The hardest part about traveling back and forth from Anchorage to Cincinnati was transitioning back to “normal life” when we were home. It was a constant packing, unpacking, and laundry. Always planning and arranging the next trip, it was really hard to be present while we were home. But we tried… really hard! Keeping Emmaleigh in activities like the homeschool CO-OP, dance, and American Heritage Girls helped!
Just like that it was time to fly back to Cincy and after the last scan, we were all going!
We checked into the Great Wolf Lodge and hopped over to the Liberty campus to get LJ’s port accessed. He was having another MRI early in the morning.
When we got to the hospital the following morning, they had new gowns that they wanted the kids to wear during MRI. So we had to take our already nervous LJ who was dressed in clothes without any metal and change him into the gown. He was not exactly happy about it and honestly I wasn’t either, it was just another unnecessary thing that made him uncomfortable.
After the MRI we took the kids back to the lodge to play MagiQuest. It was something LJ could do from a stroller while he was recovering from anesthesia. Which he did very quickly this time and was running around the lodge in no time!
Sitting in the warmer pool playing with LJ, Emmaleigh in the wave pool because that is where she lives at the GWL, Joshua ran to the room to check a voicemail from the doctors. I felt like the world stopped spinning until Joshua got back. But when he did…he had news that LJ’s tumor was stable!!!
It even looked SMALLER.
It was Monday, clinic would be on Thursday, and we flew home Friday. With news of a smaller tumor, we could now breathe and enjoy the trip! So in true Barnes’ fashion, we bought matching pajamas to celebrate!
At clinic, the doctors said everything was looking great! Smaller, even by centimeters was always great! LJ was clear to start another cycle of clinical trial meds and we got ready to head back home!
Shortly after, like the day after we landed, Emmaleigh and I got to go to a mother daughter tea party and lock-in with her American Heritage Girl’s troop! It was so nice to spend some one on one time with Emmaleigh and see her interact with friends. She was still my very happy and friendly girl. I was so encouraged by God that night that Emmaleigh would be okay through all of this.
On November 13th, 2018, LJ got to celebrate 9 months post diagnosis. It was a milestone that was terrifying. The first doctor said 9-12 months. I was certain LJ would die at some point during the 2018 holiday season and here we were about to celebrate Thanksgiving and our boy was dancing! More importantly, thriving!
About a week later, LJ felt warm and sure enough, he had a fever. Right at 101 degrees. I, being Emmaleigh’s mom, was used to fevers as Em was often 104+ when she was glutened. But when you kid has a port you have to treat fevers differently. We had to take him to the ER so they could begin “just in case” antibiotics. A trip to Providence Hospital…the place where he was diagnosed. When we arrived, normal triage stuff happened, they slowly accessed his port, and after contacting Cincinnati Children’s they went ahead and started fluids and antibiotics. LJ had an appointment the next day to have his port accessed for clinical trail bloodwork so I kindly asked them to leave him accessed and the oncology nurses would de-access him in the morning after his bloodwork. The ER doctor told me that they could not do that. They did not feel comfortable leaving his port accessed. That was the whole point of having this device placed in my son’s chest to make his journey easier by minimizing the amount of pokes he needed. I told them they could call Cincy and see if the bloodwork they took tonight would be sufficient for the bloodwork the following day and if it wasn’t we were leaving with him accessed. The blood work was fine, LJ was de-accessed, and we didn’t have to come to the appointment in the morning!
On the way home we decided we needed to try to get out of Alaska. We didn’t feel comfortable with that hospital taking care of our child. Not after experiencing Cincinnati Children’s Hospital and the quality of care LJ received there. If he ever needed a shunt, g-tube, or even hospice care, we didn’t want it to happen at that hospital.
It was almost Thanksgiving and wow did we have so much to be thankful for! LJ was doing better this Thanksgiving than he was the last. Thanksgiving 2017 is when we really started to notice things were not right. We were just so thankful to be together as a family for another holiday! We wanted to host a meal for our neighbors who had been so good to us when they barely knew us! So I, with my right hand event planner Emmy, planned a dinner for our friends and a mess of kids!
We spent the actual day of Thanksgiving with the Prather family! Pies and all kind of other food for days! The day after Thanksgiving we started decorating for Christmas and putting up our trees!
After the trees were up we were ready to share the news officially…we would be moving to OHIO! We took really fun pictures in our home and made a mess with oobleck.
I captioned the picture with “2018 has been a little messy to say the least! And we are going to start 2019 with a mess too! A mess of a PCS! Yes, the Barnes family is on the move again... this time to OHIO!!! Here we come Wright-Patterson AFB!”
It was so true, but it was the most beautiful mess! The PCS (permanent change of station) to do list is always intense and this time we would have the Christmas season, what could be the most important Christmas we’d ever celebrate, right smack in the middle of it! Oh…and an Earthquake.