COVID19 and Leukemia

Its mid April and I haven’t written for so long, once again. Billy was in the hospital a couple of times in December, then continuously from January 1 until February 18, 2020, and was fighting for his life more than once. He started at Union Hospital, went there with a fever. His temp went up to 105 degrees one night, and I was terrified. They put him on a cooling blanket, and he was not happy. Billy hates to get the chills, and he did get the chills that night. But he made it through. Then he got C Diff, but of course, we didn’t know that at first. He didn’t get out of bed except to go to the bathroom for about 3 days. He wanted to wait to get better, but when we told the oncologist, he said we needed to get to the hospital. Its all jumbled up in my mind now, what he had when. While at Union, after being admitted on the 1st, he got weaker and weaker, and was having a hard time even talking. The doctors said he had fluid on his heart. The heart doctor in Terre Haute wouldn’t drain the fluid off of his heart because his platelets were so low. Finally, on Jan. 21, Billy was feeling so awful he began to say good byes to everyone. Both his sisters were out here. They had been coming pretty regularly since he started getting sick all the time, for support and to help. He talked to Joe and Joanna on the phone and Jason came by. It was flu season, so no children were allowed in the hospital, and visitors were limited to 2 people at a time. The infectious disease doctor, Dr. Jaffri, asked Dr. Gallardo, the oncologist, if Billy should be transported to Franciscan Health were his other oncologist and transplant doctor, Dr. Akard, practices. Jaffri thought they could care for him better there. Thank God that happened. When Billy got to Franciscan Health, he was on death’s door, and he really could have passed that night of the 21st. I stayed with him all that night, praying and holding his hand. I kept thinking, if he can just get through tonight, and get to Indy tomorrow, he is going to be okay. On the 22nd, when he got to Franciscan by ambulance, they immediately did an echocardiagram in his room, and he was taken to surgery to have a tube put in his chest to drain 2/3 of a quart of fluid from around his heart. His heart was so compressed, that he was in AFib, and would continue to be so for quite some time. After that tube came out a couple of days later, he got bi-lateral chest tubes in his back to drain all the fluid from around his lungs. He started to be able to talk again and was so much better. I took several days, but he got lighter by 22 pounds, all fluid around his heart, in his legs, hands, (ahem, scrotum, ahem), feet, everywhere. The tubes were painful, and I guess its really awful, but he was a champ and never complained. I and one or both of his sisters stayed in hotels in Indy to be close by, and one of us was always with him, or one of the kids, the entire time he was in the hospital. I can’t say enough good things about my kids at this point. They made sure to see their dad once a week, or, in Joanna’s case, once every other week, and they called all the time. And Billy’s sisters went above and beyond! They were there for us 100%, 24/7. After the fluid drained, he still had some problems. His hands shook so bad he could hardly navigate his phone. His memory was terrible, and it was important for one of us to be in the room when the doctors came, because he couldn’t remember anything they said. When he is ill, his vision is very bad. He would wake up in the middle of the night terrified because he didn’t know where he was. Jason printed pictures and put a big green poster on the wall across from his bed that said, “You are in the ICU. Your vitals are good. See you tomorrow”. That sign followed him all throughout the hospital, the ICU getting changed depending on what ward he was in. I think in all, he was in at least 4 different wards before getting discharged, the last ward was the inpatient rehab. We continued adding pictures of all the family members, so he would have a point of reference when he woke up.

He had a bone marrow biopsy on Jan. 28. When the results came back, we were astonished. His marrow had no sign of MDS or Leukemia. He had some Chronic Lymphocytic Lymphoma, or CLL, which had never showed up before. Our prayers had been answered!! He was cured!!! So many people had been praying for him for so long, and not only did he not die, but he was cured. We were on cloud 9.

He was very, very weak when he finally got released, but so ready to be home! On Feb 18, 2020, I finally got to drive him home. The days home were good. He very slowly got stronger. He saw the doctor once a week for blood work and to keep an eye on him. One week he would see Gallardo here in town, the next week he would see someone at the Indiana Blood and Bone Marrow Transplant office in Indy. He had some transfusions, but was getting better all the time. His heart stopped being in AFib and was in regular rhythm. His lungs stayed clear. It was all so good.

