Sorry for the delay in the posting – things have been BUSY, but GOOD!
Last week 5/21, Brax didn’t end up making counts. She wasn’t ready and wanted another week off, so she was somewhat relieved when numbers came back low. Her ANC was coming up nicely, but only at 400.
This week, 5/28, her numbers were great and she was able to start Interim Maintenance I. Her ANC had jumped up to 1100!!! That is the highest it’s been in 6+ months.
Dr. Hilger’s did her LP that morning (she now has an LP to start every phase). Also, we got some sad news that Dr. Hilger’s will be taking an Attending position at Children’s Hospital downtown. She assured us that she will keep an eye on Brax, but also said with how well she’s doing and where she is now in the the process they probably won’t even assign another Fellow to her and just let Dr. Sadak and Melissa run with things. Still sad to see one of your doctors leave though.
After the LP, we were admitted and headed up to Floor 5. With this particular phase, Brax will be inpatient for 3-4 days and then go home for the remainder of the 2-week period. We have been told that even though she is inpatient she will feel pretty good while in the hospital and then “most” kids feel REALLY good when they are out for those +/- 10 days. And if you are wondering why she needs to be inpatient (as we were when this all started), she has a 24HR chemo infusion of Methotrexate and then fluids and recovery drugs immediately afterwards until the level of Methotrexate in her blood is under 0.1.
Brax was in very good spirits this time around and ready to start the phase. Also, it’s much easier when you can mentally prepare for having to go to the hospital, rather than the unexpected trips that land you there for a week. This stay was much more relaxed.
They got her chemo started Tuesday afternoon around 5:30PM. They rolled her IV stand in and it was quite the frankenstein looking thing (2 poles, 3 IV pumps and 2 syringe pumps….wowser!) Turns out that was a mistake and they disassembled and reassembled to get what they needed, but it was pretty eye-opening at first.
She had a good night Tuesday and a long day Wednesday with chemo nearly all day. She finished up around 5:30PM on Wednesday and now the push was on to get liquids in and the drugs out as soon as possible. Again, once you get under 0.1 they send you packing and it was Brax’s goal to get there as soon as possible.
She did a great job and kept mom busy with bathroom breaks for the next 36 hours. Every blood draw her levels were coming down and quite fast. She actually hit 0.1 on Friday AM, but they wanted it to be BELOW 0.1 and said they would draw again Friday afternoon. The afternoon draw came back at 0.04!! She was bustin’ out after 3 days!!
We also got the results back from the spinal fluid from the LP on Tuesday and everything looked fantastic! It’s always a relief to know things are working.
We got home Friday night and hung out for a bit with G’ma & G’pa Paulson who had been helping with Brylee this week and then off to bed. Was nice to be home!
Saturday was a great day!! It was probably one of the best she has had since being diagnosed. She felt really good (which they said most kids do), she worked out (even got ambitious and did some ropes – see video below) , ate great, and her overall attitude was an A+!
Again, as we have said before and will continue to say, THANK YOU to everyone for everything – parents, friends, coaches, teachers – you name it! It would be nearly impossible going through this without help and we can’t thank everyone enough.
Please continue to keep Brax in your prayers! She’s gonna keep killing it!
WE GOT THIS!