Lennox Blair

This is My story.

Monday 20th Apr

My mom will be explaining my story for me as I am only 8 1/2years old. 

 

I was diagnosed with a rare immune disease called 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 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 with a damaged pituitary gland, which resulted in the recurrence of LCH, still being present in my skull.  I was then diagnosed with diabetes insipidus. It is a rare diabetes that affects the hormone that gets released from your brain to tell 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, but my pituitary gland cannot naturally produce the hormone anymore and will never.  I was diagnosed after a 17-hour water deprivation test in November 2021, and started in January 2022. I did two types of IV chemotherapy, one was administered through my port in my chest, and the other one was given to me by my mom through my thigh muscle, 4 days consecutively port 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 is really working. From 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 my doctors have explained to me that the reason I am going to the hospital is to get superpowers to make me faster and stronger. But I don’t truly know what is happening or what has happened quite yet.  As I am too young to understand, and we as a family don’t want him to have anxiety going into the hospital for all our ongoing appointments.

UPDATE on Lennox: March 21st marks two years since completing chemotherapy.

Today, I am a healthy, energetic, and full-of-life 8½-year-old boy. I enjoy all the things a typical kid my age loves to do, and nothing has held me back from living life to the fullest.

Because I was so young during my treatment, I don’t remember most of what I went through. My mom now gently shares parts of my medical journey with me so I can understand my story as I grow older. In many ways, not carrying those memories feels like a true blessing.

What matters most is that I am here, thriving, and moving forward without anything holding me back.

 

 

 

 

  Our Family is so grateful for the love and support we have received from BC Children’s; we would love to be able to give back as much as we can.  Truly blessed on 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 by your support and generosity.

Share