Monday, June 25, 2012

Low Counts

We are back in the hospital with low blood counts again. Sierra had a low grade fever at home last night so we came in to the ER for antibiotics and a counts check. I knew she would be low, and just planned to be admitted, and we were. We had a super long wait in the ER this time though, and didn't get into her room until almost midnight. She had a rough night, lots of nausea and some vomitting, and a hard time sleeping. She woke up way too early and has had a generally hard day for her. She is getting a red blood transfusion now since her hematocrit was low today, and she is on more anti-nausea meds, so she is feeling a bit better. We are expecting to be here until her counts recover, hopefully they recover by the weekend since we are supposed to be leaving for Portland on Sunday.

Friday, June 22, 2012

At This Moment

Getting vitals done for her check up today. Down a liitle in weight, but she hasn't been on feeds for the last week. She threw up her feeding tube last night so that is another thing she will have to get done today.


Thursday, June 21, 2012

Out Of Routine

Sierra had an extra dose of Cisplatin and Doxorubicin this Sunday and Monday, instead of getting it after her surgery, she now has one less chemo to do after surgery. She handled this round of chemo fairly well, she did have a few episodes of nausea and vomiting, but not nearly like the last few times on this protocol. We gave her a few anti-nausea meds this time round the clock, she was getting meds every 3 hrs, plus one that she got twice a day on top of that. The 2 meds were Ativan and Benadryl. She loves being on Ativan because it makes her dizzy and loopy, she can be soooo funny on this medication, the benadryl however makes her incredibly moody and grouchy. So, needless to say, we had a few days of ups and downs as far as Sierra's behavior goes.
We are still in the process of getting everything worked out for Sierra's surgery to take place in Portland. At this point her insurance should be covering the cost, because they recommended that she go to Portland, but we are trying to cover all of our bases because Sierra HAS to get this surgery and it HAS to happen on time. After her MRI, and the doctor thinking he may still see growth, she has also had a PET/CT scan done, which the doctor said looks like there are definitely some spots that have been killed, but that some spots may still have growth. We wont know anything for sure until the tumor comes out and they run all of the pathology on it. So no firm answers until a few weeks after surgery.
We are very blessed by our family, friends, and community. A pizza place in town, Pete's Pizza, threw a fundraiser for Sierra yesterday, and donated half of the whole days profits to her benefit account. We were able to stop by, since Sierra had gotten out of the hospital earlier in the day, and it was so amazing to see all of the support first hand. We had several people come over and say that Sis and our family were in their prayers. She wasn't feeling very well, and was in a pretty grumpy mood so we didn't stay long, but it was nice to be able to stop in and eat some yummy pizza. Sierra actually ate a bit, which is always nice.
Sierra is feeling pretty good now, she is happy to be at home, and was really excited to get to sleep with Gram-me-ma, my mom, last night. She did have one bought of puking, but other than that had a good night. We are expecting her blood counts to drop over the next few days, and we will likely be back in the hospital when they hit rock bottom. She  always seems to get a fever and need to be on IV antibiotics until her counts recover. For now we will enjoy getting to spend a few days together as a family.

Here is a group pic from Sierra's birthday party:)

Monday, June 18, 2012

Surgery Drama

Sierra had an MRI yesterday to check on the affect of the chemo on her tumor. Her doctor told me today that her tumor still appears to be growing even through all of the treatment. It is possible that it only looks this way(that is what we are hoping for) or it is possible that the chemo she has been on hasn't been very affective and she will be put on some additional chemo regimens after her surgery. because of the possibility that her tumor is still growing and the cancer cells aren't dying the way the docs would like, we really need to get the tumor out of her body as quickly as possible. We have been told that if we can't get Sierra's rotationplasty surgery figured out by the beginning of July, that she will have to have her leg amputated. We are not going to allow that to happen. She will have her surgery done, though it will now be done in Portland. I have talked to the surgeon who will preform it, his name is Dr. Krajbich(pronounced Cry beck) and he has done over 50 rotationplasty surgeries. He is having his nurse coordinator call me tomorrow and see what we can figure out for him to do the surgery. This is the surgery she needs, and we will make sure it happens for her, there is no other choice, in my mind.
Sierra will also be having a PET/CT scan tomorrow of her whole body, maybe it will give us some more answers, maybe not. I really don;t know. We will know more about whether her chemo protocol will change after her tumor has been removed and it has been tested for tumor necrosis(death). If it is over 90% necrosis, we will continue with the protocol she has been following, if it is under, she will add 2 more chemotherapy drugs to her protocol and a few more months of treatment.
Please send lots of prayers our way, prayers that Sierra will be able to have the rotationplasty surgery done at the beginning of July in Portland, prayers that she will heal and recover well, and prayers that her tumor necrosis will be over 90%.

Party Pic

Most of the pictures from the Birthday party are on Dave's camera, but this one is my favorite of the ones I got on my camera.

