They were finally able to get a good blood draw. Everything is on hold until we get those results except he a ton of antibiotics. Justin is still running a fever and has no ability to fight infection.

I really need to sleep and probably eat something. And I still have no idea what’s going on with Justin. God is faithful.

Also I was able to FaceTime sing happy birthday to Michael.

I waited patiently for the Lord;
he turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear the Lord
and put their trust in him. Psalm 40:1-3

We are somewhere in time between the deep part of night and early dawn.

Most everyone I know is sleeping. But I am here alone fighting for my son’s life.

He had a reaction to the blood transfusion. High fever. Vomiting. Stop transfusion for blood cultures and antibiotics but current IV is not usable. In comes the phlebotomist but not before I demand Valium for Justin. This is his fourth needle stick today and he hasn’t slept in way too many hours.

Again the needle fails to find a vein. I watch as she moves the needle around under his skin. He screams and begs her to stop. Enough. I tell her to take it out.

He is finally sleeping. But the IV still has to be done. A new person just entered and I feel sick.

Another fail. Absolute horror. I tell the doctor to figure it out but not tonight. He needs sleep.

He is collapsed against me, arms and hands bruised, face soaked in tears and still hot with fever.

Now I think we must be in hell. Although I haven’t slept in almost 30 hours so my judgement could be a little off.

Justin is finally asleep with someone else’s blood being slowly pushed into his little veins.

Jeff has gone home to take care of Nicky and Michael. I am laying on a horrid plastic cushioned couch thing, a poor excuse for a bed. But who really cares.

It is quiet except for the hum of machines monitoring Justin’s blood pressure, etc. I probably have at least ten minutes to myself before the nurse comes in again or Justin wakes up and needs something. I should try to relax or pray or sleep, but I can’t do anything except watch lights flicker on the vital signs monitor thing.

Tomorrow I will walk my child to surgery again. They will induce unconsciousness and insert a large needle into his hip, withdrawing bone marrow again. Then they will call us into a conference room again. I don’t know what they will say but I’ve already been in a conference room today.

And I knew that look. I knew what was coming.

How long can a mother watch their child suffer? How much is too much? What does it take to break a person? I don’t know but maybe I’m getting closer.

I’d love to be able to tell you I’m reading my favorite psalms and feeling the presence of God. But that just wouldn’t be the truth.

I believe God is here and completely in control. I am trusting God. I really am.

But beyond that I feel nothing.

Thank you for reading, praying, staying with us.

We are settled in a room at CHOP after a nauseating ambulance ride.

Justin will get a blood transfusion as well as a platelet transfusion tonight.

That’s all I know for sure right now.

Justin is in pretty good spirits since dad brought his Xbox and mom ordered him spaghetti and chocolate milk.

My eyes feel like they were dipped in chalk dust.

Tomorrow is Michael’s birthday and I don’t know if I will be able to see him.

I snapped a few pics. As always we are doing our best to smile and stay positive.

waiting for an ambulance to transport Justin to the main hospital.

His blood counts are dangerously low. He will have transfusions, a CT scan of his head bc of headaches and a bone aspiration to check for leukemia relapse.

i can’t answer texts but I am seeing them and I  thank you for praying.

Took an emergency run to clinic today. Bad headaches and bruising all over Justin’s body.

Something isn’t right.

Dr. Ordered. Chest x-ray and bloods but they couldn’t get a needle in. Twice. He is hysterical.

His nose is bleeding.

Likely they send him to main hospital.

It’s the beginning all over again. What is happening?

where are you God where are you

I am safely home and happy to be here. Other than a chewed-up throw rug, the house is actually NOT a disaster.

I didn’t have time to include photo commentary in my last post. You were seeing the NJ Advocacy team with Steve Lieberman at the office of Bob Menendez, myself in the Senate building, a group photo of advocates from 37 states on the steps of Capitol Hill, and the Supreme Court building just because it is cool. Think that about covers it.

I met some amazingly dedicated folks from the Alliance, made lifelong friends with people who really “get it” and shared our story with staffers in Congress who have the ability to make a difference. Our team had several other meetings, which were not pictured. We were received support of the STAR Act at each meeting.

Altogether, it was an awesome experience in living out our cause and getting involved in the mechanics of our great democracy, in hope of making a real difference for future pediatric patients. Thank you for support, prayers and encouraging comments. They were all received and very much appreciated.

It was a blessing to get a moment’s rest from my cancer mom duties and regular mom duties and puppy mom duties but I’m back in action today. Well, sort of. Justin and I are having some long-awaited cuddles and watching Nick Jr.

God is faithful. Grace be with you, my friends.

On my way to meet other advocates for breakfast then onto a bus to the Hill.

Here’s a lousy picture of the Capitol building from the window of my Uber car where my favorite song, It is Well With My Soul plays on the radio.

God is always with us.

Advocates from each state have gathered in a Marriott hotel ballroom, with the Alliance, to learn how to best share personal stories, answer difficult questions and share key points of the bill we hope to get passed – H.R. 820 STAR Act which can be viewed in detail at http://www.congress.gov