Then one day we noticed what looked like a purplish and red raised rash on his back while we were bathing him. I thought it was skin irritation and the next day it seemed a bit better: a lot less intense in color and only slightly raised. Then his next bath, we saw that it was worse and not at all better. So, after freaking out a bit, I looked up rashes, because the thing looked more like a rash than anything else. It did not meet the criteria for an ER visit according to the websites and so we made a doctors appointment. It was nearly a week away, but that was as soon as his pediatrician would see him. There was nothing to do but wait and fret.

I should back up a bit. When he was quite small we asked about his many cafe au lait spots at a well baby visit as were told they mean nothing. We took him in at four months because he was stronger on one side than the other. We were told that it was likely from him prefering to nurse on one side, and no further tests were needed that he would grow out of it soon. No follow up was needed.

Well, the pediatrician took a look at the lump and jumped back and said, "EEUUuuuchhh!" She then began interrogating us about his care. She stated that she thought this was directly due to trauma and grew very cold toward us refusing to consider or discuss any other possible causes and did not suggest any treatment. She called her nurse in and had her take pictures. She advised us to get an ultrasound and an x-ray. My understanding is that she thought the raised purple spot was from us beating David and the discoloration and swelling were due to bruising. I was horrified at the accusation and horrified that it might sidetrack treatment.

We did our best to make her understand that he had not been through any "trauma," that no one had beaten him, nor had he fallen, and that the diagnosis did not make sense because the spot had not changed in appearance for over a week; if it were due to a trauma that we had not noticed or were lying about, the appearance would have changed since making the appointment. In my experience bruises change color. We did get her to alter her diagnosis from "trauma" to "mass." While it raised ugly possibilities, it was far more accurate than trauma, and would, I hoped, bring the right kind of attention to him.

It struck me later that had she believed that it was a bruise, she should have done a complete blood count(CBC). Unexplained bruising was the first symptom of the leukemia that killed my grandfather. Not only did she misidentify the mass as a hematoma, she failed to prescribe tests that would be prudent for any unexplained hematoma.

So, we took him to get an ultrasound. I think it was that day, possibly the next. David was cheerful and liked the tech. He cooperated and the tech quickly confirmed the mass was visible on the ultrasound. To my horror, the mass penetrated the muscle wall and went far into him. She called in a pediatric radiologist. The radiologist imaged the mass for a long time but was unable to determine the depth or extent of the mass. Then we had him x-rayed. She said we should see a surgeon. She gave us a possible diagnosis of hemangioma, but said that it would require further imaging to determine what it is.

At that point I felt numb and was not thinking clearly at all or I would have asked for a referral. I did try to get a referral to a surgeon from his pediatrician, but she refused to so much as name a name until she reviewed the final radiologist report and saw him again in the office. We called the radiologist and she referred us to a pediatric surgeon, saving up several days, for which I am grateful. We then got an appointment very quickly with the surgeon. The surgeon prescribed an mri and suggested we get an appointment with a neurosurgeon as the mass was near the spine.

After she had examined him and told us she wanted us to get an MRI, I asked if the mass looked to her like it could possibly be due to trauma. She said that was not something she had suspected, nor had the radiologist. It did not look to her like a bruise, and there were no signs of trauma that she could she, and none had been reported by the radiologist. She seemed baffled that anyone would have suspected that given the appearance of the mass.

The mri was scheduled and rescheduled and finally took place the day after Christmas. The results were not conclusive, but it does look like the mass is not a hemangioma. The appointment with the neurosurgeon is for January 9th. As a result of the inconclusive MRI, the surgeon suggested that we check David into the hospital Friday, December 28th to get a CAT and other tests and see a variety of doctors.

We did. The admitting doctor was an oncologist. He was a trooper. Even though he had been stuck multiple times, he was calm and happy for the CAT scan and did not need any sedation, and so we got to go home that night. We were there first thing in the morning, and by 10:30 pm he had been stuck by needles 12 times, had blood and urine tests, and a CAT scan and were allowed to leave.

While we were there, he was seen by a geneticist. On the basis of his nearly 20 cafe au lait spots and three freckles he has been diagnosed with neurofibromatosis-1. The mass has still not been fully identified, but the leading contenders are plexiform neurofibroma, neuroblastoma, or malignant peripheral nerve sheath tumor (MPNST). The only results I have from the tests is that the CBC was normal, so it looks like he does not have leukemia.

On top of all of this, I go into have a lump removed from my breast on January 24. They will sent it to pathology to determine if follow up treatment is needed.