Monday, April 30, 2012

I Hope This Works

I think I may have figured out how to blog from my tablet. This will make updating from the hospital so much easier, and I will be able to give more frequent updates with fresh info in my mind. YAY!
I am hoping to update every day that we are at the hospital.

Meth #2

Sorry I haven't updated in a while. I can't get my blog to work from my tablet at the hospital, so I have to save up all of the info and post from home.
Sierra had her second dose of Methotrexate on Wed, April 25. We went in for her check up first, where they access her port and draw labs to check her blood counts and make sure she is well enough for treatment. These appointments take a really long time, we got in at 10, had her labs drawn around 10:30 and didn't even see the doctor until around 1. Luckily Sierra is pretty happy to play in the playroom, and sing songs with the music lady that works there.
When we finally got called back to speak with the doctor, he asked how she had been feeling, which had been great up until the day before, when her mouth started giving her trouble. The Methotrexate is known for causing more mouth sores and pain. The doctor considered postponing her treatment for a day or 2 to give her mouth some time to heal, but decided against it because of her protocol, they really want to try to keep her on schedule with her chemo, in hopes of killing the tumor more completely before removal.
Sierra got her wig on Thursday, and it perked her right up, for about 5 minutes, she really likes it.

We were admitted and she was put on fluids to stabilize her PH before she could start the chemo. She didn't even start treatment until 9:30 at night. We were able to keep the nausea at bay these round as well, besides one short stint on day 3, but luckily no vomiting. We are struggling to get her to eat anything though, which means her weight is starting to drop. She started out, before treatment, at about 41lbs, but was down to 36lbs, when we checked into the hospital Wed. We really don't want her weight to go down much more, she needs the calories and energy to keep her body fighting.
She did quite a bit of playing this time around, especially playing Mario on the Wii. Her attitude was really crummy on day 2, but improved from there and she has been fairly happy and cooperative since then.
                 Riding her pole                                    Popsicles help with the mouth pain
We have had a few talks with her orthopedic doctor about surgery options, and will be having a final meeting with him soon to decide what we want to plan for. Her surgery will likely take place mid June, and depending on the surgery we decide on, we will get to go to a hospital in Portland to have it preformed.
Passed out sitting up
We haven't talked much yet with Sierra, but we have 3 surgery options. None of our choices are great, but we are hoping and praying that we will make the right decision for Sierra. I will outline a bit of each of our options, but we haven't made a final decision on this yet.
Option one: amputation
Because of the location of her tumor, this would be an above the knee amputation, around mid thigh, and she would use a prosthetic to walk.
Option 2: Limb salvage surgery
In this procedure, they remove the tumor and replace her bone with titanium, or cadaver bone. She would have a basically normal looking leg, but would lose a lot of function, and have to endure many more surgeries for lengthening her lag. There is also a high risk of infection with this procedure.
Option 3: rotationplasty http://www.youtube.com/watch?v=njJUcTbR2SY
While this surgery isn't necessarily aesthetically pleasing, functionally it is a good option. Basically Sierra's knee would be removed, and her lower portion of leg would be rotated so that her thigh and calf meet, and her ankle becomes her knee. She would still use a prosthetic, but would have much more control, and thus more function, basically changing from an above knee amputation to a below knee amputation..

Obviously we have a lot of choices to pray about, but I know we will be guided to do what is best for Sierra.

Saturday, April 21, 2012

Methotrexate Success

Sierra went in for her second dose of chemo on Wednesday, April 18th. It was her first dose of Methotrexate(M), we were told some kids handle it much easier than the Cisplatin and doxorubicin that she received for her first treatment, and we were lucky that Sierra was among them.
Waiting room before being admitted.

Opening her "little wish", she got 3 barbies, a new DS game, and Break the Ice game.

When we got into her room on Wednesday, we were visited by one of the volunteers who comes by each week. He was a magician, and Sierra was really impressed, so was I. He did some fun tricks for her, and then her help do a few also. It was really sweet, she can't wait to go back next week so daddy can be there too.

Ryan the Magician

Before starting her M, she had to be on fluids for a few hours, they accessed her port(which she hates, this is when they put a needle into the port they placed just under the skin on her chest, where they draw blood and give meds) and hooked her up to an IV. They changed around her anti-nausea med this time, which was very successful. She never once got nauseated, and had no trouble with appetite. The chemo ran for 4 hours, and then they continued with more IV fluids to flush the chemo from her system. The first night was rough because Sierra had to go potty so frequently with the amount of fluid they were pumping into her, she was getting quite frustrated and really just wanted to sleep. She was also a bit moody since they gave her a steroid as one of her anti-nausea meds.

