Ironic Twists of Fate

     "CJ, you have cancer not a broken leg!  Get up and come out of your room and do your school work."  I actually used to say that when CJ was on chemotherapy.  

     Did I want to let him lay in bed and feel sorry for himself and just rest his body and distract his mind with video games? Sure! Sometimes. Many times.   But I knew it wouldn't serve him in the long run.  And I always treated him like the cancer would one day be behind him and whatever was left, no matter where that was, is what mattered.  His character. His obedience. His spirit.  His education.  His future.

   But man was it hard at times. When you see your child laying literally broken physically and you want to do anything to make them feel better right that moment, you don't think about years from now. You just want to fix it then.

     I remember very early in his diagnosis coming across another mom that was at the end of her son's long treatment. She was in what we call the 'post treatment phase' when there is no chemotherapy but constant check-ups.  I had two years ahead of me and she had two and half years behind her.  Her son was about CJ's age and I thought, now this is the perfect person to ask advice, so I approached her.  

     

     "What advice can you give me as a mother as I begin this long journey?" I invited.  She hesitated.  She looked at me. She really looked at me.  I could tell she was weighing her response carefully.  I thought,  This is going to be so deep and so helpful.  I prepared my heart.  She looked at CJ.  She looked at her son. Then she turned to me and said flatly, "If you raise a cancer brat, at the end, all you will have is a brat." 

     Needless to say it was not at all what I was expecting to hear.  And it wasn't the profound advice I was bearing up to digest from a mother who just completed two and half years of chemotherapy with her son. So I just nodded as if she had said something extremely helpful, murmured my thanks, and walked away. 

   Unexpectedly, her words stuck with me.  I knew by the look on her face it took her guts to say and she thought it was important.  I began observing all the other families at the hospital and found myself looking for this 'cancer brat syndrome'.  It wasn't hard to spot.  I suddenly realized what this mother was trying to say. I needed to focus on his heart and not just react to his illness.   Even though I realized it was up to each family to decide how they wanted to handle their own parental fears, guilt, and remorse over their child's illness and pain, I knew I had an important choice to make and that somehow it would have lasting consequences. I was thankful this mother challenged me to think beyond the present.

     In the end, or rather beginning, thanks to these unexpected words from a wise mother who had been in my shoes and as a result of a lot of face time with the floor in prayer, I chose to focus more on CJ's character than his cancer.  I chose to care more about the state of his spirit than the state of his health. And I chose to prepare him for a future with the Lord Jesus Christ, not me.  If you read this blog you know very well that I did it imperfectly and failed miserably at times but I fought to keep me eyes fixed on the goal.... life eternal not life temporal. 

     It often translated into the statement above when CJ was in bed and pushing the limits of chemotherapy's effects if you know what I mean.  "Your legs aren't broken CJ! You have cancer.  Get up, make your bed and get to work."  That was four years ago and I haven't said that in over two years.

   Then, today, in some strange twist of fate, I found myself saying, "CJ, you have a broken leg, not cancer!  Get out of bed.  Get to work and stop feeling sorry for yourself."  I almost laughed out loud when I realized what I had just said.

    You have probably figured out by now that CJ broke his leg.  Badly.  He was playing hockey in his game last Saturday when he took a hit and went down.   Thankfully, the referees and the rink he skates at handled it perfectly and knew to not move him and called 911.  An ambulance came and took CJ to Joe DiMaggio Children's Hospital. In another weird twist a fate, I found myself sitting in an ambulance thinking about how I always regretted not being able to ride with him to the hospital in the ambulance when he was first diagnosed.  And yet here I was 4 years later listening to him scream in pain and regretting that I chose to ride with him instead of in the protected silence of the car behind.

 

     It has been a tough break for him in more ways than one.  No pun intended.  The break itself requires a full leg cast which is extremely limiting and cumbersome.  The pain has been pretty constant up to this point. He was actually beginning to make progress with the mobility and pain until we went in to see the doctor for the one week follow-up and x-ray.  They discovered his bone had shifted so they had to cut open his cast, reset the leg, jam some sticks in there to hold the bone in place, and then recast around it.  It hurt. A lot.

