Emotional Day

October 15, 2014

 

In October 1988, President Ronald Reagan Proclaimed October as National Pregnancy and Infant Loss Awareness Month.

 

There have been numerous days since Treys birth that I have felt extremely blessed to have him in my life but I'd have to say that today ranks right up there at the top.

 

A little over nine years ago, my dear friend Gia experienced the birth and death of her new born, Sable Marie.  Almost 9 1/2 years ago to the day, I experienced the birth of my angel, Michael Trey.  Gia and I went through the pure excitement and joy of pregnancy together.  Needless to say, Trey is still with us whereas Gia and Baxter had to say goodbye to their angel Sable almost as soon as they welcomed her into this world. 

Gia holding Trey just weeks before Sable would be born

 

Today it was with mixed emotions, that I was honored to be personally asked to join Gia and her family as they had the ribbon cutting ceremony for "Sableswings Comfort Room".  A room for grieving parents to cope and pray in.  A room in the maternity ward of the hospital that both Trey and Sable were born.  This room goes to show that from the tragedy of death comes the birth of Gods larger plan.

 

I brought the boys with me as they not only witnessed the ribbon cutting ceremony but also the tears that I could not hold back (as hard as I tried).  I tried to explain to them, in 14-9 year old language, where my emotions were stemming from.  I told them that today was a reminder that WE ARE THE LUCKY ONES! I can't begin to count how many times I have felt the "elephant in the room", the "target on my back", the looks, the stares, the whispers of people feeling sorry.  What they don't understand is that I AM LUCKY! I got to walk out of that hospital 9 1/2 years ago with my angel in hands. Some parents aren't so fortunate and no matter what the outcome is for Trey, he is here, he is ours!  We get to experience a smile and personality that lights up every single room he walks into!  We get to be reminded of the little things.  We know not to take things for granted.  We cherish because we have witnessed the alternative.

In Loving Memory and Rememberance of your Loss~xoxo, Cami

 

 





Starting Up Again!!!

Hi everyone, Hi "Trey's Treasures"! I'm SUPER excited to say I'm STARTING UP AGAIN! I'm going to try my very best to update Treys blog on a more constant basis. I believe my last post was more than 2-years ago and as you can imagine so much has happened in that time. Instead of trying to capture the past in one extremely long blog entry I will make this one short-n-sweet then continue to go back in time, until we are up to date. For today, I'd just like everyone to know that Trey is now receiving his infusions in ARIZONA!!! For the past three years we were a part of an amazing group of families that together, through a clinical trial, received FDA APPROVAL of the enzyme replacement therapy for MPS IV-A!!! The approval happened this past Valentine's Day and already Trey is the "talk of the town"! ***See our latest at "raising awareness" tonight on News Channel 12 at 6:00pm*** All our love, to those who continue to support Trey on his journey and those we have met along the way... his story continues.

Disclaimer: Please excuse the "hiccups" as I try to figure out whose who as far as emails goes and which ones are still current.

Run for Broxton

February 12, 2012


In a previous post I wrote about my new found friend, Kristi and her son Broxton who was diagnosed with Batten Disease mid-2011. Today the five of us participated in a fundraiser for Broxton that consisted of a 5k run/walk and a fun run for the kids. The night before the fundraiser I explained to the boys a little bit about Brox and his disorder. Although they were all extremely tired from the days activities, they all agreed that it was worth waking up bright and early for Broxton and to show support for his brother Brody. I was so proud of the boys for being able to understand how much their love and support meant to me and to the Taylor family as well. Batten disease is also one of the diseases found in a group known as lysosomal storage disorders-like MPS (Trey's disorder). The day I met Kristi as we hugged upon meeting I told her that I was sorry and she replied with, "it's ok". I looked her in the eyes and said, "it's not ok and that of all people, she did didn't have tell me it was ok because it's not and that I understand" Today, I am so sorry to say that I don't understand and honestly will never, ever will. I love you my friend and pray for you the strength you, Cody and Brody need in these trying times! xoxo

Time Flies

February 2012

WOW…just when I thought I’d given myself a breather and pretty much caught up on postings for a while, time flew by and it’s already the end of February…making me way over due on updating Trey’s blog.
This coming Thursday will be 20 weeks …5 months already that we have been flying back and forth to Oakland on a weekly basis…time sure has flown!
The good news is Trey has had no adverse reactions and is doing better than I thought with keeping on top of his school work and his spelling tests every Friday. The bad news is, we know for sure these weekly trips will continue past the original 6 months we were told and most likely even longer than a year. The whole study will last for a total of 240weeks (4 ½ years). Who knows when the sponsors will find the time to set up an infusion site here in Arizona…only time will tell.

