Happy Halloween!

Halloween is definitely one of my favorite holidays! I was worried we wouldn't be able to do much because of the timing of Brooklyn's Chemo would put her at her lowest counts and we usually have to isolate her when that happens. Luckily, we finished her last round of Chemo three days before Halloween and her counts are just fine at that time. Her last round went wonderful. Brooklyn is an old pro and didn't even get upset the whole time we were at Primaries. Because the Chemotherapy has damaged her hearing we did a lower dose and she tolerated everything just fine. Since having the NG tube put in she had put some weight on and seems to have a lot more energy. Our next plan is to have an MRI next week and sit down and talk with her oncologist about options. We also meet with her new ENT doctor and get started on hearing aids. I don't know how she is going to feel about them but like everything she will probably handle it better than she should.

By the time Halloween came around we found out that our neighborhood and ward weren't really doing anything so I called my brother in Pocatello and we crashed their Halloween. Brooklyn and Porter got to go Trick-or-treating with their four girl cousins and had so much fun. Brooklyn dressed up like a doctor (because she pretty much is one!) and Porter was a fireman.

Here is our family in my brother Kelly's neighborhood. Its sad how quickly you forget the cold in Idaho!
Here is Dr. Brooklyn. It was a fun way to get her to wear her mask. She actually loved it.
Here is Brookie and Porter looking into their candy. Porter just tried to run into every body's house. That is about the time we broke out the stroller.
And here is our handsome fireman. He wouldn't keep his hat on and I found out how difficult it is to draw a mustache on a fourteen month old baby! His nose was running and he ate more candy than anybody (him and his cousin his age snuck into some earlier).

Family Update

I have received a few request and thought it was about time for another update. For a change we can update on Porter. The poor kid will probably forever be in Brookie's shadow. He is getting so big and and I am so grateful for his easy disposition. He is walking everywhere and tries his hardest to run. Luckily, he is still too unstable and doesn't get far. He is starting to talk and has learned his role of protecting his sister. Whenever Brooklyn is sad or he is just happy to see her (every time he wakes up) he runs up and gives her a big hug. Those too are so sweet to each other and really take care of each other. Brooklyn is always worried where he is and always gives him hugs and kisses.

Brooklyn is our family's example of strength. She is so brave and tough and rarely complains even when it gets really bad. We are in the home run stretch of her treatments and her body is having trouble recovering each time. We are having to get regular blood transfusions and had to start getting platelet transfusions as well. She is no long eating and has lost too much weight that we decided to put an NG tube in. This is the tube that comes out the nose. I was really worried about this but it has been wonderful. All her doctors were concerned about her extra sensitive gag reflex but everything worked out. She has only had her tube in a few days and already we are up five pounds (this was taken on our scale at home so probably not as accurate as the doctors but close enough). I can also administer all her medications through the tube so she no longer has to take them orally. This is a big help because she was so fed up with taking medicine that she has thrown up her medicine this last round more than she had swallowed it. We stayed ahead of the nausea up until this last round. It was not pleasant for anybody involved. Luckily, it has all passed and she is doing well. When we went in for our last chemo treatment they decided to give her one more week to recover. This is when we put in the NG tube. I was so glad for this break so as to give her a chance to enjoy felling better.

Now I am sure everybody is wondering what comes next. Well, good question! I keep asking it and keep not getting an answer. One thing that you learn is that oncologists never shoot straight. It drives me crazy! We did do a scan a few weeks ago and it showed that the few spots they were concerned about were actually smaller by about half. Everybody was really encouraged by this up until now we didn't even know if chemo would do anything. So because the chemo is working they are hesitant to just stop but because of how wiped out Brooklyn is they are hesitant to keep going. You can all see the frustration that we are experiencing while trying to figure out what to do. On top of all this last week Brooklyn got another routine hearing test and it was discovered that the chemotherapy has damaged her hearing to the point that she will now need hearing aids in both ears. While discouraging, Derek and I both agree that this is something easily fixed. We can do hearing aids. Now as you can tell the question we asked still has not been answered, it never was. It was left with us finishing our last round of chemo (Thursday) and then waiting for three to four weeks and getting another brain and spine MRI. Once we receive the results we will sit down and figure out what options are available. So like all other posts we wait. Thanks to everybody who has kept up with our family and reminded me to post. We love and appreciated you all and only hope that one day we can reciprocate in some way.

