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:
- 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.
- Keep on supporting the “cancer cause,” - keep those bike legs going because we’re going to need them again this year.
- 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.
