Three Lumens

 Yesterday was an eventful day. Tony's first appointment started at 9. It was a simple blood draw, and then a covid test (always a bad idea to give someone chemo if they have covid). Everything came back that he was in the clear so we met with the doctor. 

He went over everything we talked to the cardiologist about, and said that she had signed him off for the transplant. He also said that the biopsy showed 0.2% residual cancer but that he doesn't think they'll get him any lower than that pre-transplant, so he feels it's best to proceed with the transplant. 

Then he brought up Tony's latest CT scan. He said we needed to meet with a specialist because there was some new spots showing up in his Chest CT. We told him we thought is was just the last remaining bit from his pneumonia. And he said it was compared to the previous CT. We had to tell him that the most recent CT was actually done at the Tremonton hospital and that the test results we'd seen showed that they actually compared last weeks to his chest CT in July and not the one from 3 weeks ago. 

So this has been a recurring problem for us. We understand their reasoning for doing it, but it doesn't come without frustrations. Tony has been passed back and forth between 2 teams of doctors. One is regular hematology/oncology. The other is the transplant team. But in our experience, they haven't done especially well at communication with each other. 

Once they were made aware of the error, they were able to pull up his CT scan from January 7th and have it compared to last weeks scan. The radiologist said that it does look like the tail end of the pneumonia now that he can compare it to the CT that showed pneumonia. So he also cleared Tony for transplant. The transplant coordinator thanked us for looking over the test and recognizing the error. 

While we were in his office, he also noticed Tony looked extra pale. Tony told him he's been having a hard time doing too much. So they gave him a red blood cell infusion to hopefully bolster him up for his transplant. 

When we looked at the days schedule in the morning, we thought we'd be done at 11. We ended up not being done until almost 4. 

Then a nice man from a charitable foundation that helps out with mental health of kids who have a parent with cancer, took us out to a nice dinner at an adorable cafe in town. 

Now, onto today.

Tony had his line placed this morning that will get him through the transplant. The last time he had a chest port put in (in Virginia) they put him out for the procedure. So he was a bit surprised when they didn't for this one. He says he would have much preferred to sleep through the operation. They did give him a mild amount of sedation, but he does remember the entire operation. He said it hurt a bit, but it wasn't too bad. I was sad to miss out on loopy Tony. I always like to be in the room when he comes out of surgeries cause he's hilarious. But no silly Tony this time. 

The line has 3 lumens, so they can have 3 different IVs hooked up to him at the same time. They pulled the picc line out of his arm. My friend Betsy sewed a bunch of shirts with zipper access to a chest port, that we haven't used since she sewed them since he's had a picc line instead. But now he'll have several months of the chest port, so we'll put those t-shirts to good use. Thanks Betsy!

Tomorrow he starts outpatient chemo for the transplant. He'll check into the hospital next Monday and the transplant will happen a week from today. 

Thanks for all the thoughts/prayers/fasting. We appreciate you!

A Million Tests

 The last week has been filled to the brim with tests. 

On Wednesday the 18th we went down for Tony's bone marrow biopsy, but he had labs drawn first thing in the morning at 7:10. They took 15 different vials of blood, and did a urine sample. Then we met with the several different people. First it was a nurse practitioner, then the pharmacist came in to talk to us about a new medication that he needs to take for his liver. Then the nurse came in and told us that his bone marrow biopsy would need to be moved to Monday since his counts weren't up high enough yet. Then the social worker came in and got us set up to stay at the Hope Lodge during his week of chemo.  Then the nurse came back in and told us they'd accidentally looked at the previous weeks numbers and that they were going to do the biopsy. About twenty minutes later, they took us back for the biopsy, and then I got a frantic call from the nurse asking where we were. I told her we were in the procedure room and she told us not to start. She came in and let us know his counts had come back and they really were still too low. It was a bit of an odd day. 

Friday the 20th was a simple blood draw in Farmington. It showed that all his numbers were about the same as Wednesday. 

On Monday the 23rd, we went down to Huntsman for a day filled with tests. We started with a 7:50 blood draw. There nurse that drew his blood let him know she'd been pulled from a different part of the hospital. Then we went downstairs for a pulmonary function test, and they were able to get him back a little bit early. Then we had some extra time between appointments so we had breakfast in the cafeteria. Then we went back upstairs for a Echo cardiogram. Then was the dreaded bone marrow biopsy. It was one of the worst he's ever had. While she was pushing the needle into the back of his hip bone for a sample, it slipped into a hole from a previous biopsy and caused him a lot of pain. It also took about twice as much time as a previous biopsy (we asked about having the same guy as last time and found out he no longer works there :(    When they took us back for the biopsy, we let the nurse know that we hadn't seen any results from the mornings labs. She went to investigate and they couldn't figure out what happened, so they redrew the labs. Then we went up to the 4th floor for an Allo Education class. Unfortunately for us, we already know quite a bit about bone marrow transplants. So the 2 1/2 hour long class that was basically just read to us from power point slides and gave us no new information wasn't our favorite part of the day. But far less painful than the bone marrow biopsy, so I guess we'll take it. 

