Saturday, December 22, 2012

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.


Friday, October 5, 2012

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.

Wednesday, August 22, 2012

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.

Tuesday, July 24, 2012

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.

Tuesday, June 26, 2012

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.

Friday, June 8, 2012

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.

Wednesday, May 23, 2012

Family Ties


We have had a pretty mellow couple of weeks. Well, it's never really mellow around our house, but at least we have been injury free and all of our eyes are working just fine. :) It's funny though because Brooklyn just said yesterday, "Mommy, my eyes aren't blurry anymore." I'm pretty sure they've been fine for awhile but maybe she just thought of putting the ointment in and how it would make them blurry for awhile. It is strange how Brooklyn's treatment has become such a normal part of our everyday lives. Someone just asked me yesterday if Brooklyn's treatment is pretty similar for the remainder of her schedule. I said yes, and just rattled off that we give her chemo pills at home every night, she gets chemo through her port once a month and spinal taps every three months. She kind of laughed and said something about how it was just so automatic for me explaining it, but that for anyone else, hearing all she has to do, is a lot. It made me stop to think and if you would've told me a year and a half ago the list of treatment that has become so normal for us now, I would've hyperventilated. In fact, I was just looking back through a prayer journal that I had and it was from October of 2010, when Brookie was having fevers and getting sick so often and I was praying for her blood tests and that her pediatrician would figure out what was going on with her. I was of course worried that it could be something bad, and was hoping that it wouldn't be. I do think that God heard my prayers and in a way blessed us with Brooklyn getting the type of cancer that she has. The fact that the cure rate is so high for ALL and that we have such a normal life even though she is fighting such a serious disease is really amazing. I don't know if I'm ready to say that I'm thankful that she got Leukemia, but I'm thankful for the way He continues to help us through it. It is such a normal part of our lives now that I have noticed how it has affected our kids in the last couple weeks. Kelsey loves to take the thermometer off the counter and go check Brookie's temperature, and she will always point at Brooklyn's medley of medicine bottles and say she wants medicine too. Then last week, I was listening to Kayla and Brooklyn as they were playing "pretend" together. They were most likely playing "mom and sister" where one of them is the mom and the other is the daughter, or they are both sisters, which always seems so funny to me because they really are sisters, but somehow it is more fun to play "pretend sisters." It's even funnier when I am the "pretend mom." I always think, will they clean up their room if I tell them to as the "pretend mom"? Anyway, Kayla said, "Brookie, pretend you have to go somewhere." And Brooklyn said, "Okay, I have to go to surgery." Kayla replied, "No Brookie, you really DO have to have surgery and you really DO have cancer, so pretend something else." I wanted to cry. Then Mike just told me the other day that when he was talking to Brooklyn, he said, "It's pretty cool that you have a special necklace isn't it Brookie?" (we used to call her broviak tubes her 'special necklace', so we still refer to her port as her special necklace sometimes.) She said, "yea, 'cause not a lot of kids have cancer." Then, about a month ago, our kids were playing with some kids we didn't know very well and one of them said something about how Brookie's hair was so short it looked like a boy's. Braden was so upset about it but he didn't want to say anything because he didn't want her to hear what they had said. I know that our family will grow and become stronger because of how Brooklyn's cancer has affected us all and I hope that my kids will be more sensitive to others with diseases or disabilities because of this time in our lives. I know I am learning more, through them, every day.

Tuesday, May 8, 2012

Aye Aye Matey!


