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.
Where’s Waldo Brylee?
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!
Brax’s Care Team – Dr. Sadak, Dr. Hilgers & Melissa. Thank you!!Brax & Shannon (Child Family Life – Unit 5)Brax & Coach Kim (TCT)! Thanks Kim!The Fam!
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!
Bry getting ready to call it a night!
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.
The ladies and their bikes cruising Unit 5.
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.
Brax, Beck & Bry! Quite the crew!
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.
Checking in to Room 5145 on Tuesday 5/28.Dr. Hilger’s coming to see Brax before she leaves. She will be missed!!
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.
Brax starting her 1st bag of Methotrexate. She ended up getting about 1 gallon of chemo over the 24 hour span.
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!!
Methotrexate levels after finishing chemo and throughout the next couple of 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.
CSF results looking great!Checking out on Friday. Killed it!
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+!
Brax and the ropes – getting a little Saturday morning burn in!
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!
Last Saturday (one week ago today) we were all supposed to be in Florida for Em and Bryton’s wedding – CONGRATS you two!!.
Brax was not feeling like traveling, so we made it a quick trip (2 nights for Mom and Bry and Dad flew down on Saturday morning for the wedding only). Well, it turns out Brax made the right decision as we instructed G’ma & G’pa Battaglia, who were watching her for the night, to temp her before bed as this is our usual procedure, never expecting any issues as we haven’t for months now. But not the case this night. We got a call around 9PM from G’ma Laurie saying Brax was running a little fever. With oncology patients anything over 100.4 is considered a fever and Brax was temping at 101.0 and a few minutes later 101.5. So, knowing the protocol we had them pack up and head for the U of M ED (emergency department)….lucky G’ma & G’pa.
They got to the ED around 10PM and with everything in the ED, things move very slowly. Being that Brax had a fever and counts were low it guaranteed her a minimum 48-hour stay. Her and G’ma spent most of the night and early morning in the ED waiting for a room to open up on Floor 5. Thankfully they rolled a bed into the room for G’ma as the ED rooms are not very comfy.
We all flew home on Sunday and went straight to the hospital. Brax was doing well, and no reason for her not be, as had she not temped herself the night before she wouldn’t have known anything was wrong. We were all relieved though to see her doing well and having her blood cultures come back negative for any infections. Now, like the times past we hang out and wait for numbers to come up so we can take off.
In this case, we had just finished Consolidation, so Brax’s bone marrow is pretty beat down and because of this numbers are not moving very fast. We were told this is very normal, which we were happy to hear. We were also told by one of nurses that 90% of kids have an inpatient stay during Consolidation, which was also very encouraging to hear, as Brax did great throughout those two months of Consolidation, but it finally caught up to her.
We spent Sunday, Monday and Tuesday in the hospital and were hoping we’d be able to get out, but no such luck. We needed her ANC to be at 500 and we were still at 0. Maybe the Ice Cream party in the lobby will help…a pint a day keeps the Dr. away…right?!?!
Brax loading up during the Free Ice Cream Day!
Wednesday her ANC finally moved to 100 and her AMC (Absolute Monocyte Count) which we don’t really talk about much was climbing, so the Team made a deal with Brax that once her combined ANC and AMC reached 500 they would send us packing. So another day hanging out. Wednesday was beautiful and Brax went out to explore the playground and shoot some hoops.
Where’s Braxo?
Thursday her AMC reached 600, but ANC dropped back to 0. However, since they told us the day before that once we had a combined ANC/AMC of 500 we could leave. Well, it turns out that we need SOME reading for the ANC (the fine print that we were not aware of). Another day of hanging out on Floor 5. We got a beautiful sunset that night!
Sunset from Room 5130 – AMAZING!
Friday was more waiting and Brax was starting to get restless. She was excited to go the Seeds to Supper Event that was going on that day, so that helped keep her upbeat and engaged. G’ma Laurie also came in that morning to do that with her, which was nice for both of them.
Brax enjoying her fruit kabobs while out and about Friday at the Seeds to Supper Event.
Now today, one week later, we finally got the OK to leave, but it took some experimenting and some number manipulation. Her early AM blood came back at ANC 0 and AMC 700. However, the Attending said let’s try something and see if we can get a better reading. He wanted her to ride her bike “fast” for 1 mile in the hallway and then do a blood draw immediately afterwards. He said physical activity can help release ANC to the blood. BINGO!
