Monday, July 22, 2019

Lily’s Journey - Part 4: Recovery

There is so much to share with Lily’s journey so I am writing them in parts. You can read them here:
Part 1: Lily Has A Tumor
Part 2: The Biopsy
Part 3: Formal Diagnosis & Surgery

The hardest part of this whole ordeal was seeing our baby girl in the state she was in after surgery. The doctor just performed a craniotomy making an incision from ear to ear across her head. When Noah and I made it to the pediatric intensive care unit to see her after surgery there were nurses and doctors surrounding her. They had already removed her breathing tube and she was able to see us.

She had been under for over 12 hours and I know that was tough on her body. She lost a lot of blood and had to have 3 units of blood transfused. She was already puffy and there was a bandage across her nose. We cried together when we were able to get up close and hold her hand.

The doctors didn’t want her fully sedated because they needed to ask her questions to ensure she was neurologically ok. She was able to follow Dr. Thompson’s commands immediately after coming out of anesthesia.
DAY 1 after surgery

Taking everything in and seeing her that way physically made me sick to my stomach. I excused myself and found the rest room. I stayed with Lily through the night while Noah went home to care for the other kids.

We have been incredibly lucky to have an amazing support system through all of this. My mother-in-law had been visiting when we first found out about the tumor and she has stayed with us to help with the other kids and also be there for Lily. We are so grateful and lucky to have her.

But our other friends and family have been wonderful too. The kind messages of concern, the prayers and the sweet gestures have truly humbled us. So if you are reading this, thank you ❤️

The nurses and everyone treating Lily at Memorial were excellent. We even had some familiar faces from Lily’s last hospital visit which was comforting. They showed us compassion and empathy and took loving care of Lily.

The first night Lily did get sick. I think her little body couldn’t handle the blood and anesthesia.  Other than that she was in and out of sleep. She would wake up and be thirsty and could drink water out of a straw. A few hours after surgery she was taken to get a post-op scan. The result was miraculous. There was no signs of the tumor.

BEFORE: 5 cm tumor originated behind her right eye and extending up into her skull

AFTER: no more tumor!

Day 2 and 3 were HARD. For all of us. I hadn’t left the hospital since Monday. I had not seen any of the other kids and Lily had some rough time with being poked, not really having an appetite and struggled with her pain management. She went from being able to see through one eye to being so swollen both eyes were completed shut. It was truly heartbreaking.


After a few days in the PICU, she improved. They removed her foley and another IV. She was able to stand for the physical therapist and walk to the bathroom. Eating and taking medicine were her biggest struggles.

Eventually, we convinced her to eat so she could move out of the PICU and graduate to the children’s floor.

By Day 4 and 5 Lily was talking more and really trying at taking her medicine and eating. Her swelling finally started to subside and she could open her eyes. She was happy to be able to watch TV. She wasn’t on morphine anymore and only down to Tylenol for pain management.

DAY 4 leaving the PICU
DAY 4 finally able to open her eyes 
DAY 5 playing in the kids playroom

On Friday, we got the good news that Lily could go home. The day we got discharged she had special visitors- her siblings. She was so happy.

They say kids are so resilient and it really is the truth. We never expected recovery to go so well. She has amazed us in so many ways. She has showed us some much grace and courage.

Going back to the room to be discharged! 

Back at home in our own bed! 

Lily has continued to improve daily since coming home. We have had two follow-up appointments and Dr. Thompson is so pleased with how everything is going. The plan is to have another MRI and CT scan in a few weeks.

We could not be more pleased with Dr. Thompson, Dr. Petruzelli, and the entire team that cared for our little girl. We will forever hold a special place in hearts for this group of people. We are so thankful that this tumor did not go down another path. It could have gone down a much scarier path if the tumor had been cancerous.

Hopefully, this will be the last time we will have to deal with such a frightening situation. Thank you to everyone for praying, sending us positive thoughts and following along Lily’s journey.

Follow-up appointment with Dr. Thompson and Ms. Kristen
Stiches are out! 

Thursday, July 18, 2019

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

Friday, July 12, 2019

Lily's Journey- Part 2: The Biopsy

There is so much to share with Lily’s journey so I am writing them in parts. You can read Part 1 here.


Once we found out Lily’s MRI showed a tumor, things started to happen pretty fast. We found out on May 8th on a Wednesday.  I don’t think I slept at all that night because my heart was hurting for our little girl and my mind was racing with the worst thoughts that she could have cancer. I mean, that is why we were meeting with an oncologist the next day, right? We share the news with our close family members and all of us felt the same way- a mix between sadness and fear of the unknown.

The next morning (May 9th), we had an early appointment with Dr. Brown, the pediatric oncologist at Memorial University Medical Center.

I really didn’t know how the appointment was going to go. I think I got ahead of myself and was thinking she would tell us about stages, survival rate, etc.  Scary stuff.  However, the first thing she told us is that we needed to find out whether the tumor was benign or malignant. To identify it, a biopsy would need to be performed. Also, we needed to find out whether the tumor was contained to one area or if it had spread so we were scheduled for a PET scan and CT scan.

According to the initial MRI results, the tumor was favored to be cancerous in nature. But only pathology could correctly identify it.  The next step was to determine who would perform the biopsy and how it would be done since the tumor was both behind the eye and extended into the base of the skull. 

It was decided the best surgeon for the task was Dr. Petruzelli, an ENT (Ear, Nose and Throat) surgeon. We made an appointment with him as well as scheduled the PET scan the following Monday.

