THE BOXING GLOVES ARE ON

As the email’s come rolling in like kisses from a puppy, my heart is filled with love. Each one has given me more and more strength to continue this fight. Yes, this sucks but today and tomorrow and the next day I will keep fighting this fight until I know what we are dealing with and how to fight it…my babies life is an extension of my own, when he hurts so do I, every parent knows the pain to some extent. I will do all that is in my power to do the best by him and not stop until I get the answers I’m looking for. Thank you for the encouragement!



Thank you more than those two words can express!

Cami

The unknown is what is the hardest

Where to start?

This past week has been a bit tough on me as my thoughts race into the “what if” arena by the minute.

After seven months of trying to get Trey’s MRI read, it finally happened this past Wednesday. The neurosurgeon stated that from reading Trey’s MRI the situation looked very troubling. Trey’s C1 vertebra (atlas) shows that it is much smaller than it should be. Because of it’s small size, it has slid inside the base of his skull (foramen magnum). The doctor explained that the C1 and C2 should be stacked one on top of another but instead Trey’s has been forced forward and that his fear is that Trey’s spinal cord is being pinched. We were told that this situation could be very dangerous in relation to movement in Trey’s arms, legs and breathing. We were advised to repeat Trey’s MRI along with performing a CT Scan. So much disturbing news was being delivered to us as the doctor read Trey’s scan. Upon finishing reading the scan, the doctor asked Mike and I if Trey walk’s? ”Does he walk? HE RUNS” we stated in unison. He then asked if Trey has a grip? “A grip as strong as a gorilla”, Mike said. Mike also mentioned that Trey was potty trained. The doctor looked up for the scan and I quote said, “He’s doing very well, I would hate to treat a scan rather that a boy”. So, as scary as the scan itself read, Trey is proving them wrong. Only now I am now so afraid of the “one wrong move”. Once again we will have to wait for results from yet another test.

Speaking about waiting for results…after seven months into Trey’s infusion we are informed that Trey is not responding to the Naglazyme infusion (Enzyme Replacement Therapy). Trey’s beginning urinary GAG level taken February 19th was 264 and four months into infusion, June 26th, were reported at 300.9! As you are all well aware, I have been asking for these before and after results religiously. After an email to Trey’s geneticist stating that this wait was “ridiculous” and requesting for the phone number to the lab, a phone call came this past Friday from the doctor himself.

De ja vou…troubling news. Only this time we were being told that not only was Trey’s body not responding to the medicine, that to the best of their knowledge it has never taken this long for a patient’s GAG level to drop...noticeably! We were informed by the drug company, Biomarin that after receiving the ERT the results are almost immediate in every patient they’ve had. SEVEN months and how many thousands of dollars later we are NOW being told that the once a week, seven hour day infusion’s aren’t working! I’m so confused at how (because we’ve learned first hand, more than once!) the blood can become contaminated within hours of being taken but can take three months to produce results from??? I am becoming a “pit bull with lip stick” for the sake of my son’s survival!

Now the fun begins. Does Trey have MPS VI only or was the diagnosis incorrect or incomplete? Is the medicine being denatured (mixed wrong) causing it to break down, therefore not being effective? Is it being administered correctly? Was the blood once again mishandled, contaminated, or stored incorrectly for all those months? These are all the questions the professionals are now looking into. In the meantime, Mike and I get to play the waiting game. The unknown is what is the hardest, and again, the “what if’s” break my heart.

At this weeks infusion we will be redrawing blood and recollecting urine from Trey to repeat for GAG levels and relook at urine for pattern of excretion. The next day our family will be headed to MN to see a specialist in the field of Lysosomal Storage Disorders. We are so excited about this appointment and at the same time very anxious about what we will hear this time. It is our hope that while we are in MN, Drake and Broc will be tested to see if they could be a possible match for Trey in the event that a bone marrow transplant would be an option.

Please continue to pray for our baby as our journey continues…

Love,

Cami Mike, Drake, Broc and Trey

p.s. attached is a picture of the anatomy of the spine and two pictures from Trey’s first day of preschool

The best of news!

