Friday, April 26, 2013

Luke's video

Just adding Luke's video I made for his one year mark last Oct/ 2012.  Please share and raise awareness for Pediatric cancer.  

Tuesday, April 23, 2013

the times they are a changin'

I haven't been able to write in a while.  I mean, there is always time to write, especially because I love to write...having 5 kids doesn't keep me from writing, washing maybe, but not writing.  I've just had nothing to say.  Of course, nothing to say, means, I've had a lot to say, and not sure where to start, so instead, I festered over it. So today is the perfect day to sit down and write.  See, the baby has the flu,day 8?? and is vomiting, the cancer kid is on day 5 of steroids and is screaming at everyone..the kids are sliding down the slide onto one another, the house is a mess, the dinner is not made, and I'm 2 nights no sleep! It's perfect! 
I had a heavy heart today, as I was chatting (on line, who has real people anymore) with a fellow oncology mommy.  Her daughter is in "good shape" after her cancer treatment, but she has a very rare disorder caused by the cancer, lucky her, eh.  It has been weighing on my mind and heart as this family seeks help where no help has much ever been found...and I found myself looking back through her facebook photos.  I never met her family before cancer.  I look back and see a young, beautiful happy family.  They still are..and another baby is there (3)..but the sadness that now persists and then un knowns they live's just cruel.
I have been thinking how our lives here have been so changed since the day of diagnosis.  The innocence lost, the carefree days gone, and there is this sense of foreboding that lingers like deep dark gloom in the background.  I am trying to sweeten the smell, and uplift the mood, and paint every cloud with that perky silver lining.  But it is just not the same.  We are not the same family. I found a picture of the week before his DX:
It brings back so much.  The "before" pictures haunt and frighten me of the time when so much was taken away.  The woes and worries I had, were so different than those I have now.  The kids I knew had scraped knees, and a few issues, but they didn't die.  They didn't suffer for months, year..they didn't wonder...if....

Today here we are:
We're still a family, in fact, we are closer, and more loving, and more helpful, and more aware of the preciousness of it all.  Of life, of living, of fun, of it all.  I know the ache will be for a greater good.  I know the ache wont stay so painful.  It can and will be used for a better cause.  I know my boy has not lost his fight, and for this I am beyond grateful.  I am ecstatic.  But it does make you wonder....

How can a normal family be "that" family so quickly.  How can that family heal.  How can that family help others.  How can that family deal with what they have on their plate and not always grumble and whine and feel sorry for themselves or jealous of others. 
When I find out, I'll let you know.  In the mean time, I do my best.  We pray hard for the other families whose stories touch us.  We pray hard for Luke.  We ask for complete healing, and we try and get by. 

Better days are yet to come....

  • John 14:27

    Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

Friday, April 12, 2013


Sitting here feeling BLESSED!
Luke first off is doing pretty good.  His tummy has been upset a lot, and he's always feeling a bit sick there, not sure what's up with that, but it's a lot of bathroom trips for him. Ug.  He's amazing me anyway with his strength and happiness and spirit.  He's really the kind of kid that is strong strong willed, so anything that makes him mad, or upset, gets him going...but I think that is what makes him a great fighter.  He's growing up, and I am thankful for this.  I think we'll always be battling with things for and with Luke, but that's our job, so we will have to face it bravely.

I emailed the coordinators for the Toby Mac concert we're going to in the first week of May, and they gave us "meet and greet" passes as I requested!  He's a Christian singer who sings really fun and happy songs that Luke loves and loved to listen to during some pretty hard treatment days.  I would play him on my phone on youtube for Lukey.  He's really excited to meet him!  He deserves it!

We managed to finish collecting and tagging and organizing the hats for our 1000 Hats for cancer campaign.  We got a whopping 1103 hats from everybody!  I can NOT wait to get them shipped off down to Ecuador soon.  I hope the sweeties there will be happy to have some gifts from us up here, and I hope a little smile comes to their faces when they know we love them and care about their well being.

That's the scoop.  Not too many outings for Lukey, mostly just staying home and playing with friends when we can. 

What's to come come spring?  More hospital visits and more chemo, more of the same..and more rest for Luke to recover.  He is also attending camp Trillium at the end of May for a family camp weekend, where Rebekah will celebrate her first birthday! 