Week 12 of the study consisted of two two-day trips to Oakland, as well as lots of tests and blood draws. The kids were still on Christmas break so as a treat to them, all five of us traveled North to support Trey. So much went on those two weeks and every week that followed (all good) that I thought instead of giving a week by week dissertation, I’d just add little captions to some of the pictures I've taken along the way.

"See ya" my 'good walker'-as Trey called himself. Once again I had to bribe Trey to get him to cooperate in the walk test and the stair climb…of course it worked and Trey was my little All Star!
Goofing around adding Brocs hair and mine to Trey for some pretty funny pictures!


For those of you who don’t remember, Drake becomes very queasy at the sight of blood. Trey on the other hand is a “vampire” and insisted on teasing his big brother with his all his vials.
As part of another bribe, I brought Trey some Bears tat’s…he was so proud to show them off to the girls.
As a special treat we had the honor of meeting another MPS patient /family that was in town enrolling in the study…introducing “Miss Isabell”. Yes, she insisted I call her Miss Isabell-how cute is she?!
So now that Trey is an ol’ pro at every step of his weekly routine, he thinks he can do it all himself and even mommy…taking my blood pressure like a big shot!
Did I tell you we bribe Trey a lot to get him to perform for this study? Well for whatever reason, last weeks’ accomplishments got him an official Chicago Bears uniform. Hello, “Mr. Tough Guy”!
Another adorable picture of the future Mr. and Mrs. Lane enjoying a Jamba juice together at the airport before parting ways…until next week!
I will never know if Trey is actually receiving the enzyme or is a part of the placebo group for this study but after seeing how strong he’s becoming and how soft his hair is getting, I’m beginning to wonder (although I’d never admit it to the doctors). Check out Trey doing the strength training that Broc puts him thru on a weekly basis…you little stud you!

Traveling with Justin and Kianna has been a treat for Trey (not to mention Kianna has a I-Pad).
Mr. Personality as the Oakland airport concierge…he is such a ham!

Hamming it up again…Trey asked the flight attendant if he could wear his seat belt like this for take off-haha!
The kids made the most of a cancelled flight. Justin gave Trey a ride around Burbank airport as we waited two hours for the next flight home.

So for today we say “Seize the Day” and be thankful on so many levels;
That a treatment is here,
That Trey is able to be a part of the study,
That there is so much worse than weekly travels,
That no matter what group Trey was a part of in the first six months, four weeks from now, he will positively be receiving the enzyme that his little body requires so critically.
And that unlike last time when Trey received an enzyme replacement therapy for the incorrect diagnosis and three quarters of a million dollars was taken from his insurance benefits, this time the study sponsor is paying for all tests and procedures relating to the study.

Up, Up and Away my little Frequent Flyer!

Fiesta Bowl FUN!

January 2, 2012

I know my friend would not want to be mentioned,given credit for and showered with all the love and thanks I can for the remarkable time we had at the Fiesta Bowl this past week...but all thanks to her and the 5 tickets she bought for us to enjoy such a thrilling event! Even though our Draker's Stanford Cardinals didn't win, we had 'edge of our seats' fun! Friends like mine are far and few between, Thank You Nicole for our Christmas gift-you, yourself are a gift to us!

Happy New Year

January 1, 2012

Another New Year's Eve with out Mike as he had to work, again! The boys and I had a good time making Scookies, playing Rack-O and lighting off fireworks with the neighbors. The boys saved some of their fireworks to light off with Mike the following night and had a great time doing so with "Daddy Disney"!

Happy New Year to each and everyone of you and a ginormous Thank You for following another year of Trey's journey on his blog. None of us know what 2012 has in store for us but we do know that even if Trey is part of the placebo group in these clinical trials, that it is only for the first six months (which for us will come to an end in April). After that time, Trey will be given the ever so needed Enzyme Replacement for his life threatening disorder, one that we pray will extend his life and possibly even provide internal and external benefits. Benefits that we will be able to recognize in Trey on the outside, and after the trial is over, will be measured and reported to us in the form of positive, encouraging results on the inside.
We wish for all of you and your families the same news of hope and a positive 2012!

