Monday, September 13, 2010

Don't Waste It!

(Picture: A surprise Allie made for CJ to open
after his last chemo since she could not be there!)

Today, September 13th, is Childhood Cancer Awareness Day. The entire month of September is National Childhood Cancer Awareness Month. The symbol is the gold ribbon. See it everywhere? See people hosting fund-raisers and wearing gold ribbons? See the stores displaying all their gold and helping raise awareness? Didn't think so! Just wait till next month......October is breast cancer awareness month. You will see so much pink it will make you crave Pepto Bismol just to settle your stomach. I'm sorry...I did not mean that! Well at least not in a, "I don't care about breast cancer sort of way." One of my best friends battled breast cancer and shared her journey with me intimately which I will never forget, my aunt battled breast cancer, and another friend is now battling breast cancer. I care about breast cancer and I am glad it gets the support it does. I just struggle with how little support and funding and attention childhood cancer gets.

I won't bore you with the statistics but they are there if you care to read them. The cures rates don't compare, the funding for research would make you think you misread the numbers, the amount of support...well, see for yourself when October hits. The other day I was driving down the street with CJ in the car, on our way to Joe DiMaggio to help raise support for childhood cancer awareness when I noticed a crowd of traffic. The fire-station by my house was hosting a car wash for breast cancer. I couldn't believe the crowd. I saw CJ's face. He looked over and said, "Mom, isn't childhood cancer awareness month now?" Of course, that does not mean that breast cancer or any other great cause can not raise support in the month of September, but I did not see any other car washes for childhood cancer on the way.

This is when I remind myself that the Susan G. Komen foundation had to start somewhere right? I believe I read somewhere that it took them over 10 years to get the awareness they have. And that is exactly what Children Battling Cancer (CBC) is committed to doing. We chose our logo as the gold ribbon to help raise awareness and we are committed to bringing hope and help directly to the families in the thick and aftermath of the battle. We will support the families as well as causes and events that seek to raise money for childhood cancer research. So it is my great hope that in less than 10 years you will see gold ribbons everywhere during September and portions of many of your proceeds will go to childhood cancer research and we will put a dent in the number of children losing their lives to cancer, which remains the number one disease killer of children.

I have great respect for what the breast cancer foundation is doing and am grateful for the strides they have made. For all I know, I will someday be one of the lucky ones to have a 95% cure rate if I am ever diagnosed. My only how is to see people take the same interest in childhood cancer some day. The rejection we often face while raising awareness is heartbreaking. If you did not see the parallel displayed on the news link we posted to facebook here is the Video It says it all.

Wow! That is not what this post is supposed to be about. Excuse my little tantrum and I apologize if I offended anyone. Instead of deleting all of the above, I will entrust it to you for what it is worth and redirect my thoughts and heart from here on in.

What this post is about is CJ! As I mentioned, before I got off course, September 13th is Childhood Cancer Awareness Day! Ironically, it is also the very day that CJ was diagnosed with cancer. September 12th he had the MRI that lead us to be rushed to the emergency room and then transferred by ambulance to the Joe DiMaggio Children's Hospital in Hollywood, FL. But it was not until the next day, Sept 13th that I was told my son had some form of cancer. I did not know then that it was Childhood Cancer Awareness Day or even that it was Childhood Cancer Awareness Month. So I ask you....coincidence or providence? I'll let you decide.

I still can not believe it has been two years. I am going to share with you where we are now and how CJ's final clinic appointment went for him and our family.

The day started off well enough. I got up early and spent a good portion of the morning on my face thanking God for CJ's healing over the last two years. Running this foundation and working so closely with childhood cancer has taught me more than anything that there was never a guarantee that we would make it to this day no matter how many people continued to reassure me we would. I also know it has nothing to do with anything we did to protect CJ during these two years, or where he was treated, or what type of cancer he has. It also has nothing to do with God hearing our prayers any more than He heard the prayers of the other parents whose children did not make it to the last treatment. It has everything to do with what God's plans are for CJ's life and it is evident, those plans are not yet done here on earth. As I prayed I was also very aware that many families do make it to this day only to re-enter the battle all over again within months or years. That is not to say I am heading into this post treatment phase as a pessimist but rather as a realist.

Please hear me when I say, I am so grateful that CJ is still with us. Everyday is a gift and everyday I look in his face and I see Andrew, Carina, Amanda, Carey, Brett, Sam, Tyler, Luke, Anthony, Jessica....and so many other kids that are no longer with us. It is my hope and prayer that I can somehow love and raise CJ in a way that honors those kids and their families. I don't ever want to take for granted that CJ is still here, but please hear be gently when I say, I am more afraid of losing my children to the world than I am to cancer. My goal was never survival. It was and will always be eternity. Eternity with the Lord. No matter how long they live on this earth, they will spend eternity somewhere. That matters more to me than the brief time they spend here on earth with me. I want them with me here yes! But I want them in eternity with me more. That may be hard for some to hear and I was the type of parent who could not have said that years ago. But I can tell you now that I pray more for their souls than I do for their lives. A life well lived will not be measured by the length but by breadth.

Thursday night before the appointment was very difficult for me. I was up late working on some CBC stuff on the computer when I read about another child that had just passed away, which lead me to read about a few more I was unaware of that passed away during September. My heart was heavy and tears were difficult to hold back. I realized at that moment how precious the next day was no matter what the future holds. Before going to bed, I reminded CJ that the next day would be his last clinic chemo and I cupped his little face in my hands and looked him dead in the eye and challenged him soberly, "Don't waste it!"

