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.
Thursday, December 13, 2012
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.
Thursday, June 21, 2012
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!
Wednesday, March 7, 2012
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.
And remember....Shhhh!!!! Until April 5th!
Wednesday, February 8, 2012
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.
Tuesday, January 24, 2012
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.
Saturday, September 24, 2011
After the results were in, the doctor came pulled up the blood work on the screen which includes at least 6 different markers including white blood cells, hemoglobin, platelets, neutrophils, etc. He began reading them off and stated, "Everything looks great!" He told CJ they were all "normal". Now keep in mind that CJ is used to having blood work that is 'normal' for him, or 'normal' for what he is going through, or 'normal' for a cancer patient, or 'normal' whatever stage of treatment he was in so I thought it was quite cute when CJ asked him, "So is that normal for me or is it just normal?" The doctor replied, "This blood work is normal for anyone."
Praise God....CJ is now a 'normal anyone' again! At least according to his blood work, which is about the only place I want him to be a normal anyone ever again!
So what has changed as a result of this great news? Based on the original statement I would say it is safe to assume that CJ's percentage of relapse decreases after the first year off treatment. In addition, CJ will now go in for blood work and a physical every two months instead of every month. Those are great changes and we will take them. Thank you Lord!
As I walked out of that hospital with CJ that day, and we waited for the car, I found myself trying to picture us walking in and what we were like three years ago. I have to be honest, I don't even recognize those people anymore. I could not help but wonder what they would be like today and where they would be if the last three years never happened. It was like I was imagining someone else's life that I once knew. Sounds crazy I am sure but I am just the reporter of what this strange mind concocts.
What struck me as extremely powerful was the sheer vastnass of all that has happened to our family in the three years between CJ's diagnosis to CJ's final port removal. I was sort of frozen with the thought of it all. I was sharing this with my mom later and she said, "That is why we don't know the future." That simple statement has really stuck with me all this week.
I think of all the times I have said, I wish I could go back and do it over knowing what I know now as who I am now. Actually, I said that as recent as this week to a friend who is in her own battle with cancer.
But to be totally honest, when I think back to my absolute worst day in all this, the day that I felt most crippled and terrified by all of this was the day the doctors and the chemo counselor sat me down to 'prepare' me for what the next two years of my life would look like with CJ on treatment. It was the day I crumbled. I was terrified. I felt helpless. I felt hope drain and could not get a grasp on how we would get through the next two years of chemo. Just hearing all that was "going to happen" was devastating.
Can you imagine if she would have also said, "In addition to all of that that you are going to lose your father who you have just gotten extremely close with again, you are going to lose your step father and hold his hand as he passes, you are going to gain and lose a Godchild you will adore and hold her little hand as she passes, you are going to come to love many kids and families and then attend their funerals, you are going to take in your niece and nephew (twice) to live with you because they will need a home, and you are going to sit next to the last person you'd expect, oldest friend you have while she gets chemo."
"That is why we don't know the future," echoes in my head.
As I walked out of that hospital I realized I can't change all the terrible things that happened in the last three years. I can either live in fear of the unknown based on what has happened, or I can live with the knowledge that no matter what happens God is for me and will work all things for my good. I can either think about all the tremendous loss we have experienced, or I can appreciate all the amazing kids and families we have met and had the privilege to know and love. I can either think about all the people that disappointed me or hurt me during this, or can I be grateful for all the blessings God poured out on our family through the most unexpected people. I can either dwell on the cancer statistics and hide from the pain of pediatric cancer and the suffering surrounded by it, or I can focus on what I can do to help just one family today. I can wonder what CJ and the rest of our family would be like without all these tragedies as part of their life and be terrified of their future, or I can rejoice in who we are because of them.
I assume you can imagine which one I am choosing. And I assume you can imagine the consequences of either. Just take a look around you.
After the appointment, I drove home with my "normal anyone" sitting next to me who is anything but normal and I rejoiced in his presence next to me. I thought to myself, three years ago, unbeknown to me, it was Childhood Cancer Awareness Month when I walked through the doors of that hospital to discover my own child had cancer. Three yeas later it is once again Childhood Cancer Awareness Month and I am walking out a different person with a different child. I am now extremely aware of the significance of the month, the suffering, the cost, the loss, and the loneliness. But I am more aware of my Savior, my blessings, my faith, my hope, and the ultimate cure to all of this..... Jesus Christ!
I can either live in fear for the next three years and wonder what they have in store, or I can rest in the knowledge that....
