I've been thinking about this experience and have been doing a lot of self-evaluation. What is okay to feel? Is it okay to feel angry sometimes? Is it okay to feel afraid? Is it normal to not just be okay with all of this? Is it wrong to look at a 2-year-old and wish that mine was normal too, and could do normal things, as simple as walking? Or going into a grocery store without a mask on? What feelings show a lack of faith on my part? Sometimes I want to say "listen, I hate this, and I'm gonna say it, and it doesn't mean I don't have a testimony or that I lack faith in God's plan, or any of that, it just means that this is DANG HARD, and I don't like it one bit!" (Can you picture me stomping my foot with that one too??) I mean, is that okay?? I hate to admit this for fear of sounding totally weak, but I'm not one to take on hard things just to prove to myself or anyone else I can do hard things. I don't have a magnet on my fridge that says "I Can Do Hard Things!" (sorry Mom, I DO love your magnet) I like life to be pleasant. I will absolutely stick to my standards, and that can be hard, and I do the things that I KNOW are important, and they can be hard. I have always accepted callings in the church, some have been pretty scary and hard. But I guess what I'm saying is I'm not one to lobby for PTA president, or RS President, or any of that hard stuff. I like things nice and simple. Ahhhhhh. The good life.

Okay, now that I've made myself out to be totally pathetic, I'll move on. I told my Sunday school class on Sunday (16-17 year old kids) that had I NOT built a testimony on faith in God and His plan, and a made a solid foundation of faith during the "easy" time of my life (which I consider to be everything up to this point, I've had struggles, but they look quite easy now...lol) I would have absolutely crumbled. Although I will admit this is so very difficult, FAITH is what is carrying me through. I have had moments where I just want to get in my bed so that I can just cry until my head hurts and nobody will see me, and feel like they have to hug me or comfort me. I have had moments where I have thought this was absolutely unbearable to watch happen to my daughter, and my heart has broken into a million pieces, I mean my heart has literally HURT. I have felt pain like I have never felt in my life. Yet, I have NEVER, NEVER, NEVER lacked faith in a LOVING Heavenly Father who KNOWS what I am feeling, and who knows what I need to do and what I need to go through. So while I don't seek out hard things, they will no doubt come my way, and I will get through them through faith in the Lord, who suffered unbearable pain so that he could understand mine and comfort me through my pain that pales in comparison. And while at times, not ALL the time, but sometimes, my prayers may sound like a child unwillingly doing their chores (I don't wanna do it!!!), I know without a doubt that we will come through this better, and stronger, and even if things don't go the way I would like them to, even if I do pray for things to go MY way, I have no doubt in my mind that God will do what is best for us, no matter how painful it may be at the time, and I completely put my faith in Him, 100%. There you have it. Getting through this, it's all about faith.

Now that I've talked all about ME and MY feelings, (me,me,me,me,me,me, lol) I'll give a quick update on Brinley. She was a happy girl today, her personality is really shining through. I'm so proud of how tough she is being, and how dang cute she is chubby and bald. She's eating well, and her rash is pretty much GONE! Yay! She keeps pointing to it and smiling, saying "owies, gone, owies, gone, medicine!" Yep, medicine is her new best friend, she is surrounded by it. She's doing pretty well with the 6MP, although I think it makes her nauseous. She has been dry heaving a lot, but has not thrown up, so we'll see what happens there. Taylor and Jade are both getting sore throats in Phoenix, bad news for us. They come back tomorrow and we will have to be psycho hand washers until they are feeling better. Brinley and I have been able to spend some time with some family, my Aunt Nancy and my sis Melanie, and that's helped pass the time while we are stuck inside. She's sleeping all night for the most part, and things are going quite well. I think aside from all the sedation for the spinal taps (we'll have one Monday) this will be a decent phase. Pray that it stays this way!

We've had some progress today and yesterday! Brinley has started standing up. She has to have me close by so she can hold on to me (I think it makes her feel secure) and she will use both legs to walk if I'm supporting her under her arms. Before, she wouldn't even ATTEMPT it. So I am feeling hopeful she will gradually build up some muscles and start walking again. That will be nice.

