Week 2 was less intense than week 1 and the timing was great with it being Thanksgiving and Brax’s birthday. It was a busy week that started off with a port needle change, physical therapy, a pedicure.
Tuesday was a very big day that started with a sedated lumbar puncture with chemo and IV chemo in her room that afternoon. We also had a consultation with the Bone Marrow Transplant team. We won’t know her treatment plan until after the results of her bone marrow biopsy on December 13th, but we want to be prepared for whatever path Brax will go on. Having a BMT would be the most aggressive treatment plan, but we did receive the amazing news that if she needs a BMT her little sister Brylee is a full match! Hopefully Brax will not need a BMT, but it is good to know that if she ever does that Brylee is the best chance of her having a successful transplant. The day concluded with a visit from Minnesota Wild players Kirill Kaprizov and Mats Zuccarello. One of the best things about being a Masonic patient are all the awesome athlete visits.
Wednesday she had a few of her good friends visit and drop off gifts for her birthday. It was great for Brax to get a chance to visit with some friends and we are thankful that visitors are allowed at the hospital.
Thursday was Thanksgiving and Brax had more visitors, had Thanksgiving dinner brought in, Facetime with her little cousins, and watched football all day.
Friday she woke up a teenager! We had a super fun weekend planned to go to Wisconsin Dells and the Gopher v. Badger game but we will have to do that another time. Next year the Axe game is home and on her actual birthday so we are already looking forward to that. Brax did spike a fever on her birthday and that is one of the reasons why they keep you inpatient during the first month so that they can get you IV antibiotics right away and prevent any kind of infection. She had a bunch of visitors and received some amazing gifts and treats.
Saturday she need a blood transfusion, but was feeling good for a long visit with close friends. We were thankful to have our family of 4 all together to watch the U of M game and cheer on the Gophers to a Back2Back Axe wins! So proud of Coach Fleck, Heather, and the entire Gopher Football organization.
Sunday she needed platelets again, but her hemoglobin rebounded nicely after her blood transfusion on Saturday. She cleaned and organized her room and was able to get out of her room for a couple walks.
Monday she was so excited to have Paul Bunyan’s Axe for the day! Since she is inpatient she wanted to try to share it with other patients and staff. We found out there is only a small percentage of patients that are not on precautions (meaning most are sick with some type of virus they could spread and cannot leave their rooms) or are not receiving critical care. We decided to go to the Zucker Broadcast Studio and record a special segment on the Axe to share with other patients and families at the hospital.
Thank you so much to everyone who helped make Brax’s inpatient 13th birthday special. She could feel the love from the texts, videos, gifts, visits, treats, decorations, etc. Thank You!
Onto week 3. This week will get more intense again, but we are hopeful she responds well and no curveballs. Her hair is slowly starting to come out too, so if you were wondering (and many are, but haven’t wanted to ask until we bring it up), yes, she will lose her hair again…..she’s reminded us all the other day she hasn’t had a hair cut since 2018!
Thanks again for all the continued love, support and prayers. Nothing about this is easy, but all off the support makes it easier!
Brax felt pretty good over the weekend and was able to visit with family & friends before being admitted for 30+ days.
This go around we had some time to prepare for our month long plus hospital stay so we packed up half the house before we left for Masonic on Monday. We checked into peds sedation to have her port placed – a port is an essential part of cancer treatment for chemo, blood draws, transfusions, etc.
We had some delays due to some emergency situations that came up, but Brax handled it very patiently. She said it was ok because other kids needed it more than she did. Her blood counts took a dive over the weekend and she needed a platelet transfusion before her surgery. All went well with her surgery and we arrived to Floor 5 around 8pm. Because we were behind schedule we decided to wait to start chemo until Tuesday so she didn’t have to have chemo in the middle of the night. Tuesday morning Brax woke up to a massive delivery of Panera provided by our great friends at Carousel Motor Group. Her port site was very sore, but otherwise she was feeling pretty good. She started her 5 day cycle of twice daily steroid pulse in the morning and in the afternoon she had (2) IV chemos. One that was very familiar to her from her first round of therapy and one that was new. The new one requires a pre-med to protect her heart and the actual chemo is blue – super blue!
