Jireh's Journey

09/03/2026

💛 CHILDHOOD CANCER MONTH 💛

Trying to describe childhood cancer in a way that people can truly understand is a tall task.

The closest comparison I can make is losing someone you love. Over time, the pain may become less sharp, less consistent but your heart never quite beats the same way again.

Childhood cancer takes the most innocent years of a child's life—tummy time, playtime, learning, growing—and replaces them with hospital rooms, chemotherapy and needles.

Instead of bribing your child with chocolate or tablet time for a sliver of peace while you're out to dinner, you're doing so while holding them down while a 3-inch needle is jabbed into them to draw blood and they are screaming mommy HELP ME as tears stream down both of your faces because you have LEARNED how to exchange what's needed not what you WANT which is to scoop them up in your arms making them feel secure because they have to stay STILL.

Surviving starts living in a world of:
“Is it coming back?”
A fever.
A weird bruise.
A doctor's appointment.

All things that can take you right back to the beginning—the beginning where you knew something was wrong, but were turned away because no doctor thinks “cancer” when looking at a baby. It's met with come back next week if things persist.

It's kind of like losing someone you love and seeing a picture of them or looking out at the ocean that suddenly reminds you of them.

The wound isn't as jarring as the initial shock, but the trigger is always there & forever painful.

I'm incredibly grateful that Jireh's story continues to be positive. But his treatment doesn't simply disappear from our lives.

He is still monitored closely for five years, and after that he'll be followed for the rest of his life because the chemotherapy that saved his life can also have long-term effects on his body including a higher risk to develop other cancers later in life.

And that's something I wish more people understood:
Surviving childhood cancer isn't the same thing as walking away from it untouched.

Some childhood cancers still have devastatingly poor outcomes.

Milly. Cordelia. Nina. Santiago. Lorenzo. And so many others.

We met these families on our journey, and their babies died from the same exact diagnosis Jireh was fighting. We swapped stories. Not about preschool but about emergency room visits, side effects, treatment complications. Relapse. Clinical trials. Hospice. Death.

They deserved more.

And the kids who survived deserve more, too.

More research.
More funding.
Better treatments.
Better long-term options not hand me downs from adults just lowering dosages.
Because these kids are superheroes.
And superheroes deserve more than the 4% our government is giving them from the cancer budget. 💛

Nonprofits and families are working tirelessly to fill the gaps in research funding, support and bring awareness. And while I'm grateful for every organization fighting for these kids, it shouldn't have to fall so heavily on families and nonprofits to push childhood cancer forward.

Soooooo.... Getting involved is super simple for the month of September:

🏎️ Jireh is being honored in Indianapolis to draw awaresness with his name on a RACECAR which will help the childhood cancer community.
You can donate any amount to his PR1 racing team here:
https://secure.qgiv.com/event/resilientracers2026/account/2382822/

🩸 Donate blood or plasma.
Basically, anything that sticks in your arm and takes something out. 😂
I cannot even tell you how many infusions Jireh received that literally helped keep his body alive while he fought cancer. Without them, he wouldn't have survived. You can even get PAID to donate plasma.

🍔 Eat some GRUB!
https://www.facebook.com/share/p/1EhCYCY29g/

💛 Buy some cool childhood cancer awareness swag.
https://curechildhoodcancer.org/

🏫 Ask your school: What are YOU doing to build awareness?
https://rallyfoundation.org/blog/childhood-cancer-awareness-month

You don't have to do everything.

Just do something.

Because honestly, the words “childhood cancer awareness” kind of irks me.

Let's not just be aware.

Let's engage. Somehow.

Donate. Give blood. Buy the shirt. Attend an event. Ask your school what they're doing. Share a story.
Shoot, even round up at McDonald's for Ronald McDonald House or Panda Express for CHOA.

Because that 💲CHANGE 💲 is funding change.

And funding change is how we get better treatments, better options and better futures for these kids.
Because these kids deserve more than surviving.

