Thursday, September 24, 2009

More Than Pleasantly Surprised

Sometimes I seriously wonder why God is so faithful to me when I am so faithless to Him. I wallow in the murky waters of doubt, confusion and low expectations so often. I struggle to discern his voice and yet listen to the lies of the enemy so easily. Sometimes I think my faith and expectations of what God can do are so low that He must get a kick out of watching me be surprised over and over again.

CJ was recently invited to a Marlins game with a program called New Era Caps for Kids. This is a program that provides a signed cap for a child with a life threatening disease from someone they admire. Knowing CJ is a Marlins Fan, they matched him up with the Marlins and sent us to a game. We were told he would get to attend batting practice and there would be an on field ceremony where a player would come out, take some pictures with him, and sign his cap.

Although extremely grateful for the opportunity, I confess I was more than a little worried how the night would play out. I pictured CJ surrounded by half naked cheerleaders (that is being extremely generous on my part) and a player coming on the field who is indifferent to CJ's situation and just doing his job. I was worried the night would not glorify God and would misrepresent our ideals and values. I prayed silently on the way there that the cheerleaders would not be anywhere around. I asked God to give me the courage to politely ask them to step out of our family pictures if they were and the wisdom to know when to keep my mouth shut.

We arrived and were greeted by a Marlins representative who escorted us to the on field batting practice where we were told to stand behind the marked lines and watch. We were instructed not to call out to the players or seek autographs unless the players come over to us.

We watched for a bit and Hanley Ramirez walked over and signed some autographs. That was very exciting for the kids. As we stood there CJ said to me, "Mom, Brett Carroll just waved at me." I asked him which one was Brett Carroll and he pointed him out to me. At this point, all I knew about Brett Carroll was that, according to CJ, he could throw anyone out from anywhere on the field. (I thought that was a pretty impressive baseball statistic and one you don't hear very often) I also knew that I liked his name having my own little Brett. Add to that that he waved to my kid...and I was becoming a fan.

Another Marlins Rep standing close by heard us talking about Brett Carroll and asked if we liked him. I shared with the Rep my three fascinating reasons for liking Brett and he found them to be quite interesting. He even questioned me, "You like Brett Carroll because you like his name?" I told him that we have players we like for various reasons but in our family we tend to wait until we know what kind of person they are beyond their playing ability before we decide how much we like them. Promoptly, the Rep said, "I will tell you what kind of person Brett Carroll is.....he is a man of great faith and recently spent over and hour sharing his faith with me while we were on a road trip." Add that to my three fascinating facts and now you have a true fan!

As I stood there, I suddenly felt very strongly that the Lord was asking me to share with this gentleman why we were there. So I took a deep breath and told him why it meant a lot to me that Brett Carroll waved to CJ. I told him about the Cap for Kids program we were there for that evening and why CJ was chosen for it. We spoke about CJ's diagnosis and treatments.

This man, Peter Kahn, was obviously affected by CJ's story. His face registered compassion and kindness. He looked at CJ fondly and it almost made me cry. It wasn't a look of pity that I often see but a look of understanding. Through conversation, I came to discover that this gentleman had three sons of his own, all similar ages to our three boys.

Once again, we watched the batting practice and chatted excitedly with the kids. In an amazing gesture of kindness Peter said to me, "I can't make any promises but I made eye contact with Brett and hopefully he will be coming over when he is done." Trying not to set ourselves up for disappointment, we waited eagerly and hoped he would come. I told CJ that if he did come over he could offer him a Pray for CJ bracelet.

Brett did make his way over to the kids. CJ handed him a ball to sign and the first thing CJ asked him was while he was signing it was,"How did you get your arm so strong?" The first words out of Brett Carroll's mouth were, "It's all the Lord! It's a God given strength." CJ looked back at me with huge eyes. I smiled at him knowingly. At this point, I am a certified fan. They chatted a bit CJ handed him a bracelet and told him, "I heard you were a Christian like me so I wanted to give you this and ask if you could pray for me." Brett took the bracelet and said sincerely, "I sure will." We took some great pictures with him and said our goodbyes.

