He's Home

 Tony was finally able to come home today. It's day +73 from his transplant. They let us know they he'll be getting a bone marrow biopsy in 2 - 3 weeks so they can see if there is any detectable cancer. So far, all his blood counts have been looking pretty good, so we're expecting/hoping for good news. 

He's Coming Home

 The doctors gave the ok for Tony to come home Thursday after his appointment. He'll then have one appointment every week at Huntsman for the next long while. We're very excited for this phase of his treatment to be over and for him to be home with us full time. 

Oh the Irony

 The ironic part about my last post is that Tony ended up in the hospital a day after I posted. He came down with a fever Saturday morning and went up to the hospital. They started him on antibiotics and gave him some fluids, and then did a bunch of tests on him. They found out he had a bit of bacterial sinusitis and the Metaphneumovirus. The fever actually broke on Saturday and he didn't get any more fevers after that. The antibiotics seemed to really kick the sinusitis. They held him over the weekend because his blood pressure was pretty low, especially overnight the first two nights. He was able to leave the hospital this afternoon and is back at the hotel now. 

No Update means Good News

I know it's been a minute since I've posted an update, but in this case, no news is good news. There's been very little to report. Tony's counts are all coming up. His platelets and White blood cells are actually in the normal range and have been for about a week. His red blood cells are coming up slower, but are definitely upward trending. So everything seems like good news. 

What a Week

 It's been a busy week. Jack turned 11 and Tony moved from the Hope Lodge to the Marriot Residence Inn. My awesome uncle works here so we're excited to get to see him more. He made sure we made it into a great room for our 2 month stay. We're super grateful for him. Now that we're at a hotel, the kids can stay with us through the weekend. We're working on catching up on the Mandalorian now that we can all watch it together. Tony and I laughed this morning because the Residence Inn has an amazing hot breakfast every morning. We took the boys down to breakfast this morning and they all picked cereal. 😂 But Tony and I enjoyed omelets, sausage, potatoes, and waffles. We did all agree on the fresh cut cantaloupe though. I'm especially grateful that I don't have to go down to a shared kitchen to prepare food and Tony's grateful he can eat in bed when he's not feeling well. 

Tony's blood counts are all coming up on their own. The doctors are feeling very confident in his progress. We're happy to be that much closer to Tony being able to come home. 

I think I didn't update here, but Kevin broke his arm on March 3rd. He has an appointment with a specialist tomorrow to double check that he doesn't need surgery, and then change out his splint for a cast. He's one brave little dude and has taken this whole thing quite well. But he is absolutely ready to be done with the splint and sling.  

Another Rhino

 Tony's had a few low fevers, a bit of a cough and the sniffles. His doctors did a few tests and found out he has the rhino virus again. It's basically the common cold. They aren't super worried about it, as his white count is high enough to fight it off and he's already feeling quite a bit better today. 

We found out today that once his white count reaches 2 (2,000) and his platelets are at 100 (100,000) then they will start giving him an oral medication that will target the FLT3 mutation that he has. He'll take that medication for the next 3-5 years. It was good to hear that they had a plan to fight against that particular mutation, as it can make relapse more likely. 

Freedom

 Tony was finally able to leave the hospital yesterday. He's having a very rare complication called CIPS. It's caused by the immunosuppression drug that he is on. It causes severe nerve pain in his lower legs. They can't pull him off of the immunosuppression drug so we, for now, just have to manage the pain with pain medication until they test his tacro levels on Monday.

We were able to stay with my Aunt Michelle. And Tammy brought Jack and Kevin down to stay with us. (Cody is out of town with my brother and parents). We have watched 3 of our favorite animated movies with them (Emperor's New Groove, Mitchell's vs. the Machines, and Big Hero 6) and we're working on our third puzzle. 

Tony's been able to eat some really great food that Michelle has made for us. It's much easier to take 12 pills in the morning when you're eating some delicious crepes.  (He has to take 23 pills a day and he's already very sick of all the medication). He's also been able to get some really good sleep. Michelle is letting him use a heating pad to help with his sore legs. 

My Oncologist Does My Hair

 We shaved the rest of Tony's hair off. It was coming out in clumps. Now he can wear this lovely shirt.

The doctors said he should be able to come home either tomorrow or Sunday. 

Engraftment

 The new stem cells have officially engrafted and have started making new cells. In order for Tony to leave the hospital, his neutrophils (a specific kind of white blood cells) have to be above 500 (.5) for three days. Today was day one of that. He's very excited about it, but he's still not feeling awesome. As his white counts come up, he should not have as much throat pain as the sores in his throat and stomach heal, but he's still on oxygen and he still has some pain in his legs that we haven't figured out the cause of. The team of doctors are guesstimating he'll be able to leave the hospital on Sunday. 

Another Hospital Birthday

 Tony is not feeling super well today, but he is super grateful for all the thoughts and prayers you've been sending his way. His white count has been at zero for weeks, and today was the first time we saw any movement. It's a small movement, but he finally has a readable amount of cells! This should mean that it's only up from here. 

