I’m the Doug Flutie of AML?!?!?!

Well, we’d like to think so 🤞🏼🙏🏼. We last left off with remission. We finished last chemo on 2.23, BM biopsy on 2.28, told y’all about remission on 3.9, and had first indication leukemia was already coming back on 3.10. We have been looking at different “gentle” chemos/trials over the last week+ to try to decide what to do. And then to remind us of its power, AML decided to get even more aggressive a couple of days ago. Our planning session was out the window. Shit or get off the pot, for sure. And no longer would a gentle chemo be an option. So here we are again. Week 20. Statically speaking C has defied the odds. Throw in all the curve balls, he’s THE SHIT. Of course I thought he was before anyway (after some initial gussying up back when we first met 👕💇🏻‍♂️). You guys and your single man shopping habits. 😳

Anyway, those who know us intimately know that C and I leave nothing to chance. It’s not in either of our nature. Everything is discussed, thought through, planned accordingly, and executed. We sound like a ton of fun. 🙄 No, we are! I swear! This is just the business of life. Now, Saturday afternoon cocktails..... let those lead us where they may.....!! We have had many hypothetical conversations over the years and have always known where we each stand regarding a multitude of topics. Illness included. We have been abundantly clear as this process has moved along that Craig wasn’t going to just keep kicking the can down the road. He reiterated this in February going into the 3rd round of chemo with the assumption it would garner little result like the first two. Don’t mistake this as faltering in hope, or “giving up the fight”. On the contrary. Know thyself. And if anyone knows EXACTLY who they are, what they want, what they expect, how they live, it’s MY person. More than anyone else I know. ❤️ And there is a very definite science with the nature of this disease that WE know all too well. So he was giving fair warning that he wouldn’t be like other people we’ve seen

here - alive by extraordinary means, oncologists and medicine masterfully manipulating the cancer cells to no end. Obviously the 3rd round was extremely challenging. He had the horrible lung/breathing issues, fungal infection (still empirical), the muscle wasting, shocking weight loss, etc. It took quite a physical toll, but with the surprise of remission (albeit with a blink and it was gone) he was willing to throw a Hail Mary of sorts for the goal of more time. Quality over quantity at this point. It is what we desperately yearn for with the pragmatism to accept the complexities of getting it. So we started a chemo regimen, without delay, on Friday night. It is a clinical trial that will be evaluated daily depending on blood labs with some tweaks here and there. It isn't backed by years of data. It is a combination of 4 different chemos (all of which he has had), and the likelihood of a 5th one added in at some point. The favorable outcomes thus far in the study speak to the synergy of the drugs in lower doses working together. His labs have indicated the cancer is taking a hit. Numbers that were rapidly elevating are trending down. However, we made it very clear that at the first sign of the treatment not working, we’d like to be discharged within a few hours. Time at home would be the most important to us. It is C’s most fervent request, strike that, demand, should we need to call it. I don’t have to elaborate on the pain that is sitting so heavily on our hearts that it hurts to breathe. The likely reality of realizing the future we so easily took for granted is dwindling down to the desperate internal plea for any gift of time. Of course we keep the window of hope that he would have a remission with this 4th round, that his body would have time to recover without the cancer returning so rapidly, that we could somehow buy palliative time to treat a terminal disease with maintenance chemo that could buy us years (we’d accept months), and then the seas would part and we find a way into transplant (he has a 90% chance of relapse post transplant). It’s quite a wish list with about 20 other factors that weren’t mentioned. As deflating as it sounds when you say it all, there truly is that little piece of us that absolutely still says, fuck it. We’ve made it this far, so why not a little further? So please understand, we aren’t throwing in the towel. He’s getting the twice daily stomach injections, the 2 IV’s of chemos, the oral chemo. He‘s eating the carefully curated calorie/protein diet I’m pushing and has gained 5-6lbs. His head is in the game because he committed to another round and he doesn’t do anything half assed. Ever.

Beyond all the other challenges, the fungal infection seems to be getting worse. Breathing has become more labored in the last 12 -16 hours. Oxygen has been increased. There is a direct correlation between steroids and his neutrophils (immune system white blood cells) dropping with chemo, that would elicit this response. The ever present juggling act. There is also a correlation with one of the chemo drugs causing this effect. Or a combination of both. A new CT of his lungs should help compare to last weeks CT to see what is going on. Fearfully, it seems it will be fungal. And that is worrisome. There have been hard conversations about what action to take if things turned quickly. We have given parameters of what extraordinary measures we would be willing to do. And to add to the stress, fear, and pain of that, it would be alone. Just the two of us. The hospital is completely locked down. No ONE is allowed in, regardless of circumstances. I’m not even allowed to exit our bedroom to go into the hallway for a cup of coffee. I haven’t left the room since Friday at 6pm. That started full quarantine time. I’ll get to that story. You can imagine the heartache for Craig’s mom who would like nothing more than to get on a plane/train/automobile and zoom to Dallas to see him. And if we do keep the fungal infection at bay, and we are seeing the cancer dramatically reduced, we could have the option of going home for the oral portion of the chemo. Immunocompromised, having to go to clinic daily for blood products, and during COVID 19. It would be risky, but we are weighing the “what ifs“. Specifically C’s desire to be home and not miss a window for quality time at home, should anything change. I am extremely fearful of regret and him not having that since it has been his most important demand. But we would be on intense lockdown. And the hospital rules are as follows: if you leave and for any reason have to be readmitted, it is alone. NO family member is allowed back in with you. The 6 of us here on the floor were given an exception after a battle. I think there are a few family members on the 12th BMT floor too. And the guidelines we had to sign off on (literally) were strict. Once you stay, you’re in your room for the duration of COVID 19 quarantine, no outside food allowed in - C’s carefully curated diet is ALL outside food, I’m allowed to coordinate a nurse going down to meet my mom outside for laundry exchange, strict bathroom rules (normally can’t share private bathroom with patient bc chemo exposure). Because we aren’t allowed to leave the room, the family bathroom is no longer an option. So there are protocols for how to use the bathroom, order in which to shower, etc. So if we do have the option (if he is well enough) to go home for the second phase of chemo, and anything changes, I can’t go back with him. If he does great and goes into remission and is willing to do another round, and COVID 19 is still happening, I can’t go back in with him. The prospect of being locked away from him with the uncertainty of his disease....I am currently incapable of fitting that in my head. And I’m equally incapable of bearing the responsibility of denying Craig his one request. So needless to say, the options aren’t great. 😔

