Trevor's Fight

02/05/2026

Although today is just another Wednesday, it's also World Cancer Day. It's hard to remember what life was like without cancer as a part of our daily lives.🥺

This weekend, February 7th, also marks the 3rd anniversary of Trevor's 1st chemo infusion. It has been three years of what feels like a constant uphill battle. Those of you who have followed Trevor's journey know that he has overcome so much...our boy has continued to beat the odds!💪 I've said it before, and I'll say it again, we are forever grateful we still have Trevor this side of heaven.

Thank you to each and every one of y'all who have continued to send your love and prayers, we appreciate you, so much! 🫶

Be on the lookout for an update on Trev, I'm hoping to make that happen this weekend! 🧡

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!! 🧡

05/02/2025

The news we've been waiting for!! 👏🥛🐮 Thank you to everyone who took the time to vote, we're so excited!! 🫶

https://www.facebook.com/share/p/169LqYeTa1/

We're excited to announce that the winner of our 2025 Children's Health Bottle Design Contest is... Trevor!🥁

Trevor's design will be hitting store shelves soon, and the best part? A portion of each bottle sold will go back to The Children's Health Foundation to support their incredible work!

Thank you to everyone who voted — and a big congratulations to Trevor! Stay tuned for the official launch! 🎉

05/01/2025

May is Brain Cancer/Brain 🧠 Tumor Awareness Month. 🩶

Not just in May, but every day, we're aware. It's been a long road, but Trevor continues to beat the odds & I'm forever thankful my baby boy is still this side of heaven. 🧡

We're also deeply grateful for each of you & the love & support you've given to us over the past 2 years! Having you walk by our side has truly been the biggest blessing. 🫶 Whew! What a journey!!

04/27/2025

Happy Sunday, y'all!! Don't forget, Trev's cute little boot is a finalist in a competition with Volleman's Family Farm!! 🐄 Today's the last voting 🗳 day!!

Quick re-cap:

Those of you local to East Texas, I'm sure you've seen the glass milk 🥛 bottles at the grocery store. Volleman's is a corporate partner with Children's Health and their milk is sold across North Texas and beyond with proceeds benefiting Children's Health. The top winner from the voting contest will have their design printed & featured on their glass milk bottles! 👏

Trevor was thrilled to make it into the finals and would be forever grateful for your vote! Voting is open now & closes today, Sunday, April 27th. The winner will be announced on May 2nd. 🤞

Following the link, you will enter your name and email, select Trevor's boot art, and hit submit! Easy peasy. Side note, it will open a donation page, but you can just close out of it - no donation is necessary. You can vote 1x a day. ❤️

If you have a second, please share, and let's help our boy have his art featured on the milk bottles!! Vote, Vote, VOTE!!

https://give.childrens.com/forms/view.php?id=180765%202025%20-%20Corporate%20-%20Volleman%27s%20Family%20Farm%20Voting

04/23/2025

Well, friends, it's been a hot minute since I've updated, so much to catch y'all up on!

Anyone who knows our family, knows that there is never a dull moment! A packed calendar pulling us in a bajillion different directions. Although too busy for our own good, I am forever thankful for this chapter in our lives. You all know, there were days we didn't know what the following day would bring and the perspective/feeling that comes from living moment by moment, breath by breath...it's more than I can put into words. To be living "normal" lives right now, with minimal limitations, is something I will never take for granted. I realize that it sounds so cliche, but there is something about your baby being on the edge of eternity that truly makes you strive for a life of purpose. 🥹 A life full of goodness!

