Saturday, September 24, 2011

'Normal Anyone'

CJ went in for his one year OFF treatment check up this week. This may sound silly to you but this was a huge milestone for us and definitely for him. You may remember the appointment when the doctor shared with us that, "The first year off treatment is the most critical for relapse." It was one of those things that you wish you didn't hear because once you do you can't seem to get it out of the back of your mind.

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....


"For I know the plans I have for you declares the Lord. Plans to prosper you and not harm you, plans to give you hope and a future."
(Jeremiah 29:11)

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

Blinded by Faith

(Nick and CJ)

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 to say there were not some very precious moments. There 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.....

"For to me, to live is Christ and to die is gain." (Phil 1:21)

And I leave my fellow blinded sojourners with this....

"We walk by faith, not by sight"
(2Cor5:7)
"Now faith is being sure of what we hope for and certain of what we do not see."
(Hebrews 11:1)


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

From Darkness into Marvelous Light

(Note: I posted two blogs back to back...please see both)

We spent the past week at the Lighthouse; a Christian retreat for families whose children have been diagnosed with some form of cancer. It was our second year attending this retreat. There were about a dozen cancer families there and even more volunteer families serving.


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?


I know, I will tell you about the one I tried to ignore all week because it hit too close to home. She was one that attended the same retreat with us last year who had just finished two years of treatment and had her port removed. I remember the sense of relief and shaky celebration the family had last year! It was finally over after such a long battle. Sound familiar? Guess why they were back this year....not to celebrate another year cancer free. You celebrate that by NOT coming back. She relapsed shortly after last years retreat and is now back on treatment. Bald again. Fighting. Can you guess why I tried to avoid dissecting that one? Can you guess what my question was for the Lord on that one? Will that be us Lord? Will we be sitting here next year on treatment again. Bald? Fighting?


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.”
(John 8:12)


"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)



"You, LORD, are my lamp; the LORD turns my darkness into light."
(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

The Aftermath of the Storm

(Please note: I am posting two blog posts back to back. Please see both.)

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

Beautifully Broken

Well, we finally have a date set for CJ's port removal. CJ will have a pre-op work up on Monday, July 11th and the Port Surgery will be the very next day Tuesday, July 12th. It will finally be official...no more port!

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.

Sometimes I feel like I live in that dichotomy. I constantly feel like I am rejoicing and mourning, broken and healing. Sometimes I begin to wonder how much one heart can take of two extremes.

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".

As we spent this very special time together the thought was never far from me that we would be coming home to prepare for CJ's port removal and they would be going home preparing for Nick's continued battle. But what was not lost on me was that we would both be going home to celebrate life and rejoice in God's blessings no matter how he chooses to grant them.

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.

"He heals the brokenhearted and binds up their wounds."
Psalm 147:3

That is what it means to be "beautifully broken". If you have never experienced this, then I humbly pray you some brokenness. It is quite beautiful when you place the broken pieces in the hands of the master potter.

And to my other beautifully broken friend! You are just beautiful! Keep fighting! YOU GOT THIS!!
Always thinking and praying for you!

Saturday, June 4, 2011

Cancer Survivors....

First a brief update....
CJ is the only child I know that could come up with his first two wishes for Make a Wish and they be something that they can't fulfill for him. That is why I did not share his wish with everyone when on his birthday when I posted about our meeting with MAW.

His first wish was going to be a hunting trip with a special guest and we found out that wishes including guns and weapons are not usually granted. Liability, permits, and all that....understandable.

His second wish was narrowed down to wanting his own room. I knew that it was not likely to be possible considering our "full house" situation. We have four kids of our own and still have my niece living with us that we are fostering through the state. Without the reality of knocking down walls and adding space....it wasn't likely. Liability, permits, and all that....understandable.

So now we are working on wish number three. We will let you know how that pans out as we continue working with Make a Wish. Hopefully CJ won't strike out three for three.

I would love to hear in the comments what your make a wish would be if you had one. It is not as easy as you think once someone is willing to grant you one, provided it qualifies. I know mine....ISRAEL!! I tried to drop hints to CJ about how awesome it would be to see Israel but he didn't take the bait. Oh well, I guess it is supposed to be his wish after all.

In addition...we are waiting on a date for port removal. Will post as soon as we know!

________________________

On another note....today is National Cancer Survivors Day....I want to share something with you that in no way is intended to belittle or take away the amazing blessing that it is to be a physical survivor of cancer.