     So CJ is frustrated.  Not only because he has a broken leg but because he has a broken heart. He fought so hard to get where he was.  Healthy.  Physically ready and able to play hockey.  He played two seasons at two levels below his own age and worked so hard to get to his own league level.  He had finally made it this season and was loving every minute of it.  Then this. 

     In an ironic twist of fate I asked Someone, "What advice do You have for me in this situation?"  

     And He said,  "Focus on his broken heart not his broken leg."  Funny, how it sounds very similar to advice from not so long ago, just worded a little more eloquently.  

     So once again I choose to focus more on CJ's character than his physical ability. I chose to care more about the state of his spirit than the state of his mobility.  And I choose to prepare CJ for a future with Jesus Christ, not hockey.  Life eternal not life temporal.

Fighting the Good Fight

Today CJ walked in the door of the pediatric oncology clinic for his blood work and physical exam.  As the oncologist examined him I noticed strange things.  Like how far his legs were hanging off the examining table. And how the doctor wasn't really much taller than CJ anymore.  And how confident and comfortable he seems in such a stressful environment where kids are treated with serious and life threatening illnesses.  

But that's not what I was there for.  I was there to see if CJ's blood work revealed what I already believed to be true; that he is still in remission with no serious signs of relapse on the horizon.  Praise God, it did!  

The oncologist ordered a heart sonogram which will hopefully take place in the next couple weeks.  This is to monitor how CJ's heart is handling the "late effects" of the chemotherapy he received during his treatment.  Sadly, many children survive their battle with cancer only to succumb to heart failure or damage to other organs as a result.  There is nothing more sad to me than the child who beats this beast only to pass away because their little body can't handle the cure it was offered.  I always told CJ he would have to fight the disease and fight the cure at the same time. Now we are only fighting the cure and so far CJ is winning!

Thank you to everyone who prayed for the results today.  Please say a prayer of thanksgiving with us for this report and pray for CJ's heart to be strong and filled with nothing but the Holy Spirit!

 CJ has been fulfilling his duties as the National Youth Ambassador for Hyundai Hope on Wheels. The National kickoff in NY city was amazing and he did a great job. He is continuing to support the Leukemia and Lymphoma Society a a representative and spokesperson. He recently gave the keynote speech at the Man Woman of the Year Gala in Ft. Lauderdale for LLS as the Boy of the Year.  I will be posting a copy of that as soon as I am given one as I really want to share with you what God is doing in his young life.   In addition he is committing to another season as the Ambassador/Spokesperson for the Florida Panthers Foundation.  He is really growing in this area and I would ask for prayer for this phase of his life as he seeks to be humble and use the platform God has given him for however long God allows him to have it.  

On a personal note, I want to apologize for not being faithful with the blog and posting CJ's post treatment endeavors.  I have to be honest and confess to you that it was easier when he was sick to share what was happening in his life and use the blog to beg God openly for mercy and beg you all for prayer on his behalf.  Now that he is on the other side of treatment,  I have struggled with sharing his success for two unnecessary reasons that God has recently convicted  me of.  

One reason I struggle with updates is that I have so many friends who don't have a "success story" to share and it burdens my heart and interferes with my thoughts as I post updates so I often find myself deleting them and not posting.  I can't explain it in any way that will make sense other than the term 'survivors guilt' which I don't have but I can't think of a better term to use to define the struggle.  It is more like  'survivors mercy' that I struggle with.  What I have learned is that these very families want to hear how CJ is doing and rejoice with me in his continued healing and success.  They don't resent our survival.  The want to hear how CJ is making a difference in the world pediatric cancer and I was robbing them of that.  Thank you for the faithful parents who bravely shared this viewpoint with me.

The second reason I have struggled with posting is the fear of not coming across as anything but humble and grateful.  But God has convicted me that this side of treatment highlights HIS glory as much if not even more than when CJ was on chemotherapy.  God has shown me that this side was part of HIS plan all along.  We are not making it up as we go.  CJ's continued healing and successes are to God's glory.  His ability to share his story in powerful ways that affects people and creates change is all by the grace of God just as his healing each day during treatment was by the grace of God.  It was wrong of me not to share this with all of you who followed and prayed faithfully.    I do realize that many readers of blogs like this fall away when the "tragedy" appears over but I realize that is to their loss not ours. 