We have remembered in this last week how important our eyes are. Last Monday was Kayla's birthday. We got her off to school with cookies for her class to celebrate. Brooklyn had her monthly appointment with her oncologist so my mom came over to help watch Kelsey and get Braden to school. As I was getting Brooklyn in the car, she found her stethoscope from one of her nurses. It is a real one, and she likes playing with it, pretending to be a doctor and listening to our hearts as well as checking her stuffed animals' heart rates. However, as she grabbed it out of the back of the car, I noticed that one of the rubber ear pieces was missing so I told her she could hold it but she couldn't put it in her ears because she could get hurt. I buckled her in her seat and ran back in the house to get my keys. My mom was in the garage talking with Brooklyn and all of a sudden she started yelling. I ran out to the garage and saw the stethoscope stuck in Brookie's eye. She had had it on her head and somehow it slipped into her eye. I could see it was stuck under her eyelid so I ran to help her and she got it out right when I got there. I didn't know how bad it was but she was crying and scared and her tears had blood in them so I was worried for her. My mom got a wet washcloth and Brookie held it on her eye all the way to the doctor's office. Right when we pulled into the parking lot she said, "mom, I can open my eye all the way!" like it was the most exciting thing she'd ever done. I was so happy that we had an appointment that morning so we could get it looked at right away. The oncologist we had that morning was so nice and said she thought Brooklyn was looking really good. After her exam, she looked at her eye and put some special dye in it to see if the cornea had been scratched. We could clearly see a scratch in the white part of her eye, but couldn't tell that there was a scratch on her iris until she put the dye in. It was really cool the way it showed up, but sad that she had scratched so much of her eye. The doctor put some antibiotic ointment in it and then covered it with a patch. She said the cells in the eye multiply so fast that she expected it to be fine by the next day. As we were talking after her patch was on, I told her she was super cool, like a pirate, and she said, "like Izzy?" from Jake and the Neverland Pirates. Yes, like Izzy. Then we had to go into the infusion room to draw blood and get her chemo. That all went well and Brookie picked out a pillow case for herself and for each of her siblings. Even in her time of pain, she was thinking of them. When we got back home, we picked up Kelsey and Kayla and went to the park to have pizza and cake with her friends from school. Brookie ran and played with the rest of the kids just fine, although I was a little worried about her balance since she could only see out of one eye. It was so crazy because I kept feeling like you see shows on TV all the time where stuff like that happens to kids, but you always kind of think, that wouldn't happen to us, I'm a better parent than that. How does that happen? But it happens so quickly! The stethoscope is in the garbage now, but we will be more careful with everything I think. That night we had our family party and it was a great time to be all together. Tuesday morning we had to go to the pediatrician to have him check her eye. The scratch that had been on the blue part of her eye was already gone but I had noticed that morning that she had a scratch on the other side of her pupil as well. Her doctor said that she was really lucky that she didn't scratch the eye all the way across because she could've had vision damage if she had. He wanted us to use the ointment three times a day for a week but it was weird because when we put it in her eye, she cried and said it stung, which it wasn't supposed to. He thought it was probably just a reaction between the eye drops he had used and the ointment but he prescribed a different one for her just in case it was truly bothering her. However, when I went to the store to pick it up, they didn't have it and no other pharmacy in the area had it either. So I decided to keep the one we had and try it again to see if it was ok. She did fine with it the rest of the week although sometimes she would say, it stings! And I would say it does? And she would say - just jokin!  After a few days she started asking which eye it was that she had scratched, so I knew it was getting better. :) She was even able to do her swim lessons Wednesday and was fine. The rest of the week was pretty uneventful (thank goodness!) except for baseball games. Mike's parents came to town Friday so we got to spend the weekend with them. They got here in time to go to Mike's softball game Friday night, we had two baseball games Saturday and one last night. Baseball mania! Mike's mom is done with chemo and is on the mend and we are so thankful for that. We got to celebrate her birthday last night after Braden's game too, so that was great. Brooklyn's latest 'incident' has got me thinking about how we aren't really thankful for what we have until we don't have it anymore. For instance, we don't usually wake up thanking God for our eye sight or our ability to hear or walk, we just do it. But once one of those things is injured or hurt, it's all we can think about. When you stub your toe really bad, every step for the next hour or so hurts; if you break your foot and are in a cast, you can't wait until the day when you can walk normally again. If you had to wear a patch on your eye every day, you would count the days til you could use both eyes again. And most likely, you would pray for God to heal you quickly. We have just under a year left for Brookie's treatment. We are getting closer and closer to her being declared cancer free and I am learning to be thankful for every healthy day. One of the songs we sang in church this week said "I lift my eyes up, my help comes from the Lord." I thought it was so appropriate since eyes were our focus this week. I am thankful my eyes can look up.

