Dear Madeline,
In your brief 7 months of life, you've managed to humble your old man on a daily basis. From the date of your birth to this morning, I've felt challenged by you and rewarded for the effort. We've shared sleepless nights, we've had our fights, and we've worn each other down into submission. Your mom and I often looked at each other in astonishment and defeat, wondering why your first months have been so difficult for such a young baby, especially given your more recent instances of spitting up almost the entire quantity of any amount of bottle you consumed, loss of appetite, intolerance of sitting up and laying on your back for anything more than a few minutes, and general crabbiness.
Last week, you developed an ear infection and, a few days later, you began your first course of antibiotics to treat it (even if the pharmacy forgot to add the compounding liquid to the powder). That gave you some brief relief from Monday night into Thursday morning. Then your mom noticed an odd reaction in your foot: redness, swelling, it was hot to the touch. We wondered if it was an allergic reaction. Just after Mom set up an appointment for you with the pediatrician for the next morning, you presented your first blood-stained diaper.
Your mother told me immediately. I was on the train on my way home from work in Washington, engrossed in conversation with my travel mates, and I felt my face go ashen. I told your mother to just race to any ER, that I'd get off the train in Baltimore and meet her anywhere she was. I was stunned and scared by what she told me, but thought this was nothing more than a dramatic allergic reaction to your first run of penicillin. How wrong I was.
After being examined at St. Joseph Medical Center in Towson, the staff realized there was much more to your story than a simple ear infection. The attending ER doctor felt a mass in your lower left abdominal area and quickly dismissed the allergic reaction theory. After running tests and sending your to radiology for ultrasound, it wasn't long before they told us they needed to pass your case on over to Johns Hopkins Hospital. Hopkins is a world-renowned hospital with best-in-class doctors and nurses, perennially ranked #1 in the United States in many major specialty areas. The hospital draws patients from not just around the country, but around the world. Your mother and I received the news of your impending transfer with a mix of terror and confidence. Mostly terror. Okay, it wasn't so much a mix of emotion as much as it was a layering, and the terror was suffocating.
Once at Hopkins Children Center, they re-ran every test and imaging procedure you just had done at SJMC, except to look for additional issues. The waiting was torture for us, and you did not tolerate the poking and prodding and lack of sleep well at all. A few hours later, doctors started giving us some real attention. Later, they said that rather than give you a room in the pediatric intensive care unit (PICU), they'd be carting you upstairs to pediatric oncology. That the stated reason for this was to access medical expertise rather than to confirm a diagnosis was immaterial. We heard oncology... cancer... and broke down in tears.
As time slowly marched along, we learned that the predominant thought developing among the oncology and surgical teams is that you probably had a Wilm's tumor. It's a rare, non-hereditary cancer, but your case would seem to be a textbook presentation. They explained that this type of tumor grows out from your kidney and tends to push everything out of its way in the process, placing great pressure on the rest of your insides. The treatment is surgery, and can be (but not always) followed by chemotherapy, and the prognosis is terrific.
We were told that there's a 95 percent cure rate for Wilms tumors, if a Stage 2, and that surgery can sometimes be the only action needed to cure it. Between this and the other possible tumor types they discussed, we obviously set our hopes and prayers on this being a Wilms. The tumor, they said, is bigger than your liver and has only been growing for a few weeks. They think it may be roughly the size of my fist. It is so hard for me to comprehend how something so big could be growing inside your little body. To make it more incomprehensible, we found out a little later that the surgical protocol call for the removal of not just your tumor, but your affected kidney as well. One day, we'll look back on this and appreciate the magnitude of what happened, but for now, it's the scare of our lives.
It's hard for me to fathom how quickly we leaped from allergic reaction to cancer, and we're struggling to stay on top of all of the information we've been getting. Here we are just 48 hours after arriving at Hopkins and you're being prepped for major surgery in a mere matter of hours, if that. We thought that having two young kids would be quite the parental adventure. HA! I think we amuse God sometimes with our simple ideas, who clearly has more significant plans for you, and for Mom and Dad your sister too than we ever contemplated.
Baby girl, people across the globe are praying for you, for all of us. Your mom and dad, well, we've been praying and crying and learning non-stop since we've been here. Your grandparents have been along for most of that short ride as well. We all love you so very much, and are anxious to see you come out of surgery today and begin the long road of recovery and medical surveillance. We'll be making lots of new friends along the way.
Love,
Daddy
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