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.

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.

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.

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.

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.  

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. :)