Thursday, December 23, 2010

Ponderings of My Heart - Part 2-An Unexpected Parade of Light

What amazes me is how many times we head out to an ordinary event expecting nothing extraordinary, only to encounter God in the most profound ways. I should have known when we were invited to a parade of lights that God was up to something.




CJ was invited to an event which allows the families of pediatric cancer patients and other critical illnesses to watch the Winterfest Boat Parade. The Boat Parade is a literal parade of boats each covered in beautiful lights with music playing as it makes its way through the Ft. Lauderdale water front. Over a million people watch this parade from various locations throughout Ft. Lauderdale. We were invited by the Freedom Waters Foundation to watch the parade at the home of Paul Flanigan, owner of the Quarter Deck restaurants.

When I saw the invitation which read, 'Hosted at the home of Paul Flanigan,' I expected we would be welcome to use his lawn to watch the parade in the beautiful Ft. Lauderdale waterfront neighborhood he lives in. I thought that was extremely generous of Mr. Flanigan. Turns out that my expectations were way off! Let's just say that is not how Paul Flanigan defines 'hosted at the home of.'

We arrived to find his lawn and his home wide open! Come in. Help yourself. Look around. Take pictures by the life size Santa next to the Christmas tree. Admire the gorgeous nativity set on the mantle. Pet our dog. Check out the awesome wall unit that doubles as secret doors to the kids rooms. Play with the train set. Use our bathroom. Sit on our couches. Swim in our pool. Jump on our trampoline. Help yourself! THAT is how Paul Flanigan defines 'hosted at the home of.'

As I walked around pondering all of this in my heart, I was informed that Mr. Flanigan was the gentleman standing at the BBQ pit cooking up some delicious ribs and french fries for the kids. Apparently, Paul Flanigan describes hosted at the home of as cooking for over two hundred people, who are all complete strangers to him, while they wander in and out of his home. In the three or so hours I was there, Mr. Flanigan never left that BBQ pit!

After endless servings of great food, we were then invited to sit on the lawn across the street and watch boat parade. Not only that, but we were told, "Feel free to climb aboard Mr. Flanigan's yacht and watch it from there if you like". There were kids (and adults) continually climbing on and off Mr. Flanigan's boat for an even better view of the boats parading by all covered in lights. Present company not excluded!

I don't know about everyone else that was there, but this all began to hit me really hard. More like a punch in the gut than a pondering of the heart. How many times has someone I invited to my home for a party called and asked, "Can we bring a friend or two?" and I inwardly cringe? How many times have I opened my home to people for an event only to remind them nicely that the party is OUTSIDE? How many times have I gotten frustrated at the mess someones kid left when they were at our house? How many times have I overlooked the eternal for the temporal? How many times have I hurt someones feelings only to protect some lifeless object or save my precious time in cleaning, or worse even......to save money! Ouch! What an example this man set for me! I will never forget it.

Oh yeah, the boat parade....you wonder how it was. Just as expected it was beautiful. Lights were dazzling from the boats and reflecting off the water. Music played continuously from the yachts as they paraded by. But the most beautiful light, the Light of Life, was shining across the street through a man standing at a grill flipping ribs. The most beautiful music of the night was being played as the fire sizzled at his fingertips. The boats were pretty alright, but that is real beauty. I am so glad I didn't miss it.

"In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven."
(Matthew 5:17)



When Jesus spoke again to the people, he said, “I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”
(John 8:12)

Saturday, December 18, 2010

Ponderings of My Heart: Part 1- The Toy Run

This holiday season, CJ was invited to attend three separate events. Each has had huge significance and a deep impact on our family. I wanted to share a little about each of them with you. I think you will be blessed as well. I will share them in three separate postings.

CJ was invited to the annual Fun in the Sun Toy Run that has been held here in South Florida for the past ten years or so. We had never been before, and my understanding of the Toy Run was that a bunch of bikers get together to raise money and donate toys to local charities. Let's just say that is simplifying it a lot.

Joe DiMaggio Children's Hospital is one of the main foundations that benefits from the Toy Run so they invited CJ, along with some other patients, to ride on the Joe D Firetruck this year. Apparently, the other kids had to cancel at the last minute so they extended the invitation to our entire family. This is how I found out how simplified my definition was.

I will admit that we struggled at first with the decision to attend this event. First, because it was being held a Sunday morning. Second, because it is a biker event which tends to be a little ummmm, how should I say it? Well, let's just say the very cold weather was a blessing and helped us feel better about that decision!

Regardless, those are debates we can save for another day and I have changed my stance throughout the years as a Christian on the Sunday morning thing, but I am going to bite my tongue (restrain my fingers) from elaborating further here. Most of you know, I love a good spiritual and theological debate but that is not what this post is about. However, I will confess that some of the times I experience God most clearly and powerfully is when I step outside of my comfort zone and follow what I think is His leading in a strange direction, and this was no exception. How dare Jesus heal on the Sabbath! Sorry, couldn't resist.

We arrived bright and early at the park where the event is held, which was already bustling with people, cars, bikers, and vendors setting up. We were told to be there early to load up and drive to another location to ride in the parade back to this park for the main event. There was a huge line of convertible classic cars there and we were told to pick one and get in. We did not know these people and we quickly realized our entire family was not going to fit into one car together so we ended up breaking up into three different cars. This created a little anxiety right away but we were thankful we could all do this as a family so we started looking for cars to ride in. CJ was alone with a family that was there, Allie and Brett stuck together and found another car, with room for two, and Chris and I took Corey and looked for an available car to get in.

