Numbers

I have always been kind of a 'numbers' person. I usually did well in math in school and I enjoy figuring out math equations (to an extent!) At this point in my life, with four kids, there are always a lot of numbers floating around in my head. Knowing everyone's birthdays, what time they need to get dropped off and picked up from school or practice or a friends' house, how many pages of homework to do, how many minutes they read every day... I know in every house with kids, the story is the same. With Brooklyn, there is a whole new set of numbers to remember- how many pills she takes every night, what her blood counts are, what temperature her fever needs to be for us to go into the hospital. It is an every day necessity, remembering how many pills on which days - it's not something we can forget or screw up. There are a lot of things and numbers to remember! It's also weird to look at Kelsey now and think that she is about the age that Brooklyn was when she was diagnosed. It's hard to remember back to the time before Brooklyn had leukemia, she doesn't remember anything from before she was sick at all. Taking medication daily and going to the doctor regularly is so much a part of who she is now. She even said the other day that she never wants to take her "special necklace" (her port) out. It makes me happy that we have made her feel special that she has her necklace, but also kind of sad that she is almost comforted by having it there because she's been sick for so long - about half of her life. But there is another set of numbers that is super exciting... Our countdown to the end of Brooklyn's treatment. It is hard to believe that she is almost done! Not to say that the last two years have flown by, because that is not the case at all; there have been some long days and trying times for sure, as well sleepless nights when we have been very worried about her health. But God has brought us through the last two years with little interruption to her treatment schedule, and He has brought us so much support through the caring concern others have shown our family. When we went in to the doctor this week, she heard fluid in Brooklyn's lungs. It is something I've been waiting for - it seems unreal that we haven't been admitted to the hospital since last winter! I am happy about it and extremely glad that she's been so healthy, but we've all had a bad cough and cold over the last month or so and I keep thinking that she is going to get pneumonia again. The doctor wasn't entirely sure that it is pneumonia, but she put Brookie on a additional antibiotic just in case. I was relieved because I was assuming she would have to be checked into the hospital, but as long as she stays fever free, she won't have to. It has been a rough week for her with being on steroids and the additional antibiotic. She has felt progressively worse every day. Her cough does seem to be better though so that is good. The exciting part of her appointment was when the nurse came in and gave us Brooklyn's calendar of treatment for the next few months. Her final day of treatment is April 4th!!! I can't believe it is so soon! I was thinking about it the other day when we were driving somewhere and I got this almost overwhelming feeling of joy and excitement. Next week is her last spinal tap! It seemed insurmountable when they said she would receive about 25 spinal taps during the course of her treatment, and now here we are - at the last one! This entire experience over the last 2 + years has taught me that no matter what the numbers may be, as overwhelming and scary as they may seem, if we just take every day one at a time, God will get us through.

