Parting Gift

Woody Allen said "If you want to make God laugh, tell him about your plans.”  In hindsight our plan wasn't overly ambitious, however the expected relaxation never materialized ... in its stead was a long, miserable hospital stay.  Raina struggled with vomiting and other unpleasant side effects of the various chemo agents for most all the days since wrapping up round three.  We are just now seeing her start to rebound ... just in time to pack up and head out for a long stretch of focused radiation therapy.  We were powerfully bitter today about the lack of downtime and sleep, right up until today's MRI revealed that the tumor has shrank another 50% since Raina's last scan!  ... Razzle-dazzle!  Queue the party music!

The oncology team is quick to remind us that the real danger is that the cancer is likely to recur after we beat it down with chemo and radiation in the months ahead.  However, we have gotten used to the notion that we will be living in the space between MRIs for the rest of Raina's life and so are perfectly happy to declare this a major victory for the short-term.

Decompression

April wrapup... Raina is no longer a good candidate for surgery and so we have opted for radiation. In the weeks leading up to radiation treatment the oncology team wanted to get after the tumor with a third round of chemo. Fast forward a week or two and the third round is now complete... being more or less uneventful, we were discharged today. Another MRI to assess the progress is imminent.

We are working hard on getting Raina enough nutrition to maintain weight and then some. She could probably stand to put on a few pounds... a challenge with her being sick often, but the fact that we are home for awhile and dodging chemo for two months will give her a chance to get an appetite and recoup her strength.

Raina's condition permitting, we'd like to decompress this month after what seems like an eternity of high-stress decisions and inpatient care at the hospital. I for one anticipate drinking at least one beer and taking as many walks as my bony frame can tolerate during the month of May.

42

All Sci-Fi nerds know that the number 42 is the answer to the ultimate question of life, the universe and everything. Funny that it would also be the answer to the question that's been occupying our life, universe and everything for the better part of two months. The much anticipated visit from the oncology team came in the early afternoon following Raina's MRI.  They reported that the tumor was 42% smaller when compared to the pre-chemotherapy imagery. This is spectacular news.  I would consider it the first real victory in a string of battles on the path to a cure. Hopefully we've beaten up the tumor enough to make total surgical resection a possibility now.  A consult with neurosurgery is scheduled in the morning to assess the potential.

For the first time it seems like that light at the end of the tunnel might be something other than a speeding locomotive. We will revel in the new hope... and be grateful that the next phase of this fight will likely be on our terms, not the tumor's.

Walking the Walk

We caught a break two weeks ago when testing of Raina's spinal fluid revealed that the first round of chemotherapy cleared the tumor cells that were previously present. This would seem to bode well for the results of the elusive MRI that is now scheduled for Tuesday afternoon. However I'm sure anything is possible at this point. We entered the hospital for the first round of chemotherapy expecting a 10 day stay and didn't walk out until 6 weeks later.

Now back in the hospital after a few days at home, with that MRI looming and two rounds of chemotherapy behind us, we are starting to fray a little at the edges. The past four days have felt like four weeks as we try to prepare for and at the same time distract ourselves from what is waiting on the other side of Tuesday.

...

In the 14 months since Raina was born, she has grown from a squirming, cooing creature to a little person ... a gentle old soul that waves at strangers and gives out hugs and kisses with reckless abandon. Somewhere along the way she also became our best friend.

Courtney and I have previously agreed on what we are, and are not, willing to do to beat this tumor. I wonder now, when it comes down to it, whether we'll be able to make the important decisions in the face of the overwhelming emotion that is creeping up.

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.

Small Victory

Raina was in the hospital this morning to have a central venous catheter put in. This will make administering her chemotherapy easier, and will hopefully enable us to dodge any (many?) future IVs, which Raina hates with the intensity of a hundred burning suns. Everything appears to have gone according to plan. She is comfortable, though a bit groggy. We are planning a wagon ride and a long nap for this afternoon. I promised her when she got out of surgery that I would make her great grandma's apple pie.

The oncology team also did a spinal tap to test for any tumor cells that have migrated into the cerebrospinal fluid. We are banking on them not finding any, but it does not appear it will change the course of treatment in any event.

We reviewed the chemical cocktail this morning that Raina will be subject to next week. Lots of stuff. Lots of side-effects. Fortunately many of them pale in comparison to the side effects of unchecked tumor growth.

Treatment

Courtney and I spoke with the oncology team yesterday. We are expecting chemotherapy to start on Monday following a minor surgical procedure this Friday.

Our day to day existence has been much easier since we left the hospital two weeks ago, as Raina has been essentially symptom free. A happy baby makes for happy parents. Her big smiles and infectious laughter make it possible to temporarily forget the reality. However we're more than a little worried that the chemo will be hard on her. If so I anticipate it will make everything else harder to slog through. I suppose in the back of our minds is also the fear that she may never return to the bubbly baby we know. Successful treatment at this stage will only bring more treatment, whether it's radiation, surgery or more chemotherapy... All have their own side effects and potential complications.

The oncology team will assess the progress against the tumor after this first round of chemo. If we do not see much response (shrinkage) then it appears the recommendation will be to switch to palliative care. As such, the next three weeks will be a pivotal time. If you have favors to call in with whoever runs this crazy show, by all means.

Making Lemonade

"When life hands you lemons, make lemonade."

... I was driving home from the hospital last week when this saying popped into my head. I thought it would be nice to meet the person that first uttered it so I could punch them in the face. What a trite and naive observation. If only it were that easy.

Coming back to that train of thought, now with emotion removed from the equation, I wonder if there isn't something to learn from that phrase. What if we were to speak with or write to other families who are confronted with similar diagnoses? What if we were to soften up and become more compassionate people? What if this experience reminded us how miraculous it is that we live and breathe ... and made us take the time to revel in it? It does not seem possible that we will be able to channel the bitterness, anger and fear into something positive enough to balance the tragedy of Raina's illness. However it does seem possible and maybe even likely that Courtney and I will learn a better way to live. Regardless of the shape it might take I am inspired by the potential.