Random Thoughts by Justin

Justin: Mom, why do kids like Santa Claus so much? He is weird!

Me: I don’t know. Because they think he brings them presents?

Justin: I mean he’s really a stalker. “He sees you when you’re sleeping; he knows when you’re awake…” That’s stalking, mom!

Me: Why does my eight-year-old know what “stalking” is? I should look into that.

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Cancer Mom Confession and A Family Photo

I see tiny flurries floating by my window and this is what I think. Maybe if put make up and ice skates on and stand really, really still, I could be a fixture inside a snow globe today instead of mom and wife and cancer mom and childhood cancer advocate and staff recruiter for social services.

Maybe not.

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Nicky plays handbells in the GCCS Christmas concert, and Justin receives a signed soccer ball from the GCCS varsity soccer captain. We love you guys. 

Parent Hack

How to have a quick and easy not-really-Chick-Fil-A-at-all-but-kind-of dinner on a budget:

1 bag frozen waffle fries.

1 bag frozen chicken patties.

Hamburger buns. Must be buttered and toasted.

Packets of Chick-Fil-A sauce in the bottom of your purse.

Okay, it won’t blow your mind or anything, but maybe allow a few more bucks for Christmas shopping.

Oh and I DID slice up cucumber for a veg.

And while I’m thinking about being a parent, let me just say without reservation that it’s the hardest job ever. If you happen to disagree, then I need to be the one to inform you that your kids are not normal.

Lots of love to all my parent friends out there in the struggle. Grace be with you.

 

 

Day 1037 cont’d

26A9E8AB-5BE2-45C7-B844-2C8877A1C4D1The second-to-last spinal tap is over! Also, Justin’s physical exam went well. His chemo dosages were cranked up again, but other than that he is still killing it.

85298BE2-D22D-41B9-BDC7-5E9D43FF656BWe had a bout with yucky hives this past week, but it seems to be resolved after antihistamines and many oatmeal baths.

2B32918B-601F-4738-9754-19936B813457Justin woke up from sedation today asking to go to McDonald’s for lunch. Sure, kid, why not. I don’t mind catching French fry vomit. I actually prefer it over spaghetti and meatball vomit.

If all goes according to plan, Justin has 4 treatments left with an end date of March 25, 2019. He said he would like to have a big party with all his friends, featuring lots of good snacks and fun games.

Me too, baby, me too.

The week after an infusion is usually pretty rough if you can still keep us in your prayers. Thank you for continued support.

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Day 1037

We are preparing for a lumbar puncture and chemotherapy infusion into Justin’s spine.

This is the 27th spinal tap and, even though we are sadly used to it, I still vomited Diet Coke while brushing my teeth this morning.

Thank you for continued prayer and support.

One day Jesus said to his disciples, “Let us go over to the other side of the lake.” So they got into a boat and set out. As they sailed, he fell asleep. A squall came down on the lake, so that the boat was being swamped, and they were in great danger. The disciples went and woke him, saying, “Master, Master, we’re going to drown!” 

He got up and rebuked the wind and the raging waters; the storm subsided, and all was calm.“Where is your faith?” he asked his disciples.

In fear and amazement they asked one another, “Who is this? He commands even the winds and the water, and they obey him.” Luke 8:22-25

“The waves and wind still know His name.” 

 

Day 1030 and a Bit About Thanksgiving

So I know that, right now, everyone is more focused on baking and brining than what we are thankful for. I get that. I’ve never cooked an entire Thanksgiving meal in my life and have zero desire to do so.

But I imagine it’s a crucible.

I have been blessed with a brother and sister-in-law, who actually enjoy the cooking process. So, while everyone else is stuck in cart-to-cart traffic at the Shoprite then stirring and mashing and chopping, I get to cut up cheese, throw it on a tray with crackers and call it a day.

Anyway, that leaves time to consider the thankful thing and discuss it with our boys.

I am sharing our “What I’m Thankful For” lists with you. There could be thousands of things but here’s just a few:

Jeff and Katie – our jobs, wonderful friends and community, endless support from my mom and Martin, God’s grace and provision, Justin’s continued healing, health of Nicky and Michael, healing of Jeff’s eyes, Advil, caffeine, fried chicken, Taco Bell, soda. Above all, for the salvation and love of Jesus Christ.