Joy

Wow! I've almost gone 3 holidays without updating the blog! Somehow October - December just seems to absolutely fly by! I always think that next year I'll be more organized so it won't seem to get so busy and crazy, but here we are 3 days til Christmas and I still need to wrap presents and I haven't done hardly any baking and I'm running out of time! We had a really fun Halloween. This was our second year trick-or-treating in our new neighborhood and we had fun walking around with friends from school. The kids took their pillowcases so they could hold as much candy as they possible, and they still have candy left!! November was crazy, the kids had conferences at school so they had a full week of minimum days and then a week off for Thanksgiving. I loved hanging out with them so much, I felt like it was summer again- only colder! I took all the kids to get a haircut one day on their break. It was Kelsey's first haircut ever and she was so cute, asking me beforehand if it was going to hurt. :) The more I thought about it, I think it may have been Brooklyn's first haircut too. Before she was diagnosed, I was letting her hair grow long and it was so beautiful and thick for only being two! I am sure I trimmed her bangs a few times, but I don't think I ever took her to a shop to get her "first hair cut." Of course last summer, when her hair was all falling out, we shaved her head, but I don't count that as her first one. I went to one of those kid places that has toys and movies and she was so excited to sit in one of the race car chairs and get her hair cut. She had another spinal tap in November, and while we were there, I was thinking that she only has one or two more to go until she's done! When they told us that first week we were in the hospital that she would have about 25 spinal taps, I just cried. I couldn't imagine her having to go through all of that. Now I feel like I could cry because she has almost completed all of them! She is truly amazing. We got to spend Thanksgiving with Mike's family in Southern California.  It was so much fun to be down there and play with all of the cousins and aunts and uncles, and Grandma and Grandpa of course! The weather was beautiful and the pool was warm so the kids went swimming every day! The first weekend in December, we were fortunate enough to go to a party at the hospital for kids going through treatment.  It was so nicely done, there was food and treats and crafts and activities for the kids, and each of the kids that attended (including siblings) got a present from Santa.  It was really such a nice thing that our family all got to do together. This month when Brooklyn had her week of steroids again, I felt so bad for her. I could see that when she would get angry, it was like she didn't have any control over it. I felt like I could better understand the term "'roid rage". We will always joke about her anger when she is on the steroids, but this last time, I felt like I could really see it taking its toll on her. She would just explode when the littlest thing set her off, but you could tell she didn't mean it and she would cry after she would get so mad. She also felt horrible again and would fall asleep on the couch a lot. The director at preschool called last Wednesday to tell me that Brooklyn wasn't feeling well and was resting on a chair with a blanket, which usually doesn't happen. She usually powers through and plays even when she isn't feeling great. She stayed home on Friday and then Monday, she threw up in the car the whole way to school, so we turned around and came back home. We try to stay in our routine as much as possible, but some weeks are harder than others to stay on track. We have been extra busy lately because the kids have had performances and parties at school and the girls had gymnastics performances too. We've had something to go to almost every day over the last couple weeks. Mike and I did get a little break last weekend when we got to fly to Scottsdale for his company's Christmas party. It was fun to get away and relax, even though it rained the whole time! :) We must've brought the cold weather with us! My parents stayed with the kids and we packed the weekend for them with basketball for both Braden and Kayla and going to see Santa and the firefighters when they drive through the neighborhood Saturday night. The highlight for Brookie was when an elf ran up the driveway to give her a candy cane because she didn't feel well enough to go down the street with the other kids to see Santa. Brooklyn had her performance for preschool Wednesday night. She did a great job and was so excited to sing on stage with her friends. It is amazing to see how well she is doing even with all the medicine she still has to take every day. I was thinking the other day that it is hard to remember what life was like before she got sick, and if it's hard for me to remember, I'm sure that she doesn't remember a time when she didn't have to take medicine. It's such a normal thing for her now, sometimes she even reminds us that she needs to take it. When I think about all she has gone through, and been so strong the whole time, I know that she will be able to get through anything life brings her way as she grows older. We have felt so incredibly blessed throughout this experience with the support we have received and still receive today. We hope you all have a wonderful Christmas with your families. We are looking forward to another fun Christmas with our little ones.

