beads of courage.

After spending a few years in different children's hospitals as an RN and an NP, I became aware of a program known as "beads of courage".  This organization began in 2005 as a way to encourage children and families during their journey with childhood cancer, cardiac surgery, and more recently time spent in the neonatal ICU.  Children are given beads to spell their names and then a specific bead for each IV, x-ray, chemo, surgery, etc. and over time they build something beautiful through a lot of pain.  Although this is intended for children... I decided that I really wanted to do this too, to tell a story, and to remember the details of this last year.  I was unable to order true "beads of courage" beads... so I searched through some beads I had from Ghana and some online and came up with this:

I like that it's a windy, sometimes uphill journey.  So just like any other child, I began with my name... then the story starts upward and counterclockwise.

January 2012:
Initial labs after the lump was detected (light blue IV bead)
IV and CT of my abdomen and pelvis (light blue & white bead with blue dots)
Labs to rule out infectious causes to the lymphadenopathy (light blue)
ECG and labs prior to surgical removal of one lymph node for study (red & light blue)

February 2012:
Lymph node biopsy *instead of surgery* with IV (light blue & skinny yellow bead)
Lung function testing, ECG, and ECHO prior to chemo (bright blue & red x2)
IV and PET scan for cancer staging (light blue & sky blue with white and dark blue details)
Labs, oncology clinic visit, and bone marrow aspiration (light blue, green, & cream colored with red and blue details)
Labs and MRI of hip (light blue & white with blue dots)

March 2012 - May 2012:
IV for port placement (light blue & clear)
Chemo 1 - 4 *each chemo:  labs (light blue), port access (brown), and chemo (yellow)*
PET scan with IV (light blue & sky blue with white and dark blue details)
Chemo 5 & 6 (light blue, brown, & yellow)

June 2012:
Lung function testing, ECG, and ECHO (bright blue & red x2)
Chemo 7 & 8 (light blue, brown, & yellow)
PET scan with IV (light blue & sky blue with white and dark blue details)

July - August 2012:
Chemo 9 - 12 (light blue, brown, & yellow)
PET scan with IV (light blue & sky blue with white and dark blue details)
Completion of treatment! (bright big yellow bead)

September 2012:
Labs, oncology clinic visit, ECG, and ECHO (light blue, green, & red x2)

October 2012:
IV and port removed (light blue & clear)

December 2012:
PET scan with IV (light blue & sky blue with white and dark blue details)
Oncology clinic visit (green)

March 2013:

PET scan with IV (light blue & sky blue with white and dark blue details)
ECG and ECHO (red x2)
Labs and oncology clinic visit (light blue &green)

Way more information that you ever wanted to know... but it helps me to make sense of everything.  I left very little slack in the string, just for scans and clinic visits every few months.  Thank you for all the great support during this journey.

Love,
Katy Jo

happy spring.

Hi friends and family,

All good news to report.  We are now 6 months post chemo and all clear.  My oncologist said my PET scan was "rock solid"... can't beat that.  I mentioned last time that I thought surely they would space my follow up to every 6 months maybe, but it looks like I will have a CT scan and check up in June and then September, and likely at that time we'll space to every 4 months.  It definitely beats every 2 weeks though.  I can definitely see that my energy is completely back to normal, which I only realize in hindsight.  

Since I last wrote, Erik and I have had many fun adventures.  In January Erik surprised me with a weekend vacation to sunny southern California.  We had a great visit with my Mom, playing tennis, walking on the beach, and of course whale watching.  

On March 24th, Erik and I celebrated our first anniversary back in Randolph, Vermont.  It was a beautiful and relaxing weekend, bookended with 10 hour train trips.  What a difference in the setting though... feet of snow banked everywhere (as compared to 50s and sunny that we were fortunate to have last year).  It couldn't have been better though.  We stayed with our dear friends at their bed and breakfast and even had a little party in our honor from our photographer.  We ventured outside of the town this time and met some very friendly cows too, that was definitely a highlight.

In the career arena... my travel position in the Peds ICU was cut short due to budget problems, but it opened the door perfectly to my new job in the Neonatal ICU right in the heart of the city.  I start at this position in early May, which gives great time to relax and enjoy early Spring.

In the spirit of doing things a little differently... Erik and I will embark on our honeymoon to Croatia this month.  Just a preview of what we hope to see...

Happy Tuesday!

happy happy new year.

