Nikolai’s Unbreakable Spirit: Fight Against Cancerous Brain Tumor

Nikolai was born an empath with great regard for others, exhibiting an exceptional understanding of love and compassion from a young age. Niko continued to show and develop great character as he progressed into being an older brother two times over, loving and caring for his younger siblings.

Given Nikolai’s nature, he grew very fond of super hero personas. Halloween quickly became his favorite holiday and we would take advantage of the 11/01 day-after costume sales and Niko would be covered for the next year. He definitely got the money worth out of each costume as he wore them down with memories of each adventure. Every day he would have a new superhero pose or radical ninja move to show off.

It has been a very long and most challenging journey for all of us with may battles still ahead, but nikolai continues to soldier forward and inspire us all with his unbreakable spirit.

Magnetism was something Nikolai had coursing thru his body in excess. Every person who has crossed paths with Nikolai can’t help but mention how sweet his smile is and how there is just something so incredibly energizing about his aura. I could tell from a young age he was destined for greatness. Niko knew and could speak hundreds of words by age 1, was reading by 2.5 and swimming on his own by 3. He loved his independence and had no fears.

A few months after COVID started, Niko began to exhibit symptoms of emotional frustration this began to raise some red flags for us, as he was normally so well behaved. We chalked this up to stress from the lock down and tried getting him out more. It seemed like it was working at first until a week or so later when he began limping and complaining of “back pain” (which turned out to be intense headaches from high intracranial pressure) that we took him to the emergency room to get checked out. They did test after test and found nothing he was totally healthy other than him complaining of back pain and limping. They were ready to discharged him under instructions to follow up with his GP, until we refused to leave without an answer.

The ER dr. finally ordered a full body MRI and thanks to the meticulous work of whomever was combing over Nikolai’s scan, they were able to spot an “abnormality” at the base of his brain stem. This moment, while very difficult at the time, I am incredibly grateful for because the first MRI stopped at the base of his skull and only a small portion of the plum sized tumor was visible on screen. Thanks to the person, “the alarms” were sounded and they ordered more detailed CT and MRI scans.

Nikolai is a warrior who continues to break down barriers and defy prognosis & will not be defeated

I distinctly remember the doctor asking me over the phone after the results came in as I sat helplessly in the parking lot if I would like to connect to video chat. I think this stuck so vividly in my memory because it was the last thing he said to me before telling me that Nikolai had a large brain tumor at the base of his brain stem in his fourth ventricle that was blocking cerebral fluid movement, causing immense intracranial pressure and requiring immediate surgical intervention.

In less than 48 hours he would be whisked away by ambulance and taken to neurosurgery at Oakland kaiser to relieve the pressure with a drain before they go in a second time to remove the tumor.Nikolai has since had as much of the tumor as is safely possible removed. The surgery left him with “PFS” or “posterior Fossa syndrome”. PFS caused him to lose control over his emotions, physical balance, coordination, swallowing, eyesight and speech.

He has made serious improvements, going from a near vegetative state post-surgery to being up and attentive for several hours a day, giving us spurts of his playful personality. We are told the condition will continue to improve over

time, but tends to take “two steps forward and one step back”. We are given our first glimpse of thisas Nikolai has some regression to a less-verbal & physically mobile state than we were just at 1-2 weeks ago, for seemingly no reason.

Nikolai continues to soldier on and inspire us all with his unbreakable spirit.

This being said, he championed through the 6 weeks of radiation therapy and is on his way to 6 months of chemo next. Each step of our war on cancer has led to small victories which we have relished and felt to the core of our being. It has been a very long and most challenging journey for all of us with many battles still ahead, but Nikolai continues to soldier on and inspire us all with his unbreakable spirit.

If you would like to help you can simply donate to Nikolai’s Recovery Fund. Any donations and prayers are greatly appreciated.

We know in our hearts Nikolai will overcome anything in his path. Nothing will stop Nikolai, he is an unstoppable tank.

If you would like to help you can simply donate to Nikolai’s Go Fund Me page.

