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Jon Brent survived acute lymphoblastic leukemia | dexamethasone | methotrexate | prednisone



 

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Jon Brent shares his story of surviving acute lymphoblastic leukemia, a type of blood cancer.  He was diagnosed at age two.  Jon had to undergo an aggressive chemotherapy regimen, which included vincristine, dexamethasone, methotrexate and prednisone; but that wasn’t enough, because he also had to face a bone marrow transplant.  Between his diagnosis and his treatment, Jon has been in pain all his life, and expects to always be in pain.  Nonetheless, he approaches life with a smile and happily takes part in ultimate Frisbee and playing the drums.

 

Jon Brent of Windsor, Ontario, Canada was an energetic toddler, then suddenly in 1995 he became unaccountably lethargic.  His parents sought medical attention.  Blood work revealed very high white blood cell counts, which led to his diagnosis of acute lymphblastic leukemia.  Jon was told his type of cancer has a very low survival rate.

 

Doctors prescribed three years of experimental chemotherapy protocols.  The medications he took included vincristine, dexamethasone, methotrexate and prenisone.  Unfortunately, after those three years, Jon relapsed and had to undergo a bone marrow transplant.  Jon was grateful that unlike bone marrow transplants from an earlier time, much of his procedure was executed with a pill.  That said, byproducts of the transplant were shingles, chicken pox and Stage IV Graft Versus Host Disease, which affected his stomach, liver, skin and lungs.

 

As if cancer wasn’t tough enough, Jon Brent had to deal with it while going to elementary school, where kids can be cruel.  However, Jon credits his mother with teaching him how to “self-regulate” and how to deflect the inevitable barbs from his classmates.

 

By way of advice, Jon Brent reminds anyone diagnosed with cancer that they are not alone.  He says the grief from a cancer diagnosis is non-linear.  It comes with sadness, some anger and a lot of questions.  Jon says one doesn’t have to endure a setback and pretend it doesn’t hurt.  He says everyone on a cancer journey can and should be on a team.

 

Additional Resources:

 

Support Groups:

 

 

Childhood Cancer Canada: https://www.childhoodcancer.ca


Bruce Morton: Our guest has been battling cancer virtually his entire life.  This is the Cancer Interviews podcast, and I’m your host, Bruce Morton.  At approximately age two, the parents of Jon Brent of Windsor, Ontario, Canada, started noticing a variety of symptoms that led to a diagnosis of acute lymphoblastic leukemia.  This is a story of determination, and now is the time to hear it.  Jon, welcome to Cancer Interviews.

 

Jon Brent: Bruce, thank you so much for having me, my friend.

 

BM: Jon, we want to start out the way we always do and that is to learn more about our guest, and life exclusive of cancer.  So, if you would, tell us a bit about where you are from, what you do for work, and what you do for fun.

 

JB: I was born and raised in Windsor, Ontario, right near Detroit, Michigan.  I have lived here virtually all my life.  What do I do for fun?  I have so much fun.  I like to play drums.  I have played drums since I was eight or nine years old.  Right now, I am on the Board of Directors of my local beer ultimate Frisbee league.  I used to be a rough-and-tumble hockey player, used to engage in wrestling and martial arts.

 

BM: You were so young when your cancer symptoms materialized that it was your parents who noticed then, not you.  What were those symptoms?

 

JB: I was a maniac, one of those terrible twos as a toddler.  I was the kid running around in the grocery store, and then all of a sudden you could take me anywhere because I was so lethargic.  That’s when my parents thought there was something wrong.  They did some blood work and so the domino effect started.  That revealed some really high white blood cell counts, and it just cascaded into my lifelong journey and the symptoms, the treatments thereafter.

 

BM: I suspect with the onset of these symptoms you were too young to articulate them.  At what age could you tell your parents you were feeling pain?

 

JB: Probably about age four or five I was pretty articulate and able to describe all of my symptoms.

 

BM: And these symptoms led to what diagnosis?

 

JB: I was diagnosed in 1995 with acute lymphoblastic leukemia, and that’s a blood cancer.  At the time, there was not a high survival rate, so I went through three years of experimental chemotherapy protocols.  I relapsed after those three years and went through a bone marrow transplant.  It has been a long road since then.  I am one of only two survivors out of the ten of us getting the same clinical trial. 

