A Month at Home!

June 2019

June was a whole entire month that we did not leave the state of Ohio. We did not even venture into Kentucky. This is why we asked for humanitarian orders from Alaska. We needed some stability and man, not unpacking suitcases, well except for that last weekend, feel SO good. Just cooking meals, taking out trash, and unloading dishwashers… it really was a breath of fresh air after many months, 15 to be exact, of traveling. But in true Barnes fashion, we weren’t just going to sit still!! We had a full month full of visitors and lots of fun!

One of our favorite things about being blessed with a home is opening it up to others! It’s what we live for! Something just feels so alive about a home that is full of laughter and loudness! Well it’s not like the Barnes household is ever quiet but when we add a few it does get a little louder (if that’s even possible). 

The first visit in June was from our Air Force family! Jealine, Sophia, and Liam! We went through a deployment together in Homestead, FL and have remained friends since. We are so lucky that they are from Cincy and as long as we are at Wright-Patt AFB we will see them! Even though they did get orders to Anchorage this summer and are living there now. That’s how it works though! Our girls always enjoy seeing each other and it’s super cute watching Liam and LJ get to know each other! I of course loved visiting with Jealine and her little bump too!

Next up was Adventure Week at First Christian Church! It was kinda like Vacation Bible School, a drop off program that even LJ could attend. Last year when we spent the summer in Cincy I desperately searched for a VBS that both the kids could attend. Most vacation Bible school’s do not take un-potty trained three year olds so I couldn’t find one that would work for us. I was heartbroken. I just knew that LJ would never be able experience VBS and I really wanted him to. I remember feeling so sad about it and thinking oh another thing he won’t be able to enjoy because this tumor is going to take him from us. When summer 2019 came around and I realized that LJ would be able to attend a VBS and enjoy it to the fullest I was so happy. I know it might seem like a small thing but it was such a big deal to me and dropping him off was so surreal. They both enjoyed the time away from me, learned so much about Jesus, and made some new friends!

We were able to attend The Dragonfly Foundation’s Kings Island Day…for the second year…as a family of FOUR! All the “firsts” after a cancer diagnosis are bitter sweet. You have to constantly fight the thought of something being “LJ’s last time.” When the time comes to celebrate or do something for the second time, the thought is still there but we were able to be more present in the actual moment instead of treating it like the last time. We spent the day enjoying our Dragonfly family, our family, and our wonderful doctor!

The following weekend Joshua and LJ got to join Jake, Jaden, and some other men and go camping for Father’s Day. LJ found his love for casting a fishing pole and all the father and sons camping got to enjoy LJ’s waking up with the sun!

Most holidays would not be complete without a little trip to the ER for some excessive vomiting from Em. She had been glutened and our strong girl just could not stop vomiting. I finally took her in, got her some Zofran, and her tummy settled down. We spent the rest of Father’s Day cuddled on the couch with LJ playing nurse to his big sister!

My mom came to visit! It was so nice to just sit around and hangout with my mom! The kids adore her. While Nana was in town we celebrated my birthday, and had a clinic visit! LJ started cycle 14 of his clinical trial and we had to say goodbye to another amazing neuro-onc fellow. We miss you Erin! We Know you are defeating DIPG elsewhere!

My brother Ricky and his crew, Cody, Ava, and Amy came right after mom left! It is so much fun having our kids together, despite the giant age gaps there is no doubt the kids adore each other! Highlights from their trip would have to be low country boil, disc golf, wild + free, and Kings Island!

LJ was the ambassador for The Hyde Park Blast. it was amazing to watch him run in the kid’s race and cross the finish line on his daddy’s shoulders. We never in a million years could have imagine LJ thriving as he is now at last year’s Hyde Park Blast! 

We jumped right into July with a super last minute surprise visit from Kyle and Remy! We spent the Fourth of July together and took our wild bunch to Kings Island too! Both boys learned they could swim on their bellies in the shallow pools of the water park! Emmaleigh is still a fish and loved the wave pool the most!

Lastly we spent a week with Grannie, Joshua’s mom. We took the kids to Kings Island again, obviously trying to squeeze every bit out of this summer weather! Emmy and Grannie stayed in the wave pool most of the time and LJ got super brave when he tried and fell in love with a new slide!

It was another whirlwind month in casa de Barnes! It was a month that felt extremely normal, and any normalcy is welcomed with open arms. We feel extremely blessed that we are where we are right now in LJ’s walk with DIPG. We will continue to make all the memories and make every day count! Making memories in our new home for a month solid was pretty special! 

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