Tony's mom door dashed him his favorite jamba juice. His throat has been hurting quite a bit, so it's been difficult for him to eat. 

He also received a lot of well wishes and cards, so thank you to everyone that contributed to making his day brighter. 

Tony is still on oxygen, and is definitely sick of being attached to it all day and night. They tried to wean him off of it a few times, but his levels continue to crash when he's not on it. They did another CT scan today that showed he is improving, so they're pretty hopeful he'll improve over the next few days. 

Tony's hair is falling out. We weren't entirely sure if it would on this particular chemo, but it appears the moment has arrived. It's been coming out in large clumps. We're planning on shaving it off tomorrow. 

Trouble Breathing

 Tony had a rough night last night. He couldn't sleep, and his body decided it didn't know how to breathe anymore. The doctors were pretty sure he had some liquid in his lungs so he did a EKG and a CT scan this morning. The CT showed pulmonary edema which basically just means he has liquid in his lungs. 

They called in a speech pathologist to check to see how he is swallowing to make sure the fluid isn't getting in that way. She suggested we buy a supplement called Healios to help heal the sores in his esophagus. But it's only sold in one store in all of Utah. So my mom ran to that store and brought it down to us. He took the first dose and feels like it's already really helping with the sores. 

The next thing they decided to check was his heart. They did a blood test called a BNP that can check on heart function. The goal is for the number to be under 100. Tony hasn't been under 100 but the highest he's been before today was about 270. Today it was over 1400. 

So that seems to be the problem.

They ordered a echocardiogram. We're still waiting on the results.

They've also given him a bunch of lasix that should help his body get rid of all the extra fluid in his body. Because of his heart, the fluid is retaining in his lungs. 

He hasn't been able to get off oxygen yet, and he'll have to sleep with it tonight and then they can recheck everything tomorrow morning. 

The nurses keep laughing about his "Christmas tree" IV pole because there's so many different bags hanging on it at all times. He's often had 6 different IVs going at a time. 

We've been really impressed with this specific team of doctors. They've really been on top of everything. Anytime anything seems slightly unexpected, they jump right in to figure out the cause and work on all possible solutions.

Tony has had lots of hospital stays in the last decade, and there was an Olympics for doctors, this team of doctors takes the gold.

Puppy dog eyes

Tony had a pretty bad migraine yesterday, which makes his vision funky. But after it went away, he noticed there was still a oval shaped spot in his vision. When he mentioned it to the doctors this morning, they called in a ophthalmologist. It turns out he has leukemic retinopathy - this does not mean the leukemia has spread to his eye. What this means, is because the chemo has caused his blood counts to be so low (in this case, the platelets), he has had a bit of bleeding in his retina. 

He posed for a puppy dog eye picture since his pupils are dilated. 

They're likely going to increase the bottom number that determines when he gets platelet infusions. She said it should heal on it's own after several weeks, but he'll get to stare at the spot until it does. 

Flowers

 Tony had a great day yesterday. He woke up feeling alright and was able to order breakfast and eat it. He even had a very normal lunch of enchiladas. He was in great spirits for most of the day. 

One of the nurses made everyone on the floor a bouquet of pipe cleaner flowers. Aren't they adorable??

He got platelets yesterday and this morning he got red blood cells. He was hooked up to six different fluids this morning and has been on five for most the day. His white counts continue to be almost zero. 

Today has been a harder day. He woke up with a migraine and ended up throwing up. He's felt more nauseas and tired all day, and is feeling a bit discouraged. He was hoping after the good day yesterday, that it was only up from here.

If it eats through the tube, why are you putting it in me?

 Tony is on a medication 24/7 starting yesterday. It's called tacrolimus and it's an immunosuppressant that is used to prevent graft vs. host disease. The IV tubes are thicker and blue because it eats through the regular IV tubes. 

Tony isn't a big fan of having to walk the halls and shower with an IV pole attached to him. But today he was trying to remind himself that if all goes well, he's a third the way done being in the hospital. He should be able to leave in about 2 weeks. 

The doctors have been happy with how his body has reacted so far. Nothing unexpected has happened, and that's the best we can hope for. His heart function has been improving, and he's still able to walk and to eat.

His white blood counts have completely bottomed out and his platelets were really low today, so we're pretty sure he'll get a platelet infusion first thing tomorrow morning. 

The Next Chemo

 Today and tomorrow, Tony is getting another chemo (cytoxan). This one won't hurt the new cells, and is used specifically to target T cells. The hope is that it will prevent severe graft vs. host disease. They're giving him a lot of fluids and a specific drug that helps protect his bladder. Today was the first day they used all 3 lumens in his port at the same time. 

The doctors have been nervous about his heart this week. He consistently has low blood pressure, especially through the night. They've been giving him several bolus infusions to try and bring his blood pressure up. 

For the most part, Tony's being doing ok. He's had a few bouts of nausea, and he's extremely tired, but he's been able to walk the halls several times a day each day, and usually gets 2 full meals in. The doctors are expecting this weekend to be harder on him. 