Tuesday, April 24, 2012

Questions


Brooklyn has been feeling well the last couple weeks. She hasn't had much nausea in the mornings and when her home nurse Wendi came out last Monday to check her blood, her numbers were all right where they want them to be. We have still been struggling to get her to eat healthier food, so dinners at our house are not the most fun time of the day. She has been preferring to not eat than eat something she thinks is going to be yucky. Even things she typically likes, like mac & cheese, she will refuse if it doesn't look the right way. It is good to see that her stubborn strength is still helping her battle the cancer, it just doesn't make meal time very easy. :) Two weekends ago, Mike and I got to go to Arizona for a trip with his work. It was a really nice resort and it was good to get away together for a few days. My parents and aunt and uncle all watched the kids and they had a fun time. We were nervous to be so far away, especially because the resort didn't have cell phone service, but everyone stayed healthy, so that was a huge blessing. We haven't been away from them for that long before so it was really good to get back home on Sunday, I swear they looked like they had grown! :) Kelsey is starting to talk so much more and wanted to tell us everything she did with "Bubba, YaYa, and Bookie." :) I woke up that night with the flu, which made Monday and Tuesday hard because I wanted to stay away from the kids so they didn't get it, but they just wanted to be near me because we had been gone all weekend. Thankfully I was better by Wednesday and no one else got sick. We had a fun Saturday filled with back to back baseball games which was a little crazy for Mike, running from Braden's game straight over to Kayla's field. It was a really hot day too, so we all got some color, my color was mostly a reddish hue since I made sure to lube up the kids with sunscreen but forgot my white legs of course! We were all so hot and sweaty when we got home, the kids and Mike actually jumped in the pool! Their jaws were shivering, but it was good to cool down and clean up a little. Then we got to celebrate my uncle Jack's birthday that night which was really fun and good to see some wonderful family and friends. Sunday after church we drove to Vacaville to meet our good friends, the Mullanes at the Nut Tree. We were quite a scene getting a table for 12 (they have 4 kids too), but luckily the restaurant we went to was loud and had plenty of other kids in it, so the noise level we brought just added to the mix. :) The kids all had a fun time playing on the play area afterward and then we headed home to finish homework up before Monday morning. When we were driving one day last week, Brooklyn started to ask me questions about God and Heaven. She said, "Do God have Petaroni pizza mom?" I said yea, I think he does. She then asked if He has tables. I said, yea, He probably does. Then she asked if God has medicine. I said, "You won't need medicine when you're in Heaven Brookie because you won't be sick." She wanted to know if we are young or old in Heaven and I said I wasn't really sure but that she didn't need to worry about that because she wouldn't go to Heaven for a long time, after she grows up and gets married and has kids and she is really old. She almost started crying and said, "I don't want to be old," which made me almost start crying because one thing every mom wants is for their kids to grow up and live a full, happy life and not die until they're old. I said, "I want you to be old Brookie." But she just kept saying she didn't want to be. I know that she didn't know what she was saying and that she wasn't getting deep and philosophical on me or anything, she is 4 after all, so I just changed the subject. But this Sunday in church, we sang one of my favorite songs which always makes me cry. The chorus is talking about what life will be like in Heaven and I thought it was perfect after the conversation we had just had last week. The words say, "No weeping, no hurt or pain, no suffering, You hold me now, You hold me now. No darkness, no sick or lame, no hiding, You hold me now, You hold me now." It will be wonderful, whatever age we are.

