Yates

Good News!!!

2012-01-23T20:15:00.002-07:00

I spoke with Dr Brockmeyer, the neurosurgeon, today and he had good news for me. He was very pleased with the way Annabelle's x-rays looked. She had a regular x-ray done on Wednesday and then on Friday she had a flex-x as well. The flex-x is just x-rays of her neck while it is flexed. Makes sense, right? So they take the pictures from the side as she tucks her chin to her chest and then as she tips her head back as far as she can.

He said her neck is stable at this point and he doesn't anticipate her needing any surgery. Best news ever! I honestly thought the best we could hear was that it was the same as before, but he said it actually looks better now. Despite all the destructive things we are doing to her body (chemo and radiation) her neck has managed to heal a bit! There is some sclerosis, or scarring, at the c-6 vertebra which shows up bright white on the x-ray. That is where the bone has tried to heal itself so it is very dense with calcium, which makes it show up whiter. So if anything else, it is actually stronger than before.

Of course there is no telling what the future will bring, but Dr Brockmeyer said he expects that it will get stronger and stronger with time. They will continue to follow it closely, but he said she is clear to do regular activities now. She can be a kid again....well, a kid with a paranoid mother that is!

Here are a few pictures from my phone that I took while she was having her x-rays done.

I didn't get any pictures of the CT scan because it turned a little traumatic. I forgot that they won't put the contrast through their central lines anymore, so she had to have an IV placed. After 20 minutes, they finally got one in. The actual poke was no big deal, it's just the build up to it that stresses her out. She likes to watch the needle go right in. Such a brave girl! Anyway, after all that trauma, I had to hold the suction in her mouth (she is back to not swallowing her saliva) and move in and out with the machine. It was highly entertaining for the techs, I'm sure! As a result, I had no hands free to take pictures with. :)

Results Are In

2012-01-19T18:53:00.002-07:00

Sorry to all of those who have been waiting for me to post about Annabelle's scan results. It was a rough night so I am running on very little sleep and I'm not the happiest when I'm sleep deprived. Anyway, without further adieu...

CT of the chest was clear, meaning there has been no spread to that area. We didn't expect there to be, but still it's good to hear that it looks good!

The report from the x-ray of her neck doesn't report any significant change from her last one (August 12th, following induction chemo and before starting radiation) but I'm still waiting on official word. The neurosurgeon, Dr Brockmeyer, is supposed to be reviewing it so that's what we are waiting on. I have a million and one questions for him so I'm hoping to get him up here for a consult. I want to know if he thinks she will need surgery to fuse her spine or even possibly have the C6 vertebra removed and another bone grafted in its place. I want to know whether or not she can do "normal" activities throughout her life. I want to know if she can play basketball or if she has to avoid contact sports. I want to know if her neck is going to snap if she falls down. I want to know if she can jump on the trampoline. I want to know if I dare take the training wheels off her bike or if I should keep her in a padded room her whole life! Your neck is a pretty important part of the body so I NEED to know what I can allow her to safely do. My hope is that Dr Brockmeyer will surface tomorrow and put an end to my anxious waiting. I'll keep you posted...

Finally.....pictures!

2012-01-15T17:23:00.006-07:00

Here are some pictures that I have been meaning to post. Some are from many months ago...oops!

Fishing at home in MT.

My barefoot girl!
The family in Yellowstone.
Annabelle had a meltdown in the car because she wanted Oreos. Much to her dismay, there aren't a lot of stops in Yellowstone Park where you can pick up Oreos!
After locating some Oreos...she was still a grouch.
But Layla was quite happy! (Have I mentioned lately how much I love this girl!?!)
Josh's attempt at a stern face about the whole ordeal.
No picture of me to show how I felt about it all. But if there was, I would be holding a Dr Pepper and a bottle of Excedrin!

She'll do anything she can think of to put off taking her meds!
Creepy/cheesy smile, but cute girl in her Christmas dress. She loved to twirl in it!
My brave, bald beauty in her Christmas dress.

Lights at Temple Square.

Some of our collected items to donate to the hospital.

We were also able to purchase a girly bike for the ICS unit.

Another load of presents ready to go!

The girls were super excited about heading to the hospital to deliver them!
Our biggest trip...
Super cool ice sculptures outside of PCMC.
I really, really want to thank all of those who donated gifts or money for us to be able to bring some cheer to others this holiday season. In addition to the gifts you saw in the pictures, we were able to contribute money to care packages for families in the PICU (Pediatric Intensive Care Unit) and other families of patients. The girls thoroughly enjoyed picking out, wrapping, and sorting the gifts and were even more excited to be giving them to others. I pray that each of you will be blessed for your kindness and generosity.

Layla's Day

2012-01-12T18:57:00.003-07:00

Layla had an appointment on Tuesday with an ophthalmologist at Primary Children's. She was born with clogged tear ducts and they just wouldn't open on their own. When she was 16 months old she finally had surgery to probe them. The right eye has been fine ever since but the left side closed right back up. Well...our lives got a little crazy soon after that and Layla's eye got put on the back burner. Sad, but true. When I got around to calling an eye Dr, they were all scheduling a few months out. But January 10th finally came and Layla had her very own trip to the hospital. She was so excited to be going to "sissy's hospital"! It actually turned out that Annabelle needed platelets and so she and Josh ended up coming along and we made it a family trip to PCMC. Fun, huh!?! But Layla was still excited about it being "her" trip.

All went well with Layla's appointment and she is scheduled for surgery at the end of February. This time around they will put a silicone tube in her tear duct to keep it open, and then remove it 2 months later. If that doesn't work, there is a 3rd surgery they can do where they bypass the tear duct completely and make an entire new hole for the tears to drain through. But hopefully we don't have to get to that point. This is a really minor thing compared to other medical issues we deal with on a daily basis, but it will be nice to have it out of the way and be done with goopy eyes.

Annabelle didn't make counts to start chemo earlier this week so we are delayed until next Wednesday. All of her scans have been moved to that day, so until then we will enjoy some time at home. Her counts have finally recovered so she should feel pretty good and be able to have some fun. She is back to hauling a spit bucket everywhere but I'm hopeful that she will feel well enough to swallow again soon. She threw up her feeding tube yesterday morning while I was in the shower. She was about due to have a new one placed anyway, (they only leave them in for 1 month before swapping out tubes) so I got the joy of placing a new one at home while Josh and Bev held her down. The good part was that she really wanted one back in so that I could put her medicine through it and she wouldn't have to swallow it! It was still pure torture, but a little more bearable than the usual.

The Truth

2012-01-06T15:40:00.000-07:00

I am writing this post so that I can get it out of my system. I am feeling quite cheery and grateful, so don't let this make you think any different or worry about me, I really am fine, I just want to share my feelings. So here it is...the truth about my life as the mother of a cancer fighting cutie:

I am in a good place as far as accepting what trials have been given to my family. Being thrown into a situation you swear you never would have chosen for yourself forces you to really think about things and learn to accept whatever plan Heavenly Father has for you and your family. I have been so flattered by all of the people saying how happy and optimistic I am. Some days it cracks me up! I guess I somehow manage to sound cheery despite the horror of the reality. I know that my peace of mind comes from my deep belief in eternal families and knowing that we can be together forever, so I'm pleased that many have been able to feel that through my writing, but today I am going to share some of my other inner feelings (fears).

I hate Ewing's Sarcoma. HATE it. It has taken up so much of my sweet daughter's life. It took away her beautiful hair. It has made her grow up too fast. Never should a 5 year old half to know the stuff that she knows. She shouldn't have to be so sick, so medicated, so tortured by the awful poison called chemotherapy to even have a chance at surviving. I hate that she has to come so close to dying, just to be drug back to life again, and then have it repeated every few weeks. When some parents are at home and annoyed with their kids and just wish they would leave them alone, I'm in the hospital pleading that Annabelle will feel well enough to wake up and need me. There have been times where I have even considered pulling her from treatment. One time she was so sick and I wasn't sure she was ever going to get better. For days she hardly woke up and when she did it wasn't pretty. I imagined I'd be pushing harder than ever to beat this awful disease but I actually found myself crying on the phone with Josh and telling him to consider allowing her to stop treatments. I hate to think of having my girl taken from the Earth at such a young age, but I hated even more being there every minute of every day and watching her suffer the way that she was. I just wanted to keep her comfortable and let her go peacefully if that was God's will. Of course she recovered from that and it seemed silly I had ever thought those things. Then a month later I found myself in the same position thinking the same things and scouring the internet researching alternative treatments and studies. It's a vicious cycle.

I understand that everybody's hard is hard. And by that I mean that when your child isn't feeling well, it's still hard. It doesn't become easy just because you know somebody who has a child with cancer. Your financial struggles are still difficult. Your family situations are still tough. Your health problems are still miserable. Everyone's trials are still hard. But I have to say, having a child with cancer is pretty close to the top of the hard list. I don't mean to brag (haha) but it's pretty much the worst. I'm dealing with the worst thing I think a person should ever have to. Falling absolutely in love with a sweet child and then watching them suffer the way that these cancer fighting kiddos have to is beyond heart breaking.

Sometimes when Layla is sad, she'll choose someone else over me. She is growing and changing so much and I only see half of it. It breaks my heart. When I see her I just want to snuggle her and hold her the entire time, but most of the time Annabelle's needs take priority. I don't even live with my own husband. 90% of the time we are over 400 miles apart. He's home in Montana working and I'm living with his family in Utah. The Yates family is SO good to us, but I miss Josh. I miss having my own space and running my own home. And yet at the same time, I don't know how we're going to go back to it. Our tiny 2 bedroom rental house is going to be an even bigger challenge simply because of the massive amount of medical supplies Annabelle requires. So what do you do? We'd love to build a house and stay around Drummond. But.....what if Annabelle's cancer comes back? What if she isn't "cancer free" after she finishes this protocol? We have private insurance and it's only good if we live in Montana. They won't cover us if we move out of state. So if Annabelle needed more treatment here, we couldn't just decide to move our family down. It's not an option. So really, staying in MT is our only option, but how do you do it? I am already very nervous about sending Annabelle to school next year. The only thing that is making it even close to bearable is the fact that Drummond is a super small school, my cousin's wife is the Kindergarten teacher and I know that the school would be very understanding and accommodating of Annabelle's needs. But still, it scares me. So, stay in Drummond it is, which is what we want to do anyway, but it's difficult. It's not like you just search the listings for a 3 bedroom rental and then take your pick! But how do you commit to a larger mortgage payment when you have the fear that Annabelle's cancer could come back at any moment requiring treatment far away from home? I just can't stomach the thought of having to be away from Josh so much again because he would need to be home working so we could make our higher house payment. Of course this is all hypothetical. We hope that Annabelle is cured and her cancer never comes back. But we also know the statistics and have to be prepared for what may happen. So that's my stress over housing. Since Extreme Makeover Home Edition is off the air, anyone else want to build me a house? Just kidding...kind of. :)

I really just want to be back home where I am able to give back to the community that has given so much love and support to my family. I want life to continue on, and for my girls to have experiences like I've had growing up in Drummond. I'd love for them to work on a ranch during the summers like I did, and learn what it's like to work hard and come home filthy with grease in your hair. I want them to be able to spend time in the outdoors and not sitting in traffic. I want them to be able to walk outside and take in a breath of fresh air, not nasty polluted inversion air. I want them to experience being part of a community where everybody knows everybody and you run into your friend and neighbors at the post office or the store with mud or manure on your shoes. I want them to be surrounded by good people of all faiths and walks of life that truly care about each other. I want them to grow up around Drummond. I want to go home.

I make friends with other cancer moms and it is wonderful to have people who truly understand my situation. At the same time it is so heart wrenching to see their kids suffer too, and many ultimately pass away. Some days it is so frustrating dealing with the outside "normal" world because they don't understand how critical it is that Annabelle not be exposed to germs, or what it's like for me to get up multiple times every night to give medicines and feeds, or the extreme emotional toll it takes on a mother to not be able to take away the pain. And other days I almost wish I didn't know all these other cancer families because I feel their pain as well and it's overwhelming.

I hold my child down through scary/painful/harsh procedures and tell her I only do it because I love her. I voluntarily take Annabelle to the hospital for chemo treatments that I know will have harsh side effects and pray that this isn't the round that kills her before it cures her. And you think I'm strong? Another mom put it this way..."I am not strong - I am numb, if you say I am strong, it feels like you don't see me!"

Just a few little bits of my reality to share. Ahhhh, I feel better already.

Fever...again

2012-01-05T20:04:00.002-07:00

Annabelle is back in the hospital with a fever. She had an outpatient clinic visit for a push of Vincristine on Tuesday and we had only been home about 2 hours when we had to get in the car and head back to SLC. Days like that exhaust me and make me frustrated! Josh went to the hospital on Tuesday and relieved me so I could come back to Tremonton and rest for a few days. I came down with a horrible sore throat last week, and I've been on antibiotics for it (even though it came back negative for strep), but I've still been feeling pretty tired.

It was SUPER hard for me to leave Annabelle with anyone else, even Josh, when she is so sick but I need to get some extra rest so I get over this completely so I can be 100% for Annabelle when she needs me most. The last time she bottomed out after having Doxorubicin was pretty scary, so for me to leave her was a big deal! I am planning to go back some time this weekend and switch off again. It stresses me out not being there every moment to see how she is doing, but this is the best thing I can do for her right now.

When she recovers and is ready to start her next round of chemo, they will be doing scans again. I didn't think they did them again until she was finished with the protocol, so I was surprised to hear about that. I am excited to see where she's at, but very anxious/nervous at the same time. Please include Annabelle's scans in your prayers and that they will find no cancer. Thank you!!!

Welcome 2012

2012-01-02T14:02:00.003-07:00

I am happy to say goodbye to 2011 and a friendly welcome to 2012! I pray this new year will bring good health and much happiness to my family and all of yours.

My mother-in-law, Bev, had this great idea to take a paper lantern and write down things we wanted to get rid of this year and then let it fly away, never to be seen again. I loved it, and it will now be a family tradition! The first thing to go on the lantern, of course, was cancer and Annabelle wrote it herself. :)

Layla with Grandma Bev.

Annabelle with Grandpa Kim, lighting the lantern.
Josh and Ricky were the official launchers.
Let it fly!
Goodbye bad things of 2011.

Utah Moms with Cancer Fighting Cuties

2012-01-01T18:33:00.003-07:00

We have a special group of cancer moms here in Utah. We have a private facebook group where we can ask questions, vent, share stories and whatever else we need to do with other moms who "get it". They also get together for dinner once a month (I haven't been able to make one yet) and have play dates. It's a group you never wanted to be a part of, but you're glad you have. These women are absolutely amazing and you feel so comfortable with them because you don't have to explain things or what your most recent lab results mean. They truly "get it" and I'm so thankful for them welcoming to the group as a temporary Utah resident!

There is also a blog where we share information and highlight our cancer cuties and their battles. Annabelle was featured this last week so I thought I'd share the link so you can read through her diagnosis story if you'd like. Or for anyone that is new to this blog, it's a good place to catch up on where we're at with Annabelle's treatment.

Utah Moms with Cancer Fighting Cuties: Meet Annabelle

A Christmas Miracle

2011-12-24T21:26:00.002-07:00

It's Christmas Eve, the girls are in bed and we're all together, not in the hospital! I really thought Annabelle would be in with a fever right now but for the first time since starting treatment 8 months ago, Annabelle's ANC has already recovered and she didn't get a fever. FIRST TIME! It's a Christmas miracle.

A special thanks to the "Secret Santa and his Elves" who went out of their way to surprise us tonight. Such a thoughtful gift and the girls absolutely adore the cradle. Two baby dolls are tucked away in it for the night right now. Whoever you are, I hope you're reading this so that I can thank you. You have exemplified the true spirit of Christmas in your Christlike selflessness. May you and your family be blessed!

And to our other secret admirers who have been leaving pieces of the nativity set each day, you have brought smiles to our faces and I am so grateful for good people like you in the world. The girls' eyes light up every time they open the door and unwrap a piece. Such a special memory that we will treasure always.

I pray that each of you who read our blog will be blessed with the spirit of Christ this season, and always. I thank you for your thoughts, your kind words, your prayers, your generosity and your love and concern for Annabelle and our family during this trying time. My heart is full.

The Marathon

2011-12-21T11:29:00.003-07:00

I have some pictures that I want to share, but I don't have my camera with me and I haven't uploaded them yet, so that will have to wait. We are slowly but surely moving along. This last round of chemo was only Vincristine and Cytoxan, NO doxorubicin. Merry Christmas to us! Doxo is some nasty stuff so I'm glad she didn't have to get it this round. So far Annabelle has felt good, although she is just bottoming out now. We are sitting in clinic getting a blood transfusion and her temperature is .1 degree away from having to be admitted for fever and neutropenia. It's weird how cancer changes your perspective. I'd rather get admitted right now and hopefully get over the fever before Christmas than drive back to Tremonton and get a fever tonight and have to come back! So we'll just wait and see...

A few months ago I read somewhere that cancer is a marathon, not a sprint. I have been thinking about that a lot lately. As a cancer mom, you have to pace yourself and rejuvenate along the way or you'll crash before the end. You can't take off running like a sprint and expect to keep up that pace. Your body can't handle it physically, emotionally or mentally. Last week I felt like I had my first real breakdown since the initial shock of diagnosis. I have been surprised by myself and how well I have been holding up. I would have imagined myself huddled in the corner in the fetal position, crying for days on end, but that hasn't been the case. Of course that isn't really an option, but I haven't felt like doing that either. I've felt strengthened by many prayers on our behalf and sometimes I've been pretty proud of myself and thinking I was doing a pretty decent job of being a cancer mom. While that is still up for debate, I know one thing for certain, I haven't been taking care of myself like I should be. I guess it just caught up with me. Plus flu season has me worried and in super sanitation mode so that Annabelle doesn't end up in the picu like some of our other cancer cutie friends! And Josh's grandpa passed away. So I'm sure it's a combination of a lot of things, but my body had had enough. I was having horrible headaches, super stressed and I just wanted to stay in bed all day and cry. Josh picked up on it all and knew it wasn't like me to be feeling so miserable so he insisted I go to the Dr, and sure enough, my blood sugar was low. It was a wake-up call for me that I need to pay at least a little bit of attention to myself so that I can be the best I can for my family.

So here I am in the middle of this marathon I never wanted to do in the first place. But there's no choice of turning back now and Annabelle needs me. Layla needs me. Josh might not need me, but he would like me to be able to go home so we can live together again some day. :) So I will endure. I WILL endure.

My Home

2011-12-12T14:25:00.003-07:00

I love Granite County. It's where I was raised. It's where I want to raise my girls. It is my home. This aired on the TODAY show today and you must watch it. A story about a small town and a county filled with such good people.

http://video.today.msnbc.msn.com/today/45639265#45639265

In the last few seconds they mention how the people there not only gave to the Cutler family, but they are helping others in need too. And guess what? That's my family! Although I know of the Cutler family, I am yet to actually meet them in person, but when they heard that another child in the county had been diagnosed with cancer, they found a way to get in contact with us. They chose to donate this years proceeds of their annual Head, Heel and Hope fundraiser to Annabelle's relief fund and we are SO grateful!

I hope you'll share this video with others and allow them to experience a feel-good story about the wonderful place I call home!

The Waiting Game

2011-12-07T21:13:00.004-07:00

If there's one thing I've learned about the life of a cancer mom, it's that you can't plan on anything. Nothing. Not a thing. Annabelle didn't make counts on Sunday to be able to start chemo on Monday, which was 3 weeks from the start of her last chemo cycle. She had labs drawn again today and her platelets are STILL too low. Grrrrrr! It was nice to have a few extra days off, but we need to get on with things. She's set up to have labs drawn again this coming Sunday with plans to start chemo on Monday. I'm not thrilled about this for 2 reasons. Well, really more like 17 reasons, but 2 BIG reasons!

1) The longer between cycles, the longer it will be until she finishes treatment and we can go home. If each cycle takes 1 month (which would be shorter than the last 3 have averaged!) then we'll barely make it back in time for school to start in the fall.

