Wednesday, October 26, 2011

So Happy Together


Tuesday morning the doctors came in and told me that the results had come back positive for the varicella virus. They didn't have a definitive answer yesterday or today as to whether it is chicken pox or shingles, however since they are both a strand of the varicella virus, the treatment is the same. Brooklyn has been taking an anti-viral medication since Monday which helps the virus from getting too bad or spreading too rapidly and also helps her recover faster. She has consistently had a fever of over 100 until today so she has been pretty wiped out. She hasn't been itching her leg too much, but will start to scratch after her benadryl wears off. She has also complained that the bumps hurt, so the tylenol has helped her with that too. Tuesday was a long day after a restless night of sleep Monday night. She handled everything really well though. We painted again and we covered almost every inch of wall space in our room with the pictures she painted. It was a fun way to decorate the room and bring some joy into our day. Mike had to work all day and then went home to have dinner with the kids and hang out with them for awhile before he came to the hospital. Brooklyn was so happy to see him & loved the pictures Braden and Kayla had colored for her. They really missed her being home with them. Mike stayed the night with Brookie so I could go home to see the other kids since I hadn't seen them since Sunday. I got home after they were in bed so I only got to see them for about an hour this morning before I went back to the hospital, but it was great. Kayla gave me about 100 hugs and said, "I haven't seen your smile until a long time." :) It is such a different experience being in the hospital this time. When we were there in January, it was kind of like time stopped for us. I wasn't aware of anything outside the hospital walls. It was all so shocking and scary and there were so many decisions we had to make so quickly, it was like an emotional whirlwind. I knew that our family and friends were taking care of the other kids, and they were able to come visit us at the hospital almost every day. We definitely had not planned to spend the first half of our week in the hospital this week, but it was a different feeling this time. We were definitely worried and concerned about Brooklyn being sick and wanting her to get better as soon as possible, but it wasn't as scary or emotional as it was in January. Once the doctors said that it was varicella and they felt that it was under control and they weren't worried about her, it was easier to relax. It is definitely not where I want to hang out on a regular basis, but I know some of the nurses now so that is nice and I know how to check out movies for us to watch and I know where the water machine was - simple things but things that help make our stay more bearable. It was also weird because I was so much more aware of what was happening in our regular life. My mom has been awesome and stayed at our house to watch the kids and take care of everything for us while we haven't been there, but there were still things on my mind to handle. Braden has a book report due this week and a poster due and I had to arrange for pick ups and drop offs for school and soccer. My mom has handled most of it, but we have had some really amazing friends helping us too. It is so nice to know how willing people are to help. After I took Kayla to school this morning I went back to the hospital so Mike could go into work. When I got there they were both pretty tired because Brooklyn kept waking up saying her legs hurt last night. I had missed the doctor coming in, but he told Mike that she was going to need to stay another day. I had figured that might happen, so I had packed extra clothes for us just in case. Our home nurse, Heidi, was working at the hospital today so we got to have her for our nurse, which was so nice. She talked to the doctor some more about how Brooklyn was doing and he ended up saying that we could go home this afternoon. We have the anti-viral medication to give her as well as tylenol and benadryl if she needs it. The rash is so much better today than it was yesterday, so we are hoping that it continues to improve and doesn't spread. Heidi is coming out tomorrow morning to check on Brooklyn and make sure that everything is getting better. I was so happy that we were going home! She seemed to be  feeling better & her fever was down, so she was much more active today and wasn't loving being cramped in a hospital room so she was pretty feisty. I could tell she was pretty tired too and she finally took a nap. When she woke up, Heidi unhooked her IV and I gave her a shower and we got outta there! In typical Frank fashion, we had an entire wagon-full of stuff to take down to the car with us when we left. :) Most of it was the pictures she painted and our snacks we accumulated over 3 days. She was so excited to get home to see her brother and sisters & it was so great to all sit down together for dinner tonight. We are hoping that Kelsey doesn't come down with chicken pox since she hasn't been able to get the vaccine and that Brooklyn heals quickly and is feeling better & ready for trick-or-treating Monday night! We also haven't talked to our main Oncologist about this little hospital stay yet, but Brooklyn has been off her chemo since we went in Sunday night, and will not start taking it again until she is done taking the medication for this virus, so we hope it doesn't set back her treatment plan too much. Thank you for all of your continued support and prayers for our family. :)

