FW: Joy's Journal

Joy's Journal Friday, September 30, 2011   For my journal entry this time, I wanted to write a letter to Connor to commemorate his 11th birthday. I wanted to share this letter with MacKenzie, Carson and Mason to help remember Connor on his special day.   Dear Connor,   It's your birthday this Sunday and your third birthday in heaven. Happy 11th birthday!  I can't imagine how fantastic your birthday celebration is in heaven, or maybe everyday is like a celebration there. We will be thinking of you and missing you on your special day.   We can't even imagine what your days are like in heaven. We continue to keep up the good fight down here. Mackenzie is growing up into a beautiful, mature, independent young lady. I remember the days when she used to dress you in her princess costumes. Mason remembers you often.  He says  "I miss Connor. He was such a good brother. He loved me". What a blessing from God that he still remembers you, especially since he was only three when you went to heaven.  Carson really had the hardest time dealing with your absence, but I know that God is slowly moving him through his grief.   God is also carrying your dad and me. I can't imagine getting through one day of this without Him.   We are trying to make the best of the situation - believing the promise "all things work together for good to those who love Him and are called according to his purpose". Romans 8:28. We are growing TeamConnor to continue your legacy and try to make your wish come true - that know other child would have to go through what you did. We introduced Connor the caterpillar to hopefully someday be the national icon for childhood cancer to raise awareness. We will be releasing our devotional book and Your Childrens book next year. We want to spread God's message of hope to so many. We pray that God would bless all of these endeavors.   The other day, I was listening to the song "The Words I Would Say" by Sidewalk Prophets. The words echoed what my heart wanted to say to you. If I could go back in time and I had you again for a moment on May 15, 2005 (diagnosis day), these are the words I would say.   Be strong in the Lord And never give up hope You're gonna do great things I already know God's got His hands on you So don't live life in fear Forgive and forget But don't forget why you're here Take your time and pray And thank God for each day His love will find a way These are the words I would say   The funny thing is - I think you already knew all this. The way you lived your life exemplified this. I'm still in awe at how you journeyed so well, son. We live each day trying to honor your memory as we keep walking with God and sharing your story of hope with others.  Hope you're proud of us.   Always believing,   Mom

New Identity for Childhood Cancer Unveiled

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NEW IDENTITY FOR CHILDHOOD CANCER UNVEILED TO BRING MORE AWARENESS AND FUNDS TO CAUSE   DALLAS (September 15, 2011) - An eight-year-old Texas boy who lost his four-year battle with cancer has inspired the creation of a new national icon for childhood cancer.  Connor the Caterpillar, unveiled in Dallas today during National Childhood Cancer Awareness Month, was developed by the non-profit organization TeamConnor Childhood Cancer Foundation (beatchildcancer.org) after Connor Cruse succumbed to neuroblastoma in 2009. "This is a historical day for the fight against childhood cancer," said Joy Cruse, mother of Connor and founder of TeamConnor Childhood Cancer Foundation. "Beginning today, we are aggressively moving the childhood cancer conversation outside of the cancer community. Children should not have to endure cancer and they should never be subjected to drugs and protocols that are meant for treating adults. We need more dialogue about childhood cancer and a kid-friendly image is a new beginning to increase awareness." Carolyn Alvey and Joy Cruse unveil "Connor the Caterpillar," the new icon for National Childhood Cancer Awareness at III Forks Restaurant in Dallas September 15, 2011. TeamConnor paired up with the Dallas-based ad agency LOOMIS (theloomisagency.com) to create a singular icon to represent childhood cancer. Loomis created the icon on a pro bono basis for the charity. The creation of this national icon gives childhood cancer a common voice that has been missing from the cause.   "The previous mark for childhood cancer was a generic gold ribbon," said Carolyn Alvey, TeamConnor board member.  "We set out to create an image that affirms children are the center of our cause. Children can relate to the caterpillar and so can adults. The color green is significant because it represents perseverance, patience, growth and healing.  For a child to win the war against cancer, they must go through each of these stages. Caterpillars grow up, spread their wings and fly. This is the essence of what parents envision for their children."  Childhood cancer is the number one disease killer of children in our country, yet only 3% of the National Cancer Institute's budget is allocated to childhood cancer research.  The current treatments are so toxic to a child they can cause lifelong disabilities. 13-year-old cancer patient Hanna Waters of Richardson gives Connor the Caterpillar two thumbs up.  "This was an eye opening experience for our entire team," said Mike Sullivan, president of Loomis. "Before we began working on this project, we were not aware how poorly funded childhood cancer is in our country. We hope the visibility this new identity generates will play a big role in more dollars being donated by the consumer and business community to the cause." Funding More Research Funding new research is the biggest priority in the battle to find newtreatments and ultimately cures for childhood cancers.  TeamConnor has three research projects underway and would like to expand the research among the 12 childhood cancer types. Tax-deductible donations can be made directly to TeamConnor Childhood Cancer Foundation, 12221 Merit Drive,Suite 1500 Dallas, TX 75251. For those who want to involve their communities, TeamConnor's Coins for Kids with Cancer is a fundraising program that can easily be implemented.  The community service program teaches kids about helping others while collecting coins to aid in childhood cancer research. More information about the program can be found at www.beatchildcancer.org.  Jennifer Bolton, TeamConnor executive director; Mike Sullivan, president, LOOMIS; 13-year-old cancer patient Hanna Waters of Richardson; and Joy Cruse, TeamConnor founder TeamConnor Dallas-based TeamConnor was founded in 2008 while Connor Cruse was battling neuroblastoma, a malignant tumor usually found in the adrenal gland that most often affects young children and spreads quickly. TeamConnor is currently funding three research projects at the top medical facilities in the country, including University of California San Francisco Benioff Children's Hospital, Memorial Sloan- Kettering in New York, and MD Anderson Cancer Center in Houston.      Loomis Agency Dallas-based LOOMIS is a full-service advertising agency specializing in discovering and leveraging strategic advantages for challenger brands competing against category dominators. The agency's expertise extends across multiple retail categories, and includes mid-market restaurant chains, home services companies, banking and financial institutions, apparel, beverages, and more. Click below to see the story on WFAA Channel 8.   If you want to help, you can change your Facebook profile to feature "Connor the Caterpillar" to recognize National Childhood Cancer Awareness Month.  Email jbolton@teamconnor.org for the image.   You can also "Like" the two facebook pages below - National Childhood Cancer Awareness and TeamConnor Cancer Foundation. TeamConnor Childhood Cancer Foundation 12221 Merit Drive, Suite 1500 Dallas, Texas 75251 O: 972-663-7327 F: 972-663-7298 jbolton@teamconnor.org   TeamConnor Childhood Cancer Foundation    National Childhood Cancer Awareness