They deserve a future. 💛

08/08/2026

Today marks 6 months from Jireh being off chemotherapy! Here’s some milestones we have met during this time:

- Jireh rang that bell and celebrated his 3rd birthday.
- He is enrolled in in-home daycare and we are looking to enroll him again in a preschool program for this school year two days a week as that is what his private speech therapist had recommended.
- He continues to go to speech therapy in the traditional school system now since he is three followed by a program called Play to Learn once a week. He is still behind in speech but steadily progressing. He speaks “Jirehish” according to our in-home daycare provider which is hard for people not close to him to understand.
- He is on his growth curve and has not fallen behind due to treatment.
- His immune system is back in full swing, we are no longer taking prophylaxis antibiotics. His immune system is coming “back online” in what they call a hyperactive way meaning his body is freaking out and rejecting any little thing so for the past month or so we have been dealing with hives out of nowhere constantly. We have been advised this likely will continue for the next few months and are treating it with OTC meds. If it continues past this we will talk then about consults to an allergist or immunologist.
- At our next appointment we will discuss a re-vaccination schedule as treatment typically kills off any previous vaccinations and he is not allowed to receive any during treatment.
- We continue receiving “small pokes” at the hospital now instead of “big pokes”. We have now shifted from once a month visits to every other month hospital visits.
- He is not afraid in the least bit of water now and is “diving into the deep end”. He went to the zoo for the first time and can stand like a Flamingo now. He also enjoyed his first trip to an indoor jump spot and it’s now one of his favorite spots. Mimi is also taking him to gymnastics every week. Being normal and visiting these crowded places is a blessing.
- We are potty training! We still have a ways to go but as long as he is sat on the potty he is using it.
- Roc Solid Foundation partnered with Manhattan Construction Company who came out and built a playset for Jireh in the backyard in which older brother might be enjoying just as much as he is. https://www.facebook.com/share/p/1BYSQ4ZFKA/
- We have been invited to a cancer event supporting childhood cancer in September and flights have been booked. More to come on this once official announcements have been made public.
- We are in the application process for Jireh’s Make A Wish trip and have decided on Disney.
- Jireh will be sponsored on the CureFest wall this year again. It is heartbreaking to see updates from last year to this year how much this wall has expanded as every bit of that over 1,000 foot expansion signifies another kiddo who has fought.
- We have not been booted off the medical insurance here in GA that has paid for almost every single bill of Jireh’s journey which is such a financial blessing. They are behind in reviewing applications and although we started at our February deadline we still have yet to hear back so it continues on!
- Trevon, older brother, graduated high school with the Hope Scholarship, continues to work at Starbucks and will be starting college next week. He paid for his own first semester of college taking pride in financial independence as he pursues a major in finance and went on two senior trips to Florida and Colorado.
- Kaydon, older brother, has found a school that will likely be a better fit for him and started this past week. Unc is bribing him with a new skateboard if he does well this first mini semester. He also got his learner’s permit and is starting to drive and turned the BIG 16. In honor of his sweet 16 we went and did 16 things just him and mom, something that had been planned to do with Trevon and interrupted at Jireh's diagnosis. It was a special time where he felt like he was the king of the world on his "Yes Day".
- Mom started counseling with an organization called Austin Hatcher who offers free counseling to those in the pediatric cancer community. She also went on a trip with an organization called a Mother’s Rest which gives lower rates for stays for those families with medically complex kiddos or foster parents, ect. Her vision of starting a business to give back is underway and patent pending.

Thanks for all your continued support, be thinking of us as Kaydon embarks on this new school pathway and learns to drive, Trevon starts college, mom starts putting business puzzle pieces together in her spare time and that Jireh continues to meet milestones in speech and his immune system starts to chill out so he can stop being “itchy” constantly.

Continue to keep the community in mind from those currently fighting, those who have gained their angel wings and those who remain in remission and rebuild their lives.

04/05/2026

Ji rang that Bell!!!! 🔔🔔🔔

I want to thank everyone who took the time to come out and celebrate our journey. It was exactly as I had hoped, low key and people coming and going sharing the love as their schedule allowed and I am so grateful for the outpouring of support. The only wish would have been I was able to visit one on one for longer. 💓

I also want to apologize for the late post thanking everyone. Despite the celebrations and festivities that were happening, mentally my state of mind was tied back into the cancer world so I have not had the guts to post this until now for fear of maybe "jinxing things" and as such I feel like I owe somewhat of an explanation/ apology but also a sense of awareness into the cancer world and the true anxiety as a mama it causes.

We were advised due to fever to go to the hospital on 2/8 which was three days prior to our ringing the bell ceremony. As I walked into the ER I almost blacked out. We were diagnosed to the day the same day we were there for a fever. I felt my knees buckle, my vision become cloudy as I heard a baby screaming in the waiting room. It all brought me back to ground zero to the day just fast forward two years later.