2) If she starts on Monday the 12th, she'll have an outpatient treatment on Monday the 19th and then her counts will bottom out later that week and she'll likely have her normal fever/neutropenia admit just in time for her to be in the hospital for Christmas. 4th of July, Halloween, Thanksgiving...she deserves to spend Christmas at home, well her Utah home anyway!

Now for some good news...Josh and I were able to sneak away for a couple of nights to a cabin, just the two of us. It was my Christmas present to Josh, but I think I enjoyed it as much as he did! It was a much needed break and I am so grateful we were able to escape.

Family

2011-12-03T13:17:00.004-07:00

We are enjoying our last few days out of the hospital before Annabelle goes back for her next round of chemo. I'm a little nervous because she will be getting VDC again (Vincristine, Doxorubicin and Cytoxan) and that's the series that is SO hard on her. The last time she had it was the day she started radiation, and if you recall, when her counts bottomed out the next week it was pretty rough. Remember the 106 degree temperature that wouldn't drop for days!?! Uggghh. I'm just praying that it won't be as bad this time with them scaling back by 25% on the dose! Right now Annabelle is able to swallow, but she won't. She will drink anything and eat soft things like applesauce and yogurt, and then immediately turn and spit her saliva. I'm not gonna lie, it's about to drive me insane! I know it's not a long trip, but still! I'm hoping some help from a speech/language pathologist will get her over it. Spit buckets everywhere, spit baggies for when we are out and about, spit in the bed, toys falling in the spit, dress-up dresses in the spit, Layla adding her spit to the spit, spitting at the dinner table...you get the picture!

Anyway, like I said, we are enjoying our few days out. Josh is here so we are a complete family again! A lot of time has been spent doing puzzles and we're going to make a gingerbread house today. I've had time to do some crafting (my therapy!) and Josh and I even snuck in some Christmas shopping. I can't wait to take the girls to pick out gifts for other children and families and get them delivered too!!! A huge thanks to everyone who has donated to the cause!

Thanksgiving in ICS

2011-11-26T14:15:00.001-07:00

It has been a tad stressful the last few days! Annabelle's throat had been hurting really badly and Oxycodone was barely cutting it. By Thanksgiving eve she wasn't able to swallow her meds anymore. I tried pushing them through her NG tube but as soon as anything hit her stomach, she immediately vomited it up. She was so miserable she asked me if she could just go to the hospital to get some medicine through her line, so we took off for the hospital around 9 pm. When we checked into the ER she had a fever. Since she had labs drawn earlier that day I knew her ANC was zero so that automatically bought us a room in ICS. They gave her 2 fluid boluses in the ER and when we got up to ICS around 1 am her blood pressure had dropped. The resident ordered another fluid bolus but this time they drew up big 50ml syringes and pushed it through her line by hand as fast as they could. (Normally they just 999 the pump and have it push the fluid as quickly as it can.) This whole time Annabelle was pretty out of it. After the 3rd bolus they felt OK with where she was at and let her sleep. Of course she woke screaming and needing morphine a couple of times so I had gotten about 3 hours of sleep when things got really wild!

Around 6:30 am her heart rate monitor suddenly jumped to 231 beats/minute. The alarms started sounding and people came running in but it quickly went back down. They checked her blood pressure and it was quite low again so they started the 4th fluid bolus in 10 hours. She hadn't peed this entire time and her face was getting pretty swollen. They couldn't get her to really wake up and her pressure was still low so they called a rapid response code to her room. Within minutes her room was filled with doctors and nurses assessing the situation while the fellow gave out verbal updates. It all happened so quickly I didn't really know how to act! One of the resident docs that we love got the page and saw Annabelle's name and she was the first one to arrive. In the middle of all the commotion she looked over and whispered to me "are YOU ok?" I guess I didn't realize how serious the situation was. After things settled down she came over and gave me a hug, still in my pajamas with greasy hair and all! That's when it started to sink in a bit. Annabelle was not doing so hot. The PICU attending doctor gave his advice and after going back and forth they decided to leave her up here.

She eventually woke up and started looking alive again around 9:30. She watched some of the Thanksgiving Day Parade on TV and thought that was pretty great! However, in the afternoon she started dropping pressures again. They ordered yet another fluid bolus and another PICU consult. She recovered more quickly after that one and they decided to still keep her up in ICS. Right after that we found out that one of her blood cultures taken in the ER had come back positive. It takes a while for them to find what the actual bacteria is though, so they loaded her up with more antibiotics to wait it out. That night she only had to get 1 fluid bolus to keep her pressure up, so it seemed she was on the up and up! After getting a blood transfusion yesterday she hasn't required any extra fluid! We found out the results of her positive culture this morning. She had Staphylococcus Coagulase Negative in her blood. It is a bacteria that is commonly on your skin and most of the time when it comes back positive they question whether the blood sample was tainted and whether it is actually IN the blood. Because of everything else that was going on with her little body, Dr Spraker said she believes it really was in Annabelle's blood stream. Super.

Now that we have a reason for everything that was going on, she is down to 3 antibiotics and her pressure is stable. When she is able to take meds orally or through her NG tube we should be able to get out of here. Her throat still hurts and she is back to not even swallowing her own saliva, but hopefully her counts will come up in the next couple days and she'll feel a lot better! Until then, we'll be hanging out here.

It's Back

2011-11-18T18:37:00.002-07:00

Much to Annabelle's dismay, she is now sporting a feeding tube again. She needs to make up for not eating for several weeks so hopefully this will help her put some weight on. She has also been putting up quite the fight about taking her oral meds. It is mentally, emotionally and physically exhausting trying to get her to take them so I am looking forward to being able to push them through her tube instead!

Giving Back

2011-11-17T15:46:00.003-07:00

I figured that posting here would be the easiest way to get the word out to friends and family about Christmas, so here it goes. We have been so blessed and the girls have gotten SO many cards, gifts and packages in the last 7 months. I say a very sincere THANK YOU to every single person who has sent things! It has been truly overwhelming to feel the support from our little community and those far away as well.

With that said, I am asking that people please don't send gifts to the girls for Christmas, but rather send items (toys, hats, scarves, games, etc...) that we can donate/give to other people more in need than us. (Or send money you would have spent and we will purchase those things.) Annabelle is very excited about delivering gifts to other kids and this will be a great chance for us to "pay it forward".

May your homes be filled with the Spirit of CHRISTmas and your families be blessed with good health!

Love,

The Yates Family

Chemo News

2011-11-16T10:22:00.002-07:00

Annabelle FINALLY made counts on Sunday so she started chemo again on Monday. Before heading to ICS we made a stop at The Huntsman for a follow-up radiation appointment. Annabelle was so excited to go back and see her friends there! Dr Poppe was very pleased with how her neck looks and she was thrilled to show off her fresh, new skin. He is glad that she is able to swallow now but agrees there is still some acute swelling in her throat that needs to resolve. She will go back in another 4-6 weeks when that should be gone and if she is still struggling with some swallowing they will do a procedure where they put a balloon down her throat (she would be sedated) and inflate it to stretch it back out. I am hopeful that it will get better on it's own, but it's good to know there are options if it doesn't. After we finished up there we came down to Primary's and got settled in ICS.

As weird as it may sound, I am glad to have her back on chemo. Ideally her cycles are supposed to be 2 weeks apart, although she's never made counts at the 2 week mark. Throughout her course of treatment they have been getting further and further apart and this last time it took her 6, yes SIX, weeks for counts to recover. Delays in treatment are expected but not to this extreme. For that reason they have decided to reduce her chemo dose by 25%. So for now she will get 75% of her normal dose with the hope that she will able to recover more quickly and keep on schedule. If she does great for a couple rounds they may take her back up to 100%, but they told me they honestly don't expect that will be the case with her. Some protocols call for extra rounds at the end to make up for the dose reduction but luckily Annabelle's does not! I ran into Dr Sato in the hall yesterday and she explained that they can only give her body as much as it can handle and it obviously couldn't take the higher dose. I finally said to her, "So it doesn't do any good to give her the higher dose if it's going to kill her!" She laughed and hugged me and said, "Exactly. You understand what I'm saying." We love Dr Sato.

Annabelle is getting her IE treatment, which is 5 days of Ifofsamide and Etoposide. We should get out of here on Saturday, and hopefully in time for me to watch the Cat-Griz game. GO GRIZ! Although, let's be honest, they'll probably get whooped. Then, after the storm moves through this weekend, Josh will be coming down to stay for a while. Happy day! My little family will be all together for a few days. Annabelle will be bottomed out and have no immunity right around Thanksgiving, so it probably won't be that fun for her to be kept away from everyone, but maybe with the reduced dose this will be the first time she doesn't get a fever??? We can hope, right!?!

Disney on Ice

2011-11-14T17:01:00.005-07:00

Annabelle's counts took so long to recover that it worked out great for her to go to Disney on Ice! I had gotten tickets a couple months ago, obviously not knowing where Annabelle would be at in her treatment, but praying she'd be able to go. She was SO excited about the entire day's events and she wasn't disappointed. Layla went too and she also loved it. It was so much fun to do something "normal" like that with my girls! And it was extra fun that we got to go with friends. The girls enjoyed seeing their friends and I know I loved hanging out with Jessica, Judy and Brittany. It was an evening full of fun and laughter!

The crew (minus me taking the picture and Layla whom I was carrying).

Layla, Annabelle and Kailey. Three cute girls in pink!

Tinkerbell was a favorite of both my girls!

Annabelle refused to take a picture with me, but Layla can still be restrained. :)
The little mermaid scene was very cool!

Annabelle's face when Rapunzel came out....priceless.

All the princesses coming out.

Annabelle showing me how much she loved it by doing a cheer!

Eating dinner at Texas Roadhouse. At least Kailey would smile for me!

Layla with a greasy face from all the rolls and cinnamon butter she ate!

Annabelle and Judy.

Healing

2011-11-06T18:03:00.002-07:00

Annabelle was discharged from the hospital this last Tuesday, the 1st of November. What a glorious day! She had been in for 18 days, her longest stay yet. I know a lot of other cancer treatments require kids to be in for much longer than that, but thankfully that isn't the norm for Ewing's Sarcoma. Her poor body has been through so much just trying to recover from the effects of radiation. But the way I figure, it had to have killed any cancer cells left in the area, because it seemed to kill everything else living around there! It was heartbreaking to see her neck burned so badly and her unable to swallow for weeks, so I am glad that is over with. She is now completely off pain meds and just started eating real food the last few days. Up until then she had only been drinking and eating popsicles. She is still on TPN but I am hopeful that she won't need that too much longer or that we can at least switch to an NG tube. I know she won't be thrilled about that but it is better for her than being on TPN for long periods of time. Yesterday when I took the dressing off her neck to clean it, the last scab fell off! She now has new, fresh pink skin and doesn't have to keep it wrapped up.

For now we are enjoying being back with Layla. Even the occasional cat fight they get into feels so good to me. It is great to be with BOTH my girls again. If only Josh were here too...I miss him. Layla is more hilarious and adorable every day. She is so easy going and such a delight! I am very blessed.

Annabelle is scheduled to start chemo again this coming Tuesday. She had labs drawn on Thursday and her platelets were still only at 32 and they need to be at 75 to start chemo, so we'll see what her counts are tomorrow and whether or not she'll actually start on Tuesday. Part of me wants them to still be too low so that we can enjoy more time here and possibly make it to Disney on Ice, which I purchased tickets to several weeks ago. And another part of me is worried that it has been 5 weeks since she started her last cycle of chemo and they are supposed to be 2 weeks apart. Radiation really took its toll on her body and I hope and pray that it won't take so long for her counts to recover between each of the rest of her 9 cycles. The more condensed the treatment is, the higher the cure rate. Not to mention, the sooner she finishes treatment, the sooner we can be together as a family again and move forward with a new chapter in our lives!

Halloween: PCMC Style

2011-10-31T22:00:00.006-06:00

It would appear that Halloween has some bad luck for us. This is the second year in a row that I have been in the hospital with one of the girls on Halloween. Last year it was Layla. Here she was back home on Halloween night.

And here she was, just a few days before, in the hospital with periorbital cellulitis and adenovirus.
Those pictures still break my heart! She was one sick kiddo. This year I spent it at Primary's with Annabelle, but luckily she was feeling pretty good today. In fact, I quite enjoyed doing Halloween this way. No snowsuits needed (that's a Montana joke), no driving between stops, lots of fun activities and no clean up required by me, and Annabelle didn't eat a single piece of candy! What's not to love!?!

Annabelle was an adorable Tinkerbell. She even color coordinated her coban holding her dressing around her neck to match her outfit!
Annabelle has a bag here full of dress-up stuff so I pulled a few things out for trick-or-treating on the ICS unit. That crown was so tight and digging into my head it gave me a headache. And you can thank the photographer (Mike) for cutting off my bottom half which was sporting a too small tutu. I'm just so glad I didn't rip the thing, Annabelle would not have been happy!

Everyone here was encouraged to dress up. It was fun to see what some of the nurses and staff did. I loved the whoopie cushion costume...cracked me up!

Presenting Irish as......Dorothy (Toto included).
They had a carnival downstairs with lots of things to do. Bubbles...
Cookie decorating...
Dancing...
...and so much more that I didn't get pictures of. Just look at those eyes and see the smile behind that mask. She loved it!
Then there was lots more trick-or-treating. 4 floors of trick-or-treating to be exact! Hence the need to be pulled in a wagon.
After filling an entire bucket with candy and goodies, we came back to Annabelle's room. We found out that her neighbor (the patient next door) couldn't leave the unit because his counts were too low. Sad! Well, since Annabelle isn't eating anything anyway, she gave a bunch of her candy to him. He was so sweet and gave her a hug.
This picture cracks me up! She was being goofy and licking frosting off her finger.
Admiring her loot.
And last, but certainly not least, Layla as a doggy!
She is so obsessed with dogs, this was the perfect costume for her! See what I'm saying, that girl is irresistible! I absolutely adore her.

I'm Back

2011-10-30T14:47:00.003-06:00

Last week I started to feel like I was getting sick. It felt like a cough forming in my chest and I was super worried about being around Annabelle. As much as I hated to leave her, I knew I had to let someone else come for a few days. My wonderful mother-in-law (she seriously is amazing), Bev, came to stay with Annabelle and I went back to her house to try and take her spot. It was so good and SO fun to spend a few days with just Layla. She seriously cracks me up. She has changed a lot, and since I have only seen her for a few days in the last 2 months because of radiation, I could see big changes in her. Just as we were driving out of SLC she was surprising me. Every church we would drive by she would say, "Mommy, temple, Temple, TEMPLE!" I don't think I'd ever heard her say that word before. And when I'd turn my blinker on she'd click her tongue along with it. When did she learn to click her tongue??? My baby is growing up and I'm missing so much of it, so it was great to be with her! She talked my ear off and half of it I needed grandpa to translate for me! Sad, but true. We played together, cooked meals, baked and decorated cookies, went to a birthday party and did lots of snuggling! I may have spoiled her a bit and let her sleep in bed with me (sorry, Bev!), but I couldn't resist. She truly IS irresistible.

I knew Annabelle was in good hands, but I was still willing to do anything to try and fight off whatever was coming on so I could get back to her. I was rubbing oils on my chest, swallowing whole spoonfuls of minced garlic and taking handfuls of vitamins and herbs! (I probably would have done just about anything you told me might help so I could get back to Annabelle.) But it did work, and I am feeling much better.

Today as I was changing Layla's diaper she was saying, "Monkey, ooo ooo, ahh ahh", so we started going through the animals and what they say. I asked her what Layla says but I can't remember her response. Then I asked her what mommy says and she replied "Love you, bye. Sissy hopsital." Broke my heart! Apparently that's what she hears me say a lot. "I love you, bye. Gotta take sissy to the hospital!" Well, at least she knows I love her! Thank goodness radiation is over and soon we will be able to spend more time back at grandma and grandpa's with Layla Jane!

3 days post radiation

2011-10-24T21:05:00.001-06:00

Just in case...

2011-10-22T21:57:00.002-06:00

Just in case you thought I was joking...

(sorry about the bad lighting)

I wasn't. However, I am happy to report that my sweet girl is back. Quite possibly the whiniest/funniest/craziest/meanest 4 days of Annabelle's life!

But, as I said, my sweet girl is back. She handed me this today and told me it was a cake for me. Ummmm, thanks!

Just in case you weren't sure, that's a bucket of spit. I was quite pleased to see the chunks, though. We do a bit of a celebration when she finally breaks one loose and coughs it up! She has been telling me that she wants to do something special for me. She even made me not be in the picture as she talked with Josh about it on Skype. (As if me not being in the camera view meant I couldn't hear her!) She told him all about how when she gets out of the hospital, she needs him and grandma to help her make something for me, but I can't be there because it's a surprise. Oh, I love that kid. Let's pray it's not another bucket of spit though!

She is now beginning the healing process following radiation. What could possibly make you feel any better than pink princess goodies straight from Disney World!?! Thank you to my friend Shannon, you're the best! (And isn't she just the cutest?) I love you!
And now for an update on Annabelle's burn. I'll let the pictures speak for themselves.

Not fun!

Radiation Graduation

2011-10-21T11:17:00.004-06:00

Today was Annabelle's last day of radiation! I am so relieved to have it finished so her body can now start to heal from all of the effects. I am SO PROUD of her and how well she has handled everything. The doctors were just in and saying how brave and tough she is. They know she can handle a lot of pain, but she shouldn't have to be uncomfortable, so they upped her morphine again. Sorry, that was a random side note, but I am one proud mama and I hope to someday be as tough as her.

She likes to wear fun things to radiation to show off to all of her friends there. The last 2 days she was her favorite princess, (because of the PINK dress) Sleeping Beauty. She also insisted we call her Aurora. It wasn't just for fun and being silly, she was serious! I blame that on the roid rage.

Today she wore her Halloween costume so everyone could see it. Introducing....Tinkerbell!

Just a little spit hanging from the mouth.

Walking in to radiation, wings and all!
The therapists faces as they saw her highness arrive. They all dressed up for her last day too. She loves these girls! And they love her.

They even decorated the room extra fun for her last day and spoiled her with presents!

Rubbing her itchy face before falling asleep.
It was a bittersweet moment for us as we left Huntsman today. Sweet because she is one step further along with her treatment, but bitter because she loves going there so much. I asked her this morning if she was excited that it was her last day of radiation and she started crying and said she was sad because she is going to miss her friends there! She never made the connection that the radiation was the cause of her pain and inability to swallow. She is already excited to go back in a few weeks for a follow-up appointment.

I love you Annabelle Rae! You were so brave while they zapped the cancer, now we're one step closer to killing it, forever!

Breathing

2011-10-20T09:55:00.003-06:00

The proper title to this post would probably be "Not Breathing" but that might freak people out when they saw that. But I figured it easiest to post here instead of trying to answer calls from everyone.

Yesterday Annabelle had the same issue during her sedation where she stopped breathing for a little bit. Not that big of a deal, the anesthesiologist was expecting it. Today, however, was a different story. This time when that happened they weren't able to breathe for her because her airway was blocked off. All the swelling combined with her not swallowing her saliva was causing problems. An oral airway wasn't doing the trick so they had to insert an LMA, or laryngeal mask airway. It goes back behind the tongue and inflates to keep the airway open.

As they were bringing her down the hall I heard them saying "Breathe Annabelle, come on, take a nice deep breath!" She was so sleepy and there was so much mucus that she couldn't keep her oxygen up. I would irritate her and try to get her to wake up and breathe but she would slump over and the alarms on the monitor would sound. She ended up having to take an oxygen bottle for the ride back to PCMC and she still would go long periods without taking a breath. Thank goodness we have a good nurse today!

She is back in her room now sleeping away. Her oxygen is fine and her heart rate is alright, we're just used to seeing her heart beating twice or even nearly three times as fast as it is now. Her blood pressure is on the low side, but still considered fine. She does respond if we try and wake her so we aren't' concerned she is too sedated, she is just awfully sleepy. Her respirations are about half of what they usually are per minute, but she is maintaining good oxygen levels so we'll let her be for now.

