This Too Shall Pass

(An awesome night of ice-skating with best friends. Thankful for great Christmas memories!)

I cannot be more thankful for the past two weeks of chemo-free bliss. Though you wouldn't think two weeks would make much difference, it has actually been a relief from the constant droll of the normal chemo schedule.

I would say this past holiday has been harder than I expected. When you face a disease that constantly overshadows your life, it seems extremely easy to let your mind reminisce on the past. Days that seemed hard then now look heavenly. As I have talked to fellow cancer-fighters, I have found that Christmas can be two-faced. On one side, you enjoy the incredible time with your loved ones. Yet in the back of your mind, you dread the thought that next year could easily be far worse.

With that in mind, I find that my best option is to press on. The end is drawing closer with every round of chemotherapy. My Stem Cell Transplant is quickly arriving, and I can finally let my mind dwell on the reality that I will soon be able to return to a "normal life." I don't think anyone that has not had a true relationship with cancer really understands how much cancer really takes away. It seems the general conception of chemotherapy is that it stinks - but you will get through it. 

I truly wish it was that easy . . .

(My ever so faithful pump, kindly filling me with cancer-killing drugs)

Seeing that it is now Monday, I will be heading to the hospital at 8:00 for the first day of a five-day stay.  After doing this every three weeks for the past nine months, I have actually mastered the art of surviving five days of chemo terror. 

Benadryl (25 mLs) = knock myself out . . .

When dealing with these drugs for so long, I have learned it is better to sleep through the nausea rather than brave it out. Being tough just leads to vomiting and extreme discomfort. (I feel sick just thinking about it!)

As I stated above, thankfully this too shall pass. 

For now, I have an amazingly strong and supportive family, a mind-blowing Oncology Team of doctors and favorite nurses, and faith in a God that never leaves my side.

Many people assume cancer-fighters would have reason to pull away from God. Yet the ones I have talked with all seem to have drawn closer to Him. When your only life-line is the One who entrusted you with such a disease, what else can you do but trust Him? He holds the the true hope and reason for our very existence. (If you want to know what this hope looks like- read my other post here!)

Though I may never understand the reason God gave this cancer to myself, fellow-cancer fighting friends, and those I don't even know- may never be revealed here on earth. However, I cannot imagine how much sweeter Heaven will be when we all reach our final destination . . . cancer-free, worry-free, and completely healed.

Thank you all for your constant prayers. I know that so many of you are upholding us through this journey. You are an incredible blessing!

(Meet the newest addition to our Crew! This is "Lego." He is my seven week old yellow lab that shows true potential as my cancer therapy pup. He could not have come at a better time.)

Lessons of Love from Cancer

I am so thankful to have a family that has loved, supported, and carried me these past eight months! Below is a guest post by Mom. Her words reflect our lessons we have learned from cancer. Enjoy! 

Dearest members of Caleb's Crew,

As we reflect on this past year of 2015, it has been the worst year of our lives- and yet the most life-changing. God has taught us many sacred lessons, that could only be learned in this dark valley. 

First of all, we have learned that we are never alone. In the most terrifying moments, God is there. When you are in the "cannot-breathe" moments, God will make Himself known. He shows up in such unexpected ways. The words of a hymn will come to mind, 

"Every joy or trial fallen from above- Traced upon our dial by the Son of love. We may trust Him fully all for us to do. They who trust him wholly, find him wholly true."

The words of a friend, a smile from a stranger, a letter in the mail- are all gifts. As you pray for us, there is a sense of relief. Like we can exhale deeply. Your prayers breathe life back into us.

One of my favorite memories from this past year is when one of Caleb's resident doctors came and prayed with us before Caleb's first chemotherapy treatment. One of our greatest fears was met with the faith of a friend. God's confirmations are all around us.

Secondly, we are learning to be thankful for every moment of breath we have. Every day, hour, minute, second . . . is a gift. That is why it is called the "present". (Not very original, but I loved it) Treasure the precious "snapshots" of life. Be on the lookout for them, they are everywhere. Caleb is leading us in this. He is teaching us how to be thankful by example. Thankfulness changes your perspective. 

