Keeping up with this NF Hero and his medical treatment, as well as, hoping to help spread awareness about Neurofibroma. They are all little heroes in my mind.
My heart goes out to every child going through any type of medical treatment and how much strength they have from it all. When Tyler was born, we knew something wasn't quite right. He went straight to NICU after birth, initially for respiratory distress only to later find out it was much more serious - quite a scary place to be for any parent. He spent nine days in NICU while doctors tried to figu
re out what kind of tumor was behind his left eye. We left the hospital without answers but knowing his life was not in immediate danger. Around three months old, Tyler had a biopsy and shortly after that a doctor from Stanford University looked at Tyler's scans and identified the tumor as a plexiform tumor. Our young man has a condition called Neurofibroma type 1 or NF1. From there, we began seeing many different types of specialists, such as opthomologists, ocular plastic surgeons, cranio facial surgeons, oncologists, and geneticists. Tyler had a debulking surgery done around nine months old as our first attempt at decreasing the size of this mass. The tumor grew back quickly and it was decided that he should not have surgery again until the age of four or five. In the meantime, the tumor was growing at an aggressive rate and there was nothing we could do until he turned three. When Tyler turned three, we decided to try out a drug called Gleevac. It is typically used for leukemia patients but has had approximately a 40% sucess rate in stopping the growth of plexiform tumors. Tyler stayed on the gleevac for around 14 months to no avail. The tumor was and is still growing at an alarming rate. That brings us to now...our choices were to try another drug, PEG-Intron and/or explore surgical options. We explored the surgical route by visiting Dr. McKay McKinnon in Chicago with the possibility of trying the PEG-Intron after he has recovered from surgery. Dr. McKinnon delivered the news that Tyler's MRI showed that what we originally believed to be a single tumor on the 5th Cranial Nerve is in fact 3 separate tumors growing off each of the 3 sensory branches of the 5th Cranial Nerve. The location of the tumors on each of those nerves is affecting the following areas for Tyler: lower jaw, upper jaw, cheek, head/temple, eye (entire orbit), nose, carotid artery, optic nerve, and parotid gland. Some of the possible risks of this surgery are severe blood loss, loss of sensation in the lips and cheeks, and damage to the eye sphincter muscle. Some of the risks for Tyler if we do not remove what tumor can possibly be removed: bone deterioration, lengthening and/or destruction of the maxilla and mandible, further deformation of the orbit, further lengthening of the optic nerve as well as loss of vision and damage to the eye sphincter muscle and loss of hearing. We have decided to go ahead with the surgery. Tyler will have surgery in December at Lurie Children's Hospital of Chicago where Dr. McKinnon's first priority is to follow each tumor to its original origin, cauterize and remove them. Although, the tumor is “intimately” close to the carotid artery, in Dr. McKinnon’s terms, he will not be going near any of the tumor near the carotid artery or the optic nerve. Since this is such an extensive procedure, described as pulling cotton balls out of a briar bush, the surgery will last about 6 hours. His second priority will be correcting the bone structure in Tyler's left eye socket which will most likely be done three to six months from now. This page is to help Tyler's friends and family, and friends we don't know yet, keep up with his life. We will also be accepting donations in order to help defer some travel and medical expenses. To Make a Donation, Please Send a Check or Money Order Made out to:
Michelle or Tyler Clendenen (I have set up a checking account in Tyler's name with Navy Federal Credit Union) and send to:
P.O. Box 340
Grayson, GA 30017
OR to Make a Paypal payment using your Paypal account, simply send the payment to:
If you'd like to learn more about NF, please visit www.ctf.org!
