This is the note I woke up to one morning early this week. CJ often leaves me notes to find in the morning. Most are filled with words of thanks for something or encouragement when he senses I am down. Some are filled with scripture and expressions of love. So you can imagine my surprise to wake up to the above note expressing quite passionately his hatred towards Cancer. My heart ached for him when I saw it because I knew he wrote that note after everyone was sound asleep and he was up all alone fighting against going to bed. He wasn't fighting sleep per se but fighting the fact that his hair is falling out again. He refused to lay his head on his pillow only to wake up and see it covered in hair in the morning. So he grabbed a blanket and set up camp on the recliner in the living room that night. Ironically, the blanket he grabbed and wrapped himself up in was covered in a poem that describes all the things cancer can not take from you. Things like Hope, Peace, Friendship, Love, Courage, Memories, and Eternal Life. I pointed this out to him and he said the only thing the author got right was the eternal life part. That made me laugh and think: at least he knows his theology!
We continued to urge him to come to bed and reminded him that his hair will fall out no matter where he sleeps. But he reasoned that he would not be able to see it on the recliner. Therefore, he stood his ground and settled in for the night. After trying everything to coax him into his bed, we finally had no choice but to go to sleep and leave him there frustrated and sad. It was hard to leave but I learned my lesson last week (see previous post) that sometimes I just need to get out of the way and let God do His work in CJ's heart.
As much as I hated leaving him there in his grief, I knew I was not leaving him there alone. I knew that God, who loves my boy more than I can possibly attempt to, was there with him. No, he was not safely tucked in his bed, but he was safely tucked in the shadow of the Most High God. I am not exactly sure what transpired, but I assume it was a good fight since I woke up to the above note on the counter and him sound asleep in his bed. I figured that he decided to give in but not without one final stand, thus the note before surrendering to his bed.
"He who dwells in the shelter of the Most High, will rest in the shadow of the Almighty. I will say to the LORD, "He is my refuge and my fortress, my God in whom I trust".......Because he loves me, says the Lord " I will rescue him; I will protect him, for he acknowledges my name. He will call upon me and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation."
(Psalm 91:1-2, 14-16)
(Psalm 91:1-2, 14-16)
When he awoke the next morning, he was all smiles. I thanked him (sarcastically) for the beautiful letter he left me and this brought a huge grin to his face as if suddenly remembering what he had written.
Interestingly, his hair did fall out a lot that night. But it fell out in a manner that evened out all his uneven new growth. It was softer and thinner and lighter and really did look better. Even he agreed! His hair continued to fall out over the the course of the week but he has not complained about it once since that night. So whatever took place in the living room in the wee hours of the night must have been good! Oh, what I would give to be a fly on the wall of his heart during these times of turmoil!
Today, CJ had his appointment for blood counts. We had a short visit with the doctor and determined that CJ has neurotoxisity from the Vincristine (also called Neuropathy). This is caused when damage occurs to the nerve endings. Although unwelcome, it is a common side effect to the medicine he is on. The negative side to this is that he has trouble walking properly. He is still able to walk but it is awkward as his hips don't rotate properly and his legs just don't seem to work right. I don't really know how to explain it. This began gradually and increased quickly over the past two days. The positive side to this is that he does not seem to be in any pain and it is reversible with time. Since he is not receiving chemo for another week the doctors said to just continue to watch him and allow him to do whatever he is comfortable doing. We will continue to keep an eye on it as it progresses or, preferably, regresses.
CJ is due to go back next Friday for an overnight admission. This admission will include a spinal tap and various medicines that require him to be monitored overnight as he receives them. It will also be followed up by home health chemotherapy just like in the beginning.
Furthermore, we are half way to the end of this phase. Today is day 28 of a 48 day phase. Thank you Lord for bringing us to this point and for sustaining CJ. We surrender the remainder of this phase to You and ask for Your guidance and healing to be constant.
Please pray that this Neuropathy reverses with no lasting effects. Please pray that CJ's counts (CBC's) will continue to stay strong even as the medicines attack his blood cells. Most importantly, please pray that CJ will continue to draw near to God for strength and comfort. That He would see God's loving hand guiding him every step of the way.
CJ giving blood