T+268 MOMMY!

Lexie got here Thursday afternoon and she and Torie were SO happy to see each other!  Mom and I were super-excited, too!  We have been having loads of fun being together again.  Lexie's first night here was the RMH Halloween Party.  Guess who forgot to take pictures?  I bet you only need one guess.  We had a great time on scavenger hunts, in the haunted house, and trick-or-treating.  And Torie made an adorable Annie! 

Friday we went to Mall of America and our first stop was Build-a-Bear.  We had seen the perfect bear when we got here in August.  It has almost-red curly fur (sound familiar?) and stitched on ears, paws, and heart.  Seems fitting, since they've patched Torie together here.  She and Lexie helped stuff and sew it, then they gave it a bath and brushed it.  Then was the most difficult part...the birth certificate.  After some name-tossing, it was amazingly simple.  Annie-Bear.  What else?




Torie and Annie



After Build-a-Bear, we went to the Aquarium.  It's right in the mall.  We saw all kinds of fish, sharks, rays, and sea turtles.  There is a huge walk-through tunnel, and Torie was amazed that we weren't getting wet! 

This afternoon we went to Punch Pizza for dinner, and came back and had a quiet evening.  We're all pooped out from the excitement.

Torie's hemoglobin on Thursday was 10.1, by the way!  Platelets dropped more, down to 52, but her WBC's were up to 2.5.  We're just taking one day at a time and not making any plans.  Torie loves messing with my plans.

Grammy Bonnie's body was laid to rest today, and our hearts are with our Arizona family today.  We wish we could be there with them, but hopefully it won't be too much longer until we can all be together to celebrate Bonnie and her life.  We love you all!

Thank you for all your happy thoughts and prayers.  I will never be able to express what you mean to us.  We miss you all, and are grateful for your company while we wait for Vic-Torie!


Just a perfect seahorse.




Torie loved walking around the jellyfish display, and so did we!



T+264 Up Up And Awake

Torie has decided that the best time for napping is at night.  Like from 9 to 1.  Yep, PM to AM.  Everyone was amazed at Clinic yesterday morning that we were all so goofy and giggly.  It was really just delirium.  Torie's chemistry's remain perfect - WNL - but those counts are dropping again.  Not a ton, but enough to worry me.  WBC's went to 2.2 with an ANC of 1300, and her hemoglobin dropped to 9.4.  Certainly not nearly as worrisome as 4.6, but not going the direction we were hoping for.  Dr. Orchard wasn't overly worried, and the plan is tooooo.... you guessed it!  "Just keep an eye on her."  Our eyes are tired, but that could be from the lack of sleep! 

If you've been watching The Weather Channel at all today, you've seen we've had some wind up here.  This October was the driest one on record in history, but I think it's gonna catch up in the next couple of days.  The prediction for tonight is rain turning to snow.  I'm afraid it's just a taste of what we'll be seeing soon.  Who'd have thought that coming for  ONE WEEK  in August that we'd be here for snow?  Dang, it's been a long week!  Thanks for keeping us in your thoughts and prayers, and for your support.  It really does help get through the long lonely times while we're waiting for Vic-Torie.

T+261 Staying In



It was a rotten day to go anywhere, so we stayed in and had pajama day (and laundry, cleaning, markers, paint, books, etc.).  We got a notice from the office yesterday warning us that not only were the U of M Golden Gophers (yeah, really!) playing football today, but that President Obama was speaking on the mall at the U also.  Between these 2 events, more than 50,000 people were expected to be on Campus today.  The streets were jammed all day!  So I decided to bore you with pictures.  On second thought, you probably will prefer them to my mostly mindless drivel!



I just got word that Grammy Bonnie made it to the top of that mountain she was climbing and is now at peace.  Please send extra prayers to our family, especially Heather, Colby, Brielle, and Cooper, and Erin, Jason, Chase, and Makinley.  Bonnie was a great Mom, Grandma, and Friend.  She will be so missed, but she will live on through them. 



The dining room and living room with sliding glass doors to the balcony.




The kitchen is behind the staircase by the front door.  It's too small to get in the frame of the camera!



Torie's cards!



From the attic...where they keep me.







My attic room.



The balcony.





Torie and Mama-Great's room.  The bathroom is just off the bedroom.



House 3.  Our old room is the bottom right square.  Now we're the top triangle.

T+260 Climbing Mountains

 Torie's been hard at work with PT...climbing mountains!  She loves her therapist Katie (in the gray and black) and does more for her than any one else.  Her therapy sessions are an hour long, and by 45 minutes, she's wiped out.  She had gotten so weak, but we are seeing improvement every time we go.  All of Torie's therapies are in the Mayo building, and on therapy days Torie says, "Mayo Playo day!"

