Brax sailed thru the 3rd treatment of this phase, which included both an IT treatment and another 24HR IV treatment. There were no set backs and she was able to get out on Friday, June 28th as anticipated. She has her final treatment of this phase starting July 9th and then we will, unfortunately and fortunately, “reboot” the whole process. Fortunate that we can now see the light at the end of the tunnel, but unfortunate that she is going to get knocked down pretty good again. But, with as well as everything has gone and knowing we are only a few months away from being done with the really intense treatments, all of Team Brax is focused on the finish line.
Thanks to everyone for the continued prayers and support throughout this process. Until you actually have to deal with something like this first hand you will never truly know how much it means in so many different ways. Thanks again!
Brax had an awesome day today. She was asked to come and share her story and hit the opening shot for the U of M Champions for Children Celebrity Golf Classic. This fundraiser is hosted by Kyle Rudolph & Jason Zucker. Both of these guys, besides being great hometown athletes, are great contributors to U of M Children’s Hospital and community.
Check out the news clips and photos below from today’s event. Very fun! Thanks again to the U of M, Kyle, Jason and everyone who came out to support the cause today.
Brax heads back in tomorrow morning for the 3rd of 4 treatments in this phase. She is doing incredible right now and says she’s feeling 90-100%. She should have another good 3-4 weeks before Delayed Intensification starts, so we are taking advantage of everything while she is feeling this good.
Brax has had a great week+ while out of the hospital and is feeling awesome! If you ask her how she’s feeling, she has been consistently in the 90%’s and there was one day she said she felt 100%. It’s great to see her doing and feeling so well and we are hopeful the next 3-4 weeks will be more of the same.
This last week she has been doing pretty much everything she would be doing if she were not going through treatment. Playing outside, riding her bike, working out and she has even been to the gym a couple times to work out. Check out the videos below.
Tomorrow Brax has fun day planned. Check back for updates.
Then on Tuesday, she heads back to the hospital for another LP and chemo. She will be in from Tuesday to Friday or Saturday. We are hoping we can get out Friday if they can get everything moving along early enough on Tuesday.
The last couple of weeks have flown by and Brax has been feeling the best she has in months. Her Team said for most kids this 2 month of phase of treatment, even though part of it is spent as in-patient, feel really good, both in and out of the hospital. So far that has been the case. We all experienced what it was like the last 10 days or so to have our “old” Brax back. She’s been doing everything she was used to doing, including getting snappy with Bry and her parents which tells us she is feeling good.
This week was the start of our 2nd of 4 treatments in this phase (Interim Maintenance I). She still has to make counts before each treatment, so we checked in at the clinic for blood work on Tuesday AM.
The big news Tuesday was Brax being able to present her Love Your Mellon Fundraiser money to the hospital. It was a very fun day for all of Team Brax. Thanks to TCT and everyone that purchased hats and gave donations, we were able to present a check to the U of M Foundation for $3000!!! Brax asked that it go toward Child Family Life, which is a group in the hospital and clinic that helps the kids in every aspect of daily life, whether that be in the operating or hospital rooms during procedures or keeping things fun with activities and games during your stays. Everyone we have encountered has been phenomenal!
After her check signing Tuesday morning, we had labs drawn and things looked EXCELLENT!
Her numbers across the board were as good as they have been in 6+ months. Her ANC was a whopping 2.20. Low end of Normal is 1.3. We were thrilled. This is the highest her ANC has been since last August.
After labs, we just walked over to the hospital and checked in. The process & people are very familiar now and everything went smoothly. Her 24-hour chemo started late Tuesday night and ran thru Wednesday evening. Everything went very well again and Brax was feeling very good.
Thursday was another a big day as lil’ sis Bry finally got to come and spend the night with Brax. We have never seen a kid so excited to come and spend a night in the hospital, but then again, we have never seen a kid quite like Bry…..she’s a unique one!
Today the girls got up and Brax’s nurse Josie hooked Bry up with some wheels and they both hit the halls riding. Bry can ride a normal bike, but for the life of her couldn’t get the hang of 3-wheeler – go figure. At one point she even ran into a doctor in the hall, while Brax is riding and pulling her pole at same time.
After getting warmed up from their morning ride, they were back in the room for a little yoga! Kyle Rudolph’s End Zone had morning yoga, but only for kiddos 8 and up so Bry just missed the cut, but they broadcast to all the rooms in the hospital so they did their yoga in the room on their tri-fold mat (aka Bry’s bed).
