Tuesday, June 28, 2011

Long Days

Monday morning Mike took Brooklyn to get her labs drawn while I took the older two kids to Summer Blast at church. Then Kelsey and I met up with Mike and Brooklyn and had her appointment with the Oncologist. We got our schedule for the next few weeks and even made a date to switch her broviak to a port, so that is great! Her blood counts were actually better than they were last week, so we were good to go for the long one today. After her appointment, we went over to the hospital to see if they had a monitor that the cardiologist wanted Kayla to wear. They had it, but she had to be there to get all hooked up, so Kelsey and Brooklyn and I left and went to pick up Braden and Kayla from camp, then went to Kayla's swim lesson. My parents met us there and picked up the kids when it was over and took them home so just Kayla and I went back to the hospital. I think my car could get there on auto-pilot now! They showed us how to use the monitor for the next couple weeks in order to record what her heart is doing when she says it hurts. We got home around 5:00 and then Mike and I went to a dinner last night that supported a friend of ours who also has cancer. It seems like everywhere you turn someone has cancer these days. It is hard to see so many families suffering because of this disease. This morning, Brooklyn and I got to the hospital at 8:00 and she had her spinal tap at 9:00. We had to pick up a prescription at the pharmacy and then headed over to the infusion lab at 10:30. We got her all hooked up and learned that it wasn't actually the chemo that took so long, it is the hydration. The chemo today was pretty strong, I guess, so she had to have a couple hours of fluids before they could give her the medication and then 4 hours of IV fluids afterward. She started out watching a movie for a little while, but then got a little hyper and wanted to walk all around the lab. She eventually started using her IV pole as a skateboard. I would hold the top and she pushed off with one foot while the other foot rode on the base of the rolling pole. It was pretty funny and it was so nice to see her having fun in a place where she always is getting medicine. Once she got her anti-nausea medicine, it slowed her down and she fell asleep. She napped for quite awhile but would wake up every so often to tell me she wanted to go get "tench ties and chocolate milt." :) I sat in the chair next to her and got some stuff done that I haven't been able to do at home because I am never sitting still for that long! We finally left a little after 5:00 and we were both pretty exhausted. It is weird because I basically just sat all day, but it was still really tiring for some reason. For the next two weeks, we have to give Brooklyn a pill every night, which is our favorite thing to do. We crushed it up with juice again tonight, but we usually will let her have a treat or drink some milk after she takes her medicine and with this kind she can't drink milk or have any food for an hour before or after. Fun fun. Our home nurse is going to come to the house the next three days to give Brooklyn chemo, which will save us a lot of driving. Overall, it was a really good day, even though it was a long one. Brooklyn and I had a good time together reading and coloring and playing, but it is also great that it is over. We can check it off the calendar! Thank you for all of the prayers, they really helped us get through the day. The french fries on our way home helped make us happy too. :)

Sunday, June 26, 2011

Fun Days

We had a great weekend again. Brooklyn's legs were feeling much better Friday morning, so I packed up the kids and we went to a little farmers market down the street. It's really close to our house and we haven't been to it before so I thought it would be a fun thing to do in the morning. Brooklyn kept saying she wanted to see the animals at the "tarmer's barn." :) We bought some fresh fruit and salsa and then Kayla wanted to look at the jewelry table. Each of the kids had brought their own wallets just in case they saw something they wanted to buy. Brooklyn really wanted to buy corn. :) So, Kayla was looking at this table of polished rocks that were made into necklaces or little nick-knacks but I told her that she didn't want to pay that much for something that she wouldn't use (she was wanting to get a heart shaped pink paper weight). Brooklyn decided that she wanted a purple necklace but she only had $3 in her wallet. We asked how much they were and the guy went from $40 down to $10. I told her that she would have to save her money up and we could come back and buy one another day. She started crying and saying she wanted one so I was carrying her away and the guy picked up a pendant and handed it to her. He said - "she can have it. I have a daughter. Wear it in good health." I told him he didn't have to do that, but he wanted her to have it. I am sure he could tell something was wrong with her, her little bald head kind of gives it away. It was so sweet of him and so of course I felt like I should buy something from him because he was so nice, so I might have to go back another Friday. It was also kind of tough because I don't want Brooklyn, or any of our kids, to think they can get what they want by crying or throwing a fit. Obviously we are in kind of different circumstances right now, but it is hard to know when to draw the line. Our kids do know that in general they don't get stuff by acting that way, and I know that the drugs are messing with Brooklyn's temperament, but I don't know that Braden and Kayla understand that. I came home and found a chain for her and she has been wearing her new necklace every day. Saturday we had a lazy morning at home and swam a little bit and then went to my parent's house for dinner & to visit with my aunt and uncle before they move to the east coast. Brooklyn loved hanging out with "that guy" - my uncle Ted - and they were buddies all night. They all came over today after church and we had another fun day visiting and playing in the pool. My aunt Debbie played with bend-a-roos with the kids and we found out that they can stick to the wall! Who knew? Tomorrow Braden and Kayla start their week of "Summer Blast" camp at our church and Mike and I take Brooklyn in to see the doctor and get the schedule for the next month. If her blood counts are okay tomorrow, she will get a spinal tap early Tuesday morning and then go to the infusion lab for chemo for 8 hours. She will also have to get chemo Wednesday, Thursday and Friday too - but hopefully our nurse will be able to come give it to her at home. It will be a long week if she is able to start Tuesday. Please pray that she feels well through everything.