As we stood there, I had an opportunity to thank Mr. Kahn for initiating that meeting and we spoke a little about faith. Once again, I got the feeling the Lord wanted me to share more with him but I wasn't sure what. As we talked about CJ's illness and faith and he shared that faith was important and that "faith was faith." Not sure what he meant, I offered that my faith was in the Lord. He then shared that he was Jewish. A little late on the uptake as usual, I was beginning to realize God was busy at work in this situation. I explained to him that I was also of Jewish heritage and that I was a believer in Yeshua, Jesus, as my savior. I shared with him that my father is a Jewish believer as well. As we spoke, I remembered that he said Brett Carroll had recently shared his faith with him. I knew that God was definitely up to something in this man's life. Peter asked me if he could have a pray for CJ bracelet too. Honored that he would ask and accepting his offer to pray for CJ, I gave him a bracelet and we said our goodbyes.

As we were lead into a room to await the on field ceremony to begin, I was feeling a little rattled like I failed somehow to share what God wanted him to hear. I was really excited for CJ and so grateful God lead a Christian player over to us but it felt a little incomplete and I was inwardly wondering if I should have been better prepared to give an answer for the hope that is in me and once again found myself wishing for a second chance.

As we waited and cooled down from the intense South Florida heat our appointed representative came in with a bag of goodies for the kids. There was a t-shirt jersey for CJ and somehow before I even pulled it out I knew what number it would be....and I am sure by this time if you have been following this blog for any length of time you do guessed it..... number 3. CJ's number! God continual reminder to CJ that He is with him. None of us were surprised but I will admit I was beginning to realize that God was more involved in this night than I originally expected. The Rep handed him a hat and reminded him to take it with him when he was called over to home plate so the player could sign it. We said thank you and were told to relax and wait until they came to get us.

While we were waiting, Peter Kahn unexpectedly walked in the room with a bat in his hands. He was looking for CJ. He walked over to him with the bat held gingerly in his hands and told CJ, " Brett Carroll came and gave this to me and asked me to be sure you got it. This is his personal bat." As he handed it to CJ we could see that is was still sticky from just being used moments before. We looked down at it and saw the handwritten inscription:

"CJ, May the Lord give you strength! Praying for you and your family. God Bless, Brett Carroll Gal 2:20"

As Peter Kahn stood there with us, CJ looked at me as if to ask what verse it was and thankfully I knew it. As I recited it for him I was acutely aware that the verse was for Peter as much as it was for CJ. This is one of my favorite verses and I realized I was getting that second chance I had asked for to share God's words with him. Since I can not be trusted with my own words, God put me in a position to share His instead.

"I have been crucified with Christ and I no longer live, but Christ lives in me. The life I live in the body, I live by faith in the Son of God who loved me and gave himself for me."

Stunned, we all sat around holding the bat and talking about how amazing everything had been so far. In our minds, the on field hat ceremony could not even come close to this. Having met a Christian player who we believed would honestly be praying for CJ, a Jewish brother who God is obviously seeking, and holding a bat with scripture on it from Brett Carroll would not compare to a hat signed by the most famous player in the entire MLB association. This is where I failed to realize that God does more than we can even think or imagine and our minds are so little.

Within a few minutes we were lead back out for CJ's on field ceremony at home plate where he would receive the signed hat. We asked our Rep if she knew who the player was and she said no. CJ was lead over to home plate by the Billy the Marlin Mascots (no cheerleaders in sight, praise God!) and we were asked to wait and watch from afar or watch the jumbo screen as it would all be broadcast overhead.

CJ was a little nervous when he realized he would be going alone but you can imagine how that just completely melted away as Brett Carroll stepped out of the dugout wearing CJ's blue bracelet. CJ was ecstatic! He looked at Brett and said, "I knew it would be you!" What he was really saying was that he was hoping it would be. They chatted, posed for pictures and Brett signed the hat. CJ had a smile from ear to ear. The rest of us watched everything from the jumbo tron just amazed at God. I wish I could adequately express our emotions and I hope I am faithfully painting a picture for you of that special night.

After the ceremony ended CJ walked back over to us and handed me the hat while boasting, "Wait until you see this!" The hat read,
Brett Carroll #25
Romans 8:28

I just stared at it and silently prayed, Father forgive me for doubting You or confining Your hand to 'religious' events. I realized again that God is so much bigger than I give Him credit for. He is faithful when I am not. He meets my low expectations with His highness. I was more than pleasantly surprised as He turned an event that I was worried would be secular and unedifying into a God glorifying evening. We walked out with a hat and bat not only signed, but signed with Scripture. Praise be to God!

There is so much more I could share with you about that evening and how God has been working since, but let's just say that since that night our family has been actively praying for Brett Carroll's career as well as for Peter Kahn to come to faith in the Messiah.

