UPDATE FROM ETHANS CB SITE Ethan has been doing fantastic, coming in at an amazing 90 lbs. today! We are both very thankful we were allowed to do todays labs at our home hospital. Besides platelets being low in the 60s, all other counts looked good. On the way home from clinic, I drove quietly as Ethan asked an occasional question here and there. In my head, so many thoughts were racing quickly around. If the LEE011 can shut down the CDK4, what will stop this relentless disease from using another pathway to proliferate? If the LEE011 doesnt work, what next? Were in the most strategic chess match against an opponent who seems bigger, smarter, and more powerful than we could ever be. I do imagine life without Ethan and it breaks my heart into pieces that just cant be put back together. I know science says that Im eventually going to have to tell my young son he is going to die. I dont want to ever have that conversation with him. I dont want my three younger children to endure the searing pain of burying their brother. I dont want to live the rest of my life as a mother who lost her son to a cancer that couldnt be stopped. The suffering this disease dishes out is full of such raw excruciating pain. As these painful thoughts were making my head spin on our drive home, Ethan, sitting next to me in the front seat, said, Mom, I really liked the sermon yesterday. Did you? Telling Ethan I did really like it, he proceeded to tell me exactly what he liked about it. Something [the pastor] said really stood out. I was really moved when he talked about joy and happiness. I realize I dont have to be happy about everything Im going through, but I do have keep the joy that comes from knowing Christ. That sermon, out of Philippians 4, also discussed topics such as anxiety, prayer, thankfulness, and rejoicing in the Lord. Philippians 4:6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Ill be the first to admit that I havent always done what this verse asks me to do. Just the mention of December scans today made me literally feel dizzy. Over three years, Ive had to really pray for the Lord to help me let go of the Spirit of Fear, allowing the Spirit of Power He has given those who believe to calm me with a peace that transcends all understanding. Casting my fears onto to the Lord is something I struggle with continually on this journey. But yet, what my son said today really spoke so deeply to me. Yes, I absolutely need to give up 100% of the anxiety that comes with the unknown future that I cannot control. But, like Davids cries seen in the Psalms, that doesnt mean I have to be the most vibrantly happy person right now. Its okay to hurt and mourn over what my son goes through on a daily basis. My son has stage IV high-risk unfavorable neuroblastoma that has relapsed and progressed mulitple times. If, as a mother, you could go around bubbly and full of bliss with that burden hanging around your neck...well, no mother could. I think of all the endless suffering in this world. Just last night, a precious little boy we met in NY passed away from this insidious disease. To think that a mother held her little boy as he took his last breath makes my heart want to burst out of my chest in agony. Like David, my soul is in a state of deep anguish. People all over this world are in anguish just as deep and even far deeper than mine. Daily I ask the Lord, How long must Ethan suffer? How long before you turn and deliver him? I dont know the answer to those questions nor do I know if He will ever deliver my son on this earth. All that I know is my son is facing one of the most brutal, relentless cancers that chases after children. Im not happy. My son is not happy over the disease that resides within him. What that disease has done and continues to do to him has all of us in suffering that knows no end. But like my son, my heart hurts as one whose hope is in Christ. The grief might be intense, but the depth of my joy is far greater. Daily, Im crying out to God in groans only He can understand. Daily, Im presenting Him with my fears and heartache, thanking Him for who He is right along with them. By the grace of His peace that transcends all understanding, I can put one painful foot in front of the other as we walk down this daunting path, knowing the glory to come is far greater than any of this suffering. Your prayers are always deeply appreciated. Ethan is looking forward to some hunting with his Pop this week before heading back to Boston on the 4th. Scans are the week of the 10th. I pray everyone has a blessed Thanksgiving, giving ultimate thanks to a Lord who died so we might have the ultimate joy of eternal life with Him. Please also pray for the family of little Eddie, who passed away from this disease last night. He has three older siblings who need to be covered in prayer right now as well as two parents who adored him.
Posted on: Tue, 26 Nov 2013 01:04:56 +0000
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