Saturday, July 16, 2016

Living in a Nightmare

You know those feelings you get when you wake up from a nightmare? 

The sweaty forehead- racing heart- and nauseating sensation that flood your body as you mentally try to grasp if the dream is real or not.

That's where I am right now.

The only difference is that the nightmare I am trying to wrap my mind around isn't a nightmare. It's a reality of the new normal. 

This past week, I was crushed to watch yet another beautiful soul be taken from this world far to early. His name was Jordan and he was four years old.

(Jordy and Ben tearing it up through the halls on P4)


Don't get me wrong, I don't mean "four" as in the stereotypical four year old who doesn't grasp much of the real world around him. Jordy was a contagious, joyful, loving, vibrant kid that illuminated life to anyone around him. From the day we met, I never once saw him slow down. No cancer, no chemotherapy, no IV poles, no "Slow Down, Jordy" ever derailed that guy from making the best out of his circumstances.

During Jordy's short time on earth, it amazes me how much he impacted all those around him. He stole my heart and the hearts of all that knew him. He will forever be loved and missed, and I cannot wait until the day when we are re-united in Heaven.

Losing friends to cancer is the most painful part of my nightmare. 

 I went from a normal person who rarely ever attended a funeral for anyone under the age of 60- to a cancer fighter who regularly watches children and friends lose their lives to cancer.

You see: chemotherapy is horrible, radiation burns, transplant is terrifying, and cancer hurts- but losing your closest friends over and over again is far more painful than a year of destroying my body.

Sure my lungs are scarred and my body is worn, but my heart is what has taken the hardest beating. 

Through this nightmare I've learned that what you always see on the outside isn't always true. On the surface I can smile, grow some hair, and fit in- the exterior is easy to fake. One can look amazing, but on the inside they can be breaking. 
Physical pain is temporary. Hairlessness is temporary. Cancer treatment is temporary.
Losing those you love . . . is lifelong. 

I've also learned that though life can get tough, there is always room to extend love and kindness to those around you. Many times we are completely oblivious to those hurting, because our life is to busy and "difficult". We have no idea of how greatly we could impact others just by caring.

This nightmare has taught me to cherish every moment in life. In one scan, cancer uprooted everything I ever knew and permanently exiled me from normal. Though I have finished treatment, I now get to wait for five years to "see if it worked". All it takes is one of my scans to show relapse and cancer gets to re-uproot my family. Don't waste your time crying over politics, chasing Pokemon, or freaking out about how much money you have to make.
Invest your time in those you love most. Time is the most valuable investment you can make.

Lastly, I know that nightmares do come to an end. You do wake up and realize that it was all a horrific dream. For myself, I will never leave this nightmare. There is no five year membership here, you're part of the club for life. 
My hope doesn't lie in how this life unravels. My hope doesn't lie in whether my cancer will be cured by all of my treatment. My hope lies in the fact that God has reserved a place for me in Heaven. A place where there is no more cancer, no more pain, and no more heartbreak. 

My nightmare will end in the glories of Heaven- right next to Jordy, SarahKait, and so many other friends!

Sunday, June 26, 2016

Packers, N.E.D., and Myrtle Beach

(Hanging out on the pier in Myrtle Beach, SC)

This past month has been crazy! Since the last post, I have been investing in my passion- Childhood Cancer. 

While speaking at the AFCH Radiothon, I was approached about speaking for the Green Bay Packer's head coach, Mike McCarthy. The McCarthy Family has a foundation that helps American Family Children's Hospital through fundraisers and financial involvement. I jumped at the opportunity and ended up being the guest speaker for the 2016 McCarthy Dinner and Golf Invitational. 

(My Family and I with the McCarthys)

The event included 40 former Packers players, Mike McCarthy and his family, and one of the Packer's announcers, Larry McCarren. We had a lovely evening talking to the McCarthys, chatting with the Packer players, and hanging out with a lot of awesome people! There were 700 guests and in one night they raised $440,000 for AFCH. I was very thankful for the opportunity to share our story, and in a small way give back to AFCH. 