The reason I know that Scripture is true is not because CJ is alive and cancer free, we are financially stable, and we have hope for the future in sight. The reason I know it is true is because that statement can be made and is made just as confidentially by my friend Tabitha who just buried her son Nick a couple weeks ago and is struggling with the finances to even purchase a headstone for his grave site. And it is made by so many other amazing moms I know that have buried their children. That is how I know that I know that it is true. I live it and see it lived out every single day by way more amazing people than myself.
So my "normal anyone" is doing great. He has become the Ambassador/Spokesperson for the Florida Panthers Foundation which focuses on pediatric cancer. They just released a clip of him on their home page. Be sure to check it out at: http://panthers.nhl.com/club/microhome.htm?location=/PanthersFoundation It is a short clip but worth the peek. He will be speaking at all their signature events beginning with the Gala on October 4th. Last month he shared his story at the corporate headquarters of a Bank to all the Branch Managers. This month he spoke a the Hyundai Hope on Wheels presentation. And next month he will featured as the Make a Wish Child at the Applebees in Hialeah. So much for 'normal anyone'.
But those are not the things CJ would want me to share with you. He would want me to tell you that he has his first Hockey game tomorrow. He is extremely excited. We are extremely proud. Seeing him on the ice is amazing after all he's been through. We had quite a surprise when we went to his practice last week and one of the players on his team came up to him and said,"Hey CJ, your picture is on the boards." And sure enough, it was right there on the boards surrounding the ice where the Florida Panthers practice. Even more exciting, he is on the same team with his brother Brett and we know this is going to be a season they will share together and a special brother bonding time they will never forget.
Please do not forget that September is Childhood Cancer Awareness Month! These kids deserve the attention and the awareness. It is still so slow in coming and I hope in the coming years we see more progress. Gold is the color for childhood cancer. Gold ribbons for our not so normal someones!
Monday, August 29, 2011
It has been a long month. One filled with more loss than most people experience in a lifetime. I don't even know where to begin.
After a 22 month battle with cancer, "Poppa Enzo" passed away on Tuesday, August, 16th. During the final days, there was plenty of time for the family and friends to come and say good-bye. CJ stood over his bed two days before he passed and said, "I love you poppa." I hated that he had to see up close and personal what cancer can do physically to a body and know he came close to experiencing that.
I won't go into detail about those final days because if I said they were beautiful and peaceful and there was no pain or suffering or questions I would be lying. That's not say there were not some very precious moments. They're were. But if I described it with any honestly at all it would only serve to leave you heartbroken and confused. All in all, it all boils down to this.... regardless of our circumstances and what appears before us, we walk by faith and not by sight!
If I walked by sight I can tell you right now I would be devastated.
Unbelievably, the week that Enzo passed we lost three cancer kids. THREE! Ethan Jostad, Bo Story, and Abby Smith. All were very young children. I felt so heartbroken and yet so incredibly selfish because I was so thankful that CJ was healthy and playing outside as death hovered over this house and the house of so many precious children. Childhood cancer is beyond devastating. The facts alone would crush you. The reality of it is even worse. Many ask me how we stay so immersed in it? We walk by faith and not by sight.
As I sat and held Enzo's hand watching him take his final breaths, I could not help but think of Mackenzie whose little hand I held just 6 months before as she took her final breaths. I could not believe it was only 6 months prior. I felt like I had lived a lifetime in between. I honestly began to wonder if my kids were ready to handle this again.
We had Enzo's funeral the following day and I sat there looking at my little 8 year old Brett as he walked over to the coffin, stopped, and began to cry. I remember thinking, Lord, please work all things for good....even this. Even an 8 year old boy standing at his second grandfathers coffin in less than two years. Did I really bury my dad less than two years ago? And now I am burying my step father. I felt like I had lived a lifetime in between.
CJ was in the car with his grandma Paula (my mom) the other day just before Enzo passed and they were chatting. My mom told him that when she was his age she had never even known of anyone who died. He just looked at her trying to make sense of that reality and said, "I can't even imagine a life not knowing of cancer and death." He knows so much of it. He's 12.
Unfortunately, as much as I would have liked to have shielded him from further loss and say I thought this would be the last for a while, I knew he was about to know more of it. Our sweet friend Nick Patrick, age 15, who was battling cancer was not doing well at the time. I kept praying selfishly that the Lord would wait. We were not ready for another blow. But the Lord's time is set and Nick went to be with Him yesterday morning. I dreaded telling CJ and the rest of the kids. We had just spent a wonderful weekend with Nick and his amazing family a little over a month ago. Was that really only a month ago? I felt like I had lived a lifetime in between.
