On to Oakland

October 17-19
We returned home from Mexico late Saturday afternoon then the very next day Trey and I headed to Oakland, CA while Mike, Drake and Broc stayed home for work and football.

Trey was invited back to Oakland again this year for assessments leading up to Phase III of the Clinical Trials for enzyme replacement therapy for his disorder; MPS IV or Morquio. I study has been extended from one year to annual reassessments for the next ten years.

Our visit was a good one from the get-go. At the airport Trey was in awwwe of the “Yes Sir” men passing by.
The extremely nice TSA man noticed Trey’s interest. Before I knew it the TSA agent had run down the “Yes Sir” guys and there they were, standing before Trey to say hi and give some knuckles…how cool was that?!

Our days were packed with tests and assessments and Trey was up to the challenge.
From body weight (gained 2 lbs), full height (36.33" last year to 36.37" this year), leg length, back length, hearing, eye, EKG, Echo, 3 minute walk test (numbers were 187 last year to 240 this year...dont know what unit they were measuring in), 6 minute stair test (seemed to walk much less this year than last...my heart ached to watch him push his way up every single stair...felt as if I were watching an elderly person. No child should have to feel this pain ever let alone at age 5!) and a blood test (screamed the ENTIRE time), Trey was a pro, minus the blood draw. The only problem we had was with the Pulmonary function test. Trey seemed to be ok with what he had to do but as soon as the tech brought out the “nose pincher”, Trey was “out”. We were all in agreement that we would practice some more and try this test again next year.
Going into the EKG and Echo Trey reminds me how he like these tests because he like’s the jelly on his belly and he tells me he like’s the other because he get’s to put the “stickies” on me after (don’t ask me why but the child thinks it’s funny when he sticks the EKG electrode patches to my arms and I whence when he yanks them off one at a time – anything to make him smile). During the Echo, the sonar tech takes the time to show Trey his heart, the chambers, the blood pumping in and out, lets him hear the sound of the pumping and even takes a picture of Trey’s beautiful heart for him to take home.
To add to the extremely hospitable tech in cardiology, a doctor passing by take’s notice of Trey’s sweet disposition and offers to him a huge box of football cards to pick out of for being such a super patient. Trey was in his glory shuffling through the box of cards and couldn’t wait to get home to show his big brothers the players and teams he had chosen.


I dialogued with Dr. Harmatz for a bit and expressed our plans for knee surgery in June. Although he didn’t know the exact date that Phase III would come to the USA I was told that we couldn’t undergo surgeries or other clinical trials during the trial phase for MPS IV. Since we were talking about future plans, I also told the doctor we had planned to take the kids on a Disney Cruise in March before Trey had to undergo knee surgery in June. Again, Dr. Harmatz warned against planning too much in 2011…I got the feeling that ERT is coming within the next few months. And then for the realities of a clinical trail, Dr. Harmatz informed me that with this trial like all trials, there would be a group of children that would be in the placebo group. The thought of traveling to Oakland, CA once a week for a year and never to be given the actual drug to help Trey was unthinkable. So that’s just what I did, I stopped thinking about it. We will just have to put this one in God’s hands and push forward with whatever will be His will and be eternally grateful for the treatment whether it really be within the next few months or after the trial phase in a year and a half…either way, hope is within reach and who knows what may come out of this…possibly a cure some day?
After our conservation ended, I had a moment to digest what was said. Was Trey really going to get another chance at a treatment to prolong his life? Knowing that this time around we have the correct diagnosis and that we may actually see results, made my heart skip a beat. I reflected on all our family had been through in the last few years with the misdiagnosis and unnecessary infusions. I remembered the heartbreak of the diagnose on that devastating November day- our “D’ day” but also remembering being extremely grateful for the treatment that was available to our 2 ½ year old baby. I was beyond thankful of the treatment and at the time could NOT comprehend the sadness the other MPS families whose MPS disorder didn’t have treatments available to them. I couldn’t imagine being told such alarming news with nothing but hope and prayers available to help Trey. The misdiagnose and “D-day” #2 comes and again we are thrown into the middle of this tornado; more heartbreak. We were now on the other end; we are one of those families without a treatment - with only a wish and a prayer. Fast forward almost exactly two years and here we are, November 2010 with a treatment within our reach…God is good! Mike and I have seen this grisly disease take a toll on Trey’s little body and we know to live in the past of “what if’s” would be destructive, although, we can’t help but think of how a diagnosis of MPS VI and a treatment of Naglazyme would have helped Trey these last two years. Back to the moment, I gain composure, wipe the tears and say a quick prayer that Trey would be chosen for the trial’s and continue on with the day’s testing (Trey is being so good by playing with his DS and gave me the quite time I needed at that moment).

To add to the nice trip, Trey and I got to meet two other MPS IV families. Bekah (4) was joined by her mom Dawn and big brother Gabriel and Chris (10), with his mom Denise. I was so thankful to be given the opportunity to talk with these two other mothers as well as for Trey to meet Bekah and Chris.
Immediately Trey was drawn to Chris and instantly thought he was a “cool guy”. In the same instant Bekah determined that Trey didn’t talk enough – just like Trey and just like a girl to want to be chatty – it was so cute to see the two of them around one another.

Our flight was nice and uneventful; man is it nice not to have to fly stand-by…much less stressful for this mama.


Besides all the test’s, something new was added to this years process. The kids were given a watch to wear for two weeks. The medical name for the watch is the “Actiwatch”. The Actiwatch is a medical device that records motion. The way I understood the reasoning behind the patients wearing this watch was because there is a theory that just one of the reasons of poor growth was the lack of REM or overactive sleep patterns the kids experience on a nightly basis and that this watch could trace these patterns and help to confirm or deny this theory. Last night was the last night Trey was to wear his watch and boy was he happy to take it off. I knew Trey was ready to send his watch back about a week ago so we’ve been counting down the days. I remembered to have the camera ready to take a picture of Trey this morning (Nov. 2nd) as I took his watch off.
Trey’s first words were to remind me to take off his watch; even before his eyes were open-haha!
But when he did open is eyes, he was all smiles feeling that I had taken his watch off.


Now we just sit and wait for the call stating that we have been invited to begin the next chapter in Trey’s book of life… and with the expectation that with a treatment for MPS IV, an extended one!

practicing for next years Pulmonary Function Test