Long day today

9 hours at the hospital but it all went extremely well. More later, need a beer now and to catch the last few rays on my pate. Head won't tan!

Good Preliminary Results ...

Supposedly, I can post something remotely by emailing this from my blackberry to the blog. Let's see.

I got an email from Alex's primary doctor late Friday afternoon with some preliminary results from the bone marrow biopsy last Wednesday. The results were quite good actually, the nasty chemicals appear to be doing their job! It's what we expected to hear but was reassuring nonetheless. This week we'll find out more details when results are back from the U.S.

No News is Good News ... (and give platelets!)

Yes, John, you're right.

Well most of the time no news is good news, I suppose sometimes it's not but in our case over the last week there has just been ... no news!

Today is/was Wednesday. Wednesdays are big days for us, we always have a treatment or procedure on a Wednesday. Wednesdays mark the beginning of the previous phase and the start of a new one.  Today marked the last day of the "induction phase." This is the aggressive treatment to try and induce the body into remission in short order.

We were at Children's hospital bright and early this morning for a post-induction bone marrow biopsy. And, oh, while we have you somewhat sedated, we're going to stick a needle in your spine again and squirt in another bit of poison. That okay? Great! Nothing wrong there but we always do that just in case!

Day 29 today. The first nine days when Alex was in the hospital were reasonably hellish as they hit one pretty hard with treatments. The last three weeks have been pretty manageable. We have gone in every ... Wednesday ... and Alex has received two different types of chemo. We get there at eight in the morning or so, they take some blood to analyze first and see if one needs a transfusion or anything. The chemo was administered quite quickly, in a few minutes, we wait around for a while to see the docs and then go home.

Today also marks the last day, for quite a while at least, of taking a steroid (Prednisone) which I noted earlier can have the side effect of being a big downer (particularly in tweens and teens) and also really distorts one's facial features, making the face very round, puffy and a bit elongated. Weird stuff, man, this cancer gig ain't easy. Hopefully these side effects start to diminish now.

We won't have full results from today's biopsy for several days. The people here will do their analysis but as Alex (like most ALL patients in North America) is part of a big study, some of the sample will be sent for further analysis. To a place somewhere in Texas. There they will take things to a molecular level and see if anything untoward shows up that is not detected by conventional means.

As one phase ends, another begins. This one is called the consolidation phase.  If we get the results we expect to (and if we don't it's pretty similar, they just turn it up to 11 for you Spinal Tap fans - in fact there are spinal taps weekly, regardless quite literally!) we will putting a lot more klicks on the odometer over the next two months.

Next Wednesday, Alex will get hit with some pretty heavy duty chemo cocktails. One of the drugs is quite hard on the kidneys so they give one fluids via an IV for an hour or more ahead of time and for a few hours afterwards (fortunately this is only weekly with some time off now and then). We'll be there for eight hours or so. I know this drug from a previous life and it's a tedious process. He will also have two other drugs, one intraevenously and the other is a pill (a pill he will take for the next three years actually).  Thursday through Saturday we will be there every day for the second iv drug, then a few days off and then repeat. Basically we will be going to the hospital daily four or five days a week. Iif things go well! If the don't, one is admitted.

All of these drugs tend to make one very sick. And they make your blood counts deteriorate to a point where one needs blood transfusions and is very susceptible to infections. Lots of fun.

You don't know what to expect until you're in it. Sometimes people tolerate it quite well, sometimes it hits hard. It is cumulative and gets tougher as time goes on. Often, coming off the prednisone and having the first few treatments, patients start to think, hey, this isn't so bad and then WHAM-O, they're on the floor as the second wave of starts to hit home.


But for now he has a week off. Ah!

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J, who is a rock star nurse (at VGH not Childrens) and is recovering from her 60k walk ( atta girl!) this past weekend for the Shoppers Drugmart Weekend to end Women's Cancers benefiting the BC Cancer Foundation (well done all, $2.4 million raised) wrote to remind me of something I already knew but sort of forgot.

Under the heading "what can you do?" I mentioned simply giving blood. J very correctly points out that for leukemia, lymphoma and other similar cancers (and a bunch of other reasons), giving platelets instead of whole blood is even more meaningful and I am kicking myself for forgetting that. It's a little more time consuming for the donor but is an invaluable help because platelets are always in short supply and they spoil very quickly. It's rare that things are delayed by blood not being available but platelets not being available often lead to delays, dangerous delays - we need platelets please!! Thanks.

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The 2011 Ride to Conquer Cancer is already cranking up and the website is alive and running. This is a great event. I have done our local Vancouver to Seattle ride both years and this year also did the Toronto - Niagara Ride. The Toronto Ride sold out in November last year so sign up early if you want to do it. Vancouver sold out in, I don't remember, April maybe, but the spots will go quickly this year I think - because it's a ton of fun! Despite us being vastly outnumbered, PH&N intend to reclaim the top fund raising title from Team Finn this year. Visit www.conquercancer.ca My page isn't quite finished yet but have a look. There are also rides in Montreal and Calgary.

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Rumour Department: there might be another bike ride in 2011, this one benefiting the Oncology department at BC Childrens. It's not me organizing it! I'll participate if I can, for sure, but I'm not on the inside and it might be beyond me. Sounds like a pretty intense ride with accordingly restricted numbers, not the big we-can-all-do-it R2CC ride. From what I understand, I don't see them competing with each other. Hope not. I hear it is tentatively scheduled for the first weekend of June.

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Head Shaving Friday August 6th

One of the side effects of many chemotherapy drugs of course is that one loses one's hair.  It's no fun to watch it come out in clumps here and there and a better course of action is to take preemptive measures and shave it off.