Have you visited the Lord Lately?

Prayer Warriors-  Have you spoken with the Lord today?  Have you take time out to listen to the Lord today?

Odd questions, but for us there is conviction from the Lord to ask.  Many of you know that Princess has had a wonderful 10 weeks of reprieve from her seizures.  She has been able to have great time with Critter.  Enjoy time coming up with creations in the kitchen.  Now although she was not entirely seizure-free as she was still having multiple auras, she none the less had amazing energy and overall, felt good!  Being off the Ketogenic Diet has even been nice as we have averaged eating out at Freebirds about twice per week!

However, last week something literally changed and the auras intensified.  Then, increased in number.  Lasted longer in duration.  Were more seizure-like...  The seizures were back.  Princess has seen the power of prayer throughout these 5 years of our life and again, we're calling on our faithful friends, brothers, sisters....Prayer Warriors.  When we call on the Lord's name, He is faithful to hear us. 

So we are asking for your support, yet again.  Please pray.  Today, Princess has had 6 seizures.  It has been a rough day.  She felt like the Lord was wanting us to post this as maybe it will be a reminder for one of you who are followers of the Foxhole to talk to the Lord if you haven't today?  Maybe it's time for one of you to visit with the Lord for the first time in a week.  Or maybe you read the good news of Princess' restoration, and haven't reached out to the Lord beyond that.

Our lives are for God's glory.  In sickness and in health we believe this.  So while we don't quite understand days like today, we do know that God is faithful and loves to hear us call upon His name. 

So have you visited with the Lord lately?  And when you do, if you wouldn't mind lifting up an amazing woman who despite life's many curve balls, continues to choose joy in the midst of struggle.

Thank you.

2 Chronicles 7:14

Prayer Warriors

I'm sorry that I've not updated much on me...little Miss P is so much cuter...

I haven't felt that the Lord has said I could proclaim complete healing yet.  As much as I want to, I haven't felt HIM say, "tell the world!"

²⁸ When he had gone indoors, the blind men came to him, and he asked them, “Do you believe that I am able to do this?”

   “Yes, Lord,” they replied.

 ²⁹ Then he touched their eyes and said, “According to your faith let it be done to you”; ³⁰ and their sight was restored. Jesus warned them sternly, “See that no one knows about this.” ³¹ But they went out and spread the news about him all over that region. 

