The Gift

Raina has been vomiting on a more or less daily basis since completing her chemotherapy. It's been hard to watch, particularly as she's been on meds which should prevent her from getting nauseated. With the number of other things that are going on (i.e. brain tumor, viral pneumonia, weakened immune system, being gassed up on antibiotics and weird supplements) we were on the verge of giving up trying to figure out a root cause until the next round of chemo was over. Raina, presumably irritated with our lack of conviction and/or intellect solved the equation with a rather violent vomiting fit that brought up her nasojejunal tube (aka her feeding tube)... after which point she was virtually a new baby. In the 24 hours since, she smiled, sat up to play, started verbalizing again, ate a random sampling of baby treats and has not gagged or vomited once. In lieu of making semi-educated guesses about why the lack of NJ tube has improved things, I'll take this opportunity to report that we are enjoying every minute.

Relativity

Thursday around noon the oxygen concentration in Raina's blood dropped to an apparently unacceptable level after a coughing fit, necessitating some emergency intervention in the form of a metric shit-ton of doctors, nurses and technicians, a high stress trip to the ICU and plenty of ulcer-inducing worry. Just three days ago we were cursing our 23-day stay on the Oncology floor and fretting over all the procedures cancelled due to Raina being feverish. 24 hours later we were lobbying doctors not to intubate our daughter and set her up on a ventilator. So we have reconsidered our position on an extended stay with the Oncology folks. Specifically, we will be grateful to spend another three weeks there if we can escape the ICU unscathed.

I will refrain from making further remarks about the Universe and its plot to systematically dismantle our reality, mostly because it appears to be unproductive. Instead I will take this as a personal lesson in the relative nature of our situation (albeit a gratuitous one).

Deferring Luck

Yesterday marks two weeks since Raina was admitted to begin her first round of chemotherapy. Night fevers, a bout with a respiratory virus and a loss of appetite have extended the expected 8-10 day stay. We're hoping to be able to take her home this weekend before returning for a second cycle next week. It has been a difficult stretch so far and she could use some time in a more comfortable environment we think.

Prior to the start of chemo the oncology team sat us down to discuss the results of Raina's lumbar puncture procedure, which revealed that tumor cells had spread to her cerebrospinal fluid. Having just come to terms with the final pathology and mentally prepared to see her struggle through chemo, this was an unexpected and unfortunate twist. As we previously understood, the initial treatment won't vary with this finding. However it does complicate the treatment in the long term and puts Raina in the worst category statistically. We are still waiting for our luck to turn, as by our count we've had five horrific developments in a row since this ordeal got underway. It's hard not to take this as proof that the universe is conspiring to destroy us. Though occasionally we get a glimpse of how beautiful life can be when Raina smiles unexpectedly after a rough day or the morning sun shines through the windows into our makeshift home here at the hospital. So we'll resist the urge to be bitter and despondent for the time being.

It turns out the MRI will not reveal the chemotherapy's total effect for a few weeks, hence a second cycle in the interim to try and make further progress. We will wait and take any luck we have coming at that next MRI, please.