Week 2 was less intense than week 1 and the timing was great with it being Thanksgiving and Brax’s birthday. It was a busy week that started off with a port needle change, physical therapy, a pedicure.
Tuesday was a very big day that started with a sedated lumbar puncture with chemo and IV chemo in her room that afternoon. We also had a consultation with the Bone Marrow Transplant team. We won’t know her treatment plan until after the results of her bone marrow biopsy on December 13th, but we want to be prepared for whatever path Brax will go on. Having a BMT would be the most aggressive treatment plan, but we did receive the amazing news that if she needs a BMT her little sister Brylee is a full match! Hopefully Brax will not need a BMT, but it is good to know that if she ever does that Brylee is the best chance of her having a successful transplant. The day concluded with a visit from Minnesota Wild players Kirill Kaprizov and Mats Zuccarello. One of the best things about being a Masonic patient are all the awesome athlete visits.
Wednesday she had a few of her good friends visit and drop off gifts for her birthday. It was great for Brax to get a chance to visit with some friends and we are thankful that visitors are allowed at the hospital.
Thursday was Thanksgiving and Brax had more visitors, had Thanksgiving dinner brought in, Facetime with her little cousins, and watched football all day.
Friday she woke up a teenager! We had a super fun weekend planned to go to Wisconsin Dells and the Gopher v. Badger game but we will have to do that another time. Next year the Axe game is home and on her actual birthday so we are already looking forward to that. Brax did spike a fever on her birthday and that is one of the reasons why they keep you inpatient during the first month so that they can get you IV antibiotics right away and prevent any kind of infection. She had a bunch of visitors and received some amazing gifts and treats.
Saturday she need a blood transfusion, but was feeling good for a long visit with close friends. We were thankful to have our family of 4 all together to watch the U of M game and cheer on the Gophers to a Back2Back Axe wins! So proud of Coach Fleck, Heather, and the entire Gopher Football organization.
Sunday she needed platelets again, but her hemoglobin rebounded nicely after her blood transfusion on Saturday. She cleaned and organized her room and was able to get out of her room for a couple walks.
Monday she was so excited to have Paul Bunyan’s Axe for the day! Since she is inpatient she wanted to try to share it with other patients and staff. We found out there is only a small percentage of patients that are not on precautions (meaning most are sick with some type of virus they could spread and cannot leave their rooms) or are not receiving critical care. We decided to go to the Zucker Broadcast Studio and record a special segment on the Axe to share with other patients and families at the hospital.
Thank you so much to everyone who helped make Brax’s inpatient 13th birthday special. She could feel the love from the texts, videos, gifts, visits, treats, decorations, etc. Thank You!
Onto week 3. This week will get more intense again, but we are hopeful she responds well and no curveballs. Her hair is slowly starting to come out too, so if you were wondering (and many are, but haven’t wanted to ask until we bring it up), yes, she will lose her hair again…..she’s reminded us all the other day she hasn’t had a hair cut since 2018!
Thanks again for all the continued love, support and prayers. Nothing about this is easy, but all off the support makes it easier!