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Camila's Journey

$16,910 of $25,000 goal

Raised by 198 people in 11 months
On May 1st our lives took a huge turn. 

In March of this year, Camila had a weird episode where she collapsed and, what seemed like, stopped breathing. We have been following a doctor's trail since. Appointments, EEGs and an MRI just last month. 

Unfortunately, the MRI confirmed something we thought we  would never have to hear. Camila has something in her brain. After rounds of doctors' opinions, discussions and even a brain biopsy, it has been confirmed that Camila has a high-grade, mid-brain glioma. In the past this has been called a DIPG (diffuse intrinsic pontine glioma). There is no cure for this type of rare brain cancer. 

Right now, Camila is symptom free, completely recovered from her biopsy and enjoying the beginning of summer with her siblings and family. We are extra thankful for this time right now. 

Since there is no treatment for Camila's cancer, (only palliative radiation which we are holding off on because it is mainly used for controlling symptoms which she doesn't have yet), we are really focusing on more holistic tactics mainly with food. We are seeking advice from specialists who know more about diets to help her body fight the cancer. This has proven to be an expensive task given healthy foods for some reason are more expensive in this world (ex. grass fed meat, organic produce, full fat dairy).

We are also focused on giving Camila the best experiences. It is pretty easy to make an 18 month old happy. Everyday is about seeing her smile. If you were to donate, the money would also be used for travel. We are looking to bring the whole family to Guatemala as soon as we can because the kids have family they have not met yet. We will be going to Wisconsin in July and are also thinking of some sort of Disney World trip if we are able to. 

Again, if you were to donate the money would be used for medical expenses (ambulance ride, specialists, travel/parking into Boston), food for Camila's diet and trips. 

We have already received so much support from family and friends and we greatly appreciate all the love.  The love of you all is what is keeping our family going and allowing us to be as strong as we can for Camila. She is already proving to us what life is about with her strength and determination. 

Thank you,
The Chacons
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I know that it has been awhile since I have done a full update! Last I updated, Camila had a stable scan in March and is now approaching 13 months since diagnosis. In the words of our neuro-oncologist, her tumor is simply not growing right now.

Camila is still on the ketogenic diet, CBD/THC regimen and various other supplements. We recently had a nutritionist appointment to make sure Camila is getting all of the nutrients she needs, and her blood work came back great and she is still on the same growth curve (98%!). We also monitor her blood work (glucose/ketones) at home fairly often at home to try and maintain a ketone level above 3.0 mmol/L and a GKI between 1.0 and 2.0 which is considered therapeutic ketosis.

We still have not done any radiation or chemotherapy. We did have a a call with our neuro-oncologist last week to discuss the ONC201 drug that is now in Phase 2. Phase 1 being if it is safe, Phase 2 now to see if it is effective. The drug plays on a pathway (DRD2) which effects dopamine levels in order to cross the blood brain barrier (biggest hurdle with treatments for brain cancer) and promotes cancel cell apoptosis. Basically, tells cancer cells to die. We have gotten permission from the drug company to use the drug on a compassionate basis as Camila does not qualify for any of the trials currently happening due to age, not doing radiation, and the tumor not growing. The next step now, is to ask the FDA for permission.

We have not decided to use the drug or not. Camila is doing great right now, and we are excited for it to be summer full of playing outside and trips, and simply don't want to interrupt her with doctor visits, MRIs and blood work. She now knows what a white coat is, and what happens after waiting in a waiting room. She's smart and if you have met Camila, you will know, when she does not want to do something, she simply doesn't do it! We've had a couple of screaming doctors appointments recently and it is, truthfully, painful/stressful on us, and more importantly Camila. The quality vs. quantity question weighs on all of our decisions.

Overall, as a family, we feel that we are contributing to Camila's stability, but we know that the tumor is still there, and that is why we are open to learning and exploring any treatments that have been proven successful in killing DIPG cells.

LOVE TO ALL! <3
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It has been awhile since I updated the GoFundMe site, and I wanted to reach out and say a huge THANK YOU to the community and the recent donations that have come through. We are forever grateful for the support.

We had a great fundraiser last weekend for Camila! We raised over $8,000 dollars through Cops for Kids with Cancer and the CrossFit Tilt community! Camila had a huge smile on her face throughout the event and I want to thank everyone for making this a memorable experience for our family.

These fund really do help with out of pocket medical expenses that start up in the beginning of every new year as we continue to monitor Camila via MRI scans and visits to the Jimmy Fund clinic. This money also helps with increased grocery shopping and supplement expenses as we continue to have Camila on a medically monitored ketogenic diet.