First dose of M.

Thursday morning she was feeling great, and eating well. Grandma and Grandpa Higbee brought her some Cinnamon Toast Crunch to the hospital so she could have the cereal she was asking for, she also got to have a McDonald's cheeseburger for lunch 2 days in a row. We have been told to let her eat whatever she wants to help keep her weight up:)
She got to make some pillowcase on Thursday also. She picked out a Littlest Pet Shop one for herself, and made a Spiderman one for Reece, and an Elmo one for Evy.
Sewing her pillowcase:)

Thursday evening I taught her to crochet a chain, and she quickly became a pro. She has been chaining away for the last 2 days, I think she is ready to take on the next step:)

Figuring it out.

So proud of herself, she has gone on to make this chain at least 10 times this size.

Saturday morning, before being discharged, the WSU football team made a visit to the Children's Hospital. Sierra got an autographed poster, and got to take some pictures with some of the team. She was pretty timid when they came into her room, but was all smiles.



Evy even got in on the action, high fiveing a few of the players:)

I feel so blessed that Sierra has felt so good throughout this treatment, I know it is because of all of the prayers that have been said for her. She will go back to the hospital for the same protocol next Wednesday, and we pray that she has the same outcome. For now we are happy to be home, and happy to be able to be together. Thank you everyone for all of your love and support, we couldn't do it without you:)

Tuesday, April 17, 2012

The Day Before


Sierra and I head back to the hospital tomorrow for her next treatment. She will be receiving a different form of chemo this time called methotrexate. Apparently some kids have far less side affects with this than the treatment she had a few weeks ago, I hope that is the case for Sis. She has been feeling so good lately, I hate to have to take her in knowing they are going to put poisons in her body that will make her sick. Being a parent is about protecting our children from pain and harm, but even knowing that in the long run they are helpful, it is hard to have to see her suffer.

Sierra was able to go to school for the last 2 days. She didn't stay all day, but she was happy to spend time with her friends and be "normal" for a while. All of her friends were so sweet with her and very helpful and caring. She got to share with them a "small moment" of what she has been dealing with the past month or so, of course I couldn't help but record it:) Apparently I can't upload it, I will have to try again another time:( But here is a cute pic of her doing her math workbook.

Friday, April 13, 2012

A Great Day

It is hard to remember to update my blog when everything seems so normal at home. Right now Sierra is feeling great, her appetite is up and she is feeling like her old self. She is playful and happy and generally in a good mood. She goes back to the hospital on the 18th for her next treatment, but for now we are happy to be spending these days of nice weather together as a family. This morning the kids and I took a walk over to my sister Meghan's(Meme) house. Well actually, the kids rode four wheelers while I walked. It was really nice to be able to do something normal and the kids had lots of fun getting out of the house. Evelyn doesn't have four wheeler, so instead of breaking out the stroller she got to get a ride from big sister. She loved it.

Auntie Meme has a trampoline so the kids played on it for quite a while and had lots of fun. Sierra had fun posing for lot of pictures, she can be quite the ham:)

Such a great pic of all 3 kiddos.
Sierra has lost almost all of her hair now. I asked if she wanted us to just shave the rest and she said NO, so for now we are just going to let it fall out. She has a few hats and bandannas, and she goes back and forth between wanting her head covered and feeling confident enough for it to be uncovered. I think she looks adorable, but I think it will take her a bit to get used to it. I am hoping she will feel confident enough to wear headbands with big flowers and bows on them and just show off her cute little bald head. 

Love this pic:)

I am planning for her to go to school for a couple days next week before her treatment on Wednesday, she hasn't been back since she started chemo. I hope it will go smoothly, I am planning to just go with her so I can help her if she needs me to, and she has been very clingy to me lately anyway so I am imagining she wouldn't want me to leave. The counselor at her school said she would have a little talk with the class to prepare them for her returning and explain a bit about what is going on with her. I am a bit nervous about how they will respond to her. I don't think I should be, her class has always adored her, but I guess it is just my mommy instincts wanting to protect her and make sure all of the other kids are nice to her. 

