Camilo, United States
Late November of 2021 Camilo had be under the weather for a couple of weeks. Camilo’s symptoms were; vomiting, nausea, headaches, fatigue, fevers, loss of appetite. I took Camilo to 2 urgent cares & 1 hospital which all stated he had a viral infection.
On December 14th, 2021 I took Camilo to Piedmont Hospital, after sitting in the waiting area, we were bought to the back. The nurse started to exam Camilo, his eyes started having erratic eye movements, the nurse asked about his eyes. It had been the first time his eyes had done those movements. The doctor was called in, Camilo was discharged and was told we had to go to Children’s Healthcare of Atlanta (Scottish Rote). When we arrived to Scottish Rite, I was asked several questions about Camilo’s symptoms. Camilo had a CT Scan done, a doctor & a Child Life Specialist came in at 11:30pm, I was told a tumor was found in his brain. The tumor is located in the middle of the brain, its golf size. Cami was moved into the PICU.
The following day Cami had an MRI, several tumors were discovered in his brain and spine. The doctor told us, the type of cancer is possibly Medulloblastmo but would know after the biopsy has been completed. Cami had surgery for his internal drainage (shunt) and removal one tumor which was sent off to be biopsy.
On December 23, I meet with oncologist doctor, Camilo’s tumor is Medulloblastoma (Stage 3 or 4). Camilo had surgery for his G-Tube and Central Line.
Camilo participated in the Head Start Clinic Trail on January 6th, 2022 at Scottish Rite. Camilo had 6 rounds of chemotherapy; Vincristine, Cisplatin, Etoposide, Mesna, & Methotrexate. During the 1st & 2nd rounds of Chemotherapy, Camilo was taken to PICU for different reasons. During his admission at Scottish Rite had several infections; Gram Positive Rob, Norovirus, Typhlitis, Klebsiella Pneumonia, Staphylococcus Saprophyticus, Pneumocystis Jirovecii Pneumonia, Sinus Infection, Rhinovirus, Adenovirus Infection & Bordetella Parapertussis, Haemophilus Influenza Septicemia. Camilo had multiple EEGs, Ultrasounds, X-Rays, CT Scan, Bladder Scan, Bone Scans, ECHOs, Lumber Punctures and MRIs. Camilo did 5 hour Kidney test called the Glomerular Filtration Rate Test (GFR) for Kidney toxicity and had hearing exams called Pure Tone Audiometry, Tympanogram, Otoacoustic Emissions (OAEs) for Ototoxicity hearing loss, ringing in the ears after each round of chemotherapy.
Camilo’s symptoms/side effects during chemotherapy:
Extreme fatigue (unable to carry on self-care activities)
Low blood counts. White and red blood cells and platelets may temporarily decrease.
Mouth sores (painful redness, swelling or ulcers)
Nausea (interferes with ability to eat and unrelieved with prescribed medication)
Vomiting (vomiting more than 4-5 times in a 24 hour period)
Diarrhea (4-6 episodes in a 24-hour period)
Fever of 100.4° F (38° C) or higher, chills (possible signs of infection)
Blood in the urine
Pain or burning with urination
Bone pain
Severe abdominal pain
Lip Sores
Cheek Sores
Numbness or tingling in your fingers or toes
Taste changes
Hair loss
Nose bleeds
Skin peeling
Electrolytes decreased
Severe skin burns
Skin Rashes
Camilo developed Mucositis with every around of treatment while admitting at Scottish Rite & Egleston. Camilo’s mouth, throat & intestinal track would be covered in sores and inflamed.
Camilo did 3 rounds of Peripheral Blood Progenitor Cell (PBPC) Collection for Stem Cells.
Camilo had multiple Blood Transfusions and Platelet Transfusions. Camilo was placed on oxygen during each admission at Scottish Rite & Egleston.
Camilo finished his 5 rounds of chemotherapy at Scottish Rite in May 30th, 2022 and admitted into Egleston on June 25, 2022 for 3 rounds Chemotherapy and Stem Cell Therapy.
At Egleston Camilo continued his Head Start Clinical Trial with the following chemotherapy; Carboplatin and Thiotepa. Camilo & I hated the Thiotepa Chemo for the following reason; Cami was submerged in the bathtub at 3pm, 9pm, 3am, 9am for 4 days due to the high risk of severe burns, peeling & rashes on the skin. And Cami can't not wear anything with elastic bands, no sticker dressings for his IV Port and no tape for his G Tube. Bedsheets and clothes were changed every 6 hours. Pull ups changed every 2 hours even if using the bathroom urinal.
Camilo can't use soaps, cleansers, creams, lotions or baby wipes. Waking him up at 9pm & 3am were brutal for those 3 months. Camilo had Autologous transplant with his own Stem Cells.
