Yesterday we met with Dr. Burke, Torie's new Hematologist. His plan for treating her Hemolytic Anemia is to try "Pulse Steroids." She will get 4 days of Decadron, then be off for 28 days. This will hopefully get rid of some of the antibodies that cause her blood to be destroyed so quickly. Hopefully after 4-6 months of this, she will be able to be off them for good. Unfortunately, he wants her to stay here for the first month to make sure she responds to this therapy. If not, he told us he has a whole bag of tricks to look into for another type of treatment. We have an appointment to see him again on Monday, and to have more lab work done. Then we will see Dr. Orchard about her engraftment levels. Torie is officially on her CSA wean. She is on 40mg twice a day, next week she goes to 35mg, then 30, and so on. Maybe once that starts coming down, engraftment will go up. In the meantime, here we are. Just another day on the BMT roller coaster. The Children's Cancer Research Fund has a quarterly magazine called "Butterfly". The summer issue (with a darling picture of our friend Joseph on the cover!) has a quote from Dr. Tolar saying, "Ninety percent of my work with these children is fixing the damage I've done with chemotherapy and a BMT." Boy, is that the truth!
Torie is actually feeling better than she has in about 3 months. It doesn't seem like she should have to stay when she looks like she's doing so good. But we're fortunate to be in a place where they have all the experience that she needs, and we're lucky to be at Ronald McDonald House. There are so many people who are much worse off, but we're still disappointed and homesick already. Please send extra prayers that the "pulse steroids" work, and that her tired little furry body responds well...Vic-Torie!
I'm sorry to hear that! Hopefully it will go by quickly, and there's no better place you could be for her. Hang in there, again!!!
ReplyDeleteDang, the roller coaster continues. Some day soon Torie, let's all do 'roller toaster' rides together! Well, almost all of us, Mama Grand can take pictures of us as we fly by.
ReplyDeleteHey Grand Kid, I think about you lots and I sure wish you were all back home here in Colorado. But, you are where you need to be now.
I sure love you and your Arizona cousins. Grand Kids!
Papa Tom
We hope the Decadron fixes the issue and you don't need any of those other tricks. Torie, keep your spirits up as best you can. We're praying that this month passes quickly and that God will touch your body while you are waiting in Minnesota.
ReplyDeleteOh so sad... That stinks, but it is good that she is where she needs to be... :( Man I'll keep the prayer coming for sure.
ReplyDeleteYeah for the CSA wean and boo for the month away from home. Hopefully this treatment will work and in a month you will be on less medicine and go home as new person. We miss you and your grandma's already and hate that you have to stay so long. We are glad you will be at the RMD house and that you are feeling better.
ReplyDeleteLots of love,
Josiah and family