zen.org Communal Weblog

March 23, 2011

Stronger

Filed under: — elana @ 21:23 GMT

He’s getting stronger, def.  The boys visit was great, but I think it tired him more than he thought it would.  The collective energy of a 4yo and a 9yo is pretty intense.  Other Nurse D (we have two Nurse D!) was lovely to the boys, and they liked being there.  Only a half hour, but I think we’ll wait a while on any other visits…

We walk the ward, back and forth.  It’s about double the length of our house, so not very big.  I beg each day to let me bring him outside, or even downstairs.  Nope, not even with a mask.  “He’s neutropenic, nope.” /sigh

While he was up this morning, he had the window blind open for a while, then the sunshine started to hurt his eyes.  Wondering if I should bring in his sunglasses….

His numbers haven’t really shifted this week.  He got 2 pools of platelets while I was there today.

WBC: 0.4

Hg: 8.9 (that’s with no blood for about 16 hours)

Platelets 31

We’re adding a new number here: Neutrophils.  This is the biggie now…right now they’re at 0.0.  They are the numbers we want to see coming back up, slowly but surely. I don’t know the range that they’re looking for, but that’s now the number to concentrate on.

As for how much longer, we just don’t know.  I thought it would be another week or so, but I was told that it could be another 4 weeks.  It all depends on the neutrophils and when everything starts to recover.  B is getting the blood because his marrow isn’t making blood right now, and they have to keep the levels right (same with platelets, if even higher to protect against infection and hemorrhaging). The docs said that they’re expecting the numbers to start to rise in the next week or so, but if they haven’t started, they’ll give him a bit of growth hormone to see if that kicks the marrow back into gear. One doc said that caffeine is a marrow stimulant, but I don’t think I’m bringing him any triple espressos.

So for now, we sit and wait.  And wait.  Gin rummy is still fun.  We were working on a project today that turned out to be nothing, but hey, it exercised our brains for a bit. Books are still out right now.  I might teach him to knit, if he doesn’t watch his fingers….

Today’s shoutouts: Joanne, for the dinner (and cause she said she wanted a shoutout!); Nurse D and her lovely curly hair, no matter what you others think; Miriam and Roisin for coming all the way out here with a cottage pie for the freezer; and Magda who gets a perpetual one, cause she’s my biggest supporter right now, and I hope we can be hers (kick butt in volleyball!!!)

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Children fix everything

Filed under: — brendan @ 10:21 GMT

I had a great visit by *both* boys this morning; Thanfully, Elana was able to get them in (despite horrid traffic) for a little while before having to get them to school a little late.

Like any 9 and 4 year old boys, they’re not always sure what to talk about, but they’re able to share information when prompted and volunteer random unsolicited information, too. 🙂  But the best part is just seeing them being themselves, interacting, talking, et al.  We’re unsure how often I’ll be able to see them (maybe not again for couple of weeks or more), so I’ll relish the visit for a while.  I’m wearing a “Happy St Patrick’s Day” pin badge given to me by Patrick, which I’ll keep on for the day.

My fevers have been improving a little … last night I got a small one, and started to feel a little cool, but in contrast to say a few days earlier, I didn’t have the shaking shivers and chills.  I’m hoping this trend continues.

Had blood samples taken at 6am this morning, like normal.  Amazing how much blood they’ve taken out of me over the last few weeks!

My radio routine in the hospital is starting to take shape, mirroring the habit I use while working at home.  Morning Ireland on RTE Radio1 starts the day til 9am, then I switch over to Radio Nova 100.3 for awesome music for an hour or so.  Then I switch to listen to Tom Dunne on NewsTalk 106 from 10-12.  When Tom’s done (ha ha, apologies to Tom), switch back to Radio Nova for the rest of the day.  This doesn’t mean I actually listen to the radio this much here—it’s just the pattern of time and station choice.

Just head that Michael Stipe of REM composes songs on his mobile phone.  Some time ago Bono lost (?) a laptop with lots of lyrics and such on it; I wonfer if Michael S had any sort of encryption on his phone?  A decent password?  (The intelligent thief would open the phone up and get the memory card out of it to put into a stronger reader.)  I’m sure he’s well aware of the risks and has some way to protect his work.