Once we got in, we realized these are truly Classic Cars which means most of them have no seat belts in the back seats. We quickly switched our little Corey to the front seat and Chris and climbed in the back. All we could think of was our other three children in convertible cars with strangers and no seat belts on the highway. We reasoned that the long line of classic cars would be going slow enough so what harm could be done. Wrong! These cars flew from Markham Park to the Pompano Beach meeting area. A 30 to 40 minute drive on all highways! I won't tell you how fast we were going but lets just say tires, hubcaps, gasoline, and a few other things went flying during this early morning stroll. I can guarantee you that Chris and I did more praying that early Sunday morning than we would have if we went to church instead. So you see God was already at work!

To ease our racing hearts and minds, Chris and I made conversation with our driver. He was an elder gentleman who was a Christian from Wisconsin. He obviously loved the Lord and classic cars. He lives in South Florida during the winter months and decided to donate his time, money, and classic car to the event. When he asked about our involvement we shared CJ's story which lead him. He in turn shared with us that his daughter, who is now an adult with her own family, also fought for her life as a child. His story was amazing and he shared how the Lord healed her.

As he spoke, I could just picture Chris and I as an older couple doing something similar. CJ would be off and married with children of his own and we would be driving a classic car with a family in the back that has experienced a child battling a terrible disease. Of course, I snapped back to reality and realized that was only if CJ survived the Toy Run! I remember commenting to Chris something to the effect of how it would stink to for CJ beat cancer and die in the parade that celebrates it.

When we arrived, by God's grace, safely at the starting point of the parade, we found THOUSANDS of bikers already there. This place was an event in and of itself. It was quite a sight.

Eventually, we loaded onto one the firetrucks towards the front of the Parade and headed out followed by MANY large trucks filled with THOUSANDS of donated toys. We were not as worried about the long ride back on top of a firetruck because we knew the roads would be closed for this portion of the event and we would be going at parade speed!

What we did not realize is that this firetruck we were on, is then followed by over 35,000 motorcycles all carrying a toy. Let me say that again....That is over thirty-five THOUSAND motorcycles (mostly Harley Davidsons). It is an amazing sight and sound! We were told the parade was so long it would take over two hours before the last bike got back to the park even though the parade route is only 30 minutes. There were hundreds of people standing on overpasses and along the roads and highways to watch the parade pass by. It was a very neat experience.

However, what was even more amazing was that once we got to the event site and got off the fire truck and were able to really see all these bikers. We were then able to read their jackets which often signify their clubs or gangs. The Pagans.......The Outlaws.....Hell's Angels.....The Mongols...and Bikers for Jesus. You know, stuff like that. Let's just say, I don't usually see that on a typical Sunday morning so I was taking it all in. I did find it ironic that I could either be sitting in church with my fellow Christians, or I could be with The Pagan's and Hell's Angels donating toys to sick kids. Hmmmm!

Now, consider that with the exception of the Bikers for Jesus and some of the others, the above mentioned Bikers are some of the most notorious biker gangs in the world. I am not exaggerating here. Many of them are bitter rivals and yet here they all were side by side and they all had a toy strapped to the back of their big bad motorcycles. I will tell you , there is nothing like seeing The Outlaws or Hell's Angels with a pink Barbie strapped in behind him!

Yet, for that one day something is bigger than any disputes, rivalries, differences, or macho image they may have. That day they are just bikers helping children in need.

Let's just say I pondered it my heart long and hard.









Our little Corey up front while we help on for dear life.

My baby girl and Lotsy

Tuesday, December 14, 2010

The Tree of Life and Death

I posted two blogs back to back here, so please take a minute and read the other one below as well which has a CJ update.

After years of frustration with my Christmas tree and its significance, I was determined to make our tree special this year. So, after much thought, I decided to do it in all gold for childhood cancer. We covered it in gold ornaments and made gold cancer shaped ribbons. Then we wrote the names of the children we have come to know and love on them.

Unfortunately, we ran out of ribbons rather quickly and had to purchase another batch. That should tell you something. There are well over 50 ribbons on my tree and we have only been in this small corner of the childhood cancer world for two years. Sad.

The tree is beautiful. Much more so in person than in pictures but I will share them anyway. Each ribbon represents a child battling cancer! Too many of the names on my tree are no longer with us. That was a shock to me as I started to write the names on the ribbons. They just flowed off my pen, one after the other. Many of them we have met. Some we pray for from afar. We feel a deep connection to them all. We love them. I love my tree because I love them.










These are only some of the ribbons but I wanted to share the overall feel of the tree. There is still Creed, Deana, Abigail, Amanda, Hailey, Zara, Seth, Bella, Ryan, Anthony, Marcus, Andrew, Maisa, Bo, Tyler, Kuke, MGabriel, Avona, Aref, Pharoah, Sammie, Myah, Addison, Angel, Rainy, Lena, Nayali, Nathalie, Victoria, on and on and on......see how easily they come!

As I sit in front of my special tree this year, I can't help but see the names of all the children and reflect on the meaning of Christmas....the gift of life and death. Oh yes! I said the gift of death. You see, on this side of heaven, in our human flesh, we see death from the eyes of the fallen, as a result of a curse, the loss of a loved one, the physical pain of grief, the end of a life. And death certainly is all of those things. But the gift of death is also viewed from the other side of heaven, with a perspective we don't truly have yet. Reunited with our Father in Heaven, death sets us free! It is merciful in that it allows and end to suffering and beginning to life eternal. When we get there, we will view death as a gift rather than a curse. That is the hope we have as Christians anyway, and why we "do not grieve like the rest of mankind, who have no hope". (1Thes 4:13)

And of course the ultimate gift of life and death is that of Jesus Christ which is why we celebrate at Christmas after all. Or you can celebrate Santa and Rudolph I suppose. Whatever you prefer.

