We flew straight from Orlando to Cincinnati, we had a few more fun days before our vacation turned into scan days. Mimi and Papaw were meeting us in Cincy for a special weekend celebrating our new 8 year old girl! But first we all met our dragonfly family at Shaw Farms to make some memories.
At the pumpkin patch we did all the fall things! Picked out pumpkins, got lost in a corn maze, and a hay ride! All while sweating in the unusually hot Ohio early fall weather.
We left the pumpkin patch and took the birthday girl to dinner at her choice, PF Changs! Then took the kids to a super late showing of the movie Small Foot! It was adorable and our kids were adorable watching it!
Mimi and Papaw were heading out the next morning while we were getting ready to go to a Bengals football game! It was LJ’s first NFL game and the Bengals were playing the Miami Dolphins! Emmaleigh’s first NFL game was in 2013 and was Bengals vs Dolphins in Miami! Carrie went with us and we had such a great time!
The Bengals has two players from our hometown. Of course, AJ Green from Summerville and Carlos Dunlap, who attended Fort Dorchester High School. Robert Quinn, who I went to middle school with now played for Miami. During the game I remembered that Robert had a brain tumor his senior year in high school! After googling I found that it was a benign tumor that was removed and he was scanned often to make sure it did not return. It was still pretty neat that a man with a shortened senior year because of a brain tumor was still picked up by the Tarheels and drafted into the NFL! LJ had fun dancing and being crazy boy! Em was happy when we left! Lol!
The morning of the 10th we went in early for LJ’s MRI. We waited and waited then we are taken back to another room to wait and this time Joshua and I left Em with a nurse so that we could both take him to be put under anesthesia. His port was accessed, so all they did was put the meds in his line and our beautiful baby boy was asleep! We scooped up our brave Em and went to the cafeteria for breakfast. He was done with his scan after about 1.5 hours and I went back to recovery while he woke up!
Once he was awake and semi recovered, we headed to a Bengals’ practice! I say semi because when we got there he was still feeling affects of the anesthesia and wasn’t letting it slow him down one bit. So he was swaying and stumbling around all while still being LJ and making us all laugh! It was sprinkling a little so the kids got to hang in a golf cart with a wonderful man who was security. This man had a son who was also a Dragonfly and a cancer survivor. The world is really so small and childhood cancer really is not rare. AJ gave Joshua an awesome gift too! A game day jersey!
We left practice and went to check in at the Great Wolf Lodge! The GWL is the best place to wait for MRI results because you can’t really use your phone while playing in a water park so we couldn’t just sit there and refresh the mychart page over and over. Even though they send you an email that the results are in the account, we always sit and refresh just in case. It’s crazy, but it’s our reality. We spent some time enjoying our kiddos and playing in the water!
I don’t remember if they called us, we saw it in the chart, or if we didn’t know until we got to the appointment the following morning. I think it was the following morning though, in person. I think this was the trip Childlife scooped our kids out of the room to go on an adventure while the team broke the news to us.
LJ’s tumor had grown…again.
About the same amount as last time, overall it was about 29% larger that it was when he finished radiation. It is physically painful to hear news like this about your child. But there was a good possibility that it was pseudo progression, meaning meds are causing inflammation making the tumor look larger. There was also a chance that it’s just progression and LJ would decline quickly after being in progression.
Clinically LJ was doing fantastic! And left the hospital singing “No hurt, only medicine!!” and running to the elevator.
The team gave us the option to give this trial one more month, do another MRI in November, and go from there. We chose that. His tumor had grown…only a little bit but growth is growth. That morning wasn’t easy, we had quite a few uneasy mornings. The month we were waiting on the new MRI could have been full of worry about the scan but we choose to let God fight that battle and we were soon on our way home to enjoy our boy and our family.
The LORD will fight for you; you need only to be still.
Team Barnes flew home separately the next day. The military paid for LJ and I’s flights and we found cheaper rates on a different airline for Joshua and Emmy. LJ hilariously flew from Cincy to Denver without a shirt on because if he was being forced to nap he wanted to be like Daddy and at this point that just wasn’t a battle I was willing to fight. Once he was asleep and I was alone for the first time since news of growth of his tumor, I finally broke down. Everything hit me that my perfect boy with his precious little fingers, chubby soft cheeks, and long eyelashes, had a port in his chest because he had cancer. LJ still had a DIPG brain tumor that was trying to kill him and that wasn’t going to change anytime soon. There wasn’t even much i could do about it. I could only pray and hand my child’s life over to God every single day. I prayed that God would give us more time, that he would provide a cure for this unimaginable diagnosis, and that he would give me peace to stop my uncontrollable sobbing on that plane.
We all arrived safely home and quickly switched gears, preparing to enjoy the holiday season! It was going to be a difficult one but we were going to make it the absolute best! All while LJ learned the super cool new trick of turning his eye in whenever he wanted to… I hope you can read my eyes rolling! This is obviously a major DIPG symptom and was really hard to see just after hearing his tumor had grown.
We ended the month with Halloween fun! Trick or Treating around downtown Anchorage!
Trick or Treating again in the frozen tundra with our friend’s the Tulley’s! LJ was super duper warm in his snowsuit with his Sully costume over it! Em was warm too with her snowsuit and Hogwarts robe over it! Our little Hermione was just beautiful and LJ was loud as ever when he roared at random people on their doorstep while they tried to give him candy. It was hilarious and we made memories that night I would never forget.
We were halfway to another scan and felt so much peace as we enjoyed every moment we had together.