Then it was time to talk transplant. Of course, I didn’t want him to have a transplant because I thought he was cured. Plus there was the COVID 19 pandemic, which is a terrible virus that spreads so quickly that everyone has been ordered to “shelter in place”, or stay home – period – since 25th of March in Indiana, other States sooner. I had been working at home since 3/20/20. So, on March 31 they did the transplant work up, which included a bone marrow biopsy. Two days later, Dr. Akard called with the shocking news. Billy’s blasts were up to 40%. He was now in full blown Acute Myeloid Leukemia. Everything had changed. And, to top it all off, we were in the middle of the COVID 19 pandemic, and everything was crazy. What happened, God? I thought you cured Billy. I believe even the doctors thought he was cured. Something amazing had happened – A MIRACLE had occurred. But, as we had said before, Billy and I said, Well, we are going to see what God has for us. We are going to walk the path he has laid out for us, and trust Him and know that He will be with us.

So Billy’s plan of action, or treatment, was vastly different now. The transplant had to be put on hold. Chemo had to be started asap, without delay. AML is terrible, I can’t even let my mind think about it. God is in control. Anyway, the drug the doctors chose for him is Vyxeos, two standard chemo drugs in a liposome, especially created to treat MDS patients whose disease had progressed to AML. The liposome that the drugs are suspended in is liked more by leukemia cells than regular cells, and they want to get to the liposome first, which is what we want, too. So the side effects are less bad: you don’t lose your hair, your mouth, stomach and intestinal track isn’t attacked so badly. But the drug really makes the blood counts drop, seriously drop. So the doctor said the risk of infection and bleeding are high. He was especially concerned about infection for Billy, because that seems to be his Achilles heel. So Billy had chemo in Indy on M, W & F 4/6, 4/8 & 4/10/20. He felt bad, and had the same stomach issues he had before, like feeling full and feeling sick when he eats. But overall, he did pretty well. Each trip to the doctor his blood counts went down a little more. But his hemoglobin was staying up pretty well, so he didn’t need blood. In fact, he hadn’t needed blood since March 3, which was a new record. His white cells dropped from .74 to .7 to .48, then .29. It was pretty scary. His platelets were dropping, too. We stayed in, I wiped all the groceries I got down with cleaner before bringing them into the kitchen, I didn’t go the store but had groceries put in the back of my car. We tried. But on Tuesday 4/14, Billy woke with chest pains. The pains went away after he took his morning meds, some of which are heart meds. Then he started running a low grade fever. And the fever climbed a bit each hour. When it reached the tipping point, 100.4, we called the doctor. The office said to wait until it reached it 101 and call them back and they’d have him direct-admitted into Franciscan Health. His temp spiked suddenly at 101.5, and we called and left for Indy at about 7:00 p.m.

Because of COVID 19, there are absolutely no visitors allowed in the hospital. But I got to go up with him to the transplant unit and stay with him through the admission process. I have seen the admissions process two ways now. Incredibly fast, with a nurse running, punching keys and barking questions in rapid-fire fashion, like when he first went to Franciscan. This time, the nurse went slowly, and asked questions in a gentle, relaxed manner. She was gifting us more time together. She said she was rusty at admitting, that usually the day nurses did the admitting. She said her computer kept locking up, but if I glanced at the screen, it looked fine to me. That sweet girl. I was grateful. We got there about 8:30-9:00 p.m., and I didn’t have to leave until 10:40 p.m., and even then she hadn’t officially asked me to go. I just knew that Billy was sedated and was going to sleep and that I was going to fall asleep on the drive home if I didn’t get going. He was going to be completely alone there. I was going to be completely alone here. But at least I was going to be home. My poor sweetie wasn’t going to have anyone to talk to, nothing to do, nowhere to go. The virus was a blessing at first, because I didn’t have to go to work, and I got to spend all my time at home with Billy. Over 3 weeks together all the time. What a blessing. Now I have to trust God to take care of both of us. Keep him safe there, provide healing and strength to Billy, and wisdom to his doctors. Keep me safe here, alone in a big house. God please take care of us.