The Bug

Mike and I both had a cold last week. It is amazing how bad a stupid cold can make you feel. It only lasted a few days, but all I wanted to do was sleep the whole time. Of course I couldn't; I still did everything as normal, I went to gym class with Kelsey, got to work in Braden's class and had lots of soccer practices. But, after I felt better, it made me wonder how Brooklyn really feels every day. She is usually always in a good mood and ready for anything. Now, that isn't to say that she doesn't get feisty or stubborn with the rest of them, but for what she's going through, she always acts like everything is fine. Whenever I ask her how she's feeling, she will say, "I'm teeling tine." Every once in a while, she will say, "I'm not teeling great Mom" but those times are rare. So I wonder, does she really feel bad every day, but she still goes on about her way like I did when I had a cold? Or, does she really feel okay? I can't imagine all the drugs that we are pumping into her right now would make her feel normal, although, it's been so long since she knew what normal feels like, that maybe she has a "new" normal. My parents are out of town this week, so we brought all the kids with us to church on Sunday. It was the first time Brooklyn has been able to go to church since she was diagnosed back in January. We didn't want her to go into childcare, just to try to prevent germs from other little 3 year olds, so we brought her into church with us. She was incredibly quiet during the service and at the end of church while the band was playing, Mike was holding her on the chair in front of her and she was just listening very intently, trying to sing along and even held her hand up for awhile. It was incredible to see such a little girl feeling so moved and so close to God. Mike and I are not really "hand raisers" and there aren't a ton of people at our church that are, so to see her do it was so sweet. I know she has a special connection with God and He is holding her through this tough time in her life. Monday morning, Kayla woke up sick. She got all ready for school and then went and threw up. So, it was quite a juggling act to keep her home and keep the other kids away from her. I really didn't want anybody else to get sick so I wouldn't let the girls hang out with her during the day. Brooklyn was so upset about it. She is so used to playing with Kayla when she is home that she didn't understand why she couldn't. She kept pouting and saying, "Everybody is hurting my teelings." Kayla stayed home again today, although she was feeling much better and so far no one else has gotten sick. Brooklyn had a spinal tap this morning. It is such a treat to walk in to the surgery center with her because all the nurses just love her! We walk in and everyone says, Hiiii Brooklyn! and gives her high-5's and smiles. She did a great job once again and woke up happy after her anesthesia wore off. We got home and hung out with the other kids the rest of the afternoon. Watching her go through so much for so long really puts our little colds or flu bugs into perspective. The best part is that we're all getting better.

