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 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 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 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!