dying young

This post is dedicated to a 7 year old girl who I visited in palliative care last week.

I havent done this for some time now, and quite honestly it was about time I stepped that far outside my comfort zone to return to 4E3 (Paediatric Oncology Unit). This used to be a regular thing for me, as sometimes I was called in to pray, visit or do a little Reiki. A bittersweet experience.

As much as I dreaded it, I was equally drawn to it - in fact running toward it - feeling an intensely strong connection to those young beautiful bald heads. It was fuel for the soul and poison at the same time ... ("poison" being the sadness of the situation).

This beautiful little girl is chemo resistant, and does not have much time so the family is celebrating all of the upcoming holidays with her so she can have part of the experience before she goes home.

I observed that she seems angry and frustrated, perhaps unconsolable.

I can only imagine what is going through her mind these days - is she scared, confused, sad, lonely, feeling cheated...?

At this point in time, there is no stuffy or prize that is going to comfort this child. Lets hope its Gods grace that finds her and puts her at peace.

Just when I thought the situation could not feel more forlorn - I learned that besides this little girl (and 2 year old Taylor), there is still another 3 children who just received the same news "its over".

The only thing left for the hospital to do is to keep them comfortable.

I have several friends in my life that have lost their children due to illness. While we hold these little ones in our thoughts, lets say a prayer for the parents too.

Im a solid believer in the power of prayer and attitude. This does not mean I believe this will override fate, but perhaps sometimes it can, especially if collectively the prayer is powerful?

I believe it helped my Kali, Natasia, Alexis, Mackenzie, Eli, Robert, Rachel, Drew (to name a few fragile cases) and now hopefully little Taylor (who's recent lumbar puncture resulted as "normal").

I'll say it again....

Our children in this economy and advances aught to be worrying about their marks in schools, doing their chores and not getting grounded... not their mortality.

Hidden Blessings

In my prior posts, I have managed to paint a sad, bleak picture about our personal story with Kali.

All true, .... however I neglected to mention the many blessings along the way.

It occurred to me the other day as I sat in an audience while my friend Carol talked about their battle with daughter Natasia... we have both experienced these blessings that have forever changed and enriched our lives. They made us better people. They made us want to inspire, share, love stronger, build character, develop courage and determination, work endlessly at giving back ... and then some. Our children saved us.

I'd like to share a few of the "perks" along the way.

First and foremost - it is the people and "true" friends who have touched our lives along the way, select family members who stepped up, and the prize winner being the kids we met (and sometimes their families).

In 2001, Kali was chosen as the Miracle Child for the Stollery. She was pulled out of hospital for an evening and the family was invited to the Snow Flake Gala, no cost to us. It was a magical evening away, and Kali felt like a princess in her little dress, instead of those striped pyjamas she had grown accustomed to. For us, it had been such a long time since we had an outing, and never one to that caliber.

Although each holiday seemed to end up in isolation, Santa came, the Easter Bunny came, Edmonton Eskimos, Oilers wives, mascots, Wayne Lee (illusionists), Natalie McMaster (violin in tow), and of course Beamer and Neil.

In fall 2001, Kali received her wish at Make-A Wish. She was now 3. She wished to pet a black and white dolphin and a crocodile (go figure...??), so Make-A-Wish kindly sent us to Florida where Kali got to do those things and so much more. Included was accommodations, food and a minivan at "Give Kids The World" (check that sometime... http://www.gktw.org/), Disney, and any attraction in the area at our fingertips. I have no words to describe that experience, but let me just say it was pretty much being in a fantasy for a week. Life changing.

Kids With Cancer Society and Make-A-Wish always thought of us when there was tickets to Oilers Games, Baseball, movie nights, concerts, or random entertainment and events - all donated from donors who just wanted to give.

Of course, soon enough, we ended up giving back. So glad we did.

In 2003, Hair Massacure started. So did working with media.

