Sunday, November 22, 2009

The Real World

After two weekends in a row attending family cancer camps in Orlando, we are now back home and attempting to settle in to everyday life. We spent the last two weekends with other Florida families who are also battling childhood cancer. We laughed with them, cried with them, played with them, and prayed with them. We feel at home with them because we understand their world and they understand ours. However, as similar as all of our stories and lives are, they are also uniquely distinct because of the vastness of this disease and this creates an unexplainable gap that is impossible to close.

As we arrived home after the first weekend, I looked at Chris and remarked, "Well here we are, back to the real world".....and then it dawned on me....,"Or was what we just left the real world?".....then I became confused......,"Or is the real world somewhere in between?"

We almost canceled these previously scheduled trips after my father passed so suddenly but after rethinking it and realizing the kids would need it now more than ever, we moved forward with them. I was a little nervous about how refreshing spending the weekend with families who have children battling cancer at varying degrees would be, but felt that even the time away from home and the everyday routine was very needed and would bless our family.

The first weekend was particularly refreshing because we were assigned three family pals that assisted our family the entire weekend, (ie: played with the kids)! This allowed for Chris and I to get some rare small bursts of free time together and take walks and have talks that were very needed. We met a lot of nice families and engaged in a lot of fun activities as a family. However, it was never far from my mind what we were coming back to.....a house overflowing with Thanksgiving boxes that need to be checked, completed, decorated, organized, and then distributed to hospitals and families with children battling cancer before a quick turn around and another scheduled family cancer camp. I am not quite sure how these trips ended up back to back but that is how they fell and we decided to go with it.

We had already delivered 25 before we left to Gildas Cancer Club in Ft. Lauderdale. We drove down as a family and created a human chain with the volunteers there to transfer boxes from our cars to the basement in Gildas. While we were there, I noticed 5 small precious children coloring at a table with a volunteer. I asked what they were there for that night and was told they were children who had recently lost a parent to cancer. The other parent was upstairs attending a bereavement session. Now that's a whole other connotation to Children Battling Cancer now isn't it?

As expected, we came home to a house overflowing with boxes. By Monday night there were over 100 boxes in our home and I must confess there were more than a few moments I wondered what I was thinking when we started all this. But by the time we did our first home delivery on Monday, I remembered why. CJ, and CBC, was featured on CBS4 this past Friday for that first home delivery. If you missed it here is the link.......


.....it is a fantastic piece and we are very grateful to CBS4 for featuring CBC. and to little Leah and her family for allowing us to show up with the news to deliver a box. Just in case your wondering ow it came about, it all started when CJ was featured on the piece for Spirit Jump a few weeks ago. Jorge Estevez, the reporter, spotted a few of the boxes in our home and asked curiously, "What are those for?" Before we knew it we were doing a piece on CBC!

Before we could leave for the second family cancer camp, we delivered 75 boxes to the Joe DiMaggio Pediatric Oncology Unit. CJ and his friends went up and down again and again with loads of boxes. CJ made a pit stop in the lab for some quick blood counts and before you knew it he was back downstairs helping bring up boxes. We are so proud of him and his siblings and all their effort with this project. What a way to get the focus off yourself and placed squarely on others where it belongs. Thank you to all who helped deliver and distribute! We are also so extremely grateful to everyone who took the time to make a box. I wish each and every one of you could see the faces of the families and hospitals as they were delivered. Thank you, thank you, thank you for sharing in this project with us.

Please share with us how this affected your family to make the box. Many of you have already but we would love to hear from more of you. In turn, we want to share with you some of the impact your boxes have had on the families who received them:

One family that received a box told the social worker through tears that they would not have had a Thanksgiving if not for this box. They were planning to skip it this year.

Another family that received a box just lost their daughter to cancer two weeks prior. The single father is still raising two sons and said this box is a huge blessing to him. He would not even have been able to do the shopping.

This past weekend, while at the cancer camp, we overheard families share that they received a Thanksgiving Box. They did not know it was our family that organized this and that was just as well. It was just great to hear they got one and how it blessed them.

So thank you for your support and please know it made a huge impact on each family that received one. For some it was a financial impact, for others it was the reminder and comfort of knowing they are not alone and not forgotten. For many it was both!



