How are we already at her tumor removal surgery? After chemo round 4 it is the ideal time to remove her tumor. The surgeon scheduled a CT of her abdomen to check the tumor size and placement. We met with Dr. Daniel Rhee a week before surgery to double check her scan and go over what to expect.
Dr. Rhee showed us how Payton's tumor has shrank so much from the chemo. Originally you could hardly see anything besides tumor in her CT scan. It is hard to put a size on the tumor now since it is not a solid tumor, but I would estimate it to be about 4x4cm and 2x1.5cm in two different spots. The tumor was still wrapped around her aorta and very close to her left kidney. But Dr. Rhee thinks we are ready for removal.
He explained that the goal is to remove about 90% of her tumor, knowing he cannot remove all and that the chemo during transplant will wipe out what will remain. He also gave us about a 20% chance that he would need to remove her left kidney. The kidney function and levels have looked great throughout her treatment but he will need to make the call once he had his eyes on it. He was still pretty confident the tumor was coming from her left adrenal gland, which is on top of the kidney. The surgery will be very long and extensive because he will need to move her intestines out to get to the tumor. He is expecting to start around 7 am and it will go well into the early evening. Along with the risk of removing her kidney, there is a risk of a chyle leak, and of course, like all surgery, a risk of bleeding. He is expecting she will need a red blood transfusion during the procedure. During surgery he would also place a feeding tube in her stomach called a g-tube to help with nutrition later in her treatment plan. He said he would anticipate two nights in the PICU and about 5-7 inpatient for recovery.
Of course all this information had both Jeff and I anxious and nervous for surgery. Our little girl would be open for many hours and had some major risks. But overall this would help us get her one step closer to being cancer free. Dr. Rhee was amazing, he was very honest, answered all my questions, and really made me feel as though Payton was in the best hands possible. All Hopkins staff had nothing but great things to say about Dr. Rhee, and almost everyone said he was the best surgeon for Payton's cancer. He is the Director of the Pediatric Surgical Oncology Program and everything felt right.
On November 16th Payton was scheduled and we were to arrive to Hopkins at 5:45 that morning. No one could sleep the night before, maybe Payton knew something was happening because her energy that night before was unreal. We arrived to Hopkins at 5:45am getting Payton ready for the OR. Our nurse was wonderful and played with Payton around the PACU as we talked with the doctors and signed off on papers. She was rolled back to the OR around 7:50am. Jeff and I went back to the Ronald McDonald House, where we were staying the night before, to sit and relax for a bit while we wait. It beats sitting in the waiting room for hours. We ate lunch and tried to keep positive through the day. No news is good news. Plus we were getting text updates every hour saying "patient is doing well." We headed back to the waiting room around 2:30, knowing we would probably wait for a few more hours. Once we got to the waiting room that is when the anxiety started to set in. We watched as families in the waiting room were greeted by the doctor and left to go see their child. It was just after 7:00pm when Dr. Rhee entered the waiting room, phew...
He said everything went well and as planed. He was able to keep her kidney and there were no unexpected bleeding or issues. The tumor was coming from her adrenal gland, which he removed. He said he was able to remove about 96% of the tumor! One part he needed to leave behind was on her aorta leading into her kidney, it was about the size of a pea maybe 1cm and just too risky to take. She was still in the OR getting closed up and ready to move to the PICU. We could finally go see her waking up in the PICU around 8:30 that night. She had lots of tubes and drains to monitor her recovery. As she was waking up and very sleepy she seemed to be doing good.
We spent that night in the PICU (Pediatric ICU). She needed some support with oxygen and breathing treatments, as she has in the past after being under anesthesia. Payton would not be allowed any food or drink for some time as they watched her recovery and healing/function of her bowes. That night she did great in the PICU, she was alert and seem to be doing well on her pain management. They had Payton on an epidural to help with the abdominal pain and scheduled IV pain medicine. The next day Payton was sitting up and asking for water. The ICU and surgery team seem very impressed with her progress thus far. By mid day she was ready to transfer out of the PICU and up to 11S (our oncology floor). Once we got up to the 11th floor and around the staff who are family our mood was lighter and we were happy.
Day 2 after surgery she was allowed the "slip and chip" diet, which started with one ice chip an hour for half a day, then she was allowed a few ice chips and 2oz of water for an hour. Payton was soooo excited for her "ICCCEEEEEE." Trying to tell a two year old she was not allowed to drink or eat is way harder then you can image. From there Payton continued to improve each day, impressing the surgical team! We did some physical therapy to get her body moving and pain in check. She started slow but pushed through and was ready to start making moves. At some point she did get a fever. Blood cultures were drawn and antibiotics started. Everything came back clear and we believe her fever was from inflammation and side effects from recovery.
Day 4 she started eating some food and she was also very excited. Bacon and pancakes have never tasted so good. Dr. Rhee said he would be very impressed if she was eating solid food at day 4 and here she is killing it. Payton's recovery was much quicker then I was expecting, but she is always impressing me. Kids are so resilient!
By day seven she still had no signs of a chyle leak, her g-tube was function and ready for use, no more fevers, and her pain was under control. We were ready to go home just in time for thanksgiving!
Payton's incision is just about the length of her whole abdomen and she now has a feeding tube in her stomach. Her little belly is looking much different but in my eye it is the belly of a warrior! Surgery was extremely scary and recovery was slow but quick at the same time. I am beyond impressed by Payton each day, she is my rockstar.
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