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 Deanna were still visiting and Papaw and Mimi joined us too! We took a trip to The Ark Encounter in Kentucky! It’s a huge, life size rendition of what Noah’s ark would have looked like. It’s obviously massive from the outside but the inside is where it’s really neat! It was laid out like the ark would have been, with spaces for all the animals and humans that were on board. It showed you how they were fed and watered and how everything was stored on the ark. It was a really neat experience and was a physical reminder of the hope in God’s promises.
But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.Isaiah 40:31
God promises all those who believe in him eternal life, He does not promise an easy life. In fact, he says the opposite
In fact, everyone who wants to live a godly life in Christ Jesus will be persecuted.2 Timothy 3:12
A lot of Christians walk around in their happy bubbles loving God, until something bad happens in their life, then they blame God or at least question him. People often commend my faith, I’m really just following orders. I just take this life day by day doing my best to be a light until God calls me home. It’s not easy and I can’t say I haven’t asked God MANY times why He chose this path for my family. Right after LJ was diagnosed, I think it was day 3, I was grabbing a coffee cup and crying because that’s kind of all I did for a while and I asked God, “what did I do to deserve this? Why me?” and it hit me that no one deserves this and if it were to be anyone let it be me. Let believers endure the worst of this world and let it all be used for God’s glory.
LJ had another surgery on March 28th, 2018. This time he would be receiving his mediport. A port allows for easy access to a vein for blood work, chemotherapy drugs, or any IV medicine. It was placed in his chest right above his heart and to the right a little. Knowing LJ would receive 30 rounds of radiation where he would be put to sleep each time made the decision to get a port easy. Instead of searching for vein every time, he would have his port “accessed.” That means that an hour prior to an appointment we would apply a numbing cream called EMLA to his port, the nurses would then place a pretty large needle straight into the port and get the vein on the first time! There were a lot of tears at first because LJ has to be super still while they access it and he just doesn’t want to be held still, but he isn’t being hurt and that makes my mama heart happy! The port also allowed for him to be accessed on Monday and deaccessed on Friday during radiation weeks which meant less pokes overall!
Our time with Papaw and Mimi also included a wonderful first trip to the Cincinnati Zoo, meeting with the Easter bunny, and dying and hunting for Easter eggs in Mt. Adams!
Grannie also came to visit and we got to go to Monster Jam! LJ (and Joshua) was super into monster trucks at the time and we had so much fun at the show. We got to go down into the arena and meet the drivers.
Emmaleigh was so excited to see the Wonder Woman truck and meet the driver, Collete Davis!
It was so fun being somewhere were my loud kids could be as loud as they wanted to be and no one noticed or cared.
We also were visited by my friend Melanie and her family. These friends were more family from our church in Homestead, FL and it was so nice to know they only lived four hours away from us now. We all went to the zoo together and froze, but it was so much fun and left us feeling so normal.
Then there is the Wolf family. They were part of our Core group in Homestead, Fl for six short months before they moved back to Ohio. And here they were, a little over an hour from us. It was so nice to be around their family again and have really good friends so close. It is insane how God pieced all of this together and we knew that Cincinnati was for sure the place where LJ needed to receive treatment.
Now we were semi-settled, we at least had an address, our neighbors in Alaska who had been collecting our mail since we left, mailed us some of our packages!! So many of our friends showed us so much love through such thoughtful and kind gifts. Opening that mail really was like Christmas morning!
The day before radiation, I was so nervous. We were about to send beams into our son’s head that could do nothing to this tumor and leave him deaf, among plenty of other risks, or could shrink this monster and give us more precious time with him. So I did what every sane parent would do and put a temporary dye in my other kids hair! Of course, she picked a pink/purple and it was gorgeous, fun, and such a great memory.
When your child is diagnosed with DIPG you are normally given the treatment plan of radiation, a honeymoon period, then end of life care. It isn’t optimistic, it isn’t hopeful, it’s actually horrible. But this is all the families have. We were about to start radiation; the timeline was more terrifying then the treatment itself. We were about to push play on the ticking timebomb of our honeymoon period with LJ. I was so afraid to start radiation because I didn’t want it to end. I had put it off long enough and the team at Cincinnati gently pushed us to begin treatment. The average honeymoon period for DIPG tumors is about six months. I didn’t want just six more months with my baby.