Alaya's Fight to Cancer Free
Nikki and Nick are amazing parents to five little girls, Kianna, Chloe, Acacia, Oliva and Alaya, all under the age of 16. Alaya, the youngest of the girls is a bright and vivacious three -year -old, full of energy and always wearing a smile.
Unfortunately, on Saturday, May 21, 2016, this beautiful family’s world unknowingly changed forever.
While the girls played together Saturday night, Alaya accidentally hit her head on a doorframe. After showing signs of a concussion, she was brought to the Emergency Room. Nobody would have ever guessed the news that came with it, she was not injured by the hit; Alaya was diagnosed with a large brain tumor. She was immediately rushed to the Pediatric ICU for further evaluation. On Monday May 23, surgeons went in to remove as much of the mass as possible. After a very long week of uncertainty, IV's, heart monitors, and sleepless nights, we were given the word on Friday that Alaya indeed has brain cancer. A rare and very aggressive form called Atypical Teratoid/Rhabdoid tumor. This type of cancer affects mostly children under the age of three and accounts for only about 1% of all brain cancers. Our hearts are shattered and our minds are in disbelief. Although we have the love of our family, we need help as we start this very long and emotional journey through Alaya's cancer treatment.
Alaya will need to start aggressive treatment this week, requiring eight different types of chemotherapy, radiation and other alternative therapies to try and rid this terrible disease; travelling between their home in Vermont to hospitals in New Hampshire and Boston.
Contributions from this fund will benefit my sister Nicolle and her family directly. With Nick being the only source of income for the family at this time, donations will go towards medical bills, medical expenses, and transportation costs.
Any donation would be greatly appreciated. I also ask that Alaya and our family are kept in your thoughts as we start this long journey towards being cancer free! #AlayasFight
“Happiness can be found, even in the darkest of times, if one only remembers to turn on the light”- Dumbledore
It has been quite some time since the last update on Alaya’s journey. Between then and now a lot has happened, with each ugly moment a beautiful one to follow (hence the quote). Most recently, there are still no changes in the tumors found back in January, unfortunately due to the original tumor, Alaya has been diagnosed with stenosis (the narrowing of an artery). This narrowing of the artery in her brain has caused a lack of blood flow to the left side of her brain and she has been experiencing mini strokes (TIAs). Yesterday she underwent a procedure never performed at Dartmouth before, an indirect bypass of the subtemporal artery. I will spare the details but this was done to allow blood flow back to that artery and to the left side of her brain. The surgery went well and she has been recovering in PICU. She has had some swelling in her face because of the blood essentially filling back in causing her some pain but she is such a trooper. Hopefully within the next couple days Alaya can return home and continue to recover in time for her 5th birthday next week!
Nikki has continued to treat Alaya’s condition with holistic medicine, which includes the CBD oil, other essential oils, and a specific Ketogenic diet. Next week will also be a year and a half since Alaya was initially diagnoses with ATRT, despite this difficult journey we are so thankful for this strong baby girl still being here and pressing on, and her just as strong Momma who has done nothing but give her all and very best. Alaya has defied all odds and will continue to fight on as her journey continues. I personally feel so blessed to have this amazing family.
Please continue to share this post and prayers as much as possible. Nikki is still in dire need of donations to continue helping Alaya heal and fight, medications are so expensive and her CBD oil is not covered by insurance, any amount is appreciated. I will do my best to stay on top of updates.
Hello Everyone! I apologize that there have not been any updates on the GoFundMe page in quite some time. To get everyone caught up, Alaya has received multiple rounds of chemotherapy and radiation. In August, we were teamed up with Boston Children’s to harvest her stem cells in case they are needed since Alaya has become neutropenic (low immune system) with almost every round of chemo. Between September and October Alaya was hospitalized again, but this time for sepsis (severe infection) due to her already weakened immune system. She started to recuperate and was finally able to celebrate her fourth birthday, Christmas, and New Year’s! Through all this time, we were given good news that Alaya’s MRIs had shown no change since the reduction of the original tumor. Nicolle has tried to continue Alaya’s regimen of CBD oils, which have not only shown remarkable results in her cancer treatment course, but has also given Alaya so much comfort while going through painful procedures like chemo. Unfortunately, Alaya has been unable to receive the amount her body needs because of the cost; it takes about $500 a month to meet the BARE MINIMUM needs for her CBD oil (dosing is weight based). Although medical marijuana is legal in their home state of Vermont, it still is incredibly expensive.
2017 met us with even harder times than last year. Come late January our lives came crashing down again, Alaya’s MRI revealed although the original tumor was stable, there were at least three new lesions found in various areas of her brain. Adding to the heartbreak, Nicolle is now struggling to raise her two girls (Alaya and Kianna) as a single parent. It is the worst pain imaginable to see people you love suffer and you’re just as helpless. The last few months have been more physically and emotionally draining than ever before, which I didn’t think was possible.
My family needs help now more than ever to get through this time. Any amount of donation, prayer, positivity is very much appreciated. Please continue to share our posts and links to spread the word!
Thank you all so much!!!
HUGE UPDATE: We have some good news to report, and some major information to divulge! After hearing Alaya's initial diagnosis (we were told three days before the AT/RT diagnosis that some of the cells proved to be cancerous), we decided to tackle this head-on. We employed a quick and heavy info gathering task force! Many amazing friends and family stepped up to assist. The consensus was clear: Use CBD/THC in tandem with chemotherapy, as recent studies have proven chemo to be far more effective when paired together with CBD and THC.
