fuck
- Thread starter iceberg
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And with whom?
wretchedotis
New member
My thoughts and prayers are with you both.
iceberg
New member
Thanks all. My kid is in remission for almost 1.5 years and in about 2 years treatment should end and hopefully that's it. A relapse after complete treatment is still highly curable, I hope it doesn't return in next 2 years.
A drug called methotrexate can cause brain damage called
leucoencephalopathy in about 5% of the patients and my kid got it. That disease is fatal in many circumstances but in case of a cause from this drug it will regress or stay the same. My kid had symptoms only once and they were similar to stroke and hallucinating. That was when crazy ex said it was black magic. The kiddo is still on that drug but every 3 month unlike every months before that because we reached maintenance phase. I keep asking for another MRI to see if it has change and they refuse to do 1 unless there is symptoms. There are 5 stages, stage 5 is fatality or severe morbidity and my kid was stage 2 exactly a year ago.
And recently they found 2 blood clots in jugular and subclavian veins caused by an implanted device (ivad) and now I have to stab the kid with needles 2x a day to inject bloodthiners. Doctors told me the kid will be OK.
I freaked out when I read that "upper extreme deep vein thrombosis" is usually fatal. Every website said something similar so today I called the clot physician and she assured me that even if the clots remain there completely blocked, the blood will still flow through peripheral veins and said chances of survival chances for this condition is 99.9% except there is some 20% chance for some morbidity. The fatality rates I read are for adults especially seniors according to her. She said she treats 100-300 kids a year with this condition and only 1 fatality happened 10 years ago.
My fear and stress is still high.
A drug called methotrexate can cause brain damage called
leucoencephalopathy in about 5% of the patients and my kid got it. That disease is fatal in many circumstances but in case of a cause from this drug it will regress or stay the same. My kid had symptoms only once and they were similar to stroke and hallucinating. That was when crazy ex said it was black magic. The kiddo is still on that drug but every 3 month unlike every months before that because we reached maintenance phase. I keep asking for another MRI to see if it has change and they refuse to do 1 unless there is symptoms. There are 5 stages, stage 5 is fatality or severe morbidity and my kid was stage 2 exactly a year ago.
And recently they found 2 blood clots in jugular and subclavian veins caused by an implanted device (ivad) and now I have to stab the kid with needles 2x a day to inject bloodthiners. Doctors told me the kid will be OK.
I freaked out when I read that "upper extreme deep vein thrombosis" is usually fatal. Every website said something similar so today I called the clot physician and she assured me that even if the clots remain there completely blocked, the blood will still flow through peripheral veins and said chances of survival chances for this condition is 99.9% except there is some 20% chance for some morbidity. The fatality rates I read are for adults especially seniors according to her. She said she treats 100-300 kids a year with this condition and only 1 fatality happened 10 years ago.
My fear and stress is still high.
iceberg
New member
Thank you both. I did find a medical site that states kids, unlike adults have much better prognosis. If the clot clears up the children's life span is 6-9 decades, and if it doesn't, it says that prognosis are still good. They don't give a percentage if the clot remains but say overall in all the kids with this condition survival rate is around 80%. I think I should quit reading internet and go with what the doctor says.
Every staff member said chances for survival are 99%+...I mean why would they lie...they could say we don't know or something...
They did say chances for clearing up the clot are 50-50
Thanks again for support Arabian, Oink, WO and dinkyface.
Every staff member said chances for survival are 99%+...I mean why would they lie...they could say we don't know or something...
They did say chances for clearing up the clot are 50-50
Thanks again for support Arabian, Oink, WO and dinkyface.
smileandwalkaway
New member
Yes, try to stop the web medical searching. It sounds as if you have enough advice from various sources that all say the same thing.
Save this extra energy for being a loving daddy to your child... This is were I believe time most well spent will be for both the kid and your peace of mind.
Save this extra energy for being a loving daddy to your child... This is were I believe time most well spent will be for both the kid and your peace of mind.
DowntroddenDad
New member
All the best, I know these things are difficult, be good to your child and to yourself as well. Will pray for both of you.
Tayken
Well-known member
Based on this medication profile your have shared for the child in question I am assuming that the child was diagnosed with acute lymphoblastic leukemia.
leucoencephalopathy is a broad description of brain white matter diseases. I am going to assume that you are talking about toxic leukoencephalopathy as it developed after administering methotrexate for the possible treatment of actue lymphoblastic leukemia.
