Kassidy is practically done with half of her senior year already. She continues to receive emails and letters from softball coaches which breaks my heart, but my daughter will not be pursuing her goal of playing college softball this next year. I am so sad she's had to give up so much in the last year. Cancer has done that! I hate you Cancer! So not fair! But Kassidy accepts all her circumstances so much better than we do, but again she is WAY stronger than we are.
Fortunately, Kass has gotten a chance to do some pretty cool things in the last couple of months. In September, she was invited by the Pediatric Brain Tumor Association Ride for Kids to ride as one of the star kids. This ride is done every year to raise money for research and scholarships for kids fighting brain tumors. A couple hundred riders showed up to support the ride and they rode down the 215 which was shut down just for them all the way to Town Square Mall. Kass had a great time!
|Kass got to check off her bucket list: Riding in a Side Car!|
|Ready to go!|
|It was all worth that smile!|
|Each kid was interviewed after the Ride!|
The beginning October was Kassidy's fundraiser, Ride for Life, this was a motorcycle Poker Run that was held by the Nevada Childhood Cancer to raise money for Kass and for NCCF. Ryan and Kassidy attended while I visited and watched Kyle run in Boise that weekend. To my surprise she felt fabulous that day which was great to hear since she had been throwing up days before off and on most likely from brain swelling. We had been administering a dose of IV decadron only when she absolutely needs it which seems to be working. She refuses to take it every day.
|First Stop for the Poker Run!|
|THANK YOU TO ALL THE VOLUNTEERS & PARTICIPANTS!!!!|
|Kass with a look a like Kiss guy at the fundraiser.|
|Kass & the Rebels Women's Basketball Team! Go Rebels!!!|
|Kass & TJ being silly.|
|Our pretty girl|
|Kass getting interviewd and asked who she wants to walk to do her champion walk with.|
|She didn't even know who Donny Osmond was!!! OH MY GOSH!|
|Kass with her medal.|
|Really Kass, that small!!!|
|Her "Never Give Up" Pumpkin|
|The kids did a great job!|
Here is a clip of us in the audience go to the FACEBOOK PHOTO segment she does:
|Waiting for our number to be called!|
|Ready for the show to start! I snuck a pic.|
|After the show had to the Original Bob's Big Boy Restaurant for a shake.|
|Both excited to see each other!|
For those who were Timed Runners, here is a link for your results:
More PICS SOON!
|November 3, 2012 at Bunker Park|
|2nd Annual Kassidy's Army 5k run & 1 mile Family Walk|
|Kass with Sam and Nicole, our old neighbors.|
|Centennial Polynesian Club|
|Nick, Kyle & Thomas doing the stretches|
Well, all in all Kass has been doing fairly well. When she absolutely feels poorly she lets me give her decadron which is not very often. After the weekend of the run, she scared Ryan and I because she said she was having a hard time breathing and kept choking constantly on her saliva. This is scary because the saliva can cause aspiration pneumonia and just not being able to breathe is terrifying for anyone. Unfortunately, this is a problem with brain stem tumors, the ability to breath, swallow etc is all controlled by the dang brain stem.
I called her oncologist that morning and he fit us in right at 9am. Sigh! He proceeded to say that her throat showed no signs of infection or a cold and that most likely was brain swelling and that was puting pressure on her brain stem. Also, I asked him how we would know if her ability to swallow is slowing down, and he we would have to do a swallow test which we hope to do in two weeks. He also said we would need an MRI sooner than later to make sure there was no tumor growth and everything is ok. He knows how Kass hates steroids so he had me give her 2mg of decadron in pill form for 3 days and see if that helped with the choking and throat. Well it did, by the next day she said she seemed to breath better. What a relief!! In my mind I was thinking this damn tumor better not be growing!
I've also been speaking with the other parents of brain stem gangliogliomas and there has been a couple studies where they have found a correlation with ganglioglioma tumors and the mutation of the BRAF V600e which is the same mutation that causes melanoma cancers. A couple have sent their pathology slides of their children's tumor and they have all come back positive for this gene mutation. I started researching online and saw that there was a study of this done in Germany at the University of Heidelberg so I first called, but couldn't understand what they were saying. Duh! So I emailed and I got a response back that they are gonna start a trial with a drug called Vemurafenib, but the trial is yet not opened and it's only for adults. Also, there is a trial here in the US that should be opening up using the drug Selumetinib, aka AZD6355 for pediatric patients. It will be very interesting to see if Kassidy's tumor has this mutation and if does what these drugs will bring about in the future. It's a step in the right direction to a cure, but since gangliogliomas are not a priority in the brain tumor world I hope the funding continues to these trials. When I spoke to Dr. Bernstein he said he would get on board on maybe next clinical trial that he is up to date with the results. So it's definitely something to watch for.
Yesterday was our dreaded MRI. It was veteran's day so Ryan was off. We both went to Steinberg to take Kass, she did pretty good. Not feeling well as always, but this time we gave her Phenerghan for the nausea which makes her sleepy and I snuck some dccadron in her IV early in the morning to reduce swelling. SHHHH!! She did not throw up this time! YES! The cd has been overnighted so now we wait for results. We will keep you all posted. Thank you all for your prayers and good thoughts! Always, always a hard time for us. I almost feel that every MRI gets harder and harder. Like my friend Catherine a 3 time cancer survivor says, " I guess it's just because the way we live our life depends from the results. Everything depends on what the results are." So true!