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.