zen.org Communal Weblog

It was only a week ago.  It’s stunning, in the true sense of the word. One week ago we were happily ignorant of what was going to happen the next day. Wild.

Another nap

Longish day today, tho I’m not sure why.  Boys were back in school, so I got a lift in with the lovely M of the Minestrone Soup who was going to a meeting in town anyway.  Got to the hosp by 9:45! B had another rough night, lots of wakeups and fitful sleep.  40 deg (that’s around 104F) fever at one point, apparently.  I don’t like this fever thing, neither do his docs.  He’s getting constant paracetamol and we put wet cloths on his forehead to try to cool him down.  Part of the problem is that he can’t get blood if he has a fever, because they have to make sure that he’s not reacting for some reason to the blood itself.

So he didn’t look that happy when I came in, he was tired and a bit cranky.  I would be too, being woken up for blood tests, changing IVs, blood pressure, whatevers.  I just have the boys who wake me up at night :-).

He had a lot of blood tests today, to try to figure out where the infection that is causing the fever is coming from.  There are good and bad blood draws: good ones come from his central line, which means he just sits there and it happens and there’s no pain.  Bad ones come from his arms, the poor pincushions they are turning into.  It hurts him a lot to get the arm draws done, but he’s very good about it. Today, nurse N tried to get some and it just wasn’t coming out enough from his left arm, so she had to try again in his right arm, which hasn’t really been used for blood.  Which is good, I guess, cause maybe it’s less sensitive.  His hand is just covered in little pinpricks.  Part of it is that he’s losing some weight being in there and not moving around, so there’s not as much fat to cushion the needle, in a way.

He was to go for a few scans (brain, chest xray) to find the infection, but that got put by the wayside because of fever. So he was in the room the whole day, and we didn’t manage to wash his hair. /sigh

I think today was a day of ups and downs, but nothing major.  There was a lot of activity, but B didn’t really move.  Very odd day, actually.

I can’t find the paper that I wrote down his numbers on, but I think they were:

WBC: 0.3 (up slightly)

RBC: 9.5 (? might have been 7.5, but they are def up from yesterday)

Platelets: 22 (I think. Dr M said that normal is around 20, but she wants him up to 50)

Platelets

So while I was there, he had chemo, antibiotics, a bit of fluids, platelets, more antibiotics, plus the normal pill complement (antinausea, kidney protection, paracetamol) and his mouthwash and eyedrops.  One day I will write down everything that he gets completely.

Sorry this is so disjointed…I still need to make cupcakes for P for tomorrow (I’ve been putting it off for a week, this is the procrastinator kicking my butt right now), and my brain is all over the place.  And for all of you who have sent cards or dropped them in the letterbox, I’ve brought them all in to him (he loves the ones from the Burke-Kennedys!) and he’s been able to focus on each one.

Today’s Shoutouts: M of the Minestrone Soup for the lift, Jerry and Anna for having P for dinner, Magda cause she’s just amazing, and Grace with the suicidal dog for cracking me up a few minutes ago.

ETA: Just found the paper with the numbers on it:

WBC: 0.3

RBC: 8.8

Platelets: 31

Thanks for all the comments on yesterday’s post.  It’s nice to know you’re all reading!

Today was better.  I got into him early for an hour, while our friend D and her son hung out with the boys.  Weekends are going to be tricky, but we’ll work that out later.  So around 10:30, I go in and he’s talking to Dr M (not one of our normal docs, he’s the weekend hemo doc), chatting and talking about things.  B looked better rested, but still tired.  So we sat and talked for a bit, and he rested.  I talked to Dr M about things that family want to know (like what are the procedures for getting typed for a bone marrow transplant) and B just chilled.  His fever was on and off again, including chills that shook the bed.  He’d gotten more blood overnight (again, thank you Anonymous Donor) and some platelets.  Not a great sleep overall.  Nurse D and I worked out that B would get some paracetamol for the chills/mild fever just so he could rest, and Nurse D would keep the stuff done to him down to a minimum.  We also worked out that B thought that his bed had to stay at an angle for the oxygen delivery to happen, but D said no, it can be flat, we’re happy with your oxygen levels right now, it should be fine.  That’s when I realized how much the slight angle in the bed has really been effecting B…we put the bed flat and B sighed contentedly.

