Written by his mother, Melissa.
“My son, Matthew, was older when he was diagnosed 3 years ago at the age of 12. We had been treating him for a “lazy” eye but could not get him to wear the patch over his left eye to strengthen his right/lazy eye. While my husband was deployed we had Tricare which meant changing eye doctors at the time. So over spring break 2011 I made an appointment to take all 3 of my kiddos to the new eye doctor, why not just get it all out of the way? That day my sister in law Kellie went with me as I wrangled all 3 kids to Fort Smith, the closest doctor that would see children and was on the insurance approved list. After the youngest 2 kids were finished the Dr. came out and asked me how long Matt’s retina had been detached….I was shocked. I know that is a big deal, in fact a medical emergency! Then he told me it was from retinoblastoma. I am a nurse, “blastoma” means cancer tumor! I had chest pains and began to panic a little on the inside. I put on a smile and started googling from my smart phone, surely I was mistaken. I assured my son that this Dr. in fact is out of his gourd and has no idea what he is talking about.
He referred us to Dr. Claire Price in Fort Smith and sent us straight over there. When I checked in, they told me they couldn’t see him without a referral from his PCP due to our insurance. I phoned the PCP office and they were closed for spring break. I spoke to the clinic manager, she said she could not help me since they haven’t seen my son for some time. Who takes their kid to the Dr. if they aren’t sick? I called Tricare from the parking lot, they could not help me. I went back inside the clinic and with 30 people staring at me I informed the receptionist that I was told my son has a cancer tumor of the eye and am NOT LEAVING until he is seen by Dr. Price no matter what so let us see her or call the police. A very nice accounting lady had me sign a piece of paper saying I agreed to pay for anything not covered by Tricare since I didn’t have a referral, problem solved.
Dr. Price was an absolute sweet heart. She explained retinoblastoma to us and was so good with Matthew. Dr. Price asked if he had any head traumas. In fact, Matthew was a nationally ranked steer rider with the National Jr. Bull Riders Assoc. and also had been thrown from a horse so he had been to the ER with concussions a few times. She got copies of his MRIs over the last few years from our local hospital so she could narrow down when the retina detached, which had to be in the last year and a half. She gave me the option to go to Little Rock, Arkansas or Oklahoma City, OK. Both were of equal distance to us.
We live in a small rural town in SE Oklahoma where the county seat has about 9K people, if that. But I chose OKC because I had grown up just outside OKC in Piedmont, OK. Both my parents and siblings live there and I’m familiar with the area and would have some support. Dr. Price referred us to the Dean McGee Eye Institute, very near to Children’s Hospital downtown, where my mother has worked for over 20 years. In the mean time, I asked my church to pray for Matt. I contacted my husband, and I begged the Red Cross to get him sent home. I did not want to do this alone. But he did not get sent home.
My mother accompanied us to the appointment and Dean McGee, where we met Dr. Ragan Bradford, the retina specialist. They did test after test. Two more doctors came to see Matt. We were there well into the evening, the last people there. After that long day, 3 Drs came in to tell us that Matt had retinoblastoma or coats disease, they couldn’t tell which and they explained the 2 diagnosis and went over treatment options and gave us a prognosis of each and scheduled a follow up appointment for us to come back. After another MRI, we met with a team of doctors again. We met Dr. Lucas Trigler. He told me he would call me within a few days with a definitive diagnosis. He was genuinely concerned and kind, he told me he would get to the bottom of it and give my son the best care he could find. We discussed going to St. Jude’s in Memphis for chemo therapy. I cried. I cried ALOT. My son took it all in stride. I forced him to stop rodeo. There was too much risk in hurting the one good eye he had. With the retina detached already, there was never going to be any improvement. He would never see out of his right eye. I poured over home photographs, looking for the absent red eye. I waited for Dr. Trigler’s call. After a week I called his office. They took a message. I waited, imagining the worst but hoping for the best.
Dr. Trigler called me, he apologized for taking so long. He explained that he was deeply invested in Matt’s case. So much so that he flew to Philadelphia and presented my son’s case to a team of specialists at the Will’s Eye Hospital where the leading specialists in the nation could go over Matt’s case study. I was so taken back and beyond impressed with his efforts, I knew he cared about my son. He told me, he is fairly certain it was Coats disease, and that was the decision of the group after they studied Matt’s case. I was supposed to be relieved that my son did not have cancer, and I was relieved. But cancer is something I know about, cancer has a name, I understand cancer, I know how to fight cancer. But Coats disease I knew nothing about. Information was extremely limited. I scoured the internet. I read everything I could get my hands on. Only to be let down. There isn’t much to do, the retina was already detached. He was already blind 100% in that right eye. No options, no treatment. Nothing left to do except accept the fate he was given. Its not fair. Why my son? Why Matthew? Beyond frustrating.