The last update I shared was mid-February and so much has happened in the life of Trev since then! I will do my best to keep this update relatively short but not leave anything out, lol! For those who messaged me, worried about my Christmas 🎄 tree, I did finally get it down over Spring Break, lol! Keeping it real over here y'all - this season of life has really humbled me, but my constant goal is to do my best and let go of the rest! ❤️

The end of February had us traveling to Dallas to participate in a "Tell Your Story" workshop with Children's Health. I don't remember when we shared about Trev's 2025-2026 ambassadorship, but I'm pretty confident we touched on it a few times since finding out that he was selected! In a nutshell, Children's Health nominates a handful of patients to step into the role of Ambassadors for a year. Advocating for the hospital, helping to raise awareness of the incredible programs and services provided for patients along with participating in fundraising/partnership opportunities between the hospital and donors. We chose to embrace the opportunity presented to us as we felt like it was something we could do to take our experience and this journey with cancer and use it for good. To make a difference in the lives of others, an opportunity to live these days Trevor has been given with purpose. The workshop was informative and gave us a kick-start into preparing for all the opportunities that have been rolling in! There are 3 big ones that I'll share with y'all a little farther down in our update, and we actually have a favor to ask along with the last one!

March 15th brought Trevor's big MRI. I'm just here to tell you that scan days are HARD. The lead-up, the day of and sometimes even days after, have the track record of pushing this Momma into emotional overload. I think part of the overload is "being strong" and putting that strong face on for Trev and even for Wyatt and Cody. As a parent, I hate to see them worry, especially about something that is out of our control and something we can't do anything to change. So we tend to play it off a little bit, which is hard. Trev handled it like a champ. I'm not going to lie, it really hasn't gotten any better watching him get his IV. Over the past 2 years, I can't even count how many he has had to endure, and it just doesn't get any easier. It breaks your heart watching him be brave. His body language, the way he works at his breathing, the way his eyes well up with tears, and overflow along with quiet sobs. I hate it. But, this is the very first time he did it without crying! His eyes teared up, but he just kept on breathing through it. It may have had a little something to do with the timing of the happy pills/sedative he took for the scan but any way he can conquer the trauma, face it and work through it over and over again is pretty brave in my book. The scan lasted about 1 hour and 45 min. After the scan, we headed up to the Oncology floor. It was fun to see our 6th floor family! It had been a few weeks since we had seen everyone, the longest stretch we had gone without being there in 2 years! We also got to meet Trevor's new lead doctor. It was so weird to not see Dr. Bui, but they said she is doing great on her new adventure, and we are so happy for her. 🥰 Trevor's new doctor, Dr. Klesse, is wonderful! I am thankful for the smooth transition and level of compatibility we felt.

Scan results: Scan showed minor change in tumor size. BUT, the MRI was read by a different tech, so the small "growth" may not actually be growth but just a difference in measuring technique. We won't be able to tell for sure until his next scan, but he is still considered "stable." There was some "new discovery" from the MRI. "Scattered Hyperintensities in the Midbrain" which can be caused by changes in the water content and fluid movement in the brain tissue, Ischemia, micro-hemorrhages, gliosis, damage to small blood vessel walls, breaches of the barrier between the cerebrospinal fluid and the brain, or loss and deformation of the myelin sheath. All of that to say, y'all know that Trev's brain has experienced a lot of that trauma, and so we aren't surprised to see the hyperintensities. There was also a slight mass effect found on the posterior third ventricle and the cerebral aqueduct obstruct affecting the cerebrospinal fluid (csf) flow, which can lead to hydrocephalus and related symptoms like headaches and cognitive difficulties. Which explains his intense headaches.

There is nothing to do for either "new" finding at this point, aside from watching him for increased symptoms or seizures, and keep plugging along until his next scan in June. We are thankful for "stable."

This past week, Trevor also had an evaluation done for potential physical therapy. If you had known Trev before, he was active and had more natural athletic abilities. Over the past 2 years, his coordination and abilities have changed quite a bit. He is very mechanical and lacks the fluidity that he used to have. Honestly, it hurts me to watch him run or try and do "normal" physical things that other kids his age do. His medical team suggested that he be evaluated for potential services that might help him regain some of what was damaged/lost throughout treatment. I asked Trev how he felt about it, and he said as long as they don't make him run a bunch, he's fine with it, lol. He does hate always coming in last and not being able to do everything that others can BUT I'm not convinced he hates it enough to put in the effort & go through the pain it would cause to improve, typical 11 year old, lol. I haven't heard back since the evaluation & I'm curious to hear what will be recommended. We'll keep you posted on that!

