“somewhere over the rainbow”…counting the days until I return to my lakeside sanctuary

Another curve on our windy path.

We were so excited to have dear Kayla finally free – off her IV, no chemo, no surgeries – and heading off for a much needed break to the lake.  But alas it will not be sunshine rays, but radiation rays that I will receive over the next couple weeks.

I had an appointment with my oncologist the day before Kayla’s PICC line was to be removed & as we were to depart for summer vacation.  Sadly, he revealed that he felt some additional, more aggressive treatment was in order, including the possibility of both radiation therapy (RT) and IV chemo. [Read more...]

Our twice daily IV regime

It has been such a roller coaster.

After a month that gave us 2 unexpected surgeries and a new ‘normal’ of twice-a-day home IV, our visit with Kayla’s doctors this morning was a joyful occasion.  Her MRI is clear and blood work is normal – what a huge relief!   And the final bonus is that they agreed that her PICC* line can be removed next Thursday.

* PICC – Peripherally Inserted Central Catheter is inserted into the arm and the tip is internally advanced to rest by the heart to administer chemo or antibiotics.

This is great news for many reasons: [Read more...]

Kayla was finally released today.  We are exhausted but so grateful to be home.

They have confirmed one ‘bug’ and are awaiting results on additional cultures.  They have prescribed heavy-duty antibiotics and feel confident that she would be covered with running these through the Home IV.  I never imagined I would be learning so much about flushing lines, changing antibiotic bags, replacing tubing, PICC line occlusions and so on… nursing has NEVER been one of my aspirations but it’s worth it to have my girl home.

Looking forward to much needed rest.    Thank you for your prayers, support & love.

Contemplating…

Surrender can be a challenging quest.

I want a plan.  I want to know that all this really hard stuff has a storybook ending.  I want some happy-go-lucky moments in my teen’s life.  I want some pain-free days.

We sit here tonite, still in the hospital, with none of that.   It’s a long, dark road and I challenge my soul to rest into the unknown.  I know that serenity is only available through surrender & acceptance …. and the truth is sometimes that’s hard. [Read more...]

Beautiful Cover Girl! Kids Cancer Care newsletter

Day 4 post-surgery….May long weekend…and we’re still in the hospital.   The strain(s) of infection in Kayla’s head – “bugs” as they are referred to at ACH – have still not been identified.

We now have a whole new set of doctors on our team from Infectious diseases.  My ever-expanding medical vocabulary is now rich with terms for many types of infections and corresponding antibiotics…myacins & coccus’s & cephalosporins…  Ugh, It must be obvious that my eyes are glazing over with their jargon-rich updates – perhaps that’s why they talk to me about “bugs” & refer to the antibiotic combination as a “cocktail”.  Now that I can understand :-) [Read more...]

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...]