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.
www.TB1Fund.org to donate
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!
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
It’s been about 2 weeks since we last posted and things have been going great for Brax! She’s feeling really good, getting back into some of the home bound schooling, and getting back to the gym. It’s great seeing her feeling this well. We had a couple treatments last week which she handled very well and we had this whole week off – NO TREATMENT, which is a TREAT!
As the title of the post suggests, after 9 months Brax’s medical bills are approaching $1.1M. Again, we are very blessed with awesome insurance, but I can’t imagine the families that have to worry about the cost of treatment in addition to worrying about their kids health. That is part of the reason we wanted to get TB1Fund up and going to help with some of the smaller things. And THANK YOU to everyone who has contributed. We are off to great start and have some fun things planned. If you haven’t checked it out yet, please do at some point. www.TB1Fund.org Also, when there, please sign up for the updates to keep informed of upcoming events.
On Sunday the 13th we had a big group of people who came out to support the Leukemia & Lymphoma Society’s Light the Night Walk. The weather that night was not great, so Brax decided she didn’t want to risk it. Bry was in charge of carrying her white survivor light. Red for supporters, White for survivors. It was a great event and all the money raised for this event goes to help support the efforts of LLS. They are an amazing organization!
This past weekend the girls had fun just hanging out. The simple things! The things we always take for granted are much more appreciated these days.
Thursday Brax had a truly ELITE day hanging out with Coach Fleck at practice. Heather stopped by to say Hi and she got some pics with her favorite Casey O’Brien, Big Daniel, and the team. She also got a personalized game ball from Coach which is very special. He even had them put a gymnast on it….ha!
Thanks again to Coach Fleck, Heather, Casey, Daniel and all of the Gopher Football Team for an incredible afternoon. See you all Saturday!! Good Luck!
Also, a quick reminder our next TB1Fund event will be the Flippin’ 5K hosted by TCT to help support TB1F. The race/walk/relay will be November 16th and we are hoping for a great turnout. For more info or to register, click on the image below. If you can’t participate, but would still like to contribute, please consider making a donation on the TB1Fund Site.
And lastly, we’d like to ask everyone who reads this page to also keep Brax’s good friends Bella & Megan in their prayers. Bella is good family friend and neighbor who was diagnosed about a year ago with AML and has relapsed and is now being treated in Houston due the complexity of her case – please pray for her and her family as they continue their fight. We met Megan and her family on Floor 5 and became instant friends. Megan had osteosarcoma and finished treatment this summer. She is cancer free, however, she is experiencing heart failure due to the the chemo she was on. We are all hopeful they will get it corrected ASAP, but she will most likely need a heart transplant at some point, but they won’t even look at that until she is cancer free for 1-2 years. So, again, we can’t thank everyone enough for all the continued prayers and support for Brax and we kindly ask you to please add Bella & Megan to your prayer list as well. Thank you!
So, as of the last post on Sept 25th, Brax was still in the hospital waiting on count recovery. By Friday, Sept. 27th they finally came in and told us to go home. The Fellow said this was the most ridiculous hospital stay he has ever seen, but in a good way. The whole team agreed that it would be best to send us home and we weren’t complaining. They said they “checked” all the boxes and everything was trending in our favor to go home, even with the low counts. Needless to say, we packed up as fast as we could and took off!
Since leaving, Brax is feeling great and doing awesome. We are so happy to finally be through the hardest cycles of treatment and moving on to the less intense cycles. Interim Maintenance II is our next round and we actually started today. It was scheduled to start last Tuesday the 1st, but counts were still a bit low. Brax was actually very excited to NOT start last week, as she was enjoying her “chemo break” and we were busy after being away from home for 3 weeks.
Saturday the 28th, the day after being discharged, ESPN released the video of our good friend Casey O’Brien on College Game. Casey has beaten cancer 4 times and is a truly amazing person. He’s been a great inspiration not only to Brax, but to our whole family. He a big part of our team and a great person. We posted his video on our Fun Stuff page – check it out – you wont be disappointed.
On Monday, we had Chad Greenway’s Lead the Way annual fundraiser and Brax was the featured patient during the “Fund A Need” portion. The video that was shown can be seen on the Fun Stuff page. It turned out really nice and we were able to help raise a lot of money that evening for Chad’s Foundation. This is always one of the most fun events of the year.
On Thursday, we had more exciting news relating to the TB1 Fund site….the store is now OPEN! Thanks to UNRL for partnering with us on this project and for helping to support our cause. A percentage of every item sold in the store is going back to TB1F. Check it out when you have a minute www.TB1Fund.org/merch
Friday we were back at UNRL working on some upcoming things. It was a fun afternoon and Brax walked out with the new Crossover Hoodie II. The team at UNRL has been great to work with and great with Brax!
This past Saturday, the whole family was planning to do the Homecoming football game, but the weather didn’t cooperate so the girls stayed home with G’ma & G’pa B. The weather wasn’t great, but the game was. The Gophers are off to a great 5-0 start and a Top 25 ranking. Coach Fleck and the Football team have been great with Brax from very early on and Coach Fleck and Brax have a special little bond…needless to say we are big fans!
They aired a small part of the ESPN video on the big screen during the game – pics below.
As we have said many times and will continue to say until this is over and presumably much longer, thank you to everyone for their continued support and prayers. We are very blessed to be surrounded by our army of family and friends.
Also, thank you to everyone for supporting Brax and TB1F in our mission to help other kids going through the same situation as us. We have had overwhelming support already and we hope this is only the start of much bigger things.
Please continue to keep Brax in your thoughts and prayers! They are working! Thanks again!