She begins Panobinostat today. Any advice from parents who’ve given this drug to their kids? Or anyone who’s taken it at all? Please post here. Thank you for any solicited advice. I’m so nervous and concerned for her, and want to be prepared. #KatherineTheBrave #DIPGMonster #CancerWarrior #DIPGWarrior
I had the opportunity to have lunch with Katie at her school today since I have today off for working this Saturday. During the lunch she kept saying “remember when I wasn’t sick Dad?” I said your not sick right now and if you keep doing the things you need to do and that Mom and I need you to do, then we will keep you healthy. Her response broke my heart, “I just want it to be like it was before I was sick” I hate that she goes through this and it turns my stomach to think that there is no cure and that a kid has to long for how it was before cancer stuck it’s ugly self into her and all these other beautiful children’s lives. As I was getting ready to leave, she hugged me hard and told me she loved me very much and I told her go have fun on that playground and be a kid! It’s what she deserves. It’s what they all deserve.
The Switch Witch came to #KatherineTheBrave‘s house last night. Katherine ate only two pieces of candy on Halloween so that she could get a prize from her. And she had so much candy!!! Thank you Jill for the idea. She definitely liked it better this way!
#PleaseShareKatherinesStory so that other kids will consider doing this!!!
Thank you everyone. The appointment went well. Dr. Anderson believes we are doing everything we can and as we should at this point. He did say he would have started with a chemo named Temador in addition to Avastin, although he believes that at this point the Pano may be our next best bet. This is an incurable cancer. Every patient is patient zero. So we have to sacrifice our children to help others and that’s the fate we’ve been dealt. So as long as she is not suffering, we will do out duty. Happily. He also talked about palliative care, which was very hard on me. Something that I haven’t talked about with anybody. He specializes in it, and feels that it’s important for Katie’s sake. We need to be ready and deal with it early because of this type of cancer and where it sits on the brain cancer spectrum, it’s hard to fight. That was hard. So very hard. He suggested that we wait until the next scan to see how this progresses. If it’s good, we wait more, and if it’s progressing, we move forward and he will help us. He mentioned a new therapy for brain cancer that I wanted to mention. It is state of the art out of City of Hope. It prevents brain cancer cells from multiplying. A proton type of device. The cells can’t split. Although, again, as with many great new options, Katie’s Glioma is in the worst possible spot for any cancer to be, anywhere in the body. You just can’t get to it. There is NO way. So she won’t qualify. I’ll be meeting with him again in six months if everything is going smoothly or after the next scan if things don’t go so well for her. Positive note: He mentioned a boy who is now in his 20s with the exact same Glioma. He treated the boys 20 years ago and still keeps in touch today. This boy was that .01%. So it is possible. There is HOPE. Thank you for all the good wishes, and prayers, and thoughts. We need them and appreciate them greatly. Although I am disappointed that they didn’t tell me much more, I am elated that they told me we were doing everything that we could medicinal and alternatively for her. He mentioned that I was well-versed on the subject already so that is all we can do. Keep reading and keep looking for options. So I will. If I hadn’t gone I would have wondered and now I have a wonderful palliative care specialist to work with. Thankfully. And so we move forward. Every day. Every minute. Love you all. – mom