T+208 Minnesota State Fair

Yesterday we went to BMT Clinic and found out that Torie's WBC's dropped to 1.4 with an ANC of 900. These counts haven't been this low since March. Dr. Orchard isn't sure why they are down, but it could be part of the Evan's Syndrome that she is dealing with. She got an infusion of G-CSF(medicine that stimulates the one marrow to produce more white cells) so hopefully Thursday these numbers will be higher. The good news is her hemoglobin came up a little, and so did platelets. For some reason she has been having pain; we think in her legs and her hips. She hasn't wanted to stand up or walk, and when she does stand, she shakes and cries. I asked Dr. Orchard if we could try some codeine because plain Tylenol didn't seem to be cutting it. I gave it to her when we got back from Clinic, and after her nap, she walked! Hooray! We're still not sure why she hurts though. She had hip and knee X-Rays done, but there wasn't anything that jumped out when Dr. O looked at them. The roller coaster ride continues...
Today we went to the Minnesota State Fair. Emily, the ChildLife Specialist at Chemo Clinic gave us tickets last week. We didn't want to go on the weekend, and today was supposed to be a little cooler. We had a great time, and this fair is HUGE. It covers blocks and blocks. And I can't imagine how many people would be there on the weekend. There were plenty today. We saw baby pigs, calves, sheep and horses. Including the Merry-Go-Round ones. Torie does love Merry-Go-Rounds, as you may have noticed.
They even use horses to make ice cream. John Deere engine horsepower, that is. The engine is hooked to the cranks on ice cream makers. Pretty nifty, huh?

We walked around for about 3 hours and saw just a little bit of all there was. Not only were we tired, but this little fair-girl had the right idea...just take a nap!

Thanks for continuing to follow with us, and if you can, restart the prayers for those cells to grow and engraft. It feels like we've taken a huge step backward with having G-CSF again, but we know the power of prayer and happy thoughts. Grow cells, grow! Engraft! Vic-Torie!

T+205 Happy Birthday, Cowboy DaNNY

Today is Cowboy DaNNY's birthday. He is 7 in Heaven. Even though he is not here for us to celebrate with him, today will always be his birthday, and we will always celebrate him on this day. We met in the Courtyard with balloons and markers. Joseph and Kim and Pat and Kathy, Baby Sydney and Traci, Nancy, and Trevor, and Torie and Mom and I, as well as some others that joined us. We wrote Birthday wishes to DaNNY on our balloons, and we had balloons for some of our friends who aren't here - Diedre and Liam, Josiah and the rest of the Carman clan, and Gracie, Alyssa, Laura, and Dennis Larson.




We sang Happy Birthday, and we sent our balloons to heaven for DaNNY. Although we miss our friend so much, we know that all of our kids here at Ronald McDonald House have a special angel watching over them.
Our hearts are breaking for Duane and Cyndi and Michael today, but my wish for DaNNY's birthday is that they have some comfort in knowing how many lives their family has touched, and what a gift they shared with us. Happy Birthday, Cowboy DaNNY. We love you!

T+203 2 Down, 2 To Go

Today was Torie's second infusion of Rituxan and she tolerated it with no problems. I hope we will start seeing some results soon. Her labs today weren't the greatest. Her WBC's have dropped to 1.7 with an ANC of 1300. They haven't been that low for months. She's been running a low-grade fever, and acting achy and uncomfortable. Dr. Burke thinks she's maybe got some kind of virus and she's using up some of her WBC's fighting it off. Her hemoglobin today was only 8.0. She's pale, but she's still spunky. Her platelets are also down to 96. All of these may be because of Evan's Syndrome. C'mon Rituxan! We are so wanting this to work to she can feel better and we can come home.

