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

 

 

 

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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…

 

Cancer Mom Confession

As a childhood cancer mom and advocate, I don’t only think about my own child. I think about them all. I follow their stories, and I pray for them.

But I also believe they are in the hands of a loving God.

Allow me to illustrate my beliefs with a short story (that I kind of ripped off):

There were sheep in a field but they were also children.

There was no fence around them and the field was really big and the sky very dark. I was there but I wasn’t really there and they were so vulnerable and I couldn’t help them.

Then a huge beast came out of the ground. Something like a shark. I tried to run but my feet were glued to the ground. I tried to call for help but could make no sound.

The shark beast made terrible noise and pushed the sheep children down until they were hurt and crying.

Desperately I tried to get to them but I was futilely stuck in place.

Then there was a man whose face I couldn’t see. But I knew he was smiling at me.

He took all of the children into his arms. He was able to hold all of them at once.

Then the sheep children didn’t look hurt anymore. And they didn’t look like sheep. They only looked like children should look and they were playing and laughing like children should play and laugh.

It was then that I knew who He was.

And now here is the original. Jesus’ MUCH-better-and-not-so-weird short story:

So Jesus again said to them, “Truly, truly, I say to you, I am the door of the sheep. All who came before me are thieves and robbers, but the sheep did not listen to them. I am the door. If anyone enters by me, he will be saved and will go in and out and find pasture. The thief comes only to steal and kill and destroy. I came that they may have life and have it abundantly. I am the good shepherd. The good shepherd lays down his life for the sheep. He who is a hired hand and not a shepherd, who does not own the sheep, sees the wolf coming and leaves the sheep and flees, and the wolf snatches them and scatters them. He flees because he is a hired hand and cares nothing for the sheep. I am the good shepherd. I know my own and my own know me, just as the Father knows me and I know the Father; and I lay down my life for the sheep. And I have other sheep that are not of this fold. I must bring them also, and they will listen to my voice. So there will be one flock, one shepherd.” John 10:7-16

I think it’s very important to note that Jesus promises to give life “abundantly” but that does not mean necessarily in this world.

In this world you will have many troubles; but take heart I have overcome the world!” John 16:33b

The abundant life promised is yet to come AFTER this one. It is a GIFT, by grace, through faith in our Lord Jesus Christ. Grace be with you, my friends.