Last of all, love looks so different now. It is so beautiful in its unrehearsed, spontaneous in a life-giving way. Did you know that love gives life? It's like water to a dry plant. Children blossom under the care of love, we as adults flourish and grow. Unconditional love has no motive except the best for the other person. Love dies to itself to help others. In our darkest moments, love shines so bright- it is breath-taking. There are no politics in love- it cannot be silent or neutral. Love has to act, to bridge gaps. You have to smile when love shows up in a spontaneous meal, or a Starbucks gift card, or Caleb making us laugh so hard that we are crying and begging him not to say another word . . . which he of course does. :) 

And that is what brings me to all of you. You have shown us “what love looks like”. You have carried our heartaches as your own. You have given and sacrificed to bring the relief we have been comforted by. Many have given out of your own need, you have prayed for Caleb as if he was your own child. You have showered us with love. Our children’s faith in God has been strengthened- because of you. We will be forever indebted to each of you. You have taught us that in our darkest moments, love will show up.

Merry Christmas, Caleb’s Crew!

It is an honor and privilege to be on this journey with each of you.

Tina

(My incredible parents, Scott and Tina)

Candid Cancer Conversation with Caleb

As I sit and reflect on the recent happenings since my last blog, I can't help being overwhelmed by the darkness of cancer. As many of you have been following my story, you may remember a post this past summer, "Dealing in Death." Back in June I was facing the realities of what this cancer is capable of doing. Now I have experienced those realities on a more personal level. 

Since June, I have lost six fellow Ewing's fighters that I followed and with whom I communicated. Though I may not have known them personally, I travelled their journey from afar. Connected to each other through our similar cancer, I grew to love and pray for them. Now they are gone. So what does this mean? Why even mention this?

Cancer is more than just chemotherapy, radiation, and surgery. Cancer extends beyond the physical. 

I find myself in a difficult position. Part of me wants to explode with excitement as I finally see the tiny light at the end of my "treatment tunnel." Yet the overshadowing realities of what still lies ahead continue to bear down on my spirits.

I don't know if I can easily explain this, but it's like a roller-coaster. One moment you are riding high with the excitement of normal life in view, and the next moment you are crushed with the pain and suffering of both your fellow cancer fighters and yourself. The ability to process the pain of so many difficulties seems out of reach.

Although my doctors have cut two entire months off of treatment, I struggle with the realities that at very best my cancer has an extremely good chance of returning. I see a glimpse of normality ahead, yet still must process the fact that as I sit typing one of my favorite Ewing's Sarcoma fighters lays in the ICU as her cancer continues to spread. (Link to follow her story and pray)

Maybe I'm rambling. Maybe this doesn't make a lot of sense to you. However, in the past few weeks I have had to process others' comments about my cancer and this is sort of my response. 

So in conclusion, here's the ending to my rather blunt and straight-forward post.

I write this blog so you can truly see what cancer is like. All of the raw and real posts are to display the true realities of life with Stage 4 bone cancer. If these bother you, please stop reading. I don't want to offend or hurt anyone. However, I'm not going to beat around the bush when it comes to my cancer.

As for a brief update, my scans have continued to show that the cancer in my shoulder is dying. Because of the tumor's large size, we have decided on an alternate route to surgical removal. The "Tumor Board" decided that we will not do a de-bulking surgery, but rather leave my tumor in my shoulder where it now acts as a joint between my arm and shoulder blade. Though this may seem like a free home for the cancer to return, my oncologist said that if the cancer is going to return, it will do so whether there is a tumor or not. 

Please pray for me as my upcoming Stem Cell Transplant will take place some time in February or March. The procedure will be rather difficult, but very necessary! ;) 

Also pray most of all that the cancer stays in remission for the full five years. Due to the very aggressive treatment, once you finish there isn't much more your body can handle. The true fight with Ewing's begins once my body is in remission. The statistics for staying cancer free are rather depressing. Once  I finally finish my chemotherapy, the true battle to be cancer-free will begin. 

I've been fighting this terrible beast for 9 months now. Thanks to your constant prayers and support I am happy to say that there is no chance of me quitting! (Never was optional) 

Love to all! Have a blessed Christmas with your families. Cherish every moment!

