Thursday, October 16, 2014

don't give a care about a writing challege.....

Today I am sad, angry, tired, and exhausted.  I shook and jolted in my bed last night, trying to settle down to sleep, not even knowing I was nervous for a silly old regular blood work day.  It's nothing. Nothing new, nothing alarming, nothing scary.  It's just routine blood work for my kid with cancer.  Holy Frig, ya, with cancer.  I say it like, my kid with brown hair, or my kid with freckles.  It's all too common, and all too normal, and all too familiar, and all too horrible.

I didn't know that my mind and body were so affected, by going to the pediatiric oncology ward..and not for chemo..I mean. Hate that.  Makes me feel like I'm losing control, and I need to be in control.  I'm the mom of five kids who are depending on me to be well fed.  Fed with good foods, fed emotionally, spiritually, fed educationally, fed in all that they are and have.  I'm the one in charge most of the time! I need to keep my cool, not shake like a bloody leaf while semi conscious late at night.  Wine, Melatonin, what will work tonight...

Today we had blood work.  Luke's counts are 0.6, .1 above being neutropenic, not super...

I was informed via our parent oncology facebook group, that a girl, the same age as my Frannie, (about 12) passed away yesterday.  We have seen them at CHEO over the last years and spent time with them at camp.  She had overcome her first kind of cancer, was well for many years.  The chemotherapies used to cure her, gave her a brain tumour.   I wonder why we are as a family, placed in a group, a society of such ill children, who we grow to love, whose parents we care for, and pray for...what is this torture?  Most families don't have friends who's kids die...on a sadly regular basis.  Yes, I sound boo hoo and morbid, but it's true.  We don't just go into that hospital, close our eyes to those suffering and also living around us, and hope and pray for our kid to make it..and forget the others...NOT at all.  We pray daily, we see them, all the time.  We share an extremely difficult and common bond, a bond of a child with cancer, a life threatening that has no straight course.  A disease that can do almost any trick in the can be gone, reappear, appear out of no where, it can be hiding, it can be in any and every part of the body, it can be cured, healed, re occur, it can cause every kind of damage and can sneak around and be beaten, only to have the chemotherapy used to beat it..come back and kill.  It's never, ever, ever over.  And it's never, ever, ever, done.

I am sounding pessimistic, and fatalistic, but I am being honest and real.  We were not called to another country as missionaries, and followed that call.  NO.  We were not called to preach, to minister, to share, to speak. NO.  We found ourselves, not called, but enveloped in sad and scary world of bald heads, barf bowls, IV lines, surgeries, disease, hope, and lost-ness.  We found ourselves in a world of children, suffering, with cancer.  We are here.  We meet a lot of children over the three years of traveling to and from the hospital.  A lot of these kids, they don't survive.  A little piece of  what was once me, before Luke's dx, dies too with each blow...

You maybe think..back off, don't be close to them, don't befriend them all, are you crazy, you can't care about all those sad sad cases..but guess what.  We do.  The instant we hear, meet, or know of a new case, and old case, and ongoing case, we care.  It's in us to all care.  We share hope, we share grief, we share food, money, fundraising, hats, gifts, cards, hospital rooms.  We share the burden, as God intends us to. 

The world is full of hurts and pains, and we are keenly aware of this every day.  I have a lot of friends at this moment, who's children are in very difficult, and bad places in treatment.  It's all consuming.  It's terrifying.  I love these children, I love the parents.  Don't leave the side of the ones you care for, the ones you are related to, the ones who are true friends to you.  Don't let them endure it alone.  There is no telling when it's going to get all better, or go down hill.  We just don't know.

I wish to God, that we never had to enter this sad world.  I try to keep up my funny side, to make jokes, to tease, to go all blingy bling with my new S and Dot jewelery, to find happiness, and to be fun, but it's really hard.  It's lonely, it's scary, and it's our path, a path I don't even want to know exists, let alone walk on, from here on in.

Let yourself enjoy the choices you have, the ones you can and have chosen, because often our mission field is thrust upon us.  We are not trained, we are not prepared, we are not 'able', we are not strong.  Our hearts beat and break daily, and we slowly shrink away into pain and despair.  There is much much hope, and there is much too much suffering.  Make the choices allowed to you count for greatness, and open your eyes to the pain so many face ...especially as I paint you the pictures of families, with kids with cancer.  It's not gold ribbons and hats, it's fear and anxiety, and much loss. Much loss.

"we don't know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words." Romans 8:26--thank you Elise for reminding me of this!

Tuesday, October 7, 2014

Day 7, 31 day writing challenge

So, it's day 7, and I honestly feel like I've got nothing to say.

