one baseball season: 2013

Sunday, June 2, 2013

grateful.

Erik and I enjoyed a wonderful weekend with family and friends in Philadelphia celebrating our 1st year plus of marriage. This video is a compilation of photos and film of our wedding and many other adventures that was shown at our reception. Thank you to everyone who has blessed our lives.

Love,

Katy and Erik

"One baseball season" update:

Healthy and well at 10 months post chemo :) CT scan, labs, and check up in the next 2-3 weeks. At this point, check ups are every 3 months, but will space to every 4 months beginning in August (I believe)... then maybe every 6 months after that. Feeling good!

Monday, April 8, 2013

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

Tuesday, April 2, 2013

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!

Wednesday, January 2, 2013

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.