Sunday, August 29, 2010

Best Laid Plans

With all the excitement of the new year school beginning, we are also anticipating a very special ending. In the same month CJ starts his first year of middle school (6th grade), he will end two years of chemotherapy. The other day I was writing a short bio of CJ's story for a website that will be publishing it. As I wrote that he was diagnosed at age 9, I had to pause and think about that...... he was diagnosed with cancer at age 9! He is now 11! Two years have gone by. He was only 9!

I remember the moment when the doctor specifically said the words "two years of chemotherapy". This was actually told to us on one of CJ's absolute worst days about a week into his initial diagnosis. When I think about it, I can still feel my chest tighten and breath shorten the way I did that day. It was like being punched in the gut with a knife that managed to scoop a piece of your heart out as it was yanked out. I remember that day feeling overwhelmed and expressing to Chris, "How we will do this for two years?"

Looking back, I now know the answer to that question now. By God's grace! September 12th will be two years to the day that CJ was diagnosed. That following week he will go in for what promises to be his last chemotherapy appointment. He will then be scanned and we will hear the word every cancer parent longs to hear. NED! No Evidence of Disease! The all clear! We will begin the journey of walking away from chemotherapy and trusting that his scans will continue to be clear for the years to come.

Sounds positive and full of faith right?......Not!

The truth is.... that is what we are believing, hoping and praying for, yes. But what we really feel is fear and trepidation. As I was preparing for school to begin for my kids (keep in mind I homeschool), I was getting all the books ordered, preparing the lessons plans, organizing a schedule that will best suit our family at this time, and just planning for a successful school year for our family, when I noticed a feeling of being unsettled and feeling like no matter how prepared I was I could not plan our future. This week, I believe I was reminded of why.

Two years ago, I began our homeschool year very excited. We were off to a great start. I even remember the feeling of "finally having it all together." I felt like we were on the right track and everyone was doing so well. Our schedules were laid out. Everyone was working on target. Then tragedy struck. One month into the school year, we were excited about our first PE class that afternoon. But first, CJ had to have an MRI in the morning. You know the rest..... we never made to PE and we never made it home for three weeks. He was diagnosed with cancer that weekend and my great schedules and plans were out the window. All the preparation and all the great feelings of having it together instantly vanished.

In time, we adjusted. We made it through the year. God taught us to depend on Him and not our plans. His plans actually turned out to be better than mine. Hard to believe I can say that right? But I know they did. Mine were written on paper. His are carved in eternity!

Then one year ago, I was at the same precipice. The school year was beginning. We had a year of chemotherapy behind us. CJ was getting stronger, and I was ready to jump back in and kick our homeschool in gear again. We even decided to embark on a whole new journey by signing up for a new rigorous homeschool program. I felt good. This would be a good year. One month into that school year tragedy struck. My father was found dead at his own hand. It was beyond devastating. All my wonderful plans meant nothing anymore. My desire to jump back in...gone. I was once again at the mercy of God! I wish I could say I have come to the point in this tragedy that His plans turned out better than mine. Although I choose to believe it is true in light of eternity, I honestly can't see it or feel it yet. The pain is horrific. The consequences are still avalanching in on us.

So here we are again....We start a new school year tomorrow. I feel good about it. I have all my schedules laid out. My curriculum is planned. We will walk our son through the final stages of chemotherapy in a few short weeks and hear the all clear from his doctors. Allie will have a great first year of highschool and CJ will have a great first year of middle school. It will be a great year, right? I know better. It will be what God determines it to be. And I will trust Him. But I don't take it for granted that there won't be tragedy anymore. The only thing I know for sure is I will glorify His name from the highest mountaintops and from the lowest valleys.

CJ walked in our room last night and told Chris and I that his spine hurt. That is the first time he has ever said that since this began. Mind you, his main tumors were wrapped around his lower spine and tail bone. I think for a moment we both just froze and our hearts skipped a beat. I flashed back over the last two school years and how they began and thought for a minute, not again. After talking with CJ and seeing where he was sore, we determined it was from throwing a baseball around to get ready for the baseball season. We breathed a sigh of relief. I wonder how long we will freeze like that when he is hurting or sick. I have met parents who say....forever. You will always worry and wonder, and then you just trust God.

So, here we go. We are diving in to the new school year tomorrow believing there to be water in the pool. We can't see the bottom, but we know how to swim very well now. And we know all of you are standing on the edge of the pool with life rafts in your hand ready and waiting as you have been for the last two years to throw us a line if we need it. Thank you!

