Fun at Home

We had a bit of a slower week after Monday and Tuesday's visits to UC Davis. Wednesday we actually did go to the pediatrician just for a checkup for Kelsey, but I also found out that Kayla's heart results came back all fine and Brooklyn didn't have a bacterial infection, so it was all good news! We went to Jamba Juice after the doctor's visit for a yummy treat. Brooklyn didn't drink much of her Jamba but ate about 1 1/2 pretzels. She is so funny these days with what she is craving. She is liking breads, but only eats the soft parts - so with the big pretzels, she peeled off the outer parts and only at the insides, she does the same with her crescent rolls and garlic bread. I don't know if the texture of the harder crust bothers her or if she's just being picky. Either way, we are pretty much giving it to her however she likes it these days so that she is getting some food in her. Thursday and Friday were nice because we pretty much just hung out at home. We built a fort in the living room and the kids played and read books in there for a long time. Brooklyn had fun dressing up in princess clothes since we were just hanging out around the house too. I went to Costco Thursday with just Brooklyn, because my parents came over to help with the other kids, and a sample lady was so sweet to her. She complimented her on her princess dress and just spent time asking her questions and talking with her. She asked me if Brooklyn is sick and when I told her that she has Leukemia, she asked her name and if she could ask her church to pray for her. It was so touching that she was so caring and wanted the best for Brooklyn even though she had never met her before. That night, we got to go swimming for the first time since she had her port put in. It was so great. It was amazing to be able to just put her swim suit on and let her play. We didn't have to wrap her all up in "press and seal" and we didn't have to change her dressing as soon as she got out. It has been so nice to not have to worry about making sure we flush her tubes every night and keep her dry all the time. If she gets wet in the sprinklers while we're on a walk or washing her hands at the sink, it's okay, she doesn't have to have her dressing changed or change clothes. The port that she has now is still a little sore, especially if we grab her to pick her up right at that spot or if she bumps into something right on her ribs, but it really is so much better overall. Today, we went to the golf course to watch Braden and Kayla play in the junior/member tournament with my parents. They both did a great job, (and were so excited to win trophies!) and it was a beautiful day on the course. I can tell that Brooklyn can't wait until she gets to play. She loves running all around the course and she is pretty good at hitting the ball too. We have only one full week left until school starts so we are going to make sure it's a fun one! We don't have any doctor's appointments until she has chemo on Friday, so hopefully we won't make any unexpected trips. :)

Hospital Visits

We actually had a pretty mellow weekend! Mike and I got to spend the day with Braden and Kayla on Saturday and my parents took Brooklyn and Kelsey back to their house. We had a "swap" day where the kids were the parents and we were the kids. They got to make all the decisions on what we did and where we went, and Mike and I got to whine a lot. :) It was fun to get to spend the whole day with them, especially since they are starting school soon. It was good too because I feel like they haven't gotten as much of our time lately since we always have appointments to take Brooklyn to or are busy taking care of her & all her medicines. We all had fun. Sunday we went to church and then had some friends over for dinner. Apparently since we had a couple of days that were slower, we just had to mix it up and get crazy again! About 4:30 Monday morning, Brooklyn called me into her room to lay with her and when I got in bed with her I could tell she was hot. I took her temperature and she was about 103. I kept taking it over and over hoping that my eyes just weren't focusing correctly because I was tired. I got her some ice water to drink to help cool her down and finally went to wake up Mike about 5:15. We called the doctor on call like we are supposed to when she has a fever and he wanted us to take her in to the ER. I was so reluctant to because she had never had her port accessed before and so I was worried about how she would do with it since we would be in the ER and not with a nurse that we know. Her home nurse was supposed to come over later in the morning to take her blood counts and she had made a little doll for Brooklyn to show her how the port worked. My other hope was that since it was so close to 8:00am, maybe we could just go in to the infusion lab and they could take care of her there (they access ports all day long and we are there so often, we know the nurses and I knew Brooklyn would be comfortable there.) But, the doc said we needed to go to the ER, so I packed up clothes for all the kids, called my parents at 6:00 and we met at the hospital and they took the 3 back to their house. God blessed us with an amazing nurse who was so great with Brooklyn and she did a great job with accessing her port and taking care of her while we were there. We have some numbing cream that I put on the site before we left home so I don't think she felt very much at all. To access her port now, she gets poked with a needle that is connected to some tubes just like the ones that used to be coming out of her chest. They can draw blood samples and give chemo and medicines through the tubes and then they take the needle out when she's done. The doctor was worried that she might have an infection since she had a fever and had just had the port put in a few days earlier. They took blood in the ER and gave her some antibiotics and her fever actually went away on its own. We got to leave about 12:30 and went home to pick up some stuff I had forgotten and then went out to my parents to watch Braden and Kayla play in their junior golf championship. Kayla played 1 hole and Braden played 6 and they both did a great job. Brooklyn felt pretty good all afternoon even though she had been through so much in the morning. All the kids (and adults) were really tired last night since we had gotten up so early. This morning, Brooklyn and I went back to the hospital for a spinal tap and then over to the infusion lab for chemo. She was really upset to leave this morning saying she didn't want to go to see any doctors or nurses, but by the time we got to the surgery center, she was in her normal happy mood, laughing and talking with all her favorite nurses. I am so thankful for the doctors and nurses that are so good with these little kids that have to go through so much to fight these crazy diseases. They make life for all of us a little better while we are going through this process.