Hello,

As a follow up to Mike’s update and to thank all of you whom so willingly helped put such an incredible fundraiser together for us and Trey, I had a bit of my own to be thankful for that I would like everyone to know about (for those of you who weren’t there and didn’t witness firsthand).

As most of you have seen or read, not only did Dan and Robert host an exceptional fundraiser, they also got Trey and MPS a multitude of media attention. Since the articles and news reports ran we have been inundated with people calling the reporters, Trey’s bank, emailing us personally and on the blog spot wanting to help. One of those such people was a lady who read the Arizona Republic article then went to Trey’s blog spot and posted a comment about her son who has MPS VI and who lives’ right here in Tempe, ARIZONA! I have to be honest and tell you all that I thought it was a hoax and was up all night in tears in the thought that “what if, just what if, this is true?” How could our geneticist, the MPS VI specialist and the MPS Society not have known about this family only 10 miles away? Another reason I thought this may not be a vial comment was because the lady who left the post didn’t leave a return address. I posted a comment to “The Willis family” letting them know I had a million questions for them and could they leave a forwarding address. God answered my prayers! The very next morning an email address was left, contact was made and Mrs. Kaylene Willis had written me a two page email with many pictures attached of her beautiful family, of them, one that included her 20 year old son, Taylor who in fact has MPS VI! Jerry and Kaylene have three amazing children, along with Taylor , they have Brittany who is 23 and Makayla who is 15.

Kaylene’s email read like a fairy tale to my heart compared to what I’ve read and have been told about MPS VI since Trey’s diagnosis! Taylor was born in December 1987 and diagnosed in 1989. The Willis family was told that gene therapy was on the horizon and that they could wait for that (thank God they didn’t wait, they’d still be waiting) or that a doctor in Minnesota had been successful getting the missing enzyme back into the body with bone-marrow transplants (BMT). Brittany was Taylors only sibling at the time, was tested and was the perfect match for Taylor and the BMT. Kaylene goes on the write that Taylor has had 19 surgical procedures including carpal tunnel surgery and a bilateral hip surgery but has actually been healthier in general than his sisters. His mom brags (like all mom’s should ) that Taylor is a gym rat with abs of steel, some pretty awesome “guns” and 4% body fat. Taylor attends community college and can drive himself to most places. Their/his next big decision is cornea transplants and the timing for that. Most importantly “ Taylor is one tough dude that really handles life and its challenges quite well and that although he has some areas that are weak his strengths more than compensate for any weakness” says Kaylene.

As you can just imagine I was walking on clouds with this fantastic news and prayed with all that I have that Trey’s life will be as blessed as Taylors has been. What’s more is that along with Kaylene’s email she had left me contact phone numbers for her family. I was so ecstatic to let everyone know about this unbelievable news and how all of Dan and Robert’s efforts had restored hope in Mike and I’s lives that I called Kaylene and Taylor and asked if they would be able to come to Trey’s fundraiser that was being held that very night in only two hours. Low and behold…this wonderful family was there (with the exception of Makayla, who was cheering at a football game for Corona Del Sol High School that same night!). Trey got to meet Taylor (see attached picture) that night and Mike and I got to meet an amazing family who in an instant brightened our outlook into Trey’s future providing uplifting stories and encouraging words to this surreal roller coaster of emotions to which no doctor and/or the internet can come close to providing relief from.


Once again we have been blessed

Lots of Love,

Cami, Mike and the boys

A warm thank you from Trey Lane 's Family!

Dear Friends,
I wanted to take a brief moment and express my sincere thanks and gratitude for the amazing treatment my loved one's have received from the City of Tempe .

Cami and I are still reeling and absolutely "blown away" by the level of graciousness and support shown by our extended Tempe PD family at Trey's recent Fundraising Event held at the Tempe Mission Palms Hotel. We would be remiss by not singling out Dan Masters and Robert Pargmann for being so instrumental in planning such a remarkable event for our son. I also know Dan's Planning Committee of fellow co-workers and friends took on a daunting task and worked tirelessly to ensure it went so well. You are all truly amazing!


