Unfortunately, I don’t have a picture, but I can share another victory in the process of Justin’s recovery. There was a fund-raising “walk-a-thon” event at school today. Justin was able to complete four laps, running most of the time!

As Justin rounded his third lap, he was red-faced and winded. I told him that it was okay to take a break. He said, “No, mom, I can do it!”

This is a huge step for Justin, considering he could not stand or walk only three and a half months ago. He was exhausted afterward and went right to sleep when we got home. I am enjoying a moment to myself, heating achy muscles and thinking about Justin’s illuminated smile, bright against a gray sky, as he came to the finish.

I can’t help but also think about another race. The race of faith. Grace be with you, my friends.

Therefore we also, since we are surrounded by so great a cloud of witnesses, let us lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. (Hebrews 12:1-2)

 I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing. (2 Timothy 4:7-8)

Spending time with my family on this Mother’s Day has been a joyful respite from a difficult and exhausting week. Justin has not been feeling well, and we received difficult news concerning his next cycle of chemo. The dosages will continue to increase, meaning greater risk of side effects. His protocol also includes a new drug which can cause early heart disease. Justin will have an echocardiogram to make sure his heart is up for the stress. His doctor informed us that he will need regular heart monitoring for the rest of his life.

I am often asked why Justin is still undergoing aggressive chemotherapy when he is already considered to be in remission. I think the best explanation is that remission does not mean that the leukemia is entirely gone, but that his body is responding well to treatment. In past years, oncologists stopped treatment after remission was achieved. In most cases, the cancer quickly returned and frequently became fatal. Remission is very difficult to achieve a second time.

After much research, trial and error, it was determined that children with A.L.L. (acute lymphoblastic leukemia) should receive three years of chemotherapy. With this protocol, there is a ninety-five percent chance of leukemia staying in remission for the duration of their lives.

This is wonderful, hopeful news. But is it a long journey. And one we have only really begun.

In any given day, I swing an ever-moving pendulum of emotions. A moment of feeling so grateful that Justin has a very hopeful treatment prognosis can quickly turn on me. Especially if Justin is struggling through fear, sickness and pain. Or we are sitting with his doctor discussing chemo drugs and their potentially harmful side effects. Suddenly I am worried, scared or overwhelmed. This flip-flopping can occur many times throughout the day, leaving me feeling drained and emotionally worn out.

Maybe you can relate to these feelings, perhaps relative to your own difficult circumstances. What can we do to keep from losing our minds or spiraling deep into depression?

Well, in my humanity, I often turn to tangible comforts, chief of these being my junk food. But I’m simply putting a band-aid on it. A box of Oreos can absolutely make me feel better for a short amount of time. But those creamy, crunchy, chocolatey delights can NOT speak words of Truth, offer living water to my thirsty soul or provide real, sustaining joy.

I must turn and surrender my heart and mind to God, my Father. (Romans 8:15) Jesus, my Redeemer. (Isaiah 44:6) The Holy Spirit, my Guide. (John 14:16-18, 26)

God has given us His Words of Truth so that we may comfort ourselves with His promises. He IS with us. (Isaiah 41:10) He WILL work everything to our good. (Romans 8:28) And He DOES give eternal life to those who place their faith in Him alone. (John 3:16)

We take shelter and find peace when we endeavor to thoroughly permeate our hearts and minds with Truth.

We are slowly making our way through flooded roads to get to clinic for yet another chemo treatment.

 

I’ve been at Justin’s side care taking as well as negotiating meds, behavior and school work for 105 days with precious few breaks in between. I’m beginning to feel as if I’m stranded at sea, my view excruciatingly similar and unchanging in all directions.

As the chemotherapy dosages increase for the purpose of “mopping up” undetectable leukemia hiding in Justin’s body, he has again taken to the couch. Unable to eat very much and fighting a ferocious cold, he doesn’t feel well enough to play or go to school. I try to pass the hours productively and encourage Justin to do the same. But the living room couch has become our boat, and day after day, the endless waves rock us ad nauseam.

So what does one DO when stranded at sea? They fight to survive. They watch for rescue. They pray for deliverance.

Psalm 69:1-3, 13-15

Save me, O God!
For the waters have come up to my neck.
I sink in deep mire,
where there is no foothold;
I have come into deep waters,
and the flood sweeps over me.
I am weary with my crying out;
my throat is parched.
My eyes grow dim
with waiting for my God.

But as for me, my prayer is to you, O Lord.
At an acceptable time, O God,
in the abundance of your steadfast love answer me in your saving faithfulness.
Deliver me
from sinking in the mire;
let me be delivered from my enemies
and from the deep waters.
Let not the flood sweep over me,
or the deep swallow me up,
or the pit close its mouth over me.