Time Flies

I am not big into cliches. I don't go around saying "live and learn" or "life's short" but I do have to say... "time flies"! Braden turned 8 on Monday and I can't believe that he is so old already! It has hit me lately when I've gone in to check in on him at night and he is getting so tall he almost reaches both ends of his bed! It is so much fun watching all of our kids get bigger. Last week when we went to preschool Tuesday morning, as soon as we got there, Brooklyn threw up in the parking lot. I wasn't sure what we should do, so I asked her if she wanted to go back home and she said, "No, I miss my 'tends'. I want to go to 'cool and play with them." I was staying at church for Mom's group that morning anyway, so I told her teachers that if she didn't seem to feel good, they could come get me. I went to check on her halfway through the morning and she was playing outside, happy as could be, but once she saw me, she wanted to hang out with me the rest of the time, so we did. Thursday she was much better and didn't get sick and was happy the whole morning. That morning was also the first time I took Kelsey to "My Gym." I have taken all the kids there when they were little and I love it. I can't believe I'm taking Kelsey now! Thursday morning is the only time that it is just the two of us hanging out together for a couple hours so I am so glad that we are getting to do something fun together. And she is such a little monkey that she just loves climbing and playing there! Saturday we had soccer games for both Braden and Kayla and then had Braden's birthday party at a Lazer Tag place. It was so much fun playing with the kids and celebrating the day together. Brooklyn even played with us. She wore the big vest that was almost bigger than she was for about half the game and then took it off because it was so heavy, but she had such a fun time. We celebrated again Sunday with my family and had another fun day. Monday we met with the oncologist. They congratulated us that we are now in the "maintenance phase" of Brooklyn's treatment. That basically means that we do the same thing over and over for the next year and a half. It was a little overwhelming to have the nurse tell us that this would be our schedule until April of 2013. I think it has been kind of a good thing to meet with the doctor every month or so to get our new schedule for treatment because it has broken up all appointments and medicines into smaller time frames so it doesn't seem too daunting. To hear that we have to do the same treatment for the next year and a half, was a lot to take in. And I also think our idea of "maintenance" was that it would be a lot easier, but it's not. She will only have to have a spinal tap once every three months, so that is good, and we will only have to go in for chemo once a month, so that is good too, but there is a lot more that we have to do at home. She had to go to the infusion room yesterday after school for chemo and then last night we started all the medication at home. Five days every month she has to take steroids again, once a week she has to take 5 pills of one type of chemo and then every night for the next year and a half she has to take another chemo pill. And she still has to take her antibiotic 3 days a week. I know that it will soon be routine, and hopefully she will learn to take them as well as she does her antibiotic every weekend, but it is a new battle once again. We crush the pills and have been mixing them with gatorade to mask the taste as much as possible. Last night she threw a fit taking the first syringe but then admitted that it wasn't that bad and she just liked to complain. :) She is a crack up sometimes. She did better today with taking them, but it still stinks that she has to do so much. They are trying to regulate her ANC level to be between 500 and 1500. It has been a lot higher the last few months which is great because it is showing that she is able to fight off infection and has been remaining pretty healthy. Now though, they want to give her as much chemo as her body can handle to ensure that the leukemia doesn't come back, but not let her immune system dip too low so that she is at risk for fighting off infections. It is crazy how much the doctors know about treating these kids. I am so appreciative of all the research that has been done to help find a cure for this cancer, and although it seems like a long haul, I know that "time flies" and we'll be through it in no time.

Cute Little Toes

Tuesday morning Brooklyn went to preschool again. I was very interested to see how she would do since the week before her teachers said she got tired before the day was over. They said she was great all morning though so I was so happy. It made me feel better about her going to school and not worry as much that it is too much for her to handle. When I picked her up, we went straight down to the infusion room to get her blood drawn. Since the day before was Labor Day, our home nurse hadn't come out so we had to go to the infusion room. They said it would take about an hour to get the results back so we went over to Jamba Juice to have some lunch. It was a pretty day so we found a table to sit at outside and enjoyed hanging out together. She was so cute - she said, "This is my best day eder Mom." How many people can say it's their best day ever when they have to get blood drawn and then go in for chemo? She continues to amaze me. It is so funny because Mike and I have said lately that it is easy for us to forget that she's sick because she is doing so well and usually feels so good. She is spunky and fights with her brother and sisters, but is also the sweetest little girl you've ever met. It is weird when I glance at a picture of her hanging in our hallway with her hair long because I am so used to her not having any hair now. She really looks great without hair! But I am reminded regularly that she is sick since we are living in a new neighborhood and the kids are at a new school. So many families at our old school knew us and knew that Brookie got Leukemia in January and would always ask how she was doing when I would pick up Braden. It is weird to be at a new school and have her with me all the time because I know people look at her and wonder why she is bald or what is wrong with her and it's not like I just walk around with a sign saying "she has leukemia." The people that I have told have all been very nice and concerned for how she is doing with her treatment, but it is always a little strange to know when the right time is to explain it. I think we are so used to living with our new schedule and treatment and doctor's appointments, that we don't stop to think - oh my gosh, she has leukemia. It is really sad if you think about it. You never want anything bad to happen to your children and you never think your child will get cancer, so it is pretty shocking that it has all happened so quickly. I think having a schedule drawn out for us and having good doctors and nurses has helped us get through these first few months, but I also know that our strength comes from God. He lifts us up on those days that seem extra hard and carries us through til we are okay again. Tuesday turned out to be a long one for us. After our lunch, we went back to the infusion room for her chemo, but had to wait awhile for it to come over from the pharmacy so we didn't leave to go home until 5:00. The next day, we ran some errands, went to a doctor's appointment for Kelsey, and then had soccer practice for both Kayla and Braden and I could tell that Brookie was tired. The next morning she was supposed to go to preschool, but as soon as she got up and came downstairs, she threw up, so she didn't go. She was so sweet because at about 11:00, she said, "otay mom, I want to go to 'tool' now." She has been singing 'Jesus Loves Me' since she started school and it is so cute because she doesn't know all of the lines yet so when she was singing it in the car the other day she sang, "Jesus loves me in my toe, tor the Bible tells me so." :) I think I might start singing it that way now! We had a pretty mellow weekend. My mom stayed with us because Mike and my dad both went on the men's retreat with our church. The kids love having GaGa here and it was fun for us to get to hang out for a couple days together! The week ahead shouldn't be too busy, so hopefully Brooklyn will feel good all week, all the way from her head down to her toes.