Friday night Chris and I attended an event for the Leukemia and Lymphoma Society that supports blood cancer research. It was an incredible event and I had the privilege to share our family's story with those in attendance. I also had the privilege to spend some time talking to many of the young adult survivors who were there as well as parents of childhood survivors.

What is evident in all of them is the continued struggle the deal with both physically and emotionally. Their battle rages on however differently than it first began. For some it was a continued physical battle. For others it was expressed in an emotional turmoil coming to acceptance of all that they had gone through and the reality of their survival in light of the others they came to love that are no longer here. Still for others it was a spiritual struggle to make sense of it and not waste their survival. And all seem to uniquely deal with the fear of relapse in one way or another. I listened carefully to them all and hoped and prayed that I somehow offered some sense of comfort.

I spent some time this morning pondering CJ's physical survival of cancer in light of today being National Cancer Survivors Day. But my attention continued to be drawn to the many children who I know survive today in heaven. Children like Andrew, Sam, Tyler, Mackenzie, Sammie, Amanda Blake, Princess Amanda, Carina, Luke, Liam, Susanna, Marianna, Aiden, Anna, Ellie.....

Sadly, I could just keep typing and typing these names as their faces come from the depths of my heart, their stories flash in my mind, and their names roll off my fingertips as I type.

I thought about them today and where they stand in the broad picture of National Cancer Survivors Day and I wanted to share this perspective.....however humbly I can.
I dedicate this to all the cancer survivors in heaven celebrating their survival today!

National Cancer Survivors Day!

Definition of survive: according to Miriam Webster:
: to remain alive or in existence
: to live on
: to continue to exist or live after some trauma

A comparison....

Children that survive cancer this side of heaven:
-continue to "exist" or "live on" in the presence of their loved ones
-continue to battle the emotional effects of cancer
-continue to battle the long term physical effects from treatment
-live in fear the cancer will return
-mourn the loss of friends they lost along the way
-struggle to understanding why this happened to them
-struggle to be faithful with this gift of life God has granted them


Children that survive cancer the other side of heaven:
-continue to "exist" and "live on" in the presence of the Lord (2 Cor 5:8)
-are in perfect peace and joy (Rev 21:4)
-have glorified bodies that feel no pain (2Cor 5:1)
-live where no sickness or pain or death can ever touch them again (Rev:21:4)
-live where every tear has been wiped away and there is no mourning (Rev7:17)
-understand in full God's plan for their lives (1Cor13:12)
-are faithfully living out the gift of eternal life God has granted them (Matt 25:46) (John 10:27-29)


"Brothers and sisters, we do not want you to be uninformed about those who sleep in death, so that you do not grieve like the rest of mankind, who have no hope. For we believe that Jesus died and rose again, and so we believe that God will bring with Jesus those who have fallen asleep in him. According to the Lord’s word, we tell you that we who are still alive, who are left until the coming of the Lord, will certainly not precede those who have fallen asleep. For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. Therefore encourage one another with these words." (1Thes 4:12-20)





Wednesday, May 11, 2011

Results!

We finally got the results of the PET Scan. After a little confusion, a brief scare, and some clarification, we are confident at this point that CJ has NO NEW EVIDENCE OF DISEASE!!!!
Exhale! Thank you Lord!

However, we did have a little hesitation in sharing this before we understood exactly what the report said.

Here's why.....
I left a message for the nurse to call with the results as soon as they were available. When I got the call this afternoon, she said that the results were in and it looked "fine".
I thought that was an interesting choice of wording considering the gravity of the situation so I clarified by asking, "The scans were clear?"
She responded that the doctor said the results "were fine".

You know how sometimes you ask someone how they are and they say they are "fine" and based on the way it is said you are left trying to interpret what kind of "fine" they are. Well, that is how I felt. Fine just did not seem........ fine. I hesitated to celebrate.

I repeated this conversation to Chris and he felt uneasy with the wording as well. We wanted to see the report or talk to the doctor but we would have to wait a few days for the results to be mailed to us. So Chris did what any anxious parent would do.....he drove to the office for the results.

Once he had the scan report in hand he was even more confused and worried so he asked to speak with the doctor.

Read it for yourself and you can see the dilemma....


