Bell Ringing

 

Sierra rang the bell today to signify the end of her treatment.It was such a wonderful experience. We were blessed to have many of our family and friends attend and show support to Sierra. Throughout this whole experience we have been blessed to have the most loving and generous people surrounding us all, offering support through meals, or childcare, and especially through prayers. All of you have helped to buoy us up and encouraged us to be able to meet all of these challenges and conquer them. THANK YOU!

 

https://www.facebook.com/video/video.php?v=4014684689773&saved

Finished

Sierra has been doing amazing in the last few weeks since her surgery. She was hospitalized for a week, a few days longer than the doctors had predicted, but exactly what we had planned for. I feel like we were so blessed with Sierra's lung surgery experience and I know it was because of all of the prayers being said for her. She had an epidural that worked perfectly for the first few days, allowing her to get over the hump of the worst pain from surgery. She had no complications and never required oxygen after coming off anesthesia(though she wore the cute penguin oxygen mask just for fun). Sierra used oral pain medications for the first few days after coming home from the hospital, but by day 10 post-op she hasn't needed anything at all. She went back to school on day 12 post-op and has been so happy to begin getting back to a normal routine. Sierra will have her 3 month follow up scans at some point in February, until then she only has to go into the clinic once a month to have her port flushed, and once she has her scans, and they come back clean, we can schedule to have her port removed. We will travel to Portland again in January to work with the prosthetist and physical therapist to get her on her finished leg. She hasn't been doing a whole lot of work with her prosthesis lately, but now that we have no other medical stuff to worry about we are back to focusing on exercising and practicing walking. She has moments where she works very hard, and then has moments where she just wants to be able to walk again, I can't imagine how she feels as an 8 year old who wants to do so much, but feels so limited. She doesn't let things hold her back as much as possible, and is very adaptable about most things, but I do see her get frustrated from time to time that she can't do the things she wants, or that she always has to ask for help. Hopefully over the next few months, she will be back to walking and will be able to be more independent. Tomorrow is a very big day for her as well, as she will be ringing the bell at the Children's Hospital. This is a special rite of passage for all of the sweet kiddos that go through treatment and she has looked forward to it since all of this started. I will be taking lots of pictures, and video, and will post them tomorrow.

 For now we are looking forward to the holidays together as a family, and are feeling so blessed to have Sierra here with us.

Family picture from our trip to see Christmas lights at the Coeur d'Alene hotel

Love this girl and her sweet smile

Update 2

Surgery is complete. She is doing well and we are waiting to go back and see her. They had to remove the lower right lobe of her lung, but she is not in pain due to a great working epidural. The larger spot was osteosarcoma, but three little spots removed were benign. I can't wait to see her. The doctor was very impressed with her and how well she is handling all of this. She has a way of winning people over.

Update 1

They gave her some Versed, and she got really giggly. We gave hugs and kisses and they wheeled her out, no tears. They said it takes quite a while to get her prepped and they will let us know when the surgery actually begins.

Lung Surgery Day

Sierra is having her Thoracotomy today. They are doing just the right side, where she has a spot that is about 7mm by 11mm. Surgery will be a few hrs and her hospital stay will be 4-5 days. I will update as soon as syrgery begins.

Done, But Not

Sierra finished her chemotherapy like a champ. She didn't clear it from her system as quickly as we had expected, but that just meant a few more nights in the hospital to see her wonderful nurses:)
This weekend she had all of her post-treatment scans done. She had a chest CT, Pet-CT scan, Bonescan, X-rays, and Echo. We don't have all of the results back, but from just the CT scans the doctors can see growth in the one larger spot in her lung. All of the other little spots are still there, but haven't changed. We had hoped that they would all disappear, and that we wouldn't have to worry about a lung surgery, but we knew it was most likely going to happen. AT this point, Sierra will likely have a lung surgery in the next few weeks to remove at least the one larger spot. Once we meet with the surgeon I will know more, but the consensus of all the osteo parents I have asked is that getting any spots out of the lungs is the best plan of action. We are very hopeful that removing any spots from Sierra's lungs will be the end of her treatment and that she will not have any relapses. Please continue prayers, that Sierra will not be anxious about this upcoming surgery and that she will heal quickly, and that she will be done with this awful disease for good.

