On Tuesday night he said he felt like he chest was tight or something was wrong. He went to bed and ran a few errands on Wednesday morning, but my early afternoon he was run down and had to lay down in the bed. He took a Sudafed with Tylenol thinking he was getting sick and went to sleep. By 5:30 pm he was still feeling poorly and wanted to continue to rest, so I let him sleep. I went in to check on him about 7:30 and felt his forehead to see if he was warm. After insisting on taking his temperature, I was shocked to see it had registered a temperature of 101.1!
I hesitated not knowing what to do at first. This was unbelievable! This couldn't be happening! He had been doing so well. It was a bad nightmare, one that we have had before. The fear of infection; the rush to the ER.
I didn't stay shell-shocked for long. The prescribed protocol I knew so well came to mind. First, I called the Oncologist/Hematologist Fellow on call at the Cleveland Clinic. I knew we would likely need to get to the ER, but this was a new situation. He is a trial drug patient. After paging the fellow, I texted his research nurse in a desperate attempt to get her advice. The Cleveland Clinic Fellow called back saying get him to the ER here in Dayton without delay.
By the time I paged the local oncologist to arrange the ER visit, Todd's nurse had texted me back saying the same: get him to the ER. I told Todd to get ready and I began to pack anything he might need, because it was likely they would admit him. I was shaking by now, and he didn't argue with me. He slipped on a jacket and shoes and we were ready to go. I called my mom to come stay with Ellie and the local oncologist said it would be best to go to the main campus of Miami Valley since they would likely have to transfer him there if we went to Miami Valley South.
Day 1, Wednesday, October 14, 2015
Counts: Whites: 3.3; Hemoglobin: ; Platelets: 55,000 ANCS; Total Bilirubin:
Upon arrival, they got his vitals and got him back to a room right away. I figured they would want to start him on IV antibiotics, but I didn't know what he could have since he was on the trial drug. There is a list of drugs that cannot be taken during the trial study. I'm so grateful that I have such a great relationship with his research nurse at the Cleveland Clinic! She let me know which antibiotics were permitted. They took blood for cultures and a CBC, then started him on IV fluids and Zosyn antibiotics. By this time, his fever was up to 103 degrees F. They took him down to get a chest x-ray and urine sample. They added a second IV antibiotic, Vancomycin. Then, we waited.
At first, the doctor in the ER came in and told us that the chest x-rays looked fine, but they were going to admit him, but within the half-hour, the hematologist/oncologist on-call at Miami Valley came in and said, that upon second look, they spotted a "hazy" area in the bottom left lobe of his lungs and were going to do a CAT scan to confirm a suspicion that he had pneumonia, which it did. He was having some pain in this area in his back, so this made sense.
Day 2:
Counts: Whites:4.1; Hemoglobin:8.7 ; Platelets: 55,000 ANCS; Total Bilirubin:4.9; Indirect Bilirubin: 4.3; AST 1.21
They had him up in a room right after midnight on Thursday, October 15, 2015. At this point, we thought he might be in the hospital for two or three days, like before, when he had fevers. Little would we realize the uphill road Todd would be climbing.
The local oncologist, his associates, and an infectious disease doctor all were coming in to see Todd. The infectious disease doctor was concerned about Todd's total bilirubin numbers and his fever. We complained that he was still waiting on Tylenol to help with his fever, and that there was no order from any doctor to give him any, which caused the nurse to drag her feet in getting him some. She was so upset, she went and got him Tylenol herself and made sure he got it! I also needed to get the list of drugs that he is NOT allowed to have on the trial study faxed to the nurse's station, and then have her scan it into Todd's record so all the doctors and nurses had access to it.
Todd's research nurse had called me that morning and asked us to consider transferring him to the Cleveland Clinic at the request of his BMT doctor. She could keep a better eye on him there, especially if his stay is going to be more than just a couple of days, which she cautioned it could turn into a longer term stay.
At 2:30 p.m. the nurse came in and took away his food and water, telling him he couldn't have anything to eat or drink because the infectious disease doctor had ordered a scan with contrast die of his liver, just to make sure there were no unseen problems. We had a good idea that it was just from the trial drug, as it has that side-effect. They told us he would have to start drinking the contrast dye beginning at 4:00 p.m. and to call the nurse when he had drank half of it, over the next two hours, so they could prepare to take him down to radiology. We rang her around 5:30 pm and she called down saying that he had to wait to go down until 7:00 p.m. because there were some "emergency" priority scans that needed to be done before him. Of course, 7:00 pm is shift change. So, 7:00 came and went and I couldn't get a nurse down to his room. When I finally did, I was angry, because he was hungry and feverish and couldn't drink anything cold or eat. She said she would find out what was wrong, and then addressed his fever, which was spiking too. Apparently, there was no one from "Centran" to come get him and wheel him down in to radiology! This was totally unacceptable! I could have wheeled him down myself, if I knew that was the hold-up! By 8:30 p.m. I was fuming and his nurse on duty told CT/Radiology that she was going to wheel him down. I went with them, because I was determined to talk to someone.
