A MUST-READ

I share very personal experiences for one reason. To glorify God and bear witness to His goodness and grace.

We very recently lost our health benefits. We can skip Friday pizza night, but this is clearly something we cannot do without. But I didn’t mention it here because God had given me such a peace that it would all be okay.

Although Jeff is still not employed, through circumstances clearly engineered by God, we received insurance cards TODAY. Justin is in clinic TOMORROW to begin a new cycle of chemotherapy.

Awesome right!!! Wait there’s more…

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I haven’t found words for this yet. Only tears of joy and gratitude. I will write more on this when I can say something besides “wow.”

I mean I KNOW God provides. I BELIEVE it. I’ve SEEN it. But this…this is more than I could ever imagine.

“Thank you” seems so inadequate. Hopefully I can think of something better to say when I pull myself together.

Wow.

If you aren’t crying with me yet, this will get you. Our boys varsity soccer team came off the field at today’s game to personally greet Justin with high fives and fist bumps.

836F01D6-5D98-4AEF-8AF1-4F4E37074D11This kid was over the moon. He was beaming. These boys know Justin’s name and care about his struggle! A very special thank you to Danny Mulder and all the guys.

As long as I live, I will never forget this day and what Justin said to me.

“When I am in pain, mom, God feels it too. And now He must feel happy because I am happy.”

God is good, baby, God is good. He has not left us and He never will.

Psalm 145

I will extol you, my God and King, and bless your name forever and ever. Every day I will bless you and praise your name forever and ever. Great is the Lord, and greatly to be praised, and his greatness is unsearchable. One generation shall commend your works to another, and shall declare your mighty acts. On the glorious splendor of your majesty, and on your wondrous works, I will meditate. They shall speak of the might of your awesome deeds, and I will declare your greatness. They shall pour forth the fame of your abundant goodness and shall sing aloud of your righteousness. The Lord is gracious and merciful, slow to anger and abounding in steadfast love. The Lord is good to all, and his mercy is over all that he has made. All your works shall give thanks to you, O Lordand all your saints shall bless you! They shall speak of the glory of your kingdom and tell of your power, to make known to the children of man your mighty deeds, and the glorious splendor of your kingdom. Your kingdom is an everlasting kingdom, and your dominion endures throughout all generations. The Lord is faithful in all his words and kind in all his works. The Lord upholds all who are falling and raises up all who are bowed down. The eyes of all look to you, and you give them their food in due season. You open your hand; you satisfy the desire of every living thing. The Lord is righteous in all his ways and kind in all his works. The Lord is near to all who call on him, to all who call on him in truth. He fulfills the desire of those who fear him; he also hears their cry and saves them. The Lord preserves all who love him, but all the wicked he will destroy. My mouth will speak the praise of the Lord, and let all flesh bless his holy name forever and ever. 

 

 

 

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Day 976

For what credit is it if, when you sin and are beaten for it, you endure? But if when you do good and suffer for it you endure, this is a gracious thing in the sight of God. For to this you have been called, because Christ also suffered for you, leaving you an example, so that you might follow in his steps. 1 Peter 2:20-21

Justin cried his eyes out last night because another boy on his flag football team called him “fatty”.

Yes, I wanted to drop kick that kid. No, I didn’t do it.

Justin is on a boat load of steroids and drugs, which have caused weight gain.

He also eats stuff like cheezits dipped in chocolate milk.

575E12FF-0EEA-4E04-93E4-446C4EA1B615We allow it and won’t be judged for it.

Chemotherapy does weird things to your taste buds and causes outrageous cravings.

It’s a very unhelpful side effect, but even doctors advise, it’s a futile battle to fight during treatment.

I know cancer moms, whose child never tasted a french fry, running out to McDonald’s at 10pm. Because when your child is in severe pain and vomiting through their nose, but also screaming uncontrollably for a happy meal because all they can do is watch TV and they just saw a fast food commercial, you go get it because that’s the only thing you can fix for them.

Parents, please remind your kids how stupid and hurtful their words can be.

Jeff has not yet gained employment, but we are ever hopeful.

Thank you for generous giving as well as unparalleled support and encouragement. Grace be with you, my friends.

Day 973

5CCC644C-60E1-4E35-A981-A2E988C2A4CDWe have discovered a sport Justin can play, and actually make it through a whole game. Flag football. They play two 15 minutes halves. His body can handle that once a week.

It also helps that his dad is the coach. Jeff knows when Justin needs a break.

Justin is so happy to be part of a team again. He is thrilled to be involved in sports again.

And he did really well. He looked like every other kid out there. He wasn’t significantly slower or anything like that.

And, lately, Justin has been putting more effort into his school work. And not throwing nearly as many insane, steroid-induced tantrums.

So I think: maybe he is coming back to us. Maybe he is getting well.

He’s been in treatment for so, so long. Could he finally, REALLY be getting well?!

Then I think: this has been the hardest thing I’ve ever done. And I have jumped out of an airplane, taught in inner-city schools and birthed a ten-pound baby.

But this. This has taken up my whole being. Staying next to this child for every second of his suffering.

And it’s been thousands and thousands of seconds.

It isn’t over. We have 6 months of treatments to go. Then who knows what beyond that.

But I think maybe Justin is coming back to us. I see him coming back.

Thank you, my friends, for your continued support and encouragement. Stay with us as we begin to approach the finish line.

And, God, let it be so that we will be able to say:

I have fought the good fight, I have finished the race, I have kept the faith. 2 Timothy 4:7

 

 

 

Day 971

This week it was more physical therapy, getting fitted for new leg-stretching braces, library day, homeschooling, keyboarding class and Justin getting caught stuffing his face with fruit snacks and cheese dip. Weird chemo cravings.