Nicky – Buddy, Gizmo, friends, food and TV.

Michael – Buddy, that he qualifies for the school spelling bee, food and football.

E3951DD4-0C5C-4051-85FD-73BD6844DCC8Justin – Buddy, the Xbox, Cheezits, McDonald’s, Mac and cheese, Friendly’s, milk, meatballs and football. Oh and mommy.

Yup, their answers are very kid-appropriate as they should be (okay some of mine were, too). But, then Justin went into this deep, insightful speech about how he sees that God is working in his life even though he “got cancer.”

Jeff said he’s either going to be a minister or middle linebacker. Maybe both.

Happy Thanksgiving and lots of love from our family to yours. God is truly good to His children. Grace be with you, my friends.

Don’t forget the cranberry sauce.

 

 

Day 1023

Oh, Buddy. Dogs don’t do subtraction.

Doesn’t he look good?!

Justin, I mean. He’s been happy and relatively healthy.

The Lord is near to all who call on Him, to all who call on Him in truth. He fulfills the desire of those who fear Him, he also hears their cry and saves them. Psalm 145:8-9

Day 1019

There’s something about your child being in a holding pattern somewhere between now and eternity. There’s something about forcing your child to be sick for three years so he can live. There’s something about having no tears left which makes you feel cold but you’re not cold you’re just used to it. There’s something about being used to it that feels very wrong. There’s something about knowing down to your guts that you have zero control.

You realize just how bare and inept you really are.

But.

You are no longer gripped by all there is in this world that is unendurably pointless.

Day 1010 and Cancer Mom Confessions

18174F31-E99C-4D53-911E-EBA85AA283ACJustin is “man down” again. We started another round of chemo Tuesday, and it usually  reeks havoc on his body the first week or so. Just as he’s feeling better toward the end of the month, it’s time to start again.

6FB1B54C-AE7B-4316-B3A9-D8E31887A3F9Justin is not feeling well, but sometimes he is able to rally for something he really wants to do. We’ll see if that happens later today for the boys’ soccer games.

Justin cried last night and said he hates cancer because he had to go home while his brothers and friends went trick-or-treating. He made it a little while; but then he was too tired and his neuropathy-affected, chemo-mangled heel cords were in too much pain.

9D0AF6F2-C972-4011-8CDE-B2972CBC66F0I told him to try and focus on the fact that he got to go even for a little while. Very hard for kids. Hard for me as I held him, wiped his tears and offered a chocolate bar.

Aaaand another emotional eater is born.

Jeff is working. I am working. I am also taking care of Justin and managing the boys mostly myself again. I am tired. But it’s a good tired, I guess, because we are doing what needs to be done.

We push forward. Maybe, today, I am crawling.

They had to increase Justin’s chemo dosages for a white blood cell count that is too high and concerning. He is also slightly jaundiced again and will have further testing done this month to determine the cause and health of his liver.

It’s a lot. Yup.

But we are employed with health benefits. Jeff’s eyes are healthy again with a little help from a laser and medications.

And God will carry us through as we push toward a finish line that we hope, above all hope, WILL NOT BE MOVED.

Thank you for continued support and prayer.

I will lift up my eyes to the hills—
From whence comes my help?
My help comes from the Lord,
Who made heaven and earth.

He will not allow your foot to be moved;
He who keeps you will not slumber.
Behold, He who keeps Israel
Shall neither slumber nor sleep.

The Lord is your keeper;
The Lord is your shade at your right hand.
The sun shall not strike you by day,
Nor the moon by night.

The Lord shall preserve you from all evil;
He shall preserve your soul.
The Lord shall preserve your going out and your coming in from this time forth, and even forevermore. Psalm 121

 

 

 

Day 1007

Jeff received a job offer and is over in the city today signing paperwork and all that good stuff.

God provides. We love you, Jesus.

A VERY SPECIAL THANK YOU to everyone who answered the call and helped bridge the gap between employment during this difficult time. I pray for many blessings to you. Grace be with you, my friends.