Thank you all for your dedication, compassion, and remarkable persistence in managing Ana’s complex disease over the last four years. Jim and I are truly grateful for the care Ana received and your careful patience in delivering this care.
Dr. Y, you honored her wishes every step of the way and used your intellect and expertise to help find treatments that allowed Ana to enjoy her life despite the frequent setbacks of her disease.
Dr. M, your compassion and fierce guidance helped educate us on how to properly care for Ana pre-and post-transplant. She took every dose of medication, every day, up until the morning of the day she died.
Dr. K, you saved her life twice. Her new liver was strong – it withstood many medication changes, and kept her body as healthy as possible under the incredible burden of her disease and treatment regimen. Though her surgery last December ultimately slowed her tumor progression rather than stopping it, she had many months of feeling good that enabled her to live the life of a normal teen for one more year.
Dr. M, your honesty was sometimes hard to bear, but it was clear you cared. I’ve never forgotten your words the night Ana was hospitalized – words that upset me then, but I’ve grown to appreciate now. Truth in medicine is a rarity, at least from the perspective of the patient. When Ana’s tumors returned last year, we knew that pushing additional surgery or invasive treatment would cause more harm than good. That knowledge gave us the guidance we needed to start her on hospice, which ultimately allowed us to honor her wishes to die at home.
Dr. W, you were essential to us these last few weeks. Your willingness to pick up the phone, answer a text, and send an email regardless of day or time was a tremendous comfort. Rural hospice is lacking, particularly for children. Without your guidance and vast expertise, we would’ve been completely lost. We weren’t alone. You were our final Sherpa and, because of this, Ana’s last days were nearly painless. Jim and I were at her side when she died peacefully in her own bed.
Jillian, Debra, Kim, you are the backbone of patient care: making sure Ana got her meds, her insurance approvals, granting wishes, and paying our bills so that we could continue to focus on allowing Ana the freedom to live her life the way she wanted. It would all grind to a halt without you.
Thank you for choosing to work with the sickest children. You are needed, you are appreciated, and you are all heroes in my eyes.
With love and gratitude,
A version of this letter was previously published on www.healingana.com