Wednesday, December 10, 2014

Robbed....

I spend so much time analyzing my emotions, denying then, feeling guilty for them, suppressing them, trying to change them, justifying them, hiding them, admitting them...it's exhausting.  Why do we do this to ourselves?  Why can't we just let ourselves be sad. Plain old sad.  Or happy, exceedingly happy.  It's like there has to be a hashtag associated with all our thoughts, our emotions, ourselves..sometimes things just stand alone..and sometimes they don't, but we can't always put a voice to them.  Sometimes the voice we DO put them, aren't good voices..they are negative, hurtful, accusatory.
Some times I think I don't have the right to complain.  I say, well, my son hasn't lost a limb.  He hasn't relapsed.  He hasn't died...he isn't brain damaged, he isn't lost to me, he isn't in radiation, he isn't away from home...

Some times I think I have the right to complain.  I say, well, your kid isn't suffering through steroids every month.  Your kid isn't getting poked and prodded, hospitalized. Your kid doesn't have issues like mine, doesn't have bowel problems daily, friends who die. You don't wake your child every single night for years to give them oral chemo.  Your family hasn't lost friends, family.  If you miss church, it's because you want the time off, not because your afraid of what your kid will get there, or how insane he'll act there, or is too sick to attend.  Your family can do what they want, when they want, no worries about germs, no worries about play dates..no social issues, as the cancer family...

Robbed.  I think families who have a child with cancer often feel robbed.  Any major illness I'm sure.  Robbed of trust.  Robbed of innocence.  Robbed of time, of support, of help, of simple days.  Robbed of the mundane.  We are robbed of money, of health, of purity of childhood.  Robbed of that time..that time that was 'supposed to be.'  The ages of 4, were robbed to major life threatening treatments.  The year of 5. His year of 6. Now, his year of 7.  I will never have him again as a four year old boy.  That time, it's gone. It was sick years.  It was scary, hard, awful years.
What happens to robbed families?  They have to rebuild.  They have to find new eyes to see through.  Not just to GET THROUGH the hard times, the chemos, the pokes, the steroids, but to actually LIVE through them, as real life.  We can't just count down, though we do...because that would mean those years, are lost for ever..they were hard, but they were/are ours.  They were what we had, they can't be fixed, but they can be accepted.


I am dreading February.  Not because he'll finally be 'done treatment' but because I dread the reaction of others and myself...I don't know if I'll be happier.  I feel I should be happier.  I don't know if I'll be relieved.  I think I'll actually be more nervous.  I don't know if I'll be grateful.  I think I may be the angriest yet.  Will we feel like, 'wow, we've won, he did it, we did it?' When Jason and I talk in the dark, in the night, we say such things as....'I can't believe how long it's been, how hard it's been, and when it's over, it wont really be...over...'

You may think that negative, or pessimistic, or  depressing, or fatalistic.  We just think it's how we feel.
I'm ready to steal something back.  I'm ready to rob.  I'm stealing back my voice, my life, my health, my family.  I'm stealing back my son, my beliefs, my courage, my strength.  I'm stealing back my independence, my future, my past, my hope.  We have all been robbed, have we not?  We all have choices of what to do with these infractions that are put and placed upon us.  Pity is good for a moment, and then it's time to look around.  I think that this journey, this robbing hard time, has tried to hold us under the water...and we battle daily, to resurface.  We will always resurface.  We will not be drowned out, held down, or sunk.

Christmas time is a hard time of year.  I admit, I'm a pretty big baby this time of year.  I am not big on the gifts, the baking, the decorating, the hype, it makes me nervous, poor, and stressed...I'd rather just eat a nice meal, and go to church..but our world doesn't work that way.  I will be spending Christmas eve, the day, the 24th, at the hospital with Luke, getting chemo, starting steroids, then coming home to take two more chemos.  I think this will keep everything in perspective.  God means us no harm, but he does know, what will make us think....perhaps we will make it to church, if Luke feels good enough, but perhaps not...the week will be filled with presents and hype and a little 7 year old boy who will be very distraught on steroids.  I will not be robbed.  I will not let the situation that I can't control, take from me, what I can control.  My joy is mine.  My family is mine.  My Jesus is mine. And my attitude is mine.

