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!
Brax started the day with an IT treatment (her 2nd of this type and 5th chemo overall). This was the first time she had to have her port accessed since leaving the hospital and it was a bit sore still, but she handled it like a champ. The cleaning was worse than the needle per Brax.
The IT treatment went very well (she is put to sleep for these) and her Nurse Practitioner Melissa Claar, who we met today and who will be heavily involved throughout this process, performed the procedure. She is great as well. The whole team is great.
After getting back to recovery and in between going up to the clinic for her two IV chemo treatments, Brax was able to get a quick bite. It was now around 1PM and she hadn’t eaten since about 1AM (yea, 1AM – she woke up and needed a bowl of Cinnamon Toast Crunch in bed). She was getting “hangry!” Fries, four nuggets and a pineapple mango smoothie later and we were happy and heading up to the clinic for more chemo.
We got up to the clinic and received her schedule for the next 7 weeks. It’s intense but she is doing great and it looks like things slow down a bit after the next 3 weeks.
Now here is where things get REALLY EXCITING. Due the fact that Brax doesn’t have many leukemia cells in her blood (mostly all contained in the bone marrow) we won’t get a real clear picture of progress until her next bone marrow biopsy on February 28. However, because they found leukemia cells in her spinal fluid and are treating that weekly, we are able to get a read on how that is going as the fluid is tested weekly and the results today were AMAZING!!
Below are the CSF (Cerebrospinal Fluid) Cell Count results from last week when she was diagnosed. Healthy individuals will be close to 0 for both WBC & RBC CSF and Brax was 583 and 233 respectively – yuck.
Today, after her 1st treatment from last week, her counts were already down to 14 and 3 respectively!! Nurse Melissa was very happy with the results and we were THRILLED, to say the least. And, in general, her overall CBC (complete blood count) was good with many key areas improving, which shows us that things are working and she’s getting better each day.
Thanks again to everyone for the calls, cards, texts, gifts and prayers. It’s helping all of us through this and please keep the prayers and good vibes coming. Today was a GREAT day and we are looking forward to many more.
Brax now has a week off from treatment to recover. She will go back for labs (and transfusion if needed) next Tuesday and three more treatments on Thursday.
Brax was feeling better today and did a great job eating and getting fluids in. Her last chemo session this past Sunday was a long one (longest yet and longest she will have during the Induction Phase) and knocked her down pretty good (very tired, but otherwise good). Vinny was called in today to do some doctoring and everything checked out good.
Tomorrow will be a long day. She has 3 consecutive treatments – (1) IT treatment (she will be put to sleep for this) and then (2) IV treatments following that. This will be her normal schedule going forward for the next few weeks. She has already had both the IV treatments and did very well. The IT treatment will be using Methotrexate. She was on that previously for her JIA and responded well, so we are hopeful tomorrow goes smoothly and she can get back home to recover for a week.
Brax got discharged today! She’s still pretty tired after her chemo from yesterday and the doctors have told us that will be pretty normal after treatments. We are hoping she bounces back a bit tomorrow. But overall the doctors are happy with everything so far and she’s right where she should be at this point in time.
Also, we got a call from Coach Fleck today. Dr. Sadak mentioned we were big football fans and got the ball rolling. Brax was excited to hear his message (message posted on Fun Stuff page) and he’s set some time up to meet her at one of her lab appointments on February 19th.
Nothing for the next couple of days now – going to try to get her on her “new” normal now that we are home. Our next appt is on Thursday and she will have 3 more rounds of treatment. One intrathecal (IT) in the spine (she will be put to sleep for that) and then two more IV treatments after that. It will be another big day.
Thanks again to everyone for the calls/texts/cards. It’s means a lot and we are very blessed to have a great network of family and friends.
Brax had her 4th round of chemo around lunch. This was thru IV again and her longest one yet (and longest one she will have during the Induction phase). She is doing great and we have been told we will be discharged tomorrow at some time, barring no set backs. We will normally have labs on Tuesdays, but with being discharged on Monday I don’t think we will need to come back until Thursday.
Brax is excited to get home and sleep in a normal bed and see Vinny.
