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!
It’s been a busy but good week for TeamBrax. We officially ended Delayed Intensification yesterday and we officially launched Brax’s fund – TB1Fund. All very exciting!
Brax is feeling really good, but we are still in the hospital until counts recover. We don’t have any real timeline, which is frustrating, but at the same time the she’s in the best spot she can be with her immune system being compromised and as much as we’d like to head home, keeping her healthy is most important. Below is a snapshot of her current Treatment Roadmap….we are getting there! It’s been a long 8 months, but overall no major setbacks and everything continues to move in the right direction.
Also, we just recently launched TB1Fund. We have been talking about it for awhile now and it’s finally here and launched! In partnership with the U of M Foundation, TB1Fund will allow Brax to help other patients and families at the University of Minnesota Masonic Children’s Hospital. We are very excited about it and so are many others. We have had a great response so far and we hope everyone will help contribute if able. Thanks to everyone who has already supported and to all the amazing sponsors for getting this project off to to a great start. See the link below for more details and/or to donate.
Now back to blog-biz! The last week+ has been BUSY.
Friday the 13th Brax was asked to come be part of Dr. Moertel’s award presentation. Hyundai awarded the U of M $300K for continued research – very AWESOME! Brax sat through the presentation and then got to leave her print on the car.
Saturday Bry came to the hospital to visit and the girls watched some Gopher’s Football and hung out.
Last Wednesday was a really big day. The Women’s Gymnastic team came in a couple of waves to check on Brax and see how things are going. It was our first time meeting Coach Hansen. She has been great about keeping in touch and checking on Brax.
Then not too long after, Coach Fleck, Heather and the football team came in to say hi. Coach Fleck & Heather have been great to Brax. Coach and Brax have a special little connection and it’s pretty cool.
The rest of the week and weekend were really good. Brax’s floor 5 buddy, Megan, came back to visit Brax. She’s doing great and it was nice catching up with their crew. The girls hung out in the Endzone and it was a nice distraction for Brax. Sunday Bry came back and the girls watched the Vikes game and some gymnastics. Congrats to Grace on making the 2019 World Team!!
Yesterday, Brax spent a good chunk of time designing the bingo cards for the game she will be co-hosting this week in the Zucker Studio with Shannon from Child Family Life. She had a lot of fun working on this project.
Today was another good day. Counts are still low but should start rebounding anytime now. The general rule is they want your ANC to be at .5 before they discharge and we are currently a goose egg (and have been for some time). We know the drill now, but it doesn’t make it any easier waiting. But on the plus side, Brax feels really good and she’s keeping busy. Today was Build-A-Bear in the lobby so she biked down to do that this morning.
And finally, this coming Monday is Chad Greenway’s big event, Celebrity Waiter Night, where a bunch of the Vikings players bartend and sign autographs and then a big dinner and auction all to support Chad & Jenni’s Lead the Way Foundation. We have done this the last couple of years just as a fun event to do, but this year will be extra special as they have asked to feature Brax’s story. It’s funny how this has went full circle with us going as supporters and now we are the ones they are helping support.
As always, thanks to everyone for the continued support and prayers! It’s been a long 8 months, but we are taking it one day at a time and we are getting really close to getting things back to our new normal – back to school, practice, activities, etc – with the treatments worked into the mix. THANK YOU!
Brax finished the 2nd to last treatment of Delayed Intesification on Tuesday. She is in the home stretch now in regards to intense treatment and is looking forward to wrapping this phase. She is still in the hospital due to low counts, but once those are up we can boogie.
Until then, the hospital does a great job of keeping the kids engaged (if they choose) and this week has been no exception. Last night Olive Garden had one of their regular family/patient dinners in the lobby, today they tape the PJ Fleck Show onsite (very fun) and later this week Brax was asked to sit in on a speech to be given by Dr. Moertel on some funding he has received.
Overall, she’s feeling really good, a bit tired after the big treatment yesterday, but otherwise doing great considering she’s been hit for the last 7 1/2 months with weekly chemo (yuck!).
We now have her schedule for the next round of treatment which will start later this month or early October. The next phase is called Interim Maintenance II and is the final phase before Maintenance (the last phase). Treatments will go from weekly to roughly every 10 days and should be much easier and less intense. She should be able to get back to doing most things during IM2, besides school, as counts will be a bit compromised. We are all very excited to get back to feeling REALLY good!
Lastly, being 9/11, a HUGE thank you to all those who serve our country. This day will never be forgotten, nor will the sacrifices our service members make every day. THANK YOU!
