Friday, January 31, 2014

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!)




Thursday, January 30, 2014

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)


Wednesday, January 29, 2014

Day 0 - and we're off!

As of 2:00p, Frank's stem cells are on their way through the IV and into their new home - wahoo!  Thank you all for your messages, notes, thoughts, prayers, pictures, and the like over the last few days - my mom has really appreciated each and every one.

Yesterday was a bit of a rough day, but she was feeling much better this morning.  She had a shower ("I need to be clean for this new body"), and did some physical therapy in her bed.  She got the lipstick on again and we had a little photoshoot.  The most-Sile moment of this morning came when she told me she didn't think she would be losing her hair and was disappointed.  When I asked why, she responded, "Because it doesn't look very good and if I'd known I was keeping it I would have gotten a haircut before I came down here."

Looking at some pictures of Una this morning:
























There was a seemingly long wait for the various pre-meds, but once they arrived, everything seemed to happen quickly.  Frank made it about 15 minutes ahead of his stem cells - I asked him if they looked familiar - which were greeted with much fanfare.  Well, really just the three of us and the two nurses saying "woohoo" but I think that counts.

Before they were "spiked":
























So now we wait.  This will take about 90 minutes - they are monitoring her closely, taking her vitals to make sure she does not have an adverse reaction.  And after that, we'll be watching for engraftment (Frank's cells taking over in her body), her blood counts to rise, and for any signs of infection or Host Verses Graft disease.  There's a long road still ahead, but a big big milestone today!

Tuesday, January 28, 2014

Day -1 - update from Frank!

Greetings from Frank in Southern California, where I’m with Síle as her bone marrow donor. Eoin is also here, having said good bye on Sunday to Nora, who headed back to Oakland. The non-medical parts of these notes are written with the Irish audience mainly in mind, so apologies to US readers for telling you what you already know.

Today was ‘D’ (donor) day for me. I’m just out of the unit where the stem cells have been extracted, and I saw the bag with Síle’s name thereon, so first part of mission completed. It involves being plugged into IVs on both arms for 6 and a half hours, the main obligation being not to move one arm from the straight position for the duration, a surprisingly hard thing to get used to. The staff are great, solicitious, informed, skilled and helpful. My nurse was Jade, originally from Taiwan; we both agreed that Taiwanese food is the best in the world; she went to some trouble to give me a map of the restaurant in this hood that comes closest. It is possible that I have not produced enough for Sile – one’s stem cell productivity declines with age..; if so (I’ll get a call this evening with the news), I’ll need to repeat the procedure tomorrow.

The fruits of this effort are transferred to Sile, who, having completed her chemo, is now on anti–rejection treatment. This happens tomorrow, Wednesday January 29th, ‘day Zero’ as they call it here, reminiscent of Cape Canaveral…they can press ahead even if my supply today comes up short, as they can add the extra later.

As you will know from Eoin’s blog, Síle’s treatment leaves her nauseous part of the time, with little appetite, but she engages with the staff at all levels with gusto, knowledge and sociability.

I was prepped by showing up every morning for the past 4 days at 10:00, get two neupogen shots which are designed to stimulate the bone marrow to produce stem cells. You are warned that your spleen could explode (but in well over 10 thousand transplants it hasn’t happened yet at CoH, and mine is so far intact..), you could get headaches and other aches and pains as the bones respond and expand. I’ve found it very difficult to distinguish the base load of aches and pains that are routine, from any new ones. But I have taken a few Tylenol a day, and have been fine.

Where we are

We are in the town of Duarte, 37° Latitude (Dublin is 53°), located on the Northern boundary of Greater Los Angeles, whose expansion further north is thwarted by the San Gabriel Mountains  (with the Sierra Madre Mountains to the East). The land in this west to east wall of mountains is in public ownership, managed by the US Forest Service, with wilderness areas, recreation areas and general hiking land in glorious profusion. Duarte and its adjacent cities and towns (Monrovia, Sierra Madre, Arcadia, Azusa etc.) all merge, linked by streams of low level strip (shopping) malls, with Huntington Avenue being a key artery. Nora observed that the quality of the landscape would be hugely improved if every now and then they had included a significant building or monument of visual distinction – but they didn’t. The distinctive city in the neighbourhood is Pasadena, 30 minutes to the west, home to California Technical University (Caltech), the Rose Bowl (a famous American Football stadium), and ‘old’ Pasadena, where the street scape of the early 20th century has been maintained. Monrovia is the next door city, and it too has ‘old Monrovia’ also with character, and a place where pedestrians have parity of esteem with motorists.

