Eli’s Fight with AML Leukemia

11/03/2025

For most people it’s out of sight, out of mind. If everyone knew how horrible it is, we would be putting a lot more effort into finding cures because there’s not much else worse I can think of than having your child’s life slowly wither away and than watch the life go out of them as you feel them die in your arms 💔

Imagine this. You’ve just been told your child is seriously ill. You drop everything work, home, sleep and move into a hospital room.

Days turn into weeks. Weeks into months.
There’s no mental health support. No financial help. No food provided for you.

Just a half-sleepable bed beside your child’s if you’re lucky. Many parents sleep on two chairs pushed together, or on the floor.

You try to work from the ward so you don’t lose your job. You watch your child go through pain you can’t take away. You’re told to “be strong.”

But what would you do?
How long could you survive like this physically, mentally, emotionally?

For thousands of parents, this is not a story. It’s their life. Every single day.

🦋 It’s Never You because until it happens to you, you can’t imagine it.

11/03/2025

I feel this 💔

“I Didn’t Feel It Break”

I didn’t feel it break
not the way people think.
It wasn’t one big shatter.
It was slow.
Cruel.
A ripping from the inside out.

I was still breathing when it happened,
still standing,
still moving,
but something inside me
was screaming so loud
the world went quiet.

My heart didn’t just crack
it splattered.
It burst under the weight of a name
I still whisper every night.
His name.
My child.

I tried to hold it together,
press the pieces to my chest
so I wouldn’t lose another part of him.
But it cut me
over and over again.
And the blood isn’t blood anymore
it’s memory,
it’s pain that never clots.

They say time heals,
but time only reminds me
how long it’s been
since I heard his voice.
Healing?
No.
I just got better at pretending.

People look at me
and see a mother surviving
but I’m not surviving.
I’m haunted.
I walk around holding a heart
that’s no longer mine,
just the remains
of what love looks like
after it dies.

And every shard that falls
still bleeds his name.
Every piece still screams,
“I miss you.”

Written by: Marlena L Bowdery
Many Phases And Faces Of A Mother's Grief

10/17/2025

Never take your kids for granted. Even during the worst temper tantrums, just remember to be thankful that they’re healthy. Some parents aren’t so lucky and would give anything for a healthy child, even if they can be a brat sometimes 💛

After hearing from the doctor that her son Léo’s cancer could no longer be treated — that no therapy was working anymore and the only goal was “to keep him comfortable until the end”… Claire went to his room.

Léo was sitting on his bed, watching videos on his tablet.
She sat beside him, rested her head against his, and they had this heartbreaking conversation:

— Me: Breathing hurts, doesn’t it?
— Léo: Uh… yeah.
— Me: Does it hurt all the time?
— Léo: (looking down) Yes…
— Me: This cancer is awful… You know, you don’t have to fight anymore.
— Léo: I don’t have to? (with a small smile) But I’ll keep fighting for you, Mom!
— Me: No, sweetheart… You’re doing it for me?
— Léo: Well… yes.
— Me: And what’s a mom’s job?
— Léo: To protect you! (with his big smile)
— Me: My love… I can’t protect you here anymore. The only way to do it now is from the sky. (My heart shattered.)
— Léo: Then I’ll go to the sky and play while I wait for you! You’ll come, right?
— Me: Of course I’ll come! You know you can’t get rid of Mom that easily!
— Léo: Thanks, Mom! I’ll play while I wait for you!

That was their last real conversation.

In the hours that followed, Claire never left his side.
They played, laughed, watched videos, and fought the “bad guys” with their toy guns.
They made the most of every moment.

An hour before he left, he snuggled into her arms again and told her how he wanted to be remembered:
— “As a policeman.”

A little later, Claire went to the bathroom.
When she came back, Léo was sleeping deeply.
His little body had given up.

But in one final breath, he opened his eyes, smiled, and whispered:
— “I love you, Mom.”
Then he closed his eyes as Claire softly sang into his ear…

Léo passed away at just 4 years old, in his mother’s arms, after a brave fight against cancer.

The photo shared isn’t just one picture — it’s two.
In the first, you see Léo lying on the bathroom rug, waiting for his mom to finish her shower.
In the second… the same rug. Empty.

Just a silent rug… where a perfect little boy once waited for his mom.

