If you are looking for a good uplifting post today, stop reading right now, because you won't find it here. Today has been one of the bad days that we know we will have. I'm not going to pretend that every day we feel blessed and ready for this fight. Today, I want it to end. I want it to go away. I want cancer out of our lives. I want to throw in the towel, even though I know that isn't an option. Last night, Brinley was up at least every hour, if not more, so I think the fatigue has something to do with my feelings today. I'm just not up to being strong, and pressing forward. Everyone says that our family will become closer and stronger from this, but all I feel is a wedge between each member of our family right now. I feel like it's pushing up farther apart instead. I don't know how to bring it back, I can't pull anything out of my magic hat to make it better. I feel like every member of our family has to give 200%, but there is not 200% to give. So we are all falling short, and there is no reserve to pull from. I feel like we are being pushed to the max, and frankly, sometimes we just aren't making it. What's funny, is that for it being what it is, Brinley is actually doing really well. She hasn't had anything major go wrong, we haven't had to make any emergency trips to the hospital, etc. But she is still having poison going into her body, and no matter how "well" she does, that doesn't change. She feels sick all the time because of that. I really hate cancer. I hate how it snuck it's way into our family and is trying to tear us apart, and we are grasping to keep things together. Everyone is emotional and on edge and I am wondering when the "this will make the family stronger" will come in. The fact of the matter is that this is a terrible thing to go through. I'm not seeing the good in it today, and I don't want to go through it ANY MORE. I want it out of our lives and I want my happy family back.

Before everyone starts freaking out and thinking we are not making it, please know that tomorrow is a new day, and we have different feelings each day, and I think this is completely normal. We can't possibly be expected to have a good positive attitude every day, so just let us have this bad day and chalk it up to just that - a bad day. We'll start over tomorrow and things may be quite different. This is how I feel today, and I won't pretend this is a walk in the park that we are thankful for right now. This is hard. But I know it gets better, I have been doing a lot of reading from people who have already gone through it, and that helps a lot. The main message I get over and over is that this gets better. I just have to keep reminding myself of that. Maybe tomorrow I will be thankful. Maybe tomorrow I will see the silver lining. Maybe tomorrow I will wake up ready for the fight with my boxing gloves on. Let's hope so. I AM thankful, however, that David has enough insight to see when I am not making it, and he picks up the slack for me. He doesn't have to ask, he just knows, and I love him for giving an extra push in himself when he sees that I don't have anything left. I am looking forward to tomorrow, a new day. I am going to the Relief Society conference tonight, maybe something will uplift me, I sure as heck need it!!

Quick update today - Brinley is feeling pretty sick and is lying around. It may be because she's tired too, she was up quite a bit last night and has not napped at all today. We got the results from the hospital - there aren't any infections, so that is good news. We tried taking her to a soccer game last night, but since her ANC was so low (230) they said she had to wear a mask. We figured we'd try it to get some fresh air, but she was not thrilled about wearing the mask, so I gave up and went home around half time. She won't even attempt to walk or stand on her legs yet, the orthopedic specialist said that it might be a week or so before she's walking, but I'm wondering if her legs are hurting and it will take longer. I know sometimes the chemo can cause leg pain or numbness in the hands and feet, so I don't know when she'll be walking again. My mom got here today, so she is helping get my house back to order, and helping with running kids around this weekend. She'll be here until Monday. We are having a little girls night tonight and taking Taylor and Jade to the musical Seussical. That will be fun, everyone is looking forward to it. It will be good to get out for a little while, and this is one of our favorite musicals!

I also had my OB/GYN appointment today, it went fine. I lost a little weight, and the doc wanted to make sure I was eating, which I assured him I am eating just fine, just a little stressed. But everything else seemed totally fine. I'm at 14 weeks right now. I'll go in again next month, and possibly find out what we are having!

Okay, I know I've already written about this. But I just have to again. Have you ever seen the movie Gremlins? You know how they are so cute and cuddly during the day, then at night they turn into little monsters? We have one in our house. Right now we are just tired of being up all night feeding our monster, but every once in a while we can see past the sleep deprived frustration and find the humor in it. This is one of those moments. Last night, Brinley got up and ate the following (in one sitting): 2 1/2 peices of toast, a milkshake, yogurt, chips, pretzels, and milk. Mind you, we have stocked David's nightstand drawer with snacks in hopes we can lure her into just eating in our bed so we can sleep through it all, but when the child wants toast, she wants toast. The conversation sounds something like this:

Brinley cries in her bed.
David gets up and brings her in our bed.

