Thursday, November 25, 2010

Gobble, gobble, thanks.

We here at Red Dye #48 and all of our fans would like to express our thanks to the following members of the medical community for touching our lives:

Nurse Marisol
Nurse Jen
Nurse Mandy
Nurse Morgan
PCA Krista
Dr. Setty
Dr. Rinalli
Dr. McKenna
Dr. Yeager
Dr. Adino
NP Amy
Nurse Amy
Nurse Sharon
Nurse Rachelle
PCA Jessica
Nurse Gina,
Dr. French,
Nurse Kelly
Dr. Nanagas
Dr. Shamburger
NP Kathy
Dr. Leoffler
Dr. Munt
Nurse Dottie
Dr. Wechsler
Dr. Dome
Dr. Perlman
Dr. Larrier
Nurse Anne
Nurse Brooke
Dr. Hoehner
Nurse Russell
Dr. Eck
NP Jen
Social Worker Laurie
Nurse Heather
Nurse Cindy
CPNP Carrie
Nurse Ruth
Nurse Stephanie

Friday, November 19, 2010


Myself and fellow editor Christy attended the 1st Annual Wilms Tumor Symposium, hosted by the Pablove Foundation last weekend.  I wish every pediatric cancer had this kind of meeting.  We as parents got to attend a medical conference with the medical professionals that chair the National Wilms Tumor Study Group.  As in the doctors whose names we have seen and heard since diagnosis. 

This crew included the one woman from Chicago responsible for reviewing the pathology reports and samples of every Wilms diagnosis in the United States.  Many families owe her a great deal.  Also in attendance the doctor who is the head of the group, the one whom often is the final vote in what treatment plan a child should be placed on.  To meet these people was a little intimidating, but exceedingly gratifying.  We heard from radiation oncology and about long term side effects.  We also heard from palliative and hospice care, they covered the whole spectrum of interactions and this disease.

What I want to share with you all came from a brief conversation with the man who reviews relapses and is compiling data on how, what, and where.  Relapse is important to me.  My son is a relapse data point on his charts.  I got to ask him things I needed to hear about how my son's cancer originally metastasized, and ask the hard questions about if it would have relapsed if we had followed a different protocol. 

At the end I asked him to confirm my son's event free survival rate.  I needed to hear that number again, to know my own team hadn't been softening the blow as they often do for parents.  he confirmed a range it was in, but no one could really know.  Then we had a conversation that I think eveyrone should have a chance to think about.

He told me, every child's survival rate is really 50/50, which sounds sobering, but in actuality they are either going to make it or they are not. One or the other.  All too often we get so caught up in, worried about which is more likely, but we can't know the actual statistic for our child.  each child is unique, their outcome unique.  Even if you tell a family the survival rate is 98%, somebody is that 2%, someone doesn't make it.  If you tell a family 25%, well, some do make it.  Survival rates are just a number, a statistic.  Good or bad, they do not decide if your child is going to survive this battle.

There is no survival magic eight ball.  Although he asked me to get one for him as well if I ever found one.

This conversation has marinated in me for some time.  It reminded me of a family who had been told their child was terminal, that the road was coming to an end.  They refused to ask or be told an estimate of how long their child had left.  They didn't want to be disappointed and feel robbed if the child didn't make it to the length they had been told, or feel they had rushed and crammed too much in when there was more time left to share. 

They just wanted to enjoy each day as a gift, with no expectation of how many more were to come.

Today I am thankful for today.  This gift of my son, of both of my children, of my family.  My son may live to pester me for car keys or he may not, but I have today, and no number can change that.

Monday, November 8, 2010

The Heartburn

Lately, lots of things have been giving me heartburn.

(I will not change my eating habits, no siree. I will eat generic Tums all the live long day.)

Most recently, my kids have been giving it to me as well. Is it the, umm, "sibling rivalry?" (That term makes it sound much less obnoxious than it appears in real life.) I have found that when Natalie is away for nine hours a day during the week, the number of fights does not decrease during the remaining five hours she is present with her siblings. It just gets more concentrated.

