Give to the Max 2023 is Thursday, Nov 16th! This is the single biggest donation day of the year for our foundation and this year Carousel Motor Group has stepped up again with a huge $20K matching donation. Please consider making a gift of any amount – $5, $20, $100. Every dollar donated with be matched dollar for dollar up to $20K!!
As an added bonus, all donations of $5 and above will receive (1) entry for every $5 into a drawing for 1 of 2 Brax Packs (swag bundle picked out by Brax for you, which also include either a signed PJ Fleck Book or signed Jason Zucker Give16 x TB1F Hat!)
In addition, all donations of $25 automatically get a TB1F Good Vibes Coozey and all donations of $50 or more automatically get a TB1F Good Vibes T-shirt (if desired).
Help us help others this November and DOUBLE your impact.
Dude Perfect, 4th of July, Twins Game, CMG Toy Drop, PT, Team One Four, Summer Sounds, Barbie, 3MOpen, Golf, Helmet Reveal & RTB BBQ, Spirit of the Flame, Gophers Football, 8th Grade, Will Francis, September Go Gold.
How can it already be back to school??? July went by lightening fast, but Brax had a really great month and it almost felt “normal”. We started out with a bang and went to Dude Perfect in St. Paul. We were joined by a great group of friends and family and all the kids had a blast.
Our 4th of July was pretty low key and was spent grilling and hanging out with family.
Our family attended the MN Twins game with our good friends the Flecks & Wudels. It was so great to get the gang together and enjoy a beautiful summer night at the ballpark.
Brax officially ended the second round of the immunotherapy on July 11th. This was also the same day that the toys from CMG x TB1F toy drive were delivered to the hospital. It was a huge success with hundreds of toys being delivered. Brax was so thankful to have her treatment break fall during summer vacation. She was excited to spend time with friends, family, and enjoy swimming.
Brax was happy to attend a party in honor of her good friend Casey O’Brien and his Team One Four Fund. He has raised over one million dollars to enhance & upgrade the infusion center in the Journey Clinic. This is where Brax goes for all of her outpatient care – chemo, transfusions, labs, exams, etc. Congrats Casey!
Brax & Bry have been doing lots of PT & OT this summer!
Summer Sounds was July 15th and Brax was so excited that the concert fell during her treatment break! Brax was able to use her connections at Gopher football to give Michael Ray and friends a tour of the football practice facility and Huntington Bank Stadium. The girls thought it was pretty cool to cruise around the cities with MR. Finally, it was time for the big concert – the weather was perfect, no mosquitoes, amazing music, top notch food & bev, and everyone had a blast! TB1Fund and Brown Boys raised over $339,000! Huge thank you to our sponsors, partners, and guests!
We ended July with a week at TPC in Blaine for the 3M Open. Brax has been a part of the tournament since it started in 2019 and it is always a very fun week!
Continuation #2 started as anticipated with a tough week of steroids but the next few weeks of treatment went well. Gopher football asked if Brax and her 2 time cancer survivor & heart transplant warrior friend Megan to unveil one of the new helmets for the upcoming football season. The last time Brax was in the auditorium in front of the entire football team was December 2019 when she gave a pre Outback Bowl speech about her cancer journey. She had just turned 10 when she gave that speech and it’s amazing how her relationship has grown over the years and it’s crazy to think she will be 14 next month. After the unveiling we attended the annual Row The Boat BBQ – It is always so much fun to go to see the coaches and players interacting with all sorts of kids & families that are dealing with or have dealt with medical issues.
Brax received the unexpected news from USA Gymnastics that she was the 2023 recipient of the Robert Miller Spirit of the Flame Award. Our family was very hopeful that we would be able to make the trip to San Jose, California and attend US Championships and the Hall of Fame dinner where Brax was set to receive the award. Unfortunately, her cancer treatment had other plans and her platelets were too low for her to make the trip. We were thankful that she was able to stay fever free and out of the hospital and we enjoyed cheering on TCT from home and seeing pictures from Sarah & Steve accepting it in her honor.
