Hi everyone!
Well, as usual for us lately, it was a busy day at the oncology clinic. Let's start at what happened yesterday... The BMT coordinator called yesterday and said that they weren't aware that Alex was going in for another lumbar puncture and had decided since she was going to be there, that they could do their portion of the bone marrow biopsies while Alex was already under anesthesia. Wow... finally someone is talking to each other. SO... this will free up December 6th for Alex and one less operating room visit. It did mean a longer day today for us. For a couple of reasons. One of the reasons for the bone marrow biopsies has to do with this clinical study they want us to participate in. In order to move that up to today's visit, they needed us to talk with the people associated with the study. In the end, we are still not sure what we are going to do. I am going to call our case manager tomorrow and see just how horrible our pharmacy benefits are going to be. We have great insurance when it comes to the medical side of things... it's really not good on the pharmacy side. Remember the fungal pill... I am hoping to find out more about medications tomorrow. Alex WILL come home from the Bone Marrow transplant on at least 15 medications! No lie! So, as it sits, we are still on hold with the decision about the study. They did take the extra bone marrow sample and have a hold on it at the lab until we make our final decision. It's not an easy one. Of course! The drug that they are wanting to give half the patients on the clinic trial has been shown to have some benefits with GVHD (graft vs host disease) and also with relapse. BUT... and a big butt... it comes with some potential serious side effects (of course!). There are just pros and cons with everything. You just have to decide what makes you feel better about all the poison. In the end, Alex will have to decide what she wants to do. To a certain extent. The cost of such trial medications will come in to play and if they are exorbitant... well, we may have to go with standardized treatment. Which she has a 50% chance of getting randomized to anyway. Make sense? Uggg! I hate decisions of this nature. And we seem to have to make them all the time! Anywho... moving on...
Alex was seen in clinic today for her standard check up. The BMT people also decided that because she needed to get her regular CBC blood draws that they would do their BMT labs along with all of it today. This will save us a good hour tomorrow when we go in again. SO... in the end, they ended up taking about 20 vials of blood from Alex today. Her regular blood counts came in pretty good today. White count 4.3, Hematocrit (red) 30, ANC 3.5 (excellent) and platelets at 46 (low but OK).
After the BMT labs and doctor exam they sent us down to the RTU for her bone marrow biopsy and for her lumbar puncture. They administered that HUGE slow acting ARC chemo again. This is supposed to be very good for attacking any bad cells in her brain and spinal fluid... and is supposed to last for the next 2 weeks. I did not get the results back from the sample they took today. We are really hoping there were no blasts present. I will update on that when I know. The procedure went as planned and she was in recovery within about 30 minutes. For some reason today, this procedure really took it out of Alex. She didn't want to wake up. Nothing alarming, but was just enjoying her drug induced nap. She was freezing... and just plain miserable. I am heartbroken that we have to get her up and do a bunch more testing tomorrow. But... it must be done. At least tomorrow will be quicker and NO chemo! Tomorrow she gets all of her preliminary lab work... Ecko, EKG, pulmonary function test. It should be a fairly easy day. (I hope!)
I will update tomorrow with any other information.
Alex's BMT blood labs
Dan with the therapy dog... they have about a half dozen therapy dogs that come into the chemo clinic. They are so adorable and of course the kids love them.
This is the 'hat tree' in the chemo clinic. All the kids can take as many hats as they want basically. There are so many that are donated.
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