Long Road

It has been so long since I've written an update! It seems like we are busier than ever and I get so tired at the end of the day that I just keep thinking- I'll write tomorrow. Brooklyn has started preschool! I was so happy after the first 'meet the teacher' day when we left and she said, "I love my teachers and I love my class." Our preschool director is wonderful and put a lot of the same kids together in class again and they also have one of their same teachers from last year. I think that it is great for Brooklyn because she wasn't always excited to go to school last year, and missed a lot of days when she wasn't feeling well, so the similarly of her school environment this year is good for her. Her blood counts have remained good, even with her being on the highest dosages of all of her medications. It proves once again how strong her body is and how blessed we are that she is fighting so hard to stay healthy. This last month has been a long one though. I was noticing the effects that this disease and treatment process has had on our whole family. It seems like we have been doing this for so long, and I know we are close to being done (she will receive treatment through April or May) but we are all kind of run down from the last year and a half. It makes me super thankful that the treatment plan for girls is shorter than the plan for boys- boys have to do it all for an additional year! Ugh. This last round of steroids was a tough week in our house. Whenever Brooklyn had to take them, I can tell that she doesn't feel very well the whole week. This last time, instead of eating more than normal (as you would expect from steroids), she ate almost nothing at all. I don't know why that happened- if she was just feeling so bad that she didn't want to eat anything, or nothing sounded good or what. It was hard because I could tell she felt terrible and I think eating nothing just compounded that. I kept trying to convince her to eat something, but she just didn't want to. She fell asleep on the couch two afternoons and was really crabby to everyone all week. She will say mean things to us and it's hard to not get upset about it after she does it over and over. I know she doesn't mean to be mean, but it's a challenge trying to balance disciplining her for her actions and deciding what to let go because we know she's feeling so bad. What has added to the challenge is that Kelsey has started mimicking the bad things that Brooklyn says. That puts me in an even harder situation because I have to reprimand Kelsey for saying mean things, but I know she is learning it all from watching Brooklyn. We have tried to use Kelsey's bad behavior as an example to Brookie of why she can't be mean to others, so hopefully they will both learn and only happy words will be said in our house. :) I can also see the drain on the other kids. It was Braden's birthday a couple weeks ago and we had our family party the night of his birthday. It was extra special because my aunt and uncle were visiting from Montana so they got to be here with us. Part of one of Braden's gifts was some bubble gum. It was one of the nights that Brooklyn didn't want to eat anything and she started screaming and crying that all she wanted was some of Braden's gum. We have been trying to get her to just talk or ask for things that she wants without freaking out, but it's a hard lesson for her to learn. Braden finally walked over to her and handed her the roll of bubble tape. It was so sweet and so mature of him. I bought him a new pack of gum the next day and told him how proud I was of him for giving his present to her, and he said, "it's just gum mom." I know it's not a big thing, and I'm so happy that our kids are good at sharing :) but I hope that they don't develop any kind of jealousy or bitterness towards Brooklyn because she so often gets her way. I don't think they will because they really seem to rally together as a team whenever she gets in trouble. I told her that if she didn't act better yesterday, she wouldn't get to help us decorate for Halloween, so Braden and Kayla piped up and said, "then I'm not decorating either." I am so happy that they do stand up for eachother when they feel like they need to.  I started crying this morning because it can be so hard when she changes her mind so frequently. Before we left for school, Brooklyn wanted Kix, then two minutes later she didn't want any. So I gave her a muffin that I know she likes and had eaten the night before, and she started screaming that she didn't want that, she wanted Kix in a baggie. I started thinking, how am I going to make her act better? I try and try to talk to her about the right way to act and talk, but she still acts out. I keep thinking that when she is done with her treatment and doesn't have to take medication every single day, everything will be better. She'll instantly be kind and loving because she will feel better. But I just came to the realization that that isn't going to happen. It's similar to her and eating. I know the chemo can change the taste of food for her, but I can't imagine that all of a sudden when she's done, she is going to want to eat vegetables and the dinner I am serving every night. Now, that can be said of lots of kids, I'm aware that most kids are picky eaters, and that is something that we can work on, but we will have to work on her behavior as well. I am in no way trying to sound like a sob story. I know how amazingly blessed we are to have the support from our family and so many people are praying for Brooklyn and our family. And, there is a light at the end of the tunnel. She is being cured and she will be able to grow up and live a normal life. I was thinking today about her doctor telling us that 30 years ago, the cure rate for ALL was like 5%. Today it is closer to 95%. I am so thankful for the simple fact that we live at this time, when our little girl can be cured. And I know that we have never been alone. We sang a song in church a few weeks ago that said, "Never once did I ever walk alone. Never once did You leave us on our own. You are faithful, God you are faithful." It is the perfect chorus to describe our walk the last year and nine months.  We are blessed every day and I am so thankful for that. And Brooklyn still lights up a room with her smile and her heart. She is a joy, even through all her tough days.

