Brax had another good round of chemo on Tuesday. It was a 1hr IV treatment with PEG. This is the one that wiped her out pretty good on day 4. She handled it much better this time around. It still knocked her down a bit, but she was not as weak and tired as before. Her hemoglobin was a bit low too, so they did do a blood transfusion after the chemo treatment. Brax has not had any issues with those and they seem to give her a nice boost once done.
We also sat down with Melissa to discuss Brax’s road map moving forward. We have another 5 weeks of this current phase (two 28-day cycles – mirror image of each other) and once this is complete and we start the next phase we will have our ‘official’ end date, which will be 2-years from the start of the next phase. It’s long, but at the same time exciting to see the end. And, the last 18 months are a lot less intensive, which we are all looking forward too. Melissa also said that the initial 6 week break they were going to give Brax on her lumbar punctures and IT chemo treatments they are going to revise and now do one again at the start of the next 28-day cycle. The reason being, now that they have things all clear and don’t anticipate any issues, they don’t want to wait 6 weeks with NO treatment. And even though Brax is getting IV chemo weekly, along with pills and shots, none of this treatment is directly treating the spinal fluid/CNS as it doesn’t penetrate the blood brain barrier. We, collectively, are all on board with adding the treatment and being overly cautious/proactive, especially seeing that Brax handles them so well and has little to no side effects.
Also, her platelets were a bit low Tuesday (which is normal), but not at the point of needing a transfusion, however, Melissa thought after this round of chemo and already being low, she would probably need one soon. She had us come back today to check. They were just below the threshold, which we all anticipated, so she did get a platelet transfusion this afternoon. This was her first time getting these and, again, things went very smoothly. It goes about twice as fast as blood, taking only 1hr instead of 2hrs. We had never seen platelets so were surprised they were so yellowish looking……pretty thick and sticky too – kinda nasty! Brax said they look like a mango smoothie (fyi – not us!)
After going thru all of this, it is truly amazing what they are able do with modern medicine! We are so thankful!
Brax had a great weekend! She’S still feeling really good and s now halfway thru her 1st month of Consolidation. She has her 3rd treatment tomorrow and is looking forward to, as are we all, no lumbar puncture and IT chemo treatment (will be the first time in 8 weeks without having to be put to sleep). Tomorrow she will only have IV treatments. One will be about 2 hours and the other one is short, about 10-15 minutes. She has had both of these drugs previously and has reacted well to both so we are anticipating more of the same. Her Team said her numbers (white blood cells and ANC) will probably be low as we are getting deeper into this phase, but so far they have not fallen off terribly which is great! We will update again tomorrow or Friday with Brax’s status and labs results. The By the #’s page has a running tally of all of Brax’s treatments, drugs, etc. so anyone who is interested in what this trooper is going thru in regards to the details, please check it out.
Also, one of the older girls at TCT was assigned an essay paper on the topic of heroes. She chose Brax as her inspiration and wanted to share it with us. All of Team Brax was so honored and touched by the essay, we asked if we could share for everyone to read. Thanks so much Lola!!! AWESOME!!
Today was another GREAT DAY for Brax! We got a call from Dr. Hilgers this morning confirming her CSF results as being ALL CLEAR – three in row!!
This was awesome new for many reasons, but biggest being things are WORKING! She is cancer free and continues to remain cancer free. Secondly, she can now get a break from the IT chemo treatments in her spinal fluid for 6 weeks. Below we posted the details of both her Bone Marrow Biopsy and CSF Evaluation. We will never get tired of seeing these results.
Brax also met with Mrs. Dahlke today to continue to work through some school stuff. She said, “it’s exhausting!” Hahahaha!!
She also made her NCAA picks. We are in a pool that picks 8 teams and so far she’s killing it – 4 for 4!
And then later this evening we had a nice visit with Marla and Bella. Bella is a neighbor who is also dealing with Leukemia (AML vs. Brax’s ALL). She is doing great and nearly done with her treatment – so AWESOME!. We are so happy for them! Thanks so much to them for the gifts!
Side comment – how strange to have 2 girls within houses of each both diagnosed with Leukemia less than 6 months apart – odds are very slim….very strange.
Again, thank you to our army of support for all the prayers, love and support! Everything is going the right direction and every day we are one day closer to a full and complete recovery.
Brax had another great appointment yesterday. She had (hopefully) her last round of IT chemo for awhile. She has had 2 consecutive “ALL CLEARs” and if the final results tomorrow come back Leukemia free she will get a 6 week break from these, which would be nice. She has had 8 in a row and a pause would be welcomed. We asked the Team if it’s normal to continue to do these treatments after she has been deemed Leukemia Free, and it sounds like they are being extra cautious due the fact that when Leukemia relapses, the spinal fluid is usually a common spot. In normal cases, once they get one “all clear” they don’t continue with the treatments, unless they are part of the normal schedule. Only about 10% of people have Leukemia in their CNS, so we are happy they are front loading treatments and being proactive in making sure they wipe this out the first time.
We also asked her Team how they feel things are going. They said they are very happy with her progress and she’s exactly where she should be – in REMISSION and feeling good! Her counts are starting to drop again, which is expected, but it also means things are working and Brax is feeling very good. In addition to her weekly chemo in the hospital and clinic, she is also getting chemo at home for the 1st half of this 28-day cycle. She gets a chemo injection of Cytarabine in her belly 3 days a week and takes an oral chemo pill, 6-MP, for the 1st 14 days. She’s handling everything in Braxton fashion and kicking butt.
More fun news from today – Brax started some school (at home). Her homeroom teacher Mrs. Dahlke actually took the home bound position and Brax was thrilled, as she gets along very well with Mrs. Dahlke and was bumming she was having to miss so much of this year in the classroom, so this is making up for it a bit.