After the radiologist finished with him, I told her I wanted to why it took so long to get him down here, even with the "emergency" patients, it couldn't have taken hours to get him down here. I said each scan should only take about10-15 minutes, so that doesn't explain why it took so long. I told her we had no delay in getting his CAT scan done in the ER. She admitted that ER has their own CAT scan machine, which made the delay even more unacceptable! Why didn't they take these "emergency cases" to the ER then?
She immediately blamed "Centran." I asked who was this? A separate contractor? She explained that they are hired [by Premier Health]to deliver patients to radiology. I told her that the wait and reason for the delay was totally unacceptable. I wanted to file a complaint with them and she said they would send someone up to speak to me. Two men came up, one who was an "acting supervisor" but the supervisor himself was not available. I told him how unacceptable this was, what poor customer service, how he was sick and needed to eat and drink, and was denied this until after the scan. In addition, I asked him when we would get the results back? Would there be someone to read the report tonight? No. Of course not, well there were radiologists, but now his would be last in the que to be read! The order from the infectious disease doctor was ordered in the morning and that the test wasn't done until 8:30 p.m. He agreed with our sentiments and said he would report it up the management chain.
So, he finally got to eat something! It was a long frustrating day with the nursing staff and the STNA, which we saw maybe twice in a 12 hour shift. I had enough.
Day 3: Friday, October 16, 2015
Counts: Whites: 2.1; Hemoglobin: 7.7; Platelets: 48,000 ANCS 1.9;
Liver: Total Bilirubin: 4.3; Alkaline Phosphatase 177; AST: 56; ALT: 116; Indirect Bilirubin 3.4
On Friday morning, I had to stay home in the morning and get the Radon-X people set-up for them to install the radon mitigation system we had scheduled for that day. They came around 10:00 a.m. and when we went to the basement, he had noticed that there was little pools of water in the storage room, which upon further inspection it seemed to wet in a circle around the hot water heater! This was all we needed; to have to replace the hot water heater! So, I tried to get a hold of plumber, but no one could make it out that day. So, I called Josh Allen, from Allen Home Inspection, a friend of ours, and he said he would come by and have a look at it. I would find out from him later in the day, that there was some rust in the bottom of the tank, and it was likely leaking from there. So, he was worked behind the scenes to get a plumber to come install a new hot water heater for us the following Monday. Another huge expense and stress we had not planned for!
While at home, I called his BMT doctor in Cleveland and she urged me to transfer him to Cleveland Clinic. She can't see his results or advise a course of treatment because she doesn't practice there. She has been treating him for over a year, seeing him currently every two weeks. After the previous day, I wanted to move him. We were also told that it is harder to transfer patients on the weekend. I went out to the hospital and tried to convince Todd to transfer, but he wasn't ready to do that. Our family is here, our support is here. Todd wanted me to be able to go home and stay with Ellie. I understood that and decided that we could re-evaluate the situation the next day, and each day after that.
I also called Sam, his other trial nurse, and she was going to put a call into the drug company about how high he bilirubin numbers could go, and Todd still be allowed to take his AG221 Trial Drug. I had looked it up, where Ashley had said it could 5x the normal level, but Sam wanted to confirm this at the stage he was at in the trial. She ended up calling me back and said that 5x was correct using an average rate of normal of 1.5. So technically, his bilirubin could go as high as 7.5 and he could still receive his trial drug dose.
Friday started out just as frustrating at the hospital. I called his nurse early in the morning and asked if they had his CBC results, she said no, so I asked her to call me with the results when she got them. I never heard from her, so when I got into the hospital, about 12:30 in the afternoon, I found out that they didn't even do his lab work until 10:30 a.m. and that they still didn't have any results back. I know that it only takes a maximum of 20 minutes to get a preliminary CBC back. Todd was upset because there was no order in the system by any doctor to have a standing CBC ordered for early in the morning. Which is usually standard procedure: they take the CBC early in the morning 4:30-6:30 a.m. so the results will be back when the doctors makes their rounds around 9-10 a.m.
