The first round of chemotherapy lasted 28 days. During this phase, Jaxsen was required to take liquid steroids and anti-nausea medicine twice a day. Jaxsen absolutely HATED the steroids and often screamed while taking them because they were "yucky". Nick and I disliked them too, but for a different reason. The steroids made Jaxsen lethargic and moody. He quickly became uninterested in the things that he used to be obsessed with, like coloring, doing puzzles, and playing with his cars and trains. All he wanted to do was sit on the couch and watch either "The Polar Express" or "Toy Story 3". The steroids also made him extremely hungry. It wasn't unusual for Jaxsen to eat cereal, noodles, crackers, string cheese, pepperonis, and noodles... for breakfast. His favorite foods to eat during this phase were pizza, mashed potatoes, chicken tenders, and noodles. The steroids made him so hungry that he woke up 2 or 3 times a night asking for food. We had many restless nights which turned into long, stressful days.
Another part of Jaxsen's treatment included seeing his oncologist once a week. His first outpatient visit was scheduled on Friday, January 17, which was just a few days after we were discharged. Jaxsen was scheduled to get a lumbar puncture (LP) with Dr. Unguru. We were informed that only one parent would be able to walk with Jax back to the operating room because this procedure had to be done in the general operating room instead of the Children's Diagnostic Center like usual. We decided that I would walk Jax back to his room, so the doctor gave me a disposable full-body scrub set to wear, complete with a hair net and booties. Jaxsen got to wear a silly looking hair net too. Jax and I said good-bye to Nick and then sat on his hospital bed so we could get rolled back into his operating room. We were rolled into a very large room with lots of strange looking machines and contraptions. Jax was sitting on my lap when the anesthesiologist entered the room. He gave Jax the anesthesia via the port in his chest, and Jax quickly fell asleep. I gently laid Jax down on the operating table next to the bed and leaned down to give him a kiss. When I leaned down, I was shocked to see that Jax still had his eyes wide open. I whispered to Jax that it was time to close his eyes and go to sleep, but he didn't flinch. I tried using my fingers to close his eyelids, but that didn't work either. I tried desperately for a few more moments to get Jax to close his eyes, but nothing worked. Eventually, one of the assistants gently took me by the arm and told me it was time to leave. I looked Jaxsen in the eyes one last time and told him that mommy and daddy were going to be there with him when he woke up. The doctors ensured me they would take care of him, and they gave me a kind smile as I turned to leave. I tried to hold my tears back for as long as I could, but as soon as I saw Nick in the waiting room, I broke down. I told him I never wanted to see Jax like that again.
The procedure itself only took about 20 minutes, but it took Jax about an hour to wake up because the lumbar puncture overlapped with his naptime. Jax was very groggy when he was in the process of waking up, but as soon as he heard Nick and I mention mashed potatoes, he perked right up! The nurse needed to monitor Jax for about 15 minutes after he woke up to make sure that he was acting normally after receiving the anesthesia. As soon as she gave us the OK, we were able to go home and relax.
The next week, Friday, January 24th, Jax needed another dose of chemotherapy. Thankfully, he only needed a type of chemo called Vincristine, which was given to him via his port, rather than through a lumbar puncture. Jax didn't like us taking his shirt off, because he doesn't like looking at the bruises and scars on his chest, but as soon as the nurses accessed the port, he couldn't peel his eyes away. He loved asking them questions about what they were doing and what each medicine/saline did. He even helped push the medicine from the syringe into his port. The nurses loved how curious he was, and so did mommy and daddy! Before we left, one of the nurses told me and Nick that we were her favorite parents because we got along so well and we obviously loved Jax a lot. That definitely made us feel good after spending a long, stressful morning in the clinic.
The following Friday, February 7th, marked the end of his first round of chemotherapy. By this time, Jaxsen had gained 7 pounds as a result of the steroids, and he was extremely indecisive and moody. For this appointment, Jax needed a lumbar puncture and bone marrow aspiration, just like he did for the first day of Round One. As always, Jax needed the lumbar puncture so they could insert the chemo directly into his spine. This was to ensure that Leukemia cells would not enter the spinal cord. He needed a bone marrow aspiration because the doctors wanted to compare the amount of Leukemia cells that were present in his system on the first day of Round One to the amount that were present in the final day of Round One. This was essential in order to determine whether or not Jaxsen was responding well to the treatment. We were sent to the Children's Diagnostic Center to have these procedures done. Jax was put to sleep by Dr. Zuckerburg while he was sitting in my lap. Like always, I cried at the sight of seeing him receive the anesthesia. Dr. Fixler was the oncologist in charge of these procedures, and he gave Nick and I the opportunity to stay in the room to watch the procedure, if we chose to. We decided to stay in the room with Jax, mainly because we wanted to be there with him in case anything happened. Dr. Fixler positioned Jax away from us though, so we couldn't see the lumbar puncture or bone marrow aspiration get done. The two procedures only lasted about 20 minutes, but Jax slept for a lot longer than that because it coincided with his naptime again. As soon as he woke up, he immediately asked for pizza. Dr. Fixler told us that he would call us in a few days to tell us the results of the bone marrow aspiration. We were then given the OK to leave, so we packed up our belongings and headed home to pig out.
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