Headaches begin after practice. Headaches continue and fatigued, but no other symptoms (no fever, no sore throat, no cough, no runny nose)
January 14, 2019
Brax visits her pediatrician, Dr. Saha. She was tested for strep which came back negative, so assuming some type viral infection. Follow-up appointment scheduled in one week.
January 21, 2019
One week follow-up with Brax’s pediatrician. No real signs of improvement. Still very headachey and fatigued. Overall in pretty good spirits but has been missing school and practice. Dr. Saha orders mono test and quick test comes back negative.
January 23, 2019
Got phone call from Dr. Saha that extended blood work came back and is pointing toward mono, but not definitive, and would be sending to another team for review.
January 26, 2019
Brax still not feeling well and with today being a Saturday, Dr. Saha had told us if we want/need to see doctor they would recommend we go to the U of M since this is where Brax has been for her JIA treatments and they would have a good team on hand over the weekend.
We went to the ER around lunch time and they did an exam and still no real answers. They gave her an IV to see if that would help, but after blood work came back with no major findings, the on-call MD felt this was something that needed more attention after 19 consecutive days of headaches and fatigue (still no other symptoms).
We were admitted that afternoon onto a General Floor at the U of M Masonic Children’s Hospital and had ultrasound that evening.
January 27, 2019
More blood taken and the teams were called in to sort things out. The departments included Pediatrics, Hematology, Oncology, Rheumatology and Infectious Disease. They were still leaning very heavily toward some type of viral infection as blood work was not showing any definitive results.
January 28, 2019
More of the same today. Brax’s Rheumatologist visits to check on Brax and give her a quick exam. They have pretty much ruled out any other rheumatic disease at this time. Later this evening, we get called out of the room by three doctors from Pediatrics, Hematology and Rheumatology and asked us to come sit down in lounge with them. They said based on everything they are seeing and confirming what they know she didn’t have they were quite certain Brax had B-Cell Acute Lymphoblastic Leukemia or B-Cell ALL, but they wouldn’t be able to confirm until the next day after doing a bone marrow biopsy. We were crushed to say the least. We told Brax that nite and she cried for about 30 seconds (a lot less than most of us) and said she understood and was going to fight. She also received a blood transfusion this evening for hemoglobin.
They move us from the General floor to the Hematology/Oncology floor this evening as well.
January 29, 2019
Bone marrow biopsy performed in AM. Results confirm B-Cell ALL and she is considered Standard Risk. Tough day, but were prepared for it – now time to get things in motion. We called family, friends and teammates as Brax wanted everyone to know right away and at the same time so there was no one wondering or questioning – strong little girl.
January 30, 2019
Nothing planned for today – friends and family came to visit. Sadie & Michelle; Ellie, Kellen, Dan & Kate; Anni, Cathy & Jimmy and her TCT coaches – Kim, Veronica and James. It was a good day in light of everything going on.
January 31, 2019
BIG DAY! Brax has port put in to make infusions and blood draws much easier. She then has spinal tap to determine if any leukemia cells are present in her spinal fluid and while doing that a round of chemo is applied. Protocol is to treat her CNS fluid regardless if leukemia is found as it can sometime hang out there and IV chemo is not effective. She also, has her first round of IV chemo today as well. She handled both extremely well, but ran into a fever that evening. We are not sure if from the chemo or just the amount of shock to body after all the procedures.
We got Brax’s schedule for treatment based on initial results of CNS fluid.
February 1, 2019
The Hematology/Oncology team meets with us in morning to deliver another little set back. Leukemia cells are present in CNS fluid and treatment now needs to be modified to more drugs and higher frequency and radiation at some point, moving her from Standard Risk to High Risk. In addition, they schedule her for an MRI later today and an Echo to make sure her heart is handling the chemo and able to handle the extra chemo. Definitely not the news any of us were hoping for, but MDs assure us that the end goal is same, just a couple extra steps to get there. And with this news comes another round of chemo today – making it her 3rd. Below is here treatment schedule for the 1st month or Induction Phase of chemo – she will be busy, but she’s holding strong and has been AWESOME throughout all.
February 2, 2019
Met the Team regarding her MRI and Echo results. EVERYTHING LOOKS PERFECT!!! Finally some good news – normal day today – no surprises. Brax feeling good and able to get out of room.