Ng tube

Sierra is back in the hospital tonight for her next methotrexate treatment. She is almost finished with this dose, then she will begin a fluid flush  to get the chemo out of her system. She is also healed enough from her mouth sores to have an ng tube placed, so she wont have to be on IV nutrition. The first attempt to place the tube was a big failure. We had talked with her about it, she was supose to drink water and keep swallowing as the tube was going down her nose and throat, but she started gagging pretty quickly and couldn't  stop. She ended up throwing up and they had to stop trying.

They are going to try again tonight after giving her a stronger sedative. Hopefully this attempt will work, otherwise she will have it done in radiology tomorrow.  She has always had a strong gag reflex, but hopefully knocking her out will help.

Besides the tube drama, Sierra is feeling great. She has been playing, was very excited to play Wii, and has been loving watching her cable TV shows:) Tomorrow is a special lunch here at the hospital. The American Childhood Cancer Organization puts it on for the oncology families and staff. Lunch, chair massages and face painting. Should be fun.

Quick Er visit

Sierra and I made a quick visit to the ER today. She started running a fever and the doctor told us going to the ER for antibiotics was the normal protocol. We were only there a few hours, just long enough for them to get blood and urine samples and run a 30min antibiotic. Sierra enjoyed getting to watch some of the cable shows she only gets to watch in the hospital, and was actually kind of upset that she wasn't staying overnight(so glad that she likes being there). Hopefully the fever will stay away and we can have a few more days of family time. We will get the blood culture results tomorrow(they take 24hrs) hopefully there will be no sign of infections. Sierra was feeliing pretty good by the time we got home. Her and Reece changed into batman and batgirl costumes and gave us a little dance show in the livingroom, she is quite the show off when she is feeling well:)

Delayed

Sierra was scheduled for Methotrexate on Wed. All of my facebook friends know that didn't happen, but I figured those who aren't on facebook may think we were in the hospital the last few days, Nope! When we went in to see the doctor on Wednesday, he decided that she needed another week to let her little mouth heal a bit more. The Methotrexate is known for causing mouth sores and he didn't want to pile new ones on top of old ones. Though it is nice to have this week with Sierra feeling almost good as new, we were hoping to avoid any delays with treatment. Not to mention that now she will be in the hospital during the last days of school and have to miss out on field day(I haven't bothered even telling her about field day, so she wont even  miss it, but I will miss it for her).
She is still on IV nutrition, but she was on it for 24hrs before and they have reduced it to 14hrs, so now she is tube free during waking hours for the most part. it is so much easier for her to get around and play. I definitely think I will be ready for my nursing degree after all of this is said and done, I am learning a lot.
David took Sierra to school yesterday, she was able to stay all day, and have Movie day with her class. She loved having daddy there with her and asked him to take her again on Tuesday next week. She was also able to participate in a filed trip for school on Thursday. We meet her class in town where they visited several locations, we only went to the library and bank with them and then had a picnic lunch at the park, but she was happy to be included and to see all of her friends after about 3 weeks of missing school.
I know I have mentioned our surgery options once before,and wanted to post about our final decision and a bit about our plans over the next month or so. Sierra will be having a rotationplasty surgery, essentially the knee portion of her leg will be removed, and the lower leg will be rotated 180 degrees and reattached so that her ankle will serve as her knee. Aesthetically she will look different, but functionally she will be able to do everything a little girl should be allowed to do. While this option isn't perfect(none of them are really great)we know this is best for Sierra. She is a bit concerned about how it will look, but we have tried to help her know that the way it looks isn't important, and that she will be able to do all of the things she wants to do once she is healed. Anyone who sees her and talks with her about it, please be considerate and encouraging to her, let her know we all love her no matter what and will support her. She is going to need a lot of people making her feel extra special until she is able to own this newness for herself.
For the surgery we will be travelling to Denver, this will be a scary and exciting trip in one. Sierra has never flown and is looking forward to it, but we are sad to have to leave Reece and Evelyn behind. Lucky for us that the surgeon doing the surgery works in Denver because we have a lot of family in Colorado, so we will have support in the hospital, where others in this situation may not. We are excited to be able to see some family that we haven;t seen in a long time, and probably some that Sierra and I have never met.
We will be going back to the hospital on Wednesday for her next treatment and then the following week for another, then she will be done with chemo until after she heals from surgery. Please keep her in your prayers, that she will be strong for these next 2 chemo treatments, that she will handle the surgery, that her pain will be manged well, and that the chemo has done it's job on the tumor(we aim for over 95% tumor necrosis to know the chemo is doing it's job).