I'll update again after the doctors finish seeing her, but she really is fine for now.

Steroids

2011-10-19T16:50:00.004-06:00

Let me just say that anyone who has to have a child on steroids for long periods of time is my hero. Annabelle is taking Dexamethasone for 4 days to try and reduce the inflammation in her throat. 24 hours into the treatment my sweet girl turned into a beast. There is just no other way to explain it!

I'm sure it is helping, but her throat is basically sun burnt so she isn't going to be swallowing for a while anyway. However, there is hope that this treatment now is going to help prevent a stricture in her throat later, so I shouldn't complain. Apparently it is fairly common to have scar tissue build up from the inflammation and close things off 3-4 months after finishing radiation. We certainly don't want that to happen, so for the next few days I'll be taking frequent "bathroom breaks" (that's where I tell Annabelle I'm going when I need to get out of the room and take some deep breaths).

She is wearing her Sleeping Beauty princess dress today so I am preparing a sign for her door to put up while she is sleeping that reads...

Princess on Steroids

You Wake Her, You Take Her!

And I mean it!

Yuck

2011-10-18T12:58:00.000-06:00

Just when I thought I had things under control, everything went out of control. Annabelle got a fever on Friday night and we have been in the hospital since. Fever and neutropenia is nothing new. It happens every time Annabelle's counts bottom out. The worst of it came on Saturday morning. Annabelle took some oxycodone for pain and then they handed her Tylenol for her fever. As soon as that hit the back of her throat she screamed in pain and started throwing up blood. Since that moment, she hasn't swallowed anything. Not a single thing. Not even her own saliva. She spends the entire day and night spitting and gagging and spitting some more. We go through several boxes of kleenex every day and empty buckets constantly.

All of the pain and swallowing issues are from radiation. Her skin is badly burnt so I can only imagine what it feels like to have that kind of damage in your throat!

A few days ago.

Yesterday.

We have the wound team taking care of her burn now so hopefully we can atleast keep it from getting any worse!

This is how we spend most of our time...

Atleast she could muster up a smile for a picture with her daddy.

To control the pain she is now on a PCA. It gives her a continuous drip of morphine and she can push the button for break through pain relief. She still has bad moments, but the morphine also provides some comic relief. When she's good, she's REALLY good!

Yesterday she even played in her spit. She would try and make designs as she spit it out. Then she'd suck it up in a syringe and squirt it back out.

Like a mad scientist.
Today she has moved on to playing with the suction. As I am typing this, she is spitting in her hand and then suctioning it out of her hand and watching it go all the way through the tube and into the bucket. She started a steroid to bring down the inflammation in her throat so hopefully she will be able to swallow again soon (within a day or two maybe?) and we won't be swimming in spit anymore.

A few other random things.....

The steroid has already made her mean. She is up and down like a toilet seat. She goes from goofy morphine funny to demanding random things and yelling in 2 seconds. Thank goodness she will only have to take them for 4 days!

Right after they put her to sleep for radiation and I left the room, she stopped breathing. But the anesthesiologist assured me there was no need to worry, he was able to easily breathe for her. Seriously? Thanks sleepy doctor. I won't worry next time...NOT! But it wasn't too bad, they just had to bag her, no intubation. Very minor, ya know.

Family Update

2011-10-14T13:05:00.000-06:00

I realize that there are many "fans" who check our blog daily for any updates. I really hate to bore you or scare you or offend you or anything else, but I am going to try and update more often. If nothing else, for the grandmas and great grandmas to be kept in the loop! So here is a bit of an update on everyone...

Josh has been down here in Utah for the past few weeks. He has been redoing his parents' roof and adding on a new covered front entry. It is looking awesome and completely changed the look of their house, at least in my opinion. I will have to share pictures of the finished project. Annabelle and I have not been able to spend as much time with him as I would like because we are still staying down in SLC for radiation but we have been able to see him more than we get to when he is in MT!

Layla Jane is cuter than ever. I don't get to see her too much and I miss her terribly, but she is so sweet to talk to me on the phone and tell me everything going on in her 2 year old life. Usually grandma has to tell me what she is pointing at and narrate me through the conversation but I love it! She is talking like crazy and some days runs around goofy jabbering the entire time. Josh told me that she "helped" with the rock work the other day. She would pick up pieces and tell him where to put them and then measure them with a tape. Oh, I could go on and on about how sweet she is.

Annabelle had a big birthday on Monday the 10th. She is now 5 years old! I will share more about that when I have pictures to go along, but let me just say that the day was filled with lots of pink, princesses, fairies and smiles! She is still fighting hard. During radiation, her lows have been REALLY low, but that makes her highs seem even higher. When she feels good she takes advantage of it. She loves going to radiation because everyone is so good to her there. Today she took a tutu to Heather, one of the radiation techs, and Heather put it on and wore it for her. She loves those girls there and I think she will actually miss going. It will be one of those bitter sweet moments. She is set to finish radiation on next Friday, the 21st. Yay!

I am doing fine and feel like I am finally in a good place emotionally and mentally. (Physically is a whole other issue...let's just say cafeteria food, stress, and a whole lot of sittin' around is taking it's toll!) For a few weeks (ok, maybe months) I was in survival mode. Just trying to not loose my patience when Annabelle was mean and grouchy while functioning on minimal sleep was taking all I had. This last week I was able to catch up on sleep and relax and breathe during Annabelle's frequent naps and now I feel more like myself again. Fall is my favorite season and I hated being so run down during it and not able to really enjoy it. Annabelle and I took a drive yesterday up Emigration Canyon and over to Little Dell Reservoir. It was just what I needed.

The view from on top.

Down on the water.
The changing colors reminded me of our trip back east last year to see the foliage. It reminded me that life was "normal" once and it will return to that again someday. It will be a new normal, but we will make it work.

Great Day

2011-10-08T11:42:00.002-06:00

Yesterday was a great day. A day we won't forget. Josh's sister, Hayley, was married in the Salt Lake Temple. Annabelle and Hayley have always had a special bond. I believe it started when Hayley came to stay with us for a week one summer when Annabelle was almost 1 year old. Ever since then, Annabelle has absolutely adored Hayley. So you can imagine how upset Annabelle was when she found out she wouldn't be able to go to Hayley's wedding because she had to be inpatient for chemo. When I first told her she was so sad, but she is so amazing she quickly became alright with it.

The day started off by getting to have Layla come spend a few hours with us while everyone was at the temple. Grandma and Grandpa, Ashley and Derek, and Hayley and Ricky also surprised us by coming by before the wedding. Ashley took pictures of Annabelle with the bride and groom and I can't wait to see them! Annabelle loved it and felt so special.

Here is Annabelle in her dress she got for the wedding. She just couldn't bring herself to smile though!

Layla and Annabelle playing together at the hospital.
It was great to have my Layla babe for a while. I miss her so much! After the wedding, Josh picked Layla up and took her to the dinner and then back to Tremonton. Later that night, after all the partying was finished up, Hayley and Ricky came back by the hospital. They brought us cupcakes from the dinner and pennies for Annabelle to make wishes with. We met them out front and headed over to the wishing pond.

The newlyweds making a wish.
Asking Annabelle what her wish was. I love Annabelle's face in this one!
The happy couple and a happy little girl!
Thank you Hayley and Ricky for making Annabelle feel special and not left out of your big day. I love you guys and can't thank you enough for being so good to Annabelle!

Radiation Pictures

2011-10-05T14:26:00.004-06:00

Getting to leave the room to go to radiation. Such big excitement! (Do you love the skeleton pajamas? Annabelle calls them her bone jammies!)

A little fresh air outside waiting for our ride.
Up at Huntsman Cancer Institute, looking into the vault and the "fairy alley" they created for Annabelle.
Walking in with Heather.
Annabelle fairy. She loves to see it every day!
This was a special day. Heather was putting up Dr Poppe, our radiation oncologist, in fairy land!
Heather and Amy are so good to us. Annabelle loves to see what is new in the princess/fairy room every day.
Once you are inside the vault there is an ocean too.
The girls have a new fish each day for Annabelle to add.

Annabelle raising the bed up. They are always so good to distract her while the anesthesiologist gets his stuff together.

Luckily, the day we took our camera to radiation, we got to meet a special friend. I'll call her M. She is absolutely beautiful, isn't she!?!
M is also from Montana and she also has Ewing's. I couldn't believe it when my dad told me that he heard on the radio about a girl with Ewing's who lived only 70 miles from us. We got to connect with her in SLC on her very last day of radiation. Congrats M on fighting so hard! It made my heart so happy to see her, a survivor.

More of the worst week so far...

2011-09-29T17:54:00.000-06:00

When I posted on Saturday I was optomistic that Annabelle would get better quickly. Sunday proved different. She continued to get worse and worse and that night her fever topped out at nearly 106 degrees! She had to be put on oxygen and by that point she was on 3 antibiotics and also an antifungal. Nothing was helping and she was getting worse.

On Monday the anesthesiologist refused to sedate her for radiation. She was so sick he didn't feel comfortable putting her out. I was SO exhausted that the next few days sort of ran together. At some point she also tested positive for rotavirus. So C-diff, rhinovirus and rotavirus combined with neutropenia was pretty well shutting her down. The doctors were re-evaluating her overall treatment plan so there may be some changes coming in the future. The treatment for Ewing's used to call for 3 week cycles of chemo. Now they try to condense it to 2 week cycles because research has shown that that increases the cure rate. But Dr Afify told me one day that it doesn't do any good to try and achieve that number if it kills her in the meantime. You'd have to know Dr Afify to appreciate her saying that. She doesn't sugarcoat it...at all!

Once Annabelle's ANC started to recover she started feeling better. She ended up with another platelet transfusion and blood too to help out. I am happy to say she is MUCH better now. She still has symptoms from the C-diff and rotavirus, which means insane amounts of poop. Not fun. And she is losing her voice from the radiation. She speaks in a whisper to keep it from hurting so it is very difficult to understand her at times. The many hours she spent watching Signing Time are paying off though, and next time we are inpatient we will make her a communication board with pictures she can use to tell us what she wants/needs.

She was discharged today and so happy to get out for a few days! We are staying in SLC for radiation in the morning and then we are off to Tremonton for the weekend. We both can't wait to spend it with Josh and Layla. It's going to be great!

I never thought...

2011-09-27T11:25:00.003-06:00

Cancer has changed my life in many ways. I have now experienced things I never would have guess I would! Things like giving your own kid shots. Holding down your 4 year old as she screams during a dressing change. Sleeping in a chair bed for weeks at a time. Kissing my 2 year old goodbye and telling her I'll see her soon, but not actually knowing when it will be. Going a month without seeing my husband. And many more...

Today I add to the list: Signing closing documents at the hospital. That's right folks, Josh and I signed today and if all goes well tomorrow we will be through with the nightmare of selling our house in Colorado. It has been a burden, to say the least, for the past 2 years but the last 5 months it has been insignificant compared to other stressors in our life. But let me just say that finally getting rid of it gives me a little push of momentum to keep going through this tough week, and the next several months. I feel like doing a happy dance to celebrate but I don't want to jinx myself. When I get word tomorrow that it is a done deal, I'll probably cry and then offer a prayer of thanks. Goodbye house in CO. I was good to you, and you were good to me while I lived there. I hope your new owners enjoy you as much as I did. Oh, who am I kidding? At this point, I'm just glad to move on!

I hate fevers!

2011-09-24T20:13:00.003-06:00

Poor little Annabelle is miserable. My sister few into SLC on Wednesday to visit us. I had imagined trips to the park, zoo, watching chick flicks and relaxing. That didn't happen. Annabelle went to radiation Thursday morning and when she came out of the sedation her heart was beating so fast. She was so uncomfortable and when they checked her temp, sure enough, she had a fever! We sent straight from there over to the clinic at Primary's. By then her heart rate was 186, her temp was even higher and she needed a platelet transfusion too. She was admitted to ICS and we have been here ever since.

She is getting Tylenol every 4 hours and her fever still hasn't broke. They normally don't give ibuprofen to kids in ICS because it can mess with their platelets. Annabelle's fever was so bad once before that they broke the "rules" and gave her 2 doses and then it finally brought it down. They couldn't do that for Annabelle this time because her platelets are too low to be messing with them. She is also positive for C-diff again and also rhinovirus (the common cold). So far those are the only possible reasons they have found for the fever. She is on 2 antibiotics (not including her weekly Septra) and they are thinking about starting a third tonight. She is so miserable and uncomfortable that she is getting Oxycodone every 4 hours and Morphine as needed. Her eyes and nose were itching so badly that she has also gotten Benadryl.

She is so drugged that she sleeps 90% of the time. I don't like her being drugged, but I hate even more when she does wake up and is so miserable! My heart breaks every time I hear her trying to clear her throat as she is waking up. Oh, and I almost forgot, she started TPN yesterday. TPN is IV nutrition. She has lost some weight and isn't eating much. We also expect that she will soon get a sore throat from the radiation. I originally thought she would be needing a feeding tube again, but the Dr explained how that isn't the best option for her right now. Her esophagus and trachea will get inflamed from the radiation and be prone to infection, so adding a foreign object like an NG tube will only cause more irritation. They prefer to keep using the gut and use NG feeds because it has less risk. TPN can cause liver damage and doesn't keep the gut active, but it is ideal for Annabelle's situation. We will still encourage her to eat by mouth as she is able, but TPN will keep her body strong and able to fight.

Her IV pole is full of pumps and various bags and syringes of medicine that are all going to help her get better. And when she does, she'll be back to her feisty self. I pray it won't be too much longer before that day comes.

Radiation

2011-09-20T21:12:00.000-06:00

I'm assuming (hoping) that most of you who read our blog haven't had much experience with radiation. So here's a little explanation of our daily routine...(I don't have any pictures, but one of these days I will take some)

I get up in the morning and get ready for the day. When it is time to leave, around 7:10 am, I get Annabelle out of bed. She is still in her pajamas and wishing she was still sleeping. She searches around and finds some socks and shoes, a jacket, her favorite blanket, a stuffed animal, and ususally some accessory for the day as well. For example, today she wore pink butterfly wings! Annabelle can't eat or drink before radiation because of the sedation, so that saves time. I try and grab something I can snack on while she is getting her treatment so my head isn't pounding too hard by the time we get home. Obviously it can't smell or that would be torture to the poor girl, so no home cooked breakfasts for me. Usually a piece of fruit or some cereal in a baggie.

I load Annabelle up and we drive up the hill to the Huntsman Cancer Hospital. FREE valet parking is as wonderful as it sounds, and then we head in. I tell them Annabelle's name at the front desk and then we walk ourselves back to the nurses station. They tell us our room number and we go back and settle in. Usually they have a TV/VCR set up for her and she can pick a movie to watch. We wait until the anesthesiologist comes in and has a little visit with us. When they are ready, I wrap Annabelle in her blanket and we walk back to the treatment area. We stop at the desk outside the vault and Annabelle has to say her name so they make sure they have the right kiddo, then we head in.

We go to vault number 5. Yes, they are called vaults, not rooms. I won't tell you what I imagine when I hear the word vault! Anyway, they always have Annabelle's vault decorated with princess and fairy stuff. It helps to keep her distracted from all the equipment while they administer the sedation. They also let Annabelle play with the controls on the machine and move the gurney up and down and in and out of the machine. She enjoys that! Then very quickly the anesthesiologist (if he knows what's good for him) pushes the meds (propofol and remifentanyl) through her line and she immediately goes limp. Like, (I hate to say this) dead limp.

I hated today when the anesthesiologist messed around trying to hook up all her monitors first. She only became anxious and upset, plus he made her come out of the sedation more slowly today and she was a beast!!! Which is why I say if they know what's best for them they do it quickly. Otherwise, they get an ear full from mama bear! Once she is out the techs help me carefully lay her down into position. I really don't like seeing her in that state. It's such a cold look to me. Being moved and situated by others while completely unconscious. I admit, it's a little creepy.

Every day when I walk out of the vault I think the same thing...I wonder if that pit in my stomach is because of seeing and having to leave my daughter in that state, or if it's because I am so hungry! But either way, my tough mom face is on and I head back to our exam room to wait.

While Annabelle is in the vault, usually about 30 minutes, I eat my snack and wait for her to come back. I can leave and go to the Bistro or the gift shop or anywhere else I want but I don't like to. I want to be there just in case they need me and I wouldn't want her to get back to the room and me not be there!

One time while I was waiting I heard an overhead page for a Dr to come to vault 5. My heart sank and I immediately worried that something was wrong! I jumped out of my chair and went to the nurses desk and asked them to tell me who Dr so-and-so was and why they were being paged to the vault my daughter was in! Turns out, they sometimes have to review films (whatever that means) so that's all it was about. Then I apologized that mama bear had come out and made my way back to our room. It doesn't matter how many times it happens, my heart still stops for a second when I hear a page to vault 5!

When Annabelle had her simulation appointment they made a mask for her. I heard them talk about making a mask, wearing a mask, yada yada yada but I had no idea what it was for. It wasn't until I saw pictures on another cancer friend's blog that I learned what it was all about.

It is a plastic mesh type mask that is formed to her head. It is placed over her face and then (don't be freaked out mom!) bolted to the table. Yes, my daughter's head it bolted to a gurney. It is to keep her in position so the radiation goes to the exact right spot. She also has a little pinpoint tattoo on her chest for lining up the machines.

I always leave the room before her mask is even on, but maybe one of these days I will be brave enough to ask if I can see it being done. Truthfully, though, I don't know if I could handle it! When she is finished the anesthesiologist carries her back to the exam room and she finishes waking up. Normally she is quite alert and does great. They check all her vitals and we wait for 30 minutes and then we are on our way.

Annabelle always makes a scene waving and saying bye to everyone as we make our exit. The valet brings our car, we load up and back down the hill we go. When we get to the Ronald House, Annabelle is hungry and wants some food! It's only 9 o'clock in the morning and I feel mentally, emotionally, physically exhausted already. Some days we then go to clinic for chemo, labs or transfusions, or we are admitted for inpatient treatment.

I then pray that this treatment kills the cancer, but not my daughter. That's the reality of our life during radiation. And the sad part is, we are only on day 6 of 28. The side effects of radiation haven't even begun. Some won't hit until 6 weeks after she finishes. I am so grateful she has the good attitude that she does. I couldn't do it without her sweet smile!

Griz Game

2011-09-17T16:31:00.003-06:00

While we were home in Montana we got to go to a Griz football game. The Jadyn Fred Foundation invited Annabelle and she was thrilled! The day included tailgating, hats, shirts and tickets to the game. We figured it would be best to leave Layla with my mom so that we could focus on having a special time with Annabelle.

Lookin' good in her Griz hat. She honestly loved the thing and wore it all day!

Tailgate party. She was being such a tease for the camera.Mrs. Montana was also there. I went to high school with Kila (and my mom and her dad work together) and now she works with the Jadyn Fred Foundation as her platform. I don't think that it was by chance that she chose them and soon after Annabelle was diagnosed with cancer. I never would have known about the foundation if it wasn't for Kila. So, thank you! Annabelle loved Kila's sparkly crown and sash. The smile on her face says it all!
She made this pathetic sad face just for the camera, but she really did have a great time!

Proud mommy and Annabelle at the game.

I was so honored to meet the Fred family and be able to thank them in person for the donation they made to Annabelle's fund. They were so kind and welcoming! I was truly inspired by them and the way they are honoring their sweet Jadyn. Thank you to the Jadyn Fred Foundation and all you do for these special kiddos!

My Hero

2011-09-12T08:13:00.001-06:00

I just have to brag and say how proud I am of Annabelle. She is such a little fighter. We had a fun filled Saturday and a late night, spent Sunday in the car driving to Utah and I had to pull her out of bed at 5:45 this morning to leave for radiation. She could have been grouchy or thrown a fit and I wouldn't have blamed her. She could have complained about not being able to eat breakfast or the hour and a half drive to the hospital. But she didn't. Not a single bit. In fact, the first thing she said when she got in the car was, "On the way to Salt Lake, when we go past Brigham I am going to say 'Hey Brigham, I'm baaaack!'" So you better watch out Utah, she's back and she is fiesty!