We found out his blood type won't fully change over to the donor's blood type for about 6 months. So they have to do blood typing every time they give him an infusion instead of every 3 days. 

Happy New Birthday

 While waiting for the transplant today, Tony got a foot massage. She did a lot of reflexology stuff and Tony was really impressed. 

The transplant started at exactly 3:11 and was finished by 3:20. We were all shocked. Transplants are very different now then they were 10 years ago. 

Here are a few of the differences:

Ten years ago Tony was given 14 large syringes of stem cells (3 million cells) over 2 1/2 hours. The marrow had been harvested from his donor by making between 50 and 100 punctures into his lower back and drawing out the marrow, and then separating out the stem cells. 

These pictures are from ten years ago.

Now, what happened today. The donor was given a neupogen shot to help his body produce more stem cells and shove them out into the blood stream. Then he did a procedure similar to dialysis. They drew blood from one arm, spun the stem cells out, and then put the blood back into the other arm. Then they gave Tony 102 ml (millions of cells) in a small IV bag. It took less than 10 minutes. These pictures are from today. 

Afterwards, the nurses came in and sang Happy Birthday to him and gave him a gift. 

Now he'll have 3 birthdays. His real one is in 2 weeks. His 1st new birthday is December 12th. And now he has a third on February 7th. 

Tony's feeling pretty good still, but the Doctor said this morning he'll start really feeling the effects in 3 days or so.

Fun fact: Tony's donor is a different blood type than him, so his blood type will switch over to the donors. 

Popsicles

 Today was Melphalam day. Tony's mom is down in Salt Lake with him today. The Hope Lodge made them check out at 9 o'clock this morning, but they didn't have a room available at Huntsman for him yet, so they ended up waiting in one of the little living rooms they have there. Tony slept on the couch there for awhile while they waited. They finally got all checked into the hospital around 2 o'clock this afternoon. They gave him a couple pre meds and then they had him eat popsicles starting twenty min before the chemo, during the twenty min they administered the chemo, and then for twenty min after the chemo. They said they've found that sucking on popsicles during that time makes mouth sores less horrible with this chemo. 

The doctor said he's likely to lose his hair with this chemo. He's hoping it'll come back straight again. He hasn't been thrilled with how curly it is now. He said he feels like it looks messy all the time. I think its cute. 

Tomorrow is the big day. The latest we heard is that the transplant will be around 3 o'clock. Tony can have 2 people with him and since Tony's parents couldn't be there ten years ago for his transplant, they wanted to be able to be there for this one. So they're going to video call the boys and I from the hospital. 

The moment feels a lot bigger than it's going to look. (It'll just look like a regular blood infusion). But we want the boys to see it so they can understand exactly what is going on. John and Tammy have promised to also take pictures for ya'll so I can post them here on the blog. 

Harsh Chemo

 Tomorrow's chemo is a different story from the one Tony's been taking the last 5 days. Tomorrow's chemo is a single dose of Melphalam. It is a really strong chemo. It will be administered over 30 min. During that 30 min they will have him suck on ice chips to hopefully prevent too many mouth sores. The chemo has a half life of 30 min (half of it will be out of his system 30 min later. Then half of the remaining in the next 30 min and so on). It's going to cut down all of his blood counts extremely fast to prepare for the stem cell transplant the next day. 

Mild Chemo

 Because Tony's been given so much chemo and radiation over the years he's had treatment, his organs have suffered some damage, particularly his heart. So when we started the transplant, his doctor let us know that the chemo would be milder than what he's used to. We weren't sure what to believe says symptoms are often hard to predict, but we've been pleasantly surprised. Today was day 3 of chemo. He's been very tired each day, and has slept for most of the day. But he hasn't had any other symptoms. Not even nausea. 

We've been staying this week at a place called the Hope Lodge. It's for people that are undergoing out patient treatment that live far from the hospital. It's been nice to stay close to the hospital. Tony's been enjoying eating at different little restaurants nearby. The first day, he had a delicious pad thai type dish at the Oasis Cafe. The next day he had Crown Burger, and yesterday he had a giant tempura shrimp and rice bowl at Yoshi's Japanese Grill. Most of the time, he has no appetite, but this chemo hasn't seemed to affect it. This is the most I've seen him enjoy food in months. 

At the Lodge, we're not allowed to have any food in the rooms. If you want food, you have to go downstairs to the community kitchen to make it and then eat it in the dining room. This morning, I tried to bake some almond croissants from Trader Joes. (One of Tony's favorite breakfasts. You let it rise overnight and then bake in the morning). After sitting in the kitchen for ten minutes waiting for the oven to preheat, I figured out it was still completely cold. I found out later this morning that that particular oven doesn't work. So I preheated a different oven, but we'll probably stick with microwavable meals from trader joes from now on. It's frustrating to cook in unfamiliar kitchens. 

We're going to be able to go home for one night tonight, and then we'll be back for his next chemo infusion at 11 in the morning. Then we'll stay at the hope lodge until Tony checks into the hospital on Monday. 

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.