But today was very close to the top 10 longest days ever during this battle. Immensely frustrating.

Luke woke up with a fever on Wednesday morning. Not a high fever but nonetheless, a fever. With AML, chemo, immunocompromised state, transplant, fucking cancer in general, any kind of fever sounds the alarms. I called BMT, BMT called me, BMT called Dr. Kohler, BMT called me again, round and round. It was decided that we would not treat Luke’s fever with any medication in case it masked the fever increasing which could hide a central line infection. We would wait and see if it got better on its own or if it went higher, we would bring him in. But if it spikes after clinic hours, we would have to go straight to the ER. (The last place anyone awaiting a transplant should be, is the ER). I was leaving in 2.5 hours to go to the hospital for my re-do of tests since my old tests were not within the correct window. I mentioned just bringing him with me…Anywho, Luke’s fever went down on it’s own, I spent the afternoon doing my tests,labs, a physical, and resigning consents. Luke stayed home, thankfully.

Today, which has been scheduled since last Monday, we went to the hospital at 8:30 am to get the clearance to check in this coming Monday. Luke has been feeling MUCH better. Throat fine, congestion better, no fever, just a bit of residual cough.

Vitals, cap change, dressing change, swab nose for covid, flu, RSV, and supposed to be entire respiratory panel. One side of Luke’s broviac is not returning blood-aka not working. Luke has daily line care that includes flushing with heparin and saline to avoid infection and keep lines working properly. They get blood to return on his other line so they run his CBC on it and try all the tricks to get the other line going. If this line doesn’t end up working, it would mean another surgery for Luke in the OR (unlike a procedure with just propofol- ha, “just”). They get a larger dose of heparin and try again. Not working. They order a special anticoagulant they will insert in this lumen and will have to let it sit for an hour, and then try again. In the meantime, his evaluation with a BMT PA is complete, but they want a BMT MD to check him out. So, Dr. Keating is on this week in clinic as the BMT provider. She is one that we actually had not met yet. She evaluates Luke, messages with Dr. Kohler, and they want to do a CT scan. Nurse comes back in to try and get his line working after it has been sitting with new medicine and it doesn’t work. We give it another 30 minutes sitting because a tiny bit of pink comes back into syringe- that is a good sign. BMT PA comes back in while she is on hold with Children’s Hospital RAVE. We can’t get a CT until RAVE approves it. Oh, but CT may not be able to see you today. Do you want to go home and come back this weekend? NOPE. No we do not. Do you want to go have lunch? Nope. No, we do not.

SIDEBAR- We were told this wasn’t related to insurance at all, it was related to providers being able to order high cost tests. I had no idea at the time WTF RAVE is, but as of writing this and doing research, I now understand. RAVE stands for referral, authorization, verification, eligibility. The goal of RAVE is to reduce the overall number of patient eligibility, no referral/authorization, non-covered services, late/no notification, wrong insurance billed and medically necessary denials The Children’s Hospital receives, and better align resources, training, education, and information to a single point of accountability within the organization.  AKA reduce overall denied dollars the hospital receives and has to write-off. It has everything to do with insurance. A hospital, even a teaching not-for-profit hospital, is a business. I’ll spare the rest of my rant on that topic.

Nurse comes in with ANOTHER nose swab. They didn’t run the entire panel of respiratory tests before, so #687 nose swabs for my boy. Good news, after the last 30 minutes of waiting, his lumen is working. AMEN. PHEW. The thought of Luke having to go back to the OR for his broviac had my insides churning and heart palpitating. I had brought a project with me to do while we sat, thank goodness. I didn’t have to just sit with the thoughts in my head. Yet, I just sat there and watched Luke and couldn’t find a way or words to make this any better for him. All I could say was, “I’m sorry Luke.” DAMNIT!

