Sunday, August 1, 2010

Who Does That?

We just got back from a week at the Lighthouse Family Retreat for families of childhood cancer in Gulf Trace Florida. I am still at a loss for words for all we experienced there so I am going to borrow the words of one of the other cancer parents we lived with while we were there..."Who Does That?" Does what? you ask....Let me explain.

This cancer retreat affords families in the midst of childhood cancer the opportunity to get away from their home, away from their clinic appointments, and spend time reconnecting as a family and bonding with other families of childhood cancer. Sounds simple right? Not this retreat! This was profound!

We showed up to a row of houses on the beach in the Gulf of Mexico that the families would be staying in. We were told we would be sharing a house with two other families also battling childhood cancer. One of those families was the family of 10 year old Truman Hedrick who we had recently met when he came to Miami to fulfill his wish to interact with an Orca Whale. Like you all who have followed CJ on this blog, I have followed Truman since his diagnosis of Osteosarcoma in June of 2009. I have followed the amputation of his right leg and the trauma that has inflicted on the entire family. I have prayed and cried and reached out to the family through their website. Like many of you feel about us, I feel like I know them personally.

Earlier this year I got a chance to meet them personally, when I found out he wanted to meet an orca and his wish was denied by a well known wish organization, I thought I would see what we could do through our organization and our amazing friends at Miami Seaquarium said absolutely! Before we knew it, it was all set up and his family came to Miami from Tulsa Oklahoma. We got to meet them that day in June at Miami Seaquarium and it was amazing.

When I heard their family would be on this retreat I was VERY tempted to request that our families be housed together. Instead, I prayed about it and trusted God who knows the desires of my heart and waited to see who He housed us with.....and we got Truman and his family! Isn't God so kind! We also got another amazing family from Georgia who has a 16 year old daughter named Morgan who has been battling Leukemia pretty severely for the past year. She is absolutely beautiful and both her and Truman were such an inspiration to our family. Our three families literally lived in the same house for a week. We had our four kids, Truman and his brother Greyson, and then Morgan with her sister April. So between the three families we ended up with three teenage girls and 5 boys.

Now, to the even more amazing part. We arrived to find a family partner waiting for us. This was another family who had come to the Lighthouse on a missions trip to serve our family. Each cancer family has a family partnered with him. We were perfectly matched with a family from Georgia with three sons. We quickly discovered that they would be serving our family all week. We also soon discovered they had already known about CJ, were reading his blog and praying for our family long before we ever met them that day.

This family spent their week making sure we had anything and everything we needed. They helped serve our meals, washed our laundry, encouraged us, prayed for us and with us, watched our kids so that Chris and I could go on a date night with the other parents. My family partner Kim, and all the other women serving the families, set up a spa day and washed our hands and feet. All I could think of was Christ washing his disciples feet and then saying, "I have set an example that you should do as I have done for you." They watched our kids each day so that we could attend the "common grounds" sessions with the other parents. This was a special and deeply emotional time of sharing our hearts, hurts, and hopes with the other parents. And this is where the phrase "Who Does That?" came from.

One day some of the families were sharing about some of the amazing things other people, often strangers, had done for them during their families battle with childhood cancer. From fund raising, to serving, to amazing gestures of generosity and kindness. Truman's dad was saying that just as he was blown away at the suffering he has watched his son go through this past year, he was also blown away at the blessings he has seen poured out on his family. Like us, he was blown away at the families there serving us all week. During our sessions, he coined the phrase..."Who Does That?" when describing these blessings poured out through people. Who gives up their week to pay to come on a missions trip to serve our families? Who finds out about a little boy with cancer and makes a trip to the hospital to pray with the family and deliver a gift for the child he does not even know? Who shows up and surrounds a house with a chain of people holding hands and praying for the sick child inside? Who finds out about a little boy getting an amputation and offers to fly him to his appointments? Who delivers coolers and coolers of snow to the front yard of a house of a little boy dying of cancer so that he will have one more chance to see snow before he dies? Who prints up a flyer and walks around the neighborhood to be sure that all the neighbors know about and pray for the child on the block battling cancer and collects money to help the family? On and on.

I wish I could share all the stories with you. I wish you could sit in on the "common grounds" time and hear the struggles these families face continually. Like me, they have found that just because your child's hair comes back, the battle is not over. Some of these kids may not "look the part" of childhood cancer anymore but they are every ounce as much battling the disease and its effects. We are all facing the reality of relapse rates that scare us to death. Don't think for a minute I don't know what the internet says about Stage 3 Lymphoma. Don't think for a minute that does not scare the hell out of Chris and I. We must choose to trust God everyday over statistics.

Oddly enough, some of the families that were really struggling the most weren't the ones just diagnosed or still on treatment but those that had just ended treatment. A whole new and different kind of struggle takes place. That was a shock to see and a reality of what we have coming in September as CJ nears the end of treatment.

CJ and his siblings, Alibrandi, Brett and Corey did amazingly well this week. I sometimes think they are also more comfortable around the families of childhood cancer. They are understood in a different way and the bond is instant. I was blown away at the caliber of the faith of the kids. at this retreat. I am so proud of my daughter Alibrandi and her care for the kids there and her openness about her faith and values. I can never say it enough, that girl blows me away! I want to be just like her when I grow up. I don't know where she came from or how I got so lucky to have her as my daughter. There must have been a mix up at the hospital is all I can say but please don't ever tell her.