(I know, I know. It's so very unintuitive.)

And this, my friends, gives me heartburn. And I already ate all the yummy orange-flavored generic Tums and what I have left are the crappy lemon ones that taste like yellow chalk.

Thank goodness they love just as hard as they hit. (The kids, not the Tums. I have not been hit by an antacid...yet.)

But today's sudden onset of the hot spit comes from an entirely different source: scanxiety. It does not present itself in a gradual, gentle manner. It barrels down on you like a Mack truck. And I feel like roadkill. Roadkill with heartburn. You think you have a break and then it comes back in ten-foot tall waves. Waves of nausea.

Eve has scans. Must buy more Tums.

I think I know what my problem is.

I do fine with CT scans; it's the ultrasounds that put me in a rocking chair staring blankly ahead.

We first saw the enemy on an ultrasound. I am not a sonographer, but I knew that those dark masses should not be on the screen. I also know the techs are not allowed to tell you anything about what they see. I first felt my heart pop out of my chest when the tech stayed quiet and wouldn't look at us before leaving to bring the radiologist in to look at the pictures.

And the whispers. Oh, may you never have to be present while they whisper and point at the screen.

In fact, just writing this down is sending me into a mild panic attack. Snack break!

But a CT, well, there is no reason for you to be in the room if your child is sedated. I prefer to read a book in the waiting room. I have no reason to see the radiologist. He's just a person behind a wall that I'm never going to see, even if something is wrong. I don't need to make myself crazy guessing what their facial expressions, grunts, and wayward glances mean.

And better yet, I can't see the images.

But I just need to ride Eve's vibe. She's not worried about a thing.

And a chest x-ray to check for any metastasis to the lungs? Ha! I scoff at the cross-hairs of an x-ray. This is radiation for pansies.

Eve doesn't appreciate being asked to give up her chocolate-dipped marshmallows on a stick to sit still, though.

She is reunited with chocolate-dipped marshmallows. The stink eye is gone.

Good news is that the preliminary reports showed that everything is looking a-okay. No new tumors. No changes in the nephrogenic rests in her remaining kidney.

Only 18 more months of scans before she's out of the high-risk relapse woods. I'm just taking it one scan at a time. Like I have any other choice.

So now the scanxiety-induced heartburn is gone. Time to go to Taco Bell for our celebratory lunch!

(I much prefer the taco sauce heartburn.)

Two tacos, a crazy mother, and a full morning of appointments later...

I guess I can put away the Xanax until next year.

Monday, November 1, 2010

A Case of the Mondays

Just let me look that up for you, mommy.

This was how I spent the monday after Halloween weekend last year.  We had just been released from the hospital, on sunday afternoon, as in the day before.  Josh had decided to cook up a cocktail of H1N1, along with a relapse flare-up of C. diff, and gotten diagnosed with VRE in his intestines.  When we party, we par-tay.  Honestly it was one of the most miserably sick times I have ever seen him go through.  It also began our 8.5 months of contact isolation, to keep his VRE contaminated poo away from all the other immuo-compromised kids.  Which makes this picture above the first of Josh in what he came to refer to as "Josh's room," or the isolation room to the left back in our clinic infusion room.

It had been a fun weekend.  The nurses and staff had worn costumes to work so it had been an amusing admission to say the least.  I had made several "illegal" adventures up to the oncology unit from our overflow room on the neurology ward, those neuro people just don't have the red popsicle stash they have up on J5.

But Monday was still Monday, and very little to nothing stops the oncology train.  Mondays were hospital days.  Either admissions or clinic visits or scans.  Mondays were a certainty, Josh and I started our week at Nationwide Children's Hospital, 8am sharp, every Monday.  It was our routine.  My last normal Monday was in June.  It's now November.  I still wake up every Monday and think I need to be somewhere, like there is something I have forgotten to do. 

