It is amazing how quick one bad thing can seem small when something bigger comes along. RSV is bad but man, today just straight up got worse. The doctors came to our room to do their rounds. They went through their regular routine until, upon getting to Allistaire’s ANC they realized they didn’t have that number yet. The next thing I know, while I sat on the bed holding Allistaire, all of the doctors huddle around the computer in the hall – the COW to be more precise (computer on wheels). I looked up at the nurse who stood beside me, “that doesn’t look good,” I say. She almost imperceptibly nods, her eyes fixed where mine are.
Allistaire’s ANC is zero. That’s fine. She has over 1,000 blasts in her blood. What? She has NEVER had any blasts since this all began. Blasts are simply immature cells. But leukemia cells are blasts because they are immature cells that never go on to become mature. Unfortunately the microscope cannot tell us what type of blasts these are. The doctors themselves had just seen the numbers but they offered a few possibilities. The most obvious and the most concerning is that these blasts are her leukemia, which would mean that not only is she not in remission but that the cancer is on the move. Another possibility is that these blasts may have been produced by her marrow responding to her RSV infection. Lastly, the blasts could somehow be related to the expanded cord blood cells she received a week earlier. The last possibly was pretty quickly ruled out once results from the Chimera blood test were checked, revealing no presence of the expanded cord blood cells still in her blood as of one day ago. The plan is to watch her blood counts over the next several days and see what the blasts do. They are scheduling a bone marrow test for Monday or Tuesday so that they can go in and check if the blasts do not go down. Honestly, it seems both to myself and to Dr. Pollard sort of hard to imagine this is her disease. We have external evidence of her cancer cells responding the way we have hoped based on the greatly diminished size of the lymph node and the bulge on her back. Also, with the original relapse amount of blasts in her marrow being only 1.1% it just seems really surprising. It just seems crazy but it is possible. Dr. Pollard thought that if it was her disease then she would be in more pain. Last night she cried some in her sleep, something she almost never does, and today she complained once about her knees hurting and tonight she twice complained about her neck hurting. I have no idea what to make of this but it is needless to say, immensely disheartening.
As for Allistaire’s RSV, the good news is that her lungs sound really great which means the virus is still only in her sinuses and has not moved into her lungs. Pneumonia can occur when the virus moves into her lungs. They did a second nasal swab to test for the specific amount of virus present in her body. They want this baseline number to compare against the viral numbers after completion of the Ribavirin. She will have 3 two-hour doses of the anti-viral ribavirin each day for five days. Tonight her first dose was supposed to begin at 10pm, to hopefully coincide with her bed time. They gave her Benadryl an hour before hand so that she would hopefully be asleep. Allistaire was quite afraid of the “tent,” she was going to have to sleep in and certainly not at all willing to sleep with a mask on her face. It is far preferable for her to wear the mask for maximum effectiveness. After a bit of a freak out, I decided to and offered to lay next to her on the bed, rather than in the adjacent room joined by a sliding glass door. I gowned up and was ready with a mask. Fortunately we were also able to give her IV Ativan to calm her down and get her to sleep. It is now ten after 11 pm and they are putting on the mask and have just turned on the Ribavirin. It will run for two hours and then “settle,” in the room for one hour. Everything is draped in sheets that will be removed afterward. I think someone will come in and mop the floor as well. This will all be repeated at 7am this morning and again at 3pm to complete the first day.
Alas, the big blows kept coming. Sweet Dr. Pollard stopped in to talk about where things stand and what to look ahead to. Because Allistaire has RSV, she will now have to wait 3 weeks once the virus has cleared her body before she would be allowed to have a transplant. I think that she has to be a-symptomatic and test negative for the virus for it to be considered as cleared. I have no idea how long this could take but clearly at least 5 days for the Ribavirin treatment. RSV can be fatal in transplant. As a result of this delay, it is now likely that Allistaire will have to have another round of chemo regardless if she were to be in remission.
As you can imagine it was a rough day and it seemed that people did not stop barging in the room either in person or by phone. An infectious disease doctor, I did not know to expect, pops his head in and asks if it’s a good time. My face all red and my eyes full of tears, I turn to face him and tell him, “No, it is not a good time.” But then again, I don’t have the luxury of a good time to cry in this place that offers absolutely no privacy. So in he comes. I am so thankful for the amazing number of people who come together to care for my beloved. Sometimes, though, it feels that you are being barraged, that shrapnel just keeps raining down.
I have sought to truly face the possibility of Allistaire’s death. I have sought God to help me release my grip on her and hold her open-handed to Him. It is not hard for me to believe God can heal her. That belief does not stretch my faith. The straining and stretching and wrestling and struggle of my faith is to believe in a God who is good and may choose not to heal her – to see a God who would withhold His healing hand as simultaneously perfectly and utterly good. I cannot possibly know if this is true, but it seems like it would be easier if she were just suddenly taken. Rather, it seems I must yield tiny bit by tiny bit, day after day, each hour and minute by minute. It feels excruciating like having a vice slowly but steadily bearing down on you, splitting and severing your flesh.
This battle I find myself in the midst of is truly not a battle against flesh and blood. I am constantly lulled and drawn into perceiving it this way, however. How can I not feel that my life hangs as I await the black little numbers on the page, telling me her blood counts, like tea leaves predicting my fate? You know what song Solveig learned when she was little in Bible Study Fellowship? “Good morning God. This is your day. I am your child. Show me your way.” This really is the day that the Lord has made. He has crafted this day. He is the sculptor pressing the clay this way and pulling it there. Right now it looks like no masterpiece I can tell you that. Today it looks more like a mess, like a hopeless screw up. As one who loves art projects though, it seems there is always a point in the process where it looks like what your hands are making is just not going to work out – it cannot possibly bear out the beauty of what you had envisioned. It sometimes takes quite a while to turn out of that low place, but most of the time you eventually get the joy of standing back, looking on what you have done with satisfaction and joy.
What is the Lord up to? I cannot possibly tell you. What I have told Him is, ah God…this really doesn’t seem like a good idea, not sure how this helps you look like the good guy. So I wait. My soul waits. My soul waits for the Lord. I sit here in this day the Lord has created and this night as my body is tired, my head pounds, my shoulder is tight and my heart faint. I wait for the Lord. I wait for Him to call the stars out, each by name. I watch this dark night sky for each star to appear. I watch as a constellation starts to take form. The night darkens and the stars come out, one by one, filling in the lines and creating semblance of an image. Each day goes by; each crafted by God. Slowly the points of the image piece together, achingly slow, painfully slow the image takes shape. Have you ever looked at the picture drawn of Orion the Hunter? You look at the picture and you wonder how those few stars are supposed to depict such a detailed warrior. It seems to me the picture, the image that God is crafting requires infinitely more points of light that we alone will ever see. From our vantage point, there is no order, there is no cohesive plan, much less staggering beauty. We see the handful of stars that supposedly give form to the warrior Orion and we hang our heads, we shake our heads and cynically think it a bit far-fetched to think those stars show a warrior. What is the Lord up to? What beauty is He creating? I cannot possibly tell you. From here where I stand, there are just a few scattered stars. But wowzers is that darkness big – that night sky vast – think of all those points of light – think of the scale of what God might be up to. I have no way to stand back far enough to take in the full view. I am finite. He is infinite. He works with a hundred quadrillion points of light, for one tiny detail in His beautiful creation upon which He is still painstakingly working on.
My soul waits.