Leo the Lion
by Nicole Sasse
Watch the trailer from former PTHA secretary Nicole Sasse on her experience with childhood cancer and read about her brave fight to raise awareness and fight for more funding for cancer research dedicated to childhood cancers and the effects of treatment… there will be more to come as we follow her story.
January 11, 2020 my then 2 year old son was diagnosed with stage 5 Nephroblastoma, aka Wilms Tumor. The day before, I was getting ready to leave for work and needed to change his diaper. As soon as I opened it, I saw it was soaked in dark red blood, with blood clots the size of a quarter. I picked up the phone to call Ryan to come home from work, something was wrong with Leo. My mom came over right away to watch our 11 month old daughter Scarlett. Ryan and I had rushed him down to Children’s Hospital of Philadelphia. We spent the next 5 hours in the Emergency Department while Leo had repeated urine tests, blood work, then finally an ultrasound. Shortly after, in came a Doctor with his results…
“Your child has masses in each of his kidneys. We believe these are Wilms Tumor, but we cannot confirm until he has an MRI and unfortunately it will have to wait until tomorrow as our machines are booked for the day, I’m so sorry. We are going to admit Leo upstairs now in our oncology unit. Please grab your belongings and a nurse will escort you upstairs.”
At that moment, everything froze. People were moving around us and talking, but I couldn’t hear anything…I couldn’t even breathe. I couldn’t really cry either. I think I was in a state of shock and disbelief and my baby was watching my every move. All I could think is, he can’t be sick, they’ve made a mistake. From October to December I had taken him to the doctors countless times for constipation and no appetite. Each time I was told, “This is typical toddler behavior, it’ll pass.” But there we were, completely blind sided sitting in a hospital room trying to figure out how we didn’t know. The next day after his MRI confirmed it was Wilms Tumor, the oncology team sat us down in a private conference room to explain what was happening to our son. My parents were there also so Leo could have familiar faces while we had the meeting. In that room, is where we learned his cancer was not only in both sides of his kidneys, it had metastasized to his lymph nodes and both lungs. We will never forget the absolute pain we felt hearing the words your child has cancer. There they gave us his treatment plan which consisted of 3 chemotherapy drugs over an approximate 25 week timespan. One by one, they went over all the horrid side effects. But, in order to save his life we had no choice but to sign our consent to pump these toxins into his little body. When we returned to his room, I realized I forgot to ask what stage he was in. A doctor came in and said “Leo is Stage 5, I’m very sorry.” Then she walked out. I felt like I was punched in the stomach, the wind knocked out from me. I turned to my parents crying, “What’s stage 5? I thought there are only 4 stages, he’s already at 5? Does this mean he’s dying? Is he already dying? Please just tell me the truth, is my baby going to die here? He’s only 2 years old, how can this even be happening!”
Things move quickly with pediatric cancer, they need to start treatment right away because the majority of the time, the cancer is found after it has already spread. They placed a port into his chest, and started his first round of chemotherapy. The nurse warned us that if he cries, it will look like his eyes are bleeding, don’t be alarmed, it’s just the chemo running through him. We spent the rest of the week inpatient until he was finally discharged. We shaved his head the following week because his crazy mop of beautiful blonde curls were already falling out into clumps everywhere. That’s when it became more of a reality, seeing how the drugs were killing even the good cells in his body. Every Monday we were in the cancer clinic for chemo. Each time, Leo became weaker. Our high spirited daredevil was instead bed ridden. It was just the beginning and he already needed several blood transfusions.