As I said when I began this post, we are home and attempting to settle in. I must confess, I am not sure what the means or looks like anymore. The closer we got to home today on our return, the more my heart was aching painfully for my father and what this coming week in particular would mean without him. I honestly do not see a way through it and just have to depend on Him to carry me. I am feeling forced into a season of giving Thanks to God when I am more positioned before God in a state of desperation. I am unable to enter into the 'giving thanks in all circumstances' phase at this point. I am not thankful for my father's tragic death and for him being painfully ripped out of my life. I am desperately confused and more sad than I ever thought was possible.

I think this second trip helped increase that confusion. The location was beautiful. It was a property covered in towering trees dripping with moss. The weather was beautiful. The lake was serene. The food was plentiful. The activities carefully planned for families with children battling this life threatening disease called cancer. But none of that could drown out the reality that a sweet seven year old boy named Andrew, who was there with his family, was terminal. He was sent home on hospice just a week or so before this trip. This was to be their last family vacation. The weight of that and the implication it has in all our lives was thick throughout the weekend. It made the reality of what every family there was facing all the more real. It also bonded this group of 15 families in a very special way. We clung to little Andrews sweet presence. We hung on his every giggle and sound. (He can no longer speak.) His laugh was infectious and would often cause a domino effect throughout the room. His smile was radiant. We prayed with and for his family and begged God for mercy.

During a session of sharing openly, his mother who was deaf, poured her heart out before God and our group. Her husband, also hearing impaired, who was the only one who could translate, was too distraught to interpret for her. The grandmother sat helpless to interpret. The room was eerily silent as she spoke passionately in silence. You could literally hear each heart in that room shatter as she poured out her heart through her hands. I have never begged God to give someone in the room the gift of interpretation more desperately than at that moment. Sadly, nothing came. We all just sat there stunned in silence and cried for her and with her.

Then we broke for lunch.......Welcome to our world.



CJ and Andrew



We do wish all of you a Happy Thanksgiving. Take some time to be grateful for those around you. Had I known last year would be my last Thanksgiving with my dad I would have cherished it so much more and told him how thankful I was for him. This will be Andrews last Thanksgiving with his family. Hug your kids tight. Take a moment to appreciate something as simple as the sound of their voice, which sweet Andrew lost.

We are very grateful for all of you who have prayed for CJ and our family and have stuck by us these past 14 months. This year, even through our pain, we will be giving thanks for all of you!




Thursday, November 5, 2009

Spirit Jump

SEE UPDATE AT BOTTOM OF THIS POST!


CJ was interviewed today on CBS4 as a part of a piece for a program called Spirit Jump. It will air tomorrow (Friday 11/6) at the 6pm broadcast. Please tune in to see an incredible piece on an incredible organization. We are honored that they chose CJ to be a part of this interview.

Spirit Jump is a non-profit founded by Meaghan Edelstein, a terminal cancer survivor. In other words, a living miracle! And you know it when you are around her. It takes someone coming that close to death to be so full of life.

Meaghan was diagnosed with stage 3b cervical cancer in 2007 and given little chances of survival. Meaghan fought back and won! Not only because she is a survivor, but because she is a survivor using her experience to bless others and there is no greater victory than that! Meaghan credits God with her physical survival but she credits the cards and letters and kindness of others she received during her battle with helping her in the daily fight against this deadly disease.

In an effort to help others battling cancer, Meaghan founded Spirit Jump which pairs up 'Spirit Jumpers' with Cancer patients all over the world. A spirit jump is simple....it's a card, a letter, a note, a small gift or a postcard sent to someone with cancer to lift their spirits. And believe me, it works! CJ is a Spirit Jumpee. He receives Spirit Jumps in the mail from all over the country thanks to Spirit Jump. And they lift his spirits every time. And to be honest, they lift mine too!

I encourage you to check out their website at http://www.spiritjump.org/ Sign up to be a spirit Jumper. It is as simple as receiving an email now and then and deciding which person you would like to send a jump to. CJ especially loves the Spirit Jumps that come from other children so allow encourage your kids to color a picture and drop it in the mail. You get to choose who to send a jump to.

Thank you Meaghan and Brian for allowing us to be a part of this! We had a lot of fun.

