Wednesday, October 1, 2014

31 Days of Hope and childhood cancer

So I've been encouraged by a friend, and fellow blogger, to take part in a thirty one day (all of October) blogging daily challenge.  It's probably going to be more of a challenge for anyone to want to hear, or read what I blab on about, than it is for me to find things to say.  I'm one of those people who is never at a loss for words....even, or especially if you were hoping I was! (see, I'm truly not).

      I've written a lot about Luke, and most of the friends who have been reading my blog already know our 'sob story.'  It's unique for those who have a normal happy family.  That is a joke too, because we all have burdens, some more major, some minor, some that actually haven't happened yet..and I was that category too, before the BIG C.  Every single day, I choose HOPE.  I wake up after a wrestles night.  A night of bed hopping, and not the kind of soap operas, the kind of mom's with 5 kids, who don't sleep well, and who don't sleep alone.  I dread going to bed, because I know it's nearly as much work as being awake, but I feel ripped off, cause it's supposed to be ...restful..or it could be?? Maybe...ANY way, so I have nightmares every night.  The kind where I have someone telling me I have face cancer, or terminal cancer, or that I am dying..I have nightmares about abandonment, about losing my kids, about people hating me.  I go to bed praying, and I go to bed optimistic, yet, all the garbage that is left un faced during the busy homeschooling, toddler training days, has to surface..and it surfaces in nightmares.  Each morning, I am blessed to awaken.  Just that, not awaken rich, or perfect, or young much anymore (forty, will you be kind??), but just awaken.  I am thankful.  I don't let myself get out of bed until I ask God to give me a great day, a great attitude, and more chances.  The days I am home, and I feel stressed, I remember, that least we are under one roof.  I think of the many many many nights we scrambled to find baby sitting, to trade off shifts at the hospital.  It's been almost a year since we had Luke as an inpatient.  Wow.  I think tonight, ...31 days of hope, good Lord, that's friggin' easy, we've been at this kid cancer thing, for 3 years this month..every bloody day.  Ya, I swore a little, but cancer can take THAT.  And if I said it with a a British accent, we all know it would sound ..kinda cute, right?

 So I am hopeful.  Life was once pretty much sailing on perfectly, then Luke was diagnosed with High Risk Leukemia, and we've been swimming ever since.  I am hopeful that one day, I'll be forgiven, and forgiving.  I'll shrug my shoulders when someone asks me what it was like.

"Did everyone support you guys? Did you feel loved? Did you cry a lot?  How did you do it?  When did you find time to teach your kids?  You had a fifth baby during all that? You aren't divorced after all that? How is he?  Guess life is back to normal?  It's all good now, eh, now that it's done?"

I got no, ya, I'm hopeful.  Hopeful that I can be honest without being hurtful, that I can smile and nod, and have the grace to love and forgive the unforgivable.  That I can honour God, and never ever give up, and HIM.  That I can let go of the hurt, and let the nightmares turn to beautiful optimistic dreams of unicorns and rainbows.  Nothing will get back to normal.  Our normal shattered in the ER room, that night.  That night when they said, your son has cancer, Leukemia, he isn't going home, and neither are you.  He needs a blood transfusion, right now, he needs chemo, he needs platelets, he needs steroids, he needs to get hooked up to IV, to have a port put in for years, he needs 3.5 years of constant chemo, to have any hope of living..and if it doesn't start now, he'll die.

I am hopeful, I am sad, I am angry, I am exhausted, I am a mom of five kids, I am a wife, a daughter, a sister, a grand daughter, and a pretty unavailable friend for the most part.  I am a strong Christian.  That doesn't mean I'm not broken, it just means I wont let ANYthing shatter my faith, even when all seems like it's falling, I'll still stand.

So, day one is this.  Tomorrow we go to the hospital, bright and early.  Luke gets weighed, measured, blood pressure, temperature done.  He gets hooked up to his IV, he waits for the blood work to come back.  We get chemo. Vincristine, again.  We get unhooked, we go home.  We take steroids, with Ranitadine for his stomach issues from the steroids (Prednisone in high dose acting as chemo) he takes Methotrexate and he takes Mercaptapurine (two oral chemos in pills)--and then, if all goes well, we go to church!  But tonight is the night before, where I pack our bags, and bring his meds calendar, and get his emla cream and patch ready, and pack my phone, it's cord, the hats I've made for the kids who are still bald..where I can't fall asleep, and hubby makes sure there is wine, for either the night before or the night after.  Where I dream of the horrors I've seen.  Mothers looking at me with pleading eyes and streaked cheeks as they've just been told, there is no more hope.  Children vomiting in the middle of the hallway, sometimes mine, sometimes yours.  Bald heads with long scars on the skull, where no one should ever ever cut.  Obese babies who have been so pumped full of drugs and steroids, they are unrecognizable, and wont even look at their own reflections.  Children missing legs, children deformed by tumours protruding, children so white, and so pale, only their eyes peek over the face masks.  The images don't fade, they are real nightmares we face in the pediatric oncology ward.  These are the lives of my friends, their kids, my own child.  This is what make my hands shake as I put out tomorrow's provisions, one's that are so minimal compared to what we've faced in the past..but keep bringing up the past, over and over and over for  years, day in and day out.  Post traumatic Stress disorder, we are parents of war, with children who soldier on in battles so ugly, no one can look for long from the outside, but us mothers and fathers, we look on daily.  From home, at the hospital, and at the cemetery.

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