the doctor likes to come by at 7:30a in the morning), but the nurse reports that mom was a "savvy negotiator" in getting him to agree to reduce them.  Damn steroids indeed!  Her counts continue to look good (platelets 138, WBC 4.0, neutrophils 2.5) and we took a short walk through the halls that was much easier than yesterday.

My mom has always loved the Olympics (anyone remember the Olympics Triplecast from the Barcelona Olympics in 1992?  Probably not, but my mom had it ordered up for us), and this year they are providing a welcome distraction in the evenings.  I'm going to sign off so we can turn them on in a few.  I'll leave you with this panorama picture I took in the "Sky Lounge" by the elevators today.  My mom hasn't quite made it there yet, but I think in a day or two she'll be strong enough to get out there to sit and see the view.

Day +18: Boring is good

Not a lot to report tonight, which is a good thing!  I arrived in the morning after dropping Ralph at the airport (still hard to believe there aren't signs for the Burbank airport, but... it's true) and my mom was sitting up in bed, looking at her phone.  Compared to yesterday morning, this was a big improvement.

All in all, today was much steadier than yesterday.  She was off her nausea medicine for most of the day, took a short walk, and seemed determined to stay awake for more of the day than she has been.  We had about two and a half hours this morning talking and reading emails, and that's a nice stretch of time for her at this stage

Counts today continued to be good - platelets at 140, and WBC at 3.3.  There are three criteria for discharge from the hospital - blood counts, ambulation, and ability to keep food down.  She's got the blood counts, and we're working on the other two!

Highlight of the day was certainly FaceTime-ing with Una and Kofi (and Nora and Ainate).  Una started crying when we got on the phone, but settled in nicely for some cooing and fidgeting once her moms turned on the tv (don't tell the mommy bloggers on them).

Sorry, I'm realizing today's report is a little... boring?  But boring is good.  More days like today, please.

Day +17: I'm baaaaack!

The favorite son (as my mom likes to call me) is back!  I arrived in Burbank last night, and am getting settled in for the week.  I'm bringing Ralph to the airport in the morning - he did a most excellent job here and has been showing me the ropes .  It's only been two weeks, but things have changed since I was last here.




Hair?  Gone (I think she wanted to feel closer to Donor Frank and me).  Platelets?  Onward and upward (132k today).  Room decorations?  Overflowing!  The cards and posters have easily doubled since I was last here.  (pardon the panorama camera glitch on the left - there is a door out of the room, I promise).

As for day to day well being, it's a mixed bag.  When we arrived this morning, she was really not feeling well, physically and emotionally.  I think it was a combination of being confused and groggy from waking up, being due her pain meds, and remembering the enormity of the situation she's in.  "This is really hard" she said to me - and ain't that the truth.  The rest of the day has been spent dozing with intermittent periods of sitting up and chatting, and checking her phone.  She also took a short walk down the hall and ate half a popsicle, which we can hopefully build on in the coming days.  Improvement really is measured in baby steps here.

Day +16: Adjusting Expectations

Sile had a major flare up of back pain this morning (handled smartly by one of the new pain meds).  And yet another bout of nausea.  I despairingly texted Jim:  "When is this ever going to start improving?"

But later as Sile and I gossipped about her nurse and chatted about this and that, I somehow came to realize that things HAD improved.  From the first day of my time at COH, the nurses have talked about the incremental nature of patient improvement, that it is slow, with each day perhaps a minute bit better than the one before it.  "Of course," I thought, "I realize that!".  But as it turns out I did NOT truly realize that.  My expectations for Sile being "better" were that she would be all fine, basically back to the Sile I've known for so long.  And I think that because of those unconscious expectations, I have missed the tiny, tiny steps she is taking on the road to recovery.  Over time - such as the past week - these tiny steps have added up to a lot.  

For example, Sile suggested going for a walk today (that's a first).  "Dr. Nakamura is very big on this walking," she explained to a nurse.  She ate a tiny bit of a popsicle (I think she would have eaten more but I took it away from her - tiny, tiny steps being the theme of the day).  She was comfortable for short periods of time.  She read a few emails on her own.  None of these things are monumental, but none were possible a week ago.  (Admittedly, a week ago sets a pretty low bar, but still.)  