For weeks Josh would wake up to me kissing him awake and ask if we were going to the clinic or day hospital that Monday.  It's what we did.  Now we just don't anymore, and it feels so very strange. It feels a bit listless.  It's amazing how that metronome that you dreaded, that resonating toll that so often felt like a never ending dirge, can turn into a comforting routine, a consistency of annoyance.   Cancer treatment is chaotic, routine is your friend.

My friend ran away.  She was an annoying needy friend, so I am learning to be ok with her decision.

We majored in routine.  I got Josh ready to leave in the exact same process, we took our hospital bag of toys that went with the intended destination, clinic toys for the clinic, day hospital toys for the dayho.  We parked on the top floor of the parking garage, because it is number 5, Josh's favorite number, and the sign is red, Josh's favorite color.  No one parks on the roof at 7:40 am, in snow, but we did.  Because it's what we did.  It was our routine, it gave him control when he really had none.  I always asked where to park, and we always parked in the exact same spot on the 5th floor.  The path to each destination had it's routines, the same signs we would read, buttons we would push, volunteers to get stickers from.  He went to his same little isolation room in clinic after a stop at the vending machine for the candy in slot #54, yes it's been several months and I still remember the position number.  After months he stopped eating the chewy sweetarts, but we still bought them, every clinic Monday, and most Thursdays.

We'd say hello to the crayon signs, and ultrasound, and the ER, and radiology, and fluoroscopy, to the volunteer, and to the security guards, and then to our elevator.  We'd roll up on the floor, the fifth floor, for chemo and we would say good morning to the nurses' station and then head straight to the kitchenette to obtain frozen confectioneries.  Reading the signs loudly, we'd turn into the Day Hospital, where the nurses always assigned him Room #55, the dayho rooms just happened to run through the 50's, and the oncology unit was also on the fifth floor.  We were awash in Josh's favorite number.  The nurses even once made a fake #55 sign to hang over room #51 when we made an unexpected visit.  But it was his home away from home, he liked it in his little hole.  I knew just how to angle the tv, and the chair, and we had stocked the room cupboard with VHS all to his liking.  I was the only one who could see or reach the top shelf in the cabinet, so I kept extra diapers and wipes and supplies up there so I wouldn't have to tote them back and forth.  He never once complained about going there, it was what we did, it was where we went, it was the routine.  You can't fight the routine, it is going to happen with or without your happiness.

Josh could learn to tolerate any procedure as long as there was a routine that could be repeated in meticulous detail.  Don't you ever forget to put the "seatbelt" on his port needle, or there will be wailing till you take off the dressing and fix your egregious error, because, no, you can't just put the "seatbelt" on top of the dressing, it goes on first, then the dressing.  For every procedure we had our routine, and the nurses knew them all.  He even memorized the flow rates and run times for his chemotherapy treatments and would tell the nurses what values to enter, and what button to push to reach the correct sub-menu on the IV pump.  He was even allowed to push "OK" and "Enter" here and there.  He knew exactly where to stand for each scale to get the fastest weight reading, the spot on the floor for each measuring stick.  Routine.

If possible at your local health care facility, enact as many routines as possible.  Pick a day of the week and stick to it.  Always.  Even if it makes you hate that day of the week.  Always buy your parking token first, or on the way to the car, but make it the same, every time.  Even if your child is screeching through a procedure and there is biting and wailing, do it exactly the same way.  Restrain the same way, do things in the exact same order, announce them as they are happening.  "Ok Josh, the tubey is in, we are just checking for the red worm, then the seatbelt, your big sticker, and then you can put your train stickers on top."  Little ones need that routine, to assure themselves how much more is to come, that the unpleasantness will stop.  After about 5 months of port access hell, and developing and trademarking the "Josh Position" for port accessing restraint, he just decided to stop fighting and sit there quietly, all by himself in the infusion room chair, only 2 years old, and hold the vials for them while they got him accessed.  While he announced each step in the routine.