If tonight your child is near you,
put your phone down.
Forget what you’re doing.
And give them the longest, warmest hug. 💛

10/01/2025

💛💛💛💛

President Trump signed an executive order on Tuesday aimed at using artificial intelligence to improve research and treatments for childhood cancer. The order builds on a 2019 database established …

10/01/2025

This is so exciting! I’m so glad he’s still pushing to establish the Childhood Cancer Data Initiative that he originally proposed in 2019! As a pediatric cancer patient’s parent, I strongly feel like this is something that is so badly needed to speed up treatment options and find cures 💗

Executive order being signed to double the funding to support pediatric cancer.

WASHINGTON, Sept. 30, 2025 — The U.S. Department of Health and Human Services today announced a doubling of funding for its Childhood Cancer Data Initiative at the National Cancer Institute. The funding surge is designed to accelerate the development of improved diagnostics, treatments, and prevention strategies.

President Trump in 2019 established the Childhood Cancer Data Initiative to collect, generate, and analyze childhood cancer data. Its budget will rise from $50 million to $100 million, giving the federal government stronger data for this effort. The initiative will also bring in private-sector partners to apply advanced artificial intelligence to speed up cures for pediatric cancer.

https://www.hhs.gov/press-room/hhs-doubles-ai-backed-childhood-cancer-research-funding.html

09/28/2025

Today was a tough day. We introduced Lily to her big brother up in heaven. I hope the beautiful golden sun was Eli telling us how beautiful he thought she is 🧡🌅🧡

👼

09/22/2025

Eli sent us down from heaven the most beautiful baby girl. At only 12 days old, we have already seen glimpses of Eli through little Lily. She has filled our hearts and we don’t feel like we could be more in love. She is just so perfect 💗

Lillian Marie Dienst
7 lbs 14 oz 21.5 inches
Born 09-09-2025 at 3:06 pm

07/14/2025

So many prayers needed for sweet baby Hazel 💗

Test Results.

Mixed Response. Hazel's CT showed decreases in a few area's of disease. I was thankful it showed a small decrease in the disease in her ovaries. The CT also showed an increase in five seperate lung lesions.😔 It also showed a possible spot of new disease. Thankfully, the PET indicated that it likely not new disease but unopacified bowel. Her bone marrow biopsies were atill positive. Greater than 50% disease in one side and greater than 30% disease in the other. 😔😔😔.

The weight feels heavy. Knowing there wasnt a good response to such harsh chemo. Knowing her a few of her bones are showing deterioration. The cancer is eating the bone away. Like tiny Holes. 😭😭.

Ive asked to do chemo-immunotherapy. Ive been told no. 😔. That they would like to try another chemo combination that is very harsh, but usually effective before adding in immunotherapy. Im honestly just so torn. If we want immunotherapy sooner, we would have to switch hospitals, which would delay treatment. No one wants that either. CHOP says theyre having issues with insurance. Wanting to add: her doctor says immunotherapy has potential for more long term side effects and doesnt know if she will even need immunotherapy.🤷‍♀️. I just know that immunotherapy if a good therapy for boney disease, mostly. So mixed with chemo, its a double hitter.

Stuck between a rock and a hard place. With so many dropped balls this week, my confidence wavers. Is it worth it to travel all this way? Should I keep reaching out to different facilities? More expert opinions, more options? I checked St. Judes website. It does indicate that you need to qualify for one of their trials. I may call them monday, just to verify they have no options. Tons and tons of comments about St. JUDE. Its not that simple. You have to benefit their trial numbers. They dont take many patients. It is very very selective. I really like our NB team here but... this week has me wondering if its worth the issues we have come across while inpatient.

I wanted to add that the inpatient team is different than her Neuroblastoma team. So the mistakes that were made, were not at the hands of those making decisions on her treatment. That is a large part of my hesitation to even think about moving treatment. 💜

We just were discharged from the hospital. Tomorrow we have to go in for antibiotics. Tuesday we have Brain MRI and antibiotics. Wednesday, she has surgery to put in her port (unless they can move it earlier in the week). So, we are out but not for long because treatment will be inpatient because the infusions are so long. Last I spoke tonher oncologist, Dr. Kushner, he wanted her to do ICE. Which would be 5 days, and then rescan. To be honest, im not feeling like this is the right treatment. Her bones hold the highest SUV on the PET scan. Her bones are being eaten away at. 😔😔😔. I even asked if we could do them together. He says no. She might not need immunotherapy. I just dont know how that would be because im not going to continue to give her higher dose after higher doses of chem. I'll give it one more shot for the strong chemo. Thats it. I feel like ive wasted the last 5 months on treatment that hasnt really worked. All.the traveling, the planning, the hassle, for nothing. 😭😭..to see a .2cm decrease here or there.

