Merrick N.

On August 31, 2021 I witnessed my 24-month old son having a seizure-like event before bed and of course panicked as any mother would and immediately saw a neurologist within days.

Two weeks later Merrick was scheduled for a sedated MRI to rule out any structural concerns and before leaving the recovery room we received a haunting phone call that our son had a brain tumor in his left frontal lobe. We were immediately admitted into the hospital and told he would need brain surgery within 2-3 days.

The surgeons were able to successfully remove the entire brain tumor 3 days later and had no surgical complications and within days we were able to recover at home while waiting on pathology.

Over the past 2 weeks, Merrick has regained speech skills and strength in his right arm and hand which were severely impacted immediately post-surgery and he has been happy being home with mommy, daddy, and his 4-year-old brother Gavin.

During this time our family was almost certain that the pathology report would be a positive one because of the way that the doctors described the appearance of the tumor upon removal but this week we were completely blindsided with the news that no parent wants to or ever should hear. Merrick's tumor has not been formally named at this time and is undergoing additional testing but has been diagnosed as a very aggressive malignant type of brain tumor that will immediately require additional testing and chemotherapy treatment.

He will be arriving at St. Jude's hospital in Memphis, TN early next week to have testing and his first round of chemotherapy completed with the hope to resume his treatment protocol closer to home at Joe DiMaggio.

Merrick is the happiest, smiliest little blonde-haired boy you will ever meet. People just melt when they see his smile and he's constantly trying to interact with everyone around him. He's always been a wild little boy who loves to play exotic cars, Hot Wheels, and toy snakes with his big brother Gavin, run, climb, and is an amazing ISR graduate and swimmer. He loves to be read to constantly and is always inquisitive about the world around him. He absolutely adores his brother and will do just about anything to make him laugh.

On October 5, 2021 Merrick began his treatment at St Jude and according to mom, Amber, “this week will be full of appointments, testing, and imaging and next week chemo will begin. Today we had appointments with the head Neuro, oncologist who is our doctor and met several nurses. Merrick had a crummy blood draw that took 3 people to hold him down and consults with anesthesia and surgery to discuss tomorrow’s port placement. Friday will also be the brain and spine MRI and spinal tap.”

October 8, 2021 - Good News - Merrick’s brain, spine, and cerebral spinal fluid are clear and the neuro oncologist feels pretty good about his prognosis.

October 11, 2021 Chemo Begins

October 18, 2021 Merrick had his appts today and he is officially neutropenic but acting happy. All other blood counts look okay.

October 20, 2021 Merrick developed an allergic reaction to a pneumonia prevention medication they started him on and a rash got progressively worse spreading all over this chest, arms and under his chin.

October 26, 2021 Hoping for good news that we can travel back to Florida but we still have to monitor his platelets which are dropping.

November 1, 2021 We are cleared for travel back to Florida and someone fell asleep, but Daddy is willing to carry him, seat and all, through the airport.

February, 2022 update:

Merrick has been receiving all of his remaining treatment at Joe DiMaggio Children's Hospital in Hollywood, FL and will be starting his 6th and hopefully final round of chemotherapy next week in addition to some genetic testing. After chemo he will be following up with the team at St. Jude to assess development and progress with treatment and discuss further plans for monitoring him over the next several years. More than likely he will need brain and full spine MRIs every 3 months to start out which always require sedation/anesthesia but are critical to assess for any new tumor growth.

At this time, despite advanced testing on the tumor conducted by St. Jude, Merrick's tumor has been unable to be classified/named and is still being labeled as an Infantile High Grade Glioma. We even found out that the head neuro oncologist has never had a patient with his exact pathology findings and that there is only 1 published study which mentions those specific findings in CNS cancer patients.

It has been hard as parents not knowing or being able to research more about our son's tumor but watching his resilience and strength during chemotherapy has really given us a lot of hope that he can beat this horrible disease. His courage, strength, and constant smiles between medical interventions is enough to put a smile on anyone's face. He tells the nurses he needs to plug his nose when they are about to do the saline flushes or open the scrubbies to clean the tubing and they think it’s so funny. It’s sad, but at least he knows to plug his nose and he no longer cries.

