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!
Today was a big day. Brax had a great visit today with Coach Fleck. He and Nick (Development Officer, Children’s Health) stopped by to visit and drop off some SWAG. Coach Fleck commented on Brax’s U of M Gymnastics jacket right away and said Coach Hansen may have got him on the apparel (hahaha!), but he did bring one of his signature Oars signed by the team along with a bunch of other goodies…no one is complaining!! Coach Fleck hung around and visited for about 30 minutes and what you see is what you get – he’s got ENERGY – it’ real! He had a lot of good advice and encouragement for Brax and we can’t thank him enough for taking time out of his schedule to come visit. One of the most special things he gave Brax was the Captain’s Coin. He said there are only about 25 of these coins in world and having one of these makes Brax part of Coach Flecks “family”. He also said it entitles her to ask for anything she wants from Coach Fleck and he will try to make it happen, whether it be at the hospital, around campus or with the team. She’s planning to take him up in it!
The U of M Athletics have been great to Brax in her journey and we can’t thank them enough for keeping Brax upbeat and positive. Athletics, in general, are such a big part of our family’s life that we truly appreciate the love and support from all the awesome athletes and coaches that have reached out to provide prayers, support and encouragement.
Let’s have a little fun with Coach Fleck and Coach Hansen.
UPDATE: Olive Garden sponsored dinner at the Hospital tonight and Brax has been craving it – it didn’t disappoint. DELICIOUS!
Brax had a good night last night. Being back at the hospital is very familiar (feels like we never left). Her ANC was back up to 100 today, so we know things are working. We take all of this stuff as WINs. As mentioned yesterday, they want her ANC to be >=500, so she’s obviously not there yet, but she feels as good as she has this whole time and is still eating like a horse (thank you steroids!). The only thing we were not expecting, but understanding the reasoning behind it makes more sense, she will not be going home anytime soon. They said unless things really change, we should plan to be here for the remainder of her Induction Phase (end of February). They said with her numbers as low as they are, even though she is doing well, they don’t want to risk her going home and being exposed to anything that could get her sick (which would be dangerous at this point) and delay treatments. Blood work today showed no transfusion needed (great news!) and things are still on track for normal treatments on Thursday. They will keep her on antibiotics for now as well to help fight off anything she may be dealing with. Brax is OK with being here now that she’s back and going to make the best it. Her attitude throughout all of this has been very positive and is going to play a huge role in her speedy recovery. We have told her she has one job and that is to do everything within her power to stay healthy (mentally & physically). She has already requested her trike back so she can buzz the hallways in an effort to get some “exercise” in. She also made some bracelets today and the Family Life team has tons of stuff to do – you name it and they bring it.
Tomorrow Coach Fleck is supposed to visit. Brax is excited about that (so are mom and dad), so we will be sure to post tomorrow if schedules line up and it works out. Our schedule is pretty open 🙂
Also, for anyone wanting to help support Brax and the U of M, please make sure to check out the hats TCT is having made. Orders are due by 2/23. See the link below for more info.
Everything was going well after treatment on Thursday. Friday was good as well -a nice uneventful day. Saturday started out normal as well, but around 3:30PM G’ma Judy said she thought Brax felt a little warm. We temped her and she was – bummer 🙁 With oncology patients anything over 100.4 is considered a fever and is to be treated as an emergency and lands you a minimum 48HR hospital admission. She was 101.5. Brax said she didn’t feel any different and wasn’t acting any different so we were all surprised. She was NOT happy about having to go in, but it’s critical that we do with her counts compromised due to chemo.
We got to the hospital and had to go to ER with it being a Saturday. They immediately put Brax into the oncology protocol with her neutropenic fever. We were in ER for a couple of hours before they admitted us – back up to our friends on floor 5. Not thrilled to be back, but the Unit 5 team is AWESOME!
All initial blood cultures came back negative which is good and temp was down to 99.6. But protocol is 48HRs, 24HRs without fever and Absolute Neutrophil Count (ANC) >=500. Brax was around 400 when we were intially released, due to her feeling good and being otherwise healthy, but >=500 is the target. She was at 200 last night when we got to the ER which puts her in the higest risk category for infection which is why they treat it as an emergency. Today, her ANC was at 0! Basically, in lay terms, no immune system. This is not uncommon in oncology patients, especially during the Induction Phase, but not where we want to be. She still feels normal and her care team is still hopeful we will stay on track for treatments, but we really need her ANC to start coming back, both for her safety and to stay on track with treatments. The biggest concern is infection at this point and just having nothing to fight with. Thankfully, all of her cultures are coming back negative and it’s looking to be just an unknown fever that led us here (which is quite common at this stage of treatment). She’s doing well otherwise and hoping ANC jumps back up soon.
We will update as we know more. Thanks again to everyone for all the prayers, love and support. We can’t thank you all enough – it means so much to all of us.
Please continue to check out the FUN STUFF page. Brax is getting so much love from all over. Please keep it coming.
Last night the Fast Track coaches, gymnasts and parents came out to support Brax at the U of M Gymnastics meet. Thanks so much to TCT for the continued support and thank you to all the parents who were able to get their kiddos there.
Also, big thank you to Coach Hansen, Coach Stenger and the whole U of M Women’s Gymnastic team for all of their support as well. Coach Hansen sent us home with a bunch of SWAG for Brax….very cool!!