God's Economy

It's been a long time since I have updated this blog. No news is good news, right? Typically, that does not apply to me. No news usually means I am probably a garbled emotional mess in my head and heart and afraid to write for the sake of what may come pouring out. I have been told I wear my heart on my sleeve. I have learned it also pours forth from my mouth and have discovered that it has managed to find its way out my fingers as they click away at the keyboard.

Sometimes it means I am just so busy I can not seem to find uninterrupted time to sit and organize my thoughts so that it comes across making some sort of sense.

In regards to CJ though, no news is good news! So let's see if I can guard my heart and maintain tight control over my fingers as I type and at least get you all updated on CJ.

CJ is doing really well physically. He has had some side effects since coming off the chemotherapy but nothing serious. I guess after two years on all that medicine, it is going to take some time for his body to level off. He has developed a blotchy and discolored face which has turned out to be eczema. The doctors have assured me this is a common side effect for kids coming off chemotherapy and it will go away. But every time I look at him it reminds me of the adjustment his little body is making once again and all that he has been through.

Then I came across this picture accidentally last week while looking for another one....



Needless to say, that was a shock I wasn't expecting as I clicked on the link and this opened really large on my screen. I just kept staring at it thinking, Wow, that was only a year ago. I am so thankful CJ got through this. I am so so thankful! Praise God!

Speaking of thankful, I tried to do a Thanksgiving blog update here on Thanksgiving night. I was planning to share how thankful I was and what our day was like and then I sat down at the computer only to read and discover that, while most of us were getting ready to stuff our faces with food on Thanksgiving, a little cancer warrior I followed, who looked much like this picture above....swollen, bald, sick....had passed away. His name was Max. He was only 7. I just sat there and cried at my computer. I felt like I got punched in the gut and could not bring myself to type an update. Although it made me even more thankful that I was able to spend Thanksgiving with CJ who is now healthy, it also made me ashamed of my inner complaining I did about the hustle and bustle of the day and all the work and effort it takes and how glutenous we are and how I feel trapped by tradition. Oh yes! You would hate the inner me if you knew her! She is such a complaining, miserable, brat sometimes. Thankfully, God and I are working diligently and patiently with her.

But, I mean, really? Is that what you would come up with if you had to think of way to spend a day to express your thanks to God? Would you cook a bunch of food that is in abundance anyway and sit around a eat to the point of discomfort? The pilgrims chose feasting because they were starving and saved from the brink of extinction. Believe me, we don't know hunger!

So what would you choose? What has He saved you from the brink of? Bankruptcy? Then maybe you should celebrate Thanksgiving by making a generous donation to a charity or even better...a family on the brink of bankruptcy. Maybe it was the brink of divorce. Well then maybe it would be significant for you to spend Thanksgiving sending a couple you know is struggling on a weekend getaway while you watch their kids. Or maybe it was homelessness. Then maybe you should spend Thanksgiving at a homeless shelter feeding and ministering to the homeless. Maybe it was even death like CJ.
So then maybe Thanksgiving should be spent at the hospital serving other families facing death or at a nursing home where people actually are at the brink of death. If you can't think of anything, I can think of one for you. If you are Christian, you were saved from death to life eternal. So maybe we should spend Thanksgiving sharing the gospel with the lost who are certainly headed there.

See that? See how quickly my heart tries to take over these updates. It is pounding at my fingertips just wanting to have its way on this key board.

Back to CJ! On top of finishing chemo, he just finished his baseball season and they won the championship. It was quite fitting. However, this winning season followed a season that his team lost every single game. This year, they won all but one. Funny thing is, that losing season did more to build his character and appreciate for the game than the winning one ever could have. Defeat sweetens the taste of victory!. But even more than that, I think you need to lose at something to truly win. It's God's economy. Everything is always backwards.

In the championship game, when it came down to very last play for the final out, the ball was hit directly to CJ. He fielded it and made the play for the final out of the game. Champions! Time to celebrate, right? Not for CJ! After making the play, he fell immediately to his knees, looked up and pointed to the Lord privately thanking Him. Then he jumped up and joined all his teammates who were already rushing to infield for the excitement of winning the championship. It was a powerful moment! Sounds simplistic enough right? Typical childhood experience....lots of kids point up after great plays. But that moment in CJ's life followed two years of chemotherapy and the final report of 'clear scans' to officially end his treatment. CJ knows Who he's pointing to. Nothing simplistic about that.

As CJ was on his knees, I immediately flashed back to a week before diagnosis when we were at a church retreat and CJ fell to his knees in desperate prayer asking God to help him with his anxiety and constant back and stomach pain. God answered that prayer in ways I never would have dreamed and yet here he was two years later on his knees again......but this time celebrating. I just watched and pondered it in my heart. Thankful!

We had the opportunity to share this story with our church the week after Thanksgiving. which was followed by CJ cutting off the blue "Pray for CJ" bracelets many wore for over two years to support CJ! It is weird to see wrists empty that wore that bracelet consistently for two full years. I am so thankful that although many of the blue bracelets are gone...CJ is still here.