"Findings: There is no new focal dominant area of intense increased uptake to suggest recurrent or residual hypermetabolic tumor at this time." if it ended here it would be great...but it went on to say... "There is new triangular elevated activity in the anterior mediastinum in a pattern suggestive of thymic rebound hyperlasia." this was the line that confused us a bit
Basically, the words "new elevated activity" were a little worrisome at first. Those are not the kind of words you ever want to see on scan reports. When Chris spoke with CJ's doctor, he clarified for us that this is common after CJ's type of cancer and chemotherapy treatments. The Thymis, an organ of the Lymphastic system, becomes enlarged as it rebounds from chemotherapy. The good news is that it is highly common post treatment and very unlikely to be cancer.

I found this on a website today...

Thymic Hyperplasia

The term hyperplasia means an increase in the number of cells within an organ, which results in a larger organ. In thymic hyperplasia, the thymus gland is larger than normal. Sometimes, physicians use the term "rebound thymic hyperplasia." This describes the thymus gland of patients who have had chemotherapy for lymphoma, or a tumor of the lymphoid tissue. After chemotherapy, the thymus gland is small, because the medication makes the gland shrink in size. After a period of time, however, the gland grows. Dr. Nason writes that it usually becomes large approximately nine months after people have stopped taking chemotherapy, but the gland can grow large in just two weeks or any time from two weeks up to a year. www.livestrong.com




After talking with CJ's doctor, we felt reassured and celebrated the fact that the most important line of the clinical report stated:

"Final Impression: There is no definite scintigraphic evidence if recurrent or residual hypermatobolic tumor at this time."

In English that means.....NO EVIDENCE OF DISEASE! NED!!! NED!!! NED!!!

Praise God! We are celebrating CJ's continued recovery and remission from cancer. We are moving forward with Port Removal and will let everyone know when we have a date.

There are no words to thank you all for your prayers and support these past couple days. Your messages were very encouraging and provided a much needed boost in our spirits. We are so grateful!

I want to share with you that while we were at the hospital for the PET Scan on Tuesday we went to visit a cancer child that was in the hospital for chemo. On the way over, we ran into one of CJ's doctors. She was on her way to meet with the "several new diagnosis" that had come in over the weekend. She remarked about the ones that were diagnosed on Sunday, "Can you imagine? Happy Mother's Day...your kid has cancer."

It really hit me again that even as we get further away from this walk through the valley of the shadow of death, we cannot forget those we leave behind or those just entering it. We have to turn around, look back and shine the light of Christ back in at them so they know which direction to head.

"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." (2 Corinthians 4:6)

Tuesday, May 10, 2011

unFamiliar Routines

Today was the long anticipated off treatment PET Scan. By tomorrow we should have the results that will lead us in one direction or an extreme other one. One set of results will head us back to chemotherapy to attack the cancer again and another will lead us to port removal and one step further away from cancer treatments. As I have said before, not my will but His be done.

The PET SCAN went well overall. This is CJ's third, or maybe fourth, Pet Scan. But who's counting, right? I guess I should be, but I could not remember. Let's just say we are familiar with the routine....or at least we thought we were until today.

Typically, we arrive and are taken back to a cozy little room where they inject him with the radioactive chemicals that cause the PET images to "light up" in your body on the scans. It is a huge metal encased vile that looks somewhat ominous compared to other plastic injection tubes.
After the injection, CJ has to sit for 45 minutes to allow the chemicals to spread throughout his system. Then he is taken into a large room with the PET scan machine in it. It looks similar to an MRI machine only way bigger and more impressive looking.

He was in the bathroom (nerves) right before the injection, and the technician, whom we had never had before, was going over everything with us as she set up her medical supplies and waited on CJ. I was half listening because I already knew exactly what was going to happen and still keeping one ear out for CJ to come out of the bathroom. She went on, "After I inject him you will wait in the waiting room while he sits and allows the chemicals to take effect." At that, my ears perked up. I assumed I must have heard her wrong considering I was only half listening.

She walked out of the room and immediately my husband looked at me strangely and asked, "What did she just say?" That's when I knew I did not hear her wrong. I told him that it sounded like she said we have to leave the room and wait out in the waiting room, but she is mistaken. I have never waited in the waiting room. I always stay with CJ! I even stay with him during the actual PET Scan while he is in the machine.

