Jon’s Story

Site created on November 9, 2013

"Trust in the Lord with all of your heart and lean not on your own understanding: in all your ways acknowledge him and he will make your paths straight. " Prov. 3-5,6 


On April 27, 2009 Jon was diagnosed with a massive brain tumor. His diagnosis was followed by 2 major surgeries and too many answered prayers to count. His tumor was a very rare malignancy known as hemangiopericytoma (HPC) of the brain. The post-surgery MRI revealed 3 residual tumors so he followed up with 33 days of high-dose brain radiation. Jon's complete recovery was nothing short of a miracle and his tumors remained stable for 4 1/2 years. On Nov.6, 2013, he learned that one of the residual tumors at the base of the brain (right behind his left maxillary sinus) had begun to grow. He had endoscopic surgery in November but a post-op MRI on Dec 13 revealed more growth. He had more extensive skull base surgery on Thursday, February 6, 2014, at MD Anderson in Houston, TX.  After a 21-day hospital stay, Jon recovered and returned to Houston in August 2014 for extensive reconstructive surgery.  All was well until a December 2014 scan revealed many tumors in both of his lungs. Doctors continued to monitor Jon's chest, abdomen, pelvis, and bones for metastatic disease. In February of 2017,  more tumors were found in the lungs, kidneys and liver.  Throughout 2018-19 Jon underwent extensive kidney surgery as well as ablation therapy to his kidneys and liver. He is currently on a chemotherapy cocktail to shrink current tumors and prevent future metastasis. Jon is a busy dad. He works full-time and enjoys every minute of LIFE with his family. He is thankful for the love, support, and prayers of many. 


If you'd like to hear more about Jon's journey you can visit  https://youtu.be/cY2JCbhPlWQ  to (https://youtu.be/cY2JCbhPlWQ%C2%A0%C2%A0to) view a short documentary-style video that tells more about his 2009 diagnosis and recovery. 

Update: Jon continued on this chemotherapy cocktail and in an attempt to stabilize his cancer he tried many other treatments. In July of 2022, tumors had spread to his liver, pancreas, spleen, lungs, hips, pelvis, and heart. Jon never stopped fighting and remained active, enjoying every minute of LIFE with his family until Jesus called him home on September 18, 2022. 

Newest Update

Journal entry by Amy Niemi

"Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

Dearest Friends, 

Spring 2022 was full of parties, celebrations, and wedding bells as we welcomed another beautiful daughter into the Niemi Fam. Our Joshua married his Jessica on April 9. The ceremony was absolutely beautiful as was the bride. Jessica fits our family perfectly and the day was filled with smiles, laughter, and happy tears.  They moved to an apartment 30 minutes from us where Josh is working as an ICU nurse and Jessica as an editor.  Spring quickly turned to summer as Elizabeth finished her sophomore year of high school and Eli moved home from his freshman year at Cedarville.   We spent lots of family time at local parks, festivals, lakes, concerts, and ice cream shops. Caleb is now working remotely so he and Sarah were able to spend more time in Ohio throughout a good part of the summer. In June, all 8 of us traveled to Florida to celebrate Father's Day in our favorite place.  It was the hottest week we've ever spent at the beach but having all of our peeps in one place for an entire week was something I knew we'd never forget. Summer quickly turned to fall as Elizabeth began her junior year and Eli moved back to CU. 

The Update

After my March update, Jon had his right hip treated with 5 days of radiation.  It relieved all of his bone pain and preserved the mobility of his hip. In April and May, he tried 3 rounds of chemotherapy that "might" have slowed down the tumor growth.  It didn't. In July he completed 10 days of radiation to his right lung and sternum. Despite all of the above attempts, his tumors continued to grow as did his pain.   By the end of July, Jon had too many tumors to count in his lungs, hips, spine, liver, spleen, pancreas, kidneys, sternum, and heart. In late July/early August he tried an immunotherapy trial that had the chance of slowing the tumor progression in his lungs. It didn't. Despite all of this, he was still hiking, kayaking, playing games, and enjoying time with family but the pain, discomfort, and shortness of breath were increasing.  Jon never complained but those that were closest to him noticed that one day of activity was followed by a day of rest. On August 15 Jon and Eli almost singlehandedly moved all of Eli's college stuff including one giant futon to the back of a snug little 2nd-floor dorm.  Jon's shortness of breath and pain continued to increase over the next week and on August 24 he was admitted to the hospital with a large right pleural effusion.  After a couple of weeks in and out of the hospital, it became clear that his respiratory system was failing and without a miracle, it was only a matter of time until his earthly battle would be complete. 

On Sunday morning September 18, 2022, Jon moved from our home to heaven. Our human hearts were completely broken while our eternal minds were rejoicing. The 25 days between August 24 and September 18 were some of the most painful but also the most beautiful. I watched our children drop everything in their own lives to care for us in ours. I watched grown sons give up career goals, schedules, and dreams to spend every minute with their dad. I watched daughters care for Jon, our sons, and me in some of the most beautiful ways I've ever seen.   When time stood still, I witnessed our family bond together as our days turned to night and back to day without rest. You see, for all of these years, Jon and I had been managing this cancer journey while caring for our children and at the end of the journey our children were caring for us. It was the most beautiful picture of unconditional love that I've ever seen.  When I questioned one of them about the choices they were making regarding their work they said, "Isn't this how you raised us?" "To always put family first with no regrets?"

Today marks one month since Jon moved to heaven. As I begin to process the days, weeks, months, and years of this journey I can't help but SEE God's amazing faithfulness to our family.  Am I disappointed Jon wasn't healed on this earth? That he isn't still holding me? Laughing with me? Leading us? Absolutely! Jon was my rock, my hero, and my very best friend. He was so easy to love and the pain and grief we are feeling are real.  But at the end of the day,  I can SEE how the same God that held us all of these years is still holding me now. I can SEE how He helped Jon raise our kids and show them how to keep their eyes on Jesus. I can SEE how this journey helped instill a spiritual maturity in our kids that is a result of God's grace during some very difficult seasons. I can SEE that God gave us time to make memories together, say all the things we wanted to say to each other, and never take a minute of life for granted. I can SEE how God used our pain to point others to Jesus. 

The Prayers

Where will we go from here? Well, just like we've done for the last thirteen years we will take it minute by minute, and day by day.   How can you pray for our family? You can pray that we will be comforted as we process our grief.  Some days it feels stifling. You can pray that we will continue to SEE His faithfulness and glorify Him in all things and that we will always point others to Jesus.  Jon always said that he didn't want a sad funeral but rather a giant worship party to celebrate his going to heaven. So, that is exactly what we did! I've included the link in case you ever want to watch it. It was another one of the hardest most beautiful days I've ever experienced.

Thank you for following us on this journey. Your prayers have carried us when we couldn't carry ourselves. I've been writing this page since November of 2014 but many of you have been praying for us since Jon's diagnosis in April of 2009.  As the days turned to weeks and months turned to years my entries became fewer and further between simply because I either didn't have the words or I chose to embrace the moment I was in.  Life on earth is short. Hug often, forgive easily, say I love you, and always keep your eyes on Jesus. 

Much Love, 

Amy

 

https://www.jamiesonandyannucci.com/obituary/JON-NIEMI

 

I Will Rise(one of Jon's favorites)-

https://youtu.be/l6paJbntGpU

 

 

 

 

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