I know that my Redeemer lives and I put my hope and faith is His deliverance. So I wait. When our feelings threaten to consume us like a tiny row-boat swallowed by the sea, we must fight them with Truth. In the past 48 hours, two very wise friends have come alongside me with treasured reminders – our feelings can tell us destructive lies (fight with the Words of God!) and Jesus is ever faithful in the mundane. These truths are my life rafts. I am holding on.

Don’t begrudge the difficult days. God is at work in the mess. ~Matt Chandler

Grace be with you, my friends.

 Justin is having a delayed reaction to his last chemo treatment. Today has turned out to be a “hanging on the couch with the barf bucket” kind of day. Also, I’m feeling the effects of pushing myself a little too much this week. My legs are weak and shaky and not wanting to function very well.

Yes, I was discouraged this morning. I felt tired and frustrated and like I just wanted to float up into the sky and ride a cloud to an island with a REALLY white beach and REALLY clear water, allowing the heat to warm my stiff muscles and the sound of the ocean to lull me to sleep.

Well, THAT didn’t happen. Instead, a REALLY amazing friend came to visit. She made TWO Wawa runs for ICEES to hydrate Justin and spent time with me, talking and praying. The haze of melancholy lifted, and I am very encouraged to continue persevering. One day at a time. God knows what we need far better than we. Not that I still wouldn’t mind being teleported to a Caribbean island.

Justin has not been able to eat today, so I am focused on getting liquids into him and staying in touch with his nurse. His doctor informed me that this current dose of chemo is putting  Justin at higher risk for dehydration.

The past couple days feel like one step forward, two steps back. But I am trusting God. I know He knows what He’s doing and I believe in His words of Truth.

Proverbs 16:9 “The heart of man plans his way, but the Lord establishes his steps.”

Of course, I planned to have a “normal” day today WITHOUT weak legs, being the “just-drink-something-police”, twenty-five episodes of The Odd Squad and a barf basin. But that is just not the case. And somehow this is GOOD because God says it is so. As a child of God, we can be confident that our steps are rooted in goodness even if it doesn’t feel that way. Because it is God’s definition of goodness from His perfect point of view, and not our own.

Romans 8:28 “And we know that for those who love God all things work together for good, for those who are called according to his purpose.”

We have a wedding to attend tomorrow night. For about five minutes, I thought my muscles were not diseased and I bought a beautiful pair of pumps (on sale!) And then I remembered that I can’t really tolerate anything besides sneakers and flats. So they are going back. But I wore them around the house for a few minutes the other day. That was fun.

Grace be with you, my friends.

1. Justin is getting prepped for chemo and a spinal procedure today at clinic
2. We get to take a break in the playroom while waiting for sedation. Justin enjoys Wii tennis and I like to chat with other “cancer moms”

Justin told us this morning that when he feels afraid, he “sings worship songs in his mind.” Me too, baby, me too.

“When peace like a river attendeth my way. When sorrows like sea billows roll. Whatever my lot, thou has taught me to say…it is well with my soul.”

This thought is on my mind this morning…May we continue to give grace to others as much as we have received from Christ Jesus. Thank you for your continued support and prayers.

Justin is still struggling with acute separation anxiety. I am working with his teacher at school and the social worker at the clinic to come up with strategies to combat his fears.

Earlier this week, Justin was stating his usual tearful protests about being at school without me. We prayed together and I reminded him that Jesus would be with him. (Joshua 1:9)

Then Justin said something that I think will always stay with me. He said, “I know, mommy, but I want someone with me who I can SEE.”

I get that. I really do. And I can admit having similar feelings earlier in my walk with Jesus. How often is our thinking and faith level that of a five-year-old? Like…”yeah, yeah…I know God gave us the Holy Spirit and His Word in print…but I WANT a God who speaks audibly to me, wears flesh and tells me exactly what to do to achieve personal success. And even…looks me in the eyes, holds my hand and hugs me at the end of a really bad day.”

But God has called us to a deeper faith than this. One that believes without seeing. One that trusts without engaging the physical senses. A calling to live in the pages of the Bible, allowing His Words to wash over us until they pervade our souls and become bigger in us than ourselves.

These are words to one of my favorite songs: “Spirit, lead me where my trust is without borders.” (Oceans, Hillsong)

Lead me WHERE. My friends, I am there. My youngest child has cancer. In remission, yes, but still undergoing very aggressive chemotherapy. Receiving highly toxic drugs into his spinal fluid which flow into his brain and central nervous system. The Spirit has led me to a place where my trust must be “without borders” or I will simply just fall apart. Trust me, I’m not that strong. My stress-eating-junk-food-binging-ten-pound weight gain is proof.

