T+237 Finally, An Update!

After 2 days at sea and 2 days in San Francisco, I'm finally able to try to get you caught up... Sorry! Torie is doing well. She is perky and spunky. She has been on 5 days of steroid treatment, and like we thought, eating. She has been off TPN, and was able to avoid getting a PICC line. Tuesday she had a bone marrow biopsy and came through it like a champ. She got to Recovery and ate dopido wips (dill pickle potato chips)! There were no results back last night, and I don't have cell service today (at sea again). Hopefully we will have some news tomorrow when we arrive in San Diego. Her hemoglobin and platelets are still bouncing around, but her bilirubin is down to 2.9. She is also off Vanco and Ceftaz. Right now she is dealing with blood pressure issues, again. Yesterday they started her on Atenolol, another beta-blocker. If they can get her blood pressure down and she isn't needing frequent transfusions, she may be able to get back to RMH this weekend. I hope so...Mom and Aunt Karen would be able to spend some time together as a bonus. I am so grateful that I've been able to leave Torie in such capable hands for the last 2 weeks.

I apologize for not getting some very important birthdays on here. Our sweet dancing girl, Makinley, turned 11 on the 27th, and we celebrated Stacey's birthday here on the ship on the 28th. Happy Birthday, girls! We love you both! On a sad note, it was 3 months ago today that Cowboy DaNNY left to go to heaven. We think of him and his family every day, and our prayers are with them today. Once again, thanks for following Torie's Story. We are so blessed to have your support and prayers for Vic-Torie!

T+232 Back on Steroids

Torie's blood counts have been all the place...yesterday her hemoglobin dropped to 4.5 and platelets to 7. After she got transfused with both, they came up a little but she had to get more platelets today. Her WBC's today are 0.9 with an ANC of 500. More G-CSF. The decision to restart steroids was finally made, so she is back on prednisone. Yuck. But, Silver Lining, maybe she'll start eating and be able to avoid a PICC line. Her bili (bilirubin) peaked at 8.4 the other day, but it is down to 4.3 after restarting ursodiol, a medicine that protects the liver. She was on ursodiol during chemo and transplant last winter. Her CSA wean is back on hold; they're still not sure about chronic GVHD (Graft Vs. Host Disease). Some good news - her latest enzyme level is back up from 15 to 25. Whew! Right now the plan is for 5 days of steroids to hopefully get her counts to stabilize enough to start a chemo drug for the Evan's Syndrome. Reports are that she's feeling good, and getting more active.

It's so hard to be this far away and not have a better idea of what is going there. It's also hard not to be around my puppy everyday, but if her Mommy can be able to do it for so long, so can I. We're about to leave Ketchican and we'll be at sea for the next 2 days, so I probably won't post until I have more news. Thanks for hanging in with her, and for sending prayers and happy thoughts her way. Grow cells, Grow! Vic-Torie!

T+ 232 Childhood Cancer Awareness

September is National Childhood Cancer Awareness Month, and the gold ribbon is the symbol. So for the rest of the month, Torie's Story will be gold for our friends who are or have battled this horrible disease. I waited to post this until today in honor of Liam, who is 4 today. He is doing so well, and I was so glad to be able to see him and his Mom, Diedre, before I left Minnesota. So Happy Birthday, Liam! As we move into October, and everything turns pink, please remember all the kids who are fighting so hard.

Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere, and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light. (Author unknown)

T+230 Three and a Half Today!

I apologize for not posting sooner, but Internet has been spotty. I am currently heading from Hubbard Glacier to Juneau. Tomorrow I will have cell service, so I'll try to update more then. Things are fairly unchanged in Minnesota. Torie continues with fevers, vomiting, and diarrhea. Her platelet count dropped to 4 on Monday so she was transfused. Her other labs are fairly unchanged except for her bilirubin - 4.3 the other day. They switched her fungal coverage from Caspofungin to Voriconozole (VFend) again, and if it goes higher they'll probably switch her again. Her G-Tube has been vented so she doesn't throw up as much, so she is still on TPN for nutrition. I hope tomorrow's update is better.

Late Happy Birthday to our Tennessee sister, Sara! She is Josiah's oldest sister, and one of the 3 sweetest girls we know. Her birthday was Sunday, and it was also Baby Sydney's Day +200. She is doing a little bit better, but still needs those happy thoughts and prayers. Our dear friend Joseph, and his mommy Kim, headed back to New York today. I'm so glad that Joseph is doing so well, but I will miss them so much when I get back to the House. Today Torie is three and a half. She has been through more in the last year than most of us will ever go through. However, she remains funny, charming, and brave. Thanks for celebrating our small Vic-Tories!

