Melatonin for better sleep and something called L-theanine, an extract found in green tea to relieve anxiety. These are supplements Michael is now taking courtesy of my after hours research.

All media has been removed for him, including television and video games. Yes, I think, for some children, certain images can cause and/or exacerbate anxiety. We are replacing screen time with board games, Lego building, charades, word searches.

I have already seen some improvement.

Michael will work with a therapist to help him cope with his own anxiety as well as extra worries that have resulted from the demon who is cancer. Michael’s own personal journey alongside Justin.

Michael’s teacher and other appropriate people have been informed and are working with us to ensure best results. I, again, ask for reaching out to stay limited to encouraging words. And prayer, of course, is the best thing anyone can do for us.

I want to send a very special thank you to Grace Church in Delaware for your consistent support. Your cards and well wishes are received and much appreciated! I had in mind to send a note or call but I’m sure I may never remember. So, thank you. And thank you to those who have stayed with us, still, as we fast approach 500 days in this thing.

God is so full of faithful.

I’m including some pictures from the past couple weeks, which I’ve been perusing for good cheer. Commentary below. Grace be with you, my friends.

1. Making a volcano.

2. Long time friend and I went to GCCS together now are 5th grade moms there together

3. Justin and the first grade class at GCCS

4. Michael conquers monkey bars

5. Nicky at the school carnival and baking shortbread, an “English snack” for his history project

6. Justin built a “scene from Jaws” out of Legos. No, he has not seen the movie so I should probably look into that.

7. Mom-Mom wearing the apron Justin picked for Mother’s Day

8. Mr. Netz, principal at GCCS, sent Justin a “Math Genius” award because…well, he is one…and there are just no award ceremonies in home school

9. I was made “Flower Princess Teacher” for the day, courtesy of the first grade girls

10. Justin hangs with his friends, Liv and Ryan

11. Nicky sings out at GCCS Spring Concert

Stomach pain. Inconsolable crying. Saying he wants to die. Michael is experiencing some kind of delayed reaction anxiety or post traumatic stress disorder. He has always been more wired that way than most kids. He’s reached his breaking point.

The appropriate professionals are involved. I am very confidant that he will be okay. It’s just a giant conundrum of stress for now, where I’m living on egg shells and eating my weight in Oreos.

I am asking that reaching out be limited to saying you’ll pray for us. For me, it’s too soon for questions and recommendations. I am trusting God and the professionals involved and simply can’t tolerate much more to process. Happy to chat but I won’t talk about this.

This is probably glaringly obvious but please do not share with any children in Michael’s class or any of his friends. He’s been told it’s okay to tell other children that he has missed school and baseball because of stomach pain.

Today was a good day to discover this. Happy to know that, in a cruel world, there is still growth. 

I cry aloud to God,
aloud to God, and he will hear me.
In the day of my trouble I seek the Lord;
in the night my hand is stretched out without wearying;
my soul refuses to be comforted.
When I remember God, I moan;
when I meditate, my spirit faints. Selah
You hold my eyelids open;
I am so troubled that I cannot speak.
I consider the days of old, the years long ago.
I said, “Let me remember my song in the night; let me meditate in my heart.”
Then my spirit made a diligent search:
“Will the Lord spurn forever,
and never again be favorable?
Has his steadfast love forever ceased?
Are his promises at an end for all time?
Has God forgotten to be gracious?
Has he in anger shut up his compassion?” Selah
Then I said, “I will appeal to this,
to the years of the right hand of the Most High.”
I will remember the deeds of the Lord;
yes, I will remember your wonders of old.
I will ponder all your work,
and meditate on your mighty deeds.
Your way, O God, is holy.
What god is great like our God?
You are the God who works wonders;
you have made known your might among the peoples.
You with your arm redeemed your people, the children of Jacob and Joseph. Selah. Psalm 77

This is my Mother’s Day article requested by the St. Baldrick’s Foundation and published on their blog. The editor said to write at a sixth grade reading level. Sure, no problem. Is there another way to write?

Continuing in my transparent, honest, spill-my-guts-out-there kind of way with hope that it helps to encourage others. Please take a moment to read and pray for us. (Click the link below)

Cancer moms. Faces which grow old too quickly. Faces swollen with grief. Faces molded into forced smiles. Faces lined with stony determination. Faces cracked in laughter at small victories. Faces lit like stars at another day of life. Sometimes all of these in one day. We are the Turning Faces.

https://www.stbaldricks.org/blog/post/dear-cancer-moms

Grace be with you, my friends.

