(continuation from 2 weeks ago)
So, we'd switched hospitals - to University of Chicago Medical Center (U of C) - and on May 28, 2009, Atia was scheduled to begin the second phase of treatment, "Consolidation". We were nervous because it was our first time EVER receiving treatment from U of C and not only was Atia going to get chemo, she was going to have an invasive procedure done that required anesthesia.
Atia was to have her picc line removed and a port put in her chest. I was frightened by the concept. During my cancer treatment, I had never had a port. I gave myself injections in my thighs, but my grandmother had one. The stories I'd heard about ports being accessed for chemo treatments sounded so painful and scary. I couldn't imagine Atia having to go through that, not to mention that it was yet another serious surgery in which she had to be sedated.
Despite the fact that we'd already been through this once, I hated every moment of watching my baby get prepped for surgery; holding her hand while she fell asleep was the toughest. Morbid thoughts crept into my mind. I tried to will them away, but I couldn't.
The procedure took longer than expected. They tried to insert the port through a small incision in her neck, but it didn't work. So they had to make a second incision in her chest. She received several doses of chemo during the procedure, including an injection into her spine.
The first time her port was accessed there were a lot of tears, from both me and Atia. She was crying because it hurt, I was crying because I hated that she had to go through it and that I was the one who had to hold her down and let them "hurt" her. Again, another miserable experience.
Thankfully, Atia withstood that phase of treatment fairly well and had little-to-no complications, but she was left with two scars; one on her neck and one on her chest. Her baby soft porcelain skin had been forever marked - bearing the physical reminders of all she had and would endure.
I often think about the future and sometimes silly, somewhat irrelevant thoughts invade my mind. One of the recurring ones is - I hope Atia's able to wear strapless dresses someday without having to worry about covering up the scars. Goofy, right? I mean, in the big scheme of things, does it really matter? But, as the mother of a girl, I think about those things.
We expected to begin the third treatment phase, "Interim Maintenance", on June 26th, but Atia developed mouth ulcers (sores) that made it difficult to eat or drink. Her blood counts also plummeted and were too low to continue. Treatment was temporarily halted.
The entire time I worried that something more sinister was causing the delay, but the doctors assured me that delays are "typical"; almost all children undergoing treatment experience them at some point. That reassurance helped calm my nerves a bit, but I still felt an anxious tingle in the pit of my stomach. I prayed for her speedy recovery so that we could get back on track with treatment. I was scared that every day off of chemo created a small window of opportunity for rogue cancer cells to grow.
Eleven days later, Atia was well enough to start back up again. That was our first significant delay. "Interim Maintenance" finally began on July 7, 2009.
Two days after that, Atia started experiencing excruciating pain every time we picked her up, changed her diaper or asked her to stand. Her reaction to pressure put on her abdomen caused us great concern. We immediately notified the doctor and blood was drawn to test her liver functions and enzymes; they were slightly elevated and an ultrasound was ordered. It showed that Atia's liver was inflamed and enlarged.
Panicked, we looked for an explanation. Unfortunately, the doctor wasn't able to pinpoint the exact cause. We were told that it was NOT a "typical side effect" of the chemo Atia was receiving. Immediately, my thoughts drifted south; I started thinking that something else, much worse must have caused this; something bad that we just couldn't see yet. We were told to monitor the situation and advise the doctor of any changes. Luckily over time, her liver healed itself.
However, the "Interim Maintenance" phase continued to be challenging. We'd been told that this phase was "easier" than some of the others, but apparently Atia's body hadn't gotten the memo. She suffered from a whole series of serious side effects: vomiting, nausea, severe constipation and loss of appetite. At one point, Atia had to be taken to the emergency room because of a high fever. Thankfully, her blood counts were high enough that she wasn't admitted.
Again, we were advised to monitor the fever and call with any changes. It too healed itself. We were happy to wash our hands of that phase when it was over on August 17, 2009. But, we were incredibly nervous for the next. It was supposed to be a doozie.
"Delayed Intensification" began on September 4, 2009. We'd been warned that it would be the hardest of all the phases. The main reason was that she would receive higher doses of chemo than ever before in an effort to wipe out her immune system (similar to the goal of the 1st phase of treatment).
She was going to be sick, really sick...