Before I begin, let me say I know this began before I am even aware of and I do not presume to know when God stirred these events into motion or if He just nodded His approval as they were stirred into motion by some other means. What I do know is that not one thing that has happened to CJ was not filtered through God's sovereign will. Since I can't tell you from God's perspective nor would I even try, I can only tell you how it happened from our earthly perspective.
First, I want to just touch briefly on CJ's childhood to you. I know this may sound like hindsight to you with all that is happening but it is true that all who knew CJ well from the time he was very young would say to us that God had a calling on his life and he would do something amazing for God. We used to call him our little minister. He would say strange and insightful things as a young child. He would speak deep spiritual truths without even knowing he was doing it. He would ask spiritual questions we usually couldn't even answer. His compassion for others far outweighed anything I had ever seen in a child. Let me say that I know many kids are special and display their own unique qualities, and we in no way are declaring him more special than any of our other children or anyone's children but I share this to say that we believe these are all ways God prepared our hearts and his for this time. Furthermore, although this is an unbelievable shock to us, there is still a stange sense of quiet knowing.
As a young boy CJ went through a time when he began to struggle with fear and anxiety which caused a few panic attacks. By about age 6 this was gone and he grew into your typical young boy who loves sports, guns, games, friends, family and God. We are a faith filled and family oriented family. We are an active homeschooling family and in the middle of the 2007-2008 school year (his third grade year (age8) the anxiety suddenly began again. He began struggling with panic and anxiety over things he had previously had no difficulty with. Simultaneously, he began to struggle with stomach issues. His stomach always seemed to hurt. He spent more and more time in the bathroom. In researching this on the Internet a little I would look up anxiety and it would say "rule out stomach problems first which can cause anxiety", then I would look up stomach problems and it would say "rule out anxiety first which can cause stomach problems".
Therefore, we faced the dilemma of separating the two and treating them as separate issues that could be closely related. We took him to his Primary Care Physician who has been by our side throughout this whole thing. He referred CJ to a GI who ruled out any major stomach problems and said maybe it was Irritable Bowel. He had blood work done both by the Primary Care physician and by the GI. There were no signs of a problem.
Then, in about early May, he began having some back problems. He would complain of back pain but it seemed to get jumbled into all the other things he was complaining about at the time. It just seemed like one more thing that hurt and we thought it was related to the stomach issues. He would get constipated and then finally be able to go and say his back felt better so we thought his back pain was from constipation. On a trip to Gainesville at the end of May he had his first bought with severe back pain. We had celebrated my nephews birthday and had spent the day on a slip and slide. Later that night he woke up with severe back pain. Assuming at first that he was constipated I sent him to the bathroom. The next morning he was still hurting so we assumed he must have hurt it as he threw himself down the slip and slide. It hurt just watching him. We went home and he began to feel better.
In June he started playing flag football and riding go carts. The back pain came back again. This time he woke in the middle of the night crying about the severe pain. This incident lead to 2 ER visits in a matter of 3 days. X rays were taken, blood work, urine and nothing seemed wrong. They had no explanation for his back pain and we assumed it had to be the go cart riding we had done the previous day as the onset of pain. We were told to follow up with our primary and we did. He wanted to follow up and referred us for an MRI. We had an appointment set for back on July 7th. We got a call two days before the appointment that our insurance company had denied his approval for the MRI. Our Primary Care's office spent hours on the phone trying to get it approved for us but to no avail.
Soon he began to feel better and was even playing flag football on Saturday mornings. His stomach problems were increasing all the while and he was spending more and more time in the bathroom. This is when I started saying things to my husband like, "There is something wrong with this kid." We knew something wasn't right but we couldn't quite put our finger on it. It just seemed like he was never feeling well. Something always hurt....his stomach, his back, his hips, his legs. We could not pin point an area that was the problem. We couldn't decide if each symptom was related to another or separate. He began missing birthday parties, church and time with friends. I guess I knew something was wrong but never quite imagined anything like this. I thought maybe an undetected hip injury or abnormal development, or maybe severe growing pains. But since we had not been approved for the MRI we had no way to figure it out.