Our sweet Baby Sydney is done with dialysis! She and her family have been fighting for so long, and I know that your added prayers definitely helped. We are overjoyed for them. I think they hold the current title of "Most Senior Residents" here at the house - they've been here longer than anybody else that is here right now. They are so anxious to go home. Please send prayers for our friend Joseph and his family...he has a line infection now. Joseph and Torie think that their competition is quite amusing, but we are all getting a little tired of it. And if there are any prayers left over, Torie could use a few too. Please pray that her blood stops fighting itself and that her counts will go up and for Vic-Torie!

T+200!

Once again, I apologize for not updating sooner. By the time we got done with our exciting weekend, I was just too tired. Saturday we decided to go somewhere. Anywhere. It's hard to just stay here all the time. Torie was feeling really good, and the 'roid rage was dissipating. We decided to go to Pepin, Wisconsin. What's in Pepin, Wisconsin, you ask? The Little House in the Big Woods. Birthplace of Laura Ingalls Wilder. I have been a huge "Little House" fan all my life. So is Lexie. In fact, the first book Lexie ever read by herself was "Little House in the Big Woods." I figure Torie should start early too. In January, when we made a trip to Wisconsin with Diedre and Liam, I got close to Pepin, but weather wasn't permitting. The drive from here took us along the Wisconsin side of the Mississippi, and it is beautiful. Lush green trees so thick that you can't see through them, and so much ground cover that you can't tell where it ends and the trees begin. Winding roads through hills that suddenly open up into farmland with picturesque farms with quaint red barns and silos. We went to the very cute town of Pepin, toured the museum, and went to a restaurant on the banks of Lake Pepin. It happened to be the one place with a parking space, so that was how we chose it. We had a delicious lunch (stuffed mushrooms sauteed in white wine on linguine) and the couple who was sitting behind us commented on how well-behaved Torie was. He felt Torie looked familiar, and the conversation turned to how she has Hurler's and had been through BMT. He said that with a diagnosis of Hurler's she would have a lot of orthopedic surgery ahead of her (which we already knew), and since he is the Chief of Staff of Orthopedics at Shriner's Hospital, he would like to help her. He gave us names and numbers of his secretary to start the process to get her to Shriner's and start evaluating her. Talk about the right time and place. The Heavenly Father really does have a plan, and he certainly does work in mysterious ways.

After lunch, feeling totally elated by our happenstance meeting, we went to the Little House in the Big Woods. Suddenly, Laura's life became real to me. I only wish Lexie had been there. It was so cool! Someday, Torie will read all those books and say, "My Grandma's took me there when I was little."

We left Pepin and went across the river, back into Minnesota to the town of Kellogg. There is an amazing toy store there called Lark Toys. They have everything! Including a hand-carved carousel. Torie and I had a great time on the otter. She loves Merry-Go-Rounds!

Today we had Clinic early, and we celebrated Day +200 with blood. Torie's hemoglobin dropped to 5.3, and platelets are down to 143. Dr. Orchard thinks we might need to start IVIG, because rituxan can make those levels drop, too. It is often frustrating when one med makes something drop another thing, and so on. Torie is feeling good though, so that makes things easier. She got a package from the Beckerman's today. They put in Beanie Babies that Uncle ("Auntie") Jason collected for years. Makinley sent her a butterfly named Flitter, and the poem on the tag is "I did not know what I was to be/ Covered in fuzz, it was hard to see/ Now a butterfly, what a beautiful sight/ On silken wings I take to flight." And Chase chose a lamb whose poem read "Fleecie is cuddly and soft as can be/ Give her a hug and then you will see/ When you hold her close to your ear/ You'll hear her whisper 'I love you, dear!'" From Erin and Jason was an angel bear, Halo, whose tag says "When you sleep, I'm always here/ Don't be afraid, I am near/ Watching over you with lots of love/ Your guardian angel[s] from up above!" I can't believe how appropriate they all are. We are blessed by wonderful family and friends. It is with support from all of you that we know we will have Vic-Torie!

