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Bobby and Kelly Dawes donated

$250.00

Thank you for sharing your story Jenn. I'm sure it takes everything you have to write these updates, but they are truly moving and make a difference!

8 years 9 months ago
Posted by Jennifer Henley 8 years 9 months ago
Posted by Jennifer Henley 8 years 9 months ago

September is Pediatric Cancer Awareness Month. Day 27 of my celebration of Nick.


Christmas 1986 – a bittersweet day. NICK MADE IT TO CHRISTMAS – he defied the odds. Yet we knew those moments of celebration were temporary. We still threw ourselves into the Christmas holiday. And what an amazing celebration it was. I remember running down the stairs on Christmas morning and it was as if we walked into Santa’s Workshop. Toys were setup everywhere. There was a huge model airplane dangling from the ceiling and it seemed like the presents never ended. Regardless of what we knew was coming, that was a happy morning that we celebrated as a family. Nick received a bowling ball that year for Christmas. He loved bowling and was thrilled with his present. He grinned from ear to ear.


A few days earlier, on December 20 Nick told my mom and dad that he needed to finish his Christmas shopping. He had received money for his Communion and Confirmation and wanted to make sure he was able to buy us all presents. My parents were thrilled that he had the energy to want to go out. So they got him dressed and loaded him into the car and went to the Drug Emporium so he could shop. Nick didn’t have the strength to walk so my dad carried him through the store on his back. He carefully picked out his presents and once done, he asked if they could go to Burger King for a burger. Over they went and as hard as Nick tried to eat, he did not have much of an appetite. Low and behold, later that evening, he asked if he could go out and see the Christmas decorations. So my parents loaded him in the station wagon with blankets and pillows and propped him up so he could see all the lights. I often wonder what was going through his head. Did he know? Did he know how imminent his death was? Was he cognizant of wanting to make sure he had a full Christmas? We’ll never know, but what I do know is that on December 20, 1986, Nick was able to enjoy the spirit of the season and his last trip out of the house. My mom still has the present he gave her that year – a carefully selected Wind Song talcum powder. Some presents are worth holding onto for a lifetime.


This is the last picture of me and Nick. When I look at this, it warms my heart; we both look happy. And when I see his pillowcase, the Sesame Street pillowcase, a huge wave of nostalgia washes over me. I loved that pillowcase – everything about that pillowcase reminds me of Nick and for a long time after he died I could smell him on it. A sweet smell of syrup with a little bit of sweat. I would hold that pillow close to me after he died because that smell was such a wonderful physical reminder of him. I would often go and smell that pillowcase at random times for years after he passed away. It grounded me, it connected me to him. I remember the day I could no longer smell the faint smell of him on that pillowcase; it was a dagger to my heart to lose that last tangible thing. But when I see it now, I realize nothing can erase or take my memories. NOTHING. And this, a simple pillowcase, brings back a flood of memories that will fill my heart for a lifetime.


Ella donated

$50.00

Happy Birthday Jenn & Nick <3 <3

8 years 9 months ago

Mike Yaghmai donated

$150.00

Nick's story is very moving. What a big warrior he was. Thank you so much for sharing it and letting us all celebrate his life with you and your amazing family.

8 years 9 months ago

Lena Ryan donated

$100.00

8 years 9 months ago

jamie and amy butler donated

$200.00

8 years 9 months ago
Posted by Jennifer Henley 8 years 9 months ago

September is Pediatric Cancer Awareness Month. Day 26 of my celebration of Nick.


December 6, 1986 (The Feast of St. Nicholas) – As long as I can remember, my family has celebrated December 6th – St. Nicholas’ Day. I can clearly remember every year, my mom reading us the background on St. Nicholas from the “Book of Saints” and explaining to us how the Catholic version of his life morphed into modern folklore and he became known for bringing toys to children. Every year we would lay our boots out on December 5th and look forward to seeing what trinkets were left for us the next morning.

In 1986, we all anticipated St. Nicholas Day in a different way. Nick was in second grade at the time and this was the time of year when the second graders made their first communion. Nick had a wonderful Sunday School teacher (Joan Bonfiglio) who used to come out to the house and go over the preparations for receiving Communion with him because he was bedridden at the time. Because he missed the actual communion ceremony with his class, the parish priest had said he would make a special house call to the house and perform the ceremony there for our friends and family to be a part of. This was so important to Nick and to my mom and dad that Nick receive his First Holy Communion; they also decided at that time to Confirm him as well. Nick requested that this ceremony take place on the 6th of December and everyone decided how fitting that was, since it was what we had begun to refer to as “his special day”. Little did we know how special that day would be.