Today the rain comes down in straight arrows, straight down rain is amazing and beautiful.  It makes me think the air must be still, for it to come so level.  The rain comes in straight floods, clears up, and out comes the sun.  We sit on the front porch learning alphabets, we shoo away the wasps, eat fishy crackers, and enjoy our mostly rain proof rain cover and shelter.  The air is just cool enough to be be comfortable and fresh, but not cold, and not humid.  It's perfect.  The kids are doing school, and watching movies, the baby is napping, and I managed to get in my 5 k run (treadmill is a life saver).  Tonight dinner is being graciously delivered, and hubby goes to be a Juniour Youth group leader with our eldest.  Perfect.  The house is 'clean' (clean means I did many hours of work, and it's as good as it's gonna get.  Perfect.  The week has no major hospital visits planned, and no major chemo planned.  Perfect.

Nothing is perfect.  The boy is on steroids and screams that he hates me.  Not perfect.  The run I did was great, and full of prayers and beggings to God to heal my friends kids who suffer, and the parents who suffer along side. Not perfect.  The schooling is jumbled, the children are jumbled, the tv on makes me ...uncomfortable...Not perfect.

We can still enjoy the perfectly imperfect.  I still get little cuddles and my sweet four year old running up randomly to tell me 'I love you mama!'  I am blessed to have my home cozy, mine, and full of my kids, safe and sound under one roof.  I see the worlds hurts that at this moment are by passing me slightly to the left and right, and I crouch down, hiding my head, hoping to avoid a few more slung arrows of chaos, of life's burdens.  Phew, got a day of no major crap!

I thank the Lord, that this pulse of steroids is done, and wait for my boy to 'come down.'  I plan out my Stella and Dot order, in great anticipation, and try and figure out exactly what will make me shiny and's nice to be able to have something new, that doesn't cost us our groceries....I sit still as a nervous woman can, waiting for God to tell me his great wisdom...but the more still I sit, the more anxious I become..I drink the cold coffee, and race around, being anything but still..anything to avoid my thinking-fears that run through my brain--hamsters gone mad on a wheel.....

I ate some chocolate cake, put on some perfume, and nice clothes.  I count down the days to the end of cancer-daily..I wonder if it will feel more like a relief, or a second burden of fears and loneliness.  Will our family lose our identity that we've had no choice but to adopt for over three years?  Will we be relieved, scared, tired, worried, happy, resentful?  I guess, yes, we will.

Today is not that day.  Today we are cozy at home, and that in itself, is perfect.

Monday, October 6, 2014

Day 5/6 of 31 day writing challenge

I didn't want to write yesterday.  I had been away all weekend, and there are a lot of other burdens on my heart, that it didn't feel right to write about me, my problems, my life.  I feel like I have a whole world of hurt going on around me, and there is nothing I can really do, but pray.  I pray in every thing that I do.  I am wondering how things can go smoothly, and flip so quickly.  Mostly, I just wonder why life is so hard for so many.  In the Bible, there is explanation.  There is explanation that because Adam and Eve disobeyed God, we would forever suffer, and you know, we do.  We all suffer in our lives, some more than others.  The thing we need to try to do, or to see, I guess, is that through suffering, we can come to understand how Christ himself suffered.  He was lied to, he was persecuted, he was forsaken, he was lied about, he was tortured, he was mocked, he was killed.  In our suffering, we come closer to the Lord, and we can empathize with others who are in dark dark times in their own lives.

I pray for the hurt to be taken from those I love.  Hurt of sickness, of lies, of mental health, or past and present abuse..I pray for healing, for full healing.

Today, I hope to be more still, to be still and KNOW HE is GOD.  I think the world we live in is so beautiful, so amazing, with so so so much pain at times.  Let me tell you, if you are in a good place, enjoy, lol.  There should be good times!  Appreciate the sun shine, the food, the wealth, or the job, the healthy relationship, or the healthy child..the home you have, the friends who care, the education, the life you have.  There are many many who suffer, and as we live, we learn to find joys, when the the joy is clouded, we need love and compassion..we need others to love us, as he loves us.

Don't forsake those who ache, reach out....reach and love, we can't endure these heavy heavy time alone...and we shouldn't have to.

Day 4 of the 31 day writing challenge

 A little insight into what steroids do..and with Leukemia are often put on high doses of steroids, Prednisone and Deximethasone during the years of treatments.  These are to help fight off the bad cells.  High high doses are used as chemotherapy.  So it's not like steroids in inhalers or what not, they are strong, and they are nasty.  You can see Luke here with red red cheeks...and that is a side effect.

 Usually after 3 doses (he gets two a day)--he starts to act different.  My other kids are very very much affected by this.  They see him going from normal Luke, to meanie Luke.  He can attack, and hit, and screams a lot.  He paces, and he cries.  He is constantly would be me making meals and foods every hour most days...and chicken legs, and all things salty.  I don't know how many kids ask for a popcorn maker as a main Christmas gift..but that is what he wanted and got last year for Christmas.
 This is Luke just after diagnosis.  He was on a full month of high dose steroids..which left him unable to walk, about 12 lbs heavier than his normal self, sweating, fevered, angry, sad and unrecognizable.  He was very depressed.
 Luke couldn't stand to see himself in pictures. I think he's lovely all the time. xoxoxox
 Jason and Lukey in Movember, 2011...he's come a long long way since then..but still, the monthly doses are extremely difficult.  We have to basically stay home for a 7 day stretch and see how things...go....