So here is our short term prayer request since we are trying this more specific approach:

- please allow his breathing to improve, or at least plateau

- if fungal is worsening, please just hold it at bay for the 18-days left of chemo when it would naturally start to improve with a remission and neutrophil count recovery

- that this regimen works and he is able to get into another remission

- that not only for us, but for our small and connected world, COVID 19 sees containment

- that our doctors/nurses/technicians/hospital employees are adequately protected and given the resources they need to safely do their jobs ❤️

Whew - that portion of the update is over. They sure aren’t as light and jokey as they once were. But oddly enough, C and I still are. Sure, there are A LOT more tears (95% mine 🙄), but the sarcasm, joking, and laughter has not lessened by even a smidge. It is still a party in our room. A stop off to catch up with our nurse buddies, unload some stress, lob a good zinger or two at each other. On that front, absolutely nothing has changed. We still love our nurses and doctor. Daily rounds are usually filled with a lot of laughter and ribbing, regardless of the weight of the obvious topic. It’s become an HR nightmare. 😂 👊🏼

Now, the macro vs micro recap of the last week. Macro - our world have forever changed? We had no real system in place for a pandemic?? Is that even possible to conceive that we could have been this ignorant or unprepared? People are either too selfish or too naive to self police?

Micro - we are personally screwed for the foreseeable future? 😬 Medical City Dallas might be run by a team of boneheads? 🤷‍♀️ Yes to all of the above?

Wednesday evening at 6pm four messengers (staff) were sent around to each room to tell the patient and their family member that by Thursday morning at 8am the caregiver needed to leave the hospital. Permanently. Exceptions only when deemed necessary in pediatrics, labor/delivery, special needs, outpatient surgery, and end of life would be grandfathered in. Keeping in mind that our doctors were battling for their patients, advocating for their critically ill (arguably “end of life“ without life saving treatments) long term stay patients, undergoing life threatening treatments, that have to prove they have a support system to be eligible for transplant, and it was still falling on deaf corporate ears. Blanket mandates to boot everyone out without the consideration of a case by case review.

Well, that clearly wasn’t going to work for me. I understand and agree with the extreme measures to contain the virus and protect the patients, but the same people that declared these edicts also shut down the main elevators and locked the stairwells. 😳 Enough said. So I immediately apologized for shooting the messenger, but warned of my nature to be a bit of a dog with a bone. I let them know I wouldn’t be leaving by 8am the next morning without being forcibly removed, and I would immediately be calling in reinforcements. Obvious first call - lifelong friend and powerhouse Dino (ok, Dina Powell McCormick)! She rapid-fired instructions at me and immediately got on the phone with her dear Ambassador friend to reach out to a Board of Trustees member she knew. This lovely Ambassador has helped us before and we so appreciated her willingness to make a case for caregiver necessity. Dina also said we needed a letter from an attorney as a cease and desist of sorts - just to get it on record and pose the threat. Introducing our devoted friends and attorneys Blake and Ashley Evans. They had a brilliant letter making our case ready to go within a couple of hours. And it was lengthy and impressive. Off to the appropriate people it went - thanks to their super sleuth ways while seemingly being misdirected away from the correct contacts. Next up - Ed Lavandera with CNN. Same class at Jesuit and many shared mutual friends. I immediately emailed him to see if he thought the removal of critical care patient caregivers had any legs for a story. I wasn’t sure if I’d hear back from him so our dear friend Mikey G (Mike Goldenbaum) reached out to Ed, and I heard from him immediately. He was very kind and supportive, and willing to at least pitch it to producers. We decided to touch base the next day for a status update. Last up, Lesley McCaslin (Ashley Evans sister), a sports reporter who reached out to a well recognized local NBC anchor who was willing to look at the story if we were forced to leave. My guess is every other spouse or family member in the other rooms was doing the same thing b/c BMT had a 24-hour reprieve that turned into a permanent compromise. I know our doctors relentlessly argued the mental and psychological merits of having a family member with their patients. At almost 5 months of living here watching my husband bravely battle his disease, learning everything I can about it, including things that were still to come, helping with every aspect of his care that they will allow me, and advocating for the things we think are important, I’m hardly a visitor. I think I have earned the right to stay exactly where I am and should remain. I’d like for Chris Mowan, the CEO, to live for one day in any of our shoes and see if he might rethink his complete disregard for the importance of the caregiver. To both the patient, and the person that loves them.

Anyway, we are here together and that’s all that matters. ❤️ Well, clearly it’s not all, but it’s an important one.

Thinking of all of you, your families, and your health and mental well being during these very stressful times.

Hope this finds you all well,

C & A

For C: