A Magical Christmas

Tony's work family gave us the biggest Christmas we've ever had. The boys were absolutely thrilled with the mountain of gifts from so many members of his work teams. It's hard to put into words how grateful we are for all of them. His entire work family had been so supportive through this entire endeavor. 

Jack has been asking for a hoverboard for years, and his wish finally came true. Cody got a real guitar in his actual size, and Kevin got both Gabby's Dollhouse, and Bluey's house. He spent the majority of the day playing with the two houses. Not pictured are the gifts for Tony and I (I always forget to take pictures of us adults). Tony was able to get new controllers and a headset for his Xbox, and I got a Apple Watch SE that I am absolutely thrilled about.

Transplant update

Tony's been doing really well on this round of chemo. His counts have stayed up, and we've been able to see family for Christmas. 

We got an update on his Transplant. They are looking at moving forward with it at the end of January. Right now, their guess is January 24th for checking into the hospital to start the chemo. The transplant will happen around 5 days later. He'll be in the hospital for about 3 weeks, and then he'll move to some hospital housing for up to 3 months. His parents and I will take turns staying with him during that time, and the boys will be able to visit during the day as long as they are not sick. 

After day 100, they will do 2-3 rounds of the same chemo he's been doing now, just to ensure the cancer is completely gone. He'll be on an immune suppression drug for at least 6 months, but should be able to start feeling normal by the 9 month mark. 

The next 6 months are going to be especially difficult for Tony and for our family, so we would appreciate all the prayers and words of encouragement. I know we've been saying that for nearly a year now, but we really do appreciate all the love and support we are constantly receiving. Thank you!

Another Round

 Tony started another round of chemo on Thursday. He will have an infusion every day for 7 days. Then he'll take the oral chemo for another 7 days after his infusions are over. (The last round he had to take for a total of 21 days, so he's happy it's shorter this time). 

This round has been much easier on his body than the last round, but it is still making him quite tired, and it took us a couple days to figure out the best way to keep the diarrhea under control. 

This entire round of chemo will be done outpatient, and they've been kind enough to schedule any weekday infusions at the Farmington clinic so we don't have to drive as far. Today and tomorrow's infusion are in Salt Lake City. 

We will meet with the transplant team on Monday after his infusion to discuss next steps. We're hoping this will be the last round of chemo before the transplant. 

Hopefully we will have a very long update post on Monday with details from that meeting. 

Match Found!

 We went down to Huntsman today for Tony to start his next round of chemo. His blood counts haven't come up to a safe range for starting the chemo so they are putting it off for one more week. He is now scheduled to start next Monday. He'll finish this round of chemo on January 2nd if everything goes as planned. 

But we did get a bit of good news today. The bone marrow transplant team has found him a full match on the Be The Match registry and he has agreed to donate. He is on standby and waiting for the transplant dates to be set. This is a huge step in the process so we are grateful for him and his willingness to donate. 

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. 

*

*

*

*

*

*

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. 

Creamed Corn

On Friday, Tony and I left for the hospital at 8:30, right after getting the boys to school. We got to the hospital just before 10 and they called us back about 5 minutes later. They set us up in a private infusion room (all his other blood and platelet infusions have been in a large shared infusion room). The first order of business was to put a midline port in his arm. By happenstance, the guy putting it in went to high school with me. Tony much prefers this procedure to the bone marrow biopsy, but he still dislikes the pain the lidocaine causes in order to numb pain. 

 

We were initially told that the DLI would be around 11. But they quickly found out he didn't have a recent enough type and screen, so they drew the labs for that and pushed the DLI back to 12:15. They got the type and screen done but then the guy delivering the Lymphocytes got caught in all the construction traffic and didn't arrive until 12:45. He brought in this awesome R2D2 looking thing. 

The cells were cryofrozen and they keep them frozen until right before the infusion. He wasn't allowed to thaw the cells until the doctor signed off on it. But... the doctor was in meetings. So this awesome guy (Josh) had to just hang out with us and Tony's nurse until 2 o'clock when the doctor finally got out of all of his meetings. Then this guy walked us through all the steps. It was a very interesting process.

This metal case holds a bunch of cassettes.

He then pulled out the one cassette that actually had anything in it. (Since this is his first DLI they give a very small amount of cells to make sure he doesn't have a strong reaction. His next 2 doses will be a higher number of cells)

It is such a small number of cells (a million per kg of Tony's weight) that they actually have to water it down to make it a large enough volume. So it looks a bit like pink lemonade.

It's then thawed in a water bath (sort of like the machines they use to warm up baby bottles, but for bags of blood instead 🧛)

And then the big moment we'd all been waiting for took a grand total of 4 minutes. It was a very small infusion so it didn't take very long. 

We then had to wait to make sure Tony didn't have a reaction, and he had to get the midline port removed. So even though we spent most of our day at the hospital, it's actually a relatively quick and painless procedure. We were very grateful for his wonderful nurse who was one of the kindest people we've ever met, and for Josh (the one who handled the Lymphocytes) who spent over an hour entertaining us with facts and stories. And we are so extremely grateful for everything Kevin was willing to go through in order to give his donation from all the way over in Germany. This procedure is far and away less painful/dangerous than going through another bone marrow transplant. 

As for the title, we asked what some of the symptoms we can expect would be. The nurse and Josh's immediate response was creamed corn. They said the preservative they put in the cells to make sure they stay fresh would make Tony's breath smell like creamed corn for about 24 hours, and they were totally right! So bizarre. 

DLI Update

On Monday, Tony's bone marrow donor (from 10 years ago), Kevin, made his lymphocyte donation from Germany. They then overnighted the cells, and Huntsman received them on Tuesday. 

We went down to the hospital on Wednesday and met with the transplant team. They went over the DLI process with us again, and we signed paperwork to give the doctors permission to treat Tony with this treatment. They took lymphocytes (white blood cells) from Kevin and these cells should boost Tony's immune response to the cancer cells. His most recent bone marrow biopsy showed only 0.3% blasts (He had 79% blasts back in February when he was re-diagnosed). The lymphocytes should be able to fight off the low percentage of blasts. There are, of course, some risks involved, but this treatment comes with far less risk than a second bone marrow transplant. 

We will go down to Huntsman tomorrow (Friday) for his first DLI treatment. They will do 2 or 3 rounds of the DLI depending on how his body responds to the cells. The dose of Lymphocytes gets higher for each cycle. If he shows any signs of Graft vs. Host disease (GVHD) then they will stop the treatment. 

104.8

 On Friday we went in for a blood draw. His platelets came back at 20. They usually infuse if they're below 15. But this isn't our first rodeo, so we emailed his doctors to request an infusion for the next day. They gave us a bit of a hard time (he had another appointment scheduled for Monday, but the last time we waited until Monday his counts were so low they were unreadable), but they finally agreed to get him a blood draw appointment for the next day (Saturday). The only available appointment was at 7 a.m. (Though the hospital seemed to miss that memo since no one was there until almost 7:20). At around 7:30, they took his vitals and realized he had a low grade fever of 100.8. They drew his initial labs, and then let us know they would (eventually) be admitting him since his white count was at 0.05 and his neutrophils (the white blood cell that fights illness) was at 0%. They drew a bunch of blood cultures and did 2 different Covid tests. His platelets came back at 9 (again, why they argued with us about getting him in the next day just makes my blood boil), so they gave him an infusion while they waited for a room to open up. They got him up into a room at about 11. All the Covid tests came back negative, but he didn't test positive for Parainfluenza (the flu). By 2 o'clock his fever was up to 104.8. And for the next five hours we fought to get it back down. They eventually had to put ice packs under his armpits and a cold washcloth on his head. 

They eventually got his fever down to a low grade one (100.5). But he had a rough night and morning with it spiking again. It finally seems to have broken for real today, but now he's just exhausted from the last 24 hours. They've taken a few more blood cultures, and plan to do a CT scan if he gets another fever. They just want to make sure we're not missing anything. But the flu virus can certainly make his fever spike like this. It's likely the fevers will keep happening until his white counts pop back up and his body can fight off the virus. 

Last chemo

 Tony started his last round of chemo last night. We arrived at the hospital at 11:30 in the morning and he didn't get into a room until 7:30 so it was a bit of a long day. But everything is running smoothly so far and he should have his last dose early Sunday morning and then be able to come home. In 3 - 4 weeks, they will give him his first DLI treatment. 

No hair...again

We met with the transplant doctor on Monday, and finalized plans to do a donor lymphocyte infusion (DLI) rather than a transplant. That means that Tony will only have one more round of consolidation chemo, and won't have anymore chemo after that! Once he recovers from this next round of chemo, which should start July 21st, we'll move forward with the DLI. We're still working on the timing on the DLI because they need to schedule a time for Kevin, Tony's original bone marrow donor, to donate some lymphocytes. This process should be much easier on Kevin than the original harvest of marrow. It will be similar to donating plasma or dialysis. The idea behind the DLI is that they give Tony Kevin's lymphocytes (a type of white blood cell) to help activate Tony's immune system. They should attack any remaining cancer cells left after doing all of this chemo. They typically do 3 rounds of DLI about a month apart. If Tony starts to develop some GVHD (graft vs. host disease) then they stop the DLI. Here, having a little bit of GVHD is a good thing because that means they've activated Tony's immune system to a point where it will start attacking the cancer cells, and they won't give him anymore lymphocytes. We are so grateful to not have to do another bone marrow transplant and are praying for the DLI to work.

Tony's hair has started falling out again. It was getting to the point where we could pull it out in chunks again. So it was time to shave it off again. Here are some lovely pictures with his bald spots.

ER and Platelets

 Tony's appointment today was at 4 PM in Farmington, and because he was the final appointment, it took about an hour before he got blood results back, and at that point he was almost back up to Tremonton. An on call doctor from Huntsman called us to let us know his platelets were down below 6 again (6,000). So they were too low for their machines to read. The doctor let us know that anytime they drop below 10 he is at risk of spontaneous bleeding in the brain which would be (obviously) very bad. But they were all closed for the evening and he couldn't even reach a scheduler to see if he could be scheduled for the morning, so he suggested we head to the ER. We arrived around 9 o'clock PM. They hung his platelets at around 12:30. His platelet infusion finished at about 1 a.m. 

Now we are just waiting to be released to head back home and get a few hours of sleep. 

Red, White, and ......Platelets

 Tony finished his most recent round of chemo on Sunday June 26th. We've been going down for blood draws to check his levels every other day. When we went in on Friday, his platelets were low, but not quite low enough for an infusion (They were 24 and they have to be below 15 for an infusion). (His white blood cells, specifically his neutrophils are at zero as well). They told us they had scheduled an infusion for Monday morning (today) at 7:10. We were definitely a bit concerned because he was already so low and they were putting it off several days without checking his blood. So we slept at a friend's house in Bountiful last night (Thank you Shay!) and made it here bright and early. They drew his blood and low and behold, his platelets are below 6 (the machine can't read any lower than that). So he's getting an infusion now. His neutrophils are still zero, but his red blood cells aren't low enough for an infusion (He didn't end up needing a red infusion on the last chemo round). 

For now, we are set to meet with his transplant team next Monday to discuss the DLI treatments. He is also scheduled for July 21 to start his final maintenance chemo. And then there should be 3 DLI treatments in total. Then (we think) he should be done with everything. 

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. 

Specific Prayer Request

 We went down to the hospital Thursday to supposedly start Tony's next batch of maintenance chemo. They did a covid test and a blood draw to make sure everything was good to start. The results came back that his liver function is over 3 times what it is supposed to be. So they asked him a litany of questions trying to figure out why (including asking if he got drunk a lot on the cruise boat😂) But they couldn't come up with a distinct reason. So they decided he needed an ultrasound of his liver before he can start chemo. Initially they were going to do the test same day or next day, but then they checked the schedule and their first available appointment is on Wednesday. So right now, the plan is to do another blood test on Tuesday, then ultrasound Wednesday, and then if everything is A ok, he will start the next round of chemo on Thursday. (The doctor did say she suspected it could just be caused by the cold he has right now). 

Now, on to the specific prayer request. They did an extra test while we were there on Thursday. The test is called a chimerism test. They believe there's a chance that some of Tony's original cells started to return and that is why his cancer returned. If that is the case, they can do a treatment called a donor lymphocyte infusion. They would take cells from his original bone marrow donor, and infuse them to try and kick out Tony's cells. They got test results from Tony's original bone marrow donor, and now they have tested Tony. So in 2-3 weeks they should know if this is a possibility. Donor lymphocyte infusions are far less intense than doing another bone marrow transplant, so we would really like this to be the case. 

Disney Cruise

 After rescheduling 6 times, we were finally able to go on our Disney Cruise. We were thrilled that the Kennedy's were able to join us. On Saturday, we took the rental car back to the airport and climbed on a shuttle to the port. 

It was a bit nerve-wracking waiting for our port covid test results to come back, but they all came back negative and we were able to board the ship. 

After a quick meal, we went straight to the pool deck. Swimming and unlimited ice cream are some of our favorite things on the ship. 

 

Then by some fun happenstance, a SpaceX rocket was launching around the same time we were getting ready to set sail, so we got to watch it. 

Then Matthew, Lara and I went to the fancy French restaurant on the ship called the Remy. Tony decided a few weeks before the cruise that he would rather just eat in the regular restaurant with the kids and then get them to the kids club since his appetite hasn't been great and it's an 8 course meal. It was a really fun experience. 

While we were at dinner, Tony and the kids went to see the show in the main theater. It was a ventriloquist/magician. Jack was actually called up on stage and got to help with a magic trick involving a rubics cube. Afterwards, he let jack keep the rubics cube. 

Day 2 we decided to all wear our matching shirts. It was a day at sea and we took full advantage of all the activities. Tony and Kevin did an animation class, Jack and I were part of a game show, and we ended the day with a production of Aladdin. We also enjoyed finding photo ops where they would add digital characters to the photos. Our servers were awesome and learned very quickly that my boys love fruit, so they got an endless supply of it. And since Doctor Strange: Multiverse of Madness was playing on the ship, they had appearances from Doctor Strange throughout the ship.

Day 3 was another day at sea. We went up to the pool and got some fun Doctor Strange themed photos.

Then we, of course, got ice cream on the pool deck. They had movies playing on a giant screen while we were swimming as well, which is a fun treat. We had Toy Story playing this day. We also popped in for extra fruit on the pool deck around lunchtime. 

Then the kids went to kids club and Tony, Lara and I went to a napkin folding class. It was a lot of fun.

We decided to wear our matching Star Wars shirts this day and we got some really fun pictures throughout the day. The boys loved talking with Mulan, and they were really excited when our server made their menus into an origami bird. 

The performance in the evening was a magician that completely blew our minds. He was amazing.

Day 4 was spent on Tortola in the British Virgin Islands. We decided to brave the island in a rental van which turned out to be quite the adventure. We took a wrong turn up a very steep road and ended up burning rubber, getting stuck, and then having to back down the hill. The roads on Tortola are extremely steep. We were given the advice to never go under 40 while going up the hills, which was an added adventure since I was already driving on the left side of the road in an American style minivan. The rental car guy said it's so you can easily peer over the edge while you are driving up the mountain. yeesh. After very specific navigation by Matthew, I was able to drive us to the top of the mountain to Sage Mountain National Park. We went on a short hike to a fun view of the island. It was a bit foggy, but occasional the fog would clear and it was quite beautiful. 

After our hike we popped into the visitors center for souvenirs and banana shakes. While we were drinking our shakes we found an adorable lizard. 

Once we were refreshed, we decided to brave the steep hills again and head for our next destination: Brewers Bay. I had initially wanted to go to Smugglers Cove, but the Rental car guy suggested Brewers Bay and I never ignore a locals suggestion. It turned out to be the right choice because it was absolutely spectacular. We were the only ones on the beach.

The water was crystal clear and we soon discovered that there was an incredible reef a short swim from shore. We first came across an enormous school of fish. And then we saw a barracuda!!

The reef was a real treat. I only got a couple pictures because I was so distracted by the fish. Tony found a really pretty shell and I found a dead sea urchin. We took a good picture of them and then put them back. Fortunately we had brought enough masks that everyone that wanted to got to snorkel out to the reef. 

The other fun thing about this beach was the pelicans. They would dive into the water to catch fish. 

We somehow made it back to the ship in our rental van without any incidents. (the appearance of the rental van should have been our first clue that the roads were treacherous. The passenger mirror was being held on by duct tape, the bumper was missing and there were huge cracks in all corners of the van). But we returned it in the exact way that we found it. 