Monday, October 24, 2011

Tough Cookie


It has been a long week for our little Brookie. Last Monday we went to see her Oncologist. He said everything was looking good and she is right on track with her treatment. I took her to the infusion room after we met with the doctor and she got her monthly dose of chemo through her port. It was amazing because it is the kind that they just "push" in rather than putting it in an IV drip at a slower pace, so it only took us about 30 minutes. I asked the nurse if that was the kind we would get the rest of this maintenance time and she said yes. It was so weird to think that we won't have those long days at the infusion room anymore. It is like we are running in to a store or running an errand - it is done so quickly. In fact, it's quicker than a trip to the store! The type of chemo she got is the kind that can make her legs ache and that made her walk on her toes in the past, so we knew that was something to watch out for. Tuesday she said that her legs were itchy before she went to school, but they looked ok and she was walking fine so we figured that was her way of describing that they were hurting, so we rubbed them and it seemed to make her feel better. Her teachers rubbed them a little bit at school too, but overall she was feeling pretty good. She had to start steroids again Monday night too. Since she is only on them for 5 days per month now, she never really gets to the super hungry stage, which is a good thing because all she wants to eat these days is salami, gogurt and candy. Suuuuper healthy! Throughout the rest of the week she would say her legs were itchy sometimes, but she played with the other kids and was acting pretty normal. Her emotions did seem to get pretty dramatic as the week progressed. She would be happy one minute and then yelling the next. It had to be either from all the drugs she is taking or maybe she had the beginning of a virus and it was making her feel bad because she would get worked up to a point that she would end up crying. When she gets to that point, I usually just hug her until she calms down. It is hard to see her get so crazy from all the medicine. We had a fun family movie night Friday night at home. It was great to just all hang out together and relax after a busy week. Saturday we had soccer games for Braden and Kayla and then Kayla went home with my parents and Braden went to Jeanne & Jack's. It was crazy for us to have just two little ones at home! Although, as Mike pointed out, we didn't have the quiet ones. :) We had friends over for dinner and played games after the girls went to bed. Brooklyn seemed especially emotional, acting happy then mad then sad. Sunday morning when she woke up she had a big rash all over her leg. She had had a couple bumps on her leg last Monday morning but they were really nothing concerning. I thought maybe she had scraped her knee or it was just a couple little random bumps and they hadn't changed all week so we didn't think much about them. However, yesterday when she woke up, it had spread all around her knee and up her thigh. We thought we would just wait and see how it acted during the day but by the evening it had gotten considerably worse. We called the on-call doctor and I sent him a picture of her leg and he thought it was strange looking but that we could wait to get it looked at until Monday morning. However, when I went in to check on her at 10:00, she had a fever of 102. We called the doctor back and knew that we had to go into to the ER. Our good friend Talacey came over to stay with the other kids and Mike and I went to the hospital. We had to stand and wait a little while until we got back into a room and Brooklyn was not feeling well because of her fever and she kept saying her rash hurt. They did a chest x-ray to rule out punomea and then did a blood draw from her port to see if she had an infection in it. New protocol also requires that she gets blood drawn from another spot to see if she has any kind of infection in her body at all, so she had to get poked in her hand but that didn't work, so they drew blood from her arm. Then the doctor tried to cut open one of her bumps to get a sample to see what exactly the rash is on her leg. She was sleeping while he did it so it didn't bother her much. Then they told us that she was going to have to get checked into the hospital until we had the results back from her labs. Mike went home so he could get the kids ready for school in the morning and Brooklyn and I got upstairs a little before 7:00am. Apparently the sample they took in the morning from her rash wasn't good enough so a doctor had to come in this afternoon to get another sample. She cut open one of the bumps on her rash and poked a stick in it to get a sample for the lab. It was really painful and Brooklyn was crying and asking the doctor to stop & not poke her with the stick again. It was so sad. She has been so brave this whole time, she has had to continually take medicine - tylenol for her fever that keeps coming back and benadryl to help with the itching and pain of the rash. She has given herself the medicine, even when she doesn't want to and luckily I brought gumdrops to reward her bravery. :) We are in isolation because they don't want to expose any of the other kids on the floor to chicken pox just in case that's what she has. It is nice because we have our own room, but a bummer because Brooklyn can't leave the room at all. They brought in some paints and an easel for her to color with today though, so that was really fun, we decorated our room with all of the beautiful paintings. They expect us to be here until at least Wednesday when we get the results back from all of her cultures. Thank you for your messages, your thoughts and prayers, especially while we are in the "hopsidal."