Looks like a beautiful day outside; I’ve got the window blind up just enough to be able to see the bay (sitting up in bed), but keeping the bright sunlight from straining my eyes.  I like the diea of the boys being able to play outside and a) have lots of fun being outside, and b) expel tons of energy so they go sleep early and for a long time. 😉

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March 22, 2011

Early Day Scribbles

Filed under: — brendan @ 17:40 GMT

Listening to “Morning Ireland” on Radio One using the Sony Walkman.  Easier than trying to “watch” the news on the TV, and I came to the realization that I’m getting all of the information in audio form.  With the TV version, they use the display for part of the content, which means I’m only seeing part of what they’re putting up there.  How funny, the innovative nature of the Walkman when it was first introduced and yet it still functions well as a product decades later.

They did a blood transfusion at around 6:30am this morning cuz I didn’t have a fever, and still don’t.  Woo hoo!  It’s seemingly random when I do or don’t end up with one.  This morning made the better choice. 🙂

Got another eye exam  this morning.  The doctor said there are two things which can cause my conditiion, either the leukemia or the chemo combined with the white cells.  He said mine was the latter, which was good because that case will heal itself.  (Confirmed again!  Yahoo!)

While waiting for the eye exam, I had an interesting chat with a 60-something guy sitting next to me.  He had very strong opinions about how hospitals and doctors’ offices still can’t seem to schedule anything properly (his words), yet they still call you in/bring you in for a particular time.  He’s got a plan on how to analyze the performance of patient visits to come up with a predictible model which could be used to mre accurately schedule appointments.  He could make a fortune creating a business service specializing in this, particularly if he could make it within 10 minutes’ accuracy consistently.

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March 21, 2011

Two timing

Filed under: — elana @ 21:21 GMT

So nice to have B writing again!  His view can be so different from mine…

For the record, his numbers are stable.  Today’s were (I think, I can’t find the paper, but I’m pretty sure)

WBC 0.3

HG 8.5

Platelets 31

They gave him 2 platelets today, to keep them up.  Their goal is still around 50, but jeeeeez, I dunno if there’s enough platelets in Dublin for that!!  In each bag (pool, I think they call them) there’s 272ml, so he’s getting about a pint a day.

Today was mainly playing cards, looking at email and answering a few, and just chatting.  And some walking, he likes the walking.  We can’t go far, since he’s not allowed off the ward (“PLEASE?  It’s so nice out today!” was shot down fast), so we walk one end to the other, turn around, walk back.  It’s not a large ward.

One of his roommates went home today.  Big news, since B and his old roommate, J, were moved from their room to a curtained off area with 3 beds.  So it’s back to it being J and B, and I wonder if there will be someone new when I go in tomorrow?  Their old room was taken by two men who needed to be in isolation.  Fine, isolate ’em!!

It’s been much quieter on the ward, everyone’s in a groove, it feels like.  I realized today that B is the youngest, from what I can tell.  The guy who left today was next closest, but the others are all over 50, easy.

Tomorrow will be a bit funky, since I won’t get in til almost noon…Eoin’s getting a new bed from Freecycle and I have to go collect it! YAY! He needs one, and his cot bed is going to someone who needs it too.  Love it when that happens!

Each day, B is a little more “there”. He got really tired today (we waited in total for that MRI for 1.5 hours and we forgot to bring his water!) and I don’t like when that happens, because it can lead to him picking up something even more easily.  The goal is for him to stay healthy, get those WBC up and the cancel cells eliminated.

Today’s shoutouts: Rita, for the great dinner which we loved (and there was plenty!!!); Walter, for being there, and for everyone at the school this am who came up with hugs and a quick chat.

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Tired but positive

Filed under: — brendan @ 19:44 GMT

The test results of the Friday probe were fine, with some further followup tests due to double-check their findings, but they expect them to come out okay too.

It’s hard to catch, but I’m finding my eyes are slowly—slowly—improving.  I can see some things a little bit better than I could like a week ago.  Didn’t really start comparing until today.   If I cover my right eye, my left I can see the LG brand name on the bottom of the TV suspended from the ceiling.  I wasn’t able to do that last week.  I don’t know how long it’ll take, and still have issues with the eyes being able to focus, but that’s reportedly part of the process.  I can see Obama on the news, at least intermittently.

