I was 26 when my son was diagnosed with cancer and 28 when my daughter was born 16 weeks early.
When I think about how young I was, especially with Jackson, I want to go back and just sit awhile with that scared mother. The one who was afraid to pick up her 13-month-old when he'd had surgery and who had no idea how to give shots or hook up IVs.
Along the way I've gotten smarter, bolder, stronger -- more worldly and world-weary. I've had the privilege of sharing this journey with people who want to learn what I've learned -- most recently, at a meeting of fellow volunteers just this week.
In telling my own story this last time, I realized my most vivid memories are conversations I've had with doctors. I remember what each doctor said verbatim; I can recall where I was sitting or standing, the doctor's facial expressions and how their words made me feel.
It's a complete mix of life-changing highs and lows. And it's worth the read.
1. "The Redskins are going to be calling."
Jackson and Abby's pediatrician is such nice man and caring doctor. They both adore him, his staff and their short time with him. Even when they're sick and we go there, somehow they perk up like they haven't been crying and feverish all day. The sign of a good pediatrician is someone who makes you feel like your kid is the cutest, smartest, most advanced child ever born, and that you are doing the best, most wonderful job as their parent. Back when Jackson was a baby, his pediatrician used to joke that the Redskins would be calling because he was in the 99th percentile for height and weight in his first year. It cracked me up, and reassured me I was doing this brand new job right.
2. "The right side of her brain is trash."
Yes, someone said that to me. Abby had acute hydrocephalus in April 2012 and Everett and I were getting ready to schedule her shunt surgery. She was getting one more tap through her soft spot to relieve spinal fluid buildup/pressure on her brain. The doctor meant for it to be funny, but it was a terrible, mean joke. I already felt the weight of the world and I couldn't believe someone would say that. Even with a grade 4 brain bleed and an uncertain neurological future, there was nothing on my child that I was going to throw away. Especially not her future. We found a new doctor.
What would have been better to say? "Babies are resilient and so are their brains. We're going to do the very best we can to get things right for her."
3. "Well, it could be Wilms' Tumor or Neuroblastoma. You don't want Neuroblastoma."
The Sunday afternoon we took Jackson to the ER, we met with countless doctors and residents. We were told there was a mass in Jackson's abdomen. Sitting down with the ER physician, I remember her telling us about all the different things it could be. A kidney malformation, which was unlikely, and cancer. She told us about two types of cancer, an easily cured one and one that was a really terrible one. Guess which one our son ended up having? How do you think that young mother felt, knowing the little she did about pediatric cancer from this doctor?
What would have been better to say? "There are several types of cancer and we won't know what kind your son has until we do more testing."
4. "Yes, she'll walk."
After getting a second opinion for Abby's brain surgery, we saw immediate improvements once she received her ETV/CPC surgery instead of a shunt. Once she was discharged from the hospital, we came back for one more post-op appointment before flying home from Boston. I asked the question that no one seemed to want to answer for me: do you think she'll walk? Yes, she'll walk, he said. These words were like my first deep breath and exhale in weeks. He knew her brain, both in surgery and on MRI, and he didn't give me a frustrating, generic answer. He told me the truth as an expert looking at just her.
5. "I got it all."
Anyone with a loved one who has cancer knows how scary surgery can be. After around five hours of surgery, we met with the surgeon to talk about how it went. After all the details about how he searched from chest to pelvis, how the tumor came out and the number of lymph nodes he took for biopsy, the surgeon opened up to my many questions. But after you hear him say he was confident that yes, he got it all... you don't really hear much else. There was nothing but sweet relief and that little flicker that grew brighter: hope.
6. "How do you think it's going?"
Jackson went through a brand new treatment at our home hospital called immunotherapy. He was the second kid to receive it and he got almost every single side effect in the book. It was pure torture. The first session we didn't pre-medicate well enough and the nerve pain got so ahead of Jackson that he cried until he went hoarse. It was horrible. I was panicking. The nurses and I were trying to figure things out when a resident popped his head in and nonchalantly asked how I thought it was going, barely looking at Jackson. I very firmly told him NOT VERY WELL AT ALL.
What would have been better to say? "It looks like he's struggling. We're going to fix this." Of course, that would have been said after actually looking at my son.
7. "I'm just going to stand here and watch."
After Jackson's surgery, he had IVs in both hands and feet, not to mention his double lumen central line. His epidural wore off overnight and the pain medicine he was on did not cover his pain. He was crying, while intubated, and his heart rate was through the roof. The nurse paged the pain doctor, and the on-call resident came to see what she could do. When you know a resident is coming in the middle of the night, you feel like you're getting the B squad. But this resident was fantastic. She listened to my concerns, and administered some more meds and then said she was going to watch him for the next 20 minutes. Not "I'll check back in," or "call me if it doesn't work." She literally stood at his bedside, quietly, and watched him. She was able to make other suggestions and bring his pain down within an hour. I just wanted to hug her!
8. "Ask Mom, she'll know."
I loved Jackson's oncologist. Still do. He knew I was part of Jackson's health care team, his constant common denominator, and he trusted me. It made me feel accepted and relieved that he saw me as valuable to Jackson's well-being and continuity of care. It gave me confidence, too, to speak up when I wasn't sure I approved of a treatment or to question how things were done.
9. "Mom, it's not your fault."
In the NICU, I had major mommy guilt about Abby's indefinite digs. I felt bad that my body had failed her, and every once in a while, I'd find a way to ask if I should have done something differently. I remember sitting at the computer, looking at Abby's latest sector scan of her brain with the attending neonatologist, and asking my typical battery of questions. He turned to me and looked me in the eye, asking if I was feeling guilty. I know I welled up (because when did I not well up in the NICU?) and he told me point-blank that everything she was going through wasn't my fault. He was Abby's doctor, but he was my doctor in that moment too.
10. "I'm the Captain America of no shunts."
One of my favorite doctors' quotes comes from Abby's current neurosurgeon. We've been hemming and hawing lately about another surgery, and this quote cracks me up still. He knew how much we didn't want to shunt Abby, and he found a funny way to tell us he was on the same page. He already has superhero characteristics in my book. Doctors, your white coat can be your cape.
The bottom line is, sometimes there is no good news. But all news should still be delivered with kindness and compassion. When doctors leave that out, a major breakdown occurs. Trust wavers. Anxiety skyrockets. Sure, what you say matters, but how you choose to say it matters even more. Caregivers can be a doctor's best friend and their greatest ally, if that relationship is built on mutual trust and nurtured in the right way.