Thursday, February 24, 2011. It was a cold, gloomy winter's day around the Baltimore-DC area. That was the day everything changed for our baby girl. Maddie was just getting over an ear infection, and we were 3 days removed from her big sister's 3rd birthday. Out of nowhere, her left foot - just the bottom of it - was red, swollen, and hot to the touch. We wondered if it was an allergic reaction, maybe to the antibiotic, or maybe to something she had eaten. My wife had just finished setting up an appointment with the pediatrician for the next morning when Maddie presented her first blood-stained diaper.
I was already on the train, on my way home en route from Washington when I got the frantic phone call. I met my wife at the hospital. After hours of waiting and monitoring, the attending ER doctor came in, did a quick examination and felt a mass in Maddie's lower left abdominal area and quickly dismissed any possibility that this was simply an allergic reaction. After running tests and sending Maddie to radiology for ultrasound, it wasn't long before they told us they needed to pass her case on over to Johns Hopkins Hospital. We were transported by ambulance in the middle of the night. Talk about suffocating terror.
Once at Hopkins, they re-ran every test and imaging procedure performed at the other hospital, except to look for additional issues. By dawn, doctors started giving us some real attention. Later, they said that they'd be carting Maddie upstairs to a room in the pediatric oncology unit. 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 was that Maddie probably had a Wilms tumor. It's a rare, non-hereditary cancer, but her case would seem to be a textbook presentation. The tumor, they said, was bigger than her liver and had only been growing for a few weeks. They thought it was roughly the size of a grown man's fist. They explained that this type of tumor grows out from the kidney and tends to push everything out of its way in the process, placing great pressure on other internal organs and blood vessels in the abdominal region. The reason for the blood in her diaper was that the tumor was smashing her kidney into her rib cage.
The treatment for Wilms Tumor is hours of surgery to extract the tumor, the kidney, the adrenal gland and some lymph nodes, followed by radiation treatments and months of chemotherapy. These prospects are horrific enough for an adult, and that Maddie had to endure it at the tender age of 7 months... well, my words fail me. Maddie's surgery went well, but was unexpectedly intricate. Her tumor had layered on top of and adhered itself to several organs and systems; it was stuck to Maddie's colon, spleen, intestine, pancreas and major blood vessels. The task of delicately separating the tumor from them was arduous. The potential for a catastrophic accident or complication was high. An accidental nick here could have caused Madeline to bleed out, an accidental poke there could have created the perfect conditions for sepsis or bladder problems. In less capable hands, we might have been making funeral arrangements instead of marveling at her recovery.
Maddie's physical recovery was something else. Within 2 days of having her belly sliced wide open, she had her feet back up in the air, trying to get her toes in her mouth. Several days later, though, she still wasn't eating, and she was getting sick about every 45 minutes. It turns out that scar tissue from the surgery was already attaching itself to her large and small intestines, cause them the telescope into each other creating a major intestinal blockage. More surgery followed.
We finally got her eating again. After spending nearly a month in the hospital, we brought Maddie home. Her surgeries were followed by several radiation treatments and several months of chemotherapy. Our worries turned to keeping her healthy, and we ended up with a few extra stays at Hopkins along the way. She finished treatment protocol at the end of August 2011, and scarcely lost a lock of hair until her final treatment.
She's doing quite well now, showing no evidence of disease and acting every bit like a 2 year old beauty should. "Wilms kids" have a terrific prognosis when everything is caught and acted upon quickly. A 90% cure rate, they say. We can only hope and pray for that.
Even facing such good chances of being fully cured, we still have extended cause for worry. Over 60% of long-term childhood cancer survivors have a chronic illness as a consequence of the therapy they received, and over 25% have a severe or life-threatening illness. The health risks survivors face as they age depend on the exposures they received as treatment for their cancer. Each chemotherapeutic agent, radiation dose or surgery has unique potential long-term consequences. The health risks include second cancers, heart disease, infertility and many others. These are risks we bitterly accepted - what other choice did we have when our baby's life hung in the balance? - and acknowledge that we may need very well need to those serious health concerns down the road as a result.
This is why your support matters.
