Home Again, Home Again, Jiggitty Jig

Sierra was released from the hospital on Tuesday, just 5 short days after having brain surgery. She never ceases to amaze me, I am constantly blown away by her warrior spirit. She has been doing so well since surgery. As soon as she was allowed to eat again after having her breathing tube removed, her attitude did 180 turn. She had been so frustrated from being on steroids and being starving, but once she was able to eat her beloved KFC drumsticks her mood changed immensely. We spent 3 days on the oncology floor, playing Wii, having lots of visitor and doing crafts. She was so happy to be back in familiar territory, and although I hate for her to have to go through more rough treatment, I am glad we will be back with the doctors and nurses that have taken such amazing care of us and have become a second family to us. Next week we will find out the plan for Sierra's new course of treatment, which will include chemo again and radiation to the tumor site in her head. Radiation will be a new experience for Sierra, so i hope it goes smoothly. Thank you to everyone for all of the love and prayers over the last year and especially in the last 2 weeks. I know we are strengthened by them, and that Sierra is doing so well because she has so much love and support from so many people. Pics to come soon.

Home Away From Home

Sierra was moved to the oncology floor yesterday just before noon. She was so happy to be out of ICU and has been feeling great. She is ready to be home, which could happen as early as tomorrow. I am amazed at how quickly she has recovered from a brain surgery, she has surpassed all of my expectations. Hopefully this coming week we will have a lot of answers on what her treatment plans are going to be in the months to come.

Update

I knew I would fail at keeping this blog upated. Facebook is just so much easier. Sierra has done amazing sinceh her surgery, she was kept under sedation and intubated for about 24hrs after surgery, but would wake up for small amounts of time and try to communicate with us. She couldn't talk because of the tube in her throat, but she would mouth things to me or use hand signals and I did a lot of yes and no question asking. She had an MRI of her head yesterday and the doctor says he got the whole tumor out and that there was minimal swelling, all great signs. We should move out of the ICU today, and have a few recovery days on the oncology floor before being released. Thank you so much to everyone that has been praying for our family, Sierra specifically. We know we have so much love and support around us

Brain Surgery

Sierra is in surgery now, she is doing really well. Now we just wait. Thank you for all of the prayers.

Bad News

Though I hate to write it, Sierra has relapsed in her brain. She had a seizure on Monday night which alerted us to the tumor  in her left occipital lobe, at the back of her head. Thankfully she has no other spots anywhere else. She will have surgery tomorrow at noon to remove the spot, which is about 2cm and right near the surface of her skull. Afterward she will remain sedated for 24 hrs so they fan do a folow up MRI, she wil be in ICU for a few days and then on the oncology floor for a few days after that. Right now she is feeling OK, she is anxious for the surgery to be over because she doesnt like being in the ICU and she is grouchy from being on steroids to keep the swelling down on her brain. Please send lots of prayers her way tomorow, and I will try my best to be a good blogger and update  as I can.

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.