For those of you who have not heard yet, Jennifer Tuokko - who happens to be my fiance - was diagnosed with Leukemia on Boxing Day (Dec. 26 for our un-Canadian friends). This might sound like the end of the world, but really it's not as bad as it could have been. Here's the story...
About last Thursday (the 21st?) we started noticing some apparently random bruises on Jen's arms and legs. Our first guess was that she'd bumped into something either at work or at home, or that perhaps she had an abusive boyfriend (both were wrong, by the way). We thought it wasn't a big deal, and decided to wait a few days and see if they would just go away..... Christmas rolled around, and the bruises were still there too... but who goes to the Dr. on Christmas? Jen wouldn't let me take her... and she had to work at midnight until 8 am boxing day. So I went to pick her up after work.. brought her a mocha and a breakfast sandwich from Tim Horton's, and then we were off to go do some discount Christmas candy shopping.
We came around to discussing the bruises, of which she'd developed quite a few more on her arms and legs. She told me that one of her co-workers thought it might have been a blood virus, and another one had scolded her for not going to the emergency room already. That settled it for me, and against Jen's wishes (not to mention her need for a nap) we took her into the Camrose emergency room.
Soon she was been checked out by a Dr. who asked her a bunch of questions and did some bloodwork. A few minutes later we were told that Jen was being admitted because she had a platelette count of 10 (normal healthy blood usually has from at least 150 up to 450), which explained her bruises. The Dr. then proceded to waste the next thirty seconds of our lives telling us that there was one other thing that it could be (most of the thirty seconds was spend pronouncing the disorder), but Jen didn't have that - thanks doc.. She then told us that it was very likely something to do with Jen's bone marrow, and that Jen would have to go to Edmonton's University Hospital for me testing and treatment.
There was nothing else to be done at the hospital in Camrose, so I left to pack up some of Jen's effects to bring out to Edmonton for her. I called her parents and tried to explain what was going on without making them panic. They seemed alright on the phone, but obviously shaken. This was about 11 in the morning for them. They immediately called the hospital, spoke with the Dr. - who told them it was a good idea to come out asap - and then booked the next flight to Edmonton. By 11:30 BC time they had purchased the last two tickets on the plane. They were set to arrive at 4:25 pm AB time, at which point I picked them up and took them to the U of A. Jen got taken to Edmonton via Ambulance at about 1pm. Between then and picking up her parents at the airport I mostly sat around Camrose feeling useless and scared.
So, it's 5:30, I've just arrived at the Emergency Room in the U of A with Jen's parents... a brief hold-up in security and a short walk later, we're in Jen's room where she'd been hooked up to all manner of medical monitoring equipment. She'd been too impatient/bored to wait for us to get there, so she'd asked the Dr. what was happening to her. The Dr. then told her that she had leukemia, and probably a lot of other things too, but they sort of got lost in the shock. When we got there, Jen had already had about an hour to herself to sort out her feelings, and decided it would be best to just tell us straight out rather than try to tip-toe around it. There was a lot of crying and general upset-ness for a few minutes and then we were joined by the hematologist (blood doctor in lay man's terms). This is where our story takes a turn for the better.
First things first, the entire staff of nurses and doctors has been fantastic for Jen and for us. They have been very attentive, caring, honest, and hopeful, and it has been a huge relief to have such a great staff. Anyways.. the doctor told us that Jen did in fact have leukemia, and they were 99.9% sure of the particular type, and that if they were correct (which it turned out a bit later they were) that it was one of the 'best' types of leukemia to have. I'll get into the details of the disease a bit later, but this type has an 80-90% cure rate... CURE, not survival. It also has some of the most sophisticated and effective medications and chemotherapy available to treat it. Her Dr. said that if had to choose a leukemia to have, this would be his second choice (the first choice being on that can be treated by pills at home with little downtime or side-effects at all).
Anyways, her specific diagnoses is Acute Promyelocytic Leukemia or APL... I'll refer to it as APL from now on. Click the link to read the Wikipedia article about it... I'll summarize it for you here. APL belongs to the Acute Myelogenous Leukemia (AML). If you only read one of those pages, read the APL one as it is more specific as to what Jen would go through... if you're really curious/bored read both.
So after the Dr. told us what her diagnoses most likely was, what they were going to be doing, and all of that good stuff, they immediately started her on their wonder-drug, ATRA (All-Trans Retinoic Acid).