Still Home

2011-09-09T14:22:00.002-06:00

Yes, we are still at home! We thought we’d be here for 1 week and that has turned into 3. At first Annabelle’s platelets were too low to start chemo so we needed to wait for them, and it worked out nicely that we could just spend more time in MT while waiting for counts to recover. Of course, she had to fever that weekend as well and ended up in the ER. She recovered quickly from that and felt great so we had a fun week. Once she made counts we were set up to start radiation and chemo the next week. That was supposed to be the day after Labor Day. Well, that Sunday Annabelle woke up with a fever. I took her in to the ER and expected the usual work-up and then to be sent home. But, for some reason, her white blood count was REALLY high. 32, 000!!! That would normally indicate a major infection of some sort so they admitted her. She continued to fever for the next day while they pumped her full of antibiotics. This whole time the Dr's in MT were in contact with our oncologists in Utah and they were able to keep her in Missoula and didn’t have to fly her to Primary’s. They really do have great nurses and doctors on the pediatric unit at Community. This was my 3rd time being admitted with my girls and it is great to see the same faces and have them remember you! We had the same nurse in the ER both times, the same pediatric hospitalist who told us Annabelle had a tumor and who also took care of Layla when she had periorbital cellulitis and adenovirus, and many of the same nurses we’ve had before. There was also a moment that made me shudder. As I was walking Annabelle back to have a chest x-ray we walked past a waiting room. The same waiting room I sat in alone on a Saturday morning and cried while Annabelle had her first MRI. The same waiting room the anesthesiologist told me that “there’s something in there”, and that “something” turned out to be a tumor. Cancer. I saw the chairs I sat in and the TV I pretended to watch. It was like a flashback to that awful moment.

Anyway, Annabelle and I were there through Tuesday and then got to go home. She ended up needing a blood transfusion while we were there and then they sent her home on IV antibiotics. Since then she has been doing really well. Somehow, though, Layla managed to get sick. She has an awful nasty cough and runny nose which, of course, led to ear infections. It is impossible to keep the 2 kids separated all day, especially since they share a bedroom, so Annabelle has been wearing a mask all the time. I’m praying that that, and the antibiotics, will keep Annabelle from catching it too. The plan is to drive to Utah on Sunday for Annabelle to start treatments early Monday morning. Pray that things go well with radiation and that Annabelle stays strong!

Moments

2011-09-05T15:17:00.001-06:00

This past week has been filled with moments. Moments where everything felt “normal”. Normal, meaning that cancer wasn’t controlling them. It was as if the C word never entered our little family. One day I was inside with the girls baking cookies. Josh was outside working in the yard. We heard the motorcycle start up and we headed out. Josh was giving the girls rides as they snacked on fresh cookies. In that moment, all was right in our little world.

Saturday was the opening day of the bow hunt here in Montana. Josh was off hunting, the girls were playing and I was making potato salad with items from the garden. Then the girls and I went up to watch a volleyball game at the gym. If you were looking back in time, that could have been September of any year. Only this year, Annabelle happened to have no hair, making it obvious that it must be 2011.

Walking to the post office to check the mail in the morning. Pulling the girls in their wagon. It felt like it could have been any other day. The smell as Josh started the boat for the first time. Snuggling in bed with the girls in the morning. Eating carrots straight out of the garden. Each of these “moments” felt so good. So right. So normal. So…..b.c. (before cancer). In my mind cancer can’t take those memories away from me. I expect that some day I will be remembering a moment, a feeling, or an experience and I won’t be able to recall whether it was actually before, during or after cancer. Because those moments don’t care, they don’t judge. They just happen, and all is well.

Home

2011-08-30T13:20:00.000-06:00

Sunday the 21st Annabelle was trying to get off the bench at church and apparently I was sitting on the end of her dress. I leaned to the side and she kind of fell off the bench. She bumped her head on the bench in front of us, but honestly it was not a big one. She said it didn't even hurt, but over the next few minutes we watched it swell and bruise right in front of our eyes. It was insane! I knew for sure that Annabelle needed some platelets. We left church and I talked with Robert and he got us set up that afternoon to get a platelet transfusion. It was actually a blessing that she got that bump because it allowed us to get the platelets done Sunday instead of finding out on Monday when they drew labs and then having to get them before we could leave for home.

We spent Sunday night at my friend Jessica's and then Monday the 22nd we woke up early and went to Annabelle's radiation simulation appointment. As we were told, everyone there was SUPER nice and accommodating. It made it a lot easier on me. Things went quickly and Annabelle also got her "tattoo". It is just a small dot on her chest that they will use to line the machines up perfectly every time. Since we had labs on Sunday we were able to head out right away, pick Layla up in Tremonton and drive home to MT! The girls were good travelers but I was happy to get out of the car.

The week wasn't as great as I imagined it would be. The girls didn't sleep or nap well, Annabelle got a fever and ended up in the ER until 2am one night and her counts didn't recover as quickly as expected. We had to make extra trips to Missoula for lab draws and the whole thing was exhausting. However, I can now see how that worked out for the better. Annabelle's platelets were too low to start chemo and radiation so treatment has been delayed until the Tuesday after Labor Day. That means we get to stay in MT for a whole extra week we didn't expect! We are taking advantage of it and getting some stuff done around the house and having some fun. We are off to Yellowstone today and the girls are SO excited to sleep in a cabin. They are silly. The best part is, Annabelle's counts were great yesterday and she is feeling really good. Back to her normal goofy self. We are going to have a great week!

We're Going Home!!!

2011-08-20T14:36:00.003-06:00

We are ecstatic that we get to go home to MT next week! This will be the first time the girls and I have been back since Annabelle was diagnosed. While we are excited to see everyone, we need to set some boundaries.

FRIDAY, AUGUST 26th

6 - 8 PM at our house

Anyone is welcome to come visit! Bring a lawn or camp chair, if you'd like, and come see Annabelle. We will provide some sort of snack.

We ask that you please be respectful and only stop by during that time. Our time with Josh is limited and we also don't want to wear Annabelle out. If you and/or your children are sick, please only wave from inside your car. That might sound harsh, but this mama bear has to protect her girl!

I am looking forward to seeing everyone!

Pictures

2011-08-20T13:53:00.006-06:00

Annabelle's first time listening to her very own Song of Love.

Not so happy about being woken up for an EKG.
Cycle #6!

Waiting at MRI.

Waking up after the MRI.

Her latest favorite thing to eat at the hospital...cheese and crackers!

Nice hat.

I walked into the room one day after taking a shower and this is what she had been doing while I was gone!

Looking like a lion with a skirt on her head.

Cruising the halls of ICS. One day she spent atleast 3 hours riding up and down the halls with me chasing behind with the IV pole!

She was so excited to ride this wiggle car through the halls, down the elevator and out to the car in the parking garage when we left after finishing cycle 6!

Willard Bay.

Picnic at the bay. I adore these girls!

Josh spoiled me with flowers on my birthday and our anniversary, which were in the same week. He is too good to me!

Spine

2011-08-13T21:15:00.001-06:00

After seeing Dr Sato yesterday, I learned a lot more about Annabelle's scan results. Basically it depends which Dr you ask whether or not the tumor is gone. Some think that little bit left is still tumor and others are certain it is just dead tissue. Either way, it doesn't change her treatment plan. Also, I was wrong about the cancer still being in the bone. Apparently it isn't. I think. I'm still confused on that whole deal! That probably sounds like I am a bad mom, but I promise I am really involved and care, it's just very complex.

One thing I did learn is that the tumor ate a lot of her C6 vertebrae. It is compressed already and not the same width as it should be. Because of that we aren't sure how stable her neck is. She has a few restrictions, like no jumping on the trampoline, no horseback riding, no contact sports (so no playing with Layla...just kidding) and stuff like that. Dr Sato was going to set up a consult with an orthopedic surgeon, but when she called them they said they don't do the cervical spine (neck), that is the neurosurgeon's department. So it turns out we are back to consulting with Dr Brockmeyer. I feel good about that, afterall, he IS the best! So around 8:00 last night, Annabelle and I went to pop some popcorn and while we were there the nurse tracked us down and said we needed to head downstairs for an x-ray. I didn't even know they wanted to do one. Turns out Dr Brockmeyer looked at Annabelle's scans and he was the one to order it. This morning Dr Sato came by to tell us that it looked pretty good. I mean, there is still the issue with the C6, but when she flexes her neck it doesn't lean to either side, it holds the correct position. That was very good news for this mama to hear! I will still be making sure she is careful, but it's not likely her neck is going to break if she does happen to trip and fall.

There is still a large possibility that in the future she may need a spinal fusion or something of that sort but for now she is alright. When she gets radiation, however, they will be hitting 3-5 vertebrae and those bones will no longer grow. Because of that she is going to have a shorter neck. When I asked Dr Poppe (the radiation oncologist) if it would be noticeable from the outside, he said it would. No mom wants to think about their kid looking "different" and being made fun of for it, but I really can't imagine that it will be THAT bad. And it doesn't matter anyway. She will still be my sweet Annabelle.

Anyway, so those effects of radiation may complicate the whole spinal issue and add to the likelihood of surgery. There are a few other longterm effects of radiation to the neck that I'm not so wild about, but hey, that's cancer for ya. I'm not a big fan of anything to do with it!

The Results Are In

2011-08-11T17:05:00.000-06:00

It has been a big week for us as Annabelle had her follow-up scans to see how well she has responded to the chemo. When we checked in on Tuesday we went right down for a repeat echo. She had one 2 weeks ago but there was some question about whether her heart was actually contracting like it should be so they decided to repeat it. The good news is it ended up looking fine! While down at echo they came in and said as soon as we finished there we were to go for a CT scan of her chest. Ewing's very commonly spreads to the lungs so they were primarily checking for that. Annabelle was great and held so still for it. Later that day we got the good results: no evidence of disease spread anywhere in the chest!

Yesterday morning Annabelle had an MRI. That was the one we were most anxious about. Remember, her previous MRI showed a large tumor surrounding the vertebral artery shutting off blood flow to the brain on that side, smashing the nerve that controlled her left arm, pushing against the vertebrae to the point of deforming it and causing other various issues. Yesterday the only thing reported was a tiny 10x13 mm mass in the left side of her neck. They said it could be residual tumor or something like scar tissue. Most likely it is still a small bit of tumor because Ewing's isn't likely to completely melt away. Either way it doesn't change her treatment plan at this point. They detected nearly full strength has returned to her left arm and expect no longterm weakness. Also her vertebral artery appears to be peforming normally now. In the beginning we expected to have to have it severed and only have the other side continue to work. Very VERY good news!

This morning the radiation oncologists came to meet us. They explained all the procedures with accompanying risks and benefits and set up appointments for Annabelle. She is scheduled for an initial simulation to get things set up specifically for her treatment on the 22nd. She will start actual radiation on the 29th and chemo at the same time. Radiation will be 5 days a week for approximately 6 weeks. She will have to be sedated every day for the treatment because she needs to be absolutely still in order for the radiation to hit the specific area and not get too much other healthy tissue. When we aren't inpatient at PCMC for chemo we will probably be staying at the Ronald McDonald house in SLC. There is just no way I could drive back and forth from Tremonton every day.

After the radiation docs left Annabelle went down for a bone scan. I just tracked down the NP to get me the results and they were good as well. The report stated a decrease of disease in the bone but not a complete resolve. Basically that means that there was still some uptake of the dye into the area but not as much as on her previous scan. Quite honestly I hope to get things explained a LOT better tomorrow when we see our actual oncologist but this information was the most I could get for today.

Good News........I think

2011-08-05T17:58:00.003-06:00

The last couple of weeks have been normal cancer life with Annabelle. Chemo, blood transfusion, platelet transfusion, fever, ER visit, etc... She was scheduled to start Cycle 6 of chemo today, but her ANC was still zero yesterday. The plan is to check her counts again on Monday and if she is ready, start chemo on Tuesday. This will be another 5 day set. The whole 5 day part is bad, but this chemo is actually easier for her to handle. It doesn't give her mouth sores and when she gets a fever it hasn't lasted as long as with the other set of chemo meds. The exciting part is, she will be repeating all of the imaging done at diagnosis to see how well her tumor has responded to the treatments! I am excited to see, but nervous at the same time. I have hope that it will be gone, but with it being in the bone I don't think that is possible. More realistically I want to see it NEARLY gone, possibly off of the nerve it was affecting so badly before, not so tightly packed around the vertebral artery and reduced in the vertebrae. That's not too much to ask for, is it!?! The worst thing would be to see it have spread somewhere else in her body (not likely, but possible) or not have responded to chemo. We can see from the outside the tumor has shrunk, though, so I am honestly expecting good results!

The good news (I think) that we recently got was regarding the plan for local control. Annabelle's case was discussed at tumor board with the specialists from all areas: oncology, radiation oncology, neurosurgery, pathology, etc... and they anticipate that Annabelle will receive only radiation, not surgery! Since it is on the bone, radiation is required and since we have to do that anyway there is no need to put her through surgery as well. She may need spinal surgery at a later time to fix her vertebrae but from a cancer fighting view, it doesn't look necessary at this time. Of course, this is all subject to change as they review her scans.

BIG decisions will be coming and this is where I am asking for help. Please, PLEASE pray for Annabelle. Specifically for good news from the scans, inspiration for the specialists who will be reviewing them and making the plan, and peace of mind for us as we await the results. Thank you!

My baby is two!

2011-08-01T11:27:00.001-06:00

I can hardly believe my sweet little Layla Jane is 2! She is SO much fun and irresistibly cute. It's true. She loves dogs, food, her cowboots, her big sister and lazing around in bed. I'm not joking, she will randomly put herself in bed and just chill! Sounds like a dream, huh!?! She's really that great! We call her sweet cheeks, Layla Janer, LJ, baby doll and many other terms of endearment. When she sits on the swing with shorts and her cowboots on, it warms my heart. I am so in love with her!

Josh surprised the girls by arriving a few days before Layla's birthday. He insisted that he would not have missed her day! Since Annabelle had to go in for treatment on her actual birthday, we celebrated the day before. I took the easy way out this year and did a cupcake theme...cupcake wrapping paper, we went to a cupcake shop and picked out some for the party, and I made her a cupcake shirt and a skirt to match.

At Vintage Cupcake Co.

Oh, my mouth is watering!

The birthday girl and her proud big sister!

Goofy girls, but cute outfits!

They have cars like this at PCMC and every time Layla is there she wants to play in them the entire time. I decided to get her her very own (in pink, of course) and she LOVES it!

Josh did a great job picking out "cowboots" for her. She loves them as much as Annabelle loves hers. SO cute!

Cupcake anyone!?!

I am so lucky to have my sweet Layla babe!

Annabelle Update

2011-07-27T12:50:00.003-06:00

I know, I know, I haven't updated in a long time! A lot has happened but I'll try my best to keep it brief. Annabelle is now halfway through cycle 5 of chemo! That means only 1 more cycle and then it's local control time, which most likely means surgery and radiation. I'm certainly not excited that she has to go through that but it will be nice to see how well she has responded to the chemo so far. They will repeat all of the imaging and we will be able to see how much her tumor has shrunk. We know that it has shrunk because you can see from the outside and her pain went away after only a few days of chemo so I'm hopeful that it will be nearly gone by now! It was so hard to know the extent of the damage before because it was surrounding things and hard to image so I'm expecting that we will know a lot more and feel a lot more comfortable going into the surgery than we did when they almost did it before chemo. But that's all in the future. I haven't even mentioned the past yet...

Chemo has been about the same as before. Fever every time her counts get low, C-diff again, still no nausea from the chemo (Whoohoo!), and yummy tube food. The good news is, she only has to take Flagyl once a day so I don't have to get up and push it through her tube in the night anymore! Her feed tube clogged a few weeks ago so I had to pull it out at home. Her platelets also happened to be really low at the time. They were at 2,000 and normal is over 100,000 so I didn't feel comfortable putting the tube back in. If it were to scrape her throat she could bleed a lot very quickly because with low platelets she wouldn't be able to clot well. She was eating pretty well so she got to leave it out for a couple weeks. We did put it back in before she was discharged on Sunday though because this is the chemo that gives her bad mouth sores and she doesn't eat anything at all during that so she needs her tube food then. Really, overall things are going well.

Josh surprised the girls and came down for Layla's birthday (more to come on that later) and we all had a great time. Annabelle was feeling really good, Layla was adorable as always and life was good! The girls were already in bed when he got here, so when Annabelle woke up at 1 AM wanting a drink I told her to look in my bed. She kept saying "Who is that?" It was hilarious! Then when she realized it was her daddy she didn't want to go back to sleep!

Other things to document so I don't forget...
One evening I was driving Annabelle to the ER at PCMC because she had a fever. They always want me to go to our local ER so they can start her on antibiotics right away, but then they ALWAYS make us go in the ambulance down to PCMC. Then we don't have a car there and somebody has to bring one down and yada yada yada, it's a big hassle. So now I just put her in the car and head for SLC. (It probably makes it seem like I am risking my daughter's health just for my convenience, so judge me if you'd like!) Well I was hurrying to get her there and figured if I got pulled over they would understand. There had been construction on the interstate and I heard it was bad the last few days so I took Legacy Highway. (those of you familiar with Utah will understand this) Sure enough I got pulled over going 75 in a 55. But I wasn't putting anyone in danger, I promise! There was hardly any traffic on Legacy. As I was handing the officer my license I told him why I was speeding and he looked in the back to see my bald headed cutie whimper and start crying and handed me back my license, made sure we didn't need an ambulance and sent us on our way with instructions on the quickest way to get to PCMC! Just one of those little, very little, perks to having a kid with cancer.

After watching a video online of another cancer fighting cutie at the Make-A-Wish wishing room to place his wish I asked Annabelle what she would want to wish for. In the past she has always said Disneyland but that night she said she would wish that her Daddy could come back to Utah to visit. Broke my heart, right in two! Such a sweet girl she is.

My Beauties

2011-07-13T14:33:00.007-06:00

Here are some of my favorite pictures done by my wonderful sister-in-law, Ashley!
Ashley Malena Photography (or find her on Facebook)

As you can see, I couldn't pick just a few!

The Wiggle

2011-07-10T16:46:00.003-06:00

LOVE this little girl!

Crazy Fun

2011-07-10T14:01:00.012-06:00

I haven't updated for a while because I'm soaking up the fun of being with Annabelle and Layla. Seriously, these girls are crazy. Consider Sunday dinner today...Layla was shaking her head back and forth so fast and babbling crazy things at the same time. Soon Annabelle joined in and the two of them serenaded (?) us. That's exactly how it has been lately. Annabelle seems to be more energetic and goofy than ever. I was thinking it was the cancer that has changed her, but maybe it's just the age/phase. I do believe, though, that now she knows when she feels good that she better make the most of it! She dances around while listening to her favorite songs. She does victory dances when playing games. Layla pesters Annabelle until she squeals and then laughs and laughs. They have been a lot of fun. I'm too tired to write too much, but here are some pictures to enjoy.

And for Annabelle's update...Turned out she did have C-Diff again, or still. Apparently it is common for Ewing's patients to continually have it so she will be on Flagyl for the duration of her treatment. She also was having a really high white count and her hematocrit dropped quickly so she was put on another 2 antibiotics. They wanted to give her a blood transfusion but they literally didn't have a 2 hour period where her central line was available to infuse. That's a lot of meds going on! They were going to give her a peripheral IV just to give her blood but then the Dr decided to drop one of the antibiotics so that opened up a slot and she was able to get some blood. After that she recovered quickly and was SO happy when she was discharged on Wednesday. She said when the nurse unhooked her that she was going to run around her room and sure did! It was hilarious. Having to be isolated to her room because of the C-diff really drove her nuts! Since coming back we have been playing outside, soaking up the sun, going bowling, shopping and we have plans to visit a cupcake shop soon! We are livin' it up this summer.

