Week one of phase four is finally behind us. Sometimes just getting started is the difficult part. CJ did extremely well and had no serious reaction to the new medicine substitution Erwinia. He was watched closely both by the doctors, nurses, and us at home because this is still an experimental drug. He had a slight swelling of the lips on Monday, but Wednesday and Friday we saw no signs of reaction. He will be watched closely next week as he continues receiving these shots again on Monday, Wednesday, and Friday of next week. He also began a steroid regimen again and that has increased his appetite incredibly. Because it is such a strong steroid and has a high risk for joint problems, he was changed from a taper dosage to a start-stop, start- stop dosage pattern. This is a relief and something Chris and I were hoping they would change. We expect to see much less side effects this way and are grateful for the change in protocol.
CJ's spirit continued to improve as the week progressed. Chris took him on Monday and we noticed he struggled with going and Chris said he seemed down the entire time. I came later and noticed he was not personable or friendly and just did not seem himself. He mostly took it easy that afternoon and rested. By Wednesday, we switched, and I took him to his appointment. We had a good morning and some quiet time alone in our little chemo cubicle before the patients began to pour in. One such patient was in the cubicle next to us separated by only a thin curtain. We could hear them arrive because the patient had a tracheatomy. That means she had a breathing tube inserted in her throat at the trachea to help her breathe. At times, those that are trachead can have a very loud gurgling, slurping kind of sound. I have heard this many times over the last four months and never had a problem. But at this particular time, it was extremely loud and I have to confess it was very difficult for me to listen to. I began to struggle immediately and could not believe I was being this insensitive to another patient. I actually started to get really nauseous and wondered if it was bothering CJ because every now and then I noticed him look over at me or just seem to be listening. Lotsy happened to be there talking to us at the time so I could not leave or move. This went on for 15 or 20 minutes or so and it increasing got worse. I kept praying silently, yet earnestly, over and over confessing that I was ashamed to feel this way and I asked God to help me be more sympathetic. I kept asking God what was wrong with me? Here I am with my child who is sick and I would never want someone to feel this way when they see his bald head or his port, and then another child comes in and I am worried I am going to get sick from the noises. I just keep praying and praying and asking for forgiveness and asking God to give me a stronger stomach. I kept wondering how I was going to make it through the entire day like this and then I suddenly realized.....all I have to do is take one look at the child and it will go away. I don't know where the thought came from...the Lord, the Holy Spirit, myself...but the message was as clear as it gets. "Get up and go look into the face of the child and you will be fine." So that is exactly what I did! I got up and walked around the curtain and I looked and saw the most beautiful, big eyed, little baby girl! She was precious! It was quite a surprise to see a baby. I thought it was a big child for some reason. She was only about 17 months old (same age as my Corey) and I immediately wanted to scoop her up and give her a hug. She looked up and smiled and waved. Her mom was there so I engaged in conversation with her and she turned out to be really open and friendly. I learned that Amanda also had cancer except it was an extremely rare brain cancer. She was diagnosed at age 4 months, had surgery , radiation, was trachead and had a feeding tube inserted. She finished chemo a few months ago only to relapse with a new tumor. Surgery again, chemo for 2 more years and her survival rate just went from 5% to unknown because her cancer is so rare. (That is the short, easy version of a real life story that would blow your mind). I spent the next hour talking to her mom and feeling free to ask many questions both medical and spiritual. I discovered she is also the wife of a law enforcement officer and a Christian. These commonalities lead me to ask her questions about her faith and beliefs in the midst of this trial. She was open, honest and encouraging to me. To be perfectly honest, I had been struggling the past couple weeks with my emotions, thoughts, and tension. I had been seeking God with how to handle it and then here is this little girl and her mother and I immediately realized how blessed I am. Needles to say, I never once felt nauseous after I laid eyes on this precious little girl. Quite the opposite. I was thankful that the sounds were a distraction and that they distracted me enough to get up and do something about it. I would never have talked to the mom this deeply if I was not determined to go over and look her child in the face and say hello. So sometimes, even our inappropriate reactions can be a tool God will use to minister to us and others. He allowed me to see a side of myself I did not like that morning. I was surprised and ashamed by my own reaction and yet through confession and asking Him for help, He provided not only the relief I was looking for, but so much more in the form of blessing and answered prayer to my struggles.