"In his heart a man plans his course, but the LORD determines his steps."
(Proverbs 16:9)

Please pray for CJ as we move forward and trust God for how this will all end. As I mentioned before, he wearies a lot easier these days. We are believing that to be the wear and tear of two years of chemotherapy medications and blood counts all over the place. Continue to lift him up!
Please pray for the parents who never make it to this stage. They are heavily on our hearts and mind as we enter September. Please remember that September is National Childhood Cancer Awareness Month. Oddly, CJ was diagnosed during this awareness month that I knew nothing about! Not anymore! We are determined to be sure everyone knows what this month is. We are determined to get the gold ribbon which represents childhood cancer as saturated as the pink ribbon is. It will take years but we will do it.

Please support our families 501(c)3 non profit dedicated to raising awareness and support for childhood cancer.... Children Battling Cancer, Inc. (CBC) Consider making a donation during the month of September in honor of a child battling cancer. All the proceeds we raise go directly to supporting these children. You can go to our website at to donate and learn more. Please consider hosting our chemo bag awareness fundraiser at your church, school, clubs, work, neighborhood. It is easy and we provide everything you need. We need to raise awareness and support and we can't do it alone!!! Check it out on the website!

Thursday, August 19, 2010

Happy Endings

CJ did well with his chemo and spinal tap last Friday. He was not feeling well at all and I did not think he would be able to get his chemo but his counts came back okay and the doctors said we could stay on course. We took lots of pictures and I even video taped the spinal tap for him to see what he has been through. This turned out to be what we believe is is LAST spinal tap. We have a couple more chemo appointments to go and of course we still take chemo daily at home but the last spinal is a big deal. After the spinal, Lotsy Dotsy (pictured here with him) and the nurses sang to him and brought him a little cake and some gifts. It was very sweet.

He just watched the video of the spinal tap with me and was pretty surprised when he saw the spinal fluid dripping out of the needle protruding out of his back and the doctor inject the chemotherapy directly into his spine. It is one thing to know what was done and hear about it and quite another to see it. He is thinking about letting me post the video but you can see some of his adorable tush in it, so he is not sure if that would be appropriate in case there are some younger blog readers. If we post it I will put up a warning first!

He had a rough but okay week bouncing back from chemo. He still is not feeling 100% from the chronic cough and persistent cold he has had. I guess he will never be 100% until he is off all of this medicine and his blood levels have time to get back to normal levels. I was told recently by a mom that it took her son 6 months of being off chemo before his counts were all normal again. I had not even thought of that but it makes perfect sense.

Here, in the George home we vary to all extremes emotionally. Some of us are excited about the end of treatment and some of us are nervous about the end of treatment. Our nurse (who also had a child battle cancer) was telling me how strange it will feel to go from giving him multiple pills each day and every night to suddenly the very next night....not! I think it will be a relief to not have to think about all the pills and charts and times and doses and refills and co-pays, etc. yet they all make you fill like you are doing something to beat this awful disease.

CJ's dad, Chris, does not like to talk about the end of treatment in any celebratory way since we are not there yet. We want to plan an end of treatment party for CJ but Chris just wants to be sure we get there first. He knew a fellow police officer whose child was on their very last day of treatment and last spinal tap, and got the call that instead of celebrating the end of treatment the cancer had spread and instead of a party they were re-inducting and starting all over. I think that story is always with him and he feels we need to have the scans and hear the "all clear" before we celebrate. So any plans for that will be announced later.

I struggle with coming to the end of treatment because we have so many kids we have grown to care for that will never to get to this point. I could name so many kids that have passed away in these past two years that will forever be etched on our hearts. Tonight, one n particular comes to mind....

Last night, our family sat down together and watched the movie Letters to God. If you have not yet seen this movie it is available for sale now. This is a movie about a young boy with cancer and how God used his pain to teach others to seek God for answers. It hit me again powerfully that what these kids are going through inevitably forces questions to arise in us about God and man, and life and death. Our only hope is that in all of that, those questions would lead people to seek God for the answers. We don't claim to have them, but God does, and He is faithful and will answer the earnest prayers and questions of your heart.

Prior to watching the movie, CJ , his sister and I had already read the book to prepare us so we knew pretty much what to expect. But dad, however, didn't!

