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Apr 14-20

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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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