T+24 & 1.0!

Torie finally had a 2-step-forward-only-1-step-back day! Yesterday her fever went up to 101.7 and she started back on Vancomycin. Her ANC dropped, hopefully sending cells to fight whatever is going on. She also got more platelets yesterday morning and they brought her count up to 53! She had to have some O2 over night, but this morning her WBC's were 1.0 and an ANC of 620! Hooray! If she can stay over 500 for 2 more days, she gets to go out in the hall! A huge Thank You to Sara, Hannah, and Leah, Josiah's cute sisters, for all the extra marshmallows in the blood soup! They did the trick!

Our biggest challenge right now (it seems there's a new one every day) is medicine. Torie was doing so good taking her meds, but they've changed more to oral and she just doesn't want to do it. She either gags and throw up or she spits them out. Then we have to start over. The nurse was just in giving her Growth Factor. I wish it could be Grow-Up Factor, so that she could understand why we're forcing her to do this. We've tried to tell her how much we want her back at RMH with us, but she's just a little too young to get it! Please send your thoughts and prayers to Torie and Josiah for the strength to get over this med/eating hurdle! Thanks for checking on us and thanks for all you do...you are appreciated!

T+22 & WBC's 0.6!

Hooray! Torie's WBC's this morning were 0.6! Her Absolute Neutrophil Count (ANC) is 372. This count is a better indicator of her ability to fight infection. When her ANC is 500, she gets to go out in the hall - wagon rides, walks, and hopefully Josiah's pink car! He's not here anymore to use it...Si is back at RMH as of this afternoon. I saw him at dinner with his family. It's so nice to see them all back together! We're so so happy for them. Those Tennessee prayers sure are good ones! The doctors are starting to switch Torie's medicines over to oral and they're thinking MAYBE we may get to bust out of here as early as the end of next week. As bad as we want her back at RMH with us, it's scary to think of her out of her bubble and in the outside world. She's so strong to go through all this. I can't tell you how much I admire her.

Before Torie was admitted, during her evaluation week, we met with Dr. Whitley, one of the geneticists here. I voiced my concerns about being the carrier of this horrible disease. I got my lab results back...It wasn't me! I can only imagine how relieved my Aunts, Uncles, and Cousins are going to be by this news. Hurler's is something I wouldn't wish on anyone. So, Dear Cousins, Happy Breeding!

Please continue to send your wishes, happy thoughts and prayers to Torie for that wagon ride! Grow cells, grow! Vic-Torie!

T+20...Eating!

Torie woke up this morning wanting something to drink! Her WBC's are 0.3, and she got platelets for a count of 6. No fevers for over 24 hours and no throwing up for about the same. I decided I'd see if she'd take a "taste" of breakfast...

She asked for her fork and wanted the plate too! She had a few bites of eggs, sausage, and pears. She was having a hard time chewing it, and I remembered she doesn't have teeth yet (her gums are still so swollen that her teeth are covered by them). Heather, the BMT Fellow, stuck her head in the door to let me know they were here for rounds and I told her to come peek at Torie. She saw her sitting up eating and said, "Oh My God! Hooray!" then she opened the door to about the 10 other people waiting to start and yelled "She's eating!" I think they were almost as excited as Mom and I were. She hasn't eaten since February 2. We are super encouraged by this...hopefully we can get off TPN and Lipids sooner than later.

She got her 3rd dose of enzyme today and handled it like all the others...without a problem! Only 5 more to go! Josiah got his ERT today too and did great. The plan for him is home to RMH tomorrow! These 2 still have plenty of rough road ahead but hopefully the worst is behind them both. Thank you so much for all you are doing to help speed their recovery...I have no doubt that it's making all the difference!

Grow cells, grow! Vic-Torie!

T+19...A Better Day

Last night was really rough, but I'm pleased to report that Torie is doing SOO much better today. Her weight is down to 14.7 - that's 2.2 pounds of fluid gone! She's breathing better too. Still on O2, but not needing as much. Dr. McMillan thinks the GVHD is a false positive - she feels that it's related to all of Torie's meds and just the transplant process. Platelets went from 13 yesterday morning to 19 this morning. She may be making some on her own now! We're still waiting for WBC's to go up and those will help her feel better too. Thank you for the extra thoughts and prayers last night...she used every single one to get to where she is today!

