Addy Joy’s Hope Foundation

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.

💛💜💛💜💛💜💛💜💛💜💛💜💛💜

05/07/2026

Tomorrow is Bowen’s next MRI. This scan is to check his fluid levels and monitor the brain bleed they’ve been watching closely. It shouldn’t be as long as the typical MRI since they’re not adding contrast. We are praying hard for healing of the bleed, stabilization of his fluid levels, and continued protection over our sweet boy.

We know every good report is a blessing, and we’re holding onto faith, hope, and the power of prayer. Please keep Bowen covered in prayers tomorrow.

04/27/2026

Amazing news for Hazel!

I know its been quite a while since the last update. I was hesitant to post until I heard a "for sure" plan from the team. Leaving, NY, I was told we were done. Done with both chemo and immunotherapy.

However, late last week, her oncologist called and expressed that the team decided they actually want her to complete 2 rounds of JUST immunotherapy. This round, the week following mothers day, will be immunotherapy and a Brain MRI.

And then the next round would also be a full set of scans. If those come back the same or better, we will officially move to relapse prevention!!!

However, for now, we are DONE WITH CHEMOTHERAPY!!! 19 rounds of chemo in 14 months🥴. This is a HUGE milestone!🎉🎊

My girl gets to keep a functioning immune system, she gets to start growing hair, she is done with the toxic chemo that tears apart her digestive tract. 🥰🥰🥰.

Immunotherapy will still fight any disease that could be left in the body. However, it does not break the blood-brain barrier. The brain lesions are the most puzzling spots of disease. We just dont know their status. So these next few months will be SO SO important.

If you could smother my girlie in prayer, we would be so grateful. Please pray that God heals her fully...and That the spots of disease in her body are not active. Our God is a mighty God. 💜🩷. We are praising God for seeing her through so far.

We are so thankful to have you all walk this with us the last 14 months. Feels like alot longer than that🥴.

Otherwise, Hazel is eating well, still taking GTube feeds at night. She is slowly building strength. Hoping her walking will take off soon!

Hazel and her bubba, Silas. 🥰

04/25/2026

We are so sorry it has taken us a little while to update everyone. Today was a very long and stressful day. We arrived at the hospital at 10am and didn’t make it home until 7:25pm. Thank you all for your patience, prayers, and continued support.

Praise Report:
• Bowen’s MRI showed NO growth! We will have exact measurements in a few days but for now, this is huge! 🙌
• His previous brain bleed has healed nicely
• Clinically, they said he is doing well. They are very happy with his lack of symptoms.
• We were encouraged to keep doing exactly what we are doing

Update:
His shunt has been adjusted to a level 7, which is just one setting from being turned off. His MRI did show that he is still experiencing some over drainage, and there is a new brain bleed that they will be monitoring closely.

Prayer Requests:
• That the shunt adjustment corrects the over drainage
• That this new bleed heals quickly and completely
• Continued stability and protection over Bowen

We will go back in 2 weeks for a rapid MRI to recheck the bleed and fluid levels.

We are so incredibly thankful for no tumor growth and for his overall health. God is moving, and we are holding tightly to that. Thank you for standing with us, praying over our boy, and believing with us. 💛

02/13/2026

😡😭😳😱😨.
Im so done.
Can I stop playing this game of Jumanji yet?
Those are all my emotions at this very minute.

This morning we showed up at the hospital to start her last day of immunotherapy. Normal day, grabbed my coffee on the way... Hazel was in a kind of crabby mood but eh. She was still playing.

Got our Methadone in, then our Zytrec, Palonosetron and our Hydroxyzine. Started the Ketamine pump.

Waited an hour to make sure the meds are in and she was FEELING IT.

I asked the nurse if we could change Hazel's dressing on her central line before treatment because she is super crabby and sleepy after. She said that they wanted to wait until after because if she gets sweaty, then it wouldn't last as long. Whatever, wasnt going to argue.

So, we are ready to go. They come in to start hooking up her immunotherapy. While situating and flushing lines, Hazel screamed... it was clearly a hurt scream. I told them that she has stiches on her central line, you cant just pull it upwards and I pushed it back down. Well, it was too late. She ripped the stitch out.

So, already knowing, and upset that we likely we needing to stay tomorrow morning to have the stitch put back in (we were supposed to leave to head home early in the morning), we figured we would continue on with treatment.

The nurse goes to flush her lumen and no blood return. oy. This is a typical occurance for Hazel, her line, since the day it was put in, has always been super positional. No position mattered. No blood. We unhook all her lines, and head down for an xray to make sure it was in the right spot. (mind you, we aligned her treatment with her nap... so she is super doped up on meds and super overtired.... and very very difficult)

Crud. Its not. The line was pulled hard enough that it pulled out a little and was no longer central. I want to add in here that Hazel was sitting still while they were flushing, she wasnt crazy at that particular moment, she wasnt climbing, she was sitting and watching her cartoon.

So.... now... We get to be home for a whopping week and a half. We need to come back early to have surgery to have this line pulled and a new line (probably a port) put back in.