For some reason her left foot has gotten blisters all over it but by the time we notice them they are already healed and the skin is peeling off. Any other cancer moms have experience with this? They are not open wounds so I'm not too worried about infection risk (unless she picks at them) but it was the weirdest thing. We never see them coming until they are already at that point and she is getting more each day. I'll have to take a picture and post it. Also last night when I was flushing her line, I couldn't get any blood to draw back. (I always check just to be sure since we had issues with her other line.) I had her lay back and reposition and then it did come. However, today when I was flushing I had the same problem except now I can get it to draw back no matter what position she is in, so home health is sending out Heparin and Cath-flo to see if we can get it working before lab draws tomorrow. The hardest thing rigth now is that I have to get up in the night and giver her meds through her feed tube and her central line. It gets exhausting after awhile. All I want is one night of uninterrupted sleep. Maybe next year...

Our Life with Cancer

2011-07-03T20:14:00.007-06:00

Just FYI - I can't get blogger to work right for me tonight, so please ignore the random highlighting!

Our life since Annabelle was diagnosed with cancer has been so unpredictable. We are still really new to the scene (only about 2 months into treatment) but I have already learned that it is so unpredictable. It is near impossible to plan anything because I never know what Annabelle's counts are going to do or when she might fever and end up in the hospital. You gotta go with the flow, and I'm usually more of a planner, but we are adjusting. You have to expect the unexpected. Two months ago I imagined Annabelle being absolutely miserable and vomiting all the time with treatments and spending all day and all night in bed with me by her side trying to keep Layla entertained at the same time all while getting little sleep. You know, I figured the worst case scenario was the norm. I was pleasantly surprised when Annabelle started chemo and did so well with it! For weeks at a time she would be energetic and play, and without her bald little head you wouldn't know she had cancer. Then there is the other side of the coin too... We came in for this treatment and she started off feeling great and I expected to breeze right through, and then this morning hit.

She was feeling great and for the first time wanted to go to church here at the hospital. In fact, she was so excited she keep asking, "Is it time for church to start yet?" When the time finally came we headed down to the 3rd floor and things started off fine. Then right in the middle of the Sacrament she threw up. Keep in mind we are sitting front and center, as I was asked to give the opening prayer! All I could do was try to catch it with my hand until some sweet girl rushed to my aid with a box of Kleenex. Oh, and did I mention her feed tube came half way out!?! Imagine being in the hospital with your child recovering from a minor surgery, let's say an appendectomy or something like that, and thinking "I'll go to church, I'm sure that will be a good opportunity to feel the Spirit and bring some comfort." And then right in the middle seeing a sweet, bald little girl nearly puke her NG tube! I didn't get a chance to see anyone's reaction, I just wrapped up all the puke-y Kleenex in her blanket she also puked on and out the door we went! I'm sure that was a first for most in attendance though.

As soon as we got back to the room Annabelle wanted to lay down and fell right to sleep. 2 hours later she woke up with a fever. We're talking over 103 F. She also started complaining that her head hurt. We did the normal blood cultures and they gave her a dose of Rocephin (an antibiotic) and also some Tylenol. The Tylenol did nothing for it so the NP reluctantly agreed to a dose of Motrin. They don't normally give Motrin to cancer patients because it can mess with their platelets, but Annabelle's platelets are great right now so they allowed it. Five seconds later she puked it all up. Nice. The nurse was able to get it re-ordered though and she took it nice and slowly, 1 ml at a time. Thankfully she was able to keep that down and back to sleep she went with a cold washcloth on her head. When she woke up her fever had finally broke. Yay! Unfortunately it is climbing back up again. She just got more Tylenol but I'm not too optimistic about it helping. So we'll see what the night brings. All in all she took 3 naps today and is already in bed for the night. I sure hope she can sleep!

They also decided to test her for C-diff again. She never had a re-check before coming back in and her poop looks and smells awfully suspicious. Of course she hadn't pooped since Wednesday so it could have been leftovers sitting in there, but I'm interested to see what the result is. We should be getting it back within the next hour or so.

Family Fun

2011-07-02T09:54:00.007-06:00

We have thoroughly enjoyed the last week with Josh here! The girls have really missed their daddy! Annabelle and I were able to spend almost a whole week with him before having to come back for chemo. Layla is the lucky one who gets to be with him until he leaves next week! While we were all together we made sure to have some fun. We played outside, went shopping, worked on projects, had a pizza party, watched a movie, played Wii, had a picnic and went to the aquarium. Being from small town Montana, we don't get a chance to go to such fun places very often. The girls LOVED it! Annabelle had been looking forward to it for weeks and it seemed to have met all her expectations.

Layla is so cheesy with pictures lately.

Annabelle wanted a picture with the orange fish. It was her favorite. It is the smaller one above the white and yellow one between the girls.Josh and I touched the manta rays in the pool behind us. Annabelle wouldn't get near them and Layla was a little too freaked out also.Annabelle opted out of the girls photo and Layla decided to show off her figure. Classic.Both of the girls passed out on the way home. Success!And now for a little update on Annabelle. Last time I posted we had just found out she had C-diff. Right after that she started throwing up every time she got any feed so we ended up in the hospital an extra day. They gave her Reglan, a pro-motility med, to help her stomach push the food down into her intestines. Then that gave her cramps so we had to treat that as well. But within a day she was feeling great and ready to get out! We got home Friday afternoon and Josh arrived that evening. Annabelle felt SO good all week long and we had a great time together.

Yesterday (Friday) Annabelle and I got up early to head down to PCMC. She had surgery in the morning to pull her old central line and put a new one in. There was some question as to whether or not the non-functioning lumen could be responsible for the frequent fevers so the docs and I decided to replace it. This time she got just a single lumen and so far so good. She really started getting worried when we were taking the south elevators and only went to the 2nd floor. She kept saying she just wanted to go to number 4! Fourth floor is familiar territory and she feels comfortable here. She knew she was getting a new line but actually seeing where we were headed freaked her right out! When she woke up in recovery she started asking again, "Why are we still in this room? I want to go to number 4!"

Right before I took this picture she said she is "So happy she has a new line because that old blue one didn't work and she doesn't want any more fevers!" I guess the relief of having a new one outweighed the drama of going to the surgery. (That, and Versed works wonders at taking away the memory of that moment of being taken from your mama by some anesthesiologist with some weird hat thing on their head!)

Isn't she beautiful!?! The surgeon did have a few things to say after the procedure. He said it was difficult to remove her old line. Normally once you get past the cuff they should slide right out. With Annabelle's he had to lean and really pull to get it out and that's not normal. He thought it might have been pinched between her clavicle and 1st rib and that would explain why it never worked. Then I corrected him and said that it had worked for several weeks after placement and he said that that wouldn't make sense then. So why it wasn't working is still a mystery, but they did culture it and we are waiting for those results. The other thing Dr Downey (the surgeon) had to say was that he tried to put the new line in her neck but he hit an artery. You want the line in a vein, not an artery. He claims he was certain he was clear of her carotid artery so he doesn't know what he hit. In his words, "I think she may have some abnormal anatomy in her neck and should have an ultrasound to check things out." The attending oncologist didn't seem too concerned about it and said we would just wait and if any problems arise then we will look into it. However, the NP said if the surgeon suggested it then we should have it done. After the holiday weekend craze is over I will talk with our regular Dr and see what she thinks about it.

For now we are enjoying some quiet time at the hospital. When she is feeling so good is when it is hard for her to be here. She would rather be out playing with Layla, but she does enjoy the hospital and her friends here. Today we took our lunch and ate outside and did a puzzle. There's a whole other world of stuff you can do at the hospital when your counts are good and you feel like leaving your room! I think it will be a fun stay for this 5 days of chemo.

C-diff

2011-06-22T10:24:00.005-06:00

As indicated in my last post, Annabelle is feeling MUCH better. And by the end of today I expect her to be EVEN better! Why? Because last night she tested positive for C-diff. I'll spare you the details but let me just say that 4 year old poop is nasty. 4 year old cancer patient poop is even more nasty. C-diff poop is really nasty. So 4 year old cancer patient C-diff poop is THE nastiest! Enough said.

The good part is now we know atleast one reason why she has been so sick and miserable. She has probably had it for several weeks since they wanted to test her last time we were in for chemo but then she never pooped again so they let us leave. Now she is on an antibiotic (Flagyl) to treat it and we get to drop the Vanco, which means she won't have to get Benadryl anymore. Which means no guaranteed nap for both of us every dose. Bummer. But overall this is, in the words of Martha Stewart, "A good thing".

She should be back on track in the bathroom department within a few days but I might make her wear a pull-up for the ride home, just in case!

Mama Bear

2011-06-21T17:23:00.004-06:00

When I worked at MT Cancer Center I had a co-worker that called me Mama Bear. I think it was somewhat of a derogatory term because she wasn't interested in having kids and I was "so young" (21 *gasp*) and pregnant with Annabelle. (Just for the record...I was married and it WAS planned) Anyway, I didn't mind the title and this week I think it has been quite appropriate for me! Nobody messes with this mama bear's girl. NOBODY.

We had a few bad encounters with some nurses and a tech that brought out my claws. Nothing that seriously harmed Annabelle, but things that are NOT acceptable. 99% of the staff here is AMAZING, which only makes the bad few seem even worse! Annabelle has been miserable the past few days so I have probably been a little grouchy too. Fevers, very bad mouth sores, bone pain, reaction to blood transfusion, reaction to Vanco (an antibiotic), etc... She spent a couple days heavily medicated with oxycodone and morphine and had to get Benadryl before getting every dose of Vanco so she was either sleepy and grouchy or quite happy and loving! Thankfully we are past the worst of it now. As soon as you walk in her room you can tell she is feeling better. Today when Dr Barnette (an Oncologist) was here she took the TV remote and tried to turn him off. Those of you that know Dr Barnette can understand why that is so funny! He LOVED it and left the room laughing histerically about it. My spunky Annabelle is back!

Today is a nice beginning of the end of this hospital stay. Her fevers are getting fewer and farther between, her ANC is 300 (up from being zero for days), her mouth doesn't hurt as bad, she hasn't needed morphine, and we made an executive decision about next week. Josh is coming and I have been pretty bummed out that Annabelle and I were going to have to come back for her 5 day set of chemo instead of getting it done before he comes. But this afternoon Dr Barnette and I decided to not have her start cycle 4 until next Friday, July 1st. That will give us most of the week to be with Josh, and Annabelle should feel GREAT the entire time. Her counts will be up and stable and no chemo so she shouldn't get any fevers. It is going to be great! Such a good ending to this chapter. I can't wait to be back with Layla AND have Josh here. It will almost be like normal, except we'll be at my in-laws and Josh won't be working, so kind of like a vacation. A vacation from the cancer scene for a few days. Sort of.

Summer O' Fun

2011-06-16T19:25:00.002-06:00

I know it has been WAY too long since I last posted. Of course people worry when I don't post when really it should be the other way around. When Annabelle is doing well we are busy playing and having fun and don't have time to post. When she isn't doing well I have lots of time to update. The last few weeks Annabelle has done GREAT! As in Tony the Tiger Grrrrrrrrreat! She has had so much energy and we have enjoyed lots of things. My sister, Moria, came for a few days and we shopped, ate out, played in the yard and WENT TO THE CIRCUS!!! Annabelle was so thrilled to hear that a circus was coming to Tremonton, we just had to take her. Afterall, this is the Summer O' Fun. I want her to be able to enjoy her good days to the fullest because we just don't know what things will be like the next day...or after surgery and/or radiation...or next summer...etc. The girls had a good time at the circus and even rode on an elephant. I was quite shocked that Annabelle actually wanted to ride it, but when she came off of it she had the biggest smile (behind her mask, of course) I have seen in a long time! It was good for my heart.

Aunt Ashley and Uncle Derek also returned from their honeymoon so the girls took advantage of the few hours they were here and played and played and played with them. They were probably happy to leave and spend time alone again without the girls begging Derek to play! Besides all the visitors we have been playing outside, going for walks, swinging and just having fun.

Annabelle has finished cycle 3 of her chemo. Both the inpatient and the outpatient treatments went really well. She was feeling so good it was hard for her to be inpatient for a few days and just sit around! She started cycle 3 on the 7th of June, and here we are 9 days later with a fever, just like the last 2 cycles. Apparently the majority of the time kids on her treatment will fever during their nader (the few days that their counts bottom out). If she doesn't fever between them, it would really be lucking out. Too bad it can't be the other way around! The past couple days she has been getting more tired and her counts were dropping but yesterday she started feeling pretty bad. She kept gagging during her feeds at night and it was getting her so upset that we had to turn them off the last 2 nights. She was so weak I had to carry her around. Then yesterday evening she was laying in her bed while I was putting laundry away and she started gagging and then threw up. Thankfully her tube didn't come up this time! It had clogged this past weekend so I had to put a new one in, and trust me, that's about all the fun we can handle for one week! Anyway, she had a priesthood blessing and then was able to make it through the night. However, this morning she woke up and started dry heaving and had a fever. So off to SLC we went. I knew she was going to need a blood transfusion in the next couple days but I was hoping we could make it through without the fever! So here we are back at PCMC for fever and neutropenia (F&N). She has been sleeping off and on all day and snuggling with me and overall just feeling pretty miserable. We are still waiting for the transfusion, don't ask why it is taking so long, I don't get it either! Grrrrrrrr. I know once she gets the blood she will feel much better and then her body can deal better with the fevers.

Overall, with the exception of the past couple days, things have been going really well. I was almost feeling guilty, like cancer shouldn't be this easy. I guess I won't ever say that again...

Overdue Update

2011-06-03T12:34:00.003-06:00

I haven't updated in awhile because I have been enjoying time with family! Annabelle got out of the hospital as planned 1 week ago. She had a few GREAT days that made me so happy. Josh came down and lots of family was here to celebrate Ashley (Josh's sister) and Derek's wedding on the 31st. She played and played and was SO happy. By Monday she was getting more emotional and tired and I knew her counts were dropping. On Tuesday she was able to make it to the temple for the wedding and pictures but then we headed back to the house to rest. Both Annabelle and Layla took nice long naps while Josh and everyone else went off to the dinner and reception. When Annabelle did wake up she wanted to go so we made it over for a bit of dancing. Layla was a dancing queen and LOVED it!

All the visitors left on Wednesday so we enjoyed some time with Josh. He even took me on a lunch date! :) Throughout the afternoon Annabelle was fevering a bit. After dinner when I checked her temp it was 101.9 so off we went to the local ER. She had labs done on Tuesday so I already knew she was neutropenic. I assumed they would want her to come to PCMC but the oncologist wanted her to go to our local hospital to get started on antibiotics and fluids right away. So Annabelle and I got another ambulance ride down to SLC. This time they flashed the lights and drove fast! I was glad because we were exhausted and I just wanted to get here and get settled in for the night.

Josh and Layla came down yesterday to visit and brought our car. Then Bev came later and took Josh and Layla back to Tremonton. Annabelle's hematocrit has been dropping so she got a transfusion yesterday and now feels much better. She hasn't fevered since we got here but she does have a sore in the corner of her mouth/lip area. She was on an extra antibiotic for that but the cultures came back negative for HSV so she is off that now. Also, this morning her platelets had dropped more so she will get a platelet transfusion this afternoon. Once she is done with that they said she can be discharged. Yay! We will keep our appt to be back inpatient on Tuesday for chemo and hope that her counts are high enough to start.

Josh headed back to MT this morning and we are already missing him. It breaks my heart when Annabelle cries and says she just wants to go home to Montana or says how much she misses her daddy. I don't like it either, but this is the way it has to be.

Pictures

2011-06-03T11:48:00.004-06:00

I haven't posted any pictures for weeks (sorry!) so here they are all in one post. Atleast they are in chronological order. :)

I think this was the day that Annabelle had to go downstairs for 4 or 5 different scans. At that time she was still in a lot of pain whenever she moved. (Ignore the scary look on my face, I think there was a better pic but I must have loaded the wrong one!)
Annabelle with my friend, Jessica, watching a recording of her friend Kailey's dance recital. She loves Jessica and Kailey!

She sleeps with her hands up in this position most of the time. So sweet.

Annabelle and her cousin, Jackson, at Grandma and Grandpa Yates' house. Annabelle enjoys sporting headbands and flowers with her new 'do.

Me and my girls outside the Salt Lake Temple at Ashley and Derek's wedding.

Layla and Josh.
The perfect couple and the kids....Annabelle, Layla, Jackson and Braden are neices and nephews and Kimberli is the daughter of a good friend.
Layla likes to ride Jessi!
Annabelle and Layla bonding while watching a show together in the hospital. I know, I am so lucky to have such wonderful girls! And it doesn't hurt that they are so stinkin' cute!

CureSearch

2011-06-02T23:17:00.003-06:00

I promise a much needed update will come tomorrow, but for now just a few thoughts on my mind and a video to share. So first grab a box of tissues and watch this. Annabelle is not in this video, but these are all fellow fighters here in Utah. A small glimpse into the daily life of a cancer fighter and their family.

THOUGHTS:

I am so proud to walk around with my bald headed Annabelle. To me it says "I am the lucky one chosen to be the mother of this precious girl. A child so strong she had to be given this (cancer) to test her." Don't you dream of having such an amazing child? I don't dream it, it is my reality!

As I was reading more about some of the other Utah Moms and their Cancer Fighting Cuties tonight I was overwhelmed and the tears flowed freely. All these amazing, strong women and their precious children. I don't feel like I can possibly be part of their group. At first I was freaked out and didn't want to be. I couldn't allow myself to read their blogs. How could I keep up and remember all of them??? I was so caught up in my own little world of cancer and wanted to keep to myself. But now I find strength through their experiences and pray that I might have the opportunity to provide that same strength to someone else.

I have the best husband in the world. He showed up to the hospital today with a memory foam pad for me. He cut it down to size and made my "bed" up for the night. Seriously, how could I do this without him!?! I'm kind of independently stubborn, meaning I like to think I can do everything BY MYSELF, but I wouldn't want to do it without him. Even though he has to go back to MT and I will only see him about once a month, he is my partner in this!

Ready to Roll

2011-05-26T17:49:00.002-06:00

We are ready to roll on out of here...tomorrow! Annabelle has continued to handle the treatments really well, and for that I am very grateful. She had her first blood transfusion yesterday which helped a lot! She has more energy now and, overall, just feels better. The few days before she would walk to the end of the 4th floor hallway and then be winded and need me to carry her back. Last night she briskly walked all the way down and back. Then she rode a bike around the unit and took one of the cars for a spin too! She even ordered some food yesterday and ate a few bites. She ordered more tonight and is eating better than I thought she would.

Tonight she is finishing up her last day of chemo for this cycle. When the Dr came in this morning to talk about her getting out tomorrow, she got the biggest smile and was so happy to talk about everyone she was going to see! It made ME happy to see her so excited. The only bad part about today was when they made me pull out her NG tube so they could teach me to put it back in myself. She was not impressed. I haven't heard her scream like that in a LONG time. They will check her counts in the morning and if her RBC is dropping again they will give her another transfusion for a little boost before we go. Then we'll be on our way! I can hardly wait to sleep in a bed, snuggle Layla, see Josh and not be woken up every 2 hours at night. It's going to take me a few days to catch up on some much needed sleep, but I fully intend to do so!

She threw up what?

