May 1, 2019

One Decision. Two Decision.

*You cannot un-see these pictures.  Please proceed with caution.*

Journal Entry #3

On April 2, my husband and I travelled to the 13thfloor of Toronto General Hospital (UHN) to the Tropical Disease Unit.  Travel downtown to UHN takes us about 2 hours from home.  We didn’t wait long before the process started.  An initial intake with the coordinator, another intake, interview with another Doctor, the last 15 years of travel history (man! Am I ever lucky/fortunate/blessed to travel so much!), to pictures, measurements and a full general workup of tests.  Over 2.5 hours of screening, and then we met Dr. Bogglid and her team of doctors (and 4thyear dermatological students) began their assessment, review of the test results and then again collecting more samples and “milking” of the wounds for breakdown of the exact subspecies of protozoa and taking further bloodwork for a baseline on the health of my immune system, liver and kidney function and more. The earlier results confirmed Leishmaniasis, and that indeed it is the Vianna strand.  However, the Vianna strand has subspecies that prefer different areas of the body, so it is important that we discover these so that treatment can be precise and also so that I can be monitored in the future in case of re-occurrence.  All in all – we were in for 5 hours of investigation with a team of doctors.

Dr. Bogglid was very patient and calm as she explained the treatment options and the process to begin treatment. I would begin using Flamazine immediately (often used for burn victims). The rest of the information came fast and was overwhelming, I was glad that my husband was there too for support.  Unfortunately, there isn’t an appropriate treatment for Leishmaniasis available in Canada.  The treatment offered in Central America, Africa and other affected areas is substandard, and carry high risks.  This left us with two choices.

  1. IV Therapy. Daily admittance to UHN, full day of monitoring and a 4 hour infusion. Once/day for 7 days, and once/week for 5-7 weeks, to the tune of $70-80,000.
  2. Oral Therapy (Miltefosine), twice daily for 28 days, administered at home, starting at $7000.

We chose the Miltefosine, not only for financial reasons, but also for the logistical implications of traveling or finding somewhere to stay in Toronto for extended periods of time while feeling crappy. There was a catch though.  Both treatments are not recognized by our health care system, and would require special permission from the Ministry of Health Canada to permit us access and possession of the drug.  These forms and appeal began immediately. Because the drug isn’t available in Canada, it doesn’t have a DIN number, so it is likely that our health benefits will not cover the medication.  We will do more research on this and hope to find an exception.

Insert second big decision here.

I was due to leave on Mission to Guatemala on April 5.  As the team lead coordinator, it was a huge decision to make.  Go or not go. The team of doctors and I discussed the pros and cons, and understood the weight of the risk for me and for the team, and after contemplating the implications, they patiently and intricately showed me proper wound care, protection and sterilization to prevent secondary infection while traveling.  We were due to live and work in a remote area, use rainwater collection for bathing and washing and some of the work sites although at a higher altitude in the volcano region can be dirty and pose risk.  A year of planning, volunteering, coordinating, preparing for this mission, did not make this an easy decision.  It is challenging deciphering between the head and the heart when making a decision like this.  Even with deciding to go and follow through with my team, I was uncertain that that was the right thing to do.  Internally, I waivered…my heart really wanted to go.  My head, and all the external voices of family and friends treaded lightly, wanting to know if I was “sure”.

So many things to contemplate and talk about.  So many feelings as the reality settled in.  But with only 2 days until departure for Guatemala, only the necessities were addressed.  I stocked up on wound care items, practiced what I was taught and prepared mentally for the trip ahead.  I guess this is a good time to tell you that I haven’t been able to get my foot in a shoe for about a month now.  The last shoe I wore was my curling shoe on March 29thwhile I assisted a local school elective teaching children how to curl.  I now can only wear flats, that just cup my toes and my heel.

I am going to skip the mission now, but if you would like to read about the work that we did there, I would encourage you to read our journey on our team blog at 

I was diligent in my wound care, I double bandaged and waterproofed all three wounds.  The team was wonderful and always looking out for my safety and making sure I didn’t blow any bandages.  They were wonderfully supportive and helpful during the entire 10 day mission trip.

I did get word when away on Mission, that the Ministry of Health approved our request to access the drug and bring it to Canada.  This was awesome news!  And I was hopeful that the drug would be awaiting my arrival home the following week.

xo Juli

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