Amazing how taping Christmas lights around a room can delight a sick child.
Amazing how Justin’s smile reminds me that our Comforter is here with us.
Amazing how strength never fails to come from above when mine is plain spent.
Amazing how I have spare time while Justin rests and can still manage to procrastinate writing out Christmas cards.
We live among shadows. We move from one trial to the next, sometimes with moments of solace in between.
It’s what this world can offer. Imperfect gifts and wavering goodness.
Looking to the lights. Heavenly lights. The Light. Light that cannot tolerate any shadow of turning (KJV).
Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17 (NIV)
Justin is recovering nicely this morning. He said, “Mommy, I think I barfed out the cancer cause I feel pretty regular today.”
I am filled with gladness. And I am also convinced there’s nothing regular about you, Justin.
One of Justin’s chemotherapy medications will be increased by twenty-five percent. We were allowed to choose. We picked the drug that seems to cause the least side effects, although his doctor did say it was fair to assume he would feel worse, in general, due to the increase.
Justin handled fasting, port access and lumbar puncture better today than he has yet. He did not cry or complain or show anger and distress. He was all still waters and bravery.
I don’t like this setback of sorts, but we still have a thousand reasons for gladness. Sometimes the positive and good seem lost in a heavy fog. But resting in Jesus, perspective and sometimes a good bit of waiting, brings joy back into focus. Occasionally plodding and dragging itself, but, nevertheless, still enduring.
Still loopy from sedation, Justin told me I was allowed thirty kisses per day. “And you already used up twenty-nine.”
This week, Justin will have a spinal tap, cerebrospinal fluid withdrawn, to check if the leukemia is still in remission. We will also learn if his chemo dosages will be increased due to white blood cell counts.
What can I do? Nothing. It’s completely out of my control. I’ll be thinking of decorating our Christmas tree with the boys. I’ll be thinking of reading advent scriptures with them. I’ll be trusting God and thinking about the joy of Noel.
Come what may, we have the gift of hope in Jesus.
It’s moments like these that start me sinking. I often think of Peter and his few faith-filled steps on water until they weren’t anymore because his focus turned to the hostile wind surrounding him. This is a perfect picture of the rollercoaster I’ve ridden since we first learned of Justin’s diagnosis.
Sometimes I’m walking on water in faith and sometimes I’m sinking like an avalanche of boulders. But always, always I can look to Jesus for deliverance.
Peter may have temporarily taken his focus from the Lord, but, hey, he got out of the boat. Not necessarily always by choice, we are also often drawn out to a place of deeper faith.
This is my hope. Yes, I sink repeatedly. But looking to Jesus, I rise or maybe am sometimes pulled. But I am rescued. I am always caught by His hand.
Shortly before dawn Jesus went out to them, walking on the lake. When the disciples saw him walking on the lake, they were terrified. “It’s a ghost,” they said, and cried out in fear. But Jesus immediately said to them: “Take courage! It is I. Don’t be afraid.”
“Lord, if it’s you,” Peter replied, “tell me to come to you on the water.”
“Come,” he said.
Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!” Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”
And when they climbed into the boat, the wind died down. Then those who were in the boat worshiped him, saying, “Truly you are the Son of God.”
Justin’s white blood cell count has been very high since he started maintenance chemotherapy. The concern is a possibility that not enough “bad” cells are being killed off. Depending on his CBCs in the coming weeks, his chemo dosages may be increased.
Of course I’m not thrilled about this because Justin will likely experience more fatigue and nausea. I always tell people he is so up and down. A good example is a birthday party he attended yesterday. He was running around with the other kids, looking completely normal. But then he crashed. We were the first to leave, and Justin didn’t do anything but lay on the couch when we got home.
I don’t like this news. And my mind considers relapse often. But I basically have two choices: I can lose it (and I do sometimes) or I can trust a Sovereign God and stay on the look out for all the ways He comforts and provides and somehow authors good in every evil.
He is a shield around my soul; our only defense and stronghold, though darkness continuously threatens. And He often tips my gaze upward, reminding me where hope is.
But you, Lord, are a shield around me,
my glory, the One who lifts my head high. Psalm 3:3
Today, we served in our community by playing for elderly folks at the Pitman Manor. Yes, I require the boys to take music lessons. It builds character. I think.
They are allowed to pick an instrument after one year of piano instruction. Our youngest son seems to have gotten himself around that rule.
Justin announced a few weeks ago that he would resume drum lessons and perform at the upcoming recital. I somehow ended up accompanying him. Years of not practicing has taken me spiraling down from Beethoven to squinting and clunking through Skip to my Lou.
We are very grateful for what I consider another step in Justin’s recovery process. He voluntarily took on a challenge, worked at it and achieved a goal, despite fatigue. This is another demonstration of Justin’s tenacious, fighting spirit, which I’m fond of even though, quite often, his willfulness is directed at me.
Tonight, as I gave Justin another handful of pills to swallow, he sighed and said indignantly, “Mommy. When will I be done cancer?” (Justin learning how to swallow pills has been a huge relief!)
I told him that he IS “done cancer” and the purpose of the medication is to keep it from coming back. He does not know that he will be in treatment, gulping handfuls of nauseating pills and having chemicals injected into his spine, until March, 2019. He doesn’t know because that is an overwhelmingly long time to a six-year-old. It’s pretty overwhelming at thirty-eight, too.