Towards the end of March, Trevor (along with another Children's Health Ambassador) attended Micah Parson's (a Dallas Cowboys Defensive End) event "Pins with a Purpose" through his foundation, Lion Heart Foundation who partners with Children's Health. It was an invite only, private event and Trevor made the comment "I think you either have to be almost 10ft tall or super rich & famous to get an invitation" as everyone he greeted was fellow Cowboy's players & fellow athletes/VIP's! Trevor greeted each guest and handed out t-shirts as they arrived, thanking them for coming and for their support.

On April 11th, Trevor, along with 3 other ambassadors, attended a Legacy of Love event that was presented by the Women's Auxiliary to Children's Medical Center. Anne Geddes was their guest speaker. Her life's work is driven by her love for children. It was amazing to hear her story! Trev didn't bat an eye, interviewing on stage in front of hundreds of people. She said, "I hear you're a funny guy," and he responded, "I like to think I am!". It was an engaging interview, and Trevor did a great job sharing about his experience with Children's Health.

A few hours after the luncheon ended, Trevor was back on the big stage as an alumni at the annual Gala for the Children's Cancer Fund. He hung out backstage with all the celebrities and fellow CCF friends and then walked the stage at the end of the event. This year, the Gala raised over 3 million dollars for Children's Cancer Fund!! What an incredible night!

Trevor's next project was to submit an art piece to potentially be made into a custom decal that would be displayed on SMU helmets 🏈 during the SMU Spring Season. Not only for the helmets but also to be used for the athletic department for the 2025-2026 school year. Trevor's piece was one out of 15 that made it as a finalist. They were voted on by all SMU players and staff & we found out a few weeks ago that Trev's "Pony Up" Mustang was chosen!! Last Wednesday, our family spent the day on the SMU campus, touring their facilities, meeting the players and coaches and had an interview with some media outlets. They made him a custom helmet with his decal on it and Trev enjoyed getting autographs throughout the day. It was an incredible experience. A beautiful campus and the team was hands down, the absolute best! Favorite moment: We were out on the field watching the offensive team running plays, and they called Trev over. They introduced him, and he got to be a part of their huddle. As they were walking off, some of the guys circled up and prayed for Trev. 🙏 We were there to advocate for Children's, yet we left so encouraged! This Friday, we will be back on campus to see Trev's art in action at their last Spring practice! 👏

Lastly, (and this is where we'd love your help!) we found out this week that another piece of Trevor's artwork has made it as a finalist in a competition with Volleman's Family Farm. 🥳 Those of you local to East Texas, I'm sure you've seen the glass milk bottles at the grocery store. Volleman's is a partner with Children's Health, and their milk is sold across North Texas and beyond with proceeds benefiting Children's Health. The top winner from the voting contest will have their design printed & featured on their glass milk bottles! 🐄 Trevor was thrilled to make it into the finals and would be forever grateful for your vote! Voting is open now & closes on April 27th. The winner will be announced on May 2nd. Following the link, you will enter your name and email, select Trevor's boot art, and hit submit! It will open a donation page, but you can just close out of it - no donation is necessary! I think you can vote 1x a day. I'll share the link below & y'all feel free to share, and let's help our boy have his art featured on the milk bottles!! Vote, Vote, VOTE!!

https://give.childrens.com/forms/view.php?id=180765%202025%20-%20Corporate%20-%20Volleman%27s%20Family%20Farm%20Voting