Alex's hair wasn't due to fall out for a few more days but a couple of his friends wanted to do it with him so before a bunch of people disappeared on holidays this week, we decided to shave some heads last Friday.  I think only three or four were on the initial dance card but eventually about fifteen people ending up shaving.

Since Rob was going to be one of our barbers, he went first ...

One by one, we fell ...

... regardless of what level of black belt you had or if you were a little hesitant at first ...

Any excuse for a party


Until we had what Debbie called:

TEAM ALEX!!

Starting a Blog About Alex

I am writing this mainly for selfish purposes. I am trying to phase back into work a bit after being away for a couple of weeks and so many people want to know what’s going on. It’s not that I don’t want to talk about or think about it (I rarely am not thinking about it) but it is so repetitious to keep going over the same ground and answering the same questions over and over and over again. And, frankly, it’s hard.

In many ways this is the most private thing someone can go through. It’s very difficult. But people, at work and outside work, want to know and they’re good people, the best people, and I know they genuinely care. Some of them hesitate to ask, some don’t. But I can’t keep going over it all over and over again so I want to publish the basics here and I will post updates reasonably regularly or if anything changes.

Here’s what’s going on, I’ll try and address the most common questions:

• On Monday, July 19th Alex was diagnosed with acute lymphoblastic leukemia, commonly known as ALL, a common form of leukemia in children. (There’s all kinds of information about ALL on the internet. Some of it is even true. The write-up in Wikipedia seems reasonably good, but I can’t vouch for everything and there’s a lot of technical stuff that I don’t understand and don’t intend to delve into.) We received results from some blood work that day and Alex was admitted to hospital that same afternoon and received his first treatment the following day in conjuction with a lumbar puncture (spinal tap) to see if there was any disease in the spinal fluid. (Gratefully, there wasn’t.)

• Alex was in hospital for nine days and we got home late Wednesday July 28th. The first five or six days were not nice at all. Since then he has been treated on an outpatient basis once a week at the hospital. He has one treatment left, tomorrow actually, to complete the first phase of treatment called the induction phase.

• His prognosis is good but treatments take a long time. Something like three years in total. That’s a long time for anyone, but particularly when you’re twelve. The first six months is (if things go to plan, which they should) the most intense and of that the induction phase in the first month might be the hardest. The others are no picnic though - in fact I think it might be like saying the third stage of the Tour de France is the most difficult individual stage.  While that might be true, there still 18 other stages left to do!. The two and half years afterwards is theoretically easier and ideally one can lead a more normal life. It involves primarily oral medication and far less frequent visits to the hospital.

• The purpose of the induction phase is to induce the leukemia into remission. My analogy is that you try and wipe out the armies in the first month and spend the next 35 initially going after the guerrillas and snipers in the trees and making sure they don’t come back.

• They did a bone marrow biopsy the day after Alex was first admitted and a second one after the first week of treatment. They will do a third one after the induction phase, on August 18th. The second biopsy showed he was responding to treatment according to plan. This next one helps to determine and optimize the next round of treatments. I will update that when we know the details.

• Alex’s mood is pretty good but this is hard for sure. He is taking a steroid called prednisone and while this does many wonderful things it can also make you a little up and down emotionally or a little up and a lot down and sideways. It also makes your face a bit round or puffy but that goes away when you stop taking it. He stops taking this drug on August 17th and I hope that will make him feel somewhat better. One of the good side effects is that it makes you hungry and the black lab has returned to the dinner table.

• Yes, he is going to lose his hair. I’ll write more about that in another entry. It’s a rotten thing to go through but we tried to have some fun with it.

• We are still hopeful of moving to London. One of our doctors just moved here from the UK and we know from him and others that the protocol used there is pretty identical to the one used here. A rough plan is that we are trying to coordinate is to move in January in time for the beginning of school. Alex and I might have to follow a couple of weeks after that but I don’t expect we’ll know about moving until we know. It’s still very early days and our main goal, aside from Alex’s health obviously, is to keep things flexible. But so much is already in place (a rented house, schools, we bought a truck etc.), that it would be shame to abandon it all too quickly and find out that we could have go a few months later.

• Yes, my mom, aka Patricia aka Grandma Paddy was here for about two weeks but has returned to Kingston.  It was great having her, she was a huge help and brings so much warmth and cheer.  She is, she says, on an elastic and can snap back here anytime.

• Everything you have heard about BC Children’s Hospital is true. It is one of the best and the word professional comes to mind over and over again. The doctors and nurses are outstanding. Clearly their success is no accident. They have a process! And it seems pretty effective. From the time we went to Emergency to a simple outpatient visit last week, everything works properly and is extremely well coordinated and organized. We can’t imagine getting better care.

• The rest of us are okay to good. We were devastated by the news and while all our lives were turned upside down in a single afternoon, again, a lot of things that used to seem important don’t matter as much. For example the idea of switching schools midyear would have been unthinkable but now Cynthia, all the kids and I don’t see it as a big deal. I am very proud of all of them not because of school but just in the way everyone has handled the situation.

•  Everyone asks what they can do. I think we all feel a bit powerless and there is a certain reality to that, unfortunately. Here’s a couple of things that sprang to mind though:

1. Give blood. Alex had a couple of transfusions while he was in the hospital. Yvonne has done a great job of organizing this in our Vancouver office.
2. Keep on supporting the “cancer cause,” - keep those bike legs going because we’re going to need them again this year.
3. Continue to not deliver lasagna to the house! Thank you!

• I work with the finest people on the planet. Thank you for all the tremendous support. There aren’t any places like this.

I think that’s about it for now. This is surprisingly hard to write. I’m still me, and I hope this isn’t indulgent on my part, but I can’t keep going over the same ground all the time! I know it’s not the same as a personal conversation but ... deal with it!

Thanks.