I am happy to relay that reducing Justin’s dose of Vincristine has made a significant difference. In fact, he hasn’t complained of foot or leg pain at all since the start of this chemotherapy cycle. His next CBC will show if he can continue on the lower dose, and we are praying for that outcome.

This week, Justin, as well as Nicky and Michael, have enjoyed being part of our New Life Kids summer Bible club and selling water ice after church to raise money for our missionaries in South Sudan. Justin volunteered to read in front of the class, kept up with the other kids in a game of tag, and scooped water ice at our stand.

 

A course of steroids has left Justin tired, moody and craving all kinds of meat. And, of course, nausea is an ongoing problem. But, with the absence of pain, especially in the middle of the night, Justin and I have both been given some relief.

God continues to carry us, but not because of who we are. Not because Jeff and I lead a Bible club or raise money for missionaries. Because of WHOM GOD is, we are lifted up, sustained and restored.

Your righteousness, God, reaches to the heavens, you who have done great things. Who is like you, God?
Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up. You will increase my honor and comfort me once more. Psalm 72:19-21

 

Today was spent in clinic for a check up and chemo infusion. Justin requested McDonald’s breakfast on the way. I pictured myself buttering hot cakes on the freeway.

Sure, I can do that. I AM MOM.

Hot compresses and epsom salts failed to clear an infection on Justin’s foot. Another course of antibiotics was added to this cycle.

Dosages of Vincristine are sometimes reduced in cases of severe CIPN (chemo-induced peripheral neuropathy). I told Justin’s doctor that the time has come. He agreed. I am hoping his foot pain is somewhat eased.

Justin’s veins failed to cooperate for the first IV placement. He took two needles today, one in each hand. There was shaking and sweating and tears, but we made it through.

Justin surveyed the damage. “Now I have a mark on both hands. Just like Jesus.”

Sobering. Precious.

Tonight it is steroids and fatigue and nausea and spaghetti with meatballs. And here we go again.

A very special thank you to a friend who gave up some of his summer vacation time to come along today. Benjamin was gentle and funny and supportive and exactly whom Justin needed. God knows.

A friend is loyal at all times and a brother is born to help in time of need. Proverbs 17:17 (NLT) 

 

 

Justin moved from crime scene level bleeding to a cold, mouth sores and an infected toe. Chemotherapy. A necessary evil.

“Mom I just wish I could feel regular again. Like normal and not sick to my stomach everyday.”

“You will, baby, you will.”

“Yeah but it’s so long, mommy. I have a year left, which is 365 days, then a bunch of months, which is a lot MORE days.”

I pull him close. There’s nothing I can say to make this all seem less cruel to a six-year-old.

But this is what I think: just stay ALIVE for me.

On a more positive note, Michael is enjoying parkour camp. (Parkour- the sport of moving along a route, typically in a city, trying to get around or through various obstacles in the quickest and most efficient manner possible, as by jumping, climbing, or running: his amazing parkour skills. Origin of parkour. French.)

He logged in many hours on the monkey bars in preparation for this week. This is all part of Michael’s intensive training to someday appear on American Ninja Warrior.

Today he met one of his Ninja “heroes” who competed in the women’s finals in Las Vegas. If she works out just a little harder, her arms MIGHT someday look as toned as mine. I mean, she can try.

She was super awesome. Michael was all smiles.

This has been good for relieving Michael’s anxiety, and, for that, I am grateful. There are going to be hard times. This is reality. And, yes, when things are difficult, they CAN actually get worse.

But.

There is always grace.

 

The bleeding finally stopped and Justin’s red and white blood counts are stable. He celebrated with a cheese steak.

Of course, we’ll need to keep an eye on this if the bleeding should start again because blood loss is a tricky thing for a child on chemotherapy. But we are able to monitor him from the comfort of our own home.

God has answered our prayers concerning all the possibilities that tend to run through the mind when a leukemia patient doesn’t stop bleeding. Yes, He does allow us to go through deep waters.

But never alone.

When your child is in treatment for cancer, your life is made up of many “todays” even if they are responding well overall. There can and will be bumps in the road. As adults, Jeff and I can process this and manage stress pretty well. (Aside from my personal Oreo crises, that is.)

Not that I never experience fear, but it is Justin and his brothers who really struggle with it. The unknowns. The interruptions. The chaos. Please continue to hold the three of them in prayer.

A very special thank you to our friends who spent the day with Nicky and Michael. Also, to my mom for tackling our very unappealing, sand-soaked beach laundry.

I didn’t love today.

But.

This is the day that the Lord has made.

This is it. This is the day we got. So I will find joy in my hope in Jesus, believing there will be better days. I will also scrub blood from a favorite Ninja turtles t-shirt and “the blanket” which we are never without. Grace be with you, my friends.

Blood flowed from Justin’s nose on and off throughout the night. For leukemia patients, this can be a sign of needing a platelet transfusion.

There is terror over the needle that will be stuck into Justin’s hand shortly. I managed to keep him calm for now. But they are calling in a child life specialist. I think his screaming protests were heard down in the graves.

Please hold Justin in prayer from the store, pool, car, park, kitchen, office, laundry room, wherever you are.

Though an army encamp against me, my heart shall not fear; though war rise against me, yet I will be confident. Psalm 27:3 

Michael is still having episodes of extreme anxiety along with problematic physical systems, otherwise known as an anxiety attack. But I’m experienced enough as a mom to know that we don’t use that word with a second-grader. It sounds a little too ominous.