(Hannah and I after our Chemotherapy/EchoCardiogram visit)

Just Imagine

When I stop and listen to all of the questions and concerns asked about my cancer, I have to wonder how much everyone really knows about cancer. Obviously, there are millions of people directly in contact with cancer fighters across the world. My goal through this blog is to share some of my journey- my interaction with this nightmarish disease. 

Today I'd like to take your mind on a tour. I know that there are thousands of readers spread out across the planet- so a real-life tour is a bit far fetched! ;) On this tour, you will have to dig deep in your busy mind and just imagine. 

Imagine if you had cancer. Imagine if all normality in your life immediately ceased and a new lifestyle was forced upon you. Imagine if your life goals were paused and your dreams stripped away. Imagine the amount of grief that is quickly instilled on all those that know you- the pain of possibly of losing you. Imagine if everyone you love and care for tries helplessly to aid you on your new journey.

(Sleep- the one escape from the onslaught of nausea)

Imagine if you had to start treatment: unknowns from every angle. Imagine the fear of subjecting your body to hazardous drugs that are now your lifeline. Imagine traveling to the hospital, knowing that for days your body will continually be fighting not only cancer but also the life-saving drugs. Imagine laying in a hospital for an entire week with constant waves of sickness flooding your body. Imagine being so sick to the point that knocking yourself out is the best option. Imagine the heaviness of these treatments for months on end. 

Imagine yearning for normality: a simple breath of relief. Imagine the waves of sadness as you watch your fellow cancer fighters fall victim to their disease. Imagine the weight of death that is present in every day. Imagine being submerged in a world with the statistical odds always stacked against you. Imagine your future looking so bright, yet so clouded by uncertainty. 

(P4's Tree of hope for all the cancer fighting heros!)

Imagine life and family being all you fight for. Where every day is a battle against your body and mind. Imagine watching the world go on while you fight a battle so few can truly understand. 

Though many try, few can truly grasp the enormity of cancer. Those who fight this battle realize that the most precious thing in life is not made of a certain material, but rather is the time we are given.

It seems that the greatest gift one could truly give is acknowledging that you cannot truly grasp where a cancer-fighter is. Knowing that it's not about saying the perfect words, but rather investing the gift that God only gives- our time together.

Throughout this holiday season, I am looking forward to making that investment - our time together. Though the past is constructed of happy memories, I find it important that we create only happier memories now. In all honesty, none of us are guaranteed a tomorrow! The smartest investment we can make is in each other.

Try and give the gift of being together! That is one gift that you can't mess up. :) 

(Rolling with the family, getting out of the house is an incredible break from the monotony of treatment!)

Thankfulness

I know I have posted before about thankfulness, however, there are a few reasons to write on this topic. First off, writing these blogs is just one way that I can cope with all the incredible emotions that cancer offers. That being said, why not reflect on the positives of my cancer? Also, seeing that Thanksgiving is next weekend, how could I not reflect on thankfulness?

First of all, I am thankful for my primary support group- my family. Through these past seven months of treatment, my family has carried me through both painful treatments and dark days. Without these anchors in my life, I know that I would be tossed, battered, and beaten without any sense of direction or hope. I would also like to express thanks to my incredible Aunt Jenny! Yet again she was able to help spread our story by lining up an interview with the Janesville Gazette. (click HERE for link) Through the past seven months, I have seen our family draw closer together while facing most people's greatest fear. 

(Jordyn and I "personalizing" her masks) 

Secondly, I am thankful for my second family. The nurses at American Family Children's Hospital have been nothing short of amazing. Every other week I get the privilege to pack my bags and move back to my second home. Though my body is subjected to chemotherapy, my spirits are always lifted by the time spent coloring masks, singing, or hanging out at the Nurse's Station! 

Finally, I am incredibly thankful for all of you! I know this may seem a bit "general", but your constant prayers, love, and support has continually upheld my family and I through this. Wether it be our neighbors love-infused meals or your daily prayers, I could not be more thankful for all that you have done! I am truly blessed to have such an amazing crew! :) 

(A perfect thought for this Thanksgiving Season)

In conclusion, this Thanksgiving I have learned that though life may be far from what I want- I can still thank God for all that He has given. Cancer has shed light on the fact that what means the most to me is not in material objects- but in my family and friends!  