I could feel the heat rising in my chest but decided to allow this to play out. CJ came out of the bathroom and I assumed my position in the chair across from him and waited. She returned and injected him with the radioactive chemical. She finished up and informed us that we could leave now and go to the waiting room. I told her nicely that we have done this a few times before and we never leave him. We always sit quietly with him. She went on to tell me how he has to be perfectly relaxed while he waits and be very still. No games. No reading. Just relaxed. All I could think of was, "Well lady, you are doing a good job at accomplishing the exact opposite," because I could tell CJ was getting nervous just at the discussion and change in familiarity.

Instead of saying that, I patiently protested that I was going to sit with him as I always have. when we get PET Scans. She went on to tell me how I cannot because it protects me being of child bearing age and I cannot be in the room with the radioactive materials. The only child I was interested in protecting was the one sitting in that chair right behind her looking at me with those huge brown eyes.

This is when as a mother you want to ask, "Do you have children, mam?" But instead what came out was, "Mam, I sit on the Family Centered Care Advisory Board and I know this hospital is committed to Family Centered Care." She stared at me silently for a moment and then said flatly, "You can sit in the hallway."

So I perched my chair right outside his door within eye and ear shot and sat for 45 minutes in the hallway. Dad went to the waiting room to pray and encourage me through texting!

CJ was a little nervous because of all of this. He said that his stomach and head hurt and I just told him to rest and he eventually just settled into the big over sized chair and closed his eyes for a while.

Eventually, she came to get him and he was taken to the PET Scan machine for scans which lasted for about 20 or 30 minutes. Once again, I perched myself right outside his door and waited. He did well.

We now enter the phase of waiting on results! Thank you again for all your prayers. We will updates as soon as we hear!






Monday, May 9, 2011

PET SCAN!!! PRAYERS NEEDED!

QUICK PRAYER REQUEST

We finally got approved for the final PET Scan. CJ will have it at 7am tomorrow! (May 10th) For anyone up doing your devotions at that time PLEASE add CJ to your prayer list that morning. I know you expect me to say pray for clear scans but I am asking everyone to pray for Gods will to be done. Nothing more...nothing less! His good and perfect will! That is all we want.

CJ is not really nervous this time. At least not yet. Tomorrow morning may be a little different. He is more nostalgic this time. More like, "Wow, this could be the last one."

Last week, we were at the hospital and ran into a close family friend that CJ has known all his young life laying in this very machine. She prayed and supported him through his battle and now she was just entering her own. She was immediately followed by his poppa Enzo. He told me he could not believe they were laying in the same machine he has been in so many times and was about to be in again.

After this PET scan, provided the results are all clear with no new evidence of disease, he will have the port removed. As much as he looked forward to this, he is realizing it will be another milestone in this journey. He told me the port has become a part of him and a part of the whole journey. It will be "good but weird"to part with it. That is a child's version of "bitter sweet" Imagine that!

It started as a race to the finish and somewhere along the way turned into him opening his eyes to what God had placed all around him, even through cancer. His advice to people just getting diagnosed used to be to hold on, trust God, you will get there! Now it seems to be, don't only focus on the finish line or you may miss some amazing people in the race with you and unexpected blessings along the route. Imagine that!

Thank you to everyone who has prayed us through. Those who have been with us from the first PET Scan until now, those that have joined us somewhere along the way, and those that have stuck with us till the end. We appreciate every prayer. Every thought.

We will meet you at the throne of Grace to pray once again for CJ!





Sunday, May 1, 2011

It has been a while. It has not been for a lack of want to but a lack of when to!

Some people say that 'no news is good news' but that is never true with me. I love to write. I hate not being able to come sit and process my thoughts and just write and share this amazing journey with all of you. I have robbed you of such wonderful experiences by not having the time to articulate them here. If I can't do that, it is because I am barely keeping my head above water not because I have become lulled by ease. I almost miss the days that we were trapped inside by low counts and chemo sickness. Yet I know I must even surrender this busy season in our lives to the Lord and trust him to show me the when to.

Regardless, I keep asking myself, how did we get so busy? And then a good friend will remind me, "You have five kids in the home, you home-school, you are finishing cancer treatments with your son, and you run a foundation." And then I always respond with, "How did all that happen?"

So tonight is my when to! I better use the time wisely!

CJ is doing really well. He had another port flush last week. He protested the morning of the appointment as usual. He does this funny laugh cry I have told you all about before. He wants to cry but can't and starts to laugh but it is a frustrated sort of laugh. I filmed him this time because I really want to show him the crazy routine we go through to get him there. The whole family was in the room as he did his little routine. Brett, his 8 year old brother, walked up and slapped him in the face and said something to the effect of "snap out of it and get ready". CJ did his wacky laugh-cry all the more. It was quite comical to be honest...the whole display of emotions and Brett coming in to put a stern end on the whole matter the way brothers do to each other. But I am not posting the video lest you think we are absolutely crazy. I certainly think we are.

