A lot has happened since we last posted, with the biggest event being the Coronavirus and the challenges associated with it. First, and most importantly, we want to extend a huge THANK YOU to all of our incredible doctors, nurses, and staff across the country for everything you do. Second, we want to extend our heartfelt sympathy to all the families affected by this pandemic, both from a health and financial perspective.
In terms of where we are with things, we will catch you up from where we left off.
If you don’t follow Brax on social media, based on our last posting everything was looking good, we were in the ER for a fever, but counts were good and we went home. The next day however, Sunday, February 23rd the fever came back and we were admitted. That week was shaping up to be BIG & FUN, so it was a bummer. She had her 2nd Dunkin’ Donut Ever Give Up day planned for Tuesday. We still held the event, but instead of hosting, Brax was in-patient. On Wednesday, she was invited to the Gopher Men’s basketball game to help introduce the U’s new therapy dog, Rocket, which she was super excited for…another bummer. And the the icing on the cake, quite literally…..she was supposed to spend Thursday afternoon with last season’s Kid’s Baking Champion Winner, Paige getting some lessons. One thing we have learned through this whole cancer journey is that it’s very hard to make plans more than one day in advance.
Brax was in the hospital for over a week and of all of our stays, besides initial diagnosis over a year ago, Brax just didn’t have any energy and was very fatigued, which is unlike her. Being at an “easier” point in therapy, or so we thought, things were not adding up. We met with her docs and nurse practitioner and all of her counts looked good, low but good, so their thoughts were it was partly due to the dose of her maintenance chemo in addition to delayed effects of radiation. We were discharged on March 3rd and things slowly started to improve. We got some more answers at our next follow-up, which started to explain why Brax was feeling so crappy. They ran a test while she was inpatient to see how she was metabolizing the current dose of chemo and it turns out the initial dosing was simply too much. After talking with Lexi, they start everyone around the same level and as you progress through maintenance some kids end up at 150% of initial dosing, while others end up at 25%. It has no impact on effectiveness of treatment, but they want to keep ‘your’ specific numbers at certain levels. Moving forward, Brax will have her dosing reduced and we will move up from there, with the hope of avoiding any more setbacks during maintenance. Again, nothing is guaranteed, but we all agreed this was the best plan of action moving forward.
Not too long after being home, Brax bounced back and was back to her “old” normal. She had her spunk and attitude back! Nothing better than seeing your kid feeling good. The things we so often take for granted are so appreciated these days.
This past Tuesday, Brax was back for treatment. It had been 3 months since her last LP….nice break. Everything went well with her LP and after recovery she headed up to the Journey Clinic for more IV chemo and pentamidine. She had been taking bactrim pills, which she preferred, but because they tend to lower your counts they asked her to switch to pentamidine (shown below). She’s not a fan, but better than the alternative.
And a small bright spot amidst all the ugly in the world right now, Dave Puente, a local photographer who we have gotten to know throughout this process and who is also donating his skills at our upcoming event, wanted to come out to family’s homes and photograph them during this pandemic. It was a quick 5 minute shoot that captured a brief moment during a very challenging time. This small (or what was intended to be small) project has now blown up and Dave has opened this up on his social media for other families to get involved. Check it out if located in the metro – instagram @davepuente Thanks Dave!
And just this past Friday, we (TB1Fund), received a call from the U of M Foundation, asking if Brax would be willing to help support Child Family Life and critical funding needed during this time at the hospital. She said “YES!”
Because of the current restrictions in place to safeguard patient’s health during this current COVID-19 pandemic, areas such as Kyle Rudolph’s Endzone, the Zucker Family Suite & Broadcast Studio, and many other areas generally used for recreation have all been closed. In addition, many items generally made avail for patient/family use are now in short supply as they are not being re-used. This appeal for funding is very intentional and very directed. Funding will make an immediate impact! See the statement below from Child Family Life.
Child Life Specialists who are working to meet the mental, emotional, and developmental needs of our patients and families, say funding for additional toys, games, books, and comfort items is critical at this time. For example, two-player board games and educational books are important as our families are struggling with isolation while practicing social-distancing in the hospital setting.
We understand these are challenging times for EVERY family in one way or another, but if you are able to help support the immediate needs, please kindly consider it. We are looking for 1,000 people to donate $5/ea. Share this with family and friends and lets make a difference for the kids stuck at the hospital.
You can make a 100% Tax Deductible donation at www.TB1Fund.org Thanks to everyone who has donated already and anyone that is considering it. Help brighten a day!
Finally, in regards to our big event planned for this spring, the TB1F Champions Cup, we are officially postponing this event until later in the year. Our main focus is our guests health and we want to make sure we are keeping everyone safe and following CDC guidelines. We are working on coordinating dates with everyone involved and are currently looking at July/August. Tickets are on sale and we have had a great response to the event. There are currently only (2) general tickets left and 5 horses left. It’s shaping up to be an exciting evening and a very “feel good” event. We have had a lot of people step up to make this event very special. Thanks to all of them! You know who you are!
For more info or to purchase tickets, please check out the link below.
TB1F Champions Cup Info/Tickets
Thanks again to everyone for supporting Brax in this cancer journey. And we continue to ask for prayers, not only for Brax, but also for her good friends she has met along the way who are all at varying points of treatment – Bella, Casey, Megan and Jake!
Stay Safe, Stay Healthy!