You stated it "is fatal". Don't think of it from that perspective as it is not absolute that the development "is fatal". There are treatment plans as well, unlike the other way of contracting it, the medication dosage for which your child has been given and frequency is well known and part of her plan of care. The treating clinicians will start a regimen to reduce the toxicity I suspect.
Again, the confirmation requires an MRI and study of white matter from what I understand. I really recommend you talk to the clinician about the onset and if it has developed probably. You stated it has only happened once and I would check but generally a single occurrence does not classify "diagnosis" in these complex matters.
This is because toxic leucoencephalopathy may require more than a single occurance to determine. There are a lot of other health care conditions that can represent the symptoms you have described. Just because your child is being adiminstered methotrexate does not mean it is generally toxic leucoencephalopathy. Don't let the internet get you too anxious.
Always talk to the medical professional whom is responsible for the care of your child for a proper understanding of your child's medical condition. Relying upon information from the internet is not advised.
I am confused. Is this stage 2 of acute lymphoblastic leukemia or toxic leukoencephalopathy?
If you are talking about the toxic leukoencephalopathy my understanding is that it needs diagnostic imaging (MRI) to support a diagnosis. But, earlier you were stating that they don't want to do an MRI. Did a medical professional diagnose the toxic leukoencephalopathy in your child? Or is this a concern you have based on information you read on the internet based on a subjective symptoms list somewhere?
Clotting is a risk that comes with iVADs and are not related to the medication I suspect. Is this correct?
You need to trust the doctors. My assumption is that the child in question based on your previous posts is being treated at Princess Margret Hospital. They are the second best cancer treatment facility in the world. Trust me, your child is in very good hands with the clinicians there.
Stop reading and start talking to the doctors. There is way too much complex medical information on the internet that causes unnecessary anxiety. Talk to the clinicians providing care... Less internet surfing.
Re-read what you wrote to better understand how you are making yourself anxious about the situation. You stated that the doctor stated the survival rate (chances) as 99% and then stated the mobility rate of 20%.
99 + 22 = 121%
If you believe what the doctor told you the morbility rate is 1% not 20%.
TRUST THE DOCTOR. Stop reading the internet! Re-read what you wrote again. You are reading ratings for "adults especially seniors". You have to be very cautious of how you interpret evidence based medicine. The studies you are reading are not meant for "general consumption" of people who are not trained medical professionals.
I would trust the doctors assertions.
Realize this about yourself and seek help for the stress and fear (fear="anxiety" by the way). You are making yourself more anxious with the reading you are doing on the internet possibly. You then are taking your concerns to the clinicians and consuming their time validating improper studies and other information that you are reading on the internet.
You need to establish a model of trust with the clinicians providing care to your child. I suspect the child is being treated at Princess Margaret and I again encourage you to really find comfort in the fact that your child is being treated at the 2nd best damn cancer treatment facility on this earth and has the best researchers and treating clinicians. There really isn't a huge different between the #1 and #2 slots in this category.
If your child's diagnosis is acute lymphoblastic leukemia then trust me... Your child is in the very best place on this planet to be treated and you can trust the doctors there. You won't find better for treating acute lymphoblastic leukemia in a child.
Find comfort in the fact that you are lucky enough to live in a city (Toronto) or in close proximity to it, where your child is receiving the best care possible. Even a "private" hospital in the United States doesn't compare or come close to the treatment your child is getting at Princess Margaret.
Good Luck!
Tayken
Good Luck!
Tayken
iceberg
New member
Thanks again everybody for your support, wishes and prayers. It means a lot in this difficult time.
FB: Custody is not an issue in situations like this. If I could choose kid's health over custody I would choose my kid to be healthy no matter who has custody. But I can't choose nothing, I can only fight for kid's health, pray and hope. I won't talk about my ex but nothing has changed (for good).
Tayken: You're right. It is Acute lymphoblastic Leukemia, medium risk. (vs low and high) You are also correct that the leucoencephalopathy is toxic type, caused (most likely) by MTX. But see, they told me all about it even wrote a letter of diagnosis for relevant purposes but somehow failed to use the word "toxic". I learned it from you. And yes, after they found out the child has been diagnosed, they delayed 1 treatment to see if it will improve, be stable or progress. After 2 months another MRI was done and it showed no changes so they continued with the drug. "BTW, when I said I have been asking for an MRI, I meant for 1 more MRI because the last one was done in December 2012 and the child is still on MTX, although every 12 weeks unlike every 4 in the past"
They told me that leukoencephalopathy is at stage 2. They said there are 5 stages and one of the reason I keep asking for another MRI is, the illness can progress and yet become asymptomatic. They say they never do another MRI unless there is symptoms.
