Month: February 2019

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!

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.

TCT & Love Your Mellon

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.