Where we are

Imagine that your child has a unique kind of cancer, and the best way to save her is to treat her at home.  Sure, there are hospitals that offer the same treatment, but the cancer hides while the patients are there.  It comes back with amazing strength as soon as the patient walks through the doors of the facility, back out into the world.  The long-term success rate for permanently removing the cancer when relying on hospital treatment isn't exactly known.  Patients with this kind of cancer can live with it for a long time, but upwards of 20% die prematurely (up to 10% within the first 10 years of contracting the disease), and only 30-40% recover entirely.

Even with home treatment, the cancer could return at any time, and long-term success is only around 75% likely.  Again, there aren't many studies yet to confirm this.  As of now it is a 'hopeful' statistic.  The treatment - akin to painful radiation and chemotherapy - is to be administered 5-6 times PER DAY by you or your spouse only, and the administration continues until she is healthy.  How long?  It could be 3 months, or it could be a year.

Now imagine that this kind of cancer makes your child think you are actually trying to harm her every single time you administer treatment.  And the stronger she gets - in fact the closer the cancer gets to being eradicated - the more the child distrusts you and tries to avoid treatment.  You find her letting ever-increasing amounts of the cancer-fighting chemicals dribble onto the floor.  You discern she's found ways of shielding the cancer from radiation.  You find her conducting activities in secret that make the cancer grow.

You know she can't help it - it's the cancer itself that's making her do these things.  And yet, sometimes, you fight her, because she is a teenager and you can become overwhelmed with the need to correct disrespectful and/or deceitful behaviors.  You try to see the cancer and your daughter as separate entities, but it's not always easy.  And every time you slip, the cancer whispers to her, "See - I was right.  They don't trust you.  They do want to hurt you."  And even worse: "They don't love you.  No one could love you.  You are a TERRIBLE, WORTHLESS PIECE OF SHIT."  And she believes it.

Only when she gets dangerously weak and frightened does she realize what you had been really trying to do all along - love her, save her.  And then she'll let you start again.  But every time, her health is dramatically compromised.  The cancer may not succeed in what it wants to do each round - kill her -  but each time, her heart has been significantly weakened.  She hasn't had a menstrual cycle in a year and a half.  She's lost months and months that could have been spent doing happy teenager things and looking forward to the future, but instead she's been enmeshed in a cloak of debilitating self-hatred and crushing anxiety.

Every night you go to bed combing over the day, looking for ways to make tomorrow better for her.  You analyze every treatment session and resist the urge to give her just a little bit less because she cries that it hurts so badly.  You resist the urge to give her too much, hoping to get her to healthy sooner - because though too much won't hurt her physically, there's always the risk that she'll run away from home.  You make plans for activities that you hope will distract her, but are careful that they are not ones to encourage the cancer.

Meanwhile your child has trouble seeing the appeal of anything she formerly enjoyed, and expresses feelings of hopelessness regularly.  She distances herself from you and her siblings.  She has a therapist who helps her with relaxation techniques, but the cancer tells her she doesn't have time to try them.  Your child is 100% emotionally and physically exhausted, and sometimes?  Sometimes she tells you she just wants the cancer to win.

Imagine you're in your second home-based round of the battle for your child, and it's just reaching the predictable place where the cancer has hidden her from you.  You are aware that this could be one of many rounds, but that the only thing that matters is getting her next treatment administered without letting her cheat it, and without forcing her to run.  It's a game of inches each time, and you have to stay focused even though you want to take a break. You have to go on with the rest of your life and do your job and care for her siblings like nothing else is wrong.  You have to ignore the whispers in your mind that, even with all the effort you exert and all the love in your heart, she could die anyway.

This is where we are.