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!

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 chemotherapy injected into his spine.

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

I get weary.

Most 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? Cry? 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.

To all cancer family and friends, 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 as well as the American Alliance for Childhood Cancer.

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

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.

“I was just doing my laps, mommy, and I caught two fish today!” Justin came bounding in. He was wearing a bathing suit and droplets of water ran, unnoticed, from his hair-line to his chin.

I put down my novel.

“Doing my laps” is something I started with him, in our pool, this week, to exercise weakened legs and stretch his heal cords. And Jeff 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.

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

You don’t blink an eye when the pediatrician says your other kid has a concussion.

If you see a woman in disguise at the nearest bus stop, it could very possibly be me.

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

I’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.

And will now go to the President’s desk for signature! It’s been an honor to help advocate for this law.

Well we tried to go out to a nice dinner for my 40th birthday. But I just ended up bawling into my Baked Alaska after Justin called, crying and pleading for me to come home (he’s been having a rough time since starting chemo again). I’m not sure if I was mostly crying because Justin is always sick or because I can rarely get a break from it.

Or because I am forty.

In better news, it helps to know I may have played a small part in helping to make a difference. Since the Childhood Cancer Alliance stormed The Hill, several more reps have signed on to co-sponsor the STAR Act and a vote has been scheduled.

Justin’s body continues to recover. His white blood cell is now up to a healthy 1,040, and he did not need any transfusions today.

He is doing well. He is doing really well.

His doctors restarted his chemo medications at fifty percent of his previous dose and Justin will be checked again in two weeks.

And. We are still on track to end treatment on March 25, 2019!

I hope this news encourages you, especially if you have been praying for us. God hears us. God loves us.

Stay with us to see what else God will do. Be blessed.

Be merciful to me, O God, be merciful to me, for in you my soul takes refuge; in the shadow of your wings I will take refuge, till the storms of destruction pass by. I cry out to God Most High, to God who fulfills his purpose for me. He will send from heaven and save me; he will put to shame him who tramples on me. Selah God will send out his steadfast love and his faithfulness! Psalm 57:1-3