T+196 One Dose Down...

and 3 more doses of Rituxan to go. Dr. Burke said today that if Torie doesn't have any other tricks planned, and if she responds to pulse steroids and Rituxan like he expects her to, that we will be able to go home about the 16th of September. Hopefully, Dr. Orchard will agree with this plan! We got to the Chemo Clinic at 10:30 this morning. Torie was a champ about having her MediPort accessed. We put EMLA (type of lidocaine) cream on about an hour before, so her chest was good and numb. Her labs were pretty unchanged...hemoglobin only dropped to 7.1, and platelets were up to 160. We were really lucky to get a bed in the infusion room, and they have DVD players and toys. It was a super-long day, with only about a 15-minute nap. Torie was so tired of being there, and about 4:oo she said, "Mama-Cheryl, take Torie back to Rodonald house now? Please?" She still had about an hour and a half left of her infusion, and it just broke my heart. But we made it back in time for spaghetti and meatballs!

She didn't even want to go to the treehouse playroom after dinner. She hasn't been sleeping well since she has been in steroid hell, but today was her last dose. Hopefully by tomorrow evening she'll be back to her charming, sweet little self. Thank you for all the prayers. We know that they are heard and are getting us closer to Vic-Torie!

T+194 One Year

It was one year ago today that Torie and Lexie and Shaun and I were at Denver Children's Hospital and Torie's diagnosis of MPS 1 was confirmed. Dr. Thomas and Janelle felt our best option was with Dr. Orchard and the U of MN. We were shocked. How could this perfect baby have such a horrible disease? And one that would require such drastic measures just to TRY to keep her with us? It is still surreal, even after a year. She was never sick. She was a happy, healthy baby. This post isn't so much about Torie as it is about me. Oh, the difference of one year. I have tried so hard to keep this blog about Torie. Tonight I'm going to deviate a bit. This last year has been the ultimate roller coaster. A few times are exhilarating, but for the most part, I just close my eyes, hold on until my knuckles are white, and scream sometimes. We have been to the depths, and yet the Heavenly Father lifts us up later. I have found the meaning of friendship, love, and faith. Yes, me. I am so blessed. Torie is still here - furry, funny, and always my sweet puppy. My husband has (and will) continued to support everything I do. Heather and Erin (and Grammy Bonnie) and their families are always near with love, support and prayer, as are the rest of our huge, fabulous Flake family. I am so proud to be part of them. My brother, Shaun, is my rock. He gives me strength, as well as a great deal of sibling rivalry, to push on. He has rearranged his life to be with us. I am grateful to my dad, because I get from him the bullish attitude to put my head down and plow through. How many people my age get to live with their mom? I have been able to for most of this year. She loves her girls - me, Lexie, and Torie - so unconditionally and she moves heaven and earth for us and she never gets tired. My friends have given me sanity. I miss them so much when I'm away, but they are always there for me. Wherever I am. The friends I have made on this long strange trip will forever affect me and we will always be part of each other's lives... Torie's Sweet Strong Si and the rest of our Tennessee family. Diedre and Liam. Kim and Joseph and Pat. The Hansen's and our dear angel Cowboy Danny. The Larson's and our sweet Baby Sydney. And our Hurler family, especially Rylie and Wyatt. Oh, my family and friends, thank you so much for all you have given to me and to my sweet grand, Torie. I am forever in your debt for all you have done over the past year. Torie has so many hurdles and challenges ahead of her. But, with the grace of God and so much support and love, we will have Vic-Torie!

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!

T+190 Stuck in Minnesota

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!

T+188 Fourth & Final ERT

Today Torie had her last dose of Intrathecal Enzyme and she did great! She also got her Hickman line pulled from the right side of her chest (the little red dot) and she had a MediPort placed in the left side. It is under the skin and accessed with a needle when we need it. She won't have lines hanging down anymore, and best of all, she can go swimming. Hooray! She woke up easy and we were back at RMH by 1:00. After a hot dog, some chips, and milk, she took a nap and we had an enjoyable evening watching a test pattern on TV. Really. Torie told me to change the channel, and she'd say, "Not watch that. Change a channel." When we got to the test patterns she said "This one. Torie like the green one. Mama-Cheryl you like pink one. Mama-Great you like blue one." So that was what we watched until Mom and I were laughing so hard we couldn't see. It probably was the best show on.

