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.