“Imagine hearing the words, ‘Your child has cancer.’ As you’ve just been abruptly woken up at 5 a.m. in a hospital room by your son’s doctors. We only came for a broken leg. How can that be? As the doctors kept speaking, their words sounded blurry. I was hoping I was just having a nightmare but unfortunately, it was reality. My extremely happy, healthy almost 2-year-old baby boy has cancer.
Just a couple weeks prior to this day, Zy had started limping and having random unexplained fevers. We took him to his pediatrician and they ordered some labs as well as gave us a referral to a pediatric orthopedic doctor for the limping. When his labs returned, it showed he was anemic and they suggested some diet alternatives to help with that.
Soon after, we made an appointment with the orthopedic doctor, and he ordered some x-rays of Zy’s pelvis. He said he saw ‘modeling’ of the femoral bone, and he was concerned Zy may have an infection in his hip. He immediately admitted us to the nearest hospital for further testing.
I asked him, ‘Could this possibly be anything worse?’ He said he was afraid Zy could have Osteomyelitis which is an infection in the bone. Zy had ultrasounds and MRI’s done. We were given the news that his left femur was broken. We could not believe he was running around with a broken femur. The femur of all bones is supposed to be the strongest bone in the body. How did it break? He was very active but had no recent injuries, falls, or anything else we could think of. I asked the orthopedic again, ‘Could this be anything worse?’
He said, ‘Hopefully it’s just a fracture that can be healed with a cast.’ They decided on doing further imaging on Zy to include x-rays of his entire body and a CT scan of the abdomen and pelvis. All the while my mind was racing and wandering to horrible places, and I started googling ‘reasons a bone can break with no injuries.’ The results did not calm me or ease my mind.
The very next morning, both Zy’s pediatrician and orthopedic doctor came into the room at 5 a.m. to give me the news. ‘Your child has cancer.’ I was in disbelief. They explained the CT scan revealed a tumor on his left adrenal gland that had metastasized and caused his leg to break. I thought, ‘Metastasized? Doesn’t that mean…’ Yes, yes it does. It had already spread. I started asking the questions that seemed logical to me at the moment: How did this happen? What stage was it? Was he going to be okay? All questions they could not give me answers to.
They stated he needed to be transferred to the children’s hospital oncology unit for further evaluation and testing. Zy was put into a spica cast, which went around his abdomen and hips, and down his entire left leg. Before leaving, the orthopedic doctor came to me and said, ‘You kept asking me if it could be anything worse. Did you know?’ And I immediately burst into tears. ‘Yes, I did.’
Motherly instinct is so real. I didn’t want to believe it, but somehow I knew I would be receiving the worst news possible. I was all alone in the room with Zy, not by choice but because we were smack dab in the middle of a pandemic and they only allowed one parent in the room at a time. So I had to be the one to make the phone call to Zy’s dad. The hardest phone call I’ve ever had to make, and for him, the hardest he’d ever have to take.
He rushed to the hospital and they made an exception for him to be there with us, given the circumstances. We spent the entire day in tears, looking at our sweet boy thinking, ‘This can’t be real. How can this be?’ We also had to make difficult phone calls to our families.
The next day we were transferred to the children’s hospital by ambulance. We were put into a room and waited hours and hours before a doctor came to see Zy. They explained what type of cancer they assumed it was, but that only a biopsy could confirm. They scheduled that as well as a bone marrow biopsy to test his marrow for cancer. We waited five long days for those results. Zy spent his second birthday admitted on the oncology floor, awaiting his official diagnosis.
It turned out to be exactly what they had assumed, Stage 4 Neuroblastoma.
Zy was listed in the high-risk category due to having a genetic amplification that causes the cancer cells to grow more rapidly. He had other testing done: MRI of the brain, PET scan, and MIBG scans (which is a special scan that picks up neuroblastoma cells in the body). It was determined he had five tumors total; two on his adrenal gland, one on his right chest wall, and one tumor behind each eye. He had cancer in the skeletal parts of his skull, orbital bones, jaw, humerus’, chest, spine, pelvis, femurs, tibias, and fibulas.
This scan determined he had a curie score of 17. A curie score is what they use as a prognostic indicator. It’s a number that can range anywhere from 1-30. Since his was 17, it was considered to be high, and ultimately gave Zy a poor prognosis.
I had never heard of this type of cancer, so naturally I did some research and was not happy with what I was reading. I had never been more scared in my entire life. The oncologist went over what his treatment plan would look like.
Chemotherapy, surgery, two stem cell transplants (aka bone marrow transplant), radiation, and immunotherapy. She explained there was a trial being conducted by the Children’s Oncology Group for this cancer, and if we signed up they could do more research on Zy’s tumor and he may end up being selected to complete an extra radiation treatment called MIBG therapy. We agreed to sign him into the trial as it couldn’t hurt and would end up helping kids in the future with the same cancer.
