Posts in the Rebecca Category

This is the stage of recovery where things are both going great and deeply difficult.  (Because alliteration.)  And the two are inextricably intertwined, so that even the difficulty becomes a sign of the progress.

Although we don’t have exact start and end dates yet, since that depends on when they can get Rebecca’s brain mapped in excruciating detail, we have a treatment plan that feels pretty solid.  That in itself is a relief, as was learning that CHOP is in-network for my health insurance plan.  That’s huge, considering what kind of treatments and care were required to save Rebecca’s life.  Had all this been out of network, well, let’s just say that at a minimum I would have had to restart my retirement planning from scratch.

Rebecca has improved greatly over the past two days, and as of today was taking unassisted steps, holding a hand for balance, walking slowly from bed to hallway and back.  Her fine motor skills have pretty much come back up to par: her handwriting looks not a bit different than it did two weeks ago.  What she needs now is strength, a bit more gross motor skill recovery, and to re-establish her balance.  And that last might be a function of strength.  It’s easy to lose your balance when your legs are trembling from the effort of holding up your weight.

As her strength returns, though, she has enough spare energy to start processing what’s happened to her and how her life has changed from what she remembers.  All sorts of fears and resentments bubble up, as they should, and can trigger epic temper tantrums that require a great deal of patience to weather, diagnose, and treat.  We’re trying as hard as we can not to medicate her into quiescence, because that’s not her and it’s not our way.  We want her fired up and ready to fight, her old fierce self.  At the same time, we don’t want her to unnecessarily suffer real, physical pain.

It’s a tough line to walk as a parent, because we are determined not to baby her, but at the same time we have to constantly make snap judgements as to whether or not she’s really at her temporary limits, or if she’s using her situation as an excuse to be a defiant five-year-old.  Then we second-guess our snap judgements.  Sometimes we make the wrong calls, and learning to accept that is part of our adjustment process.  We keep moving forward just as she does, slowly relearning how to do what had become second nature, stumbling, regaining our feet, and taking another step, and another, and another.

In between the storms and second-guessing, Rebecca is her old impish self, constantly smiling like she has the world’s greatest secret on her lips, laughing quietly at the funny movies she watches, making silly faces at the nurses, and generally charming the hell out of anyone she meets.  She is herself, something we had feared (with good reason) might not be the case.  That alone is reason to celebrate.

• One Step At A Time was published on Saturday, August 24th, 2013.
• It was assigned to the Cancer, Parenting, Personal, and Rebecca categories.
• There have been thirteen replies.

A lot of people have asked how they can help us, and the truth is that right now, I really don’t know.  Even more importantly, I don’t need to know.  Throwing me a thousand things to think about is not going to help.  We love and cherish and appreciate all the expressions of support and caring more than most of you can imagine.  We are helped by knowing that you want to help.  If we knew of a specific way you could help, I’d say so, and will.  We’re just dealing with a lot right now.

We have a meeting today with a hospital social worker who will give us information on things like the Ronald McDonald House and other nearby short-term housing solutions, and whatever other things they know we need to think about that haven’t occurred to us yet.  We’ll deal with those things as they come.  We have to deal with everything as it comes.

Some people have asked if there’s a way they can donate money.  Please, not yet.  I literally do not know how much all this will cost, not even within a rough order of magnitude.  Maybe it will be a few tens of thousands of dollars that we can easily pay on a plan — hospitals are quite used to that sort of thing.  Maybe it will be hundreds of thousands of dollars, or well over a million.  I have not the first idea, and as of this moment I really don’t care.  Believe me when I say that if we need financial assistance, I will ask for it.

I realize that I’m effectively asking everyone to stay in a holding pattern, and that’s kind of sucky when the instinct is to jump into the breach and help, but that’s what we need at this moment in time.  Be ready and willing to help when help is needed, and hold us in your thoughts.

• Holding Pattern was published on Thursday, August 22nd, 2013.
• It was assigned to the Cancer, Personal, and Rebecca categories.
• There have been twelve replies.

Rebecca has grade 3 (anaplastic) astrocytoma.  With six weeks of proton radiation bombardment of her brain and a year of mild chemotherapy, she still has a 50% chance of dying at some point in the next five years.  Because if, after all that treatment, another tumor emerges, there are no more treatments that will help.  We will only be able to watch her die.

