I personally always hate it when people beat around the bush with bad news, so I’ll just cut to the chase and then fill in the details. At the start of May, I was diagnosed with Acute Myeloid Leukemia (AML).

From the very beginning of all of this, I decided that I wanted to deal with this privately, with the exception of family and a handful of friends. However, a couple things have changed to make me feel like I need to share.

In January last year my health started to go downhill (abdominal pain, intermittent gastrointestinal (GI) bleeding and exhaustion). My hemoglobin (the stuff that transports oxygen in your blood) was 116 when it should be about 150-160 and based on my symptoms and family history of GI issues my doctor thought it was likely Crohn’s disease or colitis.

The next few months I had several tests and appointments to diagnose the exact issue and then near the end of April, my doctor called me out of the blue and told me that my hemoglobin crashed to 62 out of nowhere and I needed to go to the hospital immediately and get an emergency blood transfusion since a hemoglobin level below 65 is potentially life threatening. So, I go to the hospital and was given 2 units of blood to bring me to a stable level.

After the transfusions, the ER doctor tells me that the GI issues the doctors previously thought were likely couldn’t cause what just happened and I need to see a hematologist ASAP.

I get an emergency appointment with a hematologist and at that appointment, long story short, they took 19 vials of blood for a bunch of tests and then later that day the hematologist told me “the results look near certainly like leukemia and I’m very worried. I think you need a bone marrow biopsy and I think you need one immediately. I’m going to call Princess Margaret Cancer Centre (PMCC) and get you in ASAP because if this is what I think it is, you’re going to need to start treatment immediately.”

Up until this point, I had spent the last 4-5 months thinking this is some GI thing and any day now they’ll figure out exactly what it is, put me on some meds and I’ll be all good and back to normal in no time. Now, suddenly, I’m searching “leukemia” and everything related and trying to figure out what all this means exactly.

There are 4 main types of leukemia – ALL, AML, CLL and CML and the survival rates seem to be around 70-90% for ALL, CLL and CML but only around 20-30% for AML. AML is far less common in those under 60 and very rare in those under 45. So, I’m thinking “AML is rare under 45 and I’m not even 35 yet, so that looks pretty damn good like this won’t be AML”. It’s about a 1 in 300,000 chance that a person under 35 is diagnosed with AML.

The very next morning I’m at PMCC at 9 am for a bone marrow biopsy.

The next day the hematologist-oncologist comes to see me with the results and all I’m thinking is “don’t say AML. Don’t say AML”. I don’t think I even really heard anything he said until “it’s AML” and at that moment I was just thinking, “You’ve got to be kidding me”. The doctor goes on to say there are a number of subtypes of AML and the subtypes are classified as either favourable, intermediate or unfavourable based on their survival rate compared to the AML average. The subtype requires complex cytogenetic testing that will take about a week to complete. In the meantime, they need to run a ton of tests to 1) see the current condition of my heart, lungs, kidneys, liver, etc. so they know they can monitor how much damage chemo is doing to any of them. 2) make sure I don’t have any viral or bacterial infection, since the chemo treatment is going to make any infection potentially life threating for me. 3) just to make things more complicated, find out where the hell this GI bleed is coming from since chemo is going to wipe out my platelets, making any GI bleed life threatening.

A week later, the hematologist-oncologist enters my room and I pull up the list of the AML subtypes. It looks like only about 12-13% of the subtypes are classified as “unfavourable”, so once again the odds are strongly in my favour and I’m trying to stay positive. So, the doctor starts talking and again I’m just waiting to hear the doctor say the name of one of the subtypes and I’m really not hearing much of anything else. The doctor says “AML-MRC with a chromosome 5 abnormality” and I felt like I got hit by a truck when I saw it near the bottom of the list as the second most unfavourable subtype. I wish I could say I was imbued with some sort of courage and determination to overcome but the truth is all I thought was “well, I’m fucked”. That was May 10th, 3 days before my 35th birthday, and it seemed pretty damn likely it would be my last.