Brinley: Eat, daddy, eat!

David: Okay, do you want some fishie crackers?

Brinley: Toast! (pointing to the door)

David: Daddy has some pretzels here in my drawer. Do you want one?

Brinley: (she has already said it once calmly, and will not be doing it again!) TOAST, DADDY, TOAST! (head tips back in a dramatic fashion and face scrunches up as if in severe pain) TOAST, DADDY TOAST!

David gets up to get toast. She is crying the whole time waiting for the toast to pop up. She devours the whole toast and wants more. She continues to make requests until her stomach is probably about to explode. She goes back to bed and wakes up in the morning as Brinley again. We probably will not see the steroid monster until the next night (although once in a while she surfaces during the day).

Tonight she woke up at 11 already and had some toast and milk. We'll see how long it lasts......I'm on 11-3 shift. So I'll be on monster duty til 3, then it will be daddy's turn. My little monster. Gotta laugh!

Well, happy day, the cast is off!! Ahhhhhh, this should make things much easier. Now we just have to wait for her to get the muscles toned enough to walk again, it might take a week or so. She was a little nervous getting it cut off, but now she keeps pointing to her leg saying "off!" I bet it feels good to not have that big, bulky thing on any more. On our way out of the hospital, we stopped by the clinic to see if they would look at her central line. It was looking red around the tube, and I was worried she was getting an infection on it. They looked at it for us and decided they better take a culture to make sure there isn't an infection. Apparently infection in one of the main causes of death of patients, since their bodies can't fight it off real well, and with her ANC so low, I am really nervous all the time. So they will call us when the culture results come back, and if it is infected they will get her going on an antibiotic right away. They said it's not a huge deal if it's just on the outside of her line, but if it gets to the inside of the line, it can be problematic and difficult to clear up. That put us at the hospital all morning, poor David is missing way too much work (I guess I should say poor David's boss instead) so hopefully nothing else will come up. He feels really bad when he misses work.

I really should be cleaning since I have a minute, but it's so hard to find the time to write, I just wanted to take advantage of it, so I will turn a blind eye to the house for a minute. I've been thinking a lot lately about.......you guessed it ......why? WHY? WHY? For ME to learn something? Why can't I just suffer then? Why this way, through my child? Who is this trial for? Brinley? Us? Here's what I came up with. I don't know. And it doesn't matter right now. I remember thinking in the hospital when Brinley was enduring so much pain, that I wanted to take it away from her so badly (and still do). I wanted to stop them from doing any more to my poor baby girl. I'm her mother, I'm responsible for protecting her. That comes naturally. Which brings me to my next point, I can see the big picture that she is not able to see or understand. I can see that if I took away all the pain she was going through, more pain was to come and she would be worse off than what she was then. The only way I CAN protect her in this situation, is to allow her to suffer through it. She, of course, doesn't understand that, but I knew that if that pain was taken away, she would not live. My heart aches for her pain, but she must endure it to survive. What I CAN do for her is stay by her side, hold her in my arms, comfort her, whisper to her that I love her and that she will be okay. I guess our trials in life, the things we are asked to endure, are kind of the same thing. We don't always get to see the big picture like Heavenly Father does, we just know that He knows more than we do and that the things we have to endure will be for our good. I DO know that he loves me and only gives me what will somehow make me better. And I know that He loves Brinley too. I also know that when we are in pain, His heart aches for us, just like mine aches for Brinley. He is our parent. Even though he can't take it away, He knows we must go through it, He is there to hold me, and comfort me, and tell me He loves me, and I have no doubt about that. I have felt it like never before these last few weeks. And I know He is doing that for Brinley too. So although I ask WHY? quite often, I know that it doesn't really matter. How I would love to see the big picture that He sees, so that I can understand, but then where would faith fit in? So we endure the best we can and pray that we will come out better for it. And be grateful that we have someone up there who loves us and can see everything we cannot see, and will do what is best for us in the long run. That's all we can do right now. Endure.

She was getting so many bald spots, not to mention the hair that was all over the house, and us!


Stop w/ that flashing already daddy!!


That shaving head thing was hard work.


"Don't bother me I'm eating" :)


I think I can think better now...


This gives new meaning to "she looks so much like her dad!"


Yes, that's a smile.


