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!!
