Saturday, April 6, 2013

No More Drugs!


Praise God from Whom all blessings flow, praise Him all creatures here below. Praise Him above ye heavenly host, praise Father, Son and Holy Ghost. I remember singing that song in church as a kid and I cannot think of more appropriate words to describe how we are feeling today. This morning we gave Brooklyn her last dose of chemo! It was such a big deal for us because we know how long the last two years and three months have been. We know how much she has gone through and how hard it has been to see her in pain. We know how many people have been praying for her and for our whole family. We also know what a miracle it is that she is cured! Brooklyn, on the other hand, doesn't completely understand that she is done. She seemed excited when we told her, but I don't think she really gets it. It has been such a part of her every day routine for so long, I'm sure it's hard for her to imagine it changing. We have definitely had a crazy packed month since my last post. A few days after I wrote about finding out about her final day of meds and how great she has been doing, we ended up in the hospital. I had this whole idea for another post about jinx-ing stuff, like you never tell a pitcher he is throwing a no-hitter; you never tell someone that if they make the next putt, they will break 80; and you never say, wow- the traffic is really moving! I had just gotten done saying that we hadn't gone to the hospital in over a year, and what do you know...we end up going. :) Not that I believe in any of that jinx stuff-it is just funny, and of course I never had time to sit down and write it! Brooklyn got a fever one Saturday after we went to Kayla's basketball game. We had a few hours at home before Braden's game and she all of a sudden had a temperature. We were so used to her being so healthy that both Mike and I were shocked. We called the hospital and spoke with the on-call oncologist and she said we needed to come in. However, Braden had a playoff basketball game and Mike had scheduled baseball practice so we had to go to those before we could go to the hospital. After the game and practice, my parents came over to watch the other kids and we took Brooklyn down to the hospital. We were sure we would be back soon, because seemed to feel okay and her fever had dropped some, so it didn't seem like we really needed to go. We knew we had to though, so we went down to the ER and got checked in. One thing they worry about when Brooklyn gets a fever is that she may have an infection in her port, which would be a big deal because it leads right to her heart. They did a chest X-ray because she had had a cough for awhile and her home nurse had heard some junk in her lungs earlier in the week, so we figured she probably had pneumonia. However, the X-ray didn't show anything, so they figured she must have something else going on. She had to do a blood culture and urine sample and they hooked her up to an IV just keep her line open. They started giving her antibiotics since she had a fever, and finally decided to admit us to the children's floor at about 1:00am. Mike had gone home to be with the kids and Brooklyn finally fell asleep a little before midnight. I was so tired too, but so many people come in and out and ask questions, there isn't much time for sleeping. It was nice to finally get upstairs because my friend Brandi was working that night so she helped me get Brookie all settled and got the chair bed set up for me. Brookie's fever came back the next day so they decided we had to stay another night. They never were quite sure what caused the fever but we were able to go home finally Monday night. We had a relaxing next few days just staying home and trying to stay healthy, especially because Mike and I had to leave on Thursday to go to Arizona for a work function. It was a great trip and we were able to relax even though we were apprehensive about being away so soon after she had been sick. Thankfully she stayed healthy and all the kids had a fun time with my parents. A few days after we got back, it was Brooklyn's 5th birthday! We celebrated with her friends at Chuck E Cheese and it was a great day. She was on steroids again that week so she didn't feel great, but we still had a lot of fun. Since she was diagnosed when she was just 2, she has celebrated 3 out of 5 birthdays while going through treatment. She is such a trooper. The rest of March was filled with more birthdays- my mom, my aunt and mine, along with our normal busy routine. Kayla and Brooklyn have started swim clinics because they are going to be on the swim team this summer. We had the last week of March off from school for spring break, and that was fun. We just stayed in town and enjoyed sleeping in and not doing homework! We went to a movie, a baseball game and mini-golfing, we colored eggs with friends and had a wonderful Easter. And Brooklyn and Kayla both lost their first teeth!! It was a busy week in our house! This last Monday we had Brooklyn's last appointment where she got chemo in her port. She started steroids again Monday night and so it was another rough week where she didn't feel good, but also so exciting because she finished one drug Tuesday night, finished a different one Thursday night and her last steroid this morning! Now all she has left to do is take her antibiotics three times a week for the next 6 months, which seems like nothing after all the other stuff she's had to take. She will still go see the oncologist once a month for a check up and blood test for the next year, and then after that she will be tested every three months for a year and then once yearly. In 6 months, she will be able to start catching up on her immunizations, and so will Kayla and Kelsey, who haven't been able to receive theirs in order to keep Brooklyn healthy. We also made an appointment to get her port taken out in a few weeks. I had thought we would wait a little longer, just to give her a little break, but I found out that if she gets a fever even after being off medication, we would still have to go to the hospital and put her on antibiotics because of the chance of a port infection. I also found out that after it is taken out, they don't want it to be submerged (like in the pool or bath) for 7 days, so we thought it would be better to do it now before it gets super hot and she will want to swim every day. She will start Kindergarten this fall and most people will have no idea all she has gone through before her school years even started, but we will never forget and will be forever thankful that she has overcome such a scary disease.