I hate to end this blog here. I know there should be some big lesson in it. But I don't have one other than to say, "we walk by faith and not by sight." So instead of any words of wisdom which I certainly don't have, I am going to leave you with what I honestly believe 15 year old Nick would tell you if he could say one last thing.......First, I think he would really be tempted to crack a joke and leave you laughing as his final farewell. But based on what I know of him and of what he believed and experienced, and based on where he is now, I think if Nick could say one thing it would be this.....
And I leave my fellow blinded sojourners with this....
"We walk by faith, not by sight" (2Cor5:7)
Thank you to everyone who made donations to CBC in memory of Enzo Alibrandi in lieu of sending flowers. It will be a blessing to many families in great need and honors his memory greatly.
Wednesday, August 3, 2011
Some were only 2 months into the battle while others were 7 years in and still fighting. Some were still on treatment. Others, like ourselves, were making the transition into life off treatment.
Each family is etched on my heart and brain. Ever since I got home I have not been able to stop thinking about them. It has been difficult to transition back into the flow of life. I wish I could give you a glimpse into this retreat. How can I explain that this world of childhood cancer is the most horrific experience and yet most rewarding privilege of my life? The deepest darkness accompanied by the most brilliant light. Does that make sense? Their stories are truly life changing. Dare I share the details? Would you listen?
I listened intently as one young mother shared about her battle with breast cancer. She not only lost both her breasts but when it spread to her cervix she lost so much more. Multiple surgeries. To the brink of death and back. As she shared her story, the fear, grief and honesty was so real you could taste it in your own tears and feel in your own heart. I already knew the rest of the story; I just never could have fathomed the beginning. Within months of her own battle, her young daughter was diagnosed with a serious brain tumor that turns out to be cancer. Why Lord?
Then there was the family from generations of boys who continued that tradition with the birth of two sons. They prayed and wished and hoped for a precious little girl to bless their masculine and rambunctious world. God delivers. But by two months old she is fighting a serious and aggressive form of cancer that is ravaging her little body and threatening her very femininity. The little pink dresses and ruffles become a source of pain instead of the joy they expected. Really Lord?
How about the family whose daughter was diagnosed with an incurable form of cancer. Literally incurable without God's miraculous intervention. A brain tumor attached to her eye. Always lurking. Always threatening. Treatment will never end. They will always have to stay one step ahead of it. That's burden enough. Yet during their daughter's treatment their son is diagnosed with Crohn's disease. Also incurable apart from God's hand. Always lurking. Always threatening. Treatment will never end. For how long Oh Lord?
Then there is the beautiful little girl who was born premature. As a result, she was severely brain damaged as an infant. Her little body and young life full of surgeries and challenges. Nothing is easy. Every breath and milestone fought for. Now liver cancer? Help me understand Lord?
Should I go on? How about the little boy diagnosed at age two. He is now 9. Three relapses. Still battling. He knows no other life than battling cancer. Neither do his three younger siblings born into this life that they think is normal. These are your people Lord. Servants in the ministry. Even them?
Or maybe I can tell you about the 17 year old girl whose body has been so consumed by the caner and the treatments that it is not her own. She has had to surrender it to the treatments to save her life. Her hair, her weight, the scars, her inability to walk well because of the nueropathy. She's 17! Female at 17 while healthy is hard enough- is it not Lord?
What do you think the doctors told her mom when her daughter had a fever and she feared relapse? "You're just paranoid. It's just a fever. Life is normal now. You need to stop worrying so much" Wrong! It's back to their 'new normal' again.
There are more stories but I am afraid your heart would burst if I go on. Then you will end up like me...trying to process it all.
How about I just go straight to the elephant in the room all week? Or rather...not in the room? I have never felt someone's absence become a very presence like that before. For the families there that had returned from the previous year, we did not know how long we could avoid the topic. Would it upset the new families? Could we even handle it? She was a whisper of the heart at first. Then she was a tear shed from a memory. Then she was the lump in our throats. She is a silent fear we all carry. Vibrant and full of life last year but glaringly absent this year........Mackenzie.
Dare we look around the room and wonder if one of these children will be the absent-presence next year? I could not help but think....what if they are all gathered here next year without us? Would they mention CJ's name or would he become the silent pain they all carried?
From darkness to marvelous Light. Focus on the Light instead....
There was Creed. Creed, who coded twice this past year. Creed, who not only went beyond the brink of death and back but firmly into its clutches....twice! Creed, who should be brain damaged...but isn't. Creed, who jumped on stage and sang, "Glory to God Forever" at the top of his lungs while pumping his little fists in the air. When he sings the lyrics... "take my life, let it be, all for You and for Your glory. Take my life, let it be Yours" you better believe he knows exactly what he is saying and sacrificing. He's 6 folks. He exudes Light.
