T+193 A New Diagnosis

Yesterday the heatwave that has been hanging here in Minneapolis finally broke! The high was only 79 with 60% humidity. Much better! We were even able to go outside and play for a while. Torie even had company come to visit in the playhouse...Jerry! She thought it was so funny that Jerry was in the house. She fixed him "suppa" and he seemed a little confused that there wasn't anything on the plate. He did give it a sniff, though. Torie made it up all the steps on the "tatterpuller",
and ended up in a puddle at the bottom of the slide, which made it all the more fun!

This morning we went to see Dr. Orchard, and then we had an appointment with Dr. Burke. Torie's counts are down quite a bit. After she got blood Tuesday, Wednesday her hemoglobin went up to 10.1, but Thursday she was already down to 8.4 and her platelets dropped to 75. They've been over 100 since the end of March or so. Today she was down to 7.2 with a platelet count of 83. Dr. Burke feels that with a combination of Coomb's positive Hemolytic Anemia, and now ITP (Ideopathic Thrombocytopenic Purpura), she gets the new diagnosis of Evan's Syndrome. Thank goodness, because it's much shorter to type. Here's a link for more information if you feel like reading more about it - http://evanssyndrome.org/ . So far Torie's WBC's are okay, so hopefully that doesn't become involved also. His plan of treatment for her is pulse steroids (high-dose Decadron 4 days a month for 6 months) AND Rituxan. He wants to do both therapies because he thinks with having Evan's Syndrome, she won't respond to just steroids. Rituxan is a chemo-like drug that she will get infused once a week for 4 weeks. Thankfully, it doesn't have a lot of the horrible effects like mouth sores, nausea, vomiting, and all the others. And it won't make her beautiful red curls fall out, either. So, that's the plan. Torie's new MediPort was de-accessed before we left today, and she got to take a REAL bath tonight. Bubble-blowing and swimming and all....she loved it! (And yeah, I know someday she's gonna hate me for the video.)

Please send Torie some extra prayers and happy thoughts as she takes this newest detour. Our sweet girl needs a break. But, in usual Torie-style, she is bouncing along with her same grace and humor that she's always had. And while I'm asking for prayers, please send some to our dear friend Joseph and his family. He has been in the hospital for almost a week this time, and the docs are having a hard time figuring out what is making him so sick (well, something besides BMT!). His mom Kim has become one of my closest friends, and we think Torie and Joseph are texting about who should do what next. Naughty children! As always, we appreciate all you do...we miss you and are sending you happy thoughts from Minnesota, and we are praying for Vic-Torie!