From Today's Inbox

From: Sue
Sent: Monday, December 20, 2010 8:04 AM
To: 'Cynthia Miles', 'Paul Balfour'
Subject: Yesterday

Okay, I have had all I need for Christmas now. We had such a magical afternoon, Alex and Nicky in top form, laughing their heads off for an hour and a half decorating those cookies. Alex gave me his analysis of the North/South Korea conflict vis a vis the start of WW 1 ( differences and similarities, he could write a paper on it!). He seemed so comfortable to be out, you would never know it wasn’t something he does every day.

Anyway, I know, it was just a reprieve on the journey but I am so glad he has had a week of feeling relatively good and having some fun.  Thanks for sharing him for a few hours – it made my Christmas ( and Bud's!). xoxo Sue

Nicky, Alex, and Abby decorating gingerbread cookies.

Oh yeah, Alex had another visitor today!

The great Mason Raymond!  We first met Mason at a charity dinner several weeks ago and he and Darcy Hordichuk got their cell phones out and both called Alex who was supposed to be there but had to stay at home.

The Canucks do a lot of great community work, particularly with children and they should be commended for that.  Thank you, Mason and the Vancouver Canucks organization!

Alex and Mason Raymond

(and I'll fix the red-eye soon!)

Home Again ...

... and hopefully for more than a night this time.

Cynthia takes issue with the last entry. She says that she lived a different experience than the somewhat casual, relaxed one portrayed there, particularly leading up to the surgery.  There may be some truth to this.  It was pretty tough, and when someone is under anaesthetic and being operated on, it can be a little nerve wracking.  Particularly when you start to think  " ...what if it's not appendicitis, what if they find something else!"

Recovery times for standard appendectomies  are now about 12 to 24 hours so we had brief fantasies of getting home last night.  Alex had a fair bit of pain yesterday afternoon, which drugs eventually brought to heel but I was worried about his legs.  He still had a lot of pain when he tried to stand and walking wasn't quite possible.  As the night wore on, he got better at standing up beside his bed, but I wasn't sure.

There was a baby in the room next to us for both nights and this poor fellow was in great distress and cried frequently and loudly for what seemed like hours at a time.  Hard to be annoyed but it didn't make sleeping any easier.

This morning was great.  Alex woke up slowly but by 10 or so he was eating cereal and drinking well, making jokes and in a superb mood.  And he could walk! Actually, all round, he was the best he's been in probably the last three weeks. Most of the doctors stopped by, I think mostly out of curiosity -  "Seriously, Alex, you had appendicitis? Dude!"  

About 11 we found out we could go home but it took a couple of hours of messing around, then waiting for some drugs to go and  a few trips to the car to carry all our crap out (it's amazing what you accumulate in two days - Cynthia keeps bringing it - pillows, pajamas, crates of beer etc.) and it ended up being about four o'clock by the time we got home.

But home we are and .... aaaaaaaaaaaaah!

The appendectomy

Incredibly, it turned out that Alex did have appendicitis and had surgery last night.  It went very well and he was quite chipper just a couple of hours later.

Technology is remarkable and the operation was all done using lathroscopic surgery so it is not nearly as invasive and involved only three very tiny incisions.  Quite cool really.

The surgeons declined my offer to assist during the surgery.  And I wasn't even going to charge them.

Alex and I thought it would be neat to keep the appendix so we could show it to Nicky and then maybe dry it and make a Christmas tree ornament out of it.  No one else seemed to find this particularly funny and we were unable to obtain the tissue.

After a lot of pain and discomfort Friday night and most of Saturday, Alex has been mostly okay today.  We are hopeful, but not certain, of getting out tomorrow.  He has been getting morphine for the pain from the appendix and so we need to manage the withdrawal of that very carefully.

Appendicitis is not related to the leukemia.  Just another stroke of bad luck.  Fortunately (he said, grasping for positives) it happened when his neutrophil and platelet counts were very strong, it could have been a little tricky otherwise.