Last night Brett Carroll had the winning at bat that ended the game after trailing by 3 points for majority of the innings. He walked over to the microphone and praised the Lord openly twice on National Television. I pray for faith like that! God make me a faithful steward of Your word. And thank You for Your second chances when I fail.

Tomorrow CJ will go in for blood counts to see how he is reacting to the chemo. He has been feeling well and has recovered from the cold we all picked up in Orlando.

I ask for prayer as we continue to try to find out why he is still dealing with the limp, increased shakiness at times and just a general lack of muscle control that effects him overall. Although we hope and pray these are only side effects to the medications and will all correct itself in time, we will be seeing a neurologist in two weeks to follow up.

Lately I have struggled a bit as CJ has looked at me more often and said, "My stomach hurts." I have to allow that to bounce all over my heart and through my head and then just say okay and offer him water or send him to the bathroom. But I confess that the flashbacks and fear that these reactions will turn out to be regrets like they were when he got diagnosed is always with me. But what choice do I have? I can't run anywhere and find out if the cancer is growing again or affecting him every time his stomach hurts. I just have to trust in God, believe God knows and will reveal to me anything He feels I should know in His due time.

Thank you for letting me share our journey and thank you for your prayers!

Brett Carroll with CJ, Allie, and Brett

Peter Kahn and CJ after presenting the bat

CJ and his good friend Adam at the game

Saturday, September 12, 2009

A Day of Broken Promises Redeemed

It was an experience our family will never forget. It was also a day I learned a very important lesson.....Never make promises you have no power to keep! I repeatedly broke promises to CJ that day until I realized I had better keep my mouth shut and trust in the only One who can not break promises.

Today is the one year anniversary of the day we sat in an office while CJ had a routine MRI that lead to the most unexpected diagnosis we could have ever imagined. I have never shared the details of how that day developed and lead us to where we are today although I have had lots of questions about it. I guess most people are curious about the process and our reactions and many never really knew how we got here. I though it would be therapeutic to write about it on the one year anniversary and also share with you how we plan to redeem a day of broken promises to bring Glory to the keeper of promises.

On September 12, 2008, one year ago today, we arrived to the outpatient center at our local hospital as you would for any routine appointment. I realize an MRI may not sound like a 'routine' appointment, but in the sense that we expected to have the test done, spend about an hour tops at the hospital, and head home, it was routine. We left our other three kids home with grandma and headed out. I had plans to begin teaching our first PE session for the school year to a large group of 5-9 year olds with our homeschool group by early afternoon that day.

CJ was nervous the morning of the MRI but he is a child who is persistently nervous so to be perfectly honest he was doing quite well under the circumstances. I do remember him having questions about the procedure in the waiting room. He was worried about getting shots and I looked him in the eye and said, "CJ, don't worry, I promise there will be no shots! All you have to do is lay still. The stiller you lay, the faster we go home."
That would be the first of a series of broken promises.

The MRI began as normal as would be expected. We were told to expect a loud machine, a cold room and maybe 30 to 45 minutes of laying still. We prayed with CJ before beginning and told him we would be right by his side the entire time. CJ entered the machine and Chris and I sat in chairs beside him bundled in covers and we each prayed silently for CJ's anxiety and comfort as well as for the results. We read for a while, prayed some more, and waited.

Please hear me when I say we did not want the MRI to find 'something wrong' with CJ but we did desperately want answers by that time. I remember praying as he was in the machine in a confusing sort of way, "God, please don't let anything be wrong with CJ, but I know something is wrong, so please reveal what it is so we can help him." Thankfully, we have a God who deciphers our messed up words and delivers according to our hearts and His will.

CJ reminded me of this one night not too long ago. I was in the office typing while he was in the bath after a long day of chemo. He called to me from across the hall, "Mom, do you think when we say the wrong thing when we are praying or we use the wrong words, God still answers the right way?" I told him "Yes! God listens to your heart not your words." And as I said it, I thought back to this day and my confused prayers.

I guess what I was thinking as I was praying for CJ that day was, what will we do if we are told, once again, that everything looks good and they see no problems or abnormalities. We did not know what the next step would be at that point other than starting over at step one, waiting for the pain to begin again, and heading to the Emergency Room for the fourth time to try to figure out why he was suffering. As we sat there, Chris and I discussed possibilities like bone abnormalities, a small overlooked fracture and even serious possibilities like muscular dystrophy or MS. But never once did tumors or cancer cross my mind. Chris, on the other hand, has since told me that he did allow his mind to go there, but he certainly did not share that with me at the time.

