I'm reposting here for those that aren't members on the Caring Bridge site yet or don't want to be. We encourage you to sign up there though as it is free, they don't bother you, and most of our info will be posted there. http://www.caringbridge.org/visit/danieljmiller
Friday the 13th: Another Very Bad Day:
We're back at Riley again this morning for Daniel's first chemo treatment as an outpatient in what will become our regular Friday routine for awhile. He was very apprehensive about his first "port access" since it's still sore and pretty sensitive. In the end it was a non-issue though and he's doing well.
Andrea and I however are not.
When Daniel was first diagnosed with Leukemia, the doctors thought it was AML, a type that is more difficult to treat and has only a 60% success rate. By that evening however, we were ecstatic to learn that it was in fact ALL which has a much higher 90-95% success rate. The exact details though would be dependent on a final set of lab results that would be a few days. So we've been waiting on those final results all week. They would tell us whether certain genetic markers were present in the cancer cells that would move him from the “High Risk” category to the “Very High Risk”. This would affect the treatment. Well this morning we got the news that he does have these fairly rare markers and is in fact in the “Very High Risk” category. What we were not aware of was that this also significantly reduces the chances of success for his treatment. In fact, it puts us all the way back down to the same level as if he’d had AML to begin with … from 90-95% down to 60%.
The world crashed in around us again this morning as we got this news. The doctor said that the most important next piece of information will come at the end of his first month of treatment when he gets the 2nd bone marrow biopsy. This will tell us how he’s responding to the treatment and give us the best clue as to what to expect from the months to come. No changes to the treatment will even show up until after that.
For right now, we’re obviously in shock and very, VERY upset over this news. We appreciate your continued prayers more than anything else. It doesn’t change anything we’re doing or put him at any higher risk of infection etc. But we’re likely to be all the more cautious about everything at this point. Thank you for your prayers.
At the moment, he’s just finished his spinal tap and in recovery. We’ll be getting something to eat as soon as he’s up to it and then we’ll be waiting to hear the lab results from the spinal fluid. Hopefully, everything remains clear in that regard.
More soon.
We're back at Riley again this morning for Daniel's first chemo treatment as an outpatient in what will become our regular Friday routine for awhile. He was very apprehensive about his first "port access" since it's still sore and pretty sensitive. In the end it was a non-issue though and he's doing well.
Andrea and I however are not.
When Daniel was first diagnosed with Leukemia, the doctors thought it was AML, a type that is more difficult to treat and has only a 60% success rate. By that evening however, we were ecstatic to learn that it was in fact ALL which has a much higher 90-95% success rate. The exact details though would be dependent on a final set of lab results that would be a few days. So we've been waiting on those final results all week. They would tell us whether certain genetic markers were present in the cancer cells that would move him from the “High Risk” category to the “Very High Risk”. This would affect the treatment. Well this morning we got the news that he does have these fairly rare markers and is in fact in the “Very High Risk” category. What we were not aware of was that this also significantly reduces the chances of success for his treatment. In fact, it puts us all the way back down to the same level as if he’d had AML to begin with … from 90-95% down to 60%.
The world crashed in around us again this morning as we got this news. The doctor said that the most important next piece of information will come at the end of his first month of treatment when he gets the 2nd bone marrow biopsy. This will tell us how he’s responding to the treatment and give us the best clue as to what to expect from the months to come. No changes to the treatment will even show up until after that.
For right now, we’re obviously in shock and very, VERY upset over this news. We appreciate your continued prayers more than anything else. It doesn’t change anything we’re doing or put him at any higher risk of infection etc. But we’re likely to be all the more cautious about everything at this point. Thank you for your prayers.
At the moment, he’s just finished his spinal tap and in recovery. We’ll be getting something to eat as soon as he’s up to it and then we’ll be waiting to hear the lab results from the spinal fluid. Hopefully, everything remains clear in that regard.
More soon.
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