By mid-day, I made up my mind, either they would move him to the transplant unit there or I was requesting a transfer to Cleveland Clinic. The nurse was avoiding me, because they had told her that I was asking for her and for the blood results. So, I had them page the oncologist on call from Todd's local oncologist's office. I told her how upset I was and that I felt he just wasn't getting the care he needed there. I gave her my ultimatum, move him or we were leaving. Luckily, there was a bed open in the transplant unit and they agreed to move him there. So, by 3:30 p.m. they wheeled Todd down to his new room on the transplant floor. His first nurse there, Ashley, was great. He had a fever, and instead of just giving him Tylenol and ignoring him, she packed him in ice around his arms and between his legs to get his temperature down without trying to use the Tylenol, which would be harder on his liver. Even though his liver enzymes were down, they feared giving him too many meds would increase his bilirubin. I appreciated this new approach.
We finally got the liver scan results: it showed some enlargement but no blockage. Bilirubin went down which was good, but so did all of his blood counts which is bad. His numbers this morning showed that he was getting close to needing a transfusion. He started having bad headaches, probably from the low blood counts.
Todd battled high fevers all day. The infectious disease doctor came in two or three times, concerned about what was causing the fevers. He wanted to do an indirect blood test to try to identify any kind of mold infection, but he found out that the labs at Miami Valley Hospital are so limited that they only run that test in the lab on Mondays and Thursdays! So, since it was Friday, they had no choice but to delay.
Todd's brother Patrick came by to visit after work. Todd felt well enough to talk shop for while his fever was down to about 101. However, shortly after he left, we realized that Todd's fever was back up to 103 and would not relent. His wonderful nurse Angel worked so diligently to get it down using a combination of medications, since it had been taking about an hour for the Tylenol to have any effect. They took additional blood cultures when his fever spiked, because nothing had come back from the ones taken on the night he came into the ER. They also took another CBC blood count, and his hemoglobin had dropped to 7.2. We knew he needed a blood transfusion at this point, but I knew it would take several hours to get a type and screen and then get the blood ordered. The infectious disease doctor came back in and decided to go ahead and start anti-fungal medication, called Voriconazole, by IV, in attempt to treat the pneumonia, as a fungal type of bacteria, just in case, in light of the continued high fevers. He also recommended that a pulmonary specialist be consulted about doing a lung biopsy.
They were finally able to get his fever to come down, but it was so late and I was hesitant to leave that night, but I needed to pick up Ellie from a friend's house and I needed sleep. I left around 12:30 a.m.
Day 1, Wednesday, October 14, 2015
Counts: Whites: 3.3; Hemoglobin: ; Platelets: 55,000 ANCS; Total Bilirubin:
Upon arrival, they got his vitals and got him back to a room right away. I figured they would want to start him on IV antibiotics, but I didn't know what he could have since he was on the trial drug. There is a list of drugs that cannot be taken during the trial study. I'm so grateful that I have such a great relationship with his research nurse at the Cleveland Clinic! She let me know which antibiotics were permitted. They took blood for cultures and a CBC, then started him on IV fluids and Zosyn antibiotics. By this time, his fever was up to 103 degrees F. They took him down to get a chest x-ray and urine sample. They added a second IV antibiotic, Vancomycin. Then, we waited.
At first, the doctor in the ER came in and told us that the chest x-rays looked fine, but they were going to admit him, but within the half-hour, the hematologist/oncologist on-call at Miami Valley came in and said, that upon second look, they spotted a "hazy" area in the bottom left lobe of his lungs and were going to do a CAT scan to confirm a suspicion that he had pneumonia, which it did. He was having some pain in this area in his back, so this made sense.
Day 2:
Counts: Whites:4.1; Hemoglobin:8.7 ; Platelets: 55,000 ANCS; Total Bilirubin:4.9; Indirect Bilirubin: 4.3; AST 1.21
They had him up in a room right after midnight on Thursday, October 15, 2015. At this point, we thought he might be in the hospital for two or three days, like before, when he had fevers. Little would we realize the uphill road Todd would be climbing.
The local oncologist, his associates, and an infectious disease doctor all were coming in to see Todd. The infectious disease doctor was concerned about Todd's total bilirubin numbers and his fever. We complained that he was still waiting on Tylenol to help with his fever, and that there was no order from any doctor to give him any, which caused the nurse to drag her feet in getting him some. She was so upset, she went and got him Tylenol herself and made sure he got it! I also needed to get the list of drugs that he is NOT allowed to have on the trial study faxed to the nurse's station, and then have her scan it into Todd's record so all the doctors and nurses had access to it.