On the other hand, if she survives those five years, her chances of growing to adulthood are excellent.  In the meantime, her quality of life will not be terrible, however long it lasts.

There are very few proton treatment facilities in this country (or any other), but one of them is the Children’s Hospital of Philadelphia.  We have already decided that is where she will receive her treatment, which will begin after two weeks of intensive planning.  I don’t yet know where in Philadelphia we will live for the next two months; not in the hospital, as the radiation therapy is outpatient, and we will be discharged once she regains her physical strength.  I know we will find a place, one way or the other.  For now, she is still in the hospital, and we are trying to face each day as it comes.

Kat and I are still deep in shock.  Carolyn is struggling mightily to cope with everything that’s happening to her sister, her family, and her life.  Rebecca is still physically extremely weak and doesn’t want to know what the doctors said.

Me either.

I don’t have much else to say right now.

• The Diagnosis was published on Wednesday, August 21st, 2013.
• It was assigned to the Cancer, Parenting, Personal, and Rebecca categories.
• There have been thirty-eight replies.

The days leading up to the discovery of Rebecca’s tumor were, in a lot of ways, just as filled with uncertainty as the days after.

On the day before we left for vacation, Rebecca had her hair tightly braided by a professional.  We went with tight braids because we were headed to the beach, and we wanted a hairstyle that offered some hope of washing some of the sand off her head.  That evening, she complained that she had a headache, so we gave her some ibuprofen and sent her to bed.

Was the tumor already making itself felt, or was it just that her braids hurt her scalp?

The next day, we drove through the Appalachian Mountains on our way to the southern tip of New Jersey.  Halfway through the mountains, Rebecca complained that her back hurt, and shortly thereafter threw up pretty thoroughly.  We pulled over, washed her and her things down as much as possible, told her to watch out the window for a while, and continued on.  After that, she seemed fine, eating normally and fighting with her sister over who got the top bunk in our vacation rental’s second bedroom.

Was the tumor already making itself known, or did she just get car sick?

That night and the next morning, she played on the beach, jumping waves and making sand castles.  After lunch, she lay down for a beach nap, and it went much longer than usual — more than three hours.  We braced ourselves for a rough bedtime, but instead she threw up a couple of times that evening and complained of a headache and sore throat.  Kat took her to an urgent care center, where a rapid test for strep throat came up positive.

Was the tumor already affecting her, or did she just have strep throat?

Given her symptoms and the test result, the urgent care staff prescribed antibiotics and sent her on.  Rebecca came back to the apartment and fell asleep almost immediately.  The next morning, she still felt sick, so she lay in bed and ran to the bathroom a few times to throw up, usually just after she took her antibiotics.  By that evening, she was sufficiently dehydrated that Kat took her to the emergency room to be evaluated and rehydrated.  So Rebecca was evaluated and rehydrated, given some anti-nausea medication, and sent home.

Was the tumor already sickening her, or was she just having a reaction to the antibiotic and/or the anti-nausea medication?

The next day Rebecca was increasingly lethargic and continuing to throw up.  We were feeding her 5mL of Pedialyte by dropper every five minutes in an attempt to keep her hydrated and nourished until she got over whatever was sickening her — we’d started to wonder if she’d caught a virus to go along with her strep throat, as there are several with those symptoms making the rounds — and could start eating food again.  This continued through the day and all through the night.  Every few hours, just as we started thinking that she’d turned a corner, she’d throw up whatever we’d gotten into her.  Past midnight, she started complaining of a headache just before throwing up.  I asked her about common migraine symptoms, none of which she had.  Occasionally, as she lay limp in my lap, her limbs would twitch once, the way they sometimes do when you’re falling asleep.

Was the tumor already disrupting her brain, or was she just exhausted from the vomiting and lack of consistent sleep?

By morning, we decided to switch her to a different antibiotic.  We were guessing, grasping at straws, feeling more uneasily concerned, but not knowing what else made sense to try.  I went to pick the new prescription up from the pharmacy.  While I was gone Rebecca threw up more than her stomach should have contained, and did so repeatedly.  Before each bout of vomiting, she would grab her head and writhe on the floor in pain.  Before I had returned, Kat knew that Rebecca had to go back to the emergency room.