A very special thank you to Gloucester County Christian School’s boys varsity soccer team for making a sick little boy feel very special. They are wearing Justin’s initials (pictured on the sleeve below in orange) on their warm-up jerseys throughout the season. They also had one made for Justin and gave it to him at yesterday’s home opener. Thanks, guys. So cool.

After all that, here is a glimpse of today (pictured below). THANK YOU for continued support and prayer. God is good and He DOES provide.

For you are my rock and my fortress; and for your name’s sake you lead me and guide me; you take me out of the net they have hidden for me, for you are my refuge. Into your hand I commit my spirit; you have redeemed me, O LORD, faithful God. Psalm 31:3-5

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Day 967

🌟Justin played an entire game of flag football yesterday! He is exhausted today, but Buddy is there for him.

🌟I was able to travel to DC over the weekend to continue support and advocacy for childhood cancer patients, survivors and families of children who have passed, called angels in the childhood cancer community. I learned that the bill I helped lobby for has not only become law, but Congress has also voted to fully fund the survivorship, treatment, access, and research initiative (STAR act).

Someday we hope that chemotherapy will be a thing of the past. As Congressman Mike McCaul, champion of the STAR Act, put it, “we will say ‘how barbaric’!” Yes, indeed. We get that here at the Pierantozzi home.

I cried with parents who lost their child and we lit candles in their memory at the White House. We cheered for kids who couldn’t walk a year ago then took the stage Saturday night to dance ballet or sing songs they had written. For some, pain and hardship can be well-managed through exposition of the arts.

🌟We are inexpressibly grateful to God for providing through go fund me and private giving. We are able to cover all bills this month. Thank you for answering the call. God is good.

973178E9-1D9D-42F8-855D-00EB3596D340We will continue to run the campaign until Jeff gains employment. He is pursuing several leads. Thank you for continued support and prayer. Grace be with you, my friends.

https://www.gofundme.com/sponsor-grace-steps

 

More on Something I Haven’t Talked About…

A very special thank you to those who have given generously through “go fund me” or privately.

I want to go ahead and tell the full story behind my request for sponsorship. In addition to dealing with extra costs incurred by having a child in cancer treatment for two and a half years, the company Jeff works for is basically going under. They have not paid him in several months. He is still doing some work for them in exchange for benefits, but there is no guarantee how long this will last.

However, we are super thankful to still have medical coverage, and we know this is grace!

Jeff has been steadily looking for a new job and I have been looking into work I can do from home. But nothing has come through yet.

God provides. He has utilized many of you for this purpose and we are so very grateful. Thank you for continued support, encouragement and prayer.

And God is able to make all grace abound to you, so that having all sufficiency in all things at all times, you may abound in every good work. 2 Corinthians 9:8

https://www.gofundme.com/sponsor-grace-steps

 

 

Something I Never, Ever Talk About…

But the time has come and I gotta go there.

I am not simply asking for donations, but to consider being a one time “sponsor” if you have found this blog to be helpful, inspiring, encouraging, entertaining or hopefully just something worth reading that doesn’t stink.

Please click the link below for more details on how you can support us as we continue to share our journey with childhood cancer. Thank you for reading and grace be with you, my friends.

P.S. you can totally ignore this post and I’ll still keep cranking out my nutty updates

https://www.gofundme.com/sponsor-grace-steps

 

 

From One Cancer Mom to Another…

A good friend just told me about a classmate of her kids being very recently diagnosed with ALL (acute lymphoblastic leukemia). This is the same as Justin.

My friend referred this child’s mom to my blog.

I don’t have her contact information. But I wouldn’t reach out anyway, to be honest. Not now. At the beginning, you are surviving and trying everything in your power to stay sane.

But, my friend, if you happen to be reading, I have a personal message for you. THIS WILL BE AWFUL. BUT YOUR CHILD WILL LIVE. AND GOD IS WITH YOU. In the hospital, in your home, on the floor. All the lonely moments in the night when it’s just you and your kid catching vomit, fighting for pain relief, comfort, sleep and the morning light to come.

It WILL come. God does NOT leave a sick child. This is evidenced to me in the way Justin speaks about God and Heaven. He believes because he KNOWS.

It’s a special kind of grace for sick kids. I have SEEN it.

Don’t respond to this or anyone for that matter. For now, just find a pillow you can scream into and a song that brings you peace.

If nothing comes to your addled, overwhelmed, exhausted mind, then please take mine. Grace be with you, my friend.

First Day of School!

One 7th grader, one 4th grader, one home school student, one big furry pain in the butt, one hurried and very imperfect picture and about nine coffees.

We are stressed and tired and making it up as we go along most of the time. But we are also proud and so very thankful.

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Day 954

Today is a routine lumbar puncture to check for leukemia cells in the spinal fluid as well as to inject chemotherapy into Justin’s central nervous system.

It doesn’t seem like a big deal anymore because, sadly, we are used to it. But when I think about what is really happening, I pretty much hate it.

I choose to focus on the fact that this treatment is saving Justin’s life. Giving him a chance to LIVE. To stay with us.

Being pushed into adopting this outlook for my own survival has certainly changed my perspective. For the most part, I have moved past typical American attitudes.

I simply don’t worry about things that don’t be really matter. I don’t feel self-entitled. I don’t work overtime to try to make everything perfect for my kids, or even fair. I’ve learned that doing so, as a parent, isn’t really doing them any favors in the long run anyway.

I make tons of mistakes. I am flawed. I am human. But I am learning how to REALLY trust God.

Some people think it’s crazy to trust in Someone you can’t see. Something bigger than our own ego and capabilities. I say, what a relief. This is grace.

I have been playing music since the beginning, but recently discovered a little song which really helps him to relax. This is Justin’s song…