T+226 Another Update...

I apologize for the lack of posts this week. Torie remains in the hospital. There is really not a whole lot new. She has had lots of tests, including Adenovirus, come back negative. She had a repeat CT of her chest Thursday that showed only minimal improvement, but not any worse. We'll take that! Her counts are still dropping...yesterday platelets were down to 17 (yikes) and her hemoglobin was 8.2, but she hasn't gotten blood since Tuesday morning. She is still needing oxygen when she's asleep, and she keeps spiking fevers. Mys-Torie is keeping everyone guessing. She does have her moments when she's back to her old self...the other day PT (physical therapy) came in with a huge mesh bag full of plastic parts. The therapist took them out of the bag and scattered them around the room so that Torie had to walk to get them. After Torie got the parts and they were put together, she had a great time dropping a ball down ramps. When her session was ending the therapist got the bag and said, "Torie, can you put everything back in the bag?" and in response got a quick "No." Of course, the therapist asked why she couldn't, and our darling girl said "Well, you got them out."

I'm in Grand Junction right now, getting ready to fly to Vancouver for a cruise. This is the first time I'm counting days until I get back. Leaving Torie yesterday was so hard, but I know she's in great hands. I'll update as often as I can, so thanks for checking in on her and sending her your prayers and happy thoughts. We appreciate all your help for Vic-Torie!

T+222 I.S.'ing

Torie continues to need oxygen when she sleeps, so we got her started on an"I.S." or Incentive Spirometer. It is to encourage her to take deeper breaths. She's not old enough to use the hospital's IS, so we got creative. Instead, she is blowing bubbles and noisemakers, and playing her new recorder.

Pretty cool that they come in colors now, huh? Right now all she can play is "Jingle Bells" and "Happy Birthday" (which sound remarkably alike), but I'm sure it won't be long until she is giving Carnegie Hall-worthy performances.

This morning Torie got more blood because her hemoglobin dropped to 6.1. Most of her other counts went down too....platelets 30, WBC's 1.7, and an ANC of 1200. Dr. Lucie came in tonight and told me that her latest engraftment level has dropped also. CD3 is down to 35% and CD15 isn't back yet. We are also waiting for her Enzyme level to come back. Her last level dropped to 15, which is about half of her previous. At this point, Mys-Torie has everyone fairly stumped. They are considering another bone marrow biopsy; increasing CSA and starting MMF again, or giving a different chemo that would wipe out some of her other cells. And so we wait for results, ask for more prayers for this sweet girl, and hope for Vic-Torie!

T+221 Sorry Rylie!

I have to start this post with a huge apology to Rylie. I was so proud of myself for remembering that her birthday was September 13. We got her card in the mail, and we've been singing "Happy Birthday Rylie" all day. Torie even made her a pretty birthday picture today. Rylie's birthday was yesterday. I am so sorry, Rylie! Check her blog (on the sidebar) for some great pictures of her weekend. Rylie is such an important part of our Hurler family, and we are grateful for the support of her and her family. So, Happy Birthday, Rylie!

Torie's day wasn't much different again. Her fever isn't quite as high. She had a chest X-Ray that really isn't any different than the last one. Dr. Orchard and Dr. Burke are in agreement that they don't want to start more steroids or chemo until she recovers from this infection some. Her ANC today was 1700. Part of me is relieved that they're waiting...she doesn't need to be any more immunosuppressed than she already is. The down side is that waiting extends our time here and away from home. But we always keep in mind that Torie is in the very best place she can be right now. And we'll do whatever needs to be done for Vic-Torie!

T+220 Another Day

There's not much new here today. Torie got blood this morning because her hemoglobin dropped to 6.1. Her platelets went to 34, and WBC's and ANC are down a little, too - 2.1 and 1500. She is still running fevers and on oxygen. Tomorrow we are having a care conference with Dr. Orchard and Dr. Burke. We may have to start saying "Mys-Torie" instead of "Vic-Torie" for a while.

No birthdays today, but it is Joseph's Day +250...Hooray! He is doing great, and they are looking at going back to New York the 21st or 22nd of this month. Even though we want our friends to be back at home, it's hard to say good-bye, but we are so glad we got to be here with them for the last 5 weeks. Whether it's Mys-Torie or Vic-Torie, we're happy you're sticking with us!

T+219 Give 'Em a Break...

