First Treatment

Friday morning we woke at 5:00am to start our first, of many, trips to Lansing for Luke's treatment.  Our appointment was at 8:00am but we needed to get there early in order to complete the admission paperwork, etc.  We really didn't know what to expect with this first treatment, how the day would transpire, or how Luke would respond to the medicine (Myozyme).  We did a lot of hand holding during the trip and Luke was a great passenger for being so early in the morning. 


The children's outpatient center was pretty easy to find (with the help of some nurses) and we were shown to our "area" right away.  The area we were in was pretty open to other patients and was more like a triage unit than individual rooms.  We were a little concerned about spending our day comforting Luke in this open environment.  Our "room" had a TV mounted on the wall and was set up with 2 recliner loungers.  They also brought in a crib for Luke which looked more like a cage (there was no way he was sleeping in that thing). 


At about 9:00am they put in the dreaded IV line.  They took us into an exam room (with a door) to put in the IV.  They put it in the back of his little hand and he really didn't appreciate it.  They also had to take some blood in order to establish some baseline numbers in order to measure how the Myozyme is impacting his health down the road.  The nurses had a hard time getting enough blood out of the IV.  Finally, they hooked him up and bandaged his hand so he wouldn't pull the line out.  We returned to the room afterwards and they had to call the lab to come up and extract more blood to complete the testing they had to send out.


We waited about an hour before the lab tech came up to draw more blood.  They took us back to the exam room and took enough blood from his other arm (which he really didn't appreciate).  Luke has been poked and prodded so much in his early life that he knows what these nurses want when he sees the needle and tubes.  The lab tech was pretty good - we sure have had some bad ones!


At about 10:30am, the pharmacist arrived with the Myozyme.  They physically have to walk the drug to the location where it is administered because it is so costly.  It's actually kind of unbelievable.  As is the administration of the treatment.  They have to have a nurse solely dedicated to Luke's treatment for the day.  We overheard her (Amy) say several times that she couldn't leave her assignment.


At 10:45am they started administering the Myozyme.  All they do is access the IV line with a second line from the Myozyme bag.  Because of the significant risk of side effects, they have to administer the Myozyme very slowly at first and then increase the dosage if the patient doesn't demonstrate any side effects.  Luke had all kinds of lines running from his little body so they could monitor his vital signs.  Amy monitored Luke very closely over the next 4 hours.  Every 20 minutes or so she took his temperature and blood pressure. 


And so that's what we did for the next 4 hours.  Luke was a trooper given the circumstances.  He couldn't move very much without pulling on one line or another and his attention span was pretty much limited to 10 minutes or so per activity.  Thank goodness we brought books, movies, toys, etc. because we used them all.  I actually climbed inside Luke's crib (cage) for about an hour.  Dr. Amalfitano actually showed up around 12:30 while I was in with Luke.  Dr. Amalfintano dropped by on his lunch hour to check on Luke and see how the treatment was going.  He didn't have a lot to say but he answered some of our questions.  One thing we learned was that the first couple of treatments actually go pretty well.  It is the 3rd-6th treatments that sometimes present some of these side-effects that we've been worried about.  He reiterated to us that he thinks Luke will accept the Myozyme favorably based on the fact that he makes 8% Acid Maltase on his own. 


After the Doctor left, Rod ran to the car to get Luke's pack-n-play and we set it up in the room.  Luke laid right down and immediately went to sleep.  Luke slept for about an hour and a half which allowed Rod and I to eat lunch and have a nice talk.  This journey with Luke has brought us so close and has strengthened our marriage even more. 


At 2:45pm Luke finished his dosage of the Myozyme.  We had to stay for another 2 hours for Amy to monitor Luke in case he had any side effects following the treatment.  Luke was pretty amazing throughout the day although Rod and I had to work pretty hard at keeping him somewhat content.  At 4:45pm (exactly) we headed home.  We were tired, anxious to get home and excited to hear about Brett, Josh and Josie's day.  I'm not used to being gone when the boys get home from school and I really missed not being able to take Josie to school.  I'm going to think about this as my new bi-monthly job.  The kids were very happy to see us and Brett was especially concerned about where they had to "poke" Lukie.


We know this is the beginning of a very long journey, but today was a long time coming.  Today was bitter sweet for all of us.  The unknown can be scary.  Yes, this will be our routine for a lifetime (or until there is a cure), but we are so thankful for a treatment, for our doctor who wasn't willing to wait another week to get started, for all the help we get at home with our other kids, and that Luke is as well off as he is.  We feel very fortunate that Luke appears to have a chance at life because of the work done by doctors and researchers like Dr. Amalfitano.