B put in his earplugs and curled up, and I left.

When I came back around 4:30 (the lovely Aunties Mary and Sheelah were with the boys at our house), B looked much more rested.  He was sitting with his back almost against the wall, propped up with pillows, and his feet flat on the bed, knees up. He hasn’t had the energy to sit like that (or the ability, with the angled bed) for a while. He looked nice and pink and relatively normal, except for the few times he’d look away from my face and I could see he was seeing something in his eyes I wasn’t.  It was almost like he was blind and couldn’t see past his eyes, if you know what I mean.  It’s scary, but he says it’s easier than focusing sometimes.

So he had napped for a good chunk of the time I was away.  We just sat and talked, he had his dinner, Nurse D came in to be a vampire and take some blood to check that there are no infections in his central line.  That’s the worst part, because D had to take it from B’s poor left hand, which has about 8 pinpricks on it where they’ve had to do that.  His veins there aren’t so hot, but D got it in and done relatively quickly, tho B did hurt a bit from it.

Tomorrow is hair washing day, which I’m slightly dreading in case we have hair-falling-out issues. But onward and upward, right?  Oh, his numbers from this morning are….WBC are at 0.2 (admission level: 101.5), reds are 6.8 (admission: 7.7, remember he was anemic when admitted, they like those to be closer to 8 or 9), platelets 22 (admission:117), and neutrophils (a type of wbc) are at 0 (they didn’t have an admission level in the chart I looked at).

So we’re getting closer.  Tonight was the beginning of day 6 of chemo, last chemo of first round will be the Friday morning dose.  Seems so far away, but as Aunt Sheelah said tonight, this week has totally changed over the week, and it has.  We’re in more of a routine now: I’ve worked out that I’ll go in on the Dart right after dropping Eoin at school, and Magda will get the boys from school and I’ll be home around 4:15 every day, maybe later.  Those are the best times for B, it’s when he has the most energy and it coincides so well with school.  Weekends will be a bit different, as will Paddy’s Day and the day after, but we’ll work that out later.  I want to be there early on Fri morn, as he gets the last dose of the first round.  Yes, I know it’s 7am then, but I feel like I should be there for the momentous occasion.

He’s in a better headspace right now, which is great.  He is looking for a good app for radio on his HTC, the one he has he doesn’t like, a big step when he said that he’s feeling overwhelmed by music a few days ago.  I’m going to get a few podcasts for him overnight (Wait Wait Don’t Tell Me, Stuff You Should Know, and I’m asking on Twitter for a good tech podcast) and we’ll see how that goes.  They’re not too long, and he can pause and rest any time he wants.

Had a funny moment with H, one of P’s classmates moms who I saw today.  She said “I don’t pray but all my good thoughts are headed his way.”  I realized that’s totally the Educate Together way…light on the praying, but all good vibes.  They’re working so so well, so if you could just keep ’em coming a little longer, it would be great.

Today’s shoutouts: the lovely Aunties, who are absolute stars; the Gibbons family for the hospitality and kindness today; the Delahunts for their hugs; Helen just for being able to say hi and park in our driveway; Dr M for being straight and filling me in on things; and the lovely Nurse D and L, for taking such great care of B.  Oh, and DOUBLE thanks to Mary, for the minestrone soup that was gorgeous (and is now gonegonegone.  I need that recipe!)

Forgive me, since  I’m really tired so there might be a few errors.  Actually, is that now a common theme?

B had a rough day today.  He’s tired: physically and mentally.  He doesn’t want to be there, of course. But his vision is getting a bit worse, and that’s getting him down.  That’s part of the fun of today…we got to ride in an ambulance!