Lovin' another nurse

December 29, 2011

Devora was Trey's infusion nurse today and boy o'boy did she have his number within a moments time. Another nurse that we love here in Oakland and are so appreciative of! Devora was spot on with Trey when she came back from the toy box with a bear...a green soccer bear none the less! Trey loves his new bear, "kicks" almost as much a Miss Devora :o)

Merry Christmas

December 25, 2011

Ours was a very Merry Christmas, as all three of the boys revelled in the "spirit" of Santa Claus and all his wonder...another year for Mike and I to take in the magic.
God Bless~Cami
*Auntie Claus and Uncle B happy to see that once again, Trey was elated with their gift to him...A Bears Jersey-Brian Urlacher...but of course!

An EXTRA Special Gift

December 24, 2011
The continuation of the Pearl "Adopt a Family" fundraiser...
Instead of presenting our family with Visa gift cards, Tammy and I decided to present Trey with the one and only toy on his Christmas list...a Razor 4-wheeler with (according to Trey) "real" tires. As a result of all the hard work, Tammy, my brother, Steve and the rest of the employees of Pearl Sushi, Tammy was able to come through with a gift for Trey that Mike and I couldn't afford, the one gift that we had to keep making up excuses for why Santa wouldn't be able to deliver to Trey as well. Although Trey's expression didn't do justice to what I just know he was feeling inside when Steve and Tammy furnished his Christmas wish, Mike and I were once again grateful for friends and family who bestow their love and support on our child, time and time again. Tammy also remembered Drake and Broc as well as Mike and I in her generosity. The older boys received Visa gift cards and Mike and I a dinner out. I realize that you can't always get your children everything they ask for at Christmas time but knowing all Trey has gone through these past few months with the travel, long days, and test after test associated with the clinical trials, this gift couldn't begin to have a price tag attached to it...in my book, Trey was very deserving of his EXTRA Special gift and Mike and I are EXTRA blessed to have Tammy in our lives, for loving and caring for us as she has this Christmas!

Christmas Card 2011

Thank you my sweet friend Ashley for helping me get over the guilt of not sending out Christmas cards this year by explaining that by doing Trey's blog, our friends and family get to see pictures of the kids throughout the year and that people would understand.
I did make a few cards so that I could stick them in the boys' scrapbooks so that when they grow up they will never really know which year I missed, ha-ha!

I sure hope you all do understand and that this will suffice, for this year anyway.

Merry Christmas to all and seriously, the night before Oakland, to all a goodnight-zzzzz!

Jingle Jog

December 21, 2011

Today the boys' school held it's annual Jungle Jog. Every year in the beginning of the term, the Student Council votes on the local charity that they will raise money for at the Jingle Jog. This year with Drake being a member of the Student Council and the school Treasurer, he suggested his little brother be the recipient of the fundraiser and pleaded his case by telling the staff and Student Council all about how soon, his baby brother will be going to Oakland every week for Clinical Trials on his disorder. All voted and Treys Treasures received the honor. This is the flyer that went home to every student. After seeing the flyer, I was ecstatic to see that Trey's blog was added to the flyer and that no matter the amount that is raised for Trey's medical, awareness is sure to occur! Thank you Drake, Thank you Haley Elementary Student Council, staff and students for making Trey beneficiary of this "healthy" event and fun day!
Trey enjoyed stretching before the jog, posing for a class picture and during the jog he was in his stroller as his classmates gave him "knuckles" and high- fives when they jogged by him. Trey also had a lot of fun cheering on his friend at the finish line as they completed the race.


As a side note, both Drake and Broc came in first in their grades in the jog - a jog it was not to them...of course to them and their friends, the race was on!

Not a Stranger

*December 21, 2011

I've explained how Trey and I have meet so many nice people on our travels to and from Oakland week after week, whether it be the airport, on the plane, in the hospital, at the cafeteria...we have met some extraordinary people. Mr. Johnathan is one of those people. I started talking to him after I took notice that not only was he on our flights in the am but also the pm. Soon into our conversation we began to talk about Trey and our reasons for travel as well. It's nice to see familiar faces at the airport week after week and even be given a heads up about late flights...Johnathan is one of those people. Yesterday he asked for our home address as he brought me to tears with his reason for wanting to send a little something to Trey for Christmas. Johnathan said, "Trey reminds me why we live".

What started out as a perfect stranger has ended up being such a wonderful person. Today a box came to the front door addressed to Trey. This was his reaction, word for word when he saw what Mr. Johnathan had sent him, "Yeeeeees, Yahhhhhh, Whoooooo! Just what I wanted for Christmas! Thank youuuu Mr. Johnathan, you are the best!" Yup, Trey loved the gift and so did I as I was witness to the joy on my babies face. Thank you Johnathan for being such a good listener (haha- you remembered Trey likes Da' Bears) and now a good friend!
*Trey "wearing" his new Chicago Bears blanket...he didn't want to set it down.