If you would like to watch the speech, click here!

 (Coach was one of the most humble people I have ever met!) 

The night was great, but it helped remind me of what I have just finished. The endless days and nights in the hospital, radiation burns, chemotherapy, infections, fevers, transfusions, pain pumps... all of it. It helped me come back to the reality that although I am finally done with treatment, this is my new life. Those hardships have given me a perspective that is driving my passion to go into Pediatric Oncology. Being a Stage 4 Bone Cancer survivor can be a source of hope for those still fighting! 

Which brings me to my next bundle of news!

I am officially N.E.D.!

On the 16th, my Oncology Team let me know that my scans came back clear! Though this is the first of many many scans to come, I am thankful that I can finally say this. It has been a decent year of difficulty and these are the words that you fight for! Thank you to every one of you who has helped my family and I reach this point. Not only do these scans mark the path God has allowed for me, but it celebrates the incredible support system that has helped me get here! Much love to all of you! 

And finally, the reason it has taken me so long to post the above news. ;) 

This past week my family and I were able to escape to Myrtle Beach! This was our first vacation in over six years. Thanks to the onslaught of health issues, vacation quickly lost priority in my family's life. Every day I lived on the beach. I soaked up the sun and relished in the fact that only a year ago, I was living in a nightmare. I am so thankful for the time that we had as a family, and the time that we could spend enjoying the ocean! 

Thank you all for everything you have done, been, and given to my family and I this past year! Your kindness, love, and generosity have carried us through an incredibly difficult time. We are thankful to God for His grace, to my medical team for their care, and to you for your love and support! 

Much love to all! 

Thursday, May 12, 2016

From Friends to Family

(Though Ben objects, Emily is obviously our eldest sibling)

A little over a year ago I was thrown into a world I never wanted to enter. 
I lost connection with everything normal. 

I was deprived, devastated, and dying. 

I was thrown into the world of cancer.

(Katherine and I feasting on popsicles as she explained how my port worked)

Within minutes of being on P4, light began to shine through the darkness. Though I was still under sedation, the nurses quickly put their skills into motion. Whether explaining, comforting, or caring for my family and I, their commitment to their patients was obvious. Upon coming out of sedation, my first nurse, KatyZ, worked overtime to make sure I was comfortable. She never left the hospital that night until I was in a good place. 

Within the first week, I quickly fell in love with my new family. Their love was magnetic. It was surprising. I expected the "so-so", "typical", "awkward" nurses to eventually show up. Thankfully, I was disappointed. Not one nurse on that floor ever made me feel uncomfortable (even though I was obviously the "new kid on the block"). I was quickly brought into the family and treated like royalty.

(Never a dull moment with Jess- hence the bottle of Tea in her hand)

Throughout my year on P4, the level of love never wavered, as the level of care never slacked.  

On days that were depressing, Jess was there to crack jokes- play pranks- or have "Sing-offs". Realizing that though cancer had me down, it was only temporary.
On days that were painful, Emily was there to cheer me up with her "Oldest Sister" wisdom. She immediately became part of our family by gluing her face onto our family photo. 
On days I wouldn't eat, Katherine would cater to my demands and eat popsicles with me. Even though I'm pretty sure she wasn't hungry. 
On days that were mentally overwhelming, Jordyn was there to listen. Understanding that I didn't want people to act like they knew what I was going through, but rather just listen instead.
On days that were boring, Ashley would happily intrigue me with her adventurous tales of past trips she'd been on. Helping me look forward to a life beyond my cancer. 
On days I missed my pup, TexMeg would share photos of her dog. Then talk about home-made BBQ brisket. (She had an uncanny ability to make me hungry even when I was nauseated.) 