This provided more opportunity to meet local celebrities and high profile celebrities, as well as invitations to various events throughout the city. We attended a lot of fundraising events (still do), which fed into the ripple effect.

My friend Carol and I also started a support group for kIds With Cancer. Incredible honor to be so involved with fellow cancer families, and the kids.... what a gift.

All of these experiences were highly emotional for us, but so very enjoyable.

That fall we all held the Grey Cup, and hung with Eskies Goldie, Gizmo and Ed Hervey.

In 2004 my second oldest (Mandy) was diagnosed with a tumor on her kidney.

A few months after the complications of her surgery has dissipated, we were invited by Kids With Cancer to meet her TOP favourite celebrity in the world - World heavyweight campion Chris Benoit.

This was set up as a surprise for her. We spent several hours with Chris (who, for the record was a very nice man) in the Mayors office (Bill Smith at the time), we had a nice lunch and following that Chris flipped us ringside tix to the show. We kept our chairs with Chris Benoi's face on the seat. So cool.

Mandy needed that, particularly after several months of home care due to infection and her incision not closing.

Following that we had opportunity to bowl with P.O.D. and Blindside. Later that evening the girls attended their concert. Mandy even jumped into the mosh pit.

In the summer that year, Kali and Natasia were invited to go to Disney for a day through Dreams take Flight.

2006 Massacre provided us opportunity to work with CISN Country, and a lot more media. More opened doors. Bridget Ryan was our host that year (including our 2 years prior) and continued to be very involved with the event.

2007-2008, we worked with 6 radio stations (including CISN). Pepper and Dylan (from the Bounce) both pinked on air and we shaved them up on the HMV Stage.

Paul Brown pinked (a lot of hair...) on the Paul Brown Show and at the event I shaved his beard, arm pits and chest hair all televised. Too funny!

That year we had General - our pink pony who attended the event.

Larry, the Clodhopper guy came out for 2 years running and we waxed a heart off his chest. Bridget and I had the honors of yanking... what a thrill! He then fed everyone Clodhoppers.

In the fall of 07, Third Street beat became heavily involved with our event and our family.

I was asked to help organize two annual "Santas Kids" performances (benefiting Make-A-Wish). I selected some cancer kids (including our fam) and after 2 months of hip hop practice (please appreciate - all of us were GREEN at the time), we were thrown into the show as the opening act. Since then, Third Street Beat has performed for us at the Massacure. That experience resulted in my Kyrsti's love and incredible talent for dance.

2007-2010 Edmonton Rush supported our event by pinking out (on a televised event) then shaving at the Massacure. We attended Rush games, our event heavily promoted, and Kali Bear Weazie and myself) present in the crowds an on the field.

In 2008, the Edmonton Oil Kings all "pinked". Yes - the entire team.... at Stollery. We made a huge mess, but the experience was unforgettable and absolutely fun! Same deal, invitation to the games, Kali Bear present (and misbehaving..... tee hee). Following that 2009 - 2010 Edmonton Oilers involvement. HUGE media events around that.

In 2009, Kali and I were invited to attend a fundraiser in Vancouver (Skate for the Cure - Michael Cuccione Foundation). We are great friends with Michaels parents (God rest his soul), and so they flew us up and pampered us. Following that, we are invited to check out Michael's lab at the BC Childrens Hospital. I was inspired. Guess where that opportunity lead us - into our lab out here, where we could develop the same type of relationship with our head of research (the amazing Dr. Shairaz Basch).

In Jan 2008, Kali had opportunity to meet with Natalie McMaster again, where she admired her from the front row at her concert, later by the dressing room where she signed Kali's violin.

Also that year I had opportunity to speak at length with the original founder of Make-A-Wish (Linda) Her little boy Christopher was the inspiration behind the cause. What an honor. We spoke on a very personal level about her involvement with MAW today, her book (Little Bubble Gum Trooper), and how life has changed for her.

