We have been so lucky to spend the time surrounding LJ’s MRI’s at the Great Wolf Lodge. This time we were able to check in the night before giving us time to unwind before he had scans the next morning. I use the term unwind very lightly because regardless where you are in the world when doctors are going scan your kid’s brain tumor it’s pretty impossible to relax.
The first thing the kids wanted to do was eat all the snacks that I just unpacked in the room. Then they wanted to get their suits on and head down to the waterpark! We did just that as soon as the Varns (another DIPG family) got their suits on!
They played in the wave pool where we found another really cool surprise…Jackson! LJ’s greatest friend from our homeschool group in Englewood was staying at the lodge too. Bubby was so excited to have a kiddo his age to play with and Emmy was so excited to be able to enjoy the Varns girls without her little brother!
We ended the night with some balloon animal sword fighting in the lobby, the clock tower story, ice cream, Minecraft, and a really late bedtime.
The next morning we needed to leave the lodge at 7:15am to make LJ’s MRI arrival time. We woke up at 7:04 because somehow I was left with the responsibility of the alarm. Never a good idea. Lol! We made it on time though.
Emmaleigh stayed with the Varns family in the waiting room while Joshua and I took LJ back. Their daughter, Addison had an MRI an hour before LJ. We played with cars while we were waiting on the team to be ready and caught up with a nurse that had LJ post anesthesia after radiation in April 2018. Right before he went back he asked where his sister was. It was so cute, she’s been right by his side through all of this and he could tell she was missing.
This time they put him to sleep with just a mask with scented bubble gum air instead of accessing his port to put the anesthesia meds straight in his port. One less poke was good for this mama’s heart and the “Vader LJ” mask was successful too!
After he was asleep we went down to the cafeteria with our little girl and ate breakfast. Her and Daddy played a quick game in the Family Resource Center, then we all went to wait in the Radiology waiting room.
LJ woke up from the MRI so sweetly. Once he got into Daddy’s arms he wanted to walk by himself. He was clearly unable to walk, barely able to hold his head up but we let him try anyways. It gave us all a good laugh!
By the time we got back to The Great Wolf Lodge, LJ was back to normal and ready to go play! We started out slow and played a couple of rounds of putt putt! Emmaleigh got a hole in one! LJ played par his first round! They mostly just had fun playing with their friends. And we had fun decompressing after a crazy morning.
We spent the late afternoon in the waterpark, ate an early dinner with a table full of tired kiddos, and had an early bedtime.
This morning we woke up on time, packed up the room, and headed to the hospital to receive the results of yesterday’s MRI. We walked in confident and within 30 mins our hearts were shattered.
The tumor inside LJ’s head had increased in mass by 13% since his last scan in November.
The physical feeling of receiving news like this can only be related to, in my opinion, getting a phone call that someone really close to you had passed away. I have received too many of those types of phone calls in my life and it feels exactly the same.
LJ’s oncologist came in and she reassured us that everything was okay and nothing was changing as far as treatment plan goes. Next she sat with us and a spread sheet and explained how the tumor has behaved over time. Basically since his baseline/smallest measurement, LJ’s tumor has been measured around 20cm when you take the sum of all the areas they measure. It’s complicated and math that I can barely make sense of but seeing the “sum of products” increase and decrease by 1-2 cm each time is comforting. She also explained to us how they make “cuts” while doing the scan and because of angle of LJ’s head in the machine they allow room for error. They take all these measurements with a grain of sand and allow .3-.5cm room for error. When you look at pictures of the tumor compared to November it’s hard to believe there is any increase, much less 13%.
Overall the Doctor isn’t concerned. LJ isn’t showing any increase in symptoms. He is still running, jumping, and playing like he always has. He is fine on the outside, that is what our priority is… what is going on in his brain is Foulaid’s responsibility and he is in the absolute best hands. She is an angel on this Earth.
We ended our hospital visit with a crazy fun hand mold of all four of us, a surprise visit from Dragonfly with yummy gluten free treats, and medicine to begin cycle 22 of the clinical trial.
I’m not going to end this post by pretending we are great. We are okay. Hanging on for dear life as we ride this rollercoaster we never want to end. Today was hard. We’ve had a lot of really great days on this journey and a lot of really difficult ones. Honestly though, not all of today was hard. This morning was, then we spent the afternoon watching our kids play and I’m listening to them play pretend with their toys right now as I write this. The best thing about this cancer diagnosis has been the perspective towards life it has given me.
I wouldn’t feel right if I didn’t share that during this morning’s visit I had to leave the room the moment LJ came back in after we go the news of increase. I am a strong person there is no doubting that but I can’t be all the time. I went to the bathroom across the hall and sat on the flooring crying and praying that God would take this tumor out of my baby’s head. That isn’t God’s plan right now. I can only trust that whatever God does have planned for our family is good and for His glory. Right now I will rest in no change in treatment, a outwardly healthy little boy, and 12 more weeks until another scan. LJ believes he will see a victory because this battle belongs to God… and so do I!