Wednesday, April 11, 2012

Feeling Better

By Monday, Sierra was feeling a bit better, though her counts were still way down. She was smiling and wanting to play, which was a nice change from her feeling so rundown and tired. She got a new game for Easter called Headbanz, it is a Disney game, where you have a character on your forehead and ask yes and no questions until you figure out who it is. She really likes and we played it several times. She also got to meet the art therapist. He is from Kenya, and comes twice a week to the oncology unit to do art projects with the kids. She had a lot of fun, though it took her two tries because she got sleepy and needed to rest part way through her project. It turned out really nice, and then she also painted another picture to give to the art therapist


Around 3pm on Monday, when Sierra got up to go potty, she started to have a nose bleed. It wouldn't stop so they ordered platelets to help lot her blood. It wasn't considered an emergency situation because she wasn't gushing blood, but she was saturating the Cotton that they shoved up her nose, and had to have it plugged for a good couple hours. Around 8pm the platelets finally arrived, they had ordered them from another hospital in the area because she has a negative blood type, and they wanted to find the best match possible.


Getting her first platelet transfusion(4-9-12)



 On Tuesday she was feeling even better than the day before. And she lost a tooth, it was her other front top tooth, and it just feel right out in her mouth. She thought that was pretty hilarious. She also thought it was funny that when I took her picture with her newly lost tooth, she got to see the card she had on her head and didn't have to guess it that round(she is such a cheater;)) She also had a red blood cell transfusion on Tuesday because her heart rate was going up and she was looking pale.
On Wednesday Her ANC was up to 748 so the doctor said if she would eat something she could go home. She hadn't eaten much for most of our stay, but she ate some french toast and applesauce. Her mouth still gives her some trouble so she will only eat very soft foods at the moment. She was so excited when they said she could go home. Her hair had started to really fall out on Tuesday, and she was starting to look a bit thin around the front. She actually pulled out a good amount a bedtime Tuesday night because she likes to twirl her hair when she is relaxing, she collected a good size hairball and wanted to keep it.



Posing with her monkey buddy, she has a bigger one that will go to school and take her place when she can't be there. A very cool idea, and something provided by the hospital.

Having a visit from Bubba and Evy on Tuesday, eating snacks and watching cartoons. The music lady came by shortly after I took this pic, and they got to play instruments and sing songs, they really had fun.

Sunday, April 8, 2012

Emergency room



Sierra had her first Emergency room visit since starting chemo, she made it a whole week. Friday afternoon her fever started to rise, so I called her oncologist and he said to bring her in.Luckily, since she is a cancer patient, we don't have to wait in the big ER and are immediately taken to a room, though we did have to wait there for quite some time, but at least it is private and has a TV.

Mom and Sis in our masks, checking in to the ER.

 She was accessed shortly after we got there(meaning she had a needle put into the port on her chest so she could be started on fluids and have her blood drawn) she was really worried about it hurting, the only other time she had been accessed was when they first put the port in and she was anaesthetised for that. She said it hurt less than getting an IV so hopefully she wont be so worried about it next time. After a few hours we were moved up to the oncology floor, it was around midnight, and we were able to finally go to sleep. Her ANC(white blood cells) was at a 28, which is very low. She has to be over 200 to go home, and have no fever for 24hrs. On Saturday morning they rechecked her ANC and it was at 48, so it looked like we were on the mend, but when they checked them again this morning they were down to 18. She felt really crummy all day Saturday, and didn't want to eat all day. She will drink ice water, and ice milk, but that was it.

Sis with her ice milk.

 Today was more of the same, she didn't even get excited for her Easter basket, I couldn't get her to smile for me at all. We decided to bring the kids up to visit her so we could all be together as a family for a while on Easter and she finally started to brighten. She even wanted to get out of bed and ride in the wagon to the play room and play some Wii. It was nice to see some light in her eyes, though after we left she has basically been sleeping, we must have worn her out. Dave is staying with her tonight so I can spend some time with Reece and Evy, but I am always worried when I am away. Hopefully when I go up tomorrow morning her counts will be on the rise.
No smiles on Easter morning, she loves snuggling with her big bunny though.
Finally feeling a bit better, she even ate a few pieces of her candy.

Friday, April 6, 2012

PT


Sierra had her first physical therapy appointment yesterday. She has been holding her leg at basically a right angle since the biopsy, so her muscles have tightened, behind her leg, and at the top of her hip. She is also afraid to straighten it because of the pain she was feeling before and after the biopsy. She was very excited when we got into the therapy room because they had a big swing, the therapist and her got on it, and they basically just talked while the therapist worked on straightening her leg as they swung. It worked quite well to keep her mind off of the leg so she could relax and just let go. Then she layed on her belly, propped up a bit with pillows and played Break The Ice, and Hi Ho Cherry Oh with Reece. This allowed her hip to stretch and also the therapist was behind letting her foot slowly relax toward the floor as she played, she had it basically straight by the time they were done.(the pic was just as they finished cleaning up and she had just started to move, so leg was actually a bit more straight than in the picture, and much more relaxed, I was just too slow). At this point we are aiming for her to go twice a week when she isn't in the hospital, when she is in the hospital they have a PT who can see her most every day.

