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.