I wanted to update too, that last Wednesday, Camila had an MRI scan and it came back as stable! There is no further growth, and her tumor is the same size as it was at diagnosis in May 2018!

We are humbled and overjoyed both by the support of our community as well as for Camila's stability. Thank you all again. <3
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I know it has been awhile since I've updated!

This weekend we got back from Disney. All the kids had a great time! The adults, were a mixture of exhausted and just as enthusiastic as to how magical Disney World can be!

We are very blessed to have been able to make the journey. It wouldn't have been possible without our team of meticulous planners who made sure that everyday was planned and we fit in all the time to do fun and exciting things for the kids - Nana, Auntie Abba, Tay Tay and The Shaffers for also making the journey. We also want to thank all who donated because your donations made our trip all the more special. Our next stop is Guatemala, hopefully early next year.

Camila still continues to do well! She is a happy two year old. We are thinking of extending the monthly visits to every other month as we don't see any areas of concern at the moment. That can all turn around very quickly, so we continue the ketogenic diet as well as supplementing her with proper nutrition. We have met with some homeopathic doctors, which is one area we are going to be exploring more to see if there are any other natural remedies to help Camila's body keep her cancer at bay.

Thank you all again for your continued support!
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Going to the hospital is a reminder that your child is sick. It never gets any easier to restrain your child so nurses can place an IV, or to place your child's limp, sedated body on a stretcher before going into a machine. Thankfully, we have been able to stay away, but yesterday we went in for an MRI to get an update on Camila's 'lump'.

We received the amazing news that Camila's lump is stable! It has not changed, at all, since her last scan in May. It still feels crazy to write that. This scan also solidifies the fact that Camila was incidentally diagnosed with DIPG and her prior episodes are not related to her condition. In all of our neuro-oncologists career, Camila is only the second DIPG case to have this happen.

After we talked about the great news, we ventured down a feeling of unknowns. Why didn't it grow? Was it the diet? If it's a grade 4, median life expectancy of 9 months, why hasn't it done anything? The simple answer from doctors is, "We don't know." And as our beloved Dr. Mimi puts it, "Camila is writing her own textbook." One common question doctors are asking about DIPG is, "How can we stop this mutation from growing and causing symptoms?" Dr. Mimi has told us now that Camila, not by name, is being watched around the community, around the country, as a child to watch to learn more about the cancer.

We are still pursing the Ketogenic diet, which Camila is thriving on. It takes a lot of Whole Foods runs, money and prep time to keep things interesting for Camila, but It is one of my outlets. We still have her on supplements (curcumin, multi-vitamin, MCT Oil and Frankincense) and always learning and exploring other beneficial, natural things we can give to her. We are also keeping our ear out for new findings and studies on DIPG and potential treatments. There are amazingly, smart researchers, scientists and doctors working at this everyday and I am so thankful for them.

Overall yesterday was exhausting, there were feelings of sadness having to put our little girl through a procedure she doesn't understand, elation on the news of stability, full hearted-gratitude for the support and understanding Dr. Mimi always shows us and a sinking, but hopeful feeling of this unknown space.

Other updates, Liam started kindergarten and is loving it, Lucia's new favorite thing to do is say 'No' to everything and Camila's new favorite is to play with blocks and go on walks. We also have plans to go to Disney World with the family in November! This will be so much fun for the kids. We are still attempting to go to Guatemala, and still need to focus on passport items, but we will get there!

Thank you again to all of the family and friends who have supported us in different ways. Love is what gets use through all of this. I've decided to create a separate Facebook page for Camila, as I think her story will help inspire other families. I know there are many families whose story has inspired me, greatly. I want to do the same. You can find the link below. I also started an Amazon 'Wish List' of things that we are constantly buying for Camila's diet. We have already received so much support through her GoFundMe as well! So thank you again!

I also want to bring up that September is Childhood Cancer Awareness month. Camila (it's hard to explain this fully) is almost lucky that there aren't chemos or other treatments to help her tumor because of what these kids have to go through. Reminder, these are kids who have to go through months, sometimes years of procedures, hospital stays, side-effects, etc. Kids with cancer often have long-term side effects of treatment, and occasionally second cancers derived from treatments of their first. Childhood cancer is only backed by 4% of the federal funding of cancer research. My hope is that going Gold for childhood cancer can have the same impact that the Pink in October has had for breast cancer, or the awareness for conditions like AIDS. Please kiss your kids and appreciate their health, as well as yours, and keep the kids who have to battle in your thoughts in September, and beyond.

Love to you all!!

https://www.facebook.com/CamilasArmy
http://a.co/4Ev3vmz
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$16,910 of $25,000 goal

Raised by 198 people in 11 months
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