Well, I said I'd try and keep this to a minimum, but as you can see, the last 7 weeks or so in just Trevor's world has been a whirlwind! I joke that Trevor needs his own manager, lol. 😅 Keeping up with his commitments along with two other active kiddos and their school & sports schedules, work, businesses, etc. is a lot to juggle, lol! We know we aren't the only ones in this super busy season of life, and I hope you all can reflect on how blessed we are to be living this life we've been given!! 💕

Thank you all for your continued love for Trev and our family. We are so thankful for the continued support and community as we continue pursuing purpose in this journey! 🧡

02/09/2025

Merry Christmas & Happy New Year y'all!! Here we are, well into 2025 and our Christmas tree is still up!! At this point, I can't help but laugh at the ridiculousness of that and yet, I'm giving myself a little extra grace until I can get it done. Cody, my middle kiddo, walked in the house from school a few days ago and asked me if it's "normal" to still have Christmas decor up in February. I was like, "what's normal anyway?!?"

The last two months have been so SO full. Full of countless things, both good and not so good. I am thankful we can say that the hard things we've walked through over the past month or so have easily been overshadowed with good things! I'm sharing a ton of pictures with this update as it was too hard to narrow down which ones to share, lol.

In a nutshell, since the last time I shared an update with y'all, Trev had surgery for Mort the Port to be removed, mid-December. That weekend we made a whirlwind trip to Austin to celebrate Trev's soon-to-be Uncle Joe (my baby sister/ Trev's aunt is getting married in May) graduate from State Trooper Academy. About a week or so after that, Christmas arrived & we enjoyed the most laid-back Christmas we've ever had, and it was perfect. We rang in the New Year sound asleep at our park & fly hotel in Dallas as we flew to Florida on January 1st for Trevor's Make-A-Wish Trip to Disney. The last day in Florida, Trev woke up with the flu that ended up lasting 9 days and brought 2 ER/hospital visits and 3 trips to the urgent care. After recovering from the flu, Trev had just one week back at school before he was down & out again for a pretty intense eye surgery. We've been back and forth from Dallas three times in the last 9 days. He's been through a lot...but as y'all know, that's nothing new for our boy.

In and amongst all of those things, Michael & both brothers ended up catching the flu which made it feel like our household would never be healthy again. I'm pretty sure I had it as well but thankfully didn't get the high fever and was able to stay functional & like Momma's do, I toughed it out for a few days. Outside of the sickness, along with Trev's schedule, full time jobs and the typical 8th grade and 10th grade school/sports activities, every free moment has been packed. Michael and I often say, it's their world and we're just living in it. Although exhausting, I wouldn't change a thing.

So, to share a re-cap of Trev's highlights:

Bye bye Mort!!! Port removal day finally arrived. To be honest, it came with mixed feelings. Sounds crazy but I found myself feeling anxious that we were taking it out. It felt so final to have it removed when we aren't done with this awful disease. I'm telling you; Cancer feels like a gift that keeps on giving but it's not the good kind of repeat gift. It's more like the worst White Elephant gift you could imagine, a gift that keeps on taking. Although stable, it will be years before Trevor will be out of the woods, so it was hard for me to let go of this life saving piece of his treatment. Obviously, if ever needed, it could be put back in, although I pray that day never comes. We also wanted it out so that Trev could ride all the rides at Disney! Thankfully, the removal was smooth sailing and all went well. He was SO excited to get to sign for "adoption" and bring Mort home, lol. We were shocked to see that it was purple! I guess I didn't really think about what it might look like but when they handed it to us in recovery, it brought tears to my eyes and the biggest smile to my face. I couldn't help but think of my sweet friend Barbara who lost her daughter, Sam, to epilepsy. Purple is her color, and it made me think it was a little Sam-Wink! Mort the Port will forever have a spot in Trevor's memory box.

