Eli M.

Our story begins in May 2023 when Elijah and Luca, my youngest, got salmonella. Luca was the one that got it first but something felt different because even though they both had it, Elijah seemed to be the sickest. It took a few weeks for them to start to feel better.

A few weeks pass by and Elijah got sick again. High fevers, chills, wanting to sleep all day, not eating, and throwing up. A couple days go by and he starts to be himself again and feeling better.

Elijah loves to dance. When he was a baby, sometimes the only thing that calmed him down was putting music on. We always said he was going to become a dj when he gets older. Usually when kids have their tablets they want to watch YouTube or play games, but Elijah would have on the radio music app and just listen to music and dance the entire time. When Elijah isn’t dancing and just sitting down with his tablet in his hand just listening to the music, something is usually wrong. 

My sister and my nephew flew down here from New York to spend July 4th with us. When she got here we noticed that my nephew was sick. By the time it was July 3rd which was only 2 days after she got here, we went to an Airbnb and noticed each one of my kids started to get sick. By July 5th, Elijah woke up that morning with a high fever, very sleepy, and didn’t want to eat. We also noticed other symptoms that were odd. As usual, he was the kid that would stay sick the longest and have worse symptoms but we always thought it was just because he as EoE so his immune system is different.

A week goes by and we noticed the odd symptom kept getting worse so on July 10th I took him to his pediatrician. We got an ultrasound done and we just thought maybe he hurt himself while playing and we all just have the common cold so he can be tired from that. He was also walking funny, but we assumed that maybe the odd symptom he was experiencing was causing him to walk funny due to him being uncomfortable. But something felt off.

Dad and I would be up late at night googling things. Our sweet little baby boy that is usually dancing around the living room, getting into things he isn’t supposed to be getting into, fighting with his brothers, eating all day long turned into a sweet little baby boy that wanted to go to sleep at 6 pm, didn’t want to eat at all even his favorite things, would try to eat and end up throwing up a few bites later, didn’t want to play with his brothers, and would lay down in the middle of the floor a few minutes after finally getting up. I remember picking him up July 11th to play with his brothers and he started crying that he just wanted to lay down on the couch. That’s when dad and I started to get an even stronger feeling that something is wrong. That night, he ate his typical dinner that we know he would eat. After a few bites, he started throwing up. We gave him a shower, and that’s when dad and I noticed another odd symptom. My sweet little baby boy, that was chunky with cheeks, was now skin and bones with a huge belly and sunken in eyes. I remember saying to my fiancé, “it just doesn’t make any sense, he hasn’t been eating and he’s skin and bones everywhere else, but his stomach is huge. That really concerns me”.

On the morning of July 12th, Elijah slept in really late which was odd to us. I walked into his room, whispered to myself “please still be breathing”, saw he was still sleeping, and walked out of the room confused. A little while later he woke up, took one look at me, fell to the floor, and started screaming and crying. I immediately picked up my phone and called the pediatrician doctor’s office and told the nurse on the line “I know that I was just there 2 days ago, but something is wrong with him. He isn’t eating, he’s sleeping all day, doesn’t want to play, and screaming and crying all day”. He just wanted to be by himself. 

Dad was at work so I took all 4 of my kids with me to the pediatrician doctor’s office. When we got in the room, she noticed that he didn’t even want my youngest to touch him and on his own, handed me his tablet to get looked at by her. I told her “please check everything including his iron. He’s pale, he’s lethargic, he’s skin and bones, and his eyes are sunken in. You can’t tell me something isn’t wrong with him”. That’s when she noticed that his stomach felt distended and his iron was lower than it usually is. She told me to go to the gastro doctor and if I can’t get an appointment then to go straight to the hospital for a full scan. Thankfully, I was able to get a gastro appointment within an hour, and that’s when he told me that he found a mass on his stomach. My fiancé met us at the hospital from work and we took him straight to the hospital and that’s when we got the news that they found a tumor. 

Your whole world just stops. You never imagine that this will happen to you. You’re once happy, playing, dancing, always getting into trouble sweet little baby boy that already deals with so much with having EoE and a lot of allergies has cancer. I remember standing in the er screaming into my fiancés arms. A couple days after his biopsy, we got the news that it is Neuroblastoma. My whole world shattered again. I soon learned that I can not cry in front of him. He knows that he is sick but when I cry he will ask me “mommy, why are you mad?”. Elijah has stage 3 intermediate/stage 4 neuroblastoma. They say he has a unique case which worries us. He is ALK negative and MYNC negative with no spread to the bone marrow or bones so his tumor is localized, starting in his adrenal gland and grew very large near and around the kidney. But, when they looked under the microscope they found fast active cells. They said that it is dividing really fast and if we didn’t find it when we did, it would have spread. Because of this, they are treating him under high risk category making him a stage 4 as well. This includes 18 months of treatment with 5 cycles of chemo, stem cell retrieval, tumor removal surgery, high dose chemo, stem cell transplant (rescue), radiation, and immunotherapy. Many of this treatment has to be done in Miami, about 2 hours away from where we live. 

