Caleb’s Story

Site created on May 13, 2020

Caleb has always kept us laughing and at the same time, kept us on our toes too. His is active, curious, full of energy yet also a sweet guy. We started noticing a few months ago that he had some swollen lymph nodes in his neck that we were watching and monitoring. He didn’t have any other signs or symptoms and after several tests and a lymph node biopsy, we were diagnosed with Nodular Lymphocyte Predominant Hodgkin’s Lymphoma on May 11. Since then we have sought out our cancer treatment at St. Louis Childrens Hospital, finding it to be Stage 2. God has blessed us beyond measure throughout this diagnosis and treatment and we are oftentimes overwhelmed and humbled by the love and support you have shown us. We are not lacking in any way, and established this (FREE) website to help keep others updated on Caleb’s progress.

Newest Update

Journal entry by Julie Terry

Ever changing plans...

If there is one thing that we all have gotten well acquainted with, not by just knowledge, but more so by experience, it is plans change. I like to plan things, both short term and long term plans but I’ve realized that the ultimate accomplishment of plans is not in my control-it is in Gods. God frequently reminds us that while it is okay to plan, it is not okay to think that we can accomplish anything without His allowance. 

There are three little words I love to hear “complete metabolic response.” Had you mentioned those words to me a year ago, they would have had little value to me, but as a parent of a child with cancer, they are priceless to me. We have been privileged to hear those words every time for the last 3 PET scans. There are some families who long to hear those words once indicating a loved one is in remission, but never will-we are most grateful. I am utterly relieved when the test shows no sign of cancer, knowing Caleb will not have to endure the pain and sickness that comes with cancer. We have been on an every 3 month cycle of PET scans, CT scans and other tests, aside from our monthly labs and oncology appointments. Last Thursday, our insurance company denied coverage for the PET scan we were to have on Friday, despite a interview between the oncologist and the insurance company. We were warned this would eventually happen but due to Caleb’s particular type of cancer having a higher relapse rate, they would keep trying until there was complete denial of coverage for it. That time has come and I am not surprised by this knowing we have incurred over $340,000 in paid medical bills within 9 months last year alone-I figured our medical expenses would be on a strict audit trail. So we have shifted from PET scans to CT scans with contrast from the neck to the pelvis. While I didn’t hear those sweet words of relief (complete metabolic response), I am very grateful for this transition. Sometimes I forget where my faith belongs and this has caused me to reevaluate that my faith doesn’t belong in medical test results, but it needs to reside in God-this transition has made that clearer. 

Caleb is doing well. His CT scans were unchanged, labs look good and last weeks appointment went well. We remain very grateful for so many things: insurance that has covered the majority of Caleb’s expenses, a great health care team that not only strives to protect Caleb but also the 300 other kids they treat (I have to remind myself of this every time he gets a cough which ends in a COVID swab), his wonderful and gracious teacher and principal who allows us to participate online despite being gone from the classroom so much, but I am most especially grateful for all the moments you have prayed for us. Our faith continues to be refined as plans change-sometimes from day to day, but God keeps reminding us that life is fragile and we are not in control, He is. I am so very thankful that He opens doors and shuts them, all for our spiritual benefit and because of His love for us despite my many weaknesses and flaws. The best words one could ever hear are not “complete metabolic response,” but they would be God saying, “welcome faithful servant” because of the ransom His Son paid for us and for our failures. To God be the glory, no matter what circumstances we find ourselves in-open doors or shut doors-they are all in His control. 


6 In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, 7 so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ; 8 and though you have not seen Him, you love Him, and though you do not see Him now, but believe in Him, you greatly rejoice with joy inexpressible and full of glory, 9 obtaining as the outcome of your faith the salvation of your souls. 1 Peter 1:6-9 

1 The plans of the heart belong to man, But the answer of the tongue is from the Lord. Proverbs 16:1 

9 The mind of man plans his way, But the Lord directs his steps. Proverbs 16:9

5 Trust in the Lord with all your heart And do not lean on your own understanding.6 In all your ways acknowledge Him, And He will make your paths straight.7 Do not be wise in your own eyes; Fear the Lord and turn away from evil. Proverbs 3:5-7 

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