Last Call….Chemo Happy Hour is almost over :)

Soon to be..."Buddies in Baldness"

Soon to be…”Buddies in Baldness”

The end is near!!!

Only ONE week of radiation & chemotherapy to go for beautiful Miss Kayla and then it’s time to do some celebrating!  We’re awaiting doctors approval for her to travel so we can fulfill her trip through Children’s Wish Foundation and some other lovely adventures we’ve been planning.

And in an interesting twist, I ended my chemo today, too.  I got the call yesterday that my liver counts are too high for me to continue with chemo at this time.  Some additional testing is scheduled and they will monitor things even more closely.  It is their hope that I will be able to go back on again at some point, if we can get my liver stabilized. [Read more...]

Rockin’ the bald!

Mother Daughter Love!

Mother Daughter Love!

This week we had a Head Shave Party …. I realize that it seems wildly inappropriate to put Head Shave & Party in the same sentence, but that is exactly what we did.

Kayla’s hair suddenly started falling out in bunches so it became mandatory that she shave it – immediately!  And there was NO way I was going to let my “little girl” do this alone.

As always, I learned so much from this whole experience. [Read more...]

Chemo…the good, the bad & the ugly

Lady Deadpool update:

We are now firmly entrenched into Kayla’s treatment regime.  Every day:

  • 2:00   Anti-nausea drugs (Ondansetron)
  • 3:00   Chemo (Temodol)
  • 4:12    Radiation  (with weekends off)

An Oncology visit & bloodwork on Mondays and a visit to the Radiologist on Thursday.  Throw in some alternative treatments and that’s her week.   When you factor in my schedule and all of Tyler’s activities,  it’s no wonder I’m tired :)

She has also started a new semester back at school, which means a whole new course load, new teachers and classmates. Admittedly there are days of overwhelm where the fatigue, side effects and wear & tear of all her treatments take their toll but overall she is doing well – she is a marvel.

What’s up with Shannon?

Yes, those really are needles sticking out of my eyes!  Sometimes the cure seems stranger than the problem...

Yes, those really are needles sticking out of my eyes! Sometimes the cure seems stranger than the problem…

[Read more...]

Meet Lady Deadpool – Cancer Assassin!

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Kayla’s Lady Deadpool radiation mask

Kayla started the next phase of her cancer journey with the addition of Radiation Therapy (RT) and chemotherapy (Temozolomide) this Wed 23rd.  The first couple days were a bit rocky with nausea, fatigue and vomiting but we’ve been adjusting the protocol with some heavy duty anti-nausea drugs and it seemed to go better yesterday.

As I mentioned in a previous blog post (A peek behind the mask), Kayla was given the option to have her mask decorated.  She chose one of the X-Men characters, Lady Deadpool.  I didn’t have a clue who this was so I did a little research and was amazed at what a powerful character she chose.

Lady Deadpool has many special powers with the most intriguing to me being: [Read more...]

Bucket List #39 – Meet Oprah

oprah

Help us see Oprah – comment on our vid pls :)

I’ve always been a fan of Oprah and how she continually strives to make a difference in our world.  When I heard about the contest with Aly Pain to win a couple tickets to see Oprah in Calgary next week, I thought how wonderful it would be to see her with Kayla.

The contest involved doing a 2 minute video talking about a leader that has inspired you.  This is Kayla’s and my submission (Click on the link below)

http://www.youtube.com/watch?v=O7uGyzHWpac

Apparently part of the voting criteria is:

“Any moving comments about your video or sharing with purpose made may influence me! This is NOT a popularity contest. This is a contest to inspire – like Oprah.”

Now to say that this video is inspiring would be a real stretch considering Kayla and I threw this together in the dining room late the nite it was due – with our cat Smokey as the only director.

That said, if you could please throw us a comment  it may help us get a little closer to seeing the one and only Oprah – after all that is one of the incompletes on my Bucket List :-)

Carpe Diem!

A peek behind the mask…

Kayla’s radiation mask

Yesterday was another whirlwind day in a string of already surreal experiences.

First stop: a radiology consult where we learned more than I care to know about photons & protons & the like.  I have a whole new appreciation for Brainiacs after dealing with all these brilliant docs the past couple of months – makes CompSc seem downright mundane :)   We discussed a specific plan for Kayla which will include 6 weeks of daily radiation.

Next stop: Casting & molding Kayla’s head.  OK this was bizarre.  First she lays her head & shoulders in a substance that hardens and forms a mold to keep her upper body from moving.  Secondly, they contour this heavy, wet plastic mesh over her face and within 10 minutes it hardens to form a perfect mask.

They warn that this can cause claustrophobia, but in typical Kayla fashion she simply held my hand and championed thru the whole procedure.   [Read more...]

Rockin’ the New Year!

Wishing you abundant blessings in 2013!

As the clock counted down to 2013, I was bursting with joy as I hugged my sweet munchkins and ushered in a new year surrounded by love & merriment!

I always embrace the new year with a sense of expectancy….a clean slate. The dark moments of Q4 were left behind with a toast to new possibilities ahead.

Some dear friends gave us a beautiful gift of a week away after Christmas, in their gorgeous home in San Diego.  It has been exactly what the doctors ordered “Take a break from all this medical stuff and just relax”.  And relaaaax we have!  Wonderful food, amazing friends, incredible healing treatments and fabulous times connecting with each other. [Read more...]

Christmas Blessings!

Thank you for all your love & support!

What a beautiful Christmas we had!  Three days of gift openings & scrumptious dinners, surrounded by so much love at every turn.  You can see from this picture that the presents around our tree were stacked as high as we are.  So many treasures dropped off at our door & mailbox – there are clearly many Santas in our world.

Growing up my mom taught me the importance of handwritten thank you notes – something I have always endeavored to honor.  When she was on her own cancer journey, she had many new lessons for me to learn.  One was the need to carefully prioritize your time & keep self-care as paramount.   I remember Mom sharing how difficult it was to let go of personally acknowledging each gift & act of support, however it became imperative in order to preserve her energy and health. [Read more...]

Home for Christmas

Home.  Bliss.

This last month we spent more time in Alta Children’s Hospital (ACH) than we did at home and it feels SO good to be here.  As I decorated our home with the multitude of heavenly angels that friends so lovingly showered on Kayla in the hospital, we truly feel surrounded by love.  (Just how many is a ‘multitude’ you ask…literally huge garbage-sized bags full of angels arrived! I’m not kidding)

And we have a multitude of earthly angels too – every day I am awestruck by the outpouring of support that flows around us.   Our vast community lines our path with acts of kindness and love.  Not a day goes by without gorgeous, nutritious (and often gourmet!) food arriving to nourish our family, whether it’s spread out on a counter in ICU or at our comfy table at home. [Read more...]

She’s resting comfortably in ICU

It has been another long day at Children’s Hospital and today’s surgery, the third brain surgery in less than a month, went well.

Tonight, once again, Kayla is resting comfortably in ICU.  We are so looking forward to having Kayla home for Christmas, the surgeries all behind her.

Thank you again, everyone, for all your prayers and support.

(Shannon via Becky Shaw)