Pediatric Brainstem Glioma. DIPG. Our perfect, silly, and lovely, Zamora Moon was diagnosed on July 15th , 2015. This cancer is aggressive, so our battle has been hard. "Diffuse Intrinsic Pontine Glioma", is a rare and aggressive brain cancer that affects the central nervous system. The diagnosis was sudden and the prognosis is terminal, there is a 0% survival rate.
We have traveled to Germany to get immunotherapy five times in 2016, went to Bristol England to place a CED catherder in her brain to put chemo directly on the brain inoperable brain tumor, spend three months in Europe, and flying back to USA to get immunotherapy, the family pulled other daughter out of school and moved to London to get chemo again via CED to her brain tumor. She has to go back every 4 weeks and stay a week in London. This will potentially save her life and she is a pioneer for other children with DIPG. The estimated costs will be $15,000 a month with airplane tickets, accommodations, and hospital bills which are not covered by our insurance. This is ONLY done in England at the Harley Hospital for Children. in London.
So after some set-backs earlier this year, we think Zamora’s situation has stabilized enough that she is able to travel.
Typically with cancer, the survival chances are good when it can surgically been cut out. Chemotherapy works somewhat, but when surgery is not an option, like with Leukemia, Chemotherapy can bring up the survival chances up to about 80%.
Unfortunately for Zamora and all the kids afflicted with DIPG, surgery is not an option due to the location of the tumor and its diffuse nature.
Chemotherapy is not an option either as the drug are filtered out by the Blood-brain-barrier that protects our brain from harmful pollutant. That lives us to the unproven, avant-garde therapies like Viro-therapy and immunotherapy. We did that for Zamora, taking her to Germany 5 times to receive treatment at IOZK and it helped keeps her all these months. However, with the pioneering CED surgery she had in Bristol in the Spring to place a port directly into her tumor, we opened up for her a new delivery channel. Now she is finally able to receive Chemotherapy in a way that can make a difference.
She reacted very badly to the first drug we tried in May. But she has now recovered and we are in London trying a different drug.
This time, it looks like she is supporting it well and we are hopeful that it will make a difference.
Unfortunately, accessing her brain-port can only be done in London and we’ll have to be back for new infusion on a monthly basis. This means new expenses to pay for the flights, the living in London while there and the treatment itself. Overall, this will drive monthly expenses of about $15,000. These cost will be monthly.
We appreciate your love, friendship, strength, and support as we face the challenges ahead. Please help us help her live..no donation is too small.
Please if you can spread this around on your Facebook or email to your friends. I am in complete gratitude and humbled by everyone's attempt to save our daughter. Much love to everyone..from the sea from the air from the love that warms the earth...
Check out Zamora's links she learn about her journey and treatment she is getting and other info.
Th doc toowas happy for the ct scan , we are so thankful for everyone . It looks like Zamora may stay in London past even July, so our address is as follows: please send letters , crafts, handmade dolls and bunnies, or just send your love .
Zamora moon Lusinchi
43 Ingestre Court
Multi approach to killing DIPG.
Is there a cure for DIPG no.
Will there be? Yes, if only we call and represent childhood cancer and stop pretending it doesn't exist. We have social media now and there is no excuse.
Please read this article, please share it, please understand that everyday from today a new child's parents will hear this news: Your has DIPG, take them home now and wait for them to die, literally, oh and don't forget to take lots of pictures, pick out a gravestone and where you want to bury them, make a lot of memories , give them a good quality of life, and talk to them about heaven because yeah, they are going to die soon. Oh wait, try not to go insane by my inability to show any emotion as an oncologist delivering you the news that your child will die, and our society doesn't seem to find funding for the orphan "cancer", because we as a society, and I mean the world!! don't deem childhood cancer especially this one profitable. Ok? Thanks have a nice day. I am not exaggerating on any of the words that were spoken to me sans the sarcastic part.
Here is our journey: But first I would like to add my piece of personal philosophy, I feel that man has ruled this world as a babbling successor long enough! We are currently in London under the guidance of Dr. Stergios Zacharoulis, who many might thinks western cowboy to the DIPG world, but he looks beyond the parameters and has started a movement hopefully under the guidance of Nerousurgeon professor Gill here at LONDON Harley Street. Now , here is my two cents. We used Sodium Valproate for Zamoras first infusion through CED, she walked in, literally walked in May 2016, and has never walked again. Awe were denied going back to Bristol because it was deemed she was in progression, which she was not. We have gotten another chance, here in LONDON doing more CED infusions. First we have done four rounds of carboplatin and now we are using MTX-110, known as panobinostat by Midatech company. We are happy to say, Zamora is regaining herself, and her tumor has lots of necrosis , and no there has not been any spread.
We will continue to use MTX-110 (panobinostat) because we have seen many children have an adverse affect to sodium valproate. Please people check what goes into your Childs head! We often take what the doctors tell us without researching because we are so desperate, but doctors are not infallible. Professor Gill and Stergios remain our hero. If we are to fight DIPG, we must must must must, fight it with a multi sensors approach , as in teaching children, we must use all different modalities. People ask me everyday, DOES IOZK immunotherapy, will this be the cure, will CED in London be the cure? Answer no. No folks it will not. A multi approach is all we have.
thankfully Professor Gill and Dr. Stergios Zacharoulis accepted us again. We started carboplatin, and are now using MTX-110 which targets most DIPG mutation H3M27X gene that is prevalent in most DIPG children ( about 70 percent). We are excited to use this drug, and have high hopes this will kill at least 30 percent of the tumor. But we must find the faucet. We have a long road ahead of us, and there are many roads to kill it. I am sending love to all DIPG families and hope this may be useful, and to the people who send us cards, presents and love and prayers everyday, I could not do it without you. We need help of course. Please see our go fund me page :
Our rent in London is about 3800 a month ( which is pretty good considering hotels cost over 200 a night) but still UNBELIEVABLE .
We have unexpected medical bills, I am not working, and Zamora has alternative medical supplements she is dependent on. We are solely dependent on you for helping Zamora live, ,,crazy but none of this is covered by insurance, and none of these life saving procedures are in the USA.
Please spread this around and help in anyway you can. With our love and humbleness. ( please excuse any errors writing from my phone with thumbs)
Love to you all and thank you for saving Zamoras life.