1 Year + 211
1 Year +211
Two years ago this week, after a two + month hospital admission, we went home with hospice to manage pain, with the goal to get to bone marrow transplant, being given the news that Tate would not survive without one. That was after years of fighting for and digging for the physiologic “why” behind all of Tates suffering. We thought we had found it. Tate’s Dr’s thought too that they had figured it out. Tuesday’s care conference revealed what my head already knew but my heart wasn’t ready to accept. A room full of Dr’s acknowledging medical limitations, using the word “failure” and offering condolences gives your heart no choice but to accept what I see in front of me everyday. Tate is struggling and it’s only getting worse.
We are out of options to stop what is the understood progression of either what is left of this MT8 in Tate’s tissues or what is yet something unlabeled that is attacking her little body. Tatum’s BmT Dr. said this appears to be what he didn’t think was possible with her. That transplant eradicated the cancer aspect (and more understood portion)of her disease but she has a process happening in her tissues that isn’t understood and it isn’t responding to immunosuppressants. Without getting into the medical specifics of why, we are stopping the IViG infusions and not starting a secondary immunosuppressant. I was told we should look into pain trials at the NIH and across the country, as well as what we can find in connection with chromosomal disorders and tissue mod. But pain trials and treatments are Bandaids. I pleaded for anything to try. But the red tape of medical ethics and insurance means you can’t just give chemo or other meds. With no understanding of the physiologic process, there are no labels. With no labels, there are no meds or honestly, trials. Tates disease can’t be looked up in a textbook. It’s currently taught through peer to peer inquiry’s and forums and honestly, because of really tenacious moms and providers willing to dig. And even in the known, Tate is an outlier.
We weren’t given a timeline or speculation of what the future will look like. Only that they recognize Tate is getting worse and said they will support her care here in working with trials at other institutions, meaning we don’t have to stay out of Colorado during the whole time. Currently Tates organs are fuctioning. Things can change quickly but for now, we are focused on trying to control pain. And as another week slips by, still waiting on admission for the trial. She has a brain MRI coming up which could show nothing or change everything.
Currently, it’s a little hard to breathe as we try to find footing for a path forward. We know this path is already paved. Finding it isn’t always easy .
How to help? Please LIKE, FOLLOW (keeps her page in the feeds) and SHARE this page. Connections are everything in the ultra rare medical world. Tate is truly 1 of 1. We need help to connect as you never know the impact a little page can have and we are always searching for others with similarities to Tate. Honestly, Tate had the option of BMT Because of a couple of those connections Kristin & Tina
And for those sharing/selling supplements of all sorts. We love them too! This little lady is on all the things and can’t handle swallowing anything more. We love you & thank you for caring so much.