Monday, April 9, 2012

Spring Break


Mike was laughing at me last night because I had just told him that I think this last week was the best week ever. He said, "I think you like spring break more than the kids do." It might be true! I love being on our own schedule and getting to do fun stuff together, and getting to sleep in a little bit too! Monday, Brooklyn had her monthly appointment with her oncologist, and it was the first time all of the other kids have come with us to her appointment. The doctor said she was looking good so then we headed over to to the infusion room. I wasn't sure how it would work there because they only allow one family member in while she is in there, but Mike had a lot going on at work, so he couldn't make it to the appointment, so I had all 4 kids with me. They were really great about it though and put us in one of the isolation rooms. It was so cute because Braden and Kayla were really into watching the nurse draw Brooklyn's blood and give her the chemo, and they kept saying how brave she was. Brookie was loving showing them how she could help with everything from cleaning her port to flushing it and helping shake up the blood. It was really sweet because the nurse took Brooklyn into the other room to pick a prize when she was done and she came back with a present she had picked out for each of the other kids. I took them out for frozen yogurt after we were done because they were so good during both appointments. Tuesday morning we woke up and got on the road to head to San Francisco for the day. I thought it would be fun to take the kids to the SF zoo because Mike and I had been there one other time when Braden was really young and had loved it. It was a really fun day and we loved seeing all the different animals and hanging out all together as a family. After we were done there we took the kids down to Pier 39 to see the sea lions and have dinner. The weather was perfect for us all day and it was so much fun to take a little day trip. Wednesday the kids got to play with some friends while I ran some errands to get ready for having bunco at our house that night. They really wanted to stay up and watch all of the moms roll dice, but they were all pretty tired from our big trip the day before. Thursday morning we got up and went to horse camp. We have been to this same camp a few other times, and the instructor is great with the kids and our kids love being around all the animals. I stayed with them because I wanted to make sure that Brooklyn was doing okay since she was one of the younger kids. They got to hang out with chickens, bunnies and horses and the older three all got to ride on a beautiful white horse named Stella. They also got to play on the trampoline and ride the zip line and finished the morning with an Easter egg hunt. They had a lot of fun in just three hours! Kelsey loved playing with everyone too, and even got to sit on Stella with her big brother. We had lunch and played at the park with our friends after camp and then rushed home for Kayla's t-ball practice. We were all pretty tired that night! Friday we had lunch at our favorite pizza place with some good friends and the kids spent every quarter we had in the game room. Going out to lunch and to the zoo and horse camp are new adventures for us since we haven't done a lot of that for the last year. It still freaks me out to have Brooklyn touching everything and sitting or laying on the ground, but I just try to wipe her hands with wipes as often as I can and hope that she doesn't get germs that will make her sick. She was on steroids again all week, so she had a few temper tantrums each day, which would usually end up with her crying on the floor, wherever we were. I know she wasn't feeling 100% so we tried our best to have extra patience with her during those times. Saturday, Braden's team had a scrimmage against another team so we all went out to watch. It was really fun and the team looked great! Coach Mike was really proud of them. :) After the game we ran some errands and then came home to work on a project Braden has due for school this week. Yesterday we woke up at 4:00am and 5:45am to Braden in our room wondering if it was time to go hunt for eggs yet. A little before 7:00 we all finally got up and came downstairs to find the Easter Bunny had visited our house! The kids had a wonderful time looking for eggs and we had a fun morning at home. We then went to a wonderful service at church and then headed over to my parents' house for the afternoon. My aunt and uncle were there and my parents' good friends the Shaffers came over for dinner too, so it was a wonderful day. We ended the night eating ice cream sundaes around the fire pit, two of our favorite things at Gaga and Papa's house. The kids actually had today off from school as well. We were a little more mellow today since they go back to school again tomorrow. My mom and the kids and I went to a park for a memorial picnic in honor of my friends' father. It was good to see her and spend some time with a family that I was so close with growing up. I took the kids to a playground after we left because they thought they were going to get to "play" since we were going to a park, but they didn't have much chance to while we were there. There was only one other little boy at the park, so we pretty much had it all to ourselves. I love watching the four of my kids play together, their laughter and happiness bring such joy to my heart. I pray that they will continue to be friends as they get older. When we got home I asked Brookie if she was feeling okay because she wasn't looking great and she said, "No, I don't teel good." and then ran outside to play with her brother and sister. She always seems to get a little swollen during her week on steroids, and I don't know if it's from eating more, or just from the drugs or if she holds more water, but her cheeks fill out and her belly gets a little more round. The next three weeks, she always slims back down, but then she starts them up again. I don't know if she's just not feeling great because she just finished steroids Saturday, or if her chemo is making her stomach upset or if she's just tired from our busy week. It could be a combination of the three I suppose. She still amazes me and although her moods may change as quickly as the weather lately, I know her feisty-ness and determination are what are helping her through this tough time in her life. I am so thankful for her strength.  

Sunday, April 1, 2012

Spring is on the way!


We have had a fun couple weeks. The weather has been crazy, with sun one day and then rain for the next three. We've been trying to get outside whenever the weather has been nice & have been loving the sunshine. Brooklyn has gone to two swim lessons and done amazingly well! After her first lesson, the teacher told me that she thought Brookie was almost ready to move up to the next level and that Brooklyn kept asking her if she could just swim across the whole pool. :) She has no fear in the water, so it is great that she is getting some practice in now before we start swimming in our pool this summer. We have also been busy with baseball practice (on the days that it hasn't been rained out!) Mike has been amazing juggling 2 teams, organizing the schedules and teaching 25 kids ranging from 5 to 10 how to play baseball. We haven't started games yet, but it will definitely be exciting once we do! We had the kickoff pancake breakfast last weekend and Brooklyn wanted to wear a jersey just like Braden and Kayla, so they were pretty cute all together. We took the kids to see The Lorax in the afternoon and had such a fun time. The kids loved it and even Kelsey made it through the whole movie without squirming too much and having to go outside. :)  The kids all had fun weeks this week at school and Brooklyn and Kayla had parties and egg hunts in their classes before getting out for spring break. Brooklyn still seems to not be feeling great after the weekend, with the extra chemo making her stomach hurt in the mornings, but her blood counts are right where they want them to be, so it is good that her body is responding the right way. We are also super thankful that we have all stayed healthy the last couple weeks, especially after Kayla had strep throat. Brooklyn hasn't been wanting to eat much besides pizza and candy, so we are working on getting her to eat healthier food, which has been a bit of a struggle. After all, who doesn't love pizza and candy for every meal? :) It is still hard because we don't know if she's just being stubborn or if the food is really tasting bad because of her chemo. We're just trying to take it one meal at a time and explaining to her that we want her to be healthy as she's growing up, but all of that is a little much for a 4 year old to understand. :) This weekend Kayla got to spend the night at Nana & Bumpa's house and Brookie got to spend the night at Gaga and Papa's house Friday night. It was super special for each of them to get some time on their own with my parents and aunt and uncle. It was also super quiet here with just Braden and Kelsey! Braden got to go with Mike to his softball game Friday night, so he loved that too. We are pretty much all baseball all the time around here! We got some stuff done around the house this weekend which was great, and we are really looking forward to having the week off from school this week! Hopefully we will have some sunshine and everyone will stay healthy all week! I know how different spring break will be for us in 10 years, so I am going to be sure to enjoy every day with our kids while they still want to spend it with us. :)

Wednesday, March 14, 2012

Birthday Fun!!


