HAPPY 5th BIRTHDAY NICHOLAS!!!
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Yesterday is Gone…… Tomorrow is a Mystery…… Today Is A GIFT………
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Thank you for being a friend and learning the journey of Nicholas a.k.a. "Super-Bat-Spiderman" and I. The journey has been very hard. Our journey has seen us lose our home, my job, and Nicholas ending up with a long list of illnesses. Though the story is sad, there is optimism that this situation will turn around for the better.
On 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 Sutter Memorial.
Life as a working single mom raising 4 boys one in college, was challenging but at the end of the day very rewarding. Then within a blink of an eye, you’re plagued with one hardship after another, sometimes with no time to take a breath in-between. The choices you have to make and or made for you are endless, and impact the entire family.
Nicholas and I have yet to return home since Oct 2006, if he’s not in the hospital were at the Ronald Mc Donald House in Sacramento on out patient continuing working through his medical conditions. Since diagnoses, limited to no income, and the uncertainty of Nicholas health from day to day, my children and I have spent more time apart then together. On Mother’s Day 2007 the struggle became worse with the lost of my vehicle, then my extended leave of absences where I worked for over 7 years and was one of the few Million Dollar Sales Executive, was made permeate by my employer in Oct 2007. Now I’m faced with trying to figure out how to pay the very high cost of COBRA, as my family especially Nicholas can not be without good medical coverage. The next sacrifice came in November 2007, due to toxic mold not only did my family have to vacate our Healdsburg Home we rented and lived in for over fourteen years, advised with Nicholas medical problems including weak immune system all our personal items should be taken to the city dump.Learn more about mold here .
Our Vision:
• To secure fundraising and donations to get back on my feet.
• To secure a stable 3 or 4 bedroom home that is suitable for Nicholas’ medical conditions in Healdsburg, Windsor, or Rohnert Park in the County of Sonoma, California.
• To secure a reliable vehicle: Nicholas’ chronic & long term medical conditions require frequent follow up care locally and out of town, family needs the ability to transport a family of 4 with room for a special needs stroller, medical equipment, supplies and navigate through all weather conditions.
• A smile for Mommy: At face value Nicholas appears to many as a normal 4 year old, however this is far from the truth, spend 24 hours with him and you’d have a better understanding of the daily challenges of the illness, anxiety and pain he’s plagued with and steals his life. Nicholas has constant pain, unable to tolerate food, can only have water or ice chips, he’s currently feed by NG tube, he’s still is having a allergic type reaction to the formulas, and may need to be put on TPN & Lipids. He’s either constipated and unable to move his bowels for months or has severe diarrhea with up to 20 watery stools a day, both send his pain through the roof. Nicholas is a very sweet loving little boy, however becomes very aggressive trying to deal with the pain to the point that he screams, bangs his head hits, kicks and pulls my hair. During theses episodes that are several times a day I’ve lost several teeth and others broken and in need of major dental work immediately, which I’m unable to afford.
Thank you so much for reading. Anyone can help, so please contact us. Even if you cannot donate anything or take on a project, please pass this along to whomever you believe can help. Thank you.
Peace....Love...Happiness
Juliana
Kevin
Matt
Jake
Nicholas
Glen
Jamie
McKenna
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