The History

On June 20th, I noticed some strange bruising on the front of Max's neck. It looked like broken blood vessels. At first we just thought he wasn't getting clean enough, so we made sure to scrub his neck well that night, and it went away. A week or two later, he took a ride in a friend's stroller. The next day, he had similar bruising on the back of his knees. There was a lot more bruising this time, and I was really concerned, but they cleared up really easily again. However, we started noticing that every time he scratched, he bruised. When I took him in for his 3rd birthday appointment, I pointed this out to his doctor and she ordered a CBC (Complete Blood Count). We headed out to Davis Farmlands to play with goats and other animals, run through the water park, etc. I got a call from the pediatrician. His platelet count was very low, which is why he was bruising. His white count was way down, too. We needed to drop everything and go to Mass General Hospital Pediatric Oncology. I have never been so scared in my life.

At MGH, they did a bunch of tests and a bone marrow biopsy over the next two days. They prepped us for a diagnosis of leukemia. We cried a lot. Then, amazingly enough, they came in and said he didn't have leukemia. We could go home. His white count was very low, especially his Absolute Neutrophil Count (ANC) and he was at high risk for bacterial infection, and we were safer at home. We were in a happy daze when we left. We had to keep him away from other children and anyone who was sick, make sure he didn't do anything to cause bleeding, and wait until his bone marrow recovered.

Since then, we have done weekly or biweekly blood tests. Max has done amazingly well with them. His ANC count has pretty much stayed at 400 (anything under 500 is considered dangerous), with one bright moment at 720, before dropping to 300 and then back to 400. His platelet had stayed up over 20,000 for most of the time until 3 weeks ago, when they plunged suddenly. They are at 10,000 now, and he is at high risk for spontaneous bleeding. They did another bone marrow biopsy in early September. THe first one showed 20% cellularity, and the second one, 50%, and we thought he was recovering. However, the recent test results are so poor that they are pretty sure his bone marrow is failing and they just got a good snapshot the last time. He is scheduled for a repeat biopsy on Oct 5th. They are expecting to see aplastic anemia. They have typed Josh, me, and Lauren to see if any of us match his bone marrow. If we do, they will do a transplant. If not, they will probably check to see if they can find another match, but we are not sure about this yet. THere may be a time constraint. There is a series of drugs that sometimes kickstarts the bone marrow as well and is supposed to do very well in children. So, we wait and we hope and we try to keep him healthy.