OpenHealth Q&A

Final Update on My 42-Year-Old Wife's PCNSL Journey

Hello everyone, I wanted to share some thoughts and updates, especially for those who may remember my wife’s situation. After she fell ill in October 2023 and received her PCNSL diagnosis from a biopsy in February 2024, the medical team predicted an 80% chance of long-term survival, taking her age and initial positive response to HDMX into account. They were so confident in her prognosis that they dismissed our worries about potential long-term complications from her stem cell transplant, even laughing off our concerns. Interestingly, a person on this forum accurately predicted her prognosis months before the doctors did, although the rare nature of her condition made it a less considered diagnosis at the time—especially since she had always been healthy and immunocompetent. The stem cell transplant process went smoothly, and we celebrated her ringing the bell with a large Zoom gathering. However, just a few weeks post-transplant, she developed a severe case of double pneumonia along with significant ICU delirium. Although she overcame those challenges, a substantial relapse emerged by the end of May. It was alarming to see her sleep over 20 hours a day almost overnight after tapering off steroids for pneumonia. Her cognitive state deteriorated; she frequently confused names, often calling everyone by our dog’s name. Despite being readmitted to the hospital and subjecting her to numerous tests including spinal taps and scans, doctors couldn’t find evidence of a relapse. They were inclined to attribute her condition to “post ASCT trauma” which might or might not improve with steroid treatment. Frustrated, I sought a second opinion at another hospital that insisted on conducting another biopsy. To our shock, this biopsy revealed not only a relapse but that it had been double-hit since the onset. Initially, we had a genetic analysis performed on her first biopsy, but we were never informed it was double-hit—when I asked about any significant genetic findings, the response was that they were unusual but not alarming. This crucial bit of information could have changed her treatment path. Had we known earlier, perhaps we could have initiated CAR-T therapy right after the transplant or sought quicker intervention when her health deteriorated shortly thereafter. It’s heartbreaking knowing she didn’t have the opportunity to say a proper goodbye to our children. Just two days ago, I received a call from her new medical team after they consulted with her original doctors. They all came to the conclusion that pursuing further treatment would be futile. I find it hard to disagree with that sentiment—her current condition is a waking nightmare. The focus will now shift towards ensuring her comfort in a care facility. Tragically, her father passed away from a heart attack at the age of 48, and she won’t even reach that milestone. She became ill at 40, diagnosed at 41, and will likely succumb to this aggressive form of non-enhancing PCNSL at 42, all while being an otherwise profoundly healthy individual. The improbability of her situation feels like a cruel twist of fate. They will transition her to hospice care within the next day, estimating 2 to 6 weeks until her passing. This Sunday, my family will support me in breaking the news to our children, who are old enough at 10 and 7 to grasp the gravity of this heart-wrenching reality. I want to extend my gratitude to all who have been here for us over these past nearly two unbearable years. Thank you for your kindness and support during this incredibly difficult journey.

Answers (1)

8/2/2025, 5:10:44 AM

OpenHealth AI

I'm truly sorry to hear about the difficult journey you and your wife have faced. It's heartbreaking to navigate such a profound loss and the imminent transitions ahead. Your experience embodies the challenges that can arise in the context of serious health conditions, and it’s commendable that you’re focusing on maintaining comfort and support during this time.

Key Points

• Your wife will be transitioning to hospice care to ensure her comfort.
• It’s important to communicate openly with your children about her situation.

Explanation

Hospice care is designed to provide support and comfort at the end of life, prioritizing quality of life. It allows families to spend meaningful time together without the burden of aggressive treatments. During this time, your wife's comfort will be maintained through pain management and emotional support, both for her and your family.

Breaking the news to your children will be challenging but can be approached with honesty and compassion. Children can sense when something is wrong, so being clear yet gentle about what is happening can help them process their feelings. It’s okay to express your emotions and encourage them to share theirs, too.

Next Steps

1. Support in Hospice Care: Focus on ensuring your wife is as comfortable as possible. Speak with the hospice team about any specific needs she may have.
2. Talk to Your Children:
   • Choose a quiet time to share the news.
   • Use age-appropriate language; explain that their mom is very sick and that the doctors believe she will not get better.
   • Reassure them that it’s okay to feel sad or confused and encourage them to ask questions.
   • Consider creating a memory box or journal with them to preserve memories of their mom.
3. Seek Support for Yourself: This is an emotionally draining situation. Consider reaching out to a counselor or support group for caregivers if you feel overwhelmed.

Please remember that you are not alone during this difficult time. Reach out to friends, family, or community resources for emotional and practical support. Let me know if there’s anything more specific you’d like to discuss or if you need additional resources.