Thursday, June 23, 2011

Those Little Legs

We've had a fun few days. Tuesday I took the kids to the zoo in the morning before it got too hot. We had a great time and it was fun to get out. My double jogging stroller had a flat tire so I put Kelsey in the umbrella stroller and ended up carrying Brooklyn most of the time. We were the only ones on the merry-go-round before we left, so that was cool. I stood in between Kelsey on the ostrich and Brooklyn on the kangaroo and they both loved it!! We did some fun art projects and watched movies at home the rest of the day since it got into the 100s. Wednesday, we had a relaxing morning at home and then the kids and I played in the pool while Kelsey napped. It is was so much fun, Brooklyn was loving the water again and Braden and Kayla are getting to be great swimmers. After awhile, Brookie got tired so she came in to watch a movie and the three of us stayed outside and swam a little longer. I was so thankful for the awesome day with the kids and how great it was to just play and enjoy being together. I love summer! Late that afternoon, Brookie's mood started to change though. She was complaining that her legs were hurting from walking so much, but she hadn't really been walking much at all. She didn't want to eat much and then after dinner, they were really sore so I got some lotion and rubbed them for her, which seemed to make her feel better. Even in bed, they were hurting to the point where she would yell out for me to rub them so I ran up and down the stairs quite a few times. It seems that running up and down the stairs is my main form of exercise these days! At one point, she wanted to come lay on the couch with me but once she was down here she couldn't get comfortable and was in so much pain she was just crying. It hurt so much to see her hurting like that. I just wanted to make it all go away. She can't take pain medication because the doctors don't want to mask anything that might be going on inside her, although if it is still bad tomorrow, I am going to call to see if we can give her something. Mike was gone for work last night so I just had her sleep in bed with me and I basically rubbed her legs all night. She was so uncomfortable she just didn't know what to do. Today, she was at the point where she didn't even want to stand on her feet. She was like that when we were in the hospital, and it was important to get her to walk, so I am praying that she is better when she wakes up tomorrow. She is so amazingly sweet even when she is feeling bad; last night while we were lying in her bed, Kelsey was crying downstairs and Brookie starting singing "Hush Little Baby". She always sings for Kelsey when she is upset to try to make her happy again. Today she loved to give hugs and kisses whenever I got something for her or laid by her or rubbed her legs. She has the most amazing attitude. The back and sides of her hair are all rubbing off so she's almost all the way bald now. I was hoping that the re-growth that she had from when so much fell out a few months ago would stay and just continue growing, but it looks like all of it is going to come out. She likes to take the lint roller and get the little hairs off the couch cushions. She loves to be a big helper!  Even through all of these hard days (and nights), I know that the important thing is that we are making it through each day and she is beating this disease. She is such a strong and cute little baldy. :)

Wednesday, June 22, 2011

Brooklyn Frank Foundation Golf Tournament!

