Brinley went in for chemo yesterday and started another steroid pulse. Clinic went wonderfully, Brinley did great getting accessed and everything went so smoothly. Brinley has gained a little weight, she weighs about 27 lbs., and the nutritionist was content with that. She is still in about the 5th percentile, but we'll take what we can get. She got taller too! Her ANC is 1200, so we will leave her at 50% 6MP and 25% MTX. I was hoping for an increase, but not this time. Keep us in your prayers as we go through the hard week, maybe it won't be so bad. Have a wonderful new year.

We have had an absolutely wonderful Christmas. My fingers were crossed for no fevers, and it was a fever free Christmas. It has been a bit so I'll start with one of our traditional activities, of course, gingerbread houses. The kids love gingerbread houses, something about decorating a whole house with candy maybe?

Then we had my Aunt Lori and her family in town from Maryland, so we packed like sardines in my living room and had a musical show the kids put together for their Great Grandma Hanks. It was so much fun, we were all so happy.

Aunt Lori brought chimes, and the kids got to each play one. I have never heard them so quiet, they were concentrating so hard on getting their part right. I loved having people I love crammed into my house, and I am not joking. I didn't used to be this way, it was always too stressful, I guess something about cancer has changed me and I don't care how many people are at my house or how crazy it is. I love being surrounded by people I love. Okay, getting the house ready was a little stressful, but that's a different story.

Next up, the cousin party to exchange gifts at my sister Melanie's house. Another fun night.

Then our traditional Christmas Eve nativity. Here is Joseph and shepherd Brinley, Uncle Dennis and Brinley.

Joseph and Mary (Jade) with baby Jesus, played by Mylee.

Angel Taylor

Then the opening of the first gift on Christmas Eve, PAJAMAS! Never a surprise, but always anticipated!

Leaving some cookies for santa and some carrots for his reindeer.

Brinley writing Santa a letter.

Christmas morning, FINALLY! Jade had been counting down the days and it couldn't come fast enough! Look how happy!

Grandma and Grandpa Torres were here from Las Vegas, we loved having them.

Hanna Montana!

We truly had a wonderful Christmas. I wish I could have been able to find the time to write more, because I have felt so grateful for the Savior and I love the Spirit of Christmas when we get to celebrate his birth. I hope you all had a wonderful Christmas too!

Does anyone know who this is? Oh, I'll just tell you. Nick Rimando, goalie and MVP from Real Salt Lake soccer team. He's quite the celeb around here, they just won the MLS Cup. Can you tell who the true fans are? Taylor was on cloud nine. Nicest guy ever.

This was at the Hope Kids party at the Mayan. It was a lot of fun.

Brinley was feeling goofy, and I just couldn't bring myself to enforce the manners. I mean, look at her face??!! So I took a picture instead. :)

This was at the CCCF (Childhood Cancer Christmas Foundation) party. I will have to write more about it later, once again it was such a bittersweet experience. I just don't have time to to sit and collect my thoughts. I did want to put up a picture of Brinley's cancer friend Serenity. She is a couple months ahead of Brinley in treatment and we have become great friends with their family. It's so nice to have friends who understand. Brinley loves Serenity, and they are moving a little closer to us soon, we're excited about that.
We had to miss the Make a Wish party and heard it was so fun. Hopefully next year it will work out. I will be posting again soon, I have a lot swimming around in my head. We are in a good place and for that I am grateful.

This first picture has a story to go with it. A couple weeks ago, I asked the girls to clean up the living room. Taylor was in charge. She told the girls to take their stuff and put it away. A few minutes later Brinley came in and proudly said "Taylor, I cleaned up ALL my stuff!" Later that night I went into the downstairs bathroom, and could barely open the door....when I started asking around, I found out these were all the things Taylor had asked Brinley to put away.

This is to show how long her hair is growing in the back, and a cute cuddle with the girls too!

The front view...

Master Shifu (sp?)

Master Shifu...

And when one does something funny, they all must try it. Once again, master shifu....

Ho, ho, ho

Our traditional santa hats we wear while putting up the tree.

Jade got the position of star placer this year.

