Navigating Nolan

In mid-April of 2023 we had just returned home from a wonderful family trip to Disneyland and Universal Studios out in California to have our once vibrant, energetic, eight-year-old son Nolan start vomiting on a regular basis.

At first, it wasn’t too prohibitive to prevent him from attending school as he’d mostly vomit in the mornings upon waking and be on his way, with no other symptoms.

After a few days, we brought him to his pediatrician. As Nolan was presenting otherwise healthy, our pediatrician was unsure what it could be outside of a GI bug.

He did, however, order some blood work, including a celiac panel.

While waiting for the blood tests to return, Nolan's vomiting increased, and we decided to visit the Virtua Voorhees CHOP ER. More tests, some IV fluids, and no answers. We left hydrated and encouraged to follow up with CHOP GI, for which we were on the waitlist for an appointment.

Learn more about CHOP

A few days later, we had a follow-up with our pediatrician and found out that Nolan was indeed positive for celiac disease. We decided at that point to begin a gluten-free diet, hoping it would ease the vomiting symptoms. Additionally, we were able to get a cancellation at the CHOP GI office on the main campus for the following week.

The GF diet presented challenges for our picky eater, but we kept at it, only to go to our first GI appointment and find out we needed to bring gluten back into Nolan's diet for the endoscopy to help "officially" diagnose him as celiac.

As Nolan continued to vomit, we had one day in which he vomited eight times; we decided under the guise of our doctor to visit the CHOP ER at Main Hospital. They found him dehydrated and determined it'd be best to admit him and do his endoscopy earlier than planned. As Nolan continued to vomit and even so, following his endoscopy (which did confirm celiac but found no other issues like ulcers or bacteria), we were told to be patient and that he'd be back to normal in a couple of weeks.

Nolan was still not at the point where he could attend school, and we were trying to take things day by day, patiently waiting for the vomiting to cease. Following a visit to the celiac clinic, we talked more about Nolan's discomfort. We decided to adjust his meds, hoping he'd have more energy and return to normal shortly. At this point, he'd been vomiting for about 6 weeks, almost daily, and on a strict gluten-free diet (when he could eat) for about 2 weeks.

Beginning the week of May 22nd, Nolan began to complain of headaches which was a new symptom and something all of the doctors we met with asked him if he had, which he repeatedly said no. Additionally, that week he began sleeping for long stretches during the day, which was also unusual for Nolan.

On May 25th, with Nolan struggling to get off the couch, we decided to take him back to the CHOP ER following a conversation with the nurse practitioner of the celiac clinic, who said: "something about Nolan's case just made her uncomfortable."

We returned to the ER and, this time, made it back pretty quickly. I expected him to be dehydrated, and maybe we'd get some fluids and be on our way. Surprisingly he wasn't very dehydrated, but as I retold our story, a couple of things stuck out to the ER doc:

the new symptoms of headache and fatigue,
him vomiting inconsistently but almost always in the morning.

The ER doc said they'd like to order an MRI. I personally wondered if that was necessary. However, my sister-in-law Lisa, a nurse practitioner and often my go-to for advice during this ordeal, said yes, go for it. Let's just rule anything else out.

I asked the nurse how long it takes to get results back, hoping we'd be home before midnight. She said it could take an hour, but if they see something right away, they'll let you know immediately. Sure enough, the attending ER physician was in our room asking if we could talk in private. I knew immediately they saw something and it couldn't be good.

The longest walk of my life was to that consult room escorted by three doctors and a social worker who told me the MRI showed a tumor in the back of Nolan's head.

In utter shock, they told me we'd be immediately admitted to ICU, and someone from neurosurgery would meet with me shortly to talk next steps. I called my husband Brian to deliver the news. We realized he'd have to stay home with our younger son Harry and meet me in the morning. I called Lisa to tell her the news, and she immediately came down to the hospital to be by my and Nolan's side.

A neurosurgeon told me they'd likely operate on Nolan the next day!! To remove the tumor and get the next steps going. From there, it's been a whirlwind. We explained to Nolan what was happening and why he'd need surgery. The child life specialists at CHOP explained it's best to be as honest as possible in these situations. They noticed, with Nolan being particularly observant and curious, that it'd be best to be upfront with him.

We sent him off to his surgery to remove the tumor, which took about 7 hours. The surgeon was very pleased with how much of the tumor he was able to remove. Due to the tumor's location, Nolan's speech, vision, and balance are affected. Still, with time and physical/occupational therapy, they will improve.

We spent a couple of days in ICU as Nolan recovered and have since moved down to the oncology unit. While Nolan has been experiencing discomfort at times and is upset at the situation, he is very strong and takes much in stride. Our full pathology report came back with the tumor being identified as ependymoma.

Learn more about ependymoma

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As of June 5th, we've had an MRI of the spine to check for additional tumors. Though we are told with ependymoma, it's not common to have tumors in the spine, and this is more a precautionary step. Additionally, this week Nolan will have a lumbar puncture and begin radiation planning.