Team Levi Tsu

In March 2020, the world shut down because of COVID. But for our little family of 3, we received heartbreaking news that would forever change the trajectory of our lives. At 9 months old, through a work up swallow study that was meant to help us figure out some feeding issues, we unexpectedly discovered on a brain MRI that our sweet baby boy had a 5cm tumor growing in his brain. It was pushing against his cerebellum and brain stem and the reason why he was aspirating on all liquids, and now needed a NG tube for all hydration and nutrition, he could no longer safely swallow. The tumor was also causing his brain to fill up with fluid leading to a fatal condition called hydrocephalus, it explained why he was so lethargic, barely conscious, and had developed gross motor delays and balance/coordination issues.

Levi was diagnosed with ATRT - atypical teratoid rhabdoid tumor. We soon found out that it is a rare and aggressive brain cancer that afflicts young babies and the prognosis was not good. At the time we refrained from looking into the numbers but we now know Levi only had a 10% chance of survival. Even with this horrific news, we forged on ahead and focused on Levi’s survival. After a 6 hour brain surgery to remove as much of the tumor as possible, Levi immediately began chemotherapy. The plan was to do 52 weeks of high dose chemotherapy. Unfortunately, Levi relapsed in Dec 2020. We pivoted and switched protocols. At 22 months old, Levi underwent an autologous stem cell transplant in April of 2021. Unfortunately, more bad news followed, we soon discovered he had cancer cells in his cerebrospinal fluid (CSF). At this point, our Chicago team gave us the devastating news that they did not believe Levi would survive his cancer. They felt it was time to involve hospice and refrain from any more intensive treatments. We were absolutely gutted. He looked so good and was doing so well. We refused to believe it.

We immediately reached out to Dr. Chi, an ATRT expert at Boston Children’s Hospital, who provided us with a different perspective. She suggested starting Levi on the MEMMAT protocol and beginning weekly intrathecal chemo to clear the CSF. Levi’s CSF cleared within a week and remained free of cancer cells.

We immediately moved to beginning focal radiation in October 2021, Levi was now 2.5 years old at this point. The next year, Levi was kept on low levels of oral chemo and continued to thrive. He learned how to walk and was able to enter into preschool and as a family we found out the wonderful news that we were expecting another boy. However, during this year intermittent CSF checks here and there would give us some puzzling results showing atypical cells. His team didn’t know what to make of it and for now there was nothing that needed to be done.

Fast forward to August 2022, Levi was now 3 years old and in three months time would become a big brother! Sadly, one of Levi’s routine CSF checks came back showing ATRT cells. We were absolutely shocked and in disbelief. The walls were closing in on us with each repeat CSF draw week after week showing that ATRT cells were multiplying. We needed to do something fast. We made the difficult decision for Levi to undergo craniospinal irradiation (CSI). Levi’s entire brain and spine would receive radiation in hopes of controlling the ATRT cells that were now in his spinal fluid. We were told that this was a palliative measure and that Levi would suffer neurologically devastating consequences from the radiation. But what other choice did we have? With heavy hearts we made a difficult decision for Levi to do more radiation.

Thankfully since then, Levi’s ATRT has been in remission. In April 2023, Levi started to get sick pretty often, fevers and viruses. We didn’t think too much of it since he was enrolled in preschool and we figured it was just school germs. However routine blood draws showed Levi’s platelets were consistently low. In May 2023 Levi underwent a bone marrow biopsy to rule out anything worrisome. Our world was turned upside down once again when we learned Levi had leukemia cells in his bone marrow. He was diagnosed with treatment related acute myeloid leukemia (AML). Due to all the toxic treatments he’s received since he was a young baby, he had developed a secondary cancer. We were told this is a very aggressive form of leukemia that is hard to treat.

Thankfully because of our relationship with Dr. Chi, we were able to fast track and facilitate a transfer to Boston Children’s Hospital to treat Levi’s leukemia. Since June 2023 we relocated to Boston temporarily so that Levi could receive the best care possible and undergo a bone marrow transplant. Following Levi’s bone marrow transplant we will also enroll him in a clinical trial which is aimed to completely cure him of his leukemia since there is such a high chance of relapse. The trial is over the course of 6 months and will require us to travel back and forth from Chicago to Boston.

As Levi’s parents we are constantly worried about his health and future. We have fought long and hard these four years. And in spite of setbacks and recurrences, Levi has defied expectations. We are amazed that Levi is now a 4.5 year old! We wish we had answers for why Levi has had to undergo so much suffering, he’s lived most of his life in the hospital receiving treatments. But we do know that in these 4 years we have experienced the kindness and generosity of so many friends, family and even strangers. And while there have been so many scary moments of trauma in our story, there are also so many moments where we know without a doubt that God has carried us through the deepest of valleys and is sustaining us even now. God has shown us time and time again that Levi’s life isn’t defined by doctors, modern science or even his diagnoses. While we have seen and experienced horrors no parents should have to, we have also experienced a fuller joy and a deeper appreciation seeing Levi grow and develop into a smart, funny, and loving kid.

Thank you for your support and kindness towards our family. There are no adequate words to fully express our gratitude. It’s enabled us to be fully present for Levi and allowed us to become a one income family while easing the heavy financial burden. There have been many costs associated with his treatments and care. This includes things like medical bills, medical costs not covered by insurance, travel (both local and out of state), and lodging in Boston and meals during his treatment. Shannon has not been able to work these past 4 years because Levi requires a full time caregiver and Sam will need to take additional unpaid time off from work to help care for Levi and attend medical appointments. Caring for a medically complex kid with special needs like Levi from his hearing loss to having a gtube and his developmental delays also has extra costs whether that be special equipment or even clothing and long term therapeutic services like speech and physical therapy. Any support big and small means so much to us.

Venmo donations @Sam-Tsu are preferred. 

We are thankful for you,

The Tsu Family