Christmastime Chaos

December 2019

December had finally arrived. “The most wonderful time of the year” was here and we were a solid party of four. Looking back on it I still can’t believe we have celebrated two holiday seasons with a DIPG diagnosis. When I tell people LJ was given 9-12 months they usually look at him then back at me like I’m crazy. I want to be very clear that LJ is not the norm. This monster is taking precious children and adults daily. Most families who have walked the journey with DIPG lose their child within the 9-12 month time frame. So to have had the opportunity to celebrate two holiday seasons, normally, with LJ is nothing short of a miracle and we are beyond grateful. 

Amazing JOY captured by Melinda Benbrahim Photography

We started December with a Star Wars event at our church, First Christian Church of Huber Heights. It was such a well done event and complete with a visit from some of our old friends of the 501st Legion! It brought back all the memories from our Make-A-Wish trip from March 2018!

Our friend, Alskan Vader made this amazing video!

The next day we made one of Joshua’s dreams come true and we went to cut down a Christmas tree for the first time! He was also making my dreams come true by giving me a second tree for the “family” ornaments! It was so cold but we had so much fun picking out the perfect tree. 

After we had another beautiful tree to look at, we spent the next day at the Cure Starts Now. Over 150 families affected by DIPG joined together virtually to raise money for the Home Run Cure. There were about 20 families present at the Cure Starts Now office that day. Most had lost a child to DIPG, a few had a child living with limitations caused by DIPG, and there were a few who were past one year post diagnosis. When we are around families that have lost a child I feel an immense amount of guilt. Why? Why is their baby gone and not mine? Why is LJ running around like a regular child and after diagnosis their child never walked again? I met so many moms that day that encouraged me by telling me that seeing LJ is a joy. They told me they know that their child’s life was given to help children thrive with DIPG with the hopes to one day rid the Earth of this tumor forever. My heart felt much lighter and I was able to let go some of the survivors guilt I had been dealing with since we passed the 15 month mark post diagnosis. 

The strength that filled that room was something I will never forget. A place and position I would not wish on my worst enemy but at the same time I was grateful to be apart of the group. Meeting all those families made me feel like our family would be okay, no matter what, we would be okay. And together the families raised $273,987 so there’s that too!!

We had clinic that week too. LJ started round 20 of the clinical trial, we got to see the Varns family, but we also saw another DIPG family receive terrible news about their child’s tumor. It’s never good when the oncologists take you to a conference room without your child. We watched them walk pass our room strong and confident and come back by broken and defeated. Moments like that bring back memories of the beginning of the trial when we had a few “bad scans” only this was much worse. This family was being told that there was nothing medically left to do at Cincinnati and their home hospital would be able to take care of them for the rest of their child’s life. That is the reality of DIPG.

That is the reality of DIPG.

Now that we had LJ’s next month of chemotherapy it was time to enjoy all the fun of the Christmas season! Right after clinic we got Em’s ready for an ugly sweater party with her American Heritage Girl’s troop. She had so much fun at the party and amazes me everyday how she can be at the hospital in the morning and playing with her friends in the evening. She is a true super sibling. 

The next evening Joshua and I went to his work Christmas party and enjoyed a couple of hours without our precious kiddos! There was provided childcare so they were just down the hall having the best time too!

Saturday of that week was a fun filled day of Reds Fest and Trolls Live! The Dragonfly Foundation provided both of these fun opportunities. At Red’s Fest we hung out in a room next to where the players lounge was and as they left for various events they would stop by and hangout with the kids. Emmaleigh was the Spot It champion of Red’s Fest! No one could beat her, well maybe Stephanie, but all the baseball players and even Marty Brennaman didn’t stand a chance against our Spot It queen! LJ had fun throwing a ball as usual!

Emmaleigh went hunting for the first time! This kid woke up at 4am and braved the cold for as long as she could…which was before the sun even came up! Her and Daddy took the sweetest nap afterwards.

We kicked off our Christmas traditions with building Gingerbread houses! I have to bake the gingerbread from scratch so our Emmy can enjoy the festivities. It is delicious and our houses are super sturdy so there are definitely some positives! Em wanted to fake pose for a picture and LJ spent his time eating the candy.

December 13th, 2019 marked LJ being 22 months post diagnosis!

And the very next day was the Dragonfly Foundation Holiday Party! We got to hangout with our friends and make new ones! LJ has a new bestie, Rosie Red. Em found a little girl squad to hang out with too! Santa even came and gave out gigantic candy canes. It was a really great night!

We visited Kings Island Winterfest the next day! Snow and all! It was magical and so much more than I thought it was going to be. Pretty sure it was the friends we were with though! Em loved being embarrassed by me on the merry go round. LJ liked riding rides and eating the snow. One ride he rode got stuck because of the weather and I had to go get him from the car on the track.

We had a homeschool Christmas get together the next day at a friend’s house. The kids had a blast playing with a bunch of wild friends in the snow. They did a white elephant gift exchange. LJ was the first to have a gift stolen and he handled it so well! He was happy that one of his friends had the gift he had.

