LJ began radiation and for six weeks our weekday mornings looked like this: On the first day of the week we had to wake up our fasted little boy with a cold cream to put on his chest. Then stop by the CBDI (Cancer and Blood Disease Institute) aka the oncology clinic at Cincinnati Children’s, […]Read More Ten Year Anniversary
Once we were home from the biopsy, in true Barnes fashion, we explored our new home as we welcomed many visitors those first few weeks. It began with a haircut from a wonderful woman that came to the house to fix LJ’s post-biopsy hair. She even gave our little princess a trim too! Jaden and […]Read More Cincy March Madness!
After meeting with Dr. Stevenson we decided to move forward with allowing a biopsy of LJ’s tumor. It was official, LJ was going to have brain surgery. They would make a cut in the back of his head, take a piece of his skull out, insert a very long needle while dodging good brain tissue, […]Read More Brain Surgery.
Saturday was another fun filled day but this time we took a break from the parks. We began the day watching the kids ride horses at GKTW. We were pretty surprised that LJ loved it and of course our little wild girl loved it! Then we went to a park in Orlando where we met […]Read More Make-A-Wish Pt. 3
After a fun night enjoying the resort, Tuesday morning we woke up pretty late, struggling on Alaskan time but eager to go play in the parks! Em and I went to the salon at the resort and she got he make up done while the boys caught up on sleep! We headed to Hollywood studios […]Read More Make-A-Wish Pt. 2
We were blessed with a rush wish by Make A Wish, Alaska & Washington and it was everything we could ever imagine. Our Make a Wish trip began with donation of matching family T-shirts from Ohana Creations and of course some Disney planning! It felt so good to be planning a Disney trip, it is […]Read More Make-A-Wish Pt. 1
Between February 13th, 2018 and March 4th, 2018 is the very short time I refer to as the stormy weeks. I really felt like we were riding out some sort of crazy storm only this storm wasn’t going to stop any time soon and the black cloud that hung over us was so unbelievably heavy. […]Read More Stormy Weeks
Most people who have followed LJ’s journey has at least googled what DIPG stands for or means I want to share some of the signs and symptoms LJ was experiencing for around three months prior to his diagnosis. We had just moved to Alaska so a lot of his symptoms my mind attributed to climate […]Read More Signs and Symptoms
Man, what a year it’s been. We went from we are losing our son and not doing a single thing other than make memories until he passes to living life every single day the best we can! Here we are a year later and slowly adding a normalcy back into our lives a little more […]Read More One Year POST!
We woke up early on the 13th, left Emmaleigh with my mom and went to Providence Hospital in a Anchorage Alaska. After 5 failed attempts at an IV a flight medic got it on the sixth and final attempt before we were rescheduling this appointment. LJ went back and Joshua and I hung out in […]Read More D DAY.