This is to show how insane Mylee's hair is. This is just a few minutes after a bath, the top of it (and ONLY the top of it) completely curls up into a fro. It is so funny!

Brinley and Mylee (notice the ponytails!)

Decorating sugar cookies, and Taylor getting busted snitching some frosting.

This was at clinic. Our favorite therapy dog, Elliot, dressed up as a reindeer. Brinley got to feed him some cheese, she absolutely loved it.

I thought this was the sweetest thing, Brinley was feeling so sick from the chemo, and I saw them just watching TV together cuddling.

The first big snow, it was exciting!

It was too powdery to build a snowman, so Brinley and I figured out a way make one anyway, if you can see it.

There, I've updated with some pictures of us. We are through with one more month of chemo, Wahooooo! Eleven to go! The steroids wore off a little quicker than usual and the girls were playing happily all day yesterday, and she stayed asleep all night already. Time for a good few weeks!!!!!!!!!!!!! We are getting excited about Christmas. It will be a small one, but really, no one cares, we have each other. And we are so happy.

I feel like I left everyone hanging, so I will give a quick update before bed. Sorry for the request for prayers and then...nothing! Well the LP went absolutely wonderfully. The best one yet, I think I will have to solicit prayers more often for those. She woke up fine, no crying, and did not get any fever. Her ANC was at 1300, so they are leaving her at 25% methotrexate and 50% 6MP, and we'll see what next month's counts look like. Clinic was such a long day. They had to give her chemo before the LP, so they did that, and we chatted with her doctors. I sure love them. Then we headed down for the LP. Then back up for her pentamidine. That always makes her sick during the infusion, but then she feels better when it's over. The pharmacy made us wait forever, until one of the nurses had to "break some knee caps" as she put it, and finally got the meds. LOL

Steroids have been rough this time, they increased her dose because she is growing (woot!woot!), but it has made things more difficult. She has the usual sleeplessness, and is quite sick from the dreadful little pills. They have been causing her some bone pain this time, she hasn't even wanted to walk the last couple days and says her bones hurt. So I have been carrying her around most of the time. We are pretty beat, hence the lack of updates. This morning was her last dose, it will be a few days of wearing off and we will be back in business.

She was asking all day yesterday to go to the store, so I finally took her and got a couple things at the grocery store. She was so beat (maybe from getting 5 HOURS of sleep) she fell asleep right in the back of the cart. She missed the whole thing!

Her food cravings have been different this month too. Usually she craves junk food, but this time it has stayed pretty healthy. It's been a nice change. Well, aside from the 10 bowls of fruity pebbles a day, she is choosing somewhat healthy foods. Bread and butter, stuff like that. Thanks for checking in, and look for some pictures soon, I have a lot of them to post, just can't seem to find the time.

I've been pretty quiet on the blog, I guess because I'm feeling pretty quiet myself. I have had a hard week. We are on countdown to one more year of chemo if all goes well. Next year at this time, she will have just received her last dose of chemotherapy. What a Christmas present. I can't wait. I know we can get through this year, I just know it. At the same time it sounds so long. Brinley gets a couple weeks to feel good and then we start all over again. It feels so repetitive, like we are in a boxing match and keep getting knocked down. We finally get back up only to get knocked down again. I am tired of Brinley being knocked down. All of us really. Especially when I know that it is coming. Brinley doesn't know when the blow is coming. It is tomorrow. I will drive to clinic tomorrow to knock her down again. I know, I know, this is what is saving her life. Still, I want to take her and run sometimes so she doesn't have to go through ANY more. We all know where that would leave us, so I am between a rock and a hard place.

The other day I heard her say to someone in casual conversation "I get really sick sometimes, but not today." I am trying so hard to follow her example and just go day to day. I sure appreciate the good days, but it is hard to not be sad knowing that soon she will have to feel sick again. I have been watching her play and laugh and run around and I can't help but feel sad. I'm not a big crier, but my eyes seem to fill up pretty easily lately. By the time Brinley is through with treatment she will have spent more than half of her life on chemo. That is what made me so sad about what she said the other day, because this is her normal. It is normal to wake up every night and chew up a chemo pill. It is normal to chew up nasty steroids and just say "is this the yucky one? Can I have some water?" It is normal to have a big "bumpie" sticking out of her ribs that gets stuck every couple weeks. It is normal to go to the children's hospital where they all know her by name. This is her normal, and it shouldn't be for a 3 year old. I can't wait until January when I can go to Washington D.C. and represent all the kids in Utah who have this life as their normal.

