Thoughts From the Floor on a Question No One Can Really Answer

This is an ugly 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. But not everyone will tell the whole truth. Makes you too vulnerable, open for criticism and judgment. To those I say, walk a mile in my shoes or maybe just don’t read on.

This is for my cancer moms.

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

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.

Oh I don’t think so.

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 school are too much for him in one day. I must be pushing him too hard. 

We go home. I am a little embarrassed, but then I think that anyone who saw us will understand. 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 school so you need to take a nap. This is a strategy now.

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

Twenty minutes of crying and me not letting him out of his room. Then he is asleep.

I am still sitting on the floor. Too physically tired to get up. Too mentally drained to figure out what to do next.

My point is this.

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.

I can talk to him later when things calm down, hoping he tells the truth. But I’m not Houdini. And I can’t read minds.

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? Because Justin is not on a typical low “maintenance” level chemo anymore. No. That didn’t work for him. His white blood count was too high. He was at risk for new blasts to form and leukemia to come back with a vengeance.

Justin is on a high dose. So, again, am I going to force my kid on high doses of chemo to go to school when he just did an hour of therapy and says he feels sick?

No. I’m not.

But I’m going to make sure today isn’t fun for him and hopefully figure it out. I’m going to keep PRAYING for WISDOM.

One. Day. At. A. Time.

 

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Full Disclosure

The trip was great, but the amount of pain I am in is astounding. I always talk about cancer now, and like to ignore my diseased muscles and joints.

Anyway, I will push through and be fine in a day or so. Just someone please remind me next year to forgo following my boys up the steps of the Lincoln Memorial. Even though Jeff half-carried me up, it was still Mt. Everest to me.

So there. I fought pediatric cancer and climbed a mountain, yet my motor vehicle card thingy says “disability.”

Justin is down for the count again today. A stronger dose of oral chemo is really affecting him this month. But hopefully back to school tomorrow!

My point is this. We don’t let limitations keep us down around here.

Trusting in God for a portion of His strength, and knowing it will come.

From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I. Psalm 61:2 

CureFest 2017

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. But keep up the good work, friends.

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.

 

 

Amazing Grace at the White House

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.

Road Trip!

Coffee, check. Donuts, check. Stop touching 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 making a difference…

Day 605

Justin has managed just about every other day at school since starting last week. Of course, it would be ideal if he could make it everyday. IMG_6704

But we don’t live in the ideal around here. And if YOU do, please tell me what THAT is like.

Every time Justin attends school is a major accomplishment. He generally comes home exhausted, as his little body continues to work extra hard to process heavy drugs and fight off cancer cells. IMG_6707

A very special thank you to Justin’s teacher, Miss Barr, for her willingness to accommodate his special needs and collaborate with me on making up missed assignments at home.

We have just about reached the midway point of Justin’s treatment. Eighteen months down, eighteen to go.

This weekend, we travel to Washington D.C. where I’ll finally get to meet our pediatric cancer advocacy twitter team in person! These are some extraordinary cancer parents and former pediatric cancer patients who have worked long and hard to raise awareness and advocate for better research funding.

IMG_6711Jeff, the boys and I will also take part in a candle light vigil at the White House and a “walk for the cure.” Of course, I will post pictures so be sure to look for those.

Thank you for continued support. It seriously makes my day when someone takes a minute to simply say they’re still praying for us. Grace be with you, my friends.

IMG_6713

My cousin just sent this over. Very cool. Grab some tickets and eat a cheese steak for me!  

 

Day 2 at School!

Justin is off to his second day of school! Praises, praises, and more praises to God.

A friend snapped this photo of her son at pick-up time yesterday and caught us in the background. I look thrilled he made it. He looks relieved it’s over.

I can tell he’s really tired. One day at a time.

 

596 Days…

…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” from someone on Fetynol? 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. IMG_6615

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. How thoughtful you are!

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