What APL does is generates a large amount of blood cells that do not mature into red or white blood cells or plateletes. These immature cells eventually start to take over the blood stream and bone marrow, and if left untreated create a blood supply that is compeletely useless, and very likely fatal if left untreated. Scary stuff if you don't know what ATRA does. ATRA is a drug taken oraly a few times a day (I really can't remember how often, sorry) and what it does is it forces those immature cells to mature. This drug is so effective that taken alone it normally will suppress the cancerous cells to a nearly undetectable amount, and taken with chemotherapy (which I do not have the specific drug's name, sorry.. I'll find it for the next blog) it will very often completely destroy all of the affected cells. The chemotherapy targets fast-growing cells, which include the leukemia (obviously) and also the hair (which answers the question - yes, Jen will lose her hair, no, she's not all that upset about it), and the stomach lining (which is why patients of chemotherapy typically experience a fair amount of nausea, vomitting, and loss of appetite). I'm a little hazy about exactly how often she will be taking her chemotherapy, but I believe that she takes it for three days at a time, and there are a few days of a break between cycles. I believe she is also on the ATRA the entire time just to keep any remaining leukemia cells well under control.
There is a possible complication that the APL can cause called Disseminated Intravascular Coagulation (DIC). What DIC basically means for Jen with her APL is that since she has fewer mature blood cells (plateletes specifically) her blood will not clot and coagulat properly, so there is the risk of large hemorrhages internally that could cause large amounts of blood loss. But with each passing day on ATRA the risk is reduced because her platelete counts will increase. As of yesterday morning her plateletes had double from her level when she was admitted, from 13 to 26. The Dr. said that a safe number for her to be able to clot and stop up bleeding is anything over 30, but ideally they'd like her to be back to the normal count of 150 or more. Her last blood work showed that all of her clotting factors (plateletes and fibrinogen... although I have no idea what fibrinogen does) are getting better and better... a safe level for fibrinogen is 1.0 or higher.. Jen had 0.9 at admission, and 1.8 the last time I heard... so things are looking very good.
I'm pretty sure that I've covered all of the technical/medical stuff that I wanted to.. if you still have technical questions email them to me (address at the bottom) and I will try and answer them in the next blog.
You're probably all wondering how Jen is doing through all of this. For starters, she's very tired. She started the whole hospital process on Dec 26 at about 10:30 in the morning, after working a night shift... she really hasn't slept well since the night before Christmas... they put her through a lot of tests and measurements and various procedures the first few days, lots of IVs and bloodwork, as well as a bone-marrow biopsy (which is supposed to be horrible, but Jen was a real trooper through it.. I was lucky enough to be allowed to be in the room with her and hold her hand... she hardly let out a peep). She started on the ATRA on Tuesday night (26th) and that often gives her headaches, which they give her tylenol for, which makes her nauseous, and they've given her morphene a few times instead of tylenol when she's felt particularly poorly. It's quite ironic how other than her bruises she felt fine before being admitted to the hospital, and now that she's under treatment she's feeling ill.
Jen was scared and shocked on the 26th when she was diagnosed, and we all had a chance to sit and cry and be scared together, but Jen and her family (as well as myself and my family) have been feeling very optimistic and have very high hopes and assurances that Jen is going to pull through with flying colors. She told me last night that she isn't scared anymore, and she's basically just resolving herself to go through the chemo and beat this disease into the ground. She's been her regular sweet self all throughout her various treatments and drugs (between mini naps induced by Benadryl she was worried about how comfortable I would be in her room with her... but that's Jen for you).
Jen's treatments have gone very well.. the doctors have said that she has been a textbook example of how the treatments should be working, and she's in the high end of the successful side of it. They told us that she'd be in the hospital for about a month, and then she would have some further treatments as an outpatient for 2-3 months I believe, and then less frequent visits and checkups for the next two years or so just to keep an eye on it.
For anyone who might have been thinking about sending flowers - DON'T. The ward that Jen is staying in has ultra-tight rules regulating anything that could potentially cause a fungul infection. In short, no flowers, no fresh fruit, and no fresh vegetables (but who sends vegetables anyways?) If you'd like to plan a visit, please phone or email us ahead of time so we can make sure she's available and feeling up to it. The phone number for her ward is 1-780-407-6132. The nurse will take a message and either Jen's parents or I will get back to you. You can get a hold of me by email at colinzimmerman@gmail.com. Jen won't have internet access unless we can find somewhere in the hospital with a Wi-Fi hotspot... so if you'd like to have a message sent straight to Jen you can email me and use the topic "For Jen" and I'll pass it on to her.
I hope that was everything.... if I forgot anything or if you have more questions email me and I'll try to address them in the next post.
Please keep praying for Jen, and keep her in your thoughts. Thank you all for your concern and for your love for Jen. God bless you,
-Colin Zimmerman
