Schedule update

 Tony had an appointment with his Oncologist today. They are letting his counts come up this week, and then starting another round of chemo next Monday. It's the same chemo regimen he just completed on Saturday. But because most his blood isn't made up of cancer cells anymore, it shouldn't be near as severe. They said they usually do 2-3 rounds of this regimen before doing the transplant, so his transplant will either be beginning of January or beginning of February. They are still searching the registry for a full match. But if they can't find a full match, they will move forward with Tony's brother Brad who is a half match. Thank you for all your continued thoughts and prayers. We still have a long road ahead of us so we will certainly need them. 

A Remissive State

 We went down to Huntsman yesterday morning for a 7:30 appointment. They drew his labs and found out he needed red blood cells. So he watched a World Cup game on his phone while they did the infusion. (Red blood cells take about an hour and a half. Platelets take about 45 min). 

Soon after we got home, Tony's main oncologist gave us a call and let us know he'd received the preliminary results from the biopsy and it showed no cancer cells. So he has been given the ok to stop the oral chemo. We'll find out on Monday what the next steps are, but on the phone it sounded like they'll do another consolidation chemo before we get to the transplant. Thank you all for the thoughts and prayers. 

Waiting on Results

 Happy Thanksgiving everyone!

We just had a quiet Thanksgiving at home since Tony's blood counts are still low. He spent most the day watching world cup games. They've told him he has to continue taking the oral chemo until we get results back from the bone marrow biopsy. His biopsy was done yesterday. They also did a platelet infusion. He talked to another nurse about his mouth pain and they gave him a mouthwash with lidocaine in it and it has been helping him. But we're pretty sure it should heal up once his white count comes back up. But that won't happen until he stops the oral chemo. So we're hoping for results soon. Tony has an early appointment tomorrow with a possible infusion. Then, we meet with the doctors on Monday to talk about any results that come in and then hopefully we will know next steps. 

Long Day

We got to Huntsman at 11:30. They ran some blood tests but then took us back to the Acute Care Clinic. Tony's been having some pain in his mouth along his gums on the right side. They were concerned about it since his white count is so low. 

When we got back to the room, they redrew most of the labs that were taken at the hospital last night, just to make sure they have everything since the Tremonton hospital isn't in their system. They decided to do a CT scan of his face to see what is going on. They also gave him platelets, and then a few hours later decided he needed red blood cells as well, just to get us through the weekend until his Monday appointment. He hasn't had any more spikes in his fever today.

Now we are just waiting for his red blood cell infusion to finish so we can go home. It'll be another hour or so. The verdict on his mouth is that it's some kind of mild infection since the CT scan came back mostly clear so they're upping his antibiotic and giving him a specialized mouth wash to use for a week. 

In other news, Jack woke up with some ear pain this morning, so my mom took him to instacare while we've been down at the hospital. After a 2 hour wait, they finally were able to see him and diagnose him with an ear infection. It then took another hour or so to hunt down the antibiotics for him since most the area pharmacies are out of it. 

Just another normal day in the Roring household. 😉

Surprise Fever and a Different Hospital

Yesterday afternoon, Tony asked if I could run and get him some Tylenol from the store. I came back and gave him the Tylenol, and then I sat down next to him and put my hand on his arm. It was really hot. So I felt his forehead and then ran to get the thermometer. He had a fever. We called down to Huntsman and they asked us to get him to an ER right away. For the first time ever, they gave us permission to go to the ER that is right around the corner from our house instead of making the hour and a half drive down to Salt Lake City. We arrived to the ER and they immediately got us back into a room. Because his white count is basically zero, it can be really dangerous for him to have a fever, depending on what is causing it. So they ran a litany of tests.  Half a dozen blood cultures, half a dozen standard blood tests, a chest x-ray, a urine sample. Everything was drawn and read before we would have made it to Salt Lake City. Everything came back negative for infections (except the blood cultures because they take 24-48 hours to show results, so we're still waiting on those). 

