Author: TeamBrax

and Some Awesome Visitors!!

Today we got some more GREAT NEWS! Brax’s CSF is now LEUKEMIA FREE, making her COMPLETELY CANCER FREE and on the best possible track. We have a long road ahead still and many months left of intensive treatment (6-8 depending) and then a couple of years of continued maintenance treatment,but we couldn’t be happier for Brax and where she is and how she’s responding. Today was a HUGE WIN!

Also, they initially told us they wanted her ANC to 500 before they discharged us, but with as good as she’s doing and some other numbers doing really well, the Team is thinking we may possibly get out tomorrow (Thursday), which would be great.

Brax has been busy since our last post and feeling very good and very active, both walking and biking the halls, getting her PT in and even making an occasional trip down to the lobby to hit Subway and the smoothie shop.

As we mentioned, Coach Fleck and his wife Heather asked about coming over last week and they showed up on Tuesday AM. Coach had a bunch of cards, all personally hand written, from 106 of the players and staffers – how cool is that! Brax read every single one. There were a handful that really caught her attention and one of those players actually stopped by today. His name is Casey O’Brien and he knows Brax’s situation very well. Casey has beaten cancer 3 times and is still going thru treatment. He said when heard about Brax from Coach Fleck during a meeting, he wanted to stop by. It was great getting a chance to meet him – awesome kid!!

Thanks again to Coach Fleck and the football team for being huge supporters of Brax. We can’t thank them enough for the time and energy they have put into keeping Brax upbeat and encouraged. Thanks U of M Football!

And, again, (we can’t and won’t stop repeating this), THANK YOU to everyone for everything. This first month has been as good as we could have asked for in every respect under these circumstances and we are truly grateful!

Brax had a great day – maybe her best so far since this has all started. Her numbers are climbing which is very encouraging. Her WBC count finally took a big jump from 1.2 to 1.6 today (over 30% – huge!!), her ANC moved from 100 to 200 and her platelets moved from 215 to 336, which is perfect! (150-450 is Normal).

She’s ready to leave, but her team requires her ANC to be 400-500. We are hopeful that happens in the next couple days. Also, she needs to get her ANC to 750 to start her next round of IV chemo. The team has said ANC recovery is different for everyone, but we are hoping she gets to where they need her sooner than later so we can keep moving forward with treatments.

Brax set her single day record for walking and biking with 17 laps on floor 5 (1 lap = .1 miles) and she did some walking around the hospital today as well. She’s feeling really good, looks really good and is ready to go home as soon as they let her.

Thanks to Michelle and Sadie for stopping in to say hi today!

Also, Coach Fleck and his wife Heather asked if they could come by again to visit this Tuesday, so Brax is very excited for that.

WOW – already March! February was a blur for Team Brax but everyone is doing great after our news yesterday. Brax is doing great. We are just waiting on numbers to come up now and they will let us leave. Once we get home, we should be home for the next phase of treatments unless Brax has a fever or gets sick.

This weekend is also a big one for Grace and all of TCT. We are wishing Grace the very best at the American Cup this Saturday in Greensboro, NC. We will be watching and cheering – we know you will KILL it! And, TCT is hosting one of their two big yearly events, Northern Lights Classic, at the Minneapolis Convention Center. Good luck EVERYONE!

Have a great weekend!

We got AWESOME news today! There was NO Leukemia found in Brax’s bone marrow!

We couldn’t be happier. There still were a few blasts in Brax’s CSF, but these results were from last week’s treatment, as they draw fluid for testing while they are doing the current treatment. She had the big IT Triple treatment yesterday and the doctor’s are not all that concerned about the small amount in her CSF – they need it gone, but are very confident it will be anytime now. Dr. Sadak said the “factory” (aka bone marrow) where this was coming from is no longer making it and they expect the CSF to be clean soon (maybe already is!!).

Brax’s BIG3 numbers are continuing to climb as well (WBC, ANC & Platelets). Her platelets are actually back into the normal range today – YAY!! Her WBC and ANC are still low, but her ANC actually rose from 100 to 200 today. We need that to be 500 to go home and 750 to start her next round of chemo. We are hopeful these will start coming up soon now. We think they will still proceed with her IT chemo this coming week even if they don’t start her next IV chemo treatments.