Speaking of thankful again, we worked very hard on our Thanksgiving Drive for CBC and CJ was a huge help in collecting and delivering bags. We had 125 families fill and decorate over 135 bags full of Thanksgiving meals. Then we had the amazing privilege of delivering those bags to pediatric oncology clinics, hospitals, and homes. We had such fun dong this. I wish you could be in our shoes, which I have begun to refer to as 'The Middle Man'. We get to spur one another on towards love and good deeds getting to witness the reaction of those people who step up to the challenge. Then we get to deliver the love and good deeds of others to families in need and witness their reaction. It is really cool. I like being the Middle Man.

We got some great feedback this year. The nurses and social workers at the clinic shared with us that they were practically fighting over who got to hand the bags out because they loved seeing the reaction of the families when they received the beautifully decorated bags so full of love (and food). They said some would stand there and cry on the spot! The families are extremely grateful! But here is the secret to this whole thing......The people who fill the bags are even MORE thankful that the ones receiving them. We can not tell you how many people thank us for allowing them to make the bag and be a part of this. They share with us what it meant to their family. See! It's that God's economy stuff again. What is that saying? Hmmmm? It's better to give than to receive right? Amazing how He is always right!

In light of that, we had some people and churches who worked on the Thanksgiving Bags ask about Christmas and how they could help. Interesting how we spurred others on for Thanksgiving and then they spurred us on to step it up for Christmas. Last year we sponsored two children and their families and delivered miscellaneous toys and stockings to the clinic. for other kids. This year, in faith, we requested a list of families in need from the social workers and child life specialists at the hospital and thanks to you we were able to turn NONE away.

We matched these children (and their siblings) with families, churches, companies or clubs that are adopting them for the holidays. My house was covered in toys that others donated for the sake of someone else. We already made one trip to the hospital to deliver the gifts. So a HUGE thank you to everyone who sponsored a child and their siblings for Christmas. We are blessed beyond measure to witness this outpouring of love. We were so moved by what we were seeing we adopted our own special family as well and we have more fun buying their gifts than we do buying our own kids gifts. There goes that strange economy stuff again. I am sensing a theme here.

Well there is so much more to share but I will break it up into different posts for the sake of your sanity!

I hope you all had a meaningful Thanksgiving and are preparing for a meaningful Christmas as well. Oh, don't even let me get started on that one....

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)




Wednesday, October 27, 2010

Stand by and Watch

We are heading back to Joe DiMaggio tomorrow (Thursday for CT Scans, which were finally approved by our insurance carrier. We will follow up Friday morning with blood counts and a possible port flush. Shhh.....Don't tell CJ yet!

Please pray for all to go well and once again... for clear scans.!!!CJ will be up bright and early drinking the contrast dye necessary to get the scans and then we will head over to the hospital to get started. I am honestly not completely sure why we are doing this since the PET Scan was clear but I believe t is because the doctor wants a baseline in the event that CJ were to relapse in the future. Which he won't! Amen! But I think it may be because it shows some views that the PET Scan does not. So all in all it is very important.

CJ has been doing really well physically. He is playing baseball again and he loves it. I can see the improvement in him physically as he runs the bases. His strength and endurance are coming back gradually as well.

He is really falling in love with Hockey, and in many ways Hockey has fallen in love with him. CJ had a big impact on the COO of the Fl Panthers, Michael Yormark, when he spoke at an event. As a result, Mr. Yormark invited CJ to speak at the FL Panthers business meeting a couple of times. They also invited him to drop the first puck at the Hockey Fights Cancer game as well as ride the Zamboni on opening night. This was really wonderful for him. He was so excited for all of this and it all fell right when he was ending treatment and getting the scans completed so it has been very celebratory for our family.

We also recently attended the FL Panthers Hockey Foundation Annual Luncheon where they announced their mission to fight pediatric cancer. We are excited to be a part of this, not only as a family but also as a foundation. They have selected our foundation, CBC, among other great pediatric cancer foundations, to support as part of their ongoing mission.

We are grateful that more and more corporations and foundations are getting behind pediatric cancer. We still have a long way to go but they are helping pave the way for the future. We are so grateful for the Florida Panthers as well as the Hyundai Corporation for their Hope on Wheels Program. Some other amazing foundations supporting pediatric cancer are Glad Cookies for Cancer Foundation (these are the Glad products you buy at the store), the Jeff Gordon Foundation and the St. Baldricks Foundation.

Speaking of the Glad corporation, CJ has been paired up with Peter Facinelli of the Twilight Series for the Glad to Give Celebrity Cookie Challenge. I have been told that if Peter wins then CJ wins. You can help Peter win by simply clicking this link GLAD TO GIVE and hitting "Join Team" Under Peter Facinelli. Not completely sure yet what he wins but I know it is that simple. So take a second and do this for CJ! You guys have already voted him to the top of the Most Powerful Kid Contest once before, so I know you can do it again!

As I mentioned, CJ has been speaking at many events for Light the Night to help fund-raise and promote the walk. He has been selected as the Honored Hero for Light the Night's Broward Walk this year which will be held on November 13th at the Wayne Huizenga Plaza in Ft Lauderdale on Las Olas. As the honored hero he will be speaking at the kick off right before the walk so if you plan to come out don't be late! Our tables will be somewhere near the stage this year so you all can see well.

At this event, we will be cutting off our blue Pray for CJ bracelets that we put on over two years ago to show support to CJ and remind us to pray. There are so many of you who have consistently worn them for two years now. Some I know of have never taken them off. Amazing! And it means a lot to CJ and our family. Even if you have not worn yours in a while, put it on and come to the walk and stand with us as we symbolically remove them just as the Lord has removed the cancer from CJ's little body. If you need one or have lost yours let me know and I will send you another one!

