Monday, November 15, 2010

Light the Night


The Light the Night Walk was wonderful. We were so proud to see CJ walk as a survivor. We are continually amazed at his strength physically and spiritually. I was so proud of him and so unbelievably grateful to be there celebrating his recovery.

There was a lot of excitement and it felt totally different than the first, or even the second year, we attended this walk. Coming as a survivor off chemotherapy is a huge difference. I can honestly say we were in a celebratory mood as it seemed many were that night.

However, when the "Remembrance Ceremony" began my mood changed immensely. The music was turned off and all the families who were there to honor and remember lost loved ones were lead behind the stage for a quiet ceremony. I was suddenly overwhelmed with emotion as I realized I was on the other side of the stage where all the laughing and celebrating and excitement was taking place. We were not lighting candles and holding flowers in memory of CJ but celebrating his healing this side of heaven. I went over to Chris and asked him to pray with me. I know the families on the other side of the stage were shedding tears and I shed a few myself but they were tears of gratefulness.

Eventually, the official ceremony began and Mr. Yormark, COO of the Fl Panthers, who was the chair person for the Light the Night walk was called up to speak. We were amazed and deeply touched at the words he shared about how knowing CJ had affected him and his dedication to help support this research. I am going to find a way to post the video of his speech. It was such a blessing to our family.

For all of you who missed it and are dying to know what the surprise was.....Mr. Yormark presented CJ and the other Honored Hero with 4 season tickets to the Fl Panthers game for the next 5 years. Yes, you read that right. We were all a little shocked to.

When it was announced, Mr. Yormark said "4 tickets for CJ and his family" and I think CJ got so excited he missed the five year part. When he came off the stage I said, "Can you believe that? Season tickets for 5 years!" His eyes got real big and he said, "Five years? I did not realize it was that long."

Then , in classic CJ style he looked at me seriously and said, "But mom, he said 4 tickets. I could not leave my brother or sister out." If you know CJ or have read this blog for any length of time, you know this would be his first concern. He would sooner not accept them before he would leave his family out. He is an amazing kid. And I knew that would be his first thought. After he spoke with his "gir" at the Fl Panthers and as soon as he wasn't worried about leaving anyone out. off we went for the official walk through the park.

I have posted several pictures of the walk below for those who could not be there and this is a link to the Light the Night Official Photos. They have some great shots as well.

LIGHT THE NIGHT OFFICIAL PHOTOS

Once again, I want to thank everyone who has supported CJ these past two years. Those who have prayed first and foremost. Your prayers are more valuable to us than gold. For those who supported our family in friendship and encouragement. For those who have donated or supported CBC as we grow this foundation to support other families.

We really want to deeply and sincerely thank Mr. Michael Yormark, Heidi Leigh, Darren Perry, Rachael Brooke, Matt, and Stanley Panther of the Florida Panthers. Your kindness to CJ these past few months has been an incredible blessing and truly has helped him get through this hurdle of the end of treatment.

I also want to once again thank Peter Kahn who was so generous to CJ at the end of his treatment. Our day at Dave and Busters is still talked about and very appreciated.


TEAM CJ


Daddy


Adam and Emily



Friends

Melinda and David

Way to go Team CJ!


CJ with the St Thomas Aquinas Marching Band

CJ and his girl Heidi


Walking as a SURVIVOR!


CJ and Mr and Mrs Michael Yormark


CJ and Sheriann


CJ cutting off Kristi's bracelet

Grandma and Poppa

Thursday, November 11, 2010

SURVIVOR


You know how certain moments get etched in your brain as if time freezes and all the details become frozen and you know you will never forget it as long as you live? You find yourself replaying and replaying it and can even feel some portion of the flood of emotions you felt when it first happened. Obviously, I have collected a lot of those 'moments' in the past two years walking through this journey with CJ as he has battled childhood cancer. This is one of those memories that I get the rare opportunity to relive and possibly even replace to some degree.

Two years ago, we were told CJ had stage 3 Lymphoma, an aggressive blood cancer. We walked through the fog of biopsies, diagnosis, surgery, and the first devastating days of chemo. One month later we attended our first Light the Night Walk for the Leukemia and Lymphoma Society, not really fully understanding why we felt the need to be there so 'soon' after diagnosis,and still unsure of the long term survival of our son. I will never forget walking up to the check in table and giving them CJ's name. The gentleman behind the table handed me a shirt for CJ. I held it up and the first thing I saw was the word SURVIVOR in big bold letters plastered across the back. Time froze! I stared at it choking back tears. I thought there must be some mistake and they misunderstood that we were just diagnosed about 5 weeks before.

