I have now received the second vaccine dose! You might think that was simple, since I had already gotten my first dose, but it has proven to be anything but and has actually added a lot to my stress this week. For various reasons the second dose of the Moderna vaccine has been very hard to come by here in Utah County, and the health department is booked out for several weeks. I’ve been desperate to get my second dose before Kendall might be coming home. I have made numerous calls, regularly checked the website for appointment times (sometimes hourly), and wasn’t having any luck.
Throughout this leukemia experience I have needed to wear a lot of hats and there have often been many important things competing for my time and attention. I am so grateful for a prophet’s counsel to learn how to “Hear Him,” because I have often relied on promptings when I decide where to focus my time and attention that day or that moment (and I pray for guidance with that every day). Because I can’t be home with my kids and at the hospital with Kendall at the same time. I can’t be taking care of business items like health insurance applications or disability paperwork while I need to focused on my actual business and doing speech therapy. Self care vs. others’ needs. And on and on, you get the idea. I’ve learned to recognize the sense of urgency I will feel about attending to something as the Holy Ghost’s influence, and then I will act and focus on just that. This morning I had planned to go to the hospital first thing, but I woke feeling an urgency to get things taken care of with my vaccination.
I went to a clinic in Provo and spoke with the workers there, but they only had Pfizer vaccines available. Multiple phone calls were only able to secure me an appointment several weeks away. I finally decided to try going down to the health department in person and see if there was anything that could be done. I was willing to wait there all day if needed, in case someone didn’t show up for their appointment and there might be an extra dose. I won’t go into all the details, but the director ended up hearing my story, and approved me to get the vaccine right then. I got to skip the lines and go right through. Afterward I actually sat in my car and sobbed. It really felt like a miracle after so many closed doors. (And so nice to get it on a Friday when I don’t have work for the next several days.)
I do have a little news from when I was at the hospital today. First the good news: Kendall’s white blood cell count moved up a little today! He has stayed steadily at 0.03 this whole time, but today for the first time he moved up to 0.05. Not enough of a change to affect how he feels (and not yet evidence of engraftment), but our first real, measurable progress! When I spoke with the doctor he said he hopes to see signs of engraftment in the next four days or so. He also reiterated that half-match allogenic transplants are the very hardest ones on patients. As alarming as Kendall’s condition is, it’s certainly can happen with these types of transplant.
On the not so good front: Kendall’s pain was a lot worse today, and the doctors are baffled as to the cause. He is on a schedule of heavy pain medication, and he has a lidocanine patch for the sight. On an unrelated note (at least the doctors consider it unrelated), Kendall’s scans have shown that he has an enlarged liver and spleen, and his bilirubin levels are steadily rising showing problems with his liver function. There are some indications that Kendall might have a disease called VOD/SOS (veno-occlusive disease or sinusoidal obstruction syndrome) of the liver. Would you be surprised if I told you that it is extremely rare? It can happen, though, as a side effect of the chemo they gave him during this hospitalization. Kendall is scheduled for a liver biopsy on Tuesday (where they go in through a vein in his neck and then down to the liver – ouch). If Kendall’s labs continue to worsen between now and then, however, they will go ahead and start treating him for the disease. Mild VOD/SOS can be treated, but it would mean several more weeks in the hospital.
So, some wins and some concerns from today. Are you curious about the picture I included for this post? (Because I’m sure everyone who reads these updates MUST be interested in the minutia of our lives…..ha!) Our children have all been enrolled in a Chinese immersion program in school, and one fun tradition we have adopted has been celebrating Chinese New Year each year as a family. For obvious reasons I wasn’t going to be making any elaborate Chinese dinners this year, but some friends of mine from college (and a few from my neighborhood) made sure we had a Chinese feast and fun decorations (and even the traditional red envelopes!) to celebrate tonight. My kids have been looking forward to tonight all week.