As parents, we are extremely proud of CJ's willingness to share his story.  It is not easy for him by any means.  I truly believe the enemy wants to silence him just as he always has.   We live with him and we watch the struggles he faces and the way the enemy and his flesh try to attack him.  Then we get to see the fruit of his obedience when he shares his story or his faith and we witness others "see his good works and glorify God".  That is where I realize I failed with all of you.  I have not given you the opportunity to see or share in CJ's good deeds and the fruit of what God has done and glorify God with us.   I believe your prayers were instrumental in CJ's healing and therefore CJ's good work is as much your success and the good fruit of your prayers bringing glory to God as it is ours or his.  Many of you have shared with me that you prayed that God would not only heal him but would use him.  These are your prayers being answered.

In addition, from things I have witnessed recently, I have come to realize that CJ needs prayer for this season of his life more than he ever did when he was sick and in the hospital.  There is nothing more difficult than sharing your faith and walking the fine line of "being tested by the praise of man",  or the enemy convincing you that you are disqualified from sharing your testimony.  Therefore, I am not ashamed to ask for whatever prayers I can get for my son.  Of course I love all my children and pray for them all but I have to be honest, I have never seen anything like the struggles and attacks CJ has had on his life so I will unashamedly beg for prayer in that regard.

As parents we are extremely grateful for the role models and friends God has placed in his life.  CJ was able to spend the last three days with his mentor and friend David Booth who is a professional hockey player in the NHL. But that is not why CJ loves and admires him. CJ admires his love for Jesus and openness and passion about his faith.   CJ and David got to spend quality time together these past three days at a Ranch in Florida owned by one of the most amazing families we have ever met who also had a huge impression on our family and faith. 

Much of that time for CJ was spent in a hunting stand or in a small hunting blind where David often encouraged CJ in his faith, in the Scriptures and in his speaking.  David reminded CJ that he has to use this platform that God has given him faithfully for however long he has it. Thank you David for investing in CJ in this way.  Not just with your time, talents and treasures but with your words.  You cannot know how perfect the timing was for this in CJ's life and current struggles.  Everything you did for him was special but nothing means more to us than the words he tells us you shared with him and the encouragement you gave him to trust, follow, and obey God at all costs.  And thanks for sharing the Arruza family with us.  What a priceless gem they are!

So as CJ continues to....  

"fight this good fight of faith" (1Tim 6:12) and "puts on the full armor of God, so that when the day of evil comes, he may be able to stand his ground, and after he has done everything, to stand..." (Eph 6:10)

Will you.... 
 

 "Pray also for him, that whenever he opens his mouth, words may be given him so that he will fearlessly make known the mystery of the gospel,  for which he is an ambassador in chains. Pray that he may declare it fearlessly, as he should."  (Eph 6:19)

                                                                CJ and David Booth

I believe I threw a little teaser out there on my last blog that I had some exciting news to share with everyone. Well I can't wait anymore. I decided that I am going to let you in on the secret a few weeks early. The official announcement of what I am about to share with you doesn't go public until April 5th but I know I can trust my faithful blog followers to not post this news on facebook or anywhere else until April 5th!!!

First a little background....

As many of you already know CJ has served as the Ambassador for the Florida Panthers Foundation throughout this past NHL season. That relationship developed over the previous year as CJ served as their Honored Hero for their Light the Night Team. The Florida Panther Foundation is committed to supporting the pediatric cancer community and so are we so let's just say CJ and the Panthers make a great team and because of that they extended him the invitation to be their first ever Ambassador to represent their foundation's mission. As such, CJ participated in the foundations signature events. He was the keynote speaker at their Face Off Gala, was a part of the auction at the Ice and Dice fundraiser, did hospital visits with a player, and served as a junior reporter at the Foundation Golf Tournament.

Golf Tournament http://video.panthers.nhl.com/videocenter/console?catid=93

Then, a couple months ago I received an email from CJ's oncology clinic. In short, they were encouraging me to submit an application for CJ to serve as the National Youth Ambassador for the Hyundai Hope on Wheels program. They felt CJ would be an perfect fit for this position and already had experience because of the FL Panthers.