Sile's counts have begun flattening out as expected (whites were 2.5 and platelets at 115).  Dr. Nakamura says that the new cells have established themselves in the bone marrow and there will now be a very slow buildup to normal counts.  We also got the results of yesterday's procedures. There was no evidence of infection (good news) but there was a "mild" GVH in the gut.  GVH is graft vs. host disease, where the new immune system (that would be Frank's) attacks Sile's cells.  Half of all transplant patients develop GVH at this stage of the game, according to Dr. Nakamura.  He called this mild case a good sign (leave it to a hemotologist to think of something as horrifically named as "graft vs. host disease" as  good thing!).  He explained that this mild conflict with Sile's GI tract (something we don't want) indicates that Frank's cells are also attacking the old cancer cells in Sile's bone marrow, an action leads to a cure.  Something we definitely do want.  Another drug - prednisone - has been added to combat the GVH; hopefully this will lead to an easing of the nausea and intestinal distress.

This was Valentine's Day.  In addition to to the wonderful, wonderful cards sent by her friends, Sile had a visit from a group a knitters!  This group comes through COH every Valentine's Day to distribute hand-knitted scarves and hats to all the cancer patients.  This is their organization:

Even in her compromised state, Sile's unerring eye for fashion zeroed in on the most stylish and well-made hat available:

For those of you who don't know him, Gary Cecchi has been Sile's doctor for the last two and a half years of this illness.  He and her friend Liz had this greeting for Sile:

And with that, I'm signing out of the blogosphere.  Eoin arrived tonight and will be taking over caretaking and blogwriting responsibilites.  I'll return next week, to appreciate the accumulation of more tiny changes and steps forward.

Day +15: Hospital Fun and Games

I arrived at the hospital at 7:30 and was once again able to edge into Sile's room just ahead of Dr. Nakamura.  His report was similar to all the days before - pleased with the progress of Sile's counts (whites 2.7 and platelets 110) and dismayed at her pain and distress.  He mentioned that the two consultants - pain and gastroenterology - would come by during the day and he would be in close contact with them as the treatment plan develops.

Shortly after Nakamura left Sile was sleeping soundly and I took off to Pasadena for a swim and lunch (chicken kebabs from Janet's Mediterranean Cafe - delicious, both the swim and the kebabs).  I returned to see that two of the three things on my agenda for Sile that day had been accomplished in my absence - a shower and a walk in the halls - and Sile was resting comfortably.  

Not for long, however.  Dr. Lal the gastroenterologist returned around 12:30.  After a few questions and quick examination of Sile he decided to order an endoscopy and sigmoidoscopy to - literally - take a look at what's going on in Sile's gut.  I asked when this would take place and Dr. Lal said, "Well, he has someone at 1, so 2 o'clock".  We knew this test was a possibility since we had discussed it the day before; nonetheless it was startling to switch so quickly from "maybe we'll do this" to "it's happening in an hour".

Sile was nervous.  "I'm a big wuss" she said to Brenda, the nurse for the procedure.  "Not to worry," Brenda replied.  "Wusses are my speciality."  Sile handled things like a champ and was back resting in the room by 5.  Results tomorrow.

The only problem was a failure of communication from the nursing staff following the procedure.  I had accompanied Sile downstairs into the preparation area.  When they wheeled her off I was escorted to a waiting room and told that someone would fetch me when Sile was in recovery in about an hour.  I think you can guess where this is going - no one ever showed and after two hours (during which I admit to feeling nervous myself) I finally tracked down someone who told me that Sile was already back upstairs.  First bit of sloppiness I've seen at City of Hope.  

We had an interesting conversation today with the pain specialist Dr. van Zyl about sleep in the hospital.  She told us that studies have shown that even one night without uninterrupted sleep will elevate a patient's pain levels and have a negative impact on healing.  And yet in the hospital, where all our acute care takes place, things are set up to make sure sleep is interrupted.  Dr. van Zyl said she can guarantee that anyone coming into the hospital with chronic pain of some kind is going to experience worse pain simply by being there.  I  have certainly seen how sleep deprivation has negatively impacted Sile. 