Throughout our time in the clinic, everyone at Memorial was wonderful. The child-life specialists were great with Lily offering her support in case she had any questions and guiding her through scary blood draws and IVs. They also helped her to understand every procedure she was about to have done making her feel so much more comfortable about it all. It was very helpful for us too as this was a whole new world to navigate. At this point, Lily only knew we were just trying to figure out what was wrong with her eye. We didn't even know how to tell her she had a tumor.

Monday, May 13th: Our day was booked. We were to have our PET scan (full body scan) at 9 am, break for lunch and come back for the results, then meet with Dr. Petruzelli in the afternoon. We were happy things were happening fast because we were anxious to have some answers, but at the same time I felt really overwhelmed. We had seen so many doctors over the past few weeks and I really had no time to process what was going on. But still, there was no time for a pause. 

Lily did great with the PET scan and the wait seemed like forever for the results. Finally, the results were in and Dr. Brown came into the patient room with a smile. The PET scan showed the tumor was contained to one area. It was instant relief to know, even if the tumor was malignant, it had not spread. We were just very grateful for the positive news.

Lily in the clinic getting poked

Our next appointment of the day was with Dr. Petruzelli.  He was excellent with Lily. He explained her tumor and biopsy procedure in a way she could understand. He told her there was an unwanted visitor in her head. He was going to check on the visitor and we would have to ask him/her to leave because it doesn’t belong there. I thought it was a great way to explain this for her.

I figured the meeting would be to discuss an upcoming biopsy to be scheduled in the near future. I didn’t realize it meant the very next day. He wanted Lily to have a CT scan and be admitted to the hospital that night. The biopsy would be performed first thing the following morning on Tuesday. Again, things were happening fast.  That’s the crazy part. We really take time for granted. I think that was the hardest part of this whole situation.  I wasn’t allowed time to feel things, to release them, and/or accept what was going on. 

She was resting while the "glowing medicine" spread through her body.

Going through the PET scan
Admitted to the hospital

Neither Lily nor I were prepared we would be staying at the hospital that night. However, we got settled into our room, Lily had the CT scan and then we tried to get some rest.  I didn’t rest all that night but I prayed. I prayed for Dr. Petruzelli, I prayed the biopsy would yield positive news and I prayed for strength; Both for me and for Lily.

The day of the biopsy. Still smiling :)

The biopsy was at 7 am. Lily was nervous, but we both smiled and then she was taken away. Noah and I then waited. It took two hours, but Dr. Petruzelli came out with a big smile on his face. He was happy with the samples he collected for pathology and from the look of the tumor, he believed it to be benign! It was nothing concrete until the pathology results but we were elated.  We were hanging on to every bit of positive that we could. 

Recovering from the biopsy and reading get well cards

Thursday, July 11, 2019

Lily's Journey- Part 1: Lily Has A Tumor

Lily at Dr. Devaro's office
I treated Lily to ice cream for being so good for the MRI

It's funny how certain dates stay with you. They mark the important dates in your life. Most of them are joyous occasions. Some of them are not. I will remember May 8, 2019 forever. That is the day I got the call that Lily had a tumor. 

A little back story. About two years ago, we noticed Lily's right eye slightly wandered when she was tired or not focused. We took her for an eye exam and we were told she had strabismus, an eye condition which the eyes do not align with each other and a slight astigmatism. She was prescribed glasses. 

After the first year, we didn't really notice an improvement in her eye but the doctor didn't seem too concerned. We had also had others in my family ask me about her eye. There was just something that wasn't sitting well with me. Call it mother's intuition. 

Fast forward to May of this year. I decided to seek another eye doctor's opinion and he recommended me to a pediatric ophthalmologist. We had our appointment with Dr. Devaro on May 7th. We were in his office for a couple of hours doing various tests. From what he could see, her vision was good and her optic nerve was healthy. But he was concerned about the bulging (proptosis) and ordered a MRI. I asked him what could be causing her condition and he just told me "we won't know until the MRI results". 

Up until this point I still wasn't alarmed. I still didn't think it was a tumor. I didn't know what it could be to be honest. Dr. Devaro's office called me the very next day and asked if we could bring Lily in for the MRI. I think the sense of urgency for the MRI alarmed me because I figured we would just schedule one the following week. 

May 8, 2019. I took Lily for her MIR at 10 am. It took about 45 minutes. Lily wasn't a huge fan of laying super still and definitely didn't like when the nurse had to poke her to inject the dye. After it was done I figured we would get the results in a couple of days at the earliest. I dropped Lily off at the house and drove back to work. It was around 2:00 pm . I was just getting settled back at my desk when my my phone rang. 

Dr. Devaro was on the other line. I was not prepared for what he told me. I felt like he was talking so fast and then the call was over. He told me he appreciated me taking Lily to get her MRI so soon and then he broke the news. The MRI showed Lily had a large tumor behind her eye. It was pretty concerning and that he wanted us to come into the hospital the next day to meet with Dr. Brown, an oncologist. He said it was serious and that he was sorry. The next step was to get more scans and to get a biopsy done so we could identify what kind of tumor this was and if it was contained or not. I don't even remember if he said anything else.

After I got off the phone, I immediately broke down in tears. The ugly crying ensued and I was inconsolable. TUMOR? ONCOLOGIST? 

My mind started to think for the first time, does Lily have CANCER? 

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