CBD weakens cancer cell membranes allowing the chemo to be more effective; CBD/THC is a very effective anticarcinogen itself; and the combination has been shown to trigger the cancer cells to "remember" how to die via Apoptosis. We are happy to say we have seen AMAZING results thus far.
After two rounds of chemotherapy in tandem with her "home" treatment, Alaya's tumor has shrunk remarkably ! The original tumor was somewhere around 6-8cm, and was reduced by 60% upon her initial surgery/craniotomy (thanks to the amazing neurosurgeon Dr. Bauer and the staff at Dartmouth). The remaining 40% has been successfully reduced via treatment by ANOTHER 75%! We are now exploring our options to remove the little remaining cancer (@10% of the original size). It's still a tricky situation, as the remaining 10% lies directly on her artery feeding one hemisphere of her brain meaning that surgery may not be an option. Dr. Bauer is willing to remove more of the mass, but has major concerns about removing anything abutting the artery.
We will be heading to meet with the leading AT/RT specialist in Boston this week, they want us to consider trying a new technique to attempt to "more safely" delivery radiation (Sterotactic Radiation Therapy).
Radiation, even when all precautions are taken, has devastating long-term side effects.. So needless to say, we are not sold on this procedure at all yet. However, we are willing to hear them out before we re-assess and decide the next course of action. Which would be one of three; 1) Continue with chemo protocol: DFCI ATRT 02-0294; 2) Once continued protocol is done, move to radiation therapy; or 3) Switch to high dose chemo. This is no small choice, as continuing down the path of radiation or additional surgeries can come at enormous costs ie: permanent paralysis from surgery, or life-lasting side effects from chemo and/or radiation.
For fear of alienating, or offending some folks we initially thought it best to keep mum about our treatment decision. In short, Alaya was the youngest, quickest member yet added to the VT Marijuana Registry (Thank you to the State of Vermont and aunt Alexis for making it happen ASAP!) and she was immediately placed on CBD, then CBD/THC as a supplemental treatment before her chemo even started. We should also recognize the amazing group at the Enthusiast Smoke Shop in Rutland VT for supplying us with medicinal quality pure CBD and for staying open late numerous times for our frantic "re-supply" runs. And a HUGE THANK YOU to the Champlain Valley Dispensary for working out a custom-tailored CBD oil designed specifically for Alaya's dosage needs. Our brother-in-law Erik St. Croix has been working hand-in-hand, daily with the dispensary to fine-tune Alaya's oils, subsequently it will be sold and marketed, hereafter, as "Alaya's Oil" for the countless other children that can be assisted by this amazing product!
We are so touched by all this. EVERYONE has been incredible. We are SO grateful to have such an amazing group of friends and family, you are all Alaya's heroes and we owe you from the bottom of our hearts. From those who help hands-on, love and support from family, to the donations from those close to us... and even those who know nothing but Alaya's story.
So in closing today, our battle continues, but with newfound hope and options. We feel we would be wise to consider what the team in Boston has to say, but we may also step back from chemo and radiation altogether and gauge the effectiveness of CBD/THC for the remaining 10%. We will decide what is best for this beautiful little girl and we will update you all as often as we can here.
Our one major concern is the fact that no insurance providers will cover the CBD, hence our frantic fundraising efforts (made possible by aunty Amanda). The money donated has helped us keep life normal while Nikki and Alaya spend huge amounts of time away from home, helps us cover any extenuating medical and travel costs, and MOST importantly... it allows us to continue to provide the highest quality CBD/THC for Alaya's treatment. It is potentially one of the most important aspects of her treatment thus far, and provides Alaya with actual quality time, free from the pain, nausea, and the other side effects of her cancer and treatments.
If you can continue to help us in Alaya's fight, or help spread the word! EVERYTHING helps and you are all AMAZING<3 !!!
- Nick and Nikki
This week marks the first month of Alaya’s cancer journey, which has obviously been nothing short of a crazy rollercoaster ride. Alaya is slowly recovering from last week’s chemo. She is still barely eating or drinking, requiring IV fluids and TPN. Her hair is falling out. Unfortunately the fall out as been so badly and what is left has become extremely matted that Nicolle had to shave her head.
Since Alaya has been vomiting so much and not eating Nicolle was concerned and demanded an MRI to ensure there was no new growths, especially since persistent vomiting is what lead to Alaya’s diagnosis. On Monday, we got good news that there were signs of recession and no new growths in her brain, or anywhere else!
Wednesday Nicolle and Alaya were able to go home after a miserable week at CHaD. Alaya’s doctors are looking forward and have discussed the need for a G-tube, which is a surgically placed tube into the stomach for medications and feeding. At the moment, we are just trying to have Alaya enjoy time at home with her family before going back for her inpatient 80-hour chemo. Round two will start early next week but until then we are enjoying family time, sunshine and Alaya’s smiles!
The support and donations we have been receiving is overwhelming and very much appreciated! We need all of you to help keep Alaya’s story out there! Very soon, we will be making an important announcement concerning Alaya’s care and cancer treatment, which will bring an even greater need for support. Keep the positive vibes and prayers coming!!
Omg!!! Thank you all!!! I don't have the words to express my gratitude/heart swell right now... all of this is soooo overwhelming in so many different ways. We knew this kid was born to make a difference in this world , I guess we just never realized the magnitude
Seriously at a loss for words.. I cannot thank everyone enough. I really can't believe we got this much support in less than 24 hours. I've also had many folks tell me they are waiting until later in the week to donate a bit (pay dates, bills, life, etc..). You are seriously amazing, all of you. Thank you from the bottom of our hearts!