Yesterday's Clinic went fairly well.  Her chemistry's are all normal...no stars!  (Abnormals are asterisks *)  Just like Josiah.  But her hematology results are still wacky.  Her hemoglobin stayed the same as Monday, 9.9, but WBC's dropped a tad to 2.3 with an ANC of 1300, and her platelets dropped from 78 to 70.  She's been running a low-grade fever again and just seems to be kinda puny again.  I hope we're not going to start November like we started September.  We have Clinic again on Monday, so we'll just have to wait and see.  I hate waiting.  This is one mountain we don't want to have to start from the bottom of again.

Yesterday was our sweet Cooper's 5th birthday, and I'm sorry I didn't get this posted yesterday.  Thank goodness they are used to me always being late.  Speaking of climbing mountains, Grammy Bonnie is in ICU, and she needs all the prayers we can send her, so please keep her in your thoughts.  We have been lucky enough to see Wyatt and Nicole and Todd the last 2 weeks, and they are heading back to Florida tomorrow.  We will miss them so much, and wish them safe travels and speedy healing.  Thanks again for all you do - we appreciate it!

T+256 Better Yet!

Como Park

Today Torie's labs are better yet!  Hemoglobin is up to 9.9 (we haven't seen that since July) and platelets almost doubled - 78.  Her WBC's are the only thing that dropped; they went to 2.4 with an ANC of 1400.  All of her chemistry's are WNL - Within Normal Limits - and I'm thrilled to be able to finally use that abbreviation!  She is so WNL that today they stopped her Magnesium and her Bumex.  Her weight is down to 16.0 kg, and her blood pressure is down to the low 100's/50's, so they also stopped her mid-day dose of Labetolol.  Now she only has 7 meds twice a day, and it feels like we're actually getting somewhere.  Of course, Mys-Torie can always change things around more quickly than we can keep up with her.  We'll check labs again on Thursday to make sure she's not pulling any of her tricks.  The rest of the week is filled with the T's...PT, OT, ST, all the T's.  We'll keep you updated on how it goes, and in the mean time, thank you for all your prayers and happy thoughts!  We miss and love you all!   

T+255 Uncle Shaun

Shaun decided to come up to visit us for his birthday and Torie was so excited.  She wanted to have birthday cake and candles, so we got a cake for her to decorate for him.  She picked out pumpkins and spiders to put on it, and she loved putting the candles on.  When she says "Shaun" in Torie-speak it comes out as "Wan."  So for a few days before he got here, I started telling her to call him "Obi Shaun."  When he got here from the airport, she said, "Hi Obi-Wan!"  Perfect!  We had a great time with him; Friday we went to Como Zoo, and yesterday we went up to Lake Superior.  It is so enormous.  It's just like looking out at the ocean.  Definitely something to see.  Shaun headed home today, and we miss him already.  But we're already counting the days 'til our next visitor...Mommy!

Tomorrow we go back to Clinic to see how counts are hanging.  Hopefully they're staying up and we're a few days closer to going home.  Thanks for staying with us while we wait and hope and pray for Vic-Torie! 

T+251 Lion Around

Today two tiny lion cubs came to visit Ronald McDonald House from a zoo in northern Minnesota.  They were born September 11th, and their mom abandoned them, so they are bottle fed.  Torie (and the rest of us) were quite fascinated with these little-bitties.  We were able to pet them and they are so soft and fuzzy.  It is amazing the things that the House staff come up with to keep us entertained.  The other exciting event of the day was the Flu Shot Clinic.  They set up the clinic right in the office, and they were free of charge.  Even better, we got lollipops, BandAids, and T-shirts.  There are a whole bunch of us sporting "I Got My FLU SHOT Today" stickers.  Okay, maybe flu shots aren't really exciting, but the services that they provide here are unbelievable.

Even more exciting, Torie's counts are going UP!  Her hemoglobin went from 8.6 on Monday to 9.4 today, and platelets are up to 40.  Her WBC's came up from 1.8 to 2.7, and her ANC went from 1100 to 1900.  The docs aren't sure if the Rituxan finally kicked in, or if the burst steroids are responsible for the increase in counts, but we'll take it!  If her counts continue to go up, it doesn't look like she'll need to go on 6MP (chemo).  We're are cautiously optimistic that we may be able to head home mid-November.  Of course, in the BMT world everything can change faster than Colorado weather!

Cute little critters.  I always knew playpens were for animals!

This is Lauren (in the black - not the one with the bottle).  She is one of Torie's favorite people here.

Day 250!

