Thursday, February 11, 2016

Texas, Transplant, and Foreseen Triumph

(Enjoying the beating the Broncos gave the Panthers)

First off, for those that did not know- I just returned from an amazing trip to Texas! My friends, (pretty much like family now) the Tindells flew me down to Texas for a Super Bowl Party. My Ewing's Sarcoma Hero, Sarah Tindell, passed away this past December. She was my cancer coach and although we never met, we developed a special friendship through our common bond of cancer. Sarah's favorite NFL team was the Denver Broncos. She was diagnosed close to two weeks after the last Bronco's Super Bowl appearance in 2014. The fact that the Broncos made it to Super Bowl 50 made it so much more special when they went on to win. Sarah was truly the MVP, they just didn't know it. A special thank you to the Tindell Family for having me and for making the trip to Texas so awesome! :) 

Scans are complete, Consent / Consult meeting is done, and Transplant starts in six days.

To say I am nervous is an under-statement. As of my last blogpost, I was fairly confident that I knew what lay ahead. Last night, I found out that I didn't. Though I could probably write a very lengthy post on all that transplant will entail, I will try to summarize... We'll see how it goes.

First of all, the Stem Cell Transplant is a life-saving procedure to counteract the extremely powerful chemotherapy I will be receiving. (I had no idea about this) Though I truly wish I could reveal the names of the two chemo drugs I will be given, I am afraid I have no idea... I blame this on "Chemo Brain." What I do know is that the main chemo drug will target the Ewing's in a very aggressive manner. It is so aggressive that it will completely destroy my bone marrow, hence the need for transplant. The goal is that through this treatment, any remaining cells that may have not died from the past year of treatment will be destroyed. 

Secondly, the recovery from transplant is very strict and long. For six months post-transplant, I will not be allowed to be in public places such as school, church, or even stores. I will not be allowed to attend parties or social events. I won't be allowed to have direct contact with soil, plants, or lawn mowing - no working for my brother's landscaping business. :( I will have to be indoors with all windows shut. If I want to go outside, it will only be allowed if I am wearing a mask. 

Pretty much, my dreams of returning to work this summer are over, and I will be placed under house arrest. 

Finally, the Transplant is dangerous.
There are common side effects which are fairly treatable... and there are not so common side effects which can be fatal. 

For the common side effects, we are looking at Mucositis, low blood counts, and common chemotherapy side effects. 
Mucositis is caused by the chemotherapy and is seen in the breakdown in the linings of the mouth, throat, esophagus, and digestive tract. Usually these areas will become enflamed, extremely sore, and swollen. Last time I encountered this, my throat was so closed off that I couldn't even swallow my own saliva. In other words, it is extremely uncomfortable. Take Strep Throat and multiply it by 100. Trust me, I've had strep. ;) 
Low blood counts will obviously be treated by transfusions. Seeing I've had over 20 transfusions, there aren't too many concerns there . . .
Some other things they are a little worried about include fevers, infections, blood pressures, and oxygen levels. For most of these side effects, I will have to be admitted to the ICU because of the extreme fragility of my body. Any infection can pose a huge risk. If they cannot get an infection under control, the results are often deadly. I was told even a common cold can kill a transplant patient. Pleasant thoughts . . . 

And now for the deadly side effects! Haha, isn't that just wonderful? 
The first is called HSOS, or Hepatic Sinusoidal Obstructive Syndrome. This side effect occurs to some degree in 50% of transplant patients. In HSOS, the blood vessels in the liver swell and block the blood flow. This results in the liver being unable to remove waste products from the bloodstream. There will be drugs they will administer to counteract this. However, the best treatment is White Cell count recovery. 

They will also be watching for Lung Damage. This can be both mild or severe. In many cases, a patient is put on oxygen or a ventilator to help them breathe. In some cases, lung damage is long-term. 

The final serious side-effect is Cardiomyopathy. Heart damage from this is rare but life threatening. Pretty much, the crazy amounts of aggressive chemo I have already received pose a greater threat to me than the chemo I will be getting. They said if I get this, they will have no idea what drugs did it!

Now I could go into all the "long-term side effects," but I really don't care for them. The list of long-term side effects are so long already after a year of chemo, forty-one rounds of radiation, and now transplant - that I don't even care to know. Lets just say there is a large chance for organ failure, early death, secondary cancer, and many other pleasant problems. In my opinion, I'm taking a chance - but on the other hand at least I have a chance. I'm fighting incredible odds that say I won't be able to beat this. However, if this saves my life- it's all worth it! 

Well, looking back at all my rambling I guess that I didn't really shorten it. Oh well, if you want to skim read - I won't judge.

Transplant is this coming Wednesday. Your prayers would be appreciated. 

Much love!

(Ready to take on Transplant)


  1. Praying Caleb, for you and your precious family! We missed you all tonight at your Gr. & Gr. Celebration, but a lot of prayers are going up for you among us Minute Men/Women for Camp Joy! Tell your Mom I am praying especially for her!
    Love & prayers!
    The Aaron Barrett Family & Heartland Baptist Church

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  3. Caleb, please know that we are praying for you!! Our church is praying for you!! I will be praying daily for you to BEAT this cancer!! We love you and your family, Caleb!! I love your testimony of faith and courage. Thank you for being real and transparent as you share your journey with us!!

  4. That is a lot to face for any young man! Thank you for sharing your heart and the plans for the future so I can pray more specifically. Which medical facility are you working through? Are there specific doctors I can be praying for? May God bless you with His hope, His strength, His peace and His joy in tribulation. Isaiah 26:3
    In Christ, Laurie

  5. Praying for you as you face this new challenge!

  6. Thanks for the update, Caleb. You are in my heart and my prayers!!

  7. I do wish that you could have learned all of this stuff theoretically as a nursing student instead of first hand. I will continue to pray for you, Caleb.

  8. We have been following your updates. Can't imagine all it involves. You and your family are in our prayers. Miss you all. Paul and Naomi Sondergaard.

  9. We have been following your updates. Can't imagine all it involves. You and your family are in our prayers. Miss you all. Paul and Naomi Sondergaard.

  10. I know you can do this, and I'll keep you in my thoughts. My aunt had a bone marrow transplant and it was a long, tough road full of a lot of similar things that you'll be going through. But today she is healthy and cancer free!! I wish the same for you!!

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  14. Caleb, my husband and I have been praying for you since shortly after your diagnosis as we learned of your cancer through a mutual friend at our church, Grace Batpist is Waukesha. We now pray for you through eyes that sadly have a much greater understanding. One week ago today, on his 8 month wedding anniversary, our 25 year old son was given the diagnosis of stage 4 lymphoma. He lives 13 hours away with his wife and her family in PA. He will start chemo on Tuesday. As we pray for you and the life-saving stem cell transplant you are now going through, would you please pray for our son, Matthew, and his wife, Shelley. We are all just beginning this journey. May God give grace upon grace and mercies anew every day. And may He grant you healing and health.

    Resting in the only Hands that truly uphold,
    Diane Brader

  15. Your blog gets around. We are in Germany. We are praying for you and your family through this. God is faithful.
    Debby Weishaar

  16. Just found your blog from the Ewings sarcoma awareness group. You will be in our thoughts and prayers for beating this horrible disease. We know Maggie Cupit. She has beat it and is now 5 years past it. Our daughter has just finished her 4th chemo. She is having re-scans today and tomorrow. I wish no one ever had to experience this disease but since we are facing it, I'm glad to read of another person's victory.


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