PATIENT SPOTLIGHT: MEET MINA

As told by her mother, Reyna:

Mina always was vibrant active and a very healthy child overall. When COVID first hit and the stay-at-home orders started in Hawaii we started noticing slight changes in her balance nothing alarming at the time but we recognized something different. She was clumsy as every normal 4-year-old, however one particular day I noticed her walking up the stairs to my office and I reminded her not to touch the rails she seemed almost inebriated walking up. I called her pediatrician and we had a teleconference appointment which lead to an in office visit, of course her balance was fine the time of her visit and we scheduled an MRI for late August. The early morning of July 7, 2020 we rushed her to the ER as she was complaining of headaches and she was vomiting. News came back that the CT scan showed a 4cm mass in her brain. She was admitted into ICU and two days later scheduled for surgery to remove it, before the pathology report was finalized we heard from the neurosurgeon that he could tell it was malignant. We immediately met with an oncologist team and about 10 other doctors- everything was a distant haze… words, names, treatment, procedures all seemed to fade into a whirlwind of noise.

Our little girl had Medulloblastoma Cancer. We seemed to be hit with bad news and more bad news and everything was so confusing and seemed to be happening too fast for our minds to process and we felt extremely vulnerable. She was in the hospital from July 7, 2020 – August 1, 2020 and she was only discharged because we had to fly out to Houston to meet with the oncologist team at MD Anderson and Texas Children’s Hospital to start her radiation and chemotherapy so we went from the hospital straight to the airport.

A few months prior to this, I woke up at 3am to a St. Jude commercial and something prompted me to visit the site and donate. I saw the faces of the young children and it touched my heart. When we learned of Mina’s diagnosis I knew somehow St. Jude needed to play a role in Mina’s cancer journey.  Hawaii does not have the Proton Radiation machines and we wanted to minimize her radiation exposure. Lucky for us we have PPO insurance, and this gave us the option to be treated out of state, we decided to have her chemotherapy treatment plan at Texas Children’s Hospital under the St. Jude Protocol. After St. Jude ran their own pathology report and Fish testing, they determined a more intermediate type of cancer and added three more rounds of chemotherapy. At this point we had to unexpectedly uproot our family of nine due to the added rounds of chemotherapy. Keeping the family separated was just not an option for us especially during these unprecedented times. Having cancer is life changing enough as it is, having cancer during COVID well that’s a whole added level of stress and anxieties.

My husband had to close shop on his business back home but fortunately I was still able to work remotely. Our other children were able to do school remotely as well. So here we are Mom, Dad, Nana and our seven children in a rather unorthodox situation, staying at home all day giving new meaning to marriage, parenting, teaching and learning all the while watching our little girl suffer through radiation treatments and chemotherapy.

Four of the seven rounds of treatment and chemotherapy required her to be admitted for three days in the hospital. She suffered through headaches, fevers, extreme nausea, fatigue, mouth sores, hair loss, weight loss, hearing loss, swelling near her optic nerve which caused vision changes, skin rash and sensitivity from the radiation emotional and physical distress.

Nine months later and we are nearing the end of our Texas journey. Our little girl showed courage, and was extremely resilient throughout this unfortunate situation, however we thank God for all our many blessings and we still have our little girl. The entire family pulled together and as difficult as this was for us all we are stronger than ever and have a newfound deep appreciation for all our sacrifices as a family and one another.

I especially want to thank Sky High for Kids as they certainly celebrated all of Mina’s courage and strength as well as the entire family by providing endless activities. Being at home keeping our immune deficient little girl away from everything including playgrounds for fear of her catching anything really can contribute to depression for active kids.

Although Mina’s radiation and chemotherapy treatments have come to an end, she is left with the residual side effects which all still have not shown its ugly face. She has to continue on antibiotics and anti-nausea medications for at least six months. She will continue to be monitored closely for the next five years with MRI’S and Spinal Taps every three months, then routine checkups for the rest of her life. Cancer sucks but here’s to hope, faith, love and support as these all play an integral part for families battling cancer. Texas is a wonderful playground for children and while Mina is thriving, and her blood counts increase and her immune strengthens we are excited to experience a little bit of the activities Texas has to offer before we venture back home.

 

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