CJ did well with his port flush once we were there. His blood counts looked good. He has had some fleeting back pain on and off. We shared this with the doctor but he expressed that CJ's type of cancer would not be likely to relapse in the same area as the initial diagnosis. It will be caught in the blood, lymph nodes or central nervous system, but typically not the initial tumor sight. I have come to accept that anytime that child says "my back hurts" our minds are gonna run wild and our hearts are going to skip a few beats. And then we will take a deep breath and come back to reality and think logically.

We are still waiting for the final scans to be set up. That is my goal this week. Once we have the final PET Scan and CT Scan and we receive the all clear, better known in pediatric cancer circles as "NED" or No Evidence of Disease. Then we can schedule to get his port out. We are all looking forward to that but also know it will be another huge milestone and step of faith in our lives. We are ready though. God willing, CJ will be cancer free and we will be removing his port within a month or two. Yet, not my will but thine be done Lord!

As we prepare to take another step away from this cancer journey we are watching loved ones who will never leave it process the news that no one wants to hear, and we are watching dear friends just entering this journey take those first few scary steps. Our hearts are knit to them in a unique way. And we will strive to fulfill 2Cor 1:3 "...comfort those in any trouble with the comfort we ourselves received from God."

Many of you have seen CJ on the new Joe DiMaggio commercial that airs daily. If you haven't seen it I have it on our Children Battling Cancer facebook page and it is on the Joe DiMaggio Facebook Page. He has been on several different news casts for different events and he has been doing a lot of public speaking for the Leukemia and Lymphoma Society and Joe DiMaggio Childrens Hospital. Each time he truly amazes me and the feedback he receives in incredible and often times overwhelming.

In the past couple months he spoke at the Hyatt Pier 66 for a Corporate Recruitment Breakfast, the Bankers Club in Miami for a Corporate Breakfast, the Black Velvet Lounge at the Bank Atlantic Center for a Corporate Gathering and at the Diplomat Westin Resort for a Donors Breakfast to a crowd of a few hundred community leaders, executives and Doctors.

He has no clue the significance of these places or events at his age but I stand amazed. I just can't believe that the child who used to have panic attacks on the way to PE is speaking to crowds of hundreds and sharing his story in landmark locations. I am extremely proud of him. You know why? Because he still experiences anxiety over each one. He struggles through it , surrenders it and God uses him. What is that about God uses the weak things of the world? It is amazing to watch and I get the unique privilege of watching it full circle. The people who hear him speak and give the amazing feedback would be all the more amazed if they were with us in the car ride on the way there where his stomach is rumbling, his heart is racing, we are praying and wondering why we are doing this......

....For the Glory of God. That's why!


"....Use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms. If anyone speaks, they should do so as one who speaks the very words of God. If anyone serves, they should do so with the strength God provides, so that in all things God may be praised through Jesus Christ. To him be the glory and the power for ever and ever. Amen." (1Peter4:10-12)




Tuesday, April 5, 2011

Make a Wish!

"Make a Wish! And this is the first time you can do it out loud and it will almost definitely come true!"

Those are the words the Make a Wish coordinator said to CJ when she came to meet with them this evening. Can you believe it worked out that they came tonight of all nights? It was scheduled for last week but got canceled when one of the wish coordinators got in a small car accident. So they rescheduled......for this Tuesday...tonight! CJ's 12th birthday. How cool is that?

They showed up with balloons and cupcakes for him in honor of his birthday. We sang to him for the first time today once they arrived. They sat with CJ and really helped him narrow down his wish. I won't announce here what it is yet because they still have to get it approved. But once we know for sure we will be sure to let everyone else know.

God is so kind. He orchestrates things in our lives even down to the very day. As I watched CJ work with the wish coordinator through all the different ideas, I couldn't help but begin to think it didn't really matter to me what he picked. I already got my wish! We were sitting there celebrating his 12th birthday with him. That was enough for me.