With no blood return, the team decided it was best to forego this last day of treatment. Day 4 of 4.

I know this nurse is a great nurse. Ive known her for almost 10 years. She cared for Elijah during this same treatment. But today was a big fail. Had they listened to me about changing her dressing before treatment, this likely wouldve all been avoided because her sutures wouldnt so easily have been ripped out. Also, had they been careful about her line and those stitches (they do this every day, all day...) then her sutures would be entact. This doesnt change that she is a great nurse. I just wish theyd listen to parents more.

We have had too many "oopsies" happen throughout the course of her treatment. Way too many that couldve been avoidable. It causes HER more trauma. More scans, more anesthesia, less time at home. and and no treatment today.

6 hours at the hospital for absolutely no reason. Thankful to have a great NP who gets things done.

11/23/2025

Praising God for Answered prayers! 🥰

It turns out that Hazels culture sample was contaminated. The staph bacteria that her blood tested positive for did not come from her blood!

Her repeat cultures right before we started high doses of antibiotics have not come back positive. (Tech we still have until 6:30pm but.... now, the risk drops the single digit % likelihood).

Not happy that she had to get unnecessary antibiotics but, so so so so very thankful we were able to get discharged this morning and we do not have to go to NYC a week early... no pulling her broviac, no new surgery.

This is the best case scenario, right in time for Thanksgiving. 🥰🥰. Praising God!

🧡💛🤎🧡💛🤎🧡💛🤎🧡💛🤎🧡💛🤎

Her cold is still pretty j***y. Her lungs were sounding hoarse but her oxygen levels were in the mid to low 90s while sleeping. When she coughs, she clears alot of the mucous and her lungs sound a bit better. Still praying it doesnt turn into pneumonia!

Her stool also tested positive for a bacteria called campylobacter (think I mentioned this in my last post). So, her gut is an absolute wreck. 😔😔 between the bacteria and the added antibiotics. She will start a whole different antibiotic today for the gut bacteria, to prevent it from traveling.

Really though, she feels good. She isnt super crabby. She is playing and smiley.

Im just so thankful for Gods provision for her to be home. 🥰🥰🥰.

Thank you for your prayers!

This Thanksgiving, im especially for the little things. The things that are easily taken for granted. A hot shower, sleeping in your own bed, not having to walk to a whole other location to have good coffee....

Aside from family, friends, and health...What are you thankful for?

11/21/2025

😭😭😭😭😭

I am not winning this game of jumanji.

Well, Monday, cold symtpoms showed up in Hazel. Super j***y cough. Nose was snotty.
Tuesday (tech Wednesday), she spiked a fever around 5:30am. But it went away on its owne, without fever meds when the sun came up. (I have no idea why).

We had a clinic appt on Wednesday anyways, so.I asked them to run a viral nasal swab and some blood cultures.

My girlie has Human Metapneumovirus. So, yeah, a nasty cold.

Fast forward, as Im setting up for our churchs Annual Fall Party... (the ONLY event that I help run every year).... and my husband calls to let me knot that Hazel's blood cultures came back positive for TWO infections. 🥴🥴🥴. Best guess is that the infection was introduced in the ER on sunday when we went for TPA😔. Im kinda holding out hope that the sample was contaminated and that it actually isnt an infection 😬

Its crazy because she looks well. Yes, she has a cold but she isnt crabby, she isnt clingy, she just Hazel with a few symptoms. I was shocked. Really.

So, this throws a wrench in ALL our plans. We are admitted for who knows how long. Talked to MSK and they said her central line can get taken out. Not sure how long we will need antibiotics, or when we could switch to oral...

Msk moved up our arrival date by a week so she can have surgery to put a new central line in. She also will need to be admitted in NYC to start the TPN process all over again. Her TPN cannot be given with an active nlood infection AND that requires too many days off TPN. So we have to start that process all over😭😭😭.

My poor titus boy was SOOO upset. He just kept telling me to stay. To get back in the car. To go home. That he loves me so much.😭.

I juat wanted time home. So excited for our extra week we had. Now that taken away AND we get to spend however many nights in the hospital here.

Feeling discouraged and just sad.

Tim took next week off so could be together for the week. Planned on possibly going out of town as a whole. 👎👎👎.

Please pray for Hazel Girl. Pray it was just a fluke. We recultured. Pray those come back clear! Pray for her cold...that she would quickly heal and that it wont turn into pneumonia. Pray for her body. She is now getting strong antibiotics and they like to wreak havoc on her gut... that wasnt healed from chemo yet😔. Pray for her appetite and fluid intake..without TPN. She will need to pick up the pace with eating.

She will lose some weight. They said its expected. Please pray she doesnt start losong significant weight. 😔.

So many things. Thank you for praying for us.

Pic of when we were in on Wednesday.

10/03/2025

September may be over, but childhood cancer lasts all year. Let's work to change the stats.

Donate today, because kids can't fight cancer alone!®: https://www.acco.org/donate/