You Deserve It!

December 19, 2011

My high school friend Tammy Safriet-Carlin (and owner of Pearl Sushi) adopted Trey and a family from their church for this years Annual Christmas Adopt a Family(s) at Pearl Sushi Lounge and Bomber Bar. After she held the fundraiser for Trey in October and learned about MPS, she really wanted to help/adopt another MPS family this Christmas. I told Tammy about Darla and her two children, Justin and Kiana and how much they could use the help this Christmas...esp since they too will begin weekly travels to and from Oakland. Without hesitation, Tammy adopted the two of them and was very pleased to do so. I decided not to tell Darla a word about the fundraiser as it took place throughout the month of December at the restaurant.
Yesterday Tammy and I, four of her kids and my three all surprised Darla with two Chase gift cards loaded with money on them to spend as she wishes. Darla was so stunned and even emotional (as you can imagine). I can't thank Tammy, her husband Jimmy and the employees of Pearl (my big brother Stevie too) for holding this fundraiser and adopting Trey, as well as Justin and Kiana this year.
It felt so amazing to walk away from their home knowing what that "gift" meant to the three of them. I can't imagine how special is must feel for Tammy to have the means to be so generous to so many so often...I got to feel (on a larger scale) what it means when they say it's better to give than to receive.

*We are headed up to Pearl in Saturday so that Tammy and my brother can present Trey with his extra special gift from Pearl...more on this to come!

The kids and their cousins had a gingerbread house making competition and Trey won!!!
Helping Trey with his house was right up my alley but experiencing the kids being creative and then not being able to handle the sugar high was just as much fun! Thank you Auntie Cathy for supplying the houses and all the fixins'!

Little Elf

I just had to post this...Trey's teacher is so creative and out did herself once again with these little elf's...Trey's classmates. She hung them in the hallway outside their class for all to enjoy...enjoy I sure did! Thank you Mrs. Nelson for not only being an AMAZING teacher but also a super creative one too!

Me and My Uncle B

Aunt Cathy and Uncle Brian got to spend a rare one-on-one day and night with their little Treybo last week. Trey was in his glory, spoiled rotten and feeling like a big guy for getting to have a sleep over without his brothers! I can't remember all the cool stuff Uncle B (and Auntie C - she never, ever gets the credit) sent home with Trey the next morning but I just had to get a picture of the two of them dressed alike! Trey was as happy as could be to be a "yes sir guy" like his uncle...every kid needs an aunt and uncle like the two of them!!!

Infusion #9

December 15

Nurse Janie is so thoughtful and generous! Today she told Trey and Evie how an elf came to her house and asked if she knew any good little girls and boys. Of course she said she knew Evie and Trey and so Santa's elf left a present under her Christmas tree for the two of them. Trey was so excited to receive his Cal Bears and I was equally excited to be given a Disney Holiday Craft book...perfect timing for the kids' school holiday parties! Thank you so much nurse Janie for the gifts and for being YOU!!! She makes our weekly visits to Oakland that much more tolerable.

Sometime during today's infusion Trey turns to Evie and asks her what she wants to be when she grows up. Evie's reply is, "a unicorn". Trey comes back with, "Oh, I’m gonna be a Navy Seal." I guess he must have thought about Evie's answer because he continues with, "No, what job do you want to be?" and again, Evie's reply is, "a unicorn!" Erin and I look at one another and just laugh. Erin then says to Trey who has a perplexed look on his face, "We’ll have to start working at that right now!" They most definitely each have a mind of their own!

At the end of Trey's infusion, he and Evie had been playing in her bed when it was time for Trey to be unhooked from his iv. Nurse Janie took Trey from Evie's bed and told Evie she could join Trey again after she de-accessed Trey's port. Evie was very upset (almost to the point of tears). Erin tried to hold Evie as she squirmed and whined, when finally she said, "BUT he ALWAYS wants me to hold his hand". Erin and I melted at her sincerity.
Immediately Erin let Evie down and in an instant Evie took Trey's hand to "help" him through pulling off the tape and the yucky needle part. How sweet was that?

Erin told Mike (Evie's daddy) and sent him this picture. His reply was, "Heck, we may as well just start planning the wedding" -haha! After seeing this picture Erin took of the two of them, Mr. Mike just may be on to something :o)
On our way our of Sky Harbor airport but who do we run into but Santa Calus himself! We hurried to let Trey sit on Santa's lap so he could tell him once again about this big truck he wants...got a cute picture and off we went down stairs to catch Lesz, our driver to take us home sweet home.