Don't forget to tune in Friday November 6th at 6pm on CBS4 for the piece!
Here is the link if you missed the airing.
CBS4 Spirit Jump


CJ has chemo tomorrow morning. He is doing well adjusting to being back on the meds after two weeks off in an effort to get his counts up. We are anticipating his counts still being in a safe range to move forward with chemo tomorrow. Please pray for his spiritual peace and physical comfort as he moves forward with treatment.
Please pray for us to make the most of every opportunity and be aware of those around us continually in the hospital and at the oncology office. I never want to grow so complacent or even comfortable in this that I overlook the hurting families all around me.

Please pray for our family to have wisdom as we move forward with our own non-profit Children Battling Cancer, Inc. We pray God will grant us wisdom and discernment as we seek to serve families battling this devastating disease in a way that honors and glorifies Him above all else.

For those of you I asked to pray for 15 year old Amanda Blake; Amanda went home to be with the Lord this past Sunday. Please continue to pray for her father and two brothers as they deal with her loss.


"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves received from God."....
(In other words....'if you have received a SpiritJump, give one in return') (paraphrase mine!)
2 Cor 1:3-4

Go to the website and sign up to be a Spirit Jumper and let them know we sent you!
You will see CJ there as a Jumpee! He would love to receive a spirit jump too!
www.Spirit Jump.Org

And remember you lift my spirits when you comment here on the blog and let us know you are still with us on this amazing journey.



Update: CJ did great with the chemo Friday. His counts were still high enough to move forward. He was a little antsy about the port access and seemed more uncomfortable than usual during it but it seemed to go well overall. His nurse and I were chatting away and catching up on things so we were not sure if he was just squirming and whining because we were not paying full attention to him. So we started teasing him that he was just jealous that we were talking about things other than him. I had to laugh at myself later that I could sit and chat with the nurse while CJ was getting his port accessed and squirming around. I guess I have come a long way too!
He was happy it was what we call a "fast chemo" day. No spinal tap, no getting put to sleep, and no fasting! That was a blessing. He was a little tired after all the meds but still managed to pull off going to the Panthers Hockey game with his friends Adam and Emily. Thank you sooo much Adam and Emily for taking him to this. I can not tell you what an amazing milestone that this is in the life of a little boy who has suffered from intense anxiety and would typically walk away from opportunities like this rather than go, allowing fear to control him. This is truly no small thing that happened last night by him going with you two and we are grateful to you and very grateful to God for providing him with the strength and courage to do so! Or better said, for being his strength so he could go. I find it interesting that this progress coincided with him spending a faithful amount of time in his devotions and Bible reading lately. He has even taken up reading the Bible to his little brother Brett at night and it is so sweet to overhear.

And...as you two are about to discover as soon to be first time parents...this was no small accomplishment for mommy and daddy as well to let him go! So thank you and please know that it speaks volumes about how we feel about the two of you!

Today CJ has closing day ceremonies for his baseball season. We are so grateful he got to play that one last game last week when his counts finally rebounded. And it was the All Star game! And........he got a big hit to right field for a double. I am taking credit for this one folks! I sat on those bleachers and prayed- prayed- prayed that the Lord would let him get a bit hit after all he'd been through. I knew he wanted it so bad he could taste it and it would be the perfect end to a difficult and yet blessed season.
Guess what folks! CJ's team did not win one game all season....BUT they had more victory that any other team out there because of what it meant for CJ to step on that field and play his little heart out.


"You give me your shield of victory; you stoop down to make me great!"
(2 Sam 22:36)

Sorry I can't walk away from this post without commenting on what a beautiful picture this small little verse paints of what God has done has for us. I love the image of His "stooping down" to make us great! As a father stoops down to help his small little child when he struggles, so too our great Heavenly Father stoops down from the very throne of heaven to shield us and provide the victory we so desperately need.

In our case, it wasn't the victory in battle that the Psalmist David is referring to above but an even greater victory. He stooped down to provide us with the victory over sin and death by tasting and overcoming sin and death for us and washing us clean! Praise be to God for the victory we receive through Jesus Christ! My friends, this is the equivalent to a final world war where the ultimate battle between all the counties of the Earth takes place and the Mighty, Strong, Valiant, Deserving Victor wins the battle and then stoops down and scandalously hands the victory to the weakest, most undeserving, pitiful, destroyed nation that had no way of saving itself. Wow!

Sorry, I know that was a 'guy' analogy. I have war on the brain lately. I guess its the war that takes place on a daily basis for my heart, my mind, my obedience, my faith. But it is a battle that has already been won! God already holds and provides the victory! He will stoop down and make me great!