12/26/2025
It's December 25th! ☃️ Merry Christmas, y'all!! 🎄
It's beyond time for a Trevor post, & I've carved out some quiet time here at home to sit down and put together an update. With months of happenings, I'll try and keep this short and sweet, but as always, there is so much to share!
First of all, Trevor has asked me to say hello 👋 to each of you. We have definitely slowed down on the posting, and he has missed hearing your encouragement and interactions here. I cannot believe the last update was from May - feels like just yesterday, but in the same breath, like a lifetime ago. We hope you are all doing well and that you've had a wonderful day filled with all that you love the most!
In thinking of the best way to update, since we have a few months to catch up on, I will start with a medical update & give y'all the nut-shell version so we aren't here all night, lol. 😅
Update:
Trevor has had 3 big scans/MRI's since our last post in May. He had a brain scan in June, September, and just recently in November. His scan in both June and September showed minor changes, nothing drastic & there were no new findings. His brainstem tumor was stable. I can't even put into words the relief you feel when stable results come back; it's like you don't even realize you're holding your breath until you're breathing again.
The most recent MRI brought some new concerns. Trevor's MRI's are done with contrast and dye so that all the details can be seen, including anything that might be irregular in blood-flow, etc. His MRI in November shows three spots of FLAIR hyperintensity. These spots indicate slow blood flow & indicate possible intracranial tumor dissemination or seeding, meaning cells spread within the brain/new tumor spots. Without a 🧠 biopsy, nothing is 100%, and at this time, the risks of an intracranial biopsy outweigh the urgency of pathology results. IF these spots continue to develop, the silver lining is that all 3 are in operable locations. Trev's doctor feels comfortable waiting to make a decision regarding another biopsy until the next MRI. So, we are currently in a "watch and wait" mode. Watching Trevor for an increase in symptoms. Waiting on time to determine next steps. 🙏
Now, as if that wasn't enough, this is where things get a little sticky.
Along with the obvious concern of growth/recurrence of the tumor/brain cancer, they've been watching Trevor's weight/growth closely for the past year or so. Unfortunately, after months of intentional observation, some medication trials, and multiple tests, they've determined Trevor's pituitary gland is not working. He hasn't grown in 2 years & 3 months. They are unsure if the tumor itself damaged his gland or if it was the year of chemotherapy treatments/medications. The pituitary gland is located at the base of the brain, at the base of the brainstem, which is located underneath where Trevor's tumor sits in his brain. The pituitary gland is essential for regulating hormone production from most of the other glands in the body, playing a crucial role in numerous functions as well as overall health. 🥺
In September, Trev's Endocrinologist specialist, Dr. Lin, officially diagnosed Trev as having "failure to thrive" and "short stature". With an official diagnosis, they were able to order some extensive testing, which Trevor completed in November. He was hooked up to various machines & an IV for about 7 hours. They gave him intermittent medications 💊 and did a blood draw every 15 minutes. It took 7-10 days to get all of the lab results back, while we waited to determine possible next steps in treatment.
We got the call in the last week of November that Trev failed all of the testing (which was expected) & the only hope for growth would be to start a daily injection💉 of a specially formulated medication, including Norditropin, which is a human growth hormone. This medication requires careful monitoring for serious side effects like increased blood sugar or tumor growth IN NORMAL patients, so, in Trevor's case, it means very close monitoring and a collaboration of treatment with both endocrinology and oncology.
On December 1st, I had a conference call with Dr. Lin (endro) and Dr. Klessey (oncology) to talk through the risks, the pros, the cons, the what-if's. At the end of the call, we were given a deadline of the end of the week to decide what we wanted to do. If we chose to proceed, we were advised to start asap. It was explained that Trevor's window for growth is essentially until he is 18 years old, he is currently 2 years behind, and he can't get those years back, so the sooner we start, the better the chances he will reach a "normal" functioning size. If he started treatment now, he may "top out" at the size of an average 16-year-old, if we wait, he continues to "lose" the days/months of growth. This is all IF the formulation works, IF he doesn't have side effects that would force stopping the injections, IF, IF, IF.
I'm sure y'all have probably put two and two together, and what absolutely terrifies me, what stands out as the biggest risk of starting this treatment, is that the growth hormone will do what it's designed to do, & it will grow any foreign cells/cancer as well.💔
The devastation and heartbreak I've been carrying over the last few weeks runs deeply. It's already been a really, really hard journey, haven't we been through enough? I felt like, in many ways, we were finally moving into the "maintenance" phase. We were healing. We were recovering. Moving into the next chapter of Trevor's journey, a chapter where he was getting to be a "normal" kid. Normal school attendance, normal activities, normal expectations. Now, 3 new spots and failure to thrive...with a treatment plan that feels like a lose-lose situation with no chances of normal in sight. 💔 It's hard not to be angry. Hard to fight the discouragement and desperation.
