Emily is a beautiful, spunky, happy 18-month-old little girl who has been fighting illness since August. Over four months, she visited multiple doctors, specialists, and had 3 ER hospital visits (14 total). Multiple misdiagnoses. Ultimately, it ended up with her having to be resuscitated in the ER for them to finally determine what was wrong. Early symptoms started with Emily having eyelid swelling with continued congestion starting in early November. Antibiotics didn’t work. Emily did respond well to multiple steroid courses. But once the steroids wore off after 4-5 days, swelling would instantly return. The allergist determined it wasn’t an allergic reaction.
On 12/16/24, Emily went to Lurie Children’s Hospital of Chicago for respiratory distress with cyanotic episodes and low O2 saturation. Emily then went into cardiac arrest twice while in the ER. She was in obstructive shock with cardiac tamponade (fluid buildup around the heart). Luckily, before the arrest, she had a chest x-ray that showed the fluid. The whole left side of her chest was filled with fluid compressing her heart. Doctors quickly removed about 1 liter of fluid from around the heart. After a difficult intubation, she was then placed on a ventilator. A mass was found compressing the superior vena cava (SVC, a large vein carrying blood from the upper half of the body to the heart) and left main stem bronchial. Her left lung fully collapsed, and x-ray showed bilateral pleural effusions, worse on the left. The left jugular vein was completely obstructed by a blood clot. Emily was taken up to PICU in critical condition and placed prone while on the ventilator to help reduce the pressure of the mass inside her chest. She was given sedation and paralytics. The team placed femoral and arterial lines for medications and monitoring. Emily needed a chest tube placed to help remove fluid around the left lung. Because Emily was still in critical condition, all procedures were done bedside. She was too unstable to leave the ICU floor.
On 12/17/24, the doctors were able to take a biopsy of the mass, bone marrow, and cerebrospinal fluid (CSF) with a lumbar puncture. X-ray showed a necrotic mediastinum (chest) mass measuring 6x7cm. Emily’s malignant mass was diagnosed as Stage 3 T-cell Lymphoblastic Lymphoma. This type of cancer is an aggressive, rare form which requires a very aggressive treatment plan. It’s even rarer for her age. She started chemotherapy immediately. Emily remained sedated and paralyzed for 4 days. Hopefully, by shrinking the mass, her lung would open back up. Emily slowly got better each day and her breathing became easier.
On 12/21/24, Emily started to open her eyes. She wanted to be out of bed and held. The next day, Emily self-extubated while doing vent pressure support tests. Emily stayed a total of 7 days in ICU and was transferred on Christmas Eve to the Oncology floor for another 5 days. She was released from the hospital on 12/28/24.
Emily is still very weak and will need physical, occupational, and speech therapy to regain strength. She has a PICC line for her IV chemotherapy medications. She will eventually need a port. She also has a nasal gastric feeding tube for nourishment 5 times a day. Emily is expected to need chemotherapy for about 2.5-3 years. There are weekly trips to Lurie for chemo and testing for the first 10 months, then monthly treatments after. Emily will require multiple hospital visits, chemotherapy sessions, and unexpected hospitalization for when she has low immunity (neutropenic), requiring blood transfusions or IV antibiotics for infections. Currently, with Emily’s extensive treatments and required 24/7 care, her parents are taking time off from work to help care for her.
Please keep Emily and her family in your thoughts and prayers as they fight together to help this little warrior. She got this!
Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year.