I was already familiar with the Hope on Wheels program because CJ had participated in local events when Hyundai came to South Florida during his treatments and I already knew I believed in what they are doing. In short, they grant millions of dollars to children's hospitals, clinics, and researchers across the country every year for pediatric oncology. I read about the position and learned that the youth ambassador position lasts two years and includes traveling with the Hyundai Hope on Wheels team across the country speaking at events, hospitals, Hyundai dealers and even in Washington DC. It is a huge commitment and an even larger opportunity. After receiving the email, I read more about it, prayed and entered CJ as an applicant for the position.

By now, you probably know where all this is leading. YES!!! After a national search, Hyundai has selected CJ as their NATIONAL Youth Ambassador for their Hope on Wheels Program for the next two years. They called and extended the invitation and supplied us with even more information to help us consider our answer.

After a family meeting and honest discussion, CJ accepted the position. He knows this is a huge commitment but feels like God has opened this door to this next step for him. Hyundai is not just interested in using his face on a billboard and his story as they travel across the country. They want his voice and his message. He will be traveling with them, speaking, encouraging and motivating both kids battling cancer and those involved in the Hope on Wheels program.

Interestingly, we also met with the Florida Panthers Foundation who wrote a wonderful letter of recommendation for CJ for this position. They also plan to keep CJ as their ambassador for the future season and are thrilled about his position now as a National Ambassador. Their support and encouragement means a lot to us.

As a result of his acceptance, last week we traveled as a family to California to the US Hyundai Headquarters where CJ delivered an introduction speech to the 350-400 Hyundai employees. He did amazing and we are very proud of him. If you have ever done any public speaking on any level I think you can relate to how nerve wracking, anxiety filled and emotionally draining public speaking can be. CJ has become more and more comfortable with this is the past two years as he has spoken at many many events from corporate meetings to large Gala's, schools and churches. But this was definitely the farthest he has ever traveled to speak and since this is a National position we know it is going to come with its own set of new challenges.

So here is the neat part and the big reveal. It is also how I knew God was 'in this' and pleased with our decision. I often ask for clues or a little sign of confirmation in my spirit or visually that will help me know we are on the right track and that God has covered it with His blessing. This is how I believe God chose to do that for me in this situation...... April 5th is CJ's 13th birthday. Well, April 5th also just so happens to be the the exact day that Hyundai goes public with their announcement at the New York City International Auto Show. They have invited the whole family to come and participate and CJ will speak at the event.

After that, the show literally hits the road between April and September ending full circle back in NY City at the very end of Childhood Cancer Awareness Month. During those 6 months, CJ will commit to traveling and speaking in a minimum of 6-8 cities throughout the country representing the Hope On Wheels Program and sharing his story. And then do it all over again next year to all new cities.

So that is the big and exciting news. I just couldn't wait for it to go public to tell everyone. Once it goes public we will begin sharing more and posting updates and information publicly on facebook as will the Hope on Wheels campaign. On April 5th all their Hope on Wheels material will switch from their previous Ambassador over to CJ. All Hyundai dealers across the country will have his picture and materials in their stores. But most importantly, CJ will be sharing his story of healing and hope with hundreds of kids across the country battling cancer encouraging them in their battles.

Thank you for letting me share this exciting news with you. What I would want most is that you rejoice with us but that if you are willing you continue to cover CJ in prayer for this next season. He has not shown an interest or asked to stop sharing his story although many kids do after such long treatments. He seems to realize it is important and that... to whom much is given, much is expected. CJ knows he has been given much.

Secondly, I would ask that you keep in mind what the Lord has done here. Don't look at CJ and think, Wow! what an amazing young man. Look at God, and say Wow! What an amazing God we serve. REMEMBER...CJ was an anxious, shy, panic ridden, and extremely sensitive young boy before he was diagnosed. He also spent much time in speech therapy because most people could barely understand him. It was frustrating and if anyone told me then he would be a powerful public speaker effecting people's lives at the age of 12 I would have laughed pretty boldly and confidentially in their face.

