This is a story I don’t want to tell. I wish someone else would tell this story so I would know I’m not the only one.

This morning I drove Justin to physical therapy. He SEEMED okay, so I proceeded to take him to his class.

We got as far as the classroom door before absolute chaos ensued. He turned around, said he felt sick, ran away and locked me out of the car.

Some hushed threats in the parking lot. Door opens. We talk. He refuses to get out.

Nicky’s class walks by. He sees us and runs over because I’m very noticeably parked in the fire lane for what was supposed to be a quick drop off.

Hi mom! I fake a smile and give him a kiss. I don’t think he understood enough about what was happening to be embarrassed about it. That’s a plus.

I pull into a parking spot and wait until Justin calms down. I tell him if he doesn’t go in, we will go home and he will have to take a nap. Because that’s what you do when you’re sick.

He says okay.

I think he must be really feeling lousy because I point out that it’s just about time for recess. But he still wants to take a nap rather than play with his friends.

I guess therapy and a class are too much for him in one day. I must be pushing him too hard. 

We go home. There’s no handbook for this.

He wants to play mine craft when we get home. Now I am wondering if I just got played.

I say no. You were too tired for class so you need to take a nap. This is a strategy now.

He fights me. He throws things. Now the time in his room is a consequence.

Twenty minutes of crying and me sitting on the floor outside his room then he is asleep.

I am still sitting on the floor.

How to distinguish legitimate chemo-induced sickness from defiant behavior? Legitimate physical problem vs. “I don’t feel like doing that.” Steroid-induced mood swing or normal kid-type misbehavior?

Here’s the thing. Nobody knows for sure how to answer this question. Not the social worker. Not the child psychologist. All they ever say is to be consistent. Yeah, consistently in the dark, I say.

So am I going to force my kid on high doses of chemo to go to school when he claims he doesn’t feel good? 

No. I’m not.

One. Day. At. A. Time.

Justin did not feel well this morning. Jeff stayed with him at our hotel, while Nicky and Michael acted as my support team.

We visited tents and show our support for the many different childhood cancer foundations. We also spent time volunteering in the “Kids Activities” tent. Michael did an excellent job “running” the obstacle course and Nicky helped me hand out prizes.

Also pictured above is Justin’s picture on the tribute wall and me taking the mustard challenge. “No More Kids With Cancer” is a foundation which raises awareness for the toxic treatments given to pediatric patients. A chemical used in chemotherapy is also used to make mustard gas. One day, they hope to raise enough support to fund research for less toxic treatments. Eating a spoonful of mustard is just a fun way to get people engaged. Except without a hot dog to go with it, I have to say that much mustard in your mouth is pretty gross.

I could write pages and pages on our time spent here. These are people who care about making a difference. Even some who have lost a child to cancer still persevere in efforts to make better treatments, more cures and current pediatric cancer patients more comfortable and happy. To everyone I was able to meet and spend some time with, thank you and grace be with you, my friends.

Thrilled to meet the advocacy team I have been assisting in spare minutes and small ways. But every little bit matters.

Pediatric cancer patients, siblings, parents and advocates walked together to the White House where we held our candles high and, together, sang Amazing Grace to honor children taken by cancer and those still in the struggle. I am sure tomorrow’s events will be enjoyable, but I already know this was my favorite moment at Cure Fest.

Thank you for being part of our journey. More to come. Grace be with you and good night, my friends.

Michael made our sign and both Nicky and Michael marched alongside myself and many other cancer families and advocates to the Capitol. Justin stayed at the hotel with Jeff to rest and enjoy our view of the Washington Monument.

Coffee, check. Donuts, check.

Stop touching me! stop looking at me! Check.

My lecture on appeals to government, bi-partisan laws, and our right and privilege to making our voices heard because of “free speech and press” and a “government of the people, by the people and for the people” was, hopefully, somehow sponged into their brains because the boys definitely weren’t listening.

If interested, check out today’s schedule of events included in this post. Come along with us as we play just a little part in trying to make a difference…

…and 17th Spinal Tap 

Today was not easy by any stretch, but God was faithful to carry us through. It was a relatively smooth day at clinic. Justin is feeling sick and has slept most of the day. But that is normal after this procedure.

Justin’s liver situation has improved, but his white blood cell count is still too high. Chemotherapy dosages were increased, but not the drug which has been causing his leg and foot problems. I made sure of that.

Nicky and Michael were a surprisingly stellar support team. And Michael made friends with another “sibling” in the playroom.

We usually tell “knock-knock” jokes to help distract Justin from the lumbar puncture. Ever hear the “interrupting cow joke?” Even our doctor has to laugh. Today I came equipped with fresh material.

Next month will mark the half-way point of Justin’s treatment. We symbolized his 18 remaining treatments with an orange paper chain. 

Each month, Justin can rip off a link until the chain is gone and we are free. Well, we are praying it works out that way.

Thank you for the many encouraging messages. Very special thanks to sweet Chloe who is wearing a gold ribbon on her school backpack.

Onward we go. Grace be with you, my friends.

I’m wearing a special gift from Justin. A necklace, thoughtfully purchased with his grandmom, from the Seashell Museum, Ocean City

I’ve become part of a team who advocates for better funding and research for childhood cancer patients. I celebrated along with them as the President just signed the Race for Children Act, a comprehensive new law mandating that new cancer drugs are also considered for children when appropriate. Currently, children receive chemotherapy drugs, which are often outdated while adult cancers benefit from newly developed drugs. This law will bring more equity in terms of cutting edge treatments as well as allocating more funds for pediatric cancer clinical research.

I’ve written multiple letters to senators and even the president himself. I’ve shared our story with them.

Next month, I will go to Washington to continue childhood cancer advocacy at the CureFest 2017. I will stand with many others at the White House, with a lit candle, for those whom have lost or are still in the struggle.

September is childhood cancer awareness month. What does that even mean? It means: be aware enough to do something.

Take a moment to follow a child’s story on social media or in your own community, send a message of encouragement or take time to pray.

“It’s too depressing.” Well, yeah. Imagine how we feel.

“I don’t know what is the right thing to say.” There is no right thing. Just say you care. Just say you will pray.

To our community of cancer moms, dads, friends and advocacy team from around the world, I am honored to bear with you and will continue to hold you in prayer.

And let us not grow weary of doing good, for in due season we will reap, if we do not give up. 

A very special thank you to everyone who joined us for Michael’s play as well as coming by this weekend to celebrate Justin’s birthday. I also very much appreciate each message and comment.

And what did Justin say when asked if he enjoyed his birthday?

Yeah. I’m exhausted, mom.