Also, her Fast Track coaches, Kim, Veronica and James came over tonight to visit and do dinner. It was great seeming them as usual.
We will update tomorrow once we get the final pathology review back on her CSF. Please continue to keep Brax in your prayers – they are working!!
Brax had another great day and we are taking them all!
Today was extra special as Grace and her mom Sandy stopped by to visit and drop some gifts off. Both the girls are a little star struck when they see Grace at the gym, so you can only imagine when she was sitting in their living room.
Grace and Sandy are AWESOME! It was so nice to be able to talk to both of them about everything from Grace’s early gymnastics, their family, and her journey to a National Team member. They have been so supportive of Brax and we can’t thank them enough.
More great news to report from Team Brax! We had our appointment Tuesday for IT chemo and to start her next round of treatment, which is called Consolidation. The prerequisite to start Consolidation is an ANC of 750 (or close). When we discharged from the hospital last Friday she was at 200. So, knowing we needed to be be at or close to 750 in 4 days, we were hopeful, but skeptical. We were once again surprised and extremely happy for many reasons when her bloodwork came back showing the ANC up to 1000 – AWESOME! We are able to stay on schedule, her bone marrow is working, and she’s got some defense now to fight the day to day crud.
She had a great chemo session and then went down to surgery for her IT chemo. We got her preliminary results back yesterday and, again, there were no signs of Leukemia, but they still had to have pathology review under the microscope. We got those results back today and they confirmed the original findings. – NO LEUKEMIA! She will have one more IT chemo treatment this coming Tuesday and if it comes back all clear, she will get a 6-week break from IT treatments, which would be very welcomed.
In addition to her IT and IV treatments this week, she is also getting a Chemo shot in her belly for (3) consecutive days after her in-hospital chemo for the next two weeks. She’s not loving this, but like everything is handling it like a champ and know it’s all part of the process to final goal of CURE! She also is taking a chemo pill during the first 14 days of the this new session. Everything is going very well with little to no side affects. She’s feeling good, eating good and even getting some workouts in.
Brylee was excited as well to have big sis home. And Braxton, as much as she likes to give Brylee a hard time, was equally happy to be home with her partner in crime! She even showed her weakness a bit this past weekend when she made the comment, “I wish Brylee was here so I had someone to play with!” They didn’t waste anytime getting after it. They took a very aggressive approach to making sure there was no exchange of germs – knuckleheads!
More gifts came in this week and one of Brax’s favorites, Simone Biles, sent some signed gear. Thanks so much Simone for signing and sending this stuff over – it means alot to Brax.
And tonight, with her counts up and feeling good, Brax was able to get out and see her teammates from the gym. It has been about 2 months since she has been able to see them and it was GREAT!! Kim and James cut practice a bit early and everyone met at a local restaurant to visit. Thanks so much to everyone for taking the time to stop by and say hi. Again, the support from TCT as a whole and Brax’s Fast Track group has been amazing and all of Team Brax is so appreciative of all of this. It makes going thru a very hard situation much easier!
Brax had an awesome Sunday!
She’s feeling great and we are taking advantage of all of these good days, as her next round of chemo is scheduled to start on Tuesday if counts are good.
Today she was BUSY! She got up and worked out (work out = walking @ 1mph for 10mins 🙂 ) on the treadmill and did some stretching. It’s great she’s feeling as good as she is and wanting to be active. She actually wanted to do a 2nd work in the afternoon too – nice!
After lunch she did some baking. It turned out great!
And throughout the day she was busy working on a new Harry Potter Lego set. She has spent a couple hours on it and still has a couple left it looks like (3 bags to go for all you Lego folks)
And tonight, Brax’s cousin Beckam came over to visit. Brax has not seen him in a couple of months and was so excited for the visit. He’s gotten a lot bigger since she last saw him in early January.
Also, some of Brax’s friends, Evelyn and Andie, who happen to be in the same grade and same neighborhood (all only a few houses apart) shared some photos of them donating their hair to Locks of Love today. Thanks so much gals, such a nice thing to do in support of Brax!
Brax was also able to visit with Kate and Ellie on Friday when she got home. She has been busy and it looks like she has plans to see some more friends this week.
Great weekend overall!
We are home! Brax’s ANC is still low, but because she was doing so well the Team said they can’t justify keeping her in the hospital. The monitor board refreshed with a suitcase icon on it so we had a pretty good idea we were getting close and it feels great to be home.
Our next round of chemo which is now Consolidation, the previous round was Induction, is scheduled to start this coming Tuesday. She will have 56 days of treatment during this first part of Consolidation broken up into (2) 28 day cycles. Each 28 day cycle will be identical. She will also continue to have IT chemo for the next two weeks for sure and TBD on remaining treatments. We are hoping to get our complete “road map” on Tuesday in the clinic, but below is her schedule for March and April – still very intensive.
Because of Brax’s ANC being lower than they would like they wanted us to do an antibiotic at home. We did the first one last night and Brax had an allergic reaction (scratchy throat, swollen lips, some red in face), so we called the hospital and they said to discontinue and take Benadryl. Thankfully that worked and no need to go back in. We talked to the Team today and they have actually discontinued the antibiotic. Brax is very happy about that and feeling great today. She actually has snuck downstairs to workout a bit – wink, wink! We are not sure if she is cleared to be doing this but she wanted a cartwheel videoed so everyone knows she’s doing great!
Also, when we got home Brax had a ton of gifts from family, friends, and the gym. Below are some things that she received from Morgan Hurd and her gym. A couple of signed Team USA leos, a shirt and post card. The support from the gymnastics community has been incredible and they continue to amaze us.
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!