How we Got Here

This post explains the events leading up to Myla's hospitalization.

Let's start in December of last year. I was about to graduate from Purdue University in West Lafayette, Indiana, with my Ph.D. in Public Affairs and Issues Management. Because family was in town, Melissa and I had wanted to announce her pregnancy at the graduation party. That was going to be the high-point of the whole event. Unfortunately, her pregnancy tests refused to show a line until two days after company left town. Nonetheless, we rejoiced because we knew we would be having a second child. Raul Matthew was born a few days after I started my doctoral coursework, and Myla's pregnancy was confirmed only a few days after my graduation, meaning that our two kids are like "bookends" to my graduate work.

Soon the spring had passed, and with it, weeks of intense morning sickness. When summer finally arrived, it found Raul Matthew in swim lessons, Melissa making nesting preparations for our new baby, and me teaching a couple of classes at Indiana University Kokomo. Melissa's pregnancy kept her at home most of the time, but I tried to keep Raul Matthew busy by taking him to events like the county fair, community parades, the Indianapolis Zoo, and an American Legion baseball tournament. Life seemed fairly normal at this point.

As the pregnancy progressed, we took weekly trips to Melissa's doctor in Kokomo for stress tests, and these tests began to reveal that the baby's heart was skipping a beat about every sixth beat. To be on the safe side, we were sent to a pediatric cardiologist in Indianapolis on July 16 to have Myla's heart analyzed. Thankfully, the heart issue resolved as she developed and we moved forward with the sense that everything was okay. What a relief! This trip to Indy, though, was the first time we had experienced those unsettling feelings regarding Myla's health. But given that the results of the tests were good, we just moved on as normal.

Eleven days later, we found ourselves prematurely in the birthing center at Howard Regional Medical Center as Melissa was having precontractions. She had been experiencing these for a few days, but they escalated to the point where she wanted to be checked out--more for the health of Myla than for her personal comfort. Once admitted to the hospital, Melissa was assigned to a bed and then given two shots of terbutaline. This drug caused her hands to shake for a while. We spent a few hours watching a computer printout that told us Myla's heart rate and measured the strength of Melissa's contractions. With the situation stabilized, Raul Matthew and I walked to the nearby Steak-N-Shake for dinner. (The "shake" irony just dawned on me.) This was the first time that Raul Matthew and I had left Melissa behind at a hospital, and even if it was for only 30-minutes or so, it felt awkward.

On August 9, a Thursday, I took this picture of Melissa. We thought she still had a couple of weeks before the scheduled c-section, but that Saturday found us back in the birthing center with another round of contractions. On the following Monday, we met with Dr. Michelle Haendigis, Melissa's gynecologist, to discuss some of the metrics from the stress test that Melissa had at the hospital on Saturday. Up to this point, her doctor had strongly indicated that she did NOT want to deliver Myla early, so we were quite surprised when the doc announced plans to deliver NOW! The now turned out to be the next morning as that was the soonest surgery slot available, but even with one final night at home, this came as a surprise. So much for taking our time with final preparations. As I recall, we barely slept that night.

At 4:30 AM, we drove through a still darkness to Howard Regional Medical Center in Kokomo only to find that the glass doors to the front entrance were locked. We were off to a good start. :) After going through the emergency room entrance and meandering through deserted hallways under renovation, we arrived at the birthing unit where we were assigned a room. After a family picture, Melissa changed into her surgery gown, and I put on my scrubs. At 7:03, Dr. Haendigis swept into the room to see if we had any last questions before the operation, and four minutes later, Melissa was shuffling down the hall toward the surgery room. I waited in the hallway with Melissa's parents and Raul Matthew until 7:23 when I was invited into the surgery room and told where to sit. Five minutes later, Myla was born.

Now, dump in 2 cups of plot thickener and stir things up "real good."

To this point, there had been only minor concerns over Myla's health. The skipping heart had unskipped itself, and the early delivery meant that the baby wouldn't undergo another two weeks of stress from contractions. As the medical team repaired Melissa, I watched the nurses measure Myla. Strangely, they said nothing as they worked on her. I found that odd. After a few minutes, the nurses invited me over, and it was then that I got a closer look at several prominent spots on Myla's skin. I asked what the spots were, but the nurses were at a loss.

This, was the beginning of the uncertainty.

I thought it was odd that nurses who had delivered hundreds--perhaps even thousands--of babies had no clue what these spots could be. Surely Melissa's doctor would know? Nope. Later that day, neither the dermatologist or the pathologist know what the spots were. Wow.

Back to the delivery room. Just 36 minutes of giving birth, Melissa was then carted to the hospital room where she was able to hold Myla and begin her recovery. A couple hours later, I followed Myla down the hall where she had her blood pressure taken and was given her first bath. I continued to ask about the spots, but like before, nothing was known about them. I was almost more intrigued with the ignorance of the medical staff than I was with the spots themselves. As far as the spots, I couldn't help but think of the episode of Good Eats in which "cousin Ray" tried to sell Alton spoiled and spotted shrimp by declaring, "Them there's leopard shrimp." The medical staff seemed to know nothing about Myla's condition, so I came to an understanding with myself that Myla must be "one of them there leopard babies."