The Beginning Of The End

Sierra goes in tomorrow for her final chemo treatment, for the longest time this moment seemed so far away and now it is here. Sierra has had 8 months of chemotherapy, consisting of 18 rounds of chemo which included 24 hospital stays lasting from 2 to 11 days each. We are so blessed that she has done so well, she had the "normal" side effects from the chemo and had a few delays, but she was able to finish the full protocol. We have had such amazing support from family and friends, church friends and neighbors, and online friends and other osteo families. We are happy to be coming to an end of this journey, but are still apprehensive about where we go from here.

Sierra will have scans done in the next 2 weeks to check how her body has responded to these last 8 months of chemotherapy. The Chest scans are the ones we are most anxious about, if by some grace from God the spots that were in her chest have disappeared(prayers)we will be done with treatment and graduate NED(no evidence of disease), if the spots are still there, Sierra will have a thoracotamy(lung surgery) to remove and nodules in her lungs. After the surgery, or if she doesn't end up needing it, she will have scans every 3 months for 2 years, and every 6 months for the following 3 years. Osteosarcoma is known for coming back and is very aggressive, so we have to watch carefully, though the likelihood of it coming back after 2 years is lower, and so on as time goes by. We pray that Sierra will never have to deal with this cancer ever again, but we know that it is always a possibility that it will return.

Sierra has been doing amazingly well over the last month or so. She had her final Doxorubicin chemotherapy as an outpatient chemo, and it went really well. We had to go into the hospital 2 days in a row for her chemo to be administered and then we were able to go home and sleep in our own beds. I wish more of the osteosarcoma protocol was as outpatient chemo, I like being home at night as a family. Surprisingly, even though her blood counts did drop after the Dox, Sierra didn't end up with a fever. This was the only time she was able to stay out of the hospital when her counts were low, and she felt amazingly well the whole time. She didn't get the mouth sores she usually does and only needed to go in once for blood transfusions(though it took all day).

Sierra has been making a bit of progress with her prosthesis. She doesn't wear it as much as we would like, but she is getting more comfortable with it, and building strength to be able to wear it for longer periods. It is kind of a struggle to wear clothes with it, because she struggles to get her pants over it, and she can't wear it and use the bathroom, so we have some logistics that we are still figuring out, but it is a work in progress, and once she is done with treatment we will be able to focus more on getting her up and walking again.

At the church Halloween party, Sierra led the costume parade that evening, walking with her new prosthesis, and was very proud to show off to all of our supporters from church

LOVE

Sierra's Pumpkin

Trick or Treating, the kids had a blast, we stayed out for 2 and a half hours and got a TON of candy.

Hope This Works

I have been trying to get a video uploaded of Sierra walking with her prosthesis, but I have been struggling big time. I know it is sideways, but atleast it is up here:) This video was her second time in her prosthesis on day 2 of physical therapy.

 

4 To Go

Sierra had her fifth to last chemo round on Wednesday, the 3rd of October. It was Methotrexate, which means she gets a 4hr chemo drip and then we wait until she clears it enough from her system to go home, which usually takes 3ish days for her. She was in a great mood all day Wednesday, and we had a good time decorating her hospital room for Halloween, her grandma sent a bunch of fun things for her to use, so she definitely had the cutest room on the 3rd floor:) She did well for most of her chemo treatment, but started complaining of back and chest pain with about an hour left on her chemo drip. There was no sure sign of why the pain was happening, so they stopped her chemo and ordered a stat chest xray to be sure everything was looking good. I was a bit freaked out on the inside, but knew everything would be fine. I sent a quick text to Dave letting him know what was going on, and not to freak out, and we waited for the xray results, which came back normal. By the time the xray was done, Sierra was feeling fine, so the restarted her chemo and she finished up for the night. We still have no clue why it happened, but in the end it was all fine, thankfully. Since Sierra was in the hospital still on Friday night, I decided to brave and extra child there with us and invited Reece to stay over with Sierra and I at the hospital for the first time. The kids were both so excited, and it helped Sierra feel better about being there. We didn't do anything special, but they thought it was fun to go down to the cafeteria and pick their dinner and then sit in Sierra's bed and watch TV. Sierra had a pretty rough night that night though, sometimes the chemo can affect her mood pretty severely, and that was definitely going on Friday night. She was screaming and angry, for basically no reason, for several hours, and I was thankful when she finally wore herself out. After that she slept fine, and was feeling much better in the morning, but was anxious to go home, as soon as they told her that her levels were low enough she was ready to go. They couldn't de-access her fast enough, and luckily I had already began packing everything, knowing she would likely clear the chemo,  so we were able to load up pretty quick and get home before noon on Saturday.

