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.

POrtland day 11, Surgery Day 7

Sierra is so awesome. She is now working on getting up from bed and into a wheelchair, then standing and walking with her walker. She did so well in the hallway this morning, and the PT said that she has graduated from physical therapy here, and will just need to continue working on these things until we go home. Which should be Saturday, YAY! She is so happy to be able to move around a bit, though it does give her a good amount of pain, she is learning how to move her own body rather than rely on someone to move her, and that helps her to be able to control the pain. She is actually wanting to work harder than the physical therapists want her to, because if she does too much she could end up with swelling, so we are having to reign her in a bit. She is just so proud of herself when she gets going, that she doesn't want to stop. I can't wait until we get back home and I can post a ton of pictures of her, she is so happy, even with all that is going on. There are going to be a bunch of photo posts to catch everyone up on our time here in Portland.

Portland Day 9, Surgery Day 5

Sierra had her epidural removed today, at first they turned it down half way and gave her some oral pain meds, then they turned it off, and eventually, after she appeared to be tolerating it fine, they removed it. She wasn't thrilled about it coming out, and it was a bit of an ordeal to do it because it was so well taped, she hates having tape removed from her skin, and even though they used adhesive remover, she was still quite upset. Once it was done she settled down to watch a movie and has been fine since. Later on they will remove her catheter, which means she will be starting to get out of bed to use the bathroom. I am a little nervous about this because she doesn't really enjoy being moved right now, and it will have to happen several times a day, so we will see how that goes. Reece and Evy had a chance to come visit today for the first time, apparently we didn't do enough prep for Reece because he seemed pretty upset when Sierra showed him how she could wiggle her toes. I guess we were so focused on preparing Sierra, that we didn't realize that it would be a big change for Reece too. He was pretty anxious to leave and didn't want to see her"small leg" again. Dave and I got to meet a little boy who is 4yrs old that had rotationplasty a few years ago, and is now running and playing. Reece and Sierra will meet him tomorrow, and I think it will be a big help to Reece. I am still unsure of when Sierra will be released, but sometime over the next few days, we should be heading home. I can't even explain how excited I am to be in my own bed, with all of my own things. We are so blessed to live nearby an amazing hospital, I can't imagine having to travel long distances for treatment like some families do. Hopefully this is our only long distance trip, and the rest of Sierra's treatment and therapy will be able to happen near home.

Portland Day 8, Surgery Day 4

Sierra is so amazing, she is still doing wonderfully. She still has her epidural in, but I think they will start weaning her to oral meds over the next day or so. Today she will work with Physical Therapy to get out of bed a bit, I know she isn't going to be thrilled about that, but she will do it anyway because she knows how important it is, and I got her a new DS game to bribe her with if I need to;) The dietitian came in to see her today and said that she is looking great, they are happy with her eating, so we aren't going to worry about putting her feeding tube back in at this point. She will have it placed before she resumes chemo in a few weeks. She is so inspiring, even with all that she has been going through, she keeps a smile on her face. We love you Sierra!!!!

Portland Day 7, Surgery Day 3

Sorry I haven't been able to update as frequently as I would like. We don't have Internet access in Sierra's room, so for me to post an update I have to leave her and can only do that when Dave is here to be with her. Sierra is doing amazingly well. Her epidural is keeping her pain free. She is eating a fairly good amount, and she has been watching movies nearly nonstop.We did have some trouble with her feeding tube, and after 2 attempts to reposition it, and X-rays to check if it was in the right place, we found out it was kinked so they just removed it. If she needs to have it put in later on, she is a pretty good girl about it, so for now she gets to go without it.
The drain tube that was in her leg was removed today, she was really anxious about it, but it was relatively simple, and she didn't feel any pain. They plan to start weaning her from her epidural soon and we will start work tomorrow on getting her up and out of bed for a bit. At this point she only complains when she has to be moved and repositioned, so it may be a bit tricky getting her out of bed, but she is a tough girl. I will try to upload a few pictures this evening when I go back to the Ronald McDonald house to sleep.

Portland Day 5, Surgery Day

We arrived at the hospital at 5:30 this morning and they drew labs to be sure Sierra's counts were still looking good. Her ANC was almost 2000, hematocrit(red cells) was at 37, and her platelets were at 113. So all is looking good. We waited for a really long time, Sierra actualy went back to sleep as soon as they brought her some warm blankets, and finally they were ready to take her back just before 8. I, of course, broke down a little bit. She started to get upset, but Daddy gave her a blessing and she was perfectly fine afterward to take a ride on her bed down the hallway, and she was off. Now we just wait for updates.

Just got our first update: She went off to sleep nicely, surgery hasnt quite started yet.

