Day 875

Clinic went really well today. Better than it’s ever been, I would say. I attribute this to prayer and the requested Ativan (for Justin, not me, although I’m thinking I wouldn’t turn it down) to help cope with his now severe needle anxiety.

Justin is not feeling too great after the spinal and chemo, but Buddy is there for him.

Justin’s chemotherapy doses were again increased due to a very high white blood cell count. But we are still on track to end treatment on March 25, 2019.

Thank you for messages of encouragement and continued support!

 

 

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Day 874

Tomorrow we are back in clinic for sedation, spinal tap and chemo infusion.

Don’t be annoyed with your kids if they fail a math test or blow out the knees of their pants for the tenth time.

I’d be thrilled if Justin could fail a test and rip his pants. Because that would mean he is at school being a kid, instead of having poison injected into his central nervous system.

There will be pain and screaming and sickness tomorrow. Yet, no matter how much I will its delay, I know tomorrow will come.

I get weary of it all.

80C88E8E-8D18-4890-B562-911CF554C207Most of the time I feel like the last scene of Rocky 2. Apollo and Rocky are both beaten and bloodied, down on the mat. Whoever gets up first wins. It’s a painful ten seconds, in slow motion, of them both struggling to stand, then falling, then struggling to stand again.

But what can I do? Freak out? Done that. Eat my emotions? Daily. Throw a tantrum? Been there. Scream and yell? You betcha.

I can tell you this. None of it makes any difference.

What keeps me from really going over the edge is faith. Faith that God is real, God is here, God is sovereign and God is Love.

I don’t know what God is doing, and I don’t like it. But I trust Him.

I’ll be face down on the mat, again, tomorrow, then trying like Rocky to JUST GET UP. Only I won’t get a trophy belt thing in the end, and Adrienne won’t be there.

I’m pretty sure this post is a big stream of consciousness mess, but that’s all I got tonight. Grace be with you, my friends.

 

 

 

 

 

The President Will Sign the STAR Act Today!

To all my cancer family and friends as well as anyone who is interested, President Trump will sign the STAR Act into law today at 5:15 EST. I am told the signing ceremony can be viewed on C-span and will be live-streamed on http://www.whitehouse.gov

This is a very exciting day for all childhood cancer patients, survivors, cancer moms, cancer dads and childhood cancer advocates. I have prayed for this outcome and am thanking God for His grace.

It has been an honor to join and work with the Childhood Cancer Twitter Advocacy Team (and Lee, our darling fearless leader!)  as well as the American Alliance for Childhood Cancer in my precious few spare minutes.

I am including a graphic made by my friend, Joe Baber, an awesome childhood cancer advocate, whom I met in DC last September. He GETS it.

But it wasn’t just moms who made this happen. This is the concentrated effort and tireless work of cancer families, non-profit organizations and advocates across the country. This is countless hours invested in writing letters, emails and messaging on social media. This is travel and sacrifice of personal time as well as exhausting many other resources. This is blood, sweat, tears, grief, suffering and prayers. It is not for the faint of heart. Join us today in grateful celebration. We earned it.

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Day 864

“I was just doing my laps, mommy, and I caught two fish today!” Justin came bounding into the bedroom where I am piddling the afternoon away, lost somewhere in the Amazon.

He was wearing a bathing suit and droplets of water ran, unnoticed, from his hair-line to his chin. I put down my novel.

C8E284B5-2AD4-480F-8DF1-0E44DE538435“Doing my laps” is something I started with him, in our pool, this week, to exercise weakened legs and stretch his shriveled heal cords. And, Jeff, very awesomely (spell check says this isn’t a word but I say sure why not) took the boys fishing this morning.

Justin went on and on about the fish, and I did that Mom thing where you pretend to listen by looking at them and responding at the appropriate times. And you kind of are listening, but mostly you are thinking about something else.

That something else is this: for the first time in a long time, I saw Justin with a future. Not like him grown up with a beard or wearing a suit or anything weird like that.

It was a moment of him being a child – innocent and naive and exaggerating and proud of himself and happy – just as they should be. And it was a moment of realization that he is okay. Because we are never really completely sure what the future holds for him. Or what tomorrow holds for him.

But today he is okay. He IS surviving.

Today, my addled, over-stressed mind pushed through the hazy commotion, in exuberance, because I could finally imagine a future with my child, who wasn’t sick at some point in the day, every single day after day after day after day.

It was a moment too good not to share with my friends who have been so faithful to prayer and support and encouragement. Again, we thank you.

As a father has compassion on his children, so the Lord has compassion on those who fear him; for he knows how we are formed, he remembers that we are dust. The life of mortals is like grass, they flourish like a flower of the field; the wind blows over it and it is gone, and its place remembers it no more. But from everlasting to everlasting the Lord’s love is with those who fear him, and his righteousness with their children’s children—with those who keep his covenant and remember to obey his precepts. The Lord has established his throne in heaven, and his kingdom rules over all. Praise the Lord, you his angels, you mighty ones who do his bidding, who obey his word. Praise the Lord, all his heavenly hosts, you his servants who do his will. Praise the Lord, all his works everywhere in his dominion. Praise the Lord, my soul. Psalm 103:13-22

 

 

Just a Few Thoughts to Think

Well my week was full, like busy-full, AND chock full of ups and downs.

How about you?

Of course it was. Everyone has problems.

20FB22AC-6959-4376-97A6-AC6C0A177EB0These verses were shared with me earlier in the week and I keep going back to them. Yes, scripture on cans of soda. It was a belated birthday gift, and I will unapologetically drink them all. And read the verses, too, of course.

Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up! Ecclesiastes 4:8-9

Because of social media, the internet and texting, never has there been another time in history when it has been easier and quicker to reach out to someone.

Life is crazy. Life is busy. I forget to call people back. I forget to RSVP. I’ve forgotten to take Nicky to his orthodontist check up at least three times. I get it.

But we all fall. I usually fall on milk-soaked Oreos and the Psalms.

We all fall.

Maybe take a second to lift someone up today. I hope this blog lifts you up in some way.

Just a few thoughts to think.

Grace be with you, my friends.

 

 

 

 

 

 

Day 860

Justin was in clinic today for a CBC. I am very thrilled to report all his blood counts are right where they need to be.

As far as how well the needle stick process went? Let’s just say this. I write to you from my kitchen counter, where I sit eating sour cream with a spoon.

But. We are okay. His is okay. It’s all gonna be okay. Thank you for continued prayer and support, my faithful friends. Have a listen with me…

 

Day 853

Justin resumed physical therapy today. We decided to hold off on casting his legs because I feel it’s just too much for him at this time.

We will revisit this in the fall if his legs and feet do not improve.

A very special thank you to Miss Barr and second grade for sending cards and invites to upcoming special events at school. Unfortunately, Justin won’t be able to attend. We are trying to steer clear of schools and activities involving a lot of kids (and germs!) until Justin’s immune system has chance to recover, as much as possible, while still on chemotherapy.

B05B1784-EDEB-4ECE-8138-9E71DAB21852I’d also like to proudly report that Buddy is house trained and has become a fun companion to all the boys. And just when I’ve gotten used to the doggie smell, he has started shedding. Perfect.

STAR Act Passed…

033797E6-454F-4401-BFE2-35D80DBF303DAnd will now go to the President’s desk for signature! It’s been an honor to help advocate for this law.

I’ve watched my child suffer for way too long. It’s time for change. It’s time for better pediatric cancer treatments.

8F51E47F-2D8A-47B7-991B-BF89E60255AF