Month: May 2019

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!!

Brax just finished Consolidation yesterday!!! Another phase to check off the list.

It’s been a bit since the last post, so i’ll do my best to update you on everything this past week+

Last Tuesday, Brax had her 3rd treatment of this 2nd half of Consolidation and it went well. She also needed both a blood and platelet transfusion since numbers were down. This treatment consists of two drugs, PEG & Vincristine, and has been the toughest on her every time thus far. She is usually pretty cooked for a couple days after this one and it proved to be the case again. We think this is probably the best she has felt after this specific treatment, but still pretty wiped out. The plus side, it has given her some time to catch up on some reading….looks enjoyable…yuck!!

They had us come back on Thursday to check her counts and see if another transfusion was needed and she checked out fine. Her platelets were low, but not to the point of needing a transfusion.

Friday, Saturday, and Sunday were pretty uneventful and that is the way we like it these days. The Team always says, “Boring is Good!”

This past Monday, Brax tried to go to PT, but wasn’t feeling great when she got there. Before they even started she got a dizzy and light headed, very similar to how she felt a couple Saturday’s ago. We called the clinic and took her in for blood work and she ended up getting both blood and platelets. Her hemoglobin was actually still slightly above where they wouldn’t require a transfusion, but since we were there we did both to give her a little boost knowing she would have her last round of treatment Tuesday.

Yesterday we went in for our regularly scheduled treatment and our last one of this cycle and phase!! Consolidation in the books!! Her counts are low, but good, and everything is moving in the direction we had hoped for.

We had planned to go to Florida this weekend to celebrate Auntie Em’s wedding, but Brax is going to stay back. She feels good, but just isn’t ready to jump on a plane and she made that call. She knows her body better than anyone right now and she just didn’t want to be stuck having to do any doctoring at an unfamiliar hospital (if needed).

We will go back in next Tuesday, May 14 to see if she can jump into the next phase of treatment which will be Interim Maintenance I. Again, when starting any new phase they need count recovery and we are fairly certain that Brax is going to have a week or two off based on how she trends, but you never know – she’s been known to surprise us.

This next phase will be a bit different too. There are only 4 treatments over the course of 2 months. Each cycle being 2 weeks and will include both inpatient and outpatient days. To start each cycle, Brax will be admitted for 3-4 days for 24HR high dose methotrexate and be given a recovery drug and fluids for the following days until she has cleared the drugs. Once cleared she will go home for the remainder of the 2 weeks and then start again once counts recover. We have been told that most kids will feel pretty good for these 2 months, both when in the hospital and out (been told really good when out). So we are hopeful she will tolerate this very well and we can get out and do a few things while she’s feeling good and counts are a bit higher.

Below is a quick overview of her roadmap. Delayed Intensification will be after Interim Maintenance I and that will be another intensive phase, but then things should get a bit easier in terms of treatment intensity.

Thanks again to everyone for the continued support. Everyone has been so generous in every aspect of this and we are very blessed.

Also, this past weekend was First Communion, which Brax received last year, but Fr. Paul asked if he could talk about Brax in his homily for this year’s First Communicants. Check it out on the Fun Stuff page!

We will update after our appointment next Tuesday with counts.