September 26, 2022 Camilo was discharged from Egleston and completed his 3 rounds of chemotherapy and 3 Stem Cell Transplants.
October 13, 2022, Camilo’s Oncologist Team decided, the Proton Radiation Therapy (will give him the highest chances. Camilo will have Proton Radiation Therapy for 5 days a week for 6 weeks at the Emory Proton Center for his Brain & Spine. Radiation started in November after getting his Proton Mask (will keep his head restraint to the table) & the Gantry. Cami will be sedated for each session of Proton Radiation Therapy, treatment will last 30-45 minutes a day. He will be seen once a week by the Radiation Doctor at the Emory Proton Center & his Oncologist at the AFLCA Clinic in Scottish Rite. An MRI & CT Scan will be done before each session for precise delivery of radiation. Cami was placed in Clinical Trials for Learning Development & Memory Disorders (these areas can be affected). And his Thyroid & Pituitary Gland will be monitored, can effect his growth. There are growth hormone shots that be given along with medication after 2 years of Proton Radiation Therapy.
Side effects of Proton Radiation:
Fatigue
Hair loss around the part of your body being treated
Skin redness around the part of your body being treated
Soreness around the part of your body being treated
Damages healthy tissue near the tumors)
Camilo started Proton Radiation on November 14th, 2022. Cami lost his eye lashes, eye brows and the hair that started growing back. Cami's skin on his head & neck is peeling & tearing at the touch. On December 28th, 2022 Camilo completed his Proton Radiation at Emory.
On February 9th, 2023 Camilo’s MRI Scans did show no improvements. Camilo’s thyroid was affected during Proton Radiation. His Oncologist Team decided Camilo will started Etoposide & Cyclophosphamide Chemo Treatments will be given orally at home. Etoposide will be given for 21 days for 6 months, once a day. Cyclophosphamide will be given for 21 days for 6 months. Camilo started his new Chemotherapy’s on March 22nd, 2023. This treatment plan will be followed for 6 months;
Sirolimus - Give once a day on Weeks 1, 2, 3, 4, 5, and 6 Liquid dose (1mg/1mL): 1.5 mg = 1.5 mL
Celecoxib -Liquid dose: fOr (500mg) twice a day on Weeks 1, 2, 3, 4, 5, and 6
Etoposide Liquid dose (10mg/mL): 40 _mg = _ML Give once a day on Weeks 1, 2, & 3
Recommend giving at bedtime on an empty stomach (no food for 1 hour prior to 2 hours after). Recommend giving anti-nausea medication (Zofran or Kytril) prior to each dose.Cyclophosphamide - Give once a day in the morning on Weeks 4, 5, and 6 Liquid dose (10mg/mL): 46 mg = 4.6 mL
Cami had an Bronchoscopy with a BAL on April 22nd, 2023.
Camilo received his Hearing Aides on October 18th, 2023. The Chemotherapy’s caused hearing loss.
Camilo’s kidneys have had slight damage from the chemotherapys.
Tested Positive for the Adenovirus on:
April 8th, 2023
April 18th, 2023
July 17th, 2023
November 20th, 2023
Rescheduled MRI's: October 22nd, November 7th & 20th, 2023 Due to lung concerns, X-Rays were completed, results stated Pneumonia.
On December 26th, 2023 Cami was diagnosed with Bronchiolitis Obliterans. After a CT Scan and blood work. Oxygen will be needed.
On March 8th - September 18th Cami was admitted into the Respiratory floor at Scottish, he was started on methy|PREDNISolone 648mg every 24 hours for 3 days. Along with celecoxib, mirtazapine, montelukast, potassium-sodium-phosphorous, Levalbuterol and budesonide-formoterol. AFLAC came down to give chemo; mesna, cycloPHOSphamide, ondansetron, & sirolimus. On the second day of respiratory treatment Cami was given Immune Globulin Injection IGI (is used to prevent infections or make the infection less severe).
After the 3rd day Cami was discharged with at home treatment plan. Cami will be admitted every month for 3 days for steroid injections for his lungs. Machines used to assist Cami with breathing were the following: room oxygen, The Philips-Respironics CoughAssist T70, High Flow Air-Oxygen Blender and Respirtech InCourage Airway Clearance System with the Comfort Band.
March 16th his Oncology Team suspended treatment due to the aggression of the respiratory treatments.
On August 13th Cami was taken to the ER at Scottish Rite. Cami was rushed for a CT Scan. Cami's Ventriculoperitoneal (VP) Shunt had malfunctioned and Cami was rushed into emergency surgery for a replacement of his VP Shunt.