10/18/2025
I had the honor of meeting this beautiful woman today. Her name is Carmen, and she has NF1 just like Tyler. She and I talked about some of her experiences with NF — the surgeries, the pain, and the hurtful comments from other people who don’t understand. Yet through it all, she has never let NF define her or allowed herself to fall into a victim mentality. Carmen went to college, built a career with the U.S. Postal Service, and proudly stands on her own two feet. Listening to her speak about her life and all she’s overcome left me in awe. Meeting her filled me with hope that Tyler, too, will grow into an adult who carries that same resilience, independence, and grace — living life fully and on his own terms. ❤️
07/24/2025
This video came out 5 years ago and I just saw it for the first time. I love how it explains NF and all the ways it can present itself in patients with NF1.
03/27/2025
Eight years ago, Tyler had an appointment with Dr. Joe Williams, a pediatric plastic surgeon who has been following Tyler since birth. At that time, we were told Tyler would need surgery around 16 years old to align his jaw, which would involve breaking it and resetting it.
Today we saw Dr. Williams again and he doesn’t feel Tyler needs that surgery after all!! Yay!!! We did discuss other surgical options but nothing that needs to be done any time soon.
(Pic is of Tyler at a school dance recently)
03/05/2025
Happy 17th birthday, Ty-man!!
02/28/2025
Hey friends and family, I know we don’t update here as often anymore. Tyler is turning 17 next week! Can you believe it? As you know, as kids get older, the less they like having pictures taken or information shared about them without their permission (at least that is our experience with raising boys). And we try to respect that. I just want y’all to know, he is still taking Koselugo and seems to be tolerating it well, his tumors are stable. But I am reaching out today for prayers for him and our family. During these teenage years, we are going through some roller coaster emotions as he spreads his wings into adulthood. It’s hard enough to be a teenager but having a chronic medical condition on top of it can feel overwhelming. Please keep praying for Tyler, he needs it now perhaps more than ever.
12/18/2023
I’m sitting here waiting for Tyler to come out of his MRI and I’m supposed to be finishing some online Christmas shopping. Instead, I got lost in memories of FB!!
It's hard to believe this was 11 years ago! I can honestly say this was one of the most traumatic times in our lives! Tyler really has no memory of it. I can only thank God, our family, friends, Grayson United Methodist Preschool, the staff at Ann & Robert H. Lurie Children's Hospital of Chicago, and the RMHC Chicago and Northwest Indiana for the positive memories Tyler has of his multiple surgeries and trips to Chicago!
Matt Forte, #22 from the Chicago Bears, played trains with Tyler during a play group time. Then Matt helped the Marine's pass out toys from the Toys for Tots donations. Tyler had a blast!
11/18/2023
Tyler created a petition for Chick-fil-a to serve breakfast all day. He asked me to share it here on his page and ask you to sign it 🙂
Yay, yay, yay!!! Tyler’s medication has FINALLY been approved. This has been an ongoing battle since August. Thank you to everyone who prayed for Tyler, his Dr and nurse who advocated for him and especially to his Dad (who wrote a very blunt and persuasive letter to the insurance company)!
11/07/2023
It’s been a bit since I updated everyone on Tyler’s progress. He had a check-up last week and is thrilled he has finally passed me in height, lol! His pediatrician actually thinks he will be around 6 ft in height!! Then today, he had an appointment with Dr. Wolf today and overall, he looks great!!
He has recovered from his surgery and can finally get water in his ears, yay! Fixing the ear drum was successful but raising the ear to be symmetrical with the other was not. The tissue behind his ear is paper thin and wouldn’t hold. We are exploring what our options are as it makes wearing glasses very uncomfortable and can be painful for him.
Next, we are STILL fighting with insurance to get approval for Tyler to restart the Koselugo (selumetinib). They just keep requiring more things, like another echocardiogram or more labs. It’s never ending. 🤦♀️
08/04/2023
Tyler is out of surgery and back in the room with us. He should be able to go home soon. It’s been a long day and we are looking forward to getting home.
08/04/2023
We are here! It is an outpatient surgery but will take 4-5 hours. The teenager didn’t want a picture taken 😂
10/18/2025
03/27/2025
03/05/2025
02/28/2025
12/18/2023
11/18/2023
11/16/2023
11/07/2023
08/04/2023
08/04/2023