We are excited to get information out to everyone about the 1st Annual Brooklyn Frank Foundation Golf Tournament!  It will be held on August 15th at the Valley Hi Country Club in Elk Grove, CA.  Lunch will be before the tournament at 11:30, shotgun start at 12 noon.  We need players, $200 per person.  This includes lunch, dinner, greens fees, cart, warm up range balls and a tee prize.  We also need sponsors for Lunch and Dinner, a Title Sponsor, Tee Prize Sponsor, Closest to the Pin Sponsor and the Longest Drive Sponsor.  All proceeds will go towards medical costs for Brooklyn.  If you are unable to attend, you can become a "Friend of Brooklyn," with a donation over $100 and be mentioned in the program.  Any amount that can be donated is greatly appreciated.  Please visit www.brooklyn-frank.blogspot.com to register as a player, foursome, or sponsor; the buttons are on the right hand side of the blog.  Please e-mail with any questions, or to receive the registration form and/or information pamphlet via e-mail.  (jason.arnold@ml.com or tcpettigrew@cox.net)  Thank you all so much for supporting Brooklyn and the rest of the Frank Gang through this journey!  Tracy P.  

Monday, June 20, 2011

Brave, Bald and Beautiful


We had a great weekend. Saturday was Braden's last baseball game and then we went to the baseball party that evening at a pizza place. We didn't win the game, but the boys played really well and the girls always have fun playing with their little girlfriends on the team. Sunday after church, my parents came over and we all just hung out for the afternoon, celebrating Mike and my dad in honor of Father's day of course too. :) Sunday night, my roommate from college and her family drove down from Portland and stayed the night with us. They have three kids and all 7 kids just started playing together immediately. We all just talked and played in the pool and made dinner. It was a little sad because Brooklyn wasn't feeling well on Sunday and slept for most of the afternoon on the couch. When the O'Sullivans got here and all the kids got in the pool, she was so excited to get in too, but after getting all taped up and sunscreened, she didn't feel good and just sat in a chair next to the pool and watched everyone. It just broke our hearts to see her sitting there instead of playing with everyone. She only wanted to eat corn on the cob for dinner and did a great job, but when she had to take her steroid at night, she threw up right after taking it. So, we had quite a bit of corn to clean up then. :) Yuck! It was just a little bit of a problem because we were out of her pills due to the few times we tried different ways to give them to her and she wouldn't take them, and the times she had thrown up and we had to re-do her dose. I talked to our home nurse and she ordered more for us to pick up today. After we got all the kids in bed, it was so nice to just sit up and talk all night. This morning our home nurse came over and took Brooklyn's blood, I went to pick up her steroids from the pharmacy and the rest of the day we all played in the pool. Brooklyn felt so much better today and wanted to play and swim. Before we got in though, I shaved Brooklyn, Braden and Mike's heads. Brooklyn's hair was just falling out faster than you could move and she had some long pieces that just looked bad and she was actually excited to cut it. I think that made it easier for me. If I think about it, I am sad that she is losing her hair from this medicine, but her positive attitude made the whole experience good. Kelly and I tried to get creative and just trim up her bangs and style them but that didn't work, so we just shaved it all. Brian helped give Braden a "mohawk" so he was super excited about that and Mike hasn't had his hair this short since college, but it always looks good on him. Brookie tried to talk the rest of us into shaving our heads, but I don't think I could pull it off as well as they do. :) She had a blast swimming all around the pool with her "woaties", even jumping in off the diving board. It was great to see her having so much fun and feeling better today. She definitely perks up when other people are around and I think it helps her to feel better. When the nurse called with her blood counts tonight, she said her ANC (her ability to fight off infection) went down a lot over the last week, so hopefully it will level off and not drop any lower. If it does, the chemo scheduled for next week will have to be postponed until her counts are back up. I am so thankful that the hair cutting was a positive thing for us and for the fun day in the sun with such good friends.

