Normal? What's that? We seem to have forgotten in the last 3 weeks how it feels to be normal. Well, today we got a little taste of it and it felt gooooood. I'm going to talk about the rest of the fam for a minute, don't worry, I'll get to Brinley later. This morning Taylor(our 11 year old) had a soccer game in Orem pretty early, so we decided just one of us should go (we tried taking Brin to a soccer game on Thursday and she was sick and just laid there the whole time, so we didn't want to overwhelm her in one week), so I got to do the game. It was so nice to get away from everything and just enjoy watching Taylor play soccer. Then my sister took me to get a pedicure, I don't even have to say how nice that was so refreshing to be out for a few hours, I got home so happy and rejuvenated. Then David took Taylor to Federation (a performance where she gets judged for piano) and they went out for a milkshake after. Everyone was happy today. Except Brinley, of course, but get this, we actually got a few smiles and laughs out of her! I know this sounds so simple, but the last 3 weeks seem to have been filled with worry, and tears, and stress, and frowns from all of us, so to have this day to feel a little happiness has felt so wonderful to us all. ooooh, and David and I even went on a date! Yes, a date, I did my make up and my hair, and we went out to dinner.

Okay, so here's the sad thing of it all. I thought about how nice it was to get away from living and breathing cancer all day long. It made me feel so happy to just feel like I had a piece of my normal life back, before all this happened. And every time I came home, Brinley still looked the same as I had left. It was like in my head, leaving made her seem better, I would forget about how sick she is. But forgetting about it doesn't make it go away, and when I got home, she was still sick. And SHE can't get away from it like we can. It felt wonderful to escape, and she can't do that. She has to have it every second of every day, and there is no way for her to have a few hours to feel normal. That made me so sad and guilty that I had been able to go and forget about things, when she has no escape. It doesn't seem fair. I would give anything to give her the feeling I had today, to get away from cancer and chemotherapy, and feeling yucky. I want to just take it from her for a few hours so that she can remember how it felt to be healthy and happy. People ask how WE are holding up, and our bodies are perfectly healthy. So much going on in such a little body. I was looking at some pictures of her yesterday, and it made me so happy to see her with a happy face, enjoying life, and so sad to not be able to see that face now. My Brinley.

Last night was interesting, Brinley woke up at midnight and was screaming "Shake! shake!" She didn't even give us a chance to get it for her before she started freaking out! It was a funny sight to see, I stumbled out of bed in a mad rush to make her a shake, and didn't have time to grab my glasses. For those of you who know me, I am legally blind without my glasses. So I ran downstairs to make her a shake before she woke up the whole house and fumbled around with my blind self in the kitchen. I finally got the shake to her and she was happy and went back to bed. These steroids have turned her into a maniac when she wants something. She's like a pregnant woman when she decides she wants it, she wants it NOW! And we are bumbling fools scrambling to get it to her so she will stop screaming. I should video tape it sometime, it's quite the sight. But she is eating great, she has even strayed from the mac & cheese!

Her hair is coming out by the handfuls now. It looks think, but it's not quite patchy yet, so we can't decide when to shave it. She still looks normal, but there is hair EVERYWHERE. I'm just not ready for it to go yet, so we'll see what it looks like tomorrow. But it comes out like crazy, if she just lays on your shoulder you'll have a shoulder full of her hair when she gets up. :(

This marks 2 breakthroughs: she's not eating mac and cheese, and she is feeding herself instead of sitting on one of our laps being fed! (she hasn't wanted to feed herself since we got home)

Yummy pot pie!

All that feeding herself stuff makes her tired!

A date for mom and dad! Had to get a picture of that!

Today has been okay so far, except for the fact that I didn't sleep at all last night. And I don't mean I woke up a few times during the night, I mean I could not calm down my head to sleep AT ALL! It was terrible. And Brinley started waking up at about 4, so our night was shot. (David actually had the same problem, so we got up looking like zombies!) So we've been lying around pretty much all day (Brinley and I). Thankfully, my Aunt Marilee came over yesterday and helped with cleaning and made us dinner last night (it was yummy!, thanks Aunt Marilee!) So the house isn't a TOTAL disaster (of course we do know how to mess things up quick).