2011-05-25T11:07:00.003-06:00

Annabelle is still doing really well with her treatments! She makes me smile because it's just no big deal to her anymore. She doesn't act any different when she is getting chemo than she does when it's just fluids. Now she doesn't even sqwak when they wake her up to pee at night. She hardly even opens her eyes. She just does her business and then it's back to bed! The nurse told me that during the night when they come in to do vitals she doesn't really wake up but as soon as they put the blood pressure cuff on her she automatically sticks her finger out to get the pulse ox put on. So sweet of her :)

Monday night we decided to try putting her anti-nausea meds through her feeding tube instead of her IV. I thought that would be one less alarm going off in the night if we did it that way. About 30 seconds later she sat up and puked all over. All over me, the bed, her PJs, pillow, blanket, you name it. If it was within 2 feet of her, it got hit! Serious projectile puking. Oh, and her feed tube came up as well! Let me give a little visual for those of you not familiar with NG tubes. It goes in through her nose and then down the back of her throat and into her stomach. When she puked it up it came out of her mouth so one end was sticking out her mouth and the other out her nose. Thankfully the nurse was right there and quickly put the tube back down while she was still recovering from the puking. Apparently the whole meds through the feed tube wasn't such a good idea! Then last night (Tuesday) her 5 pm feed was running, that's her dinner, and she had just finished playing a game and doing a puzzle with me. It was time for her bathroom break so we did that and as soon as I got her back in bed she puked. That time it must have been from all the moving around. Luckily her tube didn't come up that time though! Now I make her lay down and rest while the feeds run so hopefully that doesn't happen anymore.

Her ANC is back down in the expected range at 3200 today. Her hematocrit has been dropping and today it was 23.2 and her heart rate has been a little high, which means she will get her first blood transfusion today. Annabelle will finish this cycle of chemo tomorrow, and if she continues to do well she will be discharged on Friday. Yay! Josh's sister, Ashley, is getting married next week so all the family is starting to arrive and the festivities are beginning! I know it is going to be hard for Annabelle because she just won't have the energy to enjoy everything. I am a little worried about everyone wanting to see her too, but her counts will likely bottom out around wedding time, so don't be offended if I keep her isolated! The last thing we want is for her to catch something and have to come back to the hospital! I'm praying this 12 day stretch is the longest we ever have to stay! :)

Cycle 2

2011-05-23T14:25:00.004-06:00

Just a quick update before I lay down to take a nap while Annabelle is too! Annabelle's ANC went from being 0 to 200, then 1100, then 15,000! The lab thought it was wrong so they made the nurse re-draw, but as we expected, it came back the same. She is off Neupogen (the shots) but it is the reason for such a high ANC count. She finally stopped fevering so she is off the antibiotic as well. She started her second cycle of chemo yesterday. This cycle she gets 2 new drugs, Etoposide (also called VP-16) and Ifofsamide. She did really well with them! No nausea, no nothing! They have switched her feeding schedule up a bit too. She gets tube fed through the night and then during the day she gets 3 different bolus feeds. It's like getting 3 meals. She has done well with them and today she was able to handle the bolus feeds running over an hour. Previously they took 2 hours but now she only has to be hooked up for an hour each time! She really, REALLY hates that she gets woken up every 2 hours at night to go pee. They do that to protect her bladder and make sure she is getting the chemo out of her body but it sure makes for one grouchy girl and one tired mama!

They still haven't figured out what is wrong with her central line. She had a fluoroscopy this morning which was basically a waste of time because they can't get anything in or out of that lumen so they weren't able to get any contrast in to see the line. It is some kind of defect with the line itself and most likely she will have to get a new line placed this week. Super! Not.

And lastly, I thought I'd share a cute little conversation I had with Annabelle earlier today. Downstairs at imaging they gave her a little ladybug stuffed animal and once we were back in her room this is how it went....

Annabelle: I think I want to share this ladybug wih Layla!
Me: Oh, that is so nice of you. She will love it! Remember how I was thinking about doing a ladybug party for her 2nd birthday? That would be perfect!
Annabelle: Yeah, and I want to do a butterfly party for you mom!
Me: Oh?
Annabelle: And I want a starfish party for my birthday!
Me: Wow, a starfish party!?! Cool. What kind of party should we do for daddy's birthday?
Annabelle: I think a deer party.

LOVE that girl!

Beautiful

2011-05-21T22:11:00.003-06:00

I never would have guessed I would ever say these words but....I buzzed my daughter's head today. I have been wanting to do it and last night she decided that she would like to have it done today. I got it buzzed down to 1/4 inch and then she looked in the mirror and started crying. She said "Mommy I still want to be a girl. I don't want to be a boy!" That's when I lost it. We hugged and cried together and I explained that Heavenly Father made her a girl and that the length of her hair couldn't change that. She was still a bit upset but we did a few puzzles and soon she was fine. The only other time she said something negative was when she said (in a sad, worried voice) "I'm afraid daddy is going to say I look like a boy". I assured her that would never happen and then sent a quick text to Josh to remind him to be extra sensitive on Skype tonight and say how beautiful of a girl she is! I was so happy when she said to her friend, Kailey, tonight "Hey, do you like my haircut?" She seems comfortable with it right now. I'm sure there will be moments ahead when she will miss her hair, but I'm so proud of how brave she is!

Around 8:30 tonight Annabelle was starting to fall asleep and I was happy to think we were getting back on a normal schedule. Then her Fortaz (antibiotic) infusion finished and they flushed her line with saline. Then when they went to Hep-lock it, it wouldn't budge. They can't get anything to go in or out of her smaller line. She has a double lumen, meaning there are 2 different tubes that branch out of her central line. The larger one is working great, but the smaller one is acting like it is clamped, but it's not! I made them change the cap and that didn't work. Then the charge nurse tried that again...no luck. Now they are trying some t-PA which is meant to dissolve any clots in the line. We are still waiting to see if it works but it just doesn't seem that really is the problem. If if doesn't work, they will try t-PA again, and if that doesn't work they'll get the Dr to decide what next. I hope we get it resolved soon so that we get some decent sleep tonight. So, I hate to leave you all hanging, but I'm signing off for the night. Oh, one more thing....Annabelle's ANC was 1100 this morning. Yay! She can leave her room again and go for a walk or go to the play room. It has almost been 24 hours since she last fevered so if she is still fever-free in the morning she can start chemo again! (I never thought I'd be so excited to say that!)

Counts!

2011-05-20T23:22:00.000-06:00

Yesterday started off a bit rough. I was feeling like we were taking a step backward with the whole feeding tube thing. Plus Annabelle can't seem to go 24 hours without a fever. I knew she would be better off with a feeding tube, but I also knew she would be freaked out about getting it put in. I had a Child Life Specialist come in to talk with her about it beforehand and she didn't want anything to do with it. I really think she is the type that you just do it and get it over with. None of this chit chat for hours and all that. They did give her some Ativan before to calm her a bit, which helped some, but she still wasn't impressed! But now that it is in, it's no big deal. Now she is getting some nourishment and she already has more energy. It was definitely the right choice.

Her hair is almost gone now. I wish I could just shave it off but she is not interested in that. So for now it's still a big mess all over her bedding and she hates it. She's constantly reaching a hand over the edge of her bed and whining "Get this hair off of me!" But soon enough she'll be a bald beauty. My bald beauty.

Like I mentioned, she is still fevering at random. All of the blood cultures are still negative and they can't find any reason for the fevers, but it isn't unusual either. The best news came this morning when we got her blood counts back. The last few days her ANC has been zero. Today it was 200! She actually HAS a count now! Yesterday her red count was right on the border for needing a transfusion (23.8) but they decided to give her another day. Today it was up to 30! Her platelets are also at a great number. This morning they were actually hopeful that her ANC would be high enough tomorrow to start chemo again. That would be right on track for her protocol. See, they used to do 21 day cycles, but 5 or 6 years ago they condensed a cycle to 14 days. Not everybody has the counts they need to be able to start the next cycle after 14 days, but the research shows that the more condensed the treatment, the higher the cure rate. So her not being ready to go again at 14 days wasn't that big of a deal, but the possibility of it now is great! But even if her counts are good tomorrow, she fevered again at 10:00 tonight, so that delays things a bit.

And, yes, it is 11 o'clock at night and I am writing this post. After having Ativan yesterday she took quite the nap, which resulted in her staying up super late, which meant sleeping in late this morning, then a late nap while I was out this afternoon, so here we are again pulling a late nighter! It works out fine in the hospital but this schedule will never work outside the walls of PCMC so hopefully we can get back on our normal schedule before we get out of here! And in case you're wondering why I was out for a bit this afternoon......well, it's because I have the best husband ever who surprised me by setting me up with a spa appointment today! Jessica came to stay with Annabelle while I got a haircut, massage and a pedicure. He seriously spoiled me! And I got to experience life outside these hospital walls for a few hours. It was a nice break, but Salt Lake traffic is a bit much for this small town girl. (However, I am happy to report that I didn't get honked at at all today)

Hard Days

2011-05-18T12:41:00.001-06:00

This whole cancer thing is getting more and more real. I really do try to be positive about it, especially around Annabelle, but today I am just mad. Really mad. So I am going to vent here....My sweet little girl should not have to go through this! She keeps spiking fevers so we are stuck here. She has sores in her mouth and doesn't have much of an appetite so they want to put a feeding tube in. She cries whenever they mention it and says she will start eating, but she just can't. She would probably feel better if she was getting some nourishment in her so it may be for the better.

And today we began saying farewell to her beautiful hair! She isn't sad that it is falling out, she doesn't really get that yet, but she is annoyed that there is hair everywhere. All over her bed, her pillow, her blanket, everywhere. I knew all of this wouldn't be easy but so far it kind of has been. Well, not easy, but not as bad as I imagined it to be. So I guess a few bad days out of every few weeks isn't so bad!

On the brighter side...if we are here until Sunday, the delicious corn chowder is on the menu. And we have a washer and dryer across the hall. It's great for the surprise trips when you get here with only 2 pairs of underwear! And we have upgraded to a room with a pleather couch bed and a bigger bathroom. I mean really, can you ask for more than clean underwear and a pleather couch!?!

Fever and Neutropenia

2011-05-16T21:59:00.000-06:00

Well we enjoyed a few days at home before things got crazy again. Saturday my parents and my brother, Jay, arrived for a quick visit. Annabelle was excited to see them and super excited that they brought her bike down! Layla, however, woke up from her nap screaming and holding her ears. So I loaded her up and headed to Instacare in Ogden. Sure enough, ear infections! Just getting to the Instacare was enough stress for me. That blasted GPS took me to the wrong place. Times like that make me want to throw it through (not out) the window. But then I love it so much when it tells me where the nearest Cafe Rio is. It's a love hate relationship we have.

So after Layla and I returned things were normal for a few hours. My parents left Sunday and then Annabelle fell asleep on the couch. After nearly 4 hours she woke up and was extra ornery. She felt a little warm and sure enough her temp was 101.2! Anything over 100.4 we have to go to the local ER to have her evaluated and blood cultures drawn because infections, particularly Central Line Associated Blood Stream Infections (CLABSI), are very serious when your immune system is down from the chemo. Annabelle's white blood cell count was SUPER low, that's called neutropenia, so she and I got a late night ride to PCMC in the ambulance. She was not as excited about it as I was but she ended up sleeping most of the way.

So here we are, back the ICS unit. So far the blood cultures are negative, urine was negative and so was her strep test. Normally they don't find a cause of the fever but they go ahead and do antibiotics. She has gotten some mouth sores so she doesn't eat or drink much so she is still getting IV fluids too. Neutropenia is one of those things that just comes with the chemo so it isn't that big of a deal. It's when you get a fever along with it that they bring you back in-patient.

Annabelle is a bit of a celebrity around here it seems. I'm sure they make all patients feel that way but she is known for her pink sparkly boots. The Drs text each other about their friend in the pink boots and it is actually passed on every shift change. They also talk about how cute everyone says she is! Sometimes I wonder if they say that because she is the only one that still has hair! Either way she IS cute.

And just for fun here are a few things Annabelle has said/done lately....
She nearly gags every time she goes pee because the antibiotics make it so rank. The first time she thought it was my breath that smelled so bad! I quickly corrected her on that one.
She said to me in a worried voice "I can feel something here. Come look!" Turns out it was just her ribs. The poor kid didn't have much meat on her bones to start with so she is getting a little boney now.
17 times a day..."There's something coming out of me!" as she spits into a tissue.

Thank goodness she keeps me laughing. I sure love my Annabelle Bananabelle!

Tired Days

2011-05-14T10:30:00.000-06:00

Annabelle was discharged from the hospital on Tuesday. She was so excited to be unhooked from everything! No more taking that blasted IV pole every time she had to go to the bathroom. No more being woken up every 2 hours by the nurses. She is free! She has been doing great since they took her off the pain meds. She hasn't needed anything at all. She hasn't been nauseous either, just tired. As her blood counts get lower she gets more and more tired. She has been taking a nice long nap every day and spends plenty of time just resting on the couch. But when she is feeling good she loves being outside playing. Grandma and Grandpa have fun outside toys and it's so good to see her playing with Layla again.

In an effort to avoid as much stress as possibly I decided to trim Annabelle's fingernails while she was asleep one night. Randomly that night she woke out of a dead sleep and cried "Oh no, I can't scratch my itch....there's something wrong with these!" Such a funny girl. I also have to give her a shot every day. I was afraid people might see her running from me around 3 pm every day but she has been great! She says it's just a little one and it doesn't even hurt. She sits so still and watches as I do it and then picks out a Hello Kitty bandaid to put on. It sure makes it a lot easier on my heart that she doesn't mind it.

Yesterday Annabelle went back to PCMC for a treatment. It was just a quick push of Vincristine so it was no big deal. She cracks me up when she calls the hospital "the kids place". It really is all about the kids there. Just the place we need to be to endure this trial. Josh's family has been SO good to us. They've let us move in and stir up their lives. They help out so much with Layla so I can take care of Annabelle. Speaking of Layla, she is such a little doll! We are so blessed to have her with her easy going personality. She sleeps good at night, cracks us up during the day, and takes nice long naps then lays in her bed quietly for who knows how long until we finally check to make sure she is alive! She has been great.

We are set up to go back to the hospital next weekend for 5 days of inpatient treatment. Until then we'll be enjoying time at our Utah home and doing our best to keep Annabelle comfortable.

It's a sign

2011-05-08T20:12:00.002-06:00

Annabelle did great today. She did have a few meltdowns but what can you expect from a kid going through chemo. A couple days ago she had to use the extra push on her pain pump 31 times. 31 times! Today....only once. She is amazing. I got to kiss on my Layla babe and play with her for a couple hours too. Oh, and I won something too! Seriously, I owned this day.

Check it out.....
Show & Tell

Day One (and two)

2011-05-08T11:26:00.004-06:00

Yesterday was Annabelle's first day of chemo. She took it like a champ. She has not been nauseous at all and hasn't complained about any side effects. Today she will get 1 more dose of Doxorubicin, which she had yesterday as well, so we're not expecting any side effects, and then she is done until next Saturday. We also changed her morphine a bit and she did quite well with it. With one of the chemo drugs (Cytoxan) she is required to get up and pee every 2 hours because it can have negative effects on the bladder. I was really worried we would have a super long night because the past few days every time she gets up she starts hurting and then it takes several extra pushes of pain meds to get her comfortable again. But last night she didn't need any extra! Huge relief. In fact she was quite annoyed that she had to get up so often and couldn't wait to crawl back in bed and go to sleep. They mix Benadryl with an anti-nausea med to counteract some of it's side effects so I'm sure that helped keep her sleepy.

In fact, a few times she was so mad it was hilarious. She'd scream and insist that she go all by herself which is kinda tough when you're all hooked up to stuff and you're only 4 years old and you're too short to reach the toilet paper on your own. She wanted me to get behind the shower curtain and close it completely shut so she wailed on about that for a few minutes. Then she got back in bed and was still so mad and she is so stubborn (definitley gets that from her dad, right!?!) that she climbed back out on her own and went back to the bathroom to reinact it ALL BY HERSELF. Another time she layed back down in bed and yelled at the nurse while she was doing the delightful job of measuring and dumping her business, "Hey NURSE! I went poop in there!" I guess I need those moments to assure me that she is quite alright and she is feeling comfortable.

Thankfully Jessica came to visit just as they were starting her chemo. I really didn't expect it to get to me but as they pushed that first med into her CL I lost it. At that moment it became very real. My beautiful first born daughter was getting chemo. She really has cancer. I had a few tears and Annabelle saw me cry for the first time since her diagnosis. She was worried about me and kept asking why I was sad. Luckily she was distracted quickly with SpongeBob and Jessica and I had some Dr Pepper!

The only bad thing that happened yesterday was she had a slight fever. CLABSI, central line associated blood stream infection, can be very serious so at any sight of a fever they draw blood cultures and start antiobiotics, just to be safe. It was probably just her response to the chemo but they are extra cautious. Thankfully she just started treatment yesterday so her white blood counts aren't low yet so she should be fine.

Today is going to be a great day. My sweet little Layla Jane is coming down to visit. I haven't seen her since Tuesday and I miss her like crazy! Josh went back to MT yesterday but Layla is staying at Grandma and Grandpa Yates' in Tremonton. When Annabelle is not in the hospital we will be back there with her but it will be several weeks before we are all back together again. I can't wait to kiss her sweet cheeks and play with her!

D Day

2011-05-06T19:13:00.003-06:00

Today was diagnosis day. It took them a long time and extra testing but it is now official, Annabelle has Ewing's Sarcoma. (Now don't go googling it, you'll either scare yourself or be misinformed) It is super rare in kids her age. They usually see it in teenagers when they are growing rapidly. The other unusual thing about Annabelle's case is the location. Very rarely (almost never) is it in the neck and on the spine. It is more commonly found on long bones, such as the femur or tibia. Sarcoma means a cancer of the soft tissue, muscles or connective tissue. However, it can originate in the bone. They don't know for sure where Annabelle's started. It is a fairly aggressive type of cancer which calls for intense treatment. She will be starting chemo tomorrow morning.

We won't know specifics of the treatment, like how much will be inpatient, until we see how well she handles it. The good news is that she could see significant shrinking of the tumor and therefore relief of her neck/back pain in 5-7 days! That would be amazing! I'm praying it happens that quickly. That is what makes her so uncomfortable right now. Today we had to go down for imaging 3 different times so she has been in a lot of pain. We've increased her morphine dose now so she is doing better as long as she stays laying down.

We are finally done having nearly every scan and test possible and there is no other cancer ANYWHERE! Not in her bones, not in her marrow, not in any other organs. That makes me so happy I could dance! Her treatment will be long but since there is no spreading her prognosis is good. The first round of treatment (called "Induction") is the strongest and will last 12 weeks. After Induction is complete she will have scans and tests to see how the tumor has reacted. Then she will have "local control" which means surgery or radiation or both. After she recovers from the local control she will move onto "Consolidation" which is more chemo, but not so strong. Consolidation lasts 22 weeks. This is the set up protocol, but of course things could change. We have a tough year ahead of us, but we are all fighters!

More Imaging

2011-05-05T20:34:00.003-06:00

First off, here are a couple pictures of Annabelle. Here she was a couple days ago.

Here she is after having her CL put in yesterday. She is smiling because that meant no more pokes!

Annabelle ended up having 2 scans done today. First was an echocardiogram. This is just an ultrasound of the heart. Some chemo can have negative effects on the heart so they need a baseline to compare with. As expected, her heart looked fine. Second was a CT scan of the chest, abdomen and pelvis. Once again everything was clear. So far we haven't found any spreading of the cancer. I am feeling so thankful that we found it as quickly as we did. Of course I wonder how much better off she would have been if we found it weeks earlier, but I can't change that. I did take her to the Dr and they did do complete lab work-ups and they x-rayed her shoulder, which is where she said she was hurting. I do feel good though that I pushed to get the MRI done. Anyway, enough of that....

Tomorrow she has a bone scan and that will be the last of the inital imaging. Yay! When she has to get up and be taken down for tests is when she starts hurting. It will be nice to not have to do that for a bit. She really wanted to go for a walk outside and down to the Forever Young Zone playroom but she was hurting too much after the CT. I'm hoping the first day she doesn't HAVE to go anywhere she will feel up to getting out some. Once she starts chemo her white blood cell counts will go down, making it easier to get infections and catch bugs. When they are below a certain level she won't be allowed to leave the unit, so I hope she gets out some before that happens.

