Trey's Treasures: Infusion #15

Tuesday, September 9, 2008

Infusion #15

Hello everyone,

First things first, Trey is doing wonderful, his infusions are going great and he is one happy and busy boy- "Mr. Busy" is not his nickname for nothing! He is also to the point of saying, "yes", when I ask him if he would like to go get medicine in his boo boo (such an easy going little guy). His favorite things to do during his infusion are watch, Disney's "Cars", eat peanut butter and jelly sandwiches and thankfully, take a nap. After tomorrows infusion we will attending a meeting with a "Top Doc" in the MPS field. This doctor is flying down from Oakland, CA. He will be adding Trey to their clinical surveillance program. We have blood and urine frozen from just before Trey's very first infusion and will be collecting both again after 6 months of infusions to determine how well the medicine is working in Trey's body. Mike and I are so excited and have a million and one questions ready for this doctor.

Drake and Broc are out of school but when they were in school we were lucky enough to wait as a family for their bus, see them off, head to the hospital and be home just in time to meet the bus after their school day ended. We are so thankful that Drake and Broc's lives we unaffected by Trey's infusion day's during the school year. Since they have been out of school, the boys have been busy with their Grandparents on infusion day's. Keeping them busy and their minds off what they know as Trey's "doctor appointments" has been our goal...so far so good. We are so lucky the boys have such great Grandparents!

"Vegas nights" was a blast but as of today we have still yet to know the benefits of the night's fundraiser as they are still obtaining corporate sponsorships from the event.

The Memorial Day golf tournament BBQ (in memory of my little brother's girlfriend, Stephanie's father, benefiting Treys Treasures) was an amazing day. These people were so passionate about helping a little guy they had never even met. I was so moved by the love and support, the effort and all the hard work that went into such a fun and successful event. We are also very excited about getting the money that was raised that day to be matched by Stephanie's mother, Lindas' bank. This money will be given to the MPS Society in Trey's name to benefit MPS VI.

We have been given the honor by Mr. James Neal to sell his Red Hawk watermelons at the Tempe Town Lake Fourth of July celebration. James has donated 200+ watermelons for us to sell at a "suggested donation" price and has offered 100% of the proceeds go to Trey. We are so excited to have meet James at "Vegas nights" and are extremely thankful to him for setting up this fundraiser. If you happen to be at the Tempe town lake on the 4th, please come by and enjoy a cool, refreshing, juicy slice of watermelon.

Mike is still in contact with his coworker Mr. Dan Masters who is in the process of setting up a benefit dinner auction at the Tempe Mission Palms to take place this August. We will keep you posted on this event. Dan mentioned that he wanted to put on this benefit for Trey and to have those of us who may not golf or who weren't able to make it into Trey's Treasures 1st Annual tournament as another event to help us "fight this fight".

Mike's dad, John had worked the Nascar race as a concession volunteer for the Air Force Academy parents Club and had mentioned what a super fundraiser this would be for Trey (their booth raised $10,000 that weekend!). After making contact with the concession supervisor, Mr. Dan Hudalla, we have been given a "green light" to staff a booth(s) for this Novembers event. We are looking for volunteers for help us in the concession booth for the weekend of November 7th - 9th (possibly Nov. 6th too, if we can find enough people). Again the proceeds from this event will be given in Trey's name to the MPS Society to go towards research for MPS VI. Please let me know if you think you may be free to help.

I had a wonderful conversation with Miss Tammy at the MPS Society and she informed me that once the MPS VI fund reaches $40,000, a grant will be awarded to a researcher specifically doing research in the field of MPS VI. The scientific advisory board, made up of doctors, scientists and parents of the MPS Society will determine the best grant possible. I was also told that we will be able to use their tax id number for all of our events. I'm sure you can imagine how excited to hear that every time we reach $40,000 a new grant will be awarded and that through all our hard work we will be able to contribute first hand by giving the scientists and doctors the financial backing needed to hopefully discovering better treatments and possibly even finding a cure for our baby Trey and the other patients of MPS VI.

