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