Chemotherapy Update

I know that I promised to update more frequently but honestly it has kind of sucked so I waited for a whole bunch so I could just do it all at once. The last update on her chemotherapy was ....I think after her second round......maybe her first. A lot has happened. We had a little bit of a break after her second round because the fluid build up on the back of her head was getting too large and starting to build up in her head again. After some serious consideration her neurosurgeon thought it was necessary to put in a permanent shunt. Most of you probably don't see why this could be such a big deal. The problem is because of the chemotherapy her body is not able to heal as yours or mine would, also undergoing another procedure puts Brooklyn as a huge risk for infection that would go directly to her brain. Another thing most people don't know about shunts is that almost half of them fail due to infection and displacement within the first year. If this happened to Brooklyn we would be in a less than ideal place for surgery. Now, that I have everybody as concerned as I was, I can tell you that her shunt placement went off without a hitch. It was placed perfectly and it has helped immensely. The pocket of fluid is still there and will probably be there until we are done with chemotherapy, but significantly smaller. The neurosurgeon explained it to me this way, "There are two exits of brain fluid for her right now; the shunt and the back of her head. Until that lining can heal inside her brain the fluid will be able to get out. Depending on her position the fluid will follow the path of least resistance." So, sometimes her that pocket is really soft and sometimes it is fairly firm but getting better every day. It still causes her a lot of pain and sadly because the fluid has been pushing on the back of her skull for so long it has indented her skull. The more fluid that drains and the small the pocket gets we can see how indented her skull is and it is very uncomfortable.

Her chemotherapy was able to pick up a few weeks after they placed her shunt. It did put us behind in our schedule though. We have completed four round of chemotherapy. Now, this may not sound like very much but this is the most aggressive chemotherapy available for her. We go every three week and are admitted to Primary Children's for three days while she gets her medication. Our current round is going awesome. We have no fevers or complications. Last round not so much. We had to go the ER twice in one week. I don't think anybody really wants me to explain what they do to her when we have to go but let me just say it is at least six hours of hell for her followed by us having to go to Primary Children's ER for another six hours and the antibiotics they have to give her are so strong they make her sick for a week. Needless to say we are really feeling what it means to have a child go through chemotherapy. To date we have had three ER visits.

We now have only two rounds left and are counting down the days. I know that Brooklyn will sure be happy when Derek and I no longer have to held her down everyday for her Nupogen shot in her leg. Just to put it in perspective of what this poor little girl has to go through I will explain our average week. She gets her shot daily when Derek is here to help me hold her down. Even with the two of us she usually knocks the shot out and has to get poked twice. Monday home health comes to our house and accesses her Port-a-cath to draw labs (its still a poke and three people have to hold her down). Thursday we go to her Pediatricians office so her can examine her and test for Vincristine toxicity. If she pasts the test we go directly to the hospital where they access her Port again; draw labs, and administer her Vincristine (one of her Chemotherapy drugs). All of this on top the daily concoctions of medications I force down her.

On a lighter note, Brooklyn really is doing very well. We have had our ups and downs and you can all see why I haven't updated sooner. It is kind of easier to deal with once is it all done. Our last round is scheduled for October twentieth. We are planning on taking our kids to Disneyland in December to celebrate our horrible/incredible summer and to just relax and have fun with no worries. Just so all of you know her next scan is scheduled at the same time as her next round on the twenty ninth (September). There was some spots on her last MRI on both her brain and down her spine but it was inconclusive. We are keeping our fingers crossed and praying like there is no tomorrow. Her doctor did say, "this little girl has had three brain surgeries and two round of radiation directly in that area, we have no clue what these spots could be. Her brain isn't going to look like a typical brain." This is oddly out of character for this doctor so Derek and I are holding on to it. We would like to thank everybody for keeping in touch and remember Brooklyn in your prayers. We are truly blessed to have the friends and family that we do!