Last nights win over Maryland put the Gophers at 5-0 (Overall) and 5-0 (Big Ten) That places them 1st in the conference and #16 in the nation. Go G-O-P-H-E-R-S!
Check out the FUN STUFF page for a video message from the team and a voicemail from Coach Hansen.
Also, TCT is having “Love Your Melon” Team Braxton hats made. Braxton has requested that all proceeds go as a donation to the U of M Children’s Hospital. They are $45.00. If you would like to purchase one of these, please see the options below:
Order forms are avail at front desk @ TCT
Call TCT to place order over phone – (763) 421-3046
Contact Erin or Dan (see contact info at bottom of FAQ page)
Today we were back at the ‘U’ very early for more treatments (Brax was up showering around 5AM and not very happy about it) . It was the same as last week, with (1) IT chemo (sedated for this one) and then (2) IV chemo treatments upstairs in the clinic. Blood work before the procedure came back good and no platelets needed. Overall, another very good day of treatments. Last week we mentioned how the info we are getting back is all looking very positive (see Chemo Sessions 5-7) and today was more of the same. After her 2nd IT treatment of her spinal fluid, Brax’s WBC count is back into the Normal Range! Normal being 0-5 and when initially diagnosed she was 583 and then 14 last week (with some blasts) and now down to 1. We won’t know for a couple days if there are any blasts, but regardless, things are working and it’s very encouraging to see her spinal fluid and blood responding so well. The big date is February 28th when we do the next bone marrow biopsy and that is the one we need to come back good. That is where most of her leukemia is concentrated and will give a more clear picture of how things are responding. We are praying for AWESOME results and are confident we are going to get them.
Please continue to watch the FUN STUFF page. Brax is the MN USAG featured gymnast this month – exciting stuff! Also, Brax is getting a lot of love and support from friends all across the country (many monster names and programs in the gymnastics world) and we can’t thank everyone enough for all the good vibes, words of encouragement and prayers. Please keep them coming.
And, to end the post Brax wanted to show the Valentine’s box three of her friends/classmates/neighbors made for her. Awesome job gals and thanks so much for keeping Brax included as much as she can be. It means a lot.
The last couple of days have been very uneventful, which is a good thing in this case. Everything at home has been going very well. Brax is still tired but has been transitioning between upstairs and downstairs for a change of scenery.
Today we had our first “true” Lab Day. Everything went well. Brax’s port access went better (very little pain) and all blood work is trending in the right direction. No infusions or platelets needed. Some more very encouraging news today was that there were NO leukemia blasts in her blood, granted she didn’t have many to begin with as most are contained in her bone marrow, we are still taking this as a WIN. Dr. Hilgers did mention that there are some rare leukemia cells found in her genetic testing, but we really won’t know how or if that will affect anything until the 28th of February after her next bone marrow biopsy. The results of that will be what steers the next phase of treatments. We are praying for AWESOME results and the ability to keep moving forward with planned treatments.
She also had a CT scan today to check on her stomach/intestines/liver. Everything there looks good.
And finally, knowing that she will be losing her hair she wanted to dye it before it’s gone for a bit . We don’t when she will really start losing it, but they anticipate sometime during this first month – some has started to fall out already while combing. She decided on a fancy pink ‘do with purple tips. They have a team on the floor at the clinic that does this for you – quite the service! FYI – Brylee is jealous!
Next appointment is this Thursday for (3) more rounds of chemo. One via IT and two more via IV. We are hopeful for more good results.
Thanks again to everyone for the the prayers and support. We are so thankful to be surrounded by an awesome group of family and friends.
Special thanks this week to Uncle Scott, Aunt Jayme, Brooklyn and Landon for coming with gifts and food; the (2) Dan’s for helping out with snow (nearly a full time job as of late); Uncle Mike & Aunt Doreen for the food and treats (no one will be going hungry); TCT for the continued support; Great G’ma Battaglia and Aunt Lisa, the Littlers, the Bonks, Loews and Otterblads, Uncle John & Aunt Jane for the gifts; G’ma & G’pa B for the extra hands around the house and helping out with the day to day; Maggie, Coach Kindler and the OU gymnastics team for the swag; and everyone else that has sent cards/texts/emails.
Brax saw this image yesterday and wanted it posted. She’s so thankful and humbled with all the support she is getting from family, friends and many people she’s never met from all across the country. Everyday someone is stepping up to help Brax through this and all of TEAM BRAX cannot thank you enough.
If you haven’t been checking out the FUN STUFF page – check it out!!
Also, as a thank you and to encourage continued support, Brax designed wristbands to pass out later this month. We will get them to anyone who wants them and if you don’t see us regularly or are out of state, just shoot a text or email and we will mail them out. She has Toddler/Youth/Adult sizes coming.
The U of M Oncology floor gives their patients a stuffed bear and all the tools/supplies to help the kiddos understand what a port is and how it works. In the post yesterday, we mentioned Brax was having her port accessed for the 1st time since leaving the hospital (basically putting the needle back into her chest to allow universal access for both blood draws and IV treatments/medications – much nicer/easier than being stuck every time – OUCH!)
Brax wanted to share a video detailing the procedure. Enjoy!