On March 24th, we took our sweet boy, Levi into Lurie’s Children’s Hospital for an outpatient swallow study thinking we would be back that evening. However, we quickly found out that Levi was silently aspirating on all liquids and that he would no longer be able to breastfeed. All his feeds now needed to go through an NG tube immediately. Levi was admitted so that we could learn how to use the NG tube. However, we still felt something wasn’t right and something more needed to be done to find the source for his aspiration. Levi had been experiencing developmental delays over the past few months and, now with his liquid aspiration, we knew something was wrong. An emergent MRI was ordered and then our lives changed forever. The MRI showed a tumor pressing up against Levi’s cerebellum.
The three months after his diagnosis was one of the most difficult periods of time we had to go through. Levi endured two brain surgeries, anaphylaxis, multiple ICU stays, and getting put on a ventilator at one point. Due to his feeding issues, he required an NG tube and now he has a g-tube where he receives his daily feeds. However, Levi was and continues to be such a strong warrior.
Due to the aggressive nature of Atypical Teratoid Rhabdoid Tumor (AT/RT), Levi is undergoing high dose chemotherapy for 52 weeks and will most likely get radiation therapy afterward. He is currently in week 16 of his protocol. His chemotherapy regiment has been described as “kitchen sink” chemo since a very wide variety of drugs are used. Typically, his cycle involves the first week when the chemotherapy is administered and 1-2 weeks afterward to allow Levi to recover before another cycle begins again. Typically, the recovery weeks are filled with blood or platelet transfusions which Levi has to be pre-medicated for to prevent his anaphylaxis to blood products. We are amazed by Levi’s resilience. He is truly a fighter.
Cancer has irrevocably changed our lives. It has in many ways completely altered our identities and our understanding that in life, nothing is certain. There are many days where we are filled with fear, anxiety, and despair. However, we continue pushing through and fighting because we are the best advocates for Levi. Even in the face of such a difficult diagnosis, we don’t give up hope. With his diagnosis, we are learning to live everyday moment by moment.
Levi is a resilient fighter. We are privileged to be his parents. We are continuously amazed at what he has gone through, all that he will go through, and how despite it all he is still laughing, joyful, and curious as ever. His story has touched the hearts and lives of many. We know he will do great things in his life and can’t wait to be a part of it.
Jonathan is a happy, charismatic, silly, and energetic 5-year-old boy. He loves the Incredible Hulk, all things music (singing, piano, and guitar), coloring, drawing, Godzilla, and Batman.
In November of 2019, Jonathan started complaining of headaches, neck pain, and occasionally vomiting. Shortly after, he was diagnosed with the flu, so his complaints were warranted as symptoms of the flu. With little improvement, a CT scan on his second ER visit on January 13, 2020, revealed an excessive build-up of cerebral spinal fluid – hydrocephalus.
On January 14, 2020, an MRI revealed a brain tumor. Our family was in shock and soon after we sought expert care out of the state of Florida and journeyed to Children’s Hospital of Philadelphia (CHOP).
Since the journey began, Jonathan has endured 2 major brain surgeries to alleviate the fluid pressure. In March of 2020, Jonathan’s tumor was resected, and pathology confirmed Jonathan’s brain tumor was malignant and metastatic, (ATRT). Currently, he has undergone (5) rounds of Chemotherapy, (3) Stem Cell Transplants and in October he will undergo 6 weeks of Proton Radiation.
Our family life has certainly changed. We relocated to Philadelphia and are currently living in the Philadelphia Ronald McDonald House. We’ve been here since February of 2020. I had to resign from my position at work and my husband is not working. We are here with our 7-year-old daughter and my parents.
My sweet Mariah was diagnosed with a rare and very aggressive type of cancer on May 17th. We also found out she has a half a centimeter tumor deep in the middle of her brain.
Henry’s personality is the best one I know. He is funny, loving, determined, and outgoing. What makes him laugh is joking around, but be careful he jokes right back. He has the greatest laugh of all too!
He was diagnosed with AT/RT on June 13, 2018 after persistent vomiting as well as some changes in his gait. Since being diagnosed with a brain tumor he has been put through surgery, which he had some side effects from the removal of the tumor. Such as balance or gross motor skills, because of the location. He does see double now as well as a result of the surgery, his right eye is directed inward.
Our family did struggle with adjusting to this new way of life. But we got help with medication for our anxiety/depression, got a hold of our emotions and pushed through the hardest days. I did have to temporarily leave my job to stay with him in the hospital while my husband worked, so that was definitely a strain not being able to go home at night. Now that he has been taking oral chemo we can do that in the comfort of our home.
Henry is a champion and has amazed both his Dad and I with all that he has been through and still has a smile on his face. Very seldom did he have a bad day in the hospital or at all for that matter. He is the brightest light in the middle of the dark.
When Kenrick was 8 months old he started tilting his head to the left and while it didn’t hurt him to move it that is the side he preferred. His father and I took him to the ER thinking he may have a ear infection. Once his ear was swabbed and there seemed to be nothing wrong, the doctor offered us a CT scan. We hesitantly agreed and when the results came back they found the tumor (AT-RT) intertwined in his central nervous system.
Kenrick handles treatment like a champ. Throughout all his chemo treatments he has never once shown any signs of fatigue or nausea even his oncologist is intrigued by how well he does.
Our family has had to overcome many obstacles the past year especially with my husband being in the military throughout his treatment. The family and friends we have made at St.Jude has truly been a blessing and they have helped us with the obstacles we have faced.
I would like to say Kenrick’s diagnosis hasn’t affected our family at all but that would be dishonest. I would say his diagnosis has affected our faith, while there were times we felt scared our faith was strengthened by this journey.
Kenrick is now 17 months old he continues to undergo maintenance chemotherapy but overall is showing no signs of the cancer returning and we pray that the cancer stays gone forever.
