Addy Joy’s Hope Foundation

08/05/2026

Hi everyone! We wanted to share a quick update on Bowen after his recent MRI.

First, the good news: Bowen’s shunt is functioning properly, and his brain bleed continues to heal beautifully. We are so thankful for those answered prayers!

There is one small area that the doctors are keeping an eye on, but they weren’t able to get a clear answer because the MRI quality made it difficult to interpret. They explained that this tiny 3 mm area could be several different things, including a shunt artifact, a small pocket of blood, movement during the scan, or progression. At this point, they simply don’t have enough information to know for sure.

Right now, we’re asking everyone to please pray for clarity and wisdom for his medical team as they continue to monitor this area. We ask that God leads and guides us as we make decisions regarding his care. Most of all, we ask that you pray this is not progression. Please continue praying that God places His healing hand on Bowen’s tumor, protects him, and continues to keep him healthy and strong.

07/23/2026

Yesterday, Hazel had her 1st vaccine in MSKCC's Neuroblastoma Vaccine trial.

This trial lasts 3 years. There are 7 vaccines in year 1 and boosters during year 2 and 3. Since Neuroblastoma's relapse rate is so high, we will still scan every 3 months.

The first 3 vaccines are 1 week apart. So yesterday, next tuesday and then the tuesday after.

Elijah completed vaccine once and then tried again a 2nd time and it did not work for him. Thankfully, every child is different.

The injection itself hurts bad. They say it feels like bacon grease under the skin and it produces a very large and painful skin reaction at the injection site. Well. For Elijah it did.

She took yesterdays injection like a champ! There is minimal redness today ans she did not get a fever (like many kids do). Of course my mind instantly wonders about the efficacy with no side effects. 🤔 but am reminded that Elijah had insane reactions and it didnt work for him. 🤷‍♀️.

Currently, we are at LGA, eating, and waiting to head home. Thankful for a short trip. We fly out again next Monday.

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Thank you for praying for Hazel. God hears our prayers. 😍.

07/10/2026

MIBG and PET Scan Results.

In the days before scans and while waiting for results "Lord, I know you will carry me through. Calm my anxiety." Became my mantra. Psalm 61:1-2 are my favorite. LEAD ME TO THE ROCK THAT IS HIGHER THAN I.

First we got the MIBG scan report:
MIBG showed a curie score of 10, same as last scan. It showed a decrease in intensity in multiple areas. There were no new areas of disease and no growth. These results are what we needed to see!

We know a large amount of her disease matured rather than died off. So, a MIBG scab cant tell the difference between immature(active) and mature (non-active) neuroblastoma. It just shows all the neuroblastoma.

PET Scan:

The last PET showed 2 neck nodes that had an suv of 3.5. Those same 2 are now reading in the 6's. However, she has a cold right now. Her nose has been running like a faucet.

A PET scan just shows activity. It doesnt know the difference between cancer and virus.

The report also noted that they couldn't visualize the lungs well, and that a CT is recommended.

What the scan DID say was when theybconpared the PET scan(that shows activity) tonthe MIBG (that shows neuroblastoma) not ONE area lit up on one that lit up on the other!!!!!!🎉🎊🎉🎊🎉🎊

That means that none of her spots on MIBG are active cancer. Praise God. Insert all my happy tears here.

This is the best case scenario for my girl (for these scans)🥰.

I havent talked to her doc yet about the PET but these scans should be good enough to move on to their Neuroblastoma Vaccine trial, which we were hoping to do. One of the main requirements is that you have to essentially be considered in remission.

Hoping they consider her in remission despite the brain MRI. She will likely never be considered No Evidence of disease. Mature disease often just stays. But, I will take a "NEAD", No evidence of active disease.

So,now we wait for bone marrow biopsies to come back. Prob tuesday, or wednesday. Last piece to her puzzle. But things are looking SOOO GOOD for my girl!

Now, following scans, my prayers change but theyre still the same. May God pull me close and may I lean on him even in the good news. Praising God for good results. Only by His hand does Hazel thrive. 🥰

07/07/2026

05/31/2026

05/22/2026

FRIDAY FACTS: Diffuse intrinsic pontine glioma (DIPG) is an very old thief. It's been stealing our best and brightest for decades. It still is considered an unmet medical need. About 350 children each year are diagnosed. This cancer rapidly steals children who are mostly between the ages of 5 and 9. It's cruel, it steals them one part at a time, piece by piece. DIPG steals their sight, it steals their ability to use their arms and hands, it steals their ability to walk, talk, swallow, breathe, one part at a time, all the while, the child has full cognitive abilities and knows what is going on. It has less than a 10% survival rate. 90% of those diagnosed will live 9 to 11 months. Moms and Dads are often advised to go home and make memories while they can. In our present decade there have been several clinical trials created on this inoperable brain tumor. While we are making progress, it's slow and not as fast as we wish, we need to keep spreading awareness for all childhood brain cancers. We need more research. Let your legislators know how important it is to provide adequate and consistent funding.

05/11/2026

This photo is exactly how we are both feeling today.

Treatment was long and hard. The pain was worse than it's been and she was way over tired. We've been here since 10. We are both just DONE. Felt like today was a whole heaping mess. Timing of all the things was wonky. She was in more pain than she needed to be and everything was just off. Lots and lots of crying... and screaming... and thrashing. Lots of outside distractions happening on my end that left me not in the best mood to start with. Enough that I may just silence my phone for the rest of my trip👎. Inhaaaallleeee. E###xhhhaaalllleee. 😫😤.

Need someone to just put me out of my misery so I can awaken tomorrow to a new day. Praising God that His mercies are new every day.. I need a new morning. She needs a new morning. Hoping her pain doesn't return. Hoping she doesn't get a fever and doesn't get hives. She needs to be able to rest.

We have a good 15 streets and 2 avenues to walk back to our hotel. Hoping the fresh air does us both well! Hopefully we get to leave here in the next 20 mins or so.

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