For no other reason other than I love this picture! This is all the people who shaved their heads for my little girl. I love my family! I thought maybe this post should end with a funny picture (look closely as Jordan)!

Relay for Life 2011

This was the first year we decided to do Relay for Life. Derek's sister researched and we thought the Pocatello one would be the best. It was the only one with a princess theme and gave Derek's other sister enough time to have her baby :). Brooklyn was pretty scared of all the people. It is a really great place with a lot of caring people. Brooklyn wasn't used to that many people just coming up to her and talking so she was a little shy. We started with decorated our booth and not to brag or anything but we did win a prize for cutest booth! Then there was survivor dinner Brooklyn and I attended where we did a hand print for next years quilt and talked to some really amazing people. The Relay kicked off with a few people telling their stories and welcoming everybody back. The pictures below are of our survivor lap. Brooke was again a little scared so I was really animated (you can tell by my face). Everybody just lined the track and clapped as all the survivors took the first lap. Our booth sold cotton candy through the night and we did awesome. Thanks again to all mine and Derek's family who helped make and sell it. When it got darker they had a trick-or-treat lap for all the kids and that was probably the highlight of the night. The kids all got as much candy as Halloween without the cold weather. It was such a fun time to hang out with both our families and raise money for such a great cause. I hope we are able to do it every year. Next time we will be better about spreading the word!
I know its a really cheesy face, but it got Brooke excited.
Our cutest booth! Derek's sister Paige made all the pom poms the night she was in labor. Poor girl!
Derek with our "little princess". That was our theme we had made into shirts "We relay for the success of our little princess."

Chemotherapy Complications

We finally made it to starting Chemo. I thought that this would never come. Every time we were to start it seemed like something got in the way. We came on Wednesday and started all her drugs that night. This time Brooklyn was to get three drugs with a second dose of one the next day. Because of drugs in her system they have to pump her full of fluids to make sure that everything gets moved through quick enough and not staying in her body. Well, after her last surgery there was a pocket up fluid building up on the back of her head. Her neurosurgeon said it was okay as long as it doesn't leak. With the amount of fluids they were pumping into her the pocket of fluid swelled considerably. So the oncology department called the neurosurgery and her doctor came and thought that we could do a temporary drain. They can do it either at the top of her head or on her spine (like a spinal tap). They opted for her spine so they didn't make another site for infection with her head still healing from the surgery. They had to put her under and do it in an OR because she got chemo and they needed the most sterile environment. That was put in on Friday. It started to drain a considerable amount but they checked today and it still isn't enough. There is still fluid built up in the back of her head. We were told today not to expect to go home any time soon and she could potentially need a permanent shunt. I feel a little ripped off. I was told we were only going to be here two days tops. I think they tricked me. Brooklyn is doing really good and understands everything that is going on so she is being so big and brave. Her nausea passed pretty good and we were able to keep it under control for the most part. The biggest problem we are having right now is she has mouth sores from the chemo. I was told it was like a cold sore only twenty times worse and in your mouth. They have some rinses that help but she still won't eat. We will keep our fingers crossed. I will keep updating our blog so everybody knows whats going on.

Lagoon!!

Before Brooklyn started Chemotherapy we decided to spend a day at Lagoon. She hasn't been before and loved every minute of it. As we pulled in the parking lot she got really excited and said, "Mommy! Look! Its a playground. I want to go!" She has had a rough recovery from her surgery because the lining in her brain didn't seal up as much as they would have liked (having three brain surgeries doesn't help apparently). She had a fairly large pocket of brain fluid in the back of her head. The Neurosurgeon wasn't concerned as long as it wasn't leaking. So it was okay but just didn't take away any pressure or swelling which means, she still can't walk. This didn't stop her from having an awesome day. I was so glad my sisters and their kids could come. I know she looks like a sick kid. She hasn't even lost her hair and I am making her wear a bandana. I was just trying to protect the incision from touching anything gross and protect everything from the sun.
My sister, neices, nephews, and of course Brookie.
Brooklyn and her cousin McKay
Brooklyn and her cousin Maddox.

The only ride Brooklyn got scared on. She even rode the big viking ship with all the adults and thought that was fun.