(Jordyn and I coloring her masks. We determined they were too gloomy for a Pediatric Floor)

You see, my nurses weren't there to put in their hours. They weren't there to make a paycheck. They weren't there for themselves- they were there for their patients. They taught me that being a nurse is much more than a job- it's a way of life.

(Ashley giving a few pointers on Nursing. You I'm practically an RN)

Nurses rarely get the credit they deserve. Honestly, I could write a book on all they have done for me. They have not only saved my life, but invested their own lives in mine. They stretched out their hearts knowing that at any given moment- this cancer has the ability to easily hurt them. 

During Nurses Appreciation Week, please remember to thank your nurses. Every nurse on P4, every nurse in American Family Children's Hospital, every nurse in the world- deserves our love, respect, and thanks. They have given so much of their own lives by daily investing in others. Saying "Thank You" is the least we can do.

(The most awesome HomeHealth Nurse in the World! Katie's skill with accessing my port is commendable. Her compassion for others is incredible!)

Saturday, May 7, 2016

The Promise

(The day we learned my tumor was Ewing's Sarcoma)

In the past year, my appreciation and respect for my mom has gone through the roof. This Mother's Day most people will run to the store, buy a Hallmark Mother's Day Card, and say the same-ish things they say every year. (At least that's what I did) 

However, right now I would like to take a moment and reflect on why my Mom means so much to me. As a verb, "mother" means "To bring up with care and affection." In this post, you will quickly see that my Mom has both lived that out - and blown the quaint definition out of the water . . . 

On April 14th, 2015, my Mom was with me when we received news of the cancerous mass in my shoulder. Within days, I was transferred to UW Children's to begin treatments for my cancer. At the beginning, every single admit seemed to reveal a new problem. Whether it was educating us on Ewing's Sarcoma, teaching us the rules of dealing with cancer, letting us know it was spreading, or helping us adapt to a world that every human dreads - I noticed one thing was consistent: My mom was always by my side.

Before Cancer uprooted our world, Mom had a great job. She worked at a daycare doing what she loved most - taking care of babies. (I assume that is because us four boys were such amazing kids that she had to keep working with little children!) She loved her job, loved investing in others, and loved being able to have some independence (seeing we are all older now). 

Then cancer hit. 

I'll never forget my mom promising me that she would never leave my side through all of treatment. 

She never broke that promise.

(Hanging out waiting at a Radiation Appointment)

Whether by my side as I vomited through endless nights,
Rushing me to the ER at 2 AM,
Unexpectedly heading to AFCH for transfusions,
Bringing me my slew of pills every few hours,
Traveling to P4 for treating an endless variety of chemotherapy side effects,
Driving me to radiation daily for months,
Holding my hand as I battled through transplant,
Listening to me try to explain the unexplainable pain as I watch those I loved die from cancer,
Understanding that though she couldn't feel my pain, she was there to help bear it,
Willing to go anywhere to get me anything that would help make treatment more bearable,
Loving me regardless of where I was . . .

Mom was always there

She wasn't there for the first month, the halfway, the end - She was always there.

This Mother's Day is like none other before.

The love that Mom has given me is unequalled, unbeatable, and almost impossible to adequately explain. 

Thank you Mom, for always loving, caring, and supporting me through this past year. Your actions speak louder than my words ever could!

I love you so much! 

Happy Mother's Day!!!

(My incredible parents - 4th of July)

Thursday, April 28, 2016

SuperHeroes- Redefined

(Meet Josie,  P4Princess- super talented artist- and UNO Card-Master.)

Today was National Superhero Day.

Right now in our culture, superheroes are a big deal. They usually have hidden powers and supernatural strengths! The Webster Dictionary describes them as, "a fictional hero having extraordinary or superhuman powers; an exceptionally skillful or successful person."

This describes every cancer kid I have met this past year. 
Whether three, eight, or sixteen years old, these kids continue to amaze me. What do I mean?

The most common misconception of cancer is that it is all extremely depressing, somber, and full of pain. 

