Day 9 Hopitalized: An early morning fever causes delay in going home.

Day 9 Hospitalized:  October 22, 2015 @Cleveland Clinic

CBC:  Whites .39!!; Hemoglobin 8.8; Platelets 56,000; ANCs: Too low to count!!!
Liver Function:  Total Bilirubin: 5.6; Alkaline Phosphatase: 258; ALT: 50; AST: 39
Coagulation: PT Sec: 11.3; PT INR: 1.0; APTT: 35.6 (high)

Well, instead of getting to go home today as planned, Todd is still here.  He spiked a fever of 101 last night about 12:30 a.m.  They didn't need to give him anything for it, and really couldn't because his bilirubin yesterday was the highest ever.  It went down on its own throughout the night.

I knew this probably meant that they would NOT let him go home today and the Nurse Practitioner confirmed this news early this morning.  When the Attending Hematologist/Oncologist, Dr. Sekeres and his team came in before noon, he had already formulated a plan of action, one that I was happy with.  Unsure what caused the fever to spike: whether it was the Rhinovirus/Cold hanging on or the pneumonia, he decided to run a new CT scan of the lungs and the abdomen.  They want to get a fresh look at the pneumonia, and have their own radiologists look at it.  Up until now, they have only been able to review the CT images sent to them from the scan down last week at Miami Valley Hospital in Dayton.  They are just doing the abdominal scan as a precaution.  The Dr. said it never fails, that a day later, they wish they had done the abdominal, so he is trying to avoid that scenario.

Well, transportation within the Cleveland Clinic appears to be an issue too.  So far, we have been waiting an hour for someone to come up to get Todd to take him to radiology.  Ugh... Our nurse told us that there still is a shortage of help in medical staffing all around: doctors, nurses, and transportation staff.  He explained that is why the doctors are making more use of Nurse Practitioners and Physician Assistants.  Well two of our kids may be heading into the medical profession to help with this shortage.  Abby was planning on going into Psychiatry, and is taking pre-med coursework, but she really has developed a passion for alternative, holistic medicine.  She just found out about a study abroad trip to India with the pre-med program and a doctor going there to  treat patients with alternative medicine.  The trip will be during Winter break, but she needs to get signed up and paid for it now.  We are looking into it.  And, my youngest, Ellie, just joined the pre-med club at school, and is looking to start volunteering at Soin Medical Center.  My Hannah Lewis will cheer everyone up with her awesome art!  The Cade family has got this!

They finally took him down an hour or so later, and it only took about 15 minutes. I checked with his nurse about 7:00 p.m. and he said Todd's results were back, but wasn't sure if the doctor had a chance to review the radiologist's report yet.  From a quick look at the images and the report, nothing officially, it looked like the pneumonia was a bit more defined or not as hazy with "nodules" which if I recall my prior conversations with the infectious disease doctors and others, that can be an indicator of an fungal type of pneumonia.  So, I guess we won't know the official results until the nurse practitioner or the doctors make their rounds in the morning. 

So, as long as he can go through the night without a fever, and the pneumonia and Rhinovirus can be treated orally at home, we should be able to go home tomorrow either late morning or early afternoon.

Sue Mize, our current social worker at the Cleveland Clinic called after she noticed Todd had been admitted to offer a room at the Hope Lodge for tonight, as they had an opening.  I declined since Todd should be able to released tomorrow.  My neck has been stiff though from sleeping on that recliner bed and if I knew he was going to be here any longer, I would have been tempted to accept!  It was nice to know though, that if this happens again, that I could call her and she can try to make arrangements for me there in the future.  Nice option to have if he would ever be hospitalized for a longer period of time. 

Personal notes:
We may have someone coming to see the house this weekend from out-of-state.  I'm not finding work, and I'm just resigned that it is not the right timing, but I could continue to use prayers in this department.  I have applied for a fellowship at the Library of Congress starting next year, but it is a long-shot to say the very least and would require a temporary move of the family or me.  So, that's not ideal.  Right now, I will be happy to get through this semester and graduate, although after graduation, internships will likely become a closed door to me.

When we get home, I will need help with Todd, so that I can get back to my practicum at the University of Dayton.  I mainly just need someone to come sit with him during the day (9am-5pm).  I know his mom and my parents will be willing to help, but it would be nice, to have several people willing to rotate.  I would like to be the one to go with him to his appointments if I can. His research nurse Ashley came by today saying she had been trying to get a hold of his local oncologist all day to set up an appointment for Monday, October 26, 2015 of next week. (Where has this month gone?).  And, if he is feeling better, they would like to see him on Thursday of next week.

Thanks for your prayers and support.

Day 7 of Hospitalization: Todd improves

Day 7:  October 20, 2015.  Todd hospitalized; now at the Cleveland Clinic
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. 

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.