Brax just finished Consolidation yesterday!!! Another phase to check off the list.
It’s been a bit since the last post, so i’ll do my best to update you on everything this past week+
Last Tuesday, Brax had her 3rd treatment of this 2nd half of Consolidation and it went well. She also needed both a blood and platelet transfusion since numbers were down. This treatment consists of two drugs, PEG & Vincristine, and has been the toughest on her every time thus far. She is usually pretty cooked for a couple days after this one and it proved to be the case again. We think this is probably the best she has felt after this specific treatment, but still pretty wiped out. The plus side, it has given her some time to catch up on some reading….looks enjoyable…yuck!!
They had us come back on Thursday to check her counts and see if another transfusion was needed and she checked out fine. Her platelets were low, but not to the point of needing a transfusion.
Friday, Saturday, and Sunday were pretty uneventful and that is the way we like it these days. The Team always says, “Boring is Good!”
This past Monday, Brax tried to go to PT, but wasn’t feeling great when she got there. Before they even started she got a dizzy and light headed, very similar to how she felt a couple Saturday’s ago. We called the clinic and took her in for blood work and she ended up getting both blood and platelets. Her hemoglobin was actually still slightly above where they wouldn’t require a transfusion, but since we were there we did both to give her a little boost knowing she would have her last round of treatment Tuesday.
Yesterday we went in for our regularly scheduled treatment and our last one of this cycle and phase!! Consolidation in the books!! Her counts are low, but good, and everything is moving in the direction we had hoped for.
We had planned to go to Florida this weekend to celebrate Auntie Em’s wedding, but Brax is going to stay back. She feels good, but just isn’t ready to jump on a plane and she made that call. She knows her body better than anyone right now and she just didn’t want to be stuck having to do any doctoring at an unfamiliar hospital (if needed).
We will go back in next Tuesday, May 14 to see if she can jump into the next phase of treatment which will be Interim Maintenance I. Again, when starting any new phase they need count recovery and we are fairly certain that Brax is going to have a week or two off based on how she trends, but you never know – she’s been known to surprise us.
This next phase will be a bit different too. There are only 4 treatments over the course of 2 months. Each cycle being 2 weeks and will include both inpatient and outpatient days. To start each cycle, Brax will be admitted for 3-4 days for 24HR high dose methotrexate and be given a recovery drug and fluids for the following days until she has cleared the drugs. Once cleared she will go home for the remainder of the 2 weeks and then start again once counts recover. We have been told that most kids will feel pretty good for these 2 months, both when in the hospital and out (been told really good when out). So we are hopeful she will tolerate this very well and we can get out and do a few things while she’s feeling good and counts are a bit higher.
Below is a quick overview of her roadmap. Delayed Intensification will be after Interim Maintenance I and that will be another intensive phase, but then things should get a bit easier in terms of treatment intensity.
Thanks again to everyone for the continued support. Everyone has been so generous in every aspect of this and we are very blessed.
Also, this past weekend was First Communion, which Brax received last year, but Fr. Paul asked if he could talk about Brax in his homily for this year’s First Communicants. Check it out on the Fun Stuff page!
We will update after our appointment next Tuesday with counts.