Post BMT +149
+149
Day 8
Sometimes I think if I wait a day I’ll forget the bad day I was trying to skip and have a better one to report on the next day. Today was not that kind of a day.
We are seeing neuropsych symptoms continue to worsen. Many hours today were spent trying to console a terrified, hurting, confused and sobbing Tate. It’s exhausting and traumatic for both those witnessing and those just hearing, but especially for those who love her. Lots of empathetic, tear filled eyes today with a lot of helpless bystanders.
Neurology was here yesterday and again today. I believe the aim for the LP is Monday. A scope was briefly discussed as Tates GI symptoms also continue to worsen. Lots of teams have to agree with the plan and this one didn’t pass so it’s a watch and wait on the scope.
I’m so thankful that both keira and Tim were here today. Tim for the morning before his meeetings and Keira spent most of the day with Tate and I. I’m a little heartbroken that Keira has witnessed so much with Tatum. It doesn’t seem fair, yet I am so thankful for her. I’m so thankful for my boys too. Both were called during hard moments today, put on speaker, and both jumped in to verbally support. Lots of “I love yous” and “You’re okay Tatum,” to help in the way they could. All 3 love their baby sister and I’m so thankful for them all. The big 3 have had to be far too independent, far too early, for far too long. But I see God using it as they grow into their adult lives. They are all fully loved.
I can’t put into words the defeat of this past week. We were so hopeful that the brain portion of Tates disease(es) would be cured by transplant. It is becoming more evident everyday that this isn’t how things are turning out. We are feeling heartbroken and honestly, just physically Ill. The things I’ve pleaded with God for today can’t even be repeated out loud. I know he holds her, but my heart is screaming otherwise. She is not the only victim in this journey. Our entire family has been ravaged by this disease. The scars are mostly invisible, but they run deep.