I must say we were lucky that it did not progress because if it did then methotrexate would have been discontinued and the possibility of leukemia relapse would be extremely high. There is no other drug at this time that works as well as MTX. They hope it will remain same or get back to normal, eventually.
Your right that IVAD caused thrombosis. They first told me it is 1.5 cm long but today said it occupied entire left jugular vein including subclavian vein and little bit of right subclavian vein too but that one is likely to disappear because it is small and not fully clotted. The left side is 4-5 inches long, fully blocked with minimum chance to be gone. The goal is to stop it from growing and having it (or peace of it going to brain, lungs or heart. Most often goes to lungs and causes pulmonary asbestosis.
The doctor said chances of not dying from it is 99.9%. She said that morbidity chances (not mortality) are around 20%. If I wrote mortality I meant morbidity and if I am correct morbidity means serious illness like for example stroke?????? She said swelling of the arm (s) and head may be happening down the road.
In another post on this thread I wrote that I read online that survival rate for children is 80% overall.
I live in Alberta so the hospital we have is pretty good but from what I have read about other hospitals (including the one in Toronto) ours has a lot room for improvement.
You bet I won't read on prognosis any more. It does no good. Leucoencephalopathy seems to have only 2% chance to develop in leukemia treated patients by MTX and my kid is 1 of those 2%. I listened to a radio show when someone called in with diagnosis and asked for prognosis and the host (Dr.) said "your chances for cure are either zero or 100%". He said that because every person is different.
I hope my kid will be OK. According to docs, next 3 months high dose of blood-thinners and close monitoring, then if the clot becomes firm, lower dose for the next 2 years (until ivad is out).
Thanks
FB: Custody is not an issue in situations like this. If I could choose kid's health over custody I would choose my kid to be healthy no matter who has custody. But I can't choose nothing, I can only fight for kid's health, pray and hope. I won't talk about my ex but nothing has changed (for good).
Tayken: You're right. It is Acute lymphoblastic Leukemia, medium risk. (vs low and high) You are also correct that the leucoencephalopathy is toxic type, caused (most likely) by MTX. But see, they told me all about it even wrote a letter of diagnosis for relevant purposes but somehow failed to use the word "toxic". I learned it from you. And yes, after they found out the child has been diagnosed, they delayed 1 treatment to see if it will improve, be stable or progress. After 2 months another MRI was done and it showed no changes so they continued with the drug. "BTW, when I said I have been asking for an MRI, I meant for 1 more MRI because the last one was done in December 2012 and the child is still on MTX, although every 12 weeks unlike every 4 in the past"
They told me that leukoencephalopathy is at stage 2. They said there are 5 stages and one of the reason I keep asking for another MRI is, the illness can progress and yet become asymptomatic. They say they never do another MRI unless there is symptoms.
I must say we were lucky that it did not progress because if it did then methotrexate would have been discontinued and the possibility of leukemia relapse would be extremely high. There is no other drug at this time that works as well as MTX. They hope it will remain same or get back to normal, eventually.
Your right that IVAD caused thrombosis. They first told me it is 1.5 cm long but today said it occupied entire left jugular vein including subclavian vein and little bit of right subclavian vein too but that one is likely to disappear because it is small and not fully clotted. The left side is 4-5 inches long, fully blocked with minimum chance to be gone. The goal is to stop it from growing and having it (or peace of it going to brain, lungs or heart. Most often goes to lungs and causes pulmonary asbestosis.
The doctor said chances of not dying from it is 99.9%. She said that morbidity chances (not mortality) are around 20%. If I wrote mortality I meant morbidity and if I am correct morbidity means serious illness like for example stroke?????? She said swelling of the arm (s) and head may be happening down the road.
In another post on this thread I wrote that I read online that survival rate for children is 80% overall.
I live in Alberta so the hospital we have is pretty good but from what I have read about other hospitals (including the one in Toronto) ours has a lot room for improvement.
You bet I won't read on prognosis any more. It does no good. Leucoencephalopathy seems to have only 2% chance to develop in leukemia treated patients by MTX and my kid is 1 of those 2%. I listened to a radio show when someone called in with diagnosis and asked for prognosis and the host (Dr.) said "your chances for cure are either zero or 100%". He said that because every person is different.
I hope my kid will be OK. According to docs, next 3 months high dose of blood-thinners and close monitoring, then if the clot becomes firm, lower dose for the next 2 years (until ivad is out).
Thanks
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