We're preparing for David, Tay, and Jade's Phoenix trip this morning. This will be the first soccer tournament I miss and I am feeling quite sad about it. The mom in me is sad to have to miss Taylor playing, and the Hanks in me is bummed to miss any fun! So I'm trying to stay positive and think about how nice it will be to just have Brinley and I spend some time together alone, but the jealousy bug keeps sneaking into my head. Oh well, hopefully we will be able to take a little trip together soon.

The last couple of days have been pretty quiet. So far, Brinley is still fairly happy, I wasn't sure if this round of the vincristine was going to make her sick or not, but she's been smiling and laughing, so we are holding our breath. Her appetite has decreased quite a bit, not sure why, probably the chemo. Her rash is starting to scab over and heal, it's looking better.

David is going out of town to Phoenix this weekend for a soccer tournament with Taylor and Jade, so it'll be just me and Brinley. Hopefully we will not have any ER trips, and we can just have a nice quiet time. I'll be turning our play room into our guest room because on monday, my sister Alissa is coming to live with us! She just got off a mission in California, and is going to stay with us and she will be able to help out with Brinley. We are all sooooo excited for it. We've missed her!!!

We are feeling quite stir crazy, but I'm nervous to take Brinley anywhere. Her ANC was 500 on Monday, and I know this new drug, 6MP can lower your counts, and each kid takes it differently. So I really have no idea what is happening with her counts, so I'm reluctant to take any risks. We'll probably lay low until Monday when we see where her numbers are. So we went on a walk today when we were feeling like we were about to go crazy. That was nice. OH, how I would love to go back to our normal life, when I could run to the store, or take the kids to the pet store when they are bored, or go to McDonalds play place. I miss those days and I want them back. Yet here we are, we'll make it work.

Well, we started consolidation today. This is supposed to be one of the easiest phases (Easy is actually not a word I would associate with any of this, but you know what I mean). Unfortunately, it didn't go so great at clinic today. First of all, this morning, her rash was literally oozing through her dressing all over, it looked so yucky. The dressing had stayed on overnight, thankfully, but I could tell it was quite painful. We addressed it first thing and they said when she went to the RTU and was sedated, they would remove the dressing and take a look at it and decide what to do.

They decided to start treatment with yesterday's ANC of 700, so before we got today's blood tests back, they sent us down to the RTU to get the lumbar puncture (chemo in her spine). That was a nightmare. It started out as usual, with David holding her while the anesthesiologist put her out. We went and got something to eat, and were back in time for her to wake up. She woke up her usual way, screaming and flailing and wanting to leave right away. However, the dressing they decided to put on was the smallest one, they use it for babies (the logic being let as much skin exposed to the air to start to heal as quickly as possible). After about 2 minutes of crying and flailing, the dressing started to fall right off. The nurse decided that there was no way that dressing would work, if a little movement makes it fall off. So they were scrambling for about 10 minutes trying to figure out what dressing to put on her, trying to keep her from pulling out her line with her hysteria. Not fun. So the anesthesiologist decided it would be best to put her back out for the dressing change again, since she was so out of control. While she was doing so, she mentioned to us that Brinley has a VERY high tolerance for the anesthetic, and she has to give her quite a bit to get her totally out. Not something you want to hear, but okay. So she hurried and put her out, and normally they have us leave the room until she wakes up again. Not this time. So a minute or so after she was out, the nurse looked at the machines and went into a panic. I mean, she was scared. Apparently Brin had completely stopped breathing. So we watched her fumble around trying to get the oxygen mask to put on her face. That didn't help, so she had to get a ball on the end of it blow the oxygen for her. In the meantime Brinley had started to turn blue. I think it was the most terrifying 30 seconds of my life. Finally after a minute or so of the nurse breathing for her, the anesthesiologist said to have her try to breathe on her own, which she did, and was fine after that. I even think if the nurse had not completely panicked in the first place, I would have barely even noticed, but the nurse was fumbling around with the oxygen, and everything she said had panic in her voice. At one point she said to the anesthesiologist, "She did it AGAIN!" So it happened the first time too. The anesthesiologist was perfectly calm and told the nurse "I know, that is why we have all of this equipment!" I think she was annoyed that the nurse had been so panicky in front of us and she apologized profusely afterwards. She said she decided to sedate her again because she has a daughter the same age and couldn't stand seeing Brinley in pain when she knew she could do something about it. We appreciated that. She also said that she was very sorry that she left us in there, she said she should have had us wait outside like usual and that there was nothing we should worry about. But it was an awful moment for us, I could just picture her dying right there on the table with us being helpless to do anything. I can only imagine what the heart rate monitors would have said for David and I! I wish the nurse would have been more calm, I will be terrified every time we have to do this now, and we still have many more sedation's to go. Needless to say, I now know why they leave parents OUTSIDE the RTU during these procedures. We are on a need to know basis.