#gottalettheemotionsbewhattheybeandlivelifetothefullestbooya  : )

hashtag that , baby





Thursday, November 13, 2014

perfection in the mess--my life.

Today was a PERFECT DAY. You, know the kind of day, where you feel like you've been given second, third, one millionth chances?!! It was perfect counts and blood work. Luke was asked to be seen by his/our fav. doctor, just to SEE him, not to check him,not to poke, prod, question, worry, just to say hi and get a little Lukey love. Can you imagine??? In a world so busy. Blessed.
Then, I had the utmost privilege to bring sweet Pranay a doggy hat he requested, and he liked it!!!! He went to sleep upstairs, and rumour were, that Lukey Love hats made the recovery room stop and look. Blessed are the little things we do, to love others. We all need and want to be loved, to be special, to be thought of, to be cared for. I always am slightly embarrassed by my lack of true skill and crochet ability when offering kids hats, but my heart is in it, and that's what they feel. I felt like a crochet queen being able to offer a little compassion through the stitches I made for these heroes. ---The staff (Molly Penny, etc.)even said they purposely send my hats to the kids in other hospitals away for transplant!!! I felt honoured!!!

THEN, Luke had a blast with Jeff, uncle Jeff, the volunteer...his friends, and the staff..and I had the chance to deliver a few more goodies to 4 North...up there, I was asked, okay, BEGGED...for more craft bags for the up and downstairs onc. rooms..our church, Trinity Bible Church of Ottawa (Mary Ruth Downs) has previously provided hundreds of craft bags for the kids in the onc. wards. I loved today. Today was not full of sadness..though there is much pain, and worry, and grief, there is much much hope. Little things CAN and do make a difference. We felt loved today, we felt worthy, we felt wanted, needed, appreciated and respected. ...and on the way home, played the amazing song 'Life is beautiful'---if this is borrowed time, we'll take it. If the other shoe drops, we'll enjoy a one footed hop..if it's not going to last..it's great now..cause you never know..and time is precious.--

I almost forgot!!!!!!!!!!!!!!!!!!!! The staff member I prayed for for the last two weeks, who was having very rough personal issues..and confided in me..I had had the opportunity to share Christ with her, and she knew nothing about God, his love, or the church..she went to church!!!! I gave her all the churches that she was interested in trying, according to her background, and she and her sister went! I have a feeling this stupid cancer world is NOT going to entirely crack me. Speak up, act in love, admit faults, love on others..and even when it all crumbles..the shattered pieces still have beauty.

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 illness..one that has no straight course.  A disease that can do almost any trick in the book..it 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 happy...it'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 are...kids 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 hungry...it would be me making meals and foods every hour most days...and meals..like 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.

Blah.

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 ..at 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 answers...um, 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 times..at the cemetery.


http://saradahyland123.blogspot.com/2014/10/31-days-of-hope-and-childhood-cancer.html






Monday, September 29, 2014

September is Childhood cancer awarness month

September is coming to an end.  The gold ribbons that us parents have been wearing, the information we've been trying to put out there, for the world to see, the pictures of our kids, the rallies, the events, the races, the gala's the fundraisers...they are coming to an end.  I have to take down the sign in my yard, my window.  The month of awareness has been busy, exhausting, inspiring, surreal, sad, amazing.  The reality is that, it's over for everyone that isn't in it.  But it's not ever over.  It's not over for the kids in treatment.  For the kids about to be diagnosed.  For the kids in transplant.  For the kids in heaven.  For the parents in pain, the parents who are numb, the parents who watch support come in flocks and fear it will fade away.  It's not ever over for us, and it never will be.  Once a family is affected by their child having cancer, they are ALWAYS a cancer family.  They are either mourning the loss of their child, helping their child get through active treatment, or holding their breath to see if it will all 'work' after all the thousands of chemos and pokes, and medications.  Will it work?  Will it work for a month?  For a 6, for a year, for two..for a life time?  At what cost??