The next day we took a family picture with our new addition. Melissa was the picture of a content mother. As with the day before, doctors checked on her condition, but nothing was know for sure. A biopsy was taken at the request of Dr. Fondak, a dermatologist in Kokomo, and then sent to Dr. Bernie Ackerman in New York City for analysis. According to Dr. Fondak, "Bernie is God." If anyone would know, it would be this guy. Finally, there seemed to be someone who could answer our questions about what these spots were. All we could do is pray and wait for the results.

The spots began to fade as seen in this picture taken when Myla was 5 days old. Meanwhile, we carried on with life as normal with Raul Matthew playing "acorn barnacle" (don't ask) and me learning the ways of the wok. The semester started six days after she was born, and 4 days later, we were in Lafayette for Myla's first doctor appointment. Here's Myla sunning on the 26th to raise her bilirubin count. The next day, we paid a visit to the dermatological office of Dr. Fondak in Kokomo, and here's a picture of us in the parking lot before our meeting. His patients are generally elderly, so we were instructed to whisk Myla into a side room in the office and wait for Dr. Fondak to arrive, which he did shortly thereafter. During our discussion, he gave us the report he had received from Dr. Ackerman.

Here it was--finally.

The diagnosis, while not 100% certain, was leukemia cutis. I looked down at this poorly faxed copy of the report and struggled to process what this meant for Myla, and for us. The diagnosis was heavy, but there was still a ray of hope. More testing would be needed.

We were referred to one of the leading childrens' hospitals in the country for further testing, so on August 28, we arrived at the Riley Hospital for Children in Indianapolis where we headed up to the Hematology/Oncology MSA (Medical Service Area) on the 3rd floor of the Riley Outpatient Center. This was an unsettling experience for us. It was our first time of seeing lots of children with cancer with their bald heads and concentration camp appearances. What were we doing here? Despite the scary environment, I can't say enough about how wonderful the medical staff was to us during our visits, and Larissa and Kris in particular. They took a scary time and made it okay to be there. We were assigned to Dr. Kumar, who was wonderfully and cautiously optimistic about Myla's condition. We decided to continue with the CBC tests for the time being, but if Myla's white blood cells were to rise, then we would need to do a bone marrow test to confirm the presence of leukemia. They might have done this test earlier, but at two months old, the bones are so very small. At three months, it's not much better, but we'd have to do what needed to be done if it came to that.

During one of our visits to Riley, a dermatologist from the hospital came in to have a look at Myla. It didn't take him more than a couple of minutes to look at Myla's spots and conclude that she doesn't have leukemia! Instead, she had something called a "leukenoid reaction" of the skin. These spots would eventually disappear altogether. I wanted to celebrate and end this dreadful period of uncertainly altogether, but I still had a copy of the leukemia diagnosis from Bernie the Divine. I told the dermatologist, "I would love to believe you, really, but I have one major obstacle standing in the way of my optimism: I have this letter from another doctor in which has diagnosed her with leukemia after closely examining her biopsy sample. How am I supposed to interpret her condition in light of this conflicting information?" Like an actor in a TV drama, this doctor folded up the diagnosis and handed it to me while pronouncing: "Send this back to Dr. Ackerman with an invitation to Myla's first birthday party." It was one of those lines you would expect to see as an inset quotation within a Reader's Digest article. I admired the situational acting, and for the first time in a while, I felt the oppressive cloud of uncertainty lift. Myla might be okay after all. Melissa, however, was less inclined to join the party, and as it turned out, she was right.

In the days that followed, I tried to keep things normal for Raul Matthew as we played putt-putt golf, went to state parks, played games, and went to special events like this Civil War reenactment. Myla continued to grow and the spots continued to fade. Here she was at 5 1/2 weeks old.

On October 22, we took Myla back to Riley to have another Complete Blood Count (CBC) test done. Here's a picture of her looking happy in the waiting room, and another of her the following day. There was some cause for concern here as Myla's white blood cell counts had risen above the normal range. Plus, abnormal cells appeared in her blood. Although the spots were disappearing, the rising count and abnormal cells was cause for concern, and we could see it on Dr. Kumar's face. Her optimistic demeanor had largely vanished, and she spoke to us in comforting and concerned tones. We sensed that our lives were about to be turned upside down, but then again, this might just turn out to be nothing at all.

On October 30, we were back at Riley for another blood test. Unfortunately, her white blood cell count remained elevated, and there were also more of the abnormal cells in her blood stream--an indication of leukemia. It was now time for the only reliable test for leukemia--the bone marrow test.

The beginning of this blog picks up the rest of the story.

After writing this, I find myself emotionally exhausted . This entry has forced me to synthesize the events leading to Myla's diagnosis into a meaningful whole, and I guess that was good. To be honest, there were many points along this journey when I made conscious attempts to avoid remembering details. I figured that if her condition turns out to be nothing, then why would I ever want to go back and read the thoughts and feelings I had during this time? :) Anyway, I'm glad I did this, and I hope this fills in some of the missing details on Myla's story.