Zy started his first chemotherapy shortly after. He experienced all of the normal side effects from chemo that include nausea, vomiting, fatigue. He endured all of this with a smile on his face. His strength gave us strength. We were amazed at how strong and brave he was. He continued on with cycle 2 and 3 of chemo, experiencing fevers in between, which means an automatic admission to the hospital for antibiotics. We also made a trip to a hospital 600 miles away from home for stem cell collection. Little did we know, this would be the first of MANY trips to Cook Children’s hospital.
We learned our home hospital, El Paso Children’s, does not offer many of the treatments Zy would need. He even had to be med-flighted once for an unexpected surgery for a fistula that derived from receiving chemotherapy. Definitely not the first plane ride anyone would want for their child!
After cycle 3 of chemotherapy, Zy was randomly selected to complete the MIBG radiation therapy that was offered in the trial he was enrolled in. He was the first patient from our city to be selected. We traveled to Fort Worth again, and got admitted for the therapy. For this therapy, Zy was injected with a high dose radioactive iodine. He was subjected to a crib, in a room that was lined in plastic for 6 days. He was by himself in this room, and we could only enter the room to change his diaper or to take his food to him. The nurses/doctors and parents could only enter the room with protective equipment from head to toe, and for small increments only. They measured our radiation exposure each time with a dosimeter and we could not exceed a certain number.
Zy’s father and I were in the next room and were able to talk to Zy using an intercom system. We could also see him through a lead window. We thought Zy would have a hard time with this since he is only 2 years old and extremely attached to us, but to our surprise he did so well. He was so brave.
He went on to do cycle 4 of chemotherapy, and next was his surgery. They removed the two tumors on his adrenal gland as well as the adrenal gland itself. If your child has ever had a surgery, you understand how grueling those hours in the waiting room are. Zy’s surgery was a complete success. The surgeon was able to remove 100% of the tumor. We were able to go home just 48 hours after his major abdominal surgery!
Up next was cycle 5 of chemo. Zy got sicker than usual after this round and had to spend more time in the hospital than anticipated. Up next was the scariest part of his treatment thus far… bone marrow transplant.
We traveled to Fort Worth yet again and Zy received high dose chemo, followed by the transplant. Zy received his own cells that they had collected earlier in the year. We had to spend Christmas in the hospital, away from our family. Luckily our hospital allowed siblings to visit on Christmas day, so we brought Zy’s older brother and sister to see Zy! They had never seen Zy in the hospital because of the pandemic, so it was nice for them to be together for a day.
Before we were to be released from the hospital, Zy began displaying some strange symptoms suddenly. He was vomiting 500 mls, four to five times daily and had not had a bowel movement in weeks. Thankfully, the doctor decided to have some imaging done to include upper GI studies, which is multiple x-rays of the abdomen after swallowing contrast, as well as a CT scan. The studies showed Zy had a bowel obstruction which required surgical intervention. Zy had yet another unexpected surgery to correct this. Thankfully, it was done non-invasive and Zy recovered fairly quickly and we were able to go home about 10 days later.
The weeks in between his first and second transplant were well spent at home with family, opening many Christmas gifts that were awaiting him! Before we knew it, it was time to travel back to Fort Worth for his second bone marrow transplant. We were admitted for this transplant on February 15th. Zy received the high dose chemotherapy for six days followed by the transplant on February 23rd.
We didn’t know it at the time, but this would be the most difficult part of treatment thus far. Zy has experienced many side effects from the transplant, some which were expected and some severe complications that not all cases experience. He started having respiratory issues, abnormal vital signs, and had to be placed on oxygen. He had to be moved to the ICU on two separate occasions so far.
He was diagnosed with TMA (Thrombotic Microangiopathy) which is an extremely serious syndrome that can be fatal. He also was diagnosed with pulmonary hypertension and compensated heart failure.
It is now April and he is still admitted in the hospital, with no real end in sight. It’s extremely difficult being so far away from home for so long. It is extremely heartbreaking watching your child go through so much. He’s just 2 years old and too young to understand what he’s going through. For him, this is the only life he knows.
I long for the day we can take him out and show him the world, the park, the movies, the beach, Disney World. That stuff just seems so out of reach at the moment. We are so lucky to have so much support from family and friends, we are so blessed to have so many people in our corner who genuinely care about our Zy. Every little thing they do has made such a big impact on us. Just checking in weekly to ask about Zy, or letting us know they’re thinking of him makes our day.
Some of our friends and family have gone so much out of their way to show us support, from sending gifts to Zy, to hosting their own fundraisers and benefits. We are extremely grateful for everything everyone does for Zy!”
This story was submitted to Love What Matters by Priscilla Jennings of Fort Worth, TX. You can follow Zy’s journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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