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!
Brax’s counts were great this past Tuesday and she officially started Maintenance! This is the final phase of treatment and will last until the end of May 2021. Yes, it’s long, but things should be much smoother sailing and we should be able to get back to “normal” life – school, sports, travel, etc. The first two weeks of Maintenance, Brax will have cranial radiation due the ammount of Luekemia found in her CSF (spinal fluid) at diagnosis. This is what put her into the Very High Risk category as well. We have been told radiation should go very well, with no major side effects. The most common side effect is that some kids feel tired, but usually that is a delayed response and they don’t feel it until radiation is done. At this point, after everything we have been through, if feeling a little tired is the worst of it, we will gladly take it.
In other news, Brax got a personal tour of the Viking’s Practice facility this past Monday. They rolled out the red carpet for her and showed her a lot of areas normally restricted (ie. Locker Room, War Room, etc) Thanks to Michael @ UNRL for coordinating this with Glenn and the Vikings.
Also, some more exciting news! Brax was cleared to travel to the Outback Bowl in Tampa on New Year’s Day! She initially didn’t think she’d be able too, due to timing of radiation but Dr. Sadak had her schedule worked out so we can head down for a couple of days. She’s thrilled, we’re thrilled! Thanks Dr. Sadak!
And for the cherry on top of week, this past Friday Brax was invited to give a speech to the Gopher Football team about her story. Coach Fleck asked her some time ago if she’d be willing to come in during bowl week prep and do that and she, without hesitation, agreed. She wrote the speech herself and she did a great job! If you haven’t seen it yet, check it out. It’s on our Fun Stuff page or you can click HERE to get there.
Brax is feeling really good overall and we are hoping it will just continue to improve. It’s been a really good few weeks and it’s so nice to see after such a long year.
And quickly, thanks to everyone who has donated or given gift cards during our 12 Days of Swag campaign. And if you haven’t, you have until midnite on Christmas Eve! Any donation (any amount) will be used toward food gift cards for U of M Families and you will be entered into a drawing for 1 of 12 TB1Fund Clothing items. Winners announced Christmas Day!
Thanks as always, to EVERYONE, who has and who continues to keep our family in their thoughts and prayers. It’s been a tough year, but we are coming out of this stronger than ever.
Brax and the entire Battaglia Family are wishing you and your families the Merriest Christmas and Happiest New Year! We are excited for 2020!
****BUDDY UPDATE: Brax’s good buddy Megan was discharged this past week and will be home for Christmas – so AWESOME! Casey’s spot of cancer was remove and no further chemo needed – just more frequent scans – so AWESOME! And, Bella will soon be home to start treatment much closer to home at Masonic and things are going in the right direction for her too – so AWESOME!
We wanted to post a quick update to keep everyone in the loop. Brax is doing great and feeling great, but counts have not been high enough to start Maintenance. She didn’t make counts on 12/3 and then just barely missed again on 12/10. We were surprised on the 3rd and shocked on the 10th. She’s feeling the best she has felt since this summer and has been out and about and getting in gym time. We go back this Tuesday and based on where things have been trending she should be well above the threshold. The bummer of being pushed back two weeks now, is that radiation will be over the holiday break…..and EVERY DAY for 2 weeks…bummer. It’s out of our control, but stinks nonetheless. She was excited to go the Bowl Game in Tampa and have radiation done before Christmas. But, as we have learned throughout this process, everything is out of our control and we are so thankful/grateful for where we are, regardless of the things we have to miss at this point in time. We will update next week after Tuesday’s appointment.
Please continue to pray for Brax, Bella, Megan & Casey. They can all use the continued prayers.
And a quick side note, check out the Fun Stuff page to see Casey accept the 2019 Disney Spirit Award. Congrats Casey and well deserved.
Brax & TB1Fund are running 12 days of Swag starting Friday the 13th thru Tuesday the 24th.
All donations (any size) made to TB1Fund during this period will be entered in into a drawing for 1 of 12 prizes. Money raised during these 12 days will go toward the food gift card drive for patients and families of the U of M Masonic Children’s Hospital. We personally know how nice it was to be order something outside of the hospital, but it can add up and we want to do something small, yet directly impactful for inpatient families looking to mix it up. You can also submit physical or electronic gift cards and those will count as a donation too. Email email@example.com for more info. Any cards are accepted, but BiteSquad, DoorDash and/or GrubHub cards work the best as they offer the biggest selection + delivery…..very handy to not have to leave the hospital and have food delivered.
And thank you to everyone who has contributed thus far. We surpassed $1,500 in GC’s already and would like to hit $2500 by December 24th. Thanks to Integrity Global Solutions for the $50 Door Dash cards and thanks to Bite Squad for the $25 gift cards.
TB1F is off to a great start and we have a lot planned for 2020!
Thank you to everyone who has donated and volunteered!
Thank you to all of our sponsors and partners – you are making a difference!
We are hoping to make a big end of the year push and we are currently looking for help with food gift cards (BiteSquad, Grubhub, DoorDash, etc.) for families on floor 5. You can help by making a donation to the fund or by sending gift cards. The hospital food gets old and it’s an added expense for all family members and gift cards are a HUGE help! If you can help, please donate at www.TB1Fund.org or reach out to us via email or phone at our FAQ page http://braxtonbattaglia.com/faq/ if you’d like to send a physical card.
In regards to our schedule, we start our first treatment of Maintenance tomorrow. This last phase is 18 months long (yes, it’s LONG) and it’s broken up into 90-day segments. Radiation will start next week and last for 2 weeks.
We will update soon with how Brax is feeling.
Thanks again to everyone for the continued prayers and support. Every day is one day closer to being done!