Mokihana’s FIGHT against Neuroblastoma
Aloha,
Thank you for taking the time to read our story behind our GoFund me account. We understand that many are going through rough times, but we humbly ask for your continued support and any contribution to help my family.
Meet our Mokihana, a sweet rolly-polly, chunky,robust little toddler, gets into things, excitable & funny, caring and lovable, playful with his brothers, loves riding his bike, quad, scooter and going on walks and gets into mischievous moments, he loves PJ Max, spider man super heroes, loves to hear you read books his favorite is Brown Bear, He is affectionate and lovable, always wears a BIG SMILE, he will say
“I love you and sweet dreams” to his mom & sometimes dad & brothers & Mama’s before this illness.
NOW, at present time our Mokihana, has Nueroblastoma Cancer Stage 3 & 4 in his stomach & skin cancer in his legs and feet, and as we move to fight this beast of cancer we are encountering that the tumor is pressing his organs and has grown around his blood vessels.
Mokihana no longer resembles our robust chunky rolly-polly baby boy, although he will sneak a smile here and there for mom. He is confined to hospital bed with his IV tube, drainage tube for his lungs, blood pressure monitors, chemo-treatments, medication given orally and intravenously. He has lost a lot of weight & his collar bone, arms, legs isskinnier and boney, unable to walk for a lengthy period, possibly the discomfort of skin tumor within his feet and legs. His life fight, will be a long road ofstruggling, praying & miracles. Mokihana, is resilient and has a high tolerance for pain. It maybe a sign of strength, but we find it quite scary because he will not express all the pain one can imagine he is encountering. He still finds time to smile and enjoy the little things while being hospitalized. Dad & Mom, left their home-town Mililani, Oahu, to explore cheaper cost of living to raise their family in Corpus Christi, Texas, without any family members nearby to help. Dad, has & is the only source of income, while mom remained home raising their 3 boys. Since, Mokihana’s hospitalization she has remained at his bed side insuring he has familiarity, also does face-time with Maunaola (twin) & Blaizden (big brother).
Dad, continues to work but when he needs to take off it is time without any pay. This family anticipateshardships & large expenses for medical expenses, medications, travelling, specialized surgical procedures, treatments and livelihood necessities and pray that this go-fund account will offset some of these expenses that we are anticipating.
Luckily, out of town family members are trying to manage going to help with the two brothers who are at home while mom & dad continue to maintain consistent family unit while trying to be positive fortheir family.
On January 15, 2021 our trauma began, when webelieved Mokihana was dealing with a simple bout of constipation as he dealt with sore stomach, lack of energy, loss of appetite and wanting stomach rub that soothed his pain during his sleepless nightly pain interruptions. fter two different emergency hospitals visits that recommended over the counter Mira-lax, suppositories, apple juice, etc, xray that showed he was definitely backed up. 2nd visit different emergency, assisted with performing enema flushing him out, also taking x-ray. Both times mom requested for ER doctors to take an ultra sound or CT scan, both declined, because x-ray confirms he was constipated & did not have a fever. Parents, insist when you know something is wrong with your child insist that doctors check it!
January 31, 2021, our third emergency room visitand a diligent inquisitive radiologist who saw something odd, pursued to move forward with a CT scan, and found a mass 11cm large in our Mokihana’s stomach!
How??? Did this get mis-diagnosed or missed through his 3 years of his life. Not to mention it takes 13 years, to become a radiologist, so how was it missed from (2) previous x-rays ER visits, and pediatrician annual checkups?
The life fight begins as our warrior Mokihana, is admitted into the Pediatric Intensive Care Unit, intravenous medicine begins with his blood pressure cuff reading 180/130 and morphine for his stomach pain. Our baby boy now lay calmly on a hospitalbed scared, confused and whispering in a rhapsodyvoice begging “please! please! I want to go home please”! heart-breaking plea that a parent cannot fix.
Now, a series of testing prodding, blood testing Xrays, Bone Marrow Biopsy, Ultra-sound, Echo-cardio-grams, CT scan, MRI’s, MGIB scans, Kidney testing before we can confirm what type of mass is within his stomach. His blood pressure is so abnormally high so they decide to do a ART-LINE (straight from the arteries) for a what we hoped would bring a lower accurate reading. Although, readings were lower it is still at an uncontrollable level, so he continues to be on three types of medication for blood pressure. His heart rate extremely high for a toddler may cause a heart failure for an adult.
