Tony is a bottom-dweller! (Day +5)

Just kidding. But his numbers are getting down there and in particular, his neutrophils are so low the lab cannot even count them! What does this mean?? Its good. It means we are progressing according to plan. It means, now the stem cells have a chance to take root.

There are many goals in this process. Many of them are obvious. This one may not be as we are getting a lot of questions about it. The doctors need Tony's numbers to be bottom-dwellers because the stem cells, that are 5 days old in Tony, need an empty space to take root in. The transplant nurse explained it like this: Imagine the cancer Tony has as weeds in a beautiful garden. The weeds were choking out the good growth – flowers and veggies. The chemo is the weed killer. Unfortunately, it does not just kill the weeds, it kills the flowers and the veggies too. The stem cells are the seeds for a new, fertile, healthy garden. Right now, at day +5, we are waiting to let those “seeds” germinate and begin to sprout. This is gonna take about 5-8 days, maybe more.

So, Tony is a bottom-dweller, but he needs to be and, SOON, he will be a brand new garden. :)

BTW- he is good. I am just writing the blog because I am excited to try to explain it to you all!

Day +4

Hello all, just wanted to let you all know that I am doing well and have been feeling pretty good the last few days. We have not posted anything on the Blog as there really has not been much happening. At this point everything is a waiting game. For now we are waiting for my immune system to be completely removed. The indicator for that will be when my white blood cells get to zero (currently we are at 0.5), which should be tomorrow. After that we wait for the new t-cells to “engraft” and start producing their own white cells (and stuff). This is not an exact science and we can not be sure when this engraftment will begin, nor what might happen when it does. There is a whole myriad of issues that can come up once the process begins but I am not going to speculate (even think about ) that for now. What we have to do now is NOT GET SICK. As you can imagine with no immune system I am susceptible to the smallest/simplest infection and the worse part is that I have nothing to fight it off with if I did get something. So we are doing our very best to keep everything as neat and clean as possible and just slowly work through the next days. This process could take less that 2 weeks or more than a month, we just don’t know. For now I need to keep working on my energy, without new cells growing I have nothing to burn/use.  

Day +1

Earthquake Tony is past for now.  The last fever was over 24 hours ago.  The fevers really took a bite out of his energy reserves.  There has been more nausea, but sleep is helping with that.  This evening, Tony is more energetic, lively and interested today.  He has been helping me get a computer program for sharing files between our phones and the laptop and he's helping me with this Blog. This is good!  For those of you sending emails, texts and calling, Tony is really only awake for 2-3 hours a day, right now.  So, I am reading him your messages but he is not replying to them right now.

Dominic and Jackie (our nephew and niece) are Rock Stars around here.  Apparently, the nurses have never had anyone make a paper chain to count down the fist 100 days after transplant and the nurses are WOWed!  In case you don't know what a paper chain is, you use it as a count down!  You take off one link each day to count down to your goal.  Dominic and Jackie decorated 100 links, connected them and mailed them to Uncle Tony.  (OK, Angela helped with a lot of it.)  Tony and I hung it in his hospital room, so he can look at it and every day we will take off a link and put it up in the room.  I took a picture for everyone to see.

Day Zero - Got the Cells

Picture 1 - Got the Cells - Thumbs Up!              Picture 2 - Every Last Drop!

Day 0

Greetings and salutations loved ones! (Karen here again)

Well, it is Day 0! The Transplant went off without a hitch. (I am not a fluids and ooze kind of person, but for those of you that are, boy was it a cool day. The Stem Cells looked an awful lot like dark colored Campbell's Tomato Soup). (Ugh!!) The transfusion took about an hour. We had a chaplain come in a few minutes before and say a few prayers and a few blessings. She was no Father Carl, but it was nice and simple.

I wrote yesterday that Tony has been having some fevers. They come and go as the Tylenol works its magic and then fades away. Its hard because he has tremors and they really hit him hard. They take a lot of energy! But the nurses are great and have the ability to give him many different meds to try to alleviate all the discomfort.

Everything else is looking good. We are hoping the fevers will fade completely in the next 24 hours. Tony and I will keep you posted! When he is feeling more energetic, then he'll help me post the pics of the transplant.  

Day -2 & -1

Day -2 & -1:

This is Karen checking in today. Tony has not had the greatest of experiences these last couple of days. His 2^nd kind of chemo was hard on his sinuses. Sunday evening he started to have bad pressure in his head and it escalated to a 7 out of 10 on the pain scale. Monday saw him with less pain but unable to rest and some nausea. Monday night was restful but Tony started his anti-rejection drugs Tuesday and it has not been pretty. He is getting a drug called Prograf, and in the interest of making everyone feel like they are here – There is a sign as you enter his room telling the nurses “PROGRAF CAN ONLY BE ADMINISTERED THROUGH THE WHITE PORT – IF ADMINISTERED THROUGH ANY OTHER COLOR, THE PORT IS CONTAMINATED FOREVER!” I especially like the emphasis on forever! Basically, this is a drug that needs care. Tony is also getting another drug called ATG and apparently this is the cause of his terrible day!

He is suffering from chills, fever, muscle spasms, pain, nausea... (Right now he has a fever of 102.8 and he has 5 ice packs positioned in various places on his body.) These are all expected side effects, but the fever is worrying.

Tomorrow is DAY 0! As things stand now, nothing going on today will stop the transplant. As I said above, while stinky for Tony, these are all expected side-effects, so GAME ON! We'll post again tomorrow!

Day -5 - 4 and Day -3

Just a update for today. I have competed all 16 doses of the Busulfan and have begun the second regimen of chemo- Cyclophosphamide. This one is a bit more of a doozy and should knock off the remainder of my immune system. Yeah! That is not even the fun part, the fun has to do with over 1040 ml of chemo and fluids that are going through me every hour. I should just set up shop in the bathroom for the next 2 nights. I can't go more that a ½ hour without a pee break. Other than that, I am handling things OK, I get a bit more tired everyday and it takes longer to recover but as I have been saying, if that is the worst of the pre-transplant stuff then I am lucky. Next step-- the transplant!!! (but that's still 3 days away).