It is hard to believe that we are already a few days into September. Even with Covid/Cancer the summer still flew by like normal. We have talked about putting in a sport court for several years and decided that this was the year to pull the trigger. The girls have enjoyed getting out on the court pretty much daily. Two of their favorites are shooting hoops and playing pickle ball. Both Brax & Bry have expressed interest in wanting to get into golf. We have tried to get them out at least once a week over the last month or so and they both really like it. The girls continue to get to the gym to practice gymnastics.
The July Toy Drive was a great success! Toys are being distributed at the hospital and at Brax’s last appointment several of the staff at Masonic commented on how they are helping to brighten the day for many patients. This would not have been possible without the help from all of you and the collaboration with BMW of Minnetonka and we can’t that you all enough for the continued support. In addition, TB1Fund partnered with BMW for their “Drive On” event in which BMW of Minnetonka donated $1000.00 to the fund!
TB1F also received a special donation from some of Brax’s neighborhood friends. Evelyn and Andie did a friendship bracelet fundraiser and split the money between saving the Red Pandas and TB1F. It just shows how people of any age can make a difference. They inspire us with their hard work, big hearts, creativity and generosity. Thanks girls!
TB1F is going GOLD this month for Childhood Cancer Awareness. In addition to the new merchandise already on the website we have added a special shirt to help promote Childhood Cancer Awareness during the month of September. They say childhood cancer is rare and that is why there is such a lack of funding – we disagree since we have so many friends that are at different stages of their childhood cancer journey. Please join us in Going Gold this month!
Also, now thru September 7th, TB1Fund is giving away 7 FREE shirts, chosen by random drawing. To be eligible, please check out the details via any of Brax’s social media sites.
****PROMO CODE:TB130 for 30% off any TB1Fund gear (use during checkout)
Things continue to go well overall for Brax and she is halfway through her final phase of treatment Maintenance (18 months) She has 8 rounds left to go and we continue to move closer to the finish line of this marathon. We wish everyone a healthy and smooth start to the school year even though things will look very different for most people.
Finally, we are approaching our 1 year anniversary of launching TB1Fund at the end of this month. Be on the look out for some Year 1 updates and our annual appeal to raise some money! We will have new donor swag this year to entice you 🙂
Year 1 was incredible thanks to you all and we are looking to build on it this coming year and continue helping others through their cancer journey.
First, we hope everyone is doing well and staying healthy! We haven’t posted much in the last couple of months and will get everyone caught up!
Today marks the 300 day countdown until end of treatment for Brax. 554 days down, 300 to go….we are heading the right direction. Brylee wanted to do something special and threw together a great little 300 Day Party today for Brax and it was SPECIAL! Bry has a huge heart and whether or not Brax will admit it, Bry has been a huge part of Brax’s recovery (physical, mental, and emotional). Quite the duo!
Brax is feeling really good and things are continuing to move in the right direction. In general, Maintenance has gone pretty smoothly and besides the 1 week a month she has treatment, she feels really good the remaining 3 weeks. We will take it!
We head back this Tuesday for another round of treatment and blood work.
Besides the normal kid stuff, Brax has been busy during her “good” 3 weeks. She has spent a lot of time with her new cousin Max, trying to see him at least a couple times per week. She love babies (and is very good with them).
We also celebrated Bry’s 1st Communion in June. Due to COVID and all the limitations, we were finally able to get this in.
Brax has been busy with gymnastics and is back to the gym 3 times per week with her coach Kim. We are still taking precautions, so as much as she’d like to be back with the Team, she and Bry are practicing together due to her being more compromised.
She has also been able to get out the “farm” to ride some horses, which she has really enjoyed doing. She has had the chance to ride a couple different horses these last 2 months. Below are pictures of Buck (left) and Doc (right)!
4th of July this year was probably our best in the last couple years…..hard to believe a Covid 4th could be better than anything, but with Brax finally feeling well and being able to spend time with family for some extended time was awesome! Last summer we were right in the middle of intense treatment and the summer before we were dealing with arthritis (or what was diagnosed as arthritis, but possibly early onset leukemia).
