Yay! <3 Keep on fighting the germies. 
I just found this thread. I’m so sorry for Riley. When I had chemo ,the children’s ward was close by and it was so hard to see those poor, brave, bald kids.
I found that drinking carbonated drinks helped the nausea. Sometimes a belch would be enough to stop the nausea for some time. A bit of hard bread (knäckebröd) in the stomach, even when I didn’t feel like anything would stay down, helped too.
All,
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.
Shit. What’s the upshot of this, Woeg - they’re going to need to find a different way to treat Riley so the inflammation doesn’t get worse, right? Do you know what the alternative treatments might be?
At the moment, I don’t know what the upshot is. I know that they will have to change his treatment roadmap - unfortunate, because the one he is on is considered the most successful, but I don’t really know at this point how much of a difference it will make, since we are right at the beginning of the maintenance phase. We won’t know what path to take, though, until they get him to Emery and the PNO evaluates him.
I’m very sorry about the complications and I hope they have a good alternative that can consolidate Riley’s progress.
I hope the doc at Emory will have better news for you tomorrow.
I’m so sorry to hear this news. Hoping for good news soon.
Luck to the kid.
Wishing you and Riley strength and all the best.
My ex’s husband just updated Riley’s CaringBridge site, and makes 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.
Oh dear. I hope what you were told earlier is “just” the ‘worst case, when we see this sort of thing mayyyyybe one in a thousand kids has x complication’… I cannot begin to imagine the stress levels you must be under right now.
I hope I’m not being a pest, but…any news?
I’m not sure how I managed to miss this thread for so long, but I want to throw my support behind little Riley and wish your family the best.
My thoughts are with you and your family, Woeg. Wishing you all strength and good luck.
Hey all, no real news at the moment, but I should have some by the end of the day. Riley is up at Emery now, waiting for the pediatric neurological oncologist - I am not sure what they will be doing today, whether it is just going over the existing MRI’s or doing new tests - but as soon as I have an update, y’all will as well.
For those interested, Riley will be featured in a calender for a local chilldhood cancer charity - here’s a link to the pics they took!
Riley is beautiful (tell him I mean that in the way boys are beautiful)! I like the fifth shot a lot.
Keeping good thoughts for Riley and his family!
Excessively good news today! Riley just got done with his appointment with the pediatric neurological oncologist at Emery, and she had the following things to say:
First, she said that, having looked at his MRI extensively and having spoken with him alone during her interview, she thinks he is an exceptionally bright child, much more cognitive than most children his age, which I must admit, makes me proud!
Second, the tremors he has been experiencing are not caused by the chemo - they are likely caused by a minor brain defect, that is quite possibly inherited (my biological father has bad tremors), and would have eventually surfaced on their own…the chemo just brought them to light a bit sooner. She does not think they are bad enough to cause alarm, and has prescribed occupational therapy should they worsen as he continues treatment.
Third, the MRI shows NO brain damage - what his normal doctor thought might be damage to the brain is instead damage to the fatty insulation tissue (called the Milan) that surrounds the brain and its cables. This is not unusual for chemo patients, the damage she sees is moderate at worst, is entirely reversible, and is not the cause of his tremors or a major cause for concern.
Last, her recommendation is for him to continue on his treatment path without change - meaning that he will stay on the treatment plan with the highest possible rate of successful treatment!
Glorious news indeed - thank you all for your thoughts, prayers, and well wishes!
Thank you, I couldn’t be gladder to hear this.