Aside from MY stuff, Brinley is actually doing really well. Her counts rebounded nicely now that she is off the septra, so that must have been the culprit. She has been bumped up to 50% for one of her oral chemo's, 6MP, and we will see how her counts look tomorrow to see if she can go up to 50% with the methotrexate also. Her hair is getting so long it is in her eyes now, but she refuses to let me trim it. She said it will hurt, I think she remembers when we had to shave her head because her hair was falling out in clumps. Anyhow, whatever the reason, I told her she never had to cut her hair again if she didn't want to, I may regret that someday! So we'll try to manage the bangs until they are grown out. She is really looking good and healthy and we have heard that from quite a few people, so I know it's not just my imagination!

We are all so excited for Christmas. Those of you who know me know that I bake like a madwoman in December, I would bake something every day if I could. So we are cookie decorating and party planning and all kinds of fun stuff. I keep having flashbacks of last year at this time. Brinley was learning to walk all over again. I look at her now and she has come so far from where she was last year. She is running and jumping. Things are better. And next year....they will be better yet! And Brinley is still here with us, and we are so very grateful for that and try not to take one day for granted.

Please say a prayer for Brinley. Tomorrow is an LP and I am more nervous than normal for some reason. I have a restless feeling, maybe because the last LP she had she was so sick. Pray that all is well in her spinal fluid, and that those cancer cells continue to stay away. I don't like feeling this nervous and could use some prayers too.

Sorry for the lack of update for so long, Brinley really is feeling well, and I, well, I'm feeling weary but I'll get through it and be back to my lovely fun self soon enough! Hooray for the forgiving family that I have! Thanks for visiting and listening to my ramblings and I hope you are having a wonderful holiday season so far!!!

Happy Thanksgiving! I am thankful for:

-How well Brinley's treatment is working
-A family that loves me even though I can be less than pleasant at times
-The knowledge of a Heavenly Father who loves and KNOWS me
-Parents who raised me in a loving home and think I'm pretty darned cool - someone has to!
-Each one of my kids, every day that they are alive and breathing and with me
-Laughter. I love to laugh
-Time passing - last year we were in much more difficult place
-Mylee joining our family - I know she was hand picked for us to bring our family joy, you can't look at her without smiling
-True friends
-Jesus Christ
-My husband to share my life with
-Good people. I LOVE good, kind people
-Everyone reading this blog, I can feel your love and support
-Food & shelter, oh how we take those two things for granted!

We have so much to be thankful for, I'll stop there because I am so stuffed all I want to do is go plop down on the couch! Hope you Thanksgiving was as lovely as ours!

Things are better now, we made it through another steroid pulse. Whew. Twelve more to go!!!

We shouldn't have to go up to clinic until after Thanksgiving so long as no issues arise. Brinley is well known at clinic for "issues", so much so that when we were going up there last time she said "I think the doctor will say, 'what are you doing back here again!'" It cracked me up, because that's exactly what he said.

This round of chemo wasn't much worse than the others, except emotionally. Brinley is getting to the age where she can express her feelings better now that she is a year older than she was at diagnosis. So when we were at clinic last week to get her pentamidine, she said some things that absolutely broke my heart. For some reason, she has been really going with the puppy thing, and it seemed this month like she was expressing herself through pretending to be a puppy. So every feeling she had was the "puppy" is feeling this or that. The puppy's tummy hurt, or the puppy is tired. So right before her port access she said "mommy, this puppy is scared." That was the first time she has every told me she was scared. It dawned on me that she feels that every single time she has to get her port accessed, she could just never express it. All of these things that happen to her little body are so invasive, and they make her scared.