Brax is in 8th grade and will be doing online homebound schooling this year and Brylee is in 6th grade. Brax was only in school for a week before a fever landed her in the hospital. The same thing happened during the end of Continuation #1 so we were not really surprised even though we were hoping to stay outpatient longer. During this stay Brax was able to get to know a new cancer buddy Will. He has the same cancer as Brax and unfortunately relapsed as well. With them both being inpatient at the same time they were able to get to know each other better and discover so many similarities in life and in their cancer journeys. Brax was thrilled to be outpatient and see Will represent Masonic and throw out the first pitch when the MN Twins celebrated Cancer Awareness Month at the end of September. Brax really looks up to Will and is amazed how he continues his passion of hockey even through 2x Leukemia. She cannot wait for his return to the ice and to watch him skate for UMD again. WILLPower!
Brax has been able to attend all the home Gopher football games so far this season. It is a goal for her to make them all and for the team to keep the Axe on her birthday as the grand finale at home!
Childhood Cancer Awareness month ended with TB1F hosting the MN Champions Tour at the hospital at the end of September. The tour pays tribute to MN Olympians and was a fun filled afternoon for patients and families. UNRL joined the party and gave away clothing to patients – how cool to be able to shop UNRL clothing during your hospital stay or clinic appointment. We also had face painting, Johnny Pops, Red Savoy Pizza, Maui Wowi Smoothies, and awesome music from GenNOW and DJ Mad Mardigan. Thank you Cub & MN Champions for helping to brighten days for our patients & families during the month we Go Gold!
Up next for Brax is starting the final round of Blin (immunotherapy). She will be inpatient for 4 days to start and will continue the rest of the 28 day infusion outpatient. After Blin she will get a week off of treatment and will start Maintenance Therapy after and until she officially finishes her treatment on November 15, 2024. We are looking forward to having the most intensive part of treatment behind us and continuing to move forward.
Friday, May 12th Brax made counts and was able to start the final phase of the chemo block Continuation #1. It was a big day of treatment consisting of an LP w/chemo, 2 – IV chemos, chemo pills, and 4 days of IV chemo pushes. Brax had been feeling really good for the most part up until this treatment and it really kicked her butt. Brax was bummed she was not able to attend WineFest the next night since TB1F & our family were receiving The Ambassador Award from M Health Fairview Masonic Children’s Hospital. I guess it wasn’t meant to be since that very same night she spiked a fever and needed to go to the ER. We were all shocked how fast her counts dropped and she needed to be admitted. We knew this would probably happen at some point during this tough phase but it surprised us how quickly it happened.
During what ended up being a 17 day hospital stay Brax felt pretty good once she got through the first few days of fevers. She was able to enjoy her first “Music Monday”. This is a program that is presented by TB1F and features our friends from GenNow. DJ Mad Mardigan was in the Zucker Family Suite & Broadcast Studio to share is DJ talents. Patients are able to join in the studio or watch from their rooms. We were able to learn some DJ basics and enjoy a dance party where you can request songs and even mash them up. It was so much fun and Brax even wanted to go down to the studio after the broadcast. Bry was able to come visit Brax and they were able to take advantage of the EndZone and all it has to offer. This was Brax’s first time visiting that space since her relapse and the girls had a blast doing crafts and playing sports (not too different from the time they spend together while at home) We are so thankful for the amenities and all the hospital has to offer to help patients have some fun while inpatient. Brax was discharged on Memorial Day and we were very thankful to be home and to grill and hangout as a family.
The girls wrapped the school year and Brylee was cleared to return to gymnastics just in time for summer training. We had our 3rd Annual Putt 4 Patients on Saturday, June 10th. This year the event took place at Scheels in Eden Prairie and it was a really fun day. Brax was very thankful she was able to attend and excited to see a great turnout of hospital families, friends, family, TB1F supporters, and Scheels shoppers. Check out the link below for a video recap from the day.