We are really hoping for a huge turnout for this END of Chemo Walk for CJ. Come celebrate with us. If you still have not joined his team here is the link Light the Night Team CJ End of Chemo Walk.

I know all of this sounds so wonderful and it is true that some really amazing things have happened to our family as a result of all of this. We had the opportunity to spend some time with some family and friends this weekend at a very special place and it was amazing. It wasn't something Chris and I could do for CJ. It was a gift. I kept thinking, how did we get here?

Sometimes I ask myself......If someone sat me down and told me all that would happen and all the good things that would come to my family but only if my son got cancer and went through 2 years of chemotherapy and fear and anxiety never knowing if he would survive and watching so many other children suffer and die what would I have said; I think I would have probably said, "No thanks! Keep your blessings and I will keep my healthy child."

Of course I did not have that option then and that is a good thing. However, I am so thankful that God allows, even orchestrates, good to come from bad. I am so thankful that some people out there 'get it' and are willing to use their resources, time, energy, blessings to lift the spirits of a child who has been through something like this. (Peter Kahn, there are no words to thank you for the generosity and kindness you have shown our family. God is using you my friend. I pray you will see His hand on your life as we do. We are truly stunned at what you have done for us. Thank you!)

As CJ's parents, it means the world to us to see him sit on a Zamboni and ride it across the ice at a Hockey Game, or drop the first puck, or throw out the first pitch at a baseball game, or in the water riding the back of a dolphin, or enjoying his friends at an event we could never have otherwise provided for him. For any parent these would be great moments right? Sure they would! But you see, we have sat by his bedside in a hospital for two years watching him be poked, prodded, and poisoned and there was nothing we could do by stand by and watch. Those images get burned onto your brain no matter how hard you try to not allow them to. So if we can now stand by and watch him have some joy, you better believe we are grateful and we are burning those images into our brain just as fiercely.

As I stand by and watch, I am always thanking God. Don't get me wrong,...I see the individuals who organize, pay for, and donate these events to CJ and I am thankful for them. But even more so, I see my God's hand behind it all and I just think, Wow Lord, Look what you did! You are so kind!


"Do not be afraid. Stand firm and you will see the deliverance the LORD will bring you today... The LORD will fight for you; you need only to be still."
(Exodus 14: 13-14)

Monday, October 11, 2010

Bitter-Sweet

Update: CJ's scans came back No Evidence of Disease! Praise God!



I have not written in a while. I have sat down to do it many times but have continued to find myself in a battle for a clear mind. I guess I know how transparent I am not only in person but also in my writing, and I know my struggle would show through. Not that I ever struggle to admit that I struggle, as any long time readers of this blog know, but this has been a different kind of struggle. It seems like lately each battle I have faced has been two fold. The best way I can describe it is 'bitter-sweet' although more accurately processed in my heart and mind as just plain confusing.

First, let me update you on CJ which is why we are all here. As you know, CJ is now one month off chemo. This has been one of those bitter-sweet transitions for me. I celebrate and rejoice and fall on my face before the Lord in gratefulness for CJ's healing and continued physical presence with our family, but I also struggle with the transition and the end of something that became very familiar.

Recently, we attended at a luncheon for the Florida Panthers Foundation. They have adopted pediatric cancer as their mission and we are so grateful to be a part of this great cause they are supporting. As the slide show played, images of CJ flashed on the screen and clips of interviews I had given were played. These were followed by images of 12 year old Carina who passed away while her and CJ were both in treatment for Lymphoma. Her mother's video clip played and I was just torn up. Here I was sitting at this beautiful table with my son across from me celebrating his recovery and just extremely thankful to have him there. I had been excited for him all day. Then it hit me so suddenly, at the very next table was my friend Carla, Carina's mom. Her child was not seated across from her. Pictures of Carina continued to flash on the screen and I just sat there wondering if I would have the strength or desire to be here if CJ were not with me. It was bitter-sweet, and I decided right then and there that there is nothing harder than rejoicing while suffering.

Last week we finally met with CJ's primary oncologist. Chris and I felt we needed to sit down and discuss where we were at and what we needed to watch and prepare for as we enter this phase of being off chemotherapy after two years on it. Walking away from treatment with things so unclear was not comfortable for us. Walking away with no scans, as I mentioned in our last post, was a shock to Chris and I and left us feeling extremely vulnerable.

Thankfully, we have a great primary oncologist and he was able to explain some things to us. We felt we needed to hear from him why we were not having scans and where to go from here. We feel very confident with him. He was the first person to tell us CJ would be okay and we would get through this. I am not sure if I ever shared this before, but about a week into CJ's diagnosis we were so scared and confused. We had met with so many doctors and everyone who walked in our room was so serious and sometimes even somber when it came to what was wrong with CJ. No one really knew what CJ had at first and we waited days for an actual diagnosis.

After the diagnosis, while CJ was in a biopsy procedure and we were standing outside the door of the room, we ran into our oncologist and I will never forget Chris asking him directly if we would be taking CJ home on hospice when we were discharged. I was shocked Chris asked this because I had not considered this and it immediately scared me when I heard the word 'hospice'. The Oncologist's eyes got really wide as he responded with a definite, "No!" It was the best 'No' I have ever heard! I never thought I would be so happy to hear the word no before. Needless to say, he has been my favorite doctor ever since.

