Jonathon’s Story

Site created on February 16, 2018

Jonathon was diagnosed with Multiple Myeloma (cancer of the blood plasma) on May 15th, 2014. He underwent two autologous stem cell transplants in July and October 2014, followed by two years of continuous maintenance chemotherapy which ended in mid-October 2016. He relapsed in June of 2017, and after six months of additional chemotherapy, relapsed once again sending him onto yet another drug protocol which also turned out to be ineffective. The best course of action was deemed to be a third stem cell transplant using the last of Jonathon's stem cells collected nearly four years ago. As soon as his blood counts recover to acceptable levels, he will be put back on a continuous maintenance chemotherapy regimen (yet to be determined)  with the hope of keeping further myeloma development at bay. There is no cure for Multiple Myeloma and this cancer is considered to be one of the most complicated cancers to treat due to its propensity to morph into multiple variations of cancerous cells throughout the bone marrow. Through this journey, we have gathered great strength from community and we believe in the healing power of our collective energy. We appreciate your support and words of hope and encouragement and are grateful to have a place where we can gather and share. Thank you for visiting.

Newest Update

Journal entry by Nancy Hagen

We’re gearing up for our return to Iowa City on Monday, July 8😍 🎉👍 Can’t believe we’ve been in Milwaukee for three and a half months. The last ten days have been challenging, but we are remaining positive. A recurrence of ‘numb chin syndrome’ and searing jaw pain prompted another brain MRI and a mandibular MRI, which confirmed three tumors in Jonathon’s jaw, with one of them likely pressing on the mental nerve which is causing all of the discomfort.

Our June 24th meeting with our primary oncologist , Dr. Hari, netted lots of good news regarding Jonathon’s new immune system. While the cancer is not in remission, Jonathon has had a very good response to the allogeneic transplant and there's a chance we can keep things stable for a while.

The jaw tumors mandated a prompt course of radiation therapy that finished up today. Jonathon is being put back on a couple of myeloma drugs to boost his immune system and Dr. Hari is asking us to focus on the BIG picture. While it’s easy to obsess over the continuing presence of the Multiple Myeloma, Jonathon is in much better shape than when he was admitted to the hospital on March 29th. Dr. Hari considers Jonathon’s cancer stable at the moment and we will report for weekly labs at University of Iowa Hospitals and Clinics beginning next week, bi-weekly infusions at UIHC and a monthly visit to Dr. Hari in Milwaukee until there are changes in status. The hope is to keep Jonathon stabilized for a few months to allow his new immune system to take hold, which takes at least six months. Six months post-transplant is also one of the qualifying factors to be considered for clinical trials.

We are grateful for the ongoing support of family, friends (many thanks to so many for donating vacation time so I can focus on taking care of Jonathon!! 😘) and for the amazing healthcare professionals at both Froedtert Hospital/Medical College of Wisconsin and the University of Iowa Hospitals and Clinics. Cheers to you all – and we wish you a fabulous 4th of July holiday and continued summer fun! 🎆🍦😎 Our hearts are FULL! ❤️

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