On Monday, June 12 Brax started the 2nd round of Blin – the new immunotherapy drug. It was a 4 day inpatient stay so it seemed pretty quick compared to most of our stays at Masonic. She developed some flulike symptoms but that is very common when starting the drug.
Sunday, June 25th we hosted our 2nd TB1F Sibling Day at Top Golf! This event filled fast and we were excited to provide an opportunity for families to get together and have some fun.
Some other things Brax has been up to since we last posted include: PT, getting outside, seeing friends, family events (Max’s birthday, Father’s Day, Jim & Allie wedding shower) Pay it Forward Golf Tournament, Hailey’s Grad Party, seeing a few movies in the theater, and all the excitement around the announcement of the 2024 Olympic Trials for GyMNastics taking place in MN.
We have one more really big event coming up this July (less than 3 weeks). We have settled on (3) fundraising events per year and they are all unique in their own way. But this July 15th we are bringing back our 3rd and final event of 2023, Summer Sounds, and partnering with Brown Boys Benefit to bring multi platinum recording artist Michael Ray to town. We are an official tour stop on his 2023 national tour and he will be supported by locally born, Nashville based country artist Alannah McCready. We are excited to bring an act of this caliber to a relatively intimate venue. If you are interested in coming to the show or would like to help volunteer, please see the link below. We do need to fill some volunteer spots still. If you already have your tickets, share with your friends and family. We want to #FillTheField on Saturday, July 15th.
Brax started the next phase of treatment called Continuation 1. This phase is a mix of several types of chemo – 10 to be exact. The first week was tough due to steroids more than the IV, IT, and oral chemos. Steroids used in high doses act like a chemo in leukemia treatment. Unfortunately steroids are a big part of Brax’s treatment plan. After the first 10 days Brax started to feel pretty good and had a couple easier weeks. She was able to attend birthday parties for her baby cousins Maisy & Siena who both turned one. Brax & Bry also wanted to host Easter brunch. It was nice for Easter to feel pretty normal with us attending church together as a family, enjoying brunch, and watching the Masters. Her counts were good for the most part so she was able to see some friends, go up north for a few days, and just be a teenager for a bit.
April 10th was National Siblings Day and TB1F wanted to celebrate siblings and the important role they play during treatment. We partnered with our friends at Red’s Savoy Pizza and treated patients and families to dinner. Speaking of siblings, for those of you who may not know, Bry had a fall on bars at gymnastics and dislocated & fractured her right elbow and also had a less severe fracture to her left. She was bummed to have to miss her State meet, but had a blast cheering her Level 7 TCT team to a State Championship. Elbows are tricky and it is a long recovery process, but she is doing what she can to get back to doing what she loves.
Brax was excited to go to Top Golf for the first time with Grandma & Grandpa. She has been wanting to go for awhile and one of the positive things about going to school online at home is the flexible schedule. She had a blast and is looking forward to spending more time golfing this summer. Brax continues to go to physical therapy and has made a lot of progress over the past couple months.
Friday, April 28th was set to be a big day – Brax was hoping to start the final (and toughest) phase of this Continuation block of treatment and it was the the same day as the 3rd Annual Champion’s Cup. Brax did not make counts (ANC & Platelets needs to meet a certain criteria in order to start the next round of treatment) and she was not able to attend the event in person this year due to being immune compromised. The event was a huge success with TB1F raising over $410,000 for the event and over $1.1Million since Brax created her foundation in September 2019. Huge thank you to all of our sponsors, partners, and donors that continue to support Brax and TB1F.
