Gene here again, writing for Jewel, our children, and myself.
At last writing Jewel had a cancer lesion in her brain that had bled and caused a seizure. It is still leaking a little blood. More on that later. Since the seizure she has had numerous CT scans and MRI scans. The CT scan showed some changes adjacent to the primary cancer tumor in her esophagus and an endoscopy was ordered. The endoscopy showed that the tumor was growing again; the immunotherapy that had been holding the cancer in check in her torso is no longer fully effective.
Since Jewel’s legs were not responding well to diuretics it made sense to leave rehab. But she still didn’t have the strength to climb the stairs leading to the main floor of the house so we installed a stairlift and endeavored to extricate her from rehab. We huffed and we puffed and were able to withdraw on Thursday, May 1. Jewel was happy to be home and Lucas and Carolina arrived late to spend time with us. Our goal was to complete a course of targeted radiation on the lesion in the brain as soon as possible to preclude further complications from bleeding.
Then on May 2 Jewel called her general practitioner, trying to get someone in the healthcare system to diagnose and remedy the swelling in her legs. She talked at length with a triage nurse who was very thorough. (Yay nurses!) The nurse made an appointment for her at urgent care and we arrived just before noon. At urgent care Jewel was seen by a nurse practitioner who sent us urgently to the ER. The ER was completely empty when we arrived and we breezed in. A few hours later they diagnosed her with deep vein thrombosis (DVT) and “many” blood clots.
Fortunately, she already had an IVC filter installed to catch blood clots. But there isn’t much else they can do for her. The normal treatment is blood thinners to help break up blood clots. But that treatment could open up more bleeding from the cancer lesion in her brain, so blood thinners were ruled out. So the hospital gave her Lasix to remove some of the fluid in her legs, wrapped them to keep the swelling down, and monitored her for a day or so before releasing her on Monday, May 5.
On Tuesday the family spoke with her oncologist. He expressed concern that attempting to continue ongoing treatments to address the cancer in the brain and torso would be difficult for Jewel’s body to handle, given her weakened state from the blood clots. His recommendation was to complete the series of targeted radiation treatments and begin hospice. The events of the past month are, of course, disappointing. This is difficult to report and, we’re sure, hard for you, dear friends, to hear. But we are accepting that recommendation and planning accordingly. Jewel will have radiation treatments on Thursday (tomorrow), Friday, and Monday. Hospice will begin Tuesday, May 13 or as soon as possible thereafter.
Dear family and friends, we continue to be grateful for your caring in so many ways - cards, flowers, gifts, time, food, help, aid, and prayers.
Love to all,
Jewel, Gene, Caitlin, Lucas
I intended to write for Jewel long ago something like the lyrics she wrote to different songs that she presented at volunteer recognition events. Words don't come, not like she used to compose! Sojourning means that you're traveling somewhere, not staying. We're thankful for all the journey that you've been on with us all for however long we've individually been sharing the road with you, Jewel. Thank you for the window you've opened onto your sojourn. It helps us pray.
Thank you for sharing this sad news. Jewel is such a special person — a multiplier of God’s blessings. Meeting her has changed my life for the better, and surely she has changed many others too. May you all find strength and comfort as you continue on this journey.