So we went, and Rebecca sat listlessly in a chair with a bucket in her lap.  Eventually we were taken back, and Rebecca was hooked up to intravenous saline and anti-nausea medication.  It seemed to help, but she wasn’t getting any more energetic.  We sat there with her all afternoon, getting sympathetic looks from other patients and their families.  “Such a little angel, it’s a shame to see her here.  I hope she’ll feel better soon,” one said.  Around 5:20pm, I left to reclaim our other children from the day sitter we’d hired.

Just before 6:00pm, Rebecca had a seizure.  She came out of it and was rushed to the CT scanner.  After her scan, I talked to her on the phone, and she sounded really good.  Like her old self, perky and mischievous, better than she had in days.  We said “love you” to each other and hung up.

Five minutes after that, Rebecca went into another, more severe seizure, and didn’t stop.  The ER staff broke into the crash cart, administered paralytic drugs, and intubated her to keep her alive.  I found out as it happened when I took a call from Kat and the first thing I heard was her sobbing voice calling out, “I love you, baby, Mommy loves you…”

I might have died in that moment from the freezing terror that spiked through my chest.

The CT scan showed a mass.  The regional medical center requested a life flight to The Children’s Hospital of Philadelphia.

The total elapsed time from the beginning of that long beach nap to her first seizure was 77 hours.

How little we know, even when we think we know.  Rebecca had a sore scalp from her braiding.  Rebecca was car sick.  Rebecca had strep throat.  Rebecca wasn’t tolerating the medication.  Rebecca had a virus in addition to strep throat.  Every one of these hypotheses fit the available data.  Every one of them was reasonable and backed by the assessments of medical professionals, one of whom was her mother.

Yet somewhere in that progression, what we were really seeing was the emerging effects of a brain tumor, the last thing we would ever have suspected.  Where was that line crossed?  Which of the complaints were what they appeared to be, and which were the zebra-striped thestral of a tumor disguised as an ordinary pony?

We’ll never know, any more than we really knew what we were seeing as it happened.  I have my suspicion, as the title of this post suggests, but I’m going on instinct and hindsight-double-guessing.  I could be wrong.  Maybe it was when she complained about her braids.  Maybe it was months ago, when her usual fiery stubbornness intensified, something we put down to developmental appropriateness.  Maybe it was halfway through the vomiting period, with that effort spiking her intracranial pressure in a such a way that it shifted the tumor into a blocking position, causing the pressure to continue to build and build until she started seizing.

We don’t know.  We never know.

• 77 Hours was published on Monday, August 19th, 2013.
• It was assigned to the Cancer, Parenting, Personal, and Rebecca categories.
• There have been twenty-seven replies.

As we were warned by many and are beginning to learn the very hard way, this is a journey of many setbacks.

The tumor that had grown in Rebecca’s head, forcing itself between all the most critical areas of the brain, was entirely or almost entirely removed.  It’s mostly likely the latter, since entirely removing the tumor would have meant cutting into brain matter that simply cannot be sacrificed.  So it’s very likely that microscopic bits of it still remain.

There was an initial pathology analysis done, but I’m not going to share the results because we’ve been told that the full workup could tell a very different story.  Apparently, some tumors can look like other tumors at first glance, as it were, and the tumor type and grade that they initially identified is really rather frightening.  Regardless, we don’t know for sure what we’re up against, and won’t for a few more days.  We don’t know how much ongoing treatment she will require.  It could be a lot, a long road of courses of chemotherapy and radiation bombardment that will sear cells and sicken her in an attempt to kill the tumor before it kills her.  Or she might need no further treatment at all.  Not really counting on that last one, though.

The problem is that even with the tumor removed and an alternate drainage path already created, Rebecca’s intracranial pressure is not staying down.  Even worse, the drainage line that extends from the back of her skull cannot be set at too high a pressure level, or else cerebral fluid starts to leak around it onto the sheets.  Worst of all, at least from my perspective, her energy and behavior levels aren’t correlating to the pressure levels in the expected way, which is a real mystery.