A couple of baldies:)

11 Days

So, we spent the last 11 days in the hospital, the longest stay for us so far. After a week of zero counts Sierra's ANC finally started going up on Thursday and by Saturday was over 2700.  The hardest part of the stay was the amount of mouth pain Sierra had. She basically didn't smile for over a week because it was too painful, it is so hard to see her that way since she has always been so happy.  Once her counts started going up, her mouth was able to heal. At first she was in more pain because she finally had an immune system fighting all of the infection in her mouth, so they put her on a morphine drip to help with the pain. She had a button for breakthrough pain, and was using it quite a bit on Thursday and Friday, but by Saturday wasn't needing as much pain meds so they started weaning her from the continuous flow to oral morphine. She is still on IV nutrition, which I am getting pretty good at changing out, and I will probably be on my own with it after tomorrow. We are looking into doing a feeding tube through her nose though for the next month or so, it is much better to have nutrition actually going through the gut, should know more about that on Wednesday at her next appointment.
Thursday night the whole family was able to spend some time together at a movie night put on by Bikers Fighting Cancer, it is a group that rides motorcycles around raising money to fight childhood cancer. they provided pizza and we watched We Bought a Zoo. It was a fun time and Sierra enjoyed herself, though she didn't eat anything. This morning she ate a few bites of yogurt, a piece of apple, and a few bites of some bread one of the gals from church brought over to us, so not much, but she is making progress. Right now Sierra is on track to go back on Wednesday for her 3rd dose of Methotrexate, and then the following week for another dose. At this point we are counting on staying on schedule with her chemo, we don't want any delays in her pre-surgery chemo if we can avoid it. It is kind of a bummer to have to plan to go back to the hospital in only 2 more days, but we know we have to do it, so we just suck it up and try to squeeze as much family time into the next few days as possible.

She was so happy to get this stuffed bat, but in too much pain to smile about it. Art is one of her favorite things, they have lots of fun projects in the playroom.

She had to have an IV put in her hand because she had too many medications, along with her IV nutrition and morphine to have all of them going through her port, she wouldn't use her hand at all, they removed it after a few days when the vein blew(they wanted to put in a new one, but Dave said no since she was going home soon and would take meds by mouth if needed)

Her amazing pump pole, the most she has ever had, 5 at once.

Sierra had a visit from a therapy dog, Maya.

Her first smile in days(Maya had farted).

 Painting Tom, the janitors, nails, she has the staff wrapped around her finger:)

We picked up "Chubby" Bear to surprise her on Saturday morning, she was so thrilled, I think he will have to go back to the hospital with us every time now.

Her first head tattoo, rocking the patriotic look. I am going to have to stock up now.

I am so happy to see that sweet smile again, love this girl so much.

Zonked out on the floor with Chubby.

I wanted to say a quick thank you to everyone who has helped us out with watching the other 2 kids or making meals, visiting Sierra and praying for us. We appreciate the support so much.

Week

Sorry for the lack of updates, there hasn't been much happening to update about, just more of the same. Sierra had an ANC of zero up until this morning when it finally went up to 48. Sierra has been doing a lot of resting and watching TV, but not much else. Her mouth has been giving her lots of trouble, she hasn't eaten anything now for a week or so, and went a couple of days without even drinking because it was just too painful. Today she has been taking small sips of water so she is moving in the right direction. We are hoping to only be here for a few more days. Sierra has to be able to take her meds by mouth and keep her temp down with no tylenol for 24hrs. This is our longest hospital stay so far, but Sierra is hanging in there. We are starting to make surgery arrangements,  now looking to happen in Denver, more on that later.

At This Moment

Feeling well enough to do some math:)

Low Counts

After a day and  half at home, Sierra started running  fever Wednesday morning. Anything over 100.5° is an automatic ER visit for antibiotics, but since Sierra's counts were expected to be low the doctor decided to admit us even before we got to the ER, so that she could be monitored until her counts go back up. She and I headed to the ER at 5:30am and were checked in to our oncology room at 7(that is super fast). As expected, her ANC was at zero, basically meaning she had no white blood count thus no immune system, so any sort of fever is a worry because it can mean an infection that she wont be able to fight off. She was started on antibiotics, and fluids, and IV nutrition. Most of the day Wednesday and Thursday was spent watching TV and resting. She did have a small nose bleed on Thursday, but nothing uncotrollable so she didnt need an emergency platelet transfusion.
Overnight on Thursday she also had a bout of puking, which consisted  mostly of mucus and blood since she has nothing in her stomach. Today she did more resting and TV watching, though she did perk up enough for about 10 miutes this afternoon and do some impromptu math problems in her new notebook from her teacher. She had a platelet transfusion today because her am counts came back low. After getting them her fever spiked a bit and her blood pressure dropped and she started chilling, so the nurse had to keep a close eye on her for a little while, but everything went back to normal after a bit. After going to bed for the night  tonight she woke up to puke again, this time there was only a little bit of blood, which is likely from the sores in her mouth and throat. We are waiting now on a red blood cell transfusion, which will go in over 4hrs tonight.
Sierra is being so strong through all of this. She has had a few moments of frustration, but has mostly taken everything in stride. I am so proud of how strong she is to be able to handle all of this really hard stuff.