However it is important to note this fact:

Cancer is like a coin. 
On one side, you have a terribly dark place. One filled with tears, horrible pain, and loss. 
On the opposite, you have strength, resilience, courage- and even laughter.

(Chemo poles by our sides, and Macy proved a point. You can still laugh and give "Paint-Covered High Fives", even if you don't "feel like it")

Through the most terrible of times, I still remember the days of chatting with the little superheroes that surrounded me on P4.

On days that each of us were receiving poison to kill the cancer, we were laughing and sharing ambitions, dreams, and goals.

Even when we were most sick, barely able to get out of our beds. We still could wink, wave, or smile from a distance and know that we were in this together.

(Stewart provided awesome days filled with conversations of our P4 experiences. I don't think we could ever run out of things to talk about.)

You see, when you have life stripped from you . . . you begin to place value on different things. 
You stop worrying about "what" you have, and start focusing on "who" you have.

That is the beauty of cancer- it gives you the eyes to see what you really have.

This past year has been the most difficult year of my life. However, I wouldn't have wanted it any other way.

The lessons, the friendships, the miracles, the losses, the pain, the complications- have molded me into the person I am today. 

Through this God has given me the opportunity to meet the real superheroes. 

These are the kids that hold my heart . . . these are the kind of kids I want to invest the rest of my life back into.

No matter the outcome of my cancer- I know for certain what Stage 4 Bone Cancer has taught me:

My life is awesome!

(Had the privilege of having the Wisconsin Lutheran Love Your Melon Team come and visit me for Superhero Day! This awesome group totally encapsulated the heart that Love Your Melon is built on!) 

Wednesday, April 20, 2016

When There is Nothing to Say: Part 3

How to Help When There is Nothing to Say

"These final thoughts didn't necessarily fit under what to say or what not to say, but I think there is some worthwhile information that might help you tangibly support a friend whose child has been diagnosed with cancer and possibly other long term illnesses. I present them in no specific order. 

Every child going through treatment for cancer should have an iPad. I know it sounds pretty crazy and so first-world, but I don't know how Kylie would have gotten through the boring days in the hospital without it. (Disclaimer: I do not work for Apple)

Texting was the best way to ensure a message got to us. In the hospital, our phones were always on silent to help her rest and we rarely picked up a call. We both probably still have unheard voicemails from last April. 

In the early days, we weren't very keen on surprise visits because Kylie's pain and sickness were extremely unpredictable. I'm sure that varies patient to patient, but we preferred a text first. 

Help with siblings. This falls under the action part of love, but it spoke volumes to us in the early stages of diagnosis and treatment. It was so hard to balance our need to be with Kylie with the needs of her sisters. Friends grabbed them and took them to dinner, movies, and sleepovers. It was a great relief to know they were not only provided for, but having fun as well. 

Most families going through treatment need some level of financial support or have a fear of fiscal unknown. If you can help, that takes an added pressure off. It doesn't seem like much, but a card with $20 in it makes you feel better when the rest of mail is bills. 

We were fortunate to have good insurance, but the costs that seemed to get very large were prescriptions and gas. If you prefer not to give cash, gas cards or gift cards to grocery stores with a pharmacy are particularly helpful. We also got a lot of restaurant gift cards, and they were wonderful to have on hand for our other children- who could use theme when we had long days at the hospital. 

There is a large community of support for children fighting cancer, and Kylie received things in the mail nearly every day. If you heart goes out to a cancer patient and you want to help, please understand you will most likely never receive a thank you. We are good Southerners and it went against every bit of manners we've been taught, but we were just too overwhelmed to send to send out thank you cards. 

We read everything- every note, letter, and comment on Caring Bridge, Facebook, and Instagram. I assure you that your words matter and comfort. Also, if you are letting kids send letters to a cancer patient, proof-read them first. Kylie got a couple from children who said things like, "It won't be so bad if you die because you'll be with Jesus." We knew they were sincerely hoping to comfort Kylie, but that was not what she needed to hear. We screened all her mail after that. 

