You know when you plan so much in your mind to get a good night’s sleep that you actually don’t? Anyway the peace and quiet and room service was amazing.

Very shortly, I will be headed over to the hotel where training classes and advocate’s lunch will take place. I hope to see some familiar faces from CureFest last September.

A very special thank you to Jeff, my mom and stepdad for collectively doing my job while I am away. Also I very much appreciate the encouraging comments via text, email and twitter. I will continue to post thoughts and maybe even a few pictures.

Thank you for prayers and support.

It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed. Deuteronomy 31:8

I have packed the essentials, and will be on the road in just a few hours.

The American Alliance for Childhood Cancer has scheduled four meetings for me on Tuesday – two senators and two representatives.

Tomorrow I will attend training classes.

Tonight I will get to eat what I want to eat, watch on TV what I want to watch and sleep in a bed with no kids or pets. Dreams do come true.

I anticipate several new and exciting experiences in the next few days. Yesterday, I decided to kick it all off with something else new to me – a gel manicure. She took one look at my hands and said, “you don’t get your nails done often, do you?”

No. No, I don’t.

Justin is experiencing a myriad of chemotherapy side effects this week including foot pain, fatigue, nausea and interrupted sleep. Today it was anti-nausea meds, Tylenol, a heating pad and a movie at 3am.

Thank you for supportive comments regarding my upcoming visit to Capitol Hill.

I’m just a mom. But I live with the daily harsh realities of pediatric cancer every minute of my life. I have been there for every needle, every surgery, every bucket of vomit, every blood transfusion, every session of physical therapy, every spinal tap, every chemotherapy infusion, every pain, every scream, every tear, every sleepless night, every fear, every disappointment. I’ve been hit, kicked and vomited on. I’ve changed diapers on a five-year-old who couldn’t stand. I’ve been Justin’s nurse, psychiatrist, educator, therapist.

This is being a cancer mom. And there are times you think about getting in your car, driving away and never coming back.

But you don’t.

…and inviting you to come along.

Yesterday a friend drove Justin and I home, with a barf bag in tow, midway through our church service. This still happens two years into his treatment.

This week, I’ll be preparing to share our story with congressman and help to put faces on the number one disease that takes children’s lives in America. Awesome kids like Damon Billeck, who went to heaven earlier this month. He lost his arm first, then his life to osteosarcoma.

And my own kid continues to survive, but suffers current side effects and who knows what long-term side effects. Kids need more treatments and better drugs. They need a voice. One week from today, Congress will hear mine.

Please pray for wisdom and clarity. As a friend reminded me, “the heart of the king is in the hand of the Lord.”

That is a forced smile for Mom because Justin hates wearing his leg stretching braces. But I am grateful to have them as his lower legs and feet are again showing signs of neuropathy, heel cord tightness and weakness. Justin will resume physical therapy starting next week.

I was awarded a scholarship by the American Alliance for Childhood Cancer, which basically means they pay for me to spend a few days in D.C. later this month. I will attend training classes on how to effectively share our story, as well as how to specifically advocate for a bill called the STAR Act (Survivorship, Treatment, Advocacy, Research) to be sponsored and passed. This would ensure that more research dollars are allocated, by the National Cancer Institute, toward better chemotherapy drugs and more treatment options for pediatric cancer patients. (Currently 96% of the total budget goes to adult cancers and only 4% to childhood cancer research.) Myself and other advocates, from around the country, will then go to Capitol Hill, where meetings with congressman have been arranged.

Okay, that was all very boring to read I’m sure. But it’s pretty important to me to be able to DO something, and to share this opportunity God has given me. It all feels a little daunting, but I do like a good challenge. More on this to come.

Thank you for continued support and prayer. God is faithful.

Remember your word to your servant,
in which you have made me hope.
This is my comfort in my affliction,
that your promise gives me life. Psalm 119:49-50 

Bad news: Justin’s white blood cell count is higher than its ever been at 5,100. This is far from ideal for a leukemia patient, but his oncology team is hesitant to increase his chemotherapy dosages because his liver screening is still abnormal.

I am choosing to stay positive and trust God. Justin’s IV placement and physical exam went smoothly today. He is tired, but feeling relatively well.

Good news: We have entered our third year of chemotherapy. If everything goes according to plan, we now have an end of treatment date in sight. March 25, 2019.

Some very special mentions:

Thank you to the Covelli family for allowing Luke to accompany Justin to clinic every month.  Luke is a kind and patient friend, and it really helps Justin to have his best pal along.

Thank you to Matt and Anne Purzycki for providing dinner to us every week. One less night I have to cook! Their son is a leukemia survivor who is now in his 30’s and healthy. Anne “gets” the cancer mom thing and always brings an encouraging word with her yummy food.

