Thank You

To all of Raina's amazing family and friends... your support continues to humble us. Thank you.

Raina

Raina passed away last Friday unexpectedly. The intensity of the treatment too much for a small body to manage. We will miss her terribly. She was buried today at Congressional Cemetery in the District of Columbia... sent off with a ceremony attended by her closest family.

There is a great quote in a book that my sister-in-law bought us about grief. Paraphrased it is "The only way out of grief is through" ... implication being that healing can only be purchased through the experience of pain for a loss. I suppose I wouldn't have it any other way. Raina was truly the great joy of our lives. For us to be anything less than totally despondent now would imply she was something less than everything to us.

Gone

http://raina-v.blogspot.com/2011/10/raina-v-mooberry.html

...

"You have seen our whole voyage.  You have seen us go to sea, a cloud of sail, and the flag at the peak.  And you see us now, chartless, adrift - derelicts, battered, water-logged, our sails a ruck of rags, our pride gone.  For it is gone.  And there is nothing in its place.  The vanity of life was all we had, and there is no more vanity left in us.  We are even ashamed of that we had, ashamed that we trusted the promises of life and builded high - to come to this!" - Samuel Clemens

Curve Ball

Finishing up treatment hasn't resulted in the break we thought it might. Raina had a rough go of the final three rounds of chemotherapy, but hung in there like a champ. However, she has been experiencing some significant, debilitating symptoms that are being attributed to the radiation therapy. It is unclear how long these symptoms will persist or if they are reversible. We came into the hospital last week to help us manage her general discomfort and it has turned out to be one of our most troubling stays. Difficulty breathing yesterday bought us an express ticket to the ICU, where we will remain for an undetermined number of days.

I don't think anyone was prepared for this development, and so it has been an injustice that is twice as hard to swallow. The familiar feelings of fear, anger and despair have crept back up and are looming large. Raina is clearly having trouble tolerating the environment and we are no fans either. Looking back over previous posts and thinking through earlier stints here, I was relieved to realize we already know the formula for getting through this ordeal... Family and friends. So, however you are receiving the word (telegraph and carrier pigeon being the most likely), please... don't hesitate to reach out. We need you now as much as ever. If you are close enough to visit, Raina would love you to read her a story, give her a back rub or just smell her feet (an old fave). Courtney and I would certainly appreciate 30 minutes off the bedside watch as well to indulge in cafeteria mac 'n cheese or a nap.

Stable

Radiation at the Children's Hospital of Philadelphia wrapped up on Tuesday and we made what is hopefully our last trip North for treatment. We've spent the intervening five days enjoying the weather and comfort of home. Raina put on a few pounds in Philly, possibly due to the cheesesteaks, which makes the chemo starting at the end of the month feel a little more manageable. All in all, we are emotionally at the highest point we've been since diagnosis.

MRIs taken during radiation indicate a tiny amount of tumor shrinkage, most likely attributable to residual effect from the last round of chemo. We do not expect to start seeing results until about six weeks after the end of radiation and may see benefits out as far as nine months. Between this and the three rounds of chemo planned next, we need to see the remaining disease essentially disappear. It is unclear how likely this is, though we are doing our best to remain optimistic as we begin the next stage in this battle.

Round four of chemotherapy will begin at the end of July. The docs estimate she will wrap up the sixth and final round by the end of October. While it seems unwise to wish away time given the circumstances, we will be grateful when Raina no longer has to endure these treatments.

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.