Port Time!

 
I'm pretty sure this week was actually 2 weeks smooshed into one, it seemed like a long one! Monday went well - we went to the infusion room to get her labs drawn and then met with the oncologist. We got our schedule for the next two months and were happy to see that we don't have to give any chemo at home! She just will have to do her antiobiotic every weekend like she always does, so that's not bad. It was also great to hear that her counts went back up, they had been pretty low, but her ANC (her ability to fight infection) was a high number again, so that was awesome. Starting this next Tuesday though, she will go in for chemo every 10 days. It is the kind that made her legs hurt in the past, so I'm hoping that it won't affect her in that way again. We ended up just kind of hanging out in the building after that appointment and then met the surgeons at 1:00. They explained the procedure for taking out her broviak and putting in the port. You could tell it was very routine and no big deal for them, but the idea of it made me nervous because she had to be put under anathesia more deeply than she is for her spinal taps because the surgery takes longer. After that appointment, we went to the golf course to meet up with the rest of the kids for their junior golf and then had dinner at my parents' house. Tuesday we stayed home to get ready for our good friends who came to visit for a couple days from Texas. Mike Coolbaugh and Mike (Frank) played on a few teams together in baseball and became best friends. After Mike was killed by a foul ball in 2007, we helped organize a golf tournament in San Antonio to honor his life and help his family. It is so great to see the Coolbaughs every year and Braden especially loves it because the boys all just play baseball together constantly. You can go to www.coolbaughmemorial.com to learn more about the tournament. Thursday morning, we had to be to the hospital by 8:00 for Brooklyn's surgery at 10:00. She was tired and a little mad that we wouldn't give her anything to drink, but in pretty good spirits. We went back to the pre-op area and she was making all the nurses laugh, taking pictures of them with my phone and playing hide and seek in her bed. It was hard when they wheeled her away, because I usually go with her into the operating room when she gets her spinal taps. The surgery took about an hour and sitting in the waiting room with all the other anxious parents made me again realize how crazy it is that there are parents waiting for kids going through surgery every day, that I never even thought about before being one of them. I am thankful for the doctors and surgeons who do such amazing things every day, but it is hard to be waiting in that room to hear how things went with your child. Brooklyn's surgery went great. They were able to use the same tubes inside her body to hook up to the port, which was great because it meant they didn't have to do another incision to put more tubes in. She woke up happy and was anxious to get home to have petaroni pizza, apple juice, milk and "those little balls" (Kix). She is pretty sore from the surgery so we just had a day at home yesterday which was nice. She woke up a few times last night because she was in pain, but she should be feeling better today. She has to keep the incisions dry for about a week, but is very excited because, as she says, "now I can go wimming wheneder I want." :) We are excited too; it will make everyday stuff so much easier for her. She won't have to get her dressing changed, we won't have to flush her lines every night and we won't have to worry about her shirt getting wet all the time. She is also excited to tell people her hair is growing back. :) She is such an amazing little girl.

