The Return of the Chemo

 Tony checked in yesterday afternoon for another round of chemo. It was the 5th Thursday in a row that they thought he was starting, but it actually happened this time. There was a bit of confusion and miscommunication about him not already having a picc line in (We had it taken out for our cruise). So he was the last patient to get a picc line put in before the picc team went home. He should get his last dose of this round Sunday morning and come home Sunday afternoon sometime. They're putting off his DLI treatments until they see how his body reacts to this chemo since he recently had all those problems with his liver and pancreas. Overall, we've been a bit frustrated with how things have been going at Huntsman, but it's pretty hard to beat the views. While his blood counts are still normal, they even let him go to this wonderful outdoor space they have on the backside of the hospital. And Tony particularly enjoyed his manicotti meal tonight. 

Home for Father's Day

 Tony responded better than expected to the treatments for his pancreatitis. They moved him from zero food to clear liquids, then they moved him to liquids (he really liked the mighty mango smoothie they offered). Then they moved him to soft solids and he was able to come home Friday afternoon. What was supposed to be 5+ days turned into just over 48 hours. He is supposed to be watching what he eats very carefully to avoid a return of the pancreatitis. He has a blood draw scheduled for Tuesday and then he is supposed to start chemo on Thursday. I say supposed to because this is the 5th Thursday in a row that he is supposed to start. So I guess we'll see what happens this week.  

Expect the Unexpected

 Tony ended up having extreme abdominal pain again last night (this has happened several times and usually corresponds with high liver counts). It started last night around 9 and then didn't stop. So this morning he talked to his doctors and they advised him to come down to their ER (but they did schedule an appointment for the ER so he'd get right in). Even with his scheduled appointment it took more than an hour before they drew his blood. They checked his pancreas levels (lipase)as well this time. Normal range is between 8 - 78. His came back at a whopping 2,055. So they immediately admitted him to the hospital. When the lipase count is that high, it will actually start to digest the pancreas so it can be quite dangerous. He was officially diagnosed with pancreatitis and they have him on a constant flow of fluids and he won't be able to eat for five days or so until they can stop the pancreas from making too much plasma. They suspect an obstruction in one of the ducts, and did a CT scan today of his pancreas, but they will likely do an endoscopy tomorrow to really get to the bottom of what is going on. So it's around 5 days or so in the hospital to get this all stabilized again, and then we'll start talking chemo. Tony is grateful they've finally figured out what's going on and can treat it. He's been dealing with a lot of pain.

Answered prayers paired with more delays

 Lets start with the good news. We received word that Tony is eligible for Donor Lymphocyte Infusion (or DLI) instead of a second bone marrow transplant. This is amazing news as this treatment is far less dangerous for him to undergo. (And he is happy to not have to lose all his hair again. It's coming back in so fuzzy and soft with just a touch more gray. Though his mustache is coming in darker than it used to be). 

When we went in last Thursday to start chemo they delayed it again. We still are unsure exactly what's going on with his liver and the numbers are still too high to start chemo safely. Yesterday he had another ultrasound done, but it didn't give any definitive answers. Today he had an MRI done and we should have results back tomorrow or Thursday. Once again, we've been told that he will start chemo on Thursday. But this will be the 4th time so I guess we'll see if it actually happens this week. 

We had the opportunity to ask a few questions while we were there on Thursday. They are still working out a solid plan but we were told he will likely do another high dose of the maintenance chemo, then five weeks later get a DLI, then do another maintenance chemo, then DLI again 5 weeks later, and then one final DLI about 5 weeks after that. Then they will just watch and see if everything worked. We've already talked to his original donor and he is very willing to do the lymphocyte donation so that this can happen. The risks involved with this treatment are pretty minimal for Tony. They said he could have a bit of Graft vs. Host disease if it was bad the first time, but it was pretty mild the first time so we're hopeful that everything should run fairly smoothly. 

Another Delay

This week has been an interesting one. On Tuesday Tony had a scheduled blood draw to check up on his liver numbers. His ALT numbers were 196 last Thursday and should be between 5 and 60. So on Tuesday they did the blood draw and his ALT numbers had come down to 89. Tony's doctors were a lot happier with those numbers but still felt like it would be a good idea for him to go to his ultrasound appointment on Wednesday. The results came back all normal for his ultrasound, but he did have some pain in his stomach area for a few hours on Wednesday. Tony's doctor's decided to go ahead and start chemo Thursday, so we came down for a blood draw and Covid test (you have to do both before they will admit you for chemo). Our appointment was at 12:50 but they didn't take him back for the blood draw until 1:15 or so. His covid test was supposed to be at 1, but they didn't take us back until almost 2. When we got into the room, Tony's blood results posted. So while we were waiting for the nurse, we pulled up his results. His ALT was up to 549, which is near ten times the healthy rate. So when the nurse came in to do the covid test (this is the one where it feels like they're trying to take a sample of your brain while they're in there, so Tony hates these covid tests), we told the nurse we would likely not be staying. So she rushed off to grab one of the doctors and our suspicions were confirmed. They cannot start the chemo while his liver numbers are so high. The issue is, no one can figure out why they are high. The ultrasound didn't really give us any real information. So we were supposed to get a call today from a Hepatologist (liver specialist) to schedule him an appointment. We did not. We left a few messages with Tony's doctors and they said they are still working on it, so hopefully we will have something more solid soon, but we're suspecting that won't be the case since it's the weekend. 

Tony has another blood draw scheduled Monday to check on his liver levels, and hopefully we will have an appointment set with the hepatologist by then. Then his doctors are predicting (for a third week in a row), that he will start his chemo next Thursday. For reference, he was supposed to start his chemo on May 23rd. Now it is tentatively scheduled for June 9th. His blood counts are still holding, so we are hoping this delay just happens to be a happy reprieve instead of a dangerous situation. 

On a cheerier note, I have a funny story. My kids have never been in Utah in May/June. Our next door neighbor here has an enormous cottonwood tree. The twins kept telling me on Wednesday that it was snowing. I knew the temperatures were nowhere near snow temperatures, so I just reminded him it had only rained over the weekend. But he kept saying there were huge snowflakes in the air. Turns out it was just the cottonwood tree dumping copious amounts of cotton. It truly looked like it was snowing. My kids think the "warm snow" is pretty magical. 

Also, the twins graduated Kindergarten yesterday and Jack's last day was today. 

These 2 had the world's best teachers. They truly did everything they could to make it a smooth transition for them moving across the country and switching from homeschool to public school. I shed a lot of worried tears over how things would go for them and words cannot describe how grateful I am for these 2 wonderful ladies. Both Kevin and Cody absolutely loved school and are super excited to come back next year.