Sunday, June 17, 2012

Surgery Update, Or Not

Sierra was scheduled to have her rotationplasty surgery done on Friday in Denver, but instead, at this moment, we are sitting in her room in the Oncology ward at Sacred Heart getting ready for her next round of chemo. With only a day more than a week until her surgery, we were notified that her insurance wont cover for her to go out of state for a procedure that someone locally can do. We did all we could to fight for her surgery to happen, but with little time, we had no choice but to get her going on her next round of chemo while the doctors work out the details for her to have her surgery done in Portland. We cant go too long with nothing happening for treatment because of the aggresive nature of this form of cancer to recur.
We are trying to look at this in a positive way, though it is very hard to be back in a place where we don't know what or when anything is going to happen. At this point we can only guess that her surgery will happen sometime at the beginning of July because we will have to wait for her counts to drop and then recover from this dose of chemo, which generally takes about 2 and a half weeks.
She did get to have an amazing birthday party yesterday though. We planned for a petting zoo to come to the house and they did pony and horse rides. And the kids got to touch all of the animals. Sierra was so excited, epecially when she got to run on the horse with one of the cowgirls. We were so blessed to have many of our family and friends there, Sierra felt very special, thank you. I will have lots of pictures to share once I get home and can go through them all.
So, for now, although we are frustrated that the surgery isn't happening the way it was planned, we are loving the fact that Sierra feels so good right now and we trust that there will have been a greater purpose for things to have gone this direction.

Sunday, June 10, 2012

Bad Blogger

Updating frequently is apparently pretty difficult for me. Here is a quick update. We are in the hospital now after Sierra's chemo treatment Thursday night. This is her last chemo before surgery, so she will have a little break once we go home. She has done pretty well with this dose of Methotrexate, a few vomitting episodes and some nausea, but nothing too bad. She isn't suffering yet from mouth pain, but we expect that she will get some mouth sores. I would love for her not to have to deal with that this time though so we are trying to get her meds into her that help keep the sores away. She isn't  always cooperative about it.

We still dont have her counts back from her blood drw this morning, but we should be going home sometime today or tomorrow. Then we will have a week and a half before we leave for Denver. We are going to try to squeeze in some summer fun, like Silverwood, since Sierra wont be able to do much when we get back.

Sunday, June 3, 2012

Catching Up

A lot has happened since my last update. Sierra did really well with her methotrexate this time around, she is such a little stud muffin. No nausea at all, and she was wanting to be up playing the whole time we were there. We were successful in getting her NG tube in on the second try, though she did end up throwing up on that go around too, she soldiered through and we got it into place. She had a hard time getting used to it, and was feeling pretty gaggy from it for about 12 hrs or so, and was worried to try to eat or swallow anything, but after that she did really great. Sierra had cleared her methotrexate by Saturday morning so we packed up and headed home. She got to have a special visit from a friend from church who showed her how to do eyebrows and did some nail polishing and just had a fun time, thanks Jill! Sierra is already asking when she can come over again.
Since Sierra has an NG tube, we were given a new pump and formula to give her so she reaches her needed calories every day. I am so happy to be going this route, rather than the IV nutrition, IV nutrition is so much scarier, having to worry about being sterile and sending things directly to her heart. With the NG tube it is so easy, just dump the milk in the bag, hook it up to her and let it go. I can also give all of her meds right through the NG so I don't have to worry about fighting her on some of the icky ones, not that she ever gives me too much trouble, but it is nice to give her a break.
After our special visit on Saturday, Sierra started throwing up. I had given her too large of a quantity of formula and she got an upset stomach, oops. She ended up throwing up her NG tube out her mouth and I had to quickly untape it and pull it out through her nose. She was really upset knowing she would have to have it put back in. We ended up going back to the hospital and she did so well, she fought us at first, but as soon as we started she just sipped on water, then did some deep breathing and it was in, I was so proud of her. Now I know not to put so much into her belly at one time, and we will hopefully not have another incident like that.
Today we all got to go to church together, it is always nice to be there as a complete family. Sierra went to both of her primary classes on her own today, and didn't fall asleep like last week:)
After church we went over to the McDonald's near our house where the kids and parents from her school were putting on a car wash fundraiser for her. It was the idea of one little boy who used to be our next door neighbor and was in Sierra's kindergarten class. It was so amazing to see all of the support Sierra has from her classmates at school. They did a bake sale and had bracelets and hairbands to sell also. It was even covered by one of the news stations. We are truly blessed to be surrounded by such amazing people. Sierra loved seeing pictures of herself on the TV.
This week Sierra will be back for her last dose of chemo before surgery, which is now finally scheduled for June 22 at noon. Sierra will get to participate in her schools Jelly bean Field day on Thursday and will go straight into the hospital for her final treatment. I am so glad her doctors were willing to push her chemo off one day so she could participate, I didn't want her to have to miss out.
 At this point Sierra doesn't seem too worried about the surgery, other than that it is surgery. I worry about her being upset by how her leg will look when it is over, but she is mostly worried about the fact that there will be pain. She is so brave and strong, she gives me strength when I see how well she has handled all of this.
We all got our faces or heads painted at the monthly ACCO luncheon  held on the floor. Dave had wings painted on the sides of his head, like Thor, but I didn't get a pick on my camera.
Batman came for a visit too, he gave all of the kids some comic books and a rubber batman bracelet.
Sierra loves to play with this Music maker, she is really good at it too. This was her face when she finished a song, very proud of herself.