Torie is still here in the hospital. She ended up not being able to stay off O2, and then yesterday evening she spiked another fever. So she's back on Vancomycin and Ceftazadime, as well as the Caspofungin. Today hasn't been a whole lot different. Her hemoglobin this morning dropped to 7.1, platelets are 38, WBC's 2.3, and ANC 1600. Her lips are a lot more pale tonight, and I won't be surprised if she gets blood in the morning. She needs a break! And so does her Mommy. This last year has been really rough on Lexie. After having her clothes slashed, glass broken, her phone destroyed, being hit, and having to clean up someone else's "eliminations" from her bed and the floor 3 weeks ago, she woke up this morning to find that someone threw a brick through her car's back window and slashed two of her tires. All this on top of the stress of Torie being sick and far from home. She needs a break, too! Please send some extra happy thoughts to our best girls...

On the subject of happy thoughts, today's birthdays are Sweet Baby Sydney, who is 1 year old today, and our friend Wyatt, who is celebrating his 5th birthday. Thanks for keeping us, and our friends, in your prayers. Fight cells, fight! Vic-Torie!

T+217 Off Oxygen!

Torie is off oxygen and hasn't had a fever for 48 hours. She is also off TPN and Lipids and on tube feedings. Her appetite usually comes back as soon as TPN is stopped. She got blood again this morning for a hemoglobin of 6.6. The IVIG doesn't seem to have done anything for the Evan's Syndrome, and there is now thought that she may have chronic GVHD (Graft vs. Host Disease). Her CSA wean has been stopped, and she will probably stay on it for a while now. Rheumatology is also seeing her now to see if she has some other autoimmune stuff going on. We're getting pretty tired of new diagnoses! None of the cultures from the bronchoscopy have come back yet, but she seems to be improving on Levaquin and Caspofungin. If she can stay off oxygen for the night, we are pushing for discharge back to the House tomorrow. The Pulmonary docs were in this morning, and I told them I was comfortable doing antibiotics at RMH. I also told them it wouldn't be a problem to change them if we need to; she'll be at Clinic everyday for labs and blood. Torie heard me say that and told them "Torie go to PWB (the building the BMT Clinic is in) in the stroller." It's so nice that she is able to manage her own healthcare! We're crossing our fingers for a quiet, uneventful night, and hoping to update you tomorrow night from our home-away-from-home...Vic-Torie!

T+216 Happy Birthday, Mommy!

Today is Lexie's birthday, and Torie gave her the second best present she could ask for...she's feeling better! Torie tolerated the IVIG overnight well, and she's getting another dose tonight. Her hemoglobin was 7.3 this morning, but her platelets dropped to 39. Her temperature was normal through the night, and she was on 1L of O2. The bronch went great. She was in recovery, extubated, about an hour after they started. They sent tons of stuff to culture, and only suctioned a small amount of secretions from her lungs. They reaccessed her MediPort while she was under, and she got platelets while she was in the OR. She felt really good this afternoon. She wanted lunch, read books, played with PlayDoh, had PT...she was busy!

She's sleeping now. She's on 1/2L of oxygen, and her respiratory rate is in the 50's. I'm hoping she can get off O2 tomorrow, and if she has no fevers, maybe get back to RMH on Friday. We are so grateful for your happy thoughts and prayers that got her through the last few days, and especially today, so well. Thank you so much for helping her...Vic-Torie!

T+215 Going Down...

Today Torie's come down on a lot of things...her fever has only gone as high as 102, oxygen is at 2L, and her respiratory rate has been 40-60. Unfortunately, some other things have gone down as well. Her platelet count dropped to 61, and her hemoglobin was only 6.9 this morning, so she got more blood. The Evan's Syndrome seems to be getting more aggressive, so tonight she will get IVIG (IV immunoglobulin) and hopefully it will help her stabilize some. Because she continues to have fevers, they have decided that they want her to have a Bronchoscopy in the morning. She will have it done in the operating room, and they will go into her lungs with a scope a take a look around. They'll also get samples to culture so we can maybe get a clearer picture of just what is going on. There are risks with doing this, but the biggest concern is that she may not be able to breathe on her own after the bronch. If that is the case, she will have to be on a breathing machine (a ventilator or "vent") and go to PICU. We are worried, and scared, but she is one tough cookie, and we know there will be tons of prayers to help her through this.

Today is our favorite now-13-year-old's birthday...Happy Birthday, Chase! And September is the month that we celebrate lots of birthdays, so there will be more coming. Thanks for keeping Torie in your hearts and in your prayers...you are appreciated!

