Month: November 2019

It’s been a big week since the last post and we are happy to report that Brax is on the upswing and doing very well. Below is a recap of the last week and half.

Last Friday, the U of M had one their big yearly fundraisers. This particular one in the fall is called Fashion Fest and both the girls were asked to model for UNRL. UNRL is a local clothing company that is doing all of the gear for TB1Fund and a great group of people. Brax and Bry were able to wear their clothing and had a blast doing it. It was late by the time they hit the runway, but Brax powered thru. We also did this event with the Battaglia brothers and significants. It was a great night start to finish and a lot of money was raised for the U of M…in the neighborhood of $480K!!

You can check out the runway video on the Fun Stuff page. Other photos from the night below.

Saturday was race day! We got up early (and it hurt), and headed over to Champlin for the 1st Annual Flippin’ 5K hosted by Brax’s gym, Twin City Twisters, aka TCT. We had a great turnout, especially since it was done on pretty short notice and happened during deer season. So to see the crowd we got was impressive. We can’t thank Kim and Lisa for the time they put in to get this organized and in before the snow fell. It was AWESOME! And besides a great weather day, a great race course, great people and support we were able to raise nearly $8K for TB1Fund. All of which Brax will be able to use to help families in need at the U of M!

We had a couple days off after Fashion Fest and the Flippin’ 5K to recover and then we were headed back to the U for appointments and treatment. Tuesday was officially Brax’s last treatment of Interim Maintenance II (see the roadmap below). This was another HUGE milestone and we are all happy to be done with it. The next phase (and FINAL phase!!) is Maintenance. Maintenance will begin on December 3rd and last for 18 months, broken up into 90-day cycles (schedule below the roadmap). Brax will do radiation for the 1st 2 weeks and then we are only back at the Journey Clinic once a month! She will take daily meds and chemo pills at home throughout this process, but will not be required to come in other than the one time per month (assuming all goes well).

We are so looking forward to Brax feeling well. It’s been over a year of feeling crappy between JIA and cancer and we are ready to get some normalcy back.

And finally to cap off Brax’s week o’ fun, TB1 Fund held our first hospitality day at the U of M. This was important to Brax and it turned out great. The event, dubbed “Donut Ever Give Up” was held in the lobby and thanks to Steve and Dunkin’ it turned out awesome. Brax is not a big sweet/candy girl, but she loves donuts and has always loved Dunkin’. So to get them to team up with TB1 Fund was pretty special. We are hoping to do this quarterly for families and patients at the hospital along with many other things. Again, thank you to everyone who has supported TB1Fund. It’s off to great start and we are excited to see all the good things that are coming of it. If you haven’t checked out that site, please do at www.TB1Fund.org

As always, thank you to everyone for the continued prayers and support! It’s been a long 10 months, but everything is moving in the right direction. Please continue to keep Brax in your prayers as we still have over a year and a half of treatment remaining, but it should be much smoother sailing. In addition, please continue to keep some of our good friends we have known for years and others we have met thru this journey in your prayers as well, specifically – Bella, Megan, Jake & Casey.

Let’s start with FUN stuff first!! The girls always do a themed Halloween and this year was no exception. They went as Pumba & Timon. Vinny is never left out either (not by his choice) and went as Simba – he was thrilled!

Brax also got some baking in. She’s still on a baking kick and did themed cupcakes for the neighbor’s party. They turned out awesome!

But…….since Halloween until this past Sunday, it’s been a bit of an adventure, so we apologize for the delay in posting, but you will see why below…..

After Brax’s last treatment on Oct 29th, she didn’t feel like she normally does after a treatment, but we had nothing to go off of other than it’s been a long 9 months and it may just be wearing on her. By Friday, Nov 1st, however, she started to develop mouth sores. We have heard about others getting these (and quite bad), but Brax had not experienced these to any significant degree thus far. She has had a couple very small ones throughout treatment, but nothing worth noting. That was not the case after this last treatment. She got them and they were extreme. She started to get them on her lower lip, under the tongue, inside the cheeks and in her throat. This was the worst week of treatment she has had since shortly after being diagnosed in regards to the pain and discomfort. Due the severity of the sores and her counts going from a normal range to a rock bottom ANC of ZERO in matter of days, they admitted us back to the hospital last Tuesday the 5th. They immediately put her on antibiotics and started testing for bacterial infections. With counts dropping as fast as they did, they assume it was caused by the body’s response to the sores, but also were thinking there was some other contributing factor. Thankfully all bacterial infection results came back negative, but they wanted to check for fungal infections. Just hearing the words “fungal infection” was both hard and scary for us as we know a family in a similar situation who had a very hard go with a fungal infection – to the point they thought they may lose their child – so it was nothing we took lightly. Thankfully, for that family, their child made a full recovery after 2+ months in the hospital and thankfully for us those test results all came back negative as well and counts slowly started to rebound near the end of last week. We received the option to be discharged on Saturday or Sunday, but due to the intense pain of the sores, Brax opted for one more night in the hospital to receive the extra care. By Sunday she was feeling better and we got home early that morning. Not a fun week, but we WON!

