The past few weeks flew by as we toured Michigan's upper peninsula. We have never taken two consecutive weeks to vacation before, and the break from the norm was much needed. However, by the end we were all ready to be home, which means we were gone the perfect amount of time. We fit so many things into our trip; boat tours around Pictured Rocks, waterfall hikes, historical towns, rock collecting, and sitting on the shores of Lake Superior. We biked and hiked and played corn hole and slept under a canvas roof and and sat around the fire with dear friends each night.
Somewhere during our trip, Jude got a nasty bug bite on his head. By the time he showed me, the bite wound had mostly scabbed over, but Jude had two visible and palpable lymph nodes swollen in his neck. If you remember, Isaac's one and only diagnosis of his leukemia was swollen lymph nodes. Having felt both normal and cancerous lymph nodes, I knew that Jude's felt normal, that there was a reason that they would have swollen, and that it was likely a healthy response of his immune system. However, each time he turned his head to the side and I saw the slight round bulge in his neck, panic would rise in my chest. My nervous system felt out of my control as I lost sleep, mentally going all the way down the road of "what if's". PTSD doesn't care to warn you when it is going to flare up. I wonder if I'll ever go back to a more carefree motherhood, one without health panic. On the other hand, this experience has forced me to essentially face my demons - lymph nodes now one of my biggest triggers - and still come out breathing on the other side. Exposure therapy, is it? Facing your fears over and over until you realize that you might actually end up okay. At least for now.
This past Tuesday was Isaac's monthly hospital appointment and it went flawlessly. They drew labs, gave him a check up, flushed his port, and we were on our way. I asked the Nurse Practitioner who we often see about Jude's flared lymph nodes, and her lack of concern (unless they were hard and huge and immovable and formed a chain... all symptoms Isaac had) allowed me to breathe more deeply once again. She told me that in her 45 years in oncology, she'd have to be hard pressed to recall a pair of siblings who both got leukemia. Deep breaths again. Jude still has an appointment tomorrow with our primary care doctor, just so professional hands can feel his neck and I can cover all of my "what if" bases. But I have stopped obsessing, for now.
Onto Isaac.... his labs look amazing, although his ANC is still higher than we like. This means they may need to increase chemo again, but since he has grown he is not above 100% dosing quite yet. His bone marrow recovers quickly from chemo, which I believe is overall a good thing, but also needs to be controlled to ensure that it remains suppressed enough to discourage any leukemic cells from forming. One surprising finding we had was that Isaac's liver numbers are in nearly normal range (AST is normal and ALT is only slightly elevated)! This is a tremendous drop from the 5x the max numbers we were seeing not long ago. Milk thistle seems to be helping, but I was very surprised since we were far from perfect at giving this in the morning while we were camping (don't worry - never missed a chemo dose). The only explanation I can find is the camping life the past two weeks. Constantly outdoors, in the woods, in the lake, being active. His body apparently liked that. All along, I have viewed our time outdoors and in nature as a vital part of Isaac's healing and all of our health. Perhaps just as valuable as the pills he swallows each day.
Finally, Isaac turns 9 on the 27th!! You all might remember our covid/cancer drive-by birthday parade last year. It was incredible and we all felt so loved and cared for by our dear friends who showed up. If you want to send Isaac a birthday card, I'm sure he would feel very loved!
As of today, Isaac has 266 days left of treatment, with 532 behind us. And along with the rest of you, we don't know what the future holds. It likely involves therapy, healing, hoping, trusting. We hope and pray that the hard parts grow us and the connections soften us. Two-thirds of the way through our chemo journey, but I know that we will continue to live in the "after" of a moment that changed our lives. I can only hope and pray for fruit from this experience amongst all that tried to shut us down.
