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!)