Monday, April 8, 2013

little boys and warriors

Today I see a warrior out my window.  He's got a big world around him, and lots of soldiers with him.  I see a little boy with a big fight in him.  I see a little boy who has always been my "strong willed child."  I see a little boy who's got a lot of man in him.  I see a little boy who wants to be a little boy, but who's been given the role of a hero.  I see a little boy who has lost a lot of innocence, but who has gained a lot of courage and strength.  I see Luke.  I thank God that he's so feisty, even though it drives me crazy.  I know that he has great things to do, amazing things to yet accomplish.  I pray that he'll be healed entirely, and that he will grow up to be a man.  A man of great integrity and a man of strong faith and strong convictions.  A man who can forgive and not judge, a man who can love deeply and play hard.  A man who can find happiness and joy in the small things, even when the world crumbles around him.  A man who can take his "bad luck" and use it for good.  I see Luke.
When life is so confusing, I think it's important to grab hold of what matters.  To live passionately for what you believe in and to do what you're called to do.  To love, to serve, to give, to accept, to run, to rest, to seek and to learn.  I see warriors all around me.  They don't all have the markings we'd expect to see, not on the outside, but everyone is fighting a battle of some sort.

He may have hair, he may not be living at the hospital, he may be playing outside, he may be wearing normal clothes..but that doesn't mean the fight is done for him.  He takes his chemos daily, and more..he takes his steroids.  He wears a mask around large crowds, he runs out of energy when out playing with friends.  He has tummy aches, and uses the bathroom WAY more often than any kid should.  He has aches and pains and  cravings and frustrations.  Cancer wreaks havoc and threatens to try and rob us.  We are fighting.  We are soldiers standing shoulder to shoulder.  Hold your head up Luke, and hold up your weapons, and we are fighting this battle with you always.  xo Mommy

Ephesians 6:10-18

New International Version (NIV)

The Armor of God

10 Finally, be strong in the Lord and in his mighty power. 11 Put on the full armor of God, so that you can take your stand against the devil’s schemes. 12 For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. 13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God.
18 And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.

Friday, April 5, 2013


Today was a sunny day, even though we woke up to a winter wonderland of April snow, the sun fought the clouds, and won victoriously! Yeah sun!
My kids had a busy homeschool day, where they tried their hardest to avoid school, but got it done none the less...I told them the new morning rule.  If you don't get dressed and start school by 9, no computer...after all these years of telling them, now they can tell themselves and be responsible.  We'll see what happens by 9 am come Monday morning!

Luke had a cranky/happy day.  I guess that's normal.  He had lots of attention as his Nan came and baby sat for an hour and a bit, and he got lots of computer time, and even played outside a bit.  I'm working on trying to hold and cuddle him more, as he wants a lot of snuggle time, after all, who doesn't?

The yard was full of kids this afternoon.  Running around the yard and fields that surround our house.  A yard full of screaming, and wet feet, battles and adventures.  It was pure joy to see them getting it out of their systems with the neighbourhood kids.  It was great to see them run like the wind and create new games, and get into outdoor mischief, which does NOT mess up the indoors! 

I feel really lucky that we bought this house.  It seems to be the perfect location for us.  We're in "town" but it's so country, that our whole back yard is surrounded by miles of farm fields.  We skii and play in the fields all winter, and spring and fall they are romping and stomping grounds for the kids and I.  Come summer, they're out of bounds as they are planted, and sprayed..yuck.  God certainly knew this old house and wonderful yard would be treasures for us. 

There are a lot of heavy thoughts weighing down my mind and heart, but I'm trying to push them away and fill my mind with happy thoughts and good things.  I'm angry and jealous, unforgiving and worried.  I'm afraid and hurt and disappointed. I'm petty and impatient and tired.  Very very very tired.  But in all this, I'll try and be more gentle with myself, to allow myself to get through the feelings and let them go...and not bottle them up and dwell.  Time heals all wounds...right?  It's one day at a time, and one foot in front of the other.

There are no good analogies or revelations in this post, and there are no words of "wisdom."  There are dishes to do, babies to console, laundry to fold, and snuggles to give!  It's a regular Friday night, and the Son shines on!

Thursday, April 4, 2013

tired.....but well

Luke had a great day at CHEO today, lots of people to play with, lots of hugs, and lots of love going around!  I was really proud of him.  He was happy!  I mean, except for the blood work part...
He teased Molly Penny, and put her on time out, he saw Brenda, hugged Pam and Anna.  He played with Robert and Jeff....and the list goes on!  I was thrilled to see Luke having a great time.  It made me kind of sad to think how sheltered he's had to be, considering how much he LOVES to be around people.  I think it's time to carefully get him out there more.  He's lonely for fun! 
His counts came back (after a bit of a confusion with the staff at CHEO--see Caringbridge post) quite high.  He'll probably be given more chemo to keep his counts at a lower level.  I felt kind of guilty as he waltzed around the MDU today, looking so good, and so he should still be looking really sick and bad...
We are blessed that he's doing so well.  I don't take this for granted all, for an instant.....

