About Zioniah's Tribe
My son Zioniah was one month away from turning 9 when we found out he had a tumor in his chest. It all started with an upper respiratory infection that just didn't seem to be getting any better. He was taking cold and flu meds but still had a horrible cough that wouldn't go away. It got so bad that he couldn’t lay flat on his back anymore because he couldn't breathe. I took him to urgent care for an x-ray. They told us it was pneumonia and prescribed antibiotics. The next day another doctor called to let me know they were reviewing my son's x-rays, and they don’t know how they missed the big mass in his chest. They advised me to take him to the ER. He was admitted right away at Miller's Children's hospital. He spent a few days there while they talked about what to do for him and decided they weren't confident to do biopsies on him because of how high risk he was considering where the tumor was located (around his heart and growing into his right lung). He was air lifted to UCLA Ronald Regan. They did the biopsies there and placed a picc line in his right arm. We stayed there for 2 weeks while we waited for the results. Once we had the results, he was sent back to Miller's Children's hospital to begin treatment. Right before his treatments began, he developed a blood clot in his right arm where his picc line was, so the line had to be removed and he had to be on a blood thinner that was given by injection twice a day in his stomach, back of his arms or his legs which caused a lot of bruising.
He had a port placed January 3rd, 2023 and was given chemo through that port the very next day. That day changed my son's condition for the worse. He experienced an extravasation due to negligence from the nurse. He began to show signs of sepsis (heart rate going up in the 200s, his body would shake like he was cold, delusional, weakness, couldn’t sit up or even lift his arm on his own) after a few days went by with nothing being done to help him because they didn't know how to fix their mistake. They said that hasn't happened in 14 years, so they are not experienced in what to do because it never happens. They decided to just focus on pain management by keeping him on a diluted drip 24/7. His chest looked more and more discolored, and he complained of a burning sensation, pressure, and tightness in his chest. After 5 days of that, he had an x-ray and ultrasound done and they found fluid in his chest where the port was, so they took him to surgery to remove the fluid but left the port in his chest when they should've had it removed. The surgeons couldn’t confirm exactly what the fluid was but said it was due to an infection that he got from the extravasation. Zioniah suffered severely and his doctors kept telling me "time is medicine"...as if he would get better with time on its own. The opposite happened. I thought I was going to lose my son and not to cancer.
I transferred him back to UCLA in hopes that they could save him. Zioniah’s port was surgically removed the day after he got back to UCLA. His chemo treatments were put on hold for a couple weeks to focus on treating his infection. During that time, he was on a few different antibiotics IV, fluids, and pain management. He was strong enough to start treatment again after that, but it was all being given through a picc line placed in the other arm. The doctors said it wasn't safe to place another port in his chest, so they kept a close eye on his chest where the incident happened because it still caused him pain and it still looked discolored. They traced the discoloration with a marker to see if it would spread and it did. He had chest x-rays and ultrasounds done to figure out what's going on and they found that his chest filled up with fluid again where his port used to be. He was taken back into surgery to have fluid removed again. After the wound closed, we were told fluid wouldn't build up anymore. Two weeks later he was cleared to go home for a little break because he had been hospitalized for about 2 months. He was only out for a week before he was admitted again on Feb. 7th. He had a CT done to check on the status of his tumor and it went from 9.85cm to 8.37cm. So, the treatments were working. He was getting cytarabine and Cyclophosphamide IV and Mercaptopurine orally. He was getting Lumbar punctures regularly to avoid cancer spreading to his brain. It caused him so many horrible side effects. On top of the chemo, he was also on a lot of other oral meds (fish oil, protonix, Zofran, gabapentin, Cholecalciferol, Bactrim, iron, allopurinol, dexamethasone, NIFEdipime, ect.).
Zioniah was in the hospital weekly for lumbar punctures. He was also going to clinic as an outpatient 4 days a week for chemo treatments and sometimes had to have blood transfusions. In late February he started to lose his hair. At first, I tried to hide it from him but once he saw it for himself, he made jokes about it instead of being sad about it. He was incredibly brave and was naturally goofy.