Since Brax had her treatment delayed she was feeling good enough to attend the Scheels Eden Prairie Family Fun Day. This event made it possible for Scheels to donate $5,000 to TB1F to help brighten the days of patients and families at M Health Fairview Masonic Children’s Hospital. Scheels in Eden Prairie will be the location for our 3rd Annual Putt 4 Patients presented by BMW of Minnetonka on Saturday, June 10th, 2023. Tickets and more info are available at Putt 4 Patients Info This event is whole-family friendly afternoon.
Finally, we and Brown Boys Benefit had the pleasure of meeting Michael Ray who will be this year’s headliner at our 2nd Summer Sounds Charity Music Festival. The concert will be Saturday, July 15th at Willow Tree Winery in Ham Lake and you won’t want to miss it! Tickets on-sale now Summer Sounds Info These are selling fast due to Michael adding our stop to his 2023 National Tour stop. Alannah McCready is back to open the show again this year too!
More importantly than anything we do is the health of our kids and we’d ask that you continue to keep Brax in your prayers as well as her buddies, especially Megan and Casey right now. We will update again in June!
Brax was finally discharged after a 26 day inpatient stay for Block 2 of treatment. It felt great to be home and sleep in her own bed and have a mini break before starting the next cycle of treatment. During the break Brax & Bry went to UNRL for a photo shoot for the UNRL x BRAX collection. Both girls had a blast and we were excited with how the gear turned out. Brax is honored to be named an official UNRL Athlete and represent the clothing brand, not to mention they are great friends and people.
On Friday, February 10th Brax was once again admitted to start the first cycle of Blinatumomab (aka Blin). This is the new targeted immunotherapy drug that we are hoping will be the cure for Brax this time around. The med is programmed to hunt out leukemia cells that may be hiding and go undetected and lead to another relapse. The best thing about this med is that it only kills the bad cells, unlike chemo that kills all cells. This means Brax should feel better and have better blood counts during this cycle of treatment. That ultimately leads to her having more energy, getting to see friends & family, and getting to get out into the world more. Typically kids who are MRD negative at the end of the first month do better with this med and thankfully that has been the case for Brax. You need to be inpatient for 72 hours the first time you start the med since there are several side effects that need to be monitored. Brax has not experienced any side effects so far and is doing great. The only catch is that a Blin cycle is 28 days long and she is having a continuous infusion the entire time. This means she is accessed (port needle in her chest and hooked up to the med) the entire time. She was discharged after 4 days inpatient and we have been working with Fairview Home Infusion for her outpatient care. She has the new IV med bag delivered on Tuesday night and a home healthcare nurse comes on Wednesdays to swap things out. She is in charge of changing the batteries on her pump every 48 hours to make sure there are no interruptions to her med. Brax is in clinic on Fridays to get labs, meet with her team, and change her port needle. She had a lumbar puncture with chemo to start week #2 of the Blin and meet with her team in sedation. They are very pleased with how things are going so far. Brax has been able to see a few friends, go to TCT a few times, cheer on her sister and other teammates at Twisted Moose & Northern Lights, go out to eat, and start outpatient physical therapy. Brax finished Blin Cycle #1 on March 10th and will get a one week break from treatment before she starts the next phase, which will once again be different types of chemotherapy.
Shout out to Twin City Twisters – Brax & Bry’s gymnastics club. Brax was an honorary team member at Winter Cup and the TCT Elites dedicated the meet to her. Congrats on an incredible start to the Elite season. TCT hosted Northern Lights and Brax’s teammates competed in a special Team Brax leo to show their amazing support. Brax was able to join Brylee/coaches/teammates on the floor for this meet and it was special for our entire family. We could not be more proud of our TCT family and all of the support they have given Brax, Bry, our family, and TB1Fund.
Thanks again to everyone to continues to check-in on Brax and support her in numerous ways through this relapse.
Also, please keep an eye our for upcoming TB1F events. Date are now officially set and there is some fun stuff coming.