Because we had given him Tylenol, his fever disappeared. In the end, they decided to let us go home and just check his temperature often. If the fever came back, they instructed us to come back to the hospital. Luckily, he was able to get a decent night sleep, and I checked for a fever 9 times throughout the night and it never spiked back up. 

Today we're down at Huntsman doing a routine blood draw and likely infusion. 

A Platelet Emergency

 We went down to Farmington for a blood draw appointment at 8 a.m.  The results came back that his platelets were under 6 (thousand) (too low to read). We went to my aunt's house in Syracuse to wait for the nurses at Huntsman to call and set up a platelet infusion. She took great care of us with watermelon and Belgium waffles while we waited. The nurses finally called and got us scheduled for an 11 a.m. infusion.

Usually his infusions are in the big infusion room in a small cubicle. But they took us to a private infusion room. (We are guessing because his white count is so dangerously low). Things ran pretty quickly and smoothly, but it still made today a long day. Tony was able to get a good nap in when we got home.  

Home again, Home again, jiggity jig

 

There's no one in the entire world who is happier than Tony is right now. He was 100% done being at the hospital. Dr. Stephens was the floor oncologist this week, and she has been so wonderful. She was great at answering all of our questions and really listening to Tony. We still have to go back down to SLC first thing tomorrow morning for a check up and Farmingon on Friday to check his blood counts. But the long drives are worth him being able to be home and sleep in his own bed (and not get woken up every hour throughout the night). He is done with the intravenous chemo, but still has 2 more weeks of his oral chemo. So he has a long road of having very low blood counts. Unlike previous chemos, they don't give him neupogen shots to bring his white count up. So we are going to need to be very careful for a long time. 

Thank you

 We have had an outpouring of love all week and we just wanted to stop and say thank you. From sugar cookies, to gas money, to flowers and cards, to a subscription to Sling so Tony can watch the World Cup this month, to phone calls, and texts and words of love and encouragement. We're overwhelmed by everyone's kindness, and we wouldn't be able to make it through without every single one of you. So thank you. 

Tony is feeling both encouraged and discouraged today. He is feeling a lot better physically than he has in over a week. But we were all very surprised by just how sick he got this time, and starting this all over for a third time with an aggressive chemo is just exhausting for him. He is so very tired of being sick. 

He was able to eat a little bit more today, and didn't have any fevers or headaches. He dealt with growing restlessness and anxiety, and is really hoping to be able to come home sometime in the next few days now that he's off the oxygen and not having headaches. He did a lot of walking around the halls today. 

He still hasn't lost his humor, and when I asked if I could take a picture of him, he gave me what he called a "Cody smile." What do you think? Similar?

A Bit Better

Tammy, John and I have all started taking turns sleeping at the hospital. The last few days have been really hard on Tony, but he is doing a little bit better every day. Friday was definitely his worst day. But I want to update how he is today.

He hasn't had a fever in the last 24 hours. He also hasn't thrown up, though he has had nausea and a few bad headaches. He's off the oxygen today too.  His red blood cells got low enough for a transfusion so he had one this afternoon. His kidneys are in much better shape today and his LDH numbers are finally coming down after being over 10,000 for 2 days. (Yesterday morning the LDH got so high that it inhibited them from getting an accurate read on anything else for a few hours). 

He has finally been able to start eating a bit more today, though its still not much. 

His nose started bleeding around 2, and they weren't able to fully stop it after more than an hour, so he also got a platelet transfusion. 

He completed his 4th infusion of chemo today. He has 3 more. The oral chemo he'll have to take for 21 days. 

We're hoping he'll be able to come home by this weekend. 

A Really Rough Day

 Today has been a day that has felt like 12 days. When I woke up this morning, the first thing I did was check the labs on MyChart to see how Tony's blood results were all looking. When I got to the report for his Lactate Dehydrogenase I was absolutely shocked. The upper limit is 253. Last night he was 285. This morning it was 8,912. Yes, you read that right. Needless to say, we all panicked, remembering the elevated plasma numbers he had this last summer that ended with pancreatitis. I called his nurse for an update and she let me know his blood pressure had been low overnight and he had thrown up for most the night as well. 