Before I end this, I have to share a picture of one particular night with you. We were back at our house hanging out. Truman was taking his leg off after a long day on his prosthetic, Morgan had been throwing up that day and wasn't feeling well, CJ was taking his chemo, and Mackenzie was in our house running around swollen and bald as a bat. Us moms were chatting and I looked around and realized that if anyone else walked in this house they would probably lose it at the site of Truman, CJ, Morgan and Mackenzie and yet here we were with these four kids and all their siblings and it was completely 'normal' to us. And even, if you will allow, comfortable for all of us. We belonged together. We were bound first and foremost by our shared love of our Lord and our bond in Him and then by this strange unwanted bond of childhood cancer..... the club no one really wants to be a part of yet can't seem to leave behind.

So are you ready for the answer to the question, "Who Does That?" During common grounds another father whose son is battling cancer reminded us of the Scripture that says "By this, all men will know that you are my disciples, if you love one another." (John 13:35) So who does that? God's people do, that's who! Are you someone who does that? I know I want to be. So my new question instead of Who Does That? from now on will be....Do I do that?

God taught us many powerful lessons this week. It will take some time to process all we heard, saw and experienced. It was very difficult for our family to leave. I may continue to share some of it with you as time goes by.

I would strongly encourage you to read Truman's Caring Bridge page at this link! It is a very powerful story of a boy who has had to sacrifice his leg in his battle to beat this awful type of cancer.

Prayer Requests:

CJ will speak in the morning at a corporate event at the Bank Atlantic Center for Light the Night. Please pray for God to use him powerfully. And then we will run over to the hospital for blood counts. I am fully expecting his counts to be wiped out because that seems to happen every time we come back from a major trip and lots of exposure but I am still praying for good counts so he can keep moving on with his chemo and get to the end in September. We are almost there! Pray for our family as we prepare face that hurdle. Do not think for one minute any family gets to this point and takes it lightly. It is an indescribably mixed emotion full of confusion.

Add Image
CJ taking off Truman's leg after a long day.

Add ImageOur family partners with CJ
The McDonald Family

Beautiful Morgan who lived with us for a week


Anonymous said...

Praying always, trustng God with you.

Anonymous said...

As always, we loved to read your journal...and as always, it makes us want to try a little harder and be a little better. What an amazing week. We are SO HAPPY that we got to share it with you guys! My kids can't stop talking about Corey and how they all wish he was their little brother because he is sooooo cute! Thanks for the crabbing expedition. It was a night to remember! Hope we see you guys soon!

Sue, Yovany, Alicia, Anthony, Kenzie & Chris

Anonymous said...

What an amazing experience and blessing! I am so thankful and happy you guys had a "beyond your wildest expctations" trip. I know your plate is really full right now. I am here to help.



Anonymous said...

Hi Dawn,

It is truly amazing how God has continued to bless you and your family. Thank you again for sharing your journey. It is so wonderful to witness how you and your family have chosen to grow spiritually from such challenging situations-even cancer. I'm confident God always desires the best for us, however, at times this may not seem so clear. May your heart continue to seek His path.

Anonymous said...

George Family.

Thanks so much for sharing your experiences and stories with us. Thank you for letting us into your world, into your greatest joys and into your greatest fears, so that we can be on our knees praying for you constantly! We know that the path you are on is not easy, but these types of stories, blog entrees, and small pictures into your world help us to relate so much better and to carry you in our hearts so much deeper.

I love you guys so much! You will always be family to me and your struggles will always be felt in my heart so much deeper than you could imagine.

~Melinda Bush

beckyg said...

Praying without ceasing on your behalf...thank you for transparently sharing your lives with us, you have impacted me (and our whole family) in more ways than you will ever know. Thanks for letting us be a part of your lives, for allowing us the priviledge of carrying this burden right along side you. We love you, and you are in our thoughts and prayers OFTEN!

:) Becky
for the Gonzalez Gang

Anonymous said...

Hi Dawn, it's Diane again from Broward Health. You did it to me again. I just read your recent blog post and have tears running down my face! What an amazing entry, and what a great week you all must of had. I follow all your posts on Facebook too and even though I don't know these kids, I get so sad when I hear about them. Like Tyler, I went to his caring bridge page one day and saw the tumor on his back and literally almost collapsed. I can't believe what these kids go through, and of course their families. You all are on such a greater plane of spirituality then the rest of us, and I know when I get to heaven I will understand what the purpose of it all was, and some days I say to myself, it better be a darn good one!

Anonymous said...

George family, you are always in our prayers. Thank you for sharing your sorrows and your joys with us. You are all so very special to us!
the Sedanos

Debbie Warnock said...

I'm so glad you all got to have such a great experience with wonderful friends at the beach...the most peaceful place in the world! God is amazing and extravagant. You're all still in our thoughts and prayers...and trust God to continue to bless you with his healing love.

Unknown said...

Thanks for the beautiful update. We love you guys! Gavilans

Anonymous said...

Can I just tell you AGAIN how wonderful and amazing you guys are? THANK YOU for sending out an email on our behalf (bunch of losers we are that can't ever quite pull it together through this treatment endurance test). Kenzie has scans tomorrow afternoon and we are going to Gilda's Back to School bash afterwards. We hope we will see you guys there. You are incredible Dawn! Read Truman's great news today. You guys are always in our thoughts and prayers! We are going to ask the school to do a hat day for CBC as soon as school starts. We owe a zillion people for all the help we've gotten and really want to start paying it back. We know firsthand that CBC will do something really good with it! Hope you guys are doing well!

Sue, Yovany, Alicia, Anthony, Kenzie & Chris