Friday, February 8, 2013

Numbers


I have always been kind of a 'numbers' person. I usually did well in math in school and I enjoy figuring out math equations (to an extent!) At this point in my life, with four kids, there are always a lot of numbers floating around in my head. Knowing everyone's birthdays, what time they need to get dropped off and picked up from school or practice or a friends' house, how many pages of homework to do, how many minutes they read every day... I know in every house with kids, the story is the same. With Brooklyn, there is a whole new set of numbers to remember- how many pills she takes every night, what her blood counts are, what temperature her fever needs to be for us to go into the hospital. It is an every day necessity, remembering how many pills on which days - it's not something we can forget or screw up. There are a lot of things and numbers to remember! It's also weird to look at Kelsey now and think that she is about the age that Brooklyn was when she was diagnosed. It's hard to remember back to the time before Brooklyn had leukemia, she doesn't remember anything from before she was sick at all. Taking medication daily and going to the doctor regularly is so much a part of who she is now. She even said the other day that she never wants to take her "special necklace" (her port) out. It makes me happy that we have made her feel special that she has her necklace, but also kind of sad that she is almost comforted by having it there because she's been sick for so long - about half of her life. But there is another set of numbers that is super exciting... Our countdown to the end of Brooklyn's treatment. It is hard to believe that she is almost done! Not to say that the last two years have flown by, because that is not the case at all; there have been some long days and trying times for sure, as well sleepless nights when we have been very worried about her health. But God has brought us through the last two years with little interruption to her treatment schedule, and He has brought us so much support through the caring concern others have shown our family. When we went in to the doctor this week, she heard fluid in Brooklyn's lungs. It is something I've been waiting for - it seems unreal that we haven't been admitted to the hospital since last winter! I am happy about it and extremely glad that she's been so healthy, but we've all had a bad cough and cold over the last month or so and I keep thinking that she is going to get pneumonia again. The doctor wasn't entirely sure that it is pneumonia, but she put Brookie on a additional antibiotic just in case. I was relieved because I was assuming she would have to be checked into the hospital, but as long as she stays fever free, she won't have to. It has been a rough week for her with being on steroids and the additional antibiotic. She has felt progressively worse every day. Her cough does seem to be better though so that is good. The exciting part of her appointment was when the nurse came in and gave us Brooklyn's calendar of treatment for the next few months. Her final day of treatment is April 4th!!! I can't believe it is so soon! I was thinking about it the other day when we were driving somewhere and I got this almost overwhelming feeling of joy and excitement. Next week is her last spinal tap! It seemed insurmountable when they said she would receive about 25 spinal taps during the course of her treatment, and now here we are - at the last one! This entire experience over the last 2 + years has taught me that no matter what the numbers may be, as overwhelming and scary as they may seem, if we just take every day one at a time, God will get us through.