We are thankful, we are blessed, we are joyful, we are amazed, we are also afraid, paranoid, scarred, exhausted, changed, jaded, socially messed up...and more.

September has been amazing.  I can't believe all the amazing fund raisers, the runs, the speeches, the events, the gala, the lighting of Parliament hill..it was a month of hope, of spreading support and awareness, it was a month of heroes, being seen as heroes!  I loved seeing Luke being recognized, loved, cared for. 

As October starts this week, I'm filled with a sense of ...of...loss.  It was three years ago, October 28, 2011 that Luke was diagnosed.  I wont ever get that back.  I wont ever have my 4 year old boy as a healthy boy, or my 5 year old boy.  No, those years were sick years, very sick years.  Very sad, and hospital bound years.  Year 6 and 7 are better years, he's shown so much improvement, but it's still a fresh wound.  We still give him oral chemo EVERY SINGLE NIGHT.   We still go for chemo EVERY SINGLE MONTH.  We still get steroids, for a week, EVERY SINGLE MONTH.  We still go to the hospital, every second week.  Blood work, chemo, steroids, antibiotics, it has not stopped.  We are nearing the end, for which we are grateful.  But, as all childhood cancer families know, it's never really over.  He will have blood work, and follow ups, for his entire life.  I wonder if I'll ever sleep properly again.  I wonder if my other kids will continue to harbour the resentments of a 'spoiled and mean sick brother.'  I just don't know the future, no one does.

September.  September I remember children who have passed away.  I meet new children diagnosed.  I see children go onto other places, seeking more intense treatment.  I see children fight for their lives.  I see children ring the victory bell.  I see children who just want to be children.

Let your gold shine on beyond September.  Remember these little fighters who go from event to event with sore tummies, tired legs, exhausted bodies, confused thoughts.  These children, like my Luke, who never hopefully will have to fight this hard again, but should they, will prove to us all, that we can do just about anything. 

Keep supporting the kids that struggle, the families that are running on empty to keep up the hope.  We need you!






Wednesday, September 10, 2014

Speech from the Winchester Event

Hey folks, I did a speech last Sunday at Ann Brady's Childhood Cancer Awareness Event.  The event raised 705$ that will go directly to CHEO for the Pediatric Oncology Research Department.  Very, very happy to see money going into research.


Here are the bracelets I have collected...I'd say that this would represent about a year of appointments.  When Luke is in for more than one day, it is the same bracelet, so one may be for up to three weeks stay.
 CHEO bear was there!!!!!
 My kids and Jason were all very supportive of what I had to convey, and I was really proud of how well they did--especially Luke as he is on his steroids pulse, and that makes him very very angry, sad, agitated, hungry...etc.




This is what I spoke on Sunday September 7th:


     A.L.L, A.M.L, Lymphoma, Brain Tumours, Wilms Tumour, Neuroblastoma, Ewig Sarcoma, Rhabdomyosarcoma....and the list continues.  these are just some of the most common types of childhood cancers.  When we meet other parents at the hospital, at CHEO, this is how we label our kids, according to 'what they've got.'

  Lately, I've found some startling statistics.  I'm actually really apprehensive to say them here, out loud, with kids present, but I believe we need to know.

* One in 285 children will be diagnosed with cancer, before the age of 20.
*The chances are, that one out of five children with cancer, will be killed by their cancer within 5 years of diagnosis.
*The chances are 1 in 5, that the 5 year survivors will be killed by their cancer, a secondary cancer (due to chemos) or long-term effects of the 'cure' in the 6th to 20th years of their lives, post diagnosis.

