A good example: what medical science knows is dwarfed by what it doesn’t know or can cure

https://www.facebook.com/nolanscully/photos/a.1650631771858020/1866071863647342/?type=3

Two months. Two months since I’ve held you in my arms, heard how much you loved me, kissed those sweetie “pie” lips. Two months since we’ve snuggled. Two months of pure absolute Hell.

I’ve wanted for a long time to write a little about Nolan’s last days. His last few days shined with how amazing my son is. How beautiful he is. How he was made of nothing but pure love. This may be long, but bear with me, it’s agony unlike any other.

When I brought Nolan to the hospital for the last time, I knew there was something else wrong other than just a lingering case of C-DIFF. I just knew, and strange enough, I think he did too. He hadn’t eaten or drank anything in days and was continually vomiting.

On February 1st we were sat down with his ENTIRE team. When his Oncologist spoke, I saw the pure pain in her eyes. She had always been honest with us and fought along side of us the whole time, but his updated CT scan showed large tumors that grew compressing his bronchial tubes and heart within four weeks of his open chest surgery. The Mestatic Alveolar Rhabdomyosarcoma was spreading like wild fire. She explained at this time she didn’t feel his Cancer was treatable as it had become resistant to all treatment options we had tried and the plan would be to keep him comfortable as he was deteriorating rapidly.

After a while, I composed myself and went into Nolan’s room. He was sitting in “Mommy’s Red Chair” watching YouTube on his Tablet. I sat down with him and put my head up against his and had the following conversation:

Me: Poot, it hurts to breathe doesn’t it?
Nolan: Weeeelll…. yeah.
Me: You’re in a lot of pain aren’t you baby?
Nolan: (looking down) Yeah.
Me: Poot, this Cancer stuff sucks. You don’t have to fight anymore.
Nolan: (Pure Happiness) I DONT??!! But I will for you Mommy!!
Me: No Poot!! Is that what you have been doing?? Fighting for Mommy??
Nolan: Well DUH!!
Me: Nolan Ray, what is Mommy’s job?
Nolan: To keep me SAFE! (With a big grin)
Me: Honey … I can’t do that anymore here. The only way I can keep you safe is in Heaven. (My heart shattering)
Nolan: Sooooo I’ll just go to Heaven and play until you get there! You’ll come right?
Me: Absolutely!! You can’t get rid of Mommy that easy!!
Nolan: Thank you Mommy!!! I’ll go play with Hunter and Brylee and Henry!!

The next day he was resting, as he slept most of the days after. We had Hospice on board, all his IV medications, even his DNR signed. (I cannot explain to you what signing an Emergency Responder “Do Not Resuscitate” order for your angelic son feels like. ) When he woke up we had the van packed and I had his shoes in my hand to take him home for the evening. We just wanted ONE more night together. But as he woke, he gently put his hand on mine and said “Mommy, it’s ok. Let’s just stay here ok?” My 4 year old Hero was trying to make sure things were easy for me….

So in between sleeping for the next 36 hours, we played, watched YouTube, shot Nerf Gun after Nerf Gun and smiled as many times as we could. An hour or so before he passed he even filled out a “Will”! We laid in bed together and he sketched out how he wanted his funeral, picked his pall bearers, what he wanted people to wear, wrote down what he was leaving each of us, and even wrote down what he wanted to be remembered as… which of course was a Policeman 👮🏻

About 9:00pm we were watching YouTube in bed (Peppa Pig actually) and I asked Nolan if I could get in the shower, as I was not allowed to leave him and Mommy had to be touching him at all times. He said “Ummmm ok Mommy. Have Uncle Chris come sit with me and I’ll turn this way so I can see you”. I stood at the bathroom door, turned to him and said “Keep looking right here Poot, I’ll be out in two seconds”. He smiled at me. I shut the bathroom door. They said the moment the bathroom door clicked he shut his eyes and went into a deep sleep, beginning the end of life passing.

When I opened the bathroom door, his Team was surrounding his bed and every head turned and looked at me with tears in their eyes. They said “Ruth, he’s in a deep sleep. He can’t feel anything”. His respirations were extremely labored, his right lung had collapsed and his oxygen dropped.

I ran and jumped into bed with him and put my hand on the right side of his face. Then a miracle that I will never forget happened….

My angel took a breath, opened his eyes, smiled at me and said “I Love You Mommy”, turned his head towards me and at 11:54 pm Sgt. Rollin Nolan Scully passed away as I was singing “You are My Sunshine” in his ear.

He woke up out of a coma to say he loved me with a smile on his face! My son died a Hero. He brought Communities together, different occupations, made a difference in people’s lives all around the world. He was a warrior who died with dignity and love to the last second.

All Nolan ever wanted to do was to serve and protect others, he did just that all the way up to his last breath and continues to do so every day. He loved his family fiercely and everyone of his “friends”!

I look at everything he accomplished in 4 short years and can only think of what he could’ve accomplished with a longer life. But sadly because of Childhood Cancer (Rhabdomyosarcoma to be specific), the world and our family will miss out on someone so full of love, who just wanted to protect and serve. We HAVE to do better with funding, research, treatment options. Below is a picture that seemed to grab everyone’s attention because my son was terrified to leave my side, even as I showered.

Now I’m the one terrified to shower. With nothing but an empty shower rug now where once a beautiful perfect little boy laid waiting for his Mommy. See less
— feeling heartbroken with Jeanette Atkins and 2 others
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2 Responses

  1. This had me in tears. That poor baby & his family. My deepest condolences to his family. I can’t even imagine being in there shoes. Thank you Steve for sharing this. I hope & pray 1 day a cure is found for the children.

  2. Poor little kid, ugh, such a heartbreaking story. But thanks for sharing it Steve, it is important to make people more aware of stories like this one. More support for research is desperately needed.

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