Strength

When I think of the word 'strength', I typically think of something that is strong. A body builder, a heavy duty industrial structure, something big. But Strength can be witnessed in a variety of ways. It is evident in a widow who has unexpectedly lost her husband and has to figure out not only how to run her household, but how to raise her kids on her own. It can be seen in an athlete who gives up so much of their personal lives in order to strive to become the best at what they do. It can be seen in a couple who unselfishly tends to every need of their handicapped child every day of their lives. And it can be seen in a four year old child, battling a life threatening disease yet wearing a smile unceasingly. We had Brooklyn's monthly checkup with her oncologist yesterday. She is still handling all of her medication really well, and her blood results from yesterday confirmed that she is a strong fighter. Her ANC level has consistently been above 1500,  so the doctor increased her medicine once again. She is getting a higher dosage now for 3 out of her 4 weekly medications, and the reason the fourth wasn't increased is because it's already in the high range for her size and age. It makes me uncomfortable to give her so much medicine. I know the doctor knows what is best for her, he is actually a professor at UC Davis and has done a lot of research studies on pediatric cancer, but as a mom, I still hate to give her so much. I was talking to my dad recently about it and it is basically like she is a healthy kid that we are making sick because we are giving her all this medication. Mike is always good at reminding me that the studies have shown that her blood levels need to be in this certain range for 2 years in order to be sure that the cancer won't come back. When I think of it that way, I know that what we are doing is the best thing for her, so that she can grow up and have a healthy, normal life after all of this treatment is done. It just seems like she's been doing it for such a long time already. Her steroids that she is taking this week were one of the meds that was increased, so it will be interesting to see if the increased dose makes a difference in her mood swings or eating habits at all. She also had a spinal tap today. She was scheduled for one of the first ones, so we had to be to the infusion room by 8:00. She was great getting up and out, but didn't know why she couldn't have anything to eat on our way. My mom met us there so she could take Kelsey back home with her while Mike was home with Braden and Kayla, getting them up and out to school. They are already in their third week (which seems crazy!) and they are both loving their teachers and being back with friends. While Brooklyn's port was being accessed in the infusion room, one of the nurses helped us get caught up on our beads for Brookie's 'beads of courage' necklace. It always seems like things get so busy that I forget to ask for the beads she has earned when we go into the clinic, so we had over a year to collect at our quick appointment today. As I strung them together this afternoon, it was pretty emotional to think of all she has gone through in the last year and a half. I would've never wanted this for her, or for any child for that matter, yet she has shown such incredible strength through this whole process. Even today, waiting for her spinal tap, she played in the waiting room with toys and stickers, laughing and joking with the nurses and me like we were just at a big playdate. We usually have a resident anesthesiologist that administers her anesthesia, and they don't ever give her enough the first time, maybe it's just that her body is so strong, or she's used to it so she needs a little more medicine to fall asleep all the way, but it happened again today. When the doctor tried to poke the needle in her spine, she squirmed half way across the table. The anesthesiologist had to give her more, and the doctor was finally able to get the needle in the right place in her spine. He did a good job, but I always wince when her body squirms because I think she can feel the giant needle. :( She never seems to remember anything about the surgery though. She found the bandaid on her back this afternoon and asked why she had it there, so I told her it was from when the doctor gave her some medicine in her back, and she had no idea what I was talking about. She didn't remember any of it. What an amazing gift that God has given her in the ability to be so strong throughout all she's going through, and also the ability to completely forget most of it. We were extra lucky when we were done today because we got to meet my parents at Leatherby's for lunch. It is my dad's birthday today and both he and Brooklyn decided that 'wedabees' would be the perfect place to go after her spinal tap.  She enjoyed her caramel sundae down to the last bite. :) She starts preschool next week, and my prayer is that everyone stays healthy this fall & winter as colds and flu bugs start to pop up again around school. I am so thankful for our fun summer and wonderful visits we had with our family and friends, and look forward to many more in the months to come. We are continuously uplifted by strength from our awesome God, and inspired by Brooklyn's strength and determination.

