Venting...

The BBQ Pit
61

I just got off the phone with my ex. The doctor in charge of my son’s treatment has evaluated yesterday’s MRI, and was immediately ably to tell that there have been changes to the white matter in his frontal lobe. The doctor considers the concern for this to be severe, and has given us an urgent recommendation to a pediatric neurological oncologist at Emery, and will likely be moved up there tomorrow. This is, alas, the worse case scenario situation, and will significantly alter his treatment path.

The condition is called toxic leukoencephalopathy or toxic spongiform leukoencephalopathy and is characterized by progressive damage (-pathy), of the white matter (leuko-) of the brain (-encephalo-) due to ingested toxins (toxic).

Toxic leukoencephalopathy has also been reported as a consequence of cranial irradiation and chemotherapy in the treatment of leukemias, such as acute lymphoblastic leukemia, which is what my son has.

Toxic leukoencephalopathy affects white matter tracts devoted to higher cerebral function, causing clinical features that range from inattention, forgetfulness, and changes in personality to dementia, coma, and death.

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My ex’s husband just updated Riley’s CaringBridge site, and make the situation sound a lot less severe than I was initially told on the phone. I spoke to her on the phone, and she wants to keep panic levels down - at this point, we really don’t know what we’re looking at, and won’t until the neurologist, who is going to see him next week, has a chance to evaluate things. I do want to note that, when I talked to her this afternoon, she made it sound a lot scarier…and it has the potential to BE a lot scarier…but I am admittedly on edge, with SO much stress right now. I’m sorry if I caused any premature heart racing. We’ll let you know as soon as we hear more.

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OMG, Woeg.

I am so sorry. I hope this turns out to be merely a false alarm for your poor little boy.

:frowning:

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I’m sorry you are dealing with all of this, Woeg. You and your family are in my thoughts.

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I want to reiterate the suggestion of looking for a friend or family member willing to co-sign the lease. Don’t be to proud to ask for help. You deserve it.