Some of the interruptions are due to medical interventions (such as the midnight blood draw!) but the worst culprit is the IV pump:

Sile has a constant stream of 4 IVs.  When one gets an air bubble or other problem it beeps.  Loudly and obnoxiously.  It is then necessary for SILE to call the nurse's station to summon a nurse to come and set things right.  This happens between 3 and 6 times every night.  

Dr. van Zyl told us that the wireless technology to put the alarm at the nurse's station rather than in the patient's room exists.  But it is very expensive, and she doesn't see the hospital springing for it any time soon, despite the fact that their own doctors believe there is little that could improve medical outcomes more.   Frustrating for all.  

Let me close with a big thank you to all of you have have written cards, letters, emails and texts to Sile.  "Mail time" is always something she looks forward to and something that buoys her spirits.  We are very grateful.

Day +14: Wait! Who Just Made This Tunnel Longer?

Another good day for Sile's counts with the whites up to 2.4 and the platelets at 85.  This was, however, the extent of the good news.  The nausea continues; she has not been able to eat and keep anything down.  Pretty much all day Sile felt, let's see, I'm searching for the correct medical term here...crappy.   Sihe did walk the halls again today with the PT.  She was not one bit happy to be out there, but she managed.  

Dr. Nakamura called for consults with gastroenterology, with a pain specialist, and with a hypnotherapist (Sile's request).   The hypnotherapist came by twice but Sile was sleeping both times.  The therapist wisely decided that rest was more important than hypnosis at that moment and arranged to return tomorrow.  I am totally planning to avail myself of her services and hypnotize myself along with Sile tomorrow.

The wonderful social worker Nicole assured me that the pain consultant wouldn't be coming until the afternoon and I was safe to go get some lunch.  Guess when the pain consultant came.  (I suspect she was hiding behind the door and waited until I was out of sight before slipping into the room).  The result of that intervention was some beefing up on Sile's pain meds.  I WAS here for the gastroenterology visit by Dr. Lau.  Sile was in a brief period of alert good humor and charmed the good doctor.  Dr. Lau arrived here from India about the same time Sile arrived from Ireland and I think they bonded over their shared experience.  Lau was very thorough and careful in his questions and examination.  He didn't want to take any action right away and will give it a day or two to see if there is any improvement.  If not, he will conduct some testing to investigate what is going on.

I was tethered pretty closely to Room 6235 all day waiting for the various doctors and consultants.  Hopefully tomorrow I will have a chance for another outing.  In the meantime, here are the latest shots of baby Una:

and here exploring the beard of her highly entertaining uncle:

Day +13: Is That a Light There at the End of the Tunnel?

I arrived back at the hospital after my lunch time excursion and rounding the corner into Sile's hallway I was taken aback by an extremely welcome sight:  Sile sitting in a chair out in the hallway.  The afternoon physical therapist had come and taken her out walking in the halls.  Since Sile was unable to even participate in PT yesterday this was a rather surprising development!  They covered 500 feet with three rest stops - pretty good for a first outing, according to the PT.  The goal is to get Sile to walk 1800 feet, the Medicare-approved standard for safety navigating a home environment.  I asked the PT if it was OK for Sile to walk with family members and she replied that it was.  "Wrong answer," Sile joked (sort of).  So we'll be practicing.

The improvements noted yesterday have mostly continued.  The back pain is still there, but not in the debilitating way it presented over the weekend.  The nausea is still there and still awful, but it does abate from time to time.  Intestinal distress still occurs, but a little bit less frequently.  Progress, but a long way to go.

Counts have continued their upward climb with the whites at 1.7 and the platelets a whopping 68.  The nurse told me that these numbers are soon likely to decline a bit.  This is part of the normal progression of the transplant  - the counts will continue to trend upwards over time, but we should begin to see more up and down movement soon. 