Had a long wait for an MRI (they want to be able to have a specialist further verify that things are/will heal up properly relatively on their own as part of th natural process).  I forced myself to walk around so I wouldn’t conk out, but boy did that drain me.  I may go to sleep relatively early and let them wake me up when it’s time to do the blood transfusions (two of them tonight).

While inside the MRI unit, they put big headphones over my ears—playing Radio Nova, the Dublin rock station which I would play all day long while working at home.  Woo hoo!  I have a hunch they tailor that particular thing to each patient. 😉

I’ve been given the challenge to drink eight ups of water in a day. If I can maintain that, they don’t need to hook me up to the IV for fluids.  I’m going to give it my best shot.

Tonight I’m going to try playing Pyramid, a game E and I alternated playing recently.  Better than listening to much more news, I think.  The goal is to get rid of pairs of cards which sum up to 13; no card card be sitting on top of one to remove it.  An alternative to Solitaire (or could even be a variant of it, actually).  All of this from an awesome book E gave me for my birthday a couple of years ago: Ultimate book of Card Games by by Scott McNeely.

P.S. As ever, apologies for any typos, grammar errors, or misspellings; it’s difficult to copy-edit beyond a certain level with the WordPress interface.  At E’s suggestion, I’m going to try to composing in an actual word processor next time and see if it has a better interface.

Nini.

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Better sleep, feeling ok (B)

Filed under: — brendan @ 09:00 GMT

Got a sleep-in til 6:30am this morning.  Woo ho!  Night went pretty well.  Was up til nearly 10 waiting for my temp to go down enough so they could hook up the further blood transfusion.  (So much for my sleep-by-9 plan)  But I didn’t have to stay up—could’ve gone to sleep and they’d wake me up when it was time, but I wanted to challenge myself having already gone longer than I could’ve imagined.

Breakfast each morning presents you with these choices: porridge (a frequent for me), corn flakes, rice krispies, or a couple of single-boxed cereals whose-. names I forget.  You’ve the option to get a piece of rbead (white or brown) with butter and a package of jam.  If you’re interested, you can ask for a cup or two of orange juice.  That’s about the extent of it.  And the ever-present cup of tea.  (Though coffee co an option, I have little confidence in the quality of the coffee I’d be receiving. 😉 )

(As an aside, I’m typing this into GNU Notepad++, the best Windows text editor on the planet [if you’re stuck using that OS cuz that’s what’s on the laptop you’re using and will stick with til after all of this, at least).  I tried to add the spell-checker support, but after a few contortions I’m giving up.  The integration with GNU Aspell is found lacking—it needs to be fully automated, and not rely on the user do something independently and then restart the editor.)

A little less pleasant

One of the many inelegant side-effects of Chemo is the diarrhea.  Sometimes seveere, other times just “more solid”, shall ne say, it’s still frequent enough to make your lower half get a bit unhappy.  They’re given me two products to try to help with this: one is called Clini San Emollient, which is a gentle soap-free foam to try to clean and sooth the skin which is feeling burned by the frequency and strength of each episode.  The other is Zinc & Castor Oil Ointment, similar to the nappydiaper-rash cream we used with the boys when they were tiny.  Combined, these two things sure make a difference.  This experience is odd … they can and have given me Immodium in the past, but I get the impression that it’s in my best interest to let my body do its own thing rather than suppress it (for later).

A little more plesant

It’s early enough still, with clouds in place, that I’m able to raise the blind over the window by my bed and look out at the Dublin Bay.  Usually the signlight is too bright and harsh on my eyes.  This time, I could at least see the waves (with some effort, Mr Blurry Eyes) and across to Howth.  The buildings for the hospital don’t make it the most aesthetic view in the world, but given that I don’t realy have a selection, I’ll take what I can get.


