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, for his port to be accessed.
- Then a super quick drive over to the Barrett Cancer Center at the University of Cincinnati hospital (they don’t have the Photon radiation machines at the children’s hospital) and scan his card to let them know we were there.
- A nurse would then walk us back and I would sit in a chair and hold LJ while they got his port line ready for meds. The anesthesiologist (whoever was on rotation from the children’s hospital) would begin the drugs to put him to sleep. He would fall asleep in my arms then we would move him to a table and Joshua and I would leave the room.
- After we left, they began oxygen and put on his mask that held his head completely still and had markers for where the beams needed to be pointed to LJ’s head.
- After about 20 mins we would walk back to recovery where a children’s recovery nurse was sitting with him until he woke up.
- Most of the time he was sweetly sleeping with the marks from his mask on his forehead.
- Once he was semi awake, we carried him out to the car and went home for the day!
- On Fridays, they would deaccess his port before he woke up because tearing the tape off his chest was terrible!
The first day of radiation was also the first day of the Homeschool convention in Cincinnati, so after we got him home and settled with Nana, Joshua, Emmaleigh, and I spent sometime together at the convention! Call me crazy, a bad mom, or whatever you want, but I longed for some normality and time focused on something other than a cancer diagnosis. Of course, God would use this homeschool convention as a beautiful blessing in connecting me with a homeschool community in Cincinnati! Thank you Sarah Mackenzie of Read Aloud Revival!! LJ was happily with his Grannie and Nana, Emmy was having a blast in the kids program, and I was learing how to be a better homeschooler and spending time with Joshua. It was kind of a perfect weekend. LJ joined us at the convention on Sunday!
Monday came and we began another week of radiation.
During radiation we went to a park to meet Myles, his sweet mommy Sara, and childhood cancer advocate Mikayla. This would be the first child I would meet with DIPG. Myles is such a miracle as he was diagnosed when he was just 3 weeks old and is now almost 3 years old! He is truly beating the odds. Words can not explain what it felt like to meet another mother whose child was fighting DIPG. I wont even try.
There was another pediatric family receiving radiation right along side of us, but we would only see each other when the other family was carrying their half asleep loopy baby down the hallway to leave. We wanted so bad to ask them what type of cancer brought them there but we never did. Until one day, Mom of the year over here locked my child in the car after he received radiation. We put him half-asleep in the car and somehow it locked without either of us in it but the keys were inside. I went back into the hospital to get help and when describing the car, the Dad overheard me and came out to help. He worked at a Chrysler dealership and began calling Chrysler so they could remotely unlock our car. Hospital security also came and had the car unlocked so fast! LJ was completely fine, he pretty much slept through it all and we got to finally introduce ourselves to this family! A few days later they stopped (while toting their sleepy kid) and asked if we could use some coloring books, we declined but I asked what type of cancer their child had. When the mom said DIPG my jaw hit the floor. I could not believe I was sitting in a waiting room with a family walking this exact same path with us at the exact same time. Again, words can’t describe that feeling of being completely connected to a stranger.
The full 30 rounds of radiation went without any mishaps! Twice he threw up after treatment and that was only because he was given medicine to clear up his congestion. He was a little more tired, his appitiate and taste for foods changed a little, and his hair did fall out. But that only lead to a super cool haircut by Cincinnati’s 5-Star Barber, “The Official Barber” of the NFL’s Cincinnati Bengals.
The Darnell family came to visit us! We went to the Newport Aquarium and petted penguins!
They helped entertain the kiddos while Joshua and I snuck away for one night to celebrate our 10 year wedding anniversary. We were supposed to go on a 7 day cruise for our anniversary, we had flights booked and one more payment on the cruise that I was going to pay the week LJ was diagnosed. We spent the morning of our anniversary in that radiation waiting room and we would later find out that the other DIPG family was celebrating their 10 year wedding anniversary in that waiting room too! It defiantly wasn’t the anniversary I had planned but it was pretty perfect, despite the hotel construction! lol!
Watching God take such good care of our LJ during radiation was comforting but I knew he would. What I didn’t expect was all the ways he provided for our entire family. The connections we made with a church, memories we made together, and all the new people we met during the 30 rounds of treatment was totally a God thing.