Get Outta Town

It has been crazy busy around here once again. Brooklyn is still enjoying school and is actually mad that she doesn't get to go every day. She has only gone four times, but she loves it! Although last week, her teachers said that she got tired towards the end of the day and wanted to rest. It is hard for me to hear that because it makes me wonder if school is too much for her right now, or if she is just playing it up so that she gets to spend some special time reading books with our wonderful preschool director. She rarely sits down when she's at home playing with her brother and sisters, and she is only at school for 3 hours. But at the same time, I know it is still much different being in an environment that she hasn't been in before and being around more kids might be putting more pressure on her and tiring her out more than usual. Last Friday I worked in Kayla's class in the morning, which was great. It was so much fun to see her interacting with the other kids and to start to get to know her teacher and her new friends. My mom met me at school with Brooklyn about 10:45 and she and I went down to the infusion room to get her port accessed before her spinal tap at 1:00. It always stinks when she gets a Friday surgery day because she can't eat all morning. So basically she didn't eat since dinner the night before and couldn't even drink after 9:00am. I felt bad because I didn't know how she would handle not eating and I just had to leave her with my mom so I could work in Kayla's class! As usual, Brooklyn did amazingly well. She was in good spirits, as usual, as we went over to the surgery center and even though they were running behind schedule, she was great and didn't complain that she couldn't eat. We played with the heart monitor stickers and read books while we waited. After the surgery, we had some snacks and then went back over to the infusion room for chemo. She seemed to feel okay after her chemo and didn't ever get sick at home this last week. Braden and Kayla have been busy with school and homework and soccer, but really doing great with all of it. Kelsey is as funny as ever. She is starting to learn some more words but is still at great at screaming when she wants some attention. :) This weekend we got to go up to Tahoe for the wedding of our good friends Mason and Jen. My parents came with us to help watch the kids while we were at the wedding events, and it was such a great weekend. It was so much fun to just get out of town and have a mini-vacation. We really haven't been able to go to far out of town as a family since Brooklyn was diagnosed because we have had to be here for treatment so often and also because we don't want to be too far away from the hospital and our doctors in case she gets sick. The kids loved Tahoe, we went to the beach every day and built sand castles with my dad, and the weather was great. They painted at the house with my mom and dad and one day even got their faces painted. They always think it's fun to stay somewhere new. Last night there were fireworks over the lake and we got to watch them with the wonderful Hibbard family. It was beautiful & the kids loved it. Today on our way home we stopped at Apple Hill and the kids got to pick apples off the trees in an orchard. Of course, since it was the last thing we did, I think they all said it was their favorite part of the weekend. It is nice that they are so easily entertained. :) Brooklyn has school again tomorrow and then I am taking her straight to the infusion room. She didn't have her blood checked today since it was a holiday, so we will have to go in to have her blood counts read and then wait for the results and then she'll get chemo, so it will be a long one. I know it will be good though. I always look forward to our time alone when we just get to be together. She is such a special girl.