After an hour in the machine, I began wondering why it was taking so long. I stepped out to ask the technician when we would be done because I had an appointment to keep. The gentleman began to ask me a series of questions while offering no information. Did CJ have an injury? Did he fall? Did he have an accident? How long has he been in pain? This is when I knew they saw something on the MRI but they would not say what other than that they were getting lots of "good" pictures and they would send them to the doctor for review. I asked about my appointment and he said, "I don't think you will make your appointment so you may want to cancel it."

That is when things started spinning in my head and my stomach began to feel a little nauseous. To avoid thinking, I started making the calls and arrangements for the PE program I would now miss. I called grandma and told her it may be a while longer before we get home.and to pray for CJ. As I stood outside the room, I realized I was stalling because I was afraid to step back into that room and repeat to Chris what the technician had said. I did not want to cause him that kind of pain and I knew how desperately he would begin to worry at that point.

Finally, I realized I would not be able to keep it from him and I stepped back in the room and shared with him what the technician has asked me about injuries and said about canceling my appointment. His face betrayed my heart. We began praying immediately.

At this point, I am sure they must see an injury because why else would the technician ask me if CJ fell or had an accident? I thought there must be a fracture or severe bruising or scarring of some sort. I remembered thinking if they see some sort of back injury they they will want to immobilize him as a precaution when he is done and Chris remarked the same.

At well over an hour into the MRI, I remember praying it would end so we could just go home. Each minute felt like torture. It was hard to breathe and I was shaking. Another forty-five minutes later the technician comes in and says they need to take CJ out of the machine and give him a shot of dye in his veins so they can see better. I immediately cry out, "But I promised him no shots," somehow expecting the technician to say, "Well in that case we won't give him one." Instead, the technician stares at me blankly not seeming to care about a mother's silly promises and pushes the button to release CJ from his tube imprisoning him.

When CJ came our of the MRI tube, he was so amazing. He lay perfectly still for over an hour. The headphones they had put on him so he would have some music to distract him and help cover the loud noise of the machine did not work and although the room was freezing cold and they bundled him up, he was drenched in sweat. He looked so relieved, fully thinking it was finally over. He kept his end of the bargain. He lay perfectly still. I remember feeling so proud of him at that moment and at the same time devastated at what he was about to hear.

Then it happened. The tech told him they needed to give him a shot a take a few more pictures. He looked at me and immediately with a look of complete confusion and began to cry. I knew I had broken a promise and I knew he was just crushed because he went from being relieved it was finally over to hearing he had to now get a shot and go back in. My heart began to break right there. Little did I know just how much deeper it would break over the next few days.

I looked at my son and once again, I said, "Just one shot and fifteen more minutes in the machine and we go home, I promise." They let him sit up and gave him the shot and he immediately threw up. I can not express how desperately I wanted to scoop him up, tell everyone he has had enough for one day, and go home. It was an actual physical urge I had to fight. Intellectually, I knew I had to stay in order to help my child but irrationally I began to consider my alternatives.

We prayed with him and he began to calm down and went back into the machine. Fifteen minutes turned into thirty... which turned into forty-five. Worry and fear is really setting in at this point. We did a lot of praying and then I started replaying when they took him out of the machine in my head. I was wondering why they let him sit up so carelessly if he had some sort of back or spine injury. It did not make sense! I just could not understand what else it could be. I remember asking Chris,"Why did they let him sit up?" and he just started at me and shook his head. But the look in his eyes scared me.

Finally, the tech came in and took CJ out of the machine. I remember feeling so relieved for CJ until the man states, "We need to take him to a more powerful machine to get better pictures. It will be much quicker." And there's broken promise number two!

CJ again looks at me completely crushed and I feel terrible I lied again. Although he takes this better than the news about the shot, he begins to ask questions we can not answer and saying repeatedly that he wants to go home. We walk over to the new machine at another part of the hospital and the whole time we are talking to him to keep his mind distracted and play down the seriousness of the situation. I tell him, "Don't' worry, just one more machine and then we go home, I promise."