The beautiful weather – 40 days without rain and counting - mostly sunny, low humidity, with highs around 22 C – is perfect for visitors, but less so for the locals, who are conscious that this should be their rainy season; they are in their 3rd year of drought, the snow pack is only 17% of normal, and the Governor (Jerry Brown) has issued a ‘Drought Declaration’. Leading editorials in the San Francisco Chronicle and the Los Angeles times testify to the seriousness of the challenge.

The City of Hope hospital complex is in style like a university campus; ~150 acres (same size as UCD Belfield) with a lot of green space – which is watered every night - an impressive fountain at the front door, a number of low rise modern buildings, including clinic, library research centres, and the hospital – Sile is on the top (6th) floor. There are lovely garden areas, and the bird song is wonderful.  Almost very square meter – garden flower beds, buildings, atriums, waiting rooms, library etc. etc. is sponsored, mostly by individuals, but also by companies.

It also includes ‘the village’ a series of bungalows – labelled ‘casitas’ by Síle - each comprising one large bedroom space with TV, two large ‘leather’ brown couches, and 2 chest of drawers, one side board, table for eating, all in knotty wood. There is a one bathroom-shower, and a kitchen with stove (no grill) fridge, micro wave, cutlery, pots and pans, but no cutting board. There is clothes washing and drying facility (free) beside the office. The biggest gap in the offerings in internet access, which is not available in the casitas, a huge disability (They promise correction ‘in a month’).  The general view is that these facilities are functional (excepting the WiFi Gap) but seriously aesthetically challenged; management are very sparing with up front information, but helpful if asked.

Shopping involves going to a large supermarket called Ralph’s on Huntington Ave (left out of the hospital onto Duarte, right at Buena Vista, and left on Huntington) which requires driving a few miles. [Today I discovered a Mexican restaurant and Hispanic-run small grocery on the left corner of Duarte and Buena Vista, which is walkable]. The bilingualisation of this part of California is evident everywhere; one hears more Spanish than English spoken in the neighbourhood.

The Treatment 

This is a place that specialises in bone marrow transplants – this unit opened in 1975, and completed their ten thousandth in 2011 - so they have a serious track record, and it shows in the systematic professionalism we have encountered. There is huge pride amongst all staff about their mission and their hospital. Appointments are on time, explanations are complete, staff is super-responsive to medical questions, and when you ask directions, someone – often a volunteer – takes you to where you want to get to – shades of Japan.


Monday, January 27, 2014

Day -2, and what you can send!

Day -2 here and things are similar to yesterday, though slightly worse.  Mom has been very exhausted and nauseas - she's spent most of the day resting and sleeping.  She hasn't had much of an appetite, so far only eating a popsicle and drinking a few sips of an Ensure-type drink.  But we just had a gourmet meal of steamed rice and applesauce delivered, so we'll see!  They gave her a new drug - Compazine - for nausea earlier, which actually made her feel worse.  That's now on the "don't ever give me that again" list.  Despite all this, she was at least able to shower and put on lipstick earlier (the nurse was VERY impressed when she came in and saw the lipstick).

Between dozes, she sits up and we chat for a few minutes or she looks at her iPad and reads messages.  A few people have asked me what they can send - at this point, the best thing would be short emails or texts, especially with photos.  Do understand that she almost certainly won't write back, but each little note brings a smile to her face (I showed her a video of my room at the Marriott this morning and she enjoyed even that, so Ansel Adams quality is certainly not needed!).  If you want to send a physical card that we'll hang in the room, the address is below.  She can't get flowers, baked goods, stuffed animals seem like bacteria sponges, etc. - so cards/photos are probably the best.

And finally, tomorrow is the big day for Brother Frank (not in the Friar sense) aka Uncle Frank aka Donor Convery.  He has been getting red-cell boosting shots every morning, and tomorrow he'll report at 7:30a for his "harvest."  This will be a 4 - 6 hour process, so we may not see him until the late afternoon.  He hasn't gotten a straight answer about how knackered he'll be after, but it's hard to imagine he'll walk out feeling 100%.  We are very grateful that Frank has been willing and able to donate for my mom.  This has not been an insignificant process for him either, so a big and hearty thank you to him.

Mailing address:
Sile Convery
City of Hope
Helford Hospital 6th Floor
1500 E. Duarte Road
Duarte, CA 91010

Sunday, January 26, 2014

Day -3

Eoin here - I drove down yesterday and Nora flew home this morning.