He knew exactly what I meant and what I was feeling when I said that. He knows it is a gift. He knows he has been set apart for Christ and he wants to fight with all his might to be a vessel God can use. I will do everything in my power as his mother and as his sister in Christ to stand by him and encourage him. And I will continue to fight like crazy when he is attacked by the enemy of his body and soul. But I will also never stand by idly and watch him waste this amazing gift he has been given.

With all the great intentions, and the great start to my early morning, Friday did not quite go the way I envisioned. We prayed in the car while the family was all together but this was interrupted by CJ struggling with his Emla cream on his port and Corey demanding something from his car seat. I just love when I try to be all holy and set a good example and get our family focused on God and we end up arguing and frustrated instead. Please tell me that doesn't just happen to us! Instead, I just finished praying silently and we headed to the hospital with CJ really frustrated about his port.

CJ did his blood counts first when we got there. His white blood cells came back low which lowered his ANC. Even though he was in the lower range, they were able to order his chemo while we waited. I watched all the new families with their adorable bald little children. I wondered where they were in treatment and what they must be feeling as we waited on CJ's chemo. I wanted to know each one's story and encourage all of them but it is such an awkward place to describe. I don't know what it is but you can be sitting in this room full of people with kids with cancer and everyone is afraid to ask the obvious..."What does your child have? or When were you diagnosed?" I noticed a slew of teenage boys there that day. They are common Leukemia diagnosis. I wondered what it would have been like of CJ were a teenager when this happened.

While we were waiting on CJ's chemo, one of the therapy dogs showed up for CJ with a balloon tied to his back and a note taped to his chest that said 'Congrats CJ!' That was very thoughtful of them to set up for CJ and it did make the day feel more special. When CJ saw the dog, he used that opportunity to tell the nurse that his mom promised him a dog when he made it to maintenance and never got it for him. And that I promised him one when he finished treatment and I still have not come through on that. Maybe when the port comes out! Ha! Lucky for him God is not slow on keeping his promises; only mom is.

CJ's chemo came but we were told just before they administered it that his liver function levels were high on his blood work and that the protocol calls for only half a dose to be given when this happens. That was a bit of a surprise because it has never happened before. It was also a great reminder of why we are so thankful to be ending all these chemo injections. Although it has been a huge weapon in fighting the cancer and keeping it at bay, it is also wreaking havoc on CJ's organs. It is "poison" as far as his body is concerned and side effects and long term damage are always a concern for us.

CJ handled his port access well and we took lots of pictures and some video which we will load up for you all that have followed his journey. As he was getting the push, the nurses and Lotsy began singing the famous "end of chemo" song. It was quite the spectacle.

So where are we now? CJ is home taking his 5 day steroid regimen that always follows chemo. He will continue oral chemo for the next week and he has to go back in two weeks for counts to check his levels and be sure the liver goes back to a safe range. He has to have his port accessed and flushed every month until it is removed. Hearing this, it seemed to CJ like not much has changed. At least not yet. To him, this will all feel over when they take the port out of his chest. As long as he is getting accessed and doing blood counts and taking pills at home it really feels no different to him....yet. But it will. Slowly but surely.

Chris and I on the other hand are finding ourselves presented with the opportunity to fully rely on God again. While speaking with the doctor about the next steps for CJ's end of treatment we were told that CJ will not be getting any end of chemo scans or biopsy. Nor will he be scanned continuously through the next couple of years like we originally thought. That was a surprise to us! We are not really sure if this is just the protocol for CJ's type of cancer and staging or if it comes down to insurance politics. We have asked to speak to his primary oncologist to understand this better.

Our concerns would be that CJ's type of cancer did not show up on any blood work we did for the 8 months we were trying to figure out what was wrong with him even though he was Stage 3 by that time with multiple tumors throughout his abdomen. It also never showed up on any x rays. Three sets to be exact! Huge tumor wrapped around the spine and not one x-ray revealed it. So our question would we just wait until the tumors are advanced enough to cause him enough pain to complain and then get some scans? And the answer is, we are once again presented with the opportunity to trust God and His timing and His care for CJ above our own or our desires to have clear cut answers and results.

CJ's journey is not over. It has only just begun. We are excited for some of the upcoming and exciting things he has going on as treatment is ending. We will share some of them shortly.

Please continue to pray for CJ as you think of him that the Lord will continue to heal him and use him. Please pray for our family's peace as we enter into this new phase of post treatment. We are anticipating the changes it will bring with uncertainty. We are very aware that many of the families we have met seem to enter into a period of Post Traumatic Stress Disorder shortly after treatment ends we are hoping to prevent this by staying focused on what God is doing in our lives right now and not get caught up in the past.

Please continue to pray for all Children Battling Cancer throughout the month of September. If you have not requested your chemo bags please send me an email and I will mail some to you so you can participate in this great awareness fund-raiser.

If you think of it please pray for me as I continue to struggle emotionally with the suicide of my father. Oddly enough, September 10th was National Suicide Prevention Day. Add the anniversary of 9/11 into that as well as CJ's cancer diagnosis on 9/13 and September is turning out to be a very deep month for us emotionally.

CJ getting his last chemo.

CJ and his buddy Lotsy

Daddy and CJ Mommy and CJ

CJ and the therapy dog

Corey hugging his big brother