Those of you concerned about my swimming fiasco yesterday will be relieved to know that I traveled to the Rose Bowl Aquatics Center in Pasadena today for a delightful, and very energetic, lunch time swim in the very respectable 78 degree waters of the 50 meter pool there.  Definitely more my cup of tea.

And despite the overwhelming clamor for more photos of pickle jars, I have decided to close this post with the most recent pictures of baby Una... and here they are:

Day +12: "If the doctors are all so happy, then why do I feel so bad?"

I'm getting used to saying the good news but the bad news, the positive but the negative - but today I'm glad to report pretty much all good news.  I spoke with Dr. Nakamura this morning.  He had been to see Sile early but came back later, at my request, to fill me in.  Sile's blood numbers continue their upward climb - she's at 1.5 on the white blood count and 48 on the platelets - enough that Dr. Nakamura said her response has been "robust".  (Good job, Frank!).   Her numbers have already reached a level that they are sufficient for her to leave the hospital!  One immediate benefit of her robustness is that Nakamura has removed a couple of the antibiotics from her regimen - whether because of this or something else the stomach and intestinal problems have improved a bit.

He also explained the source of the back pain.  The rapid increase in bone marrow activity (the bone marrow is the site where all the blood cells are manufactured) causes expansion of the marrow, which puts pressure on the bones.  This causes joint and bone pain for many patients at this stage of the game.  With Sile's history of spinal fractures, this pain becomes extreme.  The good news is that he expects the increase in activity to begin tapering off in the next couple of days, which will gradually alleviate the pain.  In the meantime they seem to have worked out a pain management regime that is keeping Sile's distress under control.  She slept most of the time today, partly in recovery from yesterday, I think, and partly from the steady flow of the pain medications. If you saw her today for the first time you might not be too impressed, but believe me, in comparison with yesterday we're in good shape.  Nonetheless, Sile's main question for Dr. Nakamura remained:   "If all you doctors are so happy then why do I feel so bad?"

Being here on my own I've become very aware of the need to keep myself healthy - if I start to go down the tubes then there is little good I'll be able to do for Sile or anyone else.  My new mindset is that my only job for this week is to take care of two people:  Sile, of course, and me.  It's interesting what a difference in my stress level just framing the situation like this has made.  No huge changes in my routine, but I am taking more small breaks to get away from the room, take a few minutes outside, relax a bit.  

In addition, I  took a lunch time excursion, first to a swimming pool in Sierra Madre, a nearby town.  Here's the sight that greeted me when I came out of the locker room:

Those of you who know my penchant for swimming in any body of water within a 10 mile radius of where I am can imagine my delight.  And then dismay when I got into the water:  it was heated to 90 degrees!  Not exactly conducive to energetic exercise, you might say.  I decided I had to pretend I was in a hot springs (it was really that warm) and stretched and lolled my way around in the water for a half hour or so.  Totally pleasant, but not exactly what I had in mind.

The next part of my plan was to take myself to lunch at Janet's Mediterranean cafe - a little hole in the wall place in a strip mall near the hospital where Jim and I enjoyed delicious lamb kebabs on our first night in Duarte.  But of course there was a hand printed sign on the door:  Closed on Monday.  Sigh.  I made do with a sandwich from the little market next door, which turned out to be a very interesting stop, full of unusual middle eastern groceries, such as:

The Row of Pickles

and The Wall of Spices.

Southern California really is a melting pot.  More on that in a future post, perhaps.

Day +11 Good News Bad News

(Posted by Ralph, despite what it says at the bottom.)
Jim left this afternoon to return to the jury (for those of you who don't know Jim has been on a jury in Oakland for the past three months - yes you read that correctly - with an unknown amount of time to go) so I am on my own with Sile this week.  Let's start with the good news.  The Numbers:  White blood count was 1.1, above the critical 1.0 threshold!  Platelets were also up at 32, indicating a real trend!  All very encouraging.