A few weeks ago, the girls were able to have their end of season formal gymnastics banquet too. The program was great and it was nice to see a lot of the kids and families we have not seen in months. Thanks again to Jen for putting that together and the great photos of the girls. Brax’s photo from the event below….turned out great!
Brax has met many new friends in the cancer circle and a couple weeks ago we were able to catch one of Jake’s baseball games. He’s doing awesome and will be done with treatment a couple months before Brax. It makes the heart happy to see these kids outside the hospital and doing well……being “kids”.
And last week Brax was able to take in a few events at the 3M Open. It was a much different experience this year, but it was still a blast to get out and see some golf. Matthew Wolff (last year’s Champ) even took some time on Hole 13 to come over and chat with Brax and gave her a signed ball. Thanks Ryan!
In other news, thank you to everyone who contributed to Brax’s July Toy Drive with BMW in support of the Masonic Children’s Hospital. We had a great response and will post pictures this coming week. Thanks to BMW as well for partnering with us and for being the toy drop location. We hope to make this a yearly event, due to the success we had this year and for the need it fills at Masonic.
Also, TB1Fund (Brax’s nonprofit) has done incredibly well this year thanks to everyone’s support and we hope that continues. In partnership with UNRL, Brax has released some new items on the store and more will be coming later this summer/fall. Please check it out at www.TB1Fund.org/Merch Use the discount/promo code TB130 for 30% off any of your TB1F gear.
Finally, we wish everyone a happy and healthy end of the summer and back to school (however that may look for each of you). We continue to ask for your prayers over these last 300 days and please also include Brax’s other good buddies going thru treatment as well, especially Bella, Megan and Jake.
Because of the current and ongoing restrictions in place to safeguard patient’s health during the COVID-19 pandemic, areas such as Kyle Rudolph’s Endzone, the Zucker Family Suite & Broadcast Studio, and many other areas generally used for recreation have all been closed. In addition, many items generally made available for patient/family use are now in short supply as they are not being re-used. TB1Fund in partnership with BMW of Minnetonka are holding a Toy/Book/Game Drive for the month of July.
Child Life Specialists who are working to meet the mental, emotional, and developmental needs of the patients and families, say funding for additional toys, games, books, and comfort items is critical at this time. For example, two-player board games and educational books are important as families are struggling with isolation while practicing social-distancing in the hospital setting. Due to restrictions and limitations on visitors and deliveries to Masonic Children’s Hospital, BMW of Minnetonka has stepped up and offered to be a physical drop off and storage point for the month of July. On Friday, July 31st we will make one BIG delivery to the hospital.
You can help in one of three waysby visiting https://tb1fund.org/july-toy-drive 1) Drop a new toy/book/game/gift card off at BMW of Minnetonka during the month of July. 2) Shop online and have a new toy/book/game/gift card shipped directly to BMW. 3) Make a donation to TB1Fund that can be used to procure items of need – click HERE to donate.
Brax has created “Wish Lists” on both Amazon & Target to make things extremely easy for anyone who has no idea what is currently a “hot” commodity in the hospital. Use this as a guide and feel free to do your own thing too – get creative and have fun with it!
Thank you to everyone who is able to help at this time and please know that something as small as a new toy/book/game is making a BIG difference in brightening the day of kid and/or family confined to a hospital room all day, everyday during this unusually challenging time.
We hope everyone is staying both healthy and safe during these challenging times.
It’s been a busy and exciting month since we last posted. Many good things happening in spite of all the ugly.
Friday, May 8th, Brax’s good friend Casey wrapped his last round of chemo after beating cancer a 6TH TIME! We drove down to Masonic to wish him luck before he went in. Due to all the distancing measures, nobody is allowed to accompany adult patients in the hospital any longer so we met quickly outside before he went in.
May 22nd, the Pioneer Press posted a nice article regarding Casey beating cancer for a 6th time and also his relationship with Brax and her good friend Megan going through cancer as well.
