Definitely Maybe

Thanks to Facebook memories, I got a bunch of notifications that this article I wrote for Touched by Cancer magazine had been published four years ago.  As we prepare for some upcoming visits with doctors to tackle a couple of late-effects, this seemed worth revisiting.

To say that raising kids denotes eighteen-plus years of uncertainty is an understatement.  Will they grow up to be well-adjusted?  Will they bring home friends that I approve of?  Will the school system reassign them to a new school for the third time before the fifth grade?

Perhaps the most uncertainty I've faced as a parent started the moment the pediatrician felt a lump in my daughter's abdomen.  The lump.  A lump of utmost significance.

Maybe she was just constipated.  Maybe it was a cyst.  Maybe it was that crayon that I was sure she swallowed whole.  But out of all the c-words it could have been, it was cancer.  That much was certain.

Fast-forward to the hospital.  There was something growing on her kidney.  It could be neuroblastoma.  It could be Wilms tumor.  Wilms has a good prognosis, we are told.  No one mentions the prognosis for neuroblastoma.

We walk through the looking glass into a world where absolutes are non-existent.

Scans upon scans upon scans give clues that it is probably Wilms tumor and she will be treated as this is the case.  After all, you can't be certain until the tumor comes out and it is sent to pathology.

The typical treatment for Wilms, the cancer with the good prognosis, is to immediately remove the affected kidney and then follow with chemotherapy.  She would certainly go into surgery the next day for some life-altering operation.

Until more scans revealed that the cancer was in both kidneys.  This isn't the Wilms with the good prognosis we were prepared for.  This is the five percent of kids who have the dubious honor of having a cancer with a fifth stage.  And while Wilms patients typically have one tumor in each kidney, my daughter had thirteen masses between the two.  And we're not sure if they are all Wilms or some of them are nephrogenic rests that will one day turn into Wilms, but either way, you can be certain that it's not the Wilms with the good prognosis we were talking about when you came into the oncology clinic all teary-eyed two days ago.

We found that there was little else we could be certain of.  As in, we have a 9:00 MRI appointment.  As the clocks strikes noon we wonder aloud, what time will she be taken back?  “Soon.”  Silly me for assuming it would be 9:00; that was a rookie mistake.  When will the next round of doctors be in to press on her belly?  “Soon.”  When will you allow her to eat or drink again?  “Soon.”  Soon is nurse-speak for please stop asking us.  We have no idea, but we guess it won't be soon at all.

When are you taking this cancer out of my daughter's major organs?

We waited for what seemed an eternity for doctors around the country to look at her reports and agree on a plan of action.  I found this was the hardest time for me, being in cancer-limbo.  There is something deeply unnerving about knowing that your child has something deadly in their body that doubles in size every ten days and just waiting.  Waiting to hear what the next step is.  I'm most certainly not great at waiting.

It was decided that she would get six weeks of chemotherapy before surgery.  Or twelve weeks.  Can't be sure until we get going and see how she responds to treatment.  The hope was to shrink the tumors enough that parts of both kidneys could be saved.  If kidneys wore shirts, they would most definitely read, I'm kind of a big deal.

The radiation-oncologist came in to visit us.  Just in case we had to meet again at a later date.  Is my daughter getting radiation?  Maybe.  Maybe not.

Will her counts be high enough to get chemo this week?  Maybe.  Maybe not.

Will a delay in treatment be detrimental to her outcome?  Probably not.  But maybe.  Can't be sure.

Will she get all these side-effects on these consent forms I had to sign?  Maybe.  At least a few.

Will she need a kidney transplant?  Too early to tell.  A few kids have.

Will I be fishing my daughter's hair out of our spaghetti?  Probably.  But some kids don't lose it.

After the first six rounds of chemo, more scans showed that the tumors responded very well to treatment.  This would lead us to believe that the histology would be favorable and surgery was just on the horizon.  And we spent three whole days getting excited about finally having the big day where the cancer comes out.

Until it was decided to do it all over again and see if could be shrunk even further.  I should have figured out this pattern by now, that whatever you think will happen, most certainly won't.  Except when it does, but only after you think it won't.  Oh, the cancer world is an oscillating fan that you might throw pennies into only to have them fly back at your face at warp speed.

The tumors didn't really shrink that much more for all of the extra poison we pumped into her tiny two-year-old body.  Stuff so toxic that the nurses administering it have to suit-up.

In the end, we got the answers to most of our questions.  In the end, they were only able to save part of one kidney.  But the good news was that the initial pathology looked great and the tumors appeared necrotic.  She would be subjected to a much less-intense chemo schedule for the next few months.

Until the final pathology came back with an anaplastic tumor, which is apparently a game changer, because we ended up having to meet the radiation-oncologist again.  And no offense to that doctor, but I would have been fine if I never saw her again.

Never had to see any of them again.

For a week we went back and forth.  The will she/won't she need radiation scenario put other situations into a more trivial light.  Suddenly the matter of whether my kids' school has an active PTA seemed less and less important.  We logged hours of conferencing with the oncologists and tried to make the best decision we could on the information provided.  It was all so...uncertain.  There wasn't a case like our daughter's for which to compare.  Do we really want to risk aiming radiation beams at the small amount of kidney she has left?  Do we want to risk letting a rogue cancer cell take over the small amount of kidney she has left?

We went all-in.  There's so much pressure as a parent having to make the ultimate decision, especially one we didn't spend the better part of a decade at medical school learning about.  If this was the right decision, we could sleep at night.  If not, we had no one to blame but ourselves.

It's been years since we had to make those decisions.  They seemed to be the right ones.  My daughter currently shows no evidence of disease.

But the future?  What does that hold for her?

I attended a childhood cancer survivorship conference, interested to learn about the late-effects my kid may experience.  It took me a month before I was ready to look through my notes, because it was quite overwhelming to absorb what may lie ahead.  If you were to look at what I wrote down, you would think I was certain that my daughter would experience every late-effect based on each bullet point UNDERLINED AND CAPITALIZED WITH LOTS OF EXCLAMATION POINTS!!!

I can't be certain she won't get a secondary cancer.  I don't know the extent of heart damage that has been done.  Hopefully her liver will hold out through college.  Bowel obstruction?  A gastrointestinal bug will never just be a gastrointestinal bug again.  Orthopedic issues from radiation through the spine?  Maybe her backbone will curve into a giant question mark.  How apropos.

I was happy to attend that conference because it meant my child is a survivor, even if I left feeling that everything I had to sign on those treatment consent forms was going to happen to her.

But maybe they won't.  The only thing we're certain about is that we don't know, really.  It's not like we had choices on the treatment.  Either you treat and try to save your kids, or you don't.  It's certainly no choice at all.

I really feel sorry for my daughter when it's her turn to start filling out her medical history, though.  Perhaps one of the few certainties our survivors have is a future filled with hand cramps.