I will be honest and tell you the idea of Make a Wish used to scare me. I did not want to ever hear one of the nurses or child life specialists come in the room and mention Make a Wish because I was sure it would mean the end was in sight. I remember a mom who fell apart at the hospital when the social worker mentioned taking a Make a Wish trip. She thought her daughter was terminal by just hearing those words. I guess deep down I knew it did not mean that and I had accepted that CJ had a life threatening disease that could easily claim his life at anytime, but Make a Wish still evoked feelings in me I was not prepared for. Until now! What perfect timing.


Sunday we attended the celebration service for Mackenzie. I spoke and I was surprised, and yet not so surprised when CJ went up to the open microphone. People were sharing different things about Mackenzie or different things they would remember about her. I will share what CJ said because I truly thought it was profound.

Many people ask us how we do this. Many people avoid us because it is (in their words) "too painful". We had many people tell us they don't read this blog because it made them cry.
Listen to CJ's words spoken at Mackenzie's celebration of life service...

"When Mackenzie first passed away I was in a lot of pain. I told my dad I did not want to go through this anymore. I did not want to get close to another child only to lose them. Then my dad asked me, 'Was it worth it? Was it worth knowing Mackenzie?' And the answer is YES! It was so worth knowing her even with the pain of losing her."

So there you have it! That is why we do it. It is worth it! Yes it is painful but it is worth every ounce of pain and effort to know these amazing kids. To know these amazing families. To know these amazing people that work with them. To know these amazing volunteers that spend time helping the families or coordinating events or granting wishes. To know the amazing donors who give of themselves, their talents and their treasures for the sake of others. It's worth it.

If I could Make a Wish right now it would be that each of you would know it too.

Happy Birthday CJ.
Thank you for all the lessons you have taught me.
Thank you for reminding me it is worth it!



Saturday, April 2, 2011

The Goal

Someone asked me the other day if I had 'writers block' because I had not written on the blog in so long. I thought about it and realized it is not writers block per say but writers fear. Fear of what may come out; fear I won't have the words to accurately articulate all that is happening; fear that if I got deep down honest with things I am thinking and feeling I may unintentionally offend or confuse someone.

My last blog post mentioned Mackenzie. Many of you know 6 year old Mackenzie either personally, through her family's caring bridge page or through our foundation. As most of you know by now, Mackenzie's battle against cancer is over. She won! She is in victory with the Lord Jesus! She is cancer free!

In the very early hours of March 3rd, I stood by her side holding her little hand as she slipped from this life into the next. Her parents and her sister were on either side of her holding her and encouraging her, as they whispered in her ear reassuring her. They knew she had been hanging on for them and they were telling her it was okay to let go.

I did not understand what I had done or how I had affected this family that they would allow me the privilege to be there with them in that moment. Mackenzie had become my Goddaughter only a couple weeks before although she had captured my heart long before that. I stood there and realized intellectually what was happening....a life was ending. But to be honest, it did not feel like an ending. It felt more like a beginning. I realized this was not the end of anything other than her physical presence here in her flesh. It did not feel like a loss. It felt like a victory. She won. She was cancer free.

Notice I said, "she won" I have so often struggled with the words used when a child dies of cancer. I will often read or hear others refer to them as having "lost their battle with cancer" and it always bothers me. I guess if the only goal is physical survival, I can see those words being used. But it can't be our only, or even main goal for our children or even for our own lives. Survival is not the goal. It is a gift. A precious gift. But we have to remember that everyone will face what Mackenzie faced. EVERYONE!

Sure, she faced it sooner than some. But I have to tell you, I am not convinced she lost anything. She touched and reached more lives in six years than most will in 86 years. She put it all out there. She had cancer. She knew she was going to die from it. She always knew. Yet she protected her family and fought and went out everyday to live! I tell my kids not ro remember that Mackenzie died.....but that she lived. Truly lived! And that is how her mom would want you to remember her. That is how I remember her.

I remember her sitting at the Panthers games on my lap shortly before her final entrance into the hospital. She was coughing and it was that cough that you just know what it means. when you hear it. I knew when I heard it and I looked over at Chris and said, "the cough is not good." So I sat there with her on my lap and I knew it was a moment I would cherish forever. I wanted it to last a long time. Her just sitting there, being with me. And it will last. It will always be with me along with the other hundreds of moments, of laughs, of smiles, of hugs, of living.