Hi friends, 

I hope everyone has had a wonderful holiday season.  Erik and I are doing well and currently enjoying some college football after a great date night in South Philly.  I have very good news from my latest PET scan... everything is still looking good and I'm in remission 3 months after chemo ended.  I'll have another scan in March and a follow-up with my oncologist to decide how often I need further follow-up.  Something a little weird during my chemo treatments were these sporadic neurological symptoms with numbness and blurred vision so my oncologist recommended a brain MRI earlier this week to be sure we weren't missing anything.  Thankfully I can say today that that is all clear too... so we can go back to lovingly calling these symtoms "chemo brain".

In other news, I recently left my job as a pediatric nurse practitioner in Wilmington, Delaware to return to bedside nursing in a pediatric ICU in Philadelphia.  This was a long and thoughtful decision to leave a great crew of people who had supported me so well during this last year, but I believe, at least for this time in my life, that being an RN fits me best.  I look forward to starting this new job on Monday.

Erik and I have had some great adventures now that I can safely fly.  We went to Oklahoma to visit family and to Baton Rouge for a good friend's wedding.  We then went to Newport, RI to meet family for a delicious Thanksgiving holiday and to New York for New Years with more good friends.  We feel so grateful and so full.

It's been surreal to reflect on this last year... this time last year I had just identified the lump in my lower abdomen that would prompt the diagnosis of Hodgkin's Lymphoma in early February.  I wanted so badly to believe that this lump was nothing and that I was healthy, but in the end I'm grateful to have found such a great healthcare team to identify what was going on and treat it so effectively.  Erik and I were talking on New Years Eve about this last year and how we really do feel that it's one of the best years yet.  We have learned so much about each other, our community, and our faith, and how resilient they all can be.  Our goal for 2013 is to write something we are grateful for every day.  Each day has something, we just want to be good at finding it.  We are so thankful for everyone who has invested in our lives.  Below are some pictures of our recent adventures.

Jack and Erik enjoying an OU football victory!

A view I've missed!

Enjoying Erin and Kyle's wedding in Baton Rouge

Dear dear friends Erin and Shea

Ally and Mom in Newport, RI

Our first Christmas

Our cozy apartment

Hair update picture and showing off my friend Dylan

 Come visit us in Philadelphia!!!!

Love, Katy and Erik

post chemo fun.

Hi family and friends,

I have officially been free from chemo (& cancer) for 6 weeks and I'm very grateful to have that behind me.  I had a 5 week follow-up with my oncologist last Thursday and she assured me that my PET scan (to monitor for cancerous activity) is still clear and my ECHO (to evaluate heart function) is good too.  I have been cleared to have my chest port removed (scheduled for Monday Oct 1st!) and my next scan and appointment is 3 long months away.

In other news, before I went back to work in mid-September I was able to take a refreshing road trip with a good buddy to visit another good buddy in Mt. Pleasant, Michigan.  We drove 15 leisurely hours across Pennsylvania, Ohio, and Michigan to see her home town and then experience beautiful Lake Michigan.

Beautiful Sleepy Bear Dunes... quick to run down (30 seconds) but torture to climb back up (45 minutes)!

Me, Kristin, & Kristen

Erik and I have also made time to see The Boss... twice... in the last month or so.  First at Citizens Bank Park in Philadelphia and next at the Meadowlands in north Jersey.  Erik took the picture below right after he touched the guitar!

Last exciting news for this blog is that my sister Ally came to visit a few weeks ago too.  We had a great time celebrating the 225th birthday of the signing of the US Constitution (also Ally's bday), hiking in Fairmount Park, seeing Finding Nemo 3D, and browsing the Free Public Library.  Also with some good eats mixed in there.

Ally and me early in the morning.  Proof that my hair is growing... slowly but surely.

Carvings dated back to the early 80s... one tough tree.

For now I'm just working and settling into a "normal" life.  Erik and I are looking forward to some uneventful next few months.  Thank you for all your support and prayers over this last baseball season.

Love,
Katy Jo

12th AND FINAL inning. :)

Pure joy.

We are one day out from the 12th and final chemo treatment and I feel so good.  Usually this day is met with nausea and blahness, but with God's grace I feel great.  As we finished this last treatment our nurses presented me with a Certificate of Accomplishment and a very special bell ringing.  

Goofy grin for the bell ringing.