Well, we sat down with him just last week, two years after that emphatic 'no', and this time we were hoping he would say 'yes' to scans. After some discussion, what it boils down to is that there are different schools of thought with different doctors for different treatments of different cancers. Basically, there was no set course at the end of non-Hodgkins Lymphoma like CJ had that that said we have to scan him at the end of treatment. CJ's cancer is a very aggressive and fast growing cancer so if I understood correctly they are thinking you will most likely catch it before the scans even will if they are spaced out a year apart.

I asked about the blood work catching it since it never did in the first place and he admitted it would most likely not catch it if CJ had a relapse of Lymphoma. He said, CJ would catch it and we would catch it because we 'know' things now and would be more aware of certain changes. No pressure there, right! So I of course asked why all the blood work then and he said that they are watching for Leukemia which is a "late effect risk" for children treated with this. That was news to us. They also use the blood work to monitor for any organ damage or side effects from the long term chemo he has been on.

However, in this discussion we also learned that we did have the option to do scans. Thankfully, our doctor agreed that scans would be the best course for CJ at this time so that we can have a baseline of where he is now and a comparison for the future if there was ever any re-occurrence or even suspicion of relapse.

As we were talking about CJ's treatments and progress, the doctor began to read out loud to us the old scans from when CJ was initially diagnosed. I was surprised at my internal physical reaction to this. Hearing all the technical and medical terms expressing just how vast CJ's cancer was spread throughout his body and how many tumors he had was a shock to my mothers heart all over again. I think we have been so focused on treatment and getting through each phase, that we have not looked back to the beginning and considered where we began all of this. It has just been one foot in front of the other for two years now.

As he reviewed CJ's initial charts, he read words aloud like "multiple masses in kidneys" and "multiple solid renal masses" and "extensive infiltrative soft tissue density in pelvis region" and "soft tissue mass in presacral region" etc. etc. As he read, those words all came flooding back to me and I just sat there listening with a heavy and yet thankful heart. It was a bitter-sweet feeling once again upon hearing where my son was then and knowing where we are now.

It is now two years later and we are prepared to do all these scans all over again. Instead of the above medical terminology and language we are fully expecting to hear, "No Evidence of Disease" NED!!! NED!! NED!!!

So that is what we are asking you to pray for.....NED for CJ!!! He will have a full day of tests and scans this Friday starting bright and early at 6am. He has a PET Scan, Cat Scan, EKG, Echocardiogram and the like. The scans are to check for any signs of remaining disease that the chemo did not kill off. The heart tests are to check for damage to the heart from the chemo. Apparently, one of the common late effects for kids treated for childhood cancer is heart damage. This often does not show up right away so his heart will be monitored for the coming years for this. We are fully expecting and asking God for this to be completely normal as well.

CJ continues to progress physically. His blood counts will steadily rise as he is off chemo for longer and longer periods of time. He has been immune suppressed at one level or another for so long and on so many different medications and steroid regimens that I am not sure he knows what it feels like to feel normal and truly healthy. But he is getting there, praise God! His strength is increasing and mommy is praying for his concentration to increase as well.

Thank you for your continued prayers for CJ. We are so grateful and humbled by your prayers!!!

On another bitter-sweet note....my 4 yr old niece and 7 yr old nephew, who have been living with us since April, went home to Gainesville last weekend. My sister was ready for them to return and we felt this was best for her, the kids, and for our family as well. In all honesty, the last 7 months were extremely difficult. We knew we needed to take these kids in and it was what God wanted us to do but that did not make one bit of it any easier. So as you can imagine, saying goodbye was a bitter-sweet experience for us. We will continue to pray for them and just beg God to use whatever good we imparted in their lives and cover over any areas we failed to fulfill His call on our lives in the lives of those children. I know I failed Him in so many areas when it comes to this issue and this is something I am working through. Thank God, His plan does not rest on whether I succeed or fail.

Many of you have asked about my step father Enzo. Thank you so much. I don't update because I just honestly don't know how to answer that question most of the time. He is with us! He is fighting to live! He just wants to live and is more determined to live than anyone I have ever known. He refuses to give up and does not even read the scan reports that would have much of the above mentioned medical wording only a hundred times worse. He won't let my mom read them to him. He wants to believe it is over and he is fine. The truth is, the doctor pulled him off the chemos because they were killing him too, just not as quickly as the cancer would have. He could not tolerate anymore. He is now on a maintenance chemo called Avistan. It does not have a long promising outcome but don't tell Enzo that. He is cured as far as he is concerned. We as his family are grateful for his attitude but we carry the weight of what we know the scans say and the statistics say. Regardless, we never thought he would be here this long and we are grateful for every single day he has. He fights to live as normal as he possibly can but the truth is he is in more pain than most people can imagine. It is just so hard and so sad to watch. My mom has been amazing. She walked us through my fathers death last year and now walks my step father through the valley of the shadow of death with no clear hill top in sight. She just keeps walking by his side and holding his hand. As depressing as it is, it is also quite beautiful. She is in the trenches with him; fighting. This has brought us closer in deeper and more meaningful ways as a family. I guess that is the sweet side to this bitter pill.

Lastly, tomorrow will be the most bitter-sweet day of all. Tomorrow, October 12th, my son Brett will turn 8. While we celebrate life and thank God for this very active and sweet son he has blessed us with, it will also mark the one year anniversary of the suicide of my father. I will drink that cup and taste that gall beneath every smile and laugh and joy I express tomorrow. I will choose joy and not sorrow tomorrow as I know that they will both be laid before me and I will once again swallow that bitter-sweet pill that has become a friend to me.