We finally get to the newer MRI machine and in he goes again. He knows what to expect at this point so he gets settles in quickly. Chris and I take up our stations beside him and begin praying and talking and praying and wondering and praying and waiting and praying. The waiting is physically painful. At this point there is a heavy ache in our chest that will not go away. Our minds are racing and we are having to do everything we can to lasso our thoughts with prayer and faith. We are both trying desperately to be strong for each other and at the same time remain strong for CJ.

A little over half hour later it is over and we think we are done and going home. The technician walks us back to the room where our stuff was and as I begin gathering our things he says he is going to speak with the doctor who referred us and then let us know what to do from there. This is the first time I actually think, "Wait a minute, we may not be going home." Instantly, I can see the look on Chris's face change and I realize he is really worried now and trying to hold it together.

I am still thinking they found an injury or they would not be holding us like this but at the same time I am wondering why in the world they are letting CJ walk around on his own if there is some sort of spinal injury. Wouldn't they immobilize him? Why do we need to wait for the doctor to call? There are so many questions running through my head at this point and no answers to follow.

Once again, the waiting is extremely difficult. Chris and I can not really talk to each other because CJ is sitting there with us so instead we just sat there and listened to our thoughts while trying to silently stay connected and in tune with each other.

Finally, what seems like hours later but in actuality was more like 20 minutes, the tech comes in and says to pick up the phone because they have the doctor's office on the line. I will never forget this moment for as long as I live. I can picture it clearly. Chris and I are side by side with the phone held in between us so we can both hear what the doctor says. We are clinging to the phone and to each other in more ways than one. CJ is sitting in a chair in front of us. A woman from the doctor's office is on the line and says, "Mr. and Mrs. George, the doctor has reviewed the films and he sees 'something' on the MRI. CJ is going to be taken to the emergency room and then transferred by ambulance here to Joe DiMaggio Children's Hospital. The doctor will meet you there." And along with my heart, there goes promise number three.

My head was spinning, I was so confused. What is 'something' on the MRI? I was scared for CJ and scared for Chris. I was thinking, 'what are we going to tell CJ and how in the world are we going to stay calm in front of him'? My heart was racing and my stomach was churning and I felt like I may throw up at any minute. Chris was fighting off panic internally, but externally holding it together for me and CJ. Looking back to that moment, I am so thankful we were there together. I can not imagine what that experience would have been had I or Chris been there alone with CJ.

We began walking down the hall of the hospital towards the Emergency Room, blindly following the technician. If felt like we floated there. Everything was going by so fast and I remember just wanting to slow down. I was thinking 'stop, just stop a minute'. But I couldn't seem to make it slow down so I could make sense of what was happening.

For Chris, the phone call was his moment. When he heard the words, "we saw something on the MRI," he knew how serious it was. Not me! I was still confused and thinking it would all be okay if we could just sit down a minute and talk to the doctor or someone who could explain what was going on. However, when we walked through the doors of the ER, I realized instantly how dire this situation really was. It was written all over the faces of every nurse in that room. I wish I could explain the looks on their faces. Every nurse looked at us with the strangest look in their eyes. Pity? Is that pity? From an ER nurse? It was nothing like a typical emergency room experience where no one even looks your way because they are so busy and they have seen it all before. I knew they knew something more than me and I wanted to scream, "What? What is wrong with him? What is going on?" Some looked liked they pitied me so much that I almost wanted to assure them that everything was going to be okay. It really was a strange reaction on my part I suppose, but I felt it none the less. I had never seen a nurse look helpless or in shock before but that was what I saw. I tried to read their faces. I remember locking eyes with one and begging her woman to woman, mother to mother to help me. With no words whatsoever. I really did. And it worked.

Within a few minutes she came in the room and set a file down wide open next to Chris on the counter and went over to examine CJ which I don't think she needed to do in the first place. Chris said he looked down at the file and saw a hand written piece of paper right in the open that said, "spinal tumors". Of course I am assuming her motives and in all actuality it could have been a mistake, but somehow I seriously doubt it. She was an experienced nurse. But she was also human and I believe she could see that we desperately needed to know something.... anything.

Within minutes a doctor stepped down to tell us the same news. They saw tumors wrapped around CJ's spine on the MRI and we would be transported to Joe DiMaggio where a biopsy would be performed as soon as possible to determine what it was. Oddly enough, I still never thought of the word 'cancer'. It just was not part of my vocabulary.