Friday, April 28 – 3rd Annual TB1F Champions Cup (Sold Out)
Saturday, June 10 – 3rd Annual TB1F Putt4Patients by BMW of Minnetonka. This year we will hold this event at Scheels in Eden Prairie and tickets go on sale April 8th. Family Friendly Event!
Saturday, July 15 – 2nd Annual Summer Sounds Concert. We are back this year with Alannah McCready returning, along with headliner Michael Ray! Michael’s team has name our stop an official 2023 National Tour stop which has added some wrinkles, but we are so excited to welcome Michael to town this July. Tickets on sale now! For more info see link below.
Brax continued to move forward with Block 2 of chemotherapy treatment at the end of December. Block 2 is another intense block of treatment following her 30 day inpatient stay for Block 1 Induction. Due to no evidence of disease after her bone marrow biopsies her team decided to continue along the chemo path for Block 2. We were thankful that Part 1 of Block 2 was outpatient since that allowed Brax to be home for Christmas and a majority of Brylee’s holiday break.
On December 30th Brax started Part 2 of Block 2 and this phase included a sedated lumbar puncture, 36 hours of methotrexate, and another Peg all to be done inpatient. She needed to stay inpatient until her body cleared the methotrexate. Good news is that she cleared the chemo very quickly but bad news is she had a very rare reaction to the chemo that created chemical like burns on her hands & feet. It was extremely red, swollen, and painful. Due to her blood counts being good they let us go home with an antibiotic and a huge tub of Aquaphor to recover. It was painful for her to walk and use her hands, but she was thankful to be at home. She also developed mouth sores, which are a common side effect, that delayed her from starting part 3 of treatment until they healed.
On Tuesday, January 10th she was admitted for Block 2 Part 3 which is all inpatient. She had 10 chemos in 5 days (5 cytoxan & 5 etoposide) which was very intense and definitely one of the tougher treatments she has experienced. The doctors want to keep her inpatient until her counts bottom out and start to recover before she can go home. Since this is her second time going through therapy she is even more at risk since the body has already been through 2.5 years of chemo and radiation. Brax is exhausted & nauseas but hanging in there – we will be happy to put this block behind us and move on to targeted therapy for her next round of treatment. We finally received the results of the genetic testing from her leukemia. Our team has decided that between the results of her bone marrow tests, her genetic testing, and consulting with a few other experts in the field that Brax will go down a 2 year chemotherapy path. The difference this time will be the introduction to a new targeted immunotherapy drug Blinatumomab (aka Blin). This drug hunts out the leukemia cells that may be hiding and going undetected. Our team is hopeful that the combo of chemo and Blin will be the cure. We would still have the option to use CAR T or Bone Marrow Transplant if needed in the future. Hopefully we won’t need these options but always nice to have options just in case. Brax received a blood transfusion and her first IVIG infusion after her counts bottomed out about 10 days after starting chemo. Now we are just waiting for her counts to recover before being discharged. We are looking forward to having Block 1 & Block 2 behind us and moving on the Blin cylcle 1. She will start this cycle inpatient for a few days but the rest should hopefully be outpatient and she should feel much better!
And for anyone looking to get out and support TB1 Fund, our 3rd Annual TB1F Champion’s Cup presented by Cub is back this April. If you’ve been before, you know what to expect (some new additions this year though). If you have never been, it’s fun night and you wont be disappointed….promise! One BIG addition this year, PA will be calling the (4) races…..he’s is going to put his spin on things….buckle up!
To learn more, see past year’s videos or purchase tickets visit the link below.
The final week of re-induction was very low key and that is exactly what you want when you are in the hospital. “Boring is Good” is a quote one of the attending oncologists says and it is very true. Brax had her last chemo of this block and all went well.