We can’t thank our army of support enough for all the prayers and encouragement. Things are definitely moving in the right direction and today’s results are HUGE!

Brax had another good day today. She had her bone marrow biopsy done this morning and we are hoping to get preliminary results back tomorrow, with final results coming Monday. They also increased her IT chemo today to try and kill whatever is left in her CSF. The IT Triple (or ITT) today consisted of methotrexate, cytarabine, and hydrocortisone. She had no IV chemo today, and as of now, the new cycle will start this coming Tuesday instead of Thursday. We are praying for good results come Monday and to keep on the current track moving forward.

The only thing she’s not loving is that she woke up with a rash out of no where this AM so we are trying to figure that out. Nothing has changed much and the team is thinking it may be a reaction to her antibiotics. They are going to switch her this evening to something different and see if that clears it up. It doesn’t hurt, but does itch and it’s more annoying than anything.

Also, Team Brax bracelets are in! We sent hundreds to the gym to be passed out and we will be getting them to everyone else that has asked as soon as able. Thanks for “wearing” your support – Team Brax appreciates it! Also, if you want bracelets and haven’t already reached out or are not local, just let us know (contact info on the FAQ page).

Thanks again to everyone for the calls, texts, emails, Facetime, and gifts. It keeps all of Team Brax motivated and encouraged!

Today was another good day. Brax met with her care team today a number of times to discuss how things are going and how she is feeling. We got some more info back on the CSF and even though it’s at 0, there are still a few blasts and they really want to see those gone, as do we all. So, this Thursday during her IT treatment they are going to throw two more drugs into the chemo-cocktail in hopes of destroying what little is left. And, again, it may already be gone as results are always a week behind treatments as they draw the fluid before they treat it. But since Brax has been handling things so well I don’t think they want to delay things a week and would rather do this now and be as aggressive as able. Thursday will be a big day with the added chemo and the bone marrow biopsy. They are saying we most likely will not have those results back until Monday. They will share whatever preliminary results come through per normal, but final results they are not expecting until Monday. After that we will fall into one of three categories – (1) Leukemia is completely gone (ideal but doesn’t always happen), (2) some Leukemia left at which point they address based on where and how much, or (3) current treatment not working as desired and will need to explore other avenues. We of course are praying for #1, but we are going to deal with whatever is thrown at us and continue to FIGHT!

Brax got out and about again today and is keeping herself FIT! She had another PT session today and things are going very well considering everything she’s going through. One funny thing, they had her try to jump the other day and that was a real show. I’m not sure her toes came more than 1/2″ off the ground….we all just laugh (and you all would too if you actually saw it). She’s been a good sport throughout all of this and even with a few defiant moments here and there she always ends up doing what needs to get done to give herself the best shot of a FAST and FULL recovery. She continues to amaze everyone everyday!

Also, some very exciting news in regards to a request from Mariah @ triplefull to do an edit of Brax. Check it out below. This is very cool and already has over 4000 views on Mariah’s Instagram @ triplefull. Thanks so much to Mariah and Sandy McCallum for doing this. It’s AWESOME!

https://www.instagram.com/p/BuXLckDFtzY/

First, thank you to everyone who ordered Love Your Mellon hats in support of Brax. The order was submitted yesterday and we will get hats to everyone as soon as they arrive. If you missed out but still want one, we have been told there will be some extras. Second, wristbands are due this week. We will get them out as soon as they arrive so everyone can start “sportin’ their support”.

Today was another “boring” day in Room 5122. And “boring” is exactly what the doctors want at this point. Boring = Good. Brax is doing very good after chemo on Thursday and continues to get stronger. Today, Grandma Judy got Brax masked up and “broke her out” of floor 5 to do some exploring. They took a wheelchair and buzzed around the hospital and then over to the clinic and ended up at Subway (it’s in the hospital – don’t worry). She also got some exercise today walking and riding the halls. Brax is a big fan of her wheels and really likes Sunshine Alley.

After a busy morning, Brax cheered on her sister Brylee at her gymnastics meet. We had to send her videos after each event for critiquing and she was keeping up with live scoring on her iPad. Brylee had a great meet with a 1st place bar routine (9.800 – wowser!) and a 3rd All-Around. Brax was very happy for her – wishing she was there, but cheering all the same!