I dont like rare. Her case is so rare. Its unchartered waters, so there os no roadmap. This makes decisions that more difficult.
In the last 39 days, we have spent 8 outside the hospital. And 2 of the 8 were days we had doctor appointments. 😵‍💫😵‍💫😵‍💫.

I just need to start seeing positive change on her scans. Leaving my babies. My 2 year, titus, tried to convince me thw whole way to the airport, to.let him come. "Iwas to come to the hospital", "I want to come with you, mom", "I want medicine", "I want to be sick" .... guys, this has to be worth leaving them. 😔😭.

Please pray for her. Pray for us. It has been a hard road lately. Trusting in Gods timing. Trusting that his hand is in. 💜🩷🧡

💜💜💜💜💜💜💜💜💜💜💜💜💜
Amazon Wishlist: https://www.amazon.com/hz/wishlist/ls/ZLLSVPEUD8QA?ref_=wl_share

Paypal: https://www.paypal.me/TheMorrisseyFamily

07/07/2025

Eli 🧡

I’ll find you in
another lifetime

Though our time together
was cut short , the bond
we shared was timeless
and unbreakable

Somewhere, in some other
world or time, our souls will
reunite in a place where we can
continue the journey we began

Until then, I will carry your
memory with me, treasuring
the moments we had

In every sunset,
every gentle breeze,
I’ll look for signs of you ,
knowing that love transcends
the boundaries of time

I’ll cherish the memories we
created and carry your love with me,
knowing that in another lifetime,
we are destined to find each other
once more

I love you

Until we meet again …

Helen Lapierre
Hello to Heaven

07/01/2025

Please consider donating plasma. When Eli was in the hospital, there always seemed to be a plasma shortage and he needed it to stay alive! It’s a great way to earn extra money and help save lives! Depending on your location, earn $50-$70 each time you dontate and you can donate up to 3 times a week! There always seems to be a national shortage and is needed much more desperately than blood!

I did this throughout college and felt good that I was helping save lives and made some money on the side too! Check if there’s a location in your area.

07/01/2025

Oh Hazel, please pull through this 🙏. If your blood type is A-, please donate platelets. There is a national shortage and Hazel and many others desperately need them!

Update: She did get platelets in the middle of the night!

A long day.

Hazel has a blood infection. Staph Aureus. It showed up in one of her two lumens of her broviac. 😔. To treat it, they are giving her very strong antibiotics.

We did a ct today to check for any infections in her colon. While she doesnt have an infection in her colon, she does haev a substantial amoint of free fluid in her abdomen. It is pretty hard. And pretty painful. Distended.

We did an ultrasound of the fluid to make sure it wasnt due to issues with the liver. Doc said he doesnt believe it is from the liver.

Did a heart echo to make.sure the infection didnt travel to her heart. It was fine.

They are contemplating pulling her broviac. They said this type of infection is typically hard to get rid of.

They are also wanting to stick a needle.in her abdomen to pull some fluid out to test to see what the fluid is. Is it infection? Is it excess fluid? Is it due to her lymph nodes leaking from surgery? Is it blood?

Since her platelets were 3k yesterday, and only 21k today, they want to up her platelets to over 50k before they even think about going in with a needle. Unfortunately, there are no.platelets nearby anywhere. They are searching nationally. 😱. I asked them how long it takes to process plasma and pull of platelets. She is supposed to ask blood bank. While no one can donate directly to her.... if a few people donated, it would be available locally and therefore they wouldnt have to keep searching nationally. 🤔🤔. She is A negative. They said it would take longer to process a donation locally than it would to seek them out nationally, however, if she would need a transfusion later this week, it would likely help! You cannot make durect donations, but if there are no platelets locally, and then some are donated...and if she needed them, they would pull local first.
Blows my mind that its THAT hard to find. 😔. Her platelets likely wont be rising on their own until later this week, at the earliest. So, she will NEED more transfusions before that.

