tom's blog

Here, there, everywhere

I've spent the last few days trying to figure out how to be in three places at once (home, hospital and work). I can't quite figure out how to do it, so I'll have to continue with running from place to place and try to sneak in some sleep along the way. If anyone has figured this out, please let me in on the secret.
Things have continued along, sticking pretty much to their original timescale. There have been no major setbacks and she's pretty much on the "best case scenario track", but that best case scenario ain't exactly easy. All in all, she's doing pretty well, but it's been a rough few days. Medically, she definitely hit her low, with her white blood cell counts dropping down to 0.1. I think, healthy adults range in the 4.5-10 range, so regardless if you understand the science behind it all, it's clearly far from normal. She's also had an occasional fever for the last few days, which they are continuing to watch and treat with some medicines. She's also been feeling a little extra achy with higher than normal pain. The pain med helps, but certainly doesn't take it all away. Additionally, the mouth sores have worsened a bit and extend down into her throat, which makes it very difficult to eat. She's been managing to have an Ensure, and a little bit of food but definitely not full meals at this point.
As mentioned previously, folks can sign up to donate blood or platelets directly to Anna. My father wound up having a matching blood type, so they actually used his blood this past weekend when she needed a transfusion. I know there's blood in the blood bank, but this really feels nice knowing that it came from a family member.
But, all of this is really expected and just part of the process. Her white blood cell counts are starting to bounce back a little bit, and if this continues for a few days and the temperature clears, then she should be feeling much better by Wed/Thu. They've even started the discussion about going home at some point, and we'll just have to see how the progress goes.
Tough days, but it feels like we're getting closer to bouncing back. Hopefully, we'll see some nice improvement over the course of this week.

Day +5 (low point)

We're up to day +5 already (five days after transplant). She's doing about as well as we can hope for, but definitely is going through a rough period. They had said that Tue/Wed/Thu would probably be her low, and definitely seems to be that way thus far. Her blood counts are dropping, the mouth sores have arrived, and her entire body is pretty achy. All of this is expected, but it certainly doesn't make it easier. Some of the basics like eating/talking are pretty tough right now. Hopefully, in another day or two, she'll start the rebuilding process. She's had a few visitors over the last few days, so thanks everyone who stopped by. They are a bit restrictive with visitors, but if you are interested, so if you are interested, please reach out to me or Anna. Also, please don't forget to check out the info on blood donations.


Things are good at home. Through some family connections, we have someone a new person - Norma - staying with us. TJ's really taken to her, and she's doing a great job. Also, Anna's mom has been around to help with the transition and my parents were in town for a couple of days, so it's always good to have extra help. TJ's been struggling a bit with wanting Mommy to come home. Its mostly as night, as I'm trying to get him to go to sleep. The skype video stuff has been great, but it still isn't quite the same.


Our friend Ursula reminded me this past week of Jimmy V's speech at the ESPYs year ago... don't give up, don't ever give up! One of my favorites. (you can skip ahead to the the 5 minute mark if you dont want to sit through the sports story)


Transplant Day (Day 0)

Today's the big day. She finished her 9th and final round of radiation earlier this morning, had some food and is now getting prepped. She's had a few extra visits from the nursing staff prep her for the transplant, which includes a few extra prep-meds, a review of some of the things she'll need to help reduce the chances of infection, and a prep of the main line that will be used for the actual transplant. They were aiming to being around 12:30pm, but it feels like we're running a little late. The stem cells haven't arrived to this unit yet, so we're in a bit of a holding pattern. Everything happens right in her room, so I'm able to be there the whole time. They hook her up to all the vital sign monitoring machines (ie. heart rate, blood pressure, etc) for the entire process and have one of those crash carts on stand by right outside of the room, just in case.
12:25pm update: Nurse just popped her head in to say the cells have arrived on the floor. Nurses now doing prep stuff outside the room. Bag is apparently "fresh", not frozen... which is good as the frozen stuff has an additional chemical to preserve it.
12:30pm update: Bag and the nursing staff have arrived. Looks like a tiny bag of blood. Amazing that something so simple can save a life. Doctor staff is reviewing the numbers to ensure everything is right, and they are in process of hanging the bag of stem cells.
12:32pm update: Process starts. Amazing. I had this fear that this donor was going to get run over by a bus or the cells would be involved in a plane crash or something. So happy that it's actually here. Doctor made a point of saying she was "very happy with the product". I didn't completely understand the medical explanation why... had something to do with it being fresh and the quantity. As long as the doctor's Happy, I'm happy. That's good enough for me today.
12:47pm update: Everything is cruising along. We expect this process to go for about an hour. The nurse today is fantastic. The nurses over here in general are good at what they do, but the one today is great. She's really making Anna feel comfortable.
1:30pm update: I'm guessing we're a little more than half way through. Anna's taking a nap. Some of the pre-meds can make you pretty sleepy. All in all, pretty anticlimactic thus far... but boring is good when you are going through something like this.
1:50pm update: Transplant process is done! Woo hoo! Everything looks good. She's pretty sleepy, but is going to try to eat a little lunch. I just posted some new info on donating blood to help Anna's recovery. Please check it out!
6:45pm update: She's doing great. She was up and moving and went for a walk earlier. Exercise and eating are really the two best things for her at this point, so we try to encourage both of them. She's been a little feisty this afternoon... kinda like her old personality... that had subsided a bit when she was feeling beat up... didn't expect it back so soon... oh well, i guess it's still a positive sign :)
She'll have a tough week ahead of her. The chemo and radiation from last week have a cumulative effect, and tend to take a few days before they really set in. She'll probably have a low around Wednesday of the coming week, and then we really start rebuilding. At this point, they are starting to build her back up, so she'll be on the upswing soon.
Thanks everyone for your support!