BUT, I keep coming back to the fact that we haven't fought with everything we have, for Trevor to not have a life. We've been in the trenches fighting for tomorrow, fighting to beat the odds, fighting for Trevor to LIVE. 💪I can't imagine him having to stand by and never be able to do things like drive a car. Never have a family, if that's what he wants. To never have an adult job. To never be larger than the 3rd percentile, never taller than 4 feet. I just couldn't wrap my mind around it & it just seems wrong that Trevor wouldn't have the chance to live a normal, functional life. He deserves the same chance as anyone else, and we so desperately want that for our boy. 🥺
December 15th, Trev, Wyatt (his oldest brother), and I made the trip back to Dallas to pick up the formulated medications and to attend a training course. He has to give himself injections 6 nights a week, with Sunday night off. He was and has been, so incredibly brave. He hates needles. Each injection is a challenge, and he faces it with brave resolve. I hate it for him, it breaks my heart to watch him go through the steps with tears in his eyes 😢 but I am so proud!
Injections started last Monday & by Wednesday, it was rough. He was miserable & so sick. He woke up around 5am on Wednesday morning, I gave him meds and he went back to sleep. He had meds again around 8:30am and said he felt good enough to go to school. By 10am he had gotten sick at school, all over the floor 🤢 (the poor custodian at the school is an absolute angel, thank you Gigi ♡), he was sick with a terrible headache, 🤕 neck stiffness & nausea, until Friday afternoon. All symptoms of his body regulating (doctor said was normal) and although he's still fighting the head pressure, he seems to be doing better.
So, medically, that's where we stand. We are STILL doing this dang thing. We are stepping out in faith that we are making the right decision in Trevor's treatment plan, that these injections will help him grow big and strong, that Trevor will continue to beat the odds. 👊 We will be on the road to Dallas again every other week at a minimum, for the time being. Labs & scans. We watch. We wait. We hold on to HOPE.
Now, for the best part of this update, all the photos 📸 of Trev living his best life over the last few months! Ring security in his Aunt's wedding, a family cruise to Mexico that my parents booked for our whole family (21 of us!) camp Esperanza with Children's Health, his 12th birthday 🎂, and also events he's attended, spoken at, and worked. Our boy has been busy! As y'all know, Trevor has been an ambassador for Children's Health this year, it has been the most amazing experience! Trevor steps out in any situation with confidence to share his story, share his journey, and do all that he can to bring awareness to pediatric cancer🎗 and the health care needed to make life better for children! This year and over the summer, he has attended some of the most amazing events, and has had the privilege of standing alongside some influential people & organizations, with a reach wider than ever to make a difference. Big names like Dak Prescott, Scottie Scheffler, Troy Aikmen, Hyundai Hope on Wheels, Panda Cares Foundation, Movies With A Mission/AMC Theatres, Volleman's Family Farm, Adolphus Tower Gallery in Dallas, the Dallas Stars, etc. This summer, (most of y'all probably already know) that his artwork was featured with Dippin Dots, Kona Ice🍧 Cups/Truck & at the SMU🏈 football stadium/on helmets, his boot with Vollemen's milk 🥛 went out not only here in Texas but also in Oklahoma, Arkansas, Louisiana, & Mexico. Y'all. It's overwhelming in such a good way!👏 When I'm having a hard time seeing the positive in the situation, it helps to focus on the GOOD things being accomplished. Trev's changing the world! 🌎 What a blessing it has been to have such a purpose in the journey. Without his fight with cancer, Trevor would never have had these opportunities. Without cancer, he wouldn't have this story to tell. 🤷♀️
My heart's desire has always been that my kids would be good humans, kind and compassionate. That they would stand for what is right & make a positive impact in this world 🌎. When I think of all that Trevor has accomplished in his 12 short years of life, I can't help but be thankful for this journey. It has taken SO much from our family, and it continues to take financially, emotionally, & physically... but not without a story worth sharing.
This may not be the life we imagined, but it is the one we were given. Despite the heartbreak, the fear, the unknowns, Trevor is exactly who he is meant to be, living the life he is supposed to live, for as long as he is given.⏳️ At the end of the day, putting aside everything else, I'm grateful. Grateful for Trevor's life. Grateful to be Trevor's mom. Grateful to be sharing his story with all of you! Thank y'all for being along for the journey. We appreciate your love, prayers, and support more than you'll ever know. 🫶
Until next time, we wish y'all a very Merry Christmas and a New Year full of many blessings!! 🧡