Gear-head

On the tiny little box of a table next to my bed, I’ve got my HTC Desire mobile phone (for texts and often checking email), an iPhone (no SIMM but loaded with great podcasts), and this laptop.  There’s a small power strip plugged into the wall on one side of my bed where all the plugs are; it travels under my bed to the other side by the little table, where I can plug in these things.  I’ve also got an old-school battery-powered Sony Walkman which lets me listen to the radio (usually Radio1 or Radio Nova 100) with really good sound. 🙂  GIven my blurry eyes at the moment, it’s much easier than trying to get the same going on my HTC Desire at the moment.  (There was a good HTC app for the radio, but having rooted my phone I’ve lost the ability to get at that particular gem.  S’ok, still worth roting. 🙂 )

Our wireless society still hasn’t quite defeated the need to have a bunch of wires coming out of things in order to charge them.  Wouldn’t it be cool if your mobile or your laptop had a battery which, on atual use, re-charged itself?  A Prius Laptop?

What’s the magic number?

I’m suddenly curious what the actual number of pills and meds hppens to be what I’m taking each day.  Maybe tomorrow I’ll start the morning with a running tally and see where it ends up at bed time.

Post-meal routines

In the real world: “make sure to clear your place!”

In the leukemia chemo-loaded vulnerable-immune system world: “When you’re done,

1) rinse your mouth for about 30 seconds using a sodium chrloride irrigation liquid, which is basically salty water, then spit it out;

2) squirt some stuff called Mycostatin into your mouth and slush that around for 20-30 seconds.  It tastes a little sweet, and is meant to prevent fungal infection (thrush) in your mouth, throat, and gut.  Anyway, you swallow this one, and I try to then not sip water for a little bit to let the medicine to its job. and

3) finally, I’m supposed to be using eyedrops about every 4 hours to prevent conjunctivitis.  The Pred Mild tiny bottle I use does the trick, which I try to group with the after-meal routines since that makes it easy to rememember and usually gets it close to target.  The exception is at night … I always have to do another dose of drops before I go to sleep.

The drops themselves actually burn, ever so briefly, when they’re applied.  A surprise the first time it happened, the feeling is now less of a shock and I just take it in stride.  (Like everything else?)

More information coming

Hopefully today, or realistically tomorrow, the doctors will get the results of the probe (alien probe? no) into my chest on Friday where they did a biopsy and some samples.  Elana filled me in on just how stoned out of my gourd I was after the anaesthetic they used on Friday—the afternoon and evening of which I really don’t remember a thing.  Anyway, I’m hoping they’ve figured out whatever infection is causing me to get brief coughing fits, since the x-ray itself showed an infection.

More later.

P.S. Current body temp 36.7, woo hoo!  37 is perfect, it’s when my fever goes up to 97.8-38.2 that it causes havoc because then I have to be given paracetamol (Tyloneol) to bring it back down in order to receive the platelets or blood transfusion.  I don’t know that I’m due any of those things this morning, but the absence of a fever is wonderful.

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March 20, 2011

First run on a No-Nap Day (B)

Filed under: — brendan @ 19:25 GMT

While I’m feeling fairly tired now, I’m amazed I was able to stay up all day and not crash out on Elana at some point.  Lots of chatting and hacking trying to get my laptop working and card-playing.  Bonus Good Day points.

I got to enjoy one of the treats sent by our friend Oona, based on the stuff her dad (?) used when he was undergoing Chemo.  Today’s choice ws a Hershey’s Cookies & CReam (?) cookie.  Oh yum.  I snacked on it a two different times during the day, trying to drag it out for as long as ossible.

The laptop is up and working again, this time more directly instead of trying to do a clever link through home.  (In part because if something happened with that link, it’d take too much effort for me to try to focus on the logs and config files and such here to try to fix it.)

Made it through all of that without getting drowsy (I think?).

Health Level OK

Body feels good, the current bag o’ blood is going to be done soon, with a second to follow hopefully.  My earl feel a tittle warm,matcbi me worry a bout a  fever, but it’ll all matter only when the nurse comes in and actually measures my temp.

Points for Burt’s Bees Honey Lip Balm, which must have had some small role in the remarkable improvement of the condition of my lips.  They were so try that finall parts of the dry skin were separating, making it awkward to eat.  But now, a day or os later, thy feel relatively soft and much more comfortable.

