Help Brain cancer Zamora fight4life
The update on this journey since July 2015:
We are reseting our goal back to Zero because we have spent her funds for this year and last. We have traveled to Germany to get immunotherapy five times this year, 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, and now flying back 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, accomadations, and hospital bills which are not covered by our insurance. This is ONLY done in England at the Harely 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 pollutent. 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 everyones 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.
So we had to take a break. I decided to get her into a pool as soon as possible and she is beginning to work with a cranial therapist who will work with her cranial nerves and align her spinal cord.
Her doctor has said her MRI is fine, stable, intact we are having a PET scan, because it is quite possible her tumor is dead, of course with DIPG , that means nothing, even NED is nothing to celebrate, because DIPG comes back almost all the time, all the time making its way into the medulla, the CNS, the spine, the cerebellum , and so forth..no DIPG doesn't sleep, and looks can be deceiving.
She does have Necrosis which has been caused by chemo therapy, which can also be dangerous, and we are afraid, if she does not show any clinical improvement, she will die, of just a heartbreak. She had an awful flu and went to the hospital, her breathing was irregular, I thought I wasn't going to be able to live in a world with Zamora in it. My heart broke, my spirit was down. I just wanted her to live, and there was nothing I could do expect wait...with the faces of the doctors less hopeful, I found the strength and yelled, she isn't going anywhere, so get your"quality of Life" talk away FROM ME!
Your body's tissues need an adequate supply of oxygen to function. When tissue is injured, it requires even more oxygen to survive. Hyperbaric oxygen therapy increases the amount of oxygen your blood can carry. An increase in blood oxygen temporarily restores normal levels of blood gases and tissue function to promote healing and fight infection. We thought this would be a way to start to help Zamora with her necrotic tissue and perhaps deflate the necrotic tumor so she can start to use her legs, arms and to talk again.
We start this therapy hopefully next week. She swims with her papa everyday in a warm pool and has cranial water therapy once a week. The fire inside of her, we want to keep it lit, to keep it from burning out.
We are here because of all of you believing in her. Her spirit, everyone of you has brought this little girl to this place. We are humbled by your love, your donation and prayers. July will be two years past diagnose. Two years because of you. We continue in London and believe in a month or so, she will resume panobinostat MTX-110 through her CED.
Love to all of you,,thank you for helping us.
Today she was very despondent and lethargic. We are in hospital now and got an MRI . I was nervous all day where a million tears hit the floor, here is what I understood from Dr. Zacahroulis :
So here is what I understood.
The MRI showed not much was changed from last time. So no metastasis or progression toward the breathing nerves. The only change was more necrosis.
The necrosis seems to have reached one of the catheter, which would now be pumping the chemo inside the dead part, inflating the cyst.
The dead part seems to have filled up with fluid which cause some pressure on the pons and that is what is making Zamora’s symptoms worse.
The doctors will convene and see what is best moving forward, it could mean not using the catheter that is exposed, or it could mean waiting for the cyst to open up or disappear or maybe even having to drain it. Dr Z thought that Avastin could help dry it out and he was going to look into the possibility of giving her a shot this week.
So even if that could cause a pause in the treatment there are several very positive aspects:
1/ the treatment is still working as necrosis is gaining
2/ there is a rational, non nefarious explanation for her getting worse this week (the pressure from the fluid build up - NOT progression).
Please spread this around. Donate 5 bucks or more , if everyone did we would be set for our next procedure . For example Avastin cost one shot 7000 dollars all not cover by insurance as we are in London .
Much love as always .
Marisa, Marc, and the brave Zamora who won't stop fighting
The rent is almost 3900 a month just to live in central London 25 min walk to hospital . Copy and paste this to your friends and family 10 dollars helps.
She is resting now and we must stay awhile in hospital .
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
Love marisa Marc and Zamora
Here is an easier online version of Zamoras story, I hope to spread this to as many people as possible.
Thank you all for your support. We are still fund raising and need to pay rent here in London, pay for my salary and all medical expenses. I know its a lot to ask, but please spread this story around, it means the world to us.
In solidarity and love,
Marisa and Marc and of course Zamora Moon
My thoughts and prayers are with you, Zamora and your family.
Hi Marissa! I hope Zamora is well. My name is Rodolfo Garcia. We leave in San Jose,Ca. My daughter is been diagnos with DIPG last year Nov.1,2016. We're in a situation of finding a cure for my daughter Chloe. I would like to ask you about how's the treatment. If you can message me, it will be really helpfull. Thank you!
Hello, We pray for Zamora daily, and will continue. We met you on a flight from London to SF. I'd like to check in with you to transfer flight miles. Hoping you still have my biz card. Please send me an email to connect. God Bless!
https://m.facebook.com/story.php?story_fbid=1319644931380396&id=997108126967413 Have you looked into Dr. Burzynski?
I was at my Vet today. My Doctor advised me of a tea that has helped cancer patients ; Cota tea aka " Navajo tea ". Love Craig
You continue to show love beyond boundaries. Zamora is one special baby. This world is full of special people. She is one. You are an amazing mother who will go to hell and back to save their child. My love and prayers hope to reach you. I love you Marisa I love Zamora. Always on my mind. With love, ~Anita
You are not alone. I agree many people forget when you have a child with chronic illness. Their lives keep moving forward because they are supposed to. It's very isolating and scary to have a child who's health is determined by doctors guessing at how to treat. Yet, it's all we have and for that, we are grateful. I will keep praying for your beautiful little girl. Know many care. I feel your pain. I'm so sorry. Know God loves you and is watching over you both.
I'm so sorry you, Zamora and the family are having to go through this. You are in my thoughts and prayers.
Zamora, Happy New Year from Polly and this is fantastic to see you riding a bike again!! You are such a Mighty Girl!!!!! xxxx Polly
I know that fear. It's horrible
Sorry to hear she wasn't feeling too well. Hope she'll feel better soon. With love..
Merry Christmas, Zamora and family! Polly has sent you a little present to your home in Woodside. Stay strong!! We are all praying and sending you healing light. We LOVE YOU!!!
So happy to see this! Have a joyous holiday. xo