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. 

Prayers

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! :-) 

Letters

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.

Friends
(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) :)

Family
(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

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.

Blindsided

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,

Caleb



(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

Relief

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.

Sunday, June 21, 2015

Dealing with Death

Perhaps the title alone suggests, for many, an "untouchable area."

Yet here I am, and for the first time in my life I have come to the realization that I am not as immortal as I once felt. Yes, immortal is a strong word, yet it's how everybody seems to live. 
"Live like there's no tomorrow."

I entered this world of cancer only two months ago. It's a place of new feelings, realizations, and realities. Obviously, the chemo has worn my body down. On Monday I head in for round 6 - round 6 out of 36. That leaves a good 30 rounds to go, a bout of radiation, and multiple surgeries. Frankly, this doesn't depress/discourage me. If it takes these two terrible years to save my life, then I have no reason to complain. 

However, there is a much more luminous side to this disease than I have really allowed myself to realize. 

To be "straight up" with you all, where I am at in this fight is like this . . .

Ten people will enter this specific fight- and three will get to win. 

Get

Too many people (including myself before all this) assume that beating cancer is all about the size of the "fight in the dog," the "will to live," the "fight in the fighter."

It's not.

In the course of my coming out of sedation (2/3 chemos include being drugged so this is a frequent habit), I have learned a lot about my own cancer, and also cancer in general. The realization of what I am dealing with hasn't been easy, which is why I have written this post.

I keep writing even when I don't want to write. I write when I would love to curl up and deny everything that is happening. I write when reality is too painful and I'm ready to be done with it all. I write when I know that where I stand could help others - even the many who haven't and probably will never be in my position. So what is to be learned at this point in my journey?

Death is now real.

At any moment, it could be my time to go. In fact, statistically - that's the most likely. I totally get that if God doesn't plan for this cancer to take me, then all of my treatment will be my lifesaver! Just understand that our prayers may not be His plan. For me, that is what I'm having to process.

For you? 

You never know what you have until it's gone.

Don't take life for granted. I find it amazing how much my perspective has changed- and even now life in the doldrums seems precious.

Yet most importantly - know you have hope.

Hope that lies beyond this world- beyond this suffering and pain. I couldn't imagine facing these realities without such hope. That is what keeps me smiling. That is what keeps me fighting.

Hope is the realization that cancer can be beat; and an early death is only the doorstep to an eternal beginning!

(Stem Cell Harvesting and also a double red cell transfusion on Saturday. When I tested my blood sugar that was 4 needles in me at once- new personal record!)