 

BM: These symptoms, this diagnosis.  How did they affect you when you went to school?  How did they affect you in you in social situations?

JB: They affected me almost in every way.  I never really got socialized before preschool and kindergarten.

 

BM: We’re confident you’ll be able to learn some tips and tools to help you through your personal cancer journey, but first we’d like to invite you to please give us a ‘like,’ leave a comment or review below and share this story with your friends.  Kindly click on the Subscribe button below and click on the bell icon, so you’ll be notified when we release our next cancer interview.  And if you or a loved one are facing a cancer diagnosis, please click on the link below to check our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”  We also want to remind you we are not distributors of medical advice.  If you seek medical advice, please contact a licensed healthcare professional.

 

Jon, at this point, you are still at a very early age, you have experienced chemotherapy and bone marrow transplants.  Chemo first.  For you, what was the toughest part of your chemotherapy experience?

 

JB: First, I want to circle back to when you asked about the social aspect of my journey.  I found that when I got back into the world, I was a very articulate, sarcastic kind of angry, little dude while everybody else was doing math homework or watching Harry Potter.  They had their own place.  I was more friends with the teachers than with the students.  I was kind of a 50-year-old man in a ten-year-old’s body.  As for the chemo, I don’t remember all of the words, but I can tell you the ones that were top-of-mind because there were a lot of experimental trials.  They include dexamethasone, methotrexate and prednisone.  The hardest part was I suddenly got very tall, then get short, I got wide, and I got skinny.  I lost my hair, then it came back curly, then I lost my hair, and it came back blonde.  Right now, I am a brunette with a bald spot in the back.  That concerned me.  I didn’t see everybody else going through these changes.  There were a lot of rough days.  From the chemotherapy, there were the physical things, the nausea, the constipation, it was never comfortable.

 

BM: Now, Jon, I am going to do some circling back, and say here you were going through this, and you weren’t surrounded by adults.  You were surrounded by kids and kids can be cruel.  Did that exacerbate your experience when you were going through the hair loss, etc?

 

JB: Yes, kids can be cruel, and they are going to point out what about you is different from the rest.  I was blessed and very lucky to have a great set of parents.  My mom was and is an early childhood educator, and she really prepared me because they knew I was going to be popped into the real world and be different.  My mom taught me how to emotionally self-regulate and how to deflect these types of situations.  My dad taught me jujitsu, and that as little kid with a big mouth, I would need to know how to slip a punch. 

 

BM: Did you go through one bone marrow transplant or more than one?

 

JB: I went through one after the relapse that occurred after three years of chemotherapy.  I received it from Melissa McTrach Grimsey, an unrelated donor who lived in Waterloo, Ontario.  She had signed up to the bone marrow registry.  I couldn’t be more grateful. 

 

BM: Let’s talk about that bone marrow transplant.  We have learned from previous guests that it can be quite painful.  For you, what was the toughest part?

 

JB: I have good news.  It is significantly better today than when I experienced it.  For the most part, you can take a pill that will diffuse the T-cells that are necessary to collect in your bloodstream.  It just goes into a machine that spins and spins.  It takes out all your T-cells and harvests them that way.  Back when I had it, it was like getting sap from a tree.  They went right to my hip bone. I know my bone marrow donor still has pain from that.  A byproduct of my transplant was shingles and chicken pox, lots of things because my immune system was like, zero.  I was in an isolation room, and I wanted the room dark and without noise because of excruciating nerve pain.  Because of the transplant, I had Stage IV Graft Versus Host Disease, which is a complication you can have with any organ transplant, but because mine was bone marrow, it affected my gut, liver, skin, lungs.  Stage V would include the heart, but luckily, I was Stage IV, so my ticker is doing okay for now.

 

BM: That sounds like a great deal of pain.  Are you pain-free today?  Will you become pain-free?

 

JB: I have never been painfree, but I have wonderful pain management methods.  I do a lot of stretching, but pain has been and likely will be with me for the rest of my life.  Again, I got very lucky on the genetic lottery, as my family seems to deal with pain a lot.  I remember in high school I had a collapsed lung, among other things.

 

BM: Against this daunting backdrop, Jon, mentally and emotionally, what keeps you going?