This specific sub-type of AML is very aggressive, which makes the treatment course more challenging. In short, a successful bone marrow transplant is the only likely chance of survival. For a transplant to be possible, a bone marrow donor match is needed. Furthermore, for a transplant to be possible, I need my chemo treatment to put my leukemia into total remission. Then even after a transplant, there is risk of fatal graft vs host disease (GVHD) where the transplanted bone marrow attacks my body. Then there is also the risk of graft failure. Then there is a high risk of fatal infection since the treatment will completely eliminate my immune system. If all that is not enough, even if all goes well there is about 40% chance of relapse following even a successful transplant.

My doctor starts talking treatment options. The treatment believed to give me my best fighting chance is a very new regiment that has next to no data for AML patients in my age range. However, based the results they’ve observed in older patient populations, they believe it should somewhat improve survival odds in patients my age as well. To put it in perspective how new the treatment is, when I asked what the data has shown for patients in my age demographic, my doctor replied “there is no data. You ARE the data”. Unfortunately, because it is a brand new treatment, there are no programs that will currently cover the nearly $30,000 cost. So, my options are 1) go with the less ideal treatment for a disease that has a poor survival rate to begin with or 2) go out of pocket to cover the cost of the treatment, which my doctors say will be around $30,000. And that is just for the cost of the chemo drugs alone and doesn’t include the cost of me not being able to work for at least a year if all goes well, Gabby not working for at least multiple months, the cost of driving back and forth from Orillia to Toronto, parking, hotel stays, etc.

Fortunately, although this definitely a major financial hit to Gabby and I, we are lucky to be in a position where we, with the loving support of our families, will be able to financially weather this storm. On the other hand, I’ve been hit with the hard reality that not everyone is so fortunate.

When I was admitted to PMCC, I was given a bed in a hospital room shared with one other patient. Given the inherent lack of privacy in a shared room, it was impossible not to overhear my roommates conversations, such as conversations between my roommate and the social worker who was trying to help him find a way to pay for his treatment to little avail. I felt like I had to do something to try to help so I asked if he would be ok with me sharing his situation in order to try to help and he agreed. I am very sad to say that his battle ended in July. However, he had a wife and young daughter and their battle is far from over. I couldn’t even imagine having to go through what they’ve been through and then having to continue on without their husband and father. And sadly, the financial burdens of losing him in addition to the costs for his treatment, which they still have to pay, can only make their nightmare that much worse.

So, the reason I’m sharing this is 4-fold.

1) To ask that any of you who are able, contribute what you can in order to lighten their financial burden. I understand these are tough times for a lot of people. However, if you are in a position fortunate enough to be able, anything you can give would make a world of difference.

2) I am lucky that my brother, Adam, was a bone marrow match with me and was able to donate. Unfortunately, despite having a donor registry that spans the globe, approximately 25% of patients in need of a bone marrow transplant have no donor match at all and many more have a donor who is only a partial match. So please, if you are able, join the donor registry. All it takes is a swab of your mouth and you may literally save the life of someone currently laying in a hospital bed with no chance of survival. https://www.blood.ca/en/stemcells/donating-stemcells/stemcell-eligibility-and-registration

3) Please donate blood if you are able. So far throughout the course of my treatment, I have had approximately a dozen blood transfusions. Without the blood donations of many selfless people, my battle with leukemia would have come to an end many months ago when I needed my first transfusion. I could never fully express my gratitude to those who have given and given me the chance to stay in the fight.

4) Please share this so it can reach as many people as possible.

Although the battle so far has been far from easy is far from over, I am truly lucky to have gotten this far when most don’t and I never would have gotten this far if I was fighting alone.

From the bottom of my heart, thank you to all of you who have taken the time to read this and anyone who has already or is able to help in any way possible. I quite literally wouldn’t still be here without you.