Sometimes we just need to climb the highest, craggiest mountains or trudge through the muddiest swamps to end up in a place where we are willing to lean completely and entirely on Truth. And what IS truth? Truth is the Words of God in the Bible, but it is also a Whom. The Holy Spirit, poured out in love, by the grace of God. (“But when he, the Spirit of truth, comes, he will guide you into all the truth.” John 16:13)

And that leaning produces a faith that does not see with physical eyes but truly SEES with the heart; surrendered, steadily joyful and without borders.

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.  To him be the power for ever and ever. Amen. 1 Peter 5:10-11

Grace be with you, my friends.

 

Clinic was very difficult for me today. For the most part, Justin sailed through. I stumbled.

I glanced down and happened to notice the chemotherapy medication flowing through the tube and into the central line placed in his chest. The area around his access port is scarred and bruised and his skin is raw from continuous adhesive removal.

The sight made me angry and sad. No matter how much I reminded myself that the medication is killing cancer cells and some scars and bruises are really a small price to pay in return for his life, my head still spun and I felt like I was going to throw up.

I felt hot tears burning my eyes. I turned my face from Justin and let them fall.

I don’t want to come across like I’m trying to give the impression that I’m always strong. Sometimes I am scared and weak and angry. Sometimes I snap on people I love, and sometimes I cry like a baby.

But one thing I always do. I turn to Truth and I let myself say, “I can’t.” And in that moment of helpless turning, there is incredible strength and renewed hope found in the arms of Jesus.

I would be lying if I didn’t say huge ketchup-drenched burgers along with some really great laughs also helped. May truth and grace abound in your “I’m losing it” moments, my friends.

Our little fighter decided he needed a proper costume and it totally helped to pump him up for clinic this morning. Of course, the true source of Justin’s courage came from our time of prayer in the car on the way there.

We’ve been talking quite a bit about the kind of courage God gives, our favorite example being David and Goliath. It is true that young David brought down a mighty giant with a simple sling shot, but I always emphasize to my boys that God had complete control over that stone.

So what exactly is courage? Is it the willingness to confront difficult circumstances because of belief in our own abilities? Well, to some it is. But to me, it is the choice to believe that God has control over the scalpel, the needle, the steering wheel. The same perfect control He had over David’s stone.

And true courage is birthed from faith that God works every outcome for our ultimate good. (Romans 8:28) If we truly believe in God’s loving Providence over all things, what is there left to fear?

“David said moreover, The LORD that delivered me out of the paw of the lion, and out of the paw of the bear, he will deliver me out of the hand of the Philistine. And Saul said unto David, Go, and the LORD be with thee.” 1 Samuel 17:47

This is NOT just a cool story for Sunday school kids. David demonstrates incredible faith in the sovereignty of God, manifested by some really gutsy courage. And he rightly gives God the glory for the victorious outcome. (1 Samuel 17)

Praying for the grace to be more like David and less like a tired, frazzled mom hiding in the laundry room eating leftover Easter candy.

Grace be with you, my friends.

 

 

Justin asleep on my lap today. You can see the scar on his chest from where the central line was placed. It is a bittersweet reminder of the extreme stress we endured while staying in the hospital combined with the memory of God’s constant presence and, incredibly, sustaining joy.

Justin’s treatment is a three year journey. I’m not sure if I’ve mentioned that yet. In that context, day 84 doesn’t feel like we’ve made much progress. But we continue to take one day at a time, one cycle of chemo at a time. And I try to focus on how far we’ve come instead of the long road ahead.

Justin is still struggling with anxiety. I am trying to move him toward attending school for even just a short time by himself. But the mere mention of it sends him into a tearful panic.

Yet we will continue to work toward autonomy and celebrate the small victories. And step forward in grace. Although I do grow weary of the tantrums, clinging and my helplessness to absorb his pain, both physical and emotional, I am very grateful that I am able to be with him each day.

I am the one who wipes his tears, holds him during chemo and gets to see him take his first gym class in months. And when I consider that this is exactly where God, in His sovereignty has placed me, the more mundane daily stuff takes on more purpose and meaning.

3 To every thing there is a season, and a time to every purpose under the heaven:

2 A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;

3 A time to kill, and a time to heal; a time to break down, and a time to build up;

4 A time to weep, and a time to laugh; a time to mourn, and a time to dance;

5 A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;

6 A time to get, and a time to lose; a time to keep, and a time to cast away;

7 A time to rend, and a time to sew; a time to keep silence, and a time to speak;

8 A time to love, and a time to hate; a time of war, and a time of peace. Ecclesiastes 3:1-8

Please continue to pray for healing in Justin’s little heart and mind as well as wisdom to parent during this difficult time. And grace to hang on until the days become “a time to heal.”

Grace be with you, my friends.