The following week was Christmas and then the next found us headed to Florida for Trevor's Make-A-Wish trip! What an incredible experience. The Make-A-Wish foundation is partnered with Give Kid's The World Village in Florida and together, they made our week absolutely magical. I realize that sounds so cliche, but it was a dream come true for Trev and such a great week for our family. Give Kid's The World Village was the resort we stayed at for the week. They had the sweetest couple at the airport to meet us & help us navigate getting the car rental and directions to the resort. Once we got to the resort, we had an orientation, tour of the grounds and an es**rt to our villa. The cafeteria was available to us for breakfast, lunch and dinner, they had an ice cream shop that was open from 7am-9pm and they encouraged ice cream for breakfast, lol! Everything was designed with kids in mind, even the tables and chairs were small! It cracked me up watching our grown sized kiddos with their knees up to the table at mealtime. They had some fun activities there at the Village, all geared towards littles, so Trev loved it. Wyatt and Cody were good sports and squeezed in, lol. Our days were FULL of as much as we could cram in! In the 5 days we were there, we went to Magic Kingdom, Epcot, Hollywood Studios, Animal Kingdom & Universal Studios. We averaged walking 9 miles each day and I was SO thankful for the wheelchair they provided Trevor! Although he hasn't needed a wheelchair aside from his three brain surgery recoveries, it was suggested we use one since his stamina is pretty non-existent. Even with the wheelchair, he was completely exhausted. The crowds were pretty overwhelming, especially at Magic Kingdom and we were so fortunate to have Express Passes. I wore a lanyard that had a bar-code for being a Make-A-Wish family and we were able to join in the express pass lane. We would only have to wait about 5-15min per ride where those in the standard line were 2+ hours. Trevor was in heaven!! That boy loves a thrill and the bigger the ride, the better!! Some of his favorites, he was able to ride back-to-back and he felt so very special. We were so thankful for all the suggestions and recommendations we were given before going as there was so much to see and do. There is no way you could do everything with just 1 day at each park so having some insight helped us navigate what to do and what could be skipped. Along with every big ride that could be ridden, I insisted on the iconic rides like It's a Small World and Pirates of the Caribbean. Not exactly thrilling but part of the Disney experience & it felt good to sit for a minute, lol. I also loved having the photo pass - all 4 boys rolled their eyes having to take pictures throughout the day, lol, but I felt like I could be more in the moment and not have to worry about having my phone out to take pictures since people were there to take them for me. Trev loved trying all the "Mickey food" and we were sure to try the turkey leg, butter beer, pretzel, etc. We all had different favorites and parts of each day, but we all enjoyed the whole experience, and I feel incredibly thankful for the time spent together and memories made!

Our last day in Florida we were supposed to go to Sea World but unfortunately, Trev woke up with a 102 temperature. Although we would have loved to go, we were all pretty tired and it gave us a reason to stay at the resort for a day and re-coup before our long travel day home. I felt SO awful making Trevor travel while he was so sick, but we didn't have any other option and of course he was a trooper. He slept most of the day and even with meds, his temperature fluctuated between 101-103. I was pretty worried that we wouldn't make it home & would end up in the hospital there in Florida. He wasn't doing well and there were a bunch of flights delayed & cancelled due to weather/freezing temps, etc. Fortunately, we made it home with just a few minor delays and I was so thankful. The following week was awful. Multiple trips to urgent care and 2x we were sent to the hospital. He was really sick and having a hard time with keeping his heart rate leveled and O2 high enough. Not that it was about me but let me tell you, I was over it, lol! After a very full/exhausting week of non-stop go in Florida to multiple very sleepless nights caring for a sick kiddo all while working full time and trying to keep up with everything going on - I wasn't sure we would make it!

