1 Year + 156
1 Year +156
We got Tate dropped off at camp. After an eternity going through meds, they keep the drop off quick. This is actually a positive as the emotions were running high. Parents don’t go into the cabin to help make beds, etc. But there’s an RN, a CNA, and two counselors for about 7 teens in Tate’s group. She will be well supported. I’m already missing her and wondering what she is doing. I’m praying she has an amazing week. Right when we rolled up to her cabin, we saw a familiar face. Sarah, our social worker from BMT. I love that she gets to see just how far Tate has come.
While in Montana, we received some tough news. Final pathology came back on Friday. Tate has chronic kidney disease. If I’m being honest, this has rocked my world and brought more tear filled days than almost anything thus far. The reality is that currently, her kidneys are still adequately doing their job. So the grief associated isn’t due to an acute issue, but rather what this represents. It’s not clear why this happened and even the path it’s taking. As evidenced by the multiple reads on the biopsy, and a two month wait, the issues in her kidneys aren’t textbook. This shouldn’t be happening after transplant and definitely not this quickly. They do think it is lupus (like) related. The fear is that this is just the beginning. As pain progresses, we’re starting to see the lupus sun sensitivity return. Her disease process is clearly worsening. It’s truly Devastating after everything she’s already fought through. This latest news has us having to dig deeper to hang onto Hope.
Chronic kidney disease isn’t curable. Instead, Tate’s Dr’s will work to keep it under control to try to slow continuing damage. How? With an anti rejection/immunosuppressant medication that she’s been on, and didn’t work pre transplant. Its a big gun and comes with a stack of papers to sign off on. None of these meds are without risk but are reserved for life and organ preservation. It’s frustrating and concerning and we are sad. We’ve already been through all the meds with the exception of continuous chemo. That will be reserved for when nothing else works. So in the meantime, we try the old meds again.