The bad news is the return of severe back pain.  Sile suffered several compression fractures of the vertebrae in her lower spine shortly after the onset of her blood problems two years ago.  This was extremely painful at the time (one nurse compared it unfavorably to childbirth) but has not been an issue for a while.  Dr. Nakamura indicated early on that the transplant treatment may aggravate existing problems, and it's possible that is what is going on now.  In any case, Sile is, as Jim so aptly put it, in a pit of misery.  The only silver lining is that the persistent intestinal distress has, thankfully, faded into the background a bit.  

I left Sile in the hands of a very caring and attentive nurse named Patricia with the confidence that she'll be well cared for and the hopes that we can begin climbing out of this trough tomorrow!

I've passed this sight several times walking from the parking lot to the entrance of the hospital but stopped tonight to investigate.  These cards hang from trees all around the hospital grounds and represent good wishes and prayers for folks in the hospital.

 Some samples:

Day +10: Ups and Downs

It's been a roller coaster ride for Sile today.  At one point this afternoon she was sufficiently less miserable to crack a small, wan smile.  More on that later.  Also in the "good news" category were her blood counts.  Both her white blood cell count and her platelet count increased by amounts -- as Dr. Nakamura said yesterday, "trending in the right direction."  During the afternoon the nausea abated to the point that she could take a few pills with tiny sips of water and actually keep them down.  Since some of the drugs she needs to take are administered only orally, this is a significant step.

That was the high point of the day.  The low point, only 5 hours later (thus the roller coaster analogy), was when the nausea, diarrhea, and pain returned with a vengeance.  Drugs which seemed to provide very speedy relief during the first part of the day were achingly slow to take effect this evening.  Finally, finally, 3 hours after taking a nosedive into a pit of misery, Sile is resting.  More drugs are on order for an hour or two from now and hopefully they will help her get through the night.

There were two things that caused that tiny smile this afternoon.  One was when the afternoon mail arrived and there were cards from 3 of you, sending your thoughts and prayers and news and gentle humor.  The other smile inducer was receipt of the daily Una-gram.

Now I know you can't all be as cute as Una, but your cards and emails also help cheer Sile enormously.  Keep 'em coming!  Some day in the not too distant future she will be able to respond personally and express her thanks.

I return home tomorrow so that I can resume jury service on Monday in the Trial of the Century (3 months and counting).  Ralph will be here, supporting Sile, for the whole week.  By the end of the week we are really, really hoping Sile will be over the worst.  Sookie, Sile's nurse this morning, looked at the white board in the room and said, "Hmm.  Day 10.  Four days to go."  Apparently, in her experience, the worst period for the patient is the first 2 weeks.  Most people begin to feel a little better about then.  As my Jewish friends would say, "From her lips to God's ears!"

Day +9: Trough? More like the Pits!

Today was the Changing of the Guard and the Nora/Ainate/Una team has been replaced by the Jim/Ralph team.  Nora took me over to the hospital this morning to give me the rundown of all I needed to know about Sile's care (a daunting list) while Jim stayed with Ainate (and Una) to help get them packed up.  One member of the N/A/U team was wise enough to catch a quick nap after the packing to rest up for the long drive home.

As I mentioned above, the "trough" is tough.  Sile feels completely "wretched" (her word) and says she didn't realize it would be this bad or go on this long.  She spends much of the day dozing - or trying to - I think with the idea of sleeping through as much of this part of things as possible.  She rallied, as always, for pictures of Una and the reading of your chatty emails and messages.  We even watched a bit of the Olympics coverage.

On the good news side her white blood cell count has climbed from .4 two days ago to .6 this morning.  To give you some perspective when she reaches 1.0 she's allowed to leave her room and go out into the hallways!  (Though to be frank she doesn't seem too interested in leaving her bed at the moment so I think visits down the hallway are low on Sile's agenda).  The good Dr. Nakamura told Jim:  "Numbers look better.  Don't expect them to go up every day, but this is positive".  A welcome message indeed.

Day +8 - Goodbye From the CBYs!