Halfway

As I sit here trying to force the "perfectly enlightening" blogpost, I struggle with the reality of where I am. Though many would consider the halfway point to be the "breakthrough" I seem to dread what is still to come. 

 I would like to break down the halfway point into two sets of realities. 

First off, the reality of what lies ahead.

Though I have fought through seven months of treatment, it seems to only get harder. Instead of my body adapting to chemo, it is only breaking down. My cell counts continue to plunge with no sense of urgency when it comes to bouncing back. Mentally, I am growing to despise treatment. Sometimes, the more you do something- the better it gets. However, with chemotherapy it is the polar opposite. With every treatment the nausea worsens. It's like my body knows what is coming, and "throws a fit" before I even begin.

With the harsh realities that chemo brings, it seems best to ignore myself and just press on. Though I could sit here and wallow in the grief and pain of it all, I'd like to move on to the second reality.

The reality of what I have gained.

Through this journey, I have been incredibly humbled at the support that has been shown. Whether meals from our neighbors, letters in the mail, messages on Facebook, or the thousands of prayers- you all have been there from the beginning. I cannot thank you enough! I have come to know many other cancer fighters, nurses, and friends along this pathway. You all alone are priceless!

Secondly, the memories that have been created are amazing! When you live with a disease that steadily claims 70% of those effected, you learn to cherish every day. I owe an incredible thank you to my family who has supported, cared, and loved me through every step of this journey. Whether going to a Josh Groban concert in Chicago, or simply working for my brother's business, I have found that being thankful for every day God gives brings more happiness than the cancer can take away!

(An incredible supper before our concert!)

For myself, cancer has taught me to cherish the moments that God gives to me. Learning to live like there is no tomorrow isn't necessarily a bad thing. Though cancer would like to strip normalcy from me, I have found that doing the "most normal" things will help to get me through this.

(Josh Groban in the Chicago Theatre!)

Warped Normalcy

Hello my dear friends and family. 

As many of you know, our family has been hit (yet again) with another major diagnosis. 

(My beautiful, always protective and caring Princess)

This past week we found out that the youngest Type One Trio member has been diagnosed with JME (Juvenile Myoclonic Epilepsy). For the fifth time in five years we have been blindsided. Normality continues to be warped into a jumbled mess of grief and hardship. I look at our life and momentarily wonder if there is any control in the chaos? If there is any relief in the pain? 

Obviously, epilepsy is even more complicated with Type One Diabetes. Low blood sugars alone can send Hannah into a seizure. Complications come with this new diagnosis as well. It's not just "simply" Type One. It is now fighting the reality that every night we watch Hannah head to bed, there are two diseases with the ability to send her young body into danger.

I live for hope. 

It's what I must do. Without it, I drown. 

Within the harsh and overbearing realities that overwhelm and flood our lives, a light stands bright. In darkness, light shines the brightest.

Is this life easy? Is this life comfortable? Is life convenient? Not at all. 

However, the wisest move to be made is that of trusting that this isn't what we live for. 

YOLO - you only live once. A popular statement, no? 

But afterwards... our destination arrives. Only security in eternity provides security in this life.

Due to the fact I haven't had chemo in three weeks (bad blood counts), I have had the opportunity to show my face in public. The most common statement I hear is, "Wow! You look way better than I imagined! I can't believe you are out!" I always respond with a kind "thank you" and resume enjoying the freedom. However, please understand. Though I present myself in an alive manner, it is because I fight for that. I fight to remain myself. At the beginning of this journey, I found that without consciously working towards a state of normality, cancer would beat me down. It would strip me of who I am and the personality that defines me. So simply, thanks for the kind remark - but if you were able to enter my body for one hour you would be overrun with a flood of physical and mental pain. This is what cancer is and does. Yet, I plan to withhold the opportunity for cancer to steal the show! ;) 

I want to thank everyone for the amazing support that you have given. Letters, meals, and kind gestures of love have flooded the Hatchett home!

 (Friend and neighbor Sheriff Otterbacher took me for an awesome day of radiation!)

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!)

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

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)

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

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)

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.

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.

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!) 

"Cancer Difficulties: In Me" by Me

What is the most difficult part of cancer?