After the pentamidine infusion, she had to go get her flu shot. She asked if we could go home, and I told her we had to go downstairs and get a shot first. This was our conversation:

Me: We have to go downstairs for a shot then we can go home.

Brinley: (Face goes into cry mode) Noooooooo! (Face changes back to normal immediately) For who?

Me: For you.

Brinley: (Face goes back into cry mode) Noooooooo! (Tears start coming out. Tears stop, face quickly goes back to normal again) For you?

Me: No Brinley, for you.

Brinley: Noooooooo! (continues to cry all the way downstairs, gets shot, is crying all the way out of the hospital) Mommy, (through sobs) can you be Brinley?

What do I SAY to that???? Someday she will read this, so I will say this. I wish with all my heart and soul I could be Brinley and it could be my body used as a pin cushion and absorbing chemo and being scared for every procedure. Oh, if I could just jump in front of this moving bus for her, I wouldn't even blink an eye.

Steroid week is always so hard. However, this week I decided to do something different. I have been completely focused on making things happy around here. I have made sure to spend a few minutes each morning praying and reading the scriptures so I remember what this life is all about. Then I turn on some hymns all day. Literally. All day. I feel so in tune with the Lord and it has had such a calming affect. It has helped ME tremendously. I have avoided talking on the phone and other distractions, like housecleaning (besides the necessities). I've actually been able to get more done than usual because I am actually balancing myself. I have just felt such a peace this time. I am hoping that the rest of the steroid pulse will continue this way. Knock on wood.

Brinley is still sick though. I think the prevacid helps a bit because in the morning she is pretty playful. But by afternoon she just wants to be carried everywhere. I can't leave her sight. David came home from work late the other day to find her in the baby carrier on my chest so that I could cook dinner. Needless to say my back is killing me :)

Her stomach is back to talking again. The quote of the week from her stomach is definitely this one: (don't forget the high pitched voice) "My tummy said 'I want to poop in these panties'. I told him no, we aren't allowed to poop in panties. Only in diapers." She is so funny. She has also been playing puppy all day, but her puppy voice is even higher pitched than her tummy, almost past the threshold of me being able to hear it, it's so high and squeaky. It makes you cringe and laugh at the same time. "Puppy" has been sick today, she says.

We will head back to clinic tomorrow. Why so soon you ask? Because when Brinley was there last week and they gave her chemo early, we all forgot that she needs her new antibiotic and it dawned on me today it wasn't administered with her chemo. I called them and it can't wait until next month so we are going up there for an hour infusion. So frustrating, but oh well. At least I remembered. They put a flag on her chart so it doesn't get overlooked again.

Jade is feeling better finally, with a lingering cough, and thankfully no one else has caught the sickness the girls had last week.

Although I am doing so well this month, I have a bit of a heaviness in me. I guess I'm just tired of this drill. Brinley was asking to go to bed at 7 today. When I was tucking her in bed , she looked at me with what I call her "chemo eyes" (they get dark shadows) and said "I'm tired of being sick. And so is my tummy." I gave her a big hug and let a couple tears out, then I had to just tell her that she has to be sick sometimes to beat the cancer. I told her that someday, she wouldn't feel sick from cancer any more. That got a big smile. Then I told her they would take her port out, and she wouldn't have to get accessed any more. That actually got a laugh. How do you explain such a big thing to such a little girl.

It's those moments that happen within our walls, with no one else to witness it but us and God, that the world will never comprehend. This just shouldn't be, yet here we are. Living, hurting, learning, praying, laughing, crying and loving. All in the same breath.

We have had quite the week. Brinley was feeling better by Friday, so they started her back up on her oral chemo and we started her steroids yesterday. And they are definitely taking affect this morning. We managed to get the prevacid this month, (thank you, you know who you are!) and I am hoping that gives her some relief from feeling sick this month. Her counts were really good, so they are talking about increasing her dose of oral chemo, which would be a good thing. They want to check her again in 2 weeks to see if her counts are still good. I am really hoping they are.

Mylee managed to catch the virus, but it is such a mild version of it I would barely even say she was sick. I guess she's got a pretty tough immune system.

