It’s been another whirlwind week for Team Brax!
Last Saturday (one week ago today) we were all supposed to be in Florida for Em and Bryton’s wedding – CONGRATS you two!!.
Brax was not feeling like traveling, so we made it a quick trip (2 nights for Mom and Bry and Dad flew down on Saturday morning for the wedding only). Well, it turns out Brax made the right decision as we instructed G’ma & G’pa Battaglia, who were watching her for the night, to temp her before bed as this is our usual procedure, never expecting any issues as we haven’t for months now. But not the case this night. We got a call around 9PM from G’ma Laurie saying Brax was running a little fever. With oncology patients anything over 100.4 is considered a fever and Brax was temping at 101.0 and a few minutes later 101.5. So, knowing the protocol we had them pack up and head for the U of M ED (emergency department)….lucky G’ma & G’pa.
They got to the ED around 10PM and with everything in the ED, things move very slowly. Being that Brax had a fever and counts were low it guaranteed her a minimum 48-hour stay. Her and G’ma spent most of the night and early morning in the ED waiting for a room to open up on Floor 5. Thankfully they rolled a bed into the room for G’ma as the ED rooms are not very comfy.
We all flew home on Sunday and went straight to the hospital. Brax was doing well, and no reason for her not be, as had she not temped herself the night before she wouldn’t have known anything was wrong. We were all relieved though to see her doing well and having her blood cultures come back negative for any infections. Now, like the times past we hang out and wait for numbers to come up so we can take off.
In this case, we had just finished Consolidation, so Brax’s bone marrow is pretty beat down and because of this numbers are not moving very fast. We were told this is very normal, which we were happy to hear. We were also told by one of nurses that 90% of kids have an inpatient stay during Consolidation, which was also very encouraging to hear, as Brax did great throughout those two months of Consolidation, but it finally caught up to her.
We spent Sunday, Monday and Tuesday in the hospital and were hoping we’d be able to get out, but no such luck. We needed her ANC to be at 500 and we were still at 0. Maybe the Ice Cream party in the lobby will help…a pint a day keeps the Dr. away…right?!?!
Wednesday her ANC finally moved to 100 and her AMC (Absolute Monocyte Count) which we don’t really talk about much was climbing, so the Team made a deal with Brax that once her combined ANC and AMC reached 500 they would send us packing. So another day hanging out. Wednesday was beautiful and Brax went out to explore the playground and shoot some hoops.
Thursday her AMC reached 600, but ANC dropped back to 0. However, since they told us the day before that once we had a combined ANC/AMC of 500 we could leave. Well, it turns out that we need SOME reading for the ANC (the fine print that we were not aware of). Another day of hanging out on Floor 5. We got a beautiful sunset that night!
Friday was more waiting and Brax was starting to get restless. She was excited to go the Seeds to Supper Event that was going on that day, so that helped keep her upbeat and engaged. G’ma Laurie also came in that morning to do that with her, which was nice for both of them.
Now today, one week later, we finally got the OK to leave, but it took some experimenting and some number manipulation. Her early AM blood came back at ANC 0 and AMC 700. However, the Attending said let’s try something and see if we can get a better reading. He wanted her to ride her bike “fast” for 1 mile in the hallway and then do a blood draw immediately afterwards. He said physical activity can help release ANC to the blood. BINGO!
Brax did her mile and the before and after results are below. Her ANC moved from 0 to 100 and AMC jumped from 700 to 1100, so a combined ANC/AMC of 1200 with a postive ANC = DISCHARGE!!!
They actually let Brax run her own blood up to the lab and see what that looked like. She said that was the best part of the week….haha!!
Everyone is now home and we will see what next week brings.
We know for sure we will have her Neuropysch testing on Monday. It’s a long 6 hour test to get a baseline. She’s not thrilled about it and don’t blame her.
Tuesday, we will go back to see how counts look and see if we will be ready to start the next round. Based on how she’s trending we may have one more week off, but you never know. Either way we are all taking it in stride as we have a long way to go, but everyday is one day closer.
WE GOT THIS!!