CJ and the rest of the kids took it hard at first. The older two, Allie and CJ, took it the hardest. Allie was close to her and CJ was bonded to her through cancer. I kept trying to process and monitor what it was like for him. But I realized I could not filter it for him. He knows. He gets the facts about childhood cancer. He has to go through it and process it in his own personal way. Surviving comes with its own sets struggles and trials and I know CJ will work through those as well at different stages in life, especially at times like these.

He is processing it even while still living through this himself. He had his appointment shortly after that. We had his port flushed and his counts done. Everything is looking good. We are fast approaching his final scans before port removal!

Even though our main doctor said we should do this, and has ordered the scans, one doctor recently tried to tell us it wasn't necessary. We feel it is and will move forward with them. We need a clear set of scans with some time off of chemotherapy. We need to see that his body and immune system has gotten ahead of this without the help of daily chemotherapy meds to maintain his remission. We need that before we take the port out. We feel after two years of this we should have that right. We just pray AvMed will see it that way. I have bit my tongue continuously about that topic for two years and now is not the time to go there....lets just say there may come a time we need to not only pray for doctors and nurses and patients but for the office clerks sitting behind a desk making a yeah or nay decision that change someones life forever.

In addition, we were recently informed about a Survivorship program through the University of Miami that CJ may become a part of. I am smiling as I type that because my spell checker does not recognize the word 'Survivorship'. That is exactly what the program is about! A new breed of people we have never had before. In the past, a childhood cancer survivor was extremely rare and people just basically chalked them up to be miracles. And considering what they went through they really really are. We are extremely blessed to know several of them.

Today however, we have lots of children like CJ who are cancer survivors. They are going to become adults and live among us. We don't know what that looks like or what challenges they will face. We don't know what the long term affects with be on them or their future families., their children. The program will follow them and monitor them. It is my understanding they will be followed by a team of doctors including cardiology, endocrinology, neurology, psychology, etc. So we are very interested in this and looking forward to being a part of such an important program.

Even if the cancer never returns for another showdown, CJ will now face the effects of the medications and treatments he endured to survive. I remember sharing with you how we listened to a seminar during CJ's chemotherapy called, "The Consequences of Survival" that dealt with the late effects of childhood cancer treatments. Although, it seemed like such an odd statement at the time, we are finding ourselves entering that realm of cancer now.

We are thankful every day that CJ is still with us and that he is considered a 'cancer survivor" However, I will be perfectly honest with you and tell you......our goal is still heaven. Surviving is a temporary blessing. Eternity with the Lord is the goal. This just means we have more time to prepare!


"For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. Meanwhile we groan, longing to be clothed instead with our heavenly dwelling.... Now the one who has fashioned us for this very purpose is God, who has given us the Spirit as a deposit, guaranteeing what is to come.

Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. For we live by faith, not by sight. We are confident, I say, and would prefer to be away from the body and at home with the Lord. So we make it our goal to please him, whether we are at home in the body or away from it. For we must all appear before the judgment seat of Christ, so that each of us may receive what is due us for the things done while in the body, whether good or bad"(2 Cor 5:1-10)

Tomorrow we will celebrate the life of Mackenzie Grace Gonzalez.

Calvary Chapel Boynton Beach
Sunday April 3rd, 2pm
Open to the public to celebrate with us.
Do not wear black!


Monday, February 21, 2011

Critical Time

Another month has come and gone. CJ had another port flush and blood counts this past week. His counts are continually on the rise. Although we are thankful for his continued recovery, it is still a little strange to see his numbers begin to fall in the "normal" ranges for the first time in over two years. So far his side effects of coming off chemo after two years on so many medications have been mild and nothing out of the ordinary. Praise God!

Of the five oncologists that we rotate through, we saw his more 'serious' doctor on this visit. He was examining CJ thoroughly for any late effects as well as for signs of recurrence of cancer. While doing so, he began explaining directly to CJ how important it is and why he must check 'down there' every time CJ comes in. He explained to CJ how the cancer will often try to come back and this is a common relapse place for the cancer. I sat there listening and thought, 'what must it be like for CJ, a young boy, to have to think or worry about that?' But I guess the things CJ thinks and worries about already have no comparison to a typical 11 year old boy.

After examining CJ, he turned and remarked in his serious tone, "The first year is the most critical! Every year after that the relapse rate decreases."

I find it amazing how mere words can create such a strong emotional and physical reaction. It was just words he spoke. But it was the truth in the words that stung. I know there is the chance that CJ can relapse. I know it is most critical in the first year. It was not news to me so I wasn't sure why it affected me.