If you haven’t seen it, check it out at the link below.
On May 11th, we welcomed new cousin Max to the family. Brax & Bry are thrilled to have a new little cousin. Any chance they have to get their hands on him they jump at it. Congrats to Em & Bryton!
May 12th Brax was back at Masonic for her monthly treatment, which consisted of IV Chemo and Pentamidine. Everything went well and all of her numbers looked really good. She’s feeling the best she has felt and getting back to pre-cancer strength. Below are some pics of her working out a bit. Check out that hair too!!!!
And to wrap up the month, Brax graduated from 4th grade and will be moving to the Intermediate School next year! New school, New start…she’s excited, as are we, for her to get back to being a “normal” kid!
In terms of treatment, we are now officially down to 1 year left!!! May 28th, 2021 will be her final day! Here is a list of what we have left:
12 Months of Treatment Remaining (14 Completed)
4 Lumbar Punctures with Triple IT Chemo Treatments
12 Vincristine IV Chemo Treatments
60 Days of Steroids
362 Days of Chemo Pills
Her next scheduled treatment is June 9th and that will be a bigger one, with an LP Triple IT Chemo and then upstairs for more IV Chemo.
In wrapping up, our big event planned for this spring and postponed until July, the TB1F Champions Cup, we have officially rescheduled for Spring 2021. Our main focus is the health of our guests and we want to make sure we are keeping everyone safe and at this time with so much uncertainty we, as a group, feel this is the best decision. Everyone who has purchased tickets will be rolled over to next year’s event and we will send a separate announcement out this coming week to all ticket holders with more info. With the extra time we may be able to open up some more tickets and make this event bigger and better than we initially planned. Thanks again to all of the sponsors, partners and guests in supporting Brax’s mission of brightening the days of kids going thru childhood cancer and we are excited to see you all next spring.
First we are hoping that everyone and their families are healthy and finding ways to navigate these trying and difficult times. COVID-19 is affecting EVERYONE in some way, shape, or form, be it physical health, mental health, financial health, you name it. We are wishing you all the best and hoping we can get back to somewhat more normal days very soon.
Things here have been pretty uneventful, which is good, and everyone is healthy. Brax is feeling the best she has felt since pre-diagnosis and its AWESOME. 450+ days since we started this journey and things are finally starting to normalize a bit as a family unit. If COVID-19 weren’t a reality, we’d be in great shape. We still have over a year of treatment to go, but based on how things are currently going, we are optimistic that things will continue to go smoothly and we can continue to focus on non-cancer things.
Brax had another treatment last week, April 14th and everything went very well. The hospital is now a completely different place with all the rules and restrictions in place. It’s certainly not as welcoming as we know it. We say how thankful we are to not be going through diagnosis and initial treatment this year, as that was scary enough as it was, and now for all of these newly diagnosed families to have to add COVID into the mix is just not right. Current restrictions only allow (1) parent to be with the child now too, which is hard. The other parent is not even allowed to visit in an attempt to keep everyone healthy, which is understandable, but no less difficult.
Besides treatment, Brax has been keeping busy with school, practice, and things a 10-year old should be doing. Easter was great, the weather is getting nicer, the girls are getting along (for the most part) and we are still married (touch and go some days), so we can’t complain. We are blessed!
In closing, our big event planned for this spring, the TB1F Champions Cup, we have officially postponed until July 17th. Our main focus is the health of our guests and we want to make sure we are keeping everyone safe and following CDC guidelines. We are hopeful this date will hold, but we know there are no guarantees and we will review this new date once we hit June. Tickets are still on sale and we have had a great response to the event. There are currently only (2) general tickets and 5 horses left. It’s shaping up to be an exciting evening and a very “feel good” event. We have had a lot of people step up to make this event very special. Thanks to all of them! You know who you are! Sponsors and partners listed below. Thank you!
For more info or to purchase tickets, please check out the link below.