Here comes the sun

Even though I haven't posted anything for awhile, I feel like we have slowed things down a little lately, so it seems like I would've had time to write doesn't it? I don't know, the days seem to fly by lately, which is good because it means that we are closer and closer to Brooklyn getting cured and finishing her treatment. A couple days after the Pettigrews left, Mike's parent's came to town for the weekend. It was so good to see them and the kids were thrilled to have them here. We stayed home for the most part and it was nice to slow down a little. Diane is feeling pretty good and the kids loved playing with Grandpa and Grandma all weekend. She starts chemo tomorrow so I know she would appreciate your prayers to help her through her treatments. Brooklyn has had an easier week this week. Monday night we gave her her last chemo pill for this round and she woke up super excited Tuesday morning that she didn't have to take any medicine for the rest of the week. Wednesday, Mike's cousin Rachel came to town to help us out for the week. It is so awesome to have her here, the kids are loving to wake her up every morning and having her around to play with them all day. I got to go to Costco and the grocery store without any kids with me one day, and that was like a little vacation in itself!! Mike and I even went out on a date Friday night, it was great to have some time to just hang out together without all the kids around. I have been thinking a lot lately about how much this process has changed our lives and our view of things. I would have never ever chosen for Brooklyn to get Leukemia. There are a lot of things that have happened in my life that I would not have chosen to happen. But I realize that God has allowed them to happen for a reason, and in a strange way, I am thankful. I really never have considered myself to be a judgemental person. I know it's not my place to judge others, but in reality, we all do it to some extent at some point. While Mike and I were out the other night, I realized how it is just something that I don't want to do anymore. I was looking around at other people, thinking "what's their story? or they look weird..." and then as Mike and I were talking, we talked about how we really don't know anyone's story. I thought about my friend whose husband was killed unexpectedly and how heartbreaking it was and still is for her and that I wouldn't want anyone to judge her if she was out one night with some friends. And I thought about our friend whose husband is on life support and how just a few months before they would go out on dates every week, and how drastically her life has changed in such a short time. And I thought about people looking at us, and that they had no idea what we are going through every day and that we need a little break every once in a while. I thought about my friend who just found out her son has some health problems. It all gets to be a little too much sometimes. What a fun date I am huh? Geez! Next time maybe we'll go to a movie so I stop thinking so much!! The only thing that gets us through is our faith and confidence that God's hand is on us every day. This part of our life is not easy, but we do have such joys along the way. Brooklyn has been learning to swim without her "woaties" and is so cute because I have to keep reminding her to close her mouth while she swims because she is smiling the whole time she is under water. She is just like her brother and wants to make sure everyone is watching her before she goes. We also got the great news this week that our nurse's son Zach's tumor is 99% gone! Such awesome news! And my cousin Nate is cancer free! So wonderful!! I really never knew very much about cancer before this year, and it has descended upon us like a black cloud; but the cloud is lifting and we are starting to see the sun again. We meet with the oncologist tomorrow morning to get our next schedule of treatment and then meet with the pediatric surgeons in the afternoon to discuss Brooklyn's port surgery this week. Good times are heading our way and we are learning to enjoy every little one. 

4th Fun

We have had a fun filled week! Our awesome friends the Pettigrews came to stay with us over 4th of July weekend. They live in Scottsdale so the 100 deg weather we have been having is nothing for them! :) They have 3 kids the ages of our oldest 3 and they all played together fabulously! We swam a lot, played a lot of baseball, went to the rodeo and the zoo and the park and that was all before Monday! We were hoping to tire them out so they would sleep well at night but in actuality they wore us adults out!! Monday, we all went up to my aunt and uncle's neighborhood for the 4th of July parade they have there in the morning. All 7 kids as well as Tracy and my mom, dad, aunt and I rode in my dad's old Cadillac for the parade. The kids had a blast throwing candy out to everyone. They were little superstars! We came back home to swim and play and BBQ & the adults decided we should have a flip competition off the diving board. Let's just say I didn't win, but not for lack of trying. :) We went back out to watch the fireworks then & the kids did sparklers. They were pretty wiped out by that point; we all were! Tuesday Brooklyn's nurse came over to draw blood and give her chemo again. Then we went with my mom's group to take a tour of the fire station. The kids loved it & all got fireman hats to take home. Tuesday afternoon Braden and Kayla started junior golf at my parents' club. They had fun and Brooklyn came over at the end and was excited to walk along the first hole with her putter. Wednesday, Brookie got chemo again and we just stayed home to clean up the house a little. Yesterday, Brooklyn had chemo in the morning and then had to go to the infusion lab to get some blood. They expect all the chemo she has been getting to knock down her blood counts a little. Hopefully it will make her feel a little better. She hasn't been eating hardly anything at all for the last week and is as feisty as ever. We have been giving her the anti-nausea medicine but she will throw up sometimes anyway. She hates me one minute but wants me to carry her or lay with her the next. I know it isn't her fault, the chemo is affecting her mood and how she is feeling so much, she doesn't know how to react, but it makes for some long days. Her latest thing is if I tell her no for something she says "fine, then I'm gonna throw up or I'm gonna pee on the floor." The poor thing just doesn't know what to do with herself so we are just trying to make her as comfortable as possible. She is so sweet.