Also, we realize a lot of caring people could not make Trey's event were also there with us both spiritually and emotionally - this support and love has meant the world to Cami and I.

I wish to add that we would be less than truthful in saying, "Everything's fine", not a day goes by that Cami and I aren't tearful in varying degrees but having experienced such an act of selfless giving, abundant love and sincere kindness from so many wonderful people has truly humbled Cami and I and restored so much hope in our hearts for Trey's future.

We are truly blessed, grateful and thankful to have all of you in our lives!
Appreciative beyond measure,
Mike, Cami, Drake, Broc and Trey

Click here to see a recent News Story done on Channel 15 about Trey's Fight against MPS-VI.)
Jose Miguel story "Valley toddler suffers from rare disorder, needs your help"

1st Annual Treasure Chest for Hope Fundraiser

Hi everyone,

Announcing an update and lower event price for the 1st Annual Treasure Chest for Hope Fundraiser. This was sent out to the Tempe PD this past Sunday. Please feel free to contact Dan Masters if you have any items to donate, a question or concern at dan_masters@tempe.gov. Dan and his partner Robert have put this entire fundraiser together for us without asking for our assistance or time…we can’t begin to thank them enough. This is going to be a fantastic event! Please join us once again to help us as we raise monies and awareness of MPS VI and for the MPS Society. Buy tickets on-line at www.earcandyproductions.org . and click on events.

All our gratitude,

Mike, Cami, Drake, Broc and Trey



NEW PRICE & EVENT INFORMATION BELOW…

This is a CASUAL event in which your support is needed!

Buy your tickets by September 3rd!
New Ticket Price, Dinner, Raffle Prizes, a 50/50 drawing, over 100 Silent and Live Auction Items, a chance to win a $100.00 gas card, all while helping Sergeant Mike Lane's 3 year-old son Trey as he battles a life-threatening disease!

Here is a sampling of just some of the over 100 auction items that will be available
on September 12th:

* Vacation Package to San Diego including airfare, hotel, rental car, and dinner
* Amazing sports memorabilia including an autograph/photo from USA Olympic Swimmer Michael Phelps, Diamondbacks Tickets, ASU Football Tickets, Arizona Cardinals VS Dallas Cowboys Tickets, autographed Arizona Cardinals Football, Phoenix Suns & Phoenix Mercury Items, and many more sports-related and one-of-a-kind collectible sports memorabilia
* Numerous golf packages at a variety of courses around the state
* Several Hotel Stays
* A set of new tires
* Vacation getaway in Northern Arizona
* Complete car detail
* Vehicle tint package
* Dozens of Restaurant Gift Certificates
* Numerous massage packages

And MUCH MUCH more…over 100 items to bid on!!!

It is not too late to donate an item for either the silent or live auction…contact Sergeant Dan Masters for further details (dan_masters@tempe.gov)

Please help us in supporting Mike, his wife Cami, and the entire Lane family as they courageously fight this devastating disease.

“fighting this fight”

Hi everyone,

Again, it’s been awhile since the last update…I’ll explain.

Our meeting with the specialist in the MPS field,completely took the wind out of our sails and had taken me “out of the game” for the past two months...I have been a nervous wreck to put it mildly!

The doctor informed Mike and I that because Trey presents with so many skeletal symptoms at such a young age that he thought Trey had a rapidly progressing form of MPS VI. Mike and I just looked at each other in despair and disbelief. In our opinion Trey doesn’t look like the pictures of the children that represent MPS VI on their web site so to us this news was deplorable. Another sample of Trey’s blood and urine was sent to the lab along with the original (frozen) sample from before the very first infusion to find out Trey’s GAG levels (an indicator of the build up in his system) and if in fact the doctor is correct in his predictions. We were told the results would be back in two weeks…we are now working on 8 weeks!!! Another reason I was putting off this update. I was hoping to report the GAG results in this update…no such luck.