In 2009, we met CMA winner Jesse Farrel who kindly perfomed for us at our HM. I picked up Jesse and Jesse (her guitar player) at the airport and delivered them to Fantasyland Hotel, where I later hooked them up with our friend Shayne Chartrand (personal chef to the owners of WEM - Germesians).

Shayne was titled the Iron Chef of Canada and now creates for the fantasy Grill at WEM. Shayne treated them to a 5 star meal. On that note, Shayne invited one of my Wish families and our family to a 5 course meal, where Kyrsti, Kali, and the wish kid were invited into his kitchen to cook with him. That experience lead us to do a piece on Global where we treated another of my wish kids to an afternoon in the kitchen with Shayne. It was a hit on TV with much viewer feedback.

Back to Jesse - she is amazing by the way. Great person, great performer. Huge heart.

The following year (09), Quanteisha performed an outstanding performance at HM. Quanteisha is a young local artist who's popularity is growing rapidly across the country. We enjoy hearing both of them frequently on the radio.

In 09, we also had another opportunity to attend the Snowflake Gala. It was very different from the first time, as we were not shellshocked with a sick child in tow. A secret donor provided us the tickets, and to top it off - a gift card that helped us slip into some dressier clothes (which we were lacking) appropriate for this type of occasion. It was like winning the lottery.

For HM that year Patty O'Neil - The Home Improvement Guy on Breakfast TV shaved his mustache for the first time in history. This televised, but prior to that Bridget, Paddy and I did a funny skit commercial where I shopped for hedge trimmers to "speed the process" of the headshave (and Paddy's shave). We winged it and it was funny.

Then we (Meagan and I) pinked Mike McGuire on air with our head of research Dr. Basch. More mess, more chaos, more fun!

Oh, here's something big - CISN Country has provided incentive school concerts for Hair Massacure for the last 3 years. These concerts are high end, up close and personal. For 3 consecutive years the CMA artists we met were Johnny Reid, Emerson Drive, and Doc Walker. These 3 acts pro-bono'd this for the cause. Johnny Reid signed autograph for EVERY child, and was VERY nice to talk to. Doc Walker high fived every child. Of course, we had interaction with all 3 acts, which was super sweet.

Later 09, I was awarded Woman of Distinction. This summer Kyrsti was nominated as Young Woman of Distinction. We wore our Snowflake Gala clothes, and with among close friends and Stollery / Make-A-Wish peeps. (This is where Tammy told her famous "feeding roadkill to in-laws story...)

Last year, I also had the privilege of working with Snooky (part owner of Manic Panic) - manufacturer of Kali Pink on a personal level. She was going through breast cancer treatment, and I was inspired so much by her attitude and strength.

On the weekend Kali and I spoke with Ed Stelmach for a spell, then re- connected with our good friend Kent Wong (Founder of Edmonton Magic Club, renowned magician of Western Canada, friend and college of Chris Angel). Kent has kindly performed for HM a number of years now, supported a rush wish I was working on by providing a little boy with a high end magic show for him and his friends. Later we were invited to a Magic show with some of the top magicians in North America performed. Going back stage was neat, as we mingled and enjoyed hearing very interesting Chris Angel stories.

There are many more to tell... but I think I'll just leave it at the Magic part as it's so fitting for this post.

Folks have asked, "would you ever go back and do it again?".

Part of me would say "yes - in a heartbeat." (knowing what I know now, and how our lives have been enriched).

The other part says "not on your life would I ever allow my child and our family to suffer like that again."

Good thing I dont have to choose.

Cause for Celebration

Today we attended a celebration for the Dizak Family at Sherwood Park's Festival Place.

Passionate, ethical, spiritual, unselfish, knowledgeable .... remarkable and I'm honored to know them.

Todays celebration recognized Natasia's journey, Carols journey, the family's journey - but honoured those that supported. The family took care of the cost and treated 130 friends and family to a day of outstanding entertainment, followed by a meal at Sherwood Park (Festival Place). In attendance amoung 130 was Ed Stelmach, Kent Wong, Shumka Dancers, country music artists, Make-A-Wish peeps and Kids With Cancer.