At This Moment

Back in the hospital with a fever, very low ANC of 20, luckily she is still feeling OK.

Update

Our hospital stay this time around ended on Monday. When I got there to take over for Dave, the doctor came in and said that we could be sent home. The one condition was that Sierra be on IV nutrition at home. So we packed up and came home yesterday, and a home care nurse came out in the evening to teach me all about Sierra's new pump. Sierra has to be on continuous IV nutrition, so her port stays accessed and she is connected to a pump which dispenses her nutrition. It is all set up in a backpack, so she can carry it around. And it works out well to hook it over one of the arms of her walker. After a few days of the home care nurse coming out to walk me through changing the bag, I will be on my own, I did it today, and it wasn't terribly difficult, at least it isn't painful to Sierra, like when I have to give her her Neupogen injections, I got to do the first one today, and it stinks. I have to do it for about another week and I am not looking forward to it.
At the moment Sierra is feeling pretty good. She is still dealing with mouth pain, but it is not as bad as it was because she is able to talk, which she wasn't doing at all last week. Her tummy bug is still ongoing, but not as bad as it was in the hospital, so that is good news. She still doesn't want to eat anything, so we fight her on that all day long, I have to fight to get all of her meds into her each day. We have taken to bribing her a bit, recently she is getting some new Lego sets which she is really enjoying.
Tomorrow she goes back to the clinic for labs and a doctors visit. Hopefully having her on the Neupogen will keep her counts from completely plummeting and us having to be admitted to the hospital again. I think as long as she keeps her fever down that they will allow her to stay home, even if her ANC gets really low.

"Mr Sucky" became Sierra's good friend the other night when she couldn't stop throwing up.

Passed out on morphine.

Sierra decided to take the plunge and shave her head today. She is excited to be able to have it painted or put temporary tattoos on it, and she loves being able to wear headbands with big bows. I think she looks absolutely adorable.

Before

After

Posing with Bubba

Another Day

Not much new today, Sierra is feeling a bit better, definitely having much less mouth pain, we can tell because she is willing to talk a bit more, though she can't smile very well because of the sores on her lips. Her fever has stayed away all day and the doctor is saying if she will eat that she can go home.  I am not sure this is going to happen because her throat is still really bothering her. Trying to give her pain meds before a meal doesnt really work because they make her tired and she just falls asleep before we can get her to eat.
She is being a big trooper and is happy to watch movies and play games. I am so happy that she isn't phased with being stuck in the hospital, she's still just as silly as she always is.

Long Haul

Yesterday was a bit better for Sierra. She is wanting to be awake more often, watching TV and playing her Ds. Her attitude is much better now that the steroids are circulating out of her system, her doc said we are going to try taking them out on her next round and see how she does without them. The bad news of the morning yesterday was that Sierra has C-diff, which is a tummy virus, so she is on contact precautions. Basically, that means that she cant leave her room and all doctors and nurses have to wear gowns and gloves when they enter her room. So far being quarantined hasn't been an issue since she hasn't felt well enough to leave her room anyway, but now that she is feeling a bit better it may get a little more frustrating for her.
With Sierra feeling so badly, her mucositis is really bad, the doctors are predicting that she will be staying in the hospital this time until her counts have dropped and recovered, which is usually 7-10 days after chemo. Generally we would've been able to go home the day after her chemo was done, but since she is needing so many antibiotics and still needing IV pain meds, they said to just plan to be here until her counts go back up. They are giving her a daily med called Neupogen that helps
to recover her white cell counts more quickly so hopefully she wont feel too bad for too long.
With the pain from her mucositis, getting her to eat anything is nearly impossible. Her lips are swollen and scabby, so I can only imagine how her mouth and throat must feel. I was able to convince her to drink a few ounces of pediasure, carnation instant breakfast, and mama milk  yesterday, but she is definitely starting to lose some weight. When I talked to the doc about what their plans for intervention would be, he said around day 4 of not eating that they would put her on IV nutrition and that they wouldn't put in an ng tube at this point because her throat is so raw, they wouldn't want to risk opening up any little areas for infection when inserting a tube.
Yesterday her ANC was at 2000 and with giving her the Neupogen it jumped to 9000 this morning so we are hoping that will help her mucositis to heal more quickly so we can get her eating again.
One blessing in this whole situation is that Sierra likes being at the hospital, she never complains that she would rather be at home. They do a great job here to keep the kids happy and entertained and Sierra loves all of the attention she gets. She often presses her nurses call button and will ask for her favorite things all on her own, a warm blanket and fresh ice water. The nurses say her voice is so cute over the intercom. So atleast for now, she isn't feeling to upset about having to be here, mommy on the other hand is ready to sleep in her own bed tonight and let daddy have a turn on the hard hospital bench.

