Today Kevin has his Spinal MRI to see if there are any tumors on his spine. He will be put to sleep for the test because it takes 2 hours. Please pray that the test results are clear for the doctors to read and that they are negative for more cancer growth. Kevin’s lumbar puncture was suppose to be on Friday but I luckily learned on Thursday that they were hoping for an opening at 9:30am this past Friday, there wasn’t really actually an appointment. So it is now set for Tuesday. Hopefully this one is for real.
I am trying to pull Kevin’s medical records from CHM to get a couple of second opinions because as I like to say, its not like Kevin just has the flu. But for some odd reason CHM has not updated his file at all since Feb. 4th. So his last CT scan is missing, there is no operative report for his operation on Thursday Feb. 7th. Which is odd, because when I went to pull his records on Feb. 4th I was able to get his operation reports and everything else. I can see difficulty ahead.
I was really concerned and quite honestly upset with our pediatrician when Kevin was first admitted to the hospital. I felt that they weren’t interested in handling Kevin as a patient. I really felt that they had abandoned me to navigate all of this medical crisis alone. But the doctor who owns the practice has really recently step up and given me the most reassurance that it will be me, not any doctor, who will know what is best for my son. I really appreciate the Saturday afternoon phone calls she made to help me try to get Kevin’s records and talk about getting second opinions.
A couple of moms, from around the country, who’s children were also diagnosed with medullo have contacted me and are helping me understand the different treatment options and filling me in with their experience (and also a local friend who attended Medical school - thank you Abi!). It is helping me emotional get a grip and keep things moving forward for Kevin. As I have learned the hard way no one else will be a better advocate for Kevin but his own parents, and moms are good at becoming experts when their childs life is at stake. The more educated we are the better decisions we can make. Radiation is the scary thing because it can reduce a childs IQ as much as 25% but it is the only thing proven so far to kill off the cancer for good. If this cancer that has invaded Kevin’s body comes back, from what I understand, it will most certainly be lethal. Right now, hopefully we have a chance of saving him.