Abbreviations

2011-05-04T20:09:00.004-06:00

I've added abbreviations and definitions to the right side bar of the blog. Hopefully it will help you decipher some of what I am saying! I'll keep adding to it as I notice terms I use that not everybody is used to seeing.

You're welcome, mom! :)

Resting

2011-05-04T15:44:00.002-06:00

Annabelle is resting comfortably after her procedures this morning. She had her central line inserted and the bone marrow biopsy done. Besides the ride back up to her room, she has been sleeping since then. She did not sleep well last night so she definitely needs it. I need the sleep as well but for now I am enjoying the quiet of the room. We also have a nice view of the Salt Lake valley and it is a gorgeous day out there so I'm soaking up a little Vitamin D!

Everything went well with both the procedures. We won't have the bone marrow results for a couple days. Several scans are set up for tomorrow, but lucky for Annabelle she won't even have to be poked for sedation. We can use her central line for everything and I think she will love me for picking that! For now it's just pain management and resting. And waiting....lots of waiting for results.

Now that her pain is under control we are doing well. It's hard to explain unless you've been in a situation before to feel it, but I am amazingly calm right now. I know it is comfort from all the prayers being offered of our behalf. When I think of our little tiny home town, I can feel the love from the good people there. When something happens to 1 person there, it's like it is happening to everyone. They all come together to support each other. They don't ask "Is there anything I can do?" they ask "What can I do?" So, thank you to everyone!

Settling In

2011-05-03T18:09:00.003-06:00

We have been having a hard time controlling Annabelle's pain. Once the Loratab kicks in she is good for an hour or so and then she slowly goes downhill until she can have another dose. After speaking with Dr Brockmeyer and Dr Bruggers we decided it would be best to admit her again. It probably sounds like bad news but really it is better this way. They can keep her comfortable and we won't be running back and forth with all her appts this week. Besides, she likes ordering food here. She can get whatever she wants whenever she wants it! She hasn't had much of an appetitie at all so I let her order whatever she wanted for dinner and she picked quite the nutritious variety: Corndog, Soft Pretzel, White (Vanilla) Ice Cream, Chocolate Chip Cookie and Milk. I just hope she eats any of it at this point! Then we'll focus on some healthier options.

Tomorrow morning she will be having surgery to place a central line. If you're not familiar with what that is, here is a paragraph from the handout they gave me: "A tunneled central venous catheter is a tube made of soft, flexible plastic. the catheter is tunneled under the skin and placed in one of the veins just under the collarbone. The catheter is long enough to reach the large vein that enters the heart. This vein is called the superior vena cava. The catheter is tunneled under the skin to help prevent infection. There is a small cuff around the catheter about one inch inside your child's skin. Skin grows into this cuff and keeps the catheter in place. The cuff also acts as a barrier to infection. Tunneled catheters have one, two, or three outside openings (lumens)."

Annabelle will be getting a double lumen. The reason we chose this is because she won't have to be poked all the time anymore. They can draw blood for labs and give treatments through her central line. The down side is that she can't swim with it and you have to be careful and cover it while showering (which she won't do anyway), so she'll probably be getting sponge baths! We'll just have to see. The other option was a port (port-a-cath) which stays under the skin. You can swim and bath as normal with a port, but you still have to be poked to access it. She is tired of being poked so we went with the double lumen.

At the same time as the central line placement she will have a bone marrow biopsy. They will take a sample from each side (they do this on the iliac crest or back side of your pelvis bones). Good news would be no cancer in there. I'm being optimistic, but if she does have Ewing's Sarcoma, which is their guess right now, it is known to spread to the bone marrow, especially in kids. She's also set up for a bone scan, CT scan and echocardiogram this week. Whew! That's a lot of stuff. They are having a hard time getting an exact diagnosis so additional pathology is taking some time. The latest word today was that we can hope for that to come by Friday. That's why we're getting everything done now, so we'll be ready to start treatment asap.

Sorry if any of this is confusing to all of you trying to keep up with us! I have definitely benefitted from my time working at Montana Cancer Center in Missoula. The terms and most of the procedures are familiar to me, which is a relief. I can't imagine trying to carry on a conversation with the doctors or nurses without having heard most the words before!

Together Again

2011-05-01T17:59:00.004-06:00

Annabelle was discharged from the hospital yesterday afternoon after having an MRI in the morning. We drove back to Josh's parents in Tremonton to be reunited with our seemingly long lost child, Layla.

Today was supposed to be our first day without a trip to the hospital. Unfortunately that didn't happen. Annabelle has always had bowel/constipation issues (I know, too much information!) so I wasn't too worried that she hadn't gone in a while. But narcotics tend to have that affect as well so she was getting double backed up. Today she wasn't able to stand up straight. She kept bent in half or curled up in a ball crying and screaming. It got so out of hand we had to take her to the Emergency Room here in Tremonton. She was in so much pain they thought she might have a bowel obstruction. It took 2 different kinds of enemas but she finally was able to go and instantly felt better. You're probably thinking I was overreacting taking her to the ER but it was insane. Way worse than any pain I've ever seen her in before, including getting stitches in her head! Ok, enough of that.....

Late last night we got the call with the results of the MRI. There was no other sign of cancer anywhere else. Wonderful news!!! What a blessing and relief to know we are only dealing with the one area right now. Hopefully we will enjoy a few normal days before we go back down to make a plan of attack.

Comfort

2011-04-30T08:58:00.002-06:00

I find comfort in knowing that whatever happens in this life, my family can be together forever. We are an eternal family.

Here are a few links to learn more...

Good Things to Come

Temple Blessings

1 Down

2011-04-29T17:36:00.002-06:00

We've got one surgery down. Everything went really well and they got plenty of tissue for testing, testing, and more testing. We won't know the results of the biopsy until Tuesday afternoon at the earliest. And then at that point there still might be more testing needed. We did, however, get the inital results of the spinal fluid and it was CLEAR! YAY! That means the cancer hasn't gotten in there yet. They did send it off for a little more thorough work-up and that could always present a surprise change but at this point it is looking good. Really good! Annabelle is doing great this evening. She had to lay on her back for a minimum of 2 hours following the lumbar puncture. It helps to reduce the chance of headaches that so often follow a spinal tap. By then she was wanting to sit up and wanted to know why she couldn't get up and play! She has gotten up and went potty and did fine. No headaches or issues. She is quite impressed with the bed controls and keeps sitting herself up and then laying back down. Apparently she feels pretty good! She was happy to get eating again which made her able to take oral Loratab, which probably accounts for her good mood! She is going to stay overnight to have an MRI tomorrow. They will be looking at her brain and checking for any spread of the cancer. Assuming everything goes well, then she will be discharged until we have the biopsy results back next week. We will then have a big meeting with the entire team (neurosurgeons, oncologists, pathologists, radiologists, etc...) to discuss her treatment. She will probably be seen in clinic some days before then, but we plan to head back to Grandma and Grandpa's in Tremonton.

We came in this morning prepared for a very high risk and complex surgery and now we're ending the day watching movies and ordering room service. Not bad, not bad at all. An extra special thanks to my great friend Jessica! She came today and brought us lunch from Cafe Rio (we so need one of those in MT) and stayed for the afternoon. And thanks Zack for watching the kids so she could get away!

Annabelle's Day

2011-04-29T11:28:00.002-06:00

Yesterday was Annabelle's day. We thought it would be her last day up and running around for a bit so we took the opportunity to do whatever she wanted. We left the hospital and headed for Hogle Zoo. Every little girl needs to go to a zoo before starting her fight. Then she fell asleep in the car and we headed to my friend Jessica's. Annabelle was able to enjoy a few hours of normal non-hospital kid life. She played in the yard with her friend Kailey and Jessica took care of me with homemade soup and hugs and a chance to get away from Annabelle for a few minutes to have my first cry since hearing the C word (Cancer). Josh and Zack gave Annabelle a Priesthood blessing and then we headed to meet up with Kim, Bev, Ashley, Hayley (Josh's parents and sisters) and Layla at Chuck E Cheese's. Annabelle's dream came true! I also arranged to have the Chuck E mascot himself come to see Annabelle. She got balloons, free tokens, a stuffed animal and lots of prize tickets. It was great! Just what she needed. Then we headed to a motel for the night. Annabelle was excited to sleep in a motel, what a goof.

We got up this morning and came over to check in for surgery. We thought we were all set to go and then Dr Brockmeyer came in with some news....GOOD news. He spoke with the pathologist again and then a pediatric oncologist (Cancer Dr) and they weren't convinced that it was the most extreme type of small round blue cell tumor. There is a possibility that it is a type they could shrink before removing. GREAT news! It would still have to be removed and her spine would still have to be taken care of, but it would be much less risky than the HUGE surgery they had planned for today. We might still end up with that procedure but there is a chance that we won't! She is in surgery right now and they are just taking a larger piece for biopsy and doing a lumbar puncture to get some spinal fluid. They will test the spinal fluid to see if there are any cancer cells in it and check the biopsy to determine the specific type of tumor which will determine our plan of attack. She will go to a regular room after surgery today, not the ICU and should be up and moving around soon.

Annabelle is doing well considering everything. She is such a tough kiddo. We have a lot of faith and are refreshed with today's good news. We are in cancer fighting mode and have our game faces on.

The one thing I want to say to all parents is hold your little ones (and not so little ones) tight.....and then hold them tighter. Kiss their sweet cheeks and run your fingers through their hair. You never know when they might wake up with a sore shoulder and 5 weeks later turn into a cancer fighter.

The C word

2011-04-28T16:35:00.003-06:00

We had a very serious meeting with Dr Brockmeyer this morning. There was a lot to take in and I'm still trying to process all of it, but here is the abridged version...
Annabelle has cancer. She has what they call a small blue cell tumor. I don't know if that means that it is small (in relation to other blue cell tumors) or if the cells are referred to as small blue cells, I haven't had time to look that up yet. But anyway, the tumor is quite large and surrounds her vertebral artery and includes a vertebrae. It is growing too rapidly to try and shrink it before removing it so she will have her first surgery tomorrow. They will go at it from the back tomorrow and get all that they can from that angle. Then on Monday they'll attack it from the front. They will be removing part of the affected vertebral artery with it and the 1 vertebrae and possibly the nerve which controls her left arm strength. If he can get it off the nerve and leave it intact, he will. But if not, and possibly even if he can't get it off, she will loose her muscle strenth and control of her left arm permanently. With her vertebrae being removed they will either graft a bone from her hip or from a cadavier in it's place. If required they will do a 3rd surgery from the back again fusing the spine for stability. This is all a very complex surgery and critical situation. She will be in ICU for atleast 1 night after each surgery.
It is going to be a very tough recovery, but she is a tough girl! She will need radiation and chemo afterward as well. The Dr repeated several times that we will discuss all of that at a later date. His priority right now is getting her safely through one surgery at a time. The good news is Dr Brockmeyer has operated on another patient with a similar tumor a few years ago. She was a little older than Annabelle, and we won't know until after the surgery tomorrow if it is the same kind or not. But that girl is doing well now, so that was a little glimmer of hope in the situation.

First Visit

2011-04-27T16:49:00.003-06:00

Today was our first visit to PCMC (Primary Children's Medical Center). First thing this morning Annabelle had a CT and ultrasound guided biopsy of the tumor. She did really well with the sedation and it was much easier coming out of it than after her MRI. It did take longer to wear off so we got a little comic relief as she staggered around and slurred her words a bit! After the biopsy we headed over to the Dr's office. We didn't have an appointment but we wanted to check in and see about her appt tomorrow. When we walked in and told them who we were they were expecting us and said they'd been hearing about Annabelle all morning and they'd page the Dr right away. It was nice to feel so important, but I'd rather not have to be that important to a top neurosurgeon!
The MRI cd had just arrived so Dr Brockmeyer took a quick look. He explained to us that Annabelle's tumor is in the bone also and is constricting one of the 2 vertebral arteries which supply blood to the brain. That of course makes surgery much more complex. He needs to consult with other physicians and radiologists after looking at all the MRI and CT scan images to see if they were to operate, how they would go about it. They would need to do something with that artery and also decide if they needed to take some of the bone whether or not they should fuse some of the spine or if it would be stable enough. We have another appt tomorrow morning with Dr Brockmeyer to make some decisions. At that time we'll also have the results from today's biopsy. We should know if it is benign or malignant and whether they will remove it now or try to shrink it some first. So tomorrow is the big decision day!
We are scheduled for surgery on Friday so we have a spot reserved if needed. Annabelle is doing really well and handled things great today! She absolutely loved the toys and activities at the hospital. She made and decorated a paper crown that she couldn't wait to show to Layla. She was also quite proud of her crayon shaped bandaids! She is still in pain and will cry sometimes when she gets bumped but overall she is doing amazingly well. Such a tough girl! Many, many thanks to everyone fasting and praying for us. We can feel your support and are so grateful for it!

Here is a mailing address for those who have asked. Once she is admitted in-patient to the hospital I will let people know where to send things then.
Annabelle Yates
4795 W 8000 N
Tremonton UT 84337

Headed to SLC

2011-04-26T08:15:00.000-06:00

I'm having a hard time even knowing what to say right now. A lot has happened in the last week. I'll try to keep it brief.....

Annabelle's pain was getting worse last week so I called the Dr to see if there was anything we could do for her. She agreed that we needed to get the MRI done sooner and the only way to make that happen was to admit her to the hospital and have it done in-patient. We checked in Friday morning and still ended up having to wait until Saturday morning for the scan. When the anesthesiologist came to get me from the waiting room he said, "I have some good news and some bad news. The good news is she handled the anesthesia well. The bad news is, there's something in there." How comforting, NOT! Once we were back in her room we got the initial diagnosis. They said it was a Schwannoma. A tumor that forms on the end of a nerve. But they also said they would have another radiologist, who deals more with neuro stuff, look at it on Monday. We came home Saturday afternoon with instructions to call the neurosurgeon on Monday for an appt. At that point we knew we would be heading to a children's hospital to have it removed. When we saw the neurosurgeon yesterday afternoon, that's when things changed.

After he and the other radiologist looked at the MRI they both agreed it was not a simple Schwannoma. It involves some of the bone of her spine as well. It is larger than originally thought and the neurosurgeon told me he has never ever seen anything like it. His hope is that the Dr in SLC will have atleast seen one before. So at this point nobody knows what the tumor is. That is a little unnerving. Ok, a LOT! We are off to Primary Children's Hospital in Salt Lake to see the specialist there. The tentative plan is that she will have a needle biopsy tomorrow, an office consult on Thursday and surgery on Friday. The only thing we do know is that we probably won't actually know what it is until she is on the operating table and they open things up and test it. Then that will determine how they proceed with the operation. So really, that means we don't know anything at all.

Josh drove home from Bozeman late last night so that he can go with us. We'll be staying at Josh's parents house until we find out what is going on. It's weird packing for a trip when you don't know how long you'll be. We could be home next week, or Annabelle and I could be there for months. It's all unknown right now. I'm holding together pretty well right now, and I know that it's due to all the many prayers on our behalf! I waited until the girls were in bed last night and then I bawled my eyes out until Josh got home. Annabelle is fairly oblivious to what's going on. All she knows is that her "shoulder" hurts and we are going to grandma and grandpa's in Utah. She doesn't really want to see any doctors in Utah, but she'd like to go to Chuck E Cheese's (she's never been, just seen commercials) and the zoo! Thank you, thank you for all your prayers, love and support!

Update on Annabelle

2011-04-21T09:36:00.002-06:00

Thanks everyone for your ideas and thoughts about Annabelle's shoulder pain. Last week she had a body scan done by a Naturopath. I was fascinated by the whole thing. All she had to do was put her hand on a sensor and the test was actually conducted clear from Arizona! At the same time we were on the phone with the lady and she was reading the results to us. I was amazed with everything it was able to sense! She was able to point out things that I hadn't told her and they were right on, like the sleeping troubles and exhaustion. Then she was able to explain to me how it was all connected to Annabelle's injury.

The first thing it showed was her body's stress level. A normal level is around a 7. Anything lower would mean the body isn't responding to stressors (or something like that, I can't remember exactly how she explained it) and anything much higher means your body is having to respond to too much. Annabelle's reading was a 28! Yikes! The other major thing was the test indicated trauma or injury to the neck, not the shoulder. Annabelle keeps saying her "shoulder" hurts, but also says her "back" hurts, but she really points to her neck. I'm guessing she only connects the term 'neck' with the front (throat) area and she refers to everything on the back as her 'back'. All the x-rays, which didn't find anything, have been of the shoulder area. She was also able to tell me exactly which vertebrae are affected. Fascinating!

I was also relieved to hear that it didn't hit on any kind of auto-immune disorder (arthritis). Good news! It also indicated her body isn't processing sugars well right now because her system is having to put it's energy into trying to heal her injury. Josh thinks I'm crazy but I came home and threw away all the candy I could find that he had stashed in the house. The girls got fruit snacks at church and that was the end of those. No more sugary drinks at grandma's house. (How dare I!?!) No more cookies for a while. And yes, it's true, that Easter Bunny will not be bringing any candy to our house this year. Josh is pretty sure I've lost my mind, but I'm desperate to get her feeling better. Annabelle is also deficient in many of the trace minerals so we're getting that straightened out too.

Although the test couldn't actually diagnose anything I felt like it was definitely worth doing. She recommended acupressure and then chiropractics for treatment. I think I have found a chiropractor that does both, but she hasn't gone yet. When she continued to lay around and cry out in pain I called her pediatrician and told her about the scan. She agrees that those might be good treatments but agreed with me that we should do an MRI first. Unfortunately it is quite the ordeal for a 4 year old to have a c-spine AND a t-spine scan. She will have to be sedated and the 2 scans with take a couple of hours on top of the 2 hours spent in the hospital before to administer the sedation and the couple of hours afterward in the hospital in recovery. It takes a special team to be there to coordinate all of this which meant it was scheduled almost 2 weeks out. I was OK with that until yesterday. She was so miserable and spent most of the day on the couch. I called the Dr office and tried to get the MRI moved up but they just can't get her in anywhere any sooner. So right now we are just waiting until the 27th and hopefully we'll get some answers. She may go to the chiropractor sooner, I'm not sure yet. I'm waiting to hear back from the pediatrician this morning on whether that's a good idea or not.

However I am seeing a bit of light at the end of this tunnel! She still has major jolts of pain when she does some things. For example she threw a bouncy ball with her left hand and that set it off. One day Layla stood up in her high chair and rattled it against the table and Annabelle's arm was resting on the table and that did it too. But I feel like we're ruling out a lot of things which will eventually lead us to the problem. Oh, and did I mention Josh is working out of town this week and next week too. It's probably a good thing because we're being awfully lazy around here. (Ok, I'm done whining)

Sorry for such a long post, and if anybody is still reading this you probably better go make sure your kids are still alive or you didn't leave the water running in the sink or something like that. You probably didn't expect to take 1/2 hour to read a blog post!

Help!

2011-04-10T19:56:00.003-06:00

This is very out of character for me. I prefer to have my kids diagnosed by a professional doctor, but I'm desperate here! I need help. They just can't find out what is wrong with my sweet Annabelle. So here's a short version of the story...

Randomly one day she started to complain that her shoulder hurt. She could use it just fine, it wasn't swollen or bruised, it just hurt. Most nights she would wake up crying about how bad it hurt so I was giving her Motrin. This went on for about a week when I first took her to the Dr. There is a history of JRA (juvenile rheumatoid arthritis) in the family and other autoimmune diseases and I was afraid it might be something like that. So they ran lots of labs: blood culture, CBC, CMP, sed rate, arthritis panel, and maybe a few others, I can't remember. Everything came back normal. So we waited for about another 10 days. One day I went to lift her up and I grabbed under her armpits from behind and she burst out crying that it hurt her shoulder. I was convinced something was wrong and it was breaking my heart to see her in pain all the time so about 10 days later she went back to the Dr.

This time they did an x-ray first thing. After that we went back to the office to look at them. Everything looked fine. No breaks or cracks in the bones, no excess fluid around the joint, all look well. Then they took more blood to repeat the CBC and sed rate to see if anything was changing. When the results were back, everything was the same. So they said to give it a couple weeks and see how she is feeling before we call back. So that is where we are at now.