Thankfully, we made it through the last couple weeks without the kids getting sick. None of the kids got the stomach bug that Kayla had, although Mike and I had a few days where we weren't feeling our best, so that wasn't fun. Last Monday kicked off a busy week for little Brookie though, so we were so glad that we were all healthy again. We went to the Oncologist Monday morning and got great reviews. :) She is growing well and is responding well to the increased chemo. Her numbers are actually back up despite the larger dosages making her feel nauseous. She is also cleared to do some "normal" stuff like swim lessons and gym class again! We were so excited because we have taken a year off from pretty much everything in order to minimize her exposure to germs. She also wasn't supposed to swim much last year because she had the broviak in which wasn't supposed to get wet. Now that she has a port, her risk of infection is lower and she is able to start up some classes again! She loved going in the pool last summer, but it was so much work trying to keep her broviak dry and cleaning the site and the tubes over and over, and she wasn't able to swim without help (although she really wanted to), so it will be great to get her started in some lessons to prepare her for a fun summer of swimming! After her appointment, she got her blood drawn and more chemo at the infusion room and then we rushed home to pick up Kayla from school. Tuesday, Brooklyn missed school because she had a spinal tap. We haven't been there for 3 months, but it was astonishing to see how "routine" it has become for us. She understood that she couldn't eat in the morning, and made sure that we remembered our 'surgery bag' full of toys and books that we always bring with us when we go. The nurses were all so happy to see her and 3 or 4 of them gathered all around her when we got there to welcome her and comment on how much she'd grown and how pretty her hair is looking. They were running a little behind, which is hard for little ones when they have to wait to eat, but Brookie started playing with another little girl in the waiting room who was waiting for the same surgery. I have seen her and her mom in the infusion room before and her hair is grown out about the same amount as Brooklyn's is, so I imagine she is at a similar stage in her treatment. She is in 1st grade and was very sweet playing with the toys in the waiting room with Brooklyn (though I still kind of cringe when we play with toys in the waiting room and I think about the germs that are probably on them!) It is crazy to think that as her mom was waiting for her daughter to go in to surgery, she was probably having all the same thoughts and feelings that I was having. Neither of these little girls deserves to have cancer, neither of us want our kids to be sick, but there we all were in the same room, bonding over our unexpected and unwanted similarities. I pray that they have the same support and devotion that we have had from friends and family throughout their journey with cancer. They've changed the rules at the surgery center, so I had to wear a full "bunny suit" - scrubs with the hair net and everything, to go into the surgery room with her. Brooklyn thought I looked pretty funny, and I'm sure I did! She woke up right after the surgery was over this time, usually she sleeps for at least a half hour, so we didn't have to stay for too long. She was tired that night but seemed to feel fine. Wednesday was her birthday!! I decorated the house Tuesday night so it was all pretty when she woke up in the morning. She said a couple times, "I tant bewieve I'm tor years old!" It was so much fun to celebrate and have her feeling good on her birthday. It was so different than last year when she had just finished a month of steroids which made her gain 10 pounds. She was barely able to walk, her whole body was so swollen and she got tired so easily. It is amazing to see how well she is doing and feeling just a year later. We went to get "tozen yodert" for lunch with some friends and then had our family over that night to celebrate. Petaronni pizza and cupcakes never tasted so good! :) Thursday she got to go to school and brought more cupcakes to celebrate with her class. They were all happy to see her and she got to wear a birthday crown all morning. Friday was her birthday party. We got to have it at My Gym this year with a bunch of her little friends. She wasn't able to really leave the house last year for her birthday, so we celebrated at home with our good friends, but she has been wanting to go back to gym class, so it was wonderful to get to have her party there. They cleaned all the equipment for us before we got there in order to minimize her exposure to germs and the two teachers that hosted the party were amazing with all the kids. Brooklyn was so happy and had the best time. She fell asleep on the couch at home before she even opened her presents, it was a big week for a 4 year old! Saturday the kids (and Mike) had baseball practice and Sunday we celebrated my mom and aunt and my birthdays. March is a busy month! This Monday during the middle of the night, Kayla came in crying that her throat hurt and we found out yesterday that she has strep throat. We have her sleeping in Braden's room again and she is doing much better after starting her antibiotics last night, but we're hoping, once again, that no one else gets sick. We had a mellow day at home today, trying to get Kayla to rest so she gets better, and keep the other three healthy at the same time. We had a contest going to see who could wash their hands the most, so hopefully all the germs went down the drain! It has been quite a year for our sweet little Brooklyn, but she continues to amaze us with her strength and bravery every day. 