One weekend in August, CJ once again came into our room in the middle of the night and was once again having severe back pain. This lead us back to the ER. We did the same routine of x-rays, blood, and urine. They did not perform any new tests. They diagnosed him with Sciatica and said to follow up with the primary. This struck me as an odd diagnosis for a 9 year old boy and no new tests were performed even though we had been there 3 times in the last couple of months for the same problem. When I followed up with the primary, he really did not like the diagnosis of Sciatica and was upset the MRI was denied so he referred us to an orthopedic specialist. He knew we would either get some answers or we would get the referral for the MRI through him. So we went and took x-rays that once again showed nothing. Thankfully, the orthopedic was very thorough and felt CJ was presenting atypical so he referred him for the MRI. This referral was almost denied as well. The day before we were supposed to go we were told they were having trouble getting approval for it from our insurance company. Thankfully, the orthopedic office followed through and spent almost 6 hours making calls and fighting for the MRI. We are very grateful.
That MRI was scheduled for the very next day, September 12th. And as most of you know that have followed the blogs from the beginning, that routine outpatient MRI lead us here with a diagnosis of cancer.
As a parent, my heart aches over the time that elapsed while CJ was struggling and suffering. I am ashamed to say many times I was frustrated with it and would not be as compassionate as I should have been. I know this story makes it sound like we were diligent parents and did all we could but there were so many times he was struggling and we could have done more and been less selfish and more understanding. We have both asked CJ to forgive us and he has. We have both asked God to forgive us and He has. Now we must accept that and do all we can now to help CJ go through this. The first few days the temptation to drown myself in condemnation was great. I kept thinking I should have done more, been more, felt more, said more, tried more...so on and so on. But I kept washing my mind with Romans 8:1 "Therefore, there is now no condemnation for those who are in Christ Jesus, because through Jesus Christ the law of the Spirit of life set me free from the law of sin and death." I also realized that "Godly sorrow brings repentance that leads to salvation and leaves no regret, but worldly sorrow brings death." (2Cor 7:10) So I trust in God's sacrifice to cover my sins against my son during that time. As tempted as I am to punish myself and allow shame to consume me and, I would be saying my ways are higher than Gods and my standards are higher than His.
That all said, I know many of you are angry about the MRI being denied. We too are very angry when we realize we could have been attacking this cancer over two months sooner and CJ would have had 67 days less of suffering. My heart aches just thinking about it. All I can say to that regard is that I must believe God's timing was perfect. He knew exactly when we needed to know. One reason we are so sure of this is that there are a series of events that I could list that took place in that last month that had to happen before God allowed us to know. Even up to the the very night before the MRI appointment God was preparing us and those around us. I can even look back and see His guiding hand in this clearly as far as two years back. And I am not talking about coincidences. I am talking about things we could not explain at the time or understand that are all crystal clear now. For example, why God prevented us from moving away from South Florida when we really desired to and took all the necessary steps to. Another being God leading us to a church home that is like being in the very arms of God Himself in their shepherding and care for our family. Even starting this blog was all part of God's plan. And the week before this diagnosis my family attended a conference with our church which was a time God used to prepare the soil of our hearts for this journey. I have to focus on that when I am tempted to become very angry at AvMed. I will write them a letter when the time is right. I will tell everyone I know what happened so they too will protect themselves from needless denials. But until God shows us otherwise we are clinging to Romans 12:19 " Do not take revenge, my friends, but leave room for God's wrath, for it is written: "It is mine to avenge, I will repay" says the Lord. God has already began that process in the form of my aunt who heard our story. She is the administrator for a large firm and their insurance was up for renewal. Although AvMed came in well under the other bids, she told the representative to her face that they would not go with them because of what they did in denying CJ's MRI. They have already lost a $113,000. contract due to their denial of CJ's MRI. God sees!
Well, that is how we ended up with a diagnosis of Acute Lymphoblastic Lymphoma. Ours heart ache at the diagnosis, yet we rejoice that it is a treatable cancer. We are trusting God and seeking complete healing for CJ. We are humbled at how God has moved His people to support CJ through this; many of whom don't even know CJ personally. He has been so uncomfortable and in pain for so long that we long to see him healthy and free from the worries of stomach and back pain. We long to see him running and playing the sports that he loves and bowing to serve the God that he worships! But most of all, we long to see God high and lifted up. Exalted as King of Kings and Lord of Lords. We long to see every knee bow at the name of Jesus Christ!
Thank you for letting us share CJ's story with you.