Neuroblastoma surgery (tumor removal and adrenalectomy)

Below is the information I typed up back in January. Being a person that needs to know every detail and make every preparation, I felt like Emily's surgery was a black hole of unknowns. I decided I would attempt to document her surgery with a few notes to help other families that may be considering the same procedure.

Background: Emily's tumor was found in-utero and monitored since birth. It was 4.5cm at birth and shrunk to about 1cm by the age of 9 months. It had been diagnosed as neuroblastoma through MIBG and CT scan. After that time, it remained the same size (according to ultrasounds) and we opted for surgical removal at the age of 15 months.  We knew that she would lose her right adrenal gland, at a minimum. There was a small chance of losing her right kidney if the mass was adhered to the kidney.

Day of surgery:

Pre-op: As with most surgeries, she could not eat past midnight. Emily was allowed clear liquids up to 4 hours before surgery. Once we got to the hospital, there was a lot of waiting. They took us back on-time, took her vitals and gave her a kiddie gown to wear. We spoke to lots of people - surgeon, 2 anesthesiologists, nurses, students, etc. About 45 minutes after her scheduled time, they were ready for her and we were told it would take a couple hours. The anesthesiologist came for Emily and let her play with her iPhone while she slowly took her and walked away.  What a tough time to be a parent!

Surgery: Fortunately, Emily’s surgery was laparoscopic, although we had to sign off on having her opened up (if needed). I wouldn’t know either way until afterwards, they were just going to have to make a judgment call in the OR if they could not pull everything out the small incisions. The laparoscopic procedure requires 4 incisions that allow for the camera, drain, and surgical instruments. They can sometimes pull the adrenal gland and tumor through the navel, but older babies often have too much bowel and it makes it difficult for the surgeon to see. Emily’s tumor was pulled through the main incision on her right side and is slightly over 1 cm in size. The adrenal and tumor (attached) were put into a bag inside her and then pulled out of the hole. All was sent to pathology for testing. Incisions were closed using interior stitches and surgical glue/tape on the outer skin that will fall off in a couple weeks. The surgery typically takes two hours. Emily’s was complete in about 90 minutes.

Post-op: After surgery, all children are taken to the PACU (Post anesthesia care unit) for observation. One parent is usually allowed back (due to space) and the child stays for 30-60 minutes before moving to a private room. Emily had complications with her breathing and we spent a long 3 hours there. The breathing issues were related to a slight cold that she had before surgery, which was amplified by anesthesia drugs and a breathing tube down her throat. Her oxygen levels were 98% when we checked in that day, but dropped about 10-15% after surgery. She received 3 nebulizer treatments and oxygen tubes for her nostrils, which increased her levels to the mid 90s.

Surprisingly, they allowed me to hold her right away.  I was nervous about hurting her, but was told that the pressure on the incision sites feels good to them. I thought I’d have to be so careful, but Emily snuggled right in and fell asleep. Anesthesia takes a lot of you, especially if you are a little one. Once she got put into a room, she slept for most of the day. Katie, Grandma and Grandpa came to see her for a short time. She mainly just rested on me or Daddy, not really feeling up to much else. Because she was pumped full of fluids during surgery, her whole body became swollen.  You can see she looks very swollen in this photo.  You could barely recognize her!

As expected, it was a rough night in the hospital. Emily slept well, except the IV caused her hand to swell.  When we finally saw this (again, you can see it in the photo), we convinced the nurses to remove the IV during the night and put it in her foot instead (where she had another IV port already). One important lesson is to always advocate for your child because nurses and doctors are not phased by most of what they see. If you don’t think something is right, you need to bug enough people to make sure that something is done. Poor Emily’s hand and wrist were blown up to about twice their size due to IV fluids that were not circulating properly. Yes, they had to remove the wrist IV and put the fluids in through the IV in her leg but it felt much better to her.

The next day, Emily sat up in her bed and started to make some noise. We knew she was getting back to her normal self when she started pulling up her sheet and playing peekaboo. A group of doctors came to check on her during her peekaboo time and she just pulled the sheet up over her head and kept it there until they went away. Such a smart girl! We ordered her some yummy food (chicken and mac and cheese, lots of applesauce and fruit) and let her munch on Cheerios and dump them all over her bed. By the end of the second day, we got the OK to be discharged. We didn’t want to risk taking her home right away, so we headed to a local hotel for the night. Emily did great at the hotel, relaxed and played with her new doodle pad (thanks to Grandma & Grandpa). We headed home with her the next morning and kept her home for the rest of the week.

2 weeks later: Emily’s recovery has been amazing. She is such a strong girl! We went for our follow up 2 weeks after surgery. Fortunately, days after the surgery, we received amazing news…there was no sign of neuroblastoma within the adrenal gland. Emily’s doctor seems to think that the NB regressed on its own. They did find a hemangioma in her adrenal, which we were told is a very strange place to find one. A hemangioma is an abnormal group of cells/blood vessels, often found on the outer skin (seen mainly on children at birth). The doctors were interested in this occurrence and planned to discuss it at their case reviews, but did not see any reason to worry as it was all removed. It is the best news we could have hoped for!

10 months later: We are scheduled for Emily's annual follow up in about 6 weeks.  I can't believe it.  For the first 18 months of her life, I thought about her tumor EVERY.SINGLE.DAY.  After she recovered from her surgery, I rarely thought about it.  Now that her check up is scheduled, part of me wonders if we've missed something, if she's completely healthy or if something else has grown back.  We pray for a perfect check up and look forward to visiting some of our favorite nurses and doctors back at UNC.  Our family has been through enough this year and we deserve some good news!