Catching Up

Please forgive my blogging tardiness! Monday Torie, Lexie, Mom and I went to the Stuff-Your-Own-Bear at the mall. Commander McGuire from the VFW gave Torie a gift certificate to make something cuddly to take to Minnesota. She saw the Snowman and it was a done deal. She stuffed it and made a wish on a star to sew up in it. She had a great time brushing it and picking out clothes to put on it. She was so much fun to watch! When her Snowman was dressed she went to see Santa. She didn't want to get too close but she was fine sitting on the arm of his couch. Maybe next year she'll warm up to him!

Tuesday was ERT #10, and, as usual, went great. She has had no problems tolerating enzyme. And she has had no problems with any of the antibiotics she's been on. It gives me such great hope that she'll tolerate chemo and transplant as well. She's one tough cookie, and she smiles and laughs and plays through it all.

Torie is no longer able to be on Scott's insurance, so Lexie put her on her's. Unfortunately, we now have to have a new case manager to give pre-authorization for transplant work-up and for the actual transplant. So Minnesota backed us off for 1 week while we start over. Hopefully it won't be longer than that. The new plan is to leave next Friday, the 11th and start work-up on the 14th. Exactly 3 months since we were there in September. It is stressful to watch more days go by. It's really stressful on Lexie. She had gotten use to the idea of saying bye, now she has to get use to it again. But we have to look at the silver lining...more time with family and friends, and more time to enjoy the warm weather. (Relative to Minnesota!)

I've gotten lots of requests to post where donations can be made to..so here it is. It's also on the sidebar. We are so appreciative and overwhelmed by the generousity that has been given to help Torie. "Thank you" just doesn't cover it, but Thank You!
Torie Brady Medical Fund, Grand Valley National Bank, 452 S. Maple St.,
Fruita, CO 81521

Up and Running

Torie's blood culture was negative at 24 hours yesterday. She was up and in the playroom first thing "ooking dinna" at the playkitchen. She ended up being the only patient on the unit so she had the whole hall to run. She hasn't had a fever since Friday night, so this morning Dr. Mike let her go home! Hooray! We're hoping she just picked up some little holiday-gathering bug and that her line culture stays negative. She finishes antibiotics on Tuesday, so hopefully that line is clear and good to go to Minnesota. Uncle Shaun went back to Fort Collins this morning. We didn't expect for him to have go to the hospital again to spend time with Torie. If all goes according to plan, we will spend Friday night at his house on our trip north. Please send those thoughts and prayers Torie's way...we are so ready to get started so we can get done!

We had a great Thanksgiving! I have so much to be thankful for...family, friends, and the ever-entertaining Tor-nado. She was fine at dinner Thursday evening; asking Uncle Shaun for "mo butta pease". That's Grandma's girl! Today she started running a fever so she went up to Peds for another blood culture. CRP and Sed Rate are both up so she's now an overnight guest getting Vancomycin again, as well as Rifampin. And they added Fortaz (another antibiotic) until the blood culture comes back. We have our fingers crossed that she just picked up a "bug" and that it's not another line infection. Hopefully this won't change going to Minnesota. We are also hoping to keep her central line at least until we get there and she can have a new one placed if we need to. Please keep your thoughts and prayers with her.

We hope you and your families had a wonderful Thanksgiving and are remembering how important you are to us. We appreciate you and are most thankful for you!

ERT #9

Yesterday was Torie's ninth dose of IV enzyme. Her lab work looks great...infection markers (CRP, Sed Rate) are all in normal limits. She is no longer on Rifampin, the antibiotic she was taking to prevent endocarditis, and she only has 1 more week to go on the Nafcillin. She takes everything in stride. When her antibiotic is hooked up she just tucks it in a pocket. And if she doesn't have a pocket, she puts it in her pants! Whatever works!

We heard from Minnesota today...Torie is set to go. Finally. We will leave here Friday, December 4th and get to Minneapolis on Sunday. She will start pre-transplant evaluations on Monday the 7th. These evals will be like the ones she had in September, and some of them will even be with the same doctors. It is so scary to think about all she has to go through, but the sooner she gets started the sooner she will be able to make the enzyme on her own. Well, with the help of her new cells!

ERT #8

Once again Torie did excellent with her IV enzyme infusion. Dose #8 is done. Her blood cultures have been negative since November 9th and Dr. Mike changed her antibiotic to Nafcillin. A lot less nasty than Vanco! We still have lots of doses to go...3 weeks from the last negative blood culture. So about December 1st. Her H&H are up to 10 and 30, and will hopefully continue to go up since we're not doing as many lab draws. It's nice to see her with a bit of color back in her cheeks. Every day we're hoping to get the call from Minnesota that it's time to go back and start stem cell transplant. It feels like the clock is ticking and we're doing nothing. Torie needs 10 to 12 doses of IV enzyme before transplant. Tuesday the 24th will be #9. She will get her weekly infusions while in Minnesota. What are we waiting for? The transplant protocol had some minor changes made to it. Any time there are changes in something like this, it has to go to Internal Review Board (IRB) and be approved. And so we wait. Please continue to keep us in your thoughts and prayers...at least for the phone to ring!

Chili for Torie

Today was the Chili for Torie fundraiser. Amazing the amount of generosity that has been shown to us. I don't have an official amount that was donated, but it's around $2500.00. Amazing. The support that we have been shown is even more unbelievable. There was a ton of chili entered and they were all delicious. First place was taken by my BFF Heather and then she turned around and donated her prize to Torie's fund. This whole thing was orchestrated by Stacie Schreiner (beautifully, I might add!) with help from so many of my other dear friends. JoAnn Ryan arranged for the VFW post to host this event and it was so appreciated. Torie was a little shy when she first got there and a little overwhelmed by so many people who were there to see her. But in typical fashion she warmed up quickly, especially when she saw Nick, Stacie, and her buddy Stacey Schmitt. She ran and played and ate a ton of chili. I think she tried all of them too.

When we learned that we would be going to Denver for weekly enzyme infusion, Tom asked me if we needed to move back to Denver. I quickly said no. The Grand Valley is our home and we have so much support here. This community, and the community of friends we have here, are giving and caring. A man walked into the VFW today, donated $50.00 and left. A family with a child who had stem cell transplant at 26 days of age came to lend their support and to let us know that if we needed help with fundraisers or just to talk to someone who has been through what we facing that they are there for that. Torie has rough times ahead. I can't imagine how hard it is going to be to watch her go through them. But I know that when we have bad days, I can look back at today and remember how many people care and are here for us. I thank you from the bottom of my heart for all that you do and for all that you are.

News of the Day

Torie was interviewed by Channel 11 News today to raise community awareness about Hurler's and the Chili for Torie Cook-off this weekend. It went really well, and Torie was - Surprise! - charming and sweet. We owe a huge Thank You to Lexie's friend Alex for setting this in motion, and to our dear friend Ken for all his follow-up work. To see the interview, click on the link at the right.