Matthew was born at 30 weeks, he weighed 3lbs and 8oz. He was tiny. But breathing on his own, he came home from the hospital at just over a week old. Matthew was a fighter. I had to go to school to give him breathing treatments daily during the spring/fall thru head start, preK and kindergarten. He had RSV twice in the first year of his life, resulting in multiple hospitalizations and isolation rooms. Matthew has a purpose in this world. Matthew is the third of 6 children. Matthew is that kid that reaches out to the new kid at school. Matt has a heart of gold. Matt knows no strangers, he goes with the flow, he is laid back and easy going. He held my hand and he explained “mom, I don’t miss my right eye, I guess I never needed it since I can’t even remember when it stopped working and I never noticed.” Matthew had adapted well apparently! I realized I was the only one mourning the loss of vision in his right eye.
Approximately a year later, my husband and 2 youngest daughters were in horrible roll over car wreck. My 7 week old daughter and husband were life flighted to Tulsa. Our family was once again devastated. That was April 2012. That summer Matt developed a noticeable cataract in his diseased eye. I assumed there was nothing to do since he couldn’t see out of that eye anyway. Why bother with it? I had my hands full rehabilitating my husband from a traumatic brain injury. July of 2012 I was laid off my job due to medicare cuts. I found another job but not before we became financially destitute. I finally had time and money to take Matt back to OKC for Dr. Trigler to look at that cataract in October 2012, after it was already very obvious to anyone who looked at his eye. I let him grow his hair long over his right eye to hide it. Kids at school can be cruel. We learned he needed surgery, the pressure in that eye was up. And Dr. Trigler would get the chance to look inside and tell us for sure it was Coats disease. We decided it was a good time for surgery, we had met our deductible and max out of pocket for the year with Tricare after the wreck. The week before the surgery, the billing office called me to inform me that we would be financially responsible for meeting our $1000 deductible plus 20% of the surgery and they would need that money up front. I was sick to my stomach. I didn’t have $100 much less $1200.
I prayed. I prayed without stopping. I couldn’t eat, I couldn’t sleep. How could this happen? My husband had dedicated his life to the freedom of this nation and served our country. I am a nurse, I care for the sick, elderly and disabled. We chose lives of service to others and this happens to our son? Our son who had done nothing wrong in his short life. Our son who could not tell a lie if he tried. Our son needed a surgery and we couldn’t afford it. Apparently Tricare’s year starts over in October, with the government’s physical year. I refused to cancel the surgery though. I was going to find a way. Matthew told me he did NOT under any circumstances want any of this to be made public. He asked that I not talk about it on Facebook or have any benefits dinners or pie auctions and for heaven’s sake do NOT put his name/face on a jar at any gas station. He did not want any attention what so ever. Teenagers are so private! And I remember learning in nursing school that they are focused on body image and all of that. But I was devastated, I did not want charity either but I was willing to gravel to come up with the money if that is what it took, and he wouldn’t let me. I refused to cancel the surgery though, my God is bigger than any problem I have.
I found comfort at church, surrounded by those that had been there to help after the wreck and all the other bad things that kept happening to us. The Sunday before the surgery my sister in law Ginger stood up at the end of church and told the congregation that Matt needed a surgery and explained the situation. Tears gushed as they passed the offering plate. I have never been so humbled in all my life. Then I got a call from the lady that use to baby sit my sons when I was in nursing school, she asked me questions about Matty’s disease. She and her day-care moms put on a bake sale very quietly without mention of Matt’s name. Between the 2 out pours of love, we had enough money to pay our part of the surgery plus gas and food for the trip and cover my lost wages from work. Everything was going to be okay.
So we waited on pins and needles during a grueling 3 hour cataract removal surgery, after we were told it would be a quick in and out surgery. Dr. Trigler explained the cataract was very large and had grown into multiple places that required more time than expected and he put a lens implant in that right eye. Recovery from that surgery was tough. Matt woke up the next day begging for me to take off the patch. He was shaking and very irritable, not his normal self. Though the post op instructions were clear not to remove the patch, I phoned Dr. Trigler’s nurse, she allowed me to remove the patch. The wet gauze was stuck to his eye lashes. Once that was resolved he was better. We went to the follow up appointments an all seemed well again. He cut his long hair. He had that “twinkle” in his eye from the lens implant, which makes me smile every time I see it. He doesn’t have the yellow glow in pictures anymore either!
Since then he reports the pain in the eye increasing, he tried steroid eye drops and that helps a little. We went back to Dr. Trigler March 10, 2014. He and Matt discussed an eye muscle correction surgery. Matthew decided he wanted to try it. He wants the eye to appear normal. We scheduled the surgery.
Spring break 2014 Matthew got his learner’s permit. It broke my heart to watch him
fail the portion of the eye exam whenhe had to cover his left eye. But he is 20/15 in the left and Dr. Trigler already assured him he would be able to drive. He is a good driver! I still won’t let him rodeo. He belongs to FFA but I won’t allow him to weld. I don’t want to take any chances, but I have to let him live. So this year he passed his physical for school and is playing baseball. As a freshman he doesn’t get much play time but he doesn’t mind.
March 27, 2014 he had the muscle correction surgery in OKC. It went well as far as we can tell. He goes back for a follow up appointment April 2. In the mean time, he participates on the high school archery and skeet shooting teams as well, and he is very accurate! Matt loves to hunt, and has shot a deer every season so far. He loves to talk about his future truck, as I assume all boys his age do. Matt his my hero. He is resilient, smart and funny. He is kind and caring and the best big brother I could ask for.”