On Tuesday the 24th we got a message letting us know they didn't love Tony's Echo cardiogram. They set up an emergency appointment with a cardiologist for 8:20 for Thursday January 26th. 

Thursday, January 26th: The cardiologist was in Sugarhouse so we started the day there. They got us back pretty quickly and the cardiologist was very nice. They did an EKG and explained the situation to us. Tony has decreased left ventricular systolic function. (In plain English, healthy hearts squeeze blood out at above 50%. Tony's heart squeezes the blood out at 44%. They will not do transplants on patients who are under 40%.) They wanted a cardiologist to get a better look at it and decide if he was in a good enough condition to move forward with the transplant. They are putting him on 2 heart medications that she explained he'd likely be on for the rest of his life. The heart damage is likely caused by all the previous chemo he's had. She did sign off and say he should be ok to go forward with the transplant, but it did give us more to worry about. 

Next we drove up to Huntsman for his blood draw. Shortly after we had another education class, but this one was far more tailored to his exact schedule and very helpful. Afterwards, we found out that his CT scan (of his sinuses and lungs) was actually at the University of Utah Hospital, so we took the long underground pathway between the hospitals and spent a good deal of time wandering around trying to find where we needed to be. Thankfully, we were early, so once we figured out where the CT scan was, we walked over to the cafeteria and had a good lunch. Then it was the CT scan, and then back up to Huntsman for a meeting with the nurse practitioner. She answered a few of our questions about the heart problems and let us know we're just waiting on results from the bone marrow biopsy at this point. 

Coming up: 

On Monday, January 30th Tony will have labs and a meeting with his oncologist to sign all the paperwork for the Transplant. 

Tuesday, January 31st he'll get his port placed in his chest. 

February 1-5, he'll receive outpatient chemo (Fludarabine)

On February 6th he'll check into the hospital and receive one dose of the chemo Melphalan. 

Transplant will happen the next day on February 7th. 

He'll likely be in the hospital around 20 days. Then he'll need to be down in SLC for an additional 80 days. 

Finally! A Schedule!

 Sorry, I just realized I didn't update when Tony came home from the hospital. He came home on Sunday. His white count is still low, so he hasn't recovered, but he is no longer having fevers, and he isn't getting worse. 

We had an appointment yesterday with his regular Hematologist. He's handing him off to the Transplant team. The transplant team sent us a schedule for his Transplant. It is as follows:

Jan 18th: Bone Marrow Biopsy. 

Jan 23rd: Allo education class

Jan 25th: RN Education, CT of his Chest, ECHO of his heart, Pulmonary tests

Jan 30th: Meet with Transplant doctor and sign all the consents. 

Feb 1st: Chest Line placement (He will need a port in his chest for all the treatments)

Feb 2 - 6: Outpatient Chemo infusions - fludarabine 

Feb 7th: Admitted to the hospital - Infusion of Melphalam chemo

Feb 8th: Stem cell Transplant

Pneumonia kind of a day

 Tony spiked a fever tonight, and since he's immunocompromised right now, that means automatic ER visit. Our little Kevin has bronchitis, so we originally thought that was most likely the cause since Tony had started coughing yesterday. His cough got worse throughout the day, and then we checked his temperature at 9 pm and he was 101. We called down to Huntsman and they said, definitely go to the ER, but not their ER. He said they were completely swamped and he wouldn't be able to be seen for hours. We were quite happy to head to our little Tremonton hospital instead. They had him back in a room within 5 minutes, and all the tests done within the hour. But then things got slow. We did have to wait for the ER doctor to communicate with his oncologists in Salt Lake City to make sure he was doing the best things for our current situation. We found out, surprisingly, that he has pneumonia. It's in a very early stage, but it's still not something you mess around with. So they have him on 3 different IV antibiotics: Rocephin, Azithromycin, and Cefepime. 

Unfortunately, they decided around 1 a.m. that they would need to keep him for the next 48 hours to watch his symptoms. We know this is for the best, but he is disappointed to be sleeping in the hospital again. We're not sure what this means for the timing of his transplant. The doctor was very clear he cannot start any kind of treatment if he has any sign of upper respiratory illness.  But we're trying to take things one problem at a time.