I thought I'd give you a list of some of the things Torie has been spending her allowance on: CellCept, Neupogen, Ursodiol, Protonix, Norvasc, Voriconozole, TPN and Lipids, Cyclosporine, Chlorothiazide, Fortaz, Triamcinolone, Hydrocortisone, Labetalol, Azithromycin, Bumex, Ancef, Phenergan, Tylenol, D51/2 with KCl, Benedryl, Aldurazyme, Vistaril, Apresoline, and butt balm. And those are just her scheduled medicines! She has a whole bunch more that she can get if she needs them for pain, nausea, fever, blood pressure, electrolyte imbalances, et cetera. Pretty impressive list, isn't it?

In times that we grow used to hearing about people flying planes into buildings, putting bombs in their underwear, stabbings, shootings, pediatric doctors in Delaware that do horrible things to kids and all the other bad news we hear every day, I have found that they are far outnumbered by others who are caring, considerate, thoughtful, and kind. We have received so many well-wishes from not only our long-time family and friends, but also from our new family and friends. I am totally overwhelmed by the support that has been shown to Torie and to us by Josiah's family and friends in Tennessee, and our RMH family and friends. Even as we are in the most frightening time of our lives, we are blessed. Thank you!

Grow cells, grow! Vic-Torie!

T+18...2 Steps Back Again

Torie's WBC's dropped to 0.2 today, but hopefully she used 1 to try to beat this pneumonia. Her biopsy came back positive for GVHD (Graft Vs Host Disease) and they will probably start steroids tomorrow in addition to the cream. She's so red and itchy. She's still got a lot of extra fluid and that's not helping much either. She got PRBC's this morning for a hemoglobin of 7.3 and platelets were 13 so she'll probably get those in the morning. Her breathing has gotten worse over the last couple of days, and she's really working. They're switching her over to high flow O2, and she's starting Racemic Epi nebs for some stridor. Jeez, not a very cheery blog tonight. Sorry.

Lexie and Scott had to leave this evening to go back and keep working on their house. Torie's going to have a new room to go home to. Lexie painted polka dots on the walls and Torie loves looking at pictures of it. Josiah is doing great and he might even get to go home to RMH the end of this week. We are so happy for him and his family! Please say an extra prayer for Torie tonight that things turn around soon and sprinkle some pixie dust her way!

Grow cells, grow! Vic-Torie!

T+17 & WBC's 0.3!

Today Torie's WBC's are 0.3! Hooray! But it seems on 5D when you take one step forward, you take two steps back. Her weight is up to 15.7kg, and she is now needing oxygen (O2) to keep her oxygen saturation (O2 sats or SpO2) up higher than 90%. As far as her weight goes, her BUN and Creatnine (chemistry tests that reflect kidney function) are back down a bit so they are increasing her Bumex and Diurel. She's so puffy and swollen that her skin hurts when we touch her. She is still red and rashy (with lots of bruising thrown in because of her low platelets) so she is on steroid cream. She was hating that until today when she got to help put it on, now she hollers for more when we put it away! Goofball. We are still waiting for the GVHD verdict. Hopefully tomorrow. Now for her lungs... Her breathing has become more labored and she is still running fevers so she had a CT today. She did great with minimal sedation; just a dash of Ativan. They're not sure if it's just fluid or if she's working on a pneumonia, so they started her on azithromycin. (Maybe tomorrow I'll post a list of meds. Pretty impressive.) She's needed to be NT (nasotracheal - a thin catheter goes down though the nose to the lungs) suctioned a couple of times now. She's got a lot of upper airway congestion. They're not sure if it's drainage or sloughing of her mouth sores, or if her airway is as swollen as the rest of her. Prayers for her WBC's to keep going up so she can fight back!

Josiah is doing excellent! Check his blog for some super cute pictures. And tonight I got to meet Wyatt and his mom and dad. They are here at Ronald McDonald House for his spinal surgery on Wednesday. Another cute red-head like Miss Rylie and Torie! It's so odd the instant bond that I feel with these families. I guess since there aren't many of them, we're all part of the Hurler Family. I'm grateful for them; they truly know what we're going through.