Sunday, October 16, 2011

The Wish


I haven't written for so long! I don't have a good reason, Mike and I didn't get sick, we weren't out of town, I don't know, I guess we've just been busy. We've been having fun over the last two weeks. Brooklyn has been feeling really good and doing an amazing job taking her medicine every day. She has been really into asserting her independence lately. That's a nice way to say she is being stubborn and not listening. :) I'm not into talking back and defiance, so there have been some long days, but I also know that she could totally be feeling crappy from all the medicine she has to take. Her hair is really starting to grow back and it is the softest thing you've ever felt. She is so cute and looks great as it's growing in. We almost have to comb it in the morning because she gets a little bit of bed-hair when she wakes up. :) The kids have picked out their costumes for Halloween and when you ask Brooklyn who she's going to be she says, "Mapunzel, let down your hair." She is going to be the cutest little Rapunzel!! She got to spend the night at my aunt and uncle's last weekend. Both Braden and Kayla have gotten to spend the night there on their own and they enjoy it so much. They get to go to the golf course and then go to dinner and play games. It is so nice that they each get to have one-on-one time with their Nana & Bumpa. We weren't sure if we should let her have a turn on her own yet or not. We haven't spent much time away from her since January and worry about her getting sick. However, her blood counts have still been okay and she's been feeling good so we figured it was a good time for her to go. And Jeanne and Jack only live 20 minutes from us, so she wasn't too far away. She had so much fun. It is hard because I want so badly for things to just be normal. I want her to feel good all the time. I want to think that she's talking back just because she's 3 and not because she is feeling nautious or lethargic from chemotherapy. I know that things aren't that way now though and I am actually so incredibly thankful for how good we are doing. She is getting to go to school, she doesn't have to go to the doctor or the infusion room as often, and we are able to go out and do things in public. We are extremely blessed. We haven't had to go in to the hospital for an extended stay and as a whole, our family is doing really well with everything. Monday, I had to take all the kids to the pediatrician because Braden had his yearly physical. There was some kind of issue going on with another kid so the 5 of us waited in the room for the doctor for almost an hour. We read every book they had, we sang songs, and we played Simon Says. The doctor felt bad that we had to wait so long, so he let us get our flu shots instead of having to come back on their "flu clinic" day. The kids weren't thrilled that they had to get shots because I hadn't warned them, but they did great. It was amazing to see how tough Brooklyn was, she didn't even flinch. They helped me pick out a baby present after we were done and then we went right to Baskin Robbins for a treat. They deserved it! Thursday, Brooklyn's preschool had a field trip to the pumpkin patch. Kelsey came along with us and it was fun riding on the trailers out to the field to pick our pumpkins and getting time to play with our friends. We had fun this weekend too. We had soccer on Saturday and after church today we went to Napa. Mike has to work there about once a month, so we went along with him and had lunch together and then I took the kids to a couple parks in the area. It was such a beautiful day, we had a great time. It was fun to get out of town and spend time together as a family. I was thinking as Brooklyn was climbing one of the play structures and running around after her brother and sister that it is so wonderful that she is able to do all of that with all that she has been through. At one of the parks Brooklyn picked a flower and said, "I wish to be happily eder after. The end." and then tried to blow it like a dandelion. That is what I wish too, for all of us.

Monday, October 3, 2011

Sharing


Today is the first day since last Monday that someone hasn't thrown up. That's right, we cannot be accused of not sharing! We shared the stomach bug all around! Kayla stayed home Monday - Wednesday and then Thursday everyone seemed fine, all the kids went to school and it seemed like we were on the mend. But then Braden got it Friday morning, Brooklyn got it Friday night and Kelsey Saturday night. What is that saying? A family that pukes together stays together? Oh, that's not it. :) Luckily Mike and I seemed to avoid it, so hopefully we won't have any surprises in the next few days! Through this week, I have become thankful for things that I never knew I would be so thankful for. I am super thankful that Mike and I haven't gotten the bug, I am also super thankful that this strand of the flu didn't come with a fever because that would've sent us to the hospital with Brooklyn. I am also very thankful that I have a good washing machine to wash all the towels and sheets we have been going through! Thursday Braden had a minimum day at school so I wanted to do something fun with the kids since I thought everyone was healthy. It was a hot day so we walked across the street and went to the splash park. We used to go to the that park before we ever moved here because it is really fun and there is a great water area for the kids to play. However, ever since we've lived here, walking distance to the park, we haven't been able to go. When Brooklyn had her Broviak in, it wasn't something we could do because her dressing couldn't get all wet without having to change it right away and so we just never went this summer. It was so much fun going on Thursday because we were almost the only ones there, it was like we had the whole park to ourselves. It was Kelsey's first time at a water park and she loved it! We had a pretty mellow weekend since everyone was recovering or still feeling sick. It was nice to slow down a little and not be so busy actually. This morning Brooklyn's home nurse came over to check her blood counts. Everything came back good so that is great news. She hasn't been eating much, but I think that is because her stomach is still hurting a bit. She has been doing great taking her medicine every day though, so that is truly a blessing. I'm sure she gets tired of having to do it everyday, I feel like it's a lot just remembering what she takes on which days. Hopefully everyone will be feeling great by the end of the week and we will all be back to our "new normal." Thank you for your continued prayers for our family.