T+214 Labor Day

Torie seems to have taken the Labor Day thing to heart - she's working! Her WBC's are up a bit and so are her platelets, but she had to get blood this morning. She's still working pretty hard to breathe, but it seems to be better than yesterday. She hasn't had to go up on oxygen quite so much, and her fevers aren't going quite as high. She even took a bath this evening. She still isn't feeling like eating, and she's dealing with some nausea and vomiting, so she's back on TPN and Lipids. Hopefully we'll see some more improvement tomorrow since she'll have a full 24 hours on new antibiotics and antifungals.

We hope everyone has had a happy and safe holiday weekend. We miss you all, and can't wait to be back home. We're thankful to have such wonderful friendship and support both at home and here at the House. Please keep Torie and our other friends in your thoughts and prayers...Fight cells, fight! Vic-Torie!

T+213

I couldn't think of anything to title this post, so I'll just give you a quick update. Torie was able to get down to 3L of oxygen this morning, but she she is still running fevers...102-103. She had a CT of her chest done today. It is showing a diffuse bilateral pneumonia as well as pulmonary edema. She is still getting Lasix for the fluid, and now she is Levaquin for atypical bacteria, and Caspofungin in case it is a fungal infection. It sounds like they are discussing a bronchoscopy to try to determine if it is fungal or bacterial. We are sure hoping for bacteria - much easier to treat. She's restless and uncomfortable. Her respiratory rate today has been between 60-80 per minute. We are using ice packs to bring her temperature down. On a positive note, her counts came up a teeny bit today. We know you are doing all you can to help her over this latest bump, and we thank you. Fight cells, fight! Vic-Torie!

T+212 & 7 Months

There's not much new going on today. Torie's WBC's came up to 2.7 with an ANC of 2000. Her hemoglobin and platelets continue to drop. She is still running a fever - her highest today was 102. She has been needing more and more oxygen today...she's currently at 5L and her sats are hanging around 92%. We just got back from X-Ray and her chest film is showing lots of fluid in her lungs. So she will be getting some Lasix for the pulmonary edema and hopefully be able to breathe a little bit easier.

It's hard to believe that her transplant day was 7 months ago today. It seems so long ago, and right now it feels like we're back there again. It's so hard to see her take these steps back...we want the forward ones. We want to be back home so badly, and we have no idea when that will happen. But we just keep taking one day at a time, and we are grateful for your happy thoughts, prayers, and support. Please keep them coming...Torie's using them up as fast as her blood cells! Fight cells, fight! Vic-Torie!

T+211 On 5D...Again

Torie is back in the hospital on 5D, but tonight she seems to be doing a little better. The last couple of days have been kinda crazy, so let me go back and catch you up. Yesterday morning we went to Chemo Clinic for Torie's 3rd dose of Rituxan. We were really hoping her counts had come up a little more, but they dropped again. Hemoglobin to 7.5, platelets to 91. She was feeling worse, too. She woke up barfing yesterday morning, and had a fever. About half way through her Rituxan, her fever went up to 100.5, and her O2 sat (oxygen level) dropped to 88%. Dr. Burke stopped her infusion, talked to the BMT gang, and of course, a temp of 100.5 means admission for 48 hours of Vancomycin and Fortaz. Dr. Burke was concerned about her pain in her hips/back, and wanted an MRI to rule out Avascular Necrosis (condition where bone dies because it's not getting blood flow) before her next steroids. He is also thinking that the Rituxan is not working like he had hoped. Her counts just aren't coming up. The next step may be an oral chemo - 6MP. And he told us not to book a flight home yet. I'm afraid we're going to be a while.

Once we got to Torie's room (510 this time. We hadn't been in this one yet.) she had more labs drawn, blood cultures, and tons of viral cultures. She slept quite a bit, and I wish I could say the same. She did wake up so that we could have a tea party from about 2 to 4 (yes, AM). Her labs this morning were even lower. Her hemoglobin was 6.5, platelets 84, WBC 1.1, and ANC 500. So she has gotten blood and G-CSF today. Her inflammatory markers are really high. CRP is 44.7 and Sed Rate is >140. She definitely has something going on, so they got her into MRI to make sure that she doesn't have a sepsis in her hips, and thankfully that is clear. It would have been nice to have an answer, but we'll keep waiting. Like I said, she seems to feel a little better tonight. Please send her extra prayers...she's needing more than usual right now...that her body can fight whatever is going on with so few white cells, and that her counts come up. Thanks so much! Fight cells, fight! Vic-Torie!

T+209 Luau!

Last night was the annual end-of-summer Luau here at the house. There were grass skirts, leis, beach balls and dancing. It was a blast! The staff and volunteers here at RMH do such a great job to make things as much fun as they can, and to have so many activities. What a great way to spend an evening.