On December 5th, Nick went into a coma. It happened late in the afternoon and we were all told that this was the end and it was doubtful he would come out of it. With heavy hearts my parents decided to proceed with the Communion/Confirmation service on the 6th. So that day, it was a sunny Saturday, I remember it well, our neighbors came over and we all watched as Nick received (as much as possible) his First Communion and was confirmed as a member of the Catholic Church. It was a bittersweet moment for all of us. There was a parade of people who came through the house that day, everyone coming to say goodbye and spend time with Nick.

Low and behold, once again, Nick defied odds and on December 7th, Nick came out of his coma. As quickly as he went into it, he came out and the first thing he did was ask for Nehi Orange Soda. And I remember, sitting on the floor, as my parents were changing his bedding and he was on the floor and I was sitting with him and his big, blue eyes fluttered and he whispered, “Jenny? I love you Jenny”. He was lucid and conscious and we had more time. Time. . .something that you don’t think much about until you are grasping and pleading for as much of it as you can have. You want to hold onto each second and treasure and cherish each of them, because we knew time was fleeting and our time together would soon end.

After the coma, we weren’t sure how long Nick would survive. I remember kissing Nick goodbye and telling him I loved him before I went to school each day; not sure if that would be the day he would close his eyes for the last time. I remember we decided to exchange presents early; Nick wanted a Pound Puppy so badly and despite that being the “it” toy of the holiday season, I was able to get one for Nick. The puppy was named Chocolate and he loved it. That puppy was constantly with him in those final weeks. It’s funny, while we never got the “miracle” we all so desperately hoped for, I do think St. Nicholas heard us; because we did end up getting the gift of having Nick with us through the whole holiday season.


Viarengo/Mertz Family donated

$200.00

8 years 9 months ago
Posted by Jennifer Henley 8 years 9 months ago

September is Pediatric Cancer Awareness Month. Day 25 of my celebration of Nick.


Thanksgiving 1986 – this is the last photo of the four of us as a family. My grandmother was in town for Thanksgiving and there are a series of each of us wearing that napkin tucked into our shirts. I am not sure why we were doing it but we all seem to be laughing about it for some reason.


Nick was very sick at this point – he was losing his hair again, he was pale and he was dropping weight quickly. It was shortly after Thanksgiving that he stopped sleeping in his room and needed to sleep on the couch downstairs because it was too taxing to walk up the stairs. There was a cloud looming over all of us and each day was just a reminder that we were one day closer to our last with Nick. And now the word “last” started being a thought before everything, as in last Thanksgiving. And on this particular Thanksgiving, it was gloomy, it was cold and it was raining. In retrospect, seems fitting given what was going on inside the house as well.


Throughout this month I have been looking through photos, studying them and trying to find the right photos both to capture Nick but also capture the story I want to tell. The other night, I was looking through photos from the last 3 months of 1986, something struck me. I noticed in one photo Nick was missing a front tooth. And then the next photo he was missing both front teeth. And I frantically scanned through photos and realized in all of those “last” photos, Nick is flashing a toothless grin. I called my mom, voice cracking as I asked her, “Was Nick missing his front teeth when he died”? She told me yes, he was. And as the doctor’s told her, his body was focusing so hard on keeping him alive and fighting the cancer that regular bodily functions and growth and development – hair growth, nail growth and in this case, tooth growth, was much slower than normal.

I started crying quite hard as I struggled to find my words and explain why this seemingly small item, missing front teeth, was so important in my head. And I realized, for me it signified the cruelty of the universe associated with a simple right of passage – here was an 8 year old boy, going through normal growth and development activities, loosing his teeth; yet he never survived long enough for those permanent teeth to grow in. While his systems were trying to maintain normalcy, there was something much darker going on inside, that his body just could not defeat. And even all these years later, an anger and a sadness overtook me because it was yet another reminder of how young he was – he was missing his front teeth; he was still a child, he should have had so much life still ahead of him.