Benadryl Saves The Day

Adding Benadryl to Sierra's anti-nausea meds worked wonders last night. She was able to sleep, and didn't have any episodes of sickness at all. Hopefully next time she gets this chemo protocol we will be able to avoid any vomiting at all. She is still unwilling to eat much of anything, I convinced her to take a bite or 2 of some cereal, but that was it for the day. She has dropped half a kilo since being admitted this go around, not exactly sure what that converts to, but I think it is about a pound. Not good news since she is already so tiny, and we want to avoid having to do a feeding tube if at all possible, but it may be unavoidable. Her attitude was a bit better today than yesterday, she is still irritable, but not being as mean as she was last night, though she did kick me out of her room when I wouldn't stop asking her if she needed anything:)
She has done a lot of sleeping today, but did manage to play a little bit. She got a visit from a clown earlier who showed her some fun tricks and gave her some bubbles, sadly I wasn't here and daddy didnt have his camera so no pics, but Sierra was cheered up for a while afterward. Not sure when we will be able to go home yet, the doctors will want her to be eating and not needing IV meds for pain, Iguess we will see what tomorrow brings.

I want to also say a big thank you to everyone for their love and support. We are so blessed to have such great friends and family around us. Thankyou for the meals, the help with the kiddos, the cards, and phone calls. And thank you for all of the prayers being given in our behalf, we know that we are being bouyed up, and strengthened by them.

At This Moment

Round 2, Night 2

Sierra had her second dose of Doxorubicin and Cisplatin this afternoon. The plan was for daddy to stay with her so mommy could get some much needed rest. I went home and a few hours later was headed back to the hospital, the steroids that Sierra gets to help with nausea make her really emotional and she needed her mom. Atleast I got to run a load of laundry, take a shower, and, most importantly, spend a few hours with Reece and Evy.
Tonight we are going to try something a little bit different meds wise. She is still getting the same anti-nausea meds as last night, but we are also going to keep her steadily on Benadryl to see if we can let her sleep through the roughest part. I am thinking if we can get her through the next 8-12 hrs with no vomitting, we will be mostly in the clear.
Sierra got to take a bath today which David said she really enjoyed. And she has been playing video games, warching TV and napping off and on. Her attitude is pretty crummy, mainly from the steroids, she has some crazy mood swings that can actually be pretty amusing(not to her, of course). Hopefully we will be home on Saturday and able to stay out of the hospital for about 3 weeks before her next treatment.

At This Moment

Cisplat, Dox Take 2

Well, so much for my intentions of blogging every night now that I can do it from my tablet.
Yesterday started out very routine, we came to the clinic for Sierra to be accessed, have labs drawn, and wait to talk wih the doctor. This process takes several hours, but Sierra is generally happy to be able to spend that time singing and playing in the playroom. When we were finally able to see the doc, he said everything was a go for chemo to start(great news, we want to avoid as many delays as possible).
This treatment is the same as her very first round of chemo, Doxorubicin and Cisplatin given over 2 days. This was the treatment that caused her so much nausea and vomitting, we were hopeful that we could avoid that this time around, her doctor changed her antinausea meds around. We were lucky to be doing the treatment during waking hours because of the hourly required bathroom breaks, so much better than doing them at night.
About 9:30 the puking started and she threw up for almost 2 hours straight. I felt so bad for her. It seemed like she started out sick from the meds and then had so much phlem that she was gagging on it and unable to clear it. She was frustrated because she wanted to go to sleep, but couldn't because every time she layed down she would start gagging again. They finally gave her a suctioning tool to use, which she really likes, and she was able to get sme of the stubborn phlem out and finally get some rest.
She slept fairly well besides having to wake up for bathroom breaks several times, and had a little trouble getting back to sleep afterward, mostly from being frustrated, I think. Her lips are looking pretty swollen today, and we have been trying to keep them slathered with vaseline to avoid anymore tearing, the puking lastnight was so violent at times that her lips were cracking and bleeding, she even gave herself a small nose bleed. I am praying she will have a better night tonight, we may need to change the  antinausea meds again, it would be nice for them to actually keep her from getting nauseas.
We are expecting a few visitors today, hopefully she will feel well enough. She definitely wants to spend some time playing Wii, that was the first thing she asked for this morning before falling back to sleep. I will post picture updates on the days that I am home. Thanks for praying for us.

At This Moment