Roller Coaster

Jace’s birthday was a great day. He felt well, and when daddy returned home from work we took Jace and Hayden on a short drive to the mountains (one of their favorite places). The mud was so thick, we all screamed with laughter as it splattered our windows and bounced us around in our seats. It was just what Jace needed to help him remember how fun life can be. Later in the evening, a few close family members brought gifts and sang to the birthday boy. Our beautiful cake was delicious (baked and decorated especially for Jace by a friend), and we had a wonderful evening.

Little did we know how quickly our roller coaster ride would drop. We thought Jace’s chemo treatments Tuesday at Primary Children’s Hospital would be intense, and they were. We left home at 5 AM, and arrived in SLC in time for his appointment at 9:30. Jace had to go to the hospital fasting because of later procedures, so his last meal was the night before. On the way to the hospital we also apply Emla cream to Jace’s port to help it become numb for access. This means, as soon as we get to the hospital, a nurse places a needle into his port, and it remains there for the rest of the day. Instead of through a typical IV most meds can be administered into the port. After a thorough check-up and blood draw, Jace was sent to the RTU for his Lumbar Puncture (spinal chemo treatment). Jace was put to sleep through this procedure, so we waited in a hospital room while he endured the ordeal. This week Jace also had to receive PEG shots into the muscles of both legs. After all of this, Jace also received Vincristine in his port, a final chemo drug. Would you believe that during all of this Jace didn’t shed one tear? At the end, he was just relieved and ready to go home as he ate his Mac n’ Cheese outside the hospital on one of the benches.

As we drove north though, Jace complained of a headache, and he felt warm to the touch. We didn’t have a thermometer, so at Centerville we pulled off the interstate and ran into Target to purchase a thermometer and some Tylenol. While we were pulling away, I quickly gave Jace the thermometer and his temperature read 102.7! NOT GOOD. I quickly gave it to him again. 103! In the past we have been instructed that if Jace’s temp was 101.3 or higher, we were to quickly call specific numbers for assistance. We called from the parking lot of Target, and they said to immediately check him into the closest ER. Well, we didn’t know where another ER was, so we drove south again and straight to Primary Children’s Hospital. By the time we arrived, Jace was pretty sick. They quickly accessed Jace’s port again, and started fluids and an antiobiotic. They also gave him Tylenol, and drew blood to check for infection. His fever didn’t break for two more hours. By then it was 8 PM. At this point Jace felt much better, but the ER doctor called for a bed on the cancer floor for him. After counseling with the ER doc, the on-call Oncologist, and Dr. Hancock in Rexburg, they actually gave us a choice to stay in the hospital over-night to wait for blood results, or come home to be treated in Rexburg. We let Jace choose- and of course he opted for going home. This meant no tubes over night- no access to port (roughly translated as no needle sticking out of him for the next 24 hours), and his own bed.

He was a sick boy going back to the ER, but he bravely walked out of it at 9 PM singing and smiling. It reminded me of the lyrics to an old song, “I get knocked down, but I get up again, You’re never gonna keep me down…” At home when we pulled his clothes off him at 1 AM to put on some PJs, we found four band-aids (on port, on both legs, and on back), and the remnants of sticky tape everywhere on his body. He had been poked and prodded, put to sleep, and revived, been x-rayed and examined- and he bravely endured a grueling 20 hours.

I've never really loved roller coasters when I'm on my way down, but luckily the rise makes up for the fall. This morning Jace has a low-grade fever, and he will be returning to Teton Oncology at 3 PM to have his port accessed again for more antibiotics. He is sitting next to me helping me write this, and when I started typing those lyrics, my eyes filled with tears. He said, “Oh MY, mom. You’re ok! Don’t cry!” He reached to wipe away my tears, and I explained to him why I was so moved. I told him that he is amazing, and that I couldn’t believe how strong he was yesterday. Just like he'd been on a wild ride at Lagoon, he shrugged his shoulders and replied, “It was no big deal.”