Focus on the Light....
We watched couples go from the brink of divorce on day one to the commitment to take that word out of their vocabulary by day five. We watched people lay bitterness and resentment down for their loved ones who just could not "be there" or weren't equipped to support them during their battle. We saw forgiveness flow for those who abandoned them at their neediest time. We witnessed parents turn the outcome of their child's battle over to the Lord and realize they are not the ones in control no matter how hard they try. We watched as husbands actively sought how to better support their wives through this trial. We listened as a couple shared about a restored marriage. We saw people become more interested in God's glory than their comfort. We witnessed people discover they were not alone, never alone.
From darkness into marvelous Light.
And that is just the cancer families. I have not even mentioned the ones that blow me away even more. Yes! Even more brilliant are the families spending the week serving our families. Talk about Light! Who do you think watched our kids while we had those sessions? Want to pay your own money to spend your own week's vacation serving a bunch of cancer families. Want to get your heart attached to someone you may have to lose? Want to have to stare suffering in the face? Want to cook for 150 families? How about clean up after them? Want to lay your life down for your friends? How about strangers?
You want to know Light. Meet my amazing friend Cheryl who suppressed her own broken heart over the loss of Kenzie and came to the Lighthouse knowing she would once again be opening herself up to the possibility of more pain. I could see the caution written all over her face. But when you have that deep of a servants heart it is impossible to stay away. She came, she served. She reflects Light like I have never seen before.
Just in case you missed it, I am going to end this post with the most amazing story. I still can't really believe it myself. Get ready because this one is really unconventional. This one challenges me and so help me God...it will change me as well!
Each family is assigned a family partner. These are the people I told you about that pay to come spend their own personal time off work or school to serve our families. They cook, clean, wash, play with our kids, give piggy back rides, do silly talent shows, make our beds, wash our clothes, carry our luggage. Should I go on or do you get the point?
Sometimes it is a family assigned to each cancer family just like we had last year. However, this year we had a single woman along with some of her youth volunteers from her church small group that she leads. So she was not only serving our family but also serving and caring for them I expect as well. I met her last year at the retreat and have kept in touch sporadically throughout the year. This year she was back again and we were pleasantly surprised to see a familiar face assigned to our family. Her name is Angie, but it is definitely misspelled. It should be Angel.
You see, I found out on day three from another friend that just a couple months before the retreat Angie was diagnosed with Stage 4 breast cancer that has metastasized to her lymph nodes, spine and hip. Did you catch that? Stage 4 metastatic breast cancer. You think there was time to back out? You think everyone would completely understand? You bet! But not Angie! For her, there was just enough time to accept the diagnosis, get a port installed and start some hormone therapy to prepare for her upcoming chemo, radiation and surgery just before heading out to serve at a pediatric cancer retreat. And she is assigned to my family of 7!
Guess who carried my 50 pound niece around on her back all week in 90 degree weather? Guess who made my family's beds all week? Guess who did my family's laundry? Guess who carried my luggage? Guess who played with my kids so I could relax? Guess who left me encouraging notes in my room each night assuring me of Gods love and care for me? Guess whose laughter I heard the loudest each day over the kids? Guess who reflected more Light to me than I have ever seen?
"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.”
"For God, who said, “Let light shine out of darkness,” made his light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ. But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us." (2Cor4-7)
(2 Sam 22:29)
Angie in the front center with my Allie in green and more girls!
There's Jim serving breakfast.
That's Jim again. He doubles as a playmate for my boys when he is not cooking.
Allie and Creed
CJ is officially port free, chemotherapy free and cancer free!! Praise God!
I have not officially blogged about it because I have not been able to adequately describe the feelings that have followed the port removal and I certainly did not want to come across as anything but grateful. We are extremely grateful!
It has almost been three years since CJ was diagnosed with cancer. Three years! That is a long time! He was 9 years old. Now he is 12. He was a boy. Now he is a young man. This has consumed a large part of our lives. A surgery, a song, and a see-ya-later just felt so......odd. And if it is over....why does it all still feel so....incomplete?
Early on I wrote a blog comparing our experience to the phases of a hurricane. I realized this week that the description still fits. In the beginning all we could do was brace ourselves for the storm and hope for the best. There was no evacuation route. We did not know how much damage or loss we were going to suffer. Fear and anxiety defined that phase.
Before long we were in the “eye of the storm”. It was an eerie calm we experienced about half way through. It felt like a false sense of security considering the backside of any storm is typically stronger than the front. It provided a time of much needed rest but it was also the time frame that our eyes began to open to all the suffering surrounding us besides our own. Uneasiness and deep sense of sadness defined that phase.