Mom checked into the hospital yesterday afternoon, and was promptly hooked up for 6 hours of hydration before the final round of chemo.  We were told it would be a pretty intense one, but she seemed to handle it fairly well.  After chemo, they gave her platelets, as well as starting her on a regimen of anti-rejection drugs (seems like match.com should invest in some of those!).  Today has been more of the same - various IVs, pills, mouth washes, and the like.  She has been in pretty good form, dozing in the afternoon but no serious bouts of nausea today.

I hadn't been here until yesterday, and was very impressed even on my drive in.  I'm a sucker for appearances, and the lily-lined drive and seemingly iron fountain outside the hospital certainly give a good first impression.  But more importantly, the level of care here has been great.  Our nurse today - Barb - in particular has been wonderful (not to mention she was impressed with me when I made the bed when mom went to the bathroom... and actually found a pill in the bed she hadn't taken!).

The room is big, but otherwise standard for a hospital.  There is a nice large TV (with DVD player and Netflix subscription) that I'm sure we'll utilize down the road.  Given how strict they need to be with germs, caregivers/guests need to wear masks and gloves in the room.  I'm calling this Hospital Couture (at least in my mind).  Also forgive the Convery Bullock children's lack of originality in the pics below.

Tomorrow and Tuesday should, in theory, be like today - no more big rounds of chemo planned, just the countdown to Wednesday!




Friday, January 24, 2014

Day -6

Have managed to stay out of the hospital. Yea. But the chemo is not pleasant . I had forgotten what it is like which is probably a good thing!

Donor Convery arrived yesterday and had his first round of shots to boost his red cell count. No doubt he'll be heading to the gym for vigorous training what with alll that extra energy he has!

We have no wifi in our casitas which is a bigger deal than you might imagine . Frank is currently up in the hospital . Not for medical reasons but in search of wifi 

I go into the hospital tommorw where there IS wifi but I will most likely tethered to various drips

Eoin arrives tomorrow and Nora leaves on Sunday . (Frank is here until feb 3rd)

Xxo

Tuesday, January 21, 2014

-9 is over

Had my first chemo yesterday and alas was one of the people who had a bad reaction. Fever . But things are better today. Meet dr Nakamura later and he will decide if I should go into the hospital . Which I do not want to do. Nurse Nora is taking very good care of me! Xxo

Sunday, January 19, 2014

The transplant adventure begins

A last cuddle with ùna and Kofi before leaving for the airport. Nora is with me for the first week.

Friday, January 17, 2014

Day zero is January 29

Nora and I leave this Sunday and my outpatient chemo begins on Monday Jan 20. I go in to the hospital on January 25 for more chemo ( that's when I will lose my hair and look like my brothers!). The day of the actual transfusion of Frank's stem cells is January 29. Day Zero! Sounds like some kind of movie. 
I will be in the hospital until the end of February and then to a casita on the City of Hope (COH) grounds until mid May

This week has passed in a blur of packing, dr appointments and most importantly ----Úna gazing! Biut if I have not returned your call or email, I am sorry. I am mostly excited about this and very appreciative of DrCecchi and his team for getting me to this point. I am also grateful for the smooth hand off to  Dr Nakamura and his team. I am in excellent hands as Dr Cecchi kept assuring me!

Thank you all for the unbelievable help and support. Honestly I would not be here without you xxo


You asked so here it is. My address until the end of February :

Síle Convery
City of Hope
Helford Hospital 6th Floor
1500 E. Duarte Road
Duarte CA 91010




Donor Convery at work. Consulting  with Jim on wine choices!
I want a sweater like Úna's


Monday, January 6, 2014

1st day of testing: done

Finished a long day of testing at the City of Hope. All went well including the bone marrow biopsy which I was dreading. ( I have had nine in the last 2 years). And this was my first non - Cecchi biopsy. But it turns out that Nakamura too is a pro. Phew.

It is beautiful here in Southern California. We can see the mountains and the weather is balmy. City of Hope is awash in volunteers who accompany you from place to place, bring you coffee, and just in general make you feel better by their kindness and cheerfulness. I feel very comfortable with Dr Nakamura and  am now feeling more grounded about the whole thing. His staff is terrific too.

Poor Frank ( sibling donor) got caught in that mess in JFK. But thanks to Jim's quick thinking he did arrive here--- eventually. Jim got him a flight from  Philadelphia to which he repaired after hours of stress and mayhem. Jet Blue could not find Frank's bag, etc etc. You have heard all the horror stories. And unfortunately they are true.

We are here for a few more days of testing. Then home most likely on Thursday January 8 to return for what is called the conditioning regimen ---aka chemo ---on January 20.

Xxo

Úna doing her exercises. Very puzzling to Lola!