Our morning was spent in the hospital with Justin and a lip infection, which his body hasn’t been able to fight off. (Mouth sores are very unsightly, painful and inconvenient side effects of chemotherapy.) Last night it was DEFCON 1 nuclear tantrums, ice packs and, finally, leftover painkillers from his surgery. As of today, I’m eternally grateful for antibiotics and magic mouthwash.   

A quick few bites of lunch for me then on to whisking Nicky to his orthodontist appointment. Today was the day. Two hours and an obscene deposit later, Nicky is sporting braces with orange rubber bands. The smile has since disappeared. After countless smoothies, I have two cranky broken-mouthed kids begging for Tylenol.

I look on the bright side. Maybe they’ll stop talking for few days. 

Well we’re pretty sure Nicky isn’t “dying, Mom!” but, yes, mouth pain…Is. The. Worst. Is it bedtime yet? Almost. And tomorrow is a new day.

This coming week will be filled with writing a Mother’s Day article for St. Baldricks, celebrating Michael’s 8th birthday and packing for Justin’s wish trip. Look for trip pictures early next week. Jet-setting for sunny Florida early Tuesday morning. Joy!

Thank you for continued support, prayer and encouraging comments. We SO need them. Just caught Justin trying to set up a Facebook account on Jeff’s Kindle. What. Grace be with you, my friends.

When your child steps into the lab for a blood draw, you have two choices. Stay, which results in helping to hold them down for what they view as torture. Or leave the room and let the nurses handle it.

I never leave.

After the struggle, Justin hit me several times in anger over the betrayal. And I just let him.

You can judge me for that. And people do. Or we could take a minute to try and understand what it’s all really like.

Justin has been needle-stabbed literally hundreds of times. A six-year-old doesn’t grasp that pain can be for a good cause.

The child psychologist and social worker tell you that all the rules need to be the same. Achieving normalcy is the best thing for the childhood cancer patient.

Yeah, right.

There is nothing normal going on in his body, his mind, his emotions. Nothing normal at all. So I could pretend, and unfairly expect him to live up to standards which he can’t possibly.

Or I can meet him where he is.

A child with a learning disability needs to be accommodated. A child with a chronic illness does, too.

If Justin hits his brother over a toy, he is disciplined. If he hits me while practically blind with pain and rage, I ignore it.

Balance. I think so anyway.

Still muddling through the parenting a child with cancer thing. It’s a murky, slimy swamp. And I only hope in wisdom from God not to sink in it.

Justin’s blood counts are stable, and there’s a plan in place to hopefully manage recent side effects. Leaving for Give Kids the World, a Make-A-Wish Foundation resort in Kissimmee, Florida, in twelve days.

Yes, we have a countdown. Here’s a happier picture of Justin opening the wish packet. Grace be with you, my friends.

 

I don’t have “Easter pictures” this year.  The dressed up polished up pastel colored kind.

Justin was all chemo side effects this morning. Stomach pain, foot pain, mouth sores.

I snapped this one instead. It’s not beautiful in the matching outfits white shoes sunshiny kind of way.

But there is beauty. And it’s all in what you cannot see. It’s the mother who picked herself up. Again. It’s the husband who prayed for her. It’s the person who knew the right words to say. It’s the nail-scarred hands that are surely there or it would all come apart.

To all of you loves who also don’t have a picture perfect pastel picture today. Because of illness. Because of death. Because of broken relationships. Because of reality.

Your strength, your character, your perseverance. That is real. That is beautiful. Let it be shown. Grace be with you, my friends.

The best and most beautiful things in the world cannot be seen or even touched – they must be felt with the heart. ~Helen Keller 

Spaghetti and meatballs on the stove at 10am. Chemo craving. This is usually funny. But today it’s not. I don’t know why exactly.

Maybe because the sun is shining and birds are singing spring outside my kitchen window but I just want to shout at them to stuff their cheerfulness and bring back a cold gray day that makes me feel like I’m not missing anything because my six-year-old is in pain and lethargic on the couch.

This is feeling all so selfish now that I wrote it out.

And then Justin comes running out to the kitchen. He smiles happily at his plate.

Suddenly there’s no place I’d rather be. I come to my senses and remember there is so much gratefulness. Sometimes squeezed out of place by plain old humanity. But always there.

Normalcy is overrated anyway.

I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength. Philippians 4:12-13

The secret is hope in Jesus. Grace be with you, my friends.

Five days into the new cycle. Nausea, fatigue, foot pain, generally drained. Justin’s white blood cell counts, which were once too high, are now too low.

He made it through one and a half games of baseball. Opening day. Justin hit hard and ran his best. He also helped to entertain the elderly at Piman Manor. The boys occasionally take on this service project. Yes, I make them do it. Justin drummed his way through Joyful, Joyful We Adore Thee, along with Nicky on guitar and Michael the piano.

I know that several times throughout the weekend, Justin felt like giving up and going to bed. He said as much. But he just didn’t. I supported. I encouraged. I pushed.

Cancer does not get to take baseball and drums and normalcy. Or leave us lying under a relentless pressing down and holding you there kind of weight. This is childhood cancer. But, in measures of unexplainable grace, God lifts us beyond the gnarled snatch of defeat.

“Mommy, that needle felt like a thousand forks stabbing my hand.” Can’t make it stop. 

“Mom, I’m afraid to get cancer like Justin. I’m afraid to get the kind of cancer that makes you die. I don’t want to die at seven-years-old.” Despair hovers. 

The beating persists for now. But we still rise. Justin even handled the cheek-pinching with dignity (pictured below). Grace be with you, my friends.

Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written: “For your sake we face death all day long;
we are considered as sheep to be slaughtered.” No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:35-39

There were tears over not being able to find a vein in his hand. Justin’s fell on my lap. Mine were held back. For later.

But after that it was fun and laughs. Justin and I shared snacks and squared off on Scrabble Junior.

A very special thank you to Kathy for chicken nuggets, funny kitty videos and helping us kill time with a cutthroat Wii tournament.

Justin’s nurse is always ready with a smile. She hangs bag after bag of chemo and somehow makes you feel like it’s all very normal. It’s all okay.

In spare moments, I help to advocate for childhood cancer awareness and research funding. Research matters. There is a cure for acute lymphoblastic leukemia because a doctor at St. Jude’s (in the 1960’s and 70’s) refused to give up on treating what used to be the number one child killer. His research was funded and his protocol can cure.

There are currently many childhood cancers with very little to no survival rate. There is evidence that new immunotherapy trials are beginning to make a life-saving difference.

More research is needed. More funding is needed. Excerpts from this blog were published on the website of Children With Cancer UK. Foundations like this one exist to put a spotlight on the aforementioned needs and give hope to other childhood cancer families. Hoping I have succeeded to do this in some small way, by God’s grace. I really like how those Brits speak and call me mum, too.

http://www.childrenwithcancer.org.uk/Blog/justin

I was asked by a different foundation to write a piece on being a cancer mom. For Mother’s Day. Sure. Anything that helps these kids and families. Grace be with you, my friends.

Our family was honored today by St. Baldricks, the top fundraising organization for pediatric cancer research. An oncologist, who is conducting a research study at CHOP, which Justin is actually part of, spoke on how St. Baldricks has entirely funded research for immunotherapy, which is a relatively new treatment that is savings lives.

Jeff shared our personal journey, thus far, with childhood cancer. Yes, he is going bald today but it’s for an important cause! Please give if you can. Well-funded pediatric cancer research, ordained by God, is saving Justin’s life! Children’s foundations are important because the American Cancer Society and the federal government give most allotted and donated funds to adult cancer research.

Be part of saving children. https://www.stbaldricks.org/teams/justinisthetoughestkidiknow

Today is Nicky’s birthday. We celebrated with homemade chicken pot pie, his fave, and cake with ice cream, of course.

He asked for several books, including one on falconry and a Bible with his name on it. Super happy about that.

Okay. A book on falconry. No problem.

He skimmed through it after opening the gift. “So, mom, when can I get my first falcon?” As if this is the most natural question in the world. And like a pet falcon makes perfect sense for an eleven-year-old. Our backyard: playhouse, trampoline.

Giant bird of prey.

But this is my oldest son. For Kindergarten costume day, he went as a paleontologist. Making that costume threw me a bit. Twenty-two Spider-Mans and Disney princesses. And one ancient fossil scientist.

Happy Birthday, my Nicky. I’m very proud of everything you are. Keep being “fearfully and wonderfully made” YOU (Psalm 139:14). And I love you infinity.

Often I am discouraged. Often I am tired. Often my mind is jammed full of too many things. And, very often, my foot seems permanently lodged in mouth. Being a mom is hard. Being a mom and a cancer mom is really hard.

More often, though, it is subtle, whispery reminders that Jesus still walks IN THIS THING with me. Like when I am running on Cherry Coke, dragging myself around in a baggy sweatshirt, forced smiles and wet hair; knowing Jeff is flying overseas in a few hours, the house is a mess, I have no groceries and no motivation to go get them. Then God sends a very together-looking lady with AMAZING hair to tell me that MY words have been an encouragement. She is speaking about this girl who writes a blog and, in that moment, I don’t even know who this could be.

ME. The binge-eating, exhausted one who occasionally pulls jeans from the dirty laundry basket and yells weird things like “shut your teeth.”

And then I remember that God is in the business of cracked vessels (2 Corinthians 4:7) and I am oh-SO-cracky. But God is sovereign. What a huge relief that is. Moreover, He places bearers of encouragement in my path when it is needed most. Cards and messages. Kind words wearing great hair. And a lovely lobster-preparing-delivering couple, who made time for a little thing like Justin’s craving (even though it can’t really be called that since he’s never had lobster in his life.)

I’m sure I’ve lost some of you along the way. Of course. Life is busy and crazy. But, to the faithful, I am so grateful for your very necessary part in the way He holds me up. Thank you for continuing to journey with us.

Nicky sees me tearing up across the room and comes in for a hug. He pulls a wad of pink from his mouth and says, “want some gum?” I laugh. This is totally something I would do. Grace be with you, my friends.

But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. 2 Corinthians 4:7-9

It’s that time. Baseball season. Practice starts. New gear. Excitement. Justin is officially on the team this year, chemo and neuropathy and all. He says, “Mom, I’m the slowest runner on the team because my legs don’t work good.”

This is difficult. Because this is Justin. The athlete. The fastest runner on his pee-wee soccer team. The two-year-old who could hit a plastic ball way across the yard with his Little Tykes tee-ball set. The kid who wrestles his bigger brothers to the ground. The kid who never gives in, which you find completely admirable and completely annoying all at the same time.

To him, this is unacceptable. I get it.

“Well, then, you’ll just have to hit the hardest.” He likes this idea.

Mental note. Make time to pitch to him in the backyard this weekend.

Still. Baseball or not, Justin is here with us. Today, he is still here. And I make it a habit not to look too far beyond. Grace be with you, my friends.