We actually have had to sign papers acknowledging that the chemo they are going to administer may likely cause another kind of cancer, infertility, and heart conditions--if they survive.  But...that chemo isn't exactly an option, so there really isn't a choice.  (I personally told the Dr. that they had a bit of time then to find the cure for what next cancer they are giving my son...down the road...).

*Next, chances are 98 of the 100 that DO survive, will face long term effects from the treatments.

(here I showed Luke's long long necklace of courage beads, to show the audience what treatments consist of).

     Luke has A.L.L--Acute Lymphoblastic Leukemia, High Risk.  He was diagnosed on October the 28th, 2011, at 6pm.  I'll never forget that night.  It only took the ER team three hours to diagnose him.  He had 90% Leukemia.  We were told that he would have died, in two weeks.  Treatment began that very night, with a blood transfusion, and has continued on every day since.

    Since diagnosis, Luke has needed 14 different kinds of chemotherapies.  He has had over 24 sedated spinal taps with chemo injected into his spine and brain.  He's had two portacaths put in to allow for easier IV chemos.  He's had a broken port tube surgically removed by a cardiologist where it was circulating in his heart.  He's lost all of his hair, twice.  He's been advised  to not pull loose teeth out, as he could bleed uncontrollably.  He's had more blood and platelet transfusions than I can even remember.  He's spent weeks on end as an inpatient in isolation.  He's been sick with bacterial and viral infections due to his body being immune compromised.  Our son has gained so much weight that he could not walk.  He's lost so much weight, that he had a feeding tube for three weeks .  He's had such adverse reactions to chemotherapy requiring hospitalization.  Nerve pain rendering him immobile.  He's vomited more times than anyone can count.  He nearly died from an anaphalactic reaction to a necessary chemo. He's had over 50 injections of chemo in his legs causing bruising and a lot of pain.  He's had homecare nurses come into our home to administer chemo into his arms, causing bruising, fevers and hospitalization.  He's done four weeks of planned high dose inpatient chemo.  He has constant 'regular' IV chemo,, daily oral chemo, many pulses including five days each month for years of high dose steroids.  These act as chemo, and are mood altering steroids which cause panic, sweating, leg and joint pain, extreme aggression and hunger, and more.   He goes for constant needles to do blood work.  We've had hundreds upon hundreds of hospital visits and stays.

The list goes on and on, and seems as endless as his 3.5 years of treatment.

Luke is a little boy, who despite all his hard  hard times, is full of love,life, spunk, joy, faith and drive.  Luke shows us HOPE.

Luke has A.L.L--the MOST common type of childhood cancer.  We are often referred to as the 'lucky ones.'

Did any of that sound lucky?

There are other cancers with so little money and research put into them.  Leukemia, like Lukes, was untreatable 40 years ago.  So, in this sense, he is VERY lucky.

The Canadian Cancer Society uses only 3% of it's money raised towards childhood cancer.  Only 3%. We are told that 46 kids are diagnosed daily, and that 7 die each day.

Over the last three years, I have watched a lot of my friend's children suffer and die.  These kids are not numbers, they are not statistics.  These are sons and daughters.  Bryce, Hiba, Geerteta, Sajeed, baby Alexander, Ewralis, Landon...
I have friends in other hospitals searching for miracle cures, searching for a clinical trial that will finally work, searching for HOPE.

What we want in raising awareness, is for society to see our kids.  To see how harsh the existing treatments are.  To see how few new drugs have been approved for childhood cancer.  To see more than a bald head.  We need people to put the money where it will be used towards our kids, my kid, Luke.  These kids want to live, play, survive.  We need blood and plasma donations.  Money can be given to Childhood Cancer Canada, CHEO's pediatric oncology research department, St. Baldrick's Foundation, Ottawa's Candlelighter's Supprt Program.

For us, our strong and enduring faith has enable us to push through.  In the darkest times, through much pain and suffering, we remain hopeful.


