What Would You Do If You Knew Too Much?

Today I have something really special for everyone.  The Aaron Outward family is growing and we have a new contributor.  I have been talking to Kristine for quite sometime now about adding her thoughts to the blog because she brings such an amazing perspective with all her life and work experiences. 

You have all experienced my deepest thoughts while experiencing one of the worst weekends of my life in the posts:

A Day That Will Live In Infamy - The Story Of My Acute Leukemia Diagnosis Part 1
A Second Day of Infamy - The Story Of My Acute Leukemia Diagnosis Part 2
A Third and Final Day of Infamy - The Story Of My Acute Leukemia Diagnosis Part 3

 

So what goes through the mind of someone on the outside looking in, and what would you do if you knew too much? 

 

So where do I begin?  I guess the best place is Facebook.  All of the sudden I saw all these messages being sent to Amy wishing her luck and love.  I knew something was definitely not right in her life and it made me wonder what the hell was going on? 

Luckily I was able to reach to one of our friends, Mollie, and she was able to fill me in on everything she knew; Aaron had been diagnosed with Acute Leukemia and was waiting at Trillium Hospital to be admitted to Princess Margaret Hospital.
 

Unlike most, finding this news out made me lose my mind.  Everything kicked into overdrive and I was being internally bombarded with questions.

 What do you mean 2 weeks without treatment?

Why did it take me so long to find out!

In the end all I could think was,

Blood disorders.....this is what I do for a living!

I was furious.  Though not at anyone in particular, more so at the system.

What was worse, I was also scared.  I mean really scared.  I'd seen Acute Leukemia way too many times and way too up close and personal. 

This was very overwhelming.  Of course I was crying. 

As the night progressed and it was time to go to bed, I tried to  pretend that  everything was normal......just a regular day.   As i lay awake watching the clock, all i could do was worry and cry about a person I've never even met, but more importantly for my friend, Amy.  As I lay in bed worrying and crying, I became fixated on one thought:

God how could this go well....

 

That morning I awoke and tried to continue along my normal routine.  I headed in to the Blood Disorder Unit at McMaster Hospital for my usual 7am Clinical Pharmacy Technician shift.  Thankfully we had early morning rounds that day which was lucky for me, I needed to discuss a personal matter with the Blood Disorder Team. 

I told the Team everything I knew about Aaron and they agreed to accept the transfer from Trillium to begin treatment.  With this knowledge in hand it was time to act.  This was not a situation to be taken lightly and things needed to get moving.

To start with, I knew I needed to start calling around and waking people up.  I started by calling Amy's parents; it was the only way I knew of to get Aaron's contact info. 

My conversation with Amy’s mother was very quick; I told her where I worked, that Aaron would die if he didn’t start treatment immediately, and that I had secured a transfer to McMaster’s Blood Disorder Unit for him.

With that phone call done and having successfully getting Aaron’s contact info, it was on to my next call; Aaron.

How do you call someone you don’t know and tell them that they are going to die if they don’t start treatment? 

I remember calling early in the morning and him answering the phone.  Before he could barely speak, my usual emotional  Kristine behaviour took over and I was  basically yelling at him.  I  told him who I was, where I worked and that he had Acute Leukemia.  I had to be firm and drove home two points,

 They call it ACUTE for a reason.

If you don't get treatment ASAP, you will die.

That's it.

I told him I was now only giving him two choices to proceed forward.  He needed to either have his care transferred to the McMaster Blood Disorder Unit or he was going to get in a cab and head to the PMH Emergency Room and demand that he be admitted that day.

 

I gave him a couple of tips of symptoms to present to the ER staff if he chose the second route.  As we ended our conversation I told him it was final and there were no other options.

 

Thankfully this sparked something and Aaron was transferred to PMH later that day.

It was now time to move my conversation to Amy.  She wanted to know what her and Aaron were in for. 

But how do you tell your friend how bad this would really be?

Knowing Amy, I knew that I couldn’t full out tell her what I see on a daily basis and how bad things could be.  I knew I needed to tell her some half truths.  She needed to realize that is was going to be a battle, but i needed to be aware of my words so I didn’t destroy her either.  I knew from my own life experiences that positivity really can do wonders. 

We needed to stay positive. 

I knew we had control over nothing else.

As Aaron was moved to PMH and was beginning his treatment protocol we began chatting over Facebook regularly.  I wanted to know how his treatment was going but also wanted to keep tabs on things; especially after how long the system took to get him started on his treatment protocol.

This was an interesting time.  At McMaster we were using the Dana Farber AL4 protocol which I had in front of me daily.  I always wanted to know what treatment protocol PMH was using, and when his treatments didn’t line up with what I thought they should I had to keep my cool and not throw up red flags.  I had to edit myself constantly.  I am not a physician, and did not want to alarm this man with things that I expect to be happening. 

 

I also wanted to keep my messages light and positive.  I wanted Amy and Aaron to both know that I was available if they had questions, but not to push things on them.   

I had to learn to distance myself.  This was not my story.  This was theirs.  I did keep sending short messages to see how things were going.

As the first week of Aaron’s protocol progressed we found out that he was in fact facing an even scarier time. He had a more uncommon Philadelphia Chromosome Positive(Ph+) Acute Lymphoblastic Leukemia. This was essentially another punch in the face. I knew that adult cases of Philadelphia Chromosome Positive Acute Lymphoblastic Leukemia (ALL Ph+) have a zero 5 year survival rate without a successful Bone Marrow Transplant.

To make matters worse I knew just how bad the road Aaron was about to travel really was. The ALL Ph+ protocol is the most brutal protocol you can ever imagine. I had such a terrible time with this news, and Aaron was a complete stranger to me. Thoughts kept streaming through my head

Could he afford the Gleevec?  That drug alone is like $4000/month. 

Was he going to be like the rest of my ALL patients and end up with blood clots?  Worse would he end up with pulmonary emboli like my one young patient who was in intensive care for over a month now.  It seemed like all my male patients getting the l-asparaginase were having this happen.   What if he ended up with febrile neutorpenia (developing a fever without having an immune system to fight it)?  Was the team at PMH educating them on what to do, and how important  immediate treatment was.?   How could I help Aaron and Amy understand what they were about to go through without scaring them?  What made it all worse is i've seen this all before way too many times.   

 

What if they couldn’t put him into remission?

What if they don't find a donor when it came time for transplant???

 

I knew too much. 

I decided that I needed to pull away a bit from them.  Not that they were being demanding in any way, but I couldn’t handle the stress of dealing with this at work everyday and then dealing with it on a personal level.  I also felt as if I was intruding on their lives.  I wanted them to know I would always be there for them when they needed me, but it was time for me to pull back and let the story unfold as it would. 

 

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