I know that we are in Maintenance now, and I think I kind of forgot to enjoy it, as I'm still "coming down" from the previous year+ of the heavy duty chemos, and inpatients etc.  I know the shock of it all will come more when it's all done, in 2015...slowly, we are finding our way.  I realize how fortunate Luke has been to not have been an inpatient since last May.  He's managed to avoid fevers and sickness, even when he was 0.0 for many many days and weeks, a true miracle!  He's managed to still avoid all the colds and flues that have circulated around this house.  More miracles.  He's doing so well.  I tell myself, "the other shoe wont drop, it wont wont."   I miss kneeling down on the pew at our old church, as our new one is not yet built..I need that quiet with the candles and the time to feel my prayers, and not just say them...I miss a lot of stuff, but I am realizing God's larger better plan.  We have become SO tight and close, the 7 of us.  The situation is hard, has been hard, continues to be hard...but we are sticking by one another.  There are days when everything is chaos and we still get through.  We celebrate quietly with one another, and live noisily with one another.  We are a family still teaching, still working, still cooking, still cleaning, still laughing, still crying, still struggling, and still praying.  This wont change, but the depth in which we do it, has changed.

I keep in touch with many many other childhood oncology families with much harder paths to forge...I know we are fortunate...I lie in bed and pray for so many kids and their families...I wish at times that my kid's "friends" were just normal kids, who's biggest issues were not the potential to relapse and more...and we do have friends like this..but we also have a lot of friends who are battling, and we are forever fighting along side them!!!  I can't even bring myself to tell Luke when his buddies are not doing well, he knows...too much.  He understands too much, for a five year old.

I am bringing Luke and all the kids to Gabriel's First Communion celebration this weekend, and am so excited.  This is a big deal for us.  It means a lot to celebrate it as a family, and I eagerly await Luke's turn when he turns 8...good things are to come, GREAT things in fact!

Tuesday, April 2, 2013

double posting..never a good sign

Some say ...."out with the old, in with the new."  Some don't.  I say, keep hold of the old and nostalgic relics and forget the new, as they are easily replicable.  At least this was the good advice of my mom, and I agree...
I go on cleaning rampages.  I can not handle cancer, or stress, anxieties, life, situations, and I clean.  I put items in bags, bags upon bags.  Big black garbage bags.  Bags full of toys, clothes, extra knick knacks, pots, cups, name, it's in there.  I do this a lot.  I'm not a shop-a-holic, and I definitely do NOT have spare money to buy stuff to just turn around and give it away.  So, as you shake your head in disbelief and wonder, where does one accumulate so much stuff, and give it away?  Well, we get a lot given to us, and I do go to stores, and I do just sort of go through our things a lot and give them away.  We all have baggage.  We have our minds and hearts and souls (and homes) full.  I can only allow so much to come in, before something has to go out.  This is my thing, my style, my quirk (of many).  I am not a huge gifty person, that is NOT my love language (if you've read the book--a great book..The 5 love languages).  I do appreciate gifts, and am so thankful for them, but I am not much of them...well, except a few shiny ones from my hubby...they are NOT in the big black garbage bags.
Why am I writing about all this...what is my problem..well, where should I begin.  This morning, I found a birthday card lying around.  An older card that has been circulating the house for a while never finding it's special "keepsake box"home.  FINALLY I picked it up and read it.  I figured, it will find it's box, once I see who it was given to.  With five kids, you need organization skills to survive, right?  The card was not inscribed to anyone, but I think it was meant for Jacob, as it had a #2 on it, and he just turned 3 on Friday, so this card has been out of a home for a year.  What caught my attention, was who it was from.  It was signed, from Grandpa Mike and Mary.  It made me stop, and just stare.  I wanted to cry, I tried, but ...still ...nothing.  I put the card in Jacob's box where it will sit and be a memory.  A memory of their grandpa gone way too soon.  Cancer is the worst enemy in our lives these days.  The day continued, as days tend to do, and the chaos and joy danced together in what we like to call "family."  There were many Alexander moments (see previous post of ramblings) and yet no one moved to Australia...yet
So today I learned to hold onto what matters, a small card with some meaningful words, words and memories that can not be redone, only re membered.  I let the bags fill with useless things that wont be missed, and keep my home filled with small simple reminders of what matters.  What matters is my chaos and joy, my family.  I can not just bag up all my woes and send them off to donation, but I can cut out some of the clutter that fogs my mind and trips up my feet and keeps me from seeing clearly what lies ahead of me. 