Thursday, February 23, 2012

Family Fun

We have had a great last couple weeks. Some amazing friends of ours gave us a two night stay down in Monterey, so Mike and I got to go down last week and golf and visit with friends from college and enjoy some time alone together. It was great because it seems like we have been really busy lately and haven't even gotten to talk much, so it was great to get away and have fun. My parents watched the kids and they loved spending time with Gaga and Papa. The kids had Monday off from school for Presidents Day so we went up to Tahoe on Sunday and spent the night with our good friends at their cabin. Kelsey woke up with a cold that morning so she wasn't feeling great and I think the elevation might've been bothering her ears because she wasn't diggin' the snow, but the rest of the kids loved it!! They went sledding and made snow angels and nailed me with a few snowballs. When we got back Monday, our original home nurse, Wendi, came over to draw Brooklyn's blood. Her son Zach is done with his treatment so that is great! He still has some more surgery ahead of him, but thankfully his cancer is gone! It was so great to see her again and catch up. Monday also kicked off the start of baseball season! Mike is bravely coaching both Braden and Kayla's teams this year. He is so good with the kids and really knows how to teach them the game, but it will be a busy spring for sure! Brooklyn wants to play baseball so badly too, so we got her some cleats to wear to the games and Mike gave her one of the extra hats. It's going to be hard to keep her off the fields during the games! When we saw her oncologist this month, I asked about the fact that her ANC level has been so good since she's been on maintenance (except for the two times we've been in the hospital.)  They ideally want her counts to be between 500 & 1500 and they have been higher than 1500 the whole time. I personally like it when they are high because I feel like she is "healthier" and will be better able to fight a virus should she come in contact with anyone with a cold. However, I also know that we want to make sure the leukemia stays away, so it is best for her to receive the right amount of chemo to keep her in the correct range. When the nurse called with her numbers that night, she told us that the doctor wanted us to increase the amount that we give her at home. We actually forgot to do it the first week (awesome job, I know) but we increased her pills over this last weekend. She seemed to do fine with it, but by the 3rd morning, she was feeling nauseous and not great so we let her stay home from school. It is hard to figure out exactly how to make her feel as good as possible, but we are working on it. Giving her some anti-nausea medicine on Tuesday seemed to help her feel better, so we may need to start giving her that more regularly. It makes me a little sad that we have to give her more medicine, but I also trust the doctors and know that they've done enough research to know the best way to cure our little girl. Yesterday after school, Kayla came home with a fever and said her stomach hurt. She felt pretty bad all afternoon and her fever was up to 102 so we made the spare bed in Braden's room and had her sleep in there. Of course we don't want him to get sick, but if Brookie gets a fever, we will have to head back to the hospital, and we really don't want to do that. The kids have all been hanging out together though, so there is a good chance Brooklyn will get sick too. I was thinking this morning that it's kind of like when you're watching a suspenseful movie; you are on the edge of your seat because you just know something is coming and you want to be prepared for it so you're not thrown off guard, but you don't know quite when it will happen. Hopefully our life won't be like a crazy movie this weekend, but I might pack a bag of stuff so we're ready just in case we have to go in. Mike and I were just saying the other day that it is really amazing how 'normal' our life is while going through this battle with Brooklyn. We are so thankful for all the research that has been done to help find a cure for all of the children with leukemia. Our doctors and nurses, outreach from our friends and prayers have really carried us through this time, and we are thankful.











                                                       


