The fourth phase of treatment was called, Delayed Intensification and it proved to be the most difficult of all. Atia had numerous spinal taps and her chemo regimen and dosages were ramped up - big time!
We tried to prepare ourselves, but had no idea what we were in for. It was as bad as everyone had warned us. It savagely ripped through Atia's insides causing her immense pain. She suffered headaches, tummy aches, back pain, "poopy cramps", tingling toes and fingers and joint pain in her legs. The days were horrible and the nights were worse.
Have you ever been in pain for a long stretch of time? Imagine watching your child going through that. It was a nightmare.
Since Atia had no immune system, she was highly susceptible to all germs. We couldn't risk infection so we decided to isolate ourselves. Atia and I never left the house. Steve went only to work and back. If he HAD to go to the grocery store, then he would sanitize while shopping, sanitize while driving home and scrub himself clean upon entering the house.
Our motto was: no germs in, no germs out!
Atia didn't seem to notice that we were hermits. She had no energy and slept a lot. When she was awake she was pretty mellow, except for the tantrums.
The steroid chemo caused her to go from tired and lifeless to a raging maniac within moments. The mood changes were so shockingly fast that I often didn't have time to get myself mentally prepared. Most of the time, she was halfway through the "attack" before I could even react.
Atia turned two on September 20, 2009. Unfortunately, she was too sick to celebrate. We spent the day tending to her pains and overall discomfort.
No birthday cake, no party, no friends.
Thankfully, Atia didn't understand it was her birthday, so she didn't feel cheated.
However, Steve and I were devastated. This was certainly NOT the way we'd ever envisioned celebrating the day of Atia's birth. It was vastly different from the bash we'd thrown for her 1st birthday.
Despite their absence, in our minds, we blew out Atia's birthday cake candles over and over and over again wishing that we'd have the chance to make it up to her next year, wishing that this horrible treatment phase and ALL of Atia's suffering would prove to be worth it, but most of all...
wishing desperately for our child's survival.
The pain passes, but the beauty remains. ~Pierre-Auguste Renoir