Thanks for all the emails and texts these past few days, it has been tough and that helps.  I am slowly getting back to everyone when I can.

FFS

We got home mid-day Thursday and it was so great!  Once we were settled in, I went to bed and drooled into a pillow, it was dark when I woke up.  Alex was up the whole time and doing really well.  He came downstairs to sit with everyone for dinner and while he only ate a little, it was just fantastic.

Friday was great too although my brain felt like mush.  Alex was great, eating and drinking and seemed to be handling coming off the morphine very well.  At about 5:30 though he threw up.  This was half an hour before his next dose was due and I put it down as probably being due to that, he had no temperature and seemed pretty good other than a quick barf.  He had the morphine and some other medications he takes regularly and seemed fine, but tired and wanted to sleep.  I sat with him, reading while he slept.

At 9:30 he woke up and was sick again.  As soon as I touched him I knew there was a problem, he was really hot.  38.7 the thermometer said.

So we he had to come back to Emerg last night.  We got there a little after 10 p.m. and by 3 a.m. we were back in the confines of "2B" where we are as I write this.

Alex 's bloodwork when we got to Emerg showed a sky high white blood cell count 21 or 22 or something and his neutrophils were 19.9.  This and a temperature are classic signs of an infection.  In the car on the ride in though Alex developed a pain in his low right side which intensified as time went on. This raised the real possibility of appendicitis so at 2 a.m. we were in the bloody xray room for pictures of his abdomen.  In the meantime he got some heavy duty IV antibiotics.

He also developed incredible pain in both calves, so painful that he couldn't walk for a while.  And Alex has a very high pain threshold.

The pain in his side has all but disappeared this morning and the calves are much, much better as well. The temperature disappeared and is normal.

We sit and await the doctors' verdict.

We're not happy.  My primary emotion today is anger which I am having to keep a tight grip on.

Alex just wants to go home and have a shower.

Home

We're home.  And the Leafs dropped two in a row over the last two nights.  The natural balance of the universe has been restored.

Wednesday Update

Alex has had a very rough 24 to 36 hours dealing withdrawal symptoms from the morphine.  We were up pretty much all night or at least every 30 to 45 minutes.  Miserable.  It was bad enough that at about noon today he went back on morphine with the goal of trying a more drawn out weaning process this time to, ideally, avoid the side effects.

It seems to be working so far, he has improved a fair bit this afternoon, but things change so fast sometimes we're not claiming victory yet.  We are getting to know the doctors all too well.

 It must be time to go home soon.  The local store never did have Becks and has run out of Pilsner Urquell.  Not sure how that happened.

Thanks for the emails, that really does help. 

A Very Disappointing Day

How quickly things turn sometimes.  Alex was so good yesterday, eating, drinking, laughing, almost normal.  Even saying he wanted to go to the Canucks game on Saturday.

Unfortunately since the early hours of this morning he has not been well at all.  The morphine was gradually reduced over the previous 36 hours but it looks like it has left him with some fairly significant withdrawal symptoms.  He's not eating or drinking, sweaty without a fever, nausea, the list goes on. Restlessness is another symptom and he didn't sleep much through the night.  A mild sedative has helped him sleep a bit this afternoon but he is very uncomfortable.

I made a mistake yesterday, getting too "up."  And I should know better. The trick is to stay level and not get too happy about the good days because otherwise you'll really crash on the bad days.

Thud.

I think our Wednesday release is unlikely now.

Thanks for the emails.

Guess Who Came to Visit?

Left to right: Jannik Hansen, Alex Bolduc, Manny Malhotra, Big Alex, Tanner Glass & Alex Burrows

The Canucks made their traditional Christmas visit to BC Children's Hospital today and some stopped in to Alex's room.  Brought a real smile to his face!  Classy organization, the kids love the visits.

Two More Nights?

Alex's counts continue to tick up, his neutrophils were 1.18 today and the mucositis is disappearing pretty quickly.  He's much happier and is eating and drinking a little.