Portland Day 4

We had an appointment this morning to have Sierra's port accessed and labs drawn to be sure her counts were high enough for surgery tomorrow. Besides having to wait for a good amount of time it was a pretty easy appointment. She did great when being accessed, said it didn't hurt at all. Afterward we went down to the cafeteria in OHSU because Sierra was actually saying she was hungry. Her mouth is mostly healed now, and she is having an easier time eating which is so nice. She had some grapes and part of a cream filled donut and some french fries. We were planning to go to the Children's Museum today, but decided we were all too worn out from the past few days, so we just stayed in and relaxed. We check in at 5:30 fro her surgery in the morning. I got a call that surgery was on, but not from anyone who could tell me what her counts actually were, so I will update that tomorrow, obviously they are good enough for surgery though. She is feeling great and has a good amount of energy. Her body is ready to be strong for her surgery tomorrow and to heal itself afterward. I will do my best to update when I can tomorrow as the day goes on and we are updated. Please send prayers for Sierra to be strong and for the surgery to go smoothly, and also for high tumor necrosis(over 90%).

Portland Day 3

We had a great day at the zoo today. Sierra is feeling more herself and is starting to eat a bit more. We wore ourselves out walking around the zoo, but it was a blast and we were able to meet up with some family and friends that we hadn't seen in quite a while. We are hoping to catch a fireworks show tonight and then we go in tomorrow morning for Sierra to have her port accessed and labs drawn to be sure she is ready to go for surgery on Friday.

Portland Day 2

After a very long day yesterday, we all crashed early and slept in this morning. We didn't wake up until 9am, we all obviously needed the rest.  After a tag team morning getting the kids fed and ready while we showered, we headed out to the coast. The kids were great tavelers for the hour and a half ride, we did a bit of singing to entertain Evy, but the big kids were happy with their DS's, and Sierra played a few stories on her LeapPad. When we got to Seaside, we visited the aquarium, it wasn't all that great, but we got to see some seals and they were really cute and making funny growling sounds that kept scaring Evelyn.
After some lunch, we headed to the beach, it was a bit gloomy and had been raining earlier in the day, but we didnt get rained on and it wasn't too terribly cold. Sierra built some sand castles while the rest of us dipped our toes in the ocean a bit, the water wasnt as cold as I had thought it would be, and Dave and Reece actually got all the way in. We took lots of pictures that will have to wait until we get home and I can upload them to my computer. We did some sight seeing and stopped in a few shops, the kids rode the tilt-a-whirl with Dave and went on the carousel, and we had ice cream cones. On our way home we stopped for dinner at Camp 18 and stuffed our selves to the tops of our heads. Now the kids are bathed and in bed, almost asleep, and the grown ups arent far behind them. Sierra has felt even better today so I know her counts are on the rise, I am bummed that she didnt get to go in the ocean, but she will have other chances for that, she said it was too cold for her. Tomorrow we head to the zoo for a full day of fun. I hope we dont wear the kids out to quickly with being so busy these next few days, they are definitely sleeping well at night though:)

Portland Day 1

Our Portland trip has begun. We left around 9pm, Sunday night hoping that the kiddos would be able to sleep the entire way over. That didn't happen except for Reece, he never made a peep. Evelyn wasn't thrilled about sleeping in her seat and cried a good amount, Sierra slept a bit, but not as much as I had expected. We ended up getting lost twice on our way because our GPS gave us bogus directions, which added nearly an hour to our trip, and we didnt make it to a hotel until 4 am. We tried to get a couple hours of sleep before we made our way to the Ronald McDonald House, but Evy had other things on her mind, she is really not good at sleeping in a regular bed at all.
When we got up for the day around 9am we headed straight to the RMH and guess what, we got lost. That darn GPS is a pain in the rear. Finally we ended up finding it and getting most of our stuff settled into our tiny room. We have a queen bed and a twin size fold out for 6 people. Luckily we brought the pack-n-play for Evy, but it is going to be pretty cramped for the first few nights, then half of us will be sleeping at the hospital.
Dave, Sierra, and I headed to her appointment at 1 and were there for several hours meeting everyone and we are set now for a surgery on Friday morning, we dont have a time yet, but will be checking in on Thursday night, so hopefully it will be nice and early. Sierra has felt pretty good for the most part. She is tired and her mouth hurts her, but she is a tough girl. And today is her 8th birthday. She got a leappad from us and was very excited and I know she is excited for the fun things we have planned over the next few days. Tomorrow we are going to the coast and on the 4th we wil visit the zoo. Our kids have never been to thezoo and I am so excited to take them, lets hope we can keep up our stamina and make it through the next few days.
Keep the prayers coming for Sierra to be strong and comforted during surgery, she is starting to get anxious so we are trying to keep her mind off of it. I will do my best to update each day and keep everyone in the loop especially once surgery day arrives.