And as some background, we did ask why this happened as Brax has responded very well to the Methotrexate for the last 9 months, so we thought we were in the clear. They told us during Interim Maintenance II they gradually increase each dose of Methotrexate as the patient progresses through this phase, if they are A) tolerating it well and B) other chemistry numbers are reporting good. Ideally the more they can give the better the outcome and the bigger the “punch” so it’s all part of the protocol. And Brax fell into this category, however, they hit her “breaking” point this last round and it will be scaled back moving forward.

We went back today for anticipated treatment since we missed last Thursday’s treatment. We were unsure if Brax would make counts today to proceed, but she did…..just barely. We needed an ANC of 500 (she was at 500) and platelets of 50 (she was 52) – typical Brax fashion! So, after consulting with Dr. Sadak, he recommended we move forward with the IT chemo treatment (in her spine) and also continue with Vincristine IV chemo, but hold the Methotrexate treatment this week to allow the mouth sores to fully heal and keep Brax on track going forward. He said it’s much better to skip one now than get so knocked down we have to skip many in the future. We all agreed and everything went great today and Brax is feeling really good again after a “miserable” week last week, in her words.

The one bright spot of this past weekend was the Gopher’s Football WIN! Congrats guys on a monster win for the U and Minnesota!

Brax is busy in these upcoming weeks so we hope she continues to keep feeling good now that we have the mouth sores under control. This Friday is the U’s big Fashion Fest Fundraiser and both Brax and Bry were asked to model UNRL clothing. Brax will be a game time decision, but Bry is IN! Then on Saturday we have our 1st Flippin’ 5K hosted by TCT for TB1 Fund, with all proceeds going the fund. The weather looks good and we are hoping for a great turnout. It’s not too late to register if you haven’t. You can register by calling the gym 763-421-3046 or by filling out the registration form at the link below: www.tb1fund.org/downloads and emailing/faxing/hand delivering on Saturday.

Also, all of the TB1 Fund Donor gear is in! It turned out great and we are excited to get it out to all the donors. We are continuing to reach out to get sizing info, so if you have not heard from us, you will shortly. Thanks again to everyone for the continued prayers and support! It means the world!

The last few days have been busy for Brax. Monday we had our consult with the radiation team to get the ball rolling. Brax will be starting radiation for 10 days starting in December. The treatment is pro-active in respect to there being no signs of cancer in the brain, but because at diagnosis they found it in her spinal fluid this is to kill any cancer that may be hiding out. It sounds like it should be pretty easy compared to everything she done thus far….easy for us to say.

On Tuesday, she had a treatment of Vincristine and Methotrexate and then went to visit her buddy Megan who is still in ICU but doing much much better. Keep the prayers coming! Tuesday was also the Viking’s Huddle Halloween party. Kyle & Jordan Rudolph came up to the room to personally visit Megan while we were there which was neat and then we all went down to the lobby for the party – busy, but fun. Brax was wiped out by the time she got home.

Wednesday was a BIG milestone for Brax! She finished her very last PEG treatment. This is Brax’s least favorite of all treatments and also the one that causes the most anxiety due to the potential reactions, so we are all celebrating with her on this one.

Also, this week Brax received a letter from the U of M Head Women’s Gymnastics Coach informing her that she has been inducted into the U of M Gymnastics Hall of Fame as the 2020 Abby Scott Courage Award Winner! We were thrilled to say the least. A copy of the letter is below.

Another exciting bit of info….TB1F gear is starting to show up. If you want to order anything, please do as a percentage of all sales go back to the fund. Check out the store at the link here www.tb1fund.org/merch.

Also, we will start getting out all the donor swag as soon as able, so be watching for an email/text/phone call to confirm sizes.

If you haven’t donated, please consider doing so. The fund is off to a great start and Brax is looking for to start helping families and patients.

And lastly, the Flippin’ 5K is coming up fast on November 16th! You can register by calling the gym or by filling out the registration form at the link below: www.tb1fund.org/downloads