I’ve become an expert on rollin with the punches. Shit happens big and small and I move on and don’t dwell on it. A lot of people that know me would say I sometimes think more like a man. If that irritates you, then well, have a nice day. It is who I am. I find much humor in pretty much anything. I love hard, fiercely protect those I care about, shoot it straight, listen empathetically, loyal to a fault, and can ALWAYS find laughter. What you see, receive, and feel from me, is me.

Since the very end of August I have not been able to do that. I 100% lost myself in anxiety and worry. September 1st began a torturous mindfuck game of what-ifs that have completely paralyzed me and my soul. Luke’s numbers began to take a nose-dive and didn’t show any signs of stabilizing, until 2 days ago. When they first started to plummet, Luke was asymptomatic. Then all sorts of symptoms began, and are still going. Tuesday September 5, Luke had yet another bone marrow biopsy and 3485858 tests ran. This triggered alllllll sorts of feelings in me. Stuff I didn’t even know was there. The shattered feeling of when Luke was first diagnosed came roaring back inside me. Like a fight or flight, but I have no fight left in me. Docs were concerned about 2 main things: relapse and leukemia being back OR if his body was rejecting the transplant. Many days of pure hell in waiting for these results went by. Slowly, from all the labs all over the US, tests came in and show NO cancer at all and his graft/transplant is 100% in tact. Phew. Except, his numbers were still dropping and his symptoms not getting any better. He has been tested for HHV6, CMV, HIV, HEPC, HEPB, 867-5309, COOMBS, EBV, blah blah blah. They have checked every possible virus, bacteria, fungus, flu, Covid, transplant complications, etc. I think he has had maybe 9 covid tests in the last 2 weeks. His veins in his arms are wrecked due to so many pokes. His throat and nose has been swabbed, they could do it in his sleep and he wouldn’t feel a thing. Not exactly what you want for your child. None of this. He has been through ENOUGH! We have been back and forth to Children’s many more times spending many days there. All tests, some still pending, have been negative, until 2 days ago. Docs decided to send Luke for a chest x-ray. His lungs have been clear but one of his symptoms is massive shortness of breath. The x-ray shows pneumonia. We still don’t know what kind of pneumonia (viral, fungal, bacterial) and may never know. He is on some medicine to treat it but not much because it will further deplete his immune system. Fucking hamster wheel.

Speaking of hamster wheels…we were getting ready to attempt to get out of the house yesterday evening and try to find something Luke would want to eat (aka sushi) and I had felt my ears kind of clogged and a small tickle in my throat. I decided to take a Covid test. Normally I don’t think a thing of a sniffle or whatevs, but I have to be ultra aware of it right now. I am positive. I did what every socially conscience mother would do. I grabbed a bag of chips and a drink and layed on the middle of my bedroom floor to figure out what to do next and sent my mom and boys out for sushi. Vodka is an antiseptic, right? Luke ate dinner. Amen.

I was told to immediately isolate myself from Luke (which makes me laugh). I have been in the basement since, minus a few trips for snacks upstairs and a walk around the neighborhood. My UPS man, who is the greatest, will be coming to visit more frequently with the amount of random stuff I have purchased online the last 24 hours. No, my boys do not resemble my UPS man at all. I’m playing pinball and Miss Pac Man a lot. Feels like I have a cold. I’m still worried sick about my boy but I’ve picked myself up again and will KEEP FUCKING GOING. We continue to wait for more results and let his body do its job. I think this is the first “test” his new immune system has had, and it is kickin’ it into high gear. I think it honestly, could be covid that he just isn’t testing positive for. I know my family and friends continue to be my rocks. My mom continues to be the angel she is keeping this household turnin while I am down. My Mason is crankin’ through school and work. He continues to stay positive and love his mama so much. My brother and sis-in-law are nothing short of fantastic.

Huckets of Bamster Wheels,

Soooz