When I arrived at the hospital, I found out he'd also had a fever and had been on oxygen for a portion of the night. They did a chest x-ray early this morning and found that he has a partially collapsed lung. (Again, this happened in March as well). 

Shortly after I arrived, his blood pressure measured in at 86 over 42. They gave him a bolus (fluid with electrolytes given intravenously). They also went and got the materials to take his blood pressure manually instead of using the machine. It came back a tiny bit higher when they did that about a half an hour later. 

The doctors came in and said that the high LDH numbers is likely due to the body not being able to handle processing the amount of dead cell material from the chemo destroying the cancer cells. It's too much for his liver and kidneys so it's making all those levels skyrocket. They said they would give him a medication to bring down the level of Uric Acid in his body and that if that worked, they'd continue with today's chemo as planned. They also are giving him antibiotics since he's had a fever, just in case. 

His blood pressure came back up for a few hours, and his fever stayed down and he was able to get some good sleep.

Then his oxygen dropped back down to 86%, so they put him back on oxygen. His temperature also spiked back up to almost 103. And his blood pressure dropped again. 

His afternoon labs came back that the Uric Acid levels were back in the normal range so they decided to proceed with the chemo. He took the chemo pill at around 3, then had the intravenous chemo around 5:30. He slept most of the day until then. 

We ordered him some chicken broth and some apple slices and grapes and he ate a little bit. He was up for about an hour, and has now gone back to sleep. He's really not feeling well today, and we are worried the next 7 days will be similar. 

Hospital Hell

 We went down to Huntsman on Monday for an appointment with the Oncologist. They admitted him to the hospital, fearing that Tony's back pain may be a sign that the cancer has entered his spinal fluid. Here is an account of the experience so far. 

Monday:

Blood draw at 10:50.

Meet with oncologist at 12:30

Covid test at 1:00

Room opens up for Tony at 3:30 

EKG around 3:45

(We were told he'd be getting a picc line, starting chemo, getting an MRI and getting a spinal tap)

MRI happens at 10 p.m.

Tuesday:

The doctor that comes in the morning says he sees evidence of cancer in the spinal fluid, and that they will be doing a spinal tap today and putting chemo in to replace the fluid they take out.

Nothing happens.

A different doctor comes in around 2 to update us. He says there is no evidence of cancer in the spinal fluid. We're obviously confused.

A really nice doctor (3rd doctor of the day ya'll) came in and actually explained all the procedures to us (Thank you Doctor Thomas). But he also explained that there had been a miscommunication. It was now 3:00 and when they tried to get the spinal tap team over, they realized Tony's platelets are below 50(,000) and they they couldn't proceed. The Doctors had ordered platelets for Tony and they were actually already in the room about to be hooked up when they realized that by the time the platelets were in, and they waited an hour to take a new CBC to make sure they were above 50, the Spinal Tap team would have already gone home. So they were rescheduling for the next day.  The new plan was to give him platelets at 1 a.m. 

Tony's wonderful nurse had some words with the doctor that called her about the 1 a.m. platelets and convinced him to wait until after his morning blood draw so they'd know how many bags to use and so that he wouldn't get woken up to many times.

We receive word that they didn't get the MRI of the location they actually wanted to so they scheduled another one. 

Tony gets his picc line placed around 4 o'clock. They take the IV out of his hand. 

He gets his 2nd MRI at 9 o'clock.

No chemo. No spinal tap. 

Wednesday: 

They wake Tony up every hour or so throughout the night because his blood pressure is low. 

They end up taking his CBC at 3 a.m. and only order 1 bag of platelets even though he was at 21 and a bag of platelets usually only increases the count by 30. They wait an hour, test his blood again, and (shocker) find out he needs a second bag. They give him the second bag of platelets. 

Tony is half asleep when the doctor comes in so he isn't able to ask him many questions, and Tammy was stuck in a blizzard trying to get down to the hospital to spend the day there. 

(We had noticed in his MRI that it said the head joint in his hip/pelvis was partially collapsed due to lack of blood flow, and we wanted to ask the doctor about it because they hadn't said anything).