Any Donations to My Little Leaf go towards Nikolai’s medication.

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If you know someone suffering from any form of cancer and would like help or would like to learn more about CBD please visit Landon’s Health Hut

Paige Malone’s Fight For Life | Cannabis & Children

Paige Malone is almost six years old. Her mother, Anne, was 22 when she was born, her husband was 24. Paige was a beautiful baby, full of curiosity. She advanced over developmental milestones quickly, learning to crawl, sit, walk, and talk before other children her age. Anne and her husband even taught Paige 20 signs in sign language before her first birthday. An independent little girl, Paige was present when her little brother was born when she was about two. The family was getting a little too big for their current home and they decided to move. Lucky for them, they found a beautiful duplex, and moved in right away. The house was stunning, fairly new, with hardwood floors, a fireplace, granite countertops, and a large fenced in back yard that would be perfect for the children to play in. Anne and her husband were thrilled and once they were settled, Anne went back to work for the first time since she had had the children. She worked at night and her husband worked during the day so that one of them would always be at home with the kids.

Anne and her husband were told that she had become “toxic”, that the AEDs were so high in her blood that
she was actually overdosing.

Two and a half months after moving in to their beautiful home, on June 13, 2013, Anne received a call from her husband saying that Paige (who was almost three at the time) was acting strange. Her husband sounded scared and he was unsure of what was happening to his daughter. He explained that he had put Anne to sleep and after he walked away, she began to convulse, with her eyes rolling in to the back of her head. She was drooling as well and this episode lasted for a few minutes. Anne came home immediately and the family rushed to the ER. Six hours later, after a CT scan, blood work, and numerous other tests, the doctors sent the family home with no official diagnosis. They said that they shouldn’t see another seizure and the family headed home at about 6am. A few hours later, Paige was still acting funny. She was shaky and unbalanced. And then, while playing with her father, Paige collapsed in to another seizure. She stopped breathing this time and 911 was called. Paige was rushed back to the hospital in an ambulance. More tests were done, including an MRI. As a mother, Anne struggled to watch the doctors give her small child sleeping medicine and take her in to a different room for the test. The MRI was inconclusive and the family was sent home with an anti-epileptic drug. They were told Paige had epilepsy. Not two hours after leaving the hospital, Paige had a tonic clonic seizure. Back to the hospital in the ambulance, where Paige would start her first five day stint in the hospital.

While Paige was in the hospital, she had 13 more tonic clonic seizures. When introduced to a new drug, Paige’s symptoms seemed to calm down enough so that the family could go home. In two weeks, they would meet with doctors at the Children’s Hospital in their state, one of the best places available for treatment. While they waited for the appointment, Anne and her husband struggled to deal with the fact that their daughter was a completely different person. She was having trouble walking, she was shaky, her arms, legs, and head would jerk randomly. Paige’s parents kept track of these movements, as well as the larger seizures that were still occurring. Before the two week period was up, the family was back in the hospital with Paige. The symptoms were so bad that they couldn’t wait. Now, they found out that the movements they had been seeing were a new type of seizure, myoclonic seizures and complex partial seizures. More drugs were added to Paige’s extensive pharmaceutical diet and they leveled the symptoms out enough for Paige to return home.

Over the next year, Paige began to have more and more seizures. She was no longer reaching developmental milestones and had started to hurt herself on the once beautiful hardwood floors. She developed drop seizures, where she would just collapse. Her chin had to be stitched 8 different times from falls. Paige was no longer interested in playing with her brother or her toys. She was on four different anti-epilepsy drugs and couldn’t even support herself anymore. Someone had to help hold her up at all times. Then, the once lively little girl began to sleep for 20 hours a day. Anne and her husband were told that she had become “toxic”, that the AEDs were so high in her blood that she was actually overdosing. A month long stay in the hospital yielded a new drug cocktail, which Anne couldn’t take any longer. She hated the use of these drugs on her child and had begun to research other options in regards to treatment. None of the traditional medicines were working and Anne was done seeing her child so sick. Her daughter was deteriorating before her very eyes. This was a turning point. She read of a little girl in Colorado that was using cannabis oil for the treatment of seizures. Anne began to find discussion boards and groups of parents using cannabis oil to treat their children. Anne tried to tell Paige’s doctors that the cannabis was something that she wanted to try. They wrote her off and for over a year, Anne pleaded for them to allow her to use the plant.