She will go back in on Wednesday of this week to have her 4th to last chemo treatment, methotrexate again. We are getting very close to the end of her protocol and it is very exciting. Next week we will be making another trip as a family down to Portland for Sierra to be fitted for her prosthesis. She will get to try out walking for the first time since March. She will still be using her walker or crutches for a while, but she is so excited to begin working on this next goal, and I have a feeling that she will be a natural at using her prosthesis.

Being a goofball while getting her vitals done.

New games on the tablet are always a hit.

Monster High Dolls, a part of her most recent "Little Wish" from the hospital.

Totino's Pizza Rolls, the one food we must always have on hand.

Bub's first hospital sleepover.

SLEEPOVERS RULE

Feeling Good

Sierra was released from the hospital today. Her ANC had come up to 702 and her mouth sores are pretty much healed. She didn't hang out at 0 quite as long as she has in the past, and was only there for one day actually this go around, maybe because she only got one chemo instead of 2. She actually never ran a fever besides the one that landed her in the hospital, though she did have to get 2 blood transfusions and a platelet transfusion. She tested positive for some bacteria in her urine and complained of pain in her side when she went potty so they added an antibiotic for her in case she has a bladder infection. Her mouth sores never got as bad as they have before either, which is so nice. she never was in so much pain that she couldn't eat or drink, though they were pretty bad, morphine was able to keep her eating her pizza rolls and powder donuts:)

WE aren't scheduled to have chemo until at least Wednesday next week, so we have a free weekend, which hasn't happened in forever. We have lots of things planned though, which she is so excited for, I hope she has the energy to keep up. Sorry no pictures to update, I dropped my camera on Reece's birthday so I am waiting on it's replacement to come, hopefully Saturday, I take so many pictures so it is hard to be without it.

Low Counts Again

I don't know if I will ever be able to start a blog post again without apologizing for it being so long since the last update. Apparently I am pretty burnt out on blogging, it is just really low on my priority list. Sierra had her 6th to last round of chemo on Friday the 14th of September. She normally would've gotten two chemos together over 2 days, but she has had her limit of the cisplatin, so was only given a 15 minute injection of Doxorubicin 24 hrs apart. Some kids are allowed to do this chemo as outpatient, since it is such a quick injection, but Sierra's oncologist wanted to be sure that she wouldn't have any issues with nausea, so we were inpatient. I think she would've handled doing this chemo as outpatient just fine though because she had no trouble with it at all. She was given the second dose on Saturday and they sent us home right afterward. She went to 3 full days of school this week and then was sent home on Thursday with a low fever, it wasn't even over 100 degrees, so I wasn't too worried about it. Friday she had a clinic visit scheduled around noon and when I took her to that appointment she actually had a fever of 100.5, which meant no playroom for her, and she was admitted because her counts were bottoming out. Her ANC was at 20 and her red blood cells were borderline for a transfusion. Besides having low energy she has been feeling really good, even with the low counts. She was given a red blood cell transfusion early this morning, and her ANC was up in the 60's so even though I thought her counts were still on the way down, maybe they will just recover more swiftly since she had only one chemo instead of 2. The doctor today said she may be able to go home in the next day or 2, so we will just have to see how her counts look tomorrow.