Friday, June 17, 2011

Smiling through the pain

This was a tougher week for us. We had a new nurse come over Monday, and she was great - all the kids were home and she gave each of them a prize from her prize box. She is friends with our original nurse Wendi and works at the hospital but is starting to do some home visits to help Wendi while she is home taking care of her son. Zach is doing well, his treatment is really hard, he has to get checked into the hospital for 3 - 4 days at a time to receive his chemo but they are staying very positive. Brooklyn did well with her chemo Tuesday, we took a movie with us and she was glad to watch it, but fell asleep towards the end and I had to carry her out to the car. We started steroids again Tuesday night and it has been hard on her. She is doing much better taking them from the syringe with juice, but it is like she doesn't have control over her emotions and she doesn't feel well. Half the day she wants me to hold her constantly and the other half she is telling me she doesn't like me. She hasn't been waking up at night, thankfully!, but I think it's because she is feeling yucky. She wants to eat, but nothing is sounding (or maybe tasting) good to her. The last two days she has wanted me to tell her, and then show her, everything that is in the pantry, the fridge and the freezer, but then she is not sure what she wants. She has slept a lot the last two days too. It is so sad to see her feeling so bad. I was cleaning today and Braden, Kelsey and Brooklyn were hanging out in the living room and Braden told me to come out and see something - it was a pile of Brooklyn's hair on the carpet. Kelsey had been pulling it out apparently and I don't think it hurts Brooklyn so she didn't say anything. It made me sad because it is really getting thin. It seems like I don't notice it all the time, but there is hair all over our house. We were a little extra stressed this week as well because we had to take Kayla to a cardiologist today. She complains that her heart hurts sometimes, so our pediatrician did an ekg in his office and referred us to a pediatric cardiologist. He was great when we met with him today and he thinks she is fine so we feel a great amount of relief. We are going to do a couple extra tests, but expect them to come back normal. Kelsey has started walking all over the place, so that brings a lot of joy and excitement to our days. Brooklyn loves playing with Kelsey and helping her walk all around, and playing with her seems to be a highlight in her day. We had a lot of fun Wednesday morning when we went to a "mom and me" day at the Rivercats stadium. They had bounce houses and balls and bats and art projects for the kids to do. Brooklyn was once again obsessed with the mascot! She just wanted to hang out with Dinger all morning and even had him sign her hat! Another big highlight for all the kids this week was at Braden's game Wednesday night. We were there longer than normal because it was a playoff game, so all of a sudden the sprinklers came on in the exact area all of the parents on our team were sitting. It was hysterical! You have never seen people move so quickly! Kayla and some of the girls ran around in the sprinklers and thought it was the best night of their lives! It was hard though because I couldn't let Brooklyn run through the sprinklers and get her dressing wet so I had to hold her as she cried and begged to run through them. Our pharmacy hadn't mailed me new supplies when they were supposed to, and I didn't have anything to clean her Broviak site if it got wet. She splashed around in the puddles after the sprinklers went off though and had fun. We have 3 more days of steroids, but no chemo next week, so I am hoping she will start to feel better again. We are looking forward to a fun weekend celebrating the dads in our family. :)

Tuesday, June 14, 2011

Meals for the Franks!

Hello again!  As many of you know, Brooklyn is starting a new round of treatment, which includes full days at the hospital and/or lab.  To help lighten the load for Kristin, we are continuing to do meal sign ups for the days Brooklyn receives chemo.  Please visit the link below if you are able to help out, I know all of the Franks appreciate your generosity!  Thanks, Tracy P.
http://www.signupgenius.com/go/meals487 (Password: Brooklyn)

Sunday, June 12, 2011

Sunshine at Last!

We had a pretty good week this last week. Brooklyn did great with her chemo again Tuesday and we got to go to Braden's game that night. We have loved the warmer weather this week and the kids have loved playing outside every day. Wednesday, the kids had a blast playing in the hose in the back yard. It is always a process to get Brooklyn's Broviak covered up to prevent it from getting wet, but the payoff is always worth it. They had so much fun! Friday, Mike and I got to golf with my parents, which was great. It was nice to just be able to relax and enjoy the day together. One negative from this week is that Brooklyn has been throwing up occasionally. She took her last steroid Tuesday morning, and Wednesday morning the first thing she did when she got up was say, "I don't have to take any medicine today!" It was so sweet and also kind of sad. I wonder how much she understands of this whole process and how much she will remember after it is over. Since she was so excited to not have to take any medicine, we weren't giving her the anti-nausea medicine either, but she seems to feel sick in the mornings. She threw up yesterday morning at Braden's baseball game and this morning as well. I gave her the medicine today and it seemed to help, so we will just have to give it to her for the next week to prevent her from feeling so yucky. Other than that though, she has been doing awesome. We have been much more serious with potty training, and she has done amazingly well. This Tuesday, she has chemo and then starts steroids again, so that my mess up her system a little. She has been throwing some good fits, but I'm just blaming it on the steroids. It's gotta be that, right? :) I am still continually amazed at how well she handles everything and what a positive little spirit she has.  

