Thursday, April 30, 2015

Ewing Sarcoma

So we found out a lot today. 

As one could say, "we've been through the ringer." Between information, statistics, and an overwhelming battle plan - one could correctly suspect that we are spent. 

Now I sit here trying to summarize the helpful, "encouraging," useful information to share with you all (my incredible support team... that's you!)  ;-)

First of all, it is a question no more- I have Ewing Sarcoma.
What is Ewing Sarcoma? 
It is an aggressive, rare (1% of all pediatric cancers), type of bone cancer. It forms within the bone marrow and then "breaks out" forming into a tumor of soft tissue. There are roughly 200 cases of Ewing Sarcoma diagnosed within the US every year. 

I have just joined the 200.

So where do we go from here? I was transferred to the UW American Family Children's Hospital as of today. The best news of all is that the cancer is localized within and around the tumor. However, I will be having more tests run this coming week. The following Monday I will be going in to have my chemo port installed, a bone marrow biopsy done, and will begin my first chemo treatment that evening. 

So here's the real hum-dinger.

I expected maybe two or three months of chemotherapy. But I was slightly off in my calculations. According to my Oncology team, I will have 36 rounds of back to back treatment. Within these rounds, 8 of the blocks will vary from 5 days of Chemotherapy - to the smaller treatments where I will be held at least two days for one day of treatment. My doctors advised me to plan for a year of chemo... between Type One Diabetes, low white blood cells, low red blood cells, low platelets, low blood sugars, high blood sugars, high fevers (you get the point) ... it will not be a smooth 40 weeks as planned. Those 40 weeks would have to be flawless. 

So here's the analysis: this cancer can be beaten. If we nip this in the bud, I could possibly have this behind me for the rest of my life! According to the PET scan, there are no signs of spreading away from the tumor. This is a big answer to prayer! Yet again, we really won't know the full effectiveness until they do further testing in five years.

This cancer is also extremely aggressive, mean, and a lot like Type One Diabetes... selfish. In order to kick this thing, we have to smack it around with some serious and lengthy chemotherapy.

So in a way there is good news, and in a way there is bad news. Depends which side of this coin we are gonna look at.

Thank you so much for your prayers! They are deeply appreciated.

(Many friends have asked to help at this time. My Aunt Jenny has set up a fundraising page to off-set some of the medical expenses that are quickly mounting. Thank you so much. Click Here


  1. Caleb, I'm praying for you and your family. Love you all! ~Abbey

  2. Caleb, we are praying for you daily! Thank you for your clear testimony as you trust in the Lord through this trial. Much love to you and your family.

  3. We love you Caleb! <3 You are going to beat this! Our family is behind you 110%! You have all our hearts, prayers and love! You got this!! #GodIsBiggerThanStatistics

  4. We will be praying for you, Caleb. The Dan Kowach family

  5. Praying for you Caleb and claiming Jeremiah 33 : 3 on your behalf. I love your family so much!

  6. Praying for you! Following your story through my brother, Luke. Psalm 103..... as a fellow young cancer patient, this has really encouraged me. And James 1, and philippians 4. :) Praying for healing!

  7. I love you dearly. I am so proud of you for your fight, determination, and willpower to overcome this. God is going to use you in such a huge way...He's already started! XOXOXO

  8. Praying for you. Thank you for your testimony and faith in God. He will use this trial for His glory. He is The Almighty One, He is a able!!
    Love, Jake and Ramona

  9. We are all praying for you and your whole family! God is faithful- a God of comfort, abundant grace, mercy- He will never leave you or forsake you.

    Ed/ Heather Wynn and Nicole Vorpagel

  10. My thoughts are with you Caleb. With your positive mindset I am sure that you will be able to overcome the long road ahead of you. Best wishes, Frank


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