Brax continued to move forward with Block 2 of chemotherapy treatment at the end of December. Block 2 is another intense block of treatment following her 30 day inpatient stay for Block 1 Induction. Due to no evidence of disease after her bone marrow biopsies her team decided to continue along the chemo path for Block 2. We were thankful that Part 1 of Block 2 was outpatient since that allowed Brax to be home for Christmas and a majority of Brylee’s holiday break.
On December 30th Brax started Part 2 of Block 2 and this phase included a sedated lumbar puncture, 36 hours of methotrexate, and another Peg all to be done inpatient. She needed to stay inpatient until her body cleared the methotrexate. Good news is that she cleared the chemo very quickly but bad news is she had a very rare reaction to the chemo that created chemical like burns on her hands & feet. It was extremely red, swollen, and painful. Due to her blood counts being good they let us go home with an antibiotic and a huge tub of Aquaphor to recover. It was painful for her to walk and use her hands, but she was thankful to be at home. She also developed mouth sores, which are a common side effect, that delayed her from starting part 3 of treatment until they healed.
On Tuesday, January 10th she was admitted for Block 2 Part 3 which is all inpatient. She had 10 chemos in 5 days (5 cytoxan & 5 etoposide) which was very intense and definitely one of the tougher treatments she has experienced. The doctors want to keep her inpatient until her counts bottom out and start to recover before she can go home. Since this is her second time going through therapy she is even more at risk since the body has already been through 2.5 years of chemo and radiation. Brax is exhausted & nauseas but hanging in there – we will be happy to put this block behind us and move on to targeted therapy for her next round of treatment. We finally received the results of the genetic testing from her leukemia. Our team has decided that between the results of her bone marrow tests, her genetic testing, and consulting with a few other experts in the field that Brax will go down a 2 year chemotherapy path. The difference this time will be the introduction to a new targeted immunotherapy drug Blinatumomab (aka Blin). This drug hunts out the leukemia cells that may be hiding and going undetected. Our team is hopeful that the combo of chemo and Blin will be the cure. We would still have the option to use CAR T or Bone Marrow Transplant if needed in the future. Hopefully we won’t need these options but always nice to have options just in case. Brax received a blood transfusion and her first IVIG infusion after her counts bottomed out about 10 days after starting chemo. Now we are just waiting for her counts to recover before being discharged. We are looking forward to having Block 1 & Block 2 behind us and moving on the Blin cylcle 1. She will start this cycle inpatient for a few days but the rest should hopefully be outpatient and she should feel much better!
And for anyone looking to get out and support TB1 Fund, our 3rd Annual TB1F Champion’s Cup presented by Cub is back this April. If you’ve been before, you know what to expect (some new additions this year though). If you have never been, it’s fun night and you wont be disappointed….promise! One BIG addition this year, PA will be calling the (4) races…..he’s is going to put his spin on things….buckle up!
To learn more, see past year’s videos or purchase tickets visit the link below.