Meanwhile, a year after Paige started having these seizures, the landlords who lived in the other half of the duplex started having neurological problems. After they dealt with their symptoms for six months, they asked to have the house tested for environmental issues. The Health Department came in and took samples from all of the walls and said that they would have the results in less than a week. The day before Thanksgiving, the landlord called and asked to come up to talk to the family. The landlord explained that the house (particularly the side where Paige’s family lived) had tested positive for methamphetamine residue. The test results showed the house was at 6,000% the tolerable limit. The family just sat in shock as the landlord cried and apologized, looking at Paige. They left immediately, having to leave behind everything but their clothes and dishes. And after a quick Google search, Anne found the previous owners. They were serving time in prison for the manufacture and distribution of meth. The family’s community rallied behind them and they were able to start new in a new home. Three months after starting over, Anne found a doctor that had experience in treating children with cannabis.

Paige began to see this doctor and Anne got a license to give her child cannabis. The first day that Paige took the CBD oil, her seizures reduced by a third. After a week, she was experiencing less seizures and was beginning to gain back her milestones. The little girl the family missed began to return. But it wasn’t over, as Paige now had to detox from the heavy AEDs that she had been taking. One of them, Onfi, took eight months for her to withdrawal from. Anne and Paige’s doctor decided to add THC to the CBD and they began to see even better results. On the last day that Paige took Onfi, Anne tripled the dose of THC in her oil, and Paige only had six seizures that day, down from 100+ the day before. The next day, it was only three. The day after that? Zero. Paige had no seizures for a month, a new record. She didn’t have to wear her helmet any more. Then, Paige had another tonic clonic seizure in the middle of the night on December 1, 2015. Since then, she had not had a single seizure.

She has a hand in growing her own medicine and not only loves the flowers that help her but all kinds.

Now, Paige is speaking and aging developmentally. She has a hand in growing her own medicine and not only loves the flowers that help her but all kinds. Anne says she loves to pick dandelions. Paige takes four doses of oil every day that Anne makes. She calls it FECO (Full Extract Cannabis Oil). It is made by extracting the THC/CBD from flower with Everclear. All of the medicine that Paige receives is lab tested. She takes the medicine orally via syringe. Thankfully for this family, they did not have to relocate to Colorado, as their doctor lives in the same state as they do. Even though it is a drive, Anne says she would’ve moved across the world for this doctor to treat Paige.

The family is incredibly thankful for the power of cannabis and what it has done for Paige.That includes the extended family. While they are religious, they have witnessed Paige go from a sick little girl back to the wonderful child she used to be. Support from the family has been great for Anne and Paige and they are doing what they can in order to spread awareness of cannabis as a medicine for children like Paige.

Anne has her daughter back, thanks to cannabis, and she had some words for other mother struggling with this situation. Having to watch a child suffer is heartbreaking and trying cannabis could have provided a shortcut for Paige, instead of taking all of the AEDs. Anne has this to say, ” I want to spread the message that cannabis works! That it has given me my daughter back! I would tell other mothers to try cannabis if it is an option before traditional medicine. It has been our experience that traditional medicine robbed us of two an half years. I would also encourage others to make it themselves. It is so simple! It helps to make me feel like I am taking an active role in my child’s health. I know that the product that I am making is pure. There are a lot of people that are trying to profit off of sick children and it makes me really sad. The other bit of advice is to not be afraid of while plant cannabis, not just hemp. In our experience that is where we have seen the most improvement. And also to not be afraid of THC. I believe that THC made the most dramatic impact.”

Show your support with #TeamPaigeStrong and #PurpleforPaige