As I trudged back to the room Dad and Ji were waiting in my emotions had already spiraled. The blood had been drawn, cultures ran, viral swabs taken, antibiotics started and again here we were in this waiting space three days before the festivities. We were wheeled back for X-rays just like we had on diagnosis day. The ER doc in the wee hours of the morning happily walked back in after testing stating we were stable, time to go, it was just RSV.

From my face I could tell he knew I thought this was the worst news we could ever have. My heart sank, the room went dark. His voice felt like a small echo that I was trying to hear but couldn't fully. That's because RSV is what started our diagnosis. I was living Deja vu to the day. I had already planned for our possibility for relapse given our high risk diagnosis but what I hadn't planned on is the exact symptoms that started our diagnosis resurfacing. That trigger didn't compute in my world. I started asking further questions, asking about lab results he was showing me. And what I ultimately learned from that engagement is the ER is not the cancer world. He didn't know what it meant for some of these levels to be wonky from the last time labs were drawn, he didn't understand the impact it had on me. He was merely a person looking at my son triage wise and saying he's stable. There's nothing pressing right now. Maybe for a normal person that would give them peace.

That meant our ring the bell date that was supposed to just be this huge celebration, was the deep dive for me with the oncologist after the ceremony about what we had seen three days prior. Why had our counts dropped with the three bloodlines that gave us our original diagnosis? Are we waiting for the next shoe to drop? The ring the bell date was for me somewhat robbed. The party turned into the silent scream I hope we aren't entering this again. And the waiting pursued.

We went in the next month for lab draws and everything was even more weird. We had 20% abnormal cells when at diagnosis we had 36%. We have NEVER had other cells that high for the past two years. As a cancer mom you start to learn patterns, you understand blood work and that blood work I knew was "wrong". Because of that labs were sent to pathology, that was not a "me advocating it" it was a "this is not normal" procedural sending it. Pathology are the people that basically look at things manually when something is off from the machine. They flagged it as weird too. Which meant next steps were taken and it was sent off for further cancer testing called Flow cytometry. In context our labs have not been sent off for review for cancer testing since 1 month since we started our cancer journey in 2024. That process was documented in our lab system so I could see it real time. The anxiety was beyond high as we waited for the next lab to result.

What I can share now is that we really did ring that dagum' bell. My anxiety as a mom and understanding lab results can be a blessing and a curse. And what we know at this time is that those wonky labs that have been haunting me since February? Nothing but his body literally 100% healing and that's been proven by the extra lab results we are taking to monitor his immune response. The crazy other cells weren't cancerous, they were his immune rebooting to normal but they were firing off immature cells which was what was causing everything to look haywire in blood work. His blood now almost looks "normal" as of our last labs on Wednesday.

So thank you, I'm sorry if I haven't taken the time to personally thank you in our journey. These past two months have been a what the heck is happening right now so the "joy" from the journey has looked like on the back end a "oh no are we starting again". And that's the cancer world and something I was not prepared to share until we fully understood. My smile looked plastered because it was, the fear hiding behind every hug.

Prayers please for me as I try to navigate the world off treatment and when to call and "bother" VS when to understand my anxiety is taking over the wheel. This transition has been tough. Our oncologist this last visit was amazing and said what I honestly needed to hear from him in that moment, you should have been called when this high level testing was requested and I'm sorry you weren't. I've learned maybe in this transition instead of trying to deal with the weight, talking myself down, having a trigger, talking myself down again time and time again as I saw real time the lab results post it would have been justifiable to just reach out given the high level of testing that was ordered and that would have been not a "bother" but justifiable to cease the angst that our cancer and blood work has taught me to be in high alert for in the past two years.

Here's the beautiful moment that should never have been robbed. Go get it little man! And for those we know still fighting, those that have gained their angel wings I love you and your story is our journey, always intertwined. 🫶🫂✊🎗️

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01/29/2026

OH MY GOSH, SCREAMING FROM THE ROOFTOP! THIS IS THE BEST NEWS IN 2 YEARS FOR OUR LITTLES.