I met my friend Carol Dizak in 2001 at the Cross Cancer Clinic. Her 2 year old daughter Natasia had just started her chemo, was clearly on steroids and had the "look". I am referring to a particular look characteristic of Leukaemia treatment, one that you never forget and are never wrong about.

My introduction to Carol was "Decadron face - how long has she had Leukemia?" Instant connection, instead friends.

At the time Kali was now 3 and had endured the first of three years of chemo. Kali and Natasia hit it off too and we all became instant friends.

In 2003, when we kicked off our first Hair Massacre at Canada Post, Carol and Dave brought Natasia to our event. I cant tell you how much that meant to us to have a fellow cancer family there cheering us on. The following year, the Dizaks kicked off their first of 7 "Small and Mighty" Celebrations (fundraiser for Kids With Cancer and Make-A-Wish). Needless to say, we attended and since we have always attended each others events.

Carol and I decided to run a support group together in 04 (Families Helping Families) that would compliments efforts of Kids With Cancer Society.

We did this for 2 years - one Sunday per month. We took this rather seriously and with both of us thinking 'big", it was a pretty sweet group we started with entertainment, pizza, motivational speakers, volunteers (to do crafts with the kids), Shriners, and sharing circles. We worked harmoniously with each other, loving every minute of our time together, thinking like minded and each filled with passion to help the kids. I miss those days.

Carol puts on quite an event (Small and Mighty) with the Mayor, our Premier, high end magicians, singers, DJ dances, fun themes, Nurses and Oncologists, Ukrainian dinners, March of Champions (cancer kids), silent auctions and more.

Carol put her heart and soul into these yearly events, and eventually fell victim to the very disease that consumed her daughter - cancer.

I fully understand how consuming an event can be. It really does rob your health, but for Carol it eventually stopped her from creating the type of chaos she so loved. Carol is officially retired from fundraising, and this was part of todays celebration as well - to honor her with Natasia.

I'm just gonna see how long Carol is able to stay away. Its just not that easy to walk from something that tugs at one's heart.

Both of our daughters are beautiful young ladies who have grown up into this unique world of fundraising, awareness campaigns, meeting celebrities, delivering speeches, media, events....

two of the shyest, sweetest, most humble girls you'll ever meet.

Who would have thought..... 10 years ago.......

Women's Day Out

Today I was invited to speak at a "Womans Day Out" convention in St. Albert.

Bridget Ryan and I were the chosen guest speakers. Regretfully I did not have opportunity to hear B, but Im sure it was insightful and most entertaining.

Typically the way I role with these kind of things is to focus on my shpeal just prior to, and then shoot from the hip while its fresh in my mind.

I warn my audience of my challenges with bouncing around and politely ask them to try to keep up. It usually works out for me. If I create confusion, I know I can rely on humor in a pinch to get me back.

My 4 wonderful daughters asked to come to support me.

My initial thoughts were that they were coming to bail me in the event I were to share a certain "roadkill for supper" story or go off track so far that I could never recover.

Well... I DID share the story about feeding roadkill to my in-laws, and I did say dumb and a few times, shmuck once, but refrained from the word pooh (or anything worse) and the best part is that Meagan and Kali didnt shrink in their seats.

Overall I stayed on track, kinda... and I think I was able to get my point through. That point was through telling my "story", I was able to prompt reflection about self reflection, self empowerment and appreciation for life. Profound for a girl that says pooh.

I recall the days when I was trying so hard for my brownbelt (this was 15 years ago). My Sensei said to me that I had all of the moves nailed - it was my confidence that lacked. Attitude is everything. Back in the day I was very shy, not a candidate to be at the front of any audience.

I desperately wanted to teach class, so I made an "on the spot" decision to change.

Who would have thought where that moment would have taken me.

Several years of teaching karate, projecting my voice, looking at the people ...... I still trip up over myself. Ha!