As for the dressing, they found a different small dressing that sticks better, and most of the rash is exposed, so we can put a cream on it. They also said we can skip the alcohol step for dressing changes and just use the other cleaner on it, which still stings, but not like alcohol. It may take a little longer than normal to heal because of her low white blood cells, they said hopefully in a couple days it will be looking better. Let's hope so, it looks so very painful. And itchy!

After that, we went back up to clinic for the chemo they put into her central line, and she cried up until we left the clinic. We felt bad for the others in the infusion room getting their chemo and having to listen to her scream, but hey, what can you do? She was having a bad day! Before we left we found out that her ANC had actually dropped overnight to 500, which was quite a surprise for all of us. But they said she was still okay to go ahead with Consolidation. So this phase will go like this:

Today was the only day she will get the vincristine (chemo in her line). She will take an oral chemo medication every day called 6MP. Side effects: low blood counts, mild nausea, mouth sores, abnormal liver function tests. Once a week for the next 2 weeks she will get the chemo in her spine, (more sedation), and then she will have a week with no back poke. This phase is about 1 month long.

I guess you could say today was a slap in the face, out of our dream world and back to the wonderful world of cancer. I wish I could do it for her.

Having a dance with Daddy.

She likes to pretend to give herself "medicine" through her line.  Don't worry, it's an empty syringe that only had saline, and she doesn't know how to hook it up.....
Serious stuff..."quiet Mom.....I'm concentrating."
Brinley is becoming a pro at playing doctor.

The in-home nurse came today to draw blood, and she had a hard time getting anything (we have this problem quite often) so we had to get a medicine that will clear out Brinley's central line. So the nurse ordered it (cathflo it's called) and came back later and we had a successful blood draw. yay. So her ANC came back at 700. She has to be at 750 to start chemo tomorrow. Since it is soooo close we are still going to clinic tomorrow hoping it will boost overnight to where she needs to be. We are anxious to get going on the next phase, so hopefully we will be able to.

Another reason we are keeping our appointment tomorrow is we are having some problems with her dressing for her central line. She got a major rash under her dressing and it is itching her like crazy and we are not sure what to do about it. She has itched it so bad at night, that the whole dressing has come off 2 nights in a row - not good. They are very particular about infections, and the inside of the dressing has to be sterile at ALL times, the dressing changing process is very sterile and we take that very seriously. So you can imagine our panic when she woke up and it was completely off with her line just dangling there ready to be pulled out by any wrong move. We put a new one on and called the nurse, she said to hold off until she could look at it today. Last night the same thing happened, and by the time she got here today, parts of the rash had started to ooze a little, and the dressing was coming off AGAIN because of the moisture. The nurse calmed us down and reassured us that she has seen much worse, and that it could wait until tomorrow when they could look at it at clinic. She put a different type of dressing on, one that has a little padding on, that will hopefully ease some of her itching, and it also sticks much better. So we will check it before we go to bed and see if she's managed to get that one coming off too. We can't put anything on it because then the dressing won't stick to it, so she has to be absolutely miserable not being able to get to it to itch it. Hopefully they will have a magic solution at clinic. We've taught her to give it a pat to itch it instead of rubbing it, but the minute we turn our backs, yep, she's rubbing it like crazy. Also, all the dressing changes have been miserable for her, you have to swab the whole area with pure alcohol 3 times, then scrub it with another solution. I know it burns like crazy because she screams, but it is something we HAVE to do everytime she itches it off. Poor girl.

Other than that - all is well!