Hero Lennox

WHO IS TEAM HERO LENNOX

My mom will be explaining my story for me as I am only 6 1/2 years old. 

I was diagnosed with a rare immune disease call Langerhans Cell Histiocytosis (LCH) just after I turned 3.  I did 4 rounds of IV chemotherapy from January 2021 to May 2021.  I was given the “all clear” from my MRI scan by my wonderful doctors and nurses in May 2021. 

My immune disease was no longer growing and had not spread anywhere else than in my skull.  Just before my fourth birthday, my mom noticed I was drinking a lot of fluids and peeing shortly thereafter, especially when I would play sports or do anything active.  We told our team at Children’s, and they requested we do another MRI scan. The MRI scan came back showing a damaged pituitary gland, which resulted in the reoccurrence of LCH still being present in my skull.  I was then diagnosed with diabetes insipidus. It is a rare form of diabetes that affects the hormone which gets released from your brain, telling your kidneys that you need to pee or drink. Mine, however, does not work anymore, and will never work. There was a 10% chance of reactivation with my immune disease.  I take pills three times a day to help my body produce the hormone, since my pituitary gland cannot naturally produce the hormone anymore, and never will.  I was diagnosed after a 17-hour water deprivation test in November 2021, and started taking the hormone in January 2022. I did two types of IV chemotherapy.  One was administered through the port in my chest, and the other one was given to me by my mom through my thigh muscle 4 days consecutively per week, with treatment for 6 months.  This chemo was much more invasive and caused me to be quite sick.  Another MRI was ordered in May 2022 with results showing there were erosions in my skull.  We’re slowly but surely closing in on this, with positive signs showing that the chemo has really worked.  May 2022 to now I have been taking an oral pill form of chemotherapy, every night before I go to bed and will be for the next year and a half.

My parents and doctors have explained to me that the reason I am going to the hospital is to get superpowers to make me faster and stronger.  I don’t truly know what is happening or what has happened so far.  I am too young to fully understand, and my family doesn’t want me to have anxiety going into the hospital for all the ongoing appointments.

Update on Lennox:  I had my MRI Scan done December 15th letting us know everything looked amazing and that I was almost done my treatment.    I was on oral chemotherapy straight for 1 ½ years.  December 21, 2023, was my last evening receiving oval chemo.  We celebrated the next day by missing the last day of school before Christmas break, to go to the Vancouver Aquarium.  I was nominated to be a part of Make A Wish.  My wish was to meet some superheroes like myself.  Make A Wish set up an amazing trip to Disney World in Florida.  We all had a fantastic time.  Two weeks later, I went into the hospital March 21st to have my port removed.  It had been in my body from December 14, 2020, to March 21, 2024.  That was a huge moment for me and my family.    I will still be going to the oncology inpatient clinic every 3 months for blood work and check ups. I will still be doing MRI Scans every 6 months to keep a close eye on things, to make sure there is no changes.  My mom will still be watching me like a hawk, to make sure that I do not have any new symptoms of any kind.  As I get bigger my DI medication might change with the dosage, which we will work the Endocinology Doctor and Nurses as well. This is the medication I will be on for the rest of my life.  As my pituitary gland no longer works, which was the damage of the LCH coming back in fall of 2022.

Our family is so grateful for the love and support we have received from BC Children’s Hospital.  We would love to be able to give back as much as we can.  Truly blessed for the phenomenal care and support Lennox has received from all the doctors, nurses, scan techs and all the staff at BCCH.    If you can give anything, we would be greatly honoured with your support and generosity.