Half way through the movie I had this sense that when I checked my emails after to see how Sam Bish was doing (the little boy at the end of his battle with Osteosarcoma bone cancer) , he was going to be free from cancer and in Heaven. Somehow, I just felt it and knew it! I even said to my family after the movie, I am going to check on Sam and I bet he passed away. Therefore, I was somewhat prepared for this as I checked my emails after the movie. However, I was in no way prepared for what I read.

There was an amazing post on their site by their pastor just before he passed. He had shared a story about Peter in prison, and called on the church (all believers) to pray for Sam between the hours of 5pm and 9pm asking God to release Sam from his 'prison' (his body) just as the believers prayed earnestly for Peter in Acts 12 when he was in prison. At 7pm, right in the middle of the earnest prayers of the church on behalf of Sam Bish, God released Sam from his prison of cancer and a failing body in pain. Sam is cancer free and with his Savior! Praise God!

My family read the entry together and were amazed that this post from the pastor was followed up by the one notifying us of Sam's passing at 7pm. God is so kind. As people earnestly prayed asking for God to release Sam, God was faithful and took Him home. I looked back over my shoulder to say something to Chris and he was not standing there anymore. I went to find him and he was face down...praying. It was too much for him between the movie and Sam. He was not prepared as I was because I had read the book first and already grieved for little Tyler in Letters to God and my heart was prepared for what I was about to read about Sam Bish. In my heart, I knew he had passed. I felt terrible for Chris but knew he was where he needed to be for his Saviors feet. And all I could do was let him be there. Before we went to sleep he suddenly spoke, "I thought that movie had a happy ending." I thought about this for a moment and replied, "It did!"

I know we will never fully understand any of this until I get to heaven but our idea of a 'happy ending' does not always line up with God's plan and His idea of a 'happy ending.' I think the happy ending is there when our focus is on Christ and what He gained for us on the cross and not this temporary life and what we have lost. So, yes... Sam Bish is a Happy Ending. His family will have eternity with him and that is greater than any temporary time on earth. I know this is easily spoken from the lips of a mother whose child is about to end treatment and I am not staring at a casket today. But I have experienced great loss and grief in this life. and I cam openly confess that I don't want to lose CJ to cancer, but I can even more adamantly admit that I am more afraid of losing him to the world than I am to cancer. I know it probably sounds crazy so forgive me if I am offending anyone.

I also know that 'survivors guilt', as we come to the end of treatment for CJ, is completely unnecessary, but it is always with me in some way or another. I hate losing these kids! We mourn for each one and their families. Running CBC has afforded us the opportunity to be a part of some amazing lives and each time we lose a child I cannot wrap my brain around it. I just hope and pray that we can continually be good stewards of what God has allowed us to be a part of both directly and indirectly through this amazing journey.

Here is the link to read the amazing posts on Sam Caring bridge Site but be sure and come back to finish this post for CJ!

On a positive note, I can tell you that CJ is excited about the Light the Night walk at the end of his treatment and the fact that he has been selected as an honored hero for the Broward Walk Campaign this year. On Thursday, he spoke at yet another corporate event for an engineering firm Kevin and Schnars. This was an amazing company that was very welcoming to us. CJ shared his story with a large group of engineers and employees there. I hope they went home inspired because CJ sure did.

He is supposed to motivate these teams to boost their fund-raising and he came home motivated. On the way home, he was excited and talking about all his ideas for fund-raising for his Team. He decided to start selling the paper balloons that you would see in stores. He figured he does not have a business but he could sell them and cover his door and the walls of his room. He already started this and we are so proud of him.

Here are some pictures of his door so far. Thank you to those who have bought paper balloons to support Team CJ end of chemo walk....

If you want to donate and have a paper balloon hung on his wall with your name on it they are available for $1.00 (or any donation you would like to make to his Team) I hope and pray he is completely surrounded by these balloons by the time the walk comes in November as a reminder of the many people praying and supporting him. For those far away, you can also donate by sending a check made out to us and we will write a check to Light the Night on Team Bank Day. Or you can go directly to CJ's Team page and make a donation there or even join his team and come walk with us. It is going to be a very special walk for CJ this year!!!

Here is the Team Page for TEAM CJ end of chemo walk!

Note: CJ's End of Chemo Light the Night Walk is November 13th
at Huzienga Plaza in Ft Lauderdale from 4-7pm

If you have a business or a way to sell these paper balloons for TEAM CJ for his end of chemo Light the Night walk please contact me so I can get a pad of them to you. It is so simple. His sister Allie asked her orthodontist and they said sure and started selling them. You can ask any business you frequent often. Don't forget to join his Team and either start fundraising or make a donation to his team that way as well. Please Note .... all the money for Team CJ Light the Night walk will go to fund research for blood cancer cures.