Wednesday was another round of blue IV chemo and she had her first session of inpatient PT. Thursday she had one of her least favorite chemos – PEG. It not only wipes her out but kids can have a reaction to it so that always makes her nervous. She wrapped steroids on Saturday night and gets to reset until Week 2 starts tomorrow/Tuesday.
During her first week she was able to see many of her favorite people who work at the hospital. She was also able to take advantage of the awesome programming on ZTV – made possible by Jason & Carly Zucker and also was able to see her friends Casey & Jace and a few other special visitors.
TB1F collaborated with #Give16 on Thursday night to give patients and families a VIP experience at the Wild v. Penguins game. Jason and Carly even stopped in the suite after the game to take photos & sign autographs. Friday was Fashion Fest and both girls were supposed to model for UNRL, but Brylee had to do it solo this year. She did a great job rocking the runway and Brax was excited to see the fun pics & videos from the evening.
Last, but not least it’s been neat to see the things Brax and TB1F have accomplished over the last few years that are now not only improving other’s quality of stay at the hospital, but also Brax’s (not that we ever wanted to be able to use these ourselves, it is nice having them here).
Thank You again to everyone for the prayers, well wishes, gifts and continue support. We have said it before and will say it again, we are truly thankful for it all!
After a week of recently unexplained fevers, we received word last week that Brax’s cancer has come back. At this time, we know its the same type of Leukemia she had initially [B-Cell ALL]. Also, the one bright spot, if there is one, is that there was no cancer found in her Central Nervous System (CNS), which there was during her initial diagnosis in 2019.
Brax will be admitted to Masonic tomorrow, Monday, November 14th at which time she will have her port placed and start the first round of treatment. We have been told this 1st round will be a 4-week cycle of chemo, which will end with another bone marrow biopsy on December 12th. The results of the bone marrow biopsy will determine the next steps. Ideally we are looking for no sign of disease after these first four weeks, which will put Brax on the chemo path moving forward. This path is the most desired, but it’s another long treatment schedule, stretching nearly 2 years. We have been told these first 30-days will be entirely inpatient as it will be intense treatment.
We will continue to update this site going forward as we know more.
We ask that you would continue to pray for Brax and her remission & recovery.
Summer always goes fast, but this summer went incredibly fast for our family since it was the first one that truly felt back to normal and we had a blast!
We were all honored to attend a party to celebrate all the good work that our friends PJ & Heather Fleck do for the hospital with their Row The Boat Fleck Family Fund. The girls were both asked to speak and did a great job tag teaming a speech that expressed their appreciation of all the great work Heather & PJ do in our community. They were also able to meet Fern – the new RTB therapy dog at the hospital. When Brax was inpatient she would always look forward to furry visitors, so Fern makes an excellent addition to the hospital.
Shout Out to Bry – Track & Field
Bry participated in the USATF Track & Field State and Regional meets this summer. With a busy schedule already for gymnastics she needed to run “unattached” this summer which means she was not on a team. Brylee ended up taking 2nd in the 100m, 4th in long jump, and 7th in the 200m with little to no training at State. She qualified for Regionals in all 3 events but between getting strep throat, vacation in Florida, and overall lack of preparation she decided to just run the 100m. She ended up getting 7th place and that qualified her for Nationals in California. We decided to skip the meet and try for Nationals again next summer when she can prepare more and maybe even join a team.
4th of July
We were able to go to Florida for a few days at the end of June/beginning of July with family. The girls do not get to see their “Up North” cousins very often so they established a new tradition of a trip to Florida with them to get in some quality time over summer break. We all had a blast! A few highlights include: Beach day on Anna Maria, Two Scoops & Menchies, lots of great food, and all the fun in the pool.
The girls wanted to go see Maverick so we told them they needed to do their homework first and watch Top Gun. They both loved it and I think liked Maverick even more! Definitely their favorite movie of the summer and possibly their favorite movie ever! This year for Halloween they did a Top Gun theme.
The Fleck family invited us out to their lake house for a super fun lake day. We all had an absolute blast! Brax couldn’t go in lakes during treatment so we were all so excited to spend time with our friends on the lake. A few highlights include: Tubing on the unicorn, Brax & Bry fishing for the 1st time, the water trampoline, paddleboards/kayaks, super delicious grill dinner, meeting Bella, and a sunset cruise on the lake with ice cream.