Jade, on the other hand, is still sick. Her fever went away for Friday and most of Saturday, so David and I decided to go on a date (we both needed it!). When we got home, Jade woke up with a fever again. So I will probably take her in tomorrow to see why she's not kicking this thing. Please pray for Jade, it has been one full week for her. She goes from feeling pretty good to feeling sick again and we are getting a bit worried. Of course, as I type this she is playing and tackling Daddy on the floor, so who knows. David and I are not sick, thank goodness, so we will just try to survive steroid week with an added sickie. I'll try to pop my head up for air sometime this week, I think it'll be a rough one.

The test was negative for swine flu for Brinley. We were all surprised with that because we were all pretty sure it was. Docs and nurses too.

They want to keep her on the tamiflu, and they decided instead of making me go back up to the hospital, they would just send out our home health nurse to draw another culture, check counts, and administer a dose of antibiotic. Brinley is pretty miserable, the minute the tylenol wears off, she starts burning up again and just cries.

So we don't know anything, really. I worry if it's swine flu, I worry if it's not. This can be one big fat worryfest sometimes. We are just trying to keep everything sanitized and hands washed. Seems impossible sometimes, but we do our best. Jade seems a bit better today.

Just wanted to petition a few prayers out there. Jade came home yesterday and was suddenly very sick with flu symptoms. It came on so fast. Brinley woke up this morning with a fever, up to 102, and so off to Primary hospital we went. She got the flu test and we will find out tomorrow. In the meantime, they gave her the IV chemo that was supposed to be Thursday so we don't have to go back. All other chemo is on hold until her fever is gone. We are not starting steroids yet until she is better. Thankfully, her counts are good, so we are not in-patient. They are pretty sure it is H1N1, so she is on the Tamiflu (holy $$$!). Our oncologist was nice enough to write a prescription for Jade too so I didn't have to take her in. I am trying not to worry, but how could I not? With Brinley in the "high risk" category, well, you know. And poor Jade is so sick.

Oh, how sweet is this - the tamiflu apparently is not very good. So of course, Brinley sucked it down with a sour look on her face, but did it quickly. Jade is not quite so used to downing yucky medicine, and so we were having a very hard time, lots of tears. Brinley came up to me with her big brown eyes and said "I'll take it for her." Brinley was willing to take the yucky medicine for her sister. I think that is the sweetest thing ever.

Anyhow, I'll update tomorrow, but please give my girls a few prayers. And pray that the rest of us will stay healthy, especially Mylee. Thanks!

Our Alex's Lemonade Stand was a huge success! Not only was it a success, it was an incredible experience for all of us. We each came home with some amazing stories and I can't wait to do it again next year! Our goal was to raise $500, and we ended up raising $1199.64! In just four hours, and with some online donations, we raised $1199.64!!! I couldn't believe it. It was such an empowering feeling, when I have had so many feelings of helplessness in all of this. I felt like we were truly fighting back, and it felt good.

I'd just like to share some of our experiences, so this post might be a bit long. I'll start with some pictures.

Brinley and Aunt Nancy at our stand. It started out chilly, but the day turned out to be absolutely beautiful, after a very cold week.

Our stand looked so great, thanks Danielle for doing the decorations!

We were able to set up at the upstairs entrance. Taylor and my sisters ran that stand. We had a lot of kids helping and they were all wonderful lemonade servers! A picture of all the kids would have been nice, I dropped the ball on that one.

We had a TON of traffic, it was a busy store. The store director was absolutely wonderful to us and everything just went perfectly.

I wasn't able to get everyone who helped in one picture, I regret not being able to do that, because we had so many wonderful people there helping us. I didn't ask one of them to help. They all approached me to help. We had more requests to help than we needed, I guess we'll have to go bigger next year! Thanks to everyone who participated, you are truly amazing, caring people.

Our little family!