So thats what I'll leave you with today.... standing in front of groups, whether it be teaching, training, or speaking - I can always rely on this.... a warped sense of humor, creativity, and prayer.

Ronald McDonald House

I'm most pleased to announce the recent inclusion of Ronald McDonald House as a recipient of our proceeds for 2011.

Hair Massacure's mandate is "Supporting Children with Life Threatening Illnesses". RMH is a perfect fit as 80% of its guests are childhood cancer patients. Following that, organ transplant, and a lengthy list of afflictions that place children at risk who need a place to stay while in treatment.

8 Years ago, my niece was born premature (runs in the fam) and my sister who lives out of town was invited to stay there. It was my first introduction to this facility. My impression was "wow", because it was so much more than accommodations - it was a warm, inviting environment that encourages families to unite, connect and support each other.

Speaking from experience, I fully appreciate how costly dealing with a sick child is. I can't imagine leaving my home, my town, to put my child through treatment. The house does a fantastic job of supporting families through this process. I'm most excited to start working with them, as well as meeting the new families that come through.

900 families came through last year in Edmonton. Thankfully we have a Red Deer Massacure too, as we have a new RMH going up there as well.

In January / February, please proudly purchase paper Kali Bears at McDonalds restaurants. Each 1$ bear will go to support the house, and this adds up. Our hope is to help raise 100,000 for both houses without impacting regular funding for Stollery (our lab) and Make-A-Wish Northern Alberta.

We grow, we help more. This is what is all about folks.

Loosing battles

I am dedicating this post to a 2 year old girl who is loosing her battle with cancer. Let me correct that statement... is no longer responding to conventional treatment.

I believe in miracles (as I've witnessed a few myself), and so I withhold this belief until proven otherwise. This is the doctor's theory - "loosing her battle", so this was the opening line Ive chosen to prove a point - the fat lady hasn't sung.

This troubles me in so many ways and on so many levels.

My first point, Ive said it a hundred times.... children of this age need to worry about superficial things like "where did I put Elmo", or "why am in the time out chair", and "why do I HAVE to eat vegetables". Certainly not "what does dying mean, what does it feel like and why am I doing it?". I'm sick about it.

Secondly, Taylors story has been televised and is all over Facebook. This is very good to educate the public about a tragic situation of this nature (I get it, as Kali's story has been splattered too for the last 9 years). The not-so-good part is the other Taylors out there (and believe me, there are quite a number of them) who will slip away quietly with no prayers, no gifts, no wishes, and no recognition for their short life.

It makes me sad for the other children who have had no support system, not even parents that had the courage to stick with them to the end, holding their fragile frightened little bodies. Instead they ditched and let the nurses and fellow cancer parents witness the last breaths of their childs life. I'm gonna step out on a limb here and shout out "Shame on them!".

Any parent that ditches their child to nurse their own weaknesses, fears, addictions, inadequacies and freedoms needs to experience karma ten fold, and is no friend of mine.

I applaud Taylors parents, family, and friends for scrambling to make things better for her. This warms my heart.

Taylor has touched many hearts, and will receive many prayers (including ours). While we pray for her, we must also pray for the others.

Last... how many times do we have to say this - I hate cancer! Won't you just go away already?

I am very proud to announce that this year the lab we are funding at Stollery is including Paediatric Leukaemia. Yay! I have regular contact with the wonderful Dr. Baksh, and will have opportunity to take out planning committee to the lab and see his work. We HAVE to make this go away.

Last night we buried my uncle. Cancer. :( He was a remarkable man. About every 3 seconds we are burying someones uncle, aunt, mom, gramma, father, brother, friend, child.....

I just dont understand the injustice of why good people, children, are made to suffer while others who disregard life may escape crippling pain and circumstance.

I'm sad and I'm frustrated.

As I mentioned about miracles, I hope there is one for Taylor.