This seems to be my most frequently asked question (and often one that I wondered) before I entered this new world. Before I break it down, I have to disclaim and inform you all of an important fact: this is me. I can’t speak for others who have had cancer, but now I can certainly relate. Every cancer is different and difficult in many ways. 

So what are the hardest things about cancer?

It’s evil.

Both my younger siblings and I have lived for five years with a deadly and serious disease- Type One Diabetes. T1D doesn’t play by the rules. It ruins days, ruins weeks, ruins plans and wrecks havoc on normal life.

Cancer is different.

 Cancer attacks the body and mind with an evil vengeance. . . At times it makes one doubt their will to live. It cripples the soul and works to drag one’s focus onto the ominous task of surviving. Cancer thrives on the fear of the unknown - the opportunities that could arise at any moment. Hence, I think I can easily state it’s apparent evilness.

It’s selfish.

I used to have an incredibly focused and driven life.

Fueled by my ambitions of becoming a pediatric nurse, my days were carefully structured and managed to raise grades and become the best nursing student possible.

Then I was blindsided by my cancer.

College stopped completely as new tests, surgeries, and appointments filled my agenda. With only two weeks two go in the semester, I was completely stripped of my opportunity to finish strong. My ambitions and dreams have come to a stand still, and now I have at least two years of fighting. With a year of chemo/ radiation/ surgery/stem cell transplant, and then the process of removing/rebuilding my entire shoulder blade - happiness and hope are easily fogged out by the darkness that is my cancer.

My emotions are easily shaken by the longing for normal life of one day being a pediatric nurse! The simplicity of helping others without the dark reality of living just to “beat the odds”.

It’s powerful.

The sickness that I feel isn’t comparable to anything in life that I had experienced. I assume it is this way because our bodies are never meant to be this sick. Chemo kills the cancer, yet it feels like it’s killing me at the same time. Both the cancer and the chemo are working to destroy.
It’s a deadly duo.
 All this with the lovely combination of Type One Diabetes. Any T1D knows the comforting sickness that high blood sugars entail. Well, combine that with the BG-spiking chemo and we have a combination that will really send one for a ride! Yet even diabetes has a hard time topping the lovely side effects of chemotherapy - so far.

My reality.

So there it is. Up above I have detailed the side of this disease I usually don’t describe: the harsh, demanding, selfish battle with cancer that seems to strip me of so much!

Even as I type this out, my head begins to spin. Emotions begin to flood my heart and thoughts of the hardships ahead make me yearn for a normal life.

But first of all, this is all momentary. I can do two years. I can handle a month in the hospital in complete isolation because that means I can beat this cancer! I can do a year of chemotherapy because that means I can beat sickening statistics! I can do momentary.

Second of all, yes, cancer appears to be robbing me of everything I dream about and love. Cancer can take my normal life away. It can destroy even the normalcy of feeling physically well. But it can’t take away my core! Though at times I don’t feel like myself, I have an incredible support team, family, and God. Cancer can’t touch that.

Finally, the most significant question that people are asking me, and that I have wondered myself, is why God allows cancer and other trials in our lives. This is a very important question, and I want to lay it out somewhere other than the end of this post. Within the next few weeks, I’’ll actually add a tab called “Why Hope?” permanently on the blog. That will provide a great way to share with you the significance of what God is doing in my life right now.

The Awesomes / Not Awesomes Update

Well hey there world! 

There's so much to write about and then the difficult task of, well, writing it. 

I had my first 5-day admitted Chemo. This was actually incredibly interesting in so many regards. As I sit here reminiscing of where I was just a week ago, it is like trying to think back to a year ago. How so? I'm not sure. I suspect either the chemo did it- or my nurses slipped some "forget-everything drug" into my port. 

Due to the fact that my awesome nurses are now part of my blogging audience, I'm gonna go with the chemo.

In my opinion, the 5d Chemo has wrecked many more side effects and havoc. Through the week of chemo, I "felt" like I was me. I slept a crazy amount - yet I still played soccer in the hallway with my PT dude, talked to my doctors (sometime), and did all the extremely thrilling things people do in hospitals . . . but I only vaguely remember all of it. My family has enjoyed fabricating false stories and now I have had to beg to find out whether they are true or not.