I say keep your faith strong, and keep your loved ones close.  Keep your hope pilot light lit, and keep your path clear.

It is with a heavy heart that tonight we learned that a friend, a child, a fellow oncology patient has relapsed.  There I sit, and the tears will not come.  Trying to let myself "feel" while caring for 5 young kids, is really impossible.  I ache, and I feel, but I can't let it happen, so I write.  I write to cry, I write to scream and I write to reach out. 

I wonder how kids can endure so much, and the treatments fail.  I am angry that the funding for children's cancer, is what...3-4 %?? I am furious.  What can I expect for Luke?  How can I remain so hopeful when all around us, kids are failed by the options in treatment,while being tortured by them at the same time.  It's nauseating.  I turn to my faith and wait for the tears.
Jeremiah 29:11-12 (New International Version)
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you.

It's been a ......

Woke up determined to be HAPPY!  There is snow in April, I pulled my back leaning over the sink, the baby is fussy, and I punished the kids from all screen time today...but it will NOT be a "terrible, horrible, no good, very bad day." (That's from one of our favourite books, Alexander and the terrible, horrible, no good, very bad day) No, because I woke up and decided it will be glorious, and glorious it shall be!

Small and beautiful victories can show themselves, and will...It's sunny despite the snow, my back will be fine, the baby will perk up, and there will be lots of games and schooling done today, and maybe the tuned out kids, will take naps instead of resting on the computer time.

I have a 5year old boy pretending to read a novel, pushing his little heavy and sleepy body into me as I type, full of life and love, full of hope and full of promise.  He's my sunshine today, despite the cold. I have a blonde haired fire cracker scooting around the house, undoing every tidy thing, and creating fun and messy areas to play in.  I have a juicy bundle of baby learning to stand for a second or two at a time, and pointing with delight at everything...the wonder that surrounds babies is amazing, as to them, everything is new and fresh...ready to be discovered.
I have a big girl who tops up her days with re reading Lord of the Rings, creating new crafts, biking around town, and helping me out so much with the little ones.  I have a quiet soulful brown eyed charmer, with a ferocious temper that bubbles up and yet he's the baby's muse all at once. 
I have a husband hard at work, keeping us afloat and more than that, loving us and caring for us, and coming home to spend time with his family because he wants to, not because he has to....I am blessed.
It is a good day, and at that, I don't think I'll move to Australia.

Monday, April 1, 2013

Easter ..and now what?

I feel like I should have some great post to write a post, but I don't.  I woke up feeling ...un inspired, so there it is.  I wonder so many times, if reading all the Facebook posts really is healthy.  It pretty much assures me that (with extreme exaggeration--and I had to google how to spell exaggeration--) that EVERYone in the whole wide world lives a perfectly happy, sunny,and vacationy life!  It's all so perfect, and "friends" are SUCH good friends, and all families are perfect, and all couples are happy, and no kids are a!  It's just me being silly..but at times, I long, big time for the days before Facebook, and my unhealthy addiction to peeking into other peoples lives..and fake-booking my way through my own...oh ya, Easter is the topic....

We had Easter, it wasn't good, it wasn't bad, it was okay.  I made it to church with my mom, and 3 kids, which is pretty successful for us.  I didn't bring Gabriel as he has been unwell a lot and picks up every flu from there..and Luke...I didn't want to take any chances. (We were also very blessed to have friends come by for a visit on Saturday, which TOTALLY perked up our spirits).  I missed my brother a lot on Easter, but feel privileged to spend holidays with my mom and dad!

We had a low key weekend with some yummy treats and some healthy foods, and did NOT go over board at all with the goodies...some candies from the bulk barn, and hid some eggs.  We've got too many kids to buy the big chocolate bunnies anymore!  

Luke  has been doing okay--he's got what another momcologist has called, the King-Tut syndrome...where he thinks, and acts like he's the MOST important person in the family.  He expects everything instantly, and acts quite spoiled, as I do believe we've spoiled him along the way of his cancer journey.  Poor guy.  He's got a lot to learn about re-integrating into the family and not being the sick kid. It could be worse, eh!

So, here is Monday, and I pray for silver linings on this wet spring day!