Today is our 7 week anniversary here at RMH. It's been so nice to have Lexie and Scott here; it has certainly eased the homesickness that we feel. But we are so fortunate to have such supportive friends and family that make us feel a little closer to home. We treasure you all!

T+15 & 0.2!

Torie's WBC's today are 0.2! Hooray! Hopefully we'll start seeing it go up more now. Yesterday's skin biopsy results aren't back yet, but they started her on a topical steroid today. She has been so itchy. She got platelets early this morning but her counts are still really low. She continues to spike fevers, but so far all her cultures are coming back negative, and all of her viral studies are negative. It seems the nausea and vomiting are improving, and that she only throws up when she sees her medicine. I'm afraid it's going to be a long road getting Torie to take so many medicines by mouth. Today they stopped her her Dilaudid drip and she seems to be fairly comfortable without it. She is still getting Celebrex for her fevers and I think it's helping with pain, too. She seems to be just achy, and she acts like her skin hurts. No wonder, as red, itchy, and swollen as she is. Maybe now with a couple of white cells she can start fighting back!

A huge Thank You to Rylie and her family for their support and their comments. I use Rylie's blog as a reference tool...I'm constantly looking back to see what day Rylie got a new white cell, when her rash got better, etc! It seems these two red-heads must have talked about a lot more than Elmo at Joe's Crab Shack! And make sure to check Josiah's blog...he's doing great! He even got out in the hall in a wagon today. Hooray! Please keep your wishes and prayers and happy thoughts going for these sweet kids. They're so tough but they need all the help they can get.

Grow cells, Grow! Vic-Torie! Grow cells, Grow! Vic-Torie!

T+13 & ERT #2

Things here are pretty much the same. WBC's still 0.1. Torie's weight is now up to 15.4kg and they are adding more diuretics. They also gave her some Albumin today so hopefully that will help her move some of this fluid out. She continues to have fevers and her rash is worse...pretty much her whole little body. She is irritable, hurting, and generally miserable. Tomorrow they will do a skin biopsy (local anesthetic with just 1 stitch to close up the area but painful none the less) to determine if this is GVHD. If so, they will start her on steroid creams to try to fight it. All of her viral cultures have come back negative, which is good news, but also a bit concerning because now we don't know where this infection is. She may have to have that CT after all. She got her 2nd dose of IV ERT today, and did great with it. I'm more worried about next weeks dose since it's #3 with her new blood.

I can't believe how tough this baby is. She has been through so much and still has so far to go, but she still wants to get out of bed to play with her jungle and her kitchen and color and read stories. Her Mommy and Daddy are staying just as tough...long days, longer nights, and unbelievable stress. I'm so proud of this little family. If anyone can get through this, it's them. Keep us all in your thoughts and prayers please. And carry on the chant...Grow cells, grow! Vic-Torie! Thank you!

T+12

There's not much new today; Torie got PRBC's today for a hemoglobin of 7.4...about time! She continues with her fevers but the highest today is 101.8. That's a little better. She's still so swollen and puffy, like Josiah "a busted can of biscuits"! Her weight is up to 15 kg (dry weight is 13.4kg) and they are trying to get some of that fluid off but her BUN is going up. She had to have a K+ bolus to compensate for what is being pulled off, but yesterday she had to have 3 of them. It's still so hard to give her oral medicine..she sees it and barfs and then she barfs when it's in so we have to start over. Last night she developed a rash and still had it today but it seems to get better with Benadryl so they feel that she's doesn't have GVHD - yet. It's still definitely a concern. Her CT for tomorrow was cancelled - Hooray! I was feeling very nervous about it. Especially if she would have to be intubated. As swollen and puffy as she is, I don't know if they would be able to extubate her. And at this point, I'm not sure how much it would change her course of treatment. The Docs still feel that she is holding on course. The waiting is so long. Everyday we pray for those WBC's to come up so that she'll have just a little more to fight with.

She is so happy to have her Mommy and Daddy here. She loves playing with them and was actually up for about half an hour this evening. It's going to be so sad when they have to leave. The Grandma's are certainly enjoying the respite though. We're getting caught up on laundry and sleep. Thank you so much for all the mail for Torie...it's a bright spot in her days! Grow cells, grow! Vic-Torie!

