We made it! One year ago today, we learned the horrifying news that Robin had acute lymphocytic leukemia. I will never forget Dr. Gonzalez in the ER saying, “I won’t lie to you, it is something serious.” And then meeting Drs. Adams and Meyers, our oncologists, for the first time. And seeing Robin in her white frilly slip, her dancing dress, hooked up to an IV, receiving an immediate blood transfusion. And, of course, what started it all, the phone call from the pediatrician to my cell, “Her hemoglobin is critically low. Go straight to the emergency room.” I shook during that drive with one eye on her in the rear view mirror, hoping she would not pass out.
What a year. 27 days inpatient in Children’s Hospital. Sedating her more times than I can count in order for her to receive chemotherapy in her spine. Holding her down while she had her PICC line inserted a few days after the diagnosis. Jon and I holding the first dose of chemo, talking to it, telling it to do good work. Steroid rage like you cannot imagine. Sedating her in the main operating room when her port was placed. Meeting Robin’s “team” for the first time, strangers then, friends and confidantes now.
What a year. Robin zooming through the halls of Children’s Hospital on her tricycle, mask on, headed for the play deck. Dining on spaghetti and marinara meal after meal. Days where nothing but chips were consumed. Going at least 2 weeks without a bath in the hospital. Stroking her head while her long hair came out in clumps. Remembering Dr. Adams’ words, “She will be fine.” She will be fine. She will be fine.
These are just some of the thousands of memories I will always carry with me from this journey. Walking into the hospital on Monday for Robin’s clinic visit brought it all back so vividly, like it was last month, not last year. Something about the summer heat and the cool institutional air. The days spent in the hospital, leaving each evening with infant Henry, remembering that it was, in fact, summertime.
And then to be in the emergency room Monday night with Henry brought it all back again. I walked down the hall to see the room where we received the news. As I told the nurse that night, my eyes teared up. “One year ago, my daughter was diagnosed with leukemia.” I haven’t had to say the words that much over the year. Each time I do, though, it is hard. I wonder if I will ever get used to it. How could it be?
How could it? I don’t know, but it is. And we have managed. A friend recently told me, “You have done more than managed. You have thrived.” Thank you, friend. Thank you. I like to think that we have thrived too. We have tried to have fun, to seek adventures, to be tender, to be compassionate, to trust and to be patient with one another. We have thrived under the most harrowing and most difficult of circumstances. It has not been easy at all. Every day is a challenge. I will not lie. Whether it is dealing with a child on chemo, confronting our fears as parents, attempting to maintain a marriage, or raising a toddler in the midst of it all, it has been a challenge.
But it has truly made me savor every single moment. Even the bad ones. I relish the time spent with my family more than anything I could even imagine (Okay, sometimes escaping to Bora Bora sounds really good). I am thankful for every single day that we have together. I feel like this year has created a new part of my brain, a part that remembers every moment, a part that maybe had been lost before. This is a gift from leukemia to me. The ability to remember the moments.
To everyone who has helped us along the way, thank you. Thank you for keeping Robin in your thoughts. Your phone calls, emails, comments on this blog, prayers, good wishes, and vibes are working. You strengthen me, and in turn, you strengthen us. Finally, while I struggle with issues of faith, I do believe in angels and I know there are two particular angels keeping watch over our dear girl. While we miss them terribly, we know that together, they give Robin the power to endure and to thrive.
Onward!
Sara
4 weeks ago