Now the storm is over. It’s time to step outside and access the damage. The “aftermath of the storm”. How do I describe these feelings? Does it depend on how much damage was incurred? Does it depend on how long the storm lasted? Does it depends on how much was sacrificed along the way? I am not quite sure yet what feelings define this phase. Relief? Yes! Regrets? Some. Responsibility?...or is that a hint of guilt? Gratitude? For sure! Determination?Definitely!
The storm has brewed up a cocktail of emotions. The damage could be much worse but it could be better. Does that balance matter. There is always worse. What is more important to come out intact? Our bodies? Our hearts? Our Faith? Can I have all three or is that asking too much?
CJ's body and our lives may be moving farther away from the battle but my heart is still deeply entrenched there. Do I even want it back?
CJ grows stronger...poppa Enzo wastes away. So much irony. Should we celebrate life or prepare for death? Do both? How? Tell me how.
How do I access the damage? So far this is all I have........
"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed."
(2 Cor 4:8)
Tuesday, July 5, 2011
I can honestly tell you we are all excited yet quite nervous about this step. We thought CJ would be nothing but eager to get the port out but he confessed to us that he is nervous because the port has been a part of him for so long. It represents so much to him.
At first he hated it. He was terrified of it. He fought with it. He suffered pain because of it. He felt restricted by it. He resented it. He tried to ignore it. He hid it! Then, overtime he realized it was there to stay. He worked at accepting it. He tried to understand that it was a blessing. He got to know it. He began to appreciate it. And to our amazement, he began to share it with others and use it to share his story.
I vividly remember standing in the Miami Bankers Club and the Hyatt Pier 66 only a few months ago as CJ spoke at corporate breakfast committee meeting for LLS and he slowly lifted his shirt and showed his port as he told his story. That was a huge moment for me as CJ's mother and friend. I knew that no one in that room could appreciate the full circle of what they had just witnessed. But I knew how huge that moment was. I knew what it really represented. It represented CJ surrendering to God's plan for his life regardless of whether he liked it or not and realizing it wasn't only about him. It was about what he could do to help others.
I hope that explains the bitter sweet taste we have as this port is removed. He has grown accustomed to it being there. It represents a great deal of this battle for us. And quite frankly, CJ is simply not looking forward to surgery. I don't blame him one bit! I am not exactly looking forward to the feeling of watching him be wheeled away to the operating room while I sit in a waiting room to hear the all clear from the doctors.
On that note, I am asking for prayers for CJ to be prepared for this big step in continuing to move forward in his healing process. Prayers for a safe and successful surgery with complete port removal. I have learned recently that some kids bodies begin to calcify the port as a foreign object and therefore removal can be difficult. They will often leave parts of the port in because it is more risky to force them out if the body has calcified it in any way. We would prefer complete removal so we are counting on this port to continue to be good to us. Hopefully it is not as attached to us as we are to it!
The bitter sweet taste we have towards the port removal is only heightened by the circumstances we are facing as a family. As we prepare to move forward with CJ's port removal and take another huge step further away from his cancer diagnosis, his poppa Enzo just received the extremely difficult news that the chemos are no longer working for him. This weekend he made the transition from treatment to Vitas Hospice Care. They are currently working with my mom and Enzo to regulate his pain and keep him comfortable.
Therefore, as we rejoice and celebrate CJ's recovery we are trying to prepare our hearts for the inevitable. Please pray for my mom, Paula, and for Enzo. I spent the last couple days with them as they made the transition and my heart aches for them. The only words that come to mind as I sit here and stare at the screen trying to think of words that would adequately portray what it felt like being with them are.........beautifully broken.
This weekend was a perfect example of that. We had an amazing trip given to our family as a gift and we had the opportunity to spend it with a very special family from Georgia. This is the family of Nickodemus Patrick who was recently featured as a CBC child.
Nick has an extremely rare form of brain cancer. He is literally fighting for his life. Actually, Nick would probably disagree with me on that statement. Knowing Nick, he would probably say, No, I have placed my life in God's hands and He is fighting for it. I am just along for the ride.
Nick has already been to the very brink of death and back. Regardless, the doctors are quick to remind his mother that Nick is still considered "terminal". I am quick to remind her that God says he is "eternal".
So I end this blog like I feel.....beautifully broken. Preparing and rejoicing with CJ for port removal; praying and mourning with my mom and Enzo for Gods peace; and hoping while still trusting in God for Nick and his family for complete healing.
And to my other beautifully broken friend! You are just beautiful! Keep fighting! YOU GOT THIS!! Always thinking and praying for you!