Hi everyone!
First let me start off by thanking everyone that showed up to donate at the blood drive. THANK YOU!!! What an incredible turn out. We had 50 people show up and 35 of them were able to donate. Very cool! I am hoping to put together another blood drive in February. This one will be in Salt Lake City, and we're hoping that we can get a date that will enable anyone that donated this time to donate again.
There isn't too much more to report on since I last updated the blog. Alex finished radiation yesterday evening. It was a frustrating day at the Huntsman Center. Their equipment kept breaking down and Alex had to patiently wait each time for them to get the machine up and running. BUT... she is now done with radiation forever I think. I think she has had a lifetime maximum of radiation. SO... here's hoping we never need it again!
Ok... funny story... Alex wanted a cup of coffee yesterday. She can only have prepackaged, instant coffee because of sanitary concerns. So... she calls the nurse's assistant (they are called techs) and asks her for cup of hot water so she can make her coffee. The tech comes back with the cup of hot water and says "Well, I know it's hot enough because I put my finger in it." Alex's dad followed her out the door and said "Did you just say you put your finger in my daughter's water?" And the tech says "OH YEAH, I'm not supposed to do that with a bone marrow patient!" WTF??? I am hoping she doesn't put her finger in anyone's water! It has been the source of many jokes around here now...
Alex is now hooked up to the Thiotepa. This will infuse over 4 hours. It's a TINY bag to be infusing for this long of time. This is the stuff where she has to shower 3 times a day... change clothes 3 times a day... and change her bedding 3 times a day. AND the water problem still isn't fixed, so we have to go to the tub room to deal with all this. FUN! They are supposed to be installing filters on all the rooms tomorrow. We are in line to be the first room. (I hope!)
There are definitely a few differences up here when you are a BMT patient. One of the first things I noticed is when they take Alex's temperature every few hours they use a standard digital thermometer under her armpit. This is axillary temperature. This is the most noninvasive way to take a temperature and said to be best at determining low grade fevers. I thought that was interesting. Another thing that is interesting is the mouth care regimen. She has to do a series of things 4 times a day. She has to brush... then she has this prescribed rinse that she has to swish and spit... and then she has another product, Nystatin, that she has to swish and swallow. This medicine is used to treat fungi and yeast. Her mouth is a big risk for infection since the mucus cells are one of the most affected cells with chemo. This is why mouth sores are so common. I am glad they are so diligent about mouth care.
Well... that is about it today. Alex is definitely not as perky as the last few days. But that was expected. I just hope she can get through all this with as little sickness as possible. Her surgery site is still very uncomfortable. Hopefully that gets better soon.
I can't believe we are only 5 days to transplant. I'm definitely getting a LOT stressed out. Please send MANY anti-rejection vibes!
Thanks for being here everyone! It's so great to see how many people are reading about Alex's journey! I will update more in a day or two.
Alex playing around at the Huntsman Center.
Here is a picture of the lead plates that rest on Alex's chest. She likens their shape to a couple of steaks :)
Alex's first bag of chemo today... It has a brown shield over it because it's light sensitive. This is the one that secretes out of her skin.
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