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)


Ily Figueroa (Heartsyearbook) said...

Once again I am in awhhhh as I read your post. Cj has come a loooong way but so have we by reading what you post. Once again thank you very much for sharing and by sharing you make me put life into perspective... And thanks for showing us how to let go and let GOD!!!!! Tell Cj we say HI and send him lots of HUGS and KISSES!!!!!!!

Anonymous said...

CJ, you are our hero!! And Dawn, pleaazzzeee post the video of CJ and Brett - or send it - would love to see it!! Love and miss you all! aunt Karen

Jenna said...

My name is Jenna and I came across your site and u are an amazing brave courageous fighter.
I was born with a rare life threatening disease.