T+11 & WBC's 0.1!

Unfortunately, Torie's temp was back and raring today, but the highest was only 103.2 and Tylenol helped for a little bit. This morning's labs showed a WBC count of 0.1! Hooray! Platelets were only 9, so she got a boost of those and hemoglobin is holding at 8.4. I guess that's why I never do well in Vegas...I thought for sure she'd be getting PRBC's today too. Potassium (K+) was low at 2.9 so she did get a couple of K+ boluses. Her weight is still way up and she just keeps getting puffier so they switched her diuretic to Bumex - it's a little longer acting than Lasix and doesn't cause K+ to drop as much so hopefully that will help. Her CT was delayed until until Wednesday at 1:00 pm because they want anesthesia support. It's really not a bad thing because hopefully 2 more days on Bumex will pull some of the extra fluid off her lungs - she's needed some oxygen (O2) last night and today - and sedation is such a scary thing with her (and all Hurler kids). She developed a pretty bad rash tonight that may be the beginning of Graft vs. Host Disease (GVHD). It went down a little after Benadryl and they'll be taking a closer look at it in the morning. She's so swollen and puffy that she doesn't look much like herself, but tonight I did see a couple of teeth! We haven't seen those for a few days because of the swelling. With no teeth and no hair I'm not sure if she looks like a newborn again or a little old man!

She's so happy to have her Mommy and Daddy here with her..she definitely perks up for them! They've been playing a lot of games, coloring, reading stories, and being a family again! We're also so glad that our friend Josiah is doing a little better...and his WBC's are 0.5 and he is already 20% engrafted. Hooray! Hero brother James gave him excellent new blood! Please keep up all the happy thoughts and prayers for these 2 exceptionally tough kids. They appreciate them and so do we. Thanks for all you do! We love and miss you!

Grow cells, Grow! Vic-Torie! Grow cells, Grow! Vic-Torie!

T+10...Turning A Corner?

Last night and this morning were the worst yet. Torie continued to throw up through the night and had such high fevers that Tylenol and the cooling blanket did nothing for. Her labs this morning were fairly unchanged; WBC's still less than 0.1, hemoglobin 8.4, platelets 17. I was a little surprised that she didn't get blood today. About 9:00 her fever went up to 40.5/104.9. They ice packed her and started her on Celebrex to try to get her fever down. They also scheduled her for a chest and sinus CATscan (CT) for tomorrow. She has to be sedated for this and they wanted to make sure that there is anesthesiology available because of her airway. I'm super scared about this...she is such a difficult intubation anyway, and now everything is so swollen that it won't be any easier if it has to happen. I picked Lexie and Scott up at the airport and by the time we got back, Torie was sitting up in bed and her fever was down! 99.2! Celebrex is our new best friend. Torie was SO happy to see her Mommy and Daddy. She had huge smiles that we haven't seen in a couple of days and big hugs for them. And they were so happy to see her, too. She is still so pale, and tired, and weak, but she's about 1000% better than this morning. Her fever has been below 100 all evening now. She's been playing some and even talking and laughing. Oh, how I hope she's turned this corner.

It's been 6 weeks now that we've been here and we miss all of you so very much, but we are grateful beyond words for all you are doing for us. Please keep up those thoughts and wishes and prayers. And thank you for all you've been sending out to Josiah. He's doing better today too, and his WBC's doubled...0.2! Torie next! Grow cells, grow. Vic-Torie!

T+9 and Other Numbers

0...WBC's
8.8...Hemoglobin
4...Platelets
103.8...highest temp today
188...heart rate with that high temp
10...times throwing up today
6...weeks we've been away
250,000...hospital tab for a month
13...hours till Lexie and Scott are here

It's been another rough day. Torie's temp is staying up and Tylenol isn't making much of a difference except to make her throw up. And then we have to do it again. She had a chest X-ray today that didn't show anything, her blood cultures aren't growing, so they drew labs for a ton of viral studies. Those will take a few days to get results back. Torie's mouth is so swollen from the mucositis that we can't see her teeth anymore and it's pretty painful for her. The morphine made her super itchy today so they switched to a Dilaudid infusion and she's doing better with that. She got platelets this morning and I'm guessing she'll get PRBC's tomorrow morning. Her hair is gone now and she's pretty puffy and swollen. She's getting Lasix to get off some of the extra fluid and labetolol to keep her blood pressure down.

