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 figure 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:
chelli535@msn.com
If you'd like to learn more about NF, please visit www.ctf.org!