Hurry Up and Slow Down

When you first have a baby, people who already have children often say, "it goes so fast." It can be hard to see that in those first few months when you aren't getting sleep, there's a lot of crying and you're up to your ears in diapers. But as your kids get older and you have more kids, the time does seem to speed up. This summer has been a good example of time flying. This month, we have had friends come visit from Arizona, Texas and the bay area. It has been so much fun to get visit with people that are so special in our lives, especially since we really haven't traveled much since Brooklyn got sick.  We typically like to go places and visit family and friends (the crazy ones that can handle this family of 6!) but we have stayed pretty close to home the last year and a half to avoid infection and to be sure we aren't too far from Brookie's doctors. The first year or so she also had a lot of doctor appointments, home health visits and infusion room trips. With her schedule now, we are able to be more flexible, as long as we have her daily medicine with us when we go somewhere. Along with our fun visitors, Braden and Kayla also went to VBS at our church one week this month. Brooklyn actually was old enough to go this year, but we didn't want to expose her to being around so many kids in such close quarters. I tried to do fun stuff with the two little girls each morning that the older two were at camp. They have also been playing Jr Golf at my parents' golf course on Mondays. Yesterday Braden won the 6 hole and Kayla won the 2 hole championship!! This last weekend Mike and I got to go up to Oregon for a good friend's surprise birthday party. It was beautiful and relaxing and fun to hang out with friends we don't get to see often enough. The kids had a fun weekend with my parents and aunt and uncle, but their favorite part was when GaGa and Nana finally got their hair wet in the pool! I can't believe that school starts in less than 3 weeks but when I look at all we've done this month, I can see how quickly the time has gone! I'm still in denial that they have to go back so soon. Yesterday morning Brooklyn had her monthly appointment. It was actually great to talk with the doctor about the remainder of her treatment and what she will have to do when it's over- how often she'll get tested, when her port will come out, when she will catch up on her immunizations, etc. Her growth and everything is still great and she did well getting her blood drawn and getting chemo in the infusion room again. Her blood counts were all really good, so we took the kids to Six Flags today. The older kids had gotten tickets from reading a certain number of hours during school this year and we wanted to have a fun family day together since school is starting so soon! It was a perfect day to go, we hardly waited in a line more than 10 minutes and the weather was great. Brooklyn and Kelsey got tired toward the end of the day, but so did I! I so enjoy these days when the kids are still young and we have fun all being together, I want time to slow down so that we have more days like this. However, at the same time, I feel like I want the next year to go by fast so Brooklyn can be done with all of her treatment and surgeries and we won't have to worry about her getting sick anymore. But then, everyone will be a year older and into more stuff, so I think I want time to go slow until then. I know that what we want most of all is for our whole family to be healthy and happy, and I know that time will be here soon, and we are enjoying every day until then.

Ups and Downs

I was lucky enough to attend the wedding of my good college friend, Mary, up in Portland a couple weeks ago. Mike was on the committee in charge of planning a golf tournament here in town on Monday morning, so he wasn't able to go with me. I was sad to travel without Mike and the kids, but it was a really great weekend, getting to see all of my college roommates and some other good friends. It was nice to get away for the weekend and just not have to do laundry for 2 days! Mike and my parents took care of the kids while I was gone, and they all had a great time and, thankfully, stayed healthy. I flew back on Monday afternoon and our home nurse Wendi had come over that morning to check Brooklyn's blood. I had to stop at Costco on my way home to pick up some of Brooklyn's prescriptions, and Wendi sent me a text with Brookie's numbers while I was shopping. Her ANC has been consistently high and they have increased two types of her chemo in order to make sure that she is fighting as hard as possible to keep the cancer away. The one chemo that she takes every Tuesday has made her really sick every Wednesday morning, so much so that I have been wanting to call the doctor and tell them I don't want her to have the increased dosage anymore, at least not as long as it makes her so sick. However, when Wendi texted her numbers, her ANC had dropped from 2100 to 840. It totally stressed me out because even though I know that they want her range to be in between 750 - 1500, I am always happy when she is on the upper end of that spectrum because I feel like her body is strong and healthy. Technically, since her number was 840, she still fell in the range they want her to be in, so she was okay. However, if it would dip below 750, they would hold her chemo for awhile, and if it gets down to 500, that's when we are on "house arrest" and aren't allowed to go anywhere and have to be really careful with germs. It was crazy because I have been feeling so positive and confident in the last few weeks, with going out places, taking Brookie to gym class, even just trips to the store. Her counts dropping reminded me how truly dependent we are on how hard her body is fighting and that I shouldn't be over-confident in my thinking. We really have been doing almost everything we want to do and Brooklyn has been feeling well and keeping up with the rest of us. I realized that Monday when I got home that we need to still be cautious and careful and slow down. I decided not to take her to gym class that week, just to try to minimize any germs that she might be exposed to with so many other little kids in the same class. I also tried to not take her out as much. I kind of wanted her levels to be checked again last week, just so that I wouldn't be worrying about them or wondering if they had dipped, but they didn't think that it was necessary. Last week was a busy one for us. Braden started baseball camp at Sac State so we were up and out every morning by 8:15. It was hard to get everyone up and fed and out, but it was nice to be up and ready for each day bright and early. We have been having fun playing outside with friends and swimming and enjoying the beautiful summer weather. We managed to make it through 2 weeks without Brookie getting sick, and me not worrying too much about her counts, but just trying to be extra cautious with our hand washing and places we choose to go. I know that God is listening to my worries and has His hand on Brooklyn, and she helps me find strength too when she will say things like, "Mom, you know what? I love God the most." just out of the blue sometimes. Friday, I got to take the girls to see Elmo and the rest of the Sesame Street characters in a performance. My aunt's company gave us tickets in their suite, so it was great because we were really not around many people, even though we were in a big arena. The girls loved all the singing and dancing and it was fun to get to take them to a show. Yesterday, we went back to the Oncologist after dropping Braden off at baseball camp again. The doctor thought Brookie looked really good and listened to my concerns about her nausea (although interestingly enough, last Wednesday she didn't get sick like she had been, so maybe her body is getting used to the increased dosage). After her checkup, we went to the infusion room to get blood drawn and her monthly chemo. It was a little crazier than usual because Kayla and Kelsey were with us, but everyone did fine. I was thrilled to get the message last night that her counts are back up to 1700 again. I am amazed at what a strong little fighter she is and how hard her body works to stay healthy. I was pretty excited this morning because I actually had to trim Brooklyn's bangs. It was just about a year ago that we sat outside and shaved her head because her hair was falling out in such big clumps. It is growing back just beautifully and she is looking so good, it is wonderful to see how far she's come over the last year.