On August 15 MRI results; there's low bone density in the spine, will be tested for Vitamin D & changes the blood vessels in the brain due to chemo, radiation & high dose steroids. The tumors are stable. CT Scan of lungs; Overall worsened appearance of the lungs secondary to organizing pneumonia, with shifting areas of ground glass densities, pleuroparenchymal thickening, scarring, and bronchiectasis. Air trapping and saccular bronchiectasis at the lung bases have also worsened.
On August 16th Cami had a 2nd bronchoscopy completed by his pulmonologist.
On September 23rd Cami was admitted in to the PICU at Scottish Rite. Cami was placed on High Flower Blender and the Respironics V60 ventilator is a microprocessor-controlled, bilevel positive airway pressure (BiPAP) ventilatory assist system that provides noninvasive positive pressure ventilation (NPPV) and invasive ventilatory support for spontaneously breathing adult and pediatric patients with a Bipap Mask. And given an Arterial Blood Gas (ABG) along with different antibiotics and medications.
September 26th Pulmonology compared all CT Scans. Cami needs a lung transplant.
October 3rd Cami lungs are fluid with liquid.
Oct 15 ECMO was discussed as a form of treatment for Cami. Intubating was bought up as an option.
Oct 16 Tracheostomy was discussed along with a ventilator.
On October 21th the PICU doctor explained placing Cami on the full BiPap mask & the risk of his oxygen dropping dangerously low. Cami was switched to a full BiPap Mask. After a couple of minutes the doctor came back in, made the decision of intubating Cami. Cami was fully sedated, was intubated by the PICU doctor. His nurses were working on him, placing arm restraints, get bloodwork and giving medications. Cami’s oxygen & heart rate start dropping drastically.Cami coded. A Code Blue was called, CPR was started along with medications to restart his heart (happened a couple of times). Cami's oxygen & heart rate started coming back up. Cami had be bagged every 2 minutes while being intubated and on the ventilator for his oxygen to stay above 97. Unable to be moved to the surgical floor, Cami had a Central Venous Line (CVL) & Arterial Line (A-Line) done in his ICU Room. Cami was given a blood transfusion. An ECHO was done, he has Right Atrial Enlargement (RAE) due to working harder to support his lungs. Cami has a blood clots in his lungs. An ultrasound will be done on his legs and arms to see where the clots came from. An X-Ray was done to make sure the CVL was placed correctly. And a new IV was placed. Cami was changed to the VERO Biotech using Nitric Oxide which has kept him above 97. The doctor spoke with the CHOA- Arthur Blank about placing Cami on the Extracorporeal Membrane Oxygenation (ECMO) unfortunately Cami doesn't qualify at the moment. Cami was given the Bair Hugger™ Patient Warming System. He was placed on 2 antibiotics, new medications & his regular medications. A Hotline Blood and Fluid Warmer is designed for use with the Hotline Fluid Warming Sets to warm blood and intravenous (IV) fluids and deliver them to the patient's intravenous access site at normothermic temperatures under gravity flow conditions is being used.
October 22nd Ultrasound results; Cami has 2 blood clots in the upper left arm and has 1 blood clot in the artery between the lung & right side of his heart. PICU, Oncologist and Pulmonologist decided to "Paralyze" Cami to allow his body to rest & recover.
October 24th Cami's left lung collapsed (Pneumothorax). Two Chest Tubes in between his ribs into the space around the lungs to help drain the air and allow the lung to re-expand. Cami was switched over to a High-frequency oscillatory ventilation (HFOV) with the GENOSYL DS is a portable (tankless system that delivers inhaled nitric oxide gas).
From October 24th to November 5th Cami had X-Rays of his lungs twice a day.
On November 1st Cami’s Oxygen Levels dropped to 19% for over 10 minutes. Concerns for brain damage was raised by his PICU, Oncology and Pulmonology Team.
November 5th Cami’s right lunch collapsed. No chest tubes were placed due to the severe of his lung.
November 6th Cami’s heart stopped at 3:30am and 5:00am, he brought rate up on his own. Cami’s became an angel at 7:24am
Cami battled Medulloblastoma (M3, non-WNT/non-SHH subtype with cytogentics consistent with Group 4 and DNA methylation consistent with Group 3) from December 14th, 2021 to November 6th, 2024 and Bronchiolitis Obliterans December 26th, 2023 to November 6th, 2024.
Cami was a spunky, lovable, energetic, silly and extraordinary child who would brighten up every room he walked into. Cami loved playing jokes and scaring family & friends. Cami loved Toy Story, Super Mario, Gru & his minions and Sonic. Cami loved Santa Clause and would dress up. Cami love his siblings, his grandparents and aunts & uncle and especially loved his mama.