Brinley has been hurting today. When she woke up at 4 or so, she was just screaming "ow! ow!" So David gave her some oxycodone and she finally went back to bed and slept. Then when she woke up again she did the same thing, she was crying hard and wouldn't tell me what hurt, she was just kicking and saying ow. I kind of feel like this third day after the chemo is when her jaw pain comes, and a couple times today she was holding her cheeks, but I can't tell if something else is hurting her.

I finally got some good news, my sweet hubby is going to come home early so I can take a nap and we can have a little family movie night tonight and make some caramel apples. (poor Taylor and Jade have been quite neglected lately) He doesn't want me falling asleep in the middle of the show. That was the best news I've heard all day! What a man!

Chemotherapy. Our best friend and our worst enemy. It will save our baby's life, and it will put her through hell. In clinic you see all kinds of patients. This week we saw a teenage girl in a wheelchair and she had the saddest look on her face. Our eyes met and she managed a weak smile, but my heart broke for her and what she is going through. Chemotherapy is awful on a grown man, and here is our two-year-old going through it. Cancer doesn't discriminate. It doesn't say, "Oh, I'll leave this little girl alone, she's too young to go through this." Or "This man has lived a good life, I'll pass him by." It doesn't care. Whoever it can get to, it gets to. And after so many, many years of trying to figure it out, we have come up with chemotherapy. Such a blessing to have a way to fight this disease, but so much pain and hurting to go through. I was reading an article that said that in 1962 the cure rate for leukemia was 4%. Four percent!! I imagined being in the hospital and them telling me my daughter has leukemia, but I changed one line in their diagnosis. Instead of hearing there is a 90% chance she will live, I heard she will have a 4% chance to live. I can't even imagine what that one little difference would make in this fight. That was only 40 years ago. We have come so very far from then and I am thankful to be in this situation now, with all the medical advances we have made with this disease. Because people cared. People donate money to research, people spend the time it takes to research, people participate in experimental studies, people dedicate their whole lives to this fight. And they have come so far because of it. And here we have chemotherapy. How I love it because it will safe MY daughter's life. It is so personal to me now. It directly affects me and my family and my sweet Brinley. And how I hate it because of what it is doing to her. Every day, 99% of my thoughts are about cancer and this treatment. All the medicine, all the side effects, all the sickness, all because they have found a treatment that can destroy this awful disease. And that is the price to pay for your life. And when I think of it that way, it is a small price to pay. But when I look at Brinley every day, and see how sad she always is and how weak she is and how different she is, I hate it. There are those extreme feelings again, gratitude mixed with anger mixed with love mixed with fear. This is like nothing I have ever experienced. I have learned so much personally and have seen so much that I would NEVER change our situation, yet we have to struggle to have those experiences that I am so thankful for. I don't even know if this is making any sense, but it makes perfect sense to me.

I don't have much to report on today, Brinley is feeling sick and grouchy and we have been watching TV all day so far :) One of those days. Her hair started falling out yesterday and today, so I expect in about a week or two it'll be so thin we'll probably just shave it. Of course she has tons of hair, so who knows how long it'll take to get super thin! I can't picture Brinley without hair. I guess I was kind of hoping it just wouldn't happen to her, denial, you know? I'm sure she'll be a cute bald kid. We ordered some cute cancer T-shirts for her. One says "Cancer messed with the wrong DIVA!" That screamed Brinley when I saw it, I had to get it.

I was wondering how much medication a little body can handle this morning when I was giving her her meds. She's on dexamethasone, septra, oxycodone, prevacid, and a laxative, not to mention the vincristine going in each week and cytarabine going into her spine. Yikes, that's a lot of stuff going into her! It's funny how when they first gave us all the sheets on the meds she would be taking, I was so overwhelmed and didn't think I would ever get it straight what each medication is for. Now I can recite each medication from memory when they ask me and how she's taking it and what it's for. I guess you learn when you have to! No wonder she always feels so yucky!

This is about the norm for Brin now - feeling yucky and wanting to be held.

Hearing a book from daddy at clinic today.

A family in our neighborhood gave a bag of gifts and she gets to open one each clinic day. A little something to brighten her day!

After a long day of clinic, walking around the neighborhood, and going to the store she is a tired girl.

I just thought this was such a funny sight, I had to take a picture. Taylor and her cousin Ashley have a recital on Saturday and have to practice together for a duet, however Ashley is sick and so this is how they had to practice today so we didn't risk getting Brinley sick.