Okay, are you ready for this? One of the highlights of the stand was being able to meet two people who actually DO the research for pediatric cancer! They have received grants from Alex's Lemonade Stand, and this doctor actually KNEW Alex! He used to live in Pennsylvania and was one of her doctors. He heard we were there and came asking to meet Brinley. She was in the bathroom, so he said he would wait. He had come to meet her and take a picture with her. So he waited, and when she came back he stooped down to talk to her. There was this man, this doctor, behind the scenes working every day to find a cure, stooped down face to face with one of the children he is fighting to save. Talk about a moment. What I would give for a picture of that moment. You could see without a doubt in the way he talked to my Brinley that it was more than a job for him. I wish I had taken a picture of the other lovely person who is doing research, who had the same passion in her eyes. I just didn't think of it in time. Heck, I wish I could have taken a picture of every single person who donated so you could see all of their faces. But here is a picture of Dr. Meeker with Brinley.

I want to share something I have been feeling, but I do have a purpose behind sharing this, so hang in there til the end please! While we were preparing this stand, several of us had talked about how disappointed we were. It seemed like people just didn't care. I guarantee you that many of the fliers we handed out went straight to the trash. Many of the businesses we asked for supply donations so we didn't have to pay for it ourselves said no. Some people, even friends of all of us involved, gave a polite smile when they were told about it and never thought about it again. I must admit I went into this with some disappointment in my heart.

Here's the good part. Now that the stand is over and after what I witnessed, I have a whole new outlook. It hasn't changed that some people just don't care. I get that. But some people do. I mean, really, truly DO care. And I got to meet them. If I could have, I would have swooped each one of them up, spun them around, and squished them until they begged me to let go. There's a picture for ya.

For example, I called Officemax to ask for copy donations, expecting the same turndown that I got from Office Depot, but instead the store manager said yes without batting an eyelash. He donated $110 in copies for our cause.

I sent in a request to the regional manager of Walgreens to donate some pictures for the stand, and he approved it the same day, his secretary telling me she wishes there was more they could do. I was able to print all the photos I needed.

The people involved with the stand and their family members donated money, paper products, and decoration supplies. The store director of Smith's Marketplace went above and beyond to help us. There was an outpouring of people at the stand who cared. Some of our friends and family drove anywhere from 30-90 minutes to buy a cup of lemonade. We met a childhood cancer survivor, people with someone in the family with childhood cancer, adult cancer survivors, doctors, nurses, and people who just plain old care about other people. All of us caring about the same cause. All of us working together to get cancer out of our lives. My point is that PEOPLE CARE! That was all I needed to see, that people care what my daughter is going through. People care about what other children are going through, in so many cases so much worse than what Brinley has experienced.

One of my favorite stories was at the stand upstairs. A man was lingering in the background for quite a while. Finally he said he was going out to his car to get his checkbook. He came back in and folded a check up to put in the donation bucket. He told my sister, Melanie, "it isn't much, but they have been sending me home from work every day, so I just don't have much to give." His check was for $1. He walked out to his car to get his checkbook so he could write a check for $1. I wonder what that dollar meant to him. I imagine it was a big sacrifice for him, enough for him to really contemplate donating it or not. I can tell you it meant the world to all of us involved. Incredible.

I absolutely cannot WAIT until next year when we can do it again. I just want to thank everyone who donated and helped. You mean the world to us, I would love to name you one by one but there are too many of you. You know who you are. I love you all and if my heart could explode from gratitude and love for you it would.

Last reminder! Please join us tomorrow as we hold our first annual Alex's Lemonade Stand in honor of Brinley. We will be selling lemonade and hot chocolate to help raise funds for childhood cancer research. ALL of the proceeds will go to Alex's Lemonade Stand, who in turn put the money into grants to fund important research to FIND A CURE! So let's do our part to cure childhood cancer, "one cup at a time". Hope to see you there!

For details, time & location go to Brinley's page. You can also donate online there if you can't make it. Hope to see you there!

I just have to slip in a picture of my angel baby, Mylee giving Daddy a kiss (well, kind of). She is so cuddly!! I seriously could eat her up, I can't get enough. Seven months already! Boooo hooooo!

Carving pumpkins, we are all making our best "eeeeeew" faces cleaning out "pumpkin brains".

I'm laughing because everyone is making fun of ME! My "eeeeeeww" face was a little on the dorky side, good thing David didn't snap the picture in time to catch it.