We pray that we will continue to receive the news of clear scans as time goes on and plan to make many amazing, fun memories with our little family this year to come!

February, 2022

Merrick’s grandmother writes:

Mighty Merrick truly is a warrior

God has been so gracious through each and every chemo treatment. Merrick will be going to the hospital on Monday, the 14th to be admitted and will begin chemo on Tuesday ending his chemo on Wednesday. He will get to ring the bell for completing his 6 chemo rounds. My daughter and son-in-law have been enduring through any parents worst nightmare. We are so thankful that we have had so many people praying and that God has been moving in so many ways through Friends and family who have been loving on them and praying for Merrick and the family. He will be under close monitoring and he will also be having scans of his brain and spine again in May at St Jude. They will determine how to move forward with the monitoring. My prayer is that not only is this cancer is completely gone and never to return again anywhere in his body, but I also pray that he did not endure this hardship for nothing and that God had a plan all along to draw many people closer to Christ through this. As they witnessed a very strong two year old, and his parents, endure all of the ups and downs of every day life of a child with cancer.
What the devil meant for harm, God has meant for good.

Romans 8:28

February 2022, Merrick’s mom writes:

I have SO much I could say but here is my attempt to keep it short ……
Today is the end of Merrick’s chemotherapy treatment. In 171 days (they miscalculated so I’m just going with it lol) he has gone through a brain surgery, 7 MRIs, a port placement, a lumbar puncture, 6 rounds of chemotherapy, and 2 blood transfusions. Even though he has done fairly well dealing with the side effects compared to some kids, it has been very emotional and exhausting to go through all of this as a family and a lot for his little body to undergo. While it’s obviously a very happy day because we want this part of his healing to be over so we can strengthen his body again, it’s also a very strange feeling to enter the world of remission with a lot of very real fears of recurrence and the overall unknown future.

What is the plan now? Well, we will be helping and praying him through the end of this last round and hoping he feels well and doesn’t require any more blood transfusions. We have follow up tests at St Jude beginning of May to rule out any tumors and to determine all of the details of his frequent monitoring for any new tumor growth over the next several years. We assume he will be getting brain and full spine MRIs every 3 months for a couple of years and they will slowly spread them out. Our goals are to enjoy each other, make lots of fun memories, and support his body to heal and strengthen since it can take about 6 months to fully regain his pre-chemo immune system.

I honestly can’t even begin to express how grateful and humbled we have been to receive the love and support of others during these past 5 months. I mean we literally are so overwhelmed by how much people opened up their hearts to our families and prayed over us and supported us in so many different ways. We are eternally grateful & we look forward to paying it forward one day

We believe God has HUGE plans for Mighty Merrick & we are excited to see them unfold

Update August, 2022

Merrick recently had follow-up brain and spine MRIs at St Jude in April 2022 and Aug 2022 and praise God he showed no new tumors and was able to have his port removed Aug 17th!!

Since chemo ended we have been able to enjoy life more with our boys and give Merrick many fun adventures such as visiting Disney parks, Seaworld and Aquatica for his 3rd birthday, and many fun times at parks, pools, "snorkeling", paddle boarding, and a few playdates with friends! It is amazing to see his typical toddler personality, his imagination with his brother, and his constant bright smile despite everything he has been through to this point.

Following chemo we found out the news that Merrick does in fact have a pathologic genetic mutation called the Chek 2 1100del which basically means he has a lifetime increased cancer risk compared to the average population. While pediatric brain cancer is not one of the cancers that has been proven to be associated with the mutation, we as parents have own doubts and believe this is what caused his cancer.

The visits to St Jude are still every 3-4 months and will probably never get easier for us in reality but we are so grateful to have a very happy, healthy child right now who is officially 6 months in remission!