Yesterday I woke up super early and felt compelled to write a thank you note to Ana’s care team. I’d meant it to be a quick thank you for all they’ve done. But it turned into something much more personal for each of her individual doctors and I’m compelled to share it with all of you.
When cancer progresses to the point of no return, when treatment fails, when our prayers and hopes don’t stop death, we tend to see it as a failure. We use language akin to war: lost the battle, succumbed, brave fight…And while we desperately need more funding for childhood cancer research, I think it’s important to remember that our children hear this language and so do their care providers. I hope that Ana didn’t feel like she failed us. Some of her very last words to me were, “I’m sorry” – as she grew weaker, slept more, and became unable to do the things she felt she should be doing.
It is so important to recognize the successes of treatment. Ana was a fighter. But I never used that word in front of her. I told her she was strong, determined, and even stubborn. When she felt despair, which was often, I told her that each procedure and treatment had given her more time to fill her life with experiences and people – like her dearest friends, Evi and Marissa, who would not have had the time to bond so much with Ana if not for her last surgery in December 2015. I found a picture of them on her phone which I’m sharing here.
So, after all of that, here’s my letter.
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. Yamashiro, 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. Martinez, 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. Kato, 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 disease and countless medication changes. Though her surgery last December ultimately slowed her progression rather than stopping it, she had many months of feeling good which enabled her to live the life of a normal teen for one more year.
Dr. Middlesworth, your honesty and focus were sometimes hard to hear, 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 difficult to find – at least from the perspective of the patient. When Ana’s tumors returned last year, we knew that pushing more surgery or invasive treatment would cause more harm than good and 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.
Elisha, 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.
We’re planning a memorial for Ana the week of May 16th (it would’ve been her 16th birthday). We’re working out the details of this now, but it may happen on the 16th which is a Tuesday or, more likely, the weekend before or after her birthday. You are all lovingly invited to attend and celebrate her life with our family and extended community.
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,