Todd's research nurse had called me that morning and asked us to consider transferring him to the Cleveland Clinic at the request of his BMT doctor. She could keep a better eye on him there, especially if his stay is going to be more than just a couple of days, which she cautioned it could turn into a longer term stay.
At 2:30 p.m. the nurse came in and took away his food and water, telling him he couldn't have anything to eat or drink because the infectious disease doctor had ordered a scan with contrast die of his liver, just to make sure there were no unseen problems. We had a good idea that it was just from the trial drug, as it has that side-effect. They told us he would have to start drinking the contrast dye beginning at 4:00 p.m. and to call the nurse when he had drank half of it, over the next two hours, so they could prepare to take him down to radiology. We rang her around 5:30 pm and she called down saying that he had to wait to go down until 7:00 p.m. because there were some "emergency" priority scans that needed to be done before him. Of course, 7:00 pm is shift change. So, 7:00 came and went and I couldn't get a nurse down to his room. When I finally did, I was angry, because he was hungry and feverish and couldn't drink anything cold or eat. She said she would find out what was wrong, and then addressed his fever, which was spiking too. Apparently, there was no one from "Centran" to come get him and wheel him down in to radiology! This was totally unacceptable! I could have wheeled him down myself, if I knew that was the hold-up! By 8:30 p.m. I was fuming and his nurse on duty told CT/Radiology that she was going to wheel him down. I went with them, because I was determined to talk to someone.
After the radiologist finished with him, I told her I wanted to why it took so long to get him down here, even with the "emergency" patients, it couldn't have taken hours to get him down here. I said each scan should only take about10-15 minutes, so that doesn't explain why it took so long. I told her we had no delay in getting his CAT scan done in the ER. She admitted that ER has their own CAT scan machine, which made the delay even more unacceptable! Why didn't they take these "emergency cases" to the ER then?
She immediately blamed "Centran." I asked who was this? A separate contractor? She explained that they are hired [by Premier Health]to deliver patients to radiology. I told her that the wait and reason for the delay was totally unacceptable. I wanted to file a complaint with them and she said they would send someone up to speak to me. Two men came up, one who was an "acting supervisor" but the supervisor himself was not available. I told him how unacceptable this was, what poor customer service, how he was sick and needed to eat and drink, and was denied this until after the scan. In addition, I asked him when we would get the results back? Would there be someone to read the report tonight? No. Of course not, well there were radiologists, but now his would be last in the que to be read! The order from the infectious disease doctor was ordered in the morning and that the test wasn't done until 8:30 p.m. He agreed with our sentiments and said he would report it up the management chain.
So, he finally got to eat something! It was a long frustrating day with the nursing staff and the STNA, which we saw maybe twice in a 12 hour shift. I had enough.
Day 3: Friday, October 16, 2015
Counts: Whites: 2.1; Hemoglobin: 7.7; Platelets: 48,000 ANCS 1.9;
Liver: Total Bilirubin: 4.3; Alkaline Phosphatase 177; AST: 56; ALT: 116; Indirect Bilirubin 3.4
On Friday morning, I had to stay home in the morning and get the Radon-X people set-up for them to install the radon mitigation system we had scheduled for that day. They came around 10:00 a.m. and when we went to the basement, he had noticed that there was little pools of water in the storage room, which upon further inspection it seemed to wet in a circle around the hot water heater! This was all we needed; to have to replace the hot water heater! So, I tried to get a hold of plumber, but no one could make it out that day. So, I called Josh Allen, from Allen Home Inspection, a friend of ours, and he said he would come by and have a look at it. I would find out from him later in the day, that there was some rust in the bottom of the tank, and it was likely leaking from there. So, he was worked behind the scenes to get a plumber to come install a new hot water heater for us the following Monday. Another huge expense and stress we had not planned for!
While at home, I called his BMT doctor in Cleveland and she urged me to transfer him to Cleveland Clinic. She can't see his results or advise a course of treatment because she doesn't practice there. She has been treating him for over a year, seeing him currently every two weeks. After the previous day, I wanted to move him. We were also told that it is harder to transfer patients on the weekend. I went out to the hospital and tried to convince Todd to transfer, but he wasn't ready to do that. Our family is here, our support is here. Todd wanted me to be able to go home and stay with Ellie. I understood that and decided that we could re-evaluate the situation the next day, and each day after that.
I also called Sam, his other trial nurse, and she was going to put a call into the drug company about how high he bilirubin numbers could go, and Todd still be allowed to take his AG221 Trial Drug. I had looked it up, where Ashley had said it could 5x the normal level, but Sam wanted to confirm this at the stage he was at in the trial. She ended up calling me back and said that 5x was correct using an average rate of normal of 1.5. So technically, his bilirubin could go as high as 7.5 and he could still receive his trial drug dose.