They continued to keep her on IV antibiotics to help keep her from developing an infection with her blood counts being so low. She felt pretty good for the most part and was able to get in several walks around Unit 5 and a couple sessions of PT. Trimester #2 started at school and Brax started up a few of her classes after taking the first few weeks of treatment off to focus on her health. After the 4 week treatment plan for Block 1 was complete it was time for her big day of testing. All went well with her bone marrow biopsy and diagnostic lumbar puncture. The team in the hospital and her personal team both thought it was safe for her to go home and wait for results. After 30 days of being inpatient Brax was so excited to go home and sleep in her own bed and see her puppies.
She enjoyed a few days at home before going into clinic on Friday for labs/exam. The results from her tests on Tuesday were all negative for leukemia, but with having so few white blood cells present our team decided they wanted to repeat the bone marrow biopsy on 12/23 so she would have more cells available to give the most accurate results. We also learned that Brax’s leukemia may have a genetic factor that could change the course of her treatment. The bone marrow with cancer that was originally collected on November 9th was sent away for special testing. Once the genetic results and the results from the upcoming biopsy are back our team will create a treatment plan for Brax. We are hopeful to have results back around the end of the month and move forward with a plan in early January. We had a very nice Christmas and we’re all very thankful that we could be home and together. The day after Christmas we received the great news that the second bone marrow biopsy confirmed that Brax was negative for leukemia. We are still waiting on the genetic results since they will play a major role in her treatment plan moving forward, but to have her in remission after the first month is a big WIN. We will be going inpatient once again on 12/30 and continuing moving through Block 2 of the chemo path for now. We will continue to wait patiently while Brax’s team gathers all the information they can before deciding on the best plan to cure her for good. Hoping everyone had a Merry Christmas wishing everyone a Happy New Year! We are happy (and Thankful) to be moving into 2023 cancer free, albeit the treatment path uncertain, we have the best team around.
Week #3 began with starting a 5 day steroid pulse and IV chemo. She had a great session of PT before her treatment and she said it felt good to get in a workout even though it was challenging.
Wednesday was the last day for TB1F’s month long “Give to the Brax” campaign. With Carousel Motor Group matching funds up to $25,000 she was able to raise $43, 527! Thanks to everyone who made donations, big or small, during the month of November – every dollar counts! A HUGE thank you to CMG for their generous support!
Thursday she had her second IV chemo of the week and one of her least favorites overall. She did well, but was extremely tired for the remainder of the day.
Friday she still wasn’t feeling very good but agreed to do a quick interview with Fox 9 news on “My Cause My Cleats”. Minnesota native and former Gopher Blake Cashman decided to rep Brax & TB1Fund this year. Brax was so honored and excited about being a part of this big week of giving back in the NFL. “My Cause My Cleats” is a way for NFL players to pick a cause that is important to them and represent the organization on custom designed cleats. Thanks so much Blake for choosing Brax & TB1F! Check out the segment on FOX 9 below.
Saturday she was still tired but it was her last day of steroids for block 1 of treatment. She forced herself to get a session of PT in and of course felt better afterwards. Grandma Judy took over so we could go watch Brylee’s first gymnastics meet of the season – Peppermint Twist proudly hosted by TCT. Brax enjoyed looking up scores and receiving videos of different routines. Bry did great for her first full Level 7 meet with bars being her favorite event of the meet and her team took home 1st place! Brax was so proud of her sister and all of her teammates for doing so well.
Sunday was a pretty low key day of watching football and the “My Cause My Cleats” campaign.
Monday was the last day of week 3 and her hair is finally starting to fall out, but she still has a majority of it. It is hard to believe that we have been here for 3 weeks – it seems longer & shorter at the same time. Her final week of treatment in block 1 has only 1 chemo and then we wait for December 13th. She will resume school this week and try to get in a few more sessions of PT. We are hopeful that we will be home for Christmas, but also know that you never know what will happen in the world of cancer treatment.
Thanks for everyone’s continued prayers and support! We have a long road ahead of us again, but we are confident that 2X will be the last X.
If you have time, check out some of the well wishes from NCAA Gymnastics programs around the country on our Fun Stuff page – thank you everyone!!
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!