Team Levi Tsu

Our loving, precious, and silly little boy, Levi, was found to have a brain tumor just after 9 months of life near the end of March 2020. At 6 months, we started noticing some gross motor delays. However, he was still a healthy boy - loving life and gaining weight. The pediatrician thought that maybe he was just a little bit behind his peers and maybe all he needed was some extra attention and physical therapy.

However, as the months rolled by, he was still not progressing. After his 8 months, we saw a Neurologist who was cautiously optimistic and recommended starting off with some physical therapy. Then his feeds started getting worse - coughing and choking every single time. We took him to do a swallow study, and he was found to be aspirating on every consistency of liquid. We were immediately checked into Lurie’s Children Hospital in Chicago so that a NG feeding tube could be placed through his nose for him to safely eat. It was hard to see Levi struggle and still not know the “why” behind what was happening.

Sharing this new piece of information with the medical team, they recommended getting a MRI to get a better picture of why we might be experiencing his motor delays and feeding issues. When we got the MRI results, it felt like our world fell apart. They discovered a 5 cm mass growing at the base of his brain. It was pushing against his brain stem and causing pressure to build up in his head. Our hearts dropped, but we finally saw the puzzle pieces start to come together.

They performed brain surgery the next day and removed as much of the mass as possible without damaging his still growing brain. A few days later, the pathology report showed that Levi has a rare, aggressive pediatric brain cancer called Atypical Teratoid Rhabdoid Tumor (AT/RT). Levi immediately started a 52 week long chemotherapy protocol with plans for focal radiation afterward. Levi has been such a little fighter. The first half of his chemotherapy treatment was took a huge toll on his little body with a 3 month hospital stays for fevers, infection, and also spending time in the ICU. 

After completing 30 weeks of high dose chemotherapy, we were heading into the “easier” part of his protocol when a routine MRI showed reoccurrence in the original tumor bed - the cancer was back. We were devastated, especially after all that he had gone through.

Levi went through an even more intensive treatment protocol with the hope that the new combination of drugs would control tumor spread until he was closer to 2 years old and can begin radiation. The new treatment protocol meant more rounds of high dose chemo, ending in a month-long hospital stay where he received lethal doses of chemo drugs in the hopes of killing all the cancer cells circulating in his body and then giving him back his own stem cells in order to “rescue” him.

After his stem cell transplant, the tumor reoccurrence shrunk almost entirely on the post-treatment MRI. We were overjoyed and looking forward to starting focal radiation. However, a few days afterward, we were devastated when a routine sample of his cranio-spinal fluid tested positive for malignant cells. This came as a shock for everyone including his doctors. The two high dose treatment protocols Levi endured for over a year were ineffective in treating the cancer.

The doctor told us that Levi’s cancer is no longer curable. From their perspective, all other treatment options would only extend Levi’s life before the cancer would overtake his body. We now need to think about how we could make Levi’s life as comfortable as possible for however long we still have him.

We are still undergoing some treatments with the hopes that this will slow the cancer. As the doctor said, we are in unproven and uncharted waters. In our minds, Levi life is in God’s hands.

Levi’s journey isn’t solely defined by the grief-filled day we found out he had a brain tumor. It began with joy when Shanshan and I first discovered that God was going to bless us with little Levi. It’s filled with moments of his laughter and sweetness. Nor does his journey end with his diagnosis. We are thankful to have you as part of Levi’s team as we journey through this together.

Unfortunately, there will be many costs associated with his treatments and care. This includes things like medical bills, medical costs not covered by insurance, travel (both local and possibly out of state), and meals during his treatment. Shanshan is no longer able to work because Levi needs full time care and Sam will need to take additional unpaid time off from work to be with Levi. There are also many costs associated with the side effects of his treatment like hearing aids and things like special clothes to accommodate for his central line and g-tube. Any support big and small - whether through finances, words, prayer, or food - means so much to us. Your support allows Shanshan and Sam to focus on being with Levi.

 
You can also give via Venmo (@Sam-Tsu) or, if you prefer to mail a check, please contact Will for a mailing address.

We are thankful for you,
Sam and Shanshan