Sunday, September 13, 2015

To Only Know

I've taken the task of writing this blog to both inform, advocate, and share our journey through both cancer and Type One Diabetes. I've taken the time to be honest and kind while dealing in a world of raw emotion. I've taken the responsibility of fighting this ominous battle, whether I "feel like it" or not.

That being said, this past week evolved into a monster of a situation. 

To only know what cancer can do - is powerful 
To only know the sickness and challenges that flood those who walk cancer - is even more powerful.
To only know what you have in life - is the most powerful.

(Please excuse my face: I'm not photogenic, when I'm sick of course)

I was admitted last Wednesday (only two days after spending five in for inpatient chemo) for mucositis, vomiting, and dehydration. What was to be a two-day stay turned quickly into an easy seven. In my view, the mucositis was a hefty enough blow for me. My white counts and neutrophils (immune system) quickly began to tank. Frankly, this is how you do not want a sick stay to go. Within two days, the colitis took the spotlight. Between high fevers, urinary retention, and other various problems, the colitis was masked and showing up as a possible narcotic side effect. Due to the fevers, I was immediately put on antibiotics. This proved to be helpful once we found that my main issue was the colitis, due to the fact it was started by infection in the colon walls. In the end, they upped the antibiotics and finally got the pain in control. Though they wanted me to stay longer, I could not (mentally) bear to be there. They let me go home as long as I will hook myself up for IV antibiotics every day. (This is not so much of a problem since I love being my own nurse)

(My lovely set up for IV antibiotics. Looks cool- tastes terrible!)

So why expound on this lovely "story," "scenario," or "event?"

Here's my point: if everyone truly knew what they had, you would live life differently!

I didn't understand it before cancer. I don't expect anyone to get it. That is unless I can accurately portray the reality of a life-altering disease; if I can accurately assist you in seeing what life is like living every day in the shadow of death.

The colitis is worse than even I thought. In the words of my medical team, it was a "life-threatening complication of chemotherapy".
This is my reality. This is what I know.

I know you are smart. (I mean hey, you read this blog - big bonus points!) I know many of you have lived longer and have a better grip on what life is like.

However, the vast majority (if not everyone) do not know what it's like to live with metastatic Ewing's Sarcoma. To live with numerous side effects. To live on the edge.
After being confined to my room, the return to "normality" means so much more! Waking up in my own bed, breathing fresh air, and even appearing somewhat normal helps me realize the worth of the little things. With or without cancer life is hard. In my case, enjoying every minute of life helps me heal and shows me what is truly valuable.

I this blog to both enlighten and inspire.
This isn't supposed to be a sad post. . . just needed to be an enlightening one! ;)

(Jordyn and I lighting up P4. Nothing like a good bit of neon!)

Friday, August 28, 2015

A "Thank You" to You!

It has been almost five months since I was diagnosed. With the many events that have transpired during this time, it makes me feel like it has been much longer. Through thick and thin, there has always been a steady component of this journey that has not wavered- our support. I know I have used the word support in past entries, which makes me feel like "support" is a weak word. So let me break it down.

For myself, support is a multifaceted.
Whether a simple letter of encouragement or a helping gesture, the key to support is the love that fuels it. I feel that words are unfair when trying to thank the multitudes of people that have given in both time and resources. However, seeing that I am tied down in the hospital or recovering from the hospital- it seems that words will have to do. 


Though sometimes this may seem small, it is a direct access to the One who holds me in His hands. Thank you all for the countless times you have upheld my family and I up in prayer. I know there are friends and families all across the world that are constantly praying. Your prayers do not go unnoticed and are cherished. 

P4/ Second Home

I still don't understand how so many amazing people can be found in one place. I could easily sit down and write a statement describing the incredible, astonishing, and selfless love shown by each of them, however I may have to save that for a later post. It seems unfair that they are the unsung heroes to so many stories, when they are the frontline to beating cancer. I dream of one day being with them all, curing kids and being . . . well, awesome!! 

Thank you for the embarrassing/exciting Birthday surprise you al threw for me. You all are the best! :-) 


I have a one-gallon bag that holds at least 800-1000 letters. Cards that so many of you have taken the time to write. Cards that are infused with love, inspiration, and hope. Thank you all for the love you have sent my way. Thank you also for the many financial gifts of support, whether through letters or GoFundMe! Your kindness is truly humbling.