She had a couple of hours this afternoon where she felt good enough to open a few cards and play with some stickers. Thank you for sending so many things for her to do! I'm very proud of her shopping ability. She has spent a quarter of a million dollars in 1 month...and without even leaving the room! Impressive! We are very excited to see Lexie and Scott tomorrow. They'll be here for a week. In between heaves today, Torie would say "Mommy Daddy here morrow." She can't wait to see them! We've had quite a few people tell us that Days 7 through 10 to 14 are the worst. I hope that means we're getting close to being done with some of this. I think about times I've said "That was the worst day of my life." I had no idea. We are so grateful for all the support and prayers. It makes such a difference to know how many people care so much for Torie and for the rest of her family. Thank you also for the prayers for Josiah - he's just as rough as Torie. But these two kiddos show such strength everyday and just keep on fighting!

T+8 A Rough Day

Torie has had what is probably her worst day yet. Her temp has been up to 103.8 and she's been barfing all day. She has horrible mouth sores and just generally puny. Tonight she is up in the chair and watching Lady and the Tramp, though. Nothing can keep her down long! I'm betting on platelets in the morning...17 this morning. I'll post a better update tomorrow! Please send extra happy thoughts and prayers please. We hear days 7-10 are the worst!

Grow cells, grow. Vic-Torie! Grow cells, grow. Vic-Torie!

T+7 One Week & ERT #1

Hooray! One week post BMT! And yesterday Torie got her first dose of enzyme; she'll have a total of 8 doses IV. She had a pretty good night but needed to get some morphine for mouth pain. Mucositis (mouth sores) is a side effect of the chemo Torie. Her mouth is really swollen and she's probably having some sloughing of tissue that makes her throat hurt. Hopefully she doesn't have any sores in her throat. She's on a morphine drip now and she seems way more comfortable. Everything around here is a trade-off, it seems. The barfing and poo-ing slow down so that something else can go on :( . But Torie's a trooper and still has great style, as you can see! Thank you to Julie for the shades! And to everyone else who is sending her so many things to brighten her day. She loves all the Valentine's, too!

Torie's labs are holding fairly steady and she's right where the Doc's expect her to be. It's such a hard wait though. I wish it could be like re-booting a computer...unplug it, count to 10, and plug it back in. It's not much different than BMT, I guess. We just have to count slower. And keep waiting...

Grow cells, grow! Vic-Torie! Grow cells, grow! Vic-Torie!

T+6 & A Mohawk

I apologize again for my tardiness (Thanks Julie for reminding me!) and I appreciate how many people check on Torie every day! She's doing great...most of the barfing is done and she's slowing down on the other end. She's got an awfully sore fanny and even needed morphine for the pain yesterday. We're spackling her with "poop goop" a lot, and she doesn't let us forget to. "Mama, cream Torie bottom!" Her WBC's are still less than 0.1, but her hemoglobin has actually gone UP since yesterday. And that's without any more PRBC's. I guess the continual decline was also part of the manual she didn't read. Platelets are holding steady but I'm guessing she may need more Friday morning. Maybe I should start a "Platelet Pool" and sell squares! She does have some mouth sores but she still loves her bink. She's checking Elmo to see if he has any mouth sores too. She uses saline-soaked sponges to try to prevent them from getting worse four times a day, and for the most part she doesn't mind. She's always loved to brush her teeth and this is as close as she can get right now. With such low platelets we don't want to do anything to cause bleeding. She's got a lot of swelling in her gums and every day her teeth seem to look smaller.

She also started losing her hair yesterday and today she woke up sporting this cool '80's mohawk! I'm so glad we had cut her hair before this. It would be so hard to see it long and patchy. And it would have been a mess...hair everywhere!

It's heartbreaking to see her go through so much, but she is handling it with her usual grace and humor. She loves all the cards and gifts she's been getting and they are filling up her room quickly. Maybe if we overflow into the hall they'll boot us out!

