Days after Day +100

I know many have waited for me to post about tests results. Well, I don’t even have words. In fact, doctors don’t either. But Monday morning found us back in ER. Results mostly have been great. So why then did his oxygen once drop significantly? Why was fluid around lungs again?

No answers yet. But this picture explains so well what we hang onto. Faith. Trusting God in the midst of these life altering events. He alone has the answers.

So to the original question – what were test results? That’s complicated. On May 18th he had the day 90 tests run by Oschner to checking and see if transplant worked. The next day we were in ER because of lack of oxygen and a series of new tests for all sorts of possibilities. So here’s a breakdown.

Bone marrow biopsy – all clear of amyloid!

Blood tests show transplant plant was effective as light chain numbers have dropped

Fluid has been in his lungs since Dec 2019. Until amyloid was found in his eyes a year ago this month, no one could figure out what the fluid was or where it was from. The transplant puts good stem cells in him. Those cells are to multiply, take over and push out defective cells that produce amyloid. It’s not like a cancer in that you can easily see a tumor and get a plan to tackle it. It’s a stem cell disorder. Amyloid protein can only be found by specific tests.

Last week they questioned if amyloidosis had actually been a secondary issue covering up a primary. This led to tests for lymphoma and other diseases. Viruses, infections, funguses— all are being looked for. So far – negative on all accounts!

So why, after being sent home on oxygen, another trip to ER, a day in ICU on high oxygen, and now two days in regular room? And more tests? We have fought this hidden enemy a long time. We are tired. But we trust God to make sense of it all.

It’s a process. Tests will still find amyloid protein in lungs because it takes time for new cells to clean out the old. So we are speaking “come to order”! Because giving up is not an option!

No matter the process we lean into Him. He holds us still