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.

“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.

“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

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…

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

Dang baseball.

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 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.

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.

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

If interested and able, you can view discussions and the vote happening now on the House floor on C-Span. I believe STAR is up next.

Praying for a unanimous yes!

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.

But I think it was probably simply because I’m so busy being “strong” that I don’t actually cry ENOUGH.

In better news, it helps to know I may have played a small part in helping to make a difference. Since our 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

We are back in clinic, today, preparing to have an IV placed (hot packs help prepare the veins). Justin is smiling because he’s on several milligrams of Ativan, at my request. Being able to relax really helps veins to cooperate. Since all the trauma of the many failed needle sticks, Justin is just not able to stay calm on his own.

We are hoping and praying that his body is still moving past the chemo and virus-induced bone marrow suppression and producing proper amounts of blood cells as it should.

Thank you for following, supporting, praying.

In sacrifice and offering you have not delighted, but you have given me an open ear. Burnt offering and sin offering you have not required. Then I said, “Behold, I have come; in the scroll of the book it is written of me: I delight to do your will, O my God; your law is within my heart.”I have told the glad news of deliverance in the great congregation; behold, I have not restrained my lips, as you know, O Lord. I have not hidden your deliverance within my heart;
I have spoken of your faithfulness and your salvation; I have not concealed your steadfast love and your faithfulness from the great congregation. As for you, O Lord, you will not restrain your mercy from me; your steadfast love and your faithfulness will ever preserve me! For evils have encompassed me beyond number; my iniquities have overtaken me, and I cannot see; they are more than the hairs of my head; my heart fails me. Be pleased, O Lord, to deliver me! O Lord, make haste to help me! Let those be put to shame and disappointed altogether who seek to snatch away my life; let those be turned back and brought to dishonor who delight in my hurt! Let those be appalled because of their shame who say to me, “Aha, Aha!” But may all who seek you rejoice and be glad in you; may those who love your salvation
say continually, “Great is the Lord!” As for me, I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer; do not delay, O my God!