Friday, October 3, 2014

Day 3 of the 31 day writing challenge

I have a lot to do today, as we all do, but I'm going to write a small bit.

Last night Luke had a rough time at church.  He was happy to be there, but exhausted and not feeling super.  He took his meds and was pretty upset, in general.  Instead of attending my group, with my hubby, I stayed with my boy, and kept him as happy as I could.  I think it's always hard to know how to play this cancer game.  If we continue on 'normally' it's a good attitude, but it's not always easy..and not at all normal.  Most kids are tired after a full day, but he's the only kid there who was at the hospital getting chemo and steroids...sigh.

In any case, we make the best of our situation, and are always striving towards health, faith, and optimism.  Did you know you can be joyful even during childhood cancer?  There is sadly always a worse case, or even a worse case scenario.  At the end of the day, I say, well, he is still alive, I can breathe him in, I can let go of the aching hurt, and I can live for this moment, and I do. 

Today he's taking more an more steroids and took three chemos yesterday and steroids.

Tomorrow I will be missing my boy, on usually his hardest day (Saturday/and Sunday) of his steroids pulse.  I will be praying so hard for him to find happiness and joy in his hard hard times.  My boy is full of life, full of mischief, and full of love. 

Yesterday, before we got out of bed, while it was still dark, and we had an early morning snuggle..Luke talked about his day...what to expect at the hospital, and knew that he could handle it.  He also talked to me about how things will go when he is all done, and how things may go, if he has a relapse.  He knows too much.  I can't promise him that it will all be alright.  He then said, 'if it comes back, and the chemos don't work, I could die.'
We lay there, and I snuggle him, and I said, yes, that sometimes does happen, but we are not planning on that.

Hold your babies extra tight, we never know what may come, but we need to hold onto each other, hold onto love and hope. 

Thursday, October 2, 2014

Day 2, 31 Days to Hope with Childhood Cancer

Hi! Exhausted over here!  Today was a perfect chemo day.  That's great, eh!  That means everything went as it should. Phew.  We had to be there for 8:30 am, and CHEO is an hour from here...Luke got his blood work done, via his port a cath and then we waited around a while until he got his chemo.  The resident Dr. nearly gave me a heart attack, as they like to do..maybe in hopes of practicing resuscitation on parents?  He said Luke's counts were good, except for one that was low..turns out, it was fine, just low from the daily chemo.  I honestly wonder if they don't realize  how on edge us parents of cancer kids are.  All we care about is the health of our kid.  Nothing wrong?  Don't worry me with WBC, ug.
 In any case two weeks ago, his neutropolys were sky rocketed to 8.0 and today, they are back down to 1.1, which is find, not too low, and not too high.  Things are where they should be.  He's starting his next round of steroids tonight, and that continues on until Tuesday, but as you all know, that really then takes about to Saturday next, to be out of his system.  His siblings are ready for the 'meany medicine.'  Sadly, we are never really ready to watch our boy go from nice and slightly difficult, to mean, and sobbing, exhausted, red cheeked, angry, violent, starving, sweating, and inconsolable. 
I'm starting to feel it time to also confess that I am going away this weekend.  First time I've ever gone away in the the 11 years as a mom.  I'm going on my first ever Christian retreat, and poor hubby is home with the kids, and Luke on steroids.  I do know they will be fine, and in super great hands, and I do know it's good for me to keep building my faith, and my independence...however, I'm going to feel rotten leaving Luke, knowing how hard he finds steroids...even with mama here by his side, rocking him.


So that was today so far...we are tired, we are thankful, we are feeling like we got this under control, but we know at any point, any bruising, and bad blood results, and off behaviour, and fever, can send us right back to square one..frig.  I wish there was a magic cure.  A cure that stuck for sure. 

 Today while we had our little chemo, we prayed and thought of our friends who have children who are a lot more rough.  Kids who are in a place we were, or a place we never want to be..our minds and hearts keep going there.  I know I need to keep a healthy distance, but I love these families.  I look for little pleasure and little joys, and I live my days with thanks.  Do you?

 Here is my strong boy, who doesn't look the image of 'cancer' three years in, does he.  Lucky lucky Lukey!  He's got a full head of hair, he's chubby, thanks steroids, and he's got a lot of energy.  Woot woot.  What lies behind the scenes in our lives, is seldom seen, and seldom obvious.  We never know what someone is enduring, has endured, or what they are feeling.  I know now why I love the 'wordy' art work around my house, signs and tattoos help label what we want to say, or how we feel. 

Some days, I've had Luke wear our pin that says 'childhood cancer sucks,' but that isn't the answer either.  Of course we want  the world to know our hurt, so they can offer some solace, some compassion, some help.  Over time, I realize, we all need to be seen, heard, loved on..but all the shouting from the rooftops really does little...
I still am the one who goes to bed with the heavy heart, heavy burden, and wake up with this responsibility, and privilege.  No matter how many people know, it's still our family and our life..but I tell you, it does feel good to know we are loved and supported, and for this, I thank YOU!

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.