Immune Therapy Today + MIBG Score + Next Steps

CODY’S MIBG SCORE IS A ONE. 🥹😭🤍

I don’t even know how to put this update into words.  The radiologist is calling Cody’s scan a “NEAR COMPLETE RESPONSE.”  HUGE doesn’t even begin to describe this.

When we first started this journey, Cody’s MIBG score was a 26. After everything his little body has endured, his score is now 1.  Of the three tiny lymph nodes that still showed some activity, TWO are now completely normal.  And there is ONE tiny lymph node left with VERY minimal disease.

That’s it.

The rest of his body is showing NO EVIDENCE OF DISEASE on the MIBG scan.

We are praising Jesus for this. 🙏🏼. And there is another piece of this that feels so incredibly important.  Cody’s NEW immune system is working.

This is exactly what his care team has been hoping and praying to see. His body has gone through chemotherapy, surgery, radiation, two stem cell transplants and now immunotherapy, and we are seeing the response we desperately wanted.

Tonight, Cody heads into ROUND 4 OF IMMUNOTHERAPY.  We are still in the fight, but we are getting SO close to the part we have prayed about since the beginning:

SURVIVORSHIP.

And yes… we are starting to say that word.

There is still one tiny area that needs to be watched, and Cody still has treatment ahead of him. We don't want to get ahead of ourselves. But his care team is incredibly encouraged by these results, and we are overwhelmingly thankful.

SO WHAT HAPPENS AFTER TREATMENT?

I think there is a lot of confusion about what happens to a pediatric cancer patient when they are nearing the end of treatment.  You ring the bell.  You celebrate.  And then… what?

For Cody, the next chapter needs to be about rebuilding his little body.

Cancer treatment saves lives. We will forever be grateful for the doctors, nurses, researchers, surgeons, radiation teams, transplant teams and everyone who has fought alongside our boy.

But these treatments are HARD on a tiny body.

Cody has been exposed to years' worth of medications and procedures in just a little over a year. Chemotherapy can affect the bone marrow, immune system, GI tract, liver, kidneys, heart, bones, and nervous system. Radiation can create inflammation and tissue injury. Surgery takes an enormous physical toll. Stem cell transplant essentially requires the body to go through an extreme reset of the immune and blood-making systems.

And immunotherapy is asking his new immune system to recognize and attack what remains of the cancer. That can come with significant inflammation, pain, nerve effects, fatigue and other side effects.

Even when the cancer is gone, the work on the body doesn't simply disappear when treatment ends.  There is recovery to do.  There is rebuilding to do.

There is fertility, nutrition, gut health, immune support, mitochondrial health, detoxification pathways, inflammation, nervous system regulation, sleep, movement, nutrient repletion and long-term monitoring to think about.

And because Cody is only FOUR YEARS OLD, we aren't just thinking about how he feels next month.  We are thinking about the next 5, 10, 20, 50+ years of his life.  We want to give his body every opportunity to heal, recover and thrive after what it has been through.

That is why holistic care is such an important part of Cody's survivorship plan for our family. 

Over the next 2–6 months, we will be fundraising specifically for the holistic care Cody will need throughout the next 5 years of survivorship.

We have already seen firsthand how much his little body has been through. Now we want to help him rebuild.

AND RIGHT NOW… WE NEED OUR TRIBE. ❤️

We have a newborn baby at home now, and I simply cannot be at the hospital with Cody the way I have been throughout this journey.

So we are dividing and conquering.

And I want to publicly say THANK YOU to the women who have stepped up and said, “I’ll go. I’ll sit with him. I’ll help.”

Chel.
Mom.
Amanda.
Tia Amy.
Tia Laura.

Thank you for volunteering to go to the hospital so Eric can have a reprieve and I can be home with baby Colton.  I genuinely don't know how we would do this without our people.

And so many of you have asked, “How can we help?”  Right now, as we head into this next round of immunotherapy, DoorDash gift cards are INCREDIBLY helpful.

We will be dividing and conquering, and I will be driving back and forth to Riley multiple times a day with baby Colton.  A meal showing up at the door means we don't have to stop and figure out dinner. It means one less thing to carry.  It means someone is saying, “We've got you.”

And honestly, that means more than you know.

We are so incredibly thankful for every person who has prayed, donated, brought meals, watched our boys, sat with Cody, checked on us, sent messages, shared his story, purchased Cody's Comeback gear, or simply whispered his name to Jesus.

You have carried our family.  And now, as we enter this next chapter, we are asking you to keep praying.  Pray that this ONE tiny remaining area disappears.  Pray that Cody tolerates Round 4.  Pray for his immune system.  Pray for his little body to recover from everything it has endured.  Pray for protection over his long-term health.  Pray for our family as we navigate a newborn and a child still actively receiving cancer treatment.

And pray that this really is the beginning of Cody's survivorship story.

Because we are believing for more than just getting him through treatment.

We are believing for his life.

We are believing for his future.

We are believing for a little boy who gets to grow up, play baseball, be a big brother, go to school, make a mess, annoy his brothers, chase his dreams and live a BIG, beautiful life.

And today, we are just going to stop and say:

THANK YOU, JESUS.

MIBG 26 → 1.
Near complete response.
Two previously active nodes now completely normal.
One tiny area with minimal remaining disease.
No evidence of disease anywhere else.

Our boy is still fighting. And so are we. 🤍

“The Lord has done great things for us, and we are filled with joy.” —Psalm 126:3