After the ladies invigorating morning yoga session they went down stairs to grab smoothies. Nothing like a cold smoothie after a hot yoga class.
And the day was just getting started!! Grandma & Grandpa B, Alaina, and cousin Beckam all showed up to visit for awhile. Brax & Bry love baby Beckam so it was exciting that he was able to stop by for a bit.
After visiting for awhile, the girls went back down stairs to the Zucker Studio. This area of the hospital is provided by Jason Zucker of the Wild and this is where all the daily happenings and kids’ news is filmed. The girls had a fun time touring and playing with the green screen.
The rest of the day was spent hanging out. Brax has one more night and should be discharged Saturday AM. We were hoping for today, but due to chemo starting so late on Tuesday it made getting out today a bit of stretch.
All in all another very good treatment and half way thru Interim Maintenance I with no issues and feeling GREAT! We still have a ways to go, but every day is one day closer.
Thanks again to everyone for all the continued help, support and prayers. It makes all of this so much easier for Team Brax.
Her next treatment is set to start on June 25th. Brax also has some very exciting stuff coming up, but we will wait to share those details until we know more.
Also, a bit of fun news! TCT was name the “2019 JO Program of the Year” by USA Gymnastics. Awesome honor!! Congrats TCT!! #TCTProud
Sorry for the delay in the posting – things have been BUSY, but GOOD!
Last week 5/21, Brax didn’t end up making counts. She wasn’t ready and wanted another week off, so she was somewhat relieved when numbers came back low. Her ANC was coming up nicely, but only at 400.
This week, 5/28, her numbers were great and she was able to start Interim Maintenance I. Her ANC had jumped up to 1100!!! That is the highest it’s been in 6+ months.
Dr. Hilger’s did her LP that morning (she now has an LP to start every phase). Also, we got some sad news that Dr. Hilger’s will be taking an Attending position at Children’s Hospital downtown. She assured us that she will keep an eye on Brax, but also said with how well she’s doing and where she is now in the the process they probably won’t even assign another Fellow to her and just let Dr. Sadak and Melissa run with things. Still sad to see one of your doctors leave though.
After the LP, we were admitted and headed up to Floor 5. With this particular phase, Brax will be inpatient for 3-4 days and then go home for the remainder of the 2-week period. We have been told that even though she is inpatient she will feel pretty good while in the hospital and then “most” kids feel REALLY good when they are out for those +/- 10 days. And if you are wondering why she needs to be inpatient (as we were when this all started), she has a 24HR chemo infusion of Methotrexate and then fluids and recovery drugs immediately afterwards until the level of Methotrexate in her blood is under 0.1.
Brax was in very good spirits this time around and ready to start the phase. Also, it’s much easier when you can mentally prepare for having to go to the hospital, rather than the unexpected trips that land you there for a week. This stay was much more relaxed.
They got her chemo started Tuesday afternoon around 5:30PM. They rolled her IV stand in and it was quite the frankenstein looking thing (2 poles, 3 IV pumps and 2 syringe pumps….wowser!) Turns out that was a mistake and they disassembled and reassembled to get what they needed, but it was pretty eye-opening at first.
She had a good night Tuesday and a long day Wednesday with chemo nearly all day. She finished up around 5:30PM on Wednesday and now the push was on to get liquids in and the drugs out as soon as possible. Again, once you get under 0.1 they send you packing and it was Brax’s goal to get there as soon as possible.
She did a great job and kept mom busy with bathroom breaks for the next 36 hours. Every blood draw her levels were coming down and quite fast. She actually hit 0.1 on Friday AM, but they wanted it to be BELOW 0.1 and said they would draw again Friday afternoon. The afternoon draw came back at 0.04!! She was bustin’ out after 3 days!!
We also got the results back from the spinal fluid from the LP on Tuesday and everything looked fantastic! It’s always a relief to know things are working.
We got home Friday night and hung out for a bit with G’ma & G’pa Paulson who had been helping with Brylee this week and then off to bed. Was nice to be home!
Saturday was a great day!! It was probably one of the best she has had since being diagnosed. She felt really good (which they said most kids do), she worked out (even got ambitious and did some ropes – see video below) , ate great, and her overall attitude was an A+!
Again, as we have said before and will continue to say, THANK YOU to everyone for everything – parents, friends, coaches, teachers – you name it! It would be nearly impossible going through this without help and we can’t thank everyone enough.
Please continue to keep Brax in your prayers! She’s gonna keep killing it!