Sunday, June 5, 2011

Charging Through


What a difference a couple days can make. Saturday morning, Mike and I decided to try a new way (again) to get Brookie to take the steroids. We crush the pills and then add some juice to them and put it all in a syringe. It is great because the juice makes them taste a little better and we can shoot it in her cheek even if her teeth are clenched shut. She still doesn't want to take them, but it is SO much better! It only takes 5 - 10 minutes to get everything in her instead of 30 - 45. And it is way less dramatic, which is good. Mike and Brooklyn went to Costco Saturday morning to pick up some more of her antibiotic, and she threw up as soon as they walked in the door. I don't think it was from the steroids, and luckily it was about 2 hours since we had given them to her, so we didn't have to give them to her again. I think that she must be feeling bad from the chemo on Friday. It is hard though because she doesn't let us know she isn't feeling good, so we haven't given her the anti-nausea meds very often because she always seems to be feeling fine, so we don't know she is sick until she throws up. She threw up again when they got home and again this morning, so we have been giving her the anti-nausea medicine along with her antibiotics and steroids. It's crazy to see 3 syringes sitting next to each other, but we just get through them one after the other, and she has been doing great. It is sad because she doesn't want to take any medicine anymore. I think she is just sick of all of it, even though they don't all taste bad. She will cross her arms and say, "Me not gonna take my medicine eder again." She is so sweet. Her nurse comes over in the morning to get her blood counts, so hopefully they will still be good, this round of chemo could make them go down a little. When I was reading my Bible yesterday, I read these verses in 2 Samuel and they reminded me that God is carrying us through this time. "God is my strong fortress, and He makes my way perfect. He makes me as surefooted as a deer, enabling me to stand on mountain heights." I may not think of this time as perfect, but I know there is a reason we are experiencing it, and God's plan is much better than mine ever is.

Friday, June 3, 2011

Steroids Stink

It was a rough week in the Frank house. After starting the steroids again with Brookie Tuesday night, it has gotten worse each time she has had to take them. It is absolutely emotionally draining. Tonight it took 45 minutes of straight crying and screaming and flailing before we got her to take them. We had to go to the infusion lab again today for Brooklyn to get more chemo. It was one that goes in her IV and it took about 2 1/2 hours or so. She did well, they worry about an allergic reaction with the kind she got today, so it made me nervous. The nurse said it is usually with breathing and it is pretty intense and immediate. She did great though and had no problems. She wasn't into watching a movie and ended up falling asleep in my lap. I talked to the nurse about getting the steroids in the liquid form like we had last time because I figured it might be easier to just shoot it in her mouth instead of making her take 14 pills a day, but apparently there is a shortage of that drug so it is only available in pill form right now. Awesome. She suggested putting them in gummy bears, so I tried that tonight, but she didn't want anything to do with them. Then I tried to put them in a peanut butter cup, but she wouldn't try it. Finally I put yogurt on the spoon with them because the ice cream has been melting because she puts up such a fuss. It is awful. She has learned to cry with her mouth closed so that we can't get the medicine in there. To sit on top of her and force her mouth open while she is screaming and crying and making up excuses why she can't do it, is not something that is for the faint of heart. I cried all day Wednesday. She is doing so well, and I know she has to do this as part of the process, but it is not fun. She hasn't gotten the crazy hunger back yet so that is good, but she has woken up every night because the steroids make her leak in her bed. So, every night we are up changing her sheets. The bright side of this week was that our sweet Kelsey turned 1 yesterday. All of our kids have been really good, but she is truly amazing. Basically half of her life, her sister has been sick and our world has been turned upside down. When we were in the hospital that first week, people just brought her back and forth so she could nurse, and she was always happy and smiling. Now, she is starting to walk on her own and eats all kinds of food and is such a happy girl. I hate that this is all happening and I know it is affecting our other kids too. I'm sure Kelsey doesn't know the difference, but I still feel bad that I can maybe not pay as much attention to her as I should and for the days I'm away from her so much. It is so great to see how happy the kids all are to be together. Braden and Kayla got to go to their friend's birthday party together today and had such a fun time, and when we got home this afternoon, Brooklyn and Kelsey hugged each other tight and Brookie said, "Ohhh my little baby." I know kids are resilient and they will all be fine through this time, but there are definitely some hard days.