A lot has happened since our last post and mostly all very good. The only real bummer, but expected at some point during this intense phase, was Brax getting a slight fever on Friday night landing her a hospital stay. She feels fine and is doing very well, but her counts are extremely low causing a neutropenic fever. We won’t get the OK to leave until counts recover and based on where we are in treatment it could be a few weeks potentially. More on that to come….
We will catch up since last post.
On Thursday, August 29th, Brax was asked by Chad Greenway’s team if she would do a small video and be featured during Chad & Jenni’s big annual fundraiser, Celebrity Waiter Night. We did the filming at the U in the Zucker Broadcast Studio and it was a very neat experience. Chad has a locker at U that supplies all kinds of electronics for kids (iPads, Xbox 360s, Playstations, DVD players, etc.) He’s doing a lot of great work in the community and from the sounds of things is looking to make a big donation to the U this year….we are hopeful!
After the filming the girls wanted to go check out the Love Your Mellon party. LYM was on campus that day with free hats and ice cream – WIN-WIN!!
Friday, August 30th, we were at UNRL to have lunch with the team. As mentioned before, we are partnering with them for all of Brax’s clothing for her soon to be launched fund to help raise money to support projects at the U.
We had a quiet Labor Day weekend and stayed close to home. It was nice having the whole family together and feeling really good overall.
On Tuesday September 3rd, we headed back for another round of chemo. At this appointment her counts had started to drop quite significantly and we knew that either transfusions or a hospital stay could be very likely in the coming days/week.
The next few days were fine. Brax was feeling good and energy was good overall, but her temp started to slowly climb on Thursday night and continued to climb over the next day. By 6PM on Friday, it finally reached the point that we are required to come in (100.4). We headed in and were admitted to the Emergency Department around 8PM. Her temp was now at 101.0. Again, this is very common during this phase of treatment, but the possibility of infection is always the biggest concern and the reason for such a swift response. In Brax’s case, and every fever thus far, they have been due to low counts and NOT infection, which is huge and much easier to control.
So as of tonight, we are camped out indefinitely at the hospital until counts can recover. With two rounds of chemo left during this phase of Delayed Intensification, we are preparing for an extended stay. Thankfully Brax feels good and is in very good spirits.
The end is getting very close and we are all looking forward to getting back to “normal” or our “new normal”.
Thank you again to everyone for all the continued prayers and support. We have said countless times throughout this process we are so blessed to be surrounded by such wonderful people – family, friends, teammates, teachers and medical team. Every one of you in some way or another has helped make an extremely difficult situation very manageable for all of Team Brax! Please continue to keep Brax in your prayers. It’s been a long a long 7 months, but we are getting close.
Also, as we have mentioned in some previous posts, Brax will be launching her TB1 Fund this month. The fund will help to support programs at the University of Minnesota Masonic Children’s Hospital that Brax is passionate about. She has spent a lot of time here and wants to help give back. As the launch gets closer we will be reaching out to everyone for support. And what better time to launch than during Childhood Cancer Awareness month!
Brax has been doing really well after getting off to slow start in Delayed Intensification. The last couple weeks she has felt pretty good and not as tired. She finished the 1st have of DI on August 20th and made counts this past Tuesday and was able to jump right into the 2nd half of DI. She has 4 more weeks of intense chemo and then she can put that behind her. It will be 8 months of intensive chemo once this wraps up in September…..what a trooper!
Rewind to last week now and catch up…..
Brax and Bry and the TCT gymnasts got to get out of the gym and have ice cream at one of their teammate’s family’s ice cream shop. Always nice to get out and see people as there has been a lot of isolation the last 7 months.
Last Wednesday Brax had a really cool opportunity with Casey O’Brien and ESPN. Casey, another U of M patient and Gopher Football player, is doing a segment for ESPN about his story and he asked us if Brax would be involved for his shoot in the hospital. She was thrilled and gladly accepted.
Tomorrow (Thursday), Brax also has another big opportunity. She was asked by Chad Greenway’s Lead the Way Foundation to be the featured person for his big Celebrity Waiter Night Fundraiser in September. They will be filming that tomorrow.
And then, as we had mentioned in a previous post. We will be starting a fund for Brax. She wants to continue to be involved and stay involved in helping others in her situation. We are partnering with the U of M Foundation and will be launching her website later this month. We are hoping to do big things for Masonic and the programs Brax is passionate about (Child Family Life, Kyle Rudolph’s End Zone and Jason Zucker’s Broadcast Studio) We will be posting more info once the fund kicks off, but we will be looking for everyone and anyone who is able to help make this a success and do BIG things.