Action shot

Great great nurses

Up next:
PET scan Aug 27 for more follow-up
ECHO Sept 5 to complete the cardiac study I've been apart of throughout these treatments
Oncology appointment with Dr. Nasta Sept 20 (then once every 3 months)... and as long as my labs and tests are ok I can schedule to have my port removed.  :)

As far as celebrations go we will continue to take fun little weekend trips and welcome visits from friends anytime... then our big celebration will be our honeymoon next April in Croatia!

Thank you for more support than I could have ever asked for.  It's been quite an adventure and we couldn't have done it alone.

I've posted this video before... but I can't get over how true the words are so here it is again.

"Beautiful Things"
Gungor

All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

All around
Hope is springing up from this old ground
Out of chaos life is being found in You

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make me new, You are making me new
You make me new, You are making me new

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

Love,

katy

10th and 11th innings.

Hi friends,

This much appreciated leave of absence from work may be making me somewhat lazy... as you can tell by this combo inning post plus apartment pictures.  Everything has been going pretty well here.  Lots of good rest complimented with weekends away and great visitors.  In the last month Erik and I have welcomed 4 out-of-towners (including my mom) and traveled to Fire Island, Boston, and Ithaca to visit friends and family.  We have also had 2 successful innings with pretty tolerable side effects.  Right now I'm looking forward to another month of rest and marking the end of this season with inning 12 on August 16th.  I am so grateful to feel well and know that I am well.  I'm anticipating a few more tests following this last treatment:  a PET scan, ECHO, and pulmonary function testing to ensure everything is still ok, then the appointments and tests will space out and life may feel a little more normal.  Below are some pictures of our new apartment in West Philly.

Welcome to our new apartment.

View from near the front door of our "dining room" table and kitchen

Kitchen close up

Living room

Our funky stairs... soon to have a one of a kind Philly mural

Our upstairs bedroom

Beautiful exposed brick wall opposite our bed

The stairs begin right under the hanging bike

Loft living room

Phillies corner at the top of the staircase

1 more "inning" to go!

Thank you all for the incredible support you've shown us throughout this hopefully once in a lifetime baseball season.

Love, 

Katy

Extra note from my mom:

I have been thinking of the two most beautiful words in the English language.  They are: REMISSION and GRATITUDE.  I go over these words in my mind every day all day.                

Love,

Mom

9th inning.

Life according to Erik:

Baseball is the greatest game on Earth. The most significant, defining reason for its greatness is the one thing that makes baseball so unique.

There is no clock.

Baseball is a game whose cadence is set not by seconds and minutes, but by outs and innings. Three outs each side makes an inning; nine innings makes a game. It’s up to the players (and in some cases, Mother Nature) to decide how long the game will take.

And when it ends.

Katy, as it turns out, is pitching a masterpiece. Her chemo regimen began in spring training, and it will end on August 16. We know this because Katy’s first PET scan revealed a “complete metabolic response” (remission) and the second, undertaken last week, confirmed the result.

But as with any masterpiece, the pitcher will face challenges along the way. No game is completed without the threat of a game-changing hit by a scrappy opponent that refuses to accept defeat.

In our case, the confirming PET scan results have not obscured the fact that, every two weeks, Katy’s body is poisoned by a concoction of medicine designed to heal her. These bi-weekly medications have had a cumulative effect on her body. Fatigue, light-headedness, and nausea have been exacerbated by a vicious heat wave in Philadelphia that has made even her healthy husband feel the ill-effects.

The compounding effect of these treatments has taken its toll. Last week, we decided that the best remedy would be a leave of absence from Katy’s job. Her boss – an incredibly supportive, understanding woman – agreed that taking some time off was the right decision. For the next eight weeks, our primary focus will be on getting this beautiful woman healthy.

Both Katy and I continue to be amazed by the generosity of our friends and family. Your consistent love and support has sustained us through this difficult time. We are confident that God is working through you, and through us, in these challenging moments for a greater good that He will reveal in His time.

Nine innings in the book. Three to go.


In other news:

We have been so blessed with visits from friends and family.  Most recently Katie and Natalie from OKC came to Philadelphia to see some of the greatest fireworks in the country.  After quite an adventure we were able to enjoy a wonderful show.

Erik and I also just moved into our new apartment in West Philadelphia, we'll post pictures soon.

Thank you for continuing to support and care for us, we couldn't do it without you.

Love,
Katy and Erik