Tuesday, September 8, 2009

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


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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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






CJ and Sam





Brett and Peter




CJ and Joseph







CJ, Allie, Brett and Corey with Mickey and Minnie

See what I mean....surreal.

9 comments:

Martha Rivero said...

Dawn,

I was in Disney this past weekend as well, Magic Kingdom as well, it is for sure a small world. I am crying at the moment, because my weekend was awesome, because my daughter loved it, it is the second time I take her, but now at 4 year old, she is more conscious of how amazing Disney World is, I will send you pictures to your email, so you can see how small is the world. I was very happy to see her laughing and playing, even the long lines to take pictures with the characters weren’t long enough for her. I am tempted to say “what a coincidence”!!! But, I have learned with you that there is not coincidence at all. The pictures you posted of the children are breath taken, it is a world of pain, and when I think about it my sister, and my dad comes to my mind, when I think about it I put myself in your place, when I think about it I even admired more the families that are going through this kind of trial with their precious kids, when I look into my daughter’s eyes I see transparency, love, the good kind of love, and I pray for God to care of her, and in my selfishness I ask God everyday to keep her from harm, to keep her healthy no matter what.

*There is not one day that passes by that I don’t think and pray for CJ and the other kids, I feel there is not much that I can do, but I pray that God uses me somehow in helping just a little to ease their pain. It is very weird because is the pain I know very well because of my close relatives that are and have gone through it, but it is for certain unknown because I cannot imagine what parents feel or go through each day to combat this disease and save their kids. I pray that Jesus Christ our Lord help us to have the compassion, to luck our arms in prayers for these families, and we can just do a little each one of us to help.

Your sister in Christ,

Martha Rivero

Anonymous said...

My friend, thank you so much for sharing. I am always so encouraged after I read this blog, and am thankful for how the Lord has used your posts to encourage, and convict me at times...We serve an awesome God. So thankful for the priviledge of serving Him alongside sisters like you! May the Lord continue to shine His face upon you, and give all of you the grace and strength for just one more day!

Becky
for the Gonzalez Gang

Anonymous said...

Dawn and Chris,
That same gift of compassion that CJ has of reaching out to others in need is what we saw when he was so little - why we called him our little 'pastor' - and why, even now, at such a young age, God is using him in a mighty way to make an eternal difference in the lives of those he influences. CJ has lived more of God's will for him in his short 10 years than many of us can say for a lifetime! Way to go CJ - surrendered and real even in a surreal world! And the same can be said of your whole family! I pray God richly blesses and uses your new ministry for those who need it so badly! I love you! Aunt Karen

Enzo said...

Cancer Camp - the words don't seem to go together. Today is 9/11 and it is a sad day for the country. Tomorrow is 9/12 and it is a very sad day for our family. CJ made his trip in the ambulance to the hospital last year on 9/12 immediately following his MRI and that is when Dawn and Chris first heard the word Cancer in the same sentence as CJ. I remember that week while CJ was in the hospital having a battery of tests and Dawn and Chris were in the little room with the doctor's assistant with their workbook of what was to come and what their lives would be like in the upcoming year. They both looked like very scared deers caught in the headlights. I remember that weekend the doctor actually said there is a cancer camp in a week or so in Disney World for families and maybe you can go. Out of the question at that time as the Georges still had to grasp everything they were in for including the possibility they could lose their boy. I remember hearing multiple tumors, stage III, within a few days. That is why I am so amazed that some of the families you met were newly diagnosed. It must have been helpful for them though to meet all of you that were a year into it for guidance.

It is really sad for me to think about some of the individual stories of the kids you met this weekend. Really hard. I was happy the day you were in Disney and I wanted so much for all the kids to have fun but like you I know they have their feet in both worlds too. Even though they are smiling and having fun not one of them except for sweet Corey forgot where they were the day before.

I pray that you will go back next year and that CJ will not be in remission, he will be cured. I pray that you will want to go and be a testimony and an encouragement to other kids and families. Maybe your Children Battling Cancer foundation will be in the black and you'll be able to do something special for some of the kids while you are there.

Please God help CJ today during his chemmo, spinal and hospital stay today. So many places in one week. Please help him not to have the itching reaction. Please help his limp, his badge of courage I think of it as to improve.