On another note, I know people have been wondering how Sierra's scans went last week. I had spoken to a doctor about them, but it wasn't Sierra's actual oncologist so I wanted to speak to him first and have a fully clear understanding of the scans before I posted anything. Her bone scan is looking clear, she has no areas that light up anywhere else in her body, so that is a very good sign. Her chest CT is where the concern is for now. Sierra has some small nodules in her lungs which could be osteosarcoma. She had 3 very small nodules at her first chest CT that was done in March, but we were told that since they were only 2mm that we would just watch them, she had more scans in June, and apparently had 3 more 2mm nodules, though I was under the impression that they were the same 3 nodules, apparently I was misinformed. With these newest scans it appears that one of the nodules may now be 4mm, which is still incredibly small and could only "look" bigger because of how the slicing is done for the scans. So for now we are looking at finishing the chemo regimen she is on and then having a lung surgery to remove any nodules that show up on scans that will be done when her treatment is finished. This is obviously a scary thing, lung surgery seems incredibly huge compared to all we have been through so far, but we are hoping that if nodules do remain that they will be anything but osteosarcoma, or maybe that at least it would be dead osteosarcoma with no living cells. Sierra doesn't know about any of this yet, so please don't say anything to the kids about it, and please start praying that the spots will go away and that we can avoid this whole thing altogether. We are always hopeful that everything will turn out well, and have faith that Sierra will be just fine.

On a lighter note, here is a cute pic from last week when some Rodeo Princesses came to visit the hospital, Sierra was all smiles.

6 Left

Sierra has only 6 more rounds of chemo left. If she has no delays, she is set to be finishing chemo in the middle of November, right around my birthday. wouldn't that be the best birthday present ever, to know she is done with treatment, and can get back to living a somewhat normal life. Although she will have to deal with using a prosthesis, and have scans for the rest of her life to watch for the cancer to return, we hope that Sierra will be able to live a normal life, and do all of the things that she wants to do.

I have been very bad about posting updates regularly, and posting pictures. Life with a child with cancer is very busy, not to mention having 2 other kids to take care of as well, and a house to keep clean, and errands to run, well, you get the idea. We have a busy house, and when I get time to relax and unwind, I just don't always feel like having to think about what has been going on. Sierra has been doing really well. She is responding much the same to every treatment that she has had in the past. We have got a good routine down, and this life is getting more and more normal to us. Getting things packed for the hospital is a breeze now, and we know exactly what we need and what we can do without. Dave and I have a good system, rotating between the hospital and home, so that neither of us gets burnt out. Having Sierra and Reece in school again is helping to get some routine into our lives, which is very helpful, although it is hard to not be able to lounge around the house and sleep in until we please anymore.

Sierra is happy to be back at school with her friends, and I know it is good for her to have some normal life things going on. We aren't focusing as much on her academics at this point, though of course that is important. We will work really hard on that once her treatment is over, but for now, we want her to just do as much normal stuff as possible without overwhelming her. Now for picture overload:

Excited to get to work on the molding for her prosthesis.

She had to wear this funky unitard thing, here she is all wrapped in the molding material.

Even though she had been very excited to get started, she was not thrilled by all of the touching an maneuvering that went along with molding.

She was very happy to get back to our room afterward.

Waiting for the first fitting.

Smiling as the upper piece is fitted.

Both pieces on.

Sierra's 3 feet:) she was excited to see the knew foot that would be on her prosthesis.

trying on the temporary prosthesis, once some hardware had been added. She was not a happy camper for much of this part.

Standing up on a jig for the first time, not that she was actually doing much standing, her hands did much of the work, but she was in the position:)

Passed out cold on our way home from Portland.

 

First Day of 3rd Grade

 

Sierra was very excited to go back to school today. She woke up early and kept bugging us if it was time to leave yet. I know she is so happy to be able to see all of her friends, and to get to be like the other kids for a change. She is disappointed that she wont get to go to school every day, but hopefully by January she will be back full time.

