About Us > Devin's Story
Devin's Story
May you, or anyone you care for, never have to suffer one of a parent's worst nightmares. This is what happened to our Devin, with that "twinkle" in the eyes, sensitive, intuitive, athletic, energetic clown of a child. On February 1, 2003, Devin began vomiting daily after being awake for about an hour, then seemed fine for the rest of the day, maybe a stomach bug or the flu, after all it was the season. He stayed home from school, and by the end of the day Devin running around with his sister. After four days of the same, we called his pediatrician, and were advised this virus lasted for about six days. Devin's vomiting increased in number of times per day, the retching of his body made you ache for him. He was complaining of headaches, maybe from all the severe retching. At this point we become frantic, and wondered what was causing this? It had to be something in the house. There was a leak in the roof and were undergoing renovations that must be the cause. We needed to make sure Devin didn't have a brain tumor, because no one else in the house was sick, it didn't make sense.
We called the pediatrician again; they would see Devin the next day. Tests were run consisting of blood work, urinalysis, abdominal X-ray and a CT scan, all were negative. They wanted to see him the next day, concerning dehydration. Devin was admitted to the local hospital. When I met my family at the hospital, Devin was screaming "help" and crying from a room with a closed door. He was terrified, of the nurse trying, for the fifth time to put an IV in. This was only the beginning of the pain Devin would endure. He continued vomiting through the night, every two to three hours, until it became blood. I asked a nurse to check what Devin had just vomited, because it looked and smelled like blood. They were sure it was just bile, but would test it anyway. The test showed the emesis was primarily blood. Devin was transferred to Boston, the Mecca of medical care.
An ambulance was ordered to transport him to New England Medical Center. I was allowed to ride with Devin to comfort him. He was so scared, rightfully so, he'd been a very healthy child, outside of colds, etc. When we arrived, he was inundated with new doctors with questions of his medical history thus far. After the review, there was concern regarding repeating the CT scan. They were satisfied with the report from the previous CT scan. Devin had an endoscopic procedure the next day with a stomach biopsy, to rule out an ulcer. It was discovered that his stomach had prolapsed into his esophagus and was ulcerated, from all his retching. The vomiting continued through the night, as many as twelve times, with no known cause. Devin hadn't eaten in days at this point, he was wasting away.
He was now complaining of the severe head pain, they were still unsure if it was due to dehydration. Devin began drifting in and out of consciousness and was seeing double. They repeated the CT scan. The team of doctors were showing us the films and pointing at a mass, in the background we could hear Devin screaming. They were puncturing his head, to insert a drain and alleviate the cranial pressure, while we were given the news that Devin had a brain tumor. He would require surgery the next day. They would attempt to remove the tumor and he needed a permanent shunt in his head for drainage. The tumor was blocking the flow of the cerebral spinal fluid, thus causing fluid buildup and vomiting.
Devin's third surgical procedure was on February 15. Their conclusion was that he had cancer, a medulloblastoma/PNET, it was inoperable. They gave us many books on the subject, I read them all. After his MRI, we found out the tumor also covered his spinal cord, they said like a "sugar coating." Next we met the oncology team, for more bad news. Devin's chances were not very good; we found out much later he didn't really have a chance at all. Another surgery was planned for him, a "permanent" catheter that went directly into his heart, for the chemotherapy. It went into our hearts as well. His body was no longer his own, or ours. We felt funneled into a system without any choices; they had already been made by someone else.
Devin was finally able to return home. The concept of cancer eluded him, even though the doctors had "explained" it to him, it was still very abstract. In his mind, once he was home it was all over. Returning to the hospital was the last thing he thought he would need. He had nightmares and worried about dying at six years old. I'd check him before I went to bed, and kiss him one more time, whispering to him that he was loved and to stay strong, he'd startle awake asking "What are you going to do to me now?" He was traumatized by all he had experienced. He no longer had the safe haven of sleep.
Devin had what would be his first and only round of chemotherapy, which does not penetrate the blood/ brain barrier according to a researcher at Dana Farber. The nurses all had to wear industrial gloves while handling this very toxic substance. We were instructed not to handle any of his bodily fluids; including his tears, they would be toxic as well. The poison dripped into our little son, and he was in pain every day for one month following this proposed cure.
After extensive research and red tape we ended up at Hasbro Children's Hospital in Providence. The people here really care; they treated the whole family and even cried with us. Devin was unable to regulate his own body temperature, which told me the tumor had invaded, deeper into his brain. Devin never really stopped vomiting, but was it the chemotherapy, or the tumor? He ended up having two seizures, further damaging the brain. Devin slipped into a coma after the second seizure and began having mini strokes, which would lead to a larger one or a heart attack. If by a miracle he survived all that, he still had the cancer to fight. One of many fabulous nurses asked us to bring in a photo of Devin, when he was healthy, so his current state was not our last memory of him. We knew his little body was tired, Devin endured so many invasive procedures, he knew the love all around him, and we were grateful he loved us. We had to let him go. I held my baby again, in my arms, the way he was given to me when he was born. No more pills, catheters to flush, tubes, IVs or the thirteen machines controlling his body. His whole family got to say good-bye as he was finally at peace, no more pain!
Thank you to all the people that came out to support us during this nightmare; I don't know when we will wake up. All the support, cards, gifts, food, flowers, services and donations helped us through this unbearable time. People didn't know what to say to ease our pain, support was enough. A parent doesn't need to say anything, because we all feel the same thing; it's understood an unspoken universal language.
Many people at his service wanted a copy of the poem Devin's Uncle Carl wrote for him. Here it is in our son Devin's memory:
Devin's Poem
Winter's over and the grass is cut,
there's joy, yelling and laughter,
and I can see the batter's swinging in lazy circles,
and the blue sky going on forever.
I've waited all winter just to hit the ball
and make that "thunk" when the bat
gets it right and Dad smiles.
But I guess winter's not quite done — the wind
still blows blustery — and today,
my ball went out of the park... with a little help.
It was a great shot.
The scouts saw it, and they must have been angels
'cause I saw 'em writing,
— maybe I was going early!
and when the role was called at Little League,
I was nowhere to be found,
I was already on my journey.
I MADE THE CUT!!!!
BE PROUD OF ME!!!
I am going to the SHOW!!
But you guys... my family and friends...
I smile...
you already know.
Our sincerest gratitude for your support.
Robin and Andy