Brax did her mile and the before and after results are below. Her ANC moved from 0 to 100 and AMC jumped from 700 to 1100, so a combined ANC/AMC of 1200 with a postive ANC = DISCHARGE!!!
Reading from Early AM draw and then immediately after exercising – AWESOME!!
They actually let Brax run her own blood up to the lab and see what that looked like. She said that was the best part of the week….haha!!
Running blood to lab before getting discharged.
Everyone is now home and we will see what next week brings.
We know for sure we will have her Neuropysch testing on Monday. It’s a long 6 hour test to get a baseline. She’s not thrilled about it and don’t blame her.
Tuesday, we will go back to see how counts look and see if we will be ready to start the next round. Based on how she’s trending we may have one more week off, but you never know. Either way we are all taking it in stride as we have a long way to go, but everyday is one day closer.
Brax just finished Consolidation yesterday!!! Another phase to check off the list.
It’s been a bit since the last post, so i’ll do my best to update you on everything this past week+
Last Tuesday, Brax had her 3rd treatment of this 2nd half of Consolidation and it went well. She also needed both a blood and platelet transfusion since numbers were down. This treatment consists of two drugs, PEG & Vincristine, and has been the toughest on her every time thus far. She is usually pretty cooked for a couple days after this one and it proved to be the case again. We think this is probably the best she has felt after this specific treatment, but still pretty wiped out. The plus side, it has given her some time to catch up on some reading….looks enjoyable…yuck!!
Brax doing a little light reading!
They had us come back on Thursday to check her counts and see if another transfusion was needed and she checked out fine. Her platelets were low, but not to the point of needing a transfusion.
Friday, Saturday, and Sunday were pretty uneventful and that is the way we like it these days. The Team always says, “Boring is Good!”
This past Monday, Brax tried to go to PT, but wasn’t feeling great when she got there. Before they even started she got a dizzy and light headed, very similar to how she felt a couple Saturday’s ago. We called the clinic and took her in for blood work and she ended up getting both blood and platelets. Her hemoglobin was actually still slightly above where they wouldn’t require a transfusion, but since we were there we did both to give her a little boost knowing she would have her last round of treatment Tuesday.
Brax getting blood and platelets.
Yesterday we went in for our regularly scheduled treatment and our last one of this cycle and phase!! Consolidation in the books!! Her counts are low, but good, and everything is moving in the direction we had hoped for.
We had planned to go to Florida this weekend to celebrate Auntie Em’s wedding, but Brax is going to stay back. She feels good, but just isn’t ready to jump on a plane and she made that call. She knows her body better than anyone right now and she just didn’t want to be stuck having to do any doctoring at an unfamiliar hospital (if needed).
We will go back in next Tuesday, May 14 to see if she can jump into the next phase of treatment which will be Interim Maintenance I. Again, when starting any new phase they need count recovery and we are fairly certain that Brax is going to have a week or two off based on how she trends, but you never know – she’s been known to surprise us.
This next phase will be a bit different too. There are only 4 treatments over the course of 2 months. Each cycle being 2 weeks and will include both inpatient and outpatient days. To start each cycle, Brax will be admitted for 3-4 days for 24HR high dose methotrexate and be given a recovery drug and fluids for the following days until she has cleared the drugs. Once cleared she will go home for the remainder of the 2 weeks and then start again once counts recover. We have been told that most kids will feel pretty good for these 2 months, both when in the hospital and out (been told really good when out). So we are hopeful she will tolerate this very well and we can get out and do a few things while she’s feeling good and counts are a bit higher.
Below is a quick overview of her roadmap. Delayed Intensification will be after Interim Maintenance I and that will be another intensive phase, but then things should get a bit easier in terms of treatment intensity.
Thanks again to everyone for the continued support. Everyone has been so generous in every aspect of this and we are very blessed.
Also, this past weekend was First Communion, which Brax received last year, but Fr. Paul asked if he could talk about Brax in his homily for this year’s First Communicants. Check it out on the Fun Stuff page!
We will update after our appointment next Tuesday with counts.
Monday she got her PT in with Rachel and that is all going very well. She’s down to just one day a week now with Rachel, as that is all she really needs.
Tuesday is her normal treatment day this cycle and this week was just a shot thru the IV and no blood or platelets needed, so we got in and out. Hands down it was our fastest one yet – still a couple hours from start to finish, but that is fast these days!