(It was nothing short of amazing getting to connect with my buddy before he heads back to college)

 Whether traveling from other states (Alabama, Michigan, South Carolina), cooking meals, helping with construction, calling to check on us, visiting at the hospital, or providing space- the selfless support that everyone has provided is such an encouragement. Thank you for giving your time and love to help us right now. You all have given so much to lighten the load. (You know who you are) :)

(Pre-Birthday Celebrations with family)

Every day, every hour, and every minute my family has been by my side. Whether good days or bad, they have never stopped helping and loving me. I owe so much to each one of them. Thank you to my Dad for supporting our family and grounding us in truth and love. Thank you to my Mom for constantly caring me- unconditionally. Thank you to Ben- my thinker, steady-head, and singing buddy! Thank you to Samuel for being our "Steadifier: someone who steadies things" (in many aspects of life). Thank you to Daniel for keeping things together and our lives in order. Thank you to Hannah, our treasured princess who constantly radiates love and beauty. 

(Chilling before heading out to this past 5Day chemo)

In the end, you all have touched my life through many different avenues.
Please know that we could not manage without you all!

Much Love

Tuesday, August 18, 2015


Blindsided: "to catch someone unprepared; to be attack from an unexpected position"

("It's not about what you have in life, but who you have in your lives that really matter")

We entered the UW Hospital this morning with an ample amount of anxiousness. The "firsts" of anything proves to be fairly unnerving when dealing in the realm of cancer. After a lovely run in with one of my favorite AFCH nurses (picture above), we entered our radiation consult room to prepare for my first radiation treatment.


It is a feeling that takes your breath away; that leaves one motionless and quiet. A feeling that makes one pinch themselves to confirm reality.

Today we found that the Ewing's has also spread to my lymph nodes. 

As I sit here and ponder how to adequately explain this, I find my mind racing. Cancer is very multi-faceted. Nothing is simple within this battlefield- everything is complex. I wish that this draining feeling would stop. That the barrage of new issues would cease. I just want the war to be over, the pain to be gone, and normality restored.

This  war is far from over. The demoralizing issues continue to come, whether I am prepared or not. These are moments where one either succumbs to the overwhelming situations, or turns the tables to see the glorious grace that is hidden beneath.  

So where does treatment go from here? 
Nothing changes. I am currently receiving the most amount of chemo that is used to take this cancer out. If I had one tumor- or ten, the chemotherapy treatment plan wouldn't change.
Radiation, however, is a different story.
Though the cancerous nodules in my lungs resolved, we will have to still radiate. The radiation field is quite large. Because this is a one time deal, the plan is to be as aggressive as possible. I will be receiving the maximum dosage allowed over the course of 40 radiation treatments. (2 months) Radiation treatment alone is not too terrible- the side effects are the nightmare. With the amount, field size, and potency of this radiation- the chances for lung scarring, throat issues, and other sizable problems is almost certain. Please pray that these would be minimized. I don't care to describe the pages of side effects, but when your doctor talks about "possible oxygen for life"- it leaves a mark. Trust me, I understand many of the side effects are rare. I just realize that the burning in my feet were also an "extremely rare" side effect. I seem to have a knack for falling victim to such side effects. 

I still feel breathless,
I still want this to be over,
I still want to wake up from this nightmare,
I still want a normal life- 
yet the Creator of this universe has chosen me for this war. He has chose me for this path, and He has equipped me with my incredible family, friends, and support.

Thank you for your love and prayers.

Much love,


(A very kind but random kid gave this to me. . . Love straight from her heart)

Sunday, August 16, 2015

Our Greatest Advocate: my Second Mom

At the beginning of this journey, our family was in shock. We struggled to grasp the new reality of cancer that we were facing. In our moment of need, our greatest advocate stepped up: my Aunt Jenny.

(First weekend after finding out about our new diagnosis)

Through thick and thin, she has stepped up for our family and given us a voice. I find it amazing that almost every time I login to Facebook, Aunt Jen is doing, saying, promoting, defending, advocating, loving, and showing support through social media.

(This is actually their REAL hair)

I find it interesting that when I need relief from treatment, the first place I want to be is at her house. We can relax, cry, talk, and be sheltered from this nightmare. She mothers and protects us while we are together - and when we are apart. I cannot even express enough what she means- and is to our family. Words seem weak when dealing in love!

The strength embedded in family is one of our greatest gifts

(Always a party with Aunt Jenny around!)

Thank you so much, Aunt Jenny, for everything you have done for me. I love you more than you could ever know.

Happiest of Birthdays to you! 

With all my love

Saturday, August 1, 2015


As the news has rapidly spread via social media, I am here to let everyone else in on the exciting results of my chest CT scans. 

All three tumors in my lungs are completely resolved!!!
With cancer, positive scan results are naturally approached with a tentative spirit. However, our Oncology team said they couldn't have asked for better news. This could not have come at a better time (not to mention it was the first round of scans)! Right now, we will take all the good news that is sent our way. With the diminishing of the lung tumors, this tells us two major developments:

First and foremost- the chemo is working!!
And secondly, this could mean no lung radiation. If the radiation field is focused on the lungs, there are many "not pretty, long-term" side effects.