However, the pain continues. At times she doesn't use her left arm. Like getting on the potty or doing stickers with my mom. The necks of all her shirts are getting stretched out because she constantly pulls them off the left side to hold her shoulder. Sometimes you can just look at her and see her left arm hanging limp so her shoulders looked lopsided. For the most part she does play like normal until it starts hurting. So this it what makes me think it's an achy sort of pain in the joint.

Yesterday she was standing on a stair and slipped off to the stair below. She landed on her feet, but kind of hard because she slipped and immediately burst out into tears. Just that small impact of the landing off a 4 inch step had hurt her shoulder. I wanted to cry too. I just don't know what is wrong with my girl. I don't want her to be in pain any longer. My mom tells me that before my sister was diagnosed with JRA her labs would come back normal so it took a while for them to establish the diagnosis. But hers was in her knees and they were swollen for weeks, which led them to the diagnosis.

Something like arthritis is my best guess right now but I'm looking for ideas. Anyone have a clue what could be going on? I'm considering taking her to a chiropractor for a different approach, but Josh isn't so much into that. But I'm willing to do anything that will get her some relief. So please let me know if anyone has any insight, I'll take all the help I can get! Until then I'll be snuggling my sweet girl with a warm rice bag on her shoulder!

Inspiration

2011-04-01T21:02:00.003-06:00

No, things haven't calmed down much around here. Last weekend Layla tripped and fell towards the wood stove at my parent's house. She put her left hand up to catch herself and you can imagine what happened. Poor baby girl got a 2nd degree burn on her hand and arm. Seriously, heart breaking. Annabelle's still having issues with her shoulder. I'm not sure we'll ever know for sure why she is hurting but I pray it will let up soon. But I do have to brag, she's such a brave girl. She doesn't even flinch when she has blood drawn. In fact, she giggled about it today. She definitely takes after her mom, and not her dad! The night terrors are semi-under control so some nights I get to sleep now.

Layla is obsessed with underwear lately. She will dig Annabelle's out of the dirty laundry and try to put them on. She is refusing to wear diapers. I guess I will be going MIA in potty training mode for awhile.

And just a little something that makes me smile lately. My brother sent this to me and it cracked me up. We are the proud owners of 3 pillow pets (2 ladybugs and 1 bee) and the girls LOVE them. They fold them up into the pets and pretend to ride them around the house. Super cute. So without further ado......Enjoy!

I laugh every time I see it!

Will it ever end???

2011-03-24T09:46:00.003-06:00

Things are crazy right now. Crazy in all kinds of ways. Crazy we're cramped in this 2 square foot house. Crazy Annabelle appears to be having night terrors. Crazy Annabelle can't sleep in her bed because then she'll keep waking Layla up every time she has an episode. Crazy she's sleeping in bed with me having seizure like episodes and crying and inconsolable. Crazy Josh is having to sleep in the living room to get any amount of sleep at all. Crazy I haven't had a decent night's sleep in a week. Crazy I'm kinda getting a little grouchy. I have to admit it.

Crazy Annabelle has been having shoulder pain for over a week. And random fevers. So crazy she went to the Dr on Monday. They drew blood and are testing for all sorts of things, such as a blood infection and rheumatoid arthritis. I'm sure it's nothing. Hopefully we'll have all the results today.

Crazy we still own that blasted house in Colorado. Crazy winter doesn't seem like it's ever going to end. It's official, as awesome as it would be, I could never live in Alaska. Crazy Layla's eye is getting worse. It's only a matter of time before she'll have surgery again. Crazy the more I run the thicker my legs get. Random, I know, but true. So much more craziness I could say. But on the bright side.........

We have a house to live in. Our vehicles run well. There was a great sale at Old Navy last week. We were able to play outside all afternoon yesterday. It was wonderful. Good therapy for the soul. 90% of the boys at story time yesterday were wearing camo. I loved it. When Josh doesn't have much work he can keep one of the girls when I have to run the other to town. My grandparents live close by. My girls get to know their great grandparents. Have you seen the Flint Creek Valley? I'm lucky enough to live there. I have crafting and sewing to do as my escape. I made this darling necklace for Annabelle.

There really is much good in my life. I used to be really good at seeing the goodness in the world. I'm getting good at it again. The better I am, the less I have to look to find it. Life is good. I love my family.

I have the cutest girls. Admit it. They're adorable.

Spunky Junky Review and Giveaway

2011-03-09T09:33:00.004-07:00

Have you all met Halsey, aka Spunky Junky? You've got to head over to her place and check her out! She is adorable...

She makes fabulous stuff...

She's got green doors in her house...

She uses phrases like "so frack a lackin' cold outside" and "Wanna Win? Doya? Doya?" And she's got some awfully nice things to say about ShicShoppe. Head on over and check out her blog. You'll feel like you've just met a new friend.

Oh, AND she's hosting a ShicShoppe giveaway. :)

spunkyjunky.blogspot.com

Catching Up

2011-02-28T16:37:00.005-07:00

I realize I haven't posted in a long time. We've been busy. Busy with lots of different stuff.

Layla likes to see how many Weebles she can fit in her onesie.

Annabelle is obsessed with makeup and all things girly lately. She was super excited to put on these Dora nails she got for Christmas.

Some days we are lucky enough to get to watch Javi and Paco.

I just want to kiss his cheeks all day too!
The girls had their gymnastics show.

We've spent a lot of time at the gym watching my brother play basketball.
Aunt Hayley came for a visit. We had a blast!
And I have been working on lots of ShicShoppe stuff. Bags, dresses, skirts...so much fun stuff!

Little Gymnasts

2011-02-01T15:21:00.000-07:00

Annabelle has been taking gymnastics classes for about 6 months now. She absolutely LOVES it! It has been fun to see her get so excited about something and work to pass off new skills. She only has 1 more thing to pass off and she will move up a level. I am so proud of her!

Now that Layla is 18 months old she is taking classes too. I didn't have any plans of starting her but one day I took her through the rotations instead of trying to keep her out of the way and she did amazingly well. She was just thrilled with herself, so there was no going back.

I took a couple quick pictures at class this week. They have a routine coming up during halftime of a high school basketball game so I'll be sure to post pictures of that too.

Annabelle is so proud of her SLP (Safe Landing Position).
This picture is a little awkward, but her bar skills are my favorite!
Layla's favorite is the bar too.
What a climber.

Vinyl

2011-01-19T15:52:00.005-07:00

Have you ever used vinyl? I have to admit, I am slightly obsessed with it! It is a great affordable way to add a little something to a room or project. And.....It doesn't have to be permanent. Perfect for renters!

Anyway, the big excitement is that I am sharing the best place to get your vinyl from.

Expressions Vinyl has the best prices, with lots of options and color choices. I am now an affiliate(which means I get a commission of all sales referred from my links) so tell all your friends to head to my blog and click on the link on the top right hand side and get busy with some vinyl fun!

Here are a few examples of things I've done with vinyl.

And if you're wondering, YES I would be happy to cut and sell you some vinyl. Just e-mail me (or comment) if you would like something. shicshoppe@yahoo.com

Memories

2011-01-18T21:46:00.002-07:00

I needed to record a couple things lately about Annabelle so I thought I'd share them for you to laugh at too!

I had braided Annabelle's hair so that the next day it would be wavy. Usually it is really cute, but this time it might have had a tad more volume than usual. We went to Missoula and as we went through the drive-thru at Josh's business bank the girls wanted suckers. So Josh asked the lady if he could have 2 suckers and the lady replied, "Two? Sure....And did I see a dog in the back too?" Ummmm, no, that would be our 4 year old with poofy hair and a bow in it! We still laugh at how funny it was that at first glance she thought Annabelle was a dog.

My brother, Jay, is a super smart science guy. He got Annabelle some Hubble Science Cards for Christmas, which she loves. Josh was looking at them with her one day and said, "Look, there's Uranus!" To which Annabelle replied, "No it's not mine, it's yours!" I nearly rolled on the floor I was laughing so hard. The best part was that she had no idea what she was saying and how hilarious it was!

My Beauties

2011-01-09T21:47:00.000-07:00

My friend, Lauren, did pictures of my girls in December. It has just taken me a little while to get around to posting a few of them. She did a great job and I am in love with them....the girls AND the pictures, that is.

Some are what I call photo flops, but I just had to share them.

I love how you can see her teeth in these ones. Most kids her age have a mouth full of teeth, but we usually only see Layla's 2 bottom ones. :)

We call this Layla's "camera smile".

And my gorgeous 4 year old...

I love this picture of her! And no, she didn't get those eyelashes from me. I wish!

Thanks Lauren for capturing the beauty of my little ladies!

laurenjensenphoto.blogspot.com

Believe in the Magic

2010-12-17T15:38:00.000-07:00

Clear Eyes

2010-12-08T19:05:00.004-07:00

On Monday Layla had surgery to clear out her clogged tear ducts. I hated the idea of my baby going under anesthesia, but they said it needed to be done. Since being in the hospital her eyes had looked really good so I was wondering if she even needed to have the procedure. When the surgeon was done he came out and told me that both sides were really bad. Not just a little, thin obstruction, but they were quite thick and never would have opened on their own. Now I'm sure glad we had it done!

No more of this:

Now we have this:

My beautiful clear eyed girl! I absolutely ADORE her!

My Snow Angels

2010-11-23T09:25:00.004-07:00

I was surprised how excited the girls were when it started to snow this year. They couldn't wait to get out and play in it. It sure will make the winter a lot more bearable this year!

Layla's hands were stuck inside her gloves that didn't want to fit through the cuffs on her coat but she didn't mind.

Annabelle was SO excited, and not to mention, adorable.

She laid down and asked me to take a picture of her making a snow angel. I didn't even know she knew what one was!

Then I looked over and Layla had plopped down in the snow. She wanted to make one too...however, she didn't have snow pants on! (We're still trying to locate hers)

The fun in the snow didn't last for long though. Now that the temps are below zero and the wind chill is crazy cold we are staying inside! It's the perfect time of year for crafting and sewing projects, my favorite!

I'm loving cutting vinyl on my Cricut.

My girls can never have too many headbands.

And you can see a preview of my girls' Christmas dresses on my ShicShoppe blog HERE

Now it's on to stockings and Christmas gifts...

Photo Flops

2010-11-09T19:02:00.002-07:00

After all the antibiotics Layla has been on, her eyes have been clearer than they ever have before. I thought I'd take advantage of it and a nice overcast day and try to get some shots of the girls for Christmas cards. WHAT A JOKE! First off the bridge I wanted to take them at had a train backed up over it, so we went for plan B. We tried a basic brick wall, but of course the girls would not cooperate one bit. Oh well, they'll just have to suffer through it again sometime when Josh can come help!

So cheesy.

So not in the mood.
Cute matching sisters.

Periorbital Cellulitis and Adenovirus

2010-11-02T11:00:00.002-06:00

*Prepare for your heart to be broken by these pictures!*

Layla has been struggling with eye infections. A few weeks ago they decided that she does need to get her tear ducts probed. Of course there are only 2 pediatric opthalmologists in the state of Montana, but luckily one of them is in Missoula. But he is super busy and can't see Layla until December so we've been trying to get by with antibiotic eye drops until then. Fast forward a couple weeks and Layla falls and hits her head on a dresser and gets a black eye. A week after that I notice that it is starting to swell around that eye. I kept wondering why it would be swelling a week later (I know, mother of the year right here for not realizing earlier what was going on!) and finally called the Dr. She said to bring Layla in because it might be another infection. Duh! Of course it was, why didn't I think of that!?! So the Dr put her on oral antibiotics and warned me that if it got any worse they would need to put her in the hospital to treat it more aggressively. The infection was spreading to the tissue around the eye (periorbital cellulitis) and can quickly make its way to the brain. Scary! So I brought Layla home and we tossed and turned all night on the couch trying to keep Layla comfortable. I gave it a few hours for the morning swelling to fade off, but it never did, and the redness was spreading. So back to the Dr we went. She agreed that it was worse and spreading quickly and admitted Layla to the hospital.

Here she was with warm packs on her little wrists to draw her veins out before getting her IV.

After the torture of IV placement and lab draws. Her veins are so little they just kept blowing so she ended up being poked in 3 different places!
So cute in her little gown, but so sick too!
The crib looked more like a prison cell!
After her first night she woke up and the redness had spread to her left eye. The Dr suspected there was something else going on as well, and he was exactly right with his guess. They did a swab and she tested positive for Adenovirus. It is the virus that causes pinkeye, fevers and respiratory issues, among other things. Josh called me that day and told me that Annabelle woke up with a high fever that morning too. Great! So it appears that Annabelle also has Adenovirus. It just has to run its course so we are trying to endure that.

Getting better!
Look at that frown on Layla's face.
No more IV!
After 3 days, getting ready to go home.
Because the virus is so contagions, poor Layla was in isolation the entire time. She couldn't leave her room and everybody had to gown up to take care of her. I left the room a couple times just to run down the hall for ice and snacks but never left the pediatric floor. Needless to say, we are so glad to be home where Layla can run around again! Layla's bacterial infection is under control with antibiotics so her eye looks much better now, but she still has the symptoms of the virus. However, Annabelle is actually more sick right now. She can hardly breathe and her eyes are all puffy. She constantly complains that she is too cold, even when her temperature is 105. We have a long week ahead of us while they recover but atleast we are getting a little better sleep at home. The girls mostly sit and watch TV while I run around frantically sanitizing things.

A sincere thanks to everyone for all the calls, texts, prayers and love! It is a great comfort to know that so many people care.

New Goodies!

2010-10-28T10:35:00.003-06:00

I have added lots of new items to ShicShoppe's Etsy site. Here are a few pictures to entice you to go take a look! shicshoppe.etsy.com

A Close Encounter

2010-10-23T08:14:00.003-06:00

We've known there is a bear around for quite a while now. It leaves big piles in our yard and gets all the neighborhood dogs riled up at night. Of course there have been rumors that it was trapped or hit on the highway, but I'm here to tell you that as of 6:00 this morning, it is most definitely still here! Josh was leaving this morning to go hunting when he heard something walking. We always have deer around so he looked up expecting to see one, but it turned out to be the bear coming toward him! Of course he had to come tell me....lucky for him I was already awake. It was hard to get a picture but I did some editing of the contrast and color so you can see the fellow. Turns out it's not so little either!

Fall Foliage Vacation

2010-10-18T13:30:00.000-06:00

Josh and I were lucky enough to get to spend a week seeing the fall foliage in New England. We drove to Utah and left the girls at Josh's parents where they were well taken care of and, of course, spoiled rotten! We flew into Albany NY and as we started our journey into Vermont we saw that a lot of the leaves hadn't turned yet. The first week of October is when the colors are supposed to be most vibrant, but things are a little late this year. As we got further into the trip more had turned and it was beautiful! We have many stories from the trip, but I won't bore you with them. I'll just share some pictures.

Robert Frost's house in Shaftsbury VT

I loved the doors on this barn we saw in VT. We drove primarily on the back roads and highways and there were cool barns everywhere. I had to take a picture of this one because I have this vision of barn style sliding doors on the pantry in my dream house that would look very similar to these.
Josh wanted a picture by the signs of all the states we went to. I think New York is the only one we missed, but we really only flew in and out of Albany and didn't spend any time there.
The view of Burlington, VT from the cruise we took on Lake Champlain
You can't go to VT without seeing some covered bridges

This was my favorite tree of the entire trip. It was so bright! I was surprised to see it right after the sign welcoming you to Maine. I thought the foliage would be best in Vermont and New Hampshire but we really loved Maine.

We went to see the foliage, but I was surprised how much I loved the coast! We walked along and picked up shells for the girls. I was super excited to find some sea glass. I'll definitely be making necklaces out of some of the bigger pieces!
The awesome infinity edge pool at the inn right on the ocean in Maine
Josh walking barefoot and packing his man boots...I just love this picture!

Don't you love the classic east coast beach houses in the background? They were everywhere along the coast, just like in the pictures. :)

This was the best we could do for a Massachusetts sign.
Longest covered bridge in VT
Our last stop before heading to the airport was the monument site at the birthplace of Joseph Smith. The grounds are absolutely beautiful.

As you turn off the road and head in:
The upper shaft part is 38 1/2 feet tall....1 foot for every year of his life.

View from the monument.

This is the actual original front step from the Smith home.

And the actual hearthstone from the house he was born in. The only lived there until he was 3, I think, so as a baby he would have spent lots of time near the fire to be warm or crawling around his mother's feet while she stoked the fire. It's amazing to think that his little hands and feet touched that actual stone.

It was a perfect way to end the trip. And we could hardly wait to get back to our girls! I had visions of Layla calling out and running over when she saw me, but instead she reached for grandma! But don't worry, she has made up for it by having to be right next to me for the entire last week.

Annabelle's 4th Birthday

2010-10-15T07:13:00.006-06:00

It's true. My sweet little Annabelle Rae turned four on 10-10-10! The poor kid had to spend her birthday driving home from Utah, so we spread the celebrating out a bit. The day before we had cupcakes and opened presents at Grandma and Grandpa Yates' in Elwood. Then more cake and cupcakes later that night at a family BBQ in Logan.

Josh and I went into a Children's Pace outlet store while we were on vacation and I was shocked when Josh picked out sparkly pink high tops and insisted we get them for Annabelle! Of course she loves them!

When we finally made it back to MT on her actual birthday there was more cake and pizza to celebrate at Grandma and Grandpa Kroll's house.

And what could be in that big box. A scooter!?! Can it be!?!

Every little girl needs a pink scooter.

It is hard for me to believe that my girl is really 4! I absolutely adore her and her big personality. Here are just a few things to document what she is up to at this age:

-Still loves Dora

-Spends lots of time coloring and drawing pictures, mostly of Josh

-Enjoys reading books

-Recently changed her favorite color status from pink to purple

-Wants to help me cook everything

-LOVES gymnastics

-Says she "loves deers" so she doesn't want us to eat them

-A bit picky about what she wears, there are certain outfits she WILL NOT wear, no matter what

-90% of the time she has on her pink "cow boots"

-Adores her little sister

-Super short for her age

-Constantly searches the ground for rocks which she then gives to people as gifts

-Obsessed with jeans or "blue pants" as she calls them, says she can't wear other pants because she can't dance well in them like she does in her blue pants

I am excited to see what the next year with her will bring. I love you Annabelle Bananabelle!

A Visit from Lena

2010-09-29T22:01:00.007-06:00

I was so lucky to get to spend some time this last month with my dear friend, Lena. We met my senior year of high school when Lena came to Drummond as an exchange student from the Ukraine. We made so many memories while she was here and cried many tears when she left! It is always great to have her come back and visit, but this year was extra special. She brought along her fiance, Igor. After visiting everyone in MT, they headed off to Vegas to get married! So, of course we had to have a bridal shower for her.

We spent most of our time laughing like this! I am so blessed to have such an amazing friend.

Annabelle got to come along and enjoyed helping with the gifts.

We even had Lena model her wedding dress for us. Annabelle and Hadley threw flower petals while Larry, the father of the family she lived with here, walked her down the "aisle".

She is gorgeous and her dress was amazing!

She really could be a model. Igor is one lucky guy!(I was so glad Annabelle didn't get any chocolate finger prints on the dress!)

Thank you Lena for making time to spend with me and my family! We all miss you and Igor.

Love you Lena! Hope you're enjoying married life!

Busy

2010-09-21T13:17:00.006-06:00

I've been busy. Too busy to blog. Most of my spare time has been going into items like these:

Getting ready for this:

But here are some pictures of what else we've been up to:

Most of the garden is done, but we've got some little bitty pumpkins coming on!

Annabelle loves to eat carrots right out of the garden for an afternoon snack.
Picking up candy at the parade.

Josh drove a tractor in the parade.
They are seriously growing up way too fast!

And my dear friend Lena was visiting from Ukraine. Lots more to come about her visit in it's own post.