After 9 long days home sick, Trev was back at school for about a week or so before his big eye surgery. We did all we could to help with extra breathing treatments, steroids, etc. as we didn't want him having surgery if his lungs were still weak. Thankfully, he improved little by little and was ready for surgery by the 28th. The surgery itself was done to help repair damage caused by the tumor. The tumor caused nerve damage to the nerves behind/attached to his right eye. Over time and increased pressure, his left eye began to compensate for the right and the left eye over developed muscles which was causing his eyes to pull and cross. The doctor's told us that the sooner we can have this surgery, after he finished his chemo course, the better. If we chose not to do it, Trevor's eyesight in his right eye would've gotten worse as he grows older and the left would've gotten even stronger, causing additional issues. So, they went in behind Trevor's right eye and did some repair work/re-wiring & then removed the muscles on his left eye, reattaching them farther back on the eyeball. The surgery itself took about 2 1/2 hours. Michael had to work that day, so I had planned to go by myself but my Mom ended up going and I am so glad she did. Recovery was rough. I kind of figured he's a pro by now and thought I knew what to expect. This was probably one of the most painful recoveries for Trev (which is crazy considering the types of major surgery he's had) and having an extra set of hands was so helpful. Waking up, Trevor panicked. Because of all the numbing of his face and eyeballs, he couldn't feel his face and couldn't open his eyes and didn't understand why they wouldn't move when he was trying so hard to have them respond. Then, once they started opening, all he saw was black. It took about 2 hours, oxycodone and a lot of deep breathing to get him settled. Once he calmed down, he insisted he had to go to the bathroom but at that point he still couldn't see & was hooked up to all the things, so Nana and I had to navigate that together, lol. I know I've said this before, but I'll say it again, the staff at Children's are incredible. His recovery nurse was amazing. So patient and quick to listen and respond. He jumped on getting Trevor calmed down, kept a steady stream of conversation going with him so he had less opportunity to worry/panic. Once we had Trev's pain under control and his vitals leveled out, we hit the road home. Thankfully he slept all the way home and it was dark by the time we got home. We were about 3 days of around the clock meds, wet towels and darkened rooms before he started feeling back to normal. He had some blurriness, double vision and eye wandering for about a week. We had his post-op appointment last Friday and the doctor said he is healing really well. Trev still has some discomfort when looking sideways, light sensitivity and some bloody discharge along with blood-shot eyeballs. It should lessen each day and within about 2-3 weeks, he'll be good as new. The redness is getting better already, he kinda looks like he has pinkeye right now as the redness fades, lol. We will have another follow-up in April where they will put him through a bunch of testing to ensure the surgery was effective and all is functioning properly.

His next Oncology appointment is March 14th where he will have his next big MRI scan of his brain. This will be the longest stretch of time, 6 whole weeks, that we won't be seen by someone on his medical team in Dallas, in over 3 years!! It already feels weird & like I'm forgetting something but I'm sure I'll get over that feeling quickly!

Although we won't be going for a medical reason, we will be making the trip to Dallas to be at Children's on the 22nd for Trevor's "Tell Your Story Workshop" for the 2025 Patient Ambassadors. Trevor is excited for the opportunity to help advocate for patients as a Children's Ambassador this year. This workshop is his first training session to prepare him for upcoming events, etc.

As I wrap up this long update, I want to say that I will be forever grateful for those that have continued to come alongside our family and support us. Each of you reading our updates, sending love and prayers, checking in with us, have been a huge part of our journey. This past week, I walked in the door from a really long day with Trev at Children's, on what felt like a week that would never end... to a crock-pot meal that my 2nd Momma & bestie dropped off for our family. Michael's parents, his brother & sister-in-law sent support on Venmo to help cover gas/travel expenses. Over the last month, Trev's teachers have been so helpful in keeping him on track with schoolwork, since he's missed so much. Those acts of thoughtfulness and love have been bright spots on some pretty cloudy days. I share this to say, our tribe has been a constant source of encouragement, from day one. We've felt surrounded by love and we are deeply grateful. We didn't know what the future would hold for Trevor and our family, and we still don't. Even in the unknown, I can say that we have held on to hope, in the darkest of times, with your love and support and we are forever grateful for you!!