Thursday, February 9, 2012

What a Year


It has been just over a year since our lives have changed dramatically. Yes, of course our lives changed a lot after we got married, and after we had our first child, and then the next, and then the next...but to receive the news that one of your children has cancer is never something you expect. It is almost surreal to think back to the night when our pediatrician called me at home to tell me that Brooklyn's blood tests had come back and that he was pretty sure she had Leukemia. I was floored. She had been sick back in October for a couple weeks, so our doctor ordered some blood tests, which came back pretty normal, but he just wanted us to follow up with more tests the next couple months to be sure all of her numbers were going the right way. I really hadn't wanted to go in that day in January because I knew she was fine, and I hated having to get her arm poked for nothing. She had been acting totally normal, in fact, we had just gone to her gym class and I had a little time to spare before I had to pick Kayla up from preschool. It wasn't fun but she did great and we went on with our day. When he called that night, I didn't even know what to say. I didn't know anything about Leukemia, or much about cancer in general, except that it is bad. I never even watched the St. Jude commercials because I thought it was so sad to see kids that were so sick. He told me we would have to check in to the hospital the next day and expect to be there for at least a week. He had called ahead for us and had already spoken to the Oncologist, whom he had worked with during his residency. I tried to ask questions, but didn't really know what to say. Mike was still at work so I had to call him and tell him to come home through my tears. It all seems surreal now. That week in the hospital seemed like an eternity. We learned more in 48 hours than we ever thought we would know about blood or cancer or surgeries. Our pastor called a wonderful doctor from our church and she came and met us at the hospital and helped answer our questions and even met with the oncologist with us to help get some answers. It was awesome the way that our family and friends rallied around us, stepping in wherever we needed help. We didn't have to worry about Braden and Kayla because my parents were with them and we had people taking turns driving Kelsey back and forth from the hospital 3-4 times/day so she could nurse. It was comforting to know that we didn't have to worry about the other kids during a time when we were worried so much about Brooklyn. One of the hardest parts about that week and that time was that she seemed totally fine. So, it was like we were taking a healthy kid in to the hospital and making her sick. She was so amazing throughout everything. She never questioned why we were there or why she had to do all of this stuff. It was all so confusing, trying to decide if she should have a broviak or a port, whether she should be on the "study" version of treatment, how she should take her medicine...these were all things we had never thought about before and didn't know the right answer. We learned though that because of all the research that has been done and trials and tests, the cure rate for ALL is almost 90%. That means it goes away and never comes back. I never thought I would be thankful for the kind of cancer my daughter has, but I am. We have been so incredibly blessed by so many people this year. The support from our families has been wonderful and we are so thankful for them. The way that our friends have rallied around us with prayers, time, meals and gifts as well as two amazing events in Brooklyn's honor has been more than we could've ever dreamed of.  We are so humbled by your support and thankful for your help throughout this past year. I was looking through pictures the other day and it almost brought me to tears to see how bald Brooklyn was this summer, and to see how big she got during her first month on steroids. She has been through so much this past year, but to see her now is amazing. You wouldn't even know she is still going through treatment. Sure, the steroids that she's taking again this week still stink, make her irritable and cause her to wake up all night long and we still have to be extra careful with germs and fighting infection, but overall, she is doing so well. Her sweet spirit and amazing fight are proof that God is holding her through this time, He is holding and helping all of us.

Sunday, January 22, 2012

Let Them Be Little


Have you heard that song by Billy Dean? I heard it again recently and it's one of those that always makes you cry. It says "Let them be little, cause they're only that way for awhile. Give 'em hope, give them praise, give them love every day. Let them cry, let them giggle, let them sleep in the middle, oh but let them be little." If that doesn't make you stop and think, I don't know what will. It's so easy to get caught up in the day to day of life that you don't take the time to let your kids be little. You don't get on the floor and play or make up stories together or jump on the bed. How many times have I caught myself saying things I never thought I would say? "Stop blowing bubbles in your drink. We don't sit on the counter. Do I look like the garbage can? There's no spitting in the car!" Really- that last one is a frequent one believe it or not. I was talking with someone recently who had a friend who's kids had all gone off to college and she was having the hardest time adjusting to not having her kids at home anymore. I know that time sneaks up on us faster than we expect. I don't want to look back on the time when our kids were little and wish I had spent more time with them or played more or imagined more. I am totally guilty of that at times though. It seems like I need more hours in the day to get everything done, so it's easy to just let the kids play together while I clean or cook or get organized. Things can get so busy that I can expect too much from our little kids, we want them to act like a "big kid", tell them we expect more from them, want them to be more responsible. But they are going to have to do that their whole lives. They have so few years when they don't care what other people think, they don't have to worry about school or work or responsibilities. We should cherish that time for them because they don't know that it's so limited. We should sing out loud and dance in the rain and laugh til it hurts. You would think I would have it all figured out now especially since Brooklyn has leukemia, I should cherish each day and just have fun, but I don't. She was on steroids again a couple weeks ago but it seems like the effects of the drugs lasted longer this time. She has been particularly feisty and gets angry easily if she doesn't get her way. She woke up every night again during her week on steroids and then for the next few nights afterwards. She has slept through the night the last few nights though so that has been great. It seems so logical that we should laugh and dance and play with our kids all the time but when you're in the midst of a day full of whining and crying and fighting, it can be easy to forget that you want to sit and play with your kids while they're young. Our kids are really so good though and we are so blessed to have them. I asked our kids, individually, a couple months ago if they knew we loved them and they each (except Kelsey of course) said yes, we tell them every day. That is what I really want. I know I may not always play as much as I should, but I do always want them to know they are loved. I was folding laundry the other day and Brooklyn started jumping on my bed. I immediately started thinking of the monkeys jumping on the bed song, but before I told her to stop, I saw the look on her face. She was having the best time in the world. Of course I don't want the kids to get hurt by falling off the bed or hurting themselves somehow jumping, but how much fun is it to jump on a bed? Can you remember the feeling of jumping and feeling like you're flying through the air before landing again on the springy mattress & taking flight again? You just don't do that as an adult. We don't take the time, we don't want to mess up the bed, and we don't want to get hurt either. But I didn't make her stop, I wanted her to feel that joy, that elation, that feeling of pure fun. She has been through so much this last year that she should get to bounce on the bed every day. Seeing her joy helped me to remember that I want that for my kids, I want them to enjoy being young, not have to worry about the worries of life or what lies ahead. I am going to do my part to "let them be little" for as long as possible.