March 9th he was taken to the ER because of pain in his chest along with redness and a fever. Bloodwork, x-rays, and ultrasounds were done. He was taken to surgery because there was more fluid that built up in his chest where the extravasation happened. He had a whole liter drained from his chest and this time he had an open drain placed to prevent fluid buildup and to close the pocket on his chest. Two days later he was cleared to go home, and I had to change his bandage daily at home.
He was back to going to clinic as an outpatient for chemo treatments and lumbar punctures. He was admitted again March 31st for treatment to be monitored. He had his drain removed and more x-rays and bloodwork done and some physical therapy because he still couldn’t walk on his own. He went home 2 weeks later. I was packing his wounds at home because the drain was removed but he still had 2 holes in his chest where the drain was, and fluid was still leaking out of those holes until they closed completely.
On April 18th he was admitted again to start a new chemo. He was given Methotrexate IV over 24hours. The initial dose he was given was too much for him and caused nose bleeds, excessive mucositis in his mouth, throat, and GI track. He was pooping blood, vomiting blood, and developed multiple blood clots in his nasal passages that left him plugged up for days. His entire immune system was wiped out and he caught a couple infections which kept him in the hospital longer than planned. His chemo was supposed to clear within 3 to four days but because the amount he was given was so high, it took 7 days to clear out of his system and it took another week to clear up the infections he caught in the hospital. He was supposed to start his 2nd treatment of the 24-hour Methotrexate 2 weeks after the first one. Doctors gave him a lower dose this time around and it took him 4 days to clear it out of his system. He got to go home finally on May 5th.
He was back to going to clinic as an outpatient May 12th for chemo treatments four days out of the week. On May 19th he was admitted again to get the Peg (chemo) IV. He had an allergic reaction to it and couldn't breathe so he was sent to the PICU. Because he had an allergic reaction to the Peg, he had to be on an alternative chemo to replace that one. That meant he had to go in for IM injections 2 times a week for 3 weeks, which went on for a couple months.
Towards the end of July, Zioniah would complain of chest pain and developed a cough. He had an appointment in clinic for chemo, but his urine wasn't clearing this time for him to get chemo. He was sent to x-ray to see if maybe the tumor was growing due to his complaints of pain and coughing and his urine not clearing. Sure enough...he had relapsed and the tumor was growing again. He was admitted August 8th. His tumor was 14cm wide, bigger than it was when he was diagnosed. He had trouble breathing and more fluid was building up but this time it wasn't in his chest wall. It was in the sac that held his heart and it was in his right lung. It was causing him a lot of discomfort and breathing complications. He had a drain placed in his right lung and in the sac around his heart. More than a liter of fluid was taken out. The drain was removed a couple days after it was placed. He stayed in PICU for a few days after surgery. His breathing complications got worse quickly and he was in a lot of pain and then...September 12th he couldn't sleep the whole day or night because he could hardly breathe. The next day he was rushed to surgery for drains to be placed again because there was a lot of fluid building up again in his lung and around his heart. I was told that the chances of my son making it through the surgery were slim but if they didn't get him to surgery right away, he would die. I wasn't there at the time because I had 2 babies at home. I begged the anesthesiologist to please wait for me to get there but there was no time. I broke down and video called my son to tell him not to be scared and that it would be ok and that I loved him sooooo much!!! I made it to the hospital right before he got out of a 2-and-a-half-hour surgery. I was then told that he flat lined as soon as they put him under, but they did chest compressions for 10 minutes straight and they got him back, but he had to be on a ventilator because of the damage done to his ribs and lungs from all the chest compressions, he couldn't breathe on his own. Seeing him with tubes in his mouth and nose and wires everywhere was heartbreaking! He woke up gasping for air feeling like he couldn't breathe multiple times and it was painful to watch. He was on a Fentynal drip 24/7 to help keep him asleep. He was on the ventilator for 6 days before he passed away on September 19th, 2023. 💔💔💔
Gifts made in Zioniah’s memory allow researchers at the Children’s Cancer Therapy Development Institute to continue developing safe and effective, life-saving treatment options in hopes that one day all childhood cancers are universally survivable.