So tomorrow morning is another MRI, and the day after that will almost certainly mean another round of surgery — either to reopen the drainage channels in place, or to install an artificial channel that will drain fluids from her brain and dump them in another spot in her body.

Apparently that’s a thing.

Thus she faces her third major surgery in four days, and at this point we can’t even feel like we know that that’s the end of them.  For all we know, she might need a fourth surgery, and then a fifth, and on and on.  Not only are we uncertain about the true nature what grew in the center of her brain, we’re uncertain about when she can finally start healing.  Our daughter’s life is in obvious peril, all while we lack even the most basic information about when and how we can help her fight to keep it.  It is a special form of parental hell, one that cannot be fully understood even by those who live it.

And yet, today she was able to whisper a few words at a time to us through the fog of her exhaustion, telling us what she wanted to drink and responding to questions.  She was able to hold and eat a popsicle without any assistance.  She smiled as best she could at Kat’s silly faces and in response to visits from grandparents and friends.  She played blinking and hand-squeezing games with me for a while.  Later, she was able to kick off her covers and endanger her arterial line.  She was, for all her lethargy, recognizably herself.

Three steps forward, two steps back.  It is progress, but progress of a cruelly exhausting kind.

• Three Steps Forward, Two Steps Back was published on Sunday, August 18th, 2013.
• It was assigned to the Cancer, Parenting, Personal, and Rebecca categories.
• There have been thirty-nine replies.

Our five-year-old daughter, Rebecca, is currently between major surgeries at The Children’s Hospital of Philadelphia.  We were on vacation in south New Jersey when what seemed to be a serious bout of strep throat turned out to be a large brain tumor.  She was airlifted from the regional medical center in Cape May to CHOP and is resident in the PICU, as are we.  This afternoon, the surgeons were able to relieve her elevated intracranial pressure by creating an alternate drainage path for the fluids that the tumor had obstructed.  Tomorrow, she will undergo a craniotomy to resect as much of the tumor as possible as well as biopsy it to see exactly what we’re up against.

I do not know, as I write this, where we will be in 24 hours.  The possible outcomes quite literally range from death to complete long-term recovery with no serious side effects.  Everything depends on what they find in her head tomorrow, and how much of it they can remove, and how the removal process goes.  Until we know that, we know only that she is still herself and that she has incredible care here at CHOP.

We are well covered for help.  We have friends and family here to help us and our other children.  But we — me, my wife Kat, Rebecca’s siblings Carolyn and Joshua, and our extended family of relatives and honorary relatives — could really use your support.  Warm thoughts, positive vibes, heartfelt prayers, just keeping us in mind…whatever works for you will work for us.

She is so small, and so strong, and we are so scared.  Any thought you can spare us is more than appreciated.

Update 17 Aug 13: Rebecca’s surgery went very well, almost optimally well.  I’ll post about it soon, when I know more details.  Thank you all so much.

• Lend Us Your Strength was published on Friday, August 16th, 2013.
• It was assigned to the Cancer, Parenting, Personal, and Rebecca categories.
• There have been two hundred sixty-one replies.

Human beings say, “It never rains but it pours.”  This is not very apt, for it frequently does rain without pouring.  The rabbits’ proverb is better expressed.  They say, “One cloud feels lonely”…

—Richard Adams, Watership Down

The past few weeks have been a bit more intense than usual.  It all started on Inauguration Day, in fact, though that’s pretty much just coincidence.

It all started with a cold.  Carolyn stayed home with a terrible cough and a slight fever, which meant she got to watch the inauguration with us.  A couple of days later, she was fine, and Rebecca was sick.  Nothing unusual about that, of course: you have two kids, they pass germs along to each other.

In Rebecca’s case, though, it didn’t seem to get better.  By the time, a few days later, she spent most of an afternoon sitting very still on my lap, whimpering softly, her skin burning with fever, Kat started to suspect a common but serious childhood illness.  A trip to the doctor confirmed it.  The child in the next examination room had the same illness and was unlucky: two inhaler treatments had little effect, and he was sent to the hospital.  Rebecca fared much better: one treatment and she was much improved.