Friday started out just as frustrating at the hospital. I called his nurse early in the morning and asked if they had his CBC results, she said no, so I asked her to call me with the results when she got them. I never heard from her, so when I got into the hospital, about 12:30 in the afternoon, I found out that they didn't even do his lab work until 10:30 a.m. and that they still didn't have any results back. I know that it only takes a maximum of 20 minutes to get a preliminary CBC back. Todd was upset because there was no order in the system by any doctor to have a standing CBC ordered for early in the morning. Which is usually standard procedure: they take the CBC early in the morning 4:30-6:30 a.m. so the results will be back when the doctors makes their rounds around 9-10 a.m.
By mid-day, I made up my mind, either they would move him to the transplant unit there or I was requesting a transfer to Cleveland Clinic. The nurse was avoiding me, because they had told her that I was asking for her and for the blood results. So, I had them page the oncologist on call from Todd's local oncologist's office. I told her how upset I was and that I felt he just wasn't getting the care he needed there. I gave her my ultimatum, move him or we were leaving. Luckily, there was a bed open in the transplant unit and they agreed to move him there. So, by 3:30 p.m. they wheeled Todd down to his new room on the transplant floor. His first nurse there, Ashley, was great. He had a fever, and instead of just giving him Tylenol and ignoring him, she packed him in ice around his arms and between his legs to get his temperature down without trying to use the Tylenol, which would be harder on his liver. Even though his liver enzymes were down, they feared giving him too many meds would increase his bilirubin. I appreciated this new approach.
We finally got the liver scan results: it showed some enlargement but no blockage. Bilirubin went down which was good, but so did all of his blood counts which is bad. His numbers this morning showed that he was getting close to needing a transfusion. He started having bad headaches, probably from the low blood counts.
Todd battled high fevers all day. The infectious disease doctor came in two or three times, concerned about what was causing the fevers. He wanted to do an indirect blood test to try to identify any kind of mold infection, but he found out that the labs at Miami Valley Hospital are so limited that they only run that test in the lab on Mondays and Thursdays! So, since it was Friday, they had no choice but to delay.
Todd's brother Patrick came by to visit after work. Todd felt well enough to talk shop for while his fever was down to about 101. However, shortly after he left, we realized that Todd's fever was back up to 103 and would not relent. His wonderful nurse Angel worked so diligently to get it down using a combination of medications, since it had been taking about an hour for the Tylenol to have any effect. They took additional blood cultures when his fever spiked, because nothing had come back from the ones taken on the night he came into the ER. They also took another CBC blood count, and his hemoglobin had dropped to 7.2. We knew he needed a blood transfusion at this point, but I knew it would take several hours to get a type and screen and then get the blood ordered. The infectious disease doctor came back in and decided to go ahead and start anti-fungal medication, called Voriconazole, by IV, in attempt to treat the pneumonia, as a fungal type of bacteria, just in case, in light of the continued high fevers. He also recommended that a pulmonary specialist be consulted about doing a lung biopsy.
They were finally able to get his fever to come down, but it was so late and I was hesitant to leave that night, but I needed to pick up Ellie from a friend's house and I needed sleep. I left around 12:30 a.m.
Day 4: Saturday, October 17, 2015
Counts: Whites: 1.7 ; Hemoglobin: 7.6; Platelets: 37,000 ANCS 1.5; Total Bilirubin: 4.2; Alkaline Phosphatase 182; AST 41; ALT 93; Indirect Bilirubin: 3.3
I got out to the hospital early. They were just starting the first unit of blood by then! Apparently, it took much longer than usual to get the blood products ordered and delivered, as they needed his blood type with CMV negative antibodies, something we hadn't remembered before, but it had been a long time since he had a transfusion. I was a bit frustrated that it took all night to get the blood. They didn't finish transfusing the 2nd unit of blood until about 11:30 a.m. Todd says he feels better and he was able to sleep.
My mom and dad brought Ellie out and Todd's mom stayed home to rest. She had been out Thursday and Friday. We sat waiting for pulmonary specialist to come in to consult on lung biopsy. His platelets were down to around 35,000 making it less than ideal for the procedure.
The pulmonary specialist came in and decided to do the Bronchoscopy, but not to take a biopsy. Felt it was too risky with Todd's platelets being so low, however, he did want to get a liquid sample and scheduled it for Monday.
Our friends Lynda and Chris came by to visit and it helped to raise both of our spirits.