We have already completed 2 cycles of chemo and stem cell retrieval. Cycle 1 was really rough as this was the beginning of his diagnosis. His stomach was really distended from the tumor. He had a hard time breathing, his oxygen level were low, his heart rate was fast, his blood pressure was high, and he was throwing up. He had to be on oxygen for a few days and get nebulizer treatments. We also found out he was allergic to the dressing used to cover his chemo port so he developed a full abdominal body rash until we changed the dressing to IV3000. He wasn’t eating so they thought it as best to do a ng tube but after a few days we did take it out because it traumatized Elijah. We did start him on tpn feeds but because Elijah is so amazing, brave, and strong he showed them that he can eat and drink on his own. A few weeks after cycle 1 started, they physically saw that he is responding to chemo, and his appetite started to come back. After cycle 2, all Elijah does is eat which we are so happy about. 

September 11th starts cycle 3 and dad and I are really nervous. We hope he remains to be this amazing, strong, and brave sweet little baby boy. The oncology doctors think that he will have no problem with this cycle since he did so amazing during cycle 1 and cycle 2. 

We have been dealing with a lot of financial stress before this diagnosis. We are trying to be strong for Elijah during this time and with life not stopping, having 3 other kids at home, and other obstacles that we now have to face, we just keep asking to please pray for Elijah and our family. He is just so brave through this all. He knows what’s going on and will say “I go to the hospital and I get my special medicine”. My 3 year old is so much more brave and strong than dad and I ever will be. 

Whenever I tell my story about Elijah getting diagnosed, I always like to add to please be your child’s advocate. I truly believe the morning of July 12th, Elijah was indirectly crying out for help. He had no idea what was wrong with him and even though he is able to communicate with us, he didn’t understand why he felt this way. The only thing he was able to tell us was that his stomach hurt and he felt icky. This could have just been chalked up to be his EoE and the common cold since we were all sick during the time he was diagnosed. Please always be your child’s advocate. 

November 23, 2023:

Neuroblastoma. I hate you. When we found you, you were huge. Imagine a baby having a baby. His entire organs were moved around. He couldn’t breathe without retracting, he wouldn’t eat, he was very sleepy, and in a lot of pain. This tumor is now about 1 cm. And it’s done. The surgeon removed the adrenal gland. They did find a small lesion on the adrenal gland artery but he removed that as well. Neuroblastoma completely took over the adrenal gland.

August, 2024:

In July 2023, Elijah was diagnosed with high risk neuroblastoma. He had a localized tumor in his adrenal gland. When he was first diagnosed, his tumor was over 10 cm big. Due to how sick Elijah was, we took the decision to leave our job for 6 months on FMLA. Elijah went through 5 cycles of chemo, a stem cell harvest, tumor and adrenal removal surgery, 12 rounds of radiation, and 5 cycles of immunotherapy. When he went through chemo, it caused his numbers to drop low and it made him immunocompromised. Due to Elijah being immunocompromised, there was a few cycles where he was admitted to the hospital due to dehydration or neutropenic fevers. When Elijah went through immunotherapy, which doesn’t cause your numbers to drop low, we had a plan to start getting ready for life outside of treatment. Our oldest, Noah, is 6 years old and is starting kindergarten. We finished cycle 5 of immunotherapy in June and had a plan of going back to work full time, putting Noah and Matthew in school, and getting ready to start life outside of treatment.

We were getting ready to plan for the ringing of the bell. July 17th, Elijah went in for end of treatment scans. We got the call that night that the mri showed a 4 x 4 mass in the same exact spot his original tumor is in. With Elijah getting a cycle of chemo after his tumor and adrenal gland removal surgery and 12 rounds of radiation in that spot, the cause for relapse in the exact same spot worried the oncologist. When Elijah went for his MIBG scan, it didn’t light up so we were hopeful. August 2nd, we drove to Miami Nicklaus Children’s Hospital for a pet scan. Unfortunately, we got the results that not only there was a 4 x 4 mass in the same exact spot the original tumor was in, there was also a 5 x 3 x 8 cm mass in his pelvic bone. With the size of the new mass and it metastasizing, the plan was to biopsy the pelvic mass and start aggressive chemo.

Due to Elijah getting chemo again, which is a much more aggressive chemo then he got the first time, his numbers will drop low and cause him to be immunocompromised. We are getting treatment in Miami at Nicklaus Children’s Hospital. Noah will start kindergarten, which causes more of a chance of germs spreading.
On top of this, Justin will have to continue working through this on the days he’s able to work the days he can.
Once Elijah completes these 2 cycles of chemo, he will get a pet scan to make sure he is responding to the chemo and plan for surgery to remove the remainder of the pelvic mass and the mass in the same spot the original tumor is in.
We will also have to go to Sloan in New York for radiation as the radiation Elijah previously got he’s unable to get again due to the mass’ being in the abdomen again.

November 2024:

Today we went into cycle 2 of chemo/ immunotherapy. Please hope and pray he does good this cycle as my 2 other kids got hand foot and mouth. So far Eli is okay but last cycle Eli was sick and it was a hard cycle and we couldn’t finish the 5 days of chemo so this time we really need to finish the 5 days of chemo.

