CBC: Whites: 1.18; Hemoglobin 7.1; Platelets 37,000; ANC ?
Liver function: Bilirubin 6.8; Alkaline Phosphatase 172; ALT 53; AST 33
It was a busy morning, but with some good progress. They just took him off oxygen and his fever has been staying around 100 or under. He was given one unit of blood. They are still using ice packs and Tylenol in very limited doses. Many people were in and out today, including the Doctor on call, which was Dr. Sekeres, who is the Principal Investigator for the AG2221 Study Trial at Cleveland Clinic. He recommended that Todd get back on his trial drug today. He did not want to call in an infectious disease doctor until they had reviewed the CT Scans of Todd's lungs from Miami Valley Hospital. Todd's Research Nurse also came up and answered all of our questions!
There is so much information here, I will try to not digress:
- We learned or were reminded that Todd has a genetic mutation, UAG1TA1 that causes him to metabolize things differently in the liver. They both agreed that while Todd's total bilirubin is high, the other liver numbers are good, so he was able to get back on his trial drug this afternoon. That should hopefully help with the low blood counts. I asked at what point do we need to be concerned about his liver shutting down, and they said it differs from person to person, but Ashley felt he is far away from that happening. See: Liver Blood Tests
- She will come over to take the blood draws for the trial. He had an appointment to be here tomorrow anyway for Day 15, Cycle 7 trial tests.
- The last bone marrow biopsy results are back, and the blast cells have stayed the same as the prior biopsy: blasts at 2% This is good news. The disease is stable and not progressing.
- I asked if the antibiotics were working or if they needed to prescribe something different. She explained that the Zosyn is for broad coverage for bacterial infections like the pneumonia and the Vancomycin is a Glycopeptide antibiotic for strep (mainly MRSA), and skin infections.
- She also asked if he was having hallucinations, crazy dreams, or visions from taking the Voriconazole. This was the first we had heard of this side effect! He said yes; he thought he was loosing it! One night after we turned off the TV he complained that everything in the room was yellow, or all he could see was yellow. Last night when he got up to go to the bathroom he thought his IV pole looked like a Christmas tree with dancing lights around it. He also had some crazy dreams, but couldn't remember all of them. I guess the effects lessen the longer you are on the drug, so hopefully he won't be tripping for long! No one at Miami Valley told us this side effect, only that he might need to have his eyes checked and that it could make him dizzy or light-headed.
- We learned the food service is undergoing major changes and the last company who handled it was fired and now the interim company they hired until the new company begins, has very poor customer service. Bummer. Of course, he hasn't felt like eating much, but when he requested a bagel and cream cheese for breakfast, they send a plain slice of toast instead and no banana claiming they were out of both!
- Dr. Sekeres is highly respected and published in the hematology/oncology community. Even though I was disappointed with the amount of time he spent with us today (he was also looking at the clock ready to leave).
Continuing IV antibiotics
but changed the anti-fungal to an oral pill instead of IV. All seem
hopeful that if his fever continues to diminish, that they can start to
ween him off of the IV antibiotics in the next few days and we might be
out of here by the end of the week. He still feels weak and tired from
the low blood counts and constant fevers.
By early evening, we received news that all the cultures and the influenza test came back negative. The only thing that came back positive was for Rhinovirus, or the Common Cold. This is transferred by droplets in the nose or mouth, so now anyone entering the room only has to wear a face mask. Todd's BMT doctor came up to see him about 5:30 p.m. She said they looked at CT scans and they all agree that that there is a pneumonia in that bottom left lung. She said that could or could not be the cause of all this, with the addition of the Rhinovirus/Cold. She said there was no way to tell whether or not the pneumonia is bacterial or viral without the biopsy done via the bronchoscope, which they have no intention of doing. She agreed that it is too risky to do it, especially since it is located in the lower left lobe of the lung, and since his platelets are too low. Just going in to look and not biopsying would be too risky and not worth it.
She agreed that things are going to be on a "wait and see" approach over the next few days, looking for continued progress including watching for the deescalation of the fevers, anti-fungal,and IV antibiotics. She seemed to think that we might be out of here by the end of the week, as long as there are no complications, but cautioned us to just take things a day at a time.
By early evening, we received news that all the cultures and the influenza test came back negative. The only thing that came back positive was for Rhinovirus, or the Common Cold. This is transferred by droplets in the nose or mouth, so now anyone entering the room only has to wear a face mask. Todd's BMT doctor came up to see him about 5:30 p.m. She said they looked at CT scans and they all agree that that there is a pneumonia in that bottom left lung. She said that could or could not be the cause of all this, with the addition of the Rhinovirus/Cold. She said there was no way to tell whether or not the pneumonia is bacterial or viral without the biopsy done via the bronchoscope, which they have no intention of doing. She agreed that it is too risky to do it, especially since it is located in the lower left lobe of the lung, and since his platelets are too low. Just going in to look and not biopsying would be too risky and not worth it.
She agreed that things are going to be on a "wait and see" approach over the next few days, looking for continued progress including watching for the deescalation of the fevers, anti-fungal,and IV antibiotics. She seemed to think that we might be out of here by the end of the week, as long as there are no complications, but cautioned us to just take things a day at a time.
The day ended pretty well. Todd seemed to be able to be less lethargic but his headache became more painful after getting up to go to the bathroom and brush his teeth. He had to take 2 small doses of oxycodone. He started to have some sinus drainage and requested something for it.
He still isn't eating much, but he just doesn't feel like it. He hasn't lost weight, but has gained it due to all the fluids and IV medications they have given him. But there is no swelling or edema, so they are just keeping an eye on it.
It would be unbelievable if all this sickness was from the common cold with his compromised immune system and/or the viral or bacterial pneumonia.
The nurse asked us if we regretted having the bone marrow transplant and if we had to do it all over again would we do it. Todd said no regrets; he would do it again. I, on the other hand, have some regrets and knowing what I know now, would have waited I think. It is really hard though to second guess yourself afterwards. I have learned to eat my words several times. I remembered telling Todd last year while we were here for his transplant, walking up and down the halls on the leukemia side of the floor (where we are now). "Just think with the transplant, you will never have to be on this side of the hospital ever, like all the other AML patients had to." And, here we are, post-failed transplant, on the Leukemia side of the floor. Life has a way of proving you wrong.
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