Noah's funeral cost

When you first bring your child home from the hospital, you never think about the possibility of cancer invading your child's body and making it their permanent home. Never in our wildest dreams did we imagine we could be faced with fighting for our child's life at the tender age of 6. It's something out of a nightmare.

You think of how the world will impact them, make them grow, or all the beautiful memories you will make together. You think of all the laughs, and silly moments you will share as they make their way in the world... not the ones you may be forced to miss. To put it mildly, it's been a hell of a rollercoaster ride this last week. They haven't even invented the words.

All you want to do as a parent is protect your young and see them thrive in this complex world, adding their unique flair to it as they go. You sit and watch as they find their way with your guidance and unconditional love. You think of all the celebrations you will have, the small intricate victories as they learn to come into their own. It is one of the most rewarding things as a parent.

Noah was a little on the large side upon birth, 9lbs, delivered by cesarean section. He was perfect. He still is. Over the years, he has grown into a beautiful, kind, silly boy who loves breakdancing moves, Nintendo Mario Kart, and chocolate ice cream with rainbow sprinkles, to name a few. He loves his mommy and daddy and his stepparents dearly.

What does a parent say about their child to describe the insatiable love you have for them? How does one express their desperation to save their child's life to the world? It's nerve-wracking and heartbreaking being put in this position in the first place. We would instead be celebrating his 6th year of life... yet here we are.

Fighting.

The pain comes and goes in waves. So does hope. Like I said before... a rollercoaster ride indeed.

It all started a week ago, on April 4th, when his mother, Camille, contacted me to tell me our son was in the emergency room at Robert Wood Johnson. My heart sank into the pit of my stomach as fear set in. Oh no.

"Noah collapsed at school and had a seizure. The whole right side of his face was drooping, and his body went limp. The doctors ran tests... he has a brain tumor, and they say he may only have 5 years to live..."

I couldn't breathe. It felt like the world completely collapsed on my shoulders, and there was nothing I could do to get back up. What did we do wrong? What did we miss? How did we not find this out sooner? The questions flooded my mind as I walked back into the building. I was in shock. My whole body felt numb. How could this be? Why us?

I explained to my partner what was happening between sobs, and we immediately made our way to the hospital to meet with his mother and stepfather.

From then on, he underwent numerous testing and was moved to the Department of Pediatrics Hematology Oncology for further observation. The next day, Apr 5th, I, his mother, and his step-parents were greeted by a team of doctors while they took Noah to the hospital playroom. They explained to us the severity of his tumor. It was cancer. They call it DIPG for short. Essentially only 150 to 300 kids are diagnosed with DIPG every year; it is a scarce form of brain cancer and, in his case, is inoperable. According to the research, we will be in the fight of our lives to save our son from this disease.

Of all the cancers... it had to be this one. It had to be us. I have never been so afraid as a father... a fear I know is shared between all of us who love him.

Although the disposition is seemingly bleak, the doctors are hopeful for a good outcome. He will be undergoing radiation therapy every day for the next six weeks and then chemotherapy for however long it takes afterward. They hope it'll shrink the tumor and scar it enough to stop growing and become dormant. But with that being said, it will take us away from our ability to work and provide. Also, insurance will not cover everything. These treatments will be expensive, and so will anything he may need to accommodate him as his body adjusts to treatments; transportation, equipment, and medications he will need.

Between his mother and I, and everyone else, we will only be able to cover so much. We have no idea how long this fight will be, but we know the costs will be astronomical, upwards of 175,000 within the first year, and that is conservative.

Please... anyone out there reading this... please help us save our son. We cannot imagine existing in a world without him in it. Anything you can do to help, whether it be $1 or $20, will be greatly appreciated. And if you cannot spare anything, if you can please share this plea with others, we would be extremely grateful. Every little bit counts... every share helps. Thank you for all your love and support! Please share and when you do attach the hashtag #TEAMNOAH

***** Links and Information*****

What is DIPG?

Diffuse Intrinsic Pontine Glioma - A rare, fast-growing tumor that forms in cells called glial cells in a part of the brain stem called the pons. DIPGs tend to spread to nearby tissue and other parts of the brain stem, are hard to treat, and have a poor prognosis (outcome). They usually occur in children.

https://www.cancer.gov/publications/dictionaries/cancer-terms/def/dipg#:~:text=A%20rare%2C%20fast%2Dgrowing%20tumor,They%20usually%20occur%20in%20children.

What is the survival rate for DIPG cancer?

The survival rate of DIPG is very low, with the disease currently being considered a fatal cancer. The chances of surviving 2 years following a diagnosis are about 10% while the chances of surviving beyond 5 years is about 2%, which happens to be up by 1% since 2018

https://teamjackfoundation.org/what-is-dipg/

What does DIPG feel like?

The most common symptoms related to DIPG include the following: Problems with balance and walking. Problems with the eyes (including double vision, drooping eyelids, uncontrolled eye movements, blurred vision) Problems with chewing and swallowing.

https://www.stjude.org/disease/diffuse-intrinsic-pontine-glioma.html