We hold onto hope.  Hope that Luke will continue to be a lucky one.  Hope that researchers find cures four our dearest friends who have few options available.  We hope people will stand up with us for our kids who are fighting cancer--because we all know they can't fight it or beat it alone.

Thank you.





-----I am sorry that I don't know the correct spelling of the children who have passed----


Thursday, September 4, 2014

Homeschool, week one back at it!


 Oh my goodness, it's back to school!  My kids are not that enthusiastic to start school again.  Except my two year old, who thinks she's going somewhere, every single morning, when we yell at the other 4 to 'GET DRESSED, IT'S TIME FOR SCHOOOOOOOOOOOOOOOOOL."

So I know a lot of families do homeschooling differently, that's the whole point!  We always forget to order our books on time, so now they have their fancy amazing computerized Math program, but the other programs..are probably in the mail.....

They have had time to do creative writing in place of the Language Arts program we are waiting for.  Bible reading, in place of the the Bible curriculum, which also has readings. 
Apparently all the chewing on the head set for the French program means--we need to buy new headphones/speaker thingies.  Sigh.  Social Studies we have...and then there is the PLAY TIME--free time, home time...this a little snippet of an average day here....The first pic is of them playing board games, they spend hours making up games and playing board games too.


 Jacob is 4, he's a Ninja, but he is also Batman, the Green Lantern, the Green Ninja, and Spider man.  I am always Wonder Woman, or Bat Girl.  Sometimes I am Yarn Girl, or Dish Girl, or even Run Girl.  Jacob is J/K level..we do work, but nothing too drastic on paper, we learn a lot by books...like mammals give milk to their young, have fur or hair..and 'wear shoes.' um, ya, okay Jake.
 This is Gabriel, being the bad version of Uni Kitty!  He's always busy writing stories, making Lego creations, doing 'extra math' because he is smart and keen, and wants to get ahead of his sister --- ha!!! He also is constantly playing with our neighbours--who also have 5 and homeschool.  Yes, it's a club, lol.

 Here is mom.  I have little explanation, other than it's been over 11 years of doing this..and it's still fun, and tiring, and fun!
 Here is the big girl.  She is brilliant, creative, messy, helpful, and full of ideas.  She reads EVERYthing under the sun, can take care of four younger sibs, and is my best buddy.

Here is the main man, Mr. Lukey.  He's learning this year....He's behind a bit I admit, chemo fog and steroid interference.  He's reading a lower level than this teacher-mama would like, but he's very very smart in so many other ways.  I'm working hard to finish up his Grade One, so he can begin Grade Two.  He's loving to do just a little work, and lots of play in his days.  He so deserves to enjoy life. 

Oh, and Rebekah!  Dear sweet toddler...the one who shoves toilet paper down the sink drain, has accidents on the floor, who steals 'raw chicken fingers' off the counter when I'm making dinner, who shakes oats on the floor, crushes crackers while nakey, actually, she's always nakey...the terrible twos aren't that terrible.  Just really really really messy...and busy.

That's the first 3 days...only three days of school!  Tomorrow is a chemo day, and I bring Luke to Ottawa for his IV chemo.  The other kids will do all their work here with Nan, and Rebekah will do her best to tear the place apart.  Then we will be all crazy and impossible next week, as he gets his steroids starting tomorrow as well, they are 5 days of high dose, and then it takes about 3 days post, to clear his system.  It is usually a write off week..every month...

It's NOT easy, it's NEVER quiet, NEVER clean, and I'm beat.  I love it.  We all have choices, some things are choices at least.  I chose years ago to Homeschool, and there are days, every single day, that I wonder...how can I get them to 'real school.' lol...but....I do love it.  They can read a lot, they can play a lot, they can start when they please (has to be by 9 am, but can be sooner!), they can relax when they feel sick, and they can be  together, and with me.  They do chores, clean, help out, they help bake, harvest the garden.  Oh so much time together...oh gosh, sometime way too much time together....

Homeschooling during Luke's hardest times, was a real life saver.  Seriously. My other kids being mostly here, avoided a lot of infectious diseases that can really harm a ped oncology child.  Here's to another year of homeschooling!

