In case you didn't know...
I called the doctor on call a couple of nights in June and July because Josiah was complaining of headaches, and he was visibly in pain. Since he always recovered before morning after we assumed they were migraines or from being a little dehydrated.
After talking with neurology we've identified those headaches as the beginnings of a seizure that wasn't yet affecting his muscles. That morning a couple weeks ago he had a headache five minutes before he started shaking.
Since Josiah is already at the top of his dose per kilogram with Keppra Josiah will be having blood tests done (we still have two remaining) to see how quickly the medicine is clearing his body.
As you know, St Jude is a research hospital. One of studies Josiah is involved in is a gene decoding study (PG4KDS). They go through hundreds of different genes and compare them to other St Jude patients and healthy peoples' genes as well. This week we got the results of one gene that controls how Josiah's body metabolizes medicine. He is labeled an "ultra-metabolizer" (only 17%) meaning that for certain medications he will need a higher dose in order for it to be affective.
This news comes at the perfect time as we are not eager to switch Josiah to a stronger anti-seizure medication or add a second medication. All this means that, if necessary, Josiah can tolerate a higher dose of Keppra than other kids his weight!
At this point Dr Kahn has not ordered an EEG nor does he plan to preemptively up Josiah's medication. As long as he doesn't have any headaches, we will stay at the tippy top dosage for his weight and wait and see like always.
Josiah's doing great in all his rehab services! His left eye continues to be weaker than the right so we'll just keep right on patching for a while. We are so proud of how he is growing. He is wise beyond his years on things many adults balk at. More on that later another day.
|Josiah 'reading' to the cameraman all his favorite things :).|
Endocrine appointments are at the end of the month (not worried about his growth:), and the MRI is November 11th. If this scan shows his tumor remains stable there is a good possibility we will go to yearly scans, which is crazy. Mixed feelings there.
Josiah gets to meet some special people at St Jude this Thursday so I'll try to post pictures after then!
Please be on your knees for our friends still fighting: Belle (The Mitchells), Arianna (The Ramirezes), and Sid whose last name I don't know. And those who are off treatment and even free of cancer cells completely still live with many side effects that cause us parents much angst.
Thank you to each of you who are constantly beside us no matter where we go to church or where we work or how often we see you in person. We've seen a lot of changes this summer. Thank you for your tears of joy and sadness poured out on our family's behalf. We love you, and thank God for you.
"Rejoice with those who rejoice, weep with those who weep."
--Romans 12:15 ESV