The fun didn't stop there. It was pirate night back on the ship. We, of course, packed all our pirate gear and enjoyed all the festivities in full pirate garb. 

We, of course, enjoyed our pirate dinner, complete with light up skull cups filled with smoothie. And of course, ample amounts of fruit. Then we actually put the kids to bed and watched Doctor Strange, then got the kids back up for the fireworks and the pirate show on the top deck. Unfortunately, our plan didn't work exactly as planned because Kevin and Jack refused to wake up. They were sad the next day when they realized they had missed out. 

Day 5 was another Island Day. This time we were at St. Thomas on the US Virgin Islands. Matthew and I left the ship early to pick up the rental car, and then we picked up Tony, Jack and Cody. Matthew dropped us off at our zip lining adventure and then headed back to the ship to pick up Lara, Meg and Kevin to head to the aquarium. Zip lining was a blast. Jack barely met the weight requirements to zip alone, and Cody got to take turns tandem zipping with me and Tony. 

On the final zip line, there was no weight requirement, so they let Cody zip alone. He was absolutely thrilled. It was all he talked about for days. 

Meanwhile, Kevin was enjoying the Aquarium with the Kennedy's. He had a great time. They had a unique experience with an Iguana that ended up stealing their table while they were eating lunch. The iguana's are extra assertive on St. Thomas. 

Unfortunately, from the moment I woke up this day I felt seasick. Throughout the entire ziplining I felt like I was going to vomit. So we skipped our afternoon plans of visiting the pirate museum and just went back to the ship. I ended up taking a nap until dinner, but then I felt much better, which was fortunate because it ended up being one of my favorite meals. It was also a super fun night at Animators Palate, where they had us draw figures that they then animated. The kids were especially excited to see their creations on the screen. Kevin's was the green one in this picture. Our servers also started giving the kids plates of maraschino cherries for dessert. They were seriously the best servers ever. 

This was our SpiderMan outfit day. We got another opportunity to talk to Mulan. She is awesome. There was an acapella group performing in the theater this night but we decided it would be best for us all to go to bed early instead. 

Day 6 was another day at sea. They had an open house in the kids club in the morning so I joined Kevin down there. They had a really fun experience with BB8.

Jack and I went mini golfing at the back of the ship in the middle of the day. It was pretty windy but it was still really fun. The ship was going especially fast this day. I also wanted to throw in one picture here to show you how they had the boys beds configured. During the day this was a couch, but then at night they would switch it into 3 beds. We also got accidentally upgraded to the family deluxe verandah room, so that was especially nice. 

Then they boys got to meet Repunzel. And during dinner they ran into Thor when they went for a potty break. 

That night was the performance of Frozen. We always went a half hour early to every performance to make sure we got good seats. 

Our final day of the cruise was spend on the Disney Island, Castaway Cay. Tony, Jack and I got to go parasailing, which none of us have ever tried so it was really fun. They actually strapped all 3 of us into it at once. Jack was definitely a bit nervous but he really enjoyed it in the end. Parasailing is surprisingly peaceful and quiet. 

After parasailing (Kevin and Cody were in the island kids club while we were gone) we went all together to the waterslide. 

During lunch I think the kids ate at least 10 mangos total. They also loved the unlimited island ice cream. We also got some really fun pictures while we were ashore. 

Once back on board we changed into our matching Marvel shirts. The boys wanted to go up to the pool deck for more fruit, and one of the employees stopped by our table and turned the napkin into a dog that he had the twins feed with fries. They thought it was hilarious. Everyone was seriously so nice on the ship. Oh, I forgot to mention earlier that Jack got special permission to attend either the kids club or the tweens club. He enjoyed having the choice and still went to both after he was given the option. 

The performance this night was Believe. I volunteered to stay with a sleeping Meg since I needed to re-pack our stuff and catch up on sleep myself. 

These last 2 pictures are of our matching marvel shirts, and then Kevin and I got pictures in our matching Disney sweaters that my friend Jamie made.

Overall it was such an amazing trip. We had great weather, and had wonderful interactions with everyone on board. The ship was a little over half capacity, so it didn't feel too crowded.