I hope some of this has been helpful. I know these don't pertain to every family or patient as I can only speak to our situation. we had incredible support throughout her treatment and we are grateful for it. I pray ever family facing this long, terrible battle has friends to lean on. Some days, friendship and encouragement was the only way we made it through."

More blogposts and information can be found here. (

Tuesday, April 19, 2016

When There is Nothing to Say: Part 2

Part 2: What to Say When There is Nothing to Say

"As a victim of a poor memory, I remember only flashes of our first weeks in the hospital. Visits, conversations, tears, rooms, tests, scans- they all run together in my cloudy mind. There is, however, one event I recall with perfect clarity. 

He texted to ask if it was okay if he stopped in on his way home from work. I wasn't sure we needed a visitor, but Kylie agreed. Freshly diagnosed with Ewing's Sarcoma, we were in the pediatric cancer wing where Kylie had begun her first round of chemo. By the time he arrived, our patient was sleeping, and I got up to greet him quietly. I remember he put his backpack against the wall and opened his arms to hug me.

I am not a hugger . . .
 This is weird . . .
He's here for Kylie, not me . . . 
Do i hafta??? Why???
I'm okay, I don't need this . . .

Not a word was spoken and I promptly fell apart in his embrace. I cried like I had never cried in my life. He just held on for the ride. 

What my friend Steve gave me that day was the very essence of what to say when there is nothing to say.


Love is all there is. It can speak volumes without an audible syllable. It can be felt in a quiet room where words aren't welcome. It might be simplistic, but love is all that can break through the hard shell of pain and fear after a parent has heard the dreadful phrase, "your child has cancer." 

Let me say again, there are no magic words that instantly sooth, but here are some things that resonated with me when Kylie was first diagnosed:

  1. An expression of regret. "This really sucks" (or "stinks" for the less crass. but I assure you, it does suck!) 
  2. A profession of love and friendship. How do you say that? Um . . . "I love you." For those uncomfortable with the ever-personal "I," you can always lean on the family crutch for support and say, "We love you guys." 
  3. Presence. "I'm here." There are few positives in having a child with cancer, but one is that your calls rarely go to voicemail. Availability can be sensed. I knew very little in those traumatic first weeks, but I knew who was there for me, and I called on them when needed. 
  4. A promise of endurance. There is a long road ahead of the family. Like anything, many people with good intentions begin the fight full of fervor, but life gets in the way. No judgements here, I get that. A promise such as, "I am here today, tomorrow, and in six months," means a lot when given sincerely. 
  5. A specific offer of assistance. Sometimes, this isn't even verbal. If you see a need, meet it. 
  • We once came home to find a huge painted pot full of yellow flowers on our porch.
  • Sometimes our lawn just got mowed.
  • A woman who bakes incredible cookies would just stash dozens in our mailbox without a word
  • Friends organized meal calendars, ballet rides, and school carpools for our other daughters. 
This is the action side of love. Love does! Love molds unique talents into lavish gifts. Doing love doesn't have to be grandiose or expensive and is often best when anonymous.
    6.     An assurance of prayer and/or positive thoughts. To know that my little girl was on the forefront of people's minds was huge. Knowing that children included Kylie in their nightly bedtime prayers was humbling- especially when my prayers couldn't get past a groan and balled fist.

Nobody knows what to say to the parents of a child diagnosed with cancer. We didn't know what to say or what we wanted to hear- it was uncharted territory we'd rather not have explored. I assure you we were glad not to be traveling alone. If you have friends who find themselves on this heartbreaking voyage, I would urge you not to be afraid to approach them. Just step out in love, the right words will come. You might start with a silent hug. Even the bristliest of us cancer parents could us a hug from time to time."

More blogposts and information about Mark Myers can be found at here. (