Same goes for a product I’ve never heard of before nowe: bioXtra moisturizing oral gel.  It makes your insanetly-dry mouth remousturuzie and feel much better using just their gel, not water.  Inner cheeks, gums, and the rest of the inside of the mouth feels betetewr within 5 minutes of appplying this stuff.  You guys out theree will particularly love the rectangular pink sponges on sticks which you use to roll around inside your mouth to appply the stuff.  It’s only in pink.  Makes me think I’m supposed to try to fix my facial makeup before going into the studio or something.  (Which itself tells you how little I know about such things.)

How’s the human bladder able to retain the volume of liquid which ends up coming out of us?!  I’ts amazing—even in a 4 year-old, muchless a 40 year-old.  It’s like the ultimate-expandable storage unit of some kind.  We need this model for our shopping bags.

I’ve verified that the Sony Walkman gets a nice clear signal for Radio Nova (@radionova100 / nova.ie, which will stream to anywhere in the world).  That’s so awesome, since it means in times when listening to music of any kind wouldn’t zone me out into a nap, I get to listen to and enjoy great tunes.  Hmm….of course, using the same as a way to help me into a nap sounds like a reasonable approach, too.

“Which Way Do You Turn It Off?”

Washing my hands this eve at a sign in where the hallway, as is goes by, opens up no the three beds where mine’s located, I managed to forget which direction to push the tap and whoooosh soaked my shirt.  D’oh.  I got one of the clean dry ones E had brought today, and it was only while putting it on that I heard the nurnse come up the hallway and say, “whay happened?”  I’ve no idea why, but my mind believeed I’d caught all of the spattereed water involved.  No, silly, there’s water on the floor, too.  THe tyellow “Caution Wet Floor” hazard will make sure others don’t get slippped up by my own ineptitude.  D’oh.  I know accidents happen, but as anyone who knows me, I’m the last person willing to accept that it’s to have made one. 😉

Ciao

My target is 9pm to finally give in and go to sleep.  Pity I can’t lay bets on myself. 🙂

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A first blurry mobile phone post (B)

Filed under: — brendan @ 08:42 GMT

No change in eyes, but wanted to try this… am curious what it’d take for a few sentences.

Woke at 6 after decent enough to sleep. Had a chat with nice Nurse S about carbonated vs still water. I told her I really can’t drink the carbonated any more cuz it leaves mouth dry and doesn’t come close to quenching my thirst. I’m to ask the doctors if the Nash’s Still is an ok replacement for the Nash’s Sparkling.

Enjoyed watching Rugby last night. I could identity some of the players by just looling, which was encouraging. Even saw the ball—a couple of times. Heh. But a little distraction is nice —or more to the point, something to do Pruett eyes, a bit, was cool.

Morning blood draws are done, as well as Joe Random antibiotic….there are so many it’s hard to keep track. Tho I bet there’s a list in the blog somewhere.

Taking breaks between pieces of writing. (I also expect some odd word substitution by android typing software which I won’t catch.)

As a new parent with the birth of our youngest, I got into the habit of cutting my own food up into small portions. This way I could eat my food with one hand while feeding him his own. To this day, I still cut mine up before eating —breeder or not. So cutting up my porridge into even hunks cracked me. Up this morning. So little point, yet the habit persists.

The St Anne’s Ward is divided into two parts which make up the third floor. The center area where the elevators are also has a big open rectangular room off of it. Crammed along the solid walls are nearly 20 chairs of different kinds. The third wall is mad up of institution-store windows showing you a panoramic view of… well, other hospital buildings. Not a holiday spot. 🙂

In front of the windows are two big TVs. When I first saw this, I figured it may be how they all watch a Rugby match togwther. Bzzt. The TVs are reportedly dead. If my eyes get better early enough, I still like my original idea of folks being able to watch something in here.

Typing this with my phone kinda worked, but maybe I’ll try my laptop next time.

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March 19, 2011

Brain was sapped I guess

Filed under: — elana @ 20:54 GMT

That chemo really did a number on his brain.  It’s resolving some, since the chemo stopped last night, but once he starts acting “normal” (well, for him) I’ve realized how off he was.  Yesterday, I was getting nervous cause he was reminding me, when all grogged up, of my brother who had a traumatic brain injury from a car accident.  For those who knew Mark, he was talking like him a bit, really slowly, and moving so slow.  I had to translate what he was saying to the nurses.