Introducing, Master Trey Lane, the new face of "Hope Kids". Yes, Trey is now officially a "Hope Kid" -his face alone (just wait until they get to meet him) made such an impact on the owner/president that he will be honoring Trey as the feature story in next months newsletter. This organization is so amazing, just check out their web site (www.HopeKids.org) ! So far we are going to Robosaurus at Firebird raceway and the Circus at the US Airways Center. The best part about this concept is that the entire family is invited to all events and it's free! Drake and Broc are so excited ...to take the focus off of Trey and his doctor's appointments and to have the focus be on what cool event they we be invited to next has eased the pain that weighs so heavy on mine and Mike's hearts. We try to keep their lives as "normal" as we possibly can (what ever that is anymore)what a blessing Hope Kids will be in easing that pain!

Thank you again and again to all of you who have brought us dinners on infusion days! These days are both mentally and physically draining for all of us. We are so blessed to have our Thursdays filled through the end of August! And thank you Nicole for introducing the "Dinner Brigade" concept ...it has been a God send!

We have come to realize that there just aren't people walking miles and wearing ribbons for MPS as it is such an extremely rare disorder. BUT...we CAN make a difference in Trey's life by having fundraisers and in turn donating the money to research to advance this field of lysosomal storage diseases. We can't begin to thank all of you enough for helping us "fight this fight" for Trey and giving us the hope that one day all our efforts will result in the rewriting of the MPS litterateur for it to currently read "a life threatening genetic disorder" to someday because of all of our efforts it reading "a curable disease" !

XOXO,

Cami, Mike, Drake, Broc and Trey Lane

p.s. check out the face that made "Hope Kids" fall for Trey in the attached pictures (you can see his port in the picture of the three boys in the bath)

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WHAT IS MPS?

Mucopolysaccharidoses (MPS) is a genetic lysosomal storage disease caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.

WHAT IS MPS IVA?

Mucopolysaccharidosis IVA (MPS IVA, also known as Morquio A Syndrome) is a disorder characterized by deficient activity of N-acetylgalactosamine 6-sulfatase (GALNS) causing excessive lysosomal storage of keratan sulfate (KS). This excessive storage causes a systemic skeletal dysplasia, short stature, and joint abnormalities, which limit mobility and endurance. Malformation of the thorax as well as macrophage dysfunction in the lung likely impairs respiratory function and contributes to sinopulmonary infections. Odontoid dysplasia and ligamentous laxity can commonly cause cervical spinal instability and potentially spinal cord compression. Other symptoms may include recurrent infections, hearing loss, corneal clouding, and heart valvular disease. Initial symptoms often become evident in the first five years of life. Depending on severity of the disorder, age of diagnosis will vary. Many patients become wheelchair dependent in their second decade of life and undergo numerous surgeries to alleviate life-threatening conditions caused by the underlying enzyme deficiency.

The incidence estimates for MPS IVA vary widely, between one in 200,000 live births to one in 300,000 live births. Approximately 400 patients worldwide have been identified and tracked through the International Morquio Organization (IMO) survey. There are already more MPS IVA patients identified through this registry than there are MPS VI patients being treated with Naglazyme worldwide. Based on the number of identified patients to date, the prevalence of patients with MPS IVA appears similar to that with MPS I.

Quotes that INSPIRE

"Life isn't about waiting for the storm to pass. It's about learning to dance in the rain."

“The Will of God will never take you where the Grace of God will not protect you”

When God leads you to the edge of the cliff, trust Him fully and let go, only 1 of 2 things will happen, either He'll catch you when you fall, or He'll teach you how to fly!

Life may not be the party we hoped for, but while we are here we might as well dance!

May your Troubles be less,

Your blessings be more,

And Nothing but Happiness

come through your door.

Our suffering can make us more sensitive servants of God. People who have known pain are able to reach out with compassion to others who hurt. If you have suffered, ask God how your experience can be used to help others.

Beautiful One,
Just Believe...

Waiting may be the single hardest thing we have to do. In the Bible, waiting is closely associated with faith. Sometimes the words are used interchangeably. While we may not like it, waiting is a necessary part of the Christian life. What God does in us while we wait is as important as what it is we are waiting for. Waiting is not easy. It may bring pain. It will try us and test us. It demands patience. It exacts a price…

When our eyes are on the sunshine, the rain doesn't seem so bad. When our eyes are on the rain, even the smallest drop seems like a storm.

