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.
Hope session by Lindsay Chan Photography | Facebook | Instagram