Hi @lmp1
For some reason, I missed your update that you posted a few days ago. How upsetting that the tumor has tenaciously returned for a third time. When will you know which treatment of the clinical trial she will be getting?

@colleenyoung She is in the clinical trial DSP-7888 and .avastin. Monday will be her 4th week in the trial. She gets 6 injections once a week right now. They put them close to the neck and back. Right now it’s leaving raised red marks similar to a bad bug bite but worse. It itches and is a little sore. They are hoping it doesn’t get any worse because if it does she will be dropped from the trial. I wish there was a way to connect with other people doing the trial but so far we haven’t heard of anyone else. She is the only person in our state and they told us there was maybe 12-14 people across the United States participating.

@lmp1 That would be amazing if we could find others participating in the same clinical trial to share here on Connect. I surely hope that her reactions to the injections doesn't worsen.

@daniellemarie How are you and Danica doing?

I have a blog about xanthoastrocytoma. I want to give information about treatments and any topic around this tumor. Also to put in contact people and doctors interested in it.
The blog can be found by typing on the internet:"blog xantoastrocitoma".

@lmp71 hello I am so sorry I have not been on in a while. My world has been shattered and I am trying to cope. January 28,2019 I lost my daughter Danica this evil pxa tumor. Danica ran out of options and what medicines that have been known to help shrink these kind of tumors. Hers just got overly aggressive and took over. She had tumor all over by the time she was sent home on hospice and having swelling nausea and losing right side functioning since her tumor was on left and front. She was sent home from Oakland children’s hospital on hospice on a Friday which hospice was not coming till that following Monday so she had been sent home with a couple strong hard core pain medications that I had to give her since her headaches became consistent and very painful. By Sunday morning at 3am I had to make the decision to load her up with my other children husband and my good friend and her daughter that Danica has over for sleep over even in the pain and condition she was in and I was letting her do and have what ever she wanted knowing her days were numbered. We got to Oakland and they admitted her and started her on pain meds and asked what we wanted as in her being home after they get pain controlled to pass there or hospital and we picked hospital because of so many reason. First it’s where she had her care, they can control her pain and her comfort and team would be there with us. Danica fought 8 long days till she passed at 2:49am on January 28, 2019. It was the worse and long 7hrs of my life that I had to watch and go through due to her labor breathing and sounds and being so powerless and hit with reality that my baby was leaving me forever. Today I am still not emotionally ok. My 7 year old who’s been here in home and shared a room with her is having a hell of a time and he is in grieving therapy. My 19 year has checked out and became completely detached as well as I have. I have to drag my self and push to get through each day for my kids and it has taken its toll. My life with out her is hell and I can’t believe she is gone.