Putt 4 Patients
TB1F had our 2nd annual Putt 4 Patients at BMW of Minnetonka again this year. Another hot and successful day of raising money for patients & families at M Health Masonic Children’s hospital.
Brax was asked to be the 3M Open Junior Ambassador again this summer. The girls had a blast filming content and enjoying themselves at the tournament. They were able to meet Jake Owen this year, help host families from the hospital, and were so excited when Tony Finau won.
Twins & Cole Swindell
The girls attended their first concert this summer at Target Field. Cole Swindell was playing a 75 minute set after the Twins game so we thought it would be a great opportunity to watch the Twins and attend a concert. It was a beautiful night and we all had a blast.
We were invited to our friend’s cabin in Lake Delhi, Iowa for quick weekend of fun with some of our gym friends. A few highlights include: “Christmas on the Lake” pontoon ride, tubing, cliff diving, lunch & swimming at Smokey’s. This was the first time Brax crossed into Iowa territory – we are hopeful that her presence in the state will help the Gophers bring home Floyd of Rosedale later this fall! RTB
Brax & Bry were so excited to finally meet Paige – Season 6 winner of Kid’s Baking Championships this summer. Paige and her family have generously donated their time and talent to provide an exciting auction item at our Champion’s Cup event. The girls were able to join this year’s winners at a cupcake decorating session with Paige and her dad. The theme was rainbow and the girls had a blast. Brax started watching KBC during cancer and it was probably her favorite thing to watch with Paige being her favorite baker. Paige and Adam do an excellent job and we are thankful to have their support of TB1F.
US Championships for Women’s Gymnastics was in Tampa this year. 5 girls from TCT were participating so we decided to head down to support them and have a long weekend of fun. Some of the trip highlights include: lots of fun at the pool with the Shook girls, an authentic Italian dinner, mini golf at Popstroke, cheering on team TCT in Tampa.
While attending the RTB BBQ at Athletes Village Brax had the opportunity to join Mo Ibrahim and Tanner Morgan – 2 of her favorite Gopher football players – to raise money for childhood cancer research. The RTB party is an amazing opportunity for hospital families to interact with Gopher football players, coaches, and staff in a very fun environment. Brax and Bry attended this in 2019 and after a few years of covid delays it was great to be back.
Summer Sounds Charity Music Festival
TB1F co-hosted a summer outdoor concert with our good friends Andy & Jenny Brown, whose charity Brown Boys Benefit, supports NICUs. It was a great success and a very fun family friendly event at Willow Tree Vineyard in Ham Lake. Planning has already started for year 2.
Labor Day Weekend
The last weekend of the summer started off with a big Gopher win at home. It was a beautiful evening and we were able to see several good friends. We headed north on Friday to spend some time with family before the crazy busy school year began. The girls had fun at Paul Bunyan Land with cousin Max. The weekend went very fast and before we knew it the girls were off to 7th & 5th grade at Westwood Intermediate and Middle School. We are very thankful for all the fun and memories that we made during the summer of 2022. The school year is off to a great start – Brax is taking all honors classes, doing 20 hours a week of gymnastics, TB1F, football, and time with friends & family.
And to wrap things up, with November being a month of giving, Carousel Motor Group has partnered with TB1F again this year with a matching donation up to $25K. So, if you have any end of year donations to make, please consider TB1F and have your donation doubled. People often think a small donation isn’t going to help, but when UNO cards are one of the most requested items we get from and they cost $5, this is a perfect example of how, literally, ALL donations make an impact.
If you can help, please visit www.TB1Fund.org and all month long donations will be doubled – help us unlock those match dollars! Thank you CMG!
Finally, please continue to pray for our friends dealing with tough diagnoses and treatments. Some recent BIG NEWS, our good friend Megan was able to receive her new heart just recently and is doing phenomenal! We are so happy for her and her family and prayers for the family that lost their family member, but was generous enough to donate to save another life!
Have a great Holiday Season and we will update after the new year! Thank you for the unending support!