Well, we did it. She was looking so patchy last night we just decided to shave it. I had been on the verge of tears all day knowing it was coming and I hope I don't sound too shallow, but I DIDN'T WANT TO! I didn't want her hair to be gone, she had been BORN with a full head of hair and I had no idea what she would look like, plus it is a final sign that she has cancer. Every time I look at her I would be reminded about it. So I was emotional all day, but last night we took a deep breath and did it. She wasn't happy about being touched, but I don't think she minded her hair gone. She didn't seem to care. Jade however, couldn't believe what we were doing! She kept saying "Why are you doing that to her?" "She looks like a boy!" "Don't cut my hair like that!" She was more traumatized than Brinley! When all was said and done, we both looked at her and realized that she looked beautiful! Call it parent goggles if you want to, but she really looks adorable! Very different, but cute. We'll try to post a picture tonight, we are still trying to get a half-way happy picture, which is hard to capture these days. We are glad to get that part over with, it was one of those dreaded parts of this process, and now we just keep moving forward.

By the way, I wanted to say thanks for all the comments everyone is posting. We read every single comment and it really helps keep us going. I keep telling David I want some way to reply to each comment, I always want to say thanks, or something, so until we find a way to reply to people, a big thanks for all your words of encouragement and support. We love all of you, family, friends, and those who we have just met through the blog. Thanks!

Yesterday at church a man came up to me and asked me how Brinley was doing. I talked a little about her and how hard it is on her, the usual conversation, then he told me about his 12 year old nephew. He said that his nephew just went to Sea World with his family through the Make-A-Wish Foundation and told me about how much fun they had. I asked what he has, and he told me he has a tumor. I then asked if he was also going through chemotherapy like Brinley, and he said no, that this tumor was inoperable, and there was nothing they could do for him. I felt so small for thinking that what we are going through is so difficult. Here we have two people with cancer, one who will survive and one who has no hope of living through it. In the realm of people who have cancer, we are in the best place we could possibly be. I thought of all cancer victims as a big circle of people, and in that circle, we are the lucky ones. I thought about that boy and his family all day and when I rocked Brinley that night, I cried for them and all that they must be feeling. Him, a twelve year old boy, who should be thinking about sports, and skateboards, and girls (maybe?), instead he's thinking about how much longer he will be on this earth. And his parents and siblings, who's hearts must be aching with the reality of what is to come for them. I suddenly felt so incredibly grateful to be where we are in this circle of cancer, and ashamed for feeling frustrated with all that we have been asked to endure. I prayed for the boy whose name I don't know and whose face I have never seen, but who had been in my thoughts all day. Note to self: It could be much worse.

Kristin

As much as I would love to take credit for it. Kristin posted this under my account. That's why it says it was posted by David. :)
David

Oh.....my....goodness. There is a little monster in my house that I do not recognize. I mean, Brinley has always been a feisty one, (those of you who know her can attest to that), but these steroids are slowly turning her into some kind of species that I am in no way familiar with. They warned me about it, but the first couple of weeks were nothing compared to what we are seeing now. We thought we had just gotten it easy. Each day gets a little worse, and last night was insane! She woke up at around 11 and was eating everything in sight! She would yell for pretzels, then some milk, then some fishie crackers, then some chips, then a shake. This went on all night long! At around 2, David and I agreed to just do shifts, because she wouldn't go back in her bed, so I came down on the couch and he was supposed to wake me up at 4, but he "felt bad" so he let me sleep the rest of the night. So he was up with her pretty much all night feeding the steroid child.

To the clinic visit we went this morning. Things went okay, she screamed the whole time, though. She just wanted to go home. Her ANC was at 230, so we are quarantined this week (those are my words for it, they don't quite say it that way). No being around people for us. Next week she will be off the steroids, that was the good news. The doc said this medication is the biggest complaint of all the parents, so I am hoping if we can make it through this next week, we will make it just fine through the rest of it. And she will get a week off of the chemo next visit too. She'll get the lumbar puncture (spinal tap) and the bone marrow aspirate, then when we get the results from that, she'll be through with the induction phase. So this is the last week of induction! I'll post more later if I can, Brinley is screaming and I better go hold the poor girl, it was a rough day!

We were looking at some pictures of Brinley before all of this happened, and we realized that many of you who read the blog do not know our Brinley except for the girl we talk about now, who has leukemia and is sick. So we wanted to share a little peice of our Brinley, the one who can light up the room with her smile, the one who loves to dance, play, laugh, and be silly. The one we will have back when all of this is over. So this is Our Brinley.

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