I hope there is one for every child who's life is in jeopardy - whether it be cancer, neglect, organ transplant, diabetes, abuse, and so forth.

We need to try to save them.... all of them.

Please check out this great blog for Taylor http://landonmindytaylor.blogspot.com/

HM Promotional Video

I am pleased to say that my vision for a professional interview / video became a reality. :)

Ignition Media has been very good to us over the years.

In 2008, our HM commercial was created

(which is located on our Home page - hairmassacure.com), and our logo (which I had drawn about a million times on a napkin before releasing my final version).

Ignition Media recorded video interview from our family and two others speaking about personal experiences and our involvement with the Massacure. Ours was taken outside in a park, which was good for F.R.E.D as he needed to run off some energy before sitting still for the shoot.

The 2 other families involved were the Kinahan family (beneficiaries of Stollery / Oncology, Make-A-Wish Northern Alberta, and Ronald McDonald House). This family has been involved with HM for a few years now. The boys pink and shave and may I say - they are a HOOT! Its impossible to tell which one fought cancer, and this is clear evidence that treatment was effective!

The second family is the Caza family. I have spoken of this family a few times in my blog, primarily about my dear friend Jaime (who wears the hat of friend, sponsor, wish mom, and now volunteer captain). This family participates and volunteer for HM, and is beneficiaries of Stollery and Make-A-Wish.

The shoot took place at McDonalds Corporate Regional Office (Jaime's work). We were fed and then chaos hit like a ton of bricks -ha! - but done get me wrong - we enjoyed every minute!

The kids were most entertaining!

I am so excited to see how these interviews turn out. Once the editing is complete, the interview will be attached to the slideshow Kyrsti and I worked on this summer.

Things are falling into place....

Stollery / Sobeys / Pat

Today I had a meeting with Collin Parker at Sobeys corporate office to discuss their participation in carrying our Kali Pink.

They agreed to remain involved, however no magic solution for the system of distribution and management unfortunately. Still will involve a great deal of follow up, checking in, and frequent visits (more so on Collins Part) to maintain stock, and ensure its visible for our consumers.

Stollery meeting was lengthy but good. Lots to do. Pledge packages (update AND find new sponsor to donate them), finding yet another part time assistant (who, what, when, how....),

and sponsorship levels. Yikes!

Last meeting with my friend Pat this evening (God love her for still talking to me after the many crank calls this January). Pat is another newly acquired sounding board that I bounce ideas off, she is also our registration gal who books your shave time at the mall.

We have both named our brain tumors (from our prosthesis's - cell phones).

I take my girls to meetings sometimes so they stay in the loop - its fun. :)

I guess I love the choas... kinda.

Here we go....

Hair Massacure has officially kicked off for its planning for 2011.

In my last blog, I wrote about various plaguing health issues that interrupted
my ability to perform "normally" (that would be Tammy's normal, not normal normal).
Still working on those, but with fingers crossed I am happy to announce that I am finally off the couch. After tying up my ankles with my blackbelt and hanging from the banister, leg pulling sessions (with kids taking shifts), I was able to relieve my back and am walking around again, so far pain free.
Still fatigued, but determination has stepped in. Its full on Massacure season, no time to think about uncooperative body parts. I've decided that my herbalists pride can go on the shelf (along with the coyote ear and eye of newt) and the colourful pretty spread of pharmaceuticals on my counter will have to be tolerated.
So...... as of Sept 1, HM suddenly became very busy with planning for 2011.
Video is nearly done with last minute tweaking - Kyrsti and I pooled our efforts this summer, working with thousands of photos to implement with our chosen song which will be attached to an interview with our fam, and 2 others affected by childhood critical illness.
Really hoping to expand the event into Northern Alberta, reach more schools, hockey teams, work places.

I also hope is to get more day to day support during the nuts months (Dec-March), so that management of the event will be a bit easier.

Nicki will be back with me this year, however if she calls me OLD one more time....

All seems to be coming together, with the glitches, worries and chaos.