After dinner (buttered noodles & meatballs from Noodles – a big time favorite!) our priest, Fr. Paul stopped by to say hi. He’s a big runner and earlier this month he ran a 5K he dedicated to Brax and finished 2nd in his age bracket – congrats Fr. Paul! He wanted to give the medal to Brax. Brax said she’s going to dedicate a medal to Fr. Paul when she gets back at it – sounds like a great plan! We had a nice visit and Fr. Paul was able to do an anointing of the sick for Brax which was great! You can see below how nearly all of her hair is now gone. She still looks amazing though – we love the big face and big eyes!

Brax had another good day. No big news to report, except that her hair is starting to go fast now! She doesn’t care about her hair and hasn’t since she knew she would be losing it. She’s more interested in what she’s going to look like with no hair. She’s taking everything in stride and kicking butt doing it.

A few pics of the ‘do below. It’s pretty gnarly right now and every time it’s combed out she loses more and more. Today we set some records! We don’t anticipate there being much of anything left soon. This is where all of those hats are coming in HUGE!

Brax had another awesome day! Today was the last big round of treatments before her bone marrow biopsy next Thursday. Her hemoglobin was at 7.5 this morning and generally 7.0 is the cutoff requiring a transfusion, but because she was having chemo today they gave her a transfusion this AM to give her a little boost.

She then went downstairs to Sedation for her IT chemo. Every went PERFECT (Dr.’s words) and she was back in recovery after about 20 minutes. After waking up and eating (this girl has been an eating machine the last couple of weeks) they sent us back up to our room for the next (2) IV chemos.

Both the IV chemos went well and she was still feeling good after they were done. About 30 mins after her last treatment her PT came in and asked if she was feeling up to working out a bit – she was, which surprised all of us a bit, but we were happy to see it and her doing so well.

We also got the preliminary CSF results back and they were Fab-U-lous . Both her WBC and RBC are now at ZERO!!!  This is exactly where we were hoping to be and we are just waiting for pathology to review and see if her CSF is Leukemia Free. We are hoping it will be gone or very close to gone with her cell counts at 0. But very positive news either way.

We also got a phone call from Dr. Sadak confirming what we saw and saying how everything thus far is trending in the right direction. He also said these first 28 days are so critical and Brax is responding very well with no major issues which is very encouraging. He said he believes this is partly due to her coming into this so STRONG. Thank you gymnastics! Overall, the conversation was very positive, but we still have the bone marrow biopsy to get thru next Thursday and that will tell the full story. We are going to celebrate the WIN today, but know we still have a long road ahead. However, good news next Thursday would be icing on the cake to end the Induction Phase.

We will update again once we get the final CSF results back from pathology.

Thanks again to EVERYONE, for EVERYTHING!

#IGotThis

Also, final reminder for anyone looking to get a Team Brax Love Your Melon hat. TCT is closing up orders on 2/23. Please contact them or us if you would like one (all info in post below)

TCT & Love Your Mellon

Brax was laying in bed today and we were talking with her about everything she’s experienced at her young age of 9 – glasses, braces, JIA, and now Cancer. We were talking about her JIA diagnosis this past summer and how well she did coming out of that as fast as she did and she chimed in with a sarcastic comment regarding cancer, “I guess I needed a bigger challenge.” Then shortly after and more seriously said, “I wouldn’t change anything that has happened to me, this makes me who I am”. She’s one tough little girl. We have told her that God will never give you more than you can handle and this little girl can handle A LOT!

Overall she had another great day! Her headaches are gone, her stomach issues have been much better and she’s getting physically stronger. Her old goofy self is starting to show up again and it’s nice to see. She’s been out tearing up the halls on her trike, bossing us around and eating like a horse.

Also, she wanted to show off her custom blanket from the Fast Trackers & TCT (see picture below). Thanks so much to Jen Doan for putting this together. It’s AWESOME!

Tomorrow we have another big day of chemo. She has responded very well physically to all of them so far and we anticipate more of the same. This is the last big round before her bone marrow biopsy next Thursday. That is the day we are anxiously awaiting, as that will lay the ground work for Phase 2. Ideally, we want to see the Leukemia cells gone and if not entirely gone, nearly gone.

Emails, texts, videos, gifts and calls continue to come in and we appreciate them all. It makes going through all of this a lot easier knowing we have an army of support behind us. Thank you!