At 2:30, they came and did the spinal tap. They replaced the fluid they took out with chemo (cytarabine). I'll put pictures of the procedure at the bottom of this if anyone is interested and not squeamish about needles. (Tony said he doesn't mind showing the pictures since he was so curious about it before it happened to him, but wasn't sure exactly what to expect. Doctor Thomas did a good job of explaining, but a picture is worth a thousand words. Tammy did a great job taking pictures). 

They tell us the name of the 2 chemo's he'll be on (the oncologist told us on Monday but this time they wrote them on the board). They are Azacitadine and Venetoclax.

No chemo is given. 

Thursday (today):

Tony is exhausted. He hasn't had any breakfast or lunch even though its after noon because he's mostly sleeping. 

The doctors came in (4 people) and I asked about the partially collapsed bone from his MRI. The doctor was confused and said he didn't see anything in the report. Doctor Thomas (thank you again) walked over to the computer and pulled up the report and showed the Doctor. He said they'd follow up on it later. 

I also asked about a report that suggested he had a TKD mutation because we weren't sure what that meant. He also seemed surprised by this, and asked when the report came through(the answer is yesterday morning). He said he'd confer with the other oncologists and get back to us, but that they don't usually change much for a TKD mutation. 

Doctor Thomas came back and we filled out the consent forms for the chemo. (I also want to mention something here. Half the doctors here do not look at me at all, even when I'm sitting 6 inches away from Tony and he's half asleep. If you are a doctor in any field, please don't do this. Generally, the people that are staying day after day with their loved one are also doing everything in their power to help and knowledge is power, and being ignored completely by doctors is very frustrating. Doctor Thomas is the exception to this rule. He has always talked to both of us, and made sure both of us understand the procedures, the drugs, the side effects, and what to expect. He even gave me a handout on the new (to us) chemo drugs so that I'd better understand what they're giving him. I know he'll never see this blog, but seriously, we just really appreciate him when so much else here has been so frustrating). 

He said the chemo has been ordered and they should start him on it within the next 2 hours. We're hoping that this will help his severe back pain and his exhaustion levels. The chemo will bottom out his counts, but they are already so low so he's very tired. And once the chemo runs its course, he should be feeling a bit better in a few weeks. 

Initially they told us he'd be here in the hospital just to start all the tests and treatments but then that the chemo treatments would continue out patient, but this morning they said he will likely stay in hospital for the entire week of chemo treatments. So we're not sure about that anymore either. I guess we'll see. The intravenous chemo is a 7 day regimen and the oral chemo is a 21 day regimen. 

I'll finish with this, we found out the hospital bistro has punch cards so my 10th meal will be free. I wish I would have known about these months ago. To their credit, they have excellent sweet potato fries and fry sauce. 

Don't scroll down if you can't handle a picture of a tube going into a person's back. 

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The guy doing the spinal tap was really nice, and very knowledgeable and he said Tony was an absolute champ. The guy doing the MRI said the same thing. (His images came back text book because he's so good at holding still). In this first picture you can see he's slowly putting the chemo in through a syringe. Tony said the spinal tap was way less painful than a bone marrow biopsy. And he didn't end up getting the headache they warned him he may have, so it's a good indication that they balanced the fluids perfectly. He also didn't hit any nerves so there weren't many long-term effects throughout the day. Tony was pleasantly surprised. 

DLI updates

 Tony went in for his second DLI on Monday October 3rd where they put in 10 times the amount of cells. We were feeling really hopeful and he was feeling really good. 

Over the next few weeks he had a couple appointments where his blood counts were trending steadily down, and he started to have a similar back pain to what he was having back in February when he was re-diagnosed. We started to worry, but the doctors assured us the counts can drop momentarily as a side effect to the DLI. But then they moved his bone marrow biopsy up by 2 weeks and we really started to worry. 

On Monday October 24th we went in for his Bone marrow biopsy. His counts were dropping even more rapidly and they scheduled us to come in Thursday for another blood draw to monitor. We found out at the end of the week that his cancer has relapsed. The biopsy showed 86% of his marrow consisted of blasts.