Please please God help his Mom, Dawn. I see her and I feel sad. Her plate is so full. So full that I don't know how she manages. Homeschooling for 4. Homeschooling to the point that the kids are about 3 to 4 grades ahead in state testing. 18 meals a day, 8 loads of laundry a week, trying to get a foundation off the ground and meet sponsors and churches and people planning events, trying to keep up with the blog, oh yeah, going to Joe DiMaggio with CJ every week, monitoring his medicine and every new nuance, nurturing the other children, squeezing in baseball and practices, etc. etc. I'm telling all of you this girl doesn't have 5 minutes in a day that are frivilous and I'm as worried about her as CJ so please include her in your prayers for me.

Thank you.

Grandma Paula

Break the Mold said...

You can all tell my mother wrote that! My mommy still worries about me like I worry about CJ. And she can always tell immediately by my voice or face when I am struggling.
Thank you mommy for looking out for me too! :)
Well, we are late for the hospital. I just came on here to get some encouragement before I go because that is what the comments do for me.
Pray for CJ. He (and the whole house) is very sick, I don't know if they will cancel his chemo or not but i have to take him anyway.
Dawn

Janet said...

Dawn, reading your entry took me back to a time when I went to Animal Kingdom alone with my 3 youngest who were 4, 3 and 3 when we went. It was my best visit ever to Orlando. You'd think not with 3 little ones and alone because my husband couldn't get away from work. But I had been living in a world of special needs, therapies, doctors, diagnoses. I remember a sweet old gentleman who worked there saw me waiting to get in to see the Lion King show and got us seats right up front. The show was so colorful and so enchanting, my tears just started releasing thinking of how good God is that he had gifted us with this special weekend. You see, someone had offered us this free Timeshare to use. I cannot put into words how that show in particular and how the whole weekend blessed me! No, how God blessed me with joy I had not felt in a long time.
Children Battling Cancer, the chemo bags that are used to bring healing from cancer, will also be used to bring a little bit of emotional healing to children with cancer and their families who truly need some relief or a little escape. I was thinking, you may not be able to bless people with an Orlando weekend....but, hey, why not. God is able!! I pray God, will use these bags to bless MANY!!
janet s.

Harold said...

Dawn,

I read your post and can not help but have a heavy, saddened heart. It seems so unfair to me that those children along with CJ, and their families have to suffer. I pray that CJ makes a full recovery soon, never having to go through Chemo again! Along with all the other boys and girls, I pray for a miracles healing that touches all of them.

I have mentioned before, I really don't know how you do it all either. I only have the two and a very helpful husband, as you know and I still struggle to even check my email..

Please let me know if there is anything I can do as you sister and friend to lighten your load. Remember, Kevin is at school until 2:45pm, so anything I can do before then that would help you in the slightest, I would be honored to do. Maybe, I can bring Kyle over to play with his cousin one day next week and visit! I'll call you this weekend.

I love you tons and will pray for you and the family.

Jacks

Anonymous said...

Esther 4:14 And who knows, but that you have come to royal position for such a time as this.>>>>>>>> Before C.J. was diagnosed your life and the family were busy following what you felt the Lord was calling you to do, when he picked you up and turned you all in a different direction. Before you knew it life as you knew was no more. God set you on this road knowing perfectly well that you WOULD be given all you would need to go through this journey with him, and that you aren't alone in any of this.The Lord has surely chosen YOU Dawn because he knows you better than yourself, he knows your longing for serving him, your unending love for him and your faithfulness to him. I love the saying " God doesn't call the qualified, he qualifies the called." Only he knows what your calling will be on this road you will travel with him, but in the end it will certainly bring glory to the Father. We all must be vigilant in our prayers for C.J. and your family, but also for all families who have children suffering with cancer, it is devastating disease for any family to deal with. God bless you Dawn and all of your family, my prayers are laid at the Fathers throne on behalf of your family. Psalm 138:8 The Lord will fulfill his purpose for me; your love Oh Lord endures forever, do not abandon the works of your hands.>>>>>>>>> His will be done!

Sonia said...

Dear Dawn and Paula, you made me cry. It has been a long year full of experiences, insights, suffering, successes and happiness too. We still very interested in all that happens to CJ and all of you. I’m happy to see CJ looking so good in the pictures with his beautiful hair growing and showing his beautiful smile too. You are always in our prayers. God bless you.
Love,
Sonia,Antonio Andrea y Alejandra