Matthew 9:28-31

I have continued to have auras.  By definition, they are still seizures.  However, the Mayo Clinic said I could count them separately since I can keep my eyes open and I'm not as tired when they are over...thus, they measure auras only as a sign of improvement.

Last month, I only had 33 for the entire month (and NO "seizures").  This month, I'm already at 32 and we're only half way through...I had eight yesterday and I've already had two this morning.  Just a few auras and I still have basic energy.  A day like yesterday and I'm completely spent.

We went to see my neurologist last week and she's just as stumped as to why I stopped having seizures.  Again, we praise the LORD for that healing!!!!

However, it also leaves her not knowing how to get rid of these auras.  Obviously, prayer and complete reliance on the Father is the first step.

“Again I say to you, if two of you agree on earth about anything they ask, it will be done for them by my Father in heaven. For where two or three are gathered in my name, there am I among them.” (ESV)

Matthew 18:19-20

We are also trying to decide if I start the IVIG again.  The last time I did it, the seizures went crazy.  However, we found that it was rendering the diet useless due to the proteins in the treatment.  So, now that I am on low dose meds (lowest dose I've ever been on without the Ketogenic Diet), in theory, there is something to help with control...The doc also said that the seizures could come back if we start the treatment again.

So, we are stumped.  We are trying to hear the Lord and walk in the direction that HE leads, not what makes the most sense to us. 

The sweet lady helping us with Miss P came later yesterday which gave me a chance to hang with Miss P by myself.  I loved that special Mommy/Daughter time.  However, I had one sitting at the desk with her in my arms and I couldn't set her down in enough time.  So, I had to just lean over to make sure she didn't fall.  She cried the whole time, which made it last longer.  It is so frustrating...I just want to be healed so that I can be her Mommy with no fears attached.

Sorry for the long post...Please just continue joining us in prayer for HIS ultimate healing, HIS will to be done, and peace and direction through the process!!

You are each such precious gifts to us!  Thank you for your sacrifice of time to beseech HIM on our behalf!

First Trip to Aggieland

P got to make her first trip to Aggieland a few weeks ago!!

B had some clients to meet in College Station.  So, we made it a family trip.  We stayed with our precious friend Trey & Marci in their adorable home!  It's like a perfect little doll house!  I wish I had taken pictures, but I completely forgot...they were so wonderful to allow us to stay with them.

P & Daddy posing with Bevo!

First Trip to Freebird's!!

You expect me to eat this whole thing?!

This is where my Daddy proposed to my Mommy!!

Mommy and Daddy in the spot where Daddy proposed!  I'm glad she said, "Yes!"

Piper's business

You've got to each take the time to go to Piper's facebook page and see how talented she is...

Piper made all of Miss P's bedding and is making curtains for her so that we can take down the trash bags that we're currently using as curtains!  I have posted a few pics below that I took, but if you go to her facebook page, there are so many more fun and precious things to look at that she's made. 

She is going to start a little business and would make such precious gifts for you and your family!!

Go to Facebook:  Piper Chambers Cole: Photos:
then,
*Burp Rags & Bibs
*Miscellaneous
*Baby Bedding
*Blankets & Quilts

She is so talented and creative!!  If you want to order from her, tell her that I sent you and send an e-mail to:  mustardseeddreams@hotmail.com

P's Bedding that Piper made for her.

Have to quickly brag on my hubby...

 This was an old entertainment center that B repainted and then used to create a changing station for Miss P.  Didn't he do a wonderful job?  It matches her bedding so well.  He's so talented and amazing!  I sure love that man!!!

Brandon

This is Brandon.  He is an amazing young man that attends our church.

This is his story: Brandon's Story

What happened...
Brandon has loved on Miss P since very early on...

Snuggling with Brandon

So sweet!!!

Here are some more recent pics.  I think these were taken last month.

Mr. Brandon, what is this in your neck? Maybe I'll be a doctor someday!!

Have y'all met my friend, Brandon?

First Trip

When little Miss P was just a few weeks old, she got to take her first trip.  B has some clients in Texarkana and it was going to be an overnight trip.  So that we weren't home by ourselves, we went with Daddy to work!!!

This is the luggage cart with all of our stuff.  Prior to P, we didn't need a luggage cart, once suitcase did the trick.

Do you really need this much stuff for a kiddo?

Do you really need this much stuff for a kiddo?

As many of you know, Rotary holds a very special place in my heart.  It started with Camp RYLA, progressed to college scholarships, and even my Dad!  Yep, the director of Camp RYLA is the man that walked me down to the aisle to my hubby!!!