Her ANC had only dropped to 500 which we were happy with. Her liver numbers are a bit elevated, so we need to monitor those as they want to make sure the levels of chemo are not causing other issues. The Team has been very transparent and said they will keep an eye on these weekly and if it means taking a week off or reducing some drugs they will do that if there is concern. As things sit now, she is doing great and things are moving exactly as the Team had hoped and we pray it continues. Dr. Sadak said at her last appointment that she should be hitting her stride as she has now had most everything they are going to throw at her with no major complications and he doesn’t anticipate any moving forward and, if so, he feels they will be minor.
Wednesday she had the day off – no PT, no school, nothing!
Brax and her Consolidation Calendar – we are getting close to another cycle in the books – 2 treatments left and on to Interim Maintenance 1.
Thursday Brax actually went to school for about an hour to finish up her state testing (reading this week) that she started with Mrs. Dahlke on Monday. It was the first time she’s been back in the building for over three months! Testing went great and she is pretty much, if not completely, caught back up.
Friday, Brax was feeling really good. Coach Kim came over to workout with Brax for about an hour which has been great, both mentally and physically. Big thanks to Kim for the help! And, BIG NEWS…..Brax did a back handspring….woot…woot!! (assisted, but still counts) She was pretty excited and for good reason! She’s determined and we are so proud of her for many reasons!
Brax has been working in the kitchen lately….our little “lunch lady” whipping up some sloppy joe, slop sloppy joe…..can’t help but think of Adam Sandler….hahahaha!!
Today, Saturday (or hemoglobin Saturday), one of her fast track teammate’s family opened a new ice cream shop and invited the team over for the Grand Opening. Brax was excited to go and see the girls and coaches. She went for about half an hour before she started feeling weird. She said she got light headed and felt like she was going to pass out. We knew with her hemoglobin being low that this was probably the case, so we weren’t completely caught off guard. Once she got back in the car and sat down she was fine, but she asked if we’d call the on-call fellow to see if we should come in. Being a Saturday the infusion clinic doesn’t have normal hours, so we knew we’d probably have to go to the ER. We talked to the on-call fellow and he said it was really up to us in this case as she had no fever, but Brax made the call to go. Her hemoglobin was in fact low, which we suspected, and they admitted her to the hospital for a transfusion. It’s a lot more involved when having to do it on a weekend, but everything went smoothly and she’s back home in bed tonight and feeling good – tired, but good!
Another good week in the books and looking forward to checking another treatment off the list this week.
Welcome Back Brax! Waiting to start blood – back on Floor 5! Just a quick 7 hour in & out!
We are all doing our best to keep things positive and lite and Brax continues to be a rockstar regardless of what gets thrown at her. I don’t think she cares much for some of mom and dad’s humor (especially dad’s), but she puts up with it!!
Sorry for the lack of posts this week. Brax had a very busy week, but a very good week.
Monday she had PT with Rachel and that is going very well. She also had school that afternoon which is going well too. She is nearly (if not) caught up to where she needs to be which is great.
Tuesday (Treatment Day) went well. We got into sedation early and had labs done to get her counts as this next 4 week stage is count dependent (ANC >=750 is goal). The initial quick results came back at 500, so we were a little bummed. Melissa said that final results can sometimes come back significantly different, so while we were waiting we looked over Brax’s other numbers and things looked really good, both hemoglobin and platelets. Her glucose was a bit low, we assumed from fasting for her IT chemo, so they started her on some sugar water while we waited. About 15-20 mins later final numbers came in and ANC was reporting 700 and Melissa said if she calculated it out by hand she was getting 715 and said she was OK starting based on how well things have been going. We all said ‘YES’ – let’s keep it moving. So we did start and will finish up Consolidation on May 7 – hooray!
Brax has felt really good, a bit tired, but good. We also made a decision to start her on an appetite stimulator to help her keep weight on. She’s doing ok on her own, but come end of the day she just doesn’t have much drive to eat and we know how important it is for her to keep her weight up for many reasons.
Wednesday was a lazy day.
Thursday, Brax had PT and school again.
Friday Brax worked out with Kim at home and then watched all the ex-Twisters compete in the NCAA Gymnastic Championships. Congrats to Maggie on another National All-Around Championship and Team Championship.
Saturday Brax biked 5 miles and felt really good. We also celebrated Easter with the whole immediate Battaglia family. The 4 older kids had their egg hunt in the backyard and Brax’s competitive side kicked into full gear and she found both the Gold and Silver eggs.