THE POWER OF PRAYER. I believe that God only gives three answers to prayer:

1. "Yes!"
2. "Not yet."
3. "I have something better in mind."

God still sits on the throne.You may be going through a tough time right now but God is getting ready to bless you in a way that you cannot imagine.

Life is too short to wake up with regrets.. So love
the people who treat you right.. Forget about the
ones who don't. Believe everything happens for a reason. If you
get a second chance, grab it with both hands. If it changes your life, let it. Nobody said life would be easy, they just promised it would be worth it.

Still wondering why I’m here

Still wrestling with my fear

But, Oh, He’s up to something

And farther out I go

I’ve seen enough to know

That I’m not here for nothing…He’s up to something

My wish for you

Where there is pain,

I wish you peace and mercy.

Where there is self doubting,

I wish you a renewed confidence in your ability to work through it.

Where there is tiredness, or exhaustion,

I wish you understanding, patience and renewed strength.

Where there is fear,

I wish you love and courage.

peace.

it does not mean to be in a place

where there is no noise, trouble,

or hard work. It means to be in

the midst of those things and still

be calm in your heart.

WITH THIS PAIN

I don’t see the reason or rhyme

for this mountain I must climb.

Father, I don’t understand,

so I’ll lay it in your hand.

So with this pain I am feeling now,

to your wisdom I will bow.

And accept you know what’s best,

so in your peace I can rest.

For the Word has made it clear,

how we’ll always find you near.

So all I ever need to know

is that with me you will go.

The Ultimate Quote of the Day

"Whatever you give a woman, she will make greater. If you give her sperm, she'll give you a baby. If you give her a house, she'll give you a home. If you give her groceries, she'll give you a meal. If you give her a smile, she'll give you her heart. She multiplies and enlarges what is given to her. So, if you give her any crap, be ready to receive a ton of %$*&^."

AMEN!

HAPPY MOTHERS DAY

O Sovereign LORD! You have made the heavens and earth by your great power. Nothing is too hard for you! Jeremiah 32:17

When is the last time you prayed for something "impossible"? We don't need to test God, but he does want us to have great hope in his ability to work miracles. So pray big today.

"No matter how deep the pit, God is deeper still."

Rejoice?? Are you kidding??

I don't know about you, but I would much rather grow and gain maturity by watching a video, attending a conference, reading an inspiring book... anything but trials and testing.
But the truth is that real, pure, deep joy is the fruit of tested and patient faith. The ability to rest when the wind picks up around us comes from having already been through a few storms. Joy is not the first word that comes to mind in the midst of trials. But God promises us strength and He promises to help us get through it. He is indeed perfecting our faith and that alone is reason enough to rejoice!

Wait patiently for the LORD. Be brave and courageous. Yes, wait patiently for the LORD. Psalm 27:14

Sometimes our fears creep in because it seems like God is taking too long to answer us. Is he out there? Hold on--he will answer you, so you must trust him while you wait.

Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world. John 16:33

God doesn't promise to protect us from problems on this earth. Instead he promises to give us the courage to face our problems with his strength.

If it were easy I would never depend on the Lord.

When darkness overtakes the godly, light will come bursting in. They are generous, compassionate, and righteous. Psalm 112:4

When you belong to God, there is no need to be afraid of dark times that may sweep over you. For God is our sun, our light to guide us through to the end.

It's amazing how the good things of today become when you are unsure of the things of tomorrow.

What good would it be if we felt pain each day but never learned from it? And what good would it be if we sailed through life without experiencing the joy that comes after the sorrow?

There can be no growth of character and depth of personality if our lives were perfect. Experience, and everything that comes with that - fear, failure, success, confidence, sorrow, joy - is what builds our heart and deepens our soul. We learn to move beyond our pain and sorrow to grow in areas and directions we would never have imagined.

And we learn to trust God and stand on His word that says, "weeping may last through the night, but joy comes in the morning."

Life is confusing. It can be hard to know which way to go on the pathway of life. Thankfully, God offers us his wise leading and counsel, so we don't need to be anxious.

Because I was small and weak

Jesus stooped down to me

and in secret taught me

the marvels of His love.

-St. Therese