Portland, Take Two

Sierra and I flew into Portland yesterday so she could follow up with the surgeon here and begin work on her prosthesis. She had a great time on the airplane, wasn't afraid at all, and we made it here with no bumps
( besides a bit of turbulence). We hung out at the Shriners hospital yesterday, watching TV and playing in their playroom. We are lucky that they have rooms onsight for folks who come in from out of town, so we can stay on premesis and not have to worry about paying for a hotel, and we are blessed to have famiy in the area to shuttle us to and from the airport . (thank you Uncle Monty and Aunt Penny, and Auntie Missy).
This morning Sierra met with Dr. Krajbich, who did her surgery, and he is very pleased with her result. Her Xrays show that her bone is fully healed and she is now cleared to begin weight bearing. Of course, that will be a bit hard until she has a prosthesis to work with, but we are going to start working with her to put some weight on that side to ready her for when her prosthesis is complete. She was molded for her prosthesis today as well, she wasn't incredibly happy with the process, since they wrapped her fully to her thigh, and it was a bit uncomfortable, but she soldiered through like she always does. We were lucky to attend and activity day her as well today, they had crafts and music and games for the kids,  and a lunch for the parents. And all of the kids were given a build a bear, Sierra's is a pink flowery bear with a black and blue shimmery dress. She really loves it, I just hope I can fit all of the new things she is getting in our luggage on the way home.

Another Delay

As I suspected last weekend, Sierra's oncologist put off her chemo for another week in order let her mouth fully heal. I knew it was a possibility, but that doesn't make it any easier to hear when you have spent hours packing and preparing for a hospital stay. Sis and I knew around noon that chemo was a no go, so we went out to lunch and a movie together for a mommy, daughter date. We haven't done anything like that in a really long time, and it was nice. Although it is disappointing to be delayed, we look at the bright side. She will likely feel really good for the next week, which means our Portland trip should go smoothly, we are able to attend a few functions this weekend and go to church as a family on Sunday, and she will have an extra week of feeling well at the beginning of the school year which will mean a few more days of school before her yucky chemo. Sierra wasn't too disappointed about it either, though she was upset that her port would have to be deaccessed, though she did a great job, and didn't cry at all.
So we are looking forward to a week of feeling good and spending no time in the hospital, or at appointments. It will be a chance for all of us to recharge.

Nothing Much

There hasn't been a whole lot going on recently, Sierra was released from the hospital on Tuesday evening and we have been hanging out together, knowing she is headed right back in tomorrow. She is feeling fairly good and her appetite is returning. She still isnt eating a ton, but anything is better than nothing. She goes in tomorrow morning for her methotrexate, which is her easier chemo, other than the constant potty breaks as she is flushed heavily with fluids. She should be out of the hospital Monday and Tuesday we leave for Portland. It will be a busy couple of days and then we fly back Thursday night and head straight back to the hospital on Friday for another methotrexate treatment. And the following week school starts. We are definitely going to have our plates full over the next few weeks, but we are excited to be moving closer to the end of treatment.

Update

Sorry for the lack of updates. It seems so repetitive to me, since she is basically in the same situation as every time her counts are low. We have been in the hospital for a week now. Her counts are starting to climb again, this morning her ANC was over 600. If she werent running a fever or needing continuous pain medication, we would be able to go home, but we will robably be here for another 2 days atleast. She has to be weaned from her morphine drip and be able to take all of her meds orally. She has been dealing with her mouth sores again, like every time her counts are low, so she can hardly swallow, but she is talking more each day, so I know it is getting better. She is scheduled to go in for more chemo on Friday, but now I am thinking it will likely be delayed. She only has a few days until then and I doubt her mouth will be healed sufficiently enough by then. On a good note, Sierra is up to 35lbs. She has been on IV nutrition for 4 days and they are starting her on an appetite stimulant today as well, hopefully we can keep her from getting so skinny again.

On The Rise

Sierra has been doing really well over the past few days. Even when her ANC has been hanging out at 0, she has still been in a pretty good mood most of the time. How she cooperates with her medications is usually a pretty good indicator of her moods, when she cooperates and takes them without a fight, we are good, when she fusses or gets upset about them, we are in for a fight all day. She has been taking them fairly cooperatively all throughout this stay, so I take that as a good sign. She also hasn't been running fevers this stay, which means she isn't on a million antibiotics. Today her ANC is finally on the rise, it is 54. But she also ran a low temp of 100.1. They dont usually consider it a fever until it is over 101.5, so she is still in the clear for now, but please pray that it stays down so her hospital stay doesnt get extended. She has to have an ANC over 200, and be fever free for 24hrs before she can be released. Her mouth is giving her a good amount of pain, she is on a morphine drip now, so we can stay on top of the pain, but she still is very careful about talking, and isnt eating anything solid. Hopefully she will be released this weekend.

ER Again

Sierra has done so well this time around avoiding a fever, though I didn't allow myself to get my hopes up that we wouldn't end up in the hospital with low counts. She has been feeling pretty good, but her mouth sores are starting to make an appearance, so going in to the hospital is actually going to be a benefit to her. She will be able to be on IV nutrition, since she is definitely not eating enough calories(only weighs 30lbs now), and will be able to be on IV pain meds when the sores hit their worst. She is running a fever of 101.3' now, so we are waiting on the doc to call us back and tell us to head into the ER. Hopefully it wont be a terribly long stay, and her counts will start to recover in the next few days, I am sure she is at rock bottom now, and will be needing some transfusions over the next couple of days anyways.