God has used a serious trial to transform and mold him into a young man with a message and equipped him to share that message. No, He hasn't removed the fear or the anxiety but taught CJ how to deal with it and lean on Him for strength. That's not to say the old enemy doesn't come calling. There have been a few moments where I would have went toe to toe with the devil to get his hands off CJ if God would have only removed the veil so I could actually see him to get my hands on him. Obviously, God knew that wasn't such a great idea and my protective angry mommy heart was feeling a little more brave than it rightfully should with a request like that.

Those reminders are good I suppose because no matter how far CJ has come, I still stand amazed every time I sit in a room like I did last week and see CJ take the podium and deliver a well spoken clear and powerful speech. I don't see CJ standing there. I see an amazing God. I pray you do too.

And remember....Shhhh!!!! Until April 5th!

In a Loud Voice

CJ had oncology appointment this week. He had full blood work and a physical check up to continue to monitor his progress off treatment. We are grateful to announce CJ remains cancer free and in full remission. Praise God... "in a loud voice."

I especially liked the comment his doctor made as she examined him that went something like this, "The further he gets out of treatment, the less likely he is to relapse." That is great news of course but I caught myself thinking it like this, "The further he gets out of treatment, the more likely he is to forget."

Complete physical healing is a tricky thing. Complete healing often means there are no recognizable outer marks that distinguish you from anyone else. No one will look at CJ and say, "Wow, look what God has done," because he looks like any other kid his age. I am not trying to be insensitive. I am extremely thankful that God chose to heal CJ without further complications and I know many of my friends whose children have amputees or some other physical evidence as a result of their treatment would probably trade places with us in a second. However, I can't help but feel like the evidence of what God has delivered them from is always present and a constant reminder to them and at the same time speaks as a loud testimony to others who encounter them. CJ's testimony is in his heart and mouth.

I met with another mom this week whose son went through treatment for Lymphoma with CJ. Like me, she struggles with this new phase of life after cancer as if it never even happened. She was at his flag football game earlier that morning and she described the struggle of standing there on the sidelines watching and knowing what a miracle she was witnessing and how it has impacted their lives and yet there is no physical evidence of what they went through as a family. She finds it hard not to talk about it and share it with the other moms watching the game. I could relate to everything she said and the post treatment struggle she was dealing with. And it makes you wonder how many miracles we witness everyday we never even notice.

So it has me thinking. Why are some struggles we face left with physical evidence like Jacob who walked with a limp after he wrestled with God and others like Paul who had a thorn in his flesh to constantly remind him of Gods grace on him, while some just take up their mat and walk. If you never encountered the blind beggar before he was healed you would have no reason to glorify God upon meeting him, unless he shared his testimony with you.

Then this morning I was reading Luke 17 and something new jumped out at me. Jesus healed ten men of leprosy from a distance. This appears to be a complete physical healing from a very obvious outer affliction. Upon receiving the healing only one of the ten men returned to Jesus praising God "in a loud voice" thanking Him. But that statement "in a loud voice" seemed out of place and important. Why "in a loud voice?" Jesus could hear him perfectly well. Furthermore, we know now that Jesus could hear his thoughts and knew them before he even thought them so why was it recorded for us that the man returned and praised God, "in a loud voice?" Why is that there in this account of the healing?

As I sat there pondering this I felt like God was saying it wasn't about Jesus. The man wanted others to hear. For me it was significant because it reminded me that although we don't have any physical evidence of the healing CJ received that would stand out to others, we do have a loud voice. That loud voice is for the benefit of others not Jesus himself. Jesus hears the volume of my heart no matter how loud my voice is. My voice is a testimony to those that overhear and give glory to God.

Tonight is our first meeting for the Man Woman of the Year Campaign for the Leukemia & Lymphoma society for which CJ has been asked to represent the campaign as Boy of the Year alongside a very special Girl of the Year named Hailey. This is a fun campaign where men and women race to raise funds through events and donations during a set time frame. The top male and female fundraisers are named Man and Woman of the Year at an exciting Gala that ends the campaign. Tonight I will share our family's story at kick off and CJ will speak "in a loud voice" at that Gala. I pray it echoes loudly reminding him and others of what God has done.

