It all started at 1:00 in the morning on June 23, 2010. Macie called out and we heard her on her baby monitor. This was not unusual as she frequently needed something in the night - like to be covered up or a drink of water or some other silly thing that two-and-a-half-year-old needs. When I walked in her room she was sitting up and crying - hard crying - not messing around crying. Her tummy hurt she told me. I thought maybe she was having gas pains or needed to go to the bathroom. I coaxed her into the bathroom, but she didn't need to go. She just kept crying and crying that her tummy hurt. I took her back to her room and just kept crying out in pain and discomfort. I had never heard her cry like that. We were out of ideas to try to comfort her. We were thinking maybe a trip to the ER was in order. But then we gave her a little water. In a few minutes she vomited it back up. At that point we felt relief - thinking it must be a stomach bug, no big deal. She drank a few more sips and got sick a few more times. We decided to wait it out and wait for the Urgent Care to open at 7am. You know, just to be sure it was nothing else - to rule out any other issues.
I made a cozy bed on the couch for Macie, turned on a movie and we both dozed a bit waiting for a trip to urgent care. By morning we almost decided to skip urgent care all together. But just to be sure we took her in. She had a fever, tender tummy and was clearly nauseous. Most likely the stomach flu the doctor told us. We went home bracing for a few days of a sick little girl. Ugh, I'd have to call work and miss work, that sort of thing. Macie got sick a few more times and then basically only sipped water every so often. Whenever I asked how she felt she said her tummy hurt and it wasn't better. But she was more or less resting so we thought she was okay. She even slept through the night. The next morning, she started complaining more about the pain. However, this time she was adamant that her tummy only hurt on her right side, nowhere else she would tell me.
My husband was working from home that day, so I went downstairs and had him Google appendicitis in little kids. You see, his oldest daughter had appendicitis when she was eight, so it was maybe a bit more on our radar than it would have been otherwise. He looked it up and although rare in children so young, it can easily present like stomach flu. So, we called the nurse line at our clinic and explained what was going on. She said that although it was most likely just the tummy thing, we should bring her in.
So, we packed her up and drove to the clinic. She was really hurting and feeling miserable. But she was so stoic, really holding it together. The doctors determined right away that it was more than the flu. They were concerned about her fever and high blood pressure. They told us that we should go ahead and go to the hospital and they'd call ahead and we would have her admitted straight to the pediatric unit. More and more it was looking like appendicitis and the concern was that maybe it had already ruptured.
Once at the hospital they explained that in little kids there aren't a lot of conclusive tests to determine appendicitis. So, since it was all pretty consistent with appendicitis they decided to go ahead and book the OR. We waited for most of the day and poor little Macie was pretty uncomfortable the entire time, despite a variety of pain meds. We went down to the OR and waiting with her while the Anesthesiologist got her ready. We kissed her goodbye and they wheeled her away. It wasn’t something you wanted for your little girl, but it also wasn’t a big deal. Macie’s older sister had had it, her cousin, even her grandma had had it too. We thought she was “joining the club.” We were just hoping it hadn’t ruptured.
We went to the waiting room, surrounded by family and waited. They said they’d call us on the waiting room phone when they were done. Then the phone rang and everything changed.
My first thought was, “gosh, that was fast.” My husband answered. I could hear bits of the call standing next to him, but I could tell immediately that something was off, something was wrong. They told him that her appendix was fine, not inflamed at all. So, they started looking around and they discovered that something was wrong with her kidney. “Had Macie experienced any trauma? Any falls?” they asked.
No trauma, there was nothing, nothing that we knew of, but we’d call her daycare provider just to double check. They said they’d call back in a while. It appeared that her kidney was fractured. FRACTURED??? That sounded awful. She was stable, so they were going to leave her opened up while they waited for the Urologist consult. They would call us back.
I don’t think I had any clue how serious that was. How fast things were going to head downhill. I remember picturing a kidney torn in half. And I pictured my little girl just stretched out on the operating bed abdomen exposed, raw, open.
We called anyone who had watched her in the foreseeable past. Everyone racked their brains for the slightest fall, bump, tumble. Nothing. We could think of nothing. Nothing was wrong with our Macie girl. What was going on???
The Urologist came to speak with us. He wasn’t sure, said it may be a cyst – he explained what that meant in very medical terms, but I don’t recall. He said that it would probably be best to take her to Children’s Hospital just to be sure, for a second opinion. I felt reassured.
They stitched her up and we got to see her in recovery. She was yelling and carrying on, demanding her purple princess dress jammies. They of course removed them for the surgery and she was very unhappy about it. A nurse went to track them down. As soon as we got them and draped them over her, she was fine. She clutched her stuffed black kitty and held my hand. She was fine.
It took a long time to get her transferred to the ambulance and on our way. It was a long bumpy ride. There were no sirens or anything – it wasn’t an emergency after all. We arrived close to midnight, it had been such a long day already. They moved her into the Pediatric Intensive Care Unit. All the residents took her history, we answered the same questions over and over again. Yes, full term baby. No, no complications at birth. Yes, healthy as could be until early Wednesday morning. No, no family history of anything…
The next day probably around 4 or 5 in the afternoon, I had stepped out for something and as I came back in the Urologist was in talking to husband and my mom and my sister. When I walked in, he started over and told us that they had determined that she had Wilms Tumor, Cancer of her kidney. He briefly explained that they would take her in for surgery early the next morning to remove the entire kidney and tumor. He said the Oncology team would be by to talk to us soon about treatment. I am sure he reassured us that Wilms Tumor has a good prognosis and all of that – but I was just trying to hold it together. As soon as he walked out of the room, I turned to my husband, collapsed in his arms and wailed, “But I just didn’t think it was Cancer.”
After her surgery, we were in the PICU for two more nights and then moved to the Oncology floor. The treatment phase was about to begin. In the coming days we learned a terrifying amount of information about Cancer and the treatments she was about to endure.
Macie bravely fought through a full week of radiation and nine months of chemotherapy. On top of that she suffered a bowel obstruction from the surgeries several months later and was hospitalized for several more weeks with another surgery to remove the obstruction.
Now ten-years-old, Macie is a happy and healthy fourth grader and is seven years Cancer free!