Nausea Makes An Apperance

Well, Sierra did really well the last few days. I am really surprised that she managed to make it through this course of chemo with no sickness in the hospital, that is a first for her. But now we are on day 6 following chemo and the delayed nausea is finally rearing it's ugly head. Sis has felt awful today. She started out complaining of tummy pain, the n it turned into nausea, then full blown puking. She tries as hard as she can to avoid throwing up, she hates it so much, but eventually today it was too strong for her to hold back. Poor girl was miserable for a good 30min, then she finally wore herself down and was able to sleep. She hasn't been running a fever at all, which is the main thing we watch for when her counts are dropping, so for now we just keep her as comfortable as possible. She is scheduled to go in tomorrow for a check on her blood counts, but if the nausea continues today, we will have to make a call in to the doctor. We are hoping to avoid any extra time in the hospital if possible, so any prayers that can be passed our way would be appreciated.

Sierra has felt so good up until today, so we were able to get a good amount of school shopping in on Tuesday. She had good energy, and had fun picking out some cute things for next year. We are also working on a plan for Sierra's prosthesis and have some appointments scheduled in Portland at the end of August. She will see doctor Krajbich and he will OK her to begin the steps toward getting her prosthesis, Sierra is very excited to get to ride on her first airplane, she was very disappointed when our Denver trip was cancelled because she was looking for to the airplane ride so much.

A Fall

Sierra did amazing this round of chemo. She has been eating  and hasn't been dealing with nausea at all so far. Of course, this chemo does have a tendency to cause late onset nausea at around 5 days past chemo, so we will keep a close eye on her and hope that her anti nausea meds will be enough. We are expecting that her counts will drop around the weekend, and that she will be back in the hospital with a fever for about a week, that is just kind of how things go for her.

Now for the bummer news. Sierra had a great day on Saturday, didn' need any pain medication at all for her leg, and was handling the chemo well. After her 4 hours of being on the chemo drip and having to pee every hour, per protocol, we were very tired. We laid down to go to bed around 11:30, and I heard her nurse come in a short time after to take her to the bathroom once again. I was in a light sleep mode, and dozing when I heard Sierra scream. I instantly shot out of bed and ran over to her, she was in the nurses arms at that point, with a bloody nose. She had fallen when getting out of bed and hit her face on the bedside commode, she landed on her good knee, but also hit her left foot. She was freaking out, of course, and so was I. I felt so guilty for not getting up to help her go to the bathroom. There was probably nothing I could have done anyway, since she is so independent and generally gets in and out of bed on her own, but I feel maybe I would have known to help her that time, mothers intuition and all. After the fall she was in so much pain, mainly in her left foot, so she needed some oxy and I had to sit beside her head and let her cling to my hand until she fell asleep. Then I couldn't go to sleep because I was afraid she would need me, so I sat up for 2 hrs worrying about her until her next potty break. After that I was able to sleep, and Sierra was very adamant about waking me each time she had to use the bathroom. Sunday they did an xray to be sure she didn't have any breaks or fractures, and she doesn't. So we are just dealing with some bruising, maybe a sprain, and we are keeping it wrapped which is more comfortable for her.


On a better note, we are finally in the works for her prosthesis. We will be heading to Portland at the end of August to meet with the surgeon who did her rotationplasty. Once we have seen him, and he is happy with her healing, she will be molded for her prosthesis. We get to do a few things kind of jammed into only a couple days. So they will mold her, and make a check socket, which is basically a mock up of the socket she will eventually have, but it is made with clear material, so that the fit can be really perfect for her, they call it the glass slipper. Once this is completed, they will start making her temporary leg, which we will have to travel back for sometime near the beginning of October(guessing on that one).  So it is looking like 2 months at this point until she will have a leg to start working on. Portland will leave her leg unfinished until she has completed all of her chemo regimen, then she will go to Portland for a few weeks of intense physical therapy to get her working well with her leg, and making sure she gets the best gait possible, after that they will finish it off and allow her to choose how it looks when it is all done.

Sierra got her wheelchair at the end of July. She sits a bit crooked in it at this point, because she doesn't want to put much weight down on her left side, but she is starting to straighten out, especially now that she isn' so wrapped up with bandages. And she got a cute stuffed camel, she picked it out from the gift shop and named her Camille:)

So Far, So Good

Sierra was admitted yesterday for her 4th round of dooxorubicin and cisplatin. It has always been her toughest chemo, and we have always struggled to keep the nausea and vomiting away. But we are doing pretty well this go around. She has managed to not get sick at all, and we aren't even having to knock her out like we did last time. She will recieve her second dose of both chemos tonight and then we just have to wait to go home until the docs feel her nausea is under control, so probably Monday. Sierra and I got to meet with a few ladies who volunteer for Make - a - wish today. They asked all sorts of questions and filled out lots of paperwork, and will help Sierra get the wish she wants. Right now her top choices are going to a Justin Bieber concert, and getting to meet him, and going to Disney World. The volunteers also brought her a few gifts and she is going crazy now with some Bendaroos.

We are getting more info about how we will need to handle getting a prosthesis, and we will be doing it at the Shriners in Portland where she had her surgery. So we will get to do some travelling back and forth over the next year or so, but this will allow us to work with people who have done it before and get the best prosthesis for Sis. We should be making our first trip sometime in the next month or so for her to be molded, and she has been cleared now to start physical therapy, and she is anxious to get started.