By the time of his second set of scans, the left tumor still hadn’t decreased in size. The Team decided it was time to take it out and do a biopsy to see what he was really up against. After roughly 7 hours Leo was finally out of surgery and waiting for us in the PICU. His surgeon believed he was able to remove all of the cancer, saving about 50% of his left kidney. The first night in recovery Leo did great, so the next day we were moved to the oncology unit. That’s when things took a turn for the worse. His blood pressure & oxygen levels kept dropping dangerously low. The nurses had to put him on oxygen through small tubes inserted up his nose. He was wide awake while 4 nurses, Ryan & myself included, had to hold him down as he screamed and cried for us to stop. He was so scared and sad that we weren’t saving him from all the torture. He was traumatized, he eventually stopped talking. While his fever lasted for days he was given Tylenol and Percocet for the pain.The drugs gave him so many nightmares, causing his body to thrash around as he begged for Mommy & Daddy to help him. It was excruciating not being able to pick him up and just hold him, having to lie.. telling him everything will be okay. He wasn’t able to pass any bowel movements either so he was restricted from eating or else he would develop a bowel obstruction and need another surgery. Finally 5 days later, they decided to lift the restrictions and allow him to have food. After a week of being hospitalized, we were sent home. The same day we came home we received the results from his tumor’s pathology. Leo’s cancer was predominately blastemal, meaning that the cancer type was very aggressive and chemo resistant.There was no time to waste, we had to bring him back and get him started on a more aggressive regimen. This time, they would add in two stronger drugs that would need to be administered over 5 days in the hospital for each cycle. Along with the high dose drugs, he would need to have a heart protectant and a bladder protectant medication because the toxicity of the chemo causes damage to his heart and makes the bladder bleed. Six weeks later, Leo had his second partial nephrectomy with only a week of recovery before he needed to start his radiation. We thought we were past the hardest part of his journey, but we were wrong. The combination of the chemo and radiation ravaged his body. He was hospitalized for an entire month due to unexplained fevers, neutropenia (zero ability to fight off any illness), constant diarrhea, and vomiting so hard blood was coming up .He stopped eating and drinking for 19 days straight and was placed on IVs of TPN (Total Parenteral Nutrition) to get him through. Within a few days he had already lost 4lbs.He couldn’t tolerate a nose feeding tube because he was throwing up too much nor, able to receive a stomach tube as he had no blood platelets and would bleed out. The Team ran an X-Ray on his chest, an Echocardiogram, CT & MRI scans where they found a 4.4cm area above his left kidney that was likely collecting blood, or bacteria. They needed to have it biopsied, but they couldn’t safely do it without doubling his blood and platelet transfusions.The results came back “Sterile” there were no signs of any bacterial infection. The Infectious Disease Department also had to evaluate Leo. They couldn’t find any reason either as to why he was so ill. It was clear to Ryan and myself that his body had had enough. I laid awake every night in bed next to my baby, watching him sleep and listening to the sound of his machines going off throughout the night. I couldn’t help but think, is this it for him.. Is he not coming home this time? Has his frail little body had enough of these poisonous drugs?
Weeks went by, and his fever finally broke. He still wasn’t able to eat on his own and needed an NG tube. It was awful, we had to hold him down as a nurse shoved a tube inside his nostril down to his stomach. We were finally discharged after having a lesson on how to replace his NG tube if it comes out, and how to safely check that it was down into his stomach and not into his lungs causing him to aspirate. His feedings at home never went well, he almost alway vomited, having the tube come back out. He would actually try to hold in his vomit, so the tube wouldn’t come out of his mouth. Each time, we had to replace it back into him as he pleaded for us not to. Not long after, we celebrated his 3rd birthday in clinic while he was receiving chemotherapy that day. What should have been a fun and joyous day for Leo, was nothing but pain and sickness.
As we came closer and closer to the end of treatment, we finally started to see the light at the end of the tunnel. He completed his last round of chemotherapy October 2nd, 2020. Of course, nothing was ever easy or routine for him and he ended up needing a few more days hospitalized because his bladder was bleeding from the drugs. But at last, he finished treatment after 10 grueling months. Today Leo is 9 months in remission. He has trouble walking because he had developed neuropathy in his ankles from the treatments he received. He’s currently undergoing physical therapy in hope that it can be reversed. Every 3 months we meet with his Urologist, Nephrologist and Oncologist. He is also scanned every 3 months to be sure his cancer doesn’t return. We were told that he will eventually need medications such as blood pressure medicine and prepare for him to need dialysis before he’s 30 years old. As long as his cancer doesn’t return he will be eligible for a transplant when needed.
These are just some of the gruesome things kids go through battling this deadly disease. It’s never over for them. More than two-thirds of childhood cancer survivors face at least one of the following severe or life-threatening side effects from the treatments they received: Secondary Cancers. Heart Damage, Lung Damage, Infertility, Chronic Hepatitis, Alterations in growth and development, Impaired cognitive abilities, psycho-social impact. These are a direct result of the surgeries, chemotherapy, radiation given while their young bodies and minds are still developing. The drugs they are given were never meant for children, only adults. Most of them are over 60 years old. The National Cancer Institute spends less than 4% of its annual budget on pediatric cancer research. It’s time people see childhood cancer for what it really is, how their life is cut short before it even gets started. Our kids are worth more than 4%. You may not think this situation could ever be you, but neither did I until a year ago.