"One of them, when he saw that he was healed, came back, praising God in a loud voice. He threw himself at Jesus' feet and thanked him."
Luke 17:15,16

A Blessed Mess

It is hard to believe that I have not updated this blog since September. I would do a detailed recap for you but to be quite honest the holidays and final months of 2011 were a blur of activity. Everything seemed to move so fast and every spare moment was spent .....um .......well .....let's see......
There weren't any spare moments or else I would have updated this blog!


Probably the most significant change for our family since I updated last came in October when my niece Jerri-lyn, who had been living with us for almost 16 of the last 24 months, was reunited with her mother. As the court ordered, we drove Jerri and her brother back to Gainesville, unloaded all their possessions, and said our good-byes.

As we drove away, I had a pit in my stomach but complete peace in my heart and mind that this was completely God's plan for her. I am so proud and thankful to say that my sister is doing amazing and becoming an excellent mother. With God ALL things are possible.

That change was significant for our family in that once we returned home we realized it was the first time we were together as a family unit in over three years without any crisis pending. CJ was in remission and completed treatment, Poppa Enzo had passed and was no longer suffering, my girlfriend was cancer free, and Jerri-lyn was reunited with her mom. As a result, I guess you could say we........overreacted!

It was like we were kids let loose in a candy shop after staring at the goodies that were off limits for far too long. We immediately took some trips, hit some theme parks, went camping, and felt free to come and go without checking first with doctors for CJ or social workers for Jerri-lyn. It was an unfamiliar but good feeling after three years. Then the holidays bore down on us way too quickly. Thanksgiving was spent in Virginia, Christmas was a blessed mess, and now it's 2012. How did that happen?

Like I said, it's a blur. But a blessed blur! I had to keep reminding myself of that when I was overwhelmed, frustrated or resented the craziness of the season.

It doesn't take much to remind myself how fortunate my blessed mess was though. I thought of my friend who was spending her first Thanksgiving without her son. I knew they had not even sat at the dining room table since he passed several months before because they could not stand to look at his empty chair. How would they eat Thanksgiving?
I thought about sweet Madelyn who passed away Nov 26th after a long and rigorous battle with cancer. Her funeral was one of the most meaningful things I experienced during the entire holiday season. I saw Jesus more at that funeral than I did on Thanksgiving and Christmas combined. Why is that?
I thought of my friend who lost her son just before Christmas in an unexpected tragedy I was all too familiar with. I hated that I could identify with her pain and yet at the same time I was so thankful that I could.

Focusing on all those things helped me get my focus on Christ. He wasn't just a baby in a manger for me this season or someone I gave thanks to before a ridiculously abundant meal. He was the One who sat in the empty chair that Thanksgiving and comforted my friend. He was the One we saw as Madelyn's mom and dad spoke at the funeral and shared how she lead them and so many others to Christ during her battle. He was the One holding up my friend after a loss that should have crushed her, providing a peace the world marvels at and we can't even comprehend ourselves.

So here we are in 2012. I can't help but wonder where I will see Him here. I know it won't be where I expect.

So far this new year, CJ remains in remission and goes to the oncologist every two months for blood work and a physical. Every time he gets a clean bill of health....I see Jesus.

He is still playing hockey with his little brother Brett and they enjoy every minute of it. Every time I see him glide across that ice....I see Jesus.

He recently filmed a commercial for the Joe DiMaggio Children's Hospital and he continues his role as the Ambassador for the Florida Panthers Foundation. His role as such has been to speak at events, raise awareness by sharing his story, and put a face to the mission of the foundation. Every time he stands up a speaks at an event..... I see Jesus.

He will be doing a hospital visit with the players and he is gearing up for the St. Baldricks event in February where he will be shaving his head alongside some of the Panthers players. This is a big deal because the last time he was bald he had no choice in the matter. He knew it said something about him. Now, he chooses to shave his head to raise awareness and it is him saying something about it. I have a feeling when I look at his shaved head... I'll see Jesus.

His work as the Florida Panthers Ambassador will be featured on a televised spot called Inside the Panthers. I will try to let everyone know when it will be on. I am really proud of all that he has accomplished and how he continues to give back to the community. He has an amazing opportunity on the horizon that I can't wait to let everyone know about once I have a little more information. So keep posted and check back soon.

In the meantime happy new year to you. I pray it is a blessed mess and that you see Jesus in the least expected places.