Please keep sending your happy thoughts and wishes and prayers for Torie and for her friend Josiah and his family too. Life here on 5D is no fun for anyone and it's so easy to feel isolated and alone. Knowing you are thinking of us makes it so much more bearable...Thank you!

Grow cells, grow! Vic-Torie!

T+4

Torie had platelets and RBC's for a midnight snack! Yesterday morning her hemoglobin was 8.2 and her platelet count was 15 and she was awfully pale! They took a lot of blood through the day for Cyclosporin and CellCept levels so they decided to check it last night...7.7 and 9. So she got a unit of blood and some platelets and this morning she's up to 10.2 and platelets are 67! The blood they gave was O-. I'm trying to figure out if this is standard since she's not A- anymore, but I don't know if she's O+ yet. Weird. Any of the BMT grads got any ideas? Anyway, poor Torie is still having lots of diarrhea (and sore bum) and nausea. She wakes up dry-heaving a lot during the night. It's so sad...she says "No Mama. No barf." Please send her your happy thoughts and prayers to get over this part soon! And please remember our friend Josiah..he's doing great and we hope he stays that way!

Grow cells, grow! Vic-Torie!

T+2

Torie's blood culture is growing Coag negative staph. Same thing she had last fall, but she's not nearly as sick this time. She's not dehydrated (the opposite, in fact, and they started Lasix today) and she was put on antibiotics within an hour of her first fever, so hopefully we're not behind like we were last time. But she did have WBC's last time, and she doesn't now - still less than 0.1. Her platelets this morning were 22, so I wouldn't be surprised if she got those tomorrow. C-Diff came back negative, so all the diarrhea is probably from chemo. It takes a while for the side effects of chemo to catch up. That doesn't seem fair (well, what about this does?) that she's finished with it but still has to have problems. She's doing better today, not nearly as pukey as she has been. She loves all the cards she is getting so thank you for sending them. Once again, we don't have enough to words to express our gratitude for your care and support!

Grow cells, grow! Vic-Torie!

T+1 & Party Pics!

As promised, here are some pictures of Torie's Un-Birthday party. She had cupcakes and balloons and lots of presents. She got a new oh-so-soft blankie from Jack, Traci, and Chase and Tickle Monster hands and a book from The Beckerman's, The Bower's, and Grammy Bonnie. She got markers, and sticker books, and puzzles. The hospital gave her a song book with a CD and more balloons. And a Sneetch from Uncle Shaun. With so many presents to open, time flew and she had a blast!And she wore her bone jammies for new blood day!

Torie had a pretty rough night. She has continued to have fevers, along with diarrhea and barfing. Her chest X-ray from last night is clear, but her blood culture is positive. At least she was started on antibiotics right away last night. With having no WBC's, she's going to get some infections. We just hoped they wouldn't be so soon. Her morning labs were good, but her hemoglobin and hematocrit are dropping, as are her platelets. This is also expected and no surprise and she'll probably be getting her first platelet transfusion in the nest couple of days.

Torie is still her usual smart self. Last night I was rubbing lotion on her feet and she pointed to her heel and said "foot elbow". Then she pointed to her knee and said "leg elbow". I never thought of it that way!

T-0 & New Blood

Torie's new blood went up at 1:10 p.m. and was infused by 1:30! We knew it would be quick but Wow. Her new blood type is O+. The stem cells went through her central line, and somehow know how they're supposed to get to the bone marrow. She tolerated it great and had so much fun opening presents at her Un-Birthday party. (I'll post about the party tomorrow..lots of pictures!)
We don't know who donated this cord blood but we will always be grateful that they chose to donate.
After the Un-Birthday party, Torie took a huge long nap. I think all that she's been through is starting to catch up with her. She woke up with a fever of 102.2 so they drew blood cultures and did a chest X-ray. She's now on antibiotics - more Vancomycin - and Fortaz until the blood cultures come back. This is pretty standard with transplant. They want to make sure that if she has an infection they start treating it right away because she has no immunity anymore. To anything. She'll even have to start all over with immunizations. She perked up after some Tylenol and now she's sleeping. She actually perked up a little on the way to X-ray when she saw Josiah's room. He got his new blood today from his hero brother James, and they're both doing well.The Chaplain, LaDonna, did a blessing service for Torie right before she got her new blood. The blessing was written several years ago specifically for stem cell transplants. Here is the blessing she read...