A cognitive behavioral therapist visits once a week. She plays games with him. What looks like a regular board game, actually gets Michael to interact and talk about his feelings.

Question on game card: What is the worst thing that can happen to a person?

Michael: (without missing a beat) The worst possible thing EVER is cancer. Yeah, DEFINITELY.

And there it is.

Michael and Nicky both finished a week-long soccer camp today. Michael was hoping for a medal because he won last year. Well, we can’t win them all, honey.

It was Nicky who brought home a medal this year, his team winning the three-on-three tournament. This meant a lot to him because he does not have much confidence with team sports. He was very surprised and pleased. 

“Guess I might keep playing soccer, mom.”

This meant a lot to ME because I prayed he would have a positive experience in an area I basically made him take part in. Yes, I believe God cares about the little details and grants us desires which He deems good.

My day included steroid tantrums and anxiety attacks. But there was also a friend showing up at just the right time and Nicky’s success.

Rising to fall and falling to rise.

All wisdom comes from the Lord,
and so do common sense and understanding. God gives helpful advice to everyone who obeys him
and protects all of those who live as they should. God sees that justice is done, and he watches over everyone who is faithful to him. Proverbs 2:6-8

Today there was a  steroid craving in the form of a T-bone for breakfast, Michael nailing down a Principal’s List award (straight As for the year) and Nicky enjoying his fifth grade pool party, hosted at our home.

Blessed are those whose strength is in you, whose hearts are set on pilgrimage. As they pass through the Valley of Baka, they make it a place of springs; the autumn rains also cover it with pools. They go from strength to strength, till each appears before God in Zion. Psalm 84:5-7

Mommy is talking again. I think she is trying to make me laugh, but I don’t think anything is very funny. We are in the car going to clinic and I know what this MEANS.

I wasn’t allowed to have any breakfast. My stomach is making funny sounds and it hurts.

Mommy asks me if I want to play a game while we wait for my turn. I grab Connect Four, one of my favorites. For a little while, I forget that I am hungry and scared.

I sit still on the bed with mommy like I am told, but I want to rip the rubber band off my arm and run away. Miss Karen rubs alcohol on my hand. I hate that smell. The needle feels like a giant knife. Mommy is showing me pictures of the beach, but I don’t care because my hand hurts so bad and I see blood coming out. I really don’t want to cry, but I can’t help it.

I am confused again. Mommy always says the medicine is making me better, but the needle hurts so bad. It doesn’t make sense to me. Why does mommy let them give me needles? It hurts and I am mad. I am mad at mommy.

“I hate you!” I say. Mommy doesn’t say anything. I try again. “You’re an idiot!” Mommy just asks if I want to play a game. This makes me more mad. I want her to be upset because I am upset. And now I don’t even remember why I’m mad but I know for sure that I am REALLY hungry.

I kick mommy in the face. I see blood on her lip. Now there is a new feeling. I’m not sure what it is, but I feel very bad. Mommy just gets a tissue and doesn’t say anything.

Now I am laying on my side. My nurse and doctor are there and another nurse. Mommy is right next to me, telling jokes and rubbing my head. They put some medicine in the tube on my hand. Everything starts to look different and I feel really tired. But I also feel like laughing a lot. I feel coldness, then a big pinch and burning sting in my back.

I tell mommy that I like how she always sits right next to me, at clinic, and puts her face near mine. Then I remember that I was mean to her, and I don’t really understand why. But I know that I trust her and I’m not mad anymore.

“I’m sorry I kicked you mommy. I’m sorry. I love you, mommy.”

“I know, baby. I know. I know you didn’t mean it. It’s okay. I love you and I’m so proud of you.”

Everything feels better. They are pushing on my back but it doesn’t hurt anymore. Mommy is smiling at me. I am so tired. I close my eyes and don’t remember anymore.

This is yesterday’s experience from the perspective of a six-year-old. Justin had a blood draw, chemo infusion, and lumbar puncture to aspirate spinal fluid, while also injecting chemotherapy into his spine for the purpose of attacking hidden cancer cells in the central nervous system.

People ask me how it is that I stay strong. Because I have to. Because I don’t have a choice. Because Justin is terrified and, if I am, too, then who will he lean on?

But, at the end of the day, Justin’s eyes closed and mind surrendered to dreams, I get to be the one who is terrified. And it is Jesus who silently and patiently endures with me. He doesn’t fix everything, but He is there. He is next to me and His face is near mine and I know I am loved.

The needle hurts but the medicine is good. Childhood Cancer hurts, but I know God is working it for our GOOD (Romans 8:28). Grace be with you, my friends.

Dishes. Laundry. Errands. A thousand other things to do.

Nope. Not today.

I have a sick little boy who loves the beach.

“Let’s dig, mom.”

“Okay. ” A small hole forms as we scrape away sand with jagged remains of sea shells. “Maybe we’ll find some treasure.”

“I’m already looking at the treasure, mom.”

“Oh yeah? Where?” I’m doing the half-listening-answer-when-I’m-supposed-to mom thing.

“You are my treasure, mommy.”

Sometimes for a day or an hour or a minute, Glory breaks in and shines a little bit of Himself right on us. And I see a kind of beauty that sends chills all the way to my split ends.

The mighty One, God the LORD, speaks and summons the earth from the rising of the sun to its setting. Out of Zion, the perfection of beauty, God shines forth. Psalm 50:1-2