That was lucky for us all, because we had a long road trip ahead of us.  The night before Rebecca’s doctor appointment, Kat’s mother died after a very long and difficult illness.  We had known it was coming, thanks to the hospice nurses.  We had known for a very long time that this is how it would one day end.  Most of the mourning had been done ahead of time, to be honest, but at the same time it’s never easy to lose a loved one, no matter how much you may have prepared.

We needed to be on Long Island by Sunday night.  Plane fare was far too expensive, even with the bereavement discount.  So we packed up the nebulizer, treatments, and everything else we needed to drive eleven hours to our hotel.  Pennsylvania, as anyone who’s made the drive will tell you, goes on forever.  It’s an even longer forever when you have to make extra stops, as will happen with four people, two of them children.

A very good friend of ours watched the girls as we attended the graveside ceremony, and we spent the next couple of days with Kat’s family as they sat shiva.  And then we drove back to sit our own.

I had to be in Boston the following week for client work, and while a great many awesome things happened on that trip, it was hard to leave so soon after everything else.  In the middle of everything else, really.  I left on the second day of our two-day shiva; the rabbi finished his prayers and remarks and five minutes later I was pulling out of our driveway to catch my flight.  And of course the illnesses, traveling, and general upheaval in our lives had pretty well shattered both girls’ sleeping patterns, and I couldn’t be there to help.

The day after I got back, Kat finally went to the doctor to see about her sore thumb.  It turned out to be broken.  She’s wearing a brace now.  Two days after that, I quite unexpectedly suffered an anaphylactic reaction to a food I’d had many times before.  It was the whole works, too: sore stomach, tightness in the chest and throat, dizziness, itchy hands, and, so my wife tells me, a blue tinge around the lips.  It was a new and wholly unwelcome experience, I assure you.  We’re not completely sure of the ingredient that caused it, but there’s a very strong candidate: avocado.  So no more guacamole for me, it would seem.

All that knocked me even more offline than usual, which is why further writings about HTML5, CSS3, and other topics of note have persisted in collectively playing the parts of Sir Not-Appearing-On-This-Site.  I’m hoping that by getting all this off my chest, I’ll clear up some of the blockage and get things moving again.

So how about you—what’s the first month-or-so of 2009 been like for you?  If it’s been similarly stressful, unload and lighten the burden.  If it’s been good, tell us about it so we can all share a little bit of uplift.  I know I could use a little!

• Life’s Rich Tapestry was published on Monday, February 9th, 2009.
• It was assigned to the Carolyn, Personal, and Rebecca categories.
• There have been twenty-four replies.

Yesterday afternoon, in a small office on the second floor of the Cuyahoga County Courthouse in downtown Cleveland, Ohio, Kat and Carolyn and I finalized our adoption of Rebecca.  There were a few witnesses to this: the social worker who has handled our case from the outset, as she did Carolyn’s; the lawyer who made sure all of our paperwork was correct; our friends Gini and Ferrett; and the magistrate who conducted the proceedings.

As I did with Carolyn, I’ve avoided mention of Rebecca’s being adopted, though anyone who’s been reading the site for the last several years would probably have inferred it from the fact that Carolyn was adopted.  And as with Carolyn, I avoided saying anything because the adoption wasn’t legally final until yesterday.  Up to that point, we were borrowing her from the agency, as it were: they were her legal guardians.  It was possible at any point for the agency to remove her from our home.  In the strictest legal sense, they didn’t even need a reason to do so.  Ditto the state.  Had we missed one of the six monthly post-placement meetings with our social worker, for example, or even not met the required schedule, custody would have been revoked.

Now, of course, that’s no longer possible.  Now she is ours as legally as she has been emotionally, now judicially recognized as the part of our family she’s long since become.  It was her sister who made it official: the magistrate had Carolyn stamp the legal decrees, so that it was she who made the adoption permanent and binding.  Most of the witnesses choked back tears.  I felt a few eye-prickles myself, but suppressed them to make sure I got the pictures I hope both girls will cherish as they grow older.

After a celebratory dinner with friends, as we got ready for bedtime, I took Rebecca into my arms and whispered, “Welcome to our family, little one.  Again.  And forever.”

• Adoption Day was published on Friday, December 19th, 2008.
• It was assigned to the Adoption and Rebecca categories.
• There have been no replies.