Our prayer requests are that we would continue to walk through this with our eyes fixed on Jesus the author and perfecter of our faith. When our eyes our off Him we dwell on our circumstances, we become easily overwhelmed and begin to question all that is happening to us and around us. But when our eyes are on Him and the Cross all else fades away and seems insignificant in light of Him and the glory he Has achieved and secured for us.
It reminds me of the lyrics to the famous hymn Turn Your Eyes Upon Jesus....

"Turn your eyes upon Jesus
Look Him full in His wonderful face
And the things of this earth will grow strangely dim
In light of His glory and grace"

Please pray for peace for the Bish Family. We pray that they too can focus on their 'happy ending' when they are reunited with their son in glory and in the meantime the Lords presence will reassure them and comfort them.

Thursday, August 12, 2010

Mixed Feelings

After spending a week in such close quarters with so many kids with cancer and watching many of them suffer the side effects of their medications and treatments, any guilt I was feeling for how well CJ was doing is gone now that we are home and he has done nothing but puke and feel sick continually. He tires easily and is constantly plagued by an upset stomach and struggle to eat.

I looked at him the other day and commented, "you would think he was on chemotherapy or something", which was a lousy attempt at a joke on my part. We have been so spoiled throughout his treatments by his ability to tolerate the medications with minimal side effects that it has been difficult to watch him struggle these past weeks. He does not bounce back after his chemo like before. The anxiety this creates for Chris and I as we near the end of treatment and upcoming scans is undeniable.

I shared in our last entry that one of the things that surprised me most at the family cancer retreat was the families that shared being off treatment and done with chemo seemed to be struggling the most. That is the goal after all, so why is there so much anxiety when we finally get there? There is the assumption that parents who have walked through the journey of childhood cancer and get to that last appointment walk away with a sense of relief and even jubilation. And maybe in some sense they do. I don't know because I haven't walked out of the hospital for that last time yet.

However, that time is fast approaching for our family. Tomorrow (Friday Aug 13th) CJ will go to the hospital for chemo and a spinal tap and intrathecal chemo (chemotherapy injected directly into the spine). This is not his last chemotherapy appointment but it may be his last spinal tap after months and months of this form of chemo and monitoring of his spinal fluids for spread of the cancer. I am not sure what I feel. To be honest, I have a wave of mixed emotions.

I am happy for him that this will possibly be his last spinal tap. I can not even count how many he has had these past two years. More than couple dozen easily. That is over 20 times I have stood there and watched him be put to sleep, rolled on his side, a needle injected directly into his spine to allow the spinal fluids to drip slowly, followed by another needle injected to deliver chemotherapy directly into his spine, then stood over him and prayed waiting for him to wake up. Why would I not be happy that this will be his last time to endure that and for me to stand there and watch and pray over him as the process unfolds. It makes no sense other than to say there is a strange comfort in knowing you are doing something, anything to fight and prevent the cancer from spreading. I have in no way placed my trust in chemotherapy as a means of healing but have accepted it as one instrument God has used in healing my son. Still, words elude me to describe the mixed emotions.

CJ has already began his pre-chemotherapy struggle of surrendering to the fact that he has to go tomorrow even though he does not want to. I have shared with him that it may be his last spinal tap thinking this would cheer him up and this only frustrated him as he cried, "I did not know I was getting a spinal tap tomorrow also." Then I wished I just did not say anything in the first place. Nothing I can say really helps. He just needs to work through the mixed emotions he feels when he has chemotherapy just as I have to work through mine.

Please pray for CJ as we near the end of treatment. His body is fighting this battle right up to the end. It has not been easy and we could not be more proud of him. After two years of chemotherapy, his body is weary and it shows. But his spirit is strong and that is what matters most. He has found rest for his soul by trusting in his savior, and now we need rest for his body.

Please pray that whatever is going on in his body that is causing the nausea and vomiting is just side effects from the treatments and that the cancer will remain in remission for good! Please pray for our transition into the end of treatment next month and clear scans allowing us to walk away from chemotherapy for good. Please pray for peace over our home for Chris and I, for CJ, for CJ's siblings, and for the two beautiful children we are raising right now.

I think in some ways we are all a little weary. Yet, we are also refreshed if that makes any sense. Like I said, mixed emotions and a loss of words to adequately explain it.

Thank you for your prayers. Our thanks could never be enough.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."
(Matthew 11:28)

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