Today, we were discharged from the hospital—a feeling I can only describe as a bittersweet kind of “jailbreak.” Hazel had just survived another grueling round of chemotherapy, and while leaving the hospital should feel like a victory, it also carries a weight of anxiety, exhaustion, and lingering uncertainty.
This round of chemo lasted longer than expected. The ifosfamide caused some neurotoxicity, which forced us to pause it on Sunday and then administer it on Monday at half speed. 😔 Her electrolytes were unstable, so yesterday was spent correcting them, carefully balancing every level to ensure she stayed safe. By morning, we had a spine MRI scheduled. The results brought a small sigh of relief: there were no new findings beyond what we already knew—the tumor on her L2 and L3 vertebrae. Even that small measure of stability felt like a victory, a reprieve. My heart can’t handle more bad news right now. 😰😰
The challenge now lies in planning for the next steps. Hazel’s brain and spine require a completely separate treatment plan from the rest of her body. This means that while we continue treating the disease elsewhere, we must simultaneously pursue another intensive plan for her central nervous system during the weeks in between. Just thinking about it is dizzying, almost incomprehensible. 😵💫
With all of this in mind, we made a difficult decision. We were supposed to head home today, but after weighing the risks, we chose to stay in NYC while Hazel recovers from this harsh round of chemotherapy. I have only spent eight days at home in the past fifty. To give up the chance to be home for months felt devastating. I miss my husband. I miss my kids. My littles need their mom, and I am painfully aware of that absence. 😭
The decision was guided by medical necessity. Hazel’s platelet count must remain above 50,000, and obtaining platelets at our home hospital is not easy. Meanwhile, my two youngest children at home have been battling fevers and vomiting, making a brief trip home too risky. The plan is for Hazel to remain outpatient for a short window until Sunday, but once her immune system bottoms out, she will almost certainly experience a neutropenic fever, requiring another inpatient stay. For now, staying is the safest choice, but the emotional toll is heavy.
We are trying to figure out ways for the rest of the family to visit in the coming weeks. Logistics are tricky: hotel rooms are too small, and the Ronald McDonald House has a five-person limit. Airbnbs are astronomically expensive, and Hazel needs to remain in the city for appointments, even as an outpatient. We are doing our best, but it’s a constant juggling act. Tim has taken on the dual role of both parents at home while also managing work obligations, a task that leaves him exhausted and stretched thin.
Please, I ask for prayers—prayers for Hazel, for her healing, for relief from side effects, for comfort, for her appetite, and for moments of joy despite the battle she fights every day. Pray for Tim as he navigates both our roles at home, balancing work, kids, and the needs of a daughter in treatment. Pray for our family as we endure these long separations, the divide and conquer strategy that feels as draining as it is necessary.
Hazel is tiny, but she is fiercely brave. Every day is a fight for her life, and yet she continues, one step at a time. I am humbled by her strength and grateful for the army of supporters, friends, and prayer warriors walking this journey with us. It already feels like a lifetime, yet we push forward, holding onto hope and faith.
For those who asked, here is the Amazon wishlist link. I’ve included gift cards for places near our home so Tim has some support on the days when cooking isn’t an option. Hazel doesn’t allow me much free time, but this small gesture helps us a lot. 💙