Well, we just got home from our second clinic visit. It went so much better than the first. I have to write right away because I am feeling so great, and something may happen in an hour that will bring me down (you never know these days..)so I'll start with our clinic visit. Her numbers looked great, so she didn't need a transfusion. Her ANC was at 700 (again, that is how her immune system is working, a normal person's ANC is about 3000-5000), which is not great, but they gave us the OK to go a few places like the grocery store and Sacrament meeting (no nursery). So that was good news, we are feeling a little closed in lately! She gained back the 2 pounds she lost last week (these steroids are kicking in and she is one hungry kid!)The blood came right out this time from her central line, so no drama there, and she got her courage necklace today. Every time she has certain procedures, she gets another bead for her necklace. She already has a ton because of everything she has been through thus far! We will put it together tonight and take a picture, it's really a neat thing they do. She gets a bead for all the blood draws at the hospital, all the chemo visits, all the tests she has had to take, etc.

Considering she has cancer and is going through chemo and all those yucky side effects, we have been so fortunate so far. I know how much worse this could be, and she seems to be on the better side of it. We haven't had anything major go wrong thus far (knock on wood) and the treatment is working! What more could we ask for right now? We are in the situation we are in and there is nothing we can do about it, but boy have we had the best care and we couldn't ask for things to go better than they are. Our Brinley is kicking cancer's butt and we are so happy about it. (We've grown to really loathe cancer, so kicking it's butt feels pretty good.) My heart aches to have my old Brinley back, I want her smile and her laugh and her funny, silly personality,I want her to feel good and happy and not sick, but WE ARE WINNING! That makes me happy. So so happy.

We got some good news today! The bone marrow aspirate results came back and she has only 2% of leukemic cells left. That is great, she was at 70% when she was diagnosed! That means the chemo is doing it's job! So she is right where they expect her to be and things are going according to plan. So now she will have another bone marrow aspirate at the end of this phase (Induction) and she should definately be in remission. Yay! All these side affects this poor girl is going through, and we now we get to see the good side of that. So a couple more weeks of induction, then we move on to the next phase, and I think that phase drops the dexamethasone (the awful steroids!). That will be nice. A 2-year-old on steroids is quite the handful!

She's been feeling yucky today, of course, but we are learning how to handle it. It's still hard to see her so sick all the time, but I know it is temporary and someday she will feel better. So we will just endure, that news today gave me an extra burst of strength! My first day alone has been pretty good actually. Aunt Huenu left us with a clean house and some good meals, so we all feel rested and ready for the week!

We love you all and thanks for reading our blog! It has been so theraputic for me to be able to get my feeling down somewhere, I hope it doesn't get too depressing. I just decided that I would write what I was feeling, good or bad, and it has felt good to get my feelings and thoughts out. So thanks for listening! Love you guys!

The house is quite for a moment, so I will take advantage of it and write a little. We all stayed home from church today because last night Jade came down with a cold and fever (not good!!) and Taylor wasn't feeling great this morning. So we decided to stay home and rest. So far Brinley hasn't shown any signs of catching anything and we are trying to keep Jade away from her and everyone's hands washed. We're hoping that Brinley won't catch it.

I was thinking a couple days ago that I should probably talk to Jade (our 4-year-old) about Brinley's hair since it will be falling out in the next couple weeks. I didn't want her to freak out when her sister's hair started suddenly falling out. So I told her that Brinley is sick with cancer, and the medicine she has to take to get better would make her hair come out. But it was okay because it would grow back and she would get better. When Jade got sick last night she was sitting with me and she said "mommy, since I am sick does that mean my hair will have to fall out too?" It was so innocent and sweet and sad all at the same time. I explained that she doesn't have cancer like Brinley and only the medicine for cancer makes your hair fall out. I told her she only has a cold, and would be just fine. My little Jade.

Brinley ate her usual breakfast of mac & cheese, then Aunt Huenu made a nice big batch of homemade mac & cheese for the week. Much healthier! She seems to be hurting today, but we can't figure out where. It's almost like her whole body hurts, so we've been giving her the oxocodone. She's not feeling too good today. She wakes up several times every night, and I think it makes her so tired. She needs a good long chunk of sleep with no waking up. I figure she'll feel this way until Tuesday, I'm guessing. She goes in on Tuesday this week for her chemo. We are slowly getting to Mondays because of the doctor that is only there on Mondays. She was the doc and the hospital that we talked to the most and we feel very comfortable with her.