Thursday, January 12, 2012

New Year

Happy New Year! We had a wonderful trip to Southern California. The house we rented in San Diego was great & had a lot of land with it, so the kids had a blast running all around, playing soccer and basketball, climbing in the tree house and even trying to get wet in the pool (they didn't make it much past their knees because it wasn't heated!) The weather was beautiful and we were outside enjoying the sunshine every day. It was so much fun to visit with our friends again and to all relax for a few days together. We spent last year together in Tahoe and it was so much fun, but especially shocking when we called everyone a month after we had all be together to let them know that Brooklyn had been diagnosed with Leukemia because she had been totally fine during New Years trip. It was good that we got to all be together again and for the kids to get to play and see that she is doing well. It was also a miracle that no one was sick! It is not very often that you can get that many kids together in one place, especially during the winter months, and have everyone be healthy! The kids all did little fireworks on New Year's Eve and drank some "parkling tider" to ring in the East Coast New Year & then were off to bed. They all slept pretty well because they would play so hard during the days. Our drive home was much easier than the drive down, so that was good, but it was tough to get back into the swing of things last week. It kind of felt like we were dragging all week. Braden had his first basketball game last Saturday and it was really fun. This week has felt like we've been able to get back into more of a routine and back on our schedule. Monday morning we met with Brooklyn's oncologist and then she had chemo in the infusion room again. She is back on steroids this week so that always seems to make her not feel great. She has been doing well at school though, not as tired as she is sometimes and looking forward to going to see her friends and teachers. She was the "snack friend" today and was so excited to bring in powdered sugar donuts and grapes - two of her favorite things lately. It was definitely a little different than the snacks they usually have at school, but the other choice would've been salami, and I didn't think the kids would go for that. :) It is tough to see the toll that all this medicine is taking on her little body. During the one week per month that she is on steroids, we have to put a thick pad inside her diaper when she goes to bed because if we don't she will leak all over the bed. But the other three weeks out of the month, she could probably wear underwear to bed because her diaper is usually pretty dry. It is so hard because it's something that she can't control. I was thinking how hard it would be to not be able to control what is happening to your body; to want to do something, but not be able to because of the affects the medication has on your organs. I was getting Brooklyn ready for bed recently and another little kid her age was nearby and asked why she had to wear a diaper to bed. Of course, because the kid was three, I said she wore it just in case she needed it during the night. But I'm thinking, well, it's not really her fault, she can't ever get in a routine or sleep potty train because her system is so screwed up, and I don't know if it will change at all for the next year. Hopefully she won't need to wear a diaper to bed when she is almost 5, but who knows? Will her body get used to the medicine and know to wake her up to go to the bathroom or will she adjust so she won't have to go so often during the night or will they have to increase her chemo as she ages so it could have the same effect? I had no intention of talking about peeing so much, but it is just an example of how hard it is on her body to be taking all of this stuff. The steroids also make her wake up more often at night. Mike and I each had to take her back to bed 2 or 3 times last night throughout the night. We were hitting the snooze button for over an hour this morning because we were so tired!! She usually gets back in a routine of sleeping well through the night again a couple weeks after taking the steroids, but then a few days later, she starts them up again & the sleeplessness returns. However, even while complaining about the medication, I am so thankful for it. I think about how life was 100 years ago, and a child with Leukemia would've probably just been considered "sickly" and would most likely not live very long. I am so happy that she is able to take these drugs that are going to cure her. I want to hear her begging me for "just one more" donut over and over, I want her to be able to ask me for 5 more "petaronis". I want her to celebrate 90 more New Year's Eves. Another positive thing in all of this is that although it is tough that she is so young because she isn't able to tell us exactly how she's feeling, it may actually be a blessing because she may not remember much of this time. I don't remember much from when I was 3 years old, so maybe she will not have memories of surgeries and doctors and feeling terrible. That is what I'm hoping for. Our prayer for this year is definitely for health and safety and I know we will have lots of fun and laughter to carry us through.