The last couple of years have been a whirlwind in our lives and I feel like I can finally discuss some of the feelings and thoughts I have had over the past two years. Brian is an awesome trooper that taught me a tremendous amount through this test. God has used this time to make my life radically different than it was.
So, we go in to the Dr.and he gives us the run down of what is going on inside little Brians body and what the "roadmap" of treatment was. We had so many questions unanswered as we were whisked away to the oncology wing of Sacred Heart. Is this Cancer? Is this multi system and if it is, what will his treatment be? What is chemotherapy like and what is life going to be like? We had no idea so I naturally went to tough guy trooper that has to be strong and power through this. Now inside I was as scared as Brian and Carrie and extremely uncertain of what to do. On brief occasions I would share with Carrie how I felt but it was few and far between.
So by Friday of the first week we were ready for the first treatment. The nurse walks in wearing a hazmat suit because if the Vinblastine gets on her skin it will burn her. HE IS THREE!!! What are we doing to him?? Can you think of the apprehension and destress this causes? Tough. So we do it and he responds well. We get to go home but not before the nurse said "maybe this can be his room when he has to come back?" Huh? We'll be back for sure? How often and why? Remember we have been seen by a slew of Dr's and nurses and performed 20 different tests. We finally got home and searched online and talked it out and this is what we had to do. So I attempted to show no weakness and just be strong becuase we have no choice. The first time we go to treatment I have to physically restrain him as he yells through tears of fear and anger "daddy let me go, don't hold me down!" Choking back tears I just say "Brian we have to do this Daddy loves you but we have to do this." Wow! God must not have understood how hard this was to watch your son go through this. At this point in treatment I was angry and failed to realize that He knew exactly what it was like but infinitely worse. I hated that God was sovereign because His sovereignty was my son, my wife and my family's pain. Brian did eventually fight less as he became more accustomed to the process and his body got a little weaker, so there was no real joy in that.
I reacted like any rational person would I escaped through every means possible to the detriment of my family and my body. I did not have a good coping mechanism and it was killing me that Brian would not speak with me after treatments. He always told Carrie "I love you Mommy" and would make sure I heard and that it was obvious he was not saying it to me. Then bills I couldn't pay started coming in, bosses that wanted to fire me came in to being and the economy is awful. It all added up to a disaster waiting to happen. While I am here I will say a few things that are important to remember. As with most childhood cancer LCH has a great prognosis and is rarely fatal. Good news, but the process is brutal with 3-4 different dr visits a week. It was difficult and we did it, but I could not handle it and I proved that at least once a week by blowing off steam in innappropriate ways.
We got to the end of the first round of treatment. We thought it was gone and that we were on the path to freedom. Yes, there were multiple tests to be run every so often and numerous Dr. visits but we could manage that. God was not done with us. Brian developed symptoms again inside of 3 months. Now we had to explain to a now 4 year old he had to go get another port, he had to have more chemo and he had a bunch more dr visits. I remember going into his room and him just very honestly telling me how angry he was at me that I had to hold him down and just how scared that made him. It was like a knife ripping into my chest cavity and ripping out my heart. I had responded to his anger with anger and we were now at odds but I loved him so very much and was dying inside.
All of this brought up some painful memories of my childhood that had not been dealt with. I ran further and faster from God because He was and is sovereign over all these situations. His ways are higher than ours and His thoughts are higher than our thoughts. We would never chose to hold down our son and watch them put a needle in him and see his cries for release and having the ability to provide the release but not offer it, would we? Thankfully God did, but I was not there yet. So it finally came to a head one night and some amazing people like my wife, our pastor and my in-laws came alongside me and I finally admitted I could not handle this. It was WAY too much.
I turned towards God, softened my approach towards Brian and just prayed. God's sovereignty brought me to this point were I acknowledge my need for Him in every matter of my life. The goal of God's sovereignty is not my happiness here on this earth but rather an eternal life with Him. It is painful every 3rd Wednesday to take Brian to Chemo. Just two nights ago I wept as I prayed for Brian only after he mentioned how his treatment was impacting him. He is 4 and has prayed for months that he will be off chemo by the time he is five. He won't be, in fact he will be on treatment for 8-9 more months. (By the way if you know me just write that down. Don't ask me if he is still on treatment or almost done. It seems like you don't care if you can't remember that.) All that being said I am right were I need to be...on my knees in front of God begging for Brian to understand what is going on and still love God and his daddy.