All set in her class room, Her teacher's name is Mrs. Dempsey(forgot to take a pic with her)

Sierra is so excited to be in class with her friend Seiya, they were in 1st grade together and are back together again:)

Chemo Again

I have been so bad about blogging, just wanted to give a quick update. I will try to do some better posts once we are home. Not much has been going on, just the same old chemo routine. Sierra had her Methotrexate on Friday evening so we are now just waiting and keeping her busy until she clears it and can be released. She has handled it very well, with only one round of nausea and vomitting last night, she usually doesnt get sick with this chemo, but she has been eating so much more than usual, thanks to an appetite stimulant, so she might have just had too much in her belly. We are expecting to go home tomorrow morning. Sierra starts school on Wed. and is very excited, we are hoping she will be able to make it to a few days each week now that we have the chemo routine down and know when her good days are. She should be done with chemo before the end of the year, and we hope that staring with the knew year she will be back to school full time. So, pics and some more detailed posts to come.

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.

Bad Blogger

I have been so bad about updating the blog, I am so sorry. We have had a very busy household this past week. On Tuesday we had friends from Texas fly in and we wanted to squeeze in some fun with them before Sierra had to head to the hospital on Friday morning. we got in a lot of playing and had some fun a the the lake. Sis checked in for her 9th round of chemo on Friday morning. Dave took her for this weekend, since my friend is still visiting from out of town, and she has been doing amazingly well. She got started on her chemo at around 5:30 on Friday evening, a bit later than usual since we had some issues with insurance covering her chemo, not sure why that happened, but it eventually got worked out, and chemo went on as scheduled. Dave has kept me posted on how she is doing, and she is definite;y having an easier time with this dose than the last. She hasn't been moody or irritable at all like last weekend, I am so glad for this, since I feel a bit guilty for having to be away from her, at least she is feeling well. I wasn't able to be there to speak with the doctor at her appointment, but Dave said they told him that Sierra's tumor necrosis, was at 60%, which isn't a good response. generally they want to see over 90%, so we may have to make changes to her chemo regimen, but that will have to wait until I can be at the next appointment and really find out exactly what is going on. Also, she has some tiny spots in her lungs, that have always been unconcerning, at least they have told us that they are way smaller than anything they would be worried about, and they aren't growing, but Dave said that the oncologist is now wanting us to have them removed, again I will have to wait to fully update on this until I can speak with the doctors myself next week, but for now this is a scary thought for us. Lung surgery seems like such a big, scary thing, and we were hoping to avoid, so as soon as I know more, I will let everyone know.

For now we are happy that she is feeling so well. She should be released some time tomorrow and then goes in on Wed. morning for her staple removal, which should only take less than 30 min, and be relatively simple, though she will have to be put under anesthesia for it, so that is scary enough as it is. She is doing better each day with pain, and got her wheelchair on Thursday, I will put pics up soon.

Updated Pic

Here are a few pictures of Sierra from our most recent hospital stay. She had her bandages redone on Friday, and now has much less bulk around her leg. She was pretty freaked out when she caught a glimpse of the staples, and really wanted that part covered up again. but once it was all re wrapped, she was very proud to show off her foot. She loved having her foot out of the dressing, and was walkering around the floor showing everyone how she can wiggle her toes. She still isn't allowed to do much, but she likes that she has a bit more freedom, and I like that her clothes fit a bit better, without all the extra padding. She seems to already have pretty good dexterity with her ankle so that is great, in my opinion. She will need to be able to get it to basically straight, and she is pretty close to that, if she isn't straight already. I don't know how much longer it will be until she can really start doing some physical therapy to strengthen her for a prosthesis, but I know she will be ready to work when the time comes.

We Are Home

Sierra cleared her methotrexate this morning and we are now at home. She had a fairly good time this go around, no nausea or vomitting. The hardest thing for her was the moodiness. She has never struggled so hard with mood swings before with this particular chemo, but this go around she had a really hard time being happy after the second day. She was moody, and grumpy, and even downright rude at some points and she couldn't control it. I felt so badly because she was asking me why she can't be happy and was upset with herslf for not being able to cheer up, which only perpetuated the cycle up grouchiness. She woke up happier today, so we only had about 36hrs of grumpiness. She was so anxious to get home today that she started removing the tape from her port access on her own, before the nurse could get in the room. She goes back for her next dose of methotrexate on Friday, so we will be having some fun time before that happens. We have family friends coming into town for a visit and Sierra is very excited to see them. We are still waiting to hear back on the tumor necrosis, but it should be next week sometime for sure.

