Well, it's been a shitty day up at the Children's hospital. Nothing too dramatic, but shitty none-the-less.
First... (and this I love) we are supposed to be here at 11:00am. We arrive at 11:00 and we are told that there is an entire pod of rooms but they aren't available yet because they have waxed the floors and we are to go to the clinic. Here we are with suitcases, computer cases, bags and now we get to hang out in the clinic... WITH all the children. Yay! SO... first of all we stand at the check-in counter for 37 minutes!!! With all our crap! And I ask the check-in person if things aren't ready if we can leave, go have lunch and come back?? Seems reasonable. Ummm, no. Finally after about an hour we are told that she needs to go back into the infusion room and they will start her bolus of liquids (a ton of liquid administered over 30 minutes). They want to do many different urine tests to make sure everything is working properly and also to have a comparison for tests that will come after this round of chemo.
Well, first let's talk about the shitty news. While Alex was getting her bolus of fluids her doctor stopped by to talk to us about the lumbar puncture results from Wednesday. After examining all the cells collected, they found that 37% of the cells were Leukemia blasts. This is not good news, as we thought the leukemia was in remission. The doctor said it was concerning and he agrees that a BMT sounds more likely the course of action. So, the plan of attack for these new cancer cells is; a second lumbar puncture will happen on Wednesday where they will administer a long acting chemotherapy called ARC. This is the same chemo that she received while in the hospital in those super high doses. They are hoping that this will kill those remaining cells. We need some serious cell-ass kicking vibes sent our way. Alex took all of this news really well.
So, now the routine info...
We finally got into a room at 1:30. Neat eh? We got Alex settled in and were handed the paperwork on all the chemicals that Alex will receive this week. She will be getting Etoposide and Cyclophosphamide every day for 5 days in a row. Both of these will be closely monitored by the chemo team. They both come with some different side effects than some of the other chemos. Cyclophos can cause heart damage and bladder damage. This is why they are always pumping her full of liquids. She has to go to the bathroom every two hours for the 5 nights she is here... even through the night. They will use as much liquid as necessary to achieve this. This medicine can also effect the liver. There is a special medication that they give with this chemotherapy called a "rescue medication". It's called Mesna. It helps with the bladder issues. The second chemotherapy is called Etoposide and causes some strange things also. The big thing they look for is lowered blood pressure. So, as this is administered, they will check her blood pressure often. There are also problems with shortness of breath. Both of the drugs this week have a side effect of "hair loss" which is kind of funny as Alex is totally bald now. She's not too worried about this side effect. So, all these drugs in addition to the lumbar puncture (which was NOT on the brochure!) will be given this week. Let's hope they kill all those remaining lurkers out there.
SO.... that's what we got going for us this week.
Once again I need to thank so many special people! You know who you are! Thank you for all the nice things you send... do for us... I am so grateful to so many!
I will update tomorrow with any additional details.
Let the fun begin.....
Wow, that was a ton of information. You know... I think you, Alex and Dan could be oncologists after all this. I will be thinking of you all, especially Alex. Be strong girl. Love you.
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