Saturday, August 30, 2014

CAUTION--foul language.

You know that tingly feeling you get, you get all jumpy and antsy, and you wish you had gone sooner, hadn't waited too long, it may be too late, cause your gonna burst...and someone is in the way?

You...push them off the computer chair, and you sigh a sigh of relief as your fingers starting typing out all that has been pent up in stories in your head?! What were you thinking????

I've recently read a lady's blog, Momastary, which is amazing, and she write a post about how she's been watching a less that kid friendly Netflix show, and then one day while playing UNO with her two young kids, she lets out a 'UNO bithches!' and shocks herself and her kids, and her hubby, and probably a lot of her Christian followers.  I was like, oh my goodness, she said 'THAT!' I'm pretty sure I've never said 'THAT.' (not out loud or any thing).

 Well I've been feeling kind of jittery, and daddy has Luke, the Leukemia kid, out for his first camping night, since before diagnosis, nearly three years ago.  It's bringing up a lot of memories for me, and I'm remember that one and only family camping trip we took three summers ago, to the same site they are at tonight.  It sucked.  Luke was four, he was miserable, he was pale, cold, sick, grumpy, and apparently, he was coming down with Leukemia, which we had no clue.

So, I'm a little rattled.  September has a lot of important events for Childhood Cancer Awareness Month.  A Lot of events.  I feel overwhelmed by them, I feel like I want to support them all, but am so tired, and we have chemo still, steroids still, homeschooling is starting, I have a toddler, I have a lot to do.  September is a time when us moms rally and rant about gold gold gold, so we can have people hear our voices, see our kids, make a difference, find better cures.  It's really  really important.  But, so are all the other months.  And days.

I've got some close friends up on 4 North, our oncology ward.  It makes me feel sad and scared, guilty and angry.  It is nearly impossible to enjoy a day, a day we all deserve to enjoy, when there is so much burden and grief right..there...sitting right there...and we go on...I know how that feels first hand..and second hand. It aches.

Yes, it's a ramble.

Summer has pretty much come to an end, and for whatever reasons and excuses, the people I used to see, I didn't really see once.  I saw a couple, but not really the ones I used to chum with.  There are new situations, new friends (shhh, the ones who don't know me too well, still want to hang around!)--but the summer came and went, and I was pretty much...here.  As always.  Kinda a little pathetic, eh! I'm not sure what happened, or where I've gone.  Maybe I've retreated more into my ways and world, as we tend to do.

So with all that being said, and a lot I wont and can't say....tonight, I was stressed.  My one sick kid, isn't here, the other four weren't going to bed properly, and I may or may not have let fly a big old bad word.  A word even worse than the quote above, about UNO.  I was wearing jogging pant, and practicing walking in my thrift store heels, I was fed up, I found the last sip of Baileys, the 9 year old was crying so loud, I videoed him and threatened to post it on Facebook.  (judge me not, you never know when you may need these proofs of bad behaviour ).  And then out of my mouth came the big, bad, baddest word. The F word.  None of my kids heard it really, or understood its meaning (remember the other joys of homeschooling besides wearing sweat pants all day, is lack of school ground learning/swear- word learning), but none the less, I said it. Oh, and  I said it loud.

So. There you have it.  I didn't think I'd admit it, I thought I could go to sleep with all this on my chest, wake up and get ready for church, but no, I confess it all.  I'm a mess, I yell at my kids, I occasionally wear inappropriate bedtime foot wear, I can let a bad bad bad word fly, I can complain, and be thankful, and be human.  We can all be human, we can all laugh at ourselves, and we can all move on, and expect tomorrow to be a better day.  So, if you feel down about yourself, and you want a good laugh..picture this lost mama, looking for your youth, looking for her Bailey's, looking for peace in the storms, and making so many mistakes along the way.

