Diagnosis

 

Many people have expressed interest in how Spencer was diagnosed with leukemia. We believe many mistakes were made just prior to diagnosis and that this has possibly caused additional problems for us and Spencer. There's no way to know this for sure but this is what happened:

The process of diagnosis took about two weeks and it began about the third week of August, 2003 when Gramma Kristie noticed a couple small lumps on Spencer's neck. It was fairly clear that these could be slightly swollen lymph nodes so we had Spencer at our pediatrician's office the next day. Our pediatrician took a look at them and was concerned, but not overly so. He said any number of things could cause this and the typical course of action is to first try one type of antibiotic. If that didn't work we'd try another type of antibiotic. And if that didn't work we'd do a biopsy. This suggested a process that could take 3 weeks.

Seemed reasonable so we left with a prescription for antibiotics. After about 4-5 days the lumps continued to grow quickly and it was obvious that things weren't working so we went back in. By this time Spencer was also showing serious signs of congestion in his breathing, particularly at night. Less than a week had elapsed but this time they took a blood draw for a cbc. When it was analyzed by the lab at French Hospital the results came back as "inconclusive". Apparently no blasts were seen in the blood. Also, the breathing was blamed on swollen adnoids, even though a visual inspection showed now swelling. This is where a huge mistake was made. They did no further investigation and essentially left us to see what happens.

I'll momentarily jump forward a couple months now. Confused about how they could have missed this we called French Hospital to get a copy of the lab results that were taken in late August. The results alarmed us and we will be mad about this for the rest of our lives. Spencer's white blood count was 27,500 and his platelets were 80. While this in itself doesn't suggest leukemia, it does suggest immediate further investigation. Couple that with some of Spencer's symptoms like unexplained nose bleeding and bruises, and labored breathing, and you need to do more, now. Bottom line is both the hospital and the pediatrician's office blew it big-time. A simple chest x-ray would have caught it.

Jump back to August. I believe this was Thursday or Friday before Labor Day Weekend - a three day holiday of course. I left for Mexico for a long-plannned filming trip, having to pick up both Sean Aiken and Nathan Mershon at the San Diego airport. It's unfortunate this trip was scheduled right then but we still got no indication of concern from our pediatrician. Leukemia was still not on the radar. Through all this Spencer was still energetic, had a good appetite, complained of nothing, and was sleeping well. Throughout the three-day weekend Spencer's health deteriorated. Kerri was pretty concerned on Saturday night. We discussed taking him to the emergency room if Kerri felt it was necessary. That was easy for me to say from San Diego, but we were still confident it wasn't anything that serious and we'd take care of it on Tuesday.

On Sunday Kerri became very concerned and started trying to get ahold of the pediatrician's office. Of course Monday was a huge holiday so it was very difficult. On Monday night she finally got ahold of him and he said to meet him first thing in the morning on Tuesday. He instantly diagnosed him as a very sick kiddo and they went directly to Sierra Vista for a chest X-ray, at which time it was a no-brainer. In fact, he had to be med-evaced to Stanford, where his white count at diagnosis was 230,000. Just as important, his blood chemistry was so messed up that they couldn't start chemo for another 24-36 hours. By the time they started chemo his white count was 400,000.

So, this should have been caught much earlier. The pediatrician's office is mostly to blame, but the hospital as well. Beyond that if it hadn't been a 3-day weekend we'd have gotten it a couple days earlier. If we had gone to the ER we could have gotten at least another day on it. We are fairly certain that if it had taken as little as another 24 hours Spencer wouldn't have made it long enough to start chemo. As it was Dr. Link said he was very nervous and that it was touch-and-go for the first few days. Fortunately Spencer responded amazingly well. Our friend by unfortunate circmustance, Zack Bray from Paso Robles, was diagnosed on the same day with the same thing (the odds of that are impossibly low) with nothing more than night sweats. Another kid we heard about recently was diagnosed with about a 25,000 white count just from neck pain. So, we fell through the cracks and it's no small thing.

That said, it can be argued that the stage of the disease at diagnosis is not as important as it once was. Spencer responded right away and went into remission faster than anyone expected. However, presenting white count at diagnosis is a big prognostic factor for oncologists. Please see the Relapse page for the reasons for this. The latest results for T-cell show amazing success for high white count patients, sometimes doing as well or better than lower risk patients. But that is not the whole story. High white count immediately puts you in a much higher risk category and treatment can be different. But because of the aggressive nature of T-cell as opposed to B-cell, most oncologists now consider all T-cell patients to be high-risk. Spencer was CNS negative at diagnosis but with such a high white count it makes you nervous. In light of his early CNS relapse we wonder if we undertreated his CNS, but that's not our call. All literature categorizes patients based on presenting white count. For T-cell Spencer has nearly every prognosticating factor in his favor - his age, sex, rate of response, everything except for white count at diagnosis and that has been our Achilles heel ever since. We should have caught it sooner. It's impossible to tell if we are heading to transplant because of it, but we should have caught it sooner.