We got some of Torie's lab results back today. Her CD3 engraftment level has dropped from 59% to 48%. Not sure why. I don't know if her steroid wean has dropped it, or maybe the Hemolytic Anemia. Speaking of which, she is destroying her red blood cells pretty quickly now. Tomorrow she has an appointment with Dr. Burke, a Pediatric Hematology Oncologist. After that we will meet with Dr. Orchard and Theresa to see what the next plan of treatment will be. Please send extra prayers for Torie that this may be the last bump in her road. It sure feels like she should get a break soon so we can get back to Colorado sooner instead of later. Thanks for all you do for helping get to .... Vic-Torie!

T+187 Mo Games!

Torie started out today's appointments with one of our favorite friends, Dr. Julie. She is a neuropsychologist, and has done all of Torie's testing. We were scheduled with someone else, and were pretty disappointed. Since transplant, Torie has been slow to warm up to new people. And with her blood counts being so low, she's not exactly perky. Julie is so good with Torie and Torie loves her, and we didn't think today was going to start off so good. But lo and behold, our Dr. Julie came and got us for testing...Hooray! Torie did much better than we thought she would, and she lasted for about an hour and a half. I'll let you know results of her testing when we get them. After playing loads of games, we went to the BMT Clinic and Torie got some PRBC's(Packed red blood cells). About an hour into them, she sat up and wanted to eat and felt much better. She tolerated them great...of course! We were only 15 minutes late for her echocardiogram, and I don't think it showed much of anything new - just her small pericardial effusion that she's had since April. She is now off all her diuretics, so we'll have to keep an eye on it.

After dinner tonight, Torie and Josiah played together for about an hour. He is leaving in the morning to go home. We're so sad it was such a short visit - we love our Tennesse family so much! - but a short visit is better than none. We're already looking forward to February when we'll all be back for our 1-year checks. Please send them more prayers and happy thoughts for safe travels. Torie goes to the Operating Room at 7:30 tomorrow morning. She's getting her last dose of Intrathecal Enzyme, and she's getting new central access for blood work and medicine. Send some extra prayers her way if you can, and I'll update tomorrow night. Thanks for all you do for us...love and hugs to all! Vic-Torie!

T+186 Back at RMH!

Our flight left Grand Junction Saturday morning at 6:00. We were all up at 4:00 (A.M.!) to get ready to go to the airport. Torie was so excited about going to Minnesota that she didn't go to sleep until 11:00 Friday night. She got a nap on the flight from Denver to here, and Ronald McDonald House had a room for us when we got here. Hooray! Torie was so excited to see the House, and Jerry, and the treehouse...she played like she hasn't for months! Sunday she played the catch-up-on-sleep game...she got up at 10:30 in the morning, and took a nap from 1 until 4! And she wasn't the only one! Josiah and Rachael and Jim got here Saturday afternoon and boy, it was great to see them. Josiah looks awesome. He's running, and climbing, and starting to talk. He's so healthy and perfect - I think he should be the BMT posterchild...this is how transplant should be! Then we got to see Kim and Pat, Joseph's Mommy and Daddy. He was discharged from the hospital yesterday, but we haven't gotten to see him yet. But we can't wait! Today we saw Baby Sydney, and she looks so good. She grew up while we were gone though...it won't be long until we're calling her Big Girl Sydney! It really is like coming home. We are so blessed to have this big family here as well as in Colorado.