Phew, glad I let that out, now I can hopefully sleep with a little more peace--if there is any room for ,me in 'my' bed, which apparently can conveniently sleep a multitude of children, who can sleep in any direction. Peace out.


Friday, August 29, 2014

Christ mas in August? Oh ya baby...bold

It's been ages since I've blogged.  Been too busy.  Busy being busy, busy with 5 kids.  Busy trying to get our lives back on track.  Busy being sad, angry, thankful, lonely, joyful..the usual.

Christmas.  Yes, I said Christmas.  Today, me and my older two were talking about the world.  The world 'we' live in here in Canada.  Where we have water, food, a house, heat, air conditioning, toys, games, clothes, toys, books, furniture, toys...etc.  I told them about the world, the rest of the world that doesn't even have any toys, or many clothes, hardly any home...often no food ...or water.  They listened, but they didn't just listen, I could tell, they felt.  They felt what we were discussing.  We then discussed Christmas.  The time of year when we get free passes to ask for any amount of any greedy things we want, and kind of expect to get it..the kids too, not just me.  Oh ya, and it IS the birth day of our Saviour, King, and Lord...but mostly, we wait for gifts, make lists...and for us grown ups..we spend a LOT of money.  Money we don't have, money we go in debt for, money we are currently thousand upon thousands in debt for.  We buy our kids toys, clothes, games, video games, candy.  We then later complain that they have too many toys, clothes, games, video games..and candy.  We pick up after them and wash hordes of laundry.  We store toys in bins upon bins, and curse every Lego we step on (and sometimes cut our feet open on).  We then go on to buy gifts for friends, in laws, grandparents, hospital staff, neighbours, pastors, and then some.  We buy, we make, we create, we buy crafts and food to create and make. We wrap, we stamp envelopes, print photos, send cards...and it goes on and on and on.  When we finally finish (and some of us start in August, to spread out the financial burden)--we feel 'it's not enough for so and so' so...we add more to that gift.

That 'gift' to me, is becoming a burden.  A big, dark, looming Christmas BURDEN.  I love Christmas.  The snow, the food, the family time, the tree, the lights, the joy, the birth of Christ.  I hate that I expect to 'get' stuff I need/want.  I hate that I feel the need to please the people I'm purchasing for.  I hate that I have to add and add and add and add to the gifts to make them ENOUGH.

ENOUGH.  My husband is totally going to know I've lost it, and I probably have, but it's still August, and I say ENOUGH.  (I did take my anxiety meds this morning, honest, I did).  I am NOT buy Christmas gifts this year.  Nope.  It isn't a punishment.  It's a freedom!  I wont disclose how much this single income, five kid, one with cancer, and homeschooling family is in debt, it's big, and it's ours, and it's not going to pay itself off.  I'm not a scrooge, I think the day can be lovelier without the hype of what you got, what you get.

I ain't buying no one nothing, so don't take it personally.  I'm planning on making some stuff with what I've got, or find...I'm going to try to save some money to pay off what we already owe.  I'm planning to spend SOME of what we'd spend (500-1000$) on a charity, for those who don't even have WATER or FOOD.  I'll offer time and talent where it's needed.  I'll give lists to family members who are so sweet and generous, and give my kids gifts.  I'll enjoy meals, help cook, and light festive lights.  I'll celebrate my Jesus and I'll enjoy the blessed day.

I just ain't buying no one, nothing, and I pray and hope my kids feel that I love them through this, not punish them...

One more game, one more toy, one more anything isn't nearly as precious as one more day together, making cookies and being God's children.

Here's to hoping hubby is on board, and this will be a GREAT holiday to look forward to.  I'm tired of dreading it, and hoping to spend it with those who we love.

Is this about cancer, or Luke?  Absolutely.  He's received more gifts, more coloring books, toys, and things than we can house here...he's loved them..but that passes...he's asked me more....to see people, and to see family and friends..that's what makes him feel loved.  That's what lasts.

God Bless, and God willing this Christmas will be the kind I love!