Well I’ve shared all the good. But it’s only a true story if I also share the bad and the ugly. And I know this post will get much less attention than fun pictures in Florida. When I tell of happiness and success, I get notifications from my website host boasting thousands of views. Not so when I share the often sad realities of our journey.

Stay with me as we struggle.

Justin started another round of chemo yesterday. He cried in pain as the needle was pushed into his tender hand. He angrily told me to “shut up and leave me alone.” Because in his childish mind, I am partly to blame for allowing this to happen, no matter how many times I tell him the IV medicine is saving his life.

Childhood cancer patients are still treated with adult drugs because research is so underfunded. This is the result of a combination of large doses of methotrexate, vincristine, mecaptapurine  and steroids — a sick, despondent kid escaping the reality of how he feels in his  Minecrafting abilities.

We also learned yesterday in clinic that even after months of physical therapy, Justin’s legs are not improving. This neuropathy and heel cord tightening is a result of vincristine and causes pain and walking difficulties. Justin spent a good part of his wish trip in a stroller or wheelchair.  His doctor and physical therapist have recommended casting of his legs if this cruel side effect does not improve by the coming fall.

This would mean no soccer, no baseball, no running, and limited play for a while. But if we don’t do everything we can to correct the problem, it may mean he would struggle to do those things for the rest of his life.
Making this decisions is just impossible right now.

So I turned to Scripture and let the words of my good friend, King David, wrap me up like a favorite blanket, warming up those places where blood seems to have turned a little colder.

Now I know that the Lord saves his anointed; he answers him from his holy heaven with the saving power of his right hand. Some trust in chariots and some in horses, but we trust in the name of the Lord our God. They are brought to their knees and fall, but we rise up and stand firm. O Lord, save the king! Answer us when we call!  Psalm 20:6-9

Funny how you wake up to a perfectly warm, sunny day and frolic in the pool, then get in an airplane for two hours and…poof! You are back to cold reality doing laundry and making school lunches and wondering, “was it all a dream?”

Justin collapsed into exhausted but happily contended sleep very shortly after we got home. And I am busy making sure everyone has clean underwear for tomorrow.

But also pausing a moment to reflect on the slogan at Give Kids the World. “Giving kids happiness that inspires hope.” I get that, and it is so true that laughter and fun and feeling special immensely lifts the spirits of chronically ill children. The Village offers every bit of kid happiness you can possibly imagine. They absolutely live out their words, inspiring happiness and hope.

I am so thankful they are able to do this for sick children and their families. It was a warm and wonderful experience.

But this is a temporal happiness. I can’t help pointing this out and feeling overwhelming grateful to be able to look to a hope in Jesus that reaches past our years on this earth and into eternity.

I always think about this after doing something really good. Because it always ends. Day after tomorrow, Justin will start another round of chemo. But, in Heaven, the goodness will never melt into pain, sickness, stress and just our plain old mundane duties. It will never end.

Today, at 30,000 feet in the air, Justin said, “Now we are closer to God, mom.” His very literal child mind sees God in Heaven somewhere really high above the clouds.

I smiled. “Yes. But not because of an airplane. You are closer to God because you believe He is here.”

This is Katie Pierantozzi, back to the grind and now eating lettuce only. Thank you for your support and prayers. Grace be with you, my friends.

I finally got out of bed at 6:30 tonight. Me and mommy went to the playground and played giant Candyland. It was fun but then I was tired again. We went back to our room and met up with daddy and my brothers. They brought me a chocolate frog from Universal Studios. We are coming home tomorrow but mommy says we can swim for a little while before we go to the airport. Thanks for praying for me. Good night! Love, Justin 

Me and Justin 

Jeff, Nicky and Michael 

Me and Justin at the Village. Nicky and Michael take on the rollercoasters.

I’m pretty tired and lost my blanket but my mom says it will turn up. And she brought my spare so I’m okay but I can’t stand losing stuff. And I REALLY really want spaghetti and meatballs but my mom says there are plenty of choices at the buffet. Sometimes stuff I normally like just tastes weird to me because of my medicine. I’m trying not to freak out but sometimes I can’t help it. Mommy says we can swim and play the giant Candyland game later so I am happy about that. My brothers are going to Universal Studios with daddy to do the rides that I think are scary. Thanks for praying for me. Love, Justin