It gets worse before it gets better

The bone scan happened yesterday. I could tell just by looking at the computer screen during the scan that it wasn't good news.

The reading came back today and unfortunately the bone lesions have spread to multiple spots. The left leg has done some healing but still shows damage. However, his right leg is now much worse than his left leg ever was. The accompanying x-ray shows that part of his bone in the right leg has been eaten away. It may or may not be long term damage - that has yet to be determined. He still shows the lesions on his ribs and new lesions on his upper right arm and one infected vertebra.

If you remember, Hunter had a "mass of leukemia cells" in his left leg and two ribs. I use the quotation marks due to the fact that we still don't know what the lesions were or are. They did a bone biopsy on his left leg but still no bacteria has grown nor have they been able to determine if it was a mass of Leukemic cells or osteomyelytis (a bone disease). So if the chemo is working and the Leukemia is subsiding - then the idea that this "mass" was leukemic cells is less likely. The only known explanation is a very rare bone infection called multi-focal osteomyelytis.

However, the infectious disease doctor came in today and he seems perplexed. He doesn't see this kind of multi-focal (multiple locations) osteomyelytis in children his age nor in AML patients. He decided to not comment further until after the MRI of his right leg that will hopefully be done today. He also mentioned he is contacting specialists around the World for anyone that has seen a case of multi-focal osteomyelytis in an AML infant.

At least the oncologist is hopeful that we are making some progress towards a better understanding of the situation. However, when it comes down to brass tax - he is just as unable to make a confident diagnosis. He also mentioned he is consulting with a renowned children's AML doctor in Oakland for his input.

The osteopath still needs to put in his two cents. I'm afraid he will be just as confused as all the rest.

Ultimately, we are dealing with a very unique case of disease. None of the doctors have seen anything like this before and they are actively looking for answers.

Hunter is destined for the record books.