*BradynsBattle

Bradyn was released to go home to Florida and we finally made it after being gone for almost 6 months. On Day 96 the bell was rung at Halo House Foundation (actually so hard it broke!); we got the clonoSEQ biopsy results half way home during our drive and NO cancer cells were detected in his bone marrow We have to be back in Houston in a month or so for another biopsy and to start vaccinations. He is still at risk due to being immunocompromised, so prayers please that he stays healthy & out of the sun. For now we reintegrate and get settled back in to a new normal and wait for clearance to proceed with hip replacements, likely by end of 2025. God is GOOD Prayers going out to all of those we left behind in Houston. Thank you again to all of your support during this long journey! Hugs & positive vibes always,

~Heather Barone

 

 

Amazing news, Bradyn has hit some major milestones since transplant on 1/2/25. He was given outside/off the secure floor privileges for the first time since Christmas (he even got to enjoy the TX snow).  Bradyn was deemed "engrafted" on 1/17!  Engraftment refers to Alec’s donor stem cells successfully growing and producing healthy blood cells in Bradyn’s bone marrow. It signifies the transplant’s success, reducing risks of complications like graft failure or infections. Lots of love to ALEC!  Bradyn was discharged from the hospital yesterday! He lost 20 lbs over the month, but we are working hard to put back on that muscle. He is being monitored closely by the hospital now, but with God's grace he has moved mountains this past week and a half.  I'm a proud momma and we are both happy to breathe fresh air and get hot showers back at the Halo House Apartment. We know there is a long road ahead; staying in Houston for the next few months, but God is GOOD, Amen?!

Fyi I'm still working thru multi-platform restrictions, but hope you can enjoy this video of him thanking his nurses before leaving the hospital.  If you would like to request to be included in the private facebook group please include COE22 in your request since I don't know all of you personally, but I do hope to cross paths with each of you!  Love you all, hugs and positive vibes only.

 https://www.facebook.com/1074883697/videos/3996635527234108/

Post-Christmas Update:

As with any journey there will always be bumps in the road (especially in Houston); on the morning of admission 12/10/24, Bradyn woke up w/ a fever which was determined to be a common cold virus resulting in slight bronchitis.  He was admitted for 3 days to expedite his healing, unfortunately his transplant date 12/20 had to be delayed. 

As hard as I tried, the new clinical trial date did not work out due to the holidays/staffing at both MD Anderson and Orca Bio. Cancer does NOT wait for Christmas. So onward and upward! Due to the aggressiveness of his cancer Bradyn has decided to proceed with standard of care so as to not delay any further. Bradyn was admitted for day 1 of consolidation on Christmas day. He is currently finishing his 4th day of strong chemo where he needs to shower every 4 hours to prevent chemo burn on his skin. He is struggling with nausea, but still eating and walking laps. His brother/donor tested positive for RSV a few days ago but doing better, we are still waiting to hear from the team what this means for transplant date 1/2/25 (day 0). Given the change in protocol Alec will have to undergo surgery on 1/2 to harvest his stem cells. On another fun note I had to have an emergency appendectomy on Christmas eve, but doing well.  Thankful that Bradyn made me get it checked out at the ER, if I was at home I likely would've "sucked it up".  Is this a soap opera or reality, anyone's guess.  Hugs and positive vibes only,

~Heather