We started our week of appointments this morning with 9:30 labs and a 10:00 appointment with Dr. Orchard. And that was all we had scheduled. So we made a plan to go to the museum to see the Dead Sea Scrolls with the Carman's. Unfortunately, my mother broke a mirror this morning while we were getting ready to leave. Uh-oh. We got Torie's labs back and her hemoglobin (Hgb) is down to 6.0, and her hematocrit (Hct) is 16.9. So they had to take more blood to send to the Red Cross and she will get transfused tomorrow when her blood is ready. She is on the last week of her steroid wean, and while it looks like the Nephrotic Syndrome is in remission, the Hemolytic Anemia doesn't seem to be. So she won't be getting her line out on Wednesday, she'll be getting a new one that day. And then we (well, "we" don't have to decide anything - Dr. Orchard does!) will have to decide what to do about the anemia. Torie gave Teddie a thorough assessment after Dr. Orchard was done with hers, and we went to radiology after that for a chest X-Ray. We ended up getting back to RMH about 1:30. It happens every time we think we're going to have a short day!
It was great to be back at clinic and see all of our friends there - Dr. Orchard, Theresa, the nurses, and the techs. Everyone loves Torie's curly red locks!

We got to see the Carman's while we were there, and then we got to meet Ryan. He has Hurler's Disease, and he was transplanted when he was 16 months old....17 years ago! Yes, 17 years! I can't tell you how much hope this gives us for Torie's future, and for Josiah's, and all the rest of our Hurler family who have chosen the transplant route. All it takes is faith, hope, trust and a bit of fairy dust. And happy thoughts and prayers from you! Thank you for helping us get this far...Vic-Torie!

T+183 Minnesota, Here We Come!

Tomorrow we leave to go back to Minneapolis for Torie's 6-month check-up. Torie is so excited to go "onna urplane", and to go back to the Ronald McDonald House. She has been talking about it all week! She is also super-excited to see her bestest twin-triplet, Josiah. They didn't get much of a chance to hang out before, so hopefully they can spend more time together this coming week. Mom and I are super-excited to see Josiah too, and Rachael and Jim. They are traveling as I post this, so please send them safe-travel prayers and happy thoughts! Torie has gotten so much more active in just the last few days...I think having her blood pressure meds lowered has made a difference. Or maybe it was just time to get up and go. Whichever, we're so thankful to see her finally going!

One year ago today was Torie's appointment with Dr. Manchester, from Children's Hospital. He diagnosed Hurler's Disease while we were still in the waiting room. It's hard to believe how our lives have changed in the past year. We are blessed in so many ways, and we are grateful for our wonderful family and friends. We treasure every day with our cute furry little angel, and we celebrate small Vic-Tories!

T+181 6 Months!

A Very Merry 6-month Un-Birthday to Torie and Josiah. It was on February 4th that they both got their new blood. It seems like so long ago now!

I'm sorry for not posting sooner - I was in Denver for our dear friends Jamie and Joe's wedding celebration. So here's the catch up.... Uncle Shaun was here this weekend. He got to spend quite a bit of time with Torie, Lexie, and the Great's. Lexie asked Torie if she could say, "I love you Mommy." And she did. But she wouldn't say she loved Mama-Great, Papa-Great, or Uncle Shaun. But when she saw Shaun putting the butter on the table for dinner, she said "I love Uncle Shaun have butter." That's my girl! She has been much more active lately. Walking on her own, getting into her car, and playing more. Last week after we saw Dr. Mike, her amlodipine (blood pressure med) was decreased from 4 mg twice a day to 3 mg twice a day. Yesterday when we went to see him, her blood pressure was 82/50, so he felt that it would be good to stop her labetolol - another blood pressure medicine. I think with her blood pressure running low, she has been a little dizzy. So, maybe now she'll start doing even more. Her labs are looking good, except for hemoglobin. It's down to 8.1. Last week it was 8.4, but we thought with not drawing blood every day that it would start coming up on its own. Maybe next week. All in all, better.

Thank you again for following with us on this long, strange trip we're on. We are grateful for your prayers, support, and happy thoughts. I hope the next 6 months are a little bit easier... Vic-Torie!