As we began to tell CJ what would happen next, understandably, he was very upset. He had not stopped crying since he found out he was not going home. It was more of a desperate whimper and plea for help from the only two people he trusted. Me and his dad. Once again, I was tempted to make him promises about what would happen over the next for days to reassure him. They formed in my mind but before I could utter them I realized there was only one Promise Keeper and I am not Him. And I was going to need to trust in His promises myself before I could make any to CJ.

I could never have imagined on that day of broken promises one year ago, that we would spend the anniversary recounting the true promises of our Lord, but that is exactly what we will be doing. CJ and his sister Allie will spend, September 12, 2009, the one year anniversary of that fateful day, not remembering my repeated broken promises and all that it lead to, but instead, reciting the True promises found in Scripture, as they participate in the National Bible Bee Local Competition that will be held all over our country on this special day. In this way, we will redeem a day of broken promises by standing on the promises of the One who is faithful.

Pray for CJ and Allie as they participate in this great event. Pray the Lord will bring to mind all they have memorized and studied over the past six months. But most importantly, pray they will hide and cherish His word in their hearts!

For all of you who love our lack of co-incidences, but rather, God-incidences. Check out the website to the Bible Bee. You will be completely mind blown at how it was started and who/what it was started in memory of. I signed up before I realized this. And of course, it just happened to fall on this date of all dates! Hmmm!

"My comfort in my suffering is this, your promise preserves my life."
Psalm 119:50

"Your promises have been thoroughly tested and your servant loves them."
Psalm 119:140

Quick Update:

Although they kept him isolated in a private room because of his cold, CJ's doctors allowed him to have his full dose of chemotherapy and spinal tap on Friday. He did really well and I was very proud of him. He had some special visitors in the form of two golden retrievers that he adores and adore him. One in particular met him a year ago at diagnosis and took a liking to him right away. The feelings apparently have not waned at all, as once again, she climbed right up into his bed, stretched out to full length, and went to sleep with CJ close at her side. Precious!

Some of his doses have been increased on his meds due to higher blood count results than they would like but nothing that should cause too much change or adjustment for him. Unfortunately, he did experience the itching again as a result of the chemo but was able to handle it with less frustration this time.

The Bible Bee also went really well. He wished he had studied more and memorized more verses but he decided to go without regrets and do his best on the written and oral portion of the tests regardless. We prayed before we left and headed out to redeem the anniversary day of his diagnosis on year ago today.

We received a call this afternoon that CJ placed 3rd in his age category on overall score of the written and oral tests combined at our local testing site. That was very special news and we give all the glory to God! We are thankful for the opportunity to participate in such a great event locally with the knowledge that kids all across the country were participating in the same event at the same time. It was really neat! Thank you for your prayers and support!

Tuesday, September 8, 2009

It's a Small "and Surreal" World After All

This weekend our family went from one surreal world to another in a matter of hours. Often the two worlds were interspersed and overlapped leaving a feeling of confusion as to which world we felt most comfortable in.

We left Friday morning to head up to Orlando to attend a Family Cancer Camp sponsored by the American Cancer Society. We arrived and registered into a Disney Kingdom resort along with over 130 other families from Florida who also had a child diagnosed with cancer in the past year.

As anyone from Miami knows, Disney World is like visiting another planet as it is. Everyone is friendly and smiling and welcoming and completely opposite of what we experience here in South Florida on a daily basis. Everyone is on vacation mode and kids are happy and carefree as they enjoy the magic of the Disney World experience. It s a surreal world in and of itself. Blend in 135 kids with cancer and their families walking around among them and you get a feel for what we experienced.

We could all identify each other easily enough in the crowds by the name tags we wore around our necks throughout the weekend. And if that was not enough, the bald heads, wheelchairs, and kids with limps everywhere gave us away, at least to each other. Immediately, the realization that you are not alone in this battle has the biggest impact as it saddens you and comforts you at the same time.

As we checked in and walked around the hotel, CJ, betraying my own thoughts, commented to me, "A year ago it would have been weird to see all these bald heads but now it doesn't seem weird or shocking at all." He saw kids he knows from Joe DiMaggio. We were thrilled to find out that Little Leah, who we featured as our CBC child of the month for September, was there with her family. We thought of the kids we wished were there like princess Amanda, now in Heaven, and Jia, still hospitalized and fighting after his bone marrow transplant.

The 135 families ate all our meals together for two days. We attended seminars, sessions and breakout groups all day on Saturday while the kids attended age specific groups just for cancer kids and their siblings. Sunday morning we met again for breakfast and to say goodbye as all the families were then handed tickets to visit a Disney theme park for the day before heading home.