A lot has happened since we last posted, with the biggest event being the Coronavirus and the challenges associated with it. First, and most importantly, we want to extend a huge THANK YOU to all of our incredible doctors, nurses, and staff across the country for everything you do. Second, we want to extend our heartfelt sympathy to all the families affected by this pandemic, both from a health and financial perspective.
In terms of where we are with things, we will catch you up from where we left off.
If you don’t follow Brax on social media, based on our last posting everything was looking good, we were in the ER for a fever, but counts were good and we went home. The next day however, Sunday, February 23rd the fever came back and we were admitted. That week was shaping up to be BIG & FUN, so it was a bummer. She had her 2nd Dunkin’ Donut Ever Give Up day planned for Tuesday. We still held the event, but instead of hosting, Brax was in-patient. On Wednesday, she was invited to the Gopher Men’s basketball game to help introduce the U’s new therapy dog, Rocket, which she was super excited for…another bummer. And the the icing on the cake, quite literally…..she was supposed to spend Thursday afternoon with last season’s Kid’s Baking Champion Winner, Paige getting some lessons. One thing we have learned through this whole cancer journey is that it’s very hard to make plans more than one day in advance.
Brax was in the hospital for over a week and of all of our stays, besides initial diagnosis over a year ago, Brax just didn’t have any energy and was very fatigued, which is unlike her. Being at an “easier” point in therapy, or so we thought, things were not adding up. We met with her docs and nurse practitioner and all of her counts looked good, low but good, so their thoughts were it was partly due to the dose of her maintenance chemo in addition to delayed effects of radiation. We were discharged on March 3rd and things slowly started to improve. We got some more answers at our next follow-up, which started to explain why Brax was feeling so crappy. They ran a test while she was inpatient to see how she was metabolizing the current dose of chemo and it turns out the initial dosing was simply too much. After talking with Lexi, they start everyone around the same level and as you progress through maintenance some kids end up at 150% of initial dosing, while others end up at 25%. It has no impact on effectiveness of treatment, but they want to keep ‘your’ specific numbers at certain levels. Moving forward, Brax will have her dosing reduced and we will move up from there, with the hope of avoiding any more setbacks during maintenance. Again, nothing is guaranteed, but we all agreed this was the best plan of action moving forward.
Not too long after being home, Brax bounced back and was back to her “old” normal. She had her spunk and attitude back! Nothing better than seeing your kid feeling good. The things we so often take for granted are so appreciated these days.
This past Tuesday, Brax was back for treatment. It had been 3 months since her last LP….nice break. Everything went well with her LP and after recovery she headed up to the Journey Clinic for more IV chemo and pentamidine. She had been taking bactrim pills, which she preferred, but because they tend to lower your counts they asked her to switch to pentamidine (shown below). She’s not a fan, but better than the alternative.
And a small bright spot amidst all the ugly in the world right now, Dave Puente, a local photographer who we have gotten to know throughout this process and who is also donating his skills at our upcoming event, wanted to come out to family’s homes and photograph them during this pandemic. It was a quick 5 minute shoot that captured a brief moment during a very challenging time. This small (or what was intended to be small) project has now blown up and Dave has opened this up on his social media for other families to get involved. Check it out if located in the metro – instagram @davepuente Thanks Dave!
And just this past Friday, we (TB1Fund), received a call from the U of M Foundation, asking if Brax would be willing to help support Child Family Life and critical funding needed during this time at the hospital. She said “YES!”
Because of the current restrictions in place to safeguard patient’s health during this current COVID-19 pandemic, areas such as Kyle Rudolph’s Endzone, the Zucker Family Suite & Broadcast Studio, and many other areas generally used for recreation have all been closed. In addition, many items generally made avail for patient/family use are now in short supply as they are not being re-used. This appeal for funding is very intentional and very directed. Funding will make an immediate impact! See the statement below from Child Family Life.
Child Life Specialists who are working to meet the mental, emotional, and developmental needs of our patients and families, say funding for additional toys, games, books, and comfort items is critical at this time. For example, two-player board games and educational books are important as our families are struggling with isolation while practicing social-distancing in the hospital setting.