To break it down:

Ji got diagnosed in 2024 right after a study was released in the Netherlands that offered a promising break through for Ji's specific cancer. Relapse rates pre Blina were over 60%. In this study released relapse rates were under 20%. The medical community has been "holding" their breath since 2023 waiting for follow-up data from this trial as the results were still somewhat preliminary with the mean follow-up at 2 years. The follow-up data was JUST released and the rates are STILL less than 20% relapse 4 years later. This means that NONE of the infants that were in remission in 2023 have relapsed between then and now. What this means clinically is SIGNIFICANT we are talking about life altering data. I am not crying tears of joy and years of anxiety. This is AMAZING.

https://www.targetedonc.com/view/blinatumomab-plus-chemo-show-improved-survival-in-infants-with-kmt2a-r-all?fbclid=IwY2xjawPovptleHRuA2FlbQIxMQBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEe93rJ6HtcAn0t-faHx_9ikCqDSZ-lqwViEQ8Ni_IeRrfyw4qEpWtKu09iZIw_aem_lsnjlELYFIxfD7HTSvZNWA

A long-term study reveals that blinatumomab significantly enhances survival rates in infants with KMT2A-rearranged ALL, offering hope for improved treatment outcomes.

01/17/2026

Great news, we had our last chemo appointment on January 14th and we finally came back with blood counts in the right range. Marching right along preparing for our celebration as we move onto our next chapter in this journey. Sneak peak of the awesome video my brother put together for us.

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

01/07/2026

We have DATES! Wednesday, February 11th we RING THE BELL!! Saturday, February 14th we celebrate! Sunday, February 8th we take our last dose of chemo!

We would like to invite anyone who would like to come to the celebration on Saturday to please join us. This won’t be just a time to celebrate Jireh’s end of chemo journey but also the time to spend with friends, family and to most of all thank our support network. Given this is a public page, as I hope if anyone needs to reflect on another’s journey and treatment complications in the future they can find it, we are not publishing the address here. Please send us a message if you would like to join so I can supply this to you. This is a "rolling" open house so feel free to pop in for five minutes or four hours. Your presence is the only thing we would love to have.

Jireh remains stable in our journey. We did decrease his chemo dose at our last visit as our blood counts were lower than what they should have been opposed to holding it all together. We enjoyed visiting family in Delaware over Christmas and the entire holiday season. Pictures to come but mostly this is a formal invitation to please join us on Saturday. Happy New Year!

12/05/2025

It's with a heavy heart that we mourn the loss of another member of our community. This family has experienced grief that is unimaginable as they lost both twins to this wretched disease. In support of their journey I would ask that you simply light a candle, take a picture and comment below with your city and state so during this time they know they have strangers all over the world who care about their journey and they are in your thoughts. If you do not have a candle just drop a line. . If you have not yet please also take a moment to write to congress urging them to pass the bill for rare pediatric funding through the Senate it passed the house. 🙏🏾(https://www.congressweb.com/KVC/14/).

https://www.eltiempo.com/bogota/el-pedido-de-ayuda-de-una-familia-para-salvar-a-bebe-de-6-meses-con-leucemia-aguda-no-puedo-perder-otro-hijo-3440556?fbclid=Iwb21leAOfB-ljbGNrA58HxGV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHs5Ou7nPpxgWTwHATvrebEx9ZC52OiuStd1nHVxuzKe_cs_elvnf7L6a4HI6_aem_YtI46a7FrnBRzFSOFUKcCg

• Santiago Mantilla fue diagnosticado con leucemia linfoblástica aguda. Su gemelo Lorenzo murió en febrero.

12/01/2025

If you have a chance please take a moment to click the link and ask our representatives to support this legislation. I did it last night, it automatically sends notification to your district based on your address.

Time Sensitive! Tonight and tomorrow, we have a critical opportunity to help save the lives of children with cancer.

On Monday, Dec. 1, the House of Representatives is scheduled to vote on the Mikaela Naylon Give Kids a Chance Act. Your voice can make all the difference.
This legislation is named in honor of Mikaela Naylon, a brave osteosarcoma warrior who traveled to Washington D.C. to advocate for this very bill just months before she passed away. Mikaela wanted to make a difference for other children fighting cancer, and now we have the chance to help fulfill her wish.

Here's how you can help:

Please take a moment to contact your House Representative and urge them to vote YES on the Mikaela Naylon Give Kids a Chance Act. It only takes a few seconds, and your message will show Congress that we stand with children with cancer.

Click here to write to your Representative now:

https://www.congressweb.com/KVC/14/

Let's honor Mikaela's legacy and give every child a fighting chance. Let's get this bill passed!

11/25/2025

Looking up to big bubs. 🫶

11/25/2025