Lily's Journey- Part 3: Formal Diagnosis & Surgery

At the pre-op appointment

There is so much to share with Lily’s journey so I am writing them in parts.

Read Part 1: Lily Has A Tumor

Read Part 2: The Biopsy

After the biopsy, the samples were sent to a lab in Michigan. We got the results about a week later and Lily was formally diagnosed with an ossifying fibroma at the base of her skull. We were thrilled to get confirmation the tumor was benign and what type of tumor is was, but now what? 

Ossifying fibroma is a rare, benign tumor but will likely recur if complete resection is not performed. We met with Dr. Petruzelli and Dr. Thompson and they discussed a couple of different approaches to remove the tumor. With either approach, it would take both surgeons to remove it and it would be a major surgery. 

I think this part terrified us more than anything. We are not medical professionals and it was such a huge decision to make. Thinking about our little girl having this major surgery was such a scary thought. 

We had people weighing their opinions on what we should do and it was all pretty overwhelming. We even reached out to the Children’s Hospital of Atlanta to see what they would recommend, but ultimately it was our decision. 

After thinking carefully and speaking with other patients, we concluded that we would take Dr. Thompson’s approach to perform a craniotomy with reconstruction. 

We set a date for July 1st. This gave us a few weeks to prepare and squeeze in last minute fun before the big day. Setting the date felt like a relief for us. It was one step closer to putting this behind us. We didn’t want to have to worry about this tumor anymore. 

Thankfully, we hid much of our worries from Lily because we didn’t want to concern her or cause her any distress. She was not in any pain and she was allowed to just be a kid for a few more weeks. 

She didn’t ask too many questions but she knew the surgery date and that we planned to have the tumor removed. 

We met with Dr. Thompson for our pre-operation appointment. He went over the procedure, the risks, complications, recovery, etc. I know it’s his responsibility to tell me all the things that could go wrong, but I was not prepared. All I could do is pray that none of these terrible things could happen, trust in his skill and experience as a surgeon and for Lily’s strength to get through this successfully. 

A couple of days before the surgery, Lily had another MRI and CT scan to make sure the tumor had not grown since her last scans in May. Thankfully, nothing had changed.

A couple days before the surgery to get scans done

One last CT scan before surgery

We were told the surgery would take at least 7-8 hours. He would start the surgery then have Dr. Petruzelli come in and then he would return to perform the reconstruction. We were in for a long wait.

On July 1st, we arrived at the hospital at 5 am. The surgery was scheduled for 7:30 am. If Lily was scared she didn't show us. She was talkative and watched TV as the nurse and the operating team came in to introduce themselves and check-in with us. It definitely made it easier on us because when they finally wheeled her away, she was smiling. We told her we loved her and would be waiting for her once she was out of surgery. 

The wait was long, but we received hourly updates on how things were going and how Lily was doing. I didn't care how long the surgery was as long as Lily was doing well and the doctors were able to focus. 

I was terrified of how Lily would be after surgery and how she would look. I was hoping I could just be strong enough to handle it. It was hard to see her weep after the biopsy so I knew it would be hard if not harder to see her after this major surgery.

Dr. Thompson made sure to tell us what to expect. We were repeatedly warned she would be swollen and that the swelling would get worse on Day 1, 2 and 3. It's one thing to be told this. It was a whole other thing to see it.

The surgery was a success. We were told she must have been graced for the surgery because Lily did so well throughout the entire surgery. I strongly believe my mom was watching over her from heaven. She was stable and there were no hiccups during the procedure. We were so grateful, relieved and anxious to be reunited with her. They took her straight from the operating room to the pediatric intensive care unit, where she would spend the next couple of days.

Fresh out of surgery