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.