Month: September 2019

It’s been a busy but good week for TeamBrax. We officially ended Delayed Intensification yesterday and we officially launched Brax’s fund – TB1Fund. All very exciting!

Brax is feeling really good, but we are still in the hospital until counts recover. We don’t have any real timeline, which is frustrating, but at the same time the she’s in the best spot she can be with her immune system being compromised and as much as we’d like to head home, keeping her healthy is most important. Below is a snapshot of her current Treatment Roadmap….we are getting there! It’s been a long 8 months, but overall no major setbacks and everything continues to move in the right direction.

Also, we just recently launched TB1Fund. We have been talking about it for awhile now and it’s finally here and launched! In partnership with the U of M Foundation, TB1Fund will allow Brax to help other patients and families at the University of Minnesota Masonic Children’s Hospital. We are very excited about it and so are many others. We have had a great response so far and we hope everyone will help contribute if able. Thanks to everyone who has already supported and to all the amazing sponsors for getting this project off to to a great start. See the link below for more details and/or to donate.

www.TB1Fund.org

Now back to blog-biz! The last week+ has been BUSY.

Friday the 13th Brax was asked to come be part of Dr. Moertel’s award presentation. Hyundai awarded the U of M $300K for continued research – very AWESOME! Brax sat through the presentation and then got to leave her print on the car.

Saturday Bry came to the hospital to visit and the girls watched some Gopher’s Football and hung out.

Last Wednesday was a really big day. The Women’s Gymnastic team came in a couple of waves to check on Brax and see how things are going. It was our first time meeting Coach Hansen. She has been great about keeping in touch and checking on Brax.

Then not too long after, Coach Fleck, Heather and the football team came in to say hi. Coach Fleck & Heather have been great to Brax. Coach and Brax have a special little connection and it’s pretty cool.

The rest of the week and weekend were really good. Brax’s floor 5 buddy, Megan, came back to visit Brax. She’s doing great and it was nice catching up with their crew. The girls hung out in the Endzone and it was a nice distraction for Brax. Sunday Bry came back and the girls watched the Vikes game and some gymnastics. Congrats to Grace on making the 2019 World Team!!

Yesterday, Brax spent a good chunk of time designing the bingo cards for the game she will be co-hosting this week in the Zucker Studio with Shannon from Child Family Life. She had a lot of fun working on this project.

Today was another good day. Counts are still low but should start rebounding anytime now. The general rule is they want your ANC to be at .5 before they discharge and we are currently a goose egg (and have been for some time). We know the drill now, but it doesn’t make it any easier waiting. But on the plus side, Brax feels really good and she’s keeping busy. Today was Build-A-Bear in the lobby so she biked down to do that this morning.

And finally, this coming Monday is Chad Greenway’s big event, Celebrity Waiter Night, where a bunch of the Vikings players bartend and sign autographs and then a big dinner and auction all to support Chad & Jenni’s Lead the Way Foundation. We have done this the last couple of years just as a fun event to do, but this year will be extra special as they have asked to feature Brax’s story. It’s funny how this has went full circle with us going as supporters and now we are the ones they are helping support.

As always, thanks to everyone for the continued support and prayers! It’s been a long 8 months, but we are taking it one day at a time and we are getting really close to getting things back to our new normal – back to school, practice, activities, etc – with the treatments worked into the mix. THANK YOU!

Brax finished the 2nd to last treatment of Delayed Intesification on Tuesday. She is in the home stretch now in regards to intense treatment and is looking forward to wrapping this phase. She is still in the hospital due to low counts, but once those are up we can boogie.

Until then, the hospital does a great job of keeping the kids engaged (if they choose) and this week has been no exception. Last night Olive Garden had one of their regular family/patient dinners in the lobby, today they tape the PJ Fleck Show onsite (very fun) and later this week Brax was asked to sit in on a speech to be given by Dr. Moertel on some funding he has received.

Overall, she’s feeling really good, a bit tired after the big treatment yesterday, but otherwise doing great considering she’s been hit for the last 7 1/2 months with weekly chemo (yuck!).

We now have her schedule for the next round of treatment which will start later this month or early October. The next phase is called Interim Maintenance II and is the final phase before Maintenance (the last phase). Treatments will go from weekly to roughly every 10 days and should be much easier and less intense. She should be able to get back to doing most things during IM2, besides school, as counts will be a bit compromised. We are all very excited to get back to feeling REALLY good!

Lastly, being 9/11, a HUGE thank you to all those who serve our country. This day will never be forgotten, nor will the sacrifices our service members make every day. THANK YOU!

A lot has happened since our last post and mostly all very good. The only real bummer, but expected at some point during this intense phase, was Brax getting a slight fever on Friday night landing her a hospital stay. She feels fine and is doing very well, but her counts are extremely low causing a neutropenic fever. We won’t get the OK to leave until counts recover and based on where we are in treatment it could be a few weeks potentially. More on that to come….

We will catch up since last post.

On Thursday, August 29th, Brax was asked by Chad Greenway’s team if she would do a small video and be featured during Chad & Jenni’s big annual fundraiser, Celebrity Waiter Night. We did the filming at the U in the Zucker Broadcast Studio and it was a very neat experience. Chad has a locker at U that supplies all kinds of electronics for kids (iPads, Xbox 360s, Playstations, DVD players, etc.) He’s doing a lot of great work in the community and from the sounds of things is looking to make a big donation to the U this year….we are hopeful!

After the filming the girls wanted to go check out the Love Your Mellon party. LYM was on campus that day with free hats and ice cream – WIN-WIN!!

Friday, August 30th, we were at UNRL to have lunch with the team. As mentioned before, we are partnering with them for all of Brax’s clothing for her soon to be launched fund to help raise money to support projects at the U.

We had a quiet Labor Day weekend and stayed close to home. It was nice having the whole family together and feeling really good overall.

On Tuesday September 3rd, we headed back for another round of chemo. At this appointment her counts had started to drop quite significantly and we knew that either transfusions or a hospital stay could be very likely in the coming days/week.

The next few days were fine. Brax was feeling good and energy was good overall, but her temp started to slowly climb on Thursday night and continued to climb over the next day. By 6PM on Friday, it finally reached the point that we are required to come in (100.4). We headed in and were admitted to the Emergency Department around 8PM. Her temp was now at 101.0. Again, this is very common during this phase of treatment, but the possibility of infection is always the biggest concern and the reason for such a swift response. In Brax’s case, and every fever thus far, they have been due to low counts and NOT infection, which is huge and much easier to control.

So as of tonight, we are camped out indefinitely at the hospital until counts can recover. With two rounds of chemo left during this phase of Delayed Intensification, we are preparing for an extended stay. Thankfully Brax feels good and is in very good spirits.

The end is getting very close and we are all looking forward to getting back to “normal” or our “new normal”.

Thank you again to everyone for all the continued prayers and support. We have said countless times throughout this process we are so blessed to be surrounded by such wonderful people – family, friends, teammates, teachers and medical team. Every one of you in some way or another has helped make an extremely difficult situation very manageable for all of Team Brax! Please continue to keep Brax in your prayers. It’s been a long a long 7 months, but we are getting close.

Also, as we have mentioned in some previous posts, Brax will be launching her TB1 Fund this month. The fund will help to support programs at the University of Minnesota Masonic Children’s Hospital that Brax is passionate about. She has spent a lot of time here and wants to help give back. As the launch gets closer we will be reaching out to everyone for support. And what better time to launch than during Childhood Cancer Awareness month!