After the sessions on Saturday I realized rather quickly why they ended the weekend with tickets to Disney World. Although each seminar was completely beneficial, full of hope, information and resources, the painful and often devastating reality of it all is unavoidable. Listening to the stories of other families, knowing the statistics, and knowing full well that some of those kids will not be here within a year is crushing. Wondering if your kid could possibly be one of them is an unwelcome but very real fear. You know each family is struggling to deal with a disease they did not ask for and were completely unprepared for. You want to talk to them all, hug them all, pray for them all, and yet are tempted to avoid and run from them all as well. It is a conflicting emotion that makes you want to reach out and shut down at the same time.

CJ was extremely nervous about the kids events on Saturday and had anxiety prior to the classes. Once he met his coaches and made a few friends he felt a little better. When we went to check on him later in the day, the coaches told Chris and I that he was very compassionate and encouraging to the other kids and they were impressed by him. It always amazes me that he manages to go from the panic stricken child to the one reaching out to all the others. But therein lies the secret to defeating anxiety.....get the focus off yourself and onto others!

Allie and Brett did well in their classes too. Allie met a girl her age with Leukemia and they became fast friends. Brett had a blast with Little Leah's big brother Jacob who was in his group. Corey is a whole other story right now as he battles separation anxiety and is determined to break his mommas heart. Chris and I attended a Lymphoma group, a late effects seminar, a learning issues class, and a moms and dads only group. By the end of the day I couldn't formulate a clear thought. My heart was heavy and my head was spinning. All the other parents looked like I felt.

I could only imagine how overwhelming it all must have been for some of the newly diagnosed families. We were probably among the farthest out from diagnosis having almost a full year behind us. We also were fortunate to have previously listened in on phone seminars in the past on similar topics which prepared us for all we heard. Had all this been 'new' to us and freshly after diagnosis, I can only imagine how overwhelming it all would be and I felt deeply for the families at that stage.

After the long day on Saturday, we rose early on Sunday morning for our final meal together in the great hall with all the families. We said our goodbyes with the reality that we will never see some of these kids again and may never know how they are doing and then we headed off to the Magic Kingdom in Disney World for the day.

As we entered our first ride, It's A Small World, and I listened to the chorus of 'it's a small world after all' over and over, I remember thinking it was a surreal world after all. Small for sure, but at that moment, it felt like we just left one surreal world and entered another and reality lay somewhere in between.

We had left a world where an 8 year old girl was diagnosed with a rare brain tumor and given a 10% chance of survival while her mom was battling breast cancer, to enter a world where wishes and dreams come true. We left a world where an 8 year old boy diagnosed with bone cancer is awaiting scan results to see if his leg will be amputated or if the chemo worked and it can be saved with reconstructive surgery, to enter a world that claimed to be the happiest place on earth. We entered a world of castles and princesses rescued by their prince to leave behind a world where a mom raises her hand to ask through tears how she would know when it is time to stop chemotherapy and when enough is enough for her child. We entered a world of smiles, laughs and thrills to leave behind the world of tears, heartache and pain. My body was in Disney World and I was happy for the excitement of CJ, Allie, Brett and Corey who had experienced their own difficulties that weekend, but my heart was still with the families we had met. I felt that same strange conflicting emotion to plunge in and experience all that was before me and yet run as fast as I can in the other direction.


CJ has chemotherapy, a spinal tap and an intrathecal this Friday at the hospital. Please pray that all goes well and he does not have the same reaction (itching) as before. or that we can figure out what is causing it. Pray for him to recover from a bad head cold he picked up over the weekend. All the kids are sneezing and blowing and we don't know if that will affect whether or not he can move forward with his chemo as scheduled if he doesn't improve before then.

Thank you for continuing to pray for him and we ask that you would include all kids battling cancer in your prayers this month. September is National Childhood Cancer Awareness Month and we would like to ask you to use this month to share CJ's story with others by email, by mouth, or by sharing our blog address and website with friends.

Don't forget to order your free chemo bags and pass them out. Visit our website at if you haven't already and please remember to register on the website. It only takes a second. If you have not read our first CBC featured child of the month check out the link above for Little Leah's story. You will be glad you did.

CJ and Sam

Brett and Peter

CJ and Joseph

CJ, Allie, Brett and Corey with Mickey and Minnie

See what I mean....surreal.