Today he was a different man.  Not 100%, by any stretch.  But if we say yesterday was his “worst” day and say that he was about 20% on the Brendan scale, today he was around 75%.  He got another shower with a lot of help, he trimmed his beard (OMG, so needed it, even if his hair does fall out at some point), and before I got there he did one or two laps of the ward.  While I was there, we walked to the day room, walked back to the bed, he showered, then back to the day room again.  This is a lot of energy for someone who couldn’t really stand up on his own yesterday.  He did have a 3 minute catnap after our two hands of gin rummy, and from that he was energized enough to get through me chattering on about whatever. 😀

He’s still having the fevers, last night was up to 39.8C.  But there were only maybe 3 spikes, where last week we were looking at at least double that per day.

His numbers today are:

WBC 0.3

Hg 8.9

Platelets 51!!!!

Hopefully platelets will stay high, tho they’ll probably be a lot less.  Bloods are taken in the morning, and he had a lot yesterday for his scope.  Since then no platelets or transfusions, so we’re expecting his numbers to start to go down a little, until his bone marrow starts to make new baby blood cells.  The key is which blood cells he makes, and that will tell us if he’s in remission.  Until then, it’s a waiting game.  I forsee a lot of gin rummy, but am hoping that I can dress me and the boys in masks and bring them in for a visit.

For now, I’m checking out.  Starting to get a tickle in my throat, which means I’m coming down with something, so gonna go slurp on hot lemon and honey and deny a cold!

Today’s shoutouts: Liz, for listening; Anne for the laughs; Kamilla and Greg for the lifts for P; Aunt Mary for being with the boys; and B….for being B.

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March 18, 2011

Out of it

Filed under: — elana @ 22:35 GMT

B was so out of it today.  By the time I got in this morning, I missed him by about 1 minute…he was heading down for his bronchoscopy, to get a bit of the infection in his lungs so they can find out exactly what the infection is and treat it thoroughly with the right antibiotic.  We won’t get results back til like, Tuesday, but still, it’s done.  So I was sitting waiting for him for about an hour and a bit, and when he came back up, ohemgee, he was *stoned* from the general anesthetic.  We had the same conversation at least 3 times today, each time it was new to him.  When I mentioned this to him, he started reenacting a video we have of him from when he came out of the aphasia, when his attention span was about 3 minutes.

He was weak and out of it for most of the day today.  One time he fell asleep in the middle of a sentence. Overall the procedure went well, and I don’t think he even had a sore throat.  He did say that he had one place that felt rubbed a bit hard, and that the infection, instead of being in one big lump, seems to have broken up a bit.  They pumped a bit of water down into the lung, and then suctioned out some to get the sample.  Maybe that broke it up a bit?

So I’m sitting there, cause I’m thinking that the last chemo he’s gonna get in this round is a big deal.  I made sure to be there for it, and it was kinda momentous for me.  Him?  He woke up for 3 minutes, and didn’t remember it an hour later.  S’ok, having him sleep through a day of being in the hosp is totally worth it.

Was a quiet day on the ward as well.  I think because it’s that weird day between a weekday holiday and a weekend, when things are supposed to be open, but most people won’t open cause they’re going away or they just don’t wanna.

So, anyway, he was out of it most of the day. Was grand.  Will be going back in tomorrow, as soon as I figure out who goes where…B’s aunts have the boys for the day, but there’s two birthday parties in there too (one for each of them to go to!) and we haven’t bought pressies yet! Must get more organized!!!

B’s numbers for today (you did read the previous post about what the numbers mean, right?)

WBC: 0.3

Hg 8.5

Platelets: 39

They gave him 2 pools of platelets today, before the ‘scope.  Nurse S said that they would give him 2 bags of blood tomorrow as well, to keep the Hg up.  He did have fevers overnight, including one that soaked his shirt this morning.  I’ll be happy when those are done with!

Today’s shoutouts: Viv, for the gorgeous dinner and the cuppa this morn; Student Nurse L, for the bit of laughs we had on a quiet day; Kamilla for being with the boys so much; and Magda, who we couldn’t live without!

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