Pleomorphic xanthoastrocytoma tumor (Pxa): help

Hi everyone. Hoping to find some info on here. My best friend's daughter has a PXA grade 3 - not responding to treatment. Has had two tumor removal surgeries and is on nivolumab as last effort and that doesn't seem to be working. Very aggressive tumor. Radiation/Chemo - nothing worked. Anyone have any thoughts on last ditch ideas. She is at Children's Hospital of Philadelphia and they are talking about hospice. This beautiful kid just turned 18 and has brilliant future ahead.

Hi everyone. Hoping to find some info on here. My best friend's daughter has a PXA grade 3 - not responding to treatment. Has had two tumor removal surgeries and is on nivolumab as last effort and that doesn't seem to be working. Very aggressive tumor. Radiation/Chemo - nothing worked. Anyone have any thoughts on last ditch ideas. She is at Children's Hospital of Philadelphia and they are talking about hospice. This beautiful kid just turned 18 and has brilliant future ahead.

@ ejacobs16 hello I am so sorry your best friends daughter and the family have to go through this horrible nightmare. My daughter Danica has just passed January 28, 2019 age 10 years old from PXA grade 3. She had 14.5 hour surgery the first attempt to remove and they could only get 97% out due to it being on a blood vessel. Then she did radiation for 5 weeks and it still grew back. Then she was put on tafinlar chemo for 9 months and it shrunk to nothing but her next mri which she had every three months came back that it had grown back. We had to have a meeting with her team from Oakland children’s hospital to see what her next options were and the plan was a biopsy and try to remove what little they could since it was growing from vessel area and to make sure it had not changed. Then they would start her on two other chemos together. So October of 2018 Danica has her surgery set and days before that she had several quick scans and mri’s because she was getting nauseous like she had in the start of it all. Well scans showed bad news and it had doubled in size and she ended up having a 10.5 hour surgery and her removal was 75% we went home grateful she was alive and had no complications from another long brain surgery. But inside we New our options were down to this last treatment that were the two chemos. Sadly to say Danica’s rumor was out of control. We were sent home on hospice from a check up after being on the treatment for 2 1/2 months and nothing changed with medications. Our world crumbled and Danica’s pain at home was not able to be controlled we ended up back in Oakland children’s hospital for her last 8 days of her life and she passed. We caught with her for two years and it has torn me and my family up. I pray for your friends child and the family for strength love and a miracle with this kind of cancer because it is very rare and has no cure yet. Breaks my heart that our children have to go through this. 💔😭🙏🏻

I haven’t been on in a long time. Wanted to check see how everyone is doing? @daniellemarie how is your daughter?
Update on my daughter: her tumor is growing back for the 3rd time. The Temador and Radiation didn’t stop it. So now she is starting a clinical trial. She is doing well. Because she had a hole in her brain from her other 2 surgeries the tumor has empty space to grow in to. Her symptoms hasn’t started like before yet. All our hope is in in this clinical trial. We pray this will stop the tumor growing. It’s a combination of Avastin and another trial drug, if she gets the trial drug. They pick who gets at random by a computer. It isn’t a blind study so once she starts we will know if she gets both drugs. The Avastin could stop growth. Sure wish there was more paths to take to stop this cancer. It is evil.

@ ejacobs16 hello I am so sorry your best friends daughter and the family have to go through this horrible nightmare. My daughter Danica has just passed January 28, 2019 age 10 years old from PXA grade 3. She had 14.5 hour surgery the first attempt to remove and they could only get 97% out due to it being on a blood vessel. Then she did radiation for 5 weeks and it still grew back. Then she was put on tafinlar chemo for 9 months and it shrunk to nothing but her next mri which she had every three months came back that it had grown back. We had to have a meeting with her team from Oakland children’s hospital to see what her next options were and the plan was a biopsy and try to remove what little they could since it was growing from vessel area and to make sure it had not changed. Then they would start her on two other chemos together. So October of 2018 Danica has her surgery set and days before that she had several quick scans and mri’s because she was getting nauseous like she had in the start of it all. Well scans showed bad news and it had doubled in size and she ended up having a 10.5 hour surgery and her removal was 75% we went home grateful she was alive and had no complications from another long brain surgery. But inside we New our options were down to this last treatment that were the two chemos. Sadly to say Danica’s rumor was out of control. We were sent home on hospice from a check up after being on the treatment for 2 1/2 months and nothing changed with medications. Our world crumbled and Danica’s pain at home was not able to be controlled we ended up back in Oakland children’s hospital for her last 8 days of her life and she passed. We caught with her for two years and it has torn me and my family up. I pray for your friends child and the family for strength love and a miracle with this kind of cancer because it is very rare and has no cure yet. Breaks my heart that our children have to go through this. 💔😭🙏🏻

@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.

I’m very sorry for your loss, Danielle. I hope you and your family will find some sort of peace soon. I, myself, have so much anxiety and fear from watching my wife suffer not knowing what the future holds. I really want to thank you for sharing with us as we are all going through this horrific journey with our loved ones. If you ever need to talk we are here for you.

@daniellemarie thank you so much for sharing about the passing of you dear angel, Danica. It has been a long, yet much too short, journey. You're so right. No child - or family - should have to go through this.
I invite you to continue to share as your journey continues now and you navigate your path through loss and grief. We recently opened a new group dedicated to accompanying people so that no one has to do this alone. I hope you'll post here:
- Loss & Grief https://connect.mayoclinic.org/group/loss-grief/