His intravenous nutrition is being dialed down from 24 hours to twelve and then to six.  The morphine does is gradually being reduced as well as the pain from the mucositis recedes.  His mission now is to eat and drink!  That is easier said than done though, his system needs to get used to it again.

If all goes according to plan Alex will be released Wednesday, some 16 days after being admitted.  It's been a long, tough haul, that's for sure.

Two more nights.  We hope.

A Bounce?

The Bruins couldn't get it done last night despite the superb goaltending of Tim Thomas.  One has to give the Leafs credit, they kept working hard the whole game. (It kills me to write that!  But it's true.)

Alex's neutrophils are a bit higher today at 0.79.  Yesterday they were .44.  Being below 0.50 is key cut off level, below that one is "neutropenic" and extremely susceptible to infections.  "Normal" is 1.5 to 7.4 so he still has away to go, but this is the first meaningful increase we have seen  since being here and being above the 0.50 level is comforting.  In theory, if this isn't a head fake, progress should become a little quicker now. His platelets have rebounded strongly, sometimes a good leading indicator.

Alex was in pretty good spirits yesterday afternoon and evening and is the same this morning.

Day by day.

***********

Special thanks go out to Grandma Paddy's nurse  friend Judith who has now donated platelets twice and traveled considerable distances to do so.  Platelets are always in scarce supply and this is a great thing to do. 

Thank you Judith!

(Not exactly) The Twelve Days of Christmas

We've been here for twelve days now and for the most part they have been pretty miserable, I'm sorry to say.  The mucositis has diminished a bit but won't get better quickly until Alex's white blood cells recover - and that has been slow to happen. In the meantime, he still has a lot of pain in his throat and has been on morphine without interruption.   Until yesterday, he has been in bed pretty much the whole time and not terribly comfortable.

Cynthia is just over a bad cold and when you have a cold you are persona non grata in these parts so we felt even a little more cut off.

On Monday we moved back down to ward 2B from 3B and actually into the room we were in for nine days when Alex was first diagnosed back in July. We broke our record.  It seems like it has been a long time.  I was quite happy as this room is on an outside wall and has a window.  The room we were in previously was an interior room.  There's something nice about being able to know whether it's rainy or sunny, night or day by looking out the window.

Many weeks ago I had agreed to speak at the annual Crystal Ball which is the BC Childrens Hospital Foundation's annual gala fundraiser which took place this past Thursday.  I didn't much feel like it but we had bought a table a while back and a commitment is a commitment so we went.  The theme for the even, somewhat ironically I suppose, was "Celebrate."  Nurse M, who looked after Samantha when she was a newborn when Pam was first sick  and has become a friend of my mother's, came to stay with Alex for everyone's collective peace of mind.

I got through the speech okay and it was good to get out.  We had close friends at our table and it was great to see them but it was a bit weird to be "out"!  Sensory overload.  They raised a hair over a million dollars.  Not bad.

Alex has been getting nutrition intravenously since last Friday as he can't eat due to the pain from the mucositis.  His weight has come up a touch which is good but yesterday he ate almost a whole piece of chicken quesadilla and had a mug of warm milk.  That is the first solid food he has eaten in two weeks.  His platelets had jumped up too from about 99 on Thursday to 175 which is almost normal.  Neutrophils, the good white blood cells, were still very low at 0.4.  He was sitting up and quite chatty - he probably spoke more in half an hour yesterday evening than in the previous week to give you an idea how things have been.

Platelets often seem to lead the way as blood cells recover so I was a bit disappointed today when the neutraphil count was pretty much unchanged.  We need that to rebound.  But Alex looks better and is eating - sparsely, but eating and that is a big change, hopefully the rebound has finally begun.

The Habs won 3-1 this afternoon - we missed half the game not knowing it was on so early - and they looked good doing it.  PK who?  A sound thrashing of the Leafs by Boston would be nice. And then the Oil host St. Louis and will hopefully soften them up before they arrive in Vancouver for tomorrow's game.  That's our plan for today.

Patience required.  Go neutrophils!