Summertime!

School's out! Yay! The kids have been out of school for 2 weeks now and we have been loving it! It's not that we slow down a ton when school is out, it's just great to be on our own schedule. The weekend after school got out we went to a baseball game in Stockton. We had so much fun and once again Brooklyn and Kelsey were obsessed with the mascot. Our friend who coaches the Visalia team made sure that each of the kids got a ball, so they were super excited. Then we had a party to celebrate my parents' 40th anniversary. It was so much fun to honor their amazing commitment to each other. Last Monday Brooklyn had another spinal tap. It was the last time we were going to see one of the nurse's in the operating room because she is retiring, so it was sad to say goodbye to her. We get really attached to these nurses who help to make this time in our lives so much easier. They really have an amazing gift of being able to make such a serious situation, something that we are able to get through with ease. We went to the water park by our house last week which was really fun. It was a hot day so the water felt good! It was also great because last summer we weren't able to go to the park much because of Brooklyn's broviak and the fact that it wasn't supposed to get wet. Swimming has been so much easier too. Brooklyn apparently thinks she is part dolphin because she wants nothing to do with floaties anymore. She is fearless. She is swimming all around the pool on her own! She's not a super strong  swimmer yet so Mike and I are on the edge of the pool or in with her at all times. It is great to see how strong she has become. We also finally finished our baseball season! Kayla had her last game and then end of season party last Saturday and then we had Braden's last game after that. It was also Kelsey's 2nd birthday that day! She had a fun filled day of baseball and we celebrated her birthday that night. Sunday was Braden's end of season party, and it was fun to have the whole team together hanging out one last time. This week we've had some fun days relaxing at home and playing with friends. Kayla and Brooklyn took turns sleeping in Braden's room this week, which was super fun because they don't usually get to do that during the school year. It was sweet to see how much each girl missed sleeping in the same room with her sister when they were apart just one night. I love that as they are all growing up together, they are also becoming friends. I took Brooklyn to My Gym today for her first class in over a year. The last time she went to a gym class was the day we took her blood test and found out that she had leukemia. It was so exciting to see her get to enjoy running around and playing, just like she did when she was 2. I think that going to class will help her with some of her gross motor skills that may have been a little affected by having so much chemo. Her blood counts have all remained good, so one of her types of chemo was increased this week. She has been nautious pretty regularly this last month, but it's almost just kind of normal in our morning routine now. She'll drink some juice and then say she needs a bucket and either dry heave or spit up a little. It was tougher this Wednesday morning when I jumped out of bed because I heard her throwing up in the bathroom. I think the upped dosage of medicine made it harder for her because she was holding on to the toilet for dear life and her whole little body was heaving. It was really hard to see her going through that. It was also hard to hear my parents' friend say that he is just starting to feel better now, and he finished all of his chemo and radiation 6 months ago. There's a lot of yuck that's going into her little body, but somehow it is curing her, so it is going to be worth it in the end. And she's still smiling every day.