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.

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.

Grace

Courtney and I have been introduced to a new word.  That word is palliate.  It is a verb that means to relieve without curing.  The phrase "palliative care" comes up often.  This type of care forgoes attempts at curing a condition in an effort to maximize the quality of life.  What an awful proposition this is.  I hated this phrase and the awful implications the minute I ran across it.  

When Raina was diagnosed, we experienced about 48 hours of despair and a vague but huge sense of loss.  After this initial period something changed...  It happened in Courtney first.  The sorrow and fear transformed in part to a need to take action.  It manifested as intense research, questioning and documenting.  Seeing her galvanize amidst the chaos in the hospital gave me strength.  Like an invisible referee had brought us into the ring with Raina's tumor, made us shake hands and yelled 'fight!'.  Since that moment I really have viewed this as a fight.  I think that's a common reaction when an illness is diagnosed.  

It appears highly likely that we can achieve some small victories against Raina's tumor. It is also likely that we will destroy the person that we love in the process.  The stakes in this game are bewildering.   

As I reflect and ponder the potential outcomes, I have gained a respect for the notion of palliative care.  I hate the phrase as much as I did two weeks ago.  But I am learning that there is something to be said for dying with dignity and grace.  So often we are not afforded the choice.  

Pathology

Courtney and I visited the hospital today to meet with the oncology team. They relayed that Raina has an atypical teratoid/rhabdoid tumor (ATRT). This is probably the worst news we could have received... ATRTs are highly aggressive and prone to metastasis. They appear to be at the extreme end of the malignant tumor spectrum. Long term survival does not seem likely. A second and possibly third opinion will be solicited, however we do not expect that the diagnosis will vary significantly.

The shreds of hope we had been clinging too are all but gone. The grim reality is starting to settle in and it is carving out a void that I suspect will never be filled. I do not know how parents cope with the loss of a child. It seems impossible to me.

Courtney and I have resolved again to enjoy all of the time we have with Raina. To really succeed at this it seems likely that we must postpone much of our grieving... Grieving for the life we had planned, for the reality we knew just two weeks ago and for the daughter that may not have the chance to grow up. I think otherwise we will be unable to enjoy the time we spend with her. Hopefully this is not too ambitious a goal.

Coping

The meeting today with Raina's oncologists was postponed a day due to some inconsistent results from one of the labs analyzing the biopsied tumor cells. Another day of waiting before we get the pathology.

The progression from initial diagnosis to surgery to discussion about the nature of treatment has been hard. So far the most effective strategy has been to focus on the very short term. The next appointment, the next day, the next phone call. I think human nature though is to speculate and project and plan for what's next, and so there are stretches where we get wrapped up in the myriad tragic scenarios that may be waiting on the other side of tomorrow. None of this type of thinking has been very productive and it's almost always accompanied by intense sadness. Visiting family and friends have helped reel us back in from these dark places regularly. It is said that no man is an island, and I cannot agree more after having lived through the last two weeks. We are fortunate to have so many people here to help us through. Thank you.

Infit

I really like Latin. The language I mean. Its age and relative obscurity to modern folk grant it a healthy respect I think. There is an elegance to it too that I am not educated enough to properly describe.

I understand "ex dolor" to translate as "from pain", which appropriately describes my motivation in writing here. Per above this is maybe a more respectable and elegant title than the English alternative.

My daughter Raina was diagnosed with a brain tumor the day after her first birthday. She spent the next eight days in the hospital being poked, prodded, irradiated, sedated, cut open and ultimately stitched back up only for us to learn that the tumor was malignant, aggressive and pushing up against her brain stem.

The devastation that this diagnosis has wrought on our little family unit is hard to describe. I sit here, despairing, on the eve of a meeting where the final pathology report will be presented to us... fearful of any and all eventualities that may unfold.

I have hope that this blog can serve as a kind of therapy for my wife and I during these uncertain times... And maybe even as a means of communicating with family and friends when we find it hard to speak the words.