Rest and Chemo

June 2018

After radiation was over we were able to have two full weeks off from the hospital! It would have been the longest time we spent outside of the hospital since February. We wanted to make the most of this much needed break, so we headed to Myrtle Beach, SC to soak up some sunshine and most of all family time!

We spent time with family doing all the touristy Myrtle Beach things! A couple of firsts too! The Pirate’s Voyage Dinner and Show was fantastic and LJ had a special part in the show!

We also went to Barefoot Landing to visit the Preservation Station by the Myrtle Beach Safari! It was amazing and we got to hold a few exotic animals and make amazing memories!

Unlce Ricky came to spend the day with us at the beach, along with Torie and her boys! We had so much fun just playing with our kids. LJ was not a fan of the water but loved playing in the sand. I also had never seen the ocean at a beach in South Carolina as blue as it was that day. it was beautiful and perfect. 

The Darnell’s came up and we took the kids to Broadway Grand Prix, where our big kids, aka Joshua and Daniel, had so much fun driving the race cars. and the little kids spent all our money playing the arcade games! 

Myrtle Beach, more importantly the family that lives there, has always been my safe haven. I have never felt more relaxed than I do in my Nana’s living room. So it was a no brainer that we would spend this time with her. But with this place of serenity comes very difficult goodbyes. I cry every single time I leave my Nana’s house. She is just the most beautiful and loving person in the world and being in her presence brings me so much peace. Leaving her house to go back to Cincinnati with our little family, especially LJ was painful. I knew this could be the last time I would ever see my Nana hug my little boy. It was also a very difficult goodbye for Emmaleigh. She has been raised away from family her whole life, she is used to visits, used to people coming and going. I wasn’t sure if it was her age or life circumstances, probably a combination of both. Our sweet girl could not stop crying as we drove away, watching my Nana stand on the porch waving goodbye. 

We had the opportunity to meet the new Ulloa baby boy in Columbia, it was so fun to see our girls together again too! We stopped for a much needed play break and cousin visit in Tennessee too!

Shortly after getting back to Cincy, we were visited by the Berrios family!! 

And then we had a mini Core group in Ohio! God is so good to us. He’s always blessed us with community everywhere we have lived, and now we were enjoying an established community when we needed it the most!

We celebrated my 28th birthday at Cincinnati Children’s hospital, putting LJ under anesthesia and allowing him to receive his post radiation MRI. It wasn’t my favorite birthday memory, but those results…best present a Mama could ever ask for! His tumor was smaller!! Definitely a cause for celebration!

Everything was all set for LJ to start the clinical trial! We had signed our lives away (think about as much paperwork as a mortgagee) and were committed to the trial with two oral chemos to combat this tumor in our little boy’s brainstem. He needed an overnight stay in the hospital to begin the trial, they had to take blood from him to monitor how his body was accepting the new medicines. We planned for Megan to come stay and hang with Emmaleigh, a special treat,  while Joshua and I stayed at the hospital with LJ. 

On the way to pick Megan up from the airport the rental van got a super flat tire, after dealing with that and finally getting Megan, we took a walk in Mt. Adams to get ice cream. Minutes after we started Megan got a phone call that her dad had a heart attack and it would be a few hours before we were able to find out that he had not survived. Megan was now in Ohio, taking care of me, and my best friend just lost her Dad. It was a frantic few hours until we took her back to the airport so she could go take care of her mom and herself. Megan left and the Barnes party of four headed to the hospital to start our chemo journey. 

LJ ended up staying for three nights due to the weekend and it just was more logical for him to stay instead of us running back and forth for the very often blood draws. Daddy and Em stayed with us the entire time until it was time for bed, they would go to our house in Mt Adams, then join us back in the morning. We had lots of family time in that little room and LOTS of LEGO Movie! 

We also got to hang out with Scooter, no big deal!

When LJ was discharged, Em and I got on a plane to head to SC to be with Megan and her family. Kyle and Remy picked us up from the airport and we got to surprise Megan. It was the best. And the time away with my little girl was just so timely and perfect. 

When we got back to Cincinnati, LJ was doing great taking his chemo pills and “yucky water” as we called it. It was gritty and very bitter tasting, but he was doing so great! We were able to attend The Hyde Park blast at the end of June! It was Myle’s second birdhday celebration and such a fun event! We never knew we liked to watch cylce races so much!

While at the Blast, I could see a little boy in a wheelchair being pushed towards us and I began to cry asI realized who it was. It was Bruce! This sweet boy and his family were the first family battling DIPG that I found on social media the day LJ was diagnosed. They were on their Make-A-Wish trip at the time and his parents used a hashtag that I searched for. Bruce was symptomatic, but such a joy. And his mom! I could go on for days about this woman’s strength and grace. Bruce was the first symptomatic DIPG child we met and the first child we met that has since passed. We love you Bruce and will never ever forget your beautiful face and loving personality.

Picture lovingly captured by Mikayla Chain.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s