August started out with one of LJ’s biweekly blood draws at the Liberty Campus of Cincinnati Children’s Hospital. It was the best blood draw yet. LJ sat on my lap, just me, a nurse, and of course nurse Emmaleigh were in the room, his port was accessed effortlessly while he chatted with us. The nurse called him brilliant! I will never take for granted LJ’s ease of accessing his port. Not every family has it that easy with their warriors and seeing them hurt or anxious is so tough on top of what they are already battling.
After that blood work came back great, and before the scan anxiety really started to settle in we took one last vacation. This time with Papaw and Mimi! We were going camping! We made SO many precious memories while sleeping in a tent for 6 nights! Emmaleigh caught her first fish! She said she wanted to catch a large mouth bass and our girl sure enough did!
We ate so many fantastic meals, had our first camp pies, and of course made s’mores! Em learned how to throw a frisbee! She was so proud. We enjoyed some campsite visitors for a weeine roast! The kids enjoyed the campground playground, ice cream shop, and little splash pad. It was one of the most relaxing trips we’ve ever taken.
We came home just to wash clothes, pack, and repack! We ran some errands, finally saw and fell in love with Toy Story 4, then Emmaleigh had her call backs for the musical Frozen Jr! After callbacks we drove to Great Wolf Lodge to get some rest before MRI the next day.
LJ woke up in the best mood. He had another later than I would want my child to fast MRI but he was so happy to be running the halls of The Great Wolf Lodge. We spent some time at the arcade to distract from being hungry before we had to drive over to Children’s. LJ’s port access went great and we walked over to Radiology. He was in a dancing mood while in the MRI waiting room. And he was telling all the nurses about pancakes and earthquakes while they were trying to put him to sleep. He woke up beautifully and had just completed MRI number TEN!! One day I’ll have to figure out how many times he’s been put under anesthesia. We headed back to The Great Wolf Lodge for some more phone-free fun!
Early the next morning we went back to Children’s for his clinic visit and MRI results. Our amazing childlife nurse was the first one to visit our room and she realized we didn’t have results yet, so she left the room to find out if we needed to be stressed or if we could breathe! She came back and told us we had nothing to worry about!! The nurse practitioner came in with the great news that LJ’s tumor was still stable and one measurement was smaller! I remember feeling complete shock. LJ was acting absolutely normally but I still knew what was in his head. I was confident that his tumor would be stable for the first time but I was scared to feel that way.
The time after MRI’s is a little weird. We are emotionally exhausted from having such high anxiety. We tried to jump right back into normal life and that started with Emmaleigh’s first cheerleading game!
Shortly after receiving a stable MRI LJ’s eyes started to look funny when he first woke up. Like a normal “I just woke up” look only it would last longer than other people. He would take longer to adjust to the lights. I would just have him close his eyes for a few seconds and he was fine. But man, everything like that is a reminder that despite stable the tumor is still there. His eyes looking “off” was one of his first symptoms and that is the source of the anxiety that I live with daily.
The next week we got to enjoy a Red’s Game and the Pilot House. We finally got to meet Jim and Beth, a couple who has supported us during this journey. Em and Beth really hit it off with their love for history. The game was a fun reminder that LJ is doing great, life is very much still enjoyable, and Marty Brennaman is a class act!
The last two weeks of August we were able to celebrate Joshua! Carrie watched our little nuggets while we attended his Senior NCO Induction Ceremony for making Master Sergeant. It was amazing to watch this man who wasn’t even thirty yet and going through everything we have been going through step into his new role of Senior NCO. Joshua is proof that working hard despite the hand you were dealt in life will pay off. To say that I am a proud wife would be an understatement.
Joshua also turned 30! Celebrating his 30th together was a lot different than his 17th birthday but weirdly just as fun! We are getting older that’s for sure and there is no one I’d rather grow old with!
Overall August was a dream. All of this DIPG stuff still feels like a dream, well really a nightmare, but August was a really great month! Normal. Vacation, stable tumor, cheerleading, and celebrations. During one of Emmaleigh’s football games LJ asked to go play with a group of kids that were about 100 feet from us. I let him. For that moment we were just normal parents watching our little girl cheer while her little brother played with the other bored younger siblings. Being normal never felt so good.