Our nurses and PA today are the best. They could not have been any kinder. The ball dropped somewhere…

Now its 1:45 PM and a CT appointment pops up on our schedule for 2:30 PM. We gather our things and hope to see someone in the hallway and confirm CT is approved before we head to Radiology department. I walk by their workroom and wave and say “we are off to CT!” They say, “WAIT, we had to make an appointment with CT just to start the process of getting RAVE to approve it.” We all conclude that we will just go ahead and go to radiology and wait. We check in at CT. Test results pop up in our chart. I see that Luke tests positive (on the respiratory panel they ran 4 hours late) for parainfluenza. Flu #3. I start heading back upstairs to the clinic to discuss what this could mean, and have Luke stay in Radiology for CT. Immediately our BMT coordinator calls us and tells us that we can go ahead with the CT, we do not need our insurance approval. I had made it to the elevator doors. HUH? I said “well he just tested positive for flu. So, should we still do a CT now?” Common sense tells me they won’t green light transplant with a positive flu, so why would we want to expose Luke to more radiation today knowing, HIGHLY likely they would have him repeat it yet again. Our coordinator says “oh he did test positive? Oh, I didn’t know that. YES, go ahead with CT. Wait…wait…let me call you back in 2 minutes.”

CT was cx.

“So, do we go home? Do we need to come back up to clinic? Should we wait a bit longer? We have waited this long…” Coordinator says, “Let me call you back in 2 minutes.”

“You can go home. I will call you later this evening with a plan but transplant will be delayed, we just don’t know what that looks like.”

I felt frustrated and defeated. The worst was knowing what Luke was feeling like. I could see it in his eyes. A waste of a day. Another delay. Frustrations mounting while we live life “on hold.” I know Luke is going to get through this and be cured. I know he is going to be more than fine, live a long healthy life, have a family of his own, and HAVE SOME FUN, a LOT OF FUN along the way. But right now sucks. It is a constant battle physically, spiritually, emotionally, and intellectually. It takes so much coordinating, thought, accomodations, pivoting, and planning. And, you can’t plan cancer. I hate the word pivot. I hate making so many decisions and directing so many ships. (I know God is the director but a Mama Bear isn’t far behind). I am George Michaeling and gotta have faith. I believe and so does Luke.

We drive home with a detour at Slim Chickens drive-thru and get home just in time to say hi, from afar, to Mas before he leaves to go to Matt, Kimberly, & posse house for the night. That wasn’t the plan but vacating our home with Luke having a positive flu test, Mason coming home from school (Mas is so good, we have distanced and he showers immediately when he gets home, to keep Luke and I as safe as possible) I thought was the best idea until we maybe figured out what this all means. Our Ant Ancy flew in today too to help us all too, thank goodness! Ant Ancy Medicine is ALMOST as good as Morgan Medicine. I sent her to Casa Van Auken as well.

I get a call from BMT coordinator and basically says, don’t come on Monday (to check-in) as transplant will be delayed another week. We don’t know after that what it all looks like. Dr. Winters (Luke’s angel head ONC doc) and Dr. Kohler (Luke’s soon to be angel transplant doc) are going to put their heads together and figure out what is best moving forward. There is discussion that Luke may have to do some maintenance chemo during this time since we have had to delay transplant. I will repeat, I have 100% complete trust and confidence in Luke’s team. So this may not make much sense. I will HURT someone if Luke has to do maintenance chemo while waiting.  HURT. I will throw my body over his and protect him like I used to throw my body when I was younger having a temper tantrum. I promise I will protect him any way I have to. So now, we wait. GG, Ant Ancy, and Mas will head back over in the morning. We will stay safe and practice safe isolation.

I very tactfully and empathetically discuss the frustration Luke and I both have with today’s clusterfuck. I did use the word clusterfuck, but in a way that is not blameful or angry but very frustrated. Here are a few of the questions I ask:

“How can we prevent a day like today happening again? Luke came in to be cleared yet tests were not ordered, cleared, correctly planned for, to adequately clear Luke.”

“Last week you said we have a buffer of time built in for delays like this. Now we have another delay, what is our cut off time for that buffer?”

“We spent Luke’s entire day going around and around, in the hospital, where we pretty much live anyways. When we come back next week for a check-up, whenever, how can this not be repeated?”

All that water I drank for my lab tests earlier this week, is turning into wine tonight.

We will persevere. God has us covered. Thanks for keeping up.

Buckets of Cheers tonight,

Suz