Justin and his support crew at clinic. No transfusion today! Justin’s white blood cell count is up from 10 to 220, which is still considered neutropenic (at high risk for fever and infection) but his body is starting to recover from this past month’s intense cycle of chemotherapy.

Considering that his counts continue to rise, Justin will begin a new cycle of chemo a week from today. Barring a fever, we have an entire week’s rest from the cold, sterile clinic and its assortment of tortures.

True faith is not believing we will get what we want. But a trust in God’s sovereign will and GOOD purpose even when circumstances and outcomes are not as we had hoped.

As we continue to ride a rollercoaster of ups and downs, may we stand firmly in true faith whether our hearts soar with gladness or break in sorrow. And oh that we might not think we have found treasure in this world or invest our hearts in it’s common offerings (Matthew 6:19-21), but in the incomparable riches of His grace and glory in the ages to come. 

 But because of his great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in transgressions—it is by grace you have been saved. And God raised us up with Christ and seated us with him in the heavenly realms in Christ Jesus, in order that in the coming ages he might show the incomparable riches of his grace, expressed in his kindness to us in Christ Jesus. Ephesians 2:4-7

Thank you for continued prayer and support.

Justin received a second blood transfusion yesterday. His white blood count is 10. A normal count is in the thousands. He has no ability to fight infection right now. Our nurse told us to pack a bag for the hospital. But I think I’ll just wait and see what God says.

This picture was taken yesterday at clinic after many hours of waiting for blood to be delivered and transfused. Still strong in spirit, Justin was showing his “muscles” and goofing around.

He said, “Mommy, just cause I cry a little bit when I get my port, [central line accessed with a butterfly needle in his chest] I still don’t let it keep me down.”

That’s right, baby, that’s right.

Day 171. Justin is bruised and tired and neutropenic, meaning his white blood cell count is very low and he’s at high risk for infection. He received a platelet transfusion Wednesday, and we are driving to clinic now for a CBC to determine if he needs another blood transfusion.

Car ride. Fighting. It’s like three dogs barking in surround sound.

Context. It’s so hot outside you could fry an egg on my driveway.

Fried egg. That’s me. Burnout is ebbing out my flow and I just don’t want to play the glass-half-full game.

For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. 1 Corinthians 13:12

Clinic. I just walked past a partially open curtain looking for an empty bay. My eye caught a quick glance of a young girl having an IV placed. Her mother held her tightly, pulling her daughter’s face against her own. I know that particular embrace. The girl’s shoulders shook but she didn’t make a sound.

I’m getting that tight throat sore lumpy feeling again. Come, Lord Jesus. And bring Your face to mine. Grace be with you, my friends.

Justin is experiencing bruising that has not occurred by injury. This is a sign of low platelets and he will need another blood transfusion tomorrow morning.

It’s funny how the little things can get me so undone. After everything Justin has been through, seeing his badly bruised hip as he undressed for the bathtub, sent me running out the back door trying to hold in tears and calling oncology.

Now I am making arrangements for a trip to clinic. Michael just sailed down the stairs, threw his arms around me, smacking his wet, shampood head against my cheek, and reminded me “it’s time for family devotions. And it’s my turn to read.”

God sees the hard and harrowing moments and moves His faithful hand over every second we come a little or a lot undone. God sees us. He sees me on the back step talking to a nurse and He sees Justin’s bruised body. He sees spaghetti sauce encrusted dishes piled in the sink. He sees our recurring nightmare of medication and pain and trips to clinic. Except it’s real.

He sees.

As the blood from an unknown donor slowly drips into the central line in Justin’s chest, we pass the hours with snacks, video games and silent prayers. Although I am extremely grateful for donated blood cells which are helping to save his life, I am asking God to protect Justin’s body from any negative side affects.

As I watch blood flow down from the IV bag, I can’t help but think of another blood sacrifice made. Blood that flowed down from our perfect substitute, not for the purpose of saving our earthly bodies. But to save our souls.

An old hymn keeps playing in my mind:

There is a fountain filled with blood
drawn from Emmanuel’s veins;
and sinners plunged beneath that flood
lose all their guilty stains.
Lose all their guilty stains,
lose all their guilty stains;
and sinners plunged beneath that flood
lose all their guilty stains.

The dying thief rejoiced to see
that fountain in his day;
and there may I, though vile as he,
wash all my sins away.
Wash all my sins away,
wash all my sins away;
and there may I, though vile as he,
wash all my sins away.

E’er since, by faith, I saw the stream thy flowing wounds supply,
redeeming love has been my theme,
and shall be till I die.
And shall be till I die,
and shall be till I die;
redeeming love has been my theme,
and shall be till I die.

No matter what happens today or the rest of my life, my soul is secured by my faith in the blood-bought redemption of Jesus. And, though he is very young, I have seen evidence of this same faith in Justin’s little life. This is my constant prayer for him, even more so than healthy blood cells. And for my other boys as well.

For, in eternity with Jesus, there is no cancer. No pain, no fear, no death. Because God is there, only GOOD abounds. Grace be with you, my friends.

