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)!