Now let me see if I can bring you up to speed. 

(One of our favorites, Katy Z, after winning the "Daisy Award" in recognition of her incredible nursing skills, attitude, and all her awesomeness!)
I just finished five days of inpatient chemotherapy. 
This was round nine (9 out of 36). This round was actually better due to the fact that I can remember everything. My team revamped my nausea regimen- and tailored it to allow my brain to be less sedated.  

(Emily and I with my "Diabetes Care Package" as I headed out for my MRI scans)

This stay also brought on the new reality of radiation.
What we know right now is that we will be having roughly 6-8 weeks of radiation- 5 days a week. Honestly I am a bit nervous as the world of radiation brings with it a whole set of side effects and dangers. Yet again, it is time to smile and leave the "thinking it through" behind myself. 

I get this next week off, and with my feet on the mend I would like to try and enjoy it. 

Just going for a run sounds amazing. In fact, just going back to school and stressing over my nursing classes sounds even better! Perspective is a thought-provoking mind game. Before cancer, it was always something "so hard," "so annoying" . . . Now? Now- I would give anything for those days. 

I look forward to the day when I get to live without Ewing's . . . when I get to simply be a pediatric nurse . . . when I get to say, "I had Ewing's Sarcoma." 

(Lighting up P4! We hoped these lights would bring "rays of happiness" to others, as it did us)

Sunday, July 19, 2015

Side Effects and a Second Home

At the beginning of this journey I was walked through the many possible side effects that may occur throughout both my chemotherapy and radiation treatments. Though many side effects were labeled "rare," it seems that I have the uncanny ability to catch them. 

The worst this far is the severe chemo burning in my feet. 
 From what I was told, the chemo toxins settled into my feet, causing extremely painful burns and blisters. This quickly disabled me to the point that it was impossible for me to walk. 

As of this last week, I was hospitalized for both a double transfusion and IV pain control. My super awesome oncology team was able to contact pain/burn specialists that helped us revamp my pain medication regime. 

After three days in the hospital, I am beyond thankful to say that my feet are finally healing.

Between chemotherapy, both inpatient and outpatient, and increasingly common transfusions- I spend a lot of time in the hospital. However, unlike most people I love being in the hospital. Undoubtedly, it is mostly due to the fact I have the medical staff possible. Between my awesome nurses and crazy good Oncology team, I have found P4 to be my second home.
(P4=the Hematology (disease of the blood)/ Oncology (cancer) floor)

Whether I am constantly consulting with my Oncology team or calling my nurses at odd hours, the level of care is beyond words. I am so grateful for the opportunity to be at UW Children's. And also for the opportunity to know, confide, and heal with such a remarkable medical team!

(Never a dull moment when spending time with a fellow Type One) 

Sorry for the long delay, but I finally finished the "Why Hope" page. I hope that it is a blessing to you.

Thank you so much for your support! Due to the chemo burning, my next chemo session is not until next Monday. Please pray that my scans during that week will show the cancer is dying. These scans are incredibly important as they determine whether the treatment can continue.

Thursday, July 2, 2015

The "Why's?"

Why do I have Type One Diabetes?
Why three kids with Type One Diabetes?
Why cancer?
Why cancer at 19?
Why bone cancer?
Why metastasized bone cancer?
Why a "big-league" cancer?
Why chemotherapy?
Why so much chemotherapy?
Why all the horrendous side effects?
Why do pediatric cancers exist?
Why do kids get cancer?
Why are all my roommates on my floor like - three years old?
Why are all my hospital floor-mates bald like me? 
Why do they have to fear death?
Why do only a few "get" to live?
Why do some people never have any hardships?
Why my family? 
Why others families?
Why at all?
Why ...?
Why ...?
Why ...?
I could write the "Why's" for hours . . . my mind is exploding with them.

 Franky, after just talking to a few cancer survivors/fighters I can almost guarantee their minds are fogged by the same question. 

I sit here perplexed. 

Usually my posts are questions that I work through and break down to help both my readers and myself. However, the questions right now seem to outweigh the answers.

Though I may never get answers, I know one thing. I have an opportunity to use this dark place and shed some light.

 (My awesome nurses have given me a new nickname. Hope it sticks!)
Though cancer may plague my mind, I can rest in the safety of God's will. This was not an accident; God has a deliberate plan for this in my life. James 1:12 says, "Blessed is the man that endureth temptation: for when he is tried, he shall receive the crown of life, which the Lord hath promised to them that love him."

Though there are many cancer related realities I cannot control, I can control one thing . . .

what I do with them.

(Inpatient chemo with my princess by my side)

I am currently writing the "Why Hope" page, but have yet to finish it. Frankly, it's not easy.