Truthfully, if you are A negative, please contemplate donating in your area. If its not Hazel that needs them, it could save someone elses life. I know its time consuming to donate but this is a way to save a life. Think about that for a minute. You could be the one person in your area to give someone like Hazel the platelets she needs. 💛

The doc wants to give her lasix to pull some fluid from her but we cant until she gets platelets. 😔

On a good note, her white blood cell count was "less than .1 yesterday and today it is .1". So, hopefully she is on the upswing. 👍. Hoping she has an ANC by thursday.

Hazel is swollen. Her feet. Her face. Her belly. All of it. This is a whole new pain source. 😔. She is finally wabting to eat but the fluid puahing on her belly makes the milk seep back up. 😔. She isnt throwing up and the diarrhea has, thankfully, stopped. She has eaten today and held it down. This is a huge answer to prayer.

Her heart rate has come down from 180/190s to 130s/140s when she is resting.

She was feeling better today with antibiotics. But then also feeling worse because of the fluid buildup. Feels like we take one step forward and another back. 😔😔😔. She is still sleeping alot and not very happy when she is awake. I wouldnt be either.

We are still in ICU. I hope this fluid somehow reabsorbs to be peed out... im not sure how she is supposed to get rid of it.

Update: She has gained 3 lbs in just fluid😭.

I didnt want to leave you all in limbo all night.

Thank you for praying for her. God is answering prayers! 💙 Keep praying! 💛💛💛

Thanks so much! 💜 Sam

06/30/2025

Hazel isn’t doing well. I just wish that I could help all these babies who are suffering from pediatric cancers and other horrible illnesses that cause them so much pain 💔

Please keep her in your prayers 🙏

Apprently it was decided that playing the nausea vs nutrients game was too uneventful.

Rewind 48 hrs. Hazel was throwing up EVERY time I gave her oxy. Within 15 seconds. Dry heaving for... 3 or 4 minutes.

Then last 36 hrs, she is so so crabby and doesnt want to hold much down. She starts vomiting up her meds and milk.

Last 20-ish hrs, she's a wreck. Decides she is in too much pain to sleep. Cant give oxy because it makes her so sick. Tylenol isnt cutting it. Has a temp 99.2. Thrashes her body around and cries pretty much all night. Holding her head as if she has a migraine or terrible headache...ALL NIGHT.

Last 12 hours. Doesnt hold anything down, including all meds,.. but now is also throwing up clear liquid. Constantly, even when she doesnt consume anything.

Last 4 hours. Spikes a fever. 102.2. Head to the hospital. Super crabby. Wants to just sleep. Keeps her eyebrows constantly furrowed. Get to the hospital and her bowels decide they want to join in. 8 or so diapers within 2 hours. Heart rate above 200. She is not herself. At all. She is super sick.

Labs were drawn. Cultures of her line were drawn. Her platelets were 3k again and hemoglobin was 6.8. She needs both red blood and platelet transfusions.

Based on symptoms and presentation, a septic alert was called. 😔😔

There is no infection identified yet but, guys, so she is sick. She cant eat. The minute she tries, she instantly starts gagging.

They've moved her up to the ICU. Not really sure what is going on with her but definitely something. Ive asked for a ct or mri. Something of the brain. Likely wont happen until tomorrow, if at all.

Addressing the need for IV nutrition since she cant hold anything down.... doesnt make sense to put in an NG tube. 🙄.

When we got here, she wasnt dehydrated. I had been syringing pedialyte to her every now and again in little amounts. So thankfully, some of that did get into her.

Hoping this is a fluke 24 hr bug. And that after blood products, she perks up. I hate having to see her like this. Im not a crier and ive been on the verge of tears pretty much all day. I just want her to feel better. Cancer aside. I juat want her pain free. Period. She should not have to writhe in pain because she is dry heaving for minutes. 😔😭😢😰

She is still neutropenic (no immune system... at all). Hopefully that'll start rising by weds/thurs.

So for now... I am here. Studying the shape of her disappearing eyebrows, the color of her hair, the budding teeth that are coming through, the way she feels, all of it. Soaking it all in. 💔

💜 Please for Hazel. 💜

💛💛💛💛💛💛💛💛💛💛💛💛💛💛

Adding in Amazon wishlist for those that messaged and asked.

https://www.amazon.com/hz/wishlist/ls/ZLLSVPEUD8QA?ref_=wl_share