But wait!, I hear you say.  Weren’t you already in a hospital?  One of the largest in Dublin?  YES! I exclaim!  BUT there aren’t eye docs in Vincent’s on weekends.  Let me start over…

I walked into the room this afternoon at around 2.  I said “Hi sweetie, how was last night?”  He said “It really wasn’t that great.”  I walked out to the nurses to talk to them, since talking too much tires him.  Basically, his vision is worse, and since there are no eye docs around, they got the reg to see him (that’s the equivalent of a resident, if I understand it right).  Now, this all could have been done before I got there, but B didn’t want to have them put drops in his eyes, in case (steel yourself now)…he couldn’t see me when I got there.

/blows nose in tissue.

At that point I said, Get the freaking drops already!  They put in what B and I call the Mr Burns drops: B had to get them for his laser surgery years ago, and they dilate your pupils so the docs can see your eyes really well.  He totally looked just like this.

The reg checked out his eyes, and basically said that he thought that there was some bleeding or something, but he wasn’t an eye doc.  So they talked to the SHO (senior house officer, IIRC?) who agreed on them calling an ambulance to transport B to the Royal Victoria Eye and Ear Hospital, or what everyone here calls the Eye and Ear, where they would see him in the A&E department right away.

So, a little while later, after B had his dinner so I think it was around 5, the ambulance men came in and off we went to the other hosp.  Irish ambulances are kewl, btw.  They have these hydraulic lifts, and proper seats for passengers.  It was me, sitting near B’s head on the stretcher, Nurse D behind me, and the ambulance man riding backwards against the front of the ambulance.

We get to the eye and ear, and get seen by the intake nurse, B.  She was a bit scary and intimidating (you should have seen Nurse D’s eyebrows go up, was hilarious) until her peppering B with questions made him visibly upset.  She chilled then, and was a bit gentler.  She checked his basic vision, and then we went in to see the eye doc, F.  Who looked at his eyes for a few minutes, and basically said that he is hemorrhaging in his retinas due to the low platelets in his blood (true, since he got two bags of sticky platelets this afternoon while I was there).  They aren’t sure if it’s connected to the leukemia or the chemo, but it would be one of them.  And there is no guarantee that it will clear up, or that it won’t.  They just don’t know, and won’t until the leukemia goes away.

So we get bundled up, wait a bit in another room, and the ambulance men come back (“Sorry there, we were on the Naas Road with a van versus car…guy didn’t want us to cut the car to get him out.  Twas new, he said!”) and off we go back to Vincents.  B was absolutely wrecked at this point.  I’d say it only took about an hour and a half, but he was sitting up most of the time, which he hasn’t done a lot of in the past few days.  Plus talking, it was a bit chilly, the ambulance really didn’t have good shock absorbers and the stretcher looked kinda uncomfortable.  But hey, this way he was so happy to be back in his room in Vincents, he was looking forward to it!

We got back, he got his next double dose of chemo (it was Kool Aid in a syringe night again, as well as the drip in the purple bag) and was almost asleep at the end of that.  He still needed another 2 bags of blood tonight, but that happened, I guess, after I left.  I needed to meet up with B’s Aunt Mary and Sheelah, who had the boys for the afternoon.

So this is where he is…he’s not able to read or type.  The laptop came home with me…and those of us who know geeks know that that’s possibly the saddest part of all of this.  I’m skimming his email each day and filling him in on things, but any responses you get will be from me.  He’s too tired to dictate too much to me, so the writing will be only from me from now on.

The boys are doing well, so far. P likes that he can pretty much go to whoever’s house he wants. Eoin’s just hanging out and going with the flow.

As for me?  Holding it all together, I guess.  This evening  was the beginning of day 5 of chemo, so it’s been 6 days from diagnosis.  We’re halfway through the first round of chemo.  I can’t really remember this week, and I can’t really imagine the next week.  Our lovely friends and family are keeping us going, and there aren’t words enough to express our thanks.  We’re going to need those good vibes next week, when the chemo is done, and we start with the wbc regeneration.

Shoutouts today to the awesome Nurse D, who helped us laugh through some of this; to Mary for the minestrone; Dolores for being there; and the awesome Aunties who are propping me up so well.  And many many congrats to Magda’s brother and sister in law, who had their second son this morning at 6!  Whoo hoo!  The world needs more wonderful people like them!