Thank you to my mom and stepdad for also faithfully helping me with the cooking as well as watching the boys so I can get a break here and there.

Thank you to Don Netz and Gloucester County Christian School for hosting a leukemia and lymphoma fundraiser as well as an upcoming blood drive. Please consider donating to either or both. Every dollar donated for research matters, and blood transfusions are a regular part of the cancer patient’s life.

Thank you ALL for continued support, prayer and encouraging comments. It helps more than you know. God is faithful.

Here we go again. Another cycle of chemotherapy. At least it doesn’t smell like dog here at the clinic and the bathrooms are really clean. More later…

Lately I’ve been thinking a lot about unplugging the boys’ Xbox, placing it in our driveway and backing over it with the mini-van. The fighting gets to me.

Justin seems to be holding up well, notwithstanding this month’s abnormal test results. He hasn’t taken up hockey, just lost a whole bunch of teeth in, like, two days. I have been watching him carefully for signs and symptoms of liver distress and/or low blood counts.

Nicky and Michael have revved up their “it’s not fair” campaign, citing Justin getting more TV time, etc. It never fails to amuse and annoy me that kids insist on demanding justice for everyone except themselves.

Buddy, the dog who we tolerate for his therapeutic qualities and love of our children, is still thriving despite his affinity for eating socks. I’m talking about whole, entire socks swallowed and regurgitated on our living room floor. And it really doesn’t seem to matter that I constantly pick up and keep a baby gate securely barring the stairs to our second level crime zone of laundry piles. He still finds them.

Michael painted this mug for “your favorite drink, mom.” Yes, in fact, I’ll take a refill now. Thank you for continued support and prayer. God is faithful.

I am good and tired of watching my child suffer.

Three times they pushed a nauseatingly large needle directly into his spine. I try not to look. I sit by his side. I am always by his side.

I catch tears that drop unheeded. He is sedated but, still, he feels the pain.

I smile for him, and we tell his favorite knock-knock jokes. We are in a sterile room with several nurses. Machines monitor his heart, and it all seems okay.

But it’s not okay. I hate it.

“Mom, I just can’t wait til I’m done with cancer so I can have a regular life.”

I try to draw him out. ”What do you think a regular life is like?”

“It’s like a life where you don’t feel sick all the time and you get to have more fun. And I won’t be so mad and aggressive anymore. I don’t remember what it feels like to have a regular life.”

I don’t remember either, baby, I don’t remember either. But, no matter what kind of life we are given, I will always be right beside you.

A Psalm of Life
Henry Wadsworth Longfellow

What the Heart of the Young Man Said to the Psalmist

Tell me not, in mournful numbers,
“Life is but an empty dream!”
For the soul is dead that slumbers,
And things are not what they seem.

Life is real! Life is earnest!
And the grave is not its goal;
“Dust thou art, to dust returnest,”
Was not spoken of the soul.

Not enjoyment, and not sorrow,
Is our destined end or way;
But to act, that each to-morrow
Finds us farther than to-day.

Art is long, and Time is fleeting,
And our hearts, though stout and brave,
Still, like muffled drums, are beating
Funeral marches to the grave.

In the world’s broad field of battle,
In the bivouac of Life,
Be not like dumb, driven cattle!
Be a hero in the strife!

Trust no Future, howe’er pleasant!
Let the dead Past bury its dead!
Act,–act in the living Present!
Heart within, and God o’erhead!

Lives of great men all remind us
We can make our lives sublime,
And, departing, leave behind us
Footprints on the sands of time;

Footprints, that perhaps another,
Sailing o’er life’s solemn main,
A forlorn and shipwrecked brother,
Seeing, shall take heart again.

Let us, then, be up and doing,
With a heart for any fate;
Still achieving, still pursuing
Learn to labor and to wait.

To my beautiful sons: I hope someday this blog is a footprint, which points you to the One who is “able to do exceedingly abundantly above all we ask or think.” (Ephesians 3:20) And keep pressing on, loves, keep pressing on.

Justin did really well today. He doesn’t FEEL well, but he handled IV placement and three, yes, three lumbar punctures very well. In the “childhood cancer world” pediatric cancer patients are often called warriors. Yes, he is.

Justin’s white blood cell count is again higher than his oncology team would like it to be. But his platelets are on the low side, and his liver toxicity screening again came back abnormal. They are not stopping chemo medications at this point, but we will need to watch him closely for signs of either issue becoming worse.

We talked about (hopefully) having one year of treatment to go. Justin said he will miss his favorite nurse (pictured below playing Hedbanz with Justin, a funny game similar to twenty questions) but will never, ever miss cancer. “Not in a million billion years, Mom.”

Agreed.

To Nicky and Michael: I see you, I love you, I’m doing my best for you.

Thank you for continued prayer and support.