Parents, scariest part is hearing the results of all the testing come in. Our warrior Mokihana, has officially been diagnosed with high-risk stage 3 & 4 Neuroblastoma Cancer (nerve cell cancer) in his stomach, and skin cancer in his legs and feet. This horrid tumor is pressing against his organs and wrapped around his blood vessel, which is causing his BP & HR to spike uncontrollably. Additionally, he has accumulated fluid in/around his left lung and is currently hooked up to a drainage tube. We continue to await other results from testing to determine genetics, historical information to determine how it mutated to the level it is now. The best way to attack this tumor doctors move forward with Chemotherapy immediately, hoping to shrink or disintegrate the tumor so a plan to surgically remove part of the tumor can proceed.
This will involve many more doctors and hospital(s) series of radiation and stem cell transplant therapymore chemo-therapy and a host of side effects from treatments, which doctors have informed parents it will be a minimum yearlong, traveling to other hospital(s) for radiation and transplant procedures & treatments.
UPDATE 04/19/2021:
The Life Fight for Our Warrior Mokihana Kaleoikaikao’kalani (mighty voice of heaven) Fernandez.
3 MONTHS IN and the FIGHT is still going on, since learning a new word “Neuroblastoma Cancer” & how rare it is how aggressive it can get to attach to a child organs, tissues and nerves. This fight is far from over for our family. We will not give up!!
Between his bouts of treatments and hospital stays he tries to remain AFFECTIONATE & LOVABLE at every HAPPY MOMENT HE STILL “SMILES”. Mokihana, has met a friend who is fighting a similar battle her name is Mila, he calls her his best friend while being in hospital. He smiles brightly and shares a bond that none of us will ever know, they compare butterfly incision for their ports and band-aides that doctors use after each round of chemo treatment. He will face-time his brothers and scolds his twin Ola not to drink apple juice or eat candy because he will have rotten teeth & questions his older brother Blaizden what he is playing on his switch, wanting to know if he can play it too. Goodmoments come short, and we make the best for it.
This Neuroblastoma Cancer Munster lingers within his fragile body with no scheduled time for it to go away or not. He has completed monthly inpatient 4 Cycles of Chemo-treatments. He has changed from our roll-poly chunky happy robust boy a not fearing 3 yr. old toddler. Since, being diagnosed with thisdamn Neuroblastoma cancer, its treatment is stealing his life, like a thief in the night overtaking his body and it continues to take our Mokihana’s energy and his excitable demeanor. It has stolen his weight, muscle & hair, his face is pale & fingers, feet and toes are thin and greyish, his balance is some-what awkward tippy toeing, his voice is scratchy and low, his temper can rise in half a second, emotional behavioral outburst result in throwing, screaming biting and hitting, not being able to walk from fatigue, he throws up unable to hold his food or liquid down, has diarrhea or constipation that results in skin tear, sores in his mouth, his face becomes swollen resembling the puffer fish.
What this monstrous thief is taking is his youthfulness to enjoy a normal childhood without medications, treatments and recoveries.
We are fearful and scared for the upcoming months as the time to do updated CT-Scans to determine if any of the past months of Chemo has made a difference in shrinking his abdomen tumor or diminished the one in his legs and feet. We are hoping that it will be a positive outcome to move forward with removal yet a scary lengthy process. The removal of his tumor surgery can last between 10-14 hours with a 2-to-3-week recovery, then another surgery that will be out of town.
His medication life consists of a bunch of chemical concoctions put together that has negative side effects that can take his hearing, damage his heart & other organs, but we pray it’s positive for every treatment he foregoes. How do you choose the right care ??? Mom, continues to be by his side in/out patient, administering the necessary medication while at home between his treatments. A battle that our guy knows to well come when he sees the syringe filled with oral meds, or the needle that means it’s a shot that’s coming next.
His cries are heart breaking at the same time so angry from all this he is undergoing and just wants to run around without caution or restrictions because his blood counts are low, his immune system is not the strongest and cannot be around people. We, would never want anyone to have this childhood cancer any other cancer! Please continue to support, pray and share:
We, humbly ask for your consideration to donate towards medical, travel, hotel & other financial expense that we will incur for:
The Life Fight for Our Warrior Mokihana Kaleoikaikao’kalani (mighty voice of heaven)
Fernandez.
To help with the medical & other related expenses, Mokihana’s, GMa Robin Kaowili and Mom Pauline Agtang started a Go-Fund Me account. Our goal is to raise 65k or more for the care and support during this time of uncertainties.
