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----


t-h-u-r-l-a-n-d said...

Greetings from Spain. As always, I find your story, and Luke's story, very inspiring. Today it inspired this, so I linked to your blog in it

Mandy Ulcar said...

Very moving, well worded and informative Sarada. Puts things in perspective for us.

Sarada said...

Thanks guys. I was asked to speak, and I figured I had to try and speak on behalf of the kids I know, in the area, and Luke..was trying to be specific and general. I know it is hard to hear all this stuff, and read it all the time, personally getting 'tired' of talking about it