In reflection, the cross is the most bitter-sweet thing that has ever happened to me. If I can rejoice in the cross, then I can rejoice in anything.



Monday, September 13, 2010

Don't Waste It!

(Picture: A surprise Allie made for CJ to open
after his last chemo since she could not be there!)


Today, September 13th, is Childhood Cancer Awareness Day. The entire month of September is National Childhood Cancer Awareness Month. The symbol is the gold ribbon. See it everywhere? See people hosting fund-raisers and wearing gold ribbons? See the stores displaying all their gold and helping raise awareness? Didn't think so! Just wait till next month......October is breast cancer awareness month. You will see so much pink it will make you crave Pepto Bismol just to settle your stomach. I'm sorry...I did not mean that! Well at least not in a, "I don't care about breast cancer sort of way." One of my best friends battled breast cancer and shared her journey with me intimately which I will never forget, my aunt battled breast cancer, and another friend is now battling breast cancer. I care about breast cancer and I am glad it gets the support it does. I just struggle with how little support and funding and attention childhood cancer gets.

I won't bore you with the statistics but they are there if you care to read them. The cures rates don't compare, the funding for research would make you think you misread the numbers, the amount of support...well, see for yourself when October hits. The other day I was driving down the street with CJ in the car, on our way to Joe DiMaggio to help raise support for childhood cancer awareness when I noticed a crowd of traffic. The fire-station by my house was hosting a car wash for breast cancer. I couldn't believe the crowd. I saw CJ's face. He looked over and said, "Mom, isn't childhood cancer awareness month now?" Of course, that does not mean that breast cancer or any other great cause can not raise support in the month of September, but I did not see any other car washes for childhood cancer on the way.

This is when I remind myself that the Susan G. Komen foundation had to start somewhere right? I believe I read somewhere that it took them over 10 years to get the awareness they have. And that is exactly what Children Battling Cancer (CBC) is committed to doing. We chose our logo as the gold ribbon to help raise awareness and we are committed to bringing hope and help directly to the families in the thick and aftermath of the battle. We will support the families as well as causes and events that seek to raise money for childhood cancer research. So it is my great hope that in less than 10 years you will see gold ribbons everywhere during September and portions of many of your proceeds will go to childhood cancer research and we will put a dent in the number of children losing their lives to cancer, which remains the number one disease killer of children.

I have great respect for what the breast cancer foundation is doing and am grateful for the strides they have made. For all I know, I will someday be one of the lucky ones to have a 95% cure rate if I am ever diagnosed. My only how is to see people take the same interest in childhood cancer some day. The rejection we often face while raising awareness is heartbreaking. If you did not see the parallel displayed on the news link we posted to facebook here is the Video It says it all.

Wow! That is not what this post is supposed to be about. Excuse my little tantrum and I apologize if I offended anyone. Instead of deleting all of the above, I will entrust it to you for what it is worth and redirect my thoughts and heart from here on in.

What this post is about is CJ! As I mentioned, before I got off course, September 13th is Childhood Cancer Awareness Day! Ironically, it is also the very day that CJ was diagnosed with cancer. September 12th he had the MRI that lead us to be rushed to the emergency room and then transferred by ambulance to the Joe DiMaggio Children's Hospital in Hollywood, FL. But it was not until the next day, Sept 13th that I was told my son had some form of cancer. I did not know then that it was Childhood Cancer Awareness Day or even that it was Childhood Cancer Awareness Month. So I ask you....coincidence or providence? I'll let you decide.

I still can not believe it has been two years. I am going to share with you where we are now and how CJ's final clinic appointment went for him and our family.

The day started off well enough. I got up early and spent a good portion of the morning on my face thanking God for CJ's healing over the last two years. Running this foundation and working so closely with childhood cancer has taught me more than anything that there was never a guarantee that we would make it to this day no matter how many people continued to reassure me we would. I also know it has nothing to do with anything we did to protect CJ during these two years, or where he was treated, or what type of cancer he has. It also has nothing to do with God hearing our prayers any more than He heard the prayers of the other parents whose children did not make it to the last treatment. It has everything to do with what God's plans are for CJ's life and it is evident, those plans are not yet done here on earth. As I prayed I was also very aware that many families do make it to this day only to re-enter the battle all over again within months or years. That is not to say I am heading into this post treatment phase as a pessimist but rather as a realist.

Please hear me when I say, I am so grateful that CJ is still with us. Everyday is a gift and everyday I look in his face and I see Andrew, Carina, Amanda, Carey, Brett, Sam, Tyler, Luke, Anthony, Jessica....and so many other kids that are no longer with us. It is my hope and prayer that I can somehow love and raise CJ in a way that honors those kids and their families. I don't ever want to take for granted that CJ is still here, but please hear be gently when I say, I am more afraid of losing my children to the world than I am to cancer. My goal was never survival. It was and will always be eternity. Eternity with the Lord. No matter how long they live on this earth, they will spend eternity somewhere. That matters more to me than the brief time they spend here on earth with me. I want them with me here yes! But I want them in eternity with me more. That may be hard for some to hear and I was the type of parent who could not have said that years ago. But I can tell you now that I pray more for their souls than I do for their lives. A life well lived will not be measured by the length but by breadth.

Thursday night before the appointment was very difficult for me. I was up late working on some CBC stuff on the computer when I read about another child that had just passed away, which lead me to read about a few more I was unaware of that passed away during September. My heart was heavy and tears were difficult to hold back. I realized at that moment how precious the next day was no matter what the future holds. Before going to bed, I reminded CJ that the next day would be his last clinic chemo and I cupped his little face in my hands and looked him dead in the eye and challenged him soberly, "Don't waste it!"