By Friday, CJ was back to his normal upbeat and kindhearted self and we shared some wonderful conversations. We spent time journaling together and making Valentines cards for family. His Aunt Penny came to the hospital while he got his chemo and that was uplifting for him. She got to see how his anxiety builds right before he gets his shots and how incredibly brave he is. Brave! I have been thinking a lot about bravery lately. Maybe that it because I have the privilege to watch a 9 year old boy display it on a weekly basis. Maybe it is because I am surrounded by it at the hospital and maybe it is because I have been studying Esther, a woman of bravery. Bravery would be a quality she displayed when she entered the Kings palace without knowing the possible outcome. Certainly, there was the very real possibility she would lose her life. But more importantly, the lives of those she loved would be lost of she wasn't brave. My situation is, by far, different than that of Queen Esther. But lately, I sense God calling me to be brave none the less. In the beginning of this trial, it used to be a clear call to "trust Him", but I think since we made some progress there, He is now urging me to "be brave". It is the next logical step after all. Once you surrender to trusting Him, He then says, "Take courage and be brave, we have places to go." I know this may not be the typical thing you hear a woman talking about growing in. We tend to relate bravery to a man's world. I am married to one such brave man! But this study of Esther has opened my eyes to bravery in a whole new way. And to discover that a woman of "bravery" is worth far more than rubies! Somehow, I relate to the Proverbs 31 woman in a whole new way! Thank you Beth Moore for uncovering that golden nugget that was buried right before my eyes. It is like having buried treasure right in front of me with only one layer of sand covering it for years and you reached in front of me and made that final swipe of earth that uncovered the riches held below.... how my heart explodes with joy. Yes, God called me, a woman, to be brave!
Like Queen Esther, I also do not know the outcome, but I do know God wants me to be brave in the face of the unknown. I am learning that bravery does not mean I have a strong stomach, thick skin, and no fear. It means I am girded with every ounce of strength the Lord provides and I am valiant because I have One who has gone before, is my rear guard, and who carries me when I can't carry myself. Through this experience, I have become keenly aware that bravery is at a whole new level when it is required to be demonstrated for those we love. It is one thing to be brave in the face of danger to oneself; it is quite another to be brave in the face of danger in order to protect those we love. And that my friends, is love. "Greater love has no one than this, that he lay down his life for his friends." (John 15:13) Do you see the connection? To be brave is to love enough to lay down ones life for his friends! That is what Esther risked. More importantly, that is what Jesus did!
One of the many things I love about God is how kind He is in encouraging my progress when we are learning a lesson together! As stern as He is with me when necessary, is as sweet as He is with me when necessary! He did just that this week. We took CJ to a Valentine dinner at a restaurant called Brio with some family from Venezuela. His Aunt gave him a gift with two movies in it. Both were themed on bravery. She even wrote in his card that she chose these movies for him because "these movies are an example of courage and love."
Over coffee we were commenting on how great the restaurant was and she suddenly says to me, "Do you know what Brio means in my country?"
I have no idea, so I ask , "What?"
She looks me in the eye and says, "It means brave, valiant."
And I just look at her and smile (and have that inside private moment with God) and think, 'of course it does!'
"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."
An excerpt from the journal of a brave 9 year old boy:
"....I know I am almost done (with chemo) but sometimes I feel like I am done and that I just can't go anymore. But I know that with God all things are possible. Through this next two weeks God will be helping me the most. I may only see one pair of footsteps sometimes but I know that means God is carrying me......even the doctor said to me that this is going to be one of the hardest times right now, but I know that God will help me through the tough times..."
Happy Valentines Day!