For the next several days, the words "the first year is the most critical" hung with me. They kept replaying in my head. They seemed to be mocking me and coming to me at strange times. I caught myself calculating the months in my head and wondering would that date magically change things once it had come and gone or would the months and years just tick by with one blending into the other before we knew it.

These were not lies playing in my head so it wasn't like I needed to counter the lies with truth. Still, I knew I had to replace them with a stronger truth. So I chose the verse in Matthew 6:27 that says, "Who of you, by worrying, can add a single hour to his life?" God's words not only counter the lies of this world, but His truths are also greater than any truths the world has to offer as well!

It has been difficult to cling to those truths as we are constantly faced with areas that tempt us to worry or despair.

Our sweet friend Mackenzie Gonzalez is in critical condition in the Pediatric ICU at Miami Childrens Hospital. Many of you know how special this little girl is to our family. She went in 23 days ago for a surgery that was supposed to be a two day turn around. We were all planning to go to cancer camp together that weekend. She never made it to camp. She was having trouble breathing and was intubated. She been in a medically induced paralytic coma ever since. It has greatly effected CJ and our family. We are heartbroken for the entire family.

During this time, I have had the privilege of becoming Mackenzie's Godmother. We had a small ceremony in her hospital room over her bed. She is in a coma but can hear us. It is an honor I do not deserve and yet it a privilege and honor I will cherish for the rest of my life and I am so humbled they would ask me. Alibrandi, my oldest daughter, was there with us but CJ could not bring himself to go. He did not want to see Kenzie like that. He watches every video I post and looks at every picture I take of her and always asks about her but says he cannot see her that way and I respect that.


As I sat with Kenzie in the ICU this past week and I thought about all the critically ill children surrounding her, I could help but think of the doctors words to me at CJ's appointment about this being a 'critical' time. I suddenly realized it is not critical to God. He is not caught off guard by these tragedies. He is not on a timetable to bring healing and He is not hanging in there to see how it all turns out because....

"...all the days ordained for me (CJ) were written in your book
before
one of them came to be."
(Psalm 139:16)




I find it amazing how God will give me the opportunity (or should I say force me) to practice what I preach almost immediately. After typing this CJ called me into his room to tell me he was aching all over. He has a fever, chills, and is lightheaded. He seemed very concerned about the possibility of his port being infected because he was in the lake earlier in the day as he helped his father clean the yard. He has heard enough to know that an infected port is very serious and can even kill you if left untreated. We told him that we really doubted his port could be infected that quickly. He did have a fever and if it got any higher I knew I would have to take him to the emergency room as per his protocol. Thankfully that never happened. he made it through the night although he said he woke up fighting the chills a few times.

We have since spoken to his doctors and considering the fact that his brother Brett and I have both been sick recently we feel confident that this is nothing serious and can be treated accordingly while watching him closely. But isn't it kind of God to allow me to put my words to action and combine them with faith!


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Many of you have asked about CJ's poppa Enzo. He is still fighting! It has been gut wrenching and very difficult to watch a man like that suffer like this. It is hard to watch anyone suffer but you cannot possibly understand if you don't know Enzo Alibrandi. There has always been a dignity about him and this disease has a way of stripping you to the core. He is on palliative care at this point. His cancer has spread and is causing extreme pain. and yet I have never seen someone more determined to live no matter what he faces. He gets up every day and fights, determined to keep on living. My mom is his greatest advocate. The both have completely amazed me. I could not be more proud of either one of them and yet my heart is breaking daily for them. Thank you for your thoughts and prayers for CJ's poppa Enzo.

If you have not heard the new song by Rascal Flats, "I won't let go" I would encourage you to try to listen to it. It is a beautiful representation of what my mom has done so faithfully for her husband. She dedicated it to him and played it for him while sitting next to him reading him the words and stressing that she will 'fight his fight' and she 'won't let go' as he cried absorbing what the song said. And it is exactly what Mackenzie's parents have done time and time again as everyone tells them to give up and let go. Yet they fight for her and they won't let go.
When I hear it, I hear God singing over me and pray that you sense it too because He won't let you go.....

"Never will I leave you, never will I forsake you."
(Deut 31:6)


To follow Mackenzie's story visit her caring bridge site at this link and/or follow CBC on facebook at www.facebook.com/childrenbattlingcancer. Please continue to pray for her family, her parents and her siblings. The battle is the Lords and yet we are weary soldiers.