Trey’s second IT Elaprase dose, of 30mg, is complete. He received it this afternoon via lumbar puncture under general anesthetic. Long story as short as possible, a doctor accesses Trey’s central nervous system (either by lumbar puncture or by intrathecal device) and draw off CSF (cerebrospinal fluid). They send the fluid to the lab and run a number of tests, but the only one that matters for dosing, is the white count. Trey’s white count was under one, which is great. Under 5 is normal, over 30 and you don’t get your dose, over 100 and you’re out of the trial (it’s how they determine if a device is failing or if a child may be having a reaction). So, one the lab results came back, Trey got his dose. Everything went well.
There is so much going on with this trial, things are changing daily. Even being down here 2 monthes ago, which seems relatively recent, I still had two pages of questions for Dr. Muenzer. And then, after being here for two days, all sorts of new information comes up. About the device: new breakages, new fluid accumulation, new leakage, new removals, a potential new device. About the drug: potential reactions, some IQ’s increasing dozens of points after receiving intrathecal drug, some stabilizing, hydrocephalus being resolved… the list goes on and on. I have had hours and hours and hours of conversation over the past two days with parents of kids in the trial, doctors and nurses involved with the trial. My mind is in a haze. High. Low. Fear. Elation. But above all, gratitude and appreciation. To have this chance. Enzyme is floating around in Trey’s brain. Indescribable.
Right now, Trey is in hospital and will be until Friday. Before we come back home we will see the neurosurgeon and talk about new device placement. We will also get projected dates for dosing over the next six monthes, end of study testing dates (the study is only 6 monthes long, and because Trey missed his second dose in November, he will have his end of study tests after 6 monthes of the trial, but only 5 doses. However, after the six monthes, Trey does not stop drug, he will roll right into the extension study), and probably, new port placement dates.
In addition, we have an appointment with Trey’s hand surgeon on December 21 to discuss a bilateral carpal tunnel release, so we will be preparing for that in the new year as well. I am sure glad I don’t have anything else on my plate because this right now is a full time job!
Thank you everyone for all that you are doing. To our babysitters in North Vancouver, to Jamie for making us feel at home in NC, to Christopher for visiting, to Liz for creating the beautiful header for this website, to all our family and friends who have remembered, hugged us, given us your positive thoughts. You have made it a less lonely road.
Love love love,
Deb