Insurance approved Elijah going to New York. My son is going to Memorial Sloan Kettering. I’m at a loss for words.

December 2024:

We got an expected date for surgery. I’m waiting on a call for more information. I can not believe my son will be getting surgery at Sloan. I hope this is the last time he’ll ever need surgery.

January 2025:

Unfortunately, the chemo/immunotherapy isn’t working. Eli’s tumors grew and is causing him pain and fevers. He will have to get a pet scan tomorrow and then start high dose chemo.

January 2025:

The pet scan did show something in the brain but they can not confirm if it’s disease or artifact. He will do a MRI of his brain in a few weeks when he does his scans of his abdomen and pelvis to see if the 2 tumors are responding and see if the spot on his pelvic bone is responding.

February 2025:

Unfortunately, the last couple of days he has been screaming in pain that his stomach hurts. Oncologist are assuming it’s mucusitis but they’re going to do a CT scan because the amount of pain that he is in.

March 2025:

I wish I can wake up from this nightmare. I wish I can see him put his army outfit on and run around playing 911 with his brothers. I don’t understand why this disease is doing this. This isn’t fair.

March 2025:

The greatest sight after 3 days of not eating a single thing and doing nothing but sleeping. We are hoping the appetite stimulant he’s been taking is working.

Ct scan results showed that there was “mild decrease” in his tumors which is amazing. He is on DFMO. His surgery is set for April 4th. We made the decision to do it in Miami as we don’t want to waste anymore time. Unfortunately, we are stuck between keeping his left kidney or not. The tumor is sitting on top of the left kidney and wrapping around the renal artery. If we save the kidney, there is going to be tumor left behind and cancer cells left on the kidney which he will get 16-20 rounds of radiation but the thought of any microscopic cells left on the kidney that may be missed during radiation due to trying to save the kidney even through radiation, doesn’t make us feel comfortable. We have half doctors agreeing to take the kidney and other doctors not agreeing saying he’ll need both kidneys for future chemos. But, there are chemos and kids who have 1 kidney and are still able to do chemo. This has been a debate and long thinking but I think we are coming to a decision to remove the entire tumor including taking the left kidney out.

The reason for Elijah’s pain: mild partial bowel obstruction due to the medicines he’s been on, scar tissue, and testing positive for the rhino entero virus last week.

He hasn’t pooped in 4/5 days and is finally starting to eat after 3 days so we’re hoping it’ll get things moving. They believe it’s because he needs to move around and wake his bowels up. He was throwing up bile 10 times on Wednesday and they said if he continues to throw up bile they would need to do an ng tube to drain his stomach but the antibiotics they put him on helped and he hasn’t thrown up bile in a few days.

April 2025:

We have made the hard decision to move forward with high dose chemo/stem cell transplants. It’s a decision we really didn’t want to take, but with our options running out due to him being resistant to chemo and still having a tiny spot of disease in his pelvic bone.

The ng tube was unfortunately needed to be placed due to how tiny and little he is. He needs to be bigger and stronger to get through that treatment.

The plan is:

3-4 weeks to recover from surgery.

Do a ton of the tests needed for the high dose chemo/stem cell transplant.

Do 1 of the high dose chemo/ stem cell transplant and if he does really well he’ll move forward to the 2nd high dose chemo/ stem cell transplant.

Radiation.

And then we will figure out what to do moving forward once he’s done with all of this but he’ll definitely stay on DFMO.

This is all a nightmare and we’re very scared but we know Elijah is so strong.

May 2025:

I hate you neuroblastoma. 4 weeks post surgery and we get the call that his mri of his abdomen and pelvis and the pet scan showed new growth. Another soft tissue mass that is protruding into his spine. He will get a MRI of his spine for a better look at it. We are unsure of what the next steps are. He still has his pelvic boney disease which we we expected to be the only thing that showed disease.

June 18, 2025:

Elijah’s dedicated chest CT scan has showed devastating news. At this point, my son’s cancer is non curable. We are hoping and praying that CHOP has something to offer, but his attending is doubtful that they will. He says to continue to bring Elijah there and if there is anything to offer then we will discuss palliative care. I have no words.

July 2025:

A little 5-10 minute energy boost from Eli. Doing his favorite thing, swinging on the swing. 

Having my son on hospice is a feeling I wish no one has to experience. Seeing my son decline daily. Seeing the pain he is in. Seeing him struggling to breathe but not wanting oxygen because the nasal cannula is uncomfortable. Seeing the chest x ray taken today showed that his entire left lung can’t be seen. They can’t tell if it’s disease or a collapsed lung but this is the reason that he is having a struggle to breathe. They said we can admit him if we want but our wish is to be home and that’s why we have opted in having hospice. 

We love you so much Elijah. You are such a warrior. We are so proud of you. We are so proud of how strong you’ve been through this almost 2 year journey. 

We aren’t ready for you to go yet, so hold on a little bit longer my warrior.