A couple of pics of things here, to keep things fresh. One or two might not be okay for the squeamish, just so’s ya know.

(more…)

I think it’s day 4.  They all blend.

I talked to the oncologist and two of the hematologists.  His wbc count is now 1.8.  So in the course of 2 days, it’s dropped dramatically.  At the same time, his red blood cell count is way low too (4.8 I think she said).  The red blood cells contain the hemoglobin, which are high in iron and carries oxygen around his body, so the fact that they’re low means that he is exhausted.  I brought in my laptop today expecting him to be asleep for a good chunk of the day. Last night they gave him some platelets as well as the bag of O positive blood.  Today he’s getting another 2 bags of blood and at least one more bag of platelets.

I chatted with Dr M this morning, and she this is well within the range of normal and what they were expecting.  He’s very frustrated, because he’s not one to just sit and do nothing.  His vision is blurry and has a few spots, enough that he can’t read his email or post on here (yes, we’re going to have to deal with my non-writing skillz).  But I am reading his email to him, and he’s very blostered by the news that Ruairi Quinn is setting up a forum to “identify how schools can be transferred out of Catholic patronage as a matter of immediate priority.” You can take the guy out of the ET school but you can’t take the ET out of the guy.

As for the family, we’re doing okay. We have a great Polish support network, with Magda and her parents jumping in with both feet for the boys.  Most everyone here has said they are more than happy to take the boys for a playdate, dinner, whatever.  B’s aunts have been dropping by the house to chat, Mary did the Lidl shopping for me yesterday which was a huge help.  They’re taking the boys after P’s football tomorrow for the afternoon. Last night Lisa and Ro came by for a visit at home, bringing snacks for my purse, smoothies, Rescue Remedy, chocolate cake, sleepy chilltime tea, and lots of distraction. And to make sure I ate, they brought me some sushi, my favorite, the salmon and avocado handroll. Nom. It was great to just chat about the shop and our friends and Ro’s new Kindle for a while.

The nurses and docs here have been so incredible.  Say what you will about the Irish health system, I have no problems praising the staff here.  All the time in the world for us, they do total patient care and they keep asking me if I’m eating (yes, I am.) I hope the new minister for health can make the system more workable, so everyone can have this level of care throughout the whole system, instead of being gagged due to poorly executed budgets.

Just got the new numbers from the team, things are looking good…his white blood cells are now at 18.6. This is getting closer to “normal”, tho we’re gonna go past normal and wipe ’em all out. His red blood cells are at 5.5, which is quite low and effecting him some. He’s really tired and they don’t want him to get out of bed anymore for any reason, and they have him on the nose oxygen thingie to get his blood oxygen up. Both of which are normal, from what I can tell. He’s to get a transfusion later today of some red blood cells, once his fever goes down some more. He didn’t manage much lunch, but tried valiantly. I was here for his next dose of Daunorubicin, in two giant syringes that go into the central line. He’s now fallen back asleep for a bit, they are about to give him more antibiotics for his fever, as they can’t give him the transfusion until the fever is down some.

He also mentioned that his vision is a bit funny (don’t worry, he told the docs). His skin is very pale, slightly yellowy. I’m glad he’s sleeping, cause the more he sleeps, the faster it will all go for him.

Yesterday he was pleased to find out Ruairi Quinn is minister for education, he’s looking forward to Labour keeping their promise of recognizing Educate Together as a second level patron.

Remember, if you have questions, please ask in the comments of the posts, cause others will have the same ones and we’d love to get everyone informed at the same time.  We also have more than a few medical friends who might be able to answer some on here, or correct if info is wrong.

My dad asked: “This was all caught so so early, like in a beginning stage – how does that play into the medical conversation?”

Part of the name of his type of leukemia is “acute”, which means sudden onset in this case.  When B went into the hosp back in December for the campylobacter (food poisoning), they drew blood then to try to figure out what was going on.  When Dr Kamal came to give us the news on Monday (it might have been Dr Kuan, actually, but no matter) I asked if there was evidence of this in his bloods then.  He said that they went back and looked and there was NO evidence of it.  B was released from hospital then on December 16.  So on that day there was no sign of it.