That's Convery Bullock Yiauekis.  Yes, we are leaving tomorrow and putting everything (nursing and blogging) in the capable hands of Ralph (with an assist from Jim for the weekend).  We will be back, as a family, at the end of March (I'll be down on my own a few times in between) at which point things will be so totally different!  The Trough will be a thing of the past, and instead we will be fretting about low bacteria foods and whether a walk to the park will be too tiring (maybe we'll drive instead?).

Unfortunately, for the time being, The Trough continues to have new depths.  Patient quite nauseous today and spent most of her time trying to sleep it away.  On the plus side, we are on the peaks of nursing!  We've scored several shifts in a row with Bre, Barb, and Heather--all feature just the right mix of competence and compassion (and COH is into continuity of care so when a nurse is on several days in a row, you'll keep getting her/him).  Ironically enough, in her drug addled state, my mom finds foreign born nurses to be the most challenging--accents muffled by masks--and gets a little frustrated trying to communicate with them.

I hear that it's raining up north and it's done the same on and off here today as well.  I hope it continues to rain as much as possible, just not between the hours of 12:00 and 6:00 tomorrow since that's when we'll be driving, not flying (as Una might suggest).

We'll leave you with some final thoughts from Una.  She has a lot to say these days!

p.s.  Lest you worry about the loss of Una in your lives, we keep all of the grandparents well stocked with daily Una pics, so Ralph will have many from which to choose.

Day +7 - The Trough

Oh The Trough.  Nurse Emily introduced us to this concept the other day, and it has been the moniker that several medical people have used to describe the stage that my mom is in--which is feeling pretty terrible most of the time.  Depending on who you talk to The Trough could last a few more days or a week or more; no one really wants to commit to a time frame because it's so different for each person.  That, however, does not keep the patient from asking pretty much every new nurse/doctor who comes in.  She still hasn't gotten the answer she wants so my guess is she'll keep asking.

The biggest development of the day was that post-shower, I noticed my mom's hair had begun to fall out.  A few strands here and there but she immediately asked for the "image consultants" to come shave her head (I have a lot of theories about what else they do with their time, besides shaving heads).  She was fairly blase about the whole thing, I think, because:

1. She's been expecting it since the first day of chemo and was surprised it hadn't already happened.
2. She's done it before and looked pretty good with no hair.
3. This being primarily a cancer hospital, there are A LOT of people walking around with no hair.
4. Relative to everything else that's going on, this was really not a big deal.
5. She already had a hat picked out to wear (thank you Jutta!  It fits perfectly.).

Also in the news today, many more cards, emails and texts.  Thank you all!  My personal favorite was a card from Jo Wayles with some choice pictures from the past (think early 80s).  Brought smiles all around (there were others but these were the only ones cleared for public consumption).

And, in the land of Una Convery Bullock Yiaueki, today she got a taste of what it's really like to live with Ainate.  She reads, literally, all of the time.

Day +6 - Wanderings

Apparently yesterday was a bit of an aberration:  patient back to feeling crummy today.  Visits from physical therapist and occupational therapist did not excite her, but she participated dutifully.  There is a whole cadre of people who come in each day to take care of various body parts.  None of their jobs seem particularly appealing to me except for the recreational therapists.  They bring activities to patient's rooms (painting, puzzles, etc.), organize weekly group game time, and once a month they host family bingo.  My mom briefly participated in painting with recreational therapist Shaka the other day, but it wasn't really her thing nor does she need to paint anything to liven up her room--it's already getting filled with lots of fun decorations, thanks to everyone who's sent cards and other do-das (special thanks to Amy Prentiss for the posters and Tail of the Yak knick knacks)!!

I found my favorite City of Hope dedication place.  So many names crammed into one space:

Ainate, Una, and I have gotten into a little daily routine, including Ainate spending some time at the hospital in the late afternoon while I do Una minding.  Yesterday, Una was having none of me and was fussy the whole time.  Today, however, we had a nice little walk around the neighborhood just as the sun was getting ready to set (this being southern California, we encountered exactly one other pedestrian during our 30 minute walk).

And finally, developmental update #247:  Yesterday Una discovered her toes and she has been totally obsessed with them ever since.  Her current preferred activity is to lie on her back and try and hold onto her toes.