Feeling a Bit Better

Tony is beginning to feel a little bit better. He was able to play cards with me yesterday, and he kicked my butt. It's pretty bad when I can't win to someone who has "chemo brain." Haha. He was able to do 15 laps around his hospital floor. This is a big step up because he hasn't been feeling well enough to even watch a movie or write in his journal. So he is extremely grateful to be feeling a bit better. However, the sores in his mouth and throat are multiplying and make it painful for him to talk or eat. I think he really misses food, even though most food doesn't sound good to him right now.

He has really been missing Jack so we got special permission today to take him in. We have to bring him to the lobby on his floor and Tony can come out of his room with a mask on and see him. He still can't touch him, but at least he can see him.

I heard a quote in church yesterday: "It means much to give of your money, it means more to give of your time, but it means most to give of yourself." It made me think of Tony's donor. He took that quote literally. He gave of himself big time! He gave Tony so much! We are so grateful to him.

Baltimore Aquarium

And yes, my mom is here. Here is proof. She has been doing a fabulous job at taking care of Jacko as I run around everywhere. He sure loves his grandma. We had to run some errands in Baltimore so we decided to go to the Aquarium while we were there. We were able to see 2 dolphin shows and then all of the other cool exhibits that they have there. Jacko was a champ. He only complained a little about being stuck in a backpack for a couple hours. He is such a good sport. 

Borg Tony

So Tony has had a really rough few days since the transplant. He got a pretty high fever and got some pretty violent chills. Then the chemo and radiation did their dirty work and pretty much destroyed his GI tract. He had consistent diarrhea and his stomach hurt really really bad. It was stopping him from sleeping. They finally gave him a pain button that administers morphine whenever he is in too much pain. That helped him to be able to sleep. He got really weak and just felt really crappy all of the time. They tried several different things to stop the diarrhea, but nothing worked so he got super dehydrated. Poor guy. It has been a real challenge for him to do pretty much anything, but he has been a macho man and usually tries to sit in his chair instead of laying in bed. He tries to only lay in bed when he is sleeping/resting. So after 3 days of feeling so terrible, he just started to feel a little better today. He still has a low grade fever, but his stomach doesn't hurt near as bad, and his diarrhea has let up. However, the chemo and radiation have continued to destroy his GI tract and he has now developed sores in his mouth and throat. He looks like he just got his wisdom teeth out. His cheeks are swollen and it is really hard for him to talk. It has made it almost impossible for him to eat, so they have given him a nutrition bag. All he had to eat by hand was a small cup of applesauce and a small cup of ice cream. He still feels pretty sick all the time, but he is just a little bit less miserable. Lets just say, we are all very excited for this to be over, but there is still a long road ahead. It's no fun to be sooo sick for soooooooo long.

So Tony wanted me to come and take pictures today of all of the stuff he is hooked up to. He has soooo many wires going into him. It is totally crazy. The bottom one is of his new port that goes into his arm. So now he has his chest port and his arm port. Both of them have so many IVs constantly pumping into them. So these pictures are just to give you an idea. 

Are you curious what it is that is actually going into him? Well here is a list of just the liquids they pumped into him today:

Aciclovir (Anti-viral)
Fluconazole (Anti-fungal)
2 different bags of Electrolytes
2 bags of Potassium
Meropenem (Antibiotic)
Vancomycin (Antibiotic)
Morphine (He has a pain button so he pushes it when he is in a lot of pain and it gives him a small dose)
Saline solution (He got really dehydrated 2 days ago so they need to give him the extra fluid)
Benadryl (For allergic reactions)
Ativan (Anti-nausea)
Opium (Anti-diarreah) (I know weird, right. That is what finally worked to stop his diarrhea)
Lasix (To get rid of all the fluid he is retaining)
Nutrition (That big white bag is all "food." He isn't able to eat much on his own)
Platelets (He got down to 15,000 with is crazy low. He got a pretty terrible nose bleed today and whenever he gets a shot it just bleeds. I walked in today to visit him and his gown had blood all over it. It scared me. But he should be much better now that he has more platelets. The other good news is they used o+ platelets and he didn't have an allergic reaction! Hooray!

Up to No Good

Jack has discovered how to take things with him while he moves. He just sticks it in his mouth. 

And crawls and crawls and crawls. I pretty much never get to hold him anymore. He would much rather crawl around. 

I have "designated messes" for Jack all over the house. Safe things in each room for him to make a mess of. I put all of my lightest things here on the bottom shelf. He always pulls the bowls apart and likes to whack them with the plastic spoon we use for our rice cooker. Such a funny little guy. 

Fun with Jack

Jack's new favorite game is tipping over my block tower. If he sees the tower he will stop whatever he is doing and crawl over to knock it down. He is so funny. 

I let Jack feed himself tonight and it was a little messy. Notice the yogurt spattered on the mirror. But he was so excited about it. He was just giggling the whole time because he FINALLY got to hold the spoon. He loves doing "grown up" stuff. 

Transplant Complete!

Tony's transplant began at 10:30 this morning. The lab got the stem cells last night and removed the plasma and most of the red blood cells. (They are unneeded) They tested the cells this morning and found that they had 98% viability. She said that's the highest they've seen in an unrelated donor, so we were pretty excited. They were especially amazed by that because it had been 48 hours since they had extracted them from the donor. (The donor was poked 50 to 100 times in the back (hip bones) to extract the amount of bone marrow that was needed). 

The original amount they started with (the bone marrow) was over 1300 ccs. After they removed most everything else (besides the stem cells) it ended up being 812 ccs, which filled exactly 14 of these syringes. There are 3.07 million stem cells in total that Tony received today. We were told that the engraftment will happen faster with more cells, so we are glad our donor was able to give so much!

This is what the blood came in. All 14 syringes were in this cooler. It is better to keep them cool.

This wonderful lady is Donna. This is who has been doing soooo much for us. She was responsible for finding our donor, getting us a grant to pay for the process of finding a donor, and a million other things. She was the one that did the procedure today. We listened to Mannheim Steamroller Christmas while she pumped each syringe into his port. After each syringe she had to flush the line with saline solution because the stem cells are thicker so they can cause the line to clog if its not flushed. 

Half way there! They were consistently monitoring his life signs all the way through. He stayed really steady and did really well. 

Tony took an ice cream break in the middle. 

We started syringe #9 at exactly 12:12 on 12/12/12. 

Last one!

Mission complete. 1:00 exactly. Tony felt a little nauseous after he was all done, so he is going to rest. We will not know if the engraftment worked for 14-25 days. It will be at that point that we also find out whether or not he has graft vs. host disease. That is where the new stem cells (which make up his new immune system) decide whether or not to protect or attack his body. They can identify his body as foreign and attack it. If that happens, they will suppress the new immune system even more until it gets used to its new home. He has 3 or 4 more doses of a milder chemo that will be given every few days to suppress the new cells. We are hoping that his counts begin coming back up around Christmas. 

Transplant Date

The transplant has been delayed one day. The flight the bone marrow is coming over on has been delayed. But this won't be a problem. I repeat...this does not effect the transplant negatively. It just means it will happen one day later. Actually Tony is a little bit excited because now his "new birthday," as he calls it, will be 12/12/12. He thinks that is pretty cool. So everything is set to happen Wednesday afternoon. I think it is also kind of good because it will give him one more day without radiation or chemo before they have to put more stuff in him. Maybe his body will have a little time to recover and reorient itself.