Brax, Bry, Landon & Brooklyn in backyard after the egg hunt with their fancy Easter Bags 🙂
Sunday – HAPPY EASTER!! – The girls had another egg hunt in the AM and then Brax dyed eggs with Grandma Paulson. We did Easter lunch after church with the Paulson family and hung out around the house. The girls got another bike ride in as it was a beautiful afternoon.
Brax dying eggs. Bry & Brax showing off the finished product!
This week looks to be pretty normal with treatment on Tuesday, and if no transfusions needed it will be a fast one. Hoping for another good “event free” week.
She was able to get some practice in (at home) with Kim on Friday and things are going very well. She actually did a back walkover (for the non-gymnast people this wont’ mean much, but it’s a pretty big deal for Brax!)
Saturday was a busy day. Saturday AM Brax dropped Bry off at practice. Her Fast Track teammates all sent her some love wearing their Team Brax hats.
Fast Track Teammates showing support for Brax!
“Please tell Braxton everyone says hi, that they all miss her and can’t wait for her to be back!” (text from Coach Kim)
Saturday afternoon she went to her Aunt Em’s wedding shower and got to see a lot of family she hadn’t been able to see since this all transpired. It was nice for all of them to see Brax and see her doing so well. People always seem to feel better after seeing Brax and to know how well she handling all of this. She an incredible little girl.
And Saturday night, we watched the UMD Bulldogs hockey (mom, dad and most of our family – Paulson & Battaglia’s alma mater) win their 2nd National Championship in as many years! Go DOGs!! #BackToBack
Today she had another good day and went to church tonight. It was Palm Sunday and this is the first mass she’s been able to attend since January. She’s getting better everyday!
We are anticipating Brax’s ANC will be ready to start the next 4-week cycle on Tuesday. We will update after that appointment.
Thank you so much to everyone for the continued calls, emails, and prayers. It means so much and whatever we are doing is working!
We had her appointment Tuesday and her ANC wasn’t high enough to start the next 4 week cycle. All her other numbers looked very good, but they require the ANC to be at 750 to start and once they start it doesn’t matter if it drops (they expect it too). So, she is feeling really good with no chemo for the last week and half. We are anticipating her being able to start this coming Tuesday based on how well she’s feeling and doing, but we will see. Dr. Sadak said it could be a week or two.
Today was a BIG day though!
Brax had HER first snow day of the year! Her teacher called this AM to see if we could reschedule since the district was closed. Brax was excited to claim an “official” snow day of her own today.
For lunch we went to Olive Garden (the wait time at 1:40 on a Thursday during a snowstorm is minimal…hahahaha!) Brax loves pasta in general, but has been craving Olive Garden lately and when she’s craving something, we have been trying to make it happen, as her eating is very spotty (always has been), but it’s so important we can keep her weight up for many reasons.
Brax & Olive Garden – true love!Brax and her port pillow she made with G’ma Judy to help with her seat belt.
And then to end the day we were able to cheer the UMD Bulldogs hockey team on to another Frozen Four Championship appearance! GO DOGs!! National Champs last year……repeat?!?!
One step closer to defending the title! @UMDMensHockey takes down Providence 4-1 the NCAA Frozen Four semifinals to advance to Saturday's Frozen Four title game. pic.twitter.com/ZJXle356U1
Brax has had a good week since finishing her 1st half of Consolidation this past Tuesday. Wednesday and Thursday she was a bit tired, but felt pretty good. Friday she started to get some more pep back and was actually able to work out a bit with Kim from the gym (at home) and today she was feeling very good. She has a fitbit as part of her PT program and they want her to get up to 10K steps/day as she gets stronger. She had 9505 today!
Brax out for a walk – feeling really good today!
Her baby cousin Beckam kept her busy this afternoon, as well. She helped babysit while the rest of family was at church.
Brax and Beckam!Brax and Beckam out for a walk!
As of now, they have Brax scheduled to start the 2nd half of Consolidation on Tuesday if her ANC has rebounded. We won’t know until we go in Tuesday. We are hoping we can keep things moving, but would not be shocked if we needed an extra week of recovery to get counts up. We will update on Tuesday either way.
Thanks again to everyone for all the continued prayers, support and gifts. We are so grateful for it all.
Also, fun note, check out the Fun Stuff page to see Brax’s doctor, Dr. Sadak, who was selected as 1 of 5 doctors to play in this weekend’s NCAA #HardwoodHeroes game and then giving a small speech while the Naismith Trophy was at the U today. Awesome!