Everything was still moving all around me. Sights, sounds, smells, people everywhere. But I was frozen in time and that shirt and word did not move. Before I could compose myself and get past the lump in my throat to explain that there was some mistake, I suddenly realized that they considered anyone who has cancer and is still 'alive' to any degree a survivor. What else would they wear? "Hopeful to Survive" I guess I was hoping for WARRIOR or maybe even VICTIM would have felt more appropriate as to how we felt.

To be honest, the word SURVIVOR was a little crushing. Somehow it sapped my hope and I felt like we had no right to wear it yet. I felt like it was a pity thing as if they knew there was no way CJ would be alive two years from now so if he is ever going to get to wear it we better take advantage of it. Of course I know now that I completely misunderstood the mission and knowledge of LLS at the time and I certainly misunderstood the wisdom of God in having us wear it. All I knew then was that I wanted CJ to be a real survivor when he wore that shirt. I wanted it to mean something more than 'I am just hanging on for my life here and hoping to get to wear this shirt again next year'.

Praise God....he did get to wear it the following year. By then we were a full year into chemo. Veterans by most standards. But survivor was still not how we felt about our experience. After all, we still had a full year of chemotherapy to go and we knew what that could bring. But without an alternative, he donned the SURVIVOR shirt again and we took our lap with our balloons held high. I admit it was a lot easier than the first year and we were more focused on comforting others around us who were the new 'hopeful' just as we were a year ago, but we still did not feel like 'survivors'.

BUT.......This Saturday evening, CJ will walk in the Light the Night walk for his third time. And for the FIRST time since this all began, we will feel like he is a TRUE SURVIVOR. He has now completed two years of chemotherapy. We just received word that his CT Scans and PET scans are CLEAR!!!! No Evidence of Disease!!! The coveted NED!!!

Not only will he walk as a SURVIVOR but he is also the Honored Hero for Light the Night's Broward Walk this year. A double blessing.

I can't wait for them to hand me that shirt this year. I can't wait to watch him walk with the word SURVIVOR plastered across his back with his white survivors balloon held high.

CJ may be the Honored Hero of the Night but we have one true hero. When we take that lap and look up at the balloons, we will ultimately look past them and our gaze will land on the Host of the Heavens. Our Lord and our Savior Jesus Christ.....

"Not to us, O Lord, not to us but to your name be the glory, because of your love and faithfulness."
(Psalm 115:1)

Thank you to everyone who has supported us these past two years. We are so grateful for your kindness, patience, encouragement but most of all your prayers! They are of eternal value to us. We still feel as we did that very first day we posted a blog begging for prayer.....like we don't deserve it and we haven't been faithful enough in prayer to ask for others to pray for us. But we are so grateful you did!

We invite all of you who can attend the walk to come out and join us and take CJ's end of chemo victory lap with him! The walk is this Saturday at 5pm at the Huizenga Plaza on Las Olas in Ft Lauderdale. (Please note the new location for anyone who has previously attended the other walks)
CJ will be honored and speaking at 5:15pm during the opening ceremonies. We are extremely proud and grateful to the Lord for his healing and we want to share this moment with all of you!

I am copying and pasting all the details we were sent regarding the walk below. If you have any further questions please feel free to contact me at 305-986-5618 (Dawn)

Light the Night Saturday November 13th
Huizenga Plaza is located at 32 E. Las Olas Blvd., Fort Lauderdale, FL 33301. Map!

  • Parking is available at the city garage across the street from the park off 2nd Avenue. You must pre-pay the meter. $1/hr (this should only cost you 2-3 dollars total for the night)
  • Balloons - One wristband = one balloon. Walkers who raised 100.00 will receive a wristband entitling them to a t shirt, balloon and food. (Note: you don't need to have raised the 100.00 to attend the walk. We invite you out to support CJ no matter if you registered or not! You can however make a donation that night if you would like to.
  • Walk Program begins at approximately 5:15 pm. The actual walk will begin immediately following the program.
  • The Walk route is under 1 mile. We will walk along the New River and turn around back to Huizenga Plaza via E. Las Olas Blvd.
  • Children's Village opens at 4:00 pm: Florida Panthers Bounce House, Stanley the Panther, 3-in-1 Bounce House & Slide, face painting by Miss Pidazzle, cotton candy, snow cones, popcorn, and coloring tables. There will also be many children's games. (If you have children, we recommend coming out early and enjoying the festivities. (We will personally be there by 4pm)