March Madness

Breathing a sigh a relief, I am so glad that our own “March Madness” is finally over. Travel is fun, but not under these circumstances! So after the last medical trip of the month, I can report the latest and not so greatest.

Oakland started out so non-stressful, just routine…much easier than anything Trey has been through in the past. Well, yes, much easier on Trey, but oh so much harder on Mike and I. We were informed that the Phase 1 and 2 trials for the upcoming treatment for MPS IV was not awarded to the U.S.A. but instead went to a town in England . In the same sentence we came to realized that this meant IF phase 3 came to the U.S.A. it would not be for approximately three more years. My first thought was, “Were there!, when does it start?” I was told that trials usually don’t welcome children under 5 years old (Trey will be 4 years old tomorrow, April 17th). Another piece of my heart began to break and all I could think about was my dear friend Margo. I remember saying to her over and over again how I couldn’t imagine how she did it, how she stayed strong for Nathan having to wait years for the Naglazyme treatment to come but in the meantime sit helpless, only to watch the horrible disorder take a toll on her son’s body. I felt so thankful that if Trey had to have MPS 6 (VI) at least there was a treatment available to us NOW. But sadly enough, this too was now my fate. With the new diagnosis come no cure and No Treatment! Again, a mama bear with the will but no way to fight for her baby. To have to wait even 9 months (which is about what we thought it would be originally) seemed like a lifetime away, but three years?! Only time will tell…doctors have been wrong before, maybe they will be again this time, in our favor.







Our visit to Oakland was scheduled to be very busy but because Trey was doing so well with all of his appointments, we had a little R&R in between. Trey went through a physical exam, gave blood, accomplished a six minute walk test with vitals taken immediately after, gave a urine sample like a pro (he thinks it’s funny to get to pee in a cup), measurements of his weight, height (standing and sitting 3x’s a piece) and knee length were taken, a visual test, an echo and an ECG along with a 3 minute stair climb test that he mastered – Trey climbed 69 steps and could have kept going but the time was up. Mike and I were so proud of him! Dr. Harmatz and Jo Ann (his clinical research coordinator) were so accommodating and informative. Other than the sad news the “Assessment” visit was not too bad.



Being away from Drake and Broc again got a bit harder with the start of each good-bye and they too felt the effects of all our time away…we were all glad to be home and together again.



We are awaiting the results of the Echo and ECG along with the levels found in Trey’s urine and blood. Everything else was pretty much about collecting information for a later time (after treatment has taken place and the results of this visit can be used to compare with the effectiveness of ERT).



We are looking into having Trey’s port taken out since ERT seems to be so far out and that there is always the possibility of getting an infection in Trey’s port. The surgery for this should be relatively “routine”.



All of the information that the drug company and the insurance company needs for growth hormone has been submitted…if approved, a nurse will be out to teach Mike and I how to administer the GH shots. I pray that this will work, even if just centimeters at a time.







Looking forward to starting swim classes and a new type of therapy along with Trey’s 4th Birthday !



Blessings,

The Lanes