Hazel at Her Lowest, But Not Alone: Courage, Faith, and Family Support.1267

The past week has been one of the most challenging yet in Hazel’s journey. Her immune system is at its lowest point, leaving her vulnerable to infection, and yet she has shown an incredible resilience. In just five days, she has received six platelet transfusions and two red blood transfusions. Her white blood cell count (WBC) and absolute neutrophil count (ANC) are at 0.0 — a stark reminder of how fragile her tiny body has become. Despite this, she has not developed a neutropenic fever and has avoided any infections or viruses. This alone is a miracle, a testament to her strength and the vigilance of those caring for her. ❤️

Hazel’s family has been navigating the complexities of care around the clock. She needed to be readmitted to begin TPN (total parenteral nutrition) after struggling with severe vomiting. On both Friday and Sunday nights, she projectile vomited for hours, bringing up yellow bile and undigested milk repeatedly from 6 p.m. until 4 a.m. The sheer volume of what her body rejected explains the weight loss she has experienced despite her appetite. Her medical team has a GI consult in place, hoping to find solutions that will allow her to retain nourishment and gain weight safely.

In the midst of this medical storm, family support is arriving. Hazel’s extended family is coming to New York City for a weekend visit — a rare opportunity for connection and comfort amid the rigorous hospital schedule. Emma, Hazel’s older sister, will celebrate her 10th birthday while they are in the city. This milestone, a bright spot in the midst of ongoing treatment, offers moments of joy and normalcy in the family’s otherwise high-stress environment. 💜

Medical decisions continue at a rapid pace. Testing schedules are being adjusted to allow Hazel’s care team more time to formulate her plan. Additionally, the family has secured a second opinion at CHOP, known for their experience with familial neuroblastoma. This decision reflects a desire to explore every possible avenue for Hazel’s care and to ensure she receives the best guidance available.

Pain management has been another critical challenge. Hazel has required morphine several times a day. Finding the correct dosage has been tricky — too little leaves her in pain, while too much causes disorientation. Eventually, the team found a balance at a very small dose of 0.16 mg. Even at this tiny amount, the morphine makes a dramatic difference: Hazel is able to play, smile, and exhibit her normal baby behaviors instead of being consumed by pain or discomfort.

Through it all, Hazel’s mother has navigated an overwhelming array of responsibilities. From ensuring her daughter’s nutrition, managing nausea, coordinating medication, and supporting her family, to handling housing changes and constant logistical challenges, every day feels like an impossible balancing act. She describes herself as a “computer with too many open tabs,” and the truth is that each new challenge amplifies the complexity of daily life. Yet, through the chaos, Hazel remains the focus — the reason for every effort, every decision, and every moment of endurance. 🥰

Faith remains central to the family’s journey. They ask for prayers for Hazel’s healing, her recovery, pain management, relief from nausea, and most urgently, for her to gain weight. They believe God can heal her, and each answered prayer strengthens their hope. 💛 Many have inquired about supporting the family financially for meals, activities, and accommodations during this difficult time. While no GoFundMe exists, they graciously accept support via Venmo or PayPal, emphasizing that the most meaningful gift is prayer and emotional support.

Hazel’s story is not just about illness. It is about resilience, courage, and the extraordinary bond of family in the face of unimaginable challenges. Each platelet transfusion, each sleepless night, and each dose of morphine represents her unwavering fight for life. Every visit from family, every moment of play, and every milestone, like Emma’s birthday, brings light into the hospital walls. Hazel is more than a patient; she is a little warrior, navigating pain, fear, and treatment with remarkable courage.

Even at her lowest, Hazel’s spirit shines. She is not alone, and with the love, faith, and support surrounding her, she continues to face each day with bravery and determination. 💜💜💜