1. Jeff shaved his head again to support Justin.

2. Michael’s baseball team (Justin played in a few games as a guest) won the championship! Their coach came to our home and presented the trophy to the boys. To keep.

I like to share the joyful, touching moments as well as the difficult. Thank you for continued prayer and support. Grace be with you, my friends.

1. Justin and his good-looking support crew
2. A little hallway soccer always helps
3. Encouraging (but sterile) words for Justin during his port access

Justin will continue to receive shots this week from our home care nurse. His CBC  showed that his counts are dropping, and his doctor projects that he will need a blood transfusion by the end of this week. So it’s back to clinic Friday morning.

We are trusting God, believing His hand guides our every step.

The Lord makes firm the steps
of the one who delights in him;
though he may stumble, he will not fall,
for the Lord upholds him with his hand. Psalm 37:23-24

I am attempting, for the umpteenth time, healthier eating habits. I haven’t had cookies, ice cream or cake in over a week. Pray. For. Me.

Grace be with you, my friends.

My child is bald and there is chemo in my fridge. Right in the cheese drawer.

This is real. I kept hoping I was stuck in a bad dream and would wake up to “normal” any minute.

Somewhere in between assisting our home care nurse with Justin’s shot and getting groceries today, my eye caught a scripture that I have printed and framed on my desk. Matthew 11:28-30:

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.

So all afternoon this phrase has resonated in my heart. Come to me. Come to me. I don’t have to DO anything or pull myself together or even wash my hair. I just have to believe and trust Jesus enough to go to Him with my problems, my doubts, my pain, my fear and my weariness.

Justin comes to me when he sick or scared or tired. I snapped this picture right before he fell asleep on my lap. I can’t change the situation for him. I can’t take away his cancer. But I can offer him love and comfort. I can offer him rest from his fears with soothing words and open arms.

Jesus DOES have the power to change our difficult circumstances. But sometimes He just doesn’t. But not because he doesn’t feel like helping us. He died on the cross for us for crying out loud! Of course Jesus wants to help us. So if He chooses not to change circumstances to our liking and relief, I must believe that it is for a very GOOD reason. (Romans 8:28)

However, just like I am always there for Justin when he comes to me for consolation,  Jesus is always there for us. He resides in scripture and in our hearts (if we are His child). And He can be easily found by reading His word and calling to Him in prayer.

Come with me to Jesus. My body is weary, my mind is distraught, but my soul is at rest. Grace be with you, my friends.

Justin came through a long day of procedures and chemo yesterday feeling relatively well considering all the different medications and needles he was given. And our prayers were answered concerning health insurance. Both the medication and home nurse were approved.

In fact, just about an hour ago, the home care nurse quickly administered the shot as I held Justin’s arms down. I noticed that he made a very speedy exit. Justin was not happy, and let both the nurse and myself know it. Loudly. I was glad the windows were closed.

Justin will receive two more shots this week. And then another set of four next week.

I’m feeling tired and emotionally drained. I keep thinking of an excerpt of lyrics to one of my favorite songs. Maybe because a sweet friend sent them to me the other day. Lord, I need you by Matt Maher:

Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You

Teach my song to rise to You
When temptation comes my way
And when I cannot stand I’ll fall on You
Jesus, You’re my hope and stay

I am Justin’s “fall person”. I am there when he is sick, sad, hungry, tired, anxious, getting medication, being examined, getting his port accessed and now getting shots. I am always there.

Sometimes holding up the weight of Justin’s illness as well as my own gets to be an extremely heavy load. One that I just cannot stand up and carry. This is when my “leaning on Jesus” becomes “falling on Him.” And when I cannot stand, I’ll fall on you. 

He sustains. Without fail.

Thank you for faithfully continuing to pray for us. Grace be with you, my friends.

Justin has lost most of his thick, dark hair. But he has not lost his fighting spirit nor his faith in God, albeit a very childlike, five-year-old faith. Justin frequently tells me that he “sings worship songs in his mind” when he is afraid and then he “feels calmed down.”

He will need those songs particularly during tomorrow’s visit to clinic as well as the rest of this week. Tomorrow, Justin is scheduled for a spinal tap, chemo infusion, and a new drug by way of a shot. He will continue to get the same shot for five consecutive days.

However, our insurance company has denied coverage of this medication as well as covering a routine home-bound nurse to administer the shots. Naturally, we have appealed this denial, and we should know more information on this tomorrow.

Please pray for a relatively smooth procedure and infusion as well as compliance from our insurance company. We thank you for faithfully following our journey and interceding on our behalf to

“…him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.” (Ephesians 3:20-21)

We have known loss on this path carved out with high, craggy peaks and deep, shadowy valleys. Hair surely regrows, but Justin’s time lost “just being a kid” cannot be restored. We trust that there is a far greater purpose at work and keep our eyes fixed on Jesus. As we spend another day in clinic enduring needles and pain and fear and toxic drugs, I MUST focus on what is NOT lost, nor ever can be.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 2 Corinthians 4:16-18

Grace be with you, my friends.