 

JB: Therapy.  I would say my family keeps me going.  I would say my advocacy keeps me going.  I have been a volunteer helping other kids with cancer since I was nine or ten.  I have been a camp counselor and a public speaker.  I will always be of help in this space in some way.  It takes a mental toll to be in pain all the time.  I think cancer survivors understand that they have to work twice as hard to achieve the same thing as others.  You have to put in a lot more effort.  Sometimes you have a reduced timeline. 

 

BM: For somebody in your situation, support is so important.  As part of your journey, you have become affiliated with the group, Man Up To Cancer.  Would you tell about Man Up, what it does, what it has done for you and what it has done for others?

 

JB: It is a group for social support, for mental support for men going through cancer.  What we know is, men who are gong through a cancer diagnosis, they often self-isolate.  Statistics have shown that men who don’t self-isolate or seek help or camaraderie, when you have a space to talk to other men, that can help immensely.  As for what Man Up has done for me, I have lucky enough to affiliate with them since January 2024, the camaraderie has been second to none.  The website is https://www.manuptocancer.org.

 

BM: Jon, we are going to wrap up, and we always wrap up the same way.  If you would, imagine yourself interacting one-on-one with somebody who has just been diagnosed with cancer.  This person likely has lots of questions and you would have lots of answers, but if there was one point you wanted to may sure it would get through to your listener, what would it be?

 

JB: I would say, “You’re not alone.”  The grief from a cancer diagnosis is non-linear.  It comes with sadness, some anger, lots of emotions.  You don’t have to experience it alone.  You can be honest.  You don’t have to take a punch on the chin and pretend it doesn’t hurt.  Everybody needs a friend.  Everybody needs to be on a team. 

 

BM: Excellent.  Jon Brent, thanks for sharing a compelling story.  You have gone through a lot, and you are still going through a lot, and it is incredible that you are going through it with a smile.  Jon, thanks so much for being with us on Cancer Interviews.

 

JB: Thank you so much, Bruce.  It has been a pleasure.  Love you, buddy.

 

BM: Right back at you, Jon.  And as we conclude, we remind you that if you are on a cancer journey, you are not alone.  There are people out like Jon Brent, organizations like Man Up To Cancer that can be of immense help.  So, until next time, we will see you on down the road.

 

Additional Resources:

 

Support Groups:

 

 

Childhood Cancer Canada: https://www.childhoodcancer.ca

 

SHOW NOTES


TITLE: Jon Brent – Acute Lymphoblastic Leukemia Survivor – Windsor, Ontario, Canada

 

At age two, Jon Brent was diagnosed with a type of blood cancer, acute lymphoblastic leukemia.  He underwent an aggressive chemotherapy regimen, including vincristine, dexamethasone, methotrexate and prednisone, but after that still needed a bone marrow transplant.  He has achieved survivorship but is still in pain and expects to some extent he will be for the rest of his life.  Jon can no longer compete in contact sports but is an active participant in ultimate Frisbee.

 

Additional Resources:

 

Support Groups:

 

 

Childhood Cancer Canada: https://www.childhoodcancer.ca

 

Time Stamps:

 

02:30 His parents noticed Jon, as a toddler, had gone from energetic to lethargic.

03:15 Started acknowledging pain at age four.

03:45 Describes his diagnosis and treatment.

04:23 How his cancer diagnosis affected him at elementary school.

06:45 Jon shares the toughest part of his chemotherapy experience.

08:24 How kids treated him as he dealt with cancer.

09:20 Recalls his bone marrow transplant.

11:56 Says he has never been pain-free.

12:53 Jon shares how he deals with his journey, mentally and emotionally.

18:05 His advice for others diagnosed with cancer.

 

TAGS (keywords):

 

acute lymphoblastic leukemia

dexamethasone

bone marrow transplant

methotrexate

jon brent

vincristine

bruce morton

prednisone

 




Jon and Bruce take time out while watching the Red Wings shut out the Lightning
Jon and Bruce take time out while watching the Red Wings shut out the Lightning

Dan and Jon and Bruce representing Man Up To Cancer at Red Wings-Lightning
Dan and Jon and Bruce representing Man Up To Cancer at Red Wings-Lightning

 

 

 

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