But I can choose NOT to dwell on it, living in the portion of grace given EACH DAY. And, today, we made songs.
For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. “For as the rain and the snow come down from heaven and do not return there but water the earth, making it bring forth and sprout, giving seed to the sower and bread to the eater, so shall my word be that goes out from my mouth; it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it. Isaiah 55:8-11
Justin shows he can still bear up on this 3ooth day of cancer treatment. Three hundred days.
But time and time again, in His still, quiet grace, God shows me that He is in control. And He is giving me a heart of patience.
Somewhere in between one seemingly chaotic step to another, I have developed a calm forbearance. Or, rather, it has been developed in me.
Be patient, therefore, brothers, until the coming of the Lord. See how the farmer waits for the precious fruit of the earth, being patient about it, until it receives the early and the late rains. You also, be patient. Establish your hearts, for the coming of the Lord is at hand. Do not grumble against one another, brothers, so that you may not be judged; behold, the Judge is standing at the door. As an example of suffering and patience, brothers, take the prophets who spoke in the name of the Lord. Behold, we consider those blessed who remained steadfast. You have heard of the steadfastness of Job, and you have seen the purpose of the Lord, how the Lord is compassionate and merciful. James 5:7-11
Three hundred days and we are not yet one-third of the way through treatment. But Justin’s white and red blood counts are strong and he shows no clear signs of being unhealthy, save some stubborn residual chest congestion and a profusely runny nose. (Our doctor explained that some childhood cancer patients have cold symptoms throughout the entire cold and flu season.)
As we left the clinic today, our nurse explained that we would return in thirty days for a spinal tap and chemo infusion. Justin said, “Mom, maybe sometime we can leave and not come back for thirty YEARS!”
Yes. Someday, we will leave and hope to never go back. That is
But, for now, we wait and bear up under our burden with our hope in Christ.
Justin is hard at work today in our little classroom. We will see how long this lasts.
Justin also had his first session of physical therapy this morning. Recalling our disastrous attempts back in March, I was all silent prayers and cheeseburger rewards. The difference in how Justin is feeling since then was so evident as he willingly and even happily cooperated with the therapist to perform leg strengthening and balancing exercises.
Justin’s therapist asked him how he was feeling after a set of foot stretching exercises. He said, “well it’s not all chaos.” She looked puzzled, but I knew exactly what he meant. He was simply just too sick and too traumatized for physical therapy six months ago.
Although I don’t know the reason, I do know that God is teaching Justin how to persevere.
Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him. James 1:12
After therapy, I complimented Justin.
“It’s all God, mom.”
That’s right, baby, that’s right. Let’s get the cheeseburger.
Day 271. After a nice break, Justin was back in clinic yesterday for IV chemotherapy and a physical therapy evaluation. Although strides have been made in Justins’s overall improved strength since the leukemia diagnosis. Justin will soon start eight weeks of P.T. to address some lingering concerns involving left leg weakness, improper balance and foot pain. Yesterday also marked the beginning of another cycle of many at-home oral chemotherapy medications.
Today I was studying the following Scripture with Nicky for his Bible verse test:
Remember the former things of old: for I am God, and there is none else; I am God, and there is none like me, Declaring the end from the beginning, and from ancient times the things that are not yet done, saying, My counsel shall stand, and I will do all my pleasure: (Isaiah 46:9-10)
When memorizing, you sort of just keep repeating it over and over, right? So here’s Nicky saying over and over, “…for I am God, and there is none else; I am God, and there is none like me…my counsel shall stand, and I will do all my pleasure.”
And I start to think about questions that sometimes nag at me:
Why does God sometimes give partial healing? Why does He sometimes bring complete physical healing? Why does he sometimes bring no physical healing at all?
I don’t think we would ever ascribe our concept of “fair” to any circumstances involving cancer. But, at the same time, who are we to say it is “unfair”?
So what if we stopped thinking in terms of our human concept of “fairness”? I don’t have much toleration for my boys saying, “it’s not fair!” Because who are we to decide what is fair and what is not? And to take it a step further, who are we to define what is “fair” then expect the God of the Universe to adhere to it?
The passage that Nicky is studying goes on to say:
Calling a ravenous bird from the east, the man that executeth my counsel from a far country: yea, I have spoken it, I will also bring it to pass; I have purposed it, I will also do it. (v.11)
I believe God is Sovereign over all the circumstances in our lives and I don’t think of Him as being fair or unfair. I think of God as being JUST. And I think that He gets to define what is just and I do not.
Trying to understand the “whys” is futile. Even much time spent thinking about it is exhausting. Trusting that our circumstances are planned and purposed from the heart and mind of a good and loving God is the only way to set aside desire for “fair” and our mind churning bewilderment. Life will almost certainly feel like it doesn’t make sense to us. But if our hope is in Truth which tells us that God is God and God is good, then we also have peace knowing He is in control.
Back to Justin.
He is cutting pages apart, making a “book” that is smaller than my hand yet holds the most important truths. I staple a “binding” and together we read:
God promised the Savior for sin. God sent Jesus. Jesus died for our sin. Jesus rose again. Jesus is the Savior. Is Jesus your Savior?
grace steps 