(My T1D nurses! If I look partially drugged ... it's because I was.)

Also during my stay I got to meet two of the nurses with T1 Diabetes. The one on the right is practically one of my main P4 nurses for the next year: we have a blast! All of my nurses are incredible - I just didn't get a picture with every single one. (I have a feeling I will be kindly reminded by the rest upon my return) They also have become fans of the "Diabetes4Dummies" videos Daniel and I put together - as they had ever so kindly referenced on the welcome board...

(If you haven't seen "Food Police", you can watch here)

Instead of rambling on, I thought I would conclude this update with my ER trip. As many of you heard, I was in the ER on Tuesday - for 14 hours. Although it was extremely complicated then, thankfully it is more simple now that we are on this side of it. Tuesday I was instructed to go to the ER after "blacking out" and also having low blood pressure/ sodium levels. Upon getting to the ER, my blood pressure was fine, but my heart rate was hitting 130s (should be 60-90s). To make a long story short, they had an EKG done, put me on fluids, and monitored me for 6 hours. I was very dehydrated from the 5d Chemo, my wonderful sleeping spells (wasn't drinking fluids), and high blood sugars (from Chemo). After my heart was stable, they re-evaluated and gave me the go-ahead to go home. 

Ten minutes from home, I get a call from the ER saying that I possibly had blood clots in my lungs - thus putting a strain on my heart. So, we turned back and headed up for an MRI. Due to a bad night in the ER, we waited 9 more hours and didn't get home till 6 AM. The tests came back negative on the MRI, and it was just my lovely Ewing's tumors in my lungs (EKG) and severe dehydration (heart rate) that caused the wonderful dilemma. Anyways, thank you all so much who were praying for me during the lengthy event.

In conclusion, thanks a million for your support, prayers, and encouraging messages you have sent! 

Small/big detail: my platelets and white blood cells are low so I may be going in for transfusion on Saturday/Sunday. I also have a 2 Day Chemo on Tuesday (if transfusion goes well), so if you could pray that my counts cooperate and I can stay on schedule that would be awesome! Seeing I have a year of this to go, I'd rather not get off track this early on. 

You guys are an amazing support group!! 

I'll update soon!

(My main activity during chemos, with my little princess)

Temporary Hairlessness

I'm finally back on my laptop since last I posted. 

I thought that with all of these crazy happenings I would be totally on top of blogging, FB, and all the updating . . . but usually, I would rather sleep than think. 

So here are some answers to the top questions I am sure many are wondering at this time...

How are we doing? I would say very good, considering. I personally figured that once I started chemo I would "snap into the reality" that I have cancer. It didn't work. Not to mention, we pretty much had a "second diagnosis" while in my first round of chemo (In my last post I let you all know that the cancer spread to my lungs). However, for me that is a much bigger deal than I care to delve into right now. Thankfully, my oncology team is still optimistic about it all! So I'm going to bank on that and the BIG reality that we have a big God instead of going off into all the lovely statistics and articles I have read. 

We head in to the hospital this coming Tuesday for five days of chemo treatments. I'm not at all looking forward to being cooped in the hospital for a week, but since this will be common-place for the next year, I'd better buck up and learn to like it. The staff is absolutely incredible! I couldn't have better doctors, nurse practitioners, or nurses in the world! (NOT to mention I have a Type One Diabetic Nurse!! Yeah! so totally fun) So I do have positive things to anticipate - which is a blessing. 

(The "temporary hairlessness" happened on Monday. I shaved it instead of it all falling out soon)

I find days have their own ups and downs. Obviously they aren't all "ups." Between sickness, nausea, low white blood cell counts, and the craziness of having three T1Ds, days can definitely bottom out. Yet what helps is the incredible support that we have (you included): being with my family, getting outside in this amazing weather, and focusing on anything other than the fact I have cancer. :)

In conclusion, we are starting to find our groove. We just have to keep plodding and focus  on beating the odds and kicking this cancer!! Thank you so much for your prayers, emails, and love. It means more than I can sometimes personally express thanks.

Until the next update, See you then! 

(I must say, supervision is much more fun than actually working ;) Lots of fun out with Sam and Jon)