B did have some unexplained bruising last month, but we just put it off as part of his short term memory fun. That apparently is another symptom of AML, which of course we didn’t know at the time.

As for the medical conversation, I don’t think anyone medical has actually said that we caught this early.  They’ve more said that it’s been caught, and now they’re going to treat it. I will try to ask today, if I am there when the doc is around.  Can anyone add more in the comments?

Before I forget, these are the pics the boys drew, and were we put them on the wall next to B.

Patrick's drawing

Eoin's drawing

Everything on the wall

On my third trip into see B today (first was with P, then back to talk to the social worker and hang out, then back again after the boys were in bed), we got good new: his white blood cell numbers are dropping already.

He was admitted with a WBC level of 101.5. Today it is 79.2. We want them to drop, in order for new cells to grow and see how they regenerate (there are enough docs reading this to tell me if I’m incorrect). As a side effect, his red blood cell count is also dropping; he’s technically anemic. They will give him a RBC transfusion once the WBC reach a certain level (no, I didn’t ask, it was a lot to be scribbling down).

There was a lot of fever today, and he’s looking more uncomfortable and really not that happy. This is normal, the fevers, and he’s on paracetamol (Tylenol) and 2 antibiotics to combat the fever some. Fever is normal, the lovely night nurse told us, so we are taking it as B is totally normal. For once in his life. 😀

We got other good news from family too (/waves to D&D) and we will take any and all good news that appears.

Also, shout out to Walter (thanks for the lift), his daughter Third In Command for staying with the boys tonight, and Declan, for putting out my green bin while I was away.

And now, as the night nurse said “You look knackered!” Very little food for the day (sorry, no, I really am trying to eat but everything makes me think I’ll be sick) and very long day equals Elana coming down with a cold. So off to bed for me and hopefully for you all too. B took a sleeping pill tonight while I was there, so I’m pretty sure he’s deep in dreamland.

Today has been pretty easy-going, compared to the days before it. I woke up at 6am having to pee a few gallons, and by the time I got back to bed I found I was having trouble breathing. It felt just like an asthma attack when I was little.

I told the nurse, who got the on-call doctor to come and check me out. I could inhale, but exhaling was really hard. He listened to my chest, checked my temperature and blood pressure, did an EKG (with little sticky metal jobbies to do the reads, all of which yank out chest hair incredibly well), and in the end said everything else seemed okay. It’s traditionally one of the ways anxiety manifests itself when someone’s mind is trying to handle traumatic information. Another time in the day when I had to go to the bathroom, I found my heart absolutely racing when I got back to my bed. Same deal. All expected, and they said I shouldn’t try too hard to chill out—just let everything take its natural course.

I slept reasonably well through the night, even without the sleeping pill which was offered (“refused” was the nurse’s way of phrasing it, making it likely I’ll accept it tonight). However I had a bit of a fever, which made me overheat and sweat. After that breathing stuff, my energy was absolutely gone despite all the sleep I thought I’d saved up. I was able to fall back to sleep a little, but had to go slowly.

Patrick was able to come visit today! Elana had done an amazing job of talking to him yesterday about what was going on, and he showed that he’d been processing some of the information, and didn’t look upset. They were here for about 45 minutes, in which he and I got to talk about all sorts of things. I showed him the view out of the window I’m near in my room, which is a really pretty view of the Dublin Bay and Howth.

He asked me what the thing patched on my neck was. I lifted my shirt and explained why the central line was there. He didn’t look scared, which was a great relief. He then noticed the back of both of my hands were riddled with little red marks where they’d been trying to draw blood before the central line went in. I told him they had to do it to try to get blood from me. He thought for a second, then announced, “That’s just MEAN! Why can’t they be more careful?!”

The time flew by, but it felt wonderful to get to see him. Might be able to see Eoin, age 4, tomorrow. Both of the boys made be get-well cards on big sheets of paper, which are now taped up onto the wall by my bed next to a picture of them from when I was in Gorey last year for an Educate Together Board meeting and E brought the boys down to pick me up.