"Torie, you were born from the union of the life-giving blood of your parents. Today, you are being bonded in a special way with the life-giving blood of your donor. We are thankful for the loving kindness of this child's parents to donate to us this cord blood. Embrace Torie in your loving arms and surround her with your healing presence as you bless her with this gift of life. Open her body and spirit that she may receive the living hope that is resting in the gift of this cord blood."

I hope I am able to tell you what happened during the blessing. I was holding Torie on my lap and she became so calm and peaceful. I could feel Tom's dad, Grandpa Flake, in the room with us. I heard the words the chaplain was reading in Grandpa Flake's voice. And I could see and feel his great big hands on Torie. He was here with us giving us his strength and love and prayers. Please please please add yours to Grandpa Flake's so these new cells will grow enzyme for Torie. Grow cells, grow! Vic-Torie!

Zero

Torie's WBC's this morning are less than 0.1. It's hard to see this number, but I keep reminding myself that this is why we're here. They're having some problems with her line drawing blood today so they are using some TPA to try to open it up. Other than that, she's ready. She had a pretty good night's sleep so she'll be rested up for the party! I'll post more this evening to let you know how it went...

T-1 & ERT #16

Torie got her 16th dose of IV enzyme today and next week we can start over with her post-transplant doses. She's still doing great and loving all the mail and presents she's been getting! This evening she had some Un-Birthday Eve gifts...Uncle Shaun remembered that she loves Snoopy and the gang, and Aunt Lettie sent fun lace-up clothes for a teddy. I'm so glad that Collette will be coming out with a U-Haul to help us get back to Colorado! Torie also got a Little Critter book about going to the hospital from Auntie Erin and Auntie Heather and their families. It means so much to have the support that we do from so many people. I can't imagine going through something like this without it. Please think an extra happy thought and say an extra prayer for Torie tonight...tomorrow's the big day!

T-2 & Chemo's Done!

Hooray! Today was Torie's last dose of chemo and what better way to celebrate than with last-day-of-chemo presents. Aunt Anne and Uncle Rob (Papa Tom's brother and wife) and their families sent a Raggedy Anne and a Night Songs CD. The songs on the CD are from Anne's father, Grandpa Edwin Jones. Our Flake family are the most caring and generous people in the world and we are so lucky to be a part of this big wonderful bunch.
Tomorrow Torie gets her last doses of Keppra and her last pre-BMT enzyme. She'll get 8 doses post-BMT. She's still spunky and energetic and excited for her Un-Birthday party on Thursday. Her friend Josiah is getting his new blood on Thursday also. His twin brother James will be his donor. Please keep them and their family in your prayers and thoughts as these incredibly tough 2-year olds start their battle!

T-3

Torie had a kinda rough day today. She's on a medicine called Keppra to prevent the seizures that can be caused by the Busulfan and I think it's making her a little crazy. One of the side effects can be "altered behavior". She acts like she has 'roid rage! Her behavior is very much like her mommy's was when she was on phenobarb. Thankfully she only has 2 more days of it! Today she started on Cyclosporine (CSA), a medication that stops the action of specific WBC's that are involved in the rejection process. For BMT patients it's to prevent rejection or graft versus host disease (GVHD). Torie will be on this for about 9 months after transplant as long as she doesn't develop GVHD. If she does get GVHD, she'll be on it until it is treated and gone. So no GVHD! She also started mycophenolate (MMF or CellCept) today and she'll be on this until about 6 weeks after transplant. This is another drug to prevent rejection. Hopefully she'll stop hating taking medicine soon. It's gonna be a long haul! She has pretty much stopped eating...she's not even wanting "wobby milk" now. I think the TPN and Lipids are here to stay for a while.

She continues to amaze everyone with her energy. One of her nurses today said that every once in a while they get a kid that just doesn't seem fazed by the whole transplant process. Please please please let her be it! Thank you for all the mail Torie's getting...she loves opening it and taping notes and cards to her walls. And to the Mazon's and the Baxter's...thank you for the stickers! They were a huge hit!