After a very busy four day weekend we took a few days to slow down. Also because LJ was complaining of pain in his legs. Older children on his trial complain of joint pain often. Some are even on medication to help with the pain so when LJ has complaints about pain we try hard to remember that first. The hard and alarming part was that he began walking like he was first diagnosed. Sort of stiff legged and jerky. Watching any of those initial symptoms come back, even in the slightest way, will make your stomach drop. It is so scary and is usually the first sign of progression. After only a day or two his pain and walking both improved, just in time for another round of blood work. 

This blood draw was one of the most difficult LJ has ever had. The nurse got the port accessed on the first try but his blood would just not come out. We tried everything. LJ taking deep breaths, raising his arms, flushing with a lot of heparin. He looked like he was about to pass out and finally another nurse decided to syringe pull some blood out and just move it to the test tubes. LJ did all of this without a single fuss or tear. He for real is the strongest little warrior. 

Back to our Christmas fun that evening, we had a blast making some grinchy snacks and watching The Grinch!

We went to Carrilon Park and enjoyed the lights and Christmas fun they had. We all tried chestnuts for the first time and we think they taste like boiled peanuts! We waited in a long line to ride a train but it was so worth it because the kids loved it! We got to take some great pictures and make some awesome memories!

The Sunday before Christmas Eve the kids got to sing on stage. They sang “Drummer Boy” and it was the cutest thing I’ve ever seen. Not bias or anything! 

After church we went back to Winterfest at Kings Island because we really had that much fun the first time. We tried to do all the things despite the very cold temps. The kids wanted to ride the rides, we watched some shows, and tried blueberry hot chocolate! 

The kid’s favorite movie this Christmas season was Home Alone! They watched all 3 Home Alone movies multiple times. Listening to LJ crack up at the bad guys getting hurt when they tried to break into the house was hilarious. I think we watched just that part at least three times. But I think they loved Polar Express night the best because they had friends over! We had a yummy dinner and of course hot chocolate! They played with their friends and even put on a few skits for us.

We attended Christmas Eve service with the kids. When LJ started getting antsy the elderly couple next to us drew on the bulletins with him. It was so sweet watching them swoop in and take care of LJ in that way. We were able to enjoy the service while LJ was entertained. The woman also gave me all the flashbacks of doodling in the bulletins at church with my Grandma when I was little. It was another sweet memory that I’m sure I will treasure forever. When we got home we put out the reindeer food and cookies for Santa and sent the kids to bed as early as possible!

Santa and his elves went to work that night and boy did they deliver! When the kids woke up, we sang Happy Birthday to Jesus, then kids ran to their full stockings. Before she really looked in hers she went to look at the surprise out the back door and saw a trampoline that Santa put together in the freezing cold the night before! She was SO excited!

LJ was so grateful for everything. He loved watching us open our gifts too. And expected hugs as thank you’s. It was so sweet watching our kiddos hug each other and be so happy to give each other gifts. LJ loved the power ranger mask Em got him. 

We went to the Wolf’s for lunch and they kids were so happy it was warm enough to be able to jump on the trampoline at their house. Heidi got Emmaleigh and I the most beautiful brain/childhood cancer awareness earrings. Ems loves matching me and the earrings are just perfect! We had a wonderful meal with their family then headed home to play with toys and spend more time on their very own trampoline! Christmas Day ended with a very early bedtime for all four of us!

The day after Christmas we left the crazy mess behind, packed up and got on the road to West Virginia to spend some time with Joshua’s Dad and the Nesselrode’s! It was a very restful and at the same time fun visit! The kid’s both got presents they adored. Em’s loved her new tennis shoes and LJ loved his new baby doll that he name Star Shine. 

We drove back home to sleep and drive down to Cincy the next day. We had the opportunity to go to the last Bengals game of the season! And we had the very special opportunity to be guests in AJ Green’s personal suite. His amazing wife, parents, and of course little Eazy hosted us and the kids. It was so nice to meet Miranda and catch up with Mr. and Mrs. Green. It’s no wonder AJ is the type of person he is with a family like that standing behind him. They were amazing. The kids had so much fun playing together. The little guys are actually dinosaurs but kept their roaring to a minimum lol!

That night we had a crazy storm with high winds. I woke up and thought about the trampoline but fell back asleep anyways. When I woke up the first thing I did was look outside and the trampoline was completely gone.

Ya know, #aintnopartylikeaBarnesparty

I was just hoping that the thing didn’t flying into anyone’s windows. It hadn’t, a tree in our neighbors yard luckily stopped it. Joshua came home with the stuff to anchor it. I guess Santa was too busy Christmas Eve to remember that part!

We ended the year with LJ learning to cock nerf guns and that has been both a blessing and a curse. 

2019 had been such a wonderful year. Despite our circumstances God had provided us with so many opportunities for joy and happiness among all the clouds. He really is so good and faithful.

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