What if someone you loved had cancer?  Would you think the word “remission” would be the end of the terror?  That your fears would be gone, right?  That it’s okay now, and that your baby or your husband or wife or mom or dad or sibling is going to be fine now, and that you can all move on with your life?   That’s what I thought.

When we were fighting Sophie’s cancer, all I thought was I just want her in remission.  Then she was.  And I took this deep breath and felt like the weights were off my shoulders.  That lasted a week and a half.

The truth is, once you are on the remission side of cancer, your new fear is that it will come back. Or that the long term effects of the cancer or the chemo will permanently injure your loved one.  Remission is not a cure.  It is the beating back of the cancer.

You have the constant fear that it will come back.  And this isn’t all in my head.  Langerhans Cell Histiocytosis (LCH), is the type of cancer my daughter had.  She had it in multiple organs, classifying it as “multisystem LCH.”  And she didn’t respond to the first line of treatment, further classifying it as “recurring” or “refractory.”  This kind of LCH has a very low survival rate, and if they can beat it down, like they did with Sophie, it has a high relapse rate.  So, yeah, the fear of it coming back is significant.

Any rash, cough, elevated liver numbers, vomiting, diarrhea, excessive sleepiness, dizziness, sluggishness, or unexplained fevers could be the cancer coming back.  As you can imagine, having an LCH warrior child in the public school system can lead to many many panicked phone calls with oncology over things that turn out to be anything from a bug bite to a cold.  And all sorts of scans and ultrasounds and blood tests to verify that it’s not back.  And those are on top of the yearly scans and blood tests that we already have to do.  The kid glows in the dark like a day-glow light at this point.

And that doesn’t even cover the long term damage the cancer, chemo, and treatment caused.

She has permanent liver damage, an enlarged spleen as a result of the liver damage, and yearly endoscopies to make sure she doesn’t have a massive GI bleed again.  She’s had two from the liver damage.

She’s still immunosuppressed.  So she catches every bug she’s expose to.  It’s been nearly 7 years since remission, 5 since the chemo stopped flowing, and her white blood cell count, which is what they use to determine if you can fight off an infection effectively, still hovers in the “low” normal range, if it’s even in the normal range. So a cold is a big deal.  Infections are terrifying and can and often do lead to inpatient stays and nights where you pray they don’t die from something normal kids can fight off easily.

An allergic reaction to something like a bug sting is 10 x worse than it would be for a normal kid because her blood doesn’t react like it should.  I don’t fully understand it, but where your kid might get a bit of a rash, my kid becomes one huge hive.  It’s terrifying to watch.

And last week we learned that the oncologist wants to do a neuro-psyche evaluation because “nearly all” (the words of the physician’s assistant) of the kids that go through treatment like Sophie did end up with some form of long term psychological effects, be it anxiety or PTSD of their own.  Sophie has always had anxious responses to random things, so I can see it. And she’s socially awkward and obsessive over some things.  We just thought she had Asperger’s like Dan and I, and we were working towards getting that evaluation, but the oncology department told us it could be resulting from the cancer treatments.   And I had no clue.  Three years…  I have fought the schools trying to get them to see what I was seeing, and here all it took was a phone call to the oncologist.   Ugh.

So yeah, Remission is GREAT!  And it’s INCREDIBLE!  And I LOVE IT!  But its not the end of the road.  Not by a long shot.  So if you know someone who had cancer and is remission, or who got their babies through cancer and is in remission, don’t assume that everything is honky dory now.  Don’t just assume that they can go anywhere and do anything that they could before the cancer, or even that they’d want to.  Cancer is hard.  And remission is hard too.

And if you are out there, in remission, or are holding a loved one that is in remission, and you are still struggling, it’s okay.  YAY for your remission or your loved one’s remission!  That *#&%ing ROCKS and you guys are all bad@$$ warriors!  And it’s okay to still be struggling.  It’s hard stuff to take.  It’s exhausting and terrifying and it hurts still.  You.Are.Not.Alone. Keep going, and know that you are one of so many that have been here before.  And you guys will get through it.