Aug 10, 2020 Latest post:
Sep 19, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. This journey started in 2016 when Paul went in for his first routine colonoscopy after turning 50. He was otherwise healthy. He came out of the procedure without any complications. His physician said they took a couple biopsies of some possible polyps but nothing out of the ordinary. He received a call one day at work from the physician with the bad news. They weren't ordinary polyps. He was diagnosed with mantle cell non-hodgkin's lymphoma. He then had to undergo multiple tests and scans for further workup. We got opinions at a couple different health care systems in the area and researched places like Madison and Mayo. We chose to stay close to home and really liked the program and team at Froedtert. This type of lymphoma is rare. It can grow quickly or slowly and change at any time. Right now there is no cure. Treatments are aimed at keeping the patient in remission. Paul had a CT every 6 months and labs every 3 months initially to track the growth of the cancer. At first, his was "slow growing" so we chose to do what is called "active surveillance". This means continued CTs/labs on a routine basis to measure disease progress. This changed in January 2020 when the CT scan showed significant growth. His physician said we now needed to treat. He received 6 rounds of chemotherapy with one pause due to COVID. His oncologist was fearful of Paul catching COVID when he was immunosuppressed from the chemo. When the chemo was completed, Paul had a PET scan, labs, and a bone marrow biopsy which showed he was in remission. But the last test came back positive for "residual disease". That is where we are now. Paul now needs a stem cell transplant. He has had numerous appointments to prepare for this process. He will be admitted on August 13th for approximately 3 weeks. He will not be allowed any visitors during this time. I thought setting up a Caring Bridge site would be a great way to keep everyone updated on his progress and to communicate to him to help him through this.
One of the hardest parts of all this was telling our kids initially. They said we handled it badly; we laugh about it now. How do you tell your kids their Dad has terminal cancer? We needed to prepare for the worst and hope for the best. We sold our home and moved into a smaller home Diane and the girls could keep up with on their own. We lived in an apartment for 3 months over one summer between houses. Diane changed jobs to one with a more flexible schedule to be more available for her family and increased her hours to full time in case Paul could not work at some point. The girls have been great throughout this whole process especially when COVID hit and we had to quarantine more than others which still continues now. Decisions are bad enough with the cancer card involved but then throw in COVID!
Our family and friends have been a huge source of support. All the meals, cards, texts, emails and outdoor "safe" visits have kept us going.
We still have a lot ahead of us. When Paul gets out he essentially will be "growing" a new immune system. He will have to be somewhat quarantined for about 90 days while his immune system matures. He will have to distance as much as possible from us. Treatment would normally continue for 3 years of maintenance therapy. He will continue to be immunosuppressed during this time. This plan may change based on COVID. On an exciting note, a new therapy that was developed by his oncologist just received approval for relapsed or refractory mantle cell lymphoma! More hope!