It seems Nicholas is struggling his condtion has declined and we need help NOW $5000 to get to the Doctors PLEASE anything would be appreciated time is so so crucial please as well prayyyyyyy we need help NOW
-Hi Im Nicholas my mommy will tell my storyOn October 6th 2006, just six weeks after turning three years old, Nicholas was taken by ambulance to California Pacific Medical Center in San Francisco to have a CT scan under sedation to investigate an ear infection not responding to several courses of antibiotics. At approximately 11:45 PM an ENT (Ear Nose & Throat) doctor stated after looking at the scans wasn’t comfortable treating the ear infection however one of his colleagues would be by in the morning. Less than 12 hours later the doctor that greeted me sounded more like an auctioneer, and the only words I clearly heard were; your child developed a Hematoma from the ear infection that’s impeding the brain and he needs emergency or could Die. Within two hours Nicholas underwent a right temporal Craniotomy, two hours later told the surgery was successful; this was Saturday October 7th 2006. The next few days was assured that while Nicholas still didn’t seem himself, was recovering nicely; in fact on Tuesday morning October 10th 2006, told he’d probably go home at the end of the week.A few hours later the doctor returned stating something had changed and a team of doctors would be by shortly to speak with me. What seemed like an eternity was about an hour later when greeted by a hematologist lending Nicholas has a blood disorder then the other doctor stated she was an oncologist. Everything goes black for a few seconds and voices all around suddenly sound miles away, tears stream down your face as you want to ask a million questions but can’t speak and feel your legs ready to collapse. The official diagnoses; Burkitt’s Lymphoma, Grade 4, Class C, further investigation showed Bilateral Kidneys, Central Nervous System and Left Ethmoid Sinus. Learn more about Burkitt’s lymphoma here.The chemotherapy treatment needed to start Oct 11th 2006 informed it was very aggressive, and would be receiving nearly 3 years of therapy in 9 months. Then informed, because both the cancer and treatment were very aggressive and due to the location of the Cancer, Nicholas would need to remain hospitalized 9 months or longer. Nicholas ended up in ICU after his first and second round of Chemotherapy due to many complications. Becoming deeply concerned about his treatment and care requested him to be moved to another hospital. Arrived at UC Davis Children Hospital Nov 29th 2006, receive his third round of chemotherapy second week of December 2006, which resulted in Nicholas having surgery Christmas Eve and sent to ICU where he remained until 2nd week of January 2007. The fourth round was given January 27th and once again many obstacles faced, so unfortunately due to major on going complication he was only able to tolerate 4 months of chemotherapy in fear of loosing him to toxicity; however did remain hospitalized for 10 consecutive months. Some of the complication interfering with his therapy, included severe reoccurring blood infection and complication with his whole GI system Released July 5th 2007, to the Ronald Mc Donald House to be monitored on out-patient, then re-hospitalization July 26th 2006, with a temperature nearing 105 and a rare blood infection called Bacillus Species.Everyday I face the cause and effects, from the treating doctors, insurance approval, which continues to have a significant impact on Nicholas health, especially when they won't approve or allow him to see a specialist in the field of his rare diagnoses. It took over 5 months for Nicholas GI system to be looked at again, which was done December 18, 2007 and confirmed to have Eosinophilic Esophagitis Dec 24, 2007, which means that his white blood cells are not protecting him from infections and bacteria, they are instead attacking his body. His diet prior to this diagnosis was limited not by my choice, couldn’t get him to eat much, because he would have a great deal of pain from the small amounts he did consume. The findings and intake of Gatorade, otter pops, fruit snacks and occasionally a few bites of chicken soup or some French fries, wasn’t enough for the doctor to do anything gave me the cause and effects speech. To learn more about eosinophillic disorders, please visit The Cured Foundation and watch their youtube video.Nicholas was admitted to Sutter Memorial Sacramento hospital January 10, 2008 for failure to thrive, during his 9 day stay an NG tube was placed and started on an elemental diet. He was also officially diagnosed with Autism Spectrum Disorder; PDD-NOS. To learn more please visit learn about Autism here.Nicholas was “Clinically diagnosed†with Ataxia Telangiectasia, which is a rare blood disorder, because he was hospitalized and other medical finding the insurance finally agreed to allow the blood to be drawn and set to UCLA & City of Hope for evaluation. Results take approximately 12 weeks, and should have an answer lather part March first week of April 2008. Positive thoughts for results to be Negative…..(Ay-tax-ee-uh Tel-en-jec-tay-zha) or A-T, a very rare blood disease. Learn more about A-T, click here. Nicholas was discharged about a week later from SutterThe journey has been very long since Nicholas struggles began in October 2006, and had no mercy with its devastating effects on the rest of my family. Just 6 short weeks after turning 3, what was thought to be an ear infection turned out to be Cancer; African Burkitt’s Lymphoma EBV positive. Nicholas was “NOT†able to complete chemotherapy treatment due to toxicities and long list of other long term illness. In December of 2007 we were to learn that Nicholas suffers with EE, which most of you don’t know or understand and the urgency to get Nicholas to Cincinnati; is linked and can cause the Cancer cells to breed. His cancer is silently awaiting its host to manifest, any infection Nicholas gets and with other Immune disorders he gets many and they need to be taken seriously as it could be the one to start transition on his B cells. Currently there is No Cure EE and its devastating long term potentially fatal effects, only treatment and maintenance.