The main reason I put this off was because I’M NOT STRONG!!! After the doctor took a look at Trey’s charts, he informed us that we needed to have another blood test run on Trey to eliminate the possibility of another absolutely heartbreaking diagnosis. He called it Multiple Sulfatase Deficiency and honestly I don’t know much about it because I don’t want to know about it. What he did tell us was that if Trey tested positive for MSD, he would have a combination of MPS II, MPS VI and MLD…I thought I was going to die. We knew how debilitating MPS VI could potentially be to Trey’s little body but we were now being told that if he has MSD, he will have MPSII which affects the brain (the one thing MPS VI doesn’t affect) not to mention the extreme symptoms of MLD. I was told that the results would be back to us very quickly, within two weeks…are you kidding 2 WEEKS!!! To a parents heart that seemed like forever. What ever happened to over nighting it and getting results the next day??? I know the technology exists but obviously not in the cards for us. We gave the blood sample on Thursday and on Monday I was informed that the samples weren’t shipped overnight! We couldn’t give another sample the next week because of the 4^th of July holiday hours that week and the following week we were in Michigan on vacation. FOUR weeks later we gave another sample which again we were told would only take 2 weeks to get results from.

The unknown has been eating me up inside. “Please God not more” was all I could think. They say that God only gives you what you can handle well, I honestly felt that I wouldn’t be able to handle this blow. I have been “numb” for weeks, so afraid of the unknown. I couldn’t believe I was having to go through this process of getting diagnosed all over again. As if the wait wasn’t hard enough the first time! For those of you who remember the first time we gave blood and urine to originally diagnose Trey for MPS VI, the samples were misshipped, lost, broken vials, not enough (all the reasons they gave to us) and again we couldn’t get them to the lab the following week due to the holiday’s. Too much of a coincidence…I have been scared to death. I didn’t give an update because I wasn’t strong enough. I wasn’t strong enough to handle all the calls and questions, questions that I had no answers to. I seriously didn’t know how I would live through this one.

EIGHT weeks later and the results came…we are so extremely relieved to report that Trey does not have MSD (Multiply Sulfatase Deficiency)!!! For the first time I am happy to say our baby has MPS VI and only MPS VI! Thank God for this news :o)

Trey is still doing magnificent with his infusions…our perfect patient. Mike and I are becoming concerned with the fact that Trey hasn’t grown an inch or gained a pound for months and will be addressing that issue soon. We realize that one of the symptom’s of MPS VI is a form of dwarfism but, some patients have reported that the Naglazyme infusions have jump started their growth so that is what we will look into (dosage, timing, age etc).

The MRI results are still yet to be known…I am so unimpressed with the medical field (go figure). I can’t believe we pay all the money we do when I feel like I do half the work!

We still have no monetary result from “Vegas nights”and are still working on getting the bank’s “match” from the Memorial Day golf tournament. But I am happy to report that the 4^th of July watermelon booth at the Tempe town lake was a huge success (thank you James)!!! The money from that fundraiser has been sent to the MPS Society and we feel great about it! I will be forwarding each of you a flyer from our next fundraiser, “Trey’s Treasures Chest for Hope” fundraiser will be held at the Tempe Mission Palms on Friday, September 12^th…look for the flyer in your in-box following this update. Dan and Robert are putting this on for us and the job they are doing is incredible! The prizes, the place, the menu, and the media...over the top! If you or anyone you know of would like to join us, ticket sales are going on now, please check out the flyer.

And last but not least…NORD (the National Organization for Rare Disorders) have approved us for the financial assistance of Trey’s infusion through 3/09!!! I guess the third time truly is a charm :o) Mike and I are ecstatic to say the least! We understand that this is only a temporary fix and are still “fighting this fight” and continuing with the fundraisers to raise money to donate to the scientist’s and researchers in order to help find a cure! We are so happy to be given this assistance to turn around and able to be a part of the bigger picture!

We are so appreciative of all the care and concern, thank you!

XOXOXO,

Cami, Mike, Drake, Broc and Trey

Attached are pictures of the boys in Michigan (it was so great to get out of the heat) and of our littlest angel praying…too cute

Infusion #15

Hello everyone,