As far as how Sierra is feeling, she is not feeling great. She is definitely tired, and has napped on and off the last 2 days(not uncommon as her blood counts go down) and she isn't eating very much(also to be expected). She is also complaining of her tummy bothering her, kind of like her tummy is cramping and it comes and goes. I feel awful when she says her tummy hurts because I can't do anything for her besides telling her to try and go potty and see if that helps(which it often does) she would just rather not have to make so many trips to the bathroom because it is hard work for her to get around. Her attitude has been touch and go, sometimes she is really cheerful and wants to play, but other times she is super crabby and yelling at everyone about everything. We are trying to be patient with her, and understanding, while also making sure she realizes that she shouldn't be behaving that way. It is also hard on Reece because he is so used to playing with her all of the time, and she has little patience for him right now, so he gets upset that she doesn't want him around. We are trying to play with him a bit more so he isn't feeling left out or neglected. As for Evy, she isn't too phased by anything at this point, she is pretty easy going and other than causing some mischief here and there is a pretty good little girl.

With Easter coming up this weekend, we are hoping to be able to make it to church and out to my Dad's for a get together, but that is all up in the air depending on how Sierra feels. I don't want her to miss out, but also don't want to push her beyond what she can handle. Please pray for her to get through these days of feeling icky so she can get back to feeling more like her old self.

Tuesday, April 3, 2012

Check up

Sierra had  her first outpatient check up today. She will do this once or twice a week between chemo treatments to track her blood counts. She had to have blood drawn, which they could have done from her port, but she chose to do in her arm.  For today her numbers were great, but they expect them to drop a lot by next week when she goes back in. She met with one of the physical therapists and did a lot of stretching, and some walking exercises, they drained her physically because she fell asleep on the doctors table afterward. We are going to be set up with a physical therapist that she will see on a regular basis as well. We talked with the doctor about different ways to keep her food intake up, since she gets tired and nauseous from the meds, and he said they are going to take a different approach with her anti-nausea meds next time she has chemo, so she hopefully will have an easier time.

She is basically back to her regular self, besides not being able to walk. She hasn't felt sick today at all, and has actually eaten pretty well. She is basically allowed to eat whatever she wants, and anything that sounds good to her, we try to get for her because we want to keep her from loosing too much weight. Tonight it was hamburgers, she was talking to me about them in the middle of the night last night when I woke her to give her meds, and she said she dreamed about them too:) So we grabbed stuff on the way home from her appointment and had hamburgers and french fries for dinner.

Monday, April 2, 2012

Sicky

Keeping her sick bucket close.

Sierra had a rougher time with her second dose of chemo. She was a lot more nauseated, and the doctors kind of struggled to find the right anti-nausea meds for her. They had said on Thursday that she may be able to leave the hospital on Saturday, after her second dose of chemo Friday night, but then she was throwing up all day, not keeping anything down, so we earned an extra night. luckily, by Sunday morning, she was feeling pretty good, and we were able to remove her from her IV fluids. The toughest part of the day waswhen they had to de-access her port, the tape was pretty sticky, and she was still having some pain in her chest and neck. Once that was over, we were free to go. She has been so happy to be home. She did have some trouble with vomiting last night, I woke her at 3am to give her and antibiotic and her anti-nausea meds, and 20 minutes later, she was waking me to take her to the bathroom so she could throw up. She threw up 3 times, so I finally called the doctor, and they said icould redose her anti-nausea meds since she had thrown up within 30min of getting them. Thankfully, she slept the rest of the night, and has felt good so far today. She even ate breakfast with Reece, watching a movie on her new portable DVD player( a gift from the hospital). One dilemma we are facing is that Dave, Evy, and Reece are all sick. Evy has had a cold that she can't seem to kick, and Reece started coughing the day before Sierra came home. We are trying to keep her separate as much as possible, but it is pretty difficult. The doctors did tell us that quarantining her is not necessarily the best idea, she is going to be exposed to things, and just to keep a close eye on her temp, and to be obsessive about hand washing. We are working now on getting her to stretch her leg, and, hopefully, get back to walking. She only has a few months before she will have surgery, and I would love for her to be able to run and play while she still can.
She got to have a visit from a therapy dog names Suki
Happy to be eating again, rice krispies.
Getting "unplugged"
So happy to be going home.
Life cereal, and The Last Unicorn.