We understand these are challenging times for EVERY family in one way or another, but if you are able to help support the immediate needs, please kindly consider it. We are looking for 1,000 people to donate $5/ea. Share this with family and friends and lets make a difference for the kids stuck at the hospital.
You can make a 100% Tax Deductible donation at www.TB1Fund.org Thanks to everyone who has donated already and anyone that is considering it. Help brighten a day!
Finally, in regards to our big event planned for this spring, the TB1F Champions Cup, we are officially postponing this event until later in the year. Our main focus is our guests health and we want to make sure we are keeping everyone safe and following CDC guidelines. We are working on coordinating dates with everyone involved and are currently looking at July/August. Tickets are on sale and we have had a great response to the event. There are currently only (2) general tickets left and 5 horses left. It’s shaping up to be an exciting evening and a very “feel good” event. We have had a lot of people step up to make this event very special. Thanks to all of them! You know who you are!
For more info or to purchase tickets, please check out the link below.
Thanks again to everyone for supporting Brax in this cancer journey. And we continue to ask for prayers, not only for Brax, but also for her good friends she has met along the way who are all at varying points of treatment – Bella, Casey, Megan and Jake!
It’s been a busy few weeks since our last post. As I type this we are currently in the Emergency Department @ Masonic as Brax has been a little off following treatment last week. She feels OK but has been tired and running a little higher temp than normal (99’s), but today it jumped to 100.6 and they said we should come in for an evaluation. Everything is checking out good. They did a urine sample and that was good, flu swab and that was good and bloodwork which is all coming back good too. So we are assuming she’s fighting a little bug or some of the residual effects of the meds she’s currently on. Either way, they are sending her home and no overnight stay with her ANC being ok.
Now for the latest happenings…..
Tuesday, the 6th, Brax’s good buddy Megan lined up a private viewing of Frozen 2 with the Gopher Football Team and PJ & Heather. We all joined and had a blast. Thanks for the invite Megan!
Then on the following Monday, Brax joined the Women’s Gymnastics Team at practice and hung out. Thanks for the invite Coach Hansen! Always a good time hanging out with the girls!
Then this past week Brax attended her first Wild game with very special friend Michael. They had great seats on the glass and then Michael hooked her up with post game locker room passes. She met Dumba, scored Dubnyk’s stick, a game puck, and the Wild won big in a shutout…great night all around! Thanks MJ!
This week is another busy week with some exciting events/activities coming. Check back at the end of week for all the updates!
Also, TB1F Champions Cup is off to a great start. There are only a few tickets and 10 horses left. It’s shaping up to be an exciting evening and a very “feel good” event. We have had a lot of people step up to make this event very special. Thanks to all of them!
For more info or to purchase tickets, please check out the link below.
It’s been a bit since we have posted on Brax’s actual status, and going forward at this point, assume No News, is Good News! We are so thankful Brax is doing and feeling as well as she is. We officially hit our 1-year anniversary of diagnosis on January 29th. We were in the hospital for Super Bowl Sunday last year and Brax had just started chemo and felt crappy – it was one of her worst days.
Below is a flashback to the video Grace & Temple sent Brax 1 year ago. She has continued to kick cancer’s butt and has 16 months left. She officially rejoined her team at TCT today which was huge! She will be doing 1 day a week on team with the plan to slowly transition back to full time. Slowly putting things back into place and it’s awesome! She planning to go back to school after spring break.
Last Saturday, Brax was invited to be a Jr. Captain for the U of M Women’s Gymnastics home opener. It was a great experience and a great meet!
And for the big news, we are holding our first major fundraising event in April. The event is scheduled and has been in the works for awhile now.
TB1F Champions Cup will be held Friday, April 24 at the North House in the North Loop in Minneapolis. All proceeds will help Brax in supporting her mission at the University of Minnesota Masonic Children’s Hospital of helping to provide immediate support and encouragement to patients and families.
Tickets will go on sale this Wednesday, February 5th at 11AM.
