Kayla’s new t-shirt :)…however we need to add “FOUR times” to the caption

Kayla came through her surgery, once again, with flying colors.  Now a seasoned veteran to brain surgery, she even skipped a step this time and didn’t even bother with a stop in ICU.  As I sat holding her hand in the post-surgical recovery unit, the attending RN leaned down and said “this one really is an all-star, isn’t she!”  OH YAH!

We went in praying it would be a hemotoma.  If they found infection, one possibility was removal of the infected bone flap.   That bone flap happens to be the skull that supports the structure of her head so removing it would be an unpleasant experience (!).

Bad news: they did find an infection

Great news: the infection was in very early stages.  [Read more...]

The amazing Kayla.

Yes…you read it right.  My sweet Kayla will be going in for another surgery tomorrow – May 15 at 11:30 am.

I mentioned in a previous post that there was a pooling occurring in the area where they removed that large tumor.   The neurosurgeon decided that based on the MRI and bloodwork that it would be best to go in and determine what is pooling.

The best scenario would be that they find it to be a cranial hemotoma (which can be drained) vs an infection of the bone (which creates additional complications).  Please add your prayers for Ms Kayla.

She will be kicking off the morning before we head to the hospital with an appearance on Breakfast Television (between 7:00-7:30 am) in her role as a High Hopes Coach for Kids Cancer Care.  She truly is an amazing young woman.

“Getting to the heart of it”
Tyler, Kayla & Shannon in the Heart Labyrinth

We just returned from two whole weeks away with NO doc appts, NO radiation or chemo and a delightful absence of cancer-related schedules…. Pure Bliss.   We had the best time just BEing together – as Tyler put it “doesn’t it feel SO good to just chill”.  Amen, Sweet Ty :)  Laughter, swimming, board games, sun, snuggles, great food, spiritual rejuvenation, loving friends & family was our focus.  Yum!

A special thank you to our dear friends, Jill & Nancy, for the gift of staying in your beautiful homes in Mexico and SanDiego…. what a blessing for us!  And thank you, Auntie Di for joining us – we LOVE you!

Admittedly taking two weeks away created quite a frenzy of appointments when we returned….it’s been a very busy week! And here’s the latest on our medical status: [Read more...]

Turns out Kayla’s been rocking the wigs from a very young age!

Oh how my life changed 16 years ago, @ 7:21 am, when I held my beautiful angel, Kayla, for the first time.  I remember being gobsmacked with the intensity of feeling – how is it humanly possible to experience such immense love?!!!

As Elizabeth Stone says – “The decision to have a child is to decide forever to have your heart go walking around outside your body“   SO true.

There have been no greater joys in my life than seeing my children grow up so beautifully.
There is no one I’d rather spend time with than my two precious munchkins.
And there is no greater pain than seeing my babies go through challenging times.
It certainly is the full package of raw wonder.

I’m so glad we were able to celebrate Kayla’s 16th birthday in such a wonderful way.  [Read more...]

Superheroes Catwoman & Zorro outwit Cancer!

IT’S OVER!!!

Lady Deadpool (aka the amazing Kayla Schewe) has completed her 6 week Radiation/Chemotherapy assignment with flying colors. Yahoo!!!

Over this past 6 weeks, we tried to make it a little more fun and had a ‘dress up day’ once a week.  This covered everything from Pajama Day, Mardi Gras, Hawaiian Day to Spandex (ya, I wisely had another friend drive her that day :0) [Read more...]

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...]

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...]

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…

[Read more...]

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...]

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!