Our local Costco employees had to get the domain to our family blog.  They are in withdrawal.   Mondays always meant Josh would be in for his post-hospital smoothie.  Without fail.  Every Monday.  They miss the metronome too, but they like the hair, and lack of mask a touch more.

Find your routines.  Be it a special band-aid to herald de-accessing, or that you break into Hammer-time every time you pass the door for ultrasound, make them together and settle into their comforting powers.  Knowing the purple Blues Clues tape is the one we put in when they hang your last chemo of the day can have amazing power, especially when the next stop is smoothies.  Have your steps in each process, your landmarks, your celebrations.  Oh and the roof of the parking lot at 7:40 am is a great vacant place to run around and play follow the leader, and jump, and shout before a week of sitting in a little room and getting poisoned and carrying your IV pump home every night.  All the cool kids park on the roof.

Mondays aren't "big heart hospital" (their logo is the nationwide insurance logo with a heart in it) days anymore, but ask Josh about the weekend and he will tell anyone "On Saturdays and Sundays I take my Bactrim, one times in the morning and one times before I got to bed."  Dare I say it, a day will come, when we will miss the Bactrim metronome too.

Circled in Ink

Today is scan day for our good friend Dumbledore*, last night she had to get the scanxiety out of her mind, I think her words will touch you all.  We are all rooting for you Little Warrior, scan time was 7 am.

We call it living between scans. If you get the dreamed-of “NED,” you enjoy a moment
of … well, it’s not really joy or celebration. Relief. For the moment. And you learn
to dive into life. Not ignoring reality, but not dwelling on it, either. Living your new
normal. And you do things you couldn’t anticipate during treatment. Get stressed out
over stupid things like traffic and work deadlines like in the olden pre-cancer days.
Come in the house and DON’T wash your hands. Fuss at your kid.

And then … it’s time for scans. Scan-xiety kicks in. When? A week before, a few days?

Distraction helps. I’m in seminary. Big test last week, lots of studying needed. And a
world religions project. Then a big ass Halloween party at my house. Halloween. Trick
or treating.

It is the night before scans. A biggie. Two years ago tonight, Little Warrior walked out
the hospital, her regimen done. We even made it home in time for trick-or-treating.

Thanks to the distractions, other than a scary thought here or there, a worry when Little
Warrior complains of a stomach ache, scan-xiety hasn’t set up house in my head. Til

A ministerial colleague sends out a great article on hospice care. Halfway through
reading about someone dying of cancer, I realize: Perhaps I should wait a few days
before reading this. And then the thought: what if in a few days, I need to read this?

It is Halloween tonight. Others are watching slasher flicks, scary movies. The irony is
not lost on me. I am terrified.

I spoke with my father earlier today. He tells me that unless he is told otherwise, he just
assumes all will be well. It is a good philosophy, and I’m glad it works for him. But
my five year old daughter has had cancer twice. I am once-bitten, twice-shy. No, that’s
not correct. Twice-bitten? Oh, I know. “Trick me once, shame on you, trick me twice,
shame on me …”

My life might change tomorrow. My life and the life of everyone who loves Little
Warrior. And obviously, Little Warrior’s life.

But the truth is, every person living might have a life-altering experience tomorrow.
Every day. We are fragile and because we love, the amount of people whose lives impact
us, leaving us vulnerable to those life-altering experiences, is exponential.

I simply have one of those days circled in ink on a calendar.

May today be just another day on the calendar, for all of us, and especially the family of Little Warrior.

Edited to add: At 1:38 pm Dumbledore's facebook status simply stated, "Ned."  Relief unbounded for Little Warrior and her family.

*we call her Dumbledore, because she is just full of great wisdom and we sometimes feel a little Harry Potter like in awe of her.  The important thing is to realize, Dumbledore gets scanxiety too.