Please visit www.TB1Fund.org to purchase tickets, a horse, or sponsorship to the event. It’s shaping up to be a fun event and is already getting a lot of positive feedback. UNRL has committed to sponsoring the Winner’s Circle and Jester Concepts is doing the catering. Jester Concepts is known for their restaurants which include Parlour Bar, Borough, PS Steak, Monello & Constantine.
It’s been a busy couple weeks for Brax and everything has been going very well. We can’t tell you how nice it is to finally have some normalcy back after nearly 1 year. The family stayed close to home this year and had a GREAT CHRISTMAS! We are realizing how BIG the little things are after this past year. #GRATEFUL
As of writing this, Brax is nearly done with her radiation treatments. She has 10 total and completed her 8th one today. She will finish on Wednesday the 8th, which will be exactly 1 year to the day that her symptoms first started. Below are a couple pics of the room and the special mask Brax wears during treatment. Things are going very well and we are hopeful she will breeze through the last 2 treatments.
Brax has been getting back to gym for regular workouts and getting out and about a little since she is feeling really good. She had a chance to catch up with her good friend Megan for a pottery day after Christmas. It was so nice seeing Megan and her doing well!
Due to timing of radiation and how Christmas and New Year’s fell, Brax initially thought she wouldn’t be able to make the Gophers Football Bowl game in Florida…..she was bumming big time. The plan all along was to go once the game & date was announced, but because of the delays in counts it pushed everything back. However, Dr. Sadak worked some scheduling magic which allowed Brax and the family to fly down for a couple days. Brax has not been outside a 25 mile radius in nearly a year, after traveling frequently nearly her entire life. So this was BIG to get back on plane. As you can see below, she wasn’t taking any chances getting sick….hahahahaha!!
We got to Florida without any issues and saw a phenomenal Outback Bowl! The weather was great, the seats were great and the WIN over Auburn was the cherry on top of historic season for the Gophers!
Brax experienced some moments she will never forget! After the game, good friend Casey O’Brien ran over to see Brax. Check out the video on the Fun Stuff page – it’s AWESOME!
We hung out for a bit after the game to see the guys come out of the locker room and this ended up being another moment Brax will never forget.
Coach Fleck came out sporting his TB1F hoodie and had a fun exchange with Brax. Again, you have check out this video on the Fun Stuff page – I promise it won’t disappoint. Coach Fleck, Heather, Casey and entire Gopher Football family have been so supportive of Brax this year and we are so thankful for the friendships built.
After a whirlwind couple days, the girls found a little time to play in the pool before we had to fly home. It was hard leaving, but we are so thankful it worked to go and things went as well as they did in every respect – health, travel, weather, game…..
We got back to MN late on Thursday, Jan 2 and Brax was back at it again on Friday. She was inducted in the Minnesota Gymnastics Foundation Hall of Fame as this year’s Abby Szott Courage Award Winner along with two other very special girls we have gotten to know, who have also beaten cancer. Strong girls!
Saturday all the girls were back at the U to shoot a social media ad for the January 25th Cancer Awareness Meet.
Then to end the week, Brax was asked to give an interview with Hannah Flood and Fox 9 News regarding her relationship with Coach Fleck and the football team this season. Below is a small part of the interview that aired on Fox 9 Sunday night.
Brax has been busy to say the least, but she’s taking advantage of feeling good and loving the fact that she is able to do all of this.
Thanks again to everyone who is following Brax’s Journey via this page or social media and for everyone that has helped support TB1Fund and her mission to help other kids and families at the U of M Masonic Children’s Hospital. It’s awesome to see the support and the good that is coming of this.
Thanks to everyone for the continue prayers and encouragement. The mental part of this battle can be just as challenging as the physical and our TEAM of family and friends is UNMATCHED! THANK YOU!
Finally, we’d like to ask you to continue to keep Brax’s buddies Bella, Casey & Megan in your prayers as they continue kick cancer’s butt as well!
And as a quick send off, check out UNRL’s Ending of a Decade video below. Thanks to MJ and his Team for all the support this past year. We are looking forward to 2020!