Post Transplant Day 357
+357
This has been a tough week. Pain continues to increase and spread along with fatigue. Rheumatology visit led to labs confirming high systemic inflammation. The highest she’s ever had. Not good post transplant. The ”best” reason for this would be infection. We don’t think that’s what’s going on. Pain Dr. Appt suggested admitting to manage pain. Tate rejected that until absolutely necessary. Some days are manageable with increased pain meds and lots of sleep. Other mornings require a walker to get to the bathroom and lots of tears. An increase in pain meds, an eventual switch to a new one and lots of discussion about an implantable pain pump with a catheter that goes directly into the spine. Sounds scary but she’s getting close to maxing out oral dosing.
Further testing will hopefully lead us to the source of the pain before we land there. Spinal tap, joint aspirations and full body scans coming up. Labs are always a given.
A 7 hour neuropsych post BMT eval today highlighted just how deeply years of chronic illness, brain and body inflammation and medications and a bone marrow transplant affect a developing young person. It’s defeating and sad and comes with anger and frustration too. Surviving isn’t “free.” The price is higher than most can understand.
We’ve been feeling a lot of loss the past couple months. For every “The girls look so good,” I feel warmth and gratitude followed by a hard squeeze in my chest as I know what truly lies under the surface. We’re so tired. So emotionally defeated. We’re so ready for something really positive and lasting. Some days I struggle to highlight the positives. I know they’re there. And I’m grateful. But today is a hard day. A hard week.
Keep Lilly in your prayers who is struggling with her GJ feeding tube this week.