Brooklyn's 4th Birthday!!

Yes, it is that time a year again when we get to celebrate having Brooklyn in our lives another year! I love how close her birthday is to Thanksgiving (sometimes on!), because I get to reflect on how thankful I am for her in my life. I know that I am suppose to be the mother but this little girl has taught me more about life and love than I could ever teach her. She is my pillar of strength and how I am able to deal with everything else in my life. I know that she is special to everybody in our little family. Her little brother has to give her hugs every time he wakes up. Brooklyn is the best daughter, sister, niece, granddaughter, and cousin in the world. 

This year since we were at  my parents for Thanksgiving, Brooklyn was able to have A LOT of cousins for her birthday party and one of her cousins actually has the same birthday so we had a two for one situation. Because so many of the children were so young we only had one activity but all the kids loved it. We made our own gingerbread houses and while not everything turned out how we hoped, the kids had were happy has long as we kept the bowls of candy full. We had balloons for everybody and honestly this was proabably the hit of the party. The kids just ran around for about twenty minutes playing with balloons. All of Brooklyn's cousins were so great and caring towards her and her cousin Maddox. They both cashed in on gifts ( and money, apparently if your a cute four year old girl and ask your grandpa for "twenty bucks" he will give it to you!). Thank you to all of our family for making Brooklyn's 4th birthday so memorable and fun for her. We love our family and Brooklyn cries daily to be able to play with her cousins.

  Brooklyn and her cousin Maddox with their haul of presents.

   A very happy birthday girl!

 Yes, this is a Rapunzel wig. It was all we could do to convince her not to sleep in it. She only wore it for a little while and I am still trying to get enough tangles out to braid it.

  Opening presents while the kids get closer and closer.

  Porter off to find the cake....again!

  Some of our party goers..... it was a really long day.

 Brooklyn's Rapunzel cake. We ordered it before we knew Maddox was coming so her didn't get his name on it.

  Lighting the cake and trying to keep little fingers out at the same time.

  The birthday girl and mommy.

A little girl who couldn't be happier with life!

Thanksgiving

This year for Thanksgiving we went to my parents house in Vernal, UT. The kids were so excited to spend time with all their cousins and see their grandma and grandpa Weaver. Vernal does a really fun thing the day after Thanksgiving called Holly Days, and it is a whole day filled with tons of frees stuff for the kids to do. We went on a "train ride", had a really fun time at Western Park were it was full of rides and activity for kids to do. It was so cold and the lines were really long that we didn't have time to ride the ponies or camels but they had them out side that the kids were still able to pet them and it seemed good enough that we didn't press the issue. The whole weekend was just so fun. I have a really big/loud family and I appreciate Derek for keeping his patience through the weekend. The kids just ran around and it was so good to see Brooklyn moving and running about by herself without needed my help.
Close up of Brooklyn on the little "train ride"
Group shot of all the cousins
Brooklyn and Porter on a mini swing ride. It got going pretty fast but they both loved it and never cried.

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."