There's not much news here, and that's sometimes the best news!  Torie's hemoglobin and platelets were up a tiny bit on Monday and her WBC's were down a little bit more.  Otherwise her labs look good.  She is still on ursodiol to protect her liver from the voriconazole, and today we went down on her CSA dose - to 30mg twice a day.  The plan is to have her off of it about the 9th of November.  She is working really hard with PT.  She has lost so much strength and she is pretty weak, but every day she is doing a little more.  We found this pool for her (Hooray summer clearance!) and she loves it.  It's out on the balcony, and yes, it is empty.  She has to step in and out to get rings and balls, and sitting on the sides is a good workout for her tummy muscles.  She can also use her wrists throwing rings.  Our new room has a loft (Torie calls it my cage!) with a spiral staircase so we can work on stairs, too.  She's got a long way to go, but we're still taking baby steps.  She's a hard worker and she'll get there!  Vic-Torie!

T+247 Pajama Day!

 

As long as it has taken me to finally get this changed, it's gonna take me twice as long to update you!  Torie was discharged from the hospital last Thursday afternoon after being there for 4 weeks.  Mom and Great-Karen were so excited to get her back to the House.  In the middle of the excitement, they were also in the process of moving to a bigger room (more on that later) and getting the old one cleaned.  I was at sea that day, and on Friday we landed in San Diego.  When I called, Mom could hardly talk in complete sentences - she was that excited.  Dr. Orchard called me just when we were disembarking, and he didn't sound too sure that she would be able to stay out of the hospital.  And he was right.  Friday night Torie started having trouble breathing, and she was throwing up.  I had Mom call the BMT Fellow on call, and they wanted to see her in the ER.  Her chest XRay was worse, and her fever went up to 103.7.  So yes, she was re-admitted. (512 this time.  At least they got a different view.)  Tom and I left San Diego Saturday afternoon, and got back to Grand Junction about 9:30.  I left Sunday morning to head east.  Torie had a chest and abdominal CT that afternoon that showed bilateral pleural effusions.  She was needing more oxygen, and still dealing with high blood pressure issues.  Instead of draining the effusions they decided to treat them with Lasix (diuretic) and antibiotics.  She had been started on atenolol (a beta-blocker) for her blood pressure.  But at least her counts were fairly stable.  I made it to Council Bluffs, Iowa, Sunday night, and I got in here about 3:30 Monday afternoon.  I was so relieved and happy to be back...and it was great to see Torie!  She was happy to see me too, which was even better!  Mom stayed with Torie Monday night so I could get caught up a bit (and try to figure out what state and what time zone I was in).  She did pretty good overnight, but she still needed oxygen.  Tuesday morning Great-Karen went back to Illinois, and I went to rounds.  I stepped out of the room with my arms up in a V (for Vic-Torie) and said "Ta-Da!"  They pretended to be glad to see me, and told me "Welcome Back!"  I replied, "Thank you. And now YOUR vacation is over.  I want her Atenolol changed to Labetolol 35mg 3 times a day, and Lasix changed to Bumex 0.5mg twice a day.  And tomorrow we'll go back to Ronald McDonald House."  Dr. Lund was quite agreeable, and also wanted to do a sleep study.  By that afternoon, her blood pressure was down in the low 100's, and her O2 sats were 98% on room air.  She had no problems with the sleep study, she didn't need oxygen, and her blood pressure was even down in the 90's a couple of times.  Wednesday morning when Mom called to see if we needed anything, Torie yelled "Mama-Great, bring the roller (stroller)!" and just laughed!  We got back to RMH about 11:30, and she's doing great.  When we went to Clinic yesterday, she didn't even need the blood that they had set up from the day before.  Her counts came up a little - hemoglobin from 7.2 to 8.1, and platelets from 27 to 31.  Her WBC's are back down in normal (for Torie) range... 2.3 with an ANC of 1600.  We got to have today AND tomorrow off.  And let me tell you, we are enjoying it!  It feels good to be back in our routine. 

Thank you so much for all the well-wishes on our cruise.  I enjoyed spending time with my husband and the Schmitt's so much.  I slept. And ate. And slept.  But my thoughts were here with Torie.  I'm so grateful that Great-Karen was able to help Mom so much.  I felt horribly guilty being away - my Mom needs a vacation even more than I do, and to spend time with her husband.  My Dad misses her, too.  It's strange to think about how changed our lives are since we booked this cruise last June.  That seems like a whole lifetime ago.

Thank you also for continuing to follow Torie's Story through the changes.  I started this blog not only to keep people up-to-date on Torie's condition and progress, but more importantly so that someday she can read it and try to get an idea of just how exceptional she is.  It was never meant to be a forum for venting inappropriate or inebriated comments.  It continues to be your happy thoughts and prayers and good wishes that are pulling all of us ever-closer to Vic-Torie! 

T+245 Goin' Private

Thank you to everyone who has sent their addresses...I'm not ignoring anyone! After just arriving, I simply haven't had a chance. Hopefully I will get to it this weekend. Thanks for being patient!

New Settings

I'm so sorry but I now have to make this a private blog. If you would like an invitation to view this, please email me at ta2dytrsh@bresnan.net.