So, while in Texarkana, we went to their Rotary Club Meeting!

P's first Rotary Meeting!!!

Hangin'

These are old pictures, but I'm that far behind...I'm going to try to catch up on postings....

Hangin' with Aunt L & Uncle B

THE END

Not of this blog, not of this story, but of this chapter...

We have said since early on in this story that we wanted God to be the hero of this story.  It is our prayer that that has been the case.  This is the link to the post we did in October of 2008 talking about God being the hero of this story!  Scroll to the bottom, past all of the pics to get to that part of the post.

I've wondered through all of this how in the world HE could perform a miracle of healing.  I definitely wanted it, but just didn't understand how HE would do it.  I guess that's the point, huh?

Trust in the Lord with all your heart;

Lean not on your own understanding.

In all your ways acknowledge HIM,

and He will direct your paths.

Proverbs 3:5-6

So, my last seizure was last Tuesday at 7:15pm!!!!!!  That means that as I type this, I have gone more than ten days without a seizure!!  Thank you, LORD, for your miraculous healing!!

For, lo, the winter is past,

the rain is over and gone;

the flowers appear on the earth;

the time of the singing of birds is come. 

Song of Solomon 2:11-12

The short version of the story is that I was having way too many seizures on Tuesday despite having taken two rescue meds.

*The doc said to hurry and get to the hospital.

*She started me on IV meds (which have always calmed the seizures, but I've still had what I refer to as auras-according to the docs, these are still seizures).  Every time that I have switched from IV meds to oral meds, the seizures come back full speed ahead (more than 3 a day is my average on meds).  On the diet alone (no meds), I was having around 1.5/day.  She felt there were a few more risky treatments we could look at in the future, but I had to be off the diet as they would interact.

*Last seizure was Tuesday at 7:15pm.

*My wonderful and super impressive doc said that if this didn't work, she didn't have anything else she could do...we were out of options.

*The next day we asked our doc if we could all pray together about what the next decision should be...this is when she prescribed sushi (a.k.a. getting off the Ketogenic Diet).

*I couldn't go home on IV meds and so our amazing compounding pharmacist out here worked for hours with the pharmacy at Baylor to create a version of the med that he thought I might absorb...

*I was on this for a few days (the lowest dose I've ever been on of this med) with no seizures.  I even forgot a dose my first night at home.

So ALL PRAISE TO GOD who is our Great Physician!!  He truly has performed a miracle and is continuing to answer many prayers.  We have done nothing, yet HE has healed me!!  We are claiming it and rejoicing in HIS healing!!!

This past weekend I was able to get to be a Mommy to our sweet little girl.  It was amazing!!!  Having my precious baby girl snuggle up in my arms...WOW!!!  When she has cried, I've been able to comfort her...

It has truly been an unbelievable week being able to bake different items (and eat them), make meals for B, NOT weigh my food, not worry about staying away from certain foods...I had Blue Bell Ice Cream and chocolate chip cookies for the first time in almost three years!!!!  So while there was some apprehension at first, maybe even a slight wondering if God had truly healed me, each day we keep putting our trust in God that He is in ultimate control and TODAY I have been healed!  ALL Praise to HIM!!!

We are so grateful for the many faithful prayer warriors that have helped us to fight this battle that has lasted five plus years!  Your prayers, emails, letters, and calls have meant so much to us and have encouraged us so much along the way.  We continue to praise the Lord for His sustaining strength and a perseverance that could only come from Him.

May HE always get the glory and be the hero of your story, too!!

Quick Update

The doc just left my room and I should be going home tonight.  My last seizure was at 7:15p the night that we arrived.  We usually have good seizure control on IV meds, but once I switch to the pills, not so much.  Thus, I would have to stay in the hospital so that I had access to the IV meds.
Well, the doc, our wonderful compounding pharmacist in Rockwall, and the pharmacy here at Baylor have made up a liquid version of the med in hopes that I will absorb it better than the pills and have seizure control.

ALL PRAISE TO JESUS, I have taken two doses and still no seizures.  I've almost gone three days without a seizure!!  Thank you, LORD!!!!  So, we are hopeful that I'm healed and that I'll be heading home today!

For whatever reason, we find that if I go more than a day without a seizure, I tend to get a pretty bad migraine.  It arrived yesterday.  So, prayers that it goes away quickly as I want to be able to spend time with little Miss P tonight without it being so painful!

Thank you all for being such faithful prayer warriors!  I know your cries to the Lord are such a sweet sound to HIS ears.  Lord willing, we won't be begging HIM for healing anymore, but praising HIM for HIS healing!!!