And We're Back

Sierra and I are back at the hospital, she got her methotrexate today and now we wait for it to clear. She didnt have a very long break from chemo, but the sooner we get through it all, the sooner we can get back to some semblance of normal life. So far she has been handling this chemo well. She started to feel a bit nauseated, but Benadryl helped that out.she had a visitor from one of her best friends at school and she was so happy to see her, she was a bit loopy from meds, so she was completely uninhibited about showing how happy she was to see Seiya. She was holding her hand and hugging on her arm and being super snuggly, it was so sweet and got both me and Seiya's mom tearing up. She is eager for company this go around, so anyone who has felt like visiting, but hasn't been sure about, come on down. Call me, text me, email, or facebook and  we can figure out a good time, or just stop by, we are pretty flexible, but be warned, you may end up with your nails painted:)

Back to the grind

Sierra really didn't get much of a break the past 2 weeks. We managed to squeeze in a few days of fun, and she has been feeling pretty good for the past week, but now it is time to head back for more chemo. At this point, until we hear back about the tumor pathology, we will just continue on the regular course. So we go in today for her 8th round of chemo, 5th dose of methotrexate. She will be going in for chemo for the next 3 weeks. In the past she has handled this chemo fairly well, and hasn't ended up having to deal with much nausea, so we are praying that remains the case. We are also praying that she clears the methotrexate quickly so we can get back home to prepare for our friends coming into town. My best friend will fly in next week with her 3 kiddos to hang out with us and Sierra is so excited to spend some big girl time with her oldest, Natalie, who is also 8. Thank you so much, to everyone who has been praying for us and for Sierra. Thank you to all of those who sent cards or gifts to Sierra over the past few weeks and months, they really brighten her spirit and help distract her from the difficult things she is going through. All of the support from our friends and family really help us get through each day.

Always smiling

We just got home from an impromptu outing to see Ice Age Continental Drift. Sierra and Reece had a blast. The movie was really cute and had some funny parts too. It is fun to get to some things that feel "normal" even during all that is going on.

Picture Update, Oregon Zoo

Here are some pictures from our trip to the zoo on the 4th of July. We had a lot of fun.

Just arriving.

We were able to rent a stroller for Sierra, luckily, since her wheelchair that had been borrowed from Shriners was too big to lug around in the van.

I love this shot of the seal.

Giraffes.

Evelyn was trying to call the giraffes over to her, so cute:)

Hiding in a little cave with our friend Tempe.

A little head bump from the male lion, then he sat down right in front of her, guess he wanted in on the photo-op.

Group shot with some cousins and friends.

Sierra says the elephant was her favorite animal to see at the zoo.

Little cutie.

Reece and Evy snuggling up to some cheetahs.

On the train ride, she had such a blast all day, and was feeling so great.

Home Finally

We made it home Friday evening about 6:45pm. It was so nice to be back in our own beds last night. Sierra did amazing on the drive, only complained about being uncomfortable a few times, and it wasn't her leg that was bothering, it was, as she put it "her boney bum". She has very little extra meat on her bones, so halfway through the trip we had to add a little more cushion to her seat, and she felt much better from then on. She is handling her pain better and better every day, she is so amazing. She is getting around the house with her walker when she needs to use the restroom or change rooms, but she mostly hangs out with her leg up at this point. We need lots of time for the vascular work that was done to heal, so she isn't allowed to be up for long before she has to sit back down and raise her leg. She is doing most of her moving around on her own and just has one of us support her leg for her until she gets standing or when she is working on sitting down. She has high spirits and is feeling so good right now while she is off of her chemo treatment, she wont get too long of a break, only a few weeks and we will be back for more, but we are enjoying having her feel so well. She is eating really well too, she has no feeding tube right now, so that is a good thing. She is constantly asking for things all day long, and what she wants, she gets:)

 It is going to take me a while to post pics from our time in Portland, don't want to over do it, so i will just work on posting pics each day and keep it to the best ones. Today will be some pics from our ocean trip.

These pics don't want to cooperate for me to label each of them, but I think you get the idea. They are all from our trip to the ocean. We went to Seaside, and we all had a blast. The last pic is of the kids on the Tilt-a-whirl with Dave. They love going around super fast.