He knew exactly what I meant and what I was feeling when I said that. He knows it is a gift. He knows he has been set apart for Christ and he wants to fight with all his might to be a vessel God can use. I will do everything in my power as his mother and as his sister in Christ to stand by him and encourage him. And I will continue to fight like crazy when he is attacked by the enemy of his body and soul. But I will also never stand by idly and watch him waste this amazing gift he has been given.

With all the great intentions, and the great start to my early morning, Friday did not quite go the way I envisioned. We prayed in the car while the family was all together but this was interrupted by CJ struggling with his Emla cream on his port and Corey demanding something from his car seat. I just love when I try to be all holy and set a good example and get our family focused on God and we end up arguing and frustrated instead. Please tell me that doesn't just happen to us! Instead, I just finished praying silently and we headed to the hospital with CJ really frustrated about his port.

CJ did his blood counts first when we got there. His white blood cells came back low which lowered his ANC. Even though he was in the lower range, they were able to order his chemo while we waited. I watched all the new families with their adorable bald little children. I wondered where they were in treatment and what they must be feeling as we waited on CJ's chemo. I wanted to know each one's story and encourage all of them but it is such an awkward place to describe. I don't know what it is but you can be sitting in this room full of people with kids with cancer and everyone is afraid to ask the obvious..."What does your child have? or When were you diagnosed?" I noticed a slew of teenage boys there that day. They are common Leukemia diagnosis. I wondered what it would have been like of CJ were a teenager when this happened.

While we were waiting on CJ's chemo, one of the therapy dogs showed up for CJ with a balloon tied to his back and a note taped to his chest that said 'Congrats CJ!' That was very thoughtful of them to set up for CJ and it did make the day feel more special. When CJ saw the dog, he used that opportunity to tell the nurse that his mom promised him a dog when he made it to maintenance and never got it for him. And that I promised him one when he finished treatment and I still have not come through on that. Maybe when the port comes out! Ha! Lucky for him God is not slow on keeping his promises; only mom is.

CJ's chemo came but we were told just before they administered it that his liver function levels were high on his blood work and that the protocol calls for only half a dose to be given when this happens. That was a bit of a surprise because it has never happened before. It was also a great reminder of why we are so thankful to be ending all these chemo injections. Although it has been a huge weapon in fighting the cancer and keeping it at bay, it is also wreaking havoc on CJ's organs. It is "poison" as far as his body is concerned and side effects and long term damage are always a concern for us.

CJ handled his port access well and we took lots of pictures and some video which we will load up for you all that have followed his journey. As he was getting the push, the nurses and Lotsy began singing the famous "end of chemo" song. It was quite the spectacle.

So where are we now? CJ is home taking his 5 day steroid regimen that always follows chemo. He will continue oral chemo for the next week and he has to go back in two weeks for counts to check his levels and be sure the liver goes back to a safe range. He has to have his port accessed and flushed every month until it is removed. Hearing this, it seemed to CJ like not much has changed. At least not yet. To him, this will all feel over when they take the port out of his chest. As long as he is getting accessed and doing blood counts and taking pills at home it really feels no different to him....yet. But it will. Slowly but surely.

Chris and I on the other hand are finding ourselves presented with the opportunity to fully rely on God again. While speaking with the doctor about the next steps for CJ's end of treatment we were told that CJ will not be getting any end of chemo scans or biopsy. Nor will he be scanned continuously through the next couple of years like we originally thought. That was a surprise to us! We are not really sure if this is just the protocol for CJ's type of cancer and staging or if it comes down to insurance politics. We have asked to speak to his primary oncologist to understand this better.

Our concerns would be that CJ's type of cancer did not show up on any blood work we did for the 8 months we were trying to figure out what was wrong with him even though he was Stage 3 by that time with multiple tumors throughout his abdomen. It also never showed up on any x rays. Three sets to be exact! Huge tumor wrapped around the spine and not one x-ray revealed it. So our question would be.....do we just wait until the tumors are advanced enough to cause him enough pain to complain and then get some scans? And the answer is, we are once again presented with the opportunity to trust God and His timing and His care for CJ above our own or our desires to have clear cut answers and results.

CJ's journey is not over. It has only just begun. We are excited for some of the upcoming and exciting things he has going on as treatment is ending. We will share some of them shortly.

Please continue to pray for CJ as you think of him that the Lord will continue to heal him and use him. Please pray for our family's peace as we enter into this new phase of post treatment. We are anticipating the changes it will bring with uncertainty. We are very aware that many of the families we have met seem to enter into a period of Post Traumatic Stress Disorder shortly after treatment ends we are hoping to prevent this by staying focused on what God is doing in our lives right now and not get caught up in the past.

Please continue to pray for all Children Battling Cancer throughout the month of September. If you have not requested your chemo bags please send me an email and I will mail some to you so you can participate in this great awareness fund-raiser. dawnison@bellsouth.net

If you think of it please pray for me as I continue to struggle emotionally with the suicide of my father. Oddly enough, September 10th